Autism Spectrum Disorder- The Complete Guide to Understanding Autism ( PDFDrive.com ).pdf

Autism Spectrum Disorder
“This well-documented guide offers clear answers to difficult questions and
recommends the important resources that parents will find the most useful. She’s
done the research so the reader doesn’t have to! Her abundance of practical
knowledge has been compiled into this user-friendly updated edition that both
parents and professionals will want to keep on hand to refer to time and time
again. Truly a must-have!”
—Ricki G. Robinson, MD, MPH, member of the Scientific Review Panel of Autism Speaks; medical
director of Profectum; and author of Autism Solutions
“A clearly written, well-organized, carefully documented compilation of
important information and useful advice. It will provide invaluable help and
guidance to parents and professionals alike, especially those who are new to the
world of autism. This book is not merely highly recommended—it is
indispensable.”
—Bernard Rimland, PhD, past director of the Autism Research Institute, founder of the Autism
Society of America, and past editor of Autism Research Review
“This is an essential source of information and advice in plain everyday
language that can help anyone who is affected by autism today, from the parent
of a newly diagnosed child, to someone who has been in the trenches for years.
Kudos to Chantal for providing us with this long overdue, user-friendly, how-to
guide for dealing with autism.”
—Portia Iversen, cofounder of Cure Autism Now Foundation (CAN), member of Innovative
Technology for Autism Advisory Board of Autism Speaks, and author of Strange Son
“The essential book that parents, health professionals, and a wide readership will
reach for in order to fathom this confounding condition.”
—Douglas Kennedy, author of Leaving the World, The Moment, and The Pursuit of Happiness
“If I could recommend just one book to families and professionals, this is it! In
Autism Spectrum Disorder, Chantal Sicile-Kira shares her immense knowledge,
personal experience, and insightful advice for families affected by autism. She
guides readers along the journey from diagnosis through adulthood, including an
extensive compilation of resources and ‘food for thought’ throughout. This isn’t
a book that you’ll read once and place on a shelf; it’s an invaluable resource that

you will continue to refer to for years to come.”
—Wendy Fournier, founding board member and president of the National Autism Association
“Autism Spectrum Disorder is a tremendous resource for families caring for
children and adults with autism. While sharing her personal experiences of a
parent of a child with autism, Chantal Sicile-Kira provides insights and resources
that are often missing from many of the books on this topic. Quite simply Autism
Spectrum Disorder simplifies many of the complications that families face in
navigating systems of care, and in doing so, she gives families hope and great
inspiration.”
—Areva D. Martin, Esq., cofounder and president of Special Needs Network Inc.
“For more than thirty years I have treated visual developmental delays for those
with ASD; I think I have made a difference. But my contributions pale in
comparison to what Jeremy has taught me through his work in Vision Therapy,
and what Chantal has taught me as a mother and author. This book will become a
lifelong companion for those who want to make a difference in a life—a life
with autism or not.”
—Carl G. Hillier, OD, FCOVD, clinical director of San Diego Center for Vision Care

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The Library of Congress has cataloged the first Perigee edition as follows: Sicile-Kira, Chantal.
Autism spectrum disorders : the complete guide to understanding autism, Asperger’s syndrome, pervasive developmental disorder, and
other ASDs / Chantal Sicile-Kira.—1st Perigee pbk. ed.
p. cm.
ISBN 0-399-53047-9
1. Autism—Popular works 2. Autism in children—Popular works. 3. Asperger’s syndrome—Popular works. 4. Developmental
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RC553.A88S566 2004
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PUBLISHING HISTORY
Perigee trade paperback edition / September 2004
Revised Perigee trade paperback edition / January 2014
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Version_1

For Jeremy, Rebecca, and Daniel, the stars of my universe.

I know of nobody who is purely autistic or purely neurotypical. Even God
had some autistic moments, which is why the planets all spin.
—Jerry Newport, Your Life Is Not a Label
The history of man’s progress is a chronicle of authority refuted.
—Author unknown

CONTENTS
Acknowledgments
Foreword by Temple Grandin, PhD
Preface
About This Book
CHAPTER 1: The Myths and History of Autism Spectrum Disorder
CHAPTER 2: What Is Autism Spectrum Disorder and How to Know If a Person Has ASD
CHAPTER 3: What Causes Autism Spectrum Disorder and Why Do People with ASD Act the Way They Do?
CHAPTER 4: Newly Diagnosed Adults and Parents of Children with ASD: After the Diagnosis
CHAPTER 5: Treatments, Therapies, and Interventions
CHAPTER 6: Family Life
CHAPTER 7: Education
CHAPTER 8: Community Life
CHAPTER 9: Adults Living and Working with Autism Spectrum Disorder
Closing Comments
Resources
Bibliography
Index
About the Author

ACKNOWLEDGMENTS
MANY people have contributed in different ways to this book. I’m forever
grateful to Bernard Rimland, PhD, and Temple Grandin, PhD, for their
generosity of time and knowledge. Both Dr. Rimland and Dr. Grandin have, in
different ways, shifted the paradigm in how the world looks at autism and how
we can best help our children, whether they are toddlers, teenagers, or young
adults. (Bernie passed away in November of 2006 and this was a great loss to all
of us in the autism community.)
Thanks to all those on the spectrum who have shared their experiences. They
are the real experts on autism. I’m grateful to the many parents and educators
that I’ve met at conferences around the country; I’m continually learning from
other people’s experiences and knowledge base. Thanks to the many parent-
driven organizations and professionals providing much-needed supports to
families, and the researchers who continue to try to solve the mystery of autism
and how to best help our children to reach their full potential.
Thanks, Lindsay Edgecombe and James Levine, for your support over the
years, as well as Marian Lizzi, editor extraordinaire with whom I’ve had the
pleasure of working on three books, and now this update.
Special thanks to my parents, Andre and Mathe Sicile. They did the best
they could raising a neuro-diverse family of six children with no relatives around
to help after moving to the United States from France in the 1950s. No easy task,
yet we all survived!
To Rebecca and Jeremy, for being who you are. You were great children, and
you’ve become wonderful young adults. I am so proud of both of you and am
forever grateful I was chosen to be your mom. Raising you both—with your dad,
of course!—has been my greatest and most important accomplishment. And
lastly, to my husband, Daniel, thank you for your unwavering loyalty and
constant support on this strange journey called life.

FOREWORD
THE autism/Asperger spectrum is very broad, ranging from a brilliant scientist to
a person who remains nonverbal with a severe disability. There are many
characteristics that are the same along the entire continuum. Two of the most
important are problems with social situations, and sensory sensitivities. Sensory
problems are often overlooked. When I was a child, a loud school bell was like a
dentist drill hitting a nerve. It hurt my ears.
Chantal Sicile-Kira originally contacted me to discuss sensory processing
issues. She told me she was writing a general reference guide to autism spectrum
disorders. This led to a series of phone calls and faxes. Finally, we met at an
autism conference in San Diego, where I had been asked to speak, and Chantal
handed me her manuscript, asking me if I would read it and tell her what I
thought.
I read her book on my plane trip back home, calling Chantal from two
different airports to tell her how impressed I was with the thoroughness of her
manuscript, as well as her ability to take complex information and simplify it,
rendering it understandable to everyone. This book gives the general public,
professionals, and parents a better understanding of the autism/Asperger
spectrum, as well as providing lists of resources useful to those who are on the
spectrum, and those who work and care for them.
I would like to give a word of advice to all people who work with children
or adults on the spectrum: develop talents that can be turned into job skills or
hobbies. Social interaction will develop through an interest that can be shared
with other people. Special education teachers often put too much emphasis on
deficits and not enough on building on areas of strength. As a visual thinker I
was good at drawing, and my visual and drawing skills became the basis for my
career as a designer of livestock facilities.
Skills tend to be uneven; an individual may be good at one thing and not
another. I was good at drawing and building things, but algebra was
incomprehensible because I could not visualize it. The minds of people on the

spectrum are usually specialized. I have observed that there are three basic types
of specialized minds: the visual thinking mind; the music and mathematical
mind; and the nonvisual numbers and language translator mind. Teachers and
parents should work on utilizing these strengths.
Individuals with autism often become fixated on a single thing, such as
trains or airplanes. Use the strong motivation of the fixation to encourage
activities. If a child likes trains, use trains in mathematical problems, read a train
book to teach literacy, or invent a game involving trains that can be played with
other children. A good teacher takes the fixation and broadens it out. Many great
scientists pursued a childhood interest.
The autism/Asperger spectrum is a continuum from normal to abnormal. In
my book Thinking in Pictures, I profiled former scientists such as Einstein who
had childhood autistic traits. The British researcher Simon Baron-Cohen has also
written on the appearance of autistic traits in scientists and physicists. When
does “computer nerd” become Asperger’s? There is no black-and-white dividing
line.
Individuals who remain nonverbal will often have something they are good
at. Many of them have fantastic memories. They may be good at jobs such as
reshelving books in the library or taking inventory of the stock at a shop. They
would be good at a job that most people would find boring. Develop these skills
so they can be useful.
People on the spectrum who have a fulfilling life now often had four
important assets earlier in their life: early education and treatment; medication or
other treatment for severe anxiety, depression, or sensory sensitivities;
development of their talents; and mentors and teachers to help them.
What I really like about Chantal’s book are the many references to and
quotes from people on the autism/Asperger spectrum. This information from
personal experiences will give both parents and professionals much-needed
insight into how autistic people perceive the world.
—Temple Grandin, PhD, author of Thinking in Pictures, associate professor of animal science at
Colorado State University, founder and president of Grandin Livestock Handling Systems Inc.

PREFACE
My mom saved me from a life of despair.
Her attitude is the key to my achievements.
She made me feel I could be a success, no matter my challenges.
—JEREMY SICILE-KIRA
SINCE this book was first published in 2004, much has changed in the world of
autism, as well as in our son, Jeremy. When Jeremy was first diagnosed over
twenty years ago, we were told that if we were lucky, we would find a good
institution for him. I don’t think the diagnostician meant the United Nations, but
that’s where Jeremy ended up—as the first Youth Representative to the United
Nations for the Autism Research Institute at age twenty-three. He also graduated
from his local high school at age twenty-one, with an academic diploma and a
GPA of 3.78, despite having to type to communicate. He auditioned for and gave
a commencement speech using voice output technology that is still inspiring
many on YouTube (more on Jeremy later).
But Jeremy’s achievements did not happen overnight. It took finding the
right professionals to help him; taking care of medical challenges; advocating
and negotiating for him when he was a child to ensure he had an appropriate
education; working as a team with the great educators we found; and lastly
raising and teaching him with the attitude that he was smart, and that one day we
would reach him. It wasn’t easy. But I left no stone unturned in finding the
resources that could help him.
This updated edition of my first book will guide you in finding the courage
and the resources you need to make the best possible choices in regard to
treating, educating, and raising your child. Every child is different—what helps
one child with autism may be ineffective for another. Although there is a lot
more information available now than when Jeremy was a baby, parents still need
to become experts on their child and what could help him or her. This new

edition has been completely updated with the latest information and the best
websites to consult as new discoveries are made.
Although Jeremy is my inspiration for all the writing and training I do now,
my first experience with autism was during my college years. In need of a full-
time job to sustain me through college, I applied for a position at Fairview State
Hospital for the Developmentally Disabled in Orange County, California, and
was hired to teach adolescents self-help and social skills in preparation for
community living. This was my first contact with the intriguing world of autism
and some wonderfully unusual people (including the staff). I then worked for a
short while as a case manager at Orange County Regional Center for the
Developmentally Disabled, providing information and resources to families and
their children.
Little did I know that my professional introduction and hands-on experience
would serve me well when, twelve years later in France, I had my son, Jeremy,
who was eventually diagnosed with autism. The only course of treatment offered
there at the time was psychoanalysis. I was strongly reprimanded for using
behavioral techniques in an attempt to teach my four-year-old son. Eventually,
we moved to England before making our way back to California, where Jeremy
is now a client of the same types of agencies I used to interact with on a
professional level.
I could have used a book such as this one years ago, when I tried to learn
whatever I could to help my clients, and then again after having my son. Having
spent tens of thousands of hours learning about autism spectrum disorder (ASD),
how to navigate through the different systems in different places, and how to
create what my son needed, it seemed a waste to hoard all that I had learned for
the benefit of just my family. That is why I wrote the original edition of this
book, which won the Outstanding Literary Award from the Autism Society of
America and a San Diego Book Award. Since then, I’ve gone on to write five
more books and to speak around the world to provide parents and educators with
the practical information they need. Everywhere I’ve been I’ve learned from
other parents and educators, as well as from those on the spectrum who have
shared their experiences. More recently, I’ve created autismcollege.com, so that
those who cannot get to conferences can still access my practical information
and training online.
Educators and other professionals will find useful nuggets to help them with
their students or clients. This book is written simply, with practical tips, in order
to point the reader in the right direction for more information, if needed.

Adults who have been recently diagnosed will find information that is useful
in different chapters. Hopefully, this book will provide some insight and support.
People who come across those who have ASD in their line of work can read
the chapters they think will help them most. In Chapter 8, I have included a
section that is helpful for the general public who may occasionally come across
someone with autism: babysitters, recreation leaders, emergency responders,
storekeepers, scout leaders, bus drivers . . . basically anyone who works with the
public. With a diagnosis rate in the United States estimated to be as high as 1 in
50 schoolchildren, everyone knows someone whose life is touched by autism,
and your clients, customers, and coworkers are some of them.
Back to Jeremy—today he is twenty-five. After graduation, he attended
some community college classes and coauthored a book, A Full Life with
Autism: From Learning to Forming Relationships to Achieving Independence
(Macmillan, 2012). He became a Young Leader for the Autistic Global Initiative
of the Autism Research Institute. In the last year, Jeremy began creating
beautiful abstract paintings. In 2010, his therapists and I realized that Jeremy has
synesthesia; he see letters and words in color, and he perceives and feels
emotions as different colors. In 2012, Jeremy began to type out and describe his
dreams, and his desire to learn how to paint. Recently, he created Jeremy’s
Vision to encompass his writing, painting, consulting, and advocacy work. As
our children grow, it is important to find those areas of strength and interest to
help them learn and enjoy life, and to find mentors to help them develop their
areas of strength. Jeremy’s story is an example of how people on the spectrum
can always learn and discover new interests—just as neurotypicals do. It is
important that they be given the opportunity to do so.
Yet, despite all of his accomplishments, life has not been easy for Jeremy.
He still requires twenty-four-hour support. He has many sensory-motor
challenges. He is working toward moving out into supported living. He wishes
he had more friends. But, all in all, life is good—he can communicate by typing
and he is learning to be more interdependent—as well as independent. And now
he has his painting, which is opening new doors for him.
Parents, this book was written with the goal of saving you countless hours of
precious time and heartache. You have enough to do! Hopefully this book will
also inspire you, inform you, and motivate you. Knowledge is power, so use this
guide to empower yourself. Keep in mind that you are not alone. The autism
community is here to help you.

ABOUT THIS BOOK
I have used the term “autism spectrum disorder” (ASD) throughout this book to
mean anyone considered on the autism spectrum. If used, the word “autism”
means autism spectrum disorder. When speaking specifically about people with
Asperger’s syndrome, I have used “Asperger’s,” although I realize that the term
technically no longer exists as a diagnosis. As there are more males diagnosed
with ASD, I have most often used the pronoun “he.” I would ask the reader not
to be put off by the third person construction, as in “the individual” or “the
person.” Most resources are listed in the main text; others are in the Resources
section.
This book has been compiled to serve an informational purpose. None of the
information is meant to be diagnostic, legal, medical, or educational advice. Any
treatments, therapies, or interventions should be discussed with a competent
professional. Please consult your physician before changing, stopping, or starting
any medical treatment. Laws and regulations change, and so the reader should
get professional advice concerning matters of legal rights in terms of educational
provision, health benefits, and any other benefits. The author and publishers
disclaim, as far as the law allows, any liability arising directly or indirectly from
the use, or misuse, of the information contained in this book.
The publishers have made every reasonable effort to contact the copyright
owners of the extracts reproduced in this book. In the few cases where they have
been unsuccessful, they invite copyright holders to contact them directly and
corrections can be made in reprints.
For more information about the author,
visit chantalsicile-kira.com.

1
The Myths and History of Autism Spectrum Disorder
Beyond the world of what and why
Beyond the reasons and the concrete,
The “abstract” lies with a richer glory
Somewhere in imaginations deep!
—TITO RAJARSHI MUKHOPADHYAY, The Mind Tree
TWENTY-ONE years ago, we were in the local doctor’s office in a small village in
England, where we had just moved. I was trying to explain to the receptionist
why my three-year-old was obsessively walking around and around the waiting
room, touching each chair he passed, whether it was empty or not, and obviously
disturbing the other patients sitting in those chairs. We’d been waiting almost an
hour to see the doctor. “My son is autistic. He can’t wait any longer,” I said. The
receptionist replied, “Well, if he is artistic, have him draw. Here are some
crayons to keep him busy.” As she walked away, she mumbled under her breath
about how badly behaved some children were, and how impatient the parents.
Myths About Autism Spectrum Disorder
Sad but true, this type of misunderstanding still occurs in some places. However,
as the number of people diagnosed escalates to epidemic proportions, most
people today have come across autism spectrum disorder (ASD). Still, as ASD is
mysterious and has attributes that can be strange, awe-inspiring, and
unexplainable, there are many myths that abound. Here are a few of them.
Myth #1: The Rain Man Myth—Everyone with ASD Is an Autistic Savant

In the movie Rain Man, Dustin Hoffman plays Raymond, a young man who has
autism. He goes on a road trip with his brother, played by Tom Cruise. Raymond
has an incredible gift with numbers. His brother discovers this, and takes him off
to Las Vegas so Raymond can gamble and win some money. It is true that some
individuals with autism have great skills in a particular area. Take Stephen
Wiltshire, who can draw and paint accurate detailed representations of cities,
sometimes after only having seen the city during a twenty-minute helicopter
ride.
There are certainly individuals with ASD who have extraordinary talent. In
fact, many may have talents yet untapped due to the challenges they face in
communication, social relationships, or sensory overwhelm. Often what we see
as an obsession is actually an indication of a talent that lies hidden and could be
developed. Usually, those with autism have an inconsistent profile where they
excel or do well in one area and have low performance in others. For example,
years ago I worked with a young man who had a gift for memorizing and was
infatuated with sports. On my first day of work at Fairview State Hospital, he
came up to me and said, “I used to be a sports newscaster. Ask me any question
about sports and I’ll fill you in.” He had memorized the pertinent statistics for all
the World Series from the previous two decades. We talked sports and I did find
him a bit odd. For a few minutes I entertained the thought that he was another
employee, thinking what a dedicated person he must be to quit working for the
media and join the staff at this hospital. Then I looked on my roster and realized
he was one of my students for functional living skills. He definitely had a talent
for sports statistics, but hadn’t yet learned how to dress himself independently or
tie his own shoes. It is this discrepancy in ability level that can make life difficult
for those on the spectrum. Yet, a person’s strengths can be used as the basis for
helping him learn practical life skills as a child and identify possible
employment opportunities as he grows older.
Myth #2: Everyone Who Has ASD Is a Genius
It is true that some people with ASD are geniuses, but not everyone is. Thomas
Jefferson, it appears, had characteristics of Asperger’s syndrome, within the
range of modern diagnostic criteria. Others such as Beethoven, Isaac Newton,
and Einstein have all been mentioned as famous people who could have been
diagnosed as on the spectrum. However, for every person with ASD who is a
genius, there are many more who appear to be mere mortals like ourselves. What

is important is to give opportunities to all individuals to discover any hidden
talents, or at least to reach their potential, whatever that may be.
Myth #3: Those Who Are Nonverbal Are Unintelligent
First of all, because of the nature of ASD, it is difficult to ascertain the cognitive
level of people on the spectrum. Some or all of their senses are one hundred
times more sensitive than others, and therefore they process the environment
differently from neurotypicals (i.e., individuals considered to be “normal”).
Secondly, more and more it is being recognized that many with autism have
challenges with the “output”; that is, they may hear and understand what is being
said (the “input”), but they are unable to respond verbally. Providing alternative
means of communicating can be life changing for many.
People who are unable to speak, but have learned to type or write
independently, express the difficulty they have in controlling their motor
planning—that is, sending signals to their muscles—much like people who have
had strokes. In his book The Mind Tree, Tito Rajarshi Mukhopadhyay explains,
“Of course from my knowledge of biology I knew that I had voluntary muscles
and involuntary muscles. I also knew that my hands and legs were made of
voluntary muscles. But I experimented with myself that when I ordered my hand
to pick up a pencil, that I could not do it. I remember long back when I had
ordered my lips to move I could not do it.”
Lastly, if you start with the perception that someone is unintelligent
(considered “mentally retarded”), the expectations for that individual aren’t
going to be very high, and he will never be given the opportunity to reach as far
as he can go. Better to hope he’s a genius and be disappointed than never to have
given a person the benefit of the doubt. Always presume competence.
Myth #4: Everyone Who Has a Symptom of ASD Has ASD
If a person has one or two characteristics of ASD, it does not necessarily mean
he has ASD. As explained in Chapter 2, it is the number and severity of deficits
in the areas of social communication and social interaction, as well as restricted
repetitive patterns of behaviors, interests, or activities that cause concern. That is
why it is important to consult with a medical professional who is familiar with
diagnosing ASD.

Myth #5: All Individuals with Autism Need to Be Cured or Become Neurotypical
There are many individuals who have the label of “autism” (or “Asperger’s
syndrome”) who are brilliant and functional and clearly don’t need our help. In
fact, many of these people are responsible for inventions that make
improvements in all our lives or artistic creations that make the world a more
enjoyable place to live. This is neurodiversity at its best. This book is not aimed
at trying to change those individuals or to make them more neurotypical. This
book is intended to help those who are suffering mentally, physically, or
emotionally because of their autism or because of how they are treated due to
their autism.
FOOD FOR THOUGHT
Even People with Autism Can Change
Over the years, I have read enough to know that there are still many parents, and
professionals, too, who believe that “once autistic, always autistic.” This dictum has
meant sad and sorry lives for many children diagnosed, as I was early in life, as
autistic. To these people it is incomprehensible that the characteristics of autism can
be modified and controlled. However, I feel strongly that I am living proof that they
can.
—Temple Grandin and Margaret M. Scariano, Emergence: Labeled Autistic
Myth #6: There Are No Dramatic Improvements to Be Made in Individuals with Autism Who Are Suffering
or Need Help
Tremendous advances have been made in the field of ASD over the last decade.
Granted, there is still no magic pill that “cures” everyone, and that shouldn’t be
the goal for all on the spectrum. However, there are cases of children who were
diagnosed as clearly having ASD, and who are now considered to be
neurotypical or symptom-free by professionals due to therapies, treatments, and
dietary interventions they have received. Some of these cases have been
documented in books and in blogs and videos on the Internet. There are also
accounts written by people who have recovered significantly from ASD (some
of the classics are Nobody Nowhere and Somebody Somewhere by Donna
Williams, Emergence: Labeled Autistic by Temple Grandin and Margaret M.
Scariano, and Thinking in Pictures by Temple Grandin). Recovery means that

they have overcome some of the symptoms they had that made it difficult for
them to live full and successful lives in a world created by neurotypicals.
FOOD FOR THOUGHT
Does Autism Need to Be Cured?
Perhaps ethical consideration should be given to the concept of “curing” autism.
Saying that autism needs to be cured gives credence to the idea that everyone has
to be “normal,” that there is something wrong with being different. Granted, many
people would find life a lot easier if they did not have ASD. But perhaps those who
have extraordinary talents would not have those gifts, either. Would Beethoven have
created his Ninth Symphony? Would Einstein have come up with his theory of
relativity? Temple Grandin (who has designed one-third of all the livestock-handling
facilities in the United States) believes that her talent for solving concept problems is
due to her “ability to visualize and see the world in pictures,” which can be attributed
to having ASD.
Jerry Newport is a fifty-two-year-old author with Asperger’s syndrome, and was a
speaker at the 2001 National Conference on Autism hosted by the Autism Society of
America. His speech was titled “Every Child with Autism Must Become a Success,”
and was inspired by his concern about the “unrealistic and divisive notion in our
community that becoming normal is the only and optimal goal for our consumers.” He
said, “I will never be normal. I have become a success. I have acquired enough self-
esteem to do my best in every endeavor. That is what former UCLA basketball coach
John Wooden calls success. I will focus on how we can teach all of our children to
have self-esteem, make the most of who they are, and lead full lives, normal or not.”

Myth #7: People with ASD Have No Emotions and Do Not Get Attached to Other People
It is true that many people with ASD show emotions in a different way from
neurotypicals. However, just because a person does not show emotions in the
way we are used to seeing them exhibited does not mean that they don’t have
feelings. One only has to read accounts by people with autism to realize that
some individuals may express emotions differently (Look Me in the Eye by John
Elder Robison; Nobody Nowhere by Donna Williams) or are unable to show
emotion because they are not in control of their muscles or motor planning (The
Mind Tree by Tito Rajarshi Mukhopadhyay).
It is very clear from reading books by people with autism (Asperger’s from

the Inside Out by Michael John Carley; Life and Love: Positive Strategies for
Autistic Adults by Zosia Zaks; Your Life Is Not a Label by Jerry Newport;
Pretending to Be Normal by Liane Holliday Willey) that they are capable of
forming attachments with other people, and do so. Some people with autism
date, get married, and have children, just as we do. Perhaps they are less
expressive than others about their feelings or express them differently, but that
does not mean they are not attached to others. Many on the spectrum express the
desire to have friends; they just don’t know how to go about making them in the
way neurotypicals do.
Myth #8: Autistic People Are Violent
Some individuals with autism have “meltdowns”—expressions of frustration at
themselves or others. It’s important to understand that all behavior is a form of
communication, and trying to understand why a person is having a meltdown or
participating in self-aggression is important. It could be that they are in pain and
don’t have any way of communicating this. They may be in sensory overwhelm,
or in the throes of a PTSD flashback. Over time, individuals can learn to self-
regulate. However, there is no connection between planned violence and autism.
In December 2012, an individual alleged to have Asperger’s syndrome as well as
mental health challenges shot and killed young students as well as educators at
Sandy Hook Elementary School. It is important to realize that the shooter was
mentally ill and had many problems. Asperger’s syndrome itself is not linked to
violence—underlying depression or mood disorders, conduct disorders, and
paranoia can be.
The History and Future of ASD
The labels “autism” and “autistic” come from the Greek word autos, meaning
“self,” and were coined in 1911 by psychiatrist Eugen Bleuler. He used the terms
to describe an aspect of schizophrenia, where an individual withdraws totally
from the outside world into himself.
The Early Days: Kanner and Asperger

In the early 1940s, both Leo Kanner and Hans Asperger, pioneers in the field of
autism, used the term “autistic” in their publications (independently of each
other), describing children with the characteristics we recognize today as being
autistic; hence, the label “autism” was born. In 1943, Kanner, an Austrian
psychiatrist based at Johns Hopkins University in America, was the first to
identify autism as a distinct neurological condition, although he could not
specify a cause. In 1944, Asperger, an Austrian pediatrician in Vienna, published
a doctoral thesis using the term autistic in his study of four boys. Both
professionals described children who developed special interests, but also had
deficits in the areas of communication and social interaction. Kanner’s
description was of children with severe autism, with the conclusion that it was a
disastrous condition to have. Asperger’s description was of more able children,
and he felt that there might be some positive features to autism which could lead
to great achievements as an adult. For thirty years, Kanner’s description became
the most widely recognized.
The term “Asperger’s syndrome” was first used by Lorna Wing in a paper
published in 1981, in which she described children much like the more able boys
Asperger had described many years earlier. Unfortunately, Asperger died in
1980, and never knew that a few years later a condition named after him would
become well known worldwide.
The “Refrigerator Mother” Days: Bettelheim
Meanwhile, Bruno Bettelheim, a Hungarian psychotherapist, reared his head in
the mid-to late 1940s, claiming that the source of autism was “refrigerator
mothers”: cold, unfeeling parents who pushed their children into mental
isolation. Bettelheim had spent 1943 and 1944 in concentration camps, and he
likened the mental isolation of autistic children to that of the prisoners of war
released from such camps after World War II.
Bettelheim eventually moved to the United States and became director of the
Sonia Shankman Orthogenic School in Chicago, where he was lauded for many
years internationally. Sadly, his theories were widely accepted for two decades,
though eventually his school fell into disrepute. Thanks to him, for many years
autism was considered a mental illness (as opposed to a developmental
disability), leading to limited treatment options for these children. Even as late as
the early 1990s a few civilized nations (namely France and Switzerland) still

considered autism a mental illness, offering psychoanalysis and psychiatric
hospitals as the primary treatment.
In 1997, The Creation of Dr. B: A Biography of Bruno Bettelheim by Richard
Pollack was published. Pollack, whose younger brother attended the Orthogenic
School where Bettelheim was director, conducted extensive research for his
book. He discovered that before emigrating to the United States, Bettelheim had
worked in the family lumber business and earned a degree in art history, and in
fact did not have any qualifications to run a school or theorize about the causes
of autism. Pollack also revealed that as director of the Orthogenic School,
Bettelheim was known for his volatile, sadistic nature. He terrorized and beat the
children, and treated the parents with disdain, blaming them for their children’s
problems and only allowing them infrequent visits.
FOOD FOR THOUGHT
Shades of Bettelheim
My son was born in Paris, France. Having worked with individuals with ASD in the
United States, I recognized early on that he had autistic tendencies. We sought help
and guidance, and although the professionals denied he had autism, they sent us to
a psychoanalyst. The psychoanalyst had plenty of Bettelheim books on her shelves,
yet was quick to explain that she did not subscribe to Bettelheim’s “refrigerator
mother” theory. However, after a few sessions of psychoanalysis, it was decided that
my son had suffered separation issues from breast-feeding. This the analyst gleaned
from watching him spin round objects (which reminded him of his mother’s breasts)
and chase after one that he had “lost” when it fell and rolled under a piece of
furniture.
A Huge Step Forward: Rimland
We owe the dramatic change in psychiatry’s perception of autism to Bernard
Rimland, PhD, a psychologist and father of a son with ASD. In 1964, Rimland
wrote Infantile Autism: The Syndrome and Its Implications for a Neural Theory
of Behavior, insisting that autism was a biological disorder, not an emotional
illness. This book influenced the choices that were made in treatment methods
for autism. Rimland, who passed away in November of 2006, was the founder of
the Autism Society of America (ASA) (autism-society.org), the first parent-

driven organization to provide information and support to parents and
professionals. He also founded the Autism Research Institute (ARI)
(autismresearchinstitute.com) in 1967, creating a worldwide network of parents
and professionals concerned with autism. ARI, now headed by Dr. Stephen M.
Edelson, conducts research, and disseminates the results of research, on the
causes of autism and on methods of preventing, diagnosing, and treating autism
and other developmental disabilities.
Dr. Rimland was very concerned about the sudden rise of autism in the
1990s and was interested in research on any possible connection between autism
and vaccines containing mercury. He tracked the increase of late onset (i.e.,
regressive type) autism. ARI helped many families with autism in their quest to
treat their children’s medical and behavior challenges with biomedical
interventions. Defeat Autism Now! (DAN!) started during those years, training
clinicians in using biomedical interventions, which have helped many. Dr.
Rimland was also interested in research on various dietary treatments, such as a
ketogenic diet, vitamin/mineral supplementation, and a gluten-free/casein-free
diet. (Note of interest: Rimland was technical adviser for the movie Rain Man.)
Increase in the Number of Books and Websites by Those with Autism
Another important development is the increase in the number of websites
created, blogs written, books authored, and curriculum developed by those who
have ASD (for example, Temple Grandin, John Elder Robison, Valerie Paradiz,
Brian King, Daniel Tammet, Judy Endow, Lynne Soraya, Michael John Carley,
Liane Holliday Willey, Donna Williams, Stephen Shore, Jesse A. Saperstein,
Zosia Zaks, and Jerry Newport). The insights the authors share about what
sensations they are feeling, why they act the way they do, and what has helped
them in their struggles give us a glimpse of what it can be like to have ASD and
how we can help children on the spectrum.
In recent years, there have been more published writings by individuals on
the spectrum who are unable to speak but who still have a lot of information to
share, such as Sue Rubin; Tito Rajarshi Mukhopadhyay; my son, Jeremy Sicile-
Kira; Peyton Goddard; D. J. Saverese; and Ido Kedar. Such accounts and their
advice are invaluable to us in trying to understand the behaviors of individuals
who are unable to communicate about themselves. Although it must be borne in
mind that these experiences are personal, there are many similarities that these

writers share that can guide us in helping those unable to speak for themselves.
Increase in Numbers
Another change in recent years is the dramatic rise in the number of individuals
diagnosed with ASD, now said to be reaching epidemic proportions in the
United States and in other countries as well. In the 1980s, autism prevalence was
considered 1 in 10,000. In March of 2012, the Centers for Disease Control and
Prevention (CDC) Autism and Developmental Disabilities Monitoring (ADDM)
Network released estimates that 1 in 88 children had been identified as having
ASD. These figures were based on data collected in 2008. Then, one year later in
March of 2013, the CDC released newer estimates that 1 in 50 American
schoolchildren have autism.
The dramatic rise in autism was first reported in the 1990s, and continued
into the 2000s. A U.S. Department of Education study from 1992 to 1997
reported a 173 percent increase in the number of children with autism in public
schools, compared with a growth of all non-autism disabilities in the same
population of just under 17 percent. In California, between 1987 and 2002, there
was an increase of 634 percent in the number of people with autism in
California’s Developmental Services System (California Department of
Developmental Services, April 2003). A study conducted in Atlanta showed that
1 in 300 children in metro Atlanta had autism in 1996, a rate almost ten times
higher than the rates from studies conducted in the United States during the
1980s and early 1990s, but consistent with those of more recent studies (Journal
of the American Medical Association, January 2003). Figures from the California
Department of Developmental Services from 1987 to 2007 indicate that the
number of people with ASD grew 1,148 percent. During this same time period,
California’s general population grew 27 percent (State of California, 2007).
Studies in the UK, Iceland, and Japan have all recorded incidence rates of
autism much higher than previously assumed. Studies done since 1985 in Europe
and Asia have found that as many as 60 out of every 10,000 children have ASD
(CDC, December 2003). In the UK, in 1979, it was estimated that 35 children in
10,000 would be diagnosed with autism; by 1993, the figure had risen to 91 in
10,000 children, according to the National Autistic Society. (For more on the
prevalence of ASD, see pages 35–39.)

Dramatic Shift in the Age of Onset
Another recent development is a dramatic shift in the age of onset of autism.
According to data compiled by the Autism Research Institute, regressive, or late-
onset, autism cases (in which a baby develops normally and begins to regress
during his second year) currently outnumber early-onset cases by about five to
one. This is in contrast to the 1950s, ’60s, and ’70s, when late-onset cases were
almost unheard of.
Though some of the unprecedented rise in numbers can be attributed to
changing definitions and better diagnosing, ASD is clearly the fastest-growing
disability of the past two decades.
Autism as a Brain-Gut Connection
A possible connection between gastrointestinal dysfunction and autism was first
hypothesized by Andrew Wakefield, a British former surgeon and medical
researcher, in a paper based on twelve children published in the Lancet in 1998.
In his paper, Wakefield explained his hypothesis of a relationship between
childhood gastrointestinal disorders and autism in those given the MMR vaccine,
typically administered to children between age twelve and fifteen months.
Wakefield’s belief was that the three vaccines (measles, mumps, rubella), when
given together, could change the child’s immune system. This would allow the
measles virus in the vaccine to penetrate the intestines, and certain proteins that
escaped from the intestines could extend to and harm neurons in the brain.
Wakefield did not claim he had proved that the MMR vaccine caused autism, but
this is what was interpreted by many.
The role of gastrointestinal dysfunction in patients with autism continues to
be an important topic of research. GI problems can worsen a child’s behavioral
issues—it’s hard to be on your best behavior when you are in pain. More
research is needed on the gut-brain connection, but clearly parents of nonverbal
children need to be aware that their child’s behaviors may be an indication of
underlying gastrointestinal problems that ought to be looked into.
Autism as Neurodiversity
At about the same time as Wakefield’s hypothesis was published, Judy Singer, a

sociologist on the autism spectrum, invented a new word, “neurodiversity,” to
describe conditions like autism, dyslexia, and ADHD. Singer’s goal was to shift
the focus about atypical ways of thinking and learning from deficits and
impairments to diversity, convinced that many atypical forms of brain wiring
also convey unusual skills and aptitudes.
The word “neurodiversity” first appeared in print in a 1998 Atlantic article
by journalist Harvey Blume. In the article, Blume likened neurodiversity to
biodiversity—crucial for the advancement of the human race.
The difference in opinion about autism brings to mind the Indian parable
about the blind men and the elephant. A group of blind men touch an elephant to
learn what it is like. Each one feels a different part, but only one part, such as the
leg or the tusk or the trunk. Each one describes and names the elephant based on
his experience of the part of the elephant he is feeling. Such is the nature of
autism.
The parent of a teenager who is nonverbal, not toilet trained, and
experiences meltdowns will never be convinced that autism is just a brain
difference to be accepted. The parent of a young child who appeared perfectly
healthy and then regressed at age two and has terrible gastrointestinal problems
with ongoing daily bouts of diarrhea or constipation may consider autism a
disease. On the other hand, the parent of a child with Asperger’s who is
independent and academically brilliant may view autism as a gift. The point is,
they are all correct, based on their experience.
Changes in Labels and Definition
Over time, changes in how autism is diagnosed and labeled have occurred. In the
fourth edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV), published in 1994, the labels autism, Asperger’s, pervasive
developmental disorder (PDD), and PDD Not Otherwise Specified (PDD-NOS)
were used, among others. These syndromes, and others that share some of the
same symptoms, were placed under the umbrella term “autism spectrum
disorders.” Though the different ASDs varied in the number and intensity of the
behavioral symptoms they shared, it was still the same three broad areas that
were impaired: social relationships, social communication, and restricted,
repetitive patterns of behavior.
In May 2013, the fifth edition of the Diagnostic and Statistical Manual of

Mental Disorders (DSM-V) was published. Now, the above labels have been
removed—including Asperger’s—leaving only the label of “autism spectrum
disorder,” or autism. Challenges in social relationships and social
communication have been combined under social/communication deficits.
Restricted interests and repetitive behaviors now include mention of sensory
challenges for the first time. For a more in-depth explanation of the DSM-V, go
to page 29.
What remains the same is that characteristics of autism can be present in a
wide variety of combinations. Two people, both diagnosed with the same label
of “autism,” can have varying skills, deficits, and aptitudes. One of them could
be severely incapacitated, the other might appear to be only a bit odd and lacking
in social graces. People with the label of “ASD” can present a wide spectrum of
abilities and deficits. What it all boils down to is that there is no standard type or
typical person with ASD, just as there is no standard type of non-autistic or
neurotypical individual.
The Future
Although we still do not know the exact causes of autism, the last few decades
have been encouraging in the wealth of knowledge that has been acquired. Since
the mid-1990s there have been tremendous advances in the field of technology
and medical science. The field of neuroscience has grown tremendously in the
last decade, giving us a greater understanding of the brain, the spinal cord, and
networks of sensory nerve cells, or neurons, throughout the body, and how these
relate to behaviors, reasoning, and emotions—all important to the understanding
of autism.
We are learning more about genetic susceptibility, environmental triggers,
the gut-brain connection, and the timing of exposure during periods of
vulnerability for the developing nervous system.
The growth of parent-and professional-driven ASD organizations, coupled
with the ease of access to the Internet, has ensured a strong lobbying force aimed
at encouraging scientists and politicians alike to devote resources to research
into the causes of ASD and how to help those with the condition. There are
many notable scientists and professionals worldwide who have done much to
advance our knowledge of ASD and continue to do so.
In the last two decades, the number of nonprofit organizations dedicated to

autism has increased dramatically. Cure Autism Now (CAN), cofounded by
Portia Iverson and Jon Shestack in 1995, was one of the largest private funders
of biological research in autism, providing more than $20 million for research
grants, education, outreach, and scientific resources since its inception in 1995.
In 2007, CAN merged with Autism Speaks.
Since its inception in 2005, Autism Speaks, cofounded by Suzanne and Bob
Wright, grandparents of a child with autism, has grown into the foremost
organization in the United States. The National Alliance for Autism Research
(NAAR), founded in 1994, merged with Autism Speaks in 2006. Thanks to the
Autism Society of America (ASA), the Autism Research Institute (ARI), UC
Davis’s MIND Institute, the Organization for Autism Research (OAR), and
many other organizations and selfless advocates too numerous to mention,
research is being funded, findings shared, and information disseminated to help
those with autism of different ages and ability levels, and their families.
Among the newer national nonprofits are Talk About Curing Autism
(TACA), National Autism Association (NAA), and Autism One. There are more
organizations founded and directed by individuals on the spectrum, such as the
Autistic Global Initiative (AGI), the Global Regional Asperger Syndrome
Partnership (GRASP), ASAN, and AUTCOM.
The Special Needs Network (SNN) has been very effective in impacting
public policy in California and in providing resources and information to the
underserved families in South Los Angeles. Community-based organizations
such as SNN are necessary to respond to the needs of the disenfranchised
communities of color that often fall between the cracks. Studies show these
children are often diagnosed later than their non-minority peers, misdiagnosed at
a higher rate, labeled emotionally disturbed, and often overmedicated. Many are
denied insurance benefits, medical care and treatment, directly impacting their
prognosis.
Although more research is needed, it is important to note that the discovery
of many successful treatments, therapies, and strategies has been due to a strong
collaboration between parents and medical professionals. Together they have
formed a strong partnership, widening the prism through which autism is viewed
and treated from the medical perspective. To them we owe a resounding thank-
you.

2
What Is Autism Spectrum Disorder and How to Know
If a Person Has ASD
All people like to put things into categories. I do so with my buttons, ribbons,
and bits of colored glass. As for people, I had only ever truly felt there were two
categories: “us” and “them.” Most people see things in these terms, too, but
with different and more value-laden definitions.
—DONNA WILLIAMS, Nobody Nowhere
THE day my son’s diagnosis was confirmed is indelibly etched on my mind. I was
in the TV studio where I worked producing a soap opera when the operator
announced that I had a call waiting from the hospital. Although I felt sure that
my son was not developing properly, the medical professionals had up until now
refused to listen to my concerns.
Somehow I held it together while the dramatic love scene was being taped,
gave my nod of approval to the director, and headed for my office to take the
call. When I was given the news about my son, I felt stunned, shocked, and
unable to breathe. Although I had felt there was something amiss, I had wanted
to be proven wrong. Now it was acknowledged and I had to deal with that
reality.
I went back down to the studio floor to finish taping the day’s show.
Somehow I got through it. Over the next few days, it was a relief to go to work
and throw myself into the make-believe drama, which now seemed quite
ordinary compared to the real-life emotional drama I was living. After many
weeks and many tears of frustration and sadness I thought that perhaps now, with
a diagnosis, we could move forward.

Why Seek a Diagnosis?
If you have any concerns about your child, it is important that you consult with a
medical professional who is experienced in assessing ASD. Hopefully, you will
have worried needlessly. But if not, it is important that you have a diagnosis as
early as possible, in order to access services. Research shows that early and
intensive treatment works best in helping these children make sense of their
world. Research shows that the earlier a child is started on a course of treatment
or therapy, the better the prognosis. However, research also shows that our brains
have neuroplasticity, which means that they continue to reorganize themselves
by forming new neural connections throughout life. So, no matter the age,
learning can still take place, and parents of older children should not be
discouraged from trying different approaches to help their child.
If you are an adult and think you may be on the autism spectrum, just
knowing there are others like you can bring an extra dimension to your life.
There are now many nonprofit organizations run by adults on the spectrum.
These are great places to get information or join online and in-person groups to
meet others who may have some of the same strengths and challenges you
experience.
In the past, people were hesitant about applying a label because the label of
“autism” was permanent and signified that there was no hope or future for that
person. This should no longer be the case. In the last two decades, there have
been many improvements made in the field of autism with many new strategies
and therapies available. Many children with autism can improve and even
recover from any challenges that keep them from living productive and happy
lives. We are also learning to identify the strengths that many on the autism
spectrum have, and how to help each individual build on his or her talents.
Your Label to Use or Not
Having ASD diagnosed can open doors for you that would otherwise be closed.
Your child may be eligible for early intervention services and therapies from
local agencies, treatment under medical insurance, and qualify for special
education services. It will also allow the parent and professional to search out
more knowledge on what to do, using the label as a starting point to gather

information. However, you must remember that you, as the parent or the person
with ASD, own the label. It is up to you to use it or disclose it when it is helpful,
or not to use it if you are uncomfortable doing so, or if you feel it is not helpful
or necessary. It is your information and your choice.
Be aware also that over time, the diagnostic criteria change, and the opinion
of the experts as to what those criteria should be differs as well. So although a
diagnosis is helpful and necessary to access services, as a parent you would do
better to focus on the behavioral characteristics that tell you more about the child
and how to help him than to get hung up on the diagnosis and what it means.
Sometimes it may take a long while for an official diagnosis to be reached.
You will need the diagnosis to access services from government agencies;
however, as a parent there are things you can be doing to help your child while
you are waiting. Read Chapter 6, on family life, for suggestions in this area. This
is also a good time to be doing your own research; see Chapters 3, 4, and 5.
Keep in mind that each person is unique, whether he or she has ASD or not,
as Jerry Newport (an adult on the spectrum) reminds us with the title of his book,
Your Life Is Not a Label.
Characteristics of Autism Spectrum Disorder
ASD is considered a neurodevelopmental disability, meaning that it affects the
functioning of the brain. Autism typically appears during the first three years of
life and is thought to be four times more prevalent in males than in females.
If the last two decades have been encouraging in terms of treatments and
research findings, in the next decade we hope to know more about autism as the
technologies used in neuro-imaging improve and more is understood about the
brain–genetics connection. The diagnostic processes of ASD are in a state of
flux and constantly being improved as discoveries are made. What you have here
is a road map of what is currently known and used.
At this point in time, there is no medical test to diagnose for ASD. Any
diagnosis is based on observable characteristics, that is, the behavior that a
person is exhibiting.
Because of the nature of the symptoms, ASD is sometimes difficult to
diagnose at a very early age. If the child is their first, the parents have no
experiences with which to compare. Seeing other toddlers and children develop
differently, they may start to worry. When voicing these concerns to relatives,

friends, or neighbors, the parent will often hear things like, “She’ll grow out of
it.” Sometimes parents will talk to their doctor about their concerns regarding the
child’s lack of verbal communication and eye contact, his failure to respond to
his name, and his obsessive attachment to certain objects.
FOOD FOR THOUGHT
Getting Diagnosed
All the insecurities and frustrations I had carried for so many years were beginning to
slip away. I had not imagined a thing. I was different. So was my little girl. Different,
challenged even, but not bad or unable or incorrect. I understood my husband’s tears
and his fear for our daughter’s future, but I did not relate to them. I knew my innate
understanding of what the world of AS [Asperger’s syndrome] is like would help my
daughter make her way through life. Together, we would find every answer either of
us ever needed.
I had finally reached the end of my race to be normal. And that was exactly what
I needed. A finish—an end to the pretending that had kept me running in circles for
most of my life.
—Liane Holliday Willey, Pretending to Be Normal
In many cases, a baby will develop normally and then start to regress at
around eighteen months. These children are usually easier to diagnose because
of the obvious difference in past and present behaviors to which parents and
professionals can attest from looking at photos, watching videos, and comparing
observations.
Some children have chronic ear infections, others may be showing allergic
reactions. Many have intestinal issues—either chronic diarrhea or chronic
constipation. Or a child may have constant rages and/or sleepless nights.
Often the parents may be concerned because their child is a walking
encyclopedia on a particular topic (such as trains), plays obsessively in the same
way with the same toy, or will eat only certain foods. Perhaps it is the
kindergarten teacher who notices that he does not appear to engage in
conversation with his classmates and has a difficult time with any change in
routine. Or a child may be considered “naughty” at school because of certain
behaviors, and perhaps the parents haven’t noticed anything amiss because he is
an only child, or they think that boys mature less quickly than girls. This may be

true, but it is better to be sure and investigate your concerns.
FOOD FOR THOUGHT
How I Got the Doctor’s Attention
When my son was a baby, I worried because he would sit rather floppily, content to
play with the same toy in the same spot for hours, enabling me to get a lot of my pre-
production work done. When I shared my fears with family and friends, they
inevitably replied, “So he takes after his dad! Not everyone has to be as energetic as
you. He’s a calm baby. Just be happy you can get your work done.” The pediatrician
was not very supportive of my concerns, so I invited him to my son’s first birthday
party. Seeing the contrast between my son and a room full of healthy babies, he was
forced to face the fact that some tests might be in order.
The doctor may be hesitant to jump to any conclusions, because not all
reported observations are necessarily objective and they can be interpreted in
different ways. Everyone knows someone who was a late talker. On the other
hand, a parent may not listen to concerns voiced by a child-care worker, a
teacher, or a neighbor. This is unfortunate because the earlier the diagnosis, the
sooner the intervention, the better the prognosis.
Some people with ASD may reach adulthood without ever having been
diagnosed. They may have always felt as if they were not on the same
wavelength as others socially, emotionally, or sensorially. Perhaps they exhibit
some of the characteristics listed on pages 24–27. In such a case, having a
diagnosis would be useful in putting them in touch with information and
organizations that may be able to help them.
FOOD FOR THOUGHT
Does This Person Have Autism?
Advice to parents: Follow your instincts. You are the expert on your child. Take notes
on whatever behaviors (see below) are of concern by keeping a notebook or a
document listing the behaviors and their frequency. Look at the CDC’s Act Early
website, cdc.gov/ncbddd/actearly/index.html. Check out the developmental
milestones appropriate for your child’s age range. You may want to print it out and
use it as a checklist. This will be useful when discussing with your pediatrician.

Another good site with a speech and language milestone chart is LD online,
ldonline.org/article/6313.
If you have any concerns, voice them to your family doctor. You will need to have
your child seen and evaluated by a good diagnostician in your area who is
knowledgeable about autism. It is better to have your child checked out than to lose
precious time waiting for him to “grow out of it.”
Advice to medical practitioners, educators, and other professionals: Take care
how you voice your concerns, but do voice them. See the website listed above for
developmental milestones if you have concerns about a student. Find out who the
local and experienced diagnosticians are in your area.
Behavioral Characteristics of ASD
A word of caution: This list is not meant to be a diagnostic checklist, but is
intended to give you some ideas of the types of behaviors someone with autism
may exhibit. Remember, it is the number and severity of these behaviors that
may lead to talks with a professional about performing a diagnostic assessment
(see “Diagnostic Criteria” on pages 27–31).
Some of these behaviors are seen on one end of the spectrum (e.g., classic
autism), others on the opposite end (e.g., high-functioning autism, or what was
labeled “Asperger’s syndrome” prior to the release of the DSM-V in May 2013).
IMPAIRMENT OF SOCIAL COMMUNICATION AND INTERACTION
As a baby, does not reach out to be held by mother or seek cuddling
Does not imitate others
Uses adult as a means to get wanted object, without interacting with adult as
a person
Does not develop age-appropriate peer relationships
Lack of spontaneous sharing of interests with others
Difficulty in mixing with others
Prefers to be alone
Has an aloof manner

Little or no eye contact
Detached from feelings of others
Does not develop speech, or develops an alternative method of
communication such as pointing and gesturing
Has speech, then loses it
Repeats words or phrases instead of using normal language (echolalia)
Speaks on very narrowly focused topics
Difficulty in talking about abstract concepts
Lack or impairment of conversational skills
SEEKING OF SAMENESS
Inappropriate attachment to objects
Obsessive odd play with toys or objects (lines up or spins continually)
Does not like change in routine or environment (going to a different place,
furniture moved in house)
Will eat only certain foods
Will use only the same object (same plate or cup, same clothes)
Repetitive motor movements (rocking, hand flapping)
OTHER CHARACTERISTICS
Peculiar voice characteristics (flat monotone or high pitch)
Does not reach developmental milestones in neurotypical time frame or
sequence
Low muscle tone
Uneven fine and gross motor skills
Covers ears

Does not respond to noise or name, acts deaf
Does not react to pain
Becomes stiff when held, does not like to be touched
Becomes hyperactive or totally nonresponsive in noisy or very bright
environments
Eats or chews on unusual things
Puts objects to nose to smell them
Removes clothes often
Hits or bites self (hits head or slaps thighs or chest)
Whirls himself like a top
Has temper tantrums for no apparent reason and is difficult to calm down
Hits or bites others
Lacks common sense
Does not appear to understand simple requests
Frequent diarrhea, upset stomach, or constipation
Many of these behaviors are the person’s responses to how he or she is
processing the immediate environment. The typical meaning behind certain
behaviors is discussed in Chapter 3.
Diagnostic Criteria
With the constant improvements in technology and advances in the field of
science, screening for autism at an earlier age is possible. However, at this point
in time there is not one specific objective or medical assessment that can be
given to a baby, child, or adult to diagnose ASD. Rather, there exist different
medicals tests that can either rule out other conditions or help ascertain whether
or not an individual might have autism.

Medical Tests
The following are suggested medical tests for the purpose of assessing a child
with autism, eliminating other possible reasons for the person’s behavior, or to
see if other specific disorders and developmental disabilities exist. The medical
professional you consult may suggest other tests as well. Keep in mind that after
a diagnosis, other evaluations and assessments will be necessary to give you the
information you need to form a plan of treatment.
Developmental screening. During routine well-child visits, development
screening is a way to tell if a child is learning basic skills when he or she
should be. During developmental screening the doctor observes and
interacts with the child, and asks the parent questions. The doctor is looking
to see how the child learns, speaks, behaves, and moves and if the child has
reached his developmental milestones or not. A delay in any area could be a
sign of a problem. When such a screening—or a parent—raises concerns
about a child’s development, the doctor should refer the child to a specialist
in developmental evaluation and early intervention. These evaluations
should include hearing and lead exposure tests as well as an autism-specific
screening tool, such as the M-CHAT. Among these screening tools are
several geared toward older children.
Magnetic resonance imaging (MRI). Magnetic sensing equipment creates,
in extremely fine detail, an image of the brain. Many advancements
continue to be made in this technology. At the time of this writing, MRIs
are not used for screening for autism, although some research indicates that
MRIs may show differences in the brain resulting from autism.
Electroencephalogram (EEG). An EEG can detect tumors or other brain
abnormalities. It also measures brain waves that can show seizure disorders.
At the time of this writing, there is research indicating that EEGs may
become a useful tool for detecting autism.
Genetic testing. There is a gene test that uses a cheek swab to screen infants
and toddlers for sixty-five genetic markers associated with autism. This test
was developed to be used by families who already have one child with
autism. However, at the time of this writing, this test only identifies an
estimated 10 percent of possible genetic markers. Technology is improving

in this area.
Metabolic screening. Blood and urine lab tests measure how a child
metabolizes food and its impact on growth and development. In particular,
these should be considered when a child appears to be regressing, or other
clinical evidence shows there might be a problem.
Lead level test. Children who have pica (eating nonnutritive substances,
such as dirt) should have their lead levels checked.
Diagnostic and Statistical Manual of Mental Disorders (DSM-V)
The DSM, the medical diagnostic handbook, is in its fifth edition. The DSM is
used to identify and diagnose mental disorders, and to code for insurance
reimbursements. The professional assessing your child will be diagnosing—or
not—depending on the criteria specified in the DSM.
The American Psychiatric Association (APA) released the latest version of
the DSM, referred to as the DSM-V or DSM-5, in May 2013, after ten years of
work on revising the criteria for the diagnosis and classification of mental
disorders. In the DSM-V, changes have been made in the criteria needed for a
diagnosis of ASD. The new criteria is considered more thorough and strict
compared to the older diagnostic criteria, according to the APA. As well, a
reorganization of criteria has taken place. In the DSM-IV, the domains for
autistic disorder included impairments in communication, social interaction, and
restricted interests and repetitive behaviors. In the DSM-V, the communication
and social interaction domains are combined into one, social/communication
deficits. Additionally, a delay in language development is no longer a
requirement for a diagnosis of ASD.
Under the definition of “autism” in the DSM-IV, patients were diagnosed
under four separate disorders: autistic disorder, Asperger’s disorder, childhood
disintegrative disorder, or pervasive developmental disorder not otherwise
specified. In the DSM-V, these separate disorders do not exist. This has created
some controversy among parents and professionals in the autism community,
especially with regard to removing Asperger’s syndrome as a disorder. Those
involved with rewriting the DSM-V definition believe that the individuals
diagnosed with one of the four pervasive developmental disorders (PDD) from
DSM-IV should still meet the criteria for ASD in DSM-V or another, more

accurate DSM-V diagnosis.
In the DSM-V, the diagnostic criteria for ASD is the following:
1. Persistent deficits in social communication and social interaction across
multiple contexts in areas described below, that the individual currently
displays or did in the past:
a. Deficits in social-emotional reciprocity (for example, failure to carry
on a back-and-forth conversation, failure to initiate or respond to
social interaction, not having appropriate social approach behaviors).
b. Deficits in nonverbal communicative behaviors used for social
interactions (for example, abnormalities in eye contact and body
language, lack of facial expressions).
c. Deficits in developing, maintaining, and understanding relationships
(for example, difficulties in adjusting behavior to suit various
contexts, difficulties in sharing imaginative play or making friends).
2. Restricted, repetitive patterns of behavior, interests, or activities as
demonstrated by two of the following, that the individual currently
displays or did in the past:
a. Stereotyped or repetitive motor behaviors, use of objects, or speech
(for example, lining up toys, echolalia).
b. Insistence on sameness, inflexible adherence to routines, or ritualized
patterns of verbal or nonverbal speech (for example, difficulties in
moments of transition, insistence on same food).
c. Highly restricted, fixated interests that are abnormal in intensity or
focus (for example, strong preoccupation with or attachment to
unusual interests or objects).
d. Hyper-or hyporeactivity to sensory input or unusual interest in
sensory aspects of the environment (for example, does not appear to
feel extreme cold or heat, excessive touching or smelling of objects).
It is important to recognize that for a diagnosis of ASD to be given:

1. The symptoms must be present in the early developmental period;
2. The symptoms must be severe enough to cause clinically significant
impairment in social, occupational, or other important areas of
functioning; and
3. The symptoms would not be better explained by intellectual disability or
global developmental disability.
Comorbidity
A person may be diagnosed with ASD and still have other existing medical or
psychiatric conditions. In medical terms, “comorbidity” is the presence of one or
more conditions along with the primary diagnosis. Research indicates that 70
percent of individuals with autism also have one or more comorbid mental
disorders, and 40 percent may have two or more comorbid mental disorders,
according to the DSM-V. For example, an individual with a diagnosis of autism
could well have ADHD, anxiety disorders, and depressive disorders. If an
individual with autism is nonverbal or has low communication skills, observable
signs, such as changes in eating and sleeping or increases in challenging
behaviors, should be considered as possible signs of depression or anxiety.
FOOD FOR THOUGHT
Parents’ Attitude Is Everything
BY MICHAEL JOHN CARLEY
No matter where your child is diagnosed on the spectrum—whether it’s a nonverbal
son or daughter, or a brilliant but awkward kid who doesn’t understand social
nuances—the attitude you have about your child’s condition may actually play a far
bigger role in their development than the diagnosis itself.
Children on the spectrum grow up hearing contrasting messages through the
media, friends, family, etc., and by being in a behavioral minority they are beginning
life at a psychological disadvantage. When they hear words like “cure,” “disease,” or
other words that convey an impression that something is wrong with them, this only
lessens their capacity for confidence and self-esteem. But when they hear messages
of potential, words that talk about what they can do as opposed to what they can’t do,
then there is hope and potential . . . as it would be for any of us.
This is not meant as feel-good, self-help spin or sociologically forced PC

terminology—nor is it meant to invalidate the very real challenges that can often
accompany the diagnosis. It is simply an indisputable notion that if an individual of
any kind is surrounded by a community showing belief in them . . . they have a shot.
Even the most significantly challenged children should be treated in this way because
we still do not know how much they take in. They don’t communicate with us much
so we don’t see any ability therein to hear what we say. But just because we don’t
see it doesn’t mean it doesn’t exist. What parent would risk that?
So how do you accomplish this, especially if you see the diagnosis as tragic?
First off, you find a parents support network. Whether in the form of a face-to-face
monthly meeting organized by a local autism organization, coffee with a fellow parent
of a child on the spectrum, or through an online support group, you will need to vent.
You will need to unburden yourself, and maybe you’ll even need to denounce the
very nature of remaining positive. But to vent as such in front of the child will do
harm.
Second, take care of yourself. There’s a reason why, on airplanes, they tell you
in the safety demonstration to put the oxygen mask on yourself first before putting it
on your child. What this translates to is simply the old adage that you can’t help
others until you first help yourself. Common wisdom applies herein as well:
exercising regularly; eating healthy; not letting your job/daily duties get to you too
much; and if you’re in a reciprocated romantic relationship, get away for a weekend
every once in a while. If you’ve accomplished the first step of finding a community of
fellow parents, such groups often arrange to trade babysitting services.
Third, study the history. What is a hard concept to grasp without some work is
the notion that prognoses keep getting better. Amid all the political infighting that
exists in the autism world, incredible progress has been made in our collective ability
to educate young people on the spectrum. Few of the children diagnosed from the
late 1990s to the early 2000s met their initial expectations: The vast majority well
exceeded them because we all kept getting smarter. Odds are that your child will go
beyond the first predictions, too.
Fourth, surround yourself with fellow positive thinkers. Other parents who
lament, “My son/daughter will never . . .” are not thinking clearly. Other parents who
say, “I love my child, but I hate what he has” are simply trying to justify their harmful
attitudes (not to mention the mixed messages they may be inadvertently sending to
their child). Loved ones who say hurtful things are simply not as educated as you,
and fellow shoppers at the supermarket who cast critical eyes on your parenting are
to be relegated to the mental trash bin.
But those with whom you can share the love and appreciation you have for your
child are to be treasured. Life will be different for you, and life will be harder, not
easier, for your child; but great, big-picture opportunity exists herein. Find your
community.
Michael John Carley is the founder of GRASP (grasp.org), the executive director of
ASTEP (asperger-employment.org), and the author of Asperger’s from the Inside
Out. A former diplomat who worked in places such as Bosnia and Iraq, he and his
then-four-year-old son were diagnosed with Asperger’s syndrome in late 2000. He
lives in Brooklyn, New York, with his wife and two boys.

3
What Causes Autism Spectrum Disorder and Why Do
People with ASD Act the Way They Do?
Men and women are puzzled by everything I do. My parents and those who love
me are embarrassed and worried. Doctors use different terminologies to
describe me. I just wonder. The thoughts are bigger than my expressions to get a
shape. Every move that I make interprets my helpless way to show how trapped I
feel in the continuous flow of happenings. The happenings occur in a way that
shows the continuity of cause and effect. The effect of a cause becomes the cause
of another effect. And I wonder . . .
—TITO RAJARSHI MUKHOPADHYAY, The Mind Tree
IT used to be that autism was pretty rare. Eighteen years ago, if I mentioned the
word “autism,” people would have heard of it, but nobody had ever encountered
it except at the cinema by watching Rain Man. Now it seems everyone is related
to or lives next door to someone with ASD. More recently I had to take my son
to the emergency room at the local hospital. While we were sitting in the waiting
room one woman looked at us and turned to her companion, saying, “Seeing that
young man over there reminds me, how is your friend’s nephew doing, the one
with autism?” Then we got called in for X-rays and the technician looked at
Jeremy and said, “So, what school district do you live in? Were you happy with
his program? My son’s ten and we finally got what he needed at school for him.”
When we got home, I called the airline to confirm reservations for a summer
family vacation. When I told the reservation clerk I would be traveling with
someone with autism and needed to make special seating arrangements, she said,
“Don’t say another word, dear, I know just what you need. My cousin’s son has
autism. . . .”

It’s an Epidemic
There has been much discussion over the past fifteen years about the reason for
the rise in the numbers of those diagnosed with ASD in the United States, the
UK, and other parts of the world. Some have argued that ASD is diagnosed
better and earlier, resulting in higher figures than before. However, now it is
generally agreed that there is a true increase in the number of children with
autism. In order to have a better understanding of what is actually occurring, a
close look at some official numbers and reports is in order.
Numbers in the United States
Figures from the California Department of Developmental Disabilities are often
quoted because of the strict record-keeping necessitated by state laws. California
is required under the Lanterman Developmental Disabilities Act to provide
services to persons with developmental disabilities. These services are provided
through regional centers that must keep accurate data on the number and type of
clients they serve. The criteria for diagnosing cases are strictly adhered to, and
have not changed over time.
The Department of Developmental Services is required (for budgetary
reasons) to report to the legislature the incidence of autism and pervasive
developmental disorders compared with other developmental disabilities. In
March 1999, the department reported to the legislature that the numbers of
persons entering the system and receiving services had jumped 210 percent
between 1987 and 1998 (“Changes in the Population of Persons with Autism and
Pervasive Developmental Disorders in California’s Developmental Services
System: 1987–1998”). The California legislature was surprised and concerned
by these findings.
Debate immediately started among autism experts, government officials, and
parent-driven organizations on why such high figures were being recorded in
California, as well as in the UK and other parts of the world. Some discounted
the increasing rates of ASD, attributing the rise to better and earlier diagnosis, a
change in definition that now encompassed the more able and those with
Asperger’s, and a migration to certain areas for better services.
The legislature therefore commissioned the University of California’s
Medical Investigation of Neurodevelopmental Disorders (MIND) Institute to

investigate these findings. In October 2002, Dr. Robert S. Byrd and his
colleagues reported back with results that made headlines all around the world.
Byrd and his colleagues found that the huge jump in autism rates from 2,778
in 1987 to 10,360 in 1998 could not be explained by changes in the criteria used
to diagnose autism, or by an increased migration to California of children with
autism. Nor could it be explained by statistical anomalies. The report also found
that parents’ reports of regression at an early age did not differ between the two
different age groups studied; however, more parents of the younger group
reported gastrointestinal symptoms in the child’s first fifteen months of life.
Dr. Byrd’s study clearly showed a tremendous increase in autism in
California for some unknown reason.
Meanwhile, figures released by the California Department of Developmental
Services show that the trend continues. From 1987 to 2007, the number of
people with ASD grew 1,148 percent. This is significant when compared to
increases of 66 percent for epilepsy, 73 percent for cerebral palsy, and 95 percent
for mental retardation. During this same time period, California’s general
population grew 27 percent (State of California, 2007).
The federal government is also concerned about the increase of autism
diagnosis and what it really means. This concern is reflected in time, money, and
energy now being spent on finding out all we can on ASD. Some examples of
what the government is doing:
More and more money has been allocated to autism research by the
government. The National Institutes of Health spent an estimated $169
million on direct autism research in 2012, compared with $81.3 million on
autism research in fiscal year 2003 and $9.6 million ten years earlier in
1993. However, $169 million represents only 0.55 percent of the total
national NIH budget of $30.86 billion. In fiscal years 2007 and 2008, NIH
began funding the eleven Autism Centers of Excellence (ACE). The ACEs
are investigating different aspects of autism, including early brain
development and functioning, social interactions in infants, rare genetic
variants and mutations, associations between autism-related genes and
physical traits, possible environmental risk factors and biomarkers, and a
potential new medication treatment.
In 1998, the Centers for Disease Control and Prevention included autism in
the developmental disabilities surveillance program based in Atlanta and

then began to monitor the prevalence of ASD in numerous states, and will
continue to do so for many years. The Study to Explore Early Development
(SEED) was designed to be a multisite collaborative study on autism and
other developmental disabilities. SEED is looking at behavioral, physical,
and medical conditions, as well as risk factors.
The Coalition for Autism Research and Education (CARE), the
Congressional Autism Caucus, was started in 2001 and it is still going
strong. It is the first Congressional Member Organization to focus on ASD,
and has members from most states. Its focus is to teach members of
Congress about ASD and to improve research, education, and support
services for people who have ASD.
The Combating Autism Reauthorization Act, Public Law 112-32, signed
into law in September 2011 by President Obama, continues important
investments in research, early detection, supports, and services for children
and adults on the autism spectrum. It also reauthorized the Interagency
Autism Coordinating Committee (IACC), a federal advisory committee that
includes both federal and public members. The IACC coordinates all efforts
within the Department of Health and Human Services concerning autism
and advises the Secretary of Health and Human Services.
The Institute of Medicine (IOM), a branch of the National Academy of
Sciences, established an independent expert committee to review
immunization safety concerns about a possible vaccine–autism connection
Elsewhere in the World
In Canada, the rate of ASD was 1 in 286 for the years 2000–2001, an average
based on figures from the provincial departments of education. They also
reported an average increase of 63 percent over a two-year period (Autism
Society Canada). Findings from the National Epidemiologic Database for the
Study of Autism in Canada (NEDSAC) published in March 2012 showed
changes in the prevalence of ASD in Newfoundland and Labrador, Prince
Edward Island, and southeastern Ontario. Data was taken between 2003 and
2008. The prevalence of ASD increased in all regions studied and in all age
groups. The percent increases in prevalence ranged from 39 to 204, based on a

comparison of the first and last years of the study period.
According to the National Autistic Society (NAS) in the UK, the indication
from recent studies is that a prevalence rate of around 1 in 100 is a best estimate
of the prevalence of ASD in children. No prevalence studies have been carried
out on adults. This is in contrast to the 1993 estimate of 91 in 10,000 children
and 35 per 10,000 in 1979.
What Causes Autism Spectrum Disorder?
In response to the question, “What causes ASD?” I am sorely tempted to reply,
“We still don’t know,” and move on to the next chapter. However, there have
been many advances made in research in recent years. Although we have no
clear-cut answer, we have some plausible hypotheses, and scientists, with the
help of new technology, are beginning to make connections that will eventually
help those seeking treatment.
What Does Not Cause ASD?
It is infinitely easier to talk about what we know does not cause ASD. It is
known for a fact that ASD cannot be “caught” through osmosis, dirty doorknobs,
or bad parenting. Other than that, nothing can be said for sure.
What We Think We Know
In the ten years since this book was first published, much research has been done
regarding what causes autism, and how best to help those needing treatment. In
one sense, it feels like Plus ça change, plus c’est la même chose (The more it
changes, the more it stays the same), because we still don’t know what causes
autism and we can’t prescribe one magic bullet for all.
It’s becoming clearer and clearer that we should be talking about “autisms”
and not one autism, because although people may share the same label, they can
be completely different. Thus the reason there are discussions about whether or
not autism is a disease that needs to be cured, or a brain difference—a
neurodiversity—that should be celebrated as a gift. The answer is that it depends

on the individual. As is often said in the autism community, “When you’ve seen
one autistic person, you’ve seen one autistic person.”
However, advances are being made in neuroscience, genetics, and the study
of environmental factors to help us better understand both causes and treatment
options.
Where to Get Updates on the Latest Research
What follows is by no means an exhaustive look at the science behind the causes
of autism. Research studies are being published often. The interested reader can
follow on a regular basis the latest discoveries and ongoing research. As
mentioned earlier, it is best to read the actual study or report than to read
summaries and news releases. In order to gain an understanding of this highly
controversial topic, please consult a wide variety of websites and journals such
as those listed below and form your own opinions:
Use the National Library of Medicine Pubmed (nlm.nih.gov) search engine
to find abstracts of any research articles you are interested in reading
concerning autism. There are tutorials on the site with instructions for more
advanced search techniques. Some abstracts will link you to the full article
on the website of the journal where it is published. Some journals will
provide full text for free, while others require a subscription or fee.
Autism Speaks has information on its website (autismspeaks.org), and you
can sign up to receive a biweekly science digest.
The Autism Research Institute (ARI) website (autism.com) has information
on various research studies. They also publish a quarterly newsletter with
summaries of current research.
FOOD FOR THOUGHT
Developing a Critical Mind
The reader needs to be aware that, unfortunately, just as in every field, there are
politics and money at stake in autism and science. Each organization and
government body has its own interpretation of research studies and what they mean.

Scientists are quick to point out flaws in studies by other scientists that do not report
findings they agree with. Sometimes they are right. This means that we all need to
develop critical thinking skills and an analytical mind-set.
Never rely on the media to tell you the full story on research findings. For
example, in 2001, media reports and newspaper headlines and articles were saying
that a report published by the Institute of Medicine (IOM) said that no link had been
found between autism and vaccinations. Also stated in the report (but left
unmentioned by the media) was that a possibility of a connection between the MMR
(measles-mumps-rubella) vaccine and autism could not be disproved for a small
number of children. However, when the media quoted that same IOM report in 2004,
this possibility of a connection between vaccines and autism was mentioned as one
of the reasons why the IOM was again examining this issue.
To form your own educated opinion on any topic, always go straight to the
horse’s mouth. With the Internet, access to information is easy, cheap, and available
to all. Unfortunately, it is also easy to spread misinformation. Make sure you are
reading from websites that clearly state their sources, and make sure they are
reputable ones. When looking at research studies, go to the original source. For
those who are computerless, your library awaits you.
A Look at the Advances in Research over the Last Decade
It appears most likely that there is a genetic predisposition interacting with
environmental factors that may play a key role in affecting the gastrointestinal
tract, the immune system, the sensory nervous system, and the brain. There are
differences in each case that can be triggers for some but not for all.
Neuroscience: The Brain
Autism, like many diseases including epilepsy, was at first considered a
psychiatric challenge (in the mind) and is now viewed as a neurological
challenge (in the brain). Advances in technology have increased our knowledge
about brain structures. For example:
Neuroimaging can’t tell us everything, but it can tell us a lot, and the
capability of technology has improved drastically in the last decade. Since
1970, structural magnetic resonance imaging (MRI) has provided us with
views of the anatomical structures of the brain.
Introduced in 1991, functional MRI (fMRI) has demonstrated how the brain
functions in response to sensory stimuli. Over the past couple of decades,

neurological research using fMRI has produced 20,000 peer-reviewed
articles. In recent years, that pace has accelerated to eight or more articles a
day.
Since 2012, a new technology—high-definition fiber tracking (HDFT),
developed at the Learning Research and Development Center at the
University of Pittsburgh—now does for brain injury what X-rays do for
orthopedic injury. The focus of this new technology has so far has been on
brain injury: It makes diagnosis more precise as well as more persuasive.
Now, scientists are using this technology to research the autistic brain.
In The Autistic Brain, Temple Grandin and Richard Panek ask the question,
“What if some neuroanatomical finding or combination of them could serve
as a reliable diagnostic tool?” A diagnosis based not only on behaviors but
on biology as well would make a big difference in predicting deficits and
targeting treatments. Doctors could:
Apply early intervention even in early infancy when the brain is
most susceptible to being rewired
Target areas in the brain more locally, rehabilitating parts of the
brain they think they can help
Test new therapies and monitor existing therapies more closely
Tailor a prognosis to an individual child on a case-by-case scenario
Genetics: What Do Genes Have to Do with It?
So, what is the connection of the genes to autism and to the brain?
Like neuroimaging, the study of this science is in its infancy and scientists
are beginning to understand the connections.
In 1977, the first study of twins and autism was published and the gene
connection was still open to question then. The DNA at conception might
be identical at birth, but genes might work differently in each cell, or the
genotype might not be identical at birth due to spontaneous mutations
during the pregnancy. In 2007, a study published in Science concluded that
de novo CNVs (copy number variants) pose a more significant risk factor

for ASD than previously recognized. At first, scientists hoped to see
patterns. But the picture remains hazy.
But How Are Our Brains and Our Genes Connected, and What About
Environmental Impacts?
It is widely accepted that there are multiple environmental factors that can
trigger a genetic predisposition resulting in a condition or disease.
In 2011, the first investigation by Childhood Autism Risks from Genetics
and Environment (CHARGE), a research program of the MIND institute at
UCSD, was divided into three areas—nutrition, air pollution, and
pesticides. The results:
Combination of certain unfavorable genes and a mother’s lack of
vitamin supplementation in three months prior to conception and
during first month of pregnancy significantly increased the risk for
autism.
Children born to moms living less than two blocks from a freeway
were more likely to have autism, presumably due to exposure to
automotive exhaust.
Among the mothers of children with ASD or developmental delays,
more than 20 percent were obese; in typically developing kids, 14
percent were obese.
And What About a Possible Connection to Vaccines?
Some children have been known to get very sick and manifest severe
symptoms consistent with autism shortly after receiving their eighteen-
month vaccines. In many of these cases, the correct diagnosis could turn out
to be mitochondrial disease, a condition whose symptoms can be consistent
with autism.
It’s important to recognize that vaccines in and of themselves don’t cause
autism. However, as we are discovering with genetic research and
neurology, we don’t know which kids are susceptible to vaccines as an

environmental impact.
NEVER UNDERESTIMATE THE POWER OF PARENTS
NAA: Making a Difference on a National Level
BY WENDY FOURNIER
In 2003, a small group of parents came together to form the National Autism
Association (NAA). As I write this, we’re approaching our tenth anniversary of service
to families affected by autism.
Because NAA was founded—and has always been run—by parents, we know
firsthand the struggles that families face. The moment my daughter was diagnosed is
burned into my soul. I heard the doctor’s words, delivered without compassion or a
shred of hope, and cried the first of countless tears when he left the room. Grief and
fear consumed me. As a mom, I just wanted to kiss my daughter and make
everything all better, but I had no idea how to help her. I knew absolutely nothing
about autism and the thought of failing her terrified me. I had to dig deep to find the
strength that would carry us both through the uncertain journey ahead. I soon wiped
away the tears, connected with other parents, and started learning everything I could
to help my daughter.
Back then, we were all struggling to find information, resources, and treatment
for our own children and saw the need for an organization that could advocate on a
national level to make the journey a little easier for families like ours. NAA was
started from home computers and living rooms, focused on the most important issues
facing our community. We help families in many ways. Sometimes with information
and guidance or financial assistance. Sometimes by simply lending an understanding
ear to someone who feels alone and is having trouble coping.
We host our National Autism Conference each November, where families can
connect with one another and learn about the latest trends in treatment, therapies,
research, and advocacy. We’ve brought the issue of wandering and elopement to the
national forefront and created extensive resources to help keep our loved ones safe.
And we are always working on national advocacy efforts to help our children and
adults with autism have the best future possible.
We’ve also learned some very tough lessons along the way. We lost our founder
and dear friend Jo Pike to cancer at only forty-four years old. And I recently suffered
a heart attack and went into cardiac arrest—staring my biggest fear in the face: What
will happen to my daughter when I’m gone? So please remember as you embark on
this journey that you must also take care of yourself. A great friend once told me that
having a child with autism is a marathon, not a sprint. Truer words have never been
spoken. Listen to your body, eat well, get enough rest, and schedule some downtime
for yourself. Go have coffee with a friend, see a movie, read a good book—without
the word “autism” in it—crank up your favorite music and dance around the kitchen,
take a walk or a bubble bath. If only for a few minutes, rejuvenate and care for
yourself.
An autism diagnosis can take an emotional toll on the entire family. Our lives can

sometimes feel like a never-ending roller coaster. For many of us, it begins with
denial and shock, and turns to grief, fear, anger, guilt, and constant worry. But even in
the darkest of times, hope—or “hopeism,” as we call it—sustains us.
We experience pure joy in every milestone our children meet. We celebrate the
wonderful little moments that many other parents simply can’t appreciate in the same
way. I’ll never forget the first time my daughter grabbed a crayon and scribbled on the
wall, the first Christmas that she was interested in opening gifts, the first time she
blew out the candles on her birthday cake, or the first time she really hugged me
back. I’m smiling now, as I think of those moments that will come for you—and they
will!
Reach out to other parents and surround yourself with people who are positive
and supportive. Always trust your gut and follow your instincts—you know your child
better than any doctor, teacher, or therapist in the world. And remember, if a few
moms were able to start a national organization from their living rooms, you should
never, ever underestimate yourself. You are so much stronger than you might think.
Christopher Reeve once said, “Once you choose hope, anything’s possible.” Go grab
a crayon and write that on your own wall!
Wendy Fournier is a mom of three and president of the National Autism Association
(nationalautism.org). Her youngest daughter was diagnosed with autism in 2002.
Wendy is committed to changing the perspective of autism from what was once
considered a mysterious mental illness to a biologically definable and treatable
medical disorder. She attends and speaks at conferences throughout the United
States.
Vaccinations and Autism: Is There a Connection?
The possibility of a vaccination–autism connection is highly controversial, and
the debate is ongoing. On one side, there is a growing tendency to blame the
increased numbers of required or suggested vaccinations as well as the tendency
to give multiple vaccines in one shot for all the cases of regressive autism in the
past twenty years (regressive autism is autism that appears in a child at around
the age of eighteen months, after a normal development, causing the child to
regress). However, vaccinations in themselves do not cause autism, or millions
more children would be autistic. Neither does thimerosal, an organic compound
present in some vaccinations. But perhaps these are triggers for children who are
genetically predisposed to have autism and who have immune systems that are
not functioning properly.
On the other side are the government and the vaccine manufacturers stating
that vaccines are safe, and that those refusing to vaccinate their children are

putting the public’s health at risk.
NFAR: Making a Difference in Our Community
BY SHARON AND JUAN LEON
When our oldest son, Michael, was diagnosed with autism in 1996, we knew very
little about this disorder. At the time, we felt very alone. We never would have
imagined that our son would be just one of the hundreds of thousands of children to
be diagnosed with autism over the next decade.
Michael was diagnosed at a time when few treatment programs were available.
Applied behavior analysis (ABA) types of programs were emerging and were not yet
an approved treatment methodology for autism. As Michael’s parents, we had to
determine if we were going to create some sort of treatment program for him. After
some investigation, we hired, trained, and set up an ABA-based home behavioral
program. Luckily, it wasn’t long before these types of treatments became more widely
accepted and offered, and we were able to continue his program with funding
assistance.
Throughout our son’s development, we have learned how to advocate for
services to get his needs met. But we have also realized that we have been
fortunate. At the time, I was able to be a stay-at-home mother and could be there to
manage Michael’s treatments. We had the resources available to seek outside
medical assistance, to try promising new therapies, and to hire legal counsel when
needed.
As Michael grew, we watched the incidence rate for autism jump from 1 in 2,500
children to 1 in 110 children, and we kept wondering if anyone was paying attention
to these staggering statistics. But the truth is, these aren’t just statistics. They are
young children and their families, whose lives have been dramatically changed by the
effects of autism.
In December 2003, we founded the National Foundation for Autism Research
(NFAR) because, as parents, we wanted more answers and resources for families
and children in the autism community. We wanted to see effective treatments,
resources, and opportunities made available to all families—regardless of income
level. Our desire was to see a standardized practice of early detection and
intervention programs made available across communities when treatment is most
beneficial. And we wanted to see appropriate programs and supports made available
to teens and young adults that would allow them to reach their potential.
Through NFAR and our fund-raising efforts, such as our annual Race for Autism,
we are funding community-outreach efforts, pilot treatment projects, and educational
and transitional programs. NFAR is working to optimize the learning environment for
children with autism during school-time hours through our grant programs. And we
are providing funds for programs that work with the underserved communities in San
Diego. But there is still much to be done.
Today, our son is continuing to make progress, and he has plans for his future.

We want to give him those opportunities. And we want to help other families have
multiple possibilities for their children with autism as well. We know that children with
autism deserve a future, and by working together, we can make this possible.
Juan and Sharon Leon are cofounders of the National Foundation for Autism
Research (NFAR) (nfar.org), a 501(c)3 nonprofit organization dedicated to the
development of innovative treatment programs and options that improve the quality
of life for children with ASD.
It is difficult for the average person to form an educated opinion just from
reading the newspaper headlines. To be sure, there is valid concern about the
serious risk to public safety if children are not immunized. Until recently,
mumps and measles were practically nonexistent, and these diseases pose
serious threats to children. In the UK, the number of cases of measles has been
climbing.
To Learn More About Vaccines
Obviously, there is an urgent need for more research into vaccinations and a
possible connection with ASD. Meanwhile, parents need to educate themselves
by going to different sources and reading for themselves. As always, keep in
mind each organization’s or agency’s mission when reading any articles or
reports or analyzing research.
Any decisions regarding vaccinations should be discussed with your family
physician. There are sources of information parents can look at to find
alternative vaccination schedules, such as:
The National Vaccine Information Center (NVIC) (909shot.com), a
nonprofit educational organization founded in 1982, is the oldest and largest
parent-led group in the United States advocating reformation of the mass
vaccination system. NVIC is responsible for launching the vaccine safety
movement in America in the early 1980s.
SafeMinds (safeminds.org) is a nonprofit organization that works
aggressively with government agencies and legislators to facilitate the
removal of mercury from all medical products, as well as to create
awareness campaigns for families and physicians.

The Institute for Vaccine Safety (vaccinesafety.edu) was established in 1997
at the Johns Hopkins University School of Public Health (now the
Bloomberg School of Public Health). Its goal is to work toward preventing
disease using the safest vaccines possible. Visit this website for information
concerning vaccine schedules for infants and children, as well as the
amounts of thimerosal (if any) in the different vaccines.
The Vaccine Book: Making the Right Decision for Your Child (Sears
Parenting Library) by Robert W. Sears, MD, FAAP. Dr. Bob devotes each
chapter in the book to a different disease/vaccine and discussion of what the
disease is, how common or rare it is, and any possible side effects of the
vaccines.
What Your Doctor May Not Tell You About Children’s Vaccinations by
Stephanie Cave discusses the pros and cons of the different vaccines and
offers a risk-benefit analysis, as well as an alternative vaccination schedule
that may minimize exposure to any possible risks.
Why People with ASD Act the Way They Do
As mentioned in the previous chapter, a diagnosis of ASD is based on observable
behavioral characteristics. We are beginning to have an understanding of why
people have those observable characteristics, that is to say, why they behave the
way they do.
From observation and written accounts by people with ASD, we can
understand what some of the behaviors mean. This is helpful information for the
general public so they can develop an understanding of why people with ASD
might act a certain way, and understanding is a near neighbor of tolerance! It is
invaluable knowledge for parents, caregivers, teachers, and other professionals
who are trying to decide what therapies, treatments, and interventions could help
a person with ASD.
Behaviors Are a Form of Communication
For the very young, and those who are nonverbal, behaviors can be the only way
for them to communicate with us and the only way for us to understand what is

going on with them. Some of these behaviors are avoidance behaviors. Other
behaviors are indicative of the individuals trying to make sense of their
surroundings, or movement differences as explained earlier. Still others are due
to pain, anxiety, or panic attacks. The brain structure of many people with ASD
is unlike ours, with some processing circuits wired differently, and it is important
to realize that they cannot help what they are doing; they are not just “being
difficult.”
Parents, caregivers, and teachers can observe a person’s behaviors and try to
analyze the reason behind them. There is a certain amount of guesswork
involved, but by systematically picking one behavior and writing down your
observations, you will probably find a pattern.
For example, if a child keeps taking his clothes off, he is probably sensitive
to the feel of fabrics on the skin. It would be helpful to observe and take notes on
this particular behavior, such as whether he is doing it when he is wearing a
certain type of fabric or a certain fit or cut of clothing. Identifying what he can
wear will make it easier for him to be comfortable. Perhaps he can be
desensitized by various sensory integration techniques known to be helpful.
FOOD FOR THOUGHT
On Being Sensitive to Touch
From as far back as I can remember, I always hated to be hugged. I wanted to
experience the good feeling of being hugged, but it was just too overwhelming. . . .
Being touched triggered flight, it flipped my circuit breaker. I was overloaded and
would have to escape, often by jerking away suddenly.
—Temple Grandin, Thinking in Pictures
Still the best way to understand what certain behaviors may mean or how to
help is to read first-person accounts by those on the spectrum. There are books
written by some severely impacted nonverbal people, as well as many by those
who are more able. We can understand our children more by reading what they
have to say.

Striking a Balance Between Changing the Environment and Changing the
Behavior
As parents and caregivers, we need to find the balance between trying to change
the environment and changing the individual. Usually a bit of both will be in
order. For example, if behaviors indicate possible food allergies, and tests
indicate that that is so, a change in diet (the environment) is in order. However,
the person may need to learn to tolerate (slowly, through desensitization) eating
certain foods that perhaps he would not eat before if he is following a special
diet to help his condition.
If a person has auditory and visual sensory processing difficulties, perhaps
he can undergo auditory training or vision therapy and avoid spending too much
time in noisy, bright environments. Classrooms should not be lit with fluorescent
lighting, but the child also needs to learn an alternative appropriate behavior,
such as requesting a break or permission to go for a walk, rather than having a
temper tantrum.
Listed below are some behaviors and what they can mean. Keep in mind that
these are generalizations and that everyone is different, so they may not be true
for everyone. Nonetheless, this is a good place to start trying to analyze a
person’s behaviors. Then, when looking at treatments and therapies, you will
already have an idea of areas in which you can help this person. Remember, too,
that some behaviors can be indicative of different causes, so you need to look at
the total person.
Some Observable Characteristics and What They Could Mean
Finicky Eating
Eating only from certain food groups can be indicative of food allergies.
Sometimes the discomfort created by food allergies can cause other
behavioral symptoms similar to sensory processing issues. Often, frequent
diarrhea or constipation accompanies eating problems due to allergies.
Eating only foods of the same texture, smelling the food before eating it,
and not eating foods that produce a crunching sound can indicate sensory
processing issues, as can chewing or eating unusual nonfood items.
Eating only exactly the same foods, if accompanied by other examples of

insistence on sameness, can show high sensory sensitivities or apprehension
of the unknown.
Avoidance of Auditory Stimulation
Covering the ears or appearing deaf (e.g., not responding when name is
called) indicates auditory processing difficulties and a high sensitivity to
sound. A person may cover his ears to try and block out the sound, or tune
out completely.
Leaving a room when people enter may be a way of avoiding too much
auditory stimulation.
Listening to and repeating TV commercials or songs could indicate that the
person has gotten used to hearing those sounds, i.e., has desensitized
himself to them. Listening to people talk is more difficult because people
don’t usually say the same thing twice, and no two people speak the same
way.
People with autism often speak in a monotone or have peculiar intonations
because they don’t understand the concept of nuance, and that how you say
something conveys an additional meaning to what you say.
No Reaction, or Else a Strong Reaction, to Touch
Some babies become stiff when you pick them up; some children will fall
and cut themselves and not cry. Usually this indicates that their tactile sense
is out of whack. Perhaps a child’s tactile sensors are overly sensitive and he
does not like to be touched, or they are very dull and he doesn’t feel
sensations the way most people do.
Removes Clothes or Shoes Often
A person may not like the feel of particular textures on their skin. Certain
fabrics and shoes can make people with extremely sensitive tactile sensors
uncomfortable.

Lack of Eye Contact
People with visual processing problems find it hard to look at people
straight on; usually they look from the side of their eyes. Many on the
spectrum have expressed that they can use only one sensory channel at a
time. For example, they can either visually process or auditorily process,
but not both at the same time. So, if they want to process what the person is
saying, they can’t look them in the eye.
Unusual Body Movements
Rocking in a chair, or back and forth from one foot to the other, could be a
stress release from too much stimulation, or not enough.
Flicking of fingers could also be a release from stress, but if doing it in
front of the eyes, it could be a visual processing stimulation.
Awkward movements and running into furniture can be a symptom of poor
body mapping, not knowing where one is in space, or poor fine and gross
motor skills.
Difficulties with initiating movement, stopping movement, or following
through with requests could be due to movement differences.
Does Not Play with or Imitate Others
People with autism are often lacking in the social skills and interests, which
the rest of us find so important. Also a child with sensory processing issues
will have difficulty being near other children who are, in his eyes, noisy and
unpredictable, and who have textures and smells associated with them that
the child with ASD cannot tolerate.
Lines up Objects
This can show a need for sameness. Usually children who line up toys are
also the ones who do not like change in their routine, may have repetitive
speech, and do not like to see the furniture moved into a different pattern in

their home.
They may have a hard time making sense of their world, and so the
sameness in certain areas provides a predictability and security missing
from an existence that they are having a hard time comprehending.
Temper Tantrums, Hyperactivity, and Aggression Toward Self or Others
Keep in mind that all behavior is a form of communication. Trying to
understand what the person is communicating is important. Temper
tantrums or meltdowns in children can be a reaction to sensory overload, or
to a change in the sameness that provides security.
Places with a lot of light and noise, such as supermarkets and waiting rooms
with fluorescent lighting, are really hard on people with sensory processing
issues.
Aggression toward others could be for any number of reasons, such as
sensory overload (e.g., a sudden loud noise near someone’s ear could cause
them to jump up and strike out at the person making the noise, as it can be
very painful), anxiety, or PTSD due to a past act of aggression toward the
person on the spectrum.
Self-aggression could be due to seeking sensory stimulation, feeling pain,
anxiety, or frustration.
Sudden changes in behavior can indicate possible mental or physical abuse
toward the person on the spectrum.

4
Newly Diagnosed Adults and Parents of Children with
ASD
After the Diagnosis
The book was finished and now I had a word for the problems I had fought to
overcome and understand. The label would have been useless except that it
helped me to forgive myself and my family for the way I was. . . . I wanted to
meet the other autistic people I’d been told about and was surprised to find out
that they were few and far between, scattered across the country and across the
world. I was even in a smaller category. I had become “high functioning.”
Nevertheless, I needed to meet others.
—DONNA WILLIAMS, Nobody Nowhere
When you are a parent of a child who is developing more slowly than typical
children, you may feel alone, but you are not. Knowing that you are not alone is
a big part of the cure for the worry and pain. Parents whose children are not
developing typically can greatly benefit from understanding the similarities
between themselves and others. A lot of healing occurs when you exchange
stories with others in similar circumstances.
—ROBERT A. NASEEF, Special Children, Challenged Parents
IT was hard for me to go to my first autism support group meeting when Jeremy
was little. I was taking another step toward acknowledging that my child had a
disability and that it wasn’t just going to go away. It felt as if I was becoming a
member of a club that I didn’t really want to join. The only thing I had in
common with the roomful of people was the label our children shared, but even
so our children were so different from each other. But we helped one another. We

shared resources, information, anger, tears, and advice. We gave each other
energy and the courage to do what was needed. We shared stories about our
children that were too embarrassing to tell anyone else, and we laughed at the
absurdity of our situation. And most important, the group developed resources
that were previously nonexistent. We created change in the status quo.
You Are Not Alone
Because of the epidemic rise in the numbers of individuals diagnosed with ASD,
you are not alone. Whether you are a parent or you are an adult with autism,
having access to others like yourselves is necessary, not only for the sharing of
information but also for your mental health.
There Is Power and Comfort in Numbers
In this chapter, suggestions and resources will be provided for the parents of
children with ASD and for the recently diagnosed individual. Professionals can
also learn much by accessing the same sources. It is true that you are not alone:
There are many organizations, associations, books, and websites ready to help
you. Remember, too, that there is comfort to be had in meeting others
experiencing the same situation as you. There is also power in numbers: the
more people who get together, the more useful ideas float around. A word of
warning: There are so many sources of information on the Internet to draw from
that parents need to use caution and learn how to discern factual information
from marketing hype. Autism has now, unfortunately, become a money-making
business for many.
Adults who have a diagnosis of ASD may find support through online or
local chapters of various nonprofits dedicated and run by adults on the autism
spectrum, as well as parent-and professional-run organizations that have an
advisory board of adults on the spectrum. Some of these are listed below, others
are listed in the Resources section at the end of this book.
Professionals who are new to the field of ASD would do well to read about
the experiences of parents and to consult the resources available to parents in
order to learn more about this disorder, as well as how it affects the family.
Parents and professionals alike would benefit and gain a greater

understanding of autism and Asperger’s by reading and viewing accounts by
people with ASD, in books, on the Internet, and on TV.
Empower Thyself: Seek Knowledge
The first step in gaining an understanding about ASD is to gather knowledge.
Here are some places to start:
Make contact with nonprofit organizations dedicated to ASD. The first
step should be to make contact with other people in the same situation, that is,
others who have ASD or other parents. The first place to start is your local
support groups. Some are chapters run by national organizations and can be
found on their websites. These are:
Autism Society of America (ASA): autism-society.org
Autism Speaks: autismspeaks.org
Talk About Curing Autism (TACA): tacanow.org
National Autism Association (NAA): nationalautismassociation.org
Those specific to adults on the spectrum include:
The Global and Regional Asperger Syndrome Partnership (GRASP):
grasp.org
Autism Women’s Network: autismwomensnetwork.org
Autistic Self-Advocacy Network (ASAN): autisticadvocacy.org
FOOD FOR THOUGHT
Tips to Keep in Mind on Your Quest for Knowledge
Make sure you are seeking information from reliable sources. Just because
something is published on a website or in a magazine does not mean it is
accurate. Stay away from websites that do not clearly state where the

information listed comes from, who or what organization has created the
website, and their connection to whatever products or treatment they are trying
to sell you.
Take it one step at a time and seek only what you are ready to assimilate.
Focus on the present. Learn what you can that will help you today or over the
next six months. At this early stage, if you try to think too far ahead, you may
feel overwhelmed. Do only what you feel capable of doing, and read only what
you are ready to digest.
Learn the jargon. If someone uses a word you don’t understand, look it up or
ask for an explanation.
Ask questions if you don’t understand. Ignorance is not bliss, and life will
become a lot easier if you get used to asking questions. Before going to any
meetings or appointments, write questions down. Ask and ye shall receive.
Stay away from treatments that are touted as being equally effective for
everyone with autism. There is no such thing. What works for one child may
not necessarily work for yours. Everyone is different; you need to find what is
right for your child.
Do not be intimidated by others. Some parents feel overawed by medical or
educational professionals. There is no need to feel this way. They may be an
expert in their field, but you are the expert on your child. ASD is very complex,
and even educational and medical experts do not know everything. Together
you can be a team.
There may also be local support groups in your area not affiliated with
national organizations. These and local chapters of the national organizations
will be able to give you more localized information. Because each state has
different ways of providing federally mandated early intervention and education,
you will need to know how to access these services in your state. Also, local
chapters often have guest speakers, and meeting other members can be a great
way to get helpful information on local resources.
Local chapters may have a lending library of books you can borrow. This is
a good way of filtering through the different books and only buying the ones you
really will use over and over.
Make contact with other families or adults diagnosed with ASD.
Through your local association or websites, make contact with others in your
situation. If you are an adult who has just been diagnosed, you might find it
helpful to contact another adult who has ASD. This can be done on the telephone

or online. Parents will find it helpful to talk to others who have been in the same
situation or are going through it now.
Read reputable papers and books. Some suggestions are:
“Advice for Parents of Young Autistic Children” (2012, Revised) is on the
Autism Research Institute website at
autism.com/index.php/understanding_advice. There is other good
information on this website regarding autism in general.
For a quick overview, read my book What Is Autism?: Understanding Life
with Autism or Asperger. This is an easy read to share with your
relatives and close friends so they can understand what you are going
through.
The Autism Revolution: Whole Body Strategies for Making Life All It Can Be
by Martha Herbert, MD, PhD, with Karen Weintraub.
Autism Solutions: How to Create a Healthy and Meaningful Life for Your
Child—Innovative Strategies for Developing the Right Treatment Plan
by Ricki G. Robinson, MD, MPH.
An Early Start for Your Child with Autism Using Everyday Activities to Help
Kids Connect, Communicate, and Learn by Sally J. Rogers, Geraldine
Dawson, and Laurie A. Vismara.
Read accounts written by adults with autism spectrum disorder. For
everyone, reading books and blog posts by people with ASD gives an insight
into what was helpful to them and explains some of their feelings and behaviors.
For newly diagnosed adults, this may help you to understand that there are others
out there with similar challenges, and perhaps their stories will hold tips to
helping you live in a neurotypical world. See the Resources section for some
recommendations.
Read accounts written by parents of children with ASD. There are many
blogs and books written by parents of children on the spectrum. These can be
very informative. Keep in mind that they have their own viewpoint and
perspective depending on what their experience has been and what type of child
they have.
Learn about any services or funding for which you or your child may be

eligible. If you are not already, you and your child will soon be consumers of the
various wonderful systems that are there to help you. This gives you certain
rights as well as responsibilities (see “Where to Start Your Search for Services
and Funding” on page 86). Your local parent support groups can provide you
with the information you need to get started in your area. Educate yourself by
talking to other parents who have been there before. Start the application process
for anything you feel you are eligible for. Things take time.
Find out about any insurance coverage you may have. Many states now
require insurance companies to provide coverage for autism-related therapies
and treatments. Autism Speaks has the latest updates on their website at
autismspeaks.org/advocacy/insurance/faqs-state-autism -insurance-reform-laws.
Get on waiting lists. If your child is very young, you need to find out about
early intervention in your area. For any age, it is important that you get your
name on any lists for services you feel you may need to access at some point.
Who knows what the future holds? You may need to get on lists for speech
evaluations, respite care, an assessment of special education needs, or other
services. If you are investigating applied behavior analysis (ABA), it’s best to
call a few providers and get on their lists. You may not want or need it in the
end, but remember, it is easier to get off a list than to get a service when you
haven’t been on one in the first place.
Start keeping good records. Start keeping a record of all medical visits and
professional appointments. Keep track of telephone conversations as well. Filing
papers in a three-ring binder in chronological order is the best way to organize
information. Do not separate papers by profession (e.g., speech assessment,
psychological assessment), as a chronological order of all papers makes it easier
to see a complete picture of the child at different ages.
Start keeping notes on your child. Make a journal about your child and
start collecting data and making notes about developmental milestones, illnesses,
bowel movement patterns, as well as health changes (if any) following vaccines,
medications, and vitamins. Information recorded here about dietary habits;
behaviors, including self-stimulatory ones; and the child’s abilities and
challenges can be useful in getting a full picture of your child and can help in
identifying the best ways to help him.
Take videos of your child. Our memories may fade, but videos don’t lie.
This is a good way of seeing how a child develops and progresses. Also, if ever
you need to prove a point on how a particular method is working, a video can
illustrate that and make a strong visual impression about the difference in your

child.
Do whatever you can to interact with and teach your child. You may be
waiting on lists for some time. Do what you can to connect with your child: read
to him, sing to him, play with him. Don’t wait for someone else to do it.
Connecting with this child may not be the same as connecting with his siblings
(if any), but you will connect.
Take care of yourself. Most important, stay healthy. Remember that you
still have a life outside this child. Take time for yourself and for your partner as
well as any other children. There is a whole world out there, and you need to
recharge your batteries to keep things in perspective.
Seek out positive people. Stay away from negative people who sap your
energy. Later in this chapter, we will discuss the grief cycle and how it affects
people. Sometimes, in support groups you will meet individuals who are
constantly depressed or you may have relatives who are handling the diagnosis
worse than you are. Everyone is entitled to a bad day here and there where they
feel as if they have hit rock bottom. However, the whole point of having a good
cry is to get it out of your system, and then get on with your day. You need to
save your energy to help your child, your own family, and yourself; don’t let
others drain it from you.
Who Said What? Buyer Beware
You will meet people at support groups, visit many websites, read books, get
advice from professionals. All these sources of information are helpful, but you
must be able to sift through the information and analyze what is valid for you:
Information from other parents: Parents will say that a particular treatment
worked or didn’t work for their child. They may say a certain therapy is the
best thing on the market. Remember, they are talking from their point of
view, based on their child. Your child may share a common diagnosis or
label, but that does not mean the children have the same treatment needs.
Keep in mind that just as people have certain political or religious beliefs,
they also have particular beliefs when it comes to autism and treatment.
Information from websites: As mentioned before, while many websites are
valid, informative, and based on fact, others simply put out information

based on the particular bias of the individual or company that has set them
up. You need to read everything with a grain of salt and learn to develop
analytical skills if you don’t have them already.
Information from books: Books are generally good sources of information,
though again you need to bear in mind who is writing the book and what
perspective they are writing from. Also, look at when the book was
published. If you are preparing for a meeting with your school district and
have questions about your rights and responsibilities, you want to make
sure you are consulting a recent publication that takes into account any
recent changes in the law, and not something written ten years ago.
Information from professionals: Professionals are very knowledgeable
people and can be experts in their field, but that does not mean that they are
knowledgeable about the latest treatments and therapies for ASD. Neither
are they experts on your child; you are. Again, you need to know more
about a professional’s experience and training, and what biases they have.
On the other hand, keep in mind that autism has now become big business,
and unfortunately, there are some unscrupulous individuals who will try to
sell all parents expensive tests and treatments for every child. Some
children may benefit, but not all. It does not mean that what professionals
have to say is not valid, just that, like all humans, they are shaped by their
experiences. Perhaps they have not yet worked hands-on with a child of
your age or functioning level. If they have, did the children they worked
with progress, and to what extent? Did progress stabilize or regress when
treatment was ended?
Information from autism organizations: ASD organizations are wonderful
sources of information. Just be aware that they have opinions, just as people
do. Sometimes there can be the appearance of a conflict of interest.
Unfortunately, autism is not free of politics. But remember that all
organizations are doing their best to help people with ASD; you just have to
be able to gather information and make your own decisions about what is
best for your child and your family.
FOOD FOR THOUGHT

Loss of Expectation
What it comes down to is that you expected something that was tremendously
important to you, and you looked forward to it with great joy and excitement, and
maybe for a while you thought you actually had it—and then, perhaps gradually,
perhaps abruptly, you had to recognize that the thing you looked forward to hasn’t
happened. It isn’t going to happen. No matter how many other, normal children you
have, nothing will change the fact that this time, the child you waited and hoped and
planned and dreamed for didn’t arrive.
—Jim Sinclair, “Don’t Mourn for Us”
For Parents: Handling Your Own Emotions
Life is a series of choices. Granted, as a parent you did not choose for your child
to have an autism spectrum disorder. However, you can choose how to react to it
and what you are going to do about it. The first place to start is to learn about the
emotions you are feeling, and to understand that they are real and unavoidable,
and that all parents will go through them at some time or another. These
emotions need to be addressed. A good place to start is to acknowledge them and
accept that it is normal to have them.
The Moment Your Life Changes Forever
There are certain events that change the course of world history; dramatic events
that are indelibly etched in all our memories. And along with the memory of the
actual event, there is the memory of where you were or what you were doing
when you got the news. The Boston Marathon bombing, the Sandy Hook
Elementary School shooting, September 11, the Challenger exploding on
takeoff, the day that John F. Kennedy was assassinated are all events that we as
members of the human race shared collectively.
After disastrous events, all of society grieves together; and though we are all
different, we can mourn together and acknowledge the feelings the event has
provoked. The day a parent learns that his or her child has a disability is like one
of those dramatic event days. For some, it feels as if they have just been hit in
the stomach and had the wind knocked out of them. Even if the parent suspected
that there was something wrong with the child, they can’t believe this is

happening. For every parent of a child with a disability, this moment is forever
etched on their mind.
FOOD FOR THOUGHT
You Never Get Over It, You Just Learn to Deal with It
It was one of those beautiful Parisian spring days that makes you feel that all is right
with the world. I decided to stop at the café after a walk with my four-year-old son.
At the next table, a mother and her ten-year-old boy were laughing at a joke he
had just told her. She asked him about his school day and he talked about the games
he played at recess. When the waiter came to take their order, the boy grinned
impishly at his mother and asked imploringly, “Maman, can I please have a pain au
chocolat and a hot chocolate?” “It’s going to ruin your appetite for dinner, but go
ahead,” she replied, ruffling his hair.
When the waiter came to take our order, I asked my son if he wanted a hot
chocolate, as he stared at the speckles of dust in the air reflected by the light, his
head cocked to one side, while spinning the spoon he had found on the table. He
appeared not to hear me; it was as if I had not even spoken. I looked with envy at the
other table, at that mother sharing an everyday ordinary moment with her child. And
that now-all-too-familiar ache descended as I realized once again that I would never
have a moment like that with my son; I would never sit and share a joke and have a
conversation with him. I wondered if he would even ever look at me with the same
interest he showed the spoon.
I reached for the spoon and started fidgeting with it. My son looked at the
movement of the spoon. I picked it up and twirled it in front of my face. For an instant
he looked into my eyes and smiled before fixating back on the spoon, melting my
heart in the process. Perhaps, I thought, I will never be able to have a conversation
with him about recess, but I know we will connect somehow; we will find a way, our
way.
The difference is that no one else is sharing your pain. When the parent
leaves wherever it is that he got the news and walks into the street or parking lot,
his whole world has changed, but there is no comfort to be had, no collective
reaching out to one another. The other people in the street or in the other cars
have the same life they had an hour earlier. Only the parent’s has changed
forever.
The Grief Cycle

In her book On Death and Dying, psychiatrist Elisabeth Kübler-Ross introduced
her famous “stages of dying” or “stages of grief” model, in which she lists the
five stages a dying person goes through when they are told about their terminal
illness: denial and isolation, anger, depression, bargaining, and finally
acceptance.
The emotions that a parent goes through when raising a child with a chronic
health need or disability, including ASD, have been likened to Kübler-Ross’s
five stages of grief. The difference is that instead of going through each stage
chronologically, parents are on a continual cycle, going through different stages
at different times. They never graduate completely out of the grief cycle but do
eventually learn to spend more time in the acceptance phase.
Why Do Parents Go Through the Grief Cycle?
First of all, parents are mourning the death of the child they never had, the death
of the future they had envisioned sharing with their child. They have not actually
lost their child, but they have lost their fantasy child, the one they had hoped for
and dreamed about. As Jim Sinclair so rightly puts it in his article “Don’t Mourn
for Us,” “Much of the grieving parents do is over the non-occurrence of the
expected relationship with an expected normal child. This grief is very real, and
it needs to be expected and worked through so people can get on with their lives
—but it has nothing to do with autism. . . . It isn’t about autism, it’s about
shattered expectations.”
Second, parents go through this grief process because until recently autism
was considered incurable, and parents were told to go home and accept that there
was no hope for their child and to plan on institutionalizing their child in the
future when life with autism got to be too much. The medical professionals had
nothing to offer but condolences.
Third, parents who have children with regressive autism (a child who
developed normally and then started regressing at around eighteen months) may
feel the very real loss of the child they did have, of seeing their child slip away
into autism.
However, a diagnosis of autism is not a diagnosis of despair and
hopelessness. There is a chance of dramatic improvements for some. And for the
rest, there is much that can be done to help them reach their potential. There are
so many new treatments, therapies, and educational strategies out there.

Dedicated parents and professionals have fought hard (and are still fighting) to
get research funded, discoveries made, services provided, laws enacted, and
information shared so that all individuals with ASD can have a future. The grief
cycle is still here, but the future looks brighter for all of us.
The Positive Aspects of the Grief Cycle
An important part of this grieving process is to realize that to grieve is normal
and necessary. It is important for the well-being of the family that the parents
recognize and acknowledge this grief as well as the emotions that will
continually resurface. Each emotion on the grief cycle, if recognized, can be fuel
for positive action. If you are at the anger stage, for example, you might use that
anger to refuse to accept a third-rate educational program for your child and to
request an appropriate placement. Parents need to learn to recognize where they
are on the cycle, and how to use that emotion to gain knowledge and empower
themselves. Then, on the days that they feel strong and capable, they will be
ready for action.
Remember, when it comes to ASD, early intervention is the best
intervention. The sooner you can use these emotions to help yourself, your child,
and your family, the better off you all will be.
The Different Stages of the ASD Grief Cycle
Shock and disbelief. The first reaction a parent usually has when hearing the
diagnosis, even if they suspected something was wrong, is disbelief. “There must
be some mistake.” “This can’t be happening.” At this point, the parent usually
does not process exactly what has happened or the enormity of what has just
been said. They often go into automatic-pilot mode and sit through the rest of the
meeting without really taking in any more information. Some parents may even
feel physical pain, as if someone has torn them open. They may feel as if they
have been smothered in a dark heavy blanket and are unable to see or hear or
breathe.
Tip for parents: Leave the meeting and allow yourself time to react to what
you have heard. React however you want to react. Don’t do anything or make
any decisions until your body stops reacting. Make an appointment to come back
another time, when you have had a few days to process the initial shock. Make a

list of questions to ask. You may find it helpful to talk to close family and
friends; you may wish to isolate yourself. Take time for yourself.
Denial. At this stage, parents think there is some mistake which will
eventually be cleared up. Even though they may see the obvious and it has been
confirmed by a professional, they still think, “There is nothing wrong with my
child. They must have mixed up the test results.” In denial, parents often seek
second or third opinions, or some magical treatment that will “cure” their child.
Tip for parents: Use your denial positively. Gather information and learn
more about autism. Some parents start “shopping” for services, looking for that
one treatment that will cure their child. You know there really is not a magic pill
out there, but denial can fuel you to get informed and learn all you can.
Anger or rage. Once a parent has gotten through the denial stage after the
initial diagnosis, they will often be angry. “Why me?” “How come there are
people out there with perfectly healthy children they don’t appear to care about,
and our poor child, who is the light of our life, has the disability?” Often, the
professional who gave them the initial diagnosis bears the brunt of their rage.
The parents may feel anger toward their spouse, toward God (if they believe in
one), toward the child, or maybe even toward the child’s sibling for being
healthy and normal (which leads to feelings of guilt . . .). They will feel anger at
the disability. At sensitive times, such as when seeking educational provision,
this anger may flare up and be misdirected at representatives of the local
educational authority.
FOOD FOR THOUGHT
Shame and Embarrassment
When my son was fifteen, he still found it difficult to be in certain environments at
times and would start flapping one of his hands or rocking on the spot. I was so used
to being stared at that I forgot that people were looking at me because of my son’s
behavior, and I would think, “Is there food on my face?” “Are my buttons undone?”
My son was usually good at that age about keeping his hands to himself, but
every once in a while he would get attracted to a pattern or a color or a shiny object
and would touch someone’s bag or sweater while we were waiting in line at the
supermarket. Obviously we worked hard at teaching him that this was inappropriate,
but sometimes he saw something that was just too tempting. Of course I would
immediately stop him, remind him of what we had said about doing that and
apologize to the person in question. I often got them laughing by saying something
like, “He knows quality when he sees it, he only goes for the top designers.” Humor
helped to put us all at ease.

Tip for parents: Feel angry! You have a right to be. But don’t misdirect your
anger at the people who are trying to help you. Anger carries a lot of energy with
it that can be focused to enable you to be an advocate for your child. Learn to
refocus your anger and do something positive with it: perhaps write those letters
asking for services or more assessments—just wait a few days and reread them
once you have calmed down, then tone down the inappropriate parts before
sending them off.
Confusion and powerlessness. You are now entering a world you know
nothing about, hearing new words that sound foreign. You are confused: “What
does this really mean about my child?” “I don’t understand what the doctor is
talking about.” And this confusion leaves you feeling powerless. Powerlessness
results from feeling that now you have to rely on the advice and expertise of
others, people you don’t even know that well and have no reason to trust: “The
specialist says this is the best method.”
Tip for parents: Of course you are confused and feel powerless; you have
entered a territory you know nothing about. There is a solution: start learning the
terminology and the subject, and little by little you will become knowledgeable.
And knowledge is power. You will feel less and less confused and more in
control once you have the knowledge to make informed decisions. It will take
time, but you will get there.
Depression. Sometimes everything seems like a struggle. The struggles to
try to cure or change the ASD lead to feelings of despair. The idea that this is not
the life the parent had dreamed of, that this is not the family they had hoped for
is more than can be borne. They realize that autism is 24/7, and that they are on a
train they never wanted to board and there is no getting off. The lack of sleep
does not help, either.
Tip for parents: This is when you need to take some time away from autism,
even if it is only a few hours. Have a good cry and then pamper yourself. Call a
friend and do something you really enjoy: meet for lunch, play some golf, go
shopping. If talking to friends, family, or other parents is not helping you get out
of your depression, contact a counseling service or ask your doctor to
recommend a therapist, perhaps even a bereavement counselor.
Guilt. Parents feel guilt about having a child with ASD. After the diagnosis,
the guilt is typically expressed as, “What did I do to cause this to happen?” “Was
it the glass of red wine I had at my birthday party when I was pregnant?” “I

shouldn’t have allowed the doctors to give him those vaccinations.” “Am I being
punished for something I have done?” Later on, when they revisit the guilt stage
on the cycle, it revolves around, “I’m not doing enough for my child.” “I should
have taken a second mortgage on the house so he could have more therapy and
alternative treatments.”
Tip for parents: Don’t beat yourself up. All parents do what they think is
best at the time. It is not a good idea to use hindsight to try to analyze and
critique the past. Nobody’s perfect. Take the time to sit back and think about all
the positive things you have done for your child, and how your child is growing
and developing under your care. Pat yourself on the back for what you have
done, and think about where you can go from here. The past is the past; focus on
the present.
Shame or embarrassment. At some point parents will feel shame about not
having a perfect child—“What will people think?” Later, as the child gets older,
they are nervous about people’s reactions to the child’s behavior in public. They
catch someone staring at their child. They think, “Gosh, I wish he wouldn’t flap
his hand while he is walking.” “His lack of eating skills and his disruptive
behavior is ruining everyone else’s dinner at this restaurant.” “People must think
I’m a terrible parent when he acts this way.” And then, of course, they feel guilty
about feeling shame, which puts them on another part of the cycle.
Tip for parents: Get over it. Do not worry about what others are thinking. In
the big picture, it doesn’t matter. Think of it this way: Your child is different and
interesting and your life with him will not be boring. Develop a sense of humor.
Stand straight and tall, look confident. Just think about making this a positive
experience for your child, not about the others. When people see that you are at
ease with your child in public, or see that you are trying to cope with a
challenging behavior, they will respect you.
Fear and panic. Parents will inevitably feel fear and panic: “What will
happen to my child?” Times of transition can bring about these panic attacks.
“How will he adjust to the new school?” “Another new teacher! Is she going to
understand his learning style?” “What will he do after high school?” and of
course the biggest panic attack comes from the dreaded, “What will happen to
him and who will look out for him when we are dead and buried?” or “I want
him to live with us at home but we can’t handle it anymore. Is there a good safe
place for my child?”
Tip for parents: Take some time for yourself, take a few deep breaths, or
practice your favorite relaxation technique and then acknowledge that what you

are feeling is fear of the unknown. Use the fear and panic to propel you toward
gathering knowledge about the choices you have in regard to whatever issue you
are feeling fear about. Write down everything you think the new teacher should
know about your child and give her the letter with a smile, telling her you hope it
is helpful information. Find out about his options after high school. Visit group
homes or residential schools to see what they are really like. Just having the
knowledge about the options will make you feel better. If you are not happy with
the options, perhaps you will find yourself at the anger stage and that will propel
you to organize with other parents and advocate for better choices or, better yet,
create them.
Bargaining. After a while parents start to bargain with whatever higher
intelligence or God they believe in. “If the forty hours of behavioral therapy per
week for two years cures my son, I will adopt a poor family to send money to
every week for the rest of my life.” “If it is only autism, I can accept it, but if it’s
mental retardation as well . . .” “If he can learn to communicate in some
way . . .” The process of bargaining is a way for the parent to accept a part of the
problem without taking on the whole problem.
Tip for parents: As time goes on, you will find that you are bargaining less
and less as you start to have more acceptance of your situation and get to know
your child, his personality and potential, as well as the options out there.
FOOD FOR THOUGHT
Don’t Mourn for Us
This is an excerpt from an article published in 1993 in the Autism Network
International newsletter, Our Voice (vol. 1, no. 3). It is an outline of the presentation
Jim Sinclair gave at the 1993 International Conference on Autism in Toronto, and is
addressed primarily to parents. Jim is autistic.
Autism is not death. Granted, autism isn’t what most parents expect or look forward
to when they anticipate the arrival of a child. What they expect is a child who will be
like them, who will share their world and relate to them without requiring intensive on-
the-job training in alien contact. Even if their child has some disability other than
autism, parents expect to be able to relate to that child on the terms that seem
normal to them; and in most cases, even allowing for the limitations of various
disabilities, it is possible to form the kind of bond the parents had been looking
forward to.
But not when the child is autistic. Much of the grieving parents do is over the
non-occurrence of the expected relationship with an expected normal child. This grief

is very real, and it needs to be expected and worked through so people can get on
with their lives—but it has nothing to do with autism. . . . It isn’t about autism, it’s
about shattered expectations.
I suggest that the best place to address these issues is not in organizations
devoted to autism, but in parental bereavement counseling and support groups. In
those settings parents learn to come to terms with their loss—not to forget about it,
but to let it be in the past, where the grief doesn’t hit them in the face every waking
moment of their lives. They learn to accept that their child is gone, forever, and won’t
be coming back. Most importantly, they learn not to take out their grief for the lost
child on their surviving children. This is of critical importance when one of those
surviving children arrived at the time the child being mourned for died. . . .
That isn’t the fault of the autistic child who does exist, and it shouldn’t be our
burden. We need and deserve families who can see us and value us for ourselves,
not families whose vision of us is obscured by the ghosts of children who never lived.
Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive.
We are real. And we’re here waiting for you. . . .
Hope. Parents have moments when they feel hopeful. “We may make it
through this.” “This diet/therapy/medication seems to be helping our child.” “He
is getting this concept.” “He’s keeping his behaviors under control.” Just like any
parents, there are times when we are encouraged by the accomplishments of our
child or we meet professionals or treatments that are having a positive impact on
him.
Tip for parents: Celebrate and cherish each and every one of these moments.
Tuck them away and pull them out on the days when you feel bleak and could
use some hope. These are the moments that make you feel that life is good.
Treasure them, and share them with those who have shared your sorrows so they
can also share in your joy.
Isolation. Sometimes parents feel isolated—“My child is the only one who
is not acting appropriately.” Or they seek isolation because they do not want to
see the reminders that they have a different child or a different life from
everyone else’s, or because they feel that they must protect their child.
Tip for parents: Sometimes you feel an overwhelming need to isolate
yourself from others because the pain of seeing other parents interacting
normally with neurotypical kids is too great. It is not a good idea to stay isolated,
however. To get through this, use local associations to find other families who
have children with ASD or other disabilities. You will feel more comfortable
with them, as you will understand each other’s concerns. Eventually, over time,
you will come to feel more comfortable spending time with other families who

are not in the same situation as you.
Acceptance. Parents will feel acceptance of their child’s ASD only after
having experienced and worked through some of the other emotions discussed
above. Acceptance means that they are feeling some control over the situation
and their feelings about it. The challenges may not be solved to the level that
they wish, but they see that they are able to cope and live with the hand they
have been dealt. Acceptance also means that they realize that there will be days
filled with anger or grief, and days that they will have strength. On any given
day they will be in one spot on the grief cycle or another, but it’s okay. The
parent is learning to cope and knows it’s all right to have those emotions. Also,
accomplishments that may seem ordinary and small to others will be moments
they savor and cherish. Acceptance also means that they look at their child and
see a person, not a disability.
FOOD FOR THOUGHT
Rethinking Normal
Liane Holliday Willey recognized that she had Asperger’s syndrome at the time her
daughter was diagnosed. In her book Pretending to Be Normal, this is what she has
to say about realizing she had Asperger’s as well.
Yet, no matter the hardships, I do not wish for a cure for Asperger’s syndrome. What I
wish for is a cure for the common ill that pervades too many lives; the ill that makes
people compare themselves to a normal that is measured in terms of perfect and
absolute standards, most of which are impossible for anyone to reach. I think it would
be far more productive and so much more satisfying to live according to a new set of
ideals that are anchored in far more subjective criteria, the fluid and the affective
domains of life, the stuff of wonder . . . curiosity . . . creativity . . . invention . . .
originality. Perhaps then, we will all find peace and joy in one another.
For Adults with ASD: Getting Diagnosed Later in Life
In the past, many individuals with ASD on the very able end, or with Asperger’s
syndrome, who were able to function pretty well, did not get diagnosed at all or
not until later in life. However, many felt that they were in some way different
and, once diagnosed, reported feeling relieved at knowing that there were others

out there like them and that there was a reason why they never fitted in.
Knowing that there is a name or label for what you have gives you the
option of looking up information and seeing what strategies are out there to help
with some of the challenges you may face. Being diagnosed allows you access to
support groups and information you did not know existed.
You may wish to read books by people with ASD who give suggestions on
how they cope with some of the challenges they face, or look up information on
the Internet. Some of the books listed in the Resources section were written by
people who were diagnosed with ASD later in life. The Complete Guide to
Asperger’s Syndrome by Tony Attwood has a wealth of information as well.
There are many more resources you may find useful in Chapter 9. You may
also find this next section helpful in your quest for more information.
Marshaling Your Resources to Get Support, Services, and
Funding
Most parents or adults with ASD will need at one time or another to ask for
support or advice. In this section, developing the survival skills that will make
you an effective advocate is discussed, followed by some basic information on
where to start looking for the services and funding that can help you.
How to Develop the Survival Skills You Need
Working through the educational systems in three different countries has
provided me with untold opportunities for observing and learning about how
systems work and don’t work, the politics involved, and how to ask the right
questions. This has been helpful in developing strong survival skills and enabled
me to become an effective advocate for my son.
Think of the work you do, and about what skills you used to get and keep
your job. Think of the skills used by other people working in the same company.
All these skills are the kind you will need either as a parent of a child with ASD
or as an adult with the condition. Applying the skills used every day in work
situations will help you obtain the services you or your child needs and keep
good relationships with all the people involved.
For example, the skills I developed while producing TV shows are the same

skills I used to obtain my son’s educational needs: gathering information,
analyzing data, listening to consultants’ and other team members’ expertise,
using good clear communication, learning to negotiate, preparing for meetings,
deciding what was worth fighting for, working as part of a team, expecting
professional behavior, monitoring progress, forgiving honest mistakes, and
rewarding a job well done. Sometimes people had to be kicked off the team or
there were major disagreements, but at the end of the day, there was a show in
the can.
Communicating. Every job involves communicating, whether it is with the
public, clients, or fellow workers and the boss. Even if you work the graveyard
shift as a security officer, at some point you need to be ready to communicate in
case of an emergency. Communication is the major building block of all
relationships, and relationships are critical for you to develop in order to get the
help you need or the educational program that is appropriate. Being effective at
communicating means being able to listen as well as to talk. It means being
polite and respectful, and clear about what you are talking about.
Planning. Every company has a business plan, and every worker has a plan
of action for what they will do that day, whether it is putting hamburgers
together or marketing software. Whether you are dealing with the school district,
the medical profession, or social services, planning should now be a part of your
life. Planning means looking at what your needs are today and will be in six
months, next year, five years from now, and so on. What do you envision for
your child or for yourself? How are you going to make that happen? How can
the services on offer help you reach your goals? All the decisions you make are
about reaching the dream or vision you have for the future.
Researching and analyzing. Before making major decisions at work, you
have to research your options and then analyze the information. If you are a chef,
you may research where to buy the supplies you need to prepare certain meals,
and then analyze the information you have uncovered to come up with the place
that best suits your needs and your customers’ requirements. If your company
needs a photocopy machine, you research the different suppliers and analyze the
various options. As a parent, or an adult with ASD, you need to research the
different treatments and diets, education, and work opportunities available. You
also need to research what funding options are open to you. Then, analyzing the
information will help you decide what plan of action is best for you.
Marketing. If you have a new product to sell, you have to convince your
clients that it is the best thing on the market since sliced bread. At work, when

someone has a plan of action they want adopted, the whole team has to be
convinced to jump on the bandwagon, or the plan will not fly. To sell the idea to
colleagues, marketing needs to take place. The person with the idea goes around
to his colleagues and persuades them of the benefits of his plan. The same needs
to be done once you have developed a plan of action: You need to convince the
other team members (e.g., the school district, your doctor) on the merits of your
plan. In getting what you need, you will need to market your ideas (using those
effective communication strategies) and present the information and analysis as
to how you came up with this plan and why.
Negotiating. At work, you may have to negotiate time off with your boss.
With clients, you may negotiate different prices or marketing plans. Either way,
you have to be prepared to discuss your needs, and to know how far you are
willing to go to get what you feel you need. When it comes to services, you may
not have as much room for negotiation, but in some cases you may. With the
school district, for example, you may be able to negotiate for an educational
program they are hesitant to provide due to cost or lack of experienced
personnel. Keep in mind that doing this is not easy, but it is possible.
Acknowledging and rewarding. Once you have obtained what you wanted
at work, or at least been given the opportunity to present your point of view, you
need to reward the people involved by acknowledging the time they spent
considering your proposal. The same holds true if you have negotiated and
signed a deal with a client, or even if you didn’t come to any agreement. A
simple “Thanks for taking the time to listen to me” or “I appreciate your
support,” whichever the case may be, is in order. The same applies to the people
you, as a parent or as an adult with ASD, have been “negotiating” with, even if
you don’t agree with the results.
FOOD FOR THOUGHT
On Taking Charge and Making a Difference
BY LINDA LANGE-WATTONVILLE
Early in my parenting and autism journey, when my two-week-old infant was
hospitalized for seizures, I received vital advice from our neonatal nurse, a mother of
a Down syndrome child. She handed me a book on seizures and urged me to
educate myself to be my child’s advocate and to make informed decisions. She
explained that, although there are many dedicated professionals, no one will care

about my child’s outcome more than I do. Not only did I take her sage words to heart,
I’ve met many other like-minded parents along the way, working to improve options
for their kids and other persons with ASD.
Parents of autism face a maze of biomedical and educational treatment options.
We bounce from one specialist to the next in search of answers and solutions. The
process may be a necessary evil, but the end result can leave parents feeling at
times helpless and ill-equipped to steer their child’s treatment direction. A
professional’s role is to provide advice, assistance, and teaching. But parents need
not become subordinate to professionals to the extent that parents lose sight of their
own child as a person, to know and understand at a deep level, as opposed to the
child being simply a patient or subject for treatment.
Because my daughter Madison’s seizures began at birth, I had the “benefit” of
suspecting a challenging road ahead. I plunged into newly emerging biomedical
information and options like Defeat Autism Now! At the same time, I read voraciously
to Madison, and exposed her to a variety of music, while she also received early
childhood intervention services in occupational therapy, physical therapy, speech
therapy, and the National Association for Child Development home program.
I tried to start a supervised home-based ABA [applied behavior analysis]
program when she was four, but Madison’s admission to O. Ivar Lovaas’s Wisconsin
replication site was denied because of her low IQ test scores. That same month, I
learned of the opening of a private applied verbal behavior school program for ASD
kids opening in Austin, Texas, a two-hour drive from our home. I moved so that she
could attend.
Madison was four and a half when she started the Horizon Program at Capitol
School of Austin, which was started by parent Joyce Gruger. Madison, who remains
nonverbal today, had some immediate success acquiring modified sign language to
communicate some basic desires. Even so, I anxiously searched for an educational
route to academic skills like spelling, reading, and writing, to lead to complex
communication. I was also painfully aware that Madison, at eight years old, would
age out of the program. I knew she still needed individualized teaching and that she
was not ready for inclusion in a public school, so I chartered a nonprofit called the
HALO (Helping Autism Through Learning and Outreach) School and began to stir up
local interest in developing an educational option for older ASD students needing
one-to-one academic instruction.
When 60 Minutes II featured parent/teacher Soma Mukhopadhyay working at
Carousel School in Los Angeles, I was encouraged to see her success teaching
severely autistic kids who otherwise had been routed strictly to life-skills programs. I
invited Soma to come to Austin to train teachers. She worked with students in
Madison’s school, and I extracted videotape footage to share during Soma’s half-day
workshop, attended by more than 240 professionals and parents from all over Texas,
funded thanks to generous help from parents like Gwen and Frank Milano.
Soma’s trademark Rapid Prompting Method (RPM) led to my daughter’s
educational and communication success, paving the way for her entrance into
regular education classwork in public school. And in the fall of 2003, Soma and I
collaborated our goals under the mission of HALO, offering organizational support for
Soma to spread her RPM to as many persons with ASD as possible.
I guess the moral of this personal story might be that it pays off to become an
expert in your own child, finding solutions and/or creating new ones that don’t yet
exist. Having the benefit of meeting hundreds of families of kids with ASD from all
over the world, I’ve come to believe the ASD kids who fare the best are those with

parents who dive into the effort of really knowing and presuming competence in their
child and working to cultivate the child’s strengths.
In 2002, Linda Lange-Wattonville founded the nonprofit organization Helping Autism
Through Learning and Outreach (HALO) for exemplary learning and innovative
teaching techniques for persons with autism. Since her departure from HALO in
2008, she’s continued her focus on creating educational, biomedical, and
employment options for her daughter.
Perhaps, as an adult, you didn’t get the results from a social worker you had
hoped for; but remember, you may be asking that person for help again down the
line. If you are a parent, you will be in touch with your local school district for
many years, so it is better even in disagreement to acknowledge their efforts. “It
looks as if someone took a lot of time out of their schedule to do this assessment
and I appreciate the effort” is a good way of acknowledging the effort made
before announcing that, unfortunately, the assessment did not address the real
issue.
Monitoring. Every business has to have some form of monitoring put in
place. The person making french fries has to monitor the amount of fries needed,
the temperature of the oil, and how long the fries have been in the fryer. A doctor
has to monitor the health of his patients postoperation. Even after your child has
an individualized education program (IEP) and everyone leaves feeling satisfied
that he is going to receive the support service he needs, monitoring must take
place. This is where good communication skills are really necessary, as
sometimes a gentle nudge is needed to get a service started.
For example, perhaps as an adult with ASD you have been assured a
promised service or some funding to begin at a certain date. If it does not, you
may need to make a few phone calls to find out what the status is, and what can
be done to get the support in place.
FOOD FOR THOUGHT
The Importance of Becoming an Expert
When my daughter was diagnosed with Asperger’s syndrome, her doctors gave me
one outstanding piece of counsel. They told me that my husband and I would now
become the experts on AS. We, in effect, would stand as her greatest advocates.
The truth of their prophecy has been shown virtually every day. The general public is

largely uneducated in AS. I have grown to believe that this is the single most
damaging element to the AS cause, that is, understanding and acceptance. Without
knowledge of the symptoms, outcomes and even confounding attributes, it is nearly
impossible for others to recognize and support AS individuals.
—Liane Holliday Willey, Pretending to Be Normal
How to Get the Information You Need
In an earlier section, we talked about the need to find out about services and start
the paperwork, as well as finding out about possible funding. Here are some
other tips.
Find out what is available. All therapies cost money. Adults may need
funds to supplement their wages. If you are not independently wealthy, someone
in the family will need to become the designated expert on “how to get the
treatment without it coming out of the family budget.” This person will need to
learn about their rights in terms of education, social services, and the health
system. If you have private insurance, find out what it will cover. Find out all
you can about any financial support you may be eligible for.
Learn to ask questions. Do not suppose that social services, early
intervention services, the school district, private insurance, or whatever agencies
you are turning to for help will automatically tell you what you have a right to.
Dare to ask questions. They have budgetary concerns. Sometimes they will tell
you only what they are offering on a regular basis—what they wish to provide—
not what you are entitled to. Most people have not been taught to think “outside
the box.” You will need to learn to ask the right question to get the right answer.
Think of it as playing detective. Often a case is cracked when the detective asks
a question that brings out information that people did not volunteer, as they felt it
was unimportant or did not concern the case. The same can be true when looking
for funding, employment support, or an appropriate education. As a parent, or an
adult with ASD, you will need to be proactive, and learn to communicate in an
assertive, nonaggressive manner. Always be polite. The people on the other end
of the phone or the other side of the counter are only doing their job as they have
been taught.

Talk to others in the same situation. Ask other parents or adults with ASD
in your area for some ideas about what they have been able to obtain. There are
many options for help out there. Each agency has a brochure explaining clients’
rights and lists advocates to turn to for help if necessary.
Learn to ask for and accept help. When you are used to being selfreliant, it
is difficult to ask for help or to accept help that is offered. My advice to you is:
Get over it! Remember the times you have helped others and keep in mind that
you will help others in the future. Now is not the time to have a stiff upper lip
and be too proud to accept help.
Learn how to answer questions in a way that fully explains your
situation. For example, at some point when answering questions on a form
regarding your child’s level of need, you may be asked, “Can your child walk?”
Most people would reply “yes” if the child is not physically handicapped.
However, some children with autism do not follow instructions and are not
safety-conscious; some will run into the street, others may have a tantrum. The
real question in your mind should be: “Is my child capable of getting somewhere
independently without adult prompting of any sort?” If the answer is “no,” the
correct response to “Can your child walk?” is, “My child needs help to move
safely from one place to another.”
Where to Start Your Search for Services and Funding
Having ASD or having a child with ASD can be mind-boggling and expensive.
Knowing what options are available medically, educationally, and financially is a
great source of comfort. Knowledge is empowering, and gathering information is
the first step toward making you feel that you are in the driver’s seat and that
you have choices about which direction you want to go.
Although there are federal mandates, you need to know about how these are
applied in your state, so check your local state agencies. Because each state is
different, some more complex than others, various sources are listed below and
some may be redundant. However, it is better to have too many places to look
for the information you need than not enough. Here are some ways to start
gathering information about services and funding:
Contact your local autism support group. Local autism chapters will be
able to give you advice on a local level. To find out what chapters are in your
area, visit the websites of national autism organizations.

Find out your rights and responsibilities. Contact the protection and
advocacy agency in your state, and obtain a copy of whatever information they
have in regard to your rights in the state where you live. You can find the
protection and advocacy agency in your area by going to the website for the U.S.
Department of Health and Human Services, Administration on Intellectual and
Developmental Disabilities
(acl.gov/Programs/AIDD/Programs/PA/Contacts.aspx).
Find out about possible medical and Medicaid benefits. It is best to
contact your state agencies; however, if you wish other information you can
contact the U.S. Department of Health and Human Services through its website
(hhs.gov).
Find out if you or your child is eligible for other services by contacting
your local State Council on Developmental Disabilities. Go to the National
Associations of Councils on Developmental Disabilities website
(nacdd.org/about-nacdd/councils-on-developmental-disabilities.aspx) to find
your state council.
Find out if you or your child is eligible for Supplemental Security
Income (SSI). Adults are eligible if considered disabled. For low-income
families there may be some possible funding for children. Contact the Social
Security Administration (ssa.gov, or call 800-772-1213) or your state agency for
more information.
Find out your rights in terms of private insurance coverage. At the time
of this writing, autism advocacy groups are lobbying for a federal law to require
autism coverage in private insurance plans. Meanwhile, there are many states
that have voted on insurance coverage. To find out the latest updates and see if
your state requires autism coverage, visit autismspeaks.org/advocacy/states.

5
Treatments, Therapies, and Interventions
“Therapies,” “techniques,” and “treatments” used with people with “autism”
present themselves like shops along the High Street; they have little relationship
to one another and each shop will encourage you to shop at their store and tell
you why their product is the product.
But each of these shops sells something quite different from the next. Some
deal with behaviors, some with brain development, some with biochemistry,
some with cognition or with the mind and some with the soul—and some don’t
deal with anything but make a good job of appearing to.
The problem with services behaving like High Street shops is that people
with “autism” don’t just have problems with behavior or communication or
perception or their senses or with brain development or with biochemistry, or
with stress levels or with troubled souls. Because people with autism are whole
beings, most of them have trouble with the whole lot, which all interconnect and
feed into each other at some point.
To get any all-round service, people with autism don’t need a High Street of
competing shops, they need a department store where each department is aware
of what the others offer and points people in the direction of other services
which complement their own.
—DONNA WILLIAMS, Autism: An Inside-Out Approach
WHEN Jeremy first stood up and walked on his own, his first steps were not
toward me. He got up and followed the patterns in the rug. We were living in
Paris at the time, and psychoanalysis was the treatment on offer to cure Jeremy’s
autism. When my husband was offered the opportunity to work on Legoland in
Berkshire, we jumped at the chance to move to England, where at least Jeremy
could attend a special needs school. Soon after arriving in England, I read Let
Me Hear Your Voice by Catherine Maurice, and I also met Cathy Tissot, whose

autistic son attended the same school as mine. Neither of our children were
progressing at school and so we decided to try the Lovaas program, a home-
based applied behavior analysis (ABA) program. At that time, ABA programs
were still relatively new and we were one of the first families in the UK to go
this route.
I remember going to cathy’s house one evening, trying to get up the nerve to
call the Life Institute, the Lovaas center in California, to find out if there was a
consultant who could come and put on a workshop to train us and students to
work with our children.
Making that phone call changed my life. That was the moment when I
stopped being a victim of the systems in place, took control, and realized I was
not powerless to help my son.
As a child, Jeremy had many challenges, and he continues to have some. We
have tried different biomedical, dietary, and homeopathic treatments; different
educational strategies; sensory therapies; occupational, physical, and speech
therapy—anything that made sense to help Jeremy, based on his needs. Some
have been very helpful, others have not. As he learned to communicate and type,
he was able to tell us what the therapies felt like for him and what he felt was
useful. Now that he is a young man, he decides what he would like to try or
continue to help him in becoming more independent and reaching his goals.
How to Know What Will Help
In the past, there were practically no options for people with ASD in terms of
treatments, therapies, and interventions, and this was the source of much anguish
and stress. Nowadays, although we still don’t know the cause of autism, we
know more about what can help people, depending on the symptoms they are
showing. Options abound, and the challenge is more about getting the right
information and trying to decide what best fits the needs of the person with
ASD, before figuring out how to access that treatment or therapy.
In Chapter 4, where and how to get information was discussed. In this
chapter, you’ll learn more about how to know what can help a particular person
with ASD, and about some of the different treatment and therapy options that are
available.

Knowing About the Person with ASD
Although there are more therapies and strategies now than ever before, there is
still no magic bullet, and every person is different. If you are a person on the
spectrum who is fully functional and has no health, emotional, or relational
issues: Congratulations! You can skip the rest of this chapter.
Other adults with some challenges may find some useful information here.
Many very able people on the spectrum suffer from sensory challenges, gut
issues, allergies, anxiety, and panic attacks.
Parents and educators, the first thing you need to do is to look at the person
with ASD whom you are trying to help, no matter how young or old he or she is.
As discussed earlier in this book, autism is now generally accepted to be a
whole-body expression, as a result of genetic predisposition with an
environmental impact coming into play. For years, scientists focused only on
teaching or psychological strategies and not medical or dietary interventions. As
more is discovered about autism, including the gut and brain connection, the
more options a parent should consider. Being a parent means becoming an expert
in what can help your child.
Here are some things to consider:
The age of the person. A person who is diagnosed at age ten or sixteen or
twenty-five or even forty-five will have different therapy and treatment
needs from a child diagnosed at eighteen months or three years of age or
five years of age. For example, a toddler may need intensive early
intervention to learn to speak or develop a system of communication. He or
she may be showing some medical challenges, such as immune system
problems, allergies, stomach problems, diarrhea, and constipation issues.
An older child may have language skills but limited social skills. Adults
may have sensory processing issues that could be helped through
physiologically oriented therapies. Remember that although for a long time
people have been talking about the early years as the “window of
opportunity” for learning, recent research has shown that brains have
neuroplasticity, which means that they continue to reorganize themselves by
forming new neural connections throughout life.
What medical or health issues the person has. Does your child suffer from
constant diarrhea or constipation? Is he overly sensitive to noise and light?
Does he bang his head? Is he a finicky eater who will only eat a few

specific items? Does she have temper tantrums? These are not part and
parcel of autism, but they are clues to health issues your child might be
experiencing. Some possible medical challenges may be apparent, others
may not.
What the person is like in terms of functioning level or ability. ASD covers
a wide range of functioning in terms of behavioral characteristics,
communication and social awareness, and sensory integration issues. If a
formal diagnosis has been made, any assessments made at that time may
give you more information about yourself or the person you’re helping.
There are many different assessments that are used, depending on the age
and ability of the person: speech and language, occupational therapy,
functional behavior analysis, neuropsychiatric tests, and developmental,
intelligence, and academic tests. A parent of a child with ASD has a good
knowledge base of what their child is able or unable to do, just from living
with him and observing his capabilities and deficits.
The person’s behaviors. A diagnosis of autism is still based on observable
characteristics, and it is important to look at a child’s behaviors and try to
understand what they indicated earlier. Is the child covering his ears
frequently when there is a lot of activity in the room? Does he have
tantrums when you change his routine? Is he always trying to remove all his
clothes? Does he appear clumsy and uncoordinated?
Whether the person is a visual, auditory, or kinesthetic learner. Many
people assume that all people with ASD are visual learners and therefore
that visual strategies will work with everyone. This is not the case, as some
people are auditory learners. It is helpful to establish which sense you or
your child uses best.
What the person’s strengths and weaknesses are. Every person has
strengths, and if you can identify them, you can build on them to fortify the
weaknesses. It is important to focus and build upon the child’s strengths to
motivate him to learn, to create opportunities to learn social skills, and to
explore possible work options for the future.
What goals this person has, or you have for your child. Each person needs
to think about what their overall goal is. Perhaps it is a general goal of
“recovering” a child from autism; perhaps it is to have the child reach his

potential. Perhaps it is addressing one particular area of a person’s life or
skill area where he needs to learn practical or coping skills.
What treatments the person has already had (if any). Looking at what has
been helpful and what has not can be useful at times in analyzing whether
or not a particular treatment is worth pursuing.
Whether or not it is time to reevaluate. Is the person changing, growing?
Perhaps a treatment appropriate at one time is no longer the case. Every
once in a while it’s a good idea to step back and decide whether the current
treatments are still useful or appropriate. It may be time to change or
“tweak” a current treatment.
As Donna Williams suggests in the quote taken from her book Autism: An
Inside-Out Approach at the beginning of this chapter, all these therapies,
treatments, and interventions truly need to be looked at with a department-store
mentality, rather than a High Street approach. ASD is all-invasive, and rarely
does one therapy alone provide all the help a person needs. Therapies or
treatments are not exclusive of others, and a visit to different departments or
types of therapies is often needed.
What to Consider When Looking at Treatment Options
After looking at the needs of the person with ASD, there are other factors to
consider before deciding on what treatments and therapies to pursue at this
particular time. Here are some things to consider when looking at treatment
options:
The potential risk to the individual. “First, do no harm” should be your
mantra. Does the therapy have side effects? Is it risky to mental or physical
health? Do the possible risks outweigh the possible gains? Does it use any
form of punishment?
The family. ASD is a family thing, as they affect everyone in the household
either directly or indirectly. But so does the treatment. The parents have to
think about how the treatment or therapy fits into the family. What kind of
involvement is expected from others? How will this treatment affect any

siblings? Is the family going to be able to follow through with whatever the
professional deems necessary (e.g., giving supplements on a regular basis,
sticking to a diet, generalizing skills learned)? Can the family commit to the
prescribed treatment or therapy for whatever time it takes or is
recommended? Are all responsible adults in the household in agreement
about the particular treatment and supportive of seeing it through? If the
treatment fails, how will it affect the family?
The financial cost of the therapy. Money does not grow on trees. Do you
have to sell your home to provide this therapy or intervention? Why is the
therapy so expensive and who is benefiting financially from the high cost of
this therapy? Is insurance going to cover it? Are you asking for the school
district or private health insurance to fund the treatment? If yes, do you
have the tenacity to advocate effectively to obtain the appropriate type of
service?
Where did the information about the therapy come from? Is the person or
organization suggesting the therapy benefiting financially? Unfortunately,
autism has become a big business for many.
How will the treatment be integrated into whatever existing program the
child already has? For example, in the case of a special diet, how will it be
carried over to all of the child’s environments? Will the treatment’s
inclusion be at the expense of other equally important aspects of the child’s
program?
What evidence exists to validate this method of treatment? Is the therapy
being touted as a miracle cure for everyone? Is there scientific validation of
this treatment? What does the anecdotal evidence have to say?
Is this treatment or therapy autism-specific and, if not, has it proved
effective with individuals with ASD? Some treatments may not be
specifically created with ASD in mind, but can be very beneficial.
However, it is important to verify how others with ASD have done with this
treatment. For example, early intervention is a great concept. Yet some
programs do not work well with all children with autism, because most
children with ASD do not imitate or tune in to social cues the way other
developmentally delayed children do, and therefore need first to be taught
how to imitate or understand those social cues.

How is the effectiveness of the therapy going to be measured? With any
treatment or therapy, there should be record-keeping in order to track
effectiveness. Parents need to ask who is responsible for taking data, how
data is taken, how often it is recorded, and how often it is reviewed.
What is the track record of the provider of the therapy or treatment? How
long have the practitioners been doing this therapy and with what age
group? What level of ability has this person worked with? If it is dietary
supplements, is it a reputable company that is making them?
Does the person prescribing the treatment or supervising the course of
treatment have all pertinent information about the person being treated?
Make sure the person knows as much about the individual in question as
possible. It’s a good idea to write down anything you think the provider
should know, especially if she is dealing with a young child or someone
who is unable to communicate independently about himself. Information
that is helpful includes other treatments that may have been tried, the
person’s likes or dislikes, and particular behaviors the practitioner should
know about. Any allergies to food or medication, phobias, chances of
seizures, special diets, and so on are all valuable information.
What do lab tests show? Some lab tests can help in understanding if the
child has medical challenges or nutritional deficiencies and would benefit
from some treatments over others. However, it is important to ensure that
the labs used and doctors consulted are reputable and knowledgeable about
treating autism.
FOOD FOR THOUGHT
She Had Experience, Just Not the Right Kind
My son is very challenged by sensory integration issues and has many fine and
gross motor problems. One year he came home from high school with rug burns on
his chest and back, the result of an inexperienced occupational therapist’s attempts
to perform sensory integration on him. After a few phone calls (and I must say no
apology from the therapist or the school district in question), two individualized
education program (IEP) team meetings, and a sensory integration (SI) and
occupational therapy (OT) assessment, another occupational therapist was brought
into the picture. At this point, concerned not only about the quality of my son’s
educational experience but also for his safety and comfort level, I asked the

proposed therapist specific questions about her experience. The therapist said she
had a few years of experience with sensory integration, as well as working with
adolescents with autism. All seemed well with the world.
After a few months, I received reports from the school that the therapist was
concerned about the occupational therapy goals for my son. She felt the goals were
unrealistic, and that he was not progressing on any of them. The goals the IEP team
had identified were fastening buttons and snaps on his pants and learning to cut with
a knife. I met with the therapist to ask how I could help. After chatting with her, I
realized that though she had worked with adolescents with ASD, they had been able
students who could follow instructions and did not have the same level of motor
difficulties as my son. The therapist had not needed to teach these skills before and
was unable, in spite of her professional training, to figure out a way to teach my son
these basic tasks. I had not thought before to ask about the ability level of the
children she had worked with, thinking that as a professional she could figure things
out for varying levels of ability.
The therapist was at a loss about how to teach my son, even though he had a
well-trained school aide who was more than willing to help. Needless to say, my son
learned to fasten the snaps on his pants after the aide analyzed the different steps,
identifying which ones were creating difficulty for him, and then wrote up a task
analysis and worked on teaching him this skill in a systematic manner.
So, the moral of the story is, ask the right questions. No matter how long my son
has been in the system, I am always learning a few more questions that I should
have asked.
Treatments, Therapies, and Interventions
This is not meant to be an in-depth overview of all the treatment options, but
rather a brief explanation about the most well-known or currently popular ones.
Resources are included for those who want more information. Therapies and
interventions are listed here for informational purposes only, and this does not
mean that they are endorsed by the author or that they are prescribed for any
particular person. The reader should investigate further the treatments that
interest them and make an informed decision with professionals and others who
may be concerned.
General Resources
If you are a parent, you’ll have to become an expert in treatments and
educational strategies. In this chapter, I’ve outlined some basic information.
Keep in mind that there are more treatments and therapies available than are

listed here. This chapter covers the most widely known and recognized
treatments to give you the basic knowledge you need to start your understanding
and search for help. Again, remember to keep you child in mind, as well as who
you are getting the information from. Remember that the treatment of autism is a
growing and changing field, and new discoveries are continually being made.
Make sure you are getting the most current information. In the end, you will
have to decide how to best help your child.
Here are some websites and books for a more in-depth understanding of
options to consider. Following each treatment section are more specialized
resources.
“Advice for Parents of Young Autistic Children” by James B. Adams, PhD;
Stephen M. Edelson, PhD; Temple Grandin, PhD; Bernard Rimland, PhD;
and Jane Johnson. Available on the ARI website at
autism.com/index.php/understanding_advice.
The Autism Revolution: Whole-Body Strategies for Making Life All It Can
Be by Dr. Martha Herbert and Karen Weintraub. Dr. Herbert is a Harvard
Medical School researcher and clinician. Her website is
autismrevolution.org. The companion website to her book with
complementary information is autismwhyandhow.org.
Child by Ricki G. Robinson, MD, MPH (drrickirobinson.com). Dr.
Robinson is the medical director of the Profectum Foundation
(profectum.org), was a founding board member of Cure Autism Now
(CAN, now Autism Speaks) and the Interdisciplinary Council on
Developmental and Learning Disorders (ICDL), and currently serves on the
Scientific Review Panel of Autism Speaks. There is training available on
the Profectum website.
Healthy Bodies
Effective teaching methods are extremely important, but so is physical and
neurological health. In Chapter 3, possible causes of autism were discussed, as
was the brain–gut connection. If a child is experiencing pain or if the body is not
absorbing needed nutrients, learning can be difficult, if not impossible.

Remember that behavior is a form of communication. If a person often has
tantrums for no apparent reason, it could be that he or she is in pain of some sort.
Some children’s digestive systems are not working properly, making it
impossible to digest essential nutrients needed for brain development. If a child
has sensory challenges, this will impact everyday life. Scientists are hard at work
discovering all the secrets the brain has to offer, and much is still unknown.
However, as there is a definite connection between the body and the brain, a
healthy body is a priority.
Before starting any of these interventions, data should be taken over at least
a two-week period on all of the person’s negative (tantrums, hyperactivity,
bedwetting) and positive (communication, interactive play, staying on task, eye
contact) behaviors. This will give a baseline of the behaviors before treatment.
During and after treatment, the same types of notes should be taken. This will
enable you to judge whether or not the treatment is having any effect.
Dietary and Nutritional Approaches
It’s a given that a nontoxic environment is best for all, and that we are what we
eat. Many on the spectrum are particularly sensitive.
What follows is a basic overview of some of the dietary and nutritional
approaches that are being used to treat ASD. Some of these approaches have
empirical research to back them up. Some have much anecdotal testimony. Some
of these approaches are noninvasive and worth trying; others should only be
done under the care of a knowledgeable health professional.
These approaches can be effective in helping people whose metabolic
systems may not be functioning properly. It may be that their systems are not
processing essential nutrients properly, possibly because of a food allergy or
intolerance, a “leaky gut” (where the wall of the intestine does not do its job of
keeping its contents separate from the bloodstream), or high levels of mercury or
other toxic metals. It is possible to check for food allergies by adding or
removing the suspected culprit from the person’s diet and taking data on their
behavior before and after. Essential nutrients can be tested in the same way.
However, there are specific tests and analyses that can be done that are more
indicative of what is going on in the metabolic system.
Dietary and nutritional interventions can be confusing for anyone who is not
medically inclined. Please keep in mind that what follows is not a complete

analysis of all the possible interventions, and that interventions are constantly
being improved upon.
Eating Healthy
The general public over the last ten years has learned more and more about the
importance of making good food choices, from eating organic foods to
consuming less sugar and fewer additives. As humans, we need certain
fundamental nutrients for our bodies to function well and these include certain
vitamins and minerals, essential fatty acids, and amino acids (from protein).
These essential nutrients can be found in a balanced diet rich in fruits and
vegetables, protein, and certain fats.
FOOD FOR THOUGHT
The Power of Sharing Knowledge
Thirty years later, Dr. Rimland and I had lunch down the street from my home and
office in Connecticut. I expressed how inadequate I felt in understanding the digestive
and immune system problems of the autistic children I was seeing in increasing
numbers. I asked Dr. Rimland if he could gather some smart people to brainstorm the
problems. I knew one smart person, Jon Pangborn. Bernie knew dozens around the
world. Within a few months he had organized and named the first DAN! meeting, an
extraordinary gathering of thirty practitioners, researchers, and parents who found
common ground in a new map of the landscape that emerged from the mirage that
once simply cast blame on mothers.
—Sidney MacDonald Baker, MD, from the Defeat Autism Now! 2002 Conference
Presentations Book
Eating healthy is a good starting point. Some guidelines:
Reduce or avoid:
additives such as artificial colors, artificial flavors, and preservatives

junk food (e.g., fried chips)
added sugar (e.g., candy, soda)
fried foods or foods containing trans-fats
Eat three to four servings of vegetables and one to two servings of fruit
each day. Corn is not considered a vegetable; it is a grain. Potatoes have
limited nutritional value, especially when fried. It’s better to eat whole
fruits than to drink fruit juice, but fruit juice is a better choice than soda.
Eat at least one to two servings per day of protein (meat, chicken, eggs,
nuts, beans). Some children may need smaller protein snacks eaten more
frequently. This could be the case if your child is irritable between protein
feedings.
Eat organic foods whenever possible, as they contain lower levels of
pesticides. As well, organic milk and chicken have higher levels of essential
omega-3 fats.
The Feingold Diet
This diet was developed by Dr. Ben Feingold to treat hyperactivity in children.
In his book Why Your Child Is Hyperactive, he recommends removing artificial
colorings and flavorings, salicylates, and some preservatives from children’s
diets. Salicylates are a group of chemicals related to aspirin and found in certain
fruits and vegetables. His hypothesis was that more and more children were
being seen and treated for hyperactivity at the time the book was published due
to the increase in artificial ingredients being added to our food and the increase
in the consumption of processed foods. The Feingold Association of the United
States (feingold.org) can provide further information.
Gluten-Free/Casein-Free (GFCF) Diet
The GFCF diet has been developed for individuals who have allergies or a toxic
response to gluten (found in wheat, oats, rye, and barley, among others) and
casein (found in dairy products).
Responses to gluten and casein can include diarrhea, constipation,
hyperactivity, red face or ears, breaking wind frequently, and pale skin.
(However, it is important to note that these symptoms can be an indication of

other problems.) Basically, peptides that are derived from an incomplete
breakdown of certain types of food are affecting neurotransmission within the
central nervous system. Research studies as well as hundreds of anecdotal
reports have shown dietary intervention as a useful treatment for alleviating
some of the symptoms of autism in children. Out of 3,593 reports on the GFCF
diet submitted to Autism Research Institute (ARI) Survey of Parent Ratings of
Treatment Efficacy, 69 percent of children fared better and 28 percent saw no
change. It is less clear what the effect is on adults. This type of treatment, though
constraining in terms of diet, is not harmful, and it may be worth removing
gluten and casein from your child’s diet to see if it has an effect on his behavior.
It is recommended to remove 100 percent of dairy for one month and gluten for
three months. There are lab tests that can be done as well. Some individuals have
challenges with corn, soy, and other foods. To follow this diet accurately and to
ensure that all products are GFCF, it is important to carefully read product labels.
For practical information and support from other parents who have
experience in this area, visit tacanow.org/tag/gfcf.
RESOURCES
Autism Network for Dietary Intervention: autismndi.com
Special Diets for Special Kids by Lisa Lewis
Nourishing Meals by Alissa Segersten and Tom Malterre
The Kid-Friendly ADHD and Autism Cookbook by Pamela Compart, MD;
Dana Laake, RDH, MS, LDN; Jon B. Pangborn, PhD, FAIC; and Sidney
MacDonald Baker, MD
Digestive Wellness by Elizabeth Lipski
The Specific Carbohydrate Diet (SCD)
The SCD is based on the diet that early man ate before agriculture began and
consists of meat, fish, eggs, vegetables, nuts, and low-sugar fruits. The SCD
consists basically of avoiding all carbohydrates and most sugars (except
monosaccharides in fruit). Some individuals with autism have low levels of
digestive enzymes for certain sugars and carbohydrates. It makes sense to
consider the SCD in patients who do not respond well to a GFCF diet. To insure

proper implementation of the SCD, it is recommended to find an experienced
nutritionist to help you.
RESOURCES
Breaking the Vicious Cycle by Elaine Gottschall
breakingtheviciouscycle.info/home
pecanbread.com
The Ketogenic Diet
This diet has been developed for people who have seizures. It is high in fat, low
in protein and carbohydrates. When the body burns fat instead of carbohydrates
for energy, it creates ketone bodies, which in turn suppress seizure activity. This
is not a healthy, balanced diet; it is difficult to undertake, and it has to be tailored
specifically for each person. It is usually considered to be a last-ditch effort
when medications are no longer effective, and should not be attempted without
the supervision of a neurologist and a knowledgeable dietician.
RESOURCES
epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet
Ketogenic Diets by Eric H. Kossoff, MD; John M. Freeman, MD; Zahava
Turner, RD, CSP, LDN; and James E. Rubenstein, MD
Vitamin and Mineral Supplements
As explained earlier, proper nutrition is necessary. However, the typical U.S. diet
is lacking in needed vitamins and minerals. One way to get more vitamins and
minerals is by juicing vegetables and fruits. Another way is by taking
supplements. Not all supplements are created equal. Some manufacturers of
supplements voluntarily participate in the Dietary Supplement Verification
Program (DSVP) of the U.S. Pharmacopeia (USP). The USP is a program that
verifies that the contents of a supplement match the label. Check for a USP or
DSVP label, or go to usp.org/USPVerified to check a product.

Vitamin B6 and Magnesium
This is one of the most studied nutritional supplements, with twenty studies
published since 1965. These studies have shown benefits to taking vitamin B6
(often combined with magnesium), and none have shown harm. In fact, almost
all of these studies found that 30 to 40 percent of children and adults with autism
benefited from high-dose supplementation of vitamin B6 with magnesium. Some
of the benefits reported have been improved eye contact, improved language,
reduced self-stimulatory behavior, reduced aggression, and reduced self-
injurious behavior.
Essential Fatty Acids
It has been recognized that EFAs are critical nutrients that have a very important
role to play in the metabolism and development of the body. However, due to the
way our foods are now processed plus the fact that we do not swallow a daily
spoonful of cod liver oil the way our grandparents did, it has become apparent
that most of us are not getting the fatty acids our bodies need.
Two general categories of essential fatty acids are omega-3 and omega-6.
There are many scientific studies showing that people need EFAs, and that most
in the United States do not consume enough. Four published studies have found
that children with autism have lower levels of omega-3 fatty acids than the
general population. To date, there have been nine treatment studies for
children/adults with autism on the effects of EFAs, six positive and three
inconclusive or negative.
Other Vitamin and Mineral Supplements
For more information on research, and the importance of the many other
different vitamins and minerals, read “Summary of Dietary, Nutritional, and
Medical Treatments for Autism—Based on Over 150 Published Research
Studies” by James B. Adams, PhD
(autism.asu.edu/Docs/2012/Summary_dietary_nutritional_medical_treatments9-
30-12.pdf).

Other Nutritional and Medical Treatments
There are other important nutritional and medical treatments that have been
effective for some, and ineffective for others, and parents need to figure out what
could be useful for their child. These treatments include probiotics, digestive
enzymes, amino acids, carnitine, melatonin, thyroid supplementation, sulfation
therapies for methylation/glutathione/oxidative stress, immune system
regulation, and hyperbaric oxygen therapy (HBOT). There is not space here for
an in-depth discussion of the treatments, but there are resources below with
specific information on each treatment.
As a parent, you are an expert on your child. As a parent of a child with
autism, you’ll need to do the homework on what could help your child. Reading
studies and discussing with knowledgeable professionals and parents is
necessary. Below are good resources for parents to consult for a more in-depth
understanding of the options available.
RESOURCES
“Summary of Dietary, Nutritional, and Medical Treatments for Autism—
Based on Over 150 Published Research Studies” by James B. Adams,
PhD
(autism.asu.edu/Docs/2012/Summary_dietary_nutritional_medical_treatments9-
30-12.pdf). This is a clear summary of the rationale and research on
dietary, nutritional, and medical treatments, and should be read by
anyone considering the above approaches.
Nutritional Supplement Use for Autistic Spectrum Disorder by Jon B.
Pangborn, PhD. This is published by the Autism Research Institute,
founded by Dr. Bernard Rimland. Dr. Pangborn is not a medical doctor,
but has been associated with the Autism Research Institute for over
thirty years and practiced as a licensed and certified nutritionist (in
Illinois).
Talk About Curing Autism (tacanow.org), founded by Lisa Ackerman, is a
very supportive resource for families. The website has lots of
information including an autism journal to help understand about
possible treatments, and support groups around the country. Again, as a
parent you will need to chose what makes sense for you and your child.

Medical Academy of Pediatric Special Needs (MAPS) (medmaps.org):
Practitioners are listed here as well as training opportunities for medical
professionals.
—To find practitioners by geographical area, visit the websites of
MAPS, Autism Society of America, and Autism Speaks.
—For a list of what to consider when searching for practitioners,
go to the ARI website
(autism.com/index.php/treating_finding).
Conventional Medications
Medications can be used to treat some of the behaviors associated with autism.
Certain drugs are used to control seizures. For some people, drugs can be helpful
for reducing anxiety, obsessive-compulsive behaviors, hyperactivity, self-
injurious behaviors, attention deficits, and depression. Medications used include
anticonvulsant drugs, stimulant medications, tranquilizers, antidepressants, and
opiate antagonists. No medication should be tried without the advice of a
knowledgeable physician familiar with ASD and the person being treated. As
well, these medications should be part of an overall treatment program, as these
medications may help with symptoms but do not always address the cause. Most
of these medications should be tried in very tiny doses, less than the
manufacturers’ recommendation. Care should be given especially when treating
young children, as many of these medications have only been researched for use
in adults.
For more information on particular drugs, read the section on psychiatric
medications in “Advice for Parents of Young Autistic Children” (2012, Revised)
available at the ARI website at autism.com/index.php/understanding_advice.
Addressing Sensory Processing Challenges
Jean Ayres, an occupational therapist, first described sensory integration
dysfunction as a result of inefficient neurological dysfunction. The auditory,
visual, tactile, taste, and smell senses are what give us information about the

world around us. Individuals with sensory disorders have senses that are
inaccurate and send false messages. Children and adults with hypersensitivity
overreact to stimuli, while others have hyposensitivity, which prevents them
from picking up information through their senses. Sensory malfunction can also
be an inability to understand and organize sensory information when it is
received. Sensory integration dysfunction symptoms are many and varied,
depending on which sense or senses are perturbed. When he has auditory
sensitivities, a child may cover his ears, overreact or underreact to noise, or try
to escape from groups. Tactile sensitivities can be indicated by a seemingly high
tolerance for pain, refusal to keep socks and shoes and sometimes clothes on,
difficulty in brushing teeth and hair, or dislike of having hair washed. Visual
issues may be apparent if a child is sensitive to light, likes to watch things spin
or move (tops, hands on a clock), spins himself or other things, or turns lights on
and off. These are just a few examples of behaviors that display sensitivities in
certain areas.
Sensory issues are not autism-specific, and therefore the methods below
were not specifically developed for people with autism. Many children and
adults who have sensory disorders do not have ASD.
There is a strong connection between sensory processing and learning. If a
child cannot visually or auditorily process information correctly, it will be
difficult for him to learn. For some it will be hard to function in certain
environments. There is a connection between visual processing and how we
move in space, and hand-eye coordination. This impacts emotional development
as well. Sensory processing challenges are significant for many on the spectrum,
impeding their ability to learn and to function on a daily basis.
Some sensory challenges may be improved by dietary and nutritional
approaches discussed earlier in this chapter. It is important that you choose
therapy providers who have experience with ASD and the age group of the
person seeking treatment.
Sensory Integration (SI)
This is practiced by occupational therapists, who contend that many behaviors
exhibited by children and adults with autism are an attempt to avoid certain
types of sensations or seek preferred stimuli in order to balance out their nervous
system. Occupational therapists who are well trained in sensory integration

behavior and skills use various strategies to assist individuals with ASD to
process and use sensory information. Data from patient records show these
improvements. SI can be a valuable intervention, integrated into a child’s
program, depending on the person’s sensory issues.
RESOURCES
The Out-of-Sync Child and The Out-of-Sync Child Has Fun by Carol Stock
Kranowitz (out-of-sync-child.com)
Raising a Sensory Smart Child by Lindsey Biel, OTR/L, and Nancy Peske
(Sensory Smarts: sensorysmarts.com)
Auditory Integration Training (AIT)
These methods, developed by Dr. Guy Berard and Dr. Alfred Tomatis, are based
on the theory that some people have hypersensitivity toward certain sound
frequencies, making some common sounds painful to hear. In AIT, individuals
wear headphones and listen to modulated sounds and music, with certain
frequencies filtered out. This is done over a period of time. It is not known
exactly how it works, physiologically speaking; however, individuals have
reported benefits from these listening methods. An ARI review of twenty-eight
reports of studies undertaken between 1993 and 2001 on AIT developed by Dr.
Berard favors this method as a useful intervention. Other listening programs
have been developed that can be used at home without any special equipment,
and some are listed below.
RESOURCES
Dr. Berard: berardaitwebsite.com/index.htm
Dr. Tomatis: tomatis.com
The Sound of a Miracle by Annabel Stehli (about her daughter’s recovery
from autism through AIT)
Listed below are two programs that have been developed for home and
school use. For more information, read about the different types of programs and
ask professionals and parents who have used them about the benefits and

drawbacks of each of the different methods.
Samonas Auditory Intervention: listening-ears.com/samonas.html
The Listening Program: advancedbrain.com/the-listening-program/the-
listening-program.html
Vision Therapy
Vision processing is important for learning, for making sense of the world
around us. As Dr. Carl Hillier puts it, “Eyesight is the ability to discriminate the
differences between the small things. Vision is the ability to derive meaning
from the world, and to guide the intelligent movement of the body.” A regular
eye exam will tell you if your child has 20/20 vision, but it won’t tell you if your
child is having visual-processing difficulties. An assessment should be done by a
developmental optometrist. If needed, vision therapy will be recommended.
Vision therapy is an individualized treatment program designed to correct visual-
motor and/or perceptual-cognitive deficiencies.
RESOURCES
To find a developmental optometrist, go to covd.org.
To learn more about vision versus eyesight, read “Vision and Its Valiant
Attempt to Derive Meaning from the World” by Carl G.Hillier, OD,
FCOVD, at visionhelp.com/vh_add_07.html.
To find out more about vision therapy, go to visionhelp.com.
To read about the connection between vision and development and learn
some activities to try with your child, read Visual/Spatial Portals to
Thinking, Feeling and Movement by Serena Wieder, PhD, and Harry
Wachs, OD.
FOOD FOR THOUGHT
The Verbal Behavior Approach

BY MARY LYNCH BARBERA, PHD, RN, BCBA-D
The verbal behavior (VB) approach is a type of applied behavior analysis (ABA)
program used to teach children with autism. More than five hundred articles
published since 1985 concerning ABA and autism have elevated ABA to be the
treatment of choice for children on the spectrum, especially young, newly diagnosed
children (Lovaas Institute, 2013).
The move toward the VB approach (as opposed to more traditional ABA
programs) began in 1998 with the publication of Teaching Language to Children with
Autism or Other Developmental Disabilities (Sundberg & Partington, 1998). Since the
late ’90s, with more published research studies and VB books including The Verbal
Behavior Approach: How to Teach Children with Autism and Related Disorders
(Barbera & Rasmussen, 2007) and The Verbal Behavior Milestone Assessment and
Placement Program (Sundberg, 2008), many home and school ABA programs are
now using the VB approach.
I am often asked, “Which is better, ABA or VB?” I say that this is like asking,
“Which is better, a pet or a cat?” In a nutshell, ABA is the science of changing
behavior and VB is a type of ABA, just as a cat is a type of pet. As a BCBA, I follow
the principles of ABA first and foremost, but I also use B. F. Skinner’s analysis of
verbal behavior (or, in easier terms, the VB approach) as I assess and teach
language and learning skills (Barbera, 2009). After working with hundreds of children
and some adults on the autism spectrum, I have found that implementing
scientifically proven ABA/VB techniques results in improvements in behavior,
language, and learning skills no matter what the age or ability level of the child.
It all started in 1957, when B. F. Skinner published his classic book titled Verbal
Behavior. This book described language as a behavior and defined verbal behavior
as any behavior mediated by a listener. One thing to keep in mind is that a child does
not need to speak to be “verbal” since verbal behavior includes gestures, sign
language, exchanging pictures, and pointing. A child who falls to the floor or hits you
is also displaying verbal behavior. As long as a listener is present and a child is
displaying some behavior to communicate, that behavior is verbal behavior.
In Verbal Behavior, Skinner coined the term “verbal operant” and created names
for the four elementary verbal operants: the mand, tact, echoic, and intraverbal.
These four verbal operants are the parts of verbal behavior that traditional linguists
and speech therapists often call “expressive language.” Skinner also described
“listener responding,” which is equivalent to receptive language.
Using the VB approach, both receptive and expressive parts of language are
seen as behaviors that can be taught with each function of the word being taught
directly. The various functions of the word “ball,” for example, would be taught usually
by using verbalization or sign language. The child would be taught to ask for or, in VB
terms, mand for the ball when he wanted it. Once the mand is mastered, the child
would then be taught to label (tact) a picture of a ball, to say (echo) “ball” when the
adult said “ball,” to touch the ball when directed to do so, and finally to answer
questions (respond with an intraverbal) about a ball.
When starting a VB approach program, it is important to assess what items and
activities your child likes and to pair the work area, the people who interact with your
child, and the materials with these items. Once the reinforcers have been identified
and paired, the central theme for a VB approach is to teach your child how to request
things since the mand should be the centerpiece of VB programming.

Because the teacher and parents focus on pairing and manding, the child should
willingly approach them, as opposed to some other programs where the child is
brought to the worktable, whether he wants to be there or not. In the VB approach,
the child immediately starts receiving the things he likes. Once this relationship has
been established and the child is responding to and asking for reinforcers, other work
is slipped in very gradually.
Studies show that children with autism, in order to make optimal progress,
require up to forty hours per week of school and/or home-based ABA programming
with well-trained therapists and oversight by skilled professionals. But, for a variety of
reasons, including lack of skilled professionals and financial constraints, many
families cannot implement full ABA programs. But, even without implementing forty
hours per week of ABA/VB programming, there are several scientifically proven
techniques (such as focusing on the mand first) that parents and teachers can
immediately begin using to help children with autism and related disorders.
Mary Lynch Barbera, PhD, RN, BCBA-D, offers a unique perspective as a parent of a
child with autism, a Board Certified Behavior Analyst, and an author. In 2007, she
published The Verbal Behavior Approach: How to Teach Children with Autism and
Related Disorders (which is now available in several languages). For more
information about Dr. Barbera or the VB approach, visit
barberabehaviorconsulting.com.
Irlen Lenses
Irlen lenses were developed by Helen Irlen for individuals with a sensory
perceptual problem known as Irlen syndrome. Irlen’s theory is that people with
reading problems and perceptual difficulties are very sensitive to white-light
spectrum wavelengths, which overstimulate certain cells in the retina, resulting
in incorrect signals being sent to the brain. She found that by placing different-
colored overlays on printed pages, light sensitivity and perceptual distortions
were reduced. These colors were then applied as a tint on glasses. There is no
strong empirical research to support the use of Irlen lenses as an autism-specific
therapy; however, colored overlays on printed matter and tinted glasses have
been shown to be helpful for a number of schoolchildren. There is anecdotal
evidence that some people with ASD have light sensitivity, and many have
reported a major difference in their sensory processing when wearing tinted
glasses.
RESOURCES
irlen.com

Reading by the Colors by Helen Irlen
Intensive Teaching Approaches
Here are two intensive teaching approaches. Applied Behavior Analysis works
on specific skills to improve a person’s level of functioning. In DIR/Floortime,
mastering emotional milestones is considered important before working on skills
the person needs to learn. Other educational strategies are also useful and some
are listed below or in Chapter 7.
Applied Behavior Analysis (ABA)
ABA has been used for many years to successfully teach individuals of varying
abilities, and can be used to teach in all skill areas, including academic, self-help
skills, speech and language, and socially appropriate behavior. Specific skills are
taught by breaking them into small steps, teaching each step one at a time,
building on the previous one. Different methods are used to help the child learn,
such as prompting (helping the child by guiding him through the desired
response), shaping, and rewarding (for correct responses).
B. F. Skinner is the grandfather of ABA, thanks to his study of “operant
conditioning” and his book The Behavior of Organisms, published in 1938. ABA
is based on the theory that all learned behaviors have an antecedent (what
happened before the behavior was exhibited) and a consequence (what happened
after the behavior was exhibited) and that all such behavior is shaped by the
consequences of our actions, meaning that we are motivated by the consequence
to repeat that behavior. For example, most adults work because they are
rewarded by a wage or salary. If they stopped receiving that wage, they would
stop working.
FOOD FOR THOUGHT
DIR/Floortime
BY DR. JOSHUA FEDER

Developmental individual differences relationship-based intervention (DIR/Floortime)
is, like applied behavioral analysis (ABA), an approach to evidenced-based practice
that is used for a variety of purposes and, like ABA, has been used extensively for
helping people with autism and related challenges learn to relate, communicate, and
learn.
ABA focuses on looking at the antecedents and consequences of behavior,
working toward compliance, knowledge, and skills. By contrast, DIR/Floortime
supports caregivers (parents, teachers, others) to develop trusting relationships with
a person with challenges, through which the person can become more able to
communicate, relate, and learn. As part of this process, we look at the person’s
abilities and challenges to being regulated, such as sensory, motor, and cognitive
difficulties, and use that understanding to help the person be more regulated with us,
in a widening range of settings, and to interact with us in a flow of interaction. The
interaction, as with anyone, is what helps the person learn to be heard, to problem
solve, and to learn.
DIR/Floortime works from the person’s desires and ideas to build these abilities,
and so there is internal initiation and motivation to learn and integrate new skills and
information. Although less widely known, research on autism intervention supports
the aims of DIR/Floortime as evidenced-based practice. DIR and ABA can be
complementary or used separately. Families should have information on a range of
interventions so that they can make informed consent decisions about what might be
best for them.
Dr. Joshua Feder is director of research at the Graduate School of the
Interdisciplinary Council on Developmental and Learning Disorders, voluntary
associate professor at UCSD School of Medicine, and medical director at SymPlay,
teaching, advocating, and developing technology to support relationship-based
interventions (joshuafedermd.com).
Some of the terms used in ABA include:
Task analysis. This consists of analyzing a skill or task that needs to be
taught, by identifying each step of the skill, and which steps the person
needs to learn. For example, if teaching someone at home how to set the
table, you would analyze the whole sequence: walking to the cupboard,
opening the cupboard with the right hand, picking up a plate with the left
hand, closing the cupboard with the right hand, walking to the table, and so
on.
Discrete trial teaching (DTT). This is a method of teaching that is very
systematic and consists of the teacher’s presentation or request, the child’s
response, and the consequence to that response (i.e., a reward if correct); a

short pause, and then the next trial. Each trial is “discrete”—that is to say,
separate—so it is clear what is being requested of the child, and what is
being rewarded.
The Lovaas method. This is an intensive ABA program, aimed at preschool
children, developed by Dr. O. Ivar Lovaas at the UCLA Young Autism
Project. In 1987 Lovaas published a study that showed dramatic results on
nineteen children with autism who had received intensive ABA therapy:
The average gain in IQ was twenty points, and 47 percent of the children
(nine of them) completed first grade in a mainstream class. In 1993, eight of
the nine were still enrolled in mainstream classes and had lost none of their
skills.
Verbal behavior therapy. This is ABA therapy as it pertains to language
behavior and is based on Skinner’s behavioral analysis of language.
Errorless learning (no-mistake learning). When a new behavior is taught it
is important for the student to be successful from the beginning. Thus,
teachers prompt a successful behavior, phyically motoring the student
through if necessary. The prompts are gradually removed so that the
behavior will eventually occur simply in response to a request or some
other cue.
Care should be taken when choosing ABA providers. Check with your local
autism support group about the ones in your areas. For more information on
board-certified providers, go to the Behavior Analyst Certification Board’s
website (bacb.com).
RESOURCES
Teaching Developmentally Disabled Children: The ME Book by O. Ivar
Lovaas
A Work in Progress: Behavior Management Strategies and a Curriculum for
Intensive Behavioral Treatment of Autism by Ron Leaf, John McEachin,
and Jaisom D. Harsh
Crafting Connections: Contemporary Applied Behavior Analysis for
Enriching the Social Lives of Persons with Autism Spectrum Disorder by
Mitchell Taubman, Ron Leaf, and John McEachin

The Verbal Behavior Approach: How to Teach Children with Autism and
Related Disorders by Mary Barbera
DIR/Floortime
DIR/Floortime was developed by Dr. Stanley I. Greenspan as part of his
developmental approach to therapy. Parents and Floortime therapists help
children master the emotional milestones needed to develop a foundation for
learning. The approach is based on Greenspan’s belief that emotions give
meaning to our experiences, as well as a direction to our actions. Floortime seeks
to have the child develop a sense of pleasure in interacting and relating to others,
and is done through play, based on the child’s interests, and through creating an
increasingly larger circle of interaction between the child and an adult. Parents
and therapists work on four goals: encouraging attention and intimacy, two-way
communication, encouraging the expression and use of ideas and feelings, and
logical thought. This method is often used as the play component for children
who are in ABA programs.
RESOURCES
The Interdisciplinary Council on Developmental and Learning Disorders:
icdl.com
Profectum: profectum.org
stanleygreenspan.com
Engaging Autism: Using the Floortime Approach to Help Children Relate,
Communicate, and Think by Stanley I. Greenspan and Serena Wieder
Visual/Spatial Portals to Thinking, Feeling, and Movement by Serena
Wieder, PhD, and Harry Wachs, OD
Speech and Communication
Communication is one of the most basic skills that we have and need. We hope
that all children will learn to speak. However, not all children with autism
develop speech early on.

Speech therapy can be very helpful and is necessary if you have a child who
is behind in his language development. If your child has delays or is not
speaking, it is important to get an assessment and begin therapy with a qualified
and experienced speech and language pathologist. Check with other parents in
your area, or use this listing to find a professional near you: speech-therapy-
information-and-resources.com.
FOOD FOR THOUGHT
Facilitated Communication and Supported Typing
BY DARLENE HANSON, MA, CCC
Some children have a hard time developing speech. It’s important to offer alternative
ways of communicating, which research shows actually can help speech develop.
One method is facilitated communication training (FCT), which is a strategy that
provides physical, communicative, and emotional support to the individual as he or
she communicates. The strategy is described through what we know about praxis or
motor planning, memory, language development, social communication,
augmentative communication (use of alternate modes of communication), and
natural supports.
Many individuals who require the support described in FCT are able to
demonstrate literacy skills such as understanding print, word formation, and written
language. Some who use FCT use it to communicate more reliably, and consistently
access the use of icon-based communication, such as with line drawings or photos.
Others may use FCT or supported typing to communicate using a keyboard. The
identification of the need for support does not mean the person is literate. It does
mean the person can communicate more efficiently with support.
Those using the strategy of FCT according to the “Standards of Best Practice” do
so using the least to most hierarchy of support, for example from the wrist to light
touch on elbow to shoulder to no support. Therefore, the least amount of support
should be provided for the most communication. It is also recommended that those
who use FCT develop and use more independent communication to meet as many of
their communicative needs as possible. This can be in the form of limited speech,
communication books with line drawings, sign language, or other systems. The
individuals are also encouraged to develop a reliable means of communication
without the need of support. These are goals, and independence is a process.
The efficacy of the FCT strategy is found in both qualitative and quantitative
research (see
soe.syr.edu/centers_institutes/institute_communication_inclusion/Research/default.aspx).
Many bodies of research attempt to prove the efficacy through “blind tests” and
“double-blind” tests. Other researchers have chosen to look at the use of the strategy
in more natural and purposeful moments. The strategy itself dates back to the 1970s
when Rosemary Crossley began documenting the use of support for individuals with
severe communication needs in Australia. In 2000, the Facilitated Communication

Institute at Syracuse University published “Standards of Best Practice for Facilitated
Communication.”
Providing a person who does not have efficient use of their speech with a way to
communicate is important. When using augmentative communication, some people
need support to do so. The provision of support using best practices and
augmentative communication can open doors to those without efficient
communication.
Darlene Hanson, MA, CCC, director of communication services, WAPADH, is a
speech and language specialist with an expertise in working with individuals with
severe communication impairments, and has been working in this field for almost
thirty years. Her work focuses on bringing alternative modes of communication to
those who do not use speech to communicate effectively. She is recognized as a
Master Trainer in Facilitated Communication, has participated in the writing of the
“Standards of Best Practice for Facilitated Communication” from Syracuse University,
and has coauthored research on authorship for Facilitated Communication. More
about Darlene Hanson at wapadh.org.
Some children develop speech later with the help of speech therapy.
However, there are still many children who have difficulty using speech. It’s
important to realize that if your child does not have an appropriate way to
communicate, he will communicate with his behaviors—many of them
inappropriate. It can be very frustrating for a child or teen who has no way of
communicating. Even if the goal for your child is to use his voice to
communicate, research shows that using alternative and augmentative forms of
communication (AAC) helps speech develop.
Some alternative and augmentative forms of communication include sign
language and using devices specifically designed for communication purposes.
There are many apps that have been developed for tablets and smartphones, such
as the iPad and iPhone. AAC devices are much more costly than the iPad, but
they may be covered by insurance.
For information on AAC devices, go to
asha.org/public/speech/disorders/AAC.
New communication apps are being created all the time, and a speech and
language pathologist who is experienced in working with students with severe
communication challenges should be able to advise you. For example, there is
Proloquo2Go, which enables a child to create sentences with picture icons or
words (much like PECS, see page 121) or to type with voice output. There are
other apps for those who type that provide voice output such as Assistive Chat.

Check with other parents and educators on what is currently available.
Some other alternative methods of alternative communication are listed
below.
Supported Typing/Facilitated Communication (FC)
FC is a form of AAC in which people with disabilities and communication
impairments express themselves by pointing (e.g., at pictures, letters, or objects)
or, more commonly, by typing (e.g., with a keyboard). A communication partner
may provide needed supports, including emotional encouragement,
communication supports, and a variety of physical supports (e.g., monitoring to
make sure the person looks at the keyboard and checks for typographical errors)
to slow and stabilize the person’s movement, to inhibit impulsive pointing, or to
spur the person to initiate pointing; the facilitator should never move or lead the
person.
It often is referred to as facilitated communication training (FCT) because
the goal is independent typing, nearly independent typing (e.g., a hand on the
shoulder or intermittent touch), or a combination of speaking with typing—some
individuals have developed the ability to read text aloud and/or to speak before
and as they are typing. Typing to communicate promotes access to social
interaction, academics, and participation in inclusive schools and communities.
To read the research on FCT, go to
soe.syr.edu/centers_institutes/institute_communication_inclusion/Research/default.aspx.
Rapid Prompting Method (RPM)
RPM is a method used for teaching academics by eliciting responses through
intensive verbal, auditory, visual, and/or tactile prompts. RPM aims to increase
students’ interest, confidence, and self-esteem. Prompting is intended to keep
students focused while allowing students to be successful. This is a very low-
tech method requiring only paper and pencil to begin with. A lesson might begin
with a teacher’s simple statement, followed by a question about what was just
said. Next, the teacher writes possible answers and spells the choices aloud.
Students learn to select answers by picking up choices and eventually pointing to
letters on an alphabet chart or keyboard to spell answers. RPM was developed by
Soma Mukhopadhyay (see page 131). For more information, visit Helping

Autism Through Learning and Outreach (HALO) at halo-soma.org.
Picture Exchange Communication System (PECS)
PECS is a practical communication system that allows a person to express his
needs and desires without being prompted by another person, by using pictures
or a series of pictures to form a sentence. The child first learns to communicate
by handing someone a picture of the object he wants, then sentence strips, and so
on. Not only does this facilitate communication, it motivates the child to interact
with others. PECS is easy to incorporate into any existing program, and does not
require expensive materials. Behaviorally based instructional techniques are
used to implement the program (such as prompting, shaping, fading, and so on).
Basic concepts such as numbers, colors, and reading can be taught using PECS,
and the picture icons can be used for visual schedules to help the child.
Codeveloped by Andy Bondy and Lori Frost, this method helps relieve the
frustration of those unable to speak and does not inhibit a child’s ability to
acquire and use speech. Many children who began with PECS have gone on to
develop verbal language.
For more information, visit Pyramid Educational Consultants at pecs.com.
Social Relationships
Social relationships are important for all people, yet are difficult for many on the
autism spectrum to develop naturally. Developing relationships entails having
social skills, knowing about expected yet often unstated rules of behavior, and
social boundaries. Below are a different ways of teaching what children with
ASD need to learn about relationships.
Social Skills Training
Social skills are a difficult area and need to be taught for those with ASD. There
are different methods of teaching social skills. Here are some of them:
Social stories. This method promotes desired social behavior by describing
(through the written word) social situations and appropriate social responses.

Developed by Carol Gray, social stories may be applied to a wide variety of
social situations and are created with the learner, who takes an active role in
developing the story.
Social stories usually have descriptive sentences about the setting,
characters, and their feelings and thoughts, and give direction in regard to the
appropriate responses and behaviors. Comic strip conversations are illustrations
of conversations that show what people say and do, as well as emphasize what
people may be thinking. Social stories and comic strip conversations can be
adapted to many functioning levels and situations, and anyone can learn to create
them. They are particularly useful for learning how to deal with unstructured
time, such as recess and lunchtime.
RESOURCES
Comic Strip Conversations: Colorful Illustrated Interactions with Students
with Autism and Related Disorders by Carol Gray
The New Social Story Book by Carol Gray
The Original Social Story Book by Carol Gray
Social skills groups. These teach specific social skills by breaking them
down and providing practice in a “safe” environment. Depending on the age or
grade level, different social skills are emphasized, including making
conversation; taking turns; joining a group; dealing with bullying; friendship;
and understanding facial expressions. Social skills training usually takes place in
groups of four to six children and is usually beneficial for the more able person
with ASD. Social skills development is one of the biggest challenges children
with ASD face, and a well-structured social skills group can be beneficial. For
more information, see udel.edu/bkirby/asperger/social.html.
Social thinking. “Social thinking” is a term that was coined more than
fifteen years ago by Michelle Garcia Winner, a speech pathologist who
developed the related approach for her students with high-functioning autism
and related challenges in San Jose, California. This approach is different from
teaching social skills because it teaches the specific needed thinking strategies
that occur before social interaction and communication take place. Social
thinking refers to the thinking we do about people, which affects how we
behave, and then how people respond to us, which then affects our own
emotions.

RESOURCES
Thinking About YOU Thinking About ME by Michelle Garcia Winner
socialthinking.com
Hidden Curriculum
The hidden curriculum refers to the unstated and unofficial behaviors, values,
and rules that are “assumed knowledge” that people generally learn by osmosis.
These can include expectations about how to act in public (e.g., standing in line,
not picking your nose), messages about social hierarchies, and so on. Individuals
with autism don’t usually learn these naturally and need to be taught these
expected yet assumed rules of behavior.
RESOURCES
The Hidden Curriculum: Practical Solutions for Understanding Unstated
Rules in Social Situations by Brenda Smith Myles, Melissa L. Trautman,
and Ronda L. Schelvan
OTHER BOOKS ABOUT SOCIAL SKILLS TRAINING
Teaching Children with Autism to Mindread: A Practical Guide for Teachers
and Parents by Patricia Howlin and Simon Baron-Cohen
Autism: A Social Skills Approach for Children and Adolescents by Maureen
Aarons and Tessa Gittens
Incorporating Social Goals in the Classroom: A Guide for Teachers and
Parents of Children with High-Functioning Autism and Asperger
Syndrome by Rebecca A. Moyes and Susan J. Moreno
The Autism Social Skills Picture Book by Jed E. Baker
Social Skills Training for Children and Adolescents with Asperger Syndrome
and Social-Communications Problems by Jed E. Baker
Do-Watch-Listen-Say: Social and Communication Intervention for Children
with Autism by Kathleen Ann Quill

FOOD FOR THOUGHT
Tips from Temple Grandin
Temple Grandin is a woman with autism who has a successful international career
designing livestock equipment. Temple has a PhD in animal science from the
University of Illinois and is now an associate professor of animal science at Colorado
State University. She credits early intervention, starting at age two and a half, for her
recovery from autism.
Temple has written several books, including Thinking in Pictures and The Autistic
Brain, as well as many informative articles, which can be found on the website of the
Center for the Study of Autism (CSA) at autism.org.
Over two phone conversations, Temple shared with me the following important
information about what can help people with ASD learn:
THERAPIES, TREATMENTS, AND INTERVENTIONS
As every person has different areas of strengths and challenges, what works for one
person may not work for the next. For each person, finding the right balance of
strategies is important. Donna Williams, who has many sensory challenges, uses a
combination of strategies to offset the difficulties she encounters. She wears Irlen
lenses, is on a gluten-and casein-free diet, and is now taking a tiny daily dose of
Risperdol (a quarter of a milligram a day), an antipsychotic. Temple takes Norpramin,
an antidepressant, and still uses the “squeeze machine” she invented years ago.
Temple designed and built this machine as a teenager after observing the calming
effect a squeeze chute had on animals at a relative’s farm. This was in response to
her need for deep pressure, under her control, that she craved and that helped her
cope with anxiety.
EDUCATIONAL STRATEGIES
Temple has accumulated much information and experience over the years about
what is effective in helping others learn (see page 236). The most important point she
makes is that intensive and early intervention with the right kind of teacher is crucial,
more important than the type of program.
MEDICATION
Temple reports that medications have helped her tremendously over the years. In her
book Thinking in Pictures, she includes a chapter on the different kinds of
medications and how they can be helpful. She has recently reviewed this chapter and
found the information still to be valid, although more recent developments, such as
the newer atypical antipsychotic medications, are not listed. When treating with
medications it is important to look at the benefits of the medication versus the risks—
especially with children, whose bodies are still not fully developed—and to start with
tiny doses. Temple says that a good rule of thumb in deciding whether or not to
continue using the medication is to look at the “wow” factor. If a child is put on a

medication and there is an obvious dramatic, positive change in him (e.g., a
nonverbal child can now speak), then the benefit may outweigh the risks.
For example, Temple told me that she once attended a conference with Donna
Williams and was amazed at how Donna was able to tolerate sitting and having
dinner with her and other people in a noisy environment. If Donna lapses from her
gluten-and casein-free diet now, the effects are not so severe. This way she can
travel and eat in restaurants. She attributed her improvement to the tiny amount of
Risperdol she takes daily.
However, it is important to find a doctor who is knowledgeable about autism and
medications, and to try medications only under the guidance of such a person. Ask
your local autism chapter for names of doctors who are familiar with medications,
doses, and the effects on people with ASD, as again, this treatment needs to be
individualized for each person.
Other Therapies
Listed here are some adjunct therapies, usually used to target a particular skill
area or as part of a wider program, and potentially extremely useful depending
on the individual’s needs. Again, it is important that the therapist be
knowledgeable and experienced with ASD.
Occupational Therapy
Depending on the age, ability, and need of the individual, occupational therapists
provide different services. Their aim is to help the person meet goals in areas of
everyday life that are important to them, such as self-care, work, and leisure.
Assessments are carried out initially to discover the needs of the individual and
provide support to learn skills in those areas. Some therapists are specifically
trained in sensory integration. For more information, visit the American
Occupational Therapy Association at aota.org.
Music Therapy
Most people respond favorably to music, including people with ASD. Music is
motivating and enjoyable. In music therapy, goals are tailored to the needs of
each individual and may include increasing nonverbal interaction, such as turn-
taking and eye contact; exploring and expressing feelings; and being creative

and spontaneous. Some parents have reported that their children began to learn
to speak as a result of being taught nursery rhymes and other songs. Research
shows that there are some favorable benefits to music therapy. For more
information, visit the American Music Therapy Association at musictherapy.org.
Neurologic Music Therapy (NMT)
NMT is a type of music therapy that focuses specifically on music and rhythm’s
physical effect on the brain and brain connections (neuropathways). Specific
research-based techniques and NMT interventions are applied in a consistent
manner based on the therapeutic goal of the client. Neurologic music therapists
complete additional training beyond standard music therapy certification in order
to maintain their NMT designation. For more information on NMT, go to
colostate.edu/dept/cbrm/academymissionstatement.html.
FOOD FOR THOUGHT
Beam Me Up!
It’s a Wednesday morning and I am volunteering at the jog-a-thon at my daughter’s
school. As we await the start of this event, other mothers are standing around talking.
I approach a few I know and hear a bit of their conversation: “I hear Pasqual got
voted off.” “Oh, no, he was my favorite!” “Mine, too.” I move in and ask, “What are
you talking about?” They look at me as if I have just landed from another galaxy, and
say, “Survivor!” I say, “Oh, you have time to watch that?” and as they look at me, one
replies, “We make time, the whole family!”
They continue to talk about Survivor and I drift away. I am left with the usual
feeling of being an alien on another planet. Is it because I have a son who is severely
handicapped by his autism, leaving me with a lack of time for trivial time-fillers, that I
don’t fit in?
It’s hard to feel as if you fit in when you don’t have the same points of reference.
The parents huddled around, waiting to pick their children up after school, talk about
their daughter’s latest piano recital, her high scores on her SATs, or how their son is
representing the school at the county science fair. Somehow, the highlights of my
fifteen-year-old son’s week (he sat in his mainstream class and participated
appropriately for a one-hour stretch, and hasn’t wet the bed once) don’t seem like the
kind of information that I can just slip into the conversation and share as an
accomplishment.
What are my time-fillers? Filling out paperwork to explain why I still need respite
and other services; preparing for my son’s annual review at school and documenting
why he needs occupational therapy and ABA; explaining to the medical insurance

company why my son needs a certain treatment; attempting to keep him from
“redecorating” the family room; making picture icons; trying to reach the neurologist
about seizure medication; reading up on the latest research; making my son clean up
the mess he made when he did redecorate; sending letters to politicians; attending
voluntary board meetings; taking my son for a swim or a run because he is too hyper;
cleaning spots off the rug, the couch, and the walls you really don’t want to know
about; and oh yeah—trying to earn a living.
I don’t share the same cultural points of reference as most of the other
inhabitants of this suburb. My reference points are those of autism: Talk to me about
ABA, OT, MMR, IEP, NAS, GFCF, DTT, ASD; I’m sorry, I don’t know how to talk
reality TV.
Assistive Technology
Broadly, assistive technology means any item, piece of equipment, or product
system that is used to increase, maintain, or improve the functional capabilities
of a person. It can be a high-technology item such as a Lightwriter to help
someone type what they cannot say verbally, or an iPad with voice output apps.
Or it can be low technology such as picture icons used to communicate
something a person wants, or larger letters on keyboard keys. Check with
knowledgeable speech therapists and your school’s assistive technology expert
to see what items they have found useful, as well as with the latest research and
computer specialists to see what is new.
Some children with autism can easily use computer programs or apps and
learn by using them. Others struggle with the sensory issues of too much to look
at and too much to listen to. Some programs have been designed for students
with autism in mind. This area is in constant evolution as advances in technology
continue. Although not ASD-specific, here are good places to get information:
RESOURCES
The Alliance for Technology Access (ATA), a network of community-based
centers, vendors, and professionals: ataccess.org
TCI teachers, speech therapists, and staff at the Children’s Institute provide
feedback and reviews of assistive technology and iPod, iPad, and iPhone
apps that are used to support their students: tcischool.org/techtips
A book about apps for the iPhone and iPad: Apps for Autism: An Essential
Guide to Over 200 Effective Apps for Improving Communication,

Behavior, Social Skills, and More! by Lois Jean Brady
NEVER UNDERESTIMATE THE POWER OF A PARENT
Tito and Soma
Tito Rajarshi Mukhopadhyay is a yound adult from India who is severely autistic and
writes eloquently. His mother, Soma, raised him and educated him with little help
from anyone else. When he was two and a half, he was diagnosed as autistic and
she was told to keep him busy. Soma did just that. She read to him from textbooks on
subjects ranging from science to literature when she wasn’t engaged in teaching him
other skills. Any physical activity, such as riding a bicycle, she had to teach him by
physically motoring his body through the motions. She taught him to write by
attaching a pencil to his fingers with a rubber band as he was unable to hold it on his
own. She taught him to point to numbers and letters, also by physically prompting
him through the tasks. By age six, he was able to write independently.
In December 1999, Soma took Tito to England, to Elliot House (the Centre for
Social and Communication Disorders run by the National Autistic Society), where he
was observed and assessed by Drs. Lorna Wing, Beate Hermelin, and Judith Gould,
among others. Tito at the time was eleven, yet reached the level of a nineteen-year-
old on the British Picture Vocabulary Scale administered by Dr. Gould. His story, from
India to the UK and back home again, is the subject of a BBC program, Inside Story:
Tito’s Story. The National Autistic Society subsequently published a book written by
Tito titled Beyond the Silence: My Life, the World, and Autism. The revised U.S.
edition of Tito’s book, The Mind Tree, provides valuable insight into the life and mind
of persons with little to no expressive language.
In autumn 2001, the Cure Autism Now Foundation (CAN) invited Soma and Tito
to move to Los Angeles so that Soma could try her teaching techniques on U.S.
students with autism. In addition, Tito graciously consented to undergo extensive
testing by experts, such as Dr. Michael Merzenich, a neuroscientist at the University
of California at San Francisco Medical School. Merzenich’s tests helped validate and
clarify Tito’s written experiences, while shedding light on the brain function of people
with severe autism. For example, in perception testing where lights are flashed on a
computer screen at the same time as the sound of beeps is issued, most people can
sense the beep and the light at the same time. However, Tito cannot see the light on
a computer screen unless it appears a full three seconds after the beeps. He
explains that he can use only one sense at a time, and has chosen to use his ears.
This is in marked contrast to the experience of Temple Grandin, a professor at
Colorado State University who holds a doctorate in animal science and has autism.
Dr. Grandin explains that she thinks totally in pictures, that thinking in language and
words is incomprehensible to her, and that she has difficulty with her ultrasensitive
hearing because she cannot tune out unwanted noise the way most of us can.
Soma worked for two years with a class of severely autistic children using the
method she developed with Tito, which she calls the Rapid Prompting Method
(RPM). Soma teaches academics by simultaneously stimulating auditory, visual, and
kinesthetic channels. She elicits responses from children at a rapid pace, which
keeps students focused on the lesson at hand.

Soma is now educational director of the nonprofit organization Helping Autism
Through Learning and Outreach (HALO), based in Austin, Texas. HALO provides
individual instruction for students and training for parents and professionals
interested in RPM. Soma has adapted her method to different learning styles.
Neuroscientists such as Dr. Merzenich are hopeful that this teaching method will
help many.

6
Family Life
Family life can be a test of love and resilience, so taking good notes and
understanding each other’s needs and wants are vital to the success and survival
of any marriage. After children arrive, there is a balancing act between caring
for their needs and putting time and effort into the maintenance and growth of
the marriage. This rite of passage in the development of family life is challenged
still further by disability or chronic illness.
—ROBERT A. NASEEF, Special Children, Challenged Parents
I was raised in a French Catholic family, one of six children. As my parents had
emigrated to the United States from France, we had no extended family, but we
were very close. We did everything together: ate dinner as a family every night,
rode our bikes, played tennis, watched TV (the few hours a week we were
allowed), went to church, and socialized with other families. We had very little
time on our own and were not encouraged to join clubs that would take us away
from our family activities.
So I had always expected that when I had a family, though it would be much
smaller, it would be the same kind of close-knit family life with shared activities.
This was important to me. However, having two children who are basically
living on separate planets (one is severely autistic, with poor motor skills; the
other is very social and athletically gifted) makes it tough to have the kind of
family life I grew up with. I had to learn to let go of my expectations, change my
perception of what family life meant, and figure out what we could still do
together as a family and what we would have to do separately. We have had to
create our own version of family life. But we are still a family; we just do things
differently.

Autism Spectrum Disorder and the Family
Having a child with ASD has a major impact on the family. Besides the stress
associated with bringing up a child who needs more attention and care, children
with autism are not as social as other children and do not reach out to parents in
the same way that other children do. This lack of spontaneous signs of affection
from one’s own child is very difficult for a parent.
Often families tend to isolate themselves either because of concern over their
child’s socially inappropriate behaviors or from fear of being embarrassed by
some of the child’s behaviors or because of the extreme fatigue most parents of
children with ASD suffer from. Families stop doing what they did before the
ASD was very apparent. Single-parent families find themselves alone with their
hands full and no free time to keep up any kind of social life, increasing their
isolation. Being a single parent, adoptive parent, stepparent, foster parent, or
grandparent raising a child with ASD adds even more difficulties to an already
precarious situation.
A marriage or relationship with a significant other can deteriorate due to
added stress, fatigue, and differences of opinion on how to handle certain
situations. Often one or both parents are having difficulties coming to terms with
having this child and are on different parts of the grief cycle. Add to that the
searching for support and trying to get an appropriate education for the child,
and it is easy to see how many couples come to call it quits.
Siblings can suffer from being raised in a family with a child who has ASD.
Not only do they have a sibling who is hard to understand, has limited interests,
and is not social; they also have to deal with some pretty wild behaviors. And
they also feel the stress their parents are under, as well as the fact that inevitably
more of the parents’ attention is taken up by the sibling with ASD. However,
research indicates that there are also positive aspects of having a sibling on the
spectrum.
Extended family members such as grandparents also have a difficult time in
dealing with ASD. Some refuse to face the facts, others don’t know what to say
or what to do. Again, as the parents, it is up to you to decide when and what
information you want to share. Much depends on the type of relationship you
have with your relatives and how close you are to them.
It is difficult bringing up a child with ASD. But first and foremost you are
raising a child, not a disability. No matter how bad the behavior or situation,
there is always a solution. And mainly it is the parents’ attitude that will make

the biggest difference. In this section, practical suggestions on family life are
offered.
Family Life with Children with ASD
The sooner you realize that your family life will not resemble the Waltons’, the
better off you will be. Take heart from knowing that your family life would
probably never have resembled that perfect ideal, and if it had, you would have
been bored out of your skull. Think of the Addams family and how much more
fun they seemed to be having regardless of the daily household disasters.
FOOD FOR THOUGHT
Managing Your Energy
BY MARSHA MARKLE
As parents of special needs children, we require plenty of energy to meet the series
of unique challenges we may face. Self-care becomes an essential part of our
healthy functioning. Without appropriate self-care we risk becoming physically
exhausted, emotionally isolated, mentally scattered, and spiritually depleted.
In order to manage our lives and have a reserve of resourcefulness to use in
service of our mission, we must learn to give ourselves intermittent renewal.
Research reveals that when you expend a lot of energy you must institute habits that
replenish that energy. You need to put yourself on the front burner for at least fifteen
minutes a day and increase that time or frequency as you develop these new habits.
Don’t wait for that once-a-year vacation. If you feel overwhelmed at the thought of
fitting self-care into your day, then that is a sure sign that you need to do just that.
If you want to live your life by design, not default, plan ahead to give yourself
renewal in all the energy resource domains: physical, mental, emotional, and
spiritual. Start by identifying your core values. Check your daily activities to see how
much time and energy you are spending within those values and how much is
squandered on nonessentials. Imagine what you can say “no” to so that you can
begin to make the time and energy for self-care. What is zapping your energy that
you might be able to eliminate?
What gives you healthy energy that you can add to your lifestyle? Get the help of

your partner, family, and friends to get these needs met. If necessary, find a personal
coach to assist you in this endeavor.
You’ll have more energy, power, patience, and sustainability when you can take
care of your needs as well as those of your loved ones. Without self-care and
managed energy you will be at risk for burnout, irritability, and feeling the effect of
things outside your control. Exercise your self-care muscles to create a healthy
balance for yourself.
Marsha Markle, MA Communications, MA Psychology, EdS School Psychology, is a
special education advocate with Pacific Coast Advocates in San Diego County and is
an adjunct faculty member at National University in the special education
department. Marsha was a school psychologist for twenty-two years and is the parent
of an adult son on the spectrum.
Life for your family will never be boring from this point on. It may get
monotonous, but it will not be boring. Start buying rubber gloves, cleaning
liquids, disinfectants, and carpet stain removers in wholesale quantity, as you
will be using them often. I wonder if the sales figures for cleaning materials rise
at the same rate as ASD diagnoses. But I digress.
It is not easy striking a balance between family life and all that is inherent to
having a child with ASD. It is true that you probably will not have the family life
you envisioned. But many people who do not have a child with ASD do not
either. People get divorced, lose a partner or a child. They grieve, but then they
move on and rebuild another kind of family life. And families with a child with
ASD need to do that as well. Grieve about the loss of your expectation for the
family life you envisioned, and then start building the one you will have. You
owe it to the rest of the family. It will be hard work, but you can do it.
You may find some of the books listed in the Resources section helpful to
you. To start with, here are some basic guidelines to keep in mind:
Do not isolate yourself and your child. Primarily, parents must take care
that the family does not become isolated. This is vitally important for all
members of your family. Now, more than ever, you need to be surrounded by
relatives and friends, and so does everyone in your family. Isolation occurs
because you are too tired to go out, you cannot handle your child in public, or
you are embarrassed by your child’s behaviors. People soon stop inviting you
over, either because you have previously turned down invitations from them or
because of your child’s behavior or because you are obsessed about ASD and
that is all you can talk about. You stop inviting people over because you are too

exhausted to play hostess and you are embarrassed by your child’s behaviors. Do
not be one of those people who says, “I remember when I used to have a social
life. Look, I even have pictures to prove it.”
Get over caring what other people think. Do not be intimidated by looks
and remarks when you go out in public, and do not feel you have to justify your
actions to family members and friends. If you are too embarrassed to take your
child out in public, then you need to analyze why you feel that way. If it is
because of your child’s behaviors, and they are very disruptive or unsafe, then
you need to work on those behaviors. If it is because you feel uncomfortable that
your child appears “odd,” then I suggest you get over it. Your child is here to
stay, and he needs your support. And the general public needs to be reminded
that none of us is perfect.
Get your child’s worst behaviors under control. This is never easy and
can sometimes be extremely difficult. However, this child is your responsibility
now. You need to help him. First you need to try to understand what is causing
the behavior. If you can eliminate the cause, that’s great. If not, you need to try
to get disruptive behaviors under control. It is not fair to the rest of the family,
nor will it make you friends out in the community. There are positive behavior
techniques that can be used to decrease and eventually eliminate the worst
behaviors, and with practice a parent can learn how to use them. Your
pediatrician or local autism support groups should be able to provide you with a
professional who can help you. If not, there are various books you can consult
that will explain in simple terms what to do. They are listed in the Resources
section at the end of this book.
Keep your sense of humor and take time to laugh. Surround yourself with
uplifting media. No matter how bad things are, you can and will make it through
today. Play good upbeat music, not the tunes that make you feel even more
depressed. If you have ten minutes to read or watch TV, make sure it is
something amusing. Don’t waste it on reading or watching the news. Usually the
news is depressing, and you can’t do anything about it. Keep entertaining videos
around the house, as well as light reading. Humor helps, even if it is gallows
humor. You may not be able to control the situation you are in or solve your
problems, but keeping your mood uplifted will help you have a more positive
frame of mind.
Do what you can to stay healthy. Take care of your physical health. Try to
eat properly, catch up on sleep when you can, and exercise regularly. Even just a
twenty-minute walk three times a week will keep your body healthier and will

make you feel better. Your physical health affects your mental health, which in
turns affects the whole family.
Remember that you are only human. You may try to act like a
superhuman and do the impossible. That is okay, if you are feeling up to it.
However, watch out for burnout. Revert to acting human and do not feel guilty
for only doing what you can. Think of all you have accomplished, not what you
wish you had done.
How to Continue Doing the Family Activities You Enjoy
Most parents think that family activities should be done as a unit. Parents of a
child with ASD may try to include the child in all family outings, hesitating to
leave him at home while everyone else is out enjoying themselves. Others may
rarely take their child out in public. What is needed is a balance. Pick activities
to share as a family unit that will be enjoyable to all, and schedule other
activities or family outings that can be done separately with individual members
of the family.
FOOD FOR THOUGHT
Learning to Share
Having to share my parents with two older brothers was the main thing. I see too
many families where the needs of the autistic person run the day. There has to be a
balance, between that very needy person and needs of parents and siblings. I don’t
care how needy he is, he has to learn that he is not the sun with the rest of the world
as planets revolving around his every tantrum. I was very lucky to have two older
brothers and two parents whose egos weren’t totally tied up in what I thought of them
or how I succeeded.
—Jerry and Mary Newport, Autism-Asperger’s and Sexuality

Parents need to look at the activities they enjoyed doing before and what
they would like to continue doing now. See how you can adapt them for the
home life you have now. Analyze whether it is easier to change the activity or to
change your child’s behaviors or to drop the activity. You will probably have to
do a bit of all.
The following basic suggestions will be helpful to some of you, especially
parents of younger children and children severely impaired by ASD. These
strategies are included here for those who have no supervised behavior program
and need to teach their child some basic skills. If your child has a behavior
program, he is probably already learning these skills.
Teaching Your Child Basic Communication
The first skill your child should learn is how to communicate. Some children
with ASD are verbal and are able to communicate effectively; others may have
enough speech to at least get their basic needs met. Many have no speech
whatsoever, or had speech and then lost it.
Not being able to communicate is very frustrating and can lead to major
tantrums and disruptive behaviors. Teaching some basic communication skills
can alleviate a lot of this frustration. PECS is a wonderful system for helping
children to communicate (see pages 121–124). At the basic level it teaches the
child that by giving you a picture of an item that he wants, he will get that item.
Without professional help, you can teach your child to give you or point to
pictures that represent what he wants or needs. This will not inhibit him from
learning to speak and is a good practical starting point to help you at home.
For example, start by cutting out the labels of food or drink items your child
enjoys. When you first introduce this concept, have another person help you.
The first step is to pick a moment when you know he wants a particular item.
Make sure you have a picture of that item. Hold up the item, and have the other
person physically help the child to hand you the picture. In exchange you can
immediately give him the desired item. This will only work if he really wants
that item, and if he can’t reach it without your help. You can add more pictures,
perhaps laminate them, and put them somewhere easy for the child to find—
perhaps stuck to the refrigerator or on the kitchen table. You can keep adding
pictures so that he can request to go outside, have a ride in the car, watch TV,
listen to music.

For use on the iPad and iPhone, Proloquo2go is picture-based software that
can be used to communicate. It also has word processing and typing capabilities.
Teaching Your Child to Wait
Another skill your child will need to master to make home life easier is waiting.
At home, he needs to wait for someone to help him, he needs to wait for dinner,
he needs to wait to go out. In the community, he needs to learn to wait at the
doctor’s, wait at the supermarket checkout, line up to get on a bus or a plane.
Learning the concept of waiting (you will get what you want eventually) will
help to lessen the number of tantrums. Autismcollege.com has a free video
showing how to teach this necessary skill. It’s titled “Teaching the Skill of
Waiting: Autism Parenting Tip from Autism College.” You can find it on
YouTube.
Here is how to teach the skill. Make or find a picture that will represent
“waiting” to your child. We have used a simple line drawing of a person sitting
in a chair, with the face of a clock next to it. Write “waiting” clearly on the card.
Laminate the picture and place a piece of Velcro somewhere on it. Next, make
sure you have pictures of whatever items your child usually requests or wants
immediately (favorite food, toy, ride in the car), backed with Velcro, and a
seconds timer. The next time he requests an item put the relevant picture on the
Velcro on the waiting card, then turn the timer on for a few seconds. Say, “We
are waiting” or “Waiting” and point to the card. When the timer goes off,
immediately fulfill his request.
Some children need to start with a wait of only three seconds, and work up
from there. Some can start at ten seconds or more. Once your child has learned
to wait for those few seconds, add more. You know your child, so you will have
to gauge where to start. Eventually, he will understand that he will get what he
wants, it is only a matter of time.
Creating Schedules
Another helpful tried and trusted method is schedules. Posting pictures or words
about the day’s activities in the kitchen or by the front door can be helpful for a
child having difficulty making sense of the world around him. Knowing what
will happen and in what order is comforting. You must be sure to explain

verbally what the words and pictures mean, otherwise children who are auditory
learners may not make sense of the schedule. There are many apps that can help
for schedules on the go.
Scheduling also helps those who have sensory problems in some areas to get
ready for a not-so-pleasant onslaught of sensory input. For example, I have
noticed that if my son is forewarned that he will be visiting the dentist or the
hairdresser, he appears to have an easier time of it, as if he has prepared himself
mentally. If I have forgotten to put it on the schedule earlier in the day, and then
show him the picture just before leaving the house, he appears to be anxious and
unhappy, often refusing to get in the car, which he usually loves.
If your child is very young and home all day, you may find it helpful to
establish a routine of activities that will fill part of his day and use a schedule to
show what that routine is (eating, getting dressed, free play inside, napping, TV).
Being Consistent
For any behavior changes that you are trying to make with your child, it is
important that you follow through and be consistent, and that the other family
members do so as well. If you introduce a way to communicate and then do not
respond to his attempts to approach you, you will be doing your child a
disservice. If you teach him to wait, but do not give him the item he is waiting
for, he will not learn the concept, and will be even more confused.
Handling Family and Social Gatherings
Although it is true that it is harder to participate in family and social gatherings,
it can be done. Gatherings can be overwhelming, and attending with your child
requires a certain amount of preparation on both ends, depending on the type and
size of the gathering. This is a balancing act between making your child
comfortable, making the other guests and the host comfortable, and ensuring you
will be invited back.
Your relatives and good friends might not understand why your child acts
the way he does, why he won’t sit still, or why he is on a special diet. I wrote a
book called What Is Autism?: Understanding Life with Autism or Asperger’s as a
simple and short read that answers the most-asked questions about autism to help

educate those around a family with autism.
Here are some guidelines for handling family and social gatherings:
Prepare your relatives and friends for how your child might act and what it
means. For example, if your child runs immediately out of the room when
there are more than a few people, explain that it is not personal, but that
your child cannot tolerate noise because his hearing is oversensitive.
Make sure they understand that your child is not “misbehaving” but that
you will be keeping an eye on him and you are teaching him to control his
behaviors, but it takes time.
If there are breakable items sitting around, you may want to ask if you can
move them out of reach.
Ask which rooms or areas are “off-limits” and make sure you enforce that.
Just like a designated driver, you need a designated child watcher. If you are
going with another adult, decide who will be keeping an eye on your child,
and when.
If your child is on a particular diet, you will need to bring plenty of food
that she is fond of. Depending on how well you know the others and how
they may react, you might ask about not leaving certain foods out to munch
on, and bring something to share that all can enjoy.
Look at the traveling tips on page 147, and follow some of the ideas to
familiarize your child with what is going to happen and who he is going to
see, such as showing pictures and talking about who is going to be there
and the schedule of activities for the day. If you anticipate noise, make sure
you tell your child a few times in the days ahead. If you know certain
holiday music will be played, you can put some on at home every day for a
short while so the child can get accustomed to it.
Bring some familiar toys and favorite items to make the child feel
comfortable and more at home.
Faith, Organized Religions, and Spirituality

Many of us seasoned parents joke that over the years we have become more
religious: We pray our child will not have a toileting accident in public, we pray
they will behave themselves while we are visiting relatives or doing the family
shopping, we pray that we will have the strength to politely ignore the judgments
passed upon us and our “misbehaving” children.
All joking aside, faith has been helpful to parents and many on the spectrum.
Many parents find solace in religion, and often families find that their faith is
what keeps them going. Often, the place of worship becomes another support
group. Some provide religious instruction to children on the spectrum and
opportunities for inclusion and for their children to make friends.
Many parents find their place of worship embraces their child with special
needs, though this is not always the case. One would expect that, by the nature of
a religion’s spirituality and beliefs in love for fellow man, that families with
autism would find acceptance of their children. However, we all know that
ignorance knows no boundaries. Some families have had difficulty continuing to
attend services or, if they do, their child’s behaviors can be a challenge for the
other worshippers.
There are news reports from recent years of youths with autism being
banned from worship services due to unruly behavior, at least one even
involving a court case. On a personal note, my son, Jeremy, and I stopped
attending church services a few years ago because Jeremy no longer felt
welcomed there. At the time, no one reached out to ask why we were no longer
attending or why Jeremy was no longer participating in the young adult group.
Some families report that their children with autism seem particularly
spiritual and connected to God, and some adults do as well. There are a few
books on this topic, and they are listed in the Resources section of this book.
Some places of worship provide religious instruction to those with autism;
some do not. Luckily, there are now more resources to help. For information on
how to include children with autism in Christian and Jewish services, visit
autism-society.org/living-with-autism/family-issues/religion-and-autism.html.
Some of these tips may apply to other religions as well. An online search yields
blog posts on autism and various faiths posted by parents, which might also be
helpful.
Traveling and Going on Vacation as a Family

Traveling can be trying even at the best of times when you have small children.
Traveling with a child with ASD can be even more of a challenge. Airports and
train stations are areas that involve lots of waiting. Leaving the security of home
for a new place can be off-putting for a child with autism. How you prepare your
child depends on his age and how the ASD affects him. Some suggestions are
given here that you can adapt for your own child’s needs and level of ability.
Remember that the first time you use this he may not understand, but over time,
he will.
Teach your child the “waiting” skill if he does not have it.
Put up a monthly calendar and check off each day until it is time to go.
Bring the calendar with you and mark off the number of days in the new
place, always having the departure date indicated.
Put together a “travel book” of pictures (and/or words) of the means of
transport you are going to be using to travel (airplane, boat, train), who you
are going to see (relatives, friends), where you will sleep (hotel, Grandma’s
house), and what you will do or see at your destination (swimming, playing
outside, visiting monuments). Go over this with him as often as you like in
preparation for the trip. If your child prefers an actual book, a three-ring
binder works best, because you can add extra pages or insert the calendar
mentioned above for use on the trip. For those who have access to an iPad
or tablet, there are apps that can help you create schedules and books on
your tablet.
Put together a picture or word schedule of the actual journey to take with
you on your trip. Add extra pages to the travel book. If you are using a
binder, use Velcro to attach pictures or words in sequence. Add an empty
envelope to put the “done” pictures in when you have finished that step of
the journey. For example, if you are flying to Paris, start with a picture of
the taxi or car that will take you to the airport. When you are at the airport,
have him remove the taxi picture and put it in the envelope. Then have a
picture of the airport, followed by the “waiting” picture, and then the
airplane, and so on.
Think of your child’s daily routine and the items he likes or needs for it, and
bring them along to make him feel more at home. Bring whatever foods and

drinks will keep him happy on the trip.
Buy some small inexpensive toys that he can play with. If he only plays
with one favorite item, try to find a duplicate and see if you can “break it
in” before the trip. Do not wash any toys before you go, as your child may
find comfort in the “home” smell of his cherished item.
When staying in a hotel, it is a good idea to call ahead and ask for a quiet
room. You may wish to explain about your child’s behavior if there is a
good likelihood of him exhibiting it in the public part of the hotel. The
same with a friend or relative’s home. It can be a bit disconcerting for
everyone concerned if your older child takes his clothes off and races
through a friend’s house stark naked.
Make sure your child has an ID tag attached to him somewhere, with
current phone number and “autism” written on it. You can order medical
bracelets, necklaces, and tags to attach to shoelaces. If you can persuade
your child to keep it in his pocket, also make an ID card with a current
photo and date, plus home and mobile phone numbers and the number of
where you are staying. Indicate that your child has autism. Be sure to add
any other important details: allergies, medications, and any specific
information—for instance, whether the child is nonverbal.
TIPS FOR TRAVELING BY PLANE
Waiting lines at the airport have “special assistance coordinators.” You may
wish to explain about your child’s disability and some of the behaviors that
may inconvenience other travelers (for example, rocking in the seat).
If you will need help because you have other children and some carry-on
luggage, and your child is a handful, request that assistance be provided to
get to the gate after you check in, and ask that assistance meet you at the
airplane upon arrival. Remember that the person may not understand about
your needs. They may ask you questions and say that assistance is only for
the physically handicapped, so you may need to explain in concrete terms
why you need help (e.g., your child cannot move from one place to another
without physical assistance). Always be polite but insistent.

On the day of departure, talk to the airline agent at the check-in counter as
well as the security agents about avoiding the long lines. If they are unable
to help you, ask to speak to a supervisor. Sometimes, it is helpful to stress
the inconvenience that the other passengers will experience (e.g., “When
waiting more than fifteen minutes in a crowded area he will scream at the
top of his lungs and will not stop for twenty minutes, which can be
annoying to other passengers.”).
If there are two responsible persons traveling, you may wish to purchase
walkie-talkies to communicate in the airport (in the event cell phones are
off limits) so that one person may wait in line while the other is keeping the
children happy elsewhere.
Let the airlines know ahead of time if your child has food allergies or
sensitivities. They may be able to accommodate his special diet. Always
bring food items that your child can eat in case there is a flight delay or
there has been a mix-up.
Make sure your child is wearing clothes that are loose, comfortable, and
easy to pull off and on if needed. Bring any medications or pull-ups, baby
wipes, assistive communication tool, diapers, preferred food and drink
items, and books and toys the child likes.
Allow yourself plenty of time to get to the airport. Everyone will be calmer
if there is a feeling of calmness rather than a hurried pace.
FOOD FOR THOUGHT
Those Who Help
As time went on, the world of professionals, friends, acquaintances, and strangers
became divided into two camps: those who rendered things more difficult, and those
who helped. The first camp was far more heavily populated than the second. But
notwithstanding the sometimes painful lack of sympathy Marc and I and Anne-Marie
encountered, we were fortunate—indeed, blessed—in the people we did find who
helped, each in his or her own way.
—Catherine Maurice, Let Me Hear Your Voice

Addressing Other Issues Central to Home Life
There is not enough room in this book to discuss all the important areas that
parents may need to work on to make life easier at home.
As you may have realized, it is not always easy to know how to interact with
your young child with autism to help you establish a connection. A good
resource is An Early Start for Your Child with Autism: Using Everyday Activities
to Help Kids Connect, Communicate, and Learn by Sally J. Rogers, PhD;
Geraldine Dawson, PhD; and Laurie A. Vismara, PhD.
There are areas in which your child will need specific instruction. Those
listed here are important, but there are many others. Luckily there are resources
out there. Some families have access to ABA home programs, and they should
be able to help you in these areas. There are many books and articles on the
Internet that can help.
Although these books are older, Steps to Independence by Bruce Baker and
Alan Brightman and One on One by Marilyn Chassman are great places to start
for learning how to teach your child at home. They are simple and have great
practical ideas. Steps to Independence explains how to teach functional living
skills to children at home, and One on One is the best book I have seen for
teaching skills to the less able child with autism.
Here are some suggestions:
Toilet training. This can be difficult for some, easy for others. Some
children who have sensory processing issues and poor muscle control may not
“feel” when they have the need to urinate, or they may not have the necessary
motor control. It can take a long time to toilet-train some people. There are
books specifically about toilet training that are good, and Steps to Independence
by Bruce Baker and Alan Brightman and One on One by Marilyn Chassman
have sections on toilet. On the Internet, Autism Speaks, TACA, and
autismcollege.com have good articles about toilet training.
Chores. Teaching a child to do chores not only gives him independence, but
also makes the statement to siblings that everyone contributes to the household.

Both books mentioned above have ideas for you to try.
Desensitizing. Some children with sensory processing issues have a terrible
time getting their hair cut, their teeth checked by the dentist, wearing a hat, and
so on. Teaching a child to get used to an item or sound, little by little, is helpful.
Anyone who has a practical knowledge of ABA can devise a system. One on
One by Marilyn Chassman has a good section about how to teach your child to
tolerate stimuli that are difficult for him.
Behavior plans. These are an important part of making life easier at home
and teaching a child responsibility for his actions. Again, these are ABA
techniques and Steps to Independence by Baker and Brightman has a section on
them.
Social skills training. Children with ASD need to be taught social skills in
order to participate in activities with other children. In Chapter 5, different ways
of teaching these skills and helpful resources are discussed. If your child is
passionate about a particular topic or type of object, this could be a way to get
them to interact with others.
Safety training and other safety challenges. Many children with ASD do
not have any notion of safety and this needs to be taught to keep your child safe.
You may need to make some changes in your home to keep him safe. There are
some good tips at “Safety in the Home” on the Autism Society’s website.
Wandering and drowning are particular safety issues associated with
children with autism. There are great resources on how to prevent these tragedies
from happening on the National Autism Association’s Autism Safety website,
autismsafety.org.
Another safety issue is that individuals with developmental disabilities are at
a higher risk of abuse—mental, physical, and sexual—than their neurotypical
peers. Two great resources available at disabilityandabuse.org are “The Risk
Reduction Workbook for Parents and Service Providers” and “The Risk
Reduction Workbook for People with Intellectual or Developmental
Disabilities,” both by Nora J. Baladerian, PhD.
Adolescent Issues in ASD
Some adolescent issues will be discussed in Chapter 7 on education, and the
reader may wish to consult that chapter as well. Jerry Newport, Michael John
Carley, Jesse Saperstein, and other authors with ASD have written about their

teenage years and how their ASD affected them in contrast to their neurotypical
peers. Parents should read some of these accounts. They will give you
information you can share with your child’s teacher. See the Resources section.
For a more in-depth look at adolescence and resources, read my book
Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social,
Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders.
Online training with regard to adolescence and autism is also available on
autismcollege.com.
Puberty and Hygiene
Puberty is usually an awkward time, even for neurotypical people. Bodies are
changing, hormones are raging, moods are swinging. All children nearing
adolescence need to have an understanding of what is going on in their bodies.
Children with ASD need even more information and input from parents at this
time. Most children with autism have difficulty with change, thus the importance
of explaining the changes that will happen to their bodies. Things to keep in
mind:
Boys usually start puberty around age eleven and it may last until age
seventeen. They start producing testosterone, which leads to an Adam’s
apple. Boys need to be told about how their bodies are changing, about
erections and “wet dreams” that can happen while they are sleeping, and
that ejaculation can happen when their penis is rubbed, or they may be
perplexed and wonder what is wrong with them.
Girls generally start puberty before boys, beginning sometimes as young as
nine years old. In girls, overall body shape starts to change as breasts and
hips begin to develop, the menstrual cycle commences at some point, and
hair begins to grow on the legs and pubic area and underarms. It is
important that girls are told about the menstrual cycle before their first
period, so they are not confused and upset and think there is something
physically wrong. They will also need to be told who are the appropriate
people to discuss this with (parents, a teacher, a girlfriend) and that it is not
necessarily a lunchtime conversation topic in a mixed group.
Seizures may appear during puberty for one in four individuals with ASD,

possibly due to the increase of hormonal changes in the body. Sometimes
the seizures are associated with convulsions and are noticeable, but for
some they are very minor and may not be detected by simple observation.
You may wish to keep an eye out for the signs that indicate sub-clinical
seizure activity. These signs are little or no academic gain in contrast to
doing well during the childhood years; losing some gains academically or
behaviorally; and showing behavior problems such as severe tantrums, self-
injury, or aggression. You may wish to discuss any such changes with a
knowledgeable professional.
Hygiene is an area that needs to be addressed at this time. Puberty brings
the onset of sweat, and some teenagers will develop acne as a result of
intensified amounts of oil in their glands. Good habits need to be
developed. Daily face-washing and the application of deodorant and
grooming of facial hair for boys. Girls will need to learn how to use
feminine hygiene products.
Teaching about puberty depends on the functional ability your child
demonstrates. However, remember that nonverbal does not mean non-
understanding. The use of social stories with pictures tailored for that youth
is helpful. Some youths will need to go over the material more often than
others. Others may need help learning each step of a self-help skill
mentioned above. If your child learns very slowly, an early start will be
helpful in the long run.
Helpful books for teaching tweens and adolescents about these issues are:
Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for
Young People with Autism by Mary Wrobel. The information provided
can be adapted for different ability levels.
The Boys’ Guide to Growing Up: Choices and Changes During Puberty by
Terri Couwenhoven, MS
The Girls’ Guide to Growing Up: Choices and Changes in the Tween Years
by Terri Couwenhoven, MS

Sexuality
Sexuality is a topic that many of us would rather skip talking about, even with
our neurotypical children. However, sexual feelings are natural and everyone has
them, regardless of their level of ability. Children become adolescents and then
young adults. Some individuals with ASD want intimacy and to get married;
some do not. Many want friends and to date; some may not. But as adults, it is
up to them to choose, and it is up to us as parents to help them develop the social
skills they will need and teach them about self-esteem and self-respect and about
relationships and sex.
Even if your young adult is not interested in relationships or intimacy or sex,
this subject needs to be addressed. Sadly, people who have intellectual
disabilities are at a high risk of sexual abuse and of contracting HIV/AIDS. Even
if your child does not have intellectual disabilities, the very nature of ASD
makes it difficult for someone with the condition to read the social cues and
understand appropriate versus inappropriate behavior. These cues need to be
taught. There are different ways to teach them, and he needs to learn these things
from you. This is the time, while he is still living at home, to be teaching your
child about appropriate behavior. Even if as an adult he chooses not to have a
sexual relationship, he needs to know what is appropriate and inappropriate
behavior toward him, about giving or withholding consent, how to say no to
others, and how to let others know if he needs help or support. He needs to learn
to be able to tell a responsible person about any inappropriate behavior that
someone might be doing to him. It is imperative for your child’s safety that he be
able to identify appropriate places on his body where people can touch him. Not
only does your adolescent need to understand about behaviors, he needs to
understand what is behind them.
Autism-Asperger’s and Sexuality: Puberty and Beyond by Jerry and Mary
Newport is a wonderful resource for the more able teenager and young adult,
although parental guidance is recommended. The publishers suggest
photocopying certain sections of the book to give to your child to read. In this
way you can give him the information he is ready to handle. Jerry and Mary
Newport are a married couple who both have Asperger’s and share their
experience and advice about puberty and sexuality.
Intimate Relationships and Sexual Health: A Curriculum for Teaching
Adolescents/Adults with High-Functioning Autism Spectrum Disorders and
Other Social Challenges by Catherine Davies and Melissa Dubie is a frank

resource on sexuality tailored to the unique characteristics of high-functioning
adolescents and adults on the spectrum. The authors present “all you ever
wanted to know but were afraid to ask/teach,” taking into the consideration the
learning styles inherent in autism. The curriculum comes complete with lessons,
activities, handouts, resources, and more and has a CD with all the handouts for
easy duplication and individualization.
Concepts That Every Adolescent Needs to Learn
Modesty—private versus public. If your child has not mastered the concept of
modesty, now is the time to teach him. He needs to learn the appropriate place
for private acts (such as dressing or being naked). If he does not understand
through an explanation of the concept, then perhaps visual icons will help. Pick
an icon or color to represent public and one to represent private (do not confuse
him by using smiley and sad faces). Put the private icon on his underwear
drawer and his bedroom and bathroom doors, and the public icon on the doors to
the rest of the rooms and going outside. If he gets dressed in a place other than
the bathroom or his bedroom, or if he runs around the house with no clothes on
or in his underwear, now is a good time to teach him what is appropriate to wear
in public and in private. Perhaps you don’t really mind at home, but think of
when he will be living with others and how inappropriate it will be then. He
needs to learn now, or he won’t understand what the fuss is about years down the
line. If he comes out with no clothes on, you can remind him by showing him to
his room or bathroom with the appropriate icon, and pairing it with the icon on
his clothes drawer. Also, your child needs to learn about using the toilet on his
own with the door closed.
For some children, social stories will be effective in teaching about what
behaviors are to be done in private and which ones are okay in public. This
concept of private versus public is crucial to the child’s learning about the body
parts that are okay for others to touch, and the parts that are private and should
only be touched with his permission.
Masturbation. This is one of those activities that needs to be explained as
okay to do, but in private. Your adolescent needs to understand that it is a normal
behavior, but only in private. Many individuals with ASD practice self-
stimulatory behavior, and masturbation is the ultimate such behavior, so a parent
needs to accept the inevitable and make sure it is done in an appropriate place. If
your son starts touching himself in public, he needs to be told that that is a
private area, not to be touched in public. If your child is masturbating at school,

then a plan should be put into place. Communication on this issue should occur
between home and school. One way to handle this is to tell the student it is
inappropriate at school and that he can have private time at home. Then the
student should be allowed that private time once he is home.
Teaching to say or communicate “no.” Some children with ASD are
compliant and have learned through years of special education to follow
instructions and rules of behavior. However, for safety reasons, now that your
child is becoming a young adult, he needs to learn to say “no” even to you and
people of authority. One way to do this is to offer him a choice between two
things (e.g., a bar of chocolate or a carrot). When he states his preference, give
him the wrong one—and teach him to say, “No, I want the . . .” This needs to be
generalized to all kinds of subjects. Then you can make a list of situations to say
“no” in, some serious and some funny to make it fun (e.g., a stranger asks you to
get in the car; your dad wants you to eat worms). You can also teach him to say
“go away” by invading your child’s space when you know he doesn’t want you
there (e.g., when he has closed the door to his room and is watching TV). Stand
very close to where he is sitting, and when he does avoidance behavior (pushing
you away, moving to another spot), prompt him to push you and say “Go away.”
When you are teaching the concepts of “no” and “go away” you must respect his
right to choose, but do not confuse him by asking instead of telling in a situation
where he really has no choice (e.g., “Do you want to get ready to go out now?”
instead of “Time to get ready to go out.”). You can, however, create choices
(e.g., “Time to get ready to go out. Do you want to wear your blue jacket or your
red sweater?”) that he really has.
Relationship boundaries. This can be a difficult concept to teach. First your
child needs to learn about the various relationships (husband, wife, sibling, aunt,
colleague, close friend, neighbor, shopkeeper, and so on). Next comes the
concept of appropriate types of conversations and behaviors. One way to teach
this is through a “circle of friends.” Draw a dot in the middle of a big piece of
paper, with ever-increasing circles surrounding it. Each circle defines the
acceptable behavior and acceptable conversation of people in that circle. The
circle closest to the dot represents behaviors of people you are extremely close
to, and when first introducing the concept write “close hug” in this circle, then in
the next circle “big hug,” and so on with “handshake,” “wave,” and so on.
“Stranger” will be the largest circle farthest out. Hang this up in your child’s
room and add the people (by name or picture) he knows to the different circles,
discussing the concepts at his level. Then, when he meets new people, you can

add them to the circle.
Grooming and Dressing
In the teenage years, how you are dressed and how you present yourself are
extremely important. Luke Jackson and Jerry and Mary Newport in their
respective books talk about the importance of looking right. Jerry and Mary say
that right from the first day at school it is important to not look like a misfit.
ASD teenagers need help in this area. Reading parts of Jackson’s Freaks, Geeks,
and Asperger Syndrome and the Newports’ Autism-Asperger’s and Sexuality and
Your Life Is Not a Label can be very helpful to the teenager. The different aspects
that need to be taught to your child are what matches and what doesn’t; what’s
“in” and what’s “out”; and the importance of basic hygiene and cleanliness.
Parents, your teenager needs your support here. First impressions are crucial.
Jerry Newport talks about the importance of looking right to avoid bullying, in
addition to making friends. If you have no other teenager in the house, get a
friend’s teenager to tell you and your child what is hot and what is not. Often the
brand name is important. If you have a very small clothing budget, it is better to
buy the right thing from a secondhand store than the wrong thing new. Find out
what the current hairstyles are and teach your teenager how to have that look.
See if your teenage fashion adviser can go shopping with you and your child to
help with getting the right look.
Some children grow into teens who are still attached to their favorite item
and want to wear it everywhere—perhaps a Cinderella or Sponge Bob T-shirt.
One way around this is to have rules about wearing the shirt—that is, in the
house only. Taking a picture of the item and having it available in their pocket or
on their cell phone or tablet can be a good solution. If it is the softness of the old
clothes they like, purchasing gently used clothes that are already broken in may
help.
Teenage Emotions
With raging hormones come feelings that your child may not be familiar with.
Authors on the spectrum discuss this in their books as well. Reading about their
experiences will help you understand about the thinking processes of many
people with ASD, and give you ideas on how to help your child get through this

crossroad in his life.
Teenagers with ASD may physically be maturing at the same rate as their
teenage peers, but emotionally they tend to mature much later. Early adolescence
is when most young people seek more independence from their parents, strive
even more for approval from their peers, and try to fit in with the crowd.
Teenagers start showing an interest in romance, dating, and perhaps getting
physical with members of the opposite sex. Thus, while their peers are interested
in romance and start testing the system, the teenager with ASD may continue to
stick to the rules and value high grades.
The young person with ASD who as a child had difficulty with meltdowns
and aggression may calm down at puberty. However, adolescence is often a time
when tantrums appear or reappear. Usually these are due to frustration, which is
a normal feeling to have when you have ASD and don’t understand the social
cues and changes in your non-ASD peers. Another change is that usually in
primary schools the children are in the same classroom with the same teacher for
most of the day. In secondary school the teenager has to deal not only with
different teachers, but also with moving around to different classes. These issues
are discussed in Chapter 7.
There is a risk of depression during these years as it becomes apparent to the
teenager with ASD how different he is from his peers. As he becomes more
interested in socializing, he may be teased and scorned by others due to his lack
of required skills. Your child may be experiencing feelings of anxiety,
depression, or the “blues” that will go unrecognized if he is not encouraged to
talk about his thoughts with you. Your child needs to know that these feelings
are normal and how to recognize and identify the different feelings he is having.
For those less able, picture icons or simple drawings of happy and sad faces can
initially help the nonverbal person to communicate how they feel.
Research has shown that there is a higher incidence of depression or manic
depression in families with a child with ASD, perhaps due to a biological
predisposition. It is important that a person with ASD who is depressed be
treated by a professional knowledgeable about the condition.
Reports from adults on the spectrum indicate that many of them suffer from
anxiety and that this was heightened during the teen years. It is important that if
your child has this anxiety it is acknowledged by the family and school and not
just accepted as a fact of life. According to research by Dr. Scott Bellini,
individuals with autism tend to suffer from anxiety at a greater level than the
general population. As well, the study showed that poor social skills were

associated with social anxiety in teens.
Cognitive behavior therapy may be helpful as well as teaching social
relationship skills. Exploring Feelings: Anxiety: Cognitive Behaviour Therapy to
Manage Anxiety by Tony Attwood is a useful book.
Bullying
Bullying is a significant problem in secondary school, and for this reason I have
written about it in Chapter 7, which the reader may wish to consult. However, a
few suggestions are in order here for parents.
Bullying is very upsetting for the victim and should not be treated as a fact
of life that everyone deals with, because in reality it is only people who are
different who are bullied. Teenagers need to learn what is responsible behavior
and how to be tolerant of others. If they don’t learn this in school, where will
they learn it?
There are a number of steps to take when handling bullying. First, there is
reporting it so that it will stop. Second, there needs to be sensitivity and empathy
training for the typically developing students. Importantly, the student on the
spectrum needs to be taught social and conversational skills.
If your child is bullied, make sure you report it to the principal in writing. If
he or she does not respond, then go up the chain of command in the school
district. When a student with a disability is bullied, it is considered harassment
and therefore becomes a civil rights issue, requiring the school to report it and
the school must take action. The school is responsible for ensuring it does not
continue, and this requires long-term monitoring. If you are not getting the
proper response from your school, you may contact the Office of Civil Rights
(OCR) at hhs.gov/ocr/off. For more information on bullying, visit
stopbullying.gov.
FOOD FOR THOUGHT
Practice Helps

One way to help our young men is to help them learn a few stock social scenarios.
Support groups should have practice sessions in introductions. Family members can
go on “dates” with their daughter or son with autism. The practice of any social
activity is a good training ground.
As a parent, you can request that the school teach the social skills, behaviors,
and conversations that other teenagers expect from your child. Make sure that
goals and objectives for these are listed in the child’s IEP (see Chapter 5). You
can also try to teach the social skills to your child that will make him understand
more about neurotypical teenagers and the behaviors and conversation that they
expect from your child. Consult the Resources section of this book.
Some on the spectrum find that learning martial arts increases their
confidence. Luke Jackson also mentions that learning tae kwon do helped him in
many ways, including impressing his would-be tormentors. It not only helped
him with his motor skills, it boosted his confidence and made him feel better
about himself.
FOOD FOR THOUGHT
My Brother Jeremy
BY REBECCA SICILE-KIRA, TWELVE YEARS OLD
Jeremy is my older brother. He is fifteen years old and has autism. He likes to watch
TV, spin tops, twirl toys, and play computer games. He also likes to go for car rides
and go swimming at the pool and the beach. His favorite foods are french fries,
cheese, pasta, rice, salad, strawberries, cookies, and chocolate. He is in ninth grade.
He has some friends that he hangs out with at school. He also goes to school dances
with one of his aides.
I like playing games with my brother a lot. I’m usually busy, but when I am free I
try to play with him. We play games on the computer as well as board games. Some
of the games we play are babyish, so they can get really boring after a while. One of

my good friends, Rozlin, plays with my brother, too. She plays with him when she
comes over, and at the Boys and Girls Club.
Sometimes I get mad at my brother. If I don’t lock the door to my room while I’m
not in, he will mess up my whole room! He is constantly playing with my toys. If he
sees one of my toys lying around, he will pick it up and twirl it, until he finds
something else to twirl. After a while that gets very annoying. I also can’t leave my
toys out because he might break them. It’s not often that he breaks my toys, but
when he does I get really mad.
Now that Jeremy is learning how to type, he is able to communicate more with
us. I like this because now we can ask him a question and get an answer. Unlike
when he couldn’t type and we couldn’t ask him anything. Sometimes he types
something about me or to me. I like this because when he says something about me,
it is usually something nice. I do not mind that he is autistic too much. He has gotten
better at many different things. He does not hit as much as he used to. He is also a
lot more patient. Even though he is autistic, I like having him as my brother.
Social Skills and Dating Skills
Even if your teenager prefers to spend a lot of time alone, he will need some
social skills to get by in life. In Chapter 5, strategies for teaching social skills are
described. In Chapter 8, ideas for actual situations or places for socializing are
discussed. Again, social skills should also be taught at school and addressed in
the student’s IEP, but dating may be a subject you want to discuss at home.
For the able teens and young adults who are interested in dating, Jerry and
Mary Newport offer many words of wisdom in their book Autism-Asperger’s and
Sexuality. Have your teenager read certain sections (this can be done by
photocopying the section in question, which is authorized by the book’s
publisher for this specific purpose), then you can discuss them with him and
provide any support he needs. Luke Jackson’s book is a good resource for the
early teen years.
Girls on the Autism Spectrum
Although boys are five times more likely than girls to have autism, there are still
many girls with autism. Girls and women have areas of strength that can mask
their deficits. Often they display characteristics that make diagnosing autism
difficult.
Dr. Tony Attwood has identified some characteristics of women and girls on

the more able end of the spectrum, such as:
May be so successful at “faking it” that they only come to the attention of a
clinician when a secondary mood disorder emerges.
Usually have a single friend who provides them with guidance and security.
They also tend to offer peer support to others.
May use doll play to replay and understand social situations. Often have
imaginary friends and extremely detailed imaginary worlds.
Before making a first step, they try to understand a situation. As well, they
may mimic or even try to take on all the characteristics of someone they are
trying to emulate.
May read fiction or watch soap operas to help them learn about other
people’s inner thoughts, feelings, and motivations.
Often want to appease others and apologize frequently.
They tend to have what is classified as a “male brain,” and they may be
specially gifted in engineering and math.
May be categorized as “tomboys,” and usually show no interest in
appearances.
Tend to have a faster rate of learning social skills than boys, but they may
still need to be directly taught certain social skills.
Often have a special interest that is more likely to be unusual in terms of
intensity.
RESOURCES
Asperger’s and Girls by Tony Attwood, Temple Grandin, et al.
Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions
for Addressing Everyday Challenges by Lori Ernsperger and Danielle
Wendel

Safety Skills for Asperger Women: How to Save a Perfectly Good Female
Life by Liane Holliday Willey
Aspergirls: Empowering Females with Asperger Syndrome by Rudy Simone
Girls Growing Up on the Autism Spectrum: What Parents and Professionals
Should Know About the Pre-teen and Teenage Years by Shana Nichols
Parenting Girls on the Autism Spectrum: Overcoming the Challenges and
Celebrating the Gifts by Eileen Riley-Hall
Siblings
It’s not always easy to be a sibling, but having a brother or sister with ASD has
added challenges. These challenges can have both positive and negative effects
on a sibling. Parents need to be aware of the sibling’s feelings in order to
develop strategies of support to help him adjust. Some helpful resources for
siblings are listed in the Resources section.
On the positive side, many siblings develop a maturity and sense of
responsibility greater than that of their peers, take pride in the accomplishments
of their brother or sister, and develop a strong sense of loyalty. Siblings of ASD
children are usually more tolerant of the differences in people, and show
compassion for others with special needs.
On the down side, many siblings feel resentment at the extra attention the
child with autism receives, and some feel guilt over their own good health. They
may also feel saddled with what they perceive as parental expectations for them
to be high achievers. Many siblings feel anxiety about how to interact with their
brother or sister. Often there is a feeling of resentment at having to take on extra
household chores, coupled with restrictions in social activities.
Living with a Brother or Sister with ASD
Because of the behavioral characteristics inherent to autism, living with a brother
or sister with ASD is not easy. It is hard to foster a relationship with a sibling
who does not show any interest in being your playmate. After a while the sibling
stops making attempts to interact with the brother or sister. It is hard to harbor

tender feelings toward someone who invades your personal space and tears your
favorite art project off the wall, or twirls the tail right off one of your favorite
stuffed animals. And how can a sibling feel comfortable inviting friends over,
knowing her older brother with ASD may come running down the stairs with no
clothes on at any moment? Some of the behaviors exhibited by children with
ASD would be typical of a younger child’s behavior, but it is hard for a sibling
as time goes on and the behaviors continue (or are replaced with other, more
interesting ones) to feel anything but resentment.
Concerns of the Siblings
Some of the concerns siblings feel are about the ASD itself. They wonder what
autism is, if they can catch it, and if their brother or sister will get better or not.
Many feel that the parents spend more time with their brother or sister, and thus
feel that the child with ASD is loved more. They can be resentful of the special
treatment the other child receives and of the extra burden and responsibility they
feel they have. As they get older, siblings are more and more concerned about
the reactions of their friends.
How Parents Can Help a Sibling Adjust
Several different factors affect how a sibling adjusts, including the family size,
the severity of the brother or sister’s impairment, the age of the sibling at the
time of the diagnosis, as well as the gender and age of the sibling, and their place
in the birth order. An older sister may well feel responsible for a younger sibling
with ASD and try to “mother” or take care of him. On the other hand, a younger
sibling may find herself caring at times for an older brother, in contrast to the
traditional roles that she may be observing in other families. This can lead to
feelings of resentment. All in all, the parents’ attitudes and expectations have a
strong bearing on how a sibling adjusts.
There is much a parent can do to help a sibling adjust and experience more
positive than negative effects. Here are some tips:
Keep the lines of communication open. Knowing that they can ask
questions and talk about their feelings is the most important thing for

siblings. Let them know their feelings are normal.
Remind siblings that just because you give more of your time and attention
to the child with ASD, it does not mean that you also give him more of your
love. Let them know you love them just as much and that they are just as
important. They need to hear it.
Make sure that siblings have a private, autism-free zone to call their own.
Install locks to make sure they have a secure place to keep their precious
objects. Siblings need to feel they are safe and have privacy.
Set out consequences for the child with ASD if he wrecks or ruins siblings’
belongings.
Teach siblings how to play or interact with their brother who has ASD.
When they learn the skills of getting his attention and getting a response
from him, they will be able to interact with him on his level and that will
make them feel good about him.
Make time on a regular basis to spend with each of your children alone. It
doesn’t have to be a long period of time—a fifteen-minute breakfast alone
can be beneficial for parent and child. Schedule a special outing every once
in a while.
Do what you can to try to get the behaviors of the child with ASD under
control.
Make sure siblings have some time when they can have friends over and
spend time with them without having to always include their brother or
sister with ASD.
It may be helpful for siblings to meet or talk to children in the same
situation. Check with your local organizations to see if a support group for
siblings exists in your area. If not, see if there is any interest, and start your
own with other families. The Sibshop information online at
siblingsupport.org/sibshops and the book Sibshops: Workshops for Siblings
for Children with Special Needs by Donald J. Meyer and Patricia F. Vadasy
will help you do this.

Grandparents
Unlike the parents, who are focused on the autistic child’s needs, grandparents
are concerned about the effects of autism on their adult children (the parents),
other grandchildren, and future generations. They also suffer stress similar to
that of the parents and siblings. Grandparents may provide the autistic child’s
parents (who may be depressed, single, or divorced) with necessary support in
the way of childcare, financial support, and advocacy. But, in certain situations,
they may also contribute to stress because of conflict regarding behavioral
symptoms and treatment. Sometimes grandparents get involved in the blame-
game about the possible causes of the child’s autism.
Grandparents may want to help by babysitting, but most do not have the
training in behavior management or may not have the physical strength required
to handle behavioral episodes. They may just want to play with the child and
spoil him or her, and end up feeling rejected by the lack of “typical” exchange.
Providing available and willing grandparents with information and a little
training that can enable them to step in and give the parents a few hours of
respite can be beneficial to all involved. Explaining to them why their grandchild
acts the way he does (i.e., sensitivity to sound and light, not being able to make
sense of the world, lack of communication skills) is helpful. Suggesting they
offer to do a specific task, such as teaching the child to catch and return a ball or
play a simple game, or teaching a simple learning skill that needs much
repetition and positive reinforcement, can be helpful. In this way they can
understand both the effort needed and the excitement to be had in teaching their
grandchild an interactive skill. Grandparents will feel empowered knowing they
are making a positive difference in the family’s life, and the parents will feel
supported and more relaxed.
A useful book is Grandparent’s Guide to Autism Spectrum Disorders:
Making the Most of the Time at Nana’s House by Nancy Mucklow.
FOOD FOR THOUGHT
On Marriage

Anything you read about autism almost always says that the parents’ marriage
suffers more than anything. A lot of people separate. Men especially seem to have
trouble. I think men suddenly feel they are not the head of the family anymore. . . . If I
was going to believe in what I was doing, and allow my wife to take hold of her
growth and help my son, then I was going to have to step out of traditional roles and
complement her.
—Bill Davis, Breaking Autism’s Barriers
Marriage with an Asperger Partner
Asperger’s syndrome (AS) was officially recognized for the first time in 1994,
and many adults who fit that label were misdiagnosed before then and treated for
mental illness. (Since May 2013, the label “Asperger’s syndrome” does not
technically exist under DSM-V, but the individual characteristics still exist under
the broader category of ASD.) Although traditionally three out of four children
diagnosed with ASD are male, there is growing consensus that there may
actually be more females who fit the label of Asperger’s syndrome but have been
misdiagnosed with mental illness. Keep in mind that the information below is
based on heterosexual partnerships, although same-gender relationships occur
just as they do in the population at large.
Sometimes the diagnosis of an adult follows that of their child, sometimes it
follows marriage therapy, and sometimes it is problems at work that finally lead
to a diagnosis. A spouse may seek out a therapist with complaints of a cold,
uncaring, and unemotional husband, although she may have chosen her mate
because he appeared calm and reliable. An AS adult may appear depressed
because of the flat affect, monotone voice, and lack of direct eye contact. Others
may appear controlling and rigid, insisting everyone in the household stick to the
same schedule and participate in the same activities, due to a need for sameness
and inability to empathize. It is this lack of empathy that has the biggest impact
on the partner’s ability to understand their spouse, as well as any children, and to
recognize that their needs, perceptions, and thoughts are different from their
own. Poor empathy in the AS parent may contribute to behavioral and
psychological problems in the children. However, a parent with AS may be

better able to understand and cope with a child who has the same diagnosis.
Anxiety and stress can run high in adults with Asperger’s due to the
difficulties in communication and social interaction. Most lack what we think of
as common sense. Body language and subtexts of intonations are lost on them,
so that they may hear the words that were spoken, but not understand the real
message or context. Persons on the spectrum can be honest to a fault and may
make inappropriate comments in public, thus appearing rude and uninterested in
social situations.
These same communication problems can affect a person’s ability to keep a
job or move up the corporate ladder. Temple Grandin, PhD, often speaks about
how she almost got fired from her first important job because she kept writing
letters to the CEO telling him how he could improve the company. She had no
clue that the hierarchy at work dictated how, what, and to whom you
communicate.
Physical demonstrations of affection can be difficult for those adults who
suffer from sensory processing disorder and are overly sensitive to touch. Often
the AS spouse is surprised that his partner and children are feeling unloved and
unsupported, not realizing that his behavior does not show the support and love
he says he has for them. Some couples report that the partner on the spectrum
insists on routine even in sexual activity.
Finding out that a partner has ASD can provoke different feelings. One of
them is anger at missing out on aspects of a marriage that the partner was
looking forward to. Another feeling is relief that there is finally an explanation
for the problems they are facing. The positive aspects of having a spouse with
Asperger’s can include the realization that they are in most cases loyal, honest,
and dependable. Those who are diagnosed as adults who knew they were
different feel empowered and relieved once they receive the diagnosis, as now
they have a starting point for finding strategies that are helpful.
For a marriage between a partner with Asperger’s and a non-autistic partner
to work, each spouse needs to recognize the differences they have and why.
Understanding the deficits, reinforcing the strengths, and acknowledging the
needs of each partner is helpful. Teaching the willing AS partner behaviors that
are important to his spouse (such as greeting her when he walks in the house,
asking about the partner’s day at work, giving her a kiss) can be effective.
Research for my book Autism Life Skills indicated that those willing to learn can
be taught expected behaviors and strategies. Some of these include teaching
them the “hidden curriculum” (i.e., what non-autistics automatically learn and

take for granted) and making lists for visual learners; see page 126. Information
for partners and families can be found on these websites: Asperger Syndrome
Partners and Individuals, Resources, Encouragement, and Support (aspires-
relationships.com) and Families of Adults Affected by Asperger’s Syndome
(faaas.org). A couple of good books by Rudy Simone are 22 Things a Woman
with Asperger’s Syndrome Wants Her Partner to Know and 22 Things a Woman
Must Know: If She Loves a Man with Asperger’s Syndrome.
How to Keep Your Marriage or Significant Relationship Intact
All relationships need tending, no matter who your partner or spouse is. Many
couples look forward to having children, and all parents know the effects those
little bundles of joy can have on your relationship with each other. It is put on
the back burner as the new addition to the family takes center stage. When
children enter the picture, the couple may realize that they don’t see eye to eye
on everything, and there are squabbles about child-rearing: how the children will
be disciplined, what the appropriate bedtime is, how much TV the children can
watch, what constitutes an acceptable diet, and the importance of table manners.
Add to the mix the household division of labor (who does what), plus the
monotonous day-to-day routine of running a household, and often the
relationship starts to resemble two partners of a company gone bad rather than
the romantic liaison it once was.
The same is true when a couple has a child with ASD. However, more
ingredients are added to the pot: the emotional turmoil of the grief cycle when a
diagnosis is pronounced; the lack of support from the community; the waiting
for information from professionals; the incredible demands brought on by the
behaviors characteristic of ASD and the struggle to find and obtain an
appropriate education, as well as other essential services. For many, as the child
gets older, the demands of caring for him do not lessen as they do with
neurotypical children, and the difficulty of finding someone to care for those
older children with challenging behaviors so you can have some time alone
sometimes becomes a challenge in itself.
This is a lot for any couple to survive, no matter how strong. The good news
is that according to a 2010 study, the actual divorce rate for parents of children
with autism hovers at the same rate as those with neurotypical children—64
percent—according to researcher Brian Freedman, PhD, clinical director of the

Center for Autism and Related Disorders at the Kennedy Krieger Institute in
Baltimore.
In the end, no matter the situation, it is up to you, the couple, to do what you
can to keep your relationship or marriage afloat. Here are a few basic
suggestions:
Arrange for scheduled time alone on a regular basis. The first step in
being a parent, whether ASD is a factor or not, is to find someone to watch your
children on a regular basis, even if only for an hour or so to have time together.
Even when the children are not all-consuming, it is easy enough to fall into the
trap of never having free time alone. Use this time to do something that you
always enjoyed doing together before you had children. Granted, it is not always
easy to find someone to care for your child. Your concern should be for your
child and the carer’s safety. You will need to tell any person helping you about
the behaviors your child has and what they should do about them. Here are some
tips:
You know your extended family. Can you ask them to watch your child?
Do you belong to a church or community group? You may find some
volunteers who may wish to help you.
How well do you know your neighbors? Are they likely to know someone?
You may be eligible for respite services from a federal, state, or local
agency (see Chapter 4).
Call the local university and ask them to put a notice up that you would like
to hire a college student.
If you need to pay for the respite and do not have deep pockets, apply for
and use any available benefits. If all else fails, barter a service in return.
Perhaps you can exchange hours with another couple needing a few hours
off.
For more tips on finding and hiring respite workers, see “Tutors, Babysitters,
and Respite Providers,” page 259.
Discuss and decide what the division of responsibility and work will be.
There is a lot more to be done when you have a child with ASD. It is rare to find
a partnership that naturally absorbs the extra work and stress without one of the

partners feeling as if the burden has been placed on them. Usually, one person
jumps right in and takes over (usually the mother). This will lead to burnout, and
even more disengagement on the part of the other partner. Sometimes, when one
parent is working to support the family and the other is the homemaker, the extra
burden falls on the homemaker, while the breadwinner tends to be around less
and less, as the workplace starts to seem more fun than the home environment at
the moment.
Find someone to talk to. Sometimes, talking to other couples in the same
situation can be helpful. Just being with another couple who know what the two
of you are living every day can make you feel better. Perhaps you can help each
other out by sharing information or tips, or just meet up to relax among
understanding grown-ups. You can meet other couples through your local
support groups.
Go to couples’ counseling. If you are having a difficult time and feel that
your relationship is severely suffering and heading the wrong way, couples’
counseling can be helpful. Don’t wait till things are so bad you are talking
divorce. And if your partner refuses to go, then go alone. Contact your physician
for a referral. Try and find a counselor who has experience with ASD. Ask your
local support group for the names of any professionals they may know.
How to Provide for Your Child for When You Are Gone
Thinking about what will happen to our children when we are gone is not always
pleasant and is something we’d rather not have to think about. But the reality is,
no one lives forever, and provision needs to be made. No matter the ability or
needs of the child, there are always challenges you know they will face. Whether
your child is still a toddler or approaching middle age, a plan needs to be
created.
Many people procrastinate when it comes to this all-important area in regard
to our children. Parents are so busy just trying to deal with the present. And
having to take the first step toward making these plans is acknowledging that
one day you won’t be around, and that is a painful thought. However, making
plans is empowering because you are planting the seeds for your child’s future,
and you can rest assured that no matter what happens, you will have helped him
as much as possible, even when you are gone. Would you want the future of your
child to be decided by strangers because you hadn’t made plans?

Ten Steps for Future Care Planning
In order to prepare a plan in a simple step-by-step procedure without feeling
overwhelmed by the process, Bart Stevens, author of The ABCs of Special Needs
Planning Made Easy, recommends that families commit to knowing the
following ten life planning steps. If these steps are followed with the assistance
of a qualified special needs planner, the family will create a comprehensive plan
that addresses the lifestyle, legal, government benefits, financial, and care needs
of the person.
Regardless of the age or severity of the disability, creating a plan is critically
important now.
1. Prepare a life plan. Decide what you want regarding residential needs,
employment, education, social activities, medical and dental care,
religion, and final arrangements.
2. Write informational and instructional directives. Put your hopes and
desires in a written document. Include information regarding care
providers and assistants, attending physicians, dentists, medicine,
functioning abilities, types of activities enjoyed, daily living skills, and
rights and values. Make a videotape during daily activities such as
bathing, dressing, eating, and recreation. A commentary accompanying
the video is also useful.
3. Decide on a type of supervision. Guardianship and conservatorship are
legal appointments requiring court-ordered mandates. Individuals or
institutions manage the estate of people judged incapable (not necessarily
incompetent) of caring for their own affairs. Guardians and conservators
are also responsible for the care and decisions made on behalf of people
who are unable to care for themselves. In some states, guardians assist
people and conservators manage the estate of individuals. Many parents
who have children with disabilities do not realize that when their children
reach eighteen, parents no longer have legal authority. They must petition
the courts for appointment as a legal guardian. Choose
conservators/guardians for today and tomorrow. Select capable
individuals in the event you become unable to make decisions in the
future.

4. Determine the cost. Make a list of current and anticipated monthly
expenses. When you have established this amount, decide on a
reasonable return on your investments, and calculate how much will be
needed to provide enough funds to support your child’s lifestyle. Don’t
forget to include disability income, Social Security, and so on.
5. Find resources. Possible resources to fund your plan include government
benefits, family assistance, inheritances, savings, life insurance, and
investments.
6. Prepare legal documents. Choose a qualified attorney, paralegal, or
certified legal document preparer to assist in preparing wills, trusts,
powers of attorney, guardianships, living wills, and other necessary
documents.
7. Consider a “special needs trust.” A special needs trust holds assets for
the benefit of people with disabilities and uses the income to provide for
their supplemental needs. If drafted properly, assets are not considered
income, so people do not jeopardize their Supplemental Security Income
or Medicaid. Also, they don’t have to repay Medicaid for services
received. Appoint a trustee and successor trustees (individuals or
corporate entities, such as banks). There are various types of special
needs trusts. Make sure the person preparing your documents
understands the differences and provides you with the right one.
8. Use a life-plan binder. Place all documents in a single binder and notify
family/caregivers where they can find it.
9. Hold a meeting. Give copies of relevant documents and instructions to
family/caregivers. Review everyone’s responsibilities.
10. Review your plan. At least once a year, review and update the plan.
Modify legal documents as necessary.
Once you have decided to prepare a plan, find someone to help you or hire a
professional planner. Referral sources are available through governmental
agencies, organizations, or local support groups. Solutions are available. The
next step is up to you.
RESOURCES

wrightslaw.com/info/future.plan.index.htm
specialneedsalliance.org/home.
The Special Needs Planning Guide: How to Prepare for Every Stage in Your
Child’s Life by John Nadworny, CFP, and Cynthia Haddad, CFP
A short, easy-to-read book written by a certified financial planner and a
parent of a young adult on the spectrum is F.A.M.I.L.Y. Autism Guide:
Your Financial Blueprint for Autism by Greg Zibricky, CFP, ChFC,
CLU, CASL.

7
Education
It would be nice to think that things had changed since my school days, but, in
discussions, teenagers still at school today described the same problems and
issues as people in their thirties and forties (many of these school problems,
incidentally, were described in Hans Asperger’s original paper in 1944). In the
’80s and ’90s, awareness and research into Asperger’s syndrome increased
dramatically, but it is still taking considerable time for this new knowledge to
reach teachers and others “on the ground.”
—CLARE SAINSBURY, Martian in the Playground
My story is like Helen Keller’s, the amazing woman who started out deaf, mute,
and blind. Helen Keller had a teacher, Anne Sullivan, who taught her and took
her out of isolation . . . My mom saved me from a life of despair, much like Anne
Sullivan did for Helen Keller, and then many good teachers followed in Mom’s
footsteps.
—JEREMY SICILE-KIRA, A Full Life with Autism
I really hated to do it, but I had to file for due process when Jeremy was in
elementary school. I did not want to go through the cost in time, energy, stress,
and money we didn’t have. But there comes a time when you have to take a
stand. My son was regressing, and there was abuse and neglect occurring in the
classroom, which had been documented.
The severely handicapped class he was in was being taught by an untrained
substitute teacher, and there were different untrained school aides in there every
other week. They were barely providing babysitting services, let alone a safe
environment or an appropriate education. Meetings with the school district’s
director of special education just supplied us and other parents with unkept

promises. The advocate we had hired said she had done all she could.
We removed my son from school, started a home program, hired a lawyer,
and filed for due process. We were spending all our savings, and I was doing
nothing else but teaching our son, overseeing the other tutors, making
educational materials, and taking data. But I knew I was ethically and legally
right, and that I could prove it. At home, Jeremy gained back his lost skills and
learned new ones.
We wanted to avoid going to fair hearing, so we attempted mediation. The
school district came to the bargaining table with no alternative or compromise
for us to consider, and was chastised by the mediator for wasting everyone’s
time. We were obliged to proceed to fair hearing. On the first day of the hearing,
the new director of special education (the old one had gone) agreed that the
school district would refund us the money we had spent educating our son at
home, and agreed to provide an appropriate program for him, including training
for staff, stating that none of this should ever have happened.
A Few Facts About the Special Education System
If you are an older parent or a professional who has been in the trenches for a
while, this chapter will ring a few bells. If you are a parent of a newly diagnosed
child, a member of the general public, or a new teacher straight out of college,
you may be surprised by what you are about to read. If you are in a position of
power or hold the purse strings at the state or federal level, I hope that you will
read carefully, and reflect long and hard about the state of education for children
with ASD in the United States today and the working conditions the educators
are faced with.
The United States has arguably the best laws in terms of education and
protecting the rights of people with disabilities. As the years go by, advances are
being made, and in terms of education, students in need of special education
services are so much better off today than their counterparts of thirty years ago.
Challenges, Expectations, and Demands
However, there is a crisis going on in early intervention programs and schools
across the country. Nationwide, the number of children being diagnosed with

ASD is rising at an unbelievable rate. The settings may be different, but the
challenge is the same: Parents and professionals everywhere are grappling with
the issue of how to educate an increasing number of children in the best possible
manner. And more and more, as the struggle intensifies between the expectations
of the parents and the budgetary policies of administrative officials, it is the
frontline teaching staff who get caught in the crossfire, and the children who are
the casualties.
Over the last fifteen years, the expectations of the parents have increased
drastically. This is due to an increase in the number of teaching methods and
strategies known to be effective for children with ASD, and the access to
knowledge that parents now have thanks to the Internet. Regardless of ability,
parents expect their child to be treated with dignity and respect, and to be given
the opportunity to learn, using the methods that are known to be effective.
Parents believe that every child has the right to reach his or her potential, no
matter his capability. And rightly so.
FOOD FOR THOUGHT
It’s a Team Approach
BY PATRICIA H. SNIDER
Effective programming for children diagnosed with ASD requires a team approach.
Whatever the amount of programming (twenty hours, twenty-five hours, and so on), a
good one is based on ABA and includes social skills and play skills. We believe that a
highly structured classroom with at least three-to-one staffing is necessary to be able
to provide both one-to-one and small group instruction. In addition, effective
programming includes parent support activities such as clinics and periodic inservice.
In order for the program to be effective, everyone in the child’s environment must
understand and provide “therapy.” Hence, parents, school, and independent
providers, such as regional centers, must act as a team.
But it’s expensive! Yes, an effective program is very expensive. Two extremely
important team members are the state and federal governments. It is crucial that the
federal government fund its share of our mandated special education programs as it
promised. Then it is equally important that the state government fund an additional
fair share. This way, local school districts will not be put in the position of paying for
special education–mandated costs from the general education budget dollars, as is
currently the case. If everyone is in the boat rowing in the same direction, the boat

goes forward. Otherwise the boat goes in circles. We need a team!
Patricia H. Snider, MEd, EdS, was the director of pupil services, Del Mar Union
School District in California. She has been involved in education for more than forty-
five years, teaching both general and special education, and served as an
administrator in the field of special education for many years.
As the parents’ knowledge base and expectations for their children have
changed, so have the demands on the teaching staff, school administrators, and
education budgets. As demands intensify, educators are requesting more support
in terms of assistance and training in order to provide for these students, which,
of course, translates into the need for more funding.
The large numbers of court cases attest to the tensions that exist between the
school districts and parents. When communication breaks down between the
two, large amounts of time and money are spent on litigation instead of
programs and training.
When it comes to a challenge as all-encompassing as the education of our
children, there are no easy solutions to suggest. Parents and educators alike
know and live this crisis every day. But parents and educators should not be the
only ones concerned. Today’s children with ASD will become adults. If they do
not receive a proper and intensive early intervention, if the educational system
does not provide adequate resources for the educators teaching them, as well as
proper resources for preparing adolescents to transition into real adult life,
society as a whole will suffer. Not only will the costs to support these individuals
all their lives be greater than those of a proper education, but society will lose
out on the valuable contributions they could have made.
Special Education and the Law
Basically, students in need of special education services (i.e., special class
services, one-to-one school aides, assistive technology) are protected under the
Individuals with Disabilities Education Act (IDEA). IDEA was originally
created in 1975 and has been reauthorized several times, most recently in
December of 2004, with final regulations published in August 2006 (Part B, for
school-aged children) and in September 2011 (Part C, for babies and toddlers).
IDEA ensures that all individuals have access to a “free and appropriate

education” (FAPE), thus requiring public schools to make education available to
all children with disabilities. Until 1975, disabled children were often excluded
from school. Since 1975, IDEA has protected and continues to protect the rights
of hundreds of thousands of children with disabilities, including ASD.
FOOD FOR THOUGHT
Taking Responsibility
Everyone needs to take responsibility in an emotionally intelligent way. Parents need
to take responsibility for not accepting less than an appropriate education for their
child, while supporting the educational staff whenever possible and having good
communication with all concerned.
Teaching staff need to accept responsibility by stating their needs to their
superiors and refusing to provide services without the proper training and specialist
support, as well as asking parents for information that can help them understand the
child’s learning style.
And finally, special education administrators and the principal need to take
responsibility for leading the way by listening to what the frontline teaching staff are
telling them, understanding the educational needs of the child, and making some
effective changes. With the increasing numbers of children being diagnosed with
ASD today, this challenge is not going away any day soon.
As parents, educators, and administrators, we are responsible for the future of all
individuals with ASD. It is our responsibility to work together to ensure the best
preparation for the future of these children. They are counting on us and we must not
let them down. As neurotypicals, we should be able to handle the pressure,
communicate effectively, empathize with, and understand each other well enough to
work together. Aren’t we the flexible, socially cognizant ones?
IDEA is a federal act, and each state may provide more special education
rights than provided by IDEA, but a state may not take away rights that are
provided under this act. Much costly litigation takes place between parents and
school districts over the interpretation of what is considered an “appropriate”
education under the student’s right to a “free and appropriate education.”
In January 2002, the No Child Left Behind Act of 2001 (also called the
NCLB Act) was enacted. It expired in 2007 and since then has been stalled in
negotiations in Congress. Federal education law has been due for congressional

reauthorization since 2007. This law specifically forbade schools and states from
excluding students with disabilities from accountability systems, and all students
must participate in tests that accurately gauge their progress. This is important
because tests give parents and educators valuable information to target the areas
in which the child needs help. Parents have a right to know, even for the most
cognitively challenged, what their child is learning and if the teaching strategies
being used are effective or not with their child.
To stay up to date on changes to the law, parents and educators can stay
informed on special education and funding facts and concerns by checking the
U.S. Department of Education website (ed.gov) and your state department of
education.
Funding Facts and Concerns
When IDEA was created thirty-eight years ago, 40 percent of the funding for
educating special education students was supposed to be provided by the federal
government. Before 2004, the annual appropriations from Congress for IDEA
had only been around 14 percent. For 2009, the most recent year with data
available, IDEA federal funding covered 16.9 percent of the estimated excess
cost of educating children with disabilities, less than in 2008 when federal
funding covered 17.6 percent of the cost, and the same as in 2007. Therein lies
the crux of the matter: Local school districts are mandated to provide a “free and
appropriate education,” yet they are not receiving funds that were promised
when the federal law was originally created. This creates much tension at the
local level as special education encroaches on the general education budget.
The most recent cost figures, released in 2003 by the Center for the Special
Education Finance, show that students with autism have the highest per pupil
expenditure for special education services ($11,543). Also interesting to note
was the disparity between the states (the thirty-nine that participated) in the
amount spent per special education student. The figures ranged from a low of
$2,889 (in Oklahoma) per special education student to a high of $12,899 (in
New York) for the 1998–99 school year.
Obviously, funding is a major issue when it comes to providing for special
education students.

Personnel Facts and Concerns
The most important aspect of any educational program is the frontline
educational staff teaching the children. Studies and presentations released by the
Center on Personnel Studies in Special Education (COPSSE) show that:
There is a high turnover rate in special education teachers. Thirteen percent
of special education teachers depart each year, which is ten times the rate of
general education teachers. The available data suggests that there is a
critical shortage of special education teachers willing to work at the salaries
offered, under the working conditions that exist in the classrooms. The
shortage of special education teachers is chronic and long-term, and 10
percent of all teachers are uncertified (“Teacher Education: What
Difference Does It Make?” April 2003).
Work environment factors such as low salaries, poor atmosphere, lack of
administrative support, and role-definition problems lead to stress and low
levels of job satisfaction and commitment. These, in turn, can lead to
withdrawal and eventually attrition. Teachers who were younger and
inexperienced, and those who were uncertified, had higher rates of attrition,
as did those with higher test scores (“Special Education Teacher Retention
and Attrition: A Critical Analysis of the Literature,” Bonnie S. Billingsley).
In the 1990s and 2000–2002, the role of paraprofessionals (i.e., school or
instructional aides) evolved into one with a high level of responsibility
including decision making regarding adaptations, providing behavioral
supports, and interacting with team members including parents. The
teachers’ roles changed, too, becoming more like managers and
instructional team leaders (“Paraprofessionals,” Teri Wallace).
Federal provisions require that all paraprofessionals be adequately prepared
for their roles and responsibilities. The 1997 Amendments to IDEA require
training and supervision for paraprofessionals who assist in the provision of
special education services. Despite these laws, many local and state
agencies do not provide significant preservice or inservice training
(“Paraprofessionals,” Teri Wallace).
Special education administrators face the increasingly difficult task of
recruiting, retaining, and developing the professional skills of special

education personnel. Skilled administrators are sorely needed to steer
special education in the right direction. However, in the past ten years, the
preparation and licensure of special education administrators has not
received much attention. Also, states vary on how they endorse and certify
special education administrators (or avoid doing so) (“Special Education
Administration at a Crossroads: Availability, Licensure, and Preparation of
Special Education Administrators,” Carl Lashley and Mary Lynn
Boscardin).
Most special education administrators are (or should be) familiar with an
important 2001 study by the National Research Council’s Committee on
Educational Interventions for Children with Autism; the book describing the
study, Educating Children with Autism by Catherine Lord and James P. McGee,
is available online from the National Academies Press
(nap.edu/catalog/10017.html) and the usual online bookstores. Parents and
frontline teaching staff would benefit from it as well.
FOOD FOR THOUGHT
Know the System
As you prepare to explore the special education maze, you will need to know how the
process of special education works. Your knowledge of the school system’s
procedures and your skills in communicating information about your child are
essential to becoming an effective educational advocate. . . . As parents going into
school meetings, you are moving into a situation where the people you meet use a
language and a body of knowledge you may not understand completely.
—Winifred Anderson, Stephen Chitwood, and Deidre Hayden,
Negotiating the Special Education Maze
The study created a framework for evaluating the scientific evidence

concerning the effects and features of early intervention and school programs
designed for children up to age eight. The authors conclude that one of the
weakest elements of effective programming for children with ASD and their
families is personnel preparation (among other things). They also state that
teachers are faced with a huge task and outline recommendations for educating
children with ASD properly and for giving personnel the training and tools to do
so. This report has been cited by due process hearing officers and the courts in
terms of appropriate services.
Conclusion
Obviously, each individual state would be better off in terms of funding special
education if the federal government would follow through on its promise to
provide 40 percent of the funding of IDEA. However, for this to really help, the
states, when receiving these monies, would need to put them into the special
education budget, and not (as has happened at least in one state . . .) put it in
another purse.
Money helps, but it is not the cure for all ills. Suggestions for retaining
qualified personnel have been made by many and include keeping class sizes and
caseloads smaller, providing higher salaries for special education teachers,
providing some secretarial help to manage the paperwork, offering graduate-
level courses paid for by the school district, clearly defining job descriptions,
and providing opportunities for shared decision making.
Ensuring that instructional aides or paraprofessionals are adequately trained
and making sure their roles are clearly defined has also been suggested, as has
providing information to regular education as well as special education
personnel.
As school administrators are the leaders and decision makers when it comes
to funding and training, the preparation and licensing of these professionals
needs to be carefully examined to ensure that quality candidates are supported in
their quest to move upward in the system.
As one of the wealthiest (and supposedly more civilized) countries in the
world, we owe it to our future generations to leave the educational system all the
better for having been a part of the process—whether educator, administrator,
parent, or simply just the taxpayer.

How to Get the Educational Provision Your Child Needs
Although this section is intended primarily for parents, educators may find it
interesting reading.
In Chapter 5, various types of therapies and teaching methods were
discussed. To determine which of these methods—and exactly what program—
best meet the educational needs of a given child, information-gathering must
take place. Different professionals will do assessments, but as parents spend the
most time with their child, they can learn a lot about his abilities and learning
styles just by observing him. Regardless of whether your child is a baby or
school aged, you will need to form your own opinion based on your observations
of your child in his daily life.
FOOD FOR THOUGHT
The Meek Shall Inherit the Earth, but Only the Bold Will Get a
Decent Education for Their Child with Autism
This chapter may be difficult reading for those who are used to abiding by authority
and professional opinion. I mean no disrespect, but after living in three different
countries with my son, I can tell you that one must be polite, but not be meek, when it
comes to getting the education your child needs. If you do not fight for your child,
who will?
The status quo will not change unless parents become proactive, learn about
their rights and responsibilities, and convince the special education administrators
that they know what the effective teaching strategies are for their child with ASD, and
that they won’t go away until they get them, regardless of the school or ability level of
the child.
Be careful of the words of assurance from people in positions of power. Get
promises in writing. If people don’t call when they are supposed to, keep calling until
you get them on the phone. Document everything. Be polite, but be insistent. And
most of all, be brave.
The observations you note about your child’s abilities, challenges, and
learning styles will clarify which educational strategies and therapies could be

useful for your child. Significantly, they can also help you in your quest for the
right educational program. Once you know about your child, you can look at
what is on offer (and what is not!) and decide if they will meet his needs. And if
you believe that what is available is not appropriate for him, your documented
observations will help you get others (teachers, school district administrators) to
agree with you that another educational program or therapy is needed for your
child.
Determining What Your Child’s Educational Needs Are
Here are some good books for helping you determine your child’s educational
needs and how to get them addressed by the school district through the IEP
process:
Negotiating the Special Education Maze: A Guide for Parents and Teachers
by Winifred Anderson, Stephen Chitwood, and Deidre Hayden is an
excellent user-friendly book that has good advice on becoming an
educational advocate for your child. The authors explain how to make
observations and collect information, and suggest what questions to ask
when visiting prospective schools and classrooms. They also supply
useful charts and questionnaires to use as guidelines to gather
information. Teachers may find the book helpful as well.
Wrightslaw: From Emotions to Advocacy: The Special Education Survival
Guide by Peter W. D. Wright and Pamela Darr Wright gives good,
simple advice on how to become an advocate for your child and obtain
the education he needs. The Wrights have a website with current updates
on special education and the law and more of their advice:
wrightslaw.com.
The IEP from A to Z: How to Create Meaningful and Measurable Goals and
Objectives by Diane Twachtman-Cullen and Jennifer Twachtman-
Bassett. This book provides sample goal and objective templates for
different content areas, which are useful for writing goals and objectives
that are measureable.
Another good book is How Your Child Is Smart: A Life-Changing Approach

to Learning by Dawna Markova and Anne Powell. This book is helpful
in determining your child’s learning style—auditory, visual, or
kinesthetic.
The Everyday Advocate: Standing Up for Your Child with Autism or Other
Special Needs by Areva Martin, Esq. This book, written by an attorney
who is also a parent, teaches parents the skills to become better
advocates for their children.
Observing and Recording Your Child’s Abilities
This kind of information is invaluable when thinking about your child’s needs,
and what kind of educational program would serve him best. Yet planning an
appropriate program for a child requires documented and specific facts about the
child, not just impressions and concerns. Parents need to learn to observe their
child, to organize the information they glean, and to make sense of it.
Anderson, Chitwood, and Hayden give suggestions for recording
observations on how the child acts in different environments, and how he relates
to objects and people. These observations need only take five to ten minutes at a
time. A good way to do this is to step back from your role in the family and
watch your child, and see how he does without your help. For example, can your
one-year-old sit himself up without your help? Does he know and respond to his
own name? If your child is five, does he understand the rules of games and does
he follow them?
Different developmental areas. Once you have written down your
observations (e.g., “Sam can eat with a fork”; “Debra can do long division
unaided and correctly”), you can organize them into the different developmental
areas they pertain to. These areas are senses and perception, movement, self-
concept and independence, communication, thinking skills, and social
relationships. Your child will have different abilities in the different
developmental areas. Knowing about these different areas will be helpful for you
in identifying problems in your child.
In regard to young children from birth to five, check with your child’s
pediatrician. A good resource is “The ABCs of Child Development” on the PBS
website (pbs.org/wholechild/abc), or for a baby’s monthly milestones, see the
Baby Builders website (babybuilders.com/developmental-stages).
If you do a search on “developmental milestones” on the National Institutes

of Health website (nih.gov), you will have access to information about speech
and language milestones. For school-age children, your child’s teacher should be
a good source of information as to what is considered normal development.
Your child’s learning style. Children are different from each other, and so is
their learning style. Think about yourself. Do you learn better by hearing
information or by seeing it? Do you work best in a neat environment or a messy
one? Do you work long and hard, or do you take frequent breaks?
Now think about your child and what you have learned from observing him.
Observe him some more if you are not sure, thinking about how he learned to do
the things he does. Does he like watching videos and has he learned some
phrases from the programs he watches? Does he copy an action he sees someone
else do? Does your child do homework better alone or in the company of
friends? Does he do his homework in a quiet environment or a noisy one?
Sharing this kind of information with those who will be or are teaching your
child will enable them to create the best possible setting for him.
Take extra care when considering how your child learns. Your child may be
looking intently at objects, but may not be processing what he sees. Or he may
not respond to his name because he is hearing all sounds too painfully well and
may not be able to differentiate your voice from the background noise. The usual
hearing and visual tests will not show what is really occurring in terms of visual
and auditory processing. For more information on visual processing, go to
visionhelp.com; for auditory processing, go to
nidcd.nih.gov/health/voice/Pages/auditory.aspx.
Getting Early Intervention and Special Education for Your Child
Perhaps you are the parents of a preschool child, or you have an older child who
is experiencing difficulties. It may be that you are a teacher who has concerns
about a child in your class. A child may have been identified as having special
educational needs as a baby or toddler before entering the school system, when
he starts school, or when he starts encountering difficulties as he gets older.
Sometimes the teacher has concerns; sometimes the parents; or perhaps a young
person is having anxieties about their own ability to progress or difficulties in
certain areas.
It is not my intention to give legal advice, or an in-depth explanation of how
the system works, as each person’s situation is different, and every state is

different as well. Parents should be aware of their rights and responsibilities.
Teachers as well should know their rights, and need to inform themselves about
how IDEA is implemented in their state. There are wonderful resources
available, for both parents and schools, which are listed in this chapter and at the
end of this book. Every state has a federally mandated “protection and
advocacy” agency that can provide information and protection on the rights of
persons with developmental disabilities through legally based advocacy. To find
the one in your area, check acl.gov/Programs/AIDD/Programs/PA/Contacts.aspx.
Basically, every child under the age of three and at risk of developing a
substantial disability if early interventions are not provided is eligible for early
intervention. Your physician should be able to point you toward the resources in
your area and any assessments your child may need. However, if your physician
says, “Wait, your child will catch up,” and yet you feel that something is amiss,
do not hesitate to go see another doctor for a second opinion.
The names of the different programs vary by state, but you can check with
your state’s Department of Health, Department of Developmental Disability, or
Department of Education about early intervention in your area.
If your child is eligible for early intervention, an individualized family
service plan will be drawn up including the infant’s present levels of
development and a statement of outcomes to be expected, among other things.
Once a child is eligible for preschool services, the educational system takes
over. An individualized education program (IEP) is developed that sets out ways
of helping the child with his areas of difficulties, and goals and objectives are
developed. IEP team meetings take place annually to review the child’s progress
and placement, but may take place more often. The IEP team is made up of the
child’s teacher; a general education teacher (if that is not his regular teacher); the
parents; any professionals providing services such as speech and language,
occupational therapy, or adapted physical education; and a special education
administrator. Tips on preparing for the IEP meeting are discussed later in this
chapter.
If a parent has concerns about a child’s progress, she should first discuss
matters with the teacher. If the concerns have already been discussed with the
teacher, and nothing has been resolved, you could approach the special education
administrator or ask for an IEP team meeting.
Advocating for Your Child Throughout the Special Education Process

It may be that you are one of those lucky individuals living in a school district
that is truly knowledgeable about ASD and what works best for these students,
and that provides good training to its staff. Perhaps you have a wonderful early
intensive program with trained staff and appropriate supervision. Or perhaps
your older child with ASD is fully included at your neighborhood school with
specialist support, teachers who are knowledgeable and have the support they
need to help your child, and not a bully in sight.
However, you are probably one of the many who are obliged to persuade
their school district administrator about what is best for their child. If you have
other children, you may already have experience with the educational system.
However, when you have a child with special educational needs, you are
entering unfamiliar territory and you need to learn a new set of navigating skills.
For a few years I wrote and gave workshops with Merryn Affleck in the San
Diego area. Merryn was president of the North County Chapter of the Autism
Society of America in San Diego, and is now CEO of Autism Northern Territory
Inc. Our workshops were about developing the skills to become an advocate for
your child, and creating a good working relationship with your child’s school.
Whatever your situation might be, as a parent you will need to follow these
suggestions derived from our workshops to ensure that your child is getting the
program and educational services he needs.
Get to know how your child learns. For a preschool-age child, observe
how he interacts with people and objects. Does your child imitate others? Does
he try to do new things with different toys? Does he appear curious about his
environment? For older children, look at what your child’s track record says
about his learning style. For example, does he learn new concepts only with one-
on-one instruction? Is he able to focus with twenty-nine other students in the
classroom? Does he need a communication device? Does he learn by imitating
others? For how long can he successfully be integrated into a mainstream school
with support? What has worked in the past for your child and what hasn’t? What
has worked for other children like yours?
Learn about the educational strategies that work for ASD. Join local
autism groups, look at resources on the Internet, read books, talk to other parents
and professionals. Read Chapter 5 for a general overview on treatments and
therapies, and read the section for teachers later in this chapter (beginning on
page 217), as well as Chapter 6 on family life. You will find plenty of
information about educational strategies and what research has to say about the
various techniques, plus resources to find out more. ASD is a spectrum; all

children are different. Find out about which particular teaching methods and
strategies have been proven to be most effective with children like your child.
Learn about IDEA and “No Child Left Behind” and what these acts say
about the school’s duties and parents’ duties with regard to the education of
children. Live by the motto “Always be prepared.” You and your child are
consumers of the education system and have certain rights as well as
responsibilities. As a consumer you need to be informed as to what those are.
You need to be as astute on the law as your school district is. As mentioned
earlier, there are resources to help you. Every parent should contact their state’s
protection and advocacy agency (visit acl
.gov/Programs/AIDD/Programs/PA/Contacts.aspx to find your state’s agency).
Learn about your local school district. School districts vary on what kinds
of programs or specialist support they have given in the past and are geared
toward providing. There are regional differences, and some are better about
hearing the needs of the child versus the budgetary constraints. Again, it is up to
you to think outside the box. Don’t depend on the district giving your child what
he needs; more often than not you will have to ask for it. Remember, your child’s
IEP should be about meeting his educational needs, not what the school district
is used to providing. Find out from other parents what your school district’s track
record is for children with ASD.
FOOD FOR THOUGHT
Parents and Educators as Partners
BY ELLEN LEGARE
Remember when kids went to school to get an education and parents reinforced
learning by helping (but not too much) with homework? Like it or not, times have
changed; and so must we. We must recognize that children may go to “toddler
school” or preschool and although parents are a child’s first teacher, they may share
the educational experience with a variety of professionals.
Educators educate and parents parent; but somewhere along the line these two
groups come together to form a “team” to provide an appropriate program for kids
with special needs. Both are educated, experienced, and want the best for kids.

Team meetings get personal. Discussions may range from where and how the
child sleeps and eats at home to the level of training a teacher may have. How can
meetings between educators and parents be successful?
TRY A FEW OF THESE IDEAS:
Stick to the facts and don’t try to interpret
Don’t be quick to judge
Listen to each other
Be honest
Be respectful
Stay organized
Discuss the present—not the past
Recognize barriers
Collaborate
Communicate in a nonthreatening manner
Question each other
Explore all the possibilities
It takes time and energy to build a relationship, to trust in another person, and
when concerns and issues become barriers it is even more difficult to reach an
agreement. Don’t limit the team meetings to discussing the goals and objectives
without recognizing that each team member brings individual expertise as well as
their own perspective. Do remember that each perspective is just that—their own
view. Listen respectfully and move on to address the issues and concerns that
brought the team together.
Meetings between parents and educators should be considered “works in
progress” and dynamic. Listen and learn; you may be glad that you took the time to
do so.
Ellen LeGare is a special education advisor (and a parent) with over thirty years’
experience building relationships with educational teams. An active member of
parent associations such as PTA, CAC, and EFRC (Exceptional Family Resource
Center), Ellen has been trained in alternative dispute resolution and mediation
methods.

Familiarize yourself with the different types of school options. Your child
has the right to a free and appropriate education in the least restrictive
environment. Depending on where you live, your child, and his needs, there are
different options, including full inclusion in his neighborhood school, resource
units, learning centers, special education classes in neighborhood schools,
regional classes, classes for severely handicapped children, learning-disabled
classes, residential placement, homeschooling, and private schools.
Visit different schools and different types of classrooms. Before making a
decision regarding your child’s educational program, and what you think would
be best for your child, visit the different options that are in your area. Keep in
mind, however, that the class you are seeing now may not look the same the
following year, and the teacher whose class you are visiting may not be there
when your child is going to be a student there. There are many factors to
consider when making a decision about your preference, regardless of the type
of classroom. At any school, the appropriate questions to ask would include:
How many children are in a class?
What is the ratio of staff to children?
Do the staff have appropriate skills and access to training to help your
child?
Are there any specialist resources (such as a behavioral consultant)?
What kind of experience do the school and the teacher have with children
with ASD?
What teaching methods and strategies specific to ASD are the staff trained
in?
Is the school prepared to fit their systems around the child rather than being
concerned about how a child will fit into the school system? For example, if
your child is fully included, is there a “safe” place for her to go if she is
feeling overwhelmed and stressed? Can school rules about eating in the
dining hall be bent so that vulnerable children and their friends can eat
together and have a lunch club in an empty classroom?
It is critical to ask specific questions about the teacher’s experience with and

knowledge of ASD. Flexibility is also important. A teacher may not have much
knowledge about ASD, but may be flexible about the needs of your child and
willing to learn what is necessary to make this a positive experience for your
child.
Do not be comforted by a good ratio of staff to children in a special
education class unless you know that the teaching aides or support staff can
demonstrate a functional knowledge of teaching methods proven to be effective
with children with autism. Even the best teacher cannot be effective if she has
untrained staff.
As autism is a spectrum, the staff may have had experience with a different
ability level from that of your child or a different severity of autism. You want to
make sure the staff have a working knowledge of your child’s type of difficulties
or ensure that specialist support will be provided by someone with that level of
knowledge. Some children with autism require a one-on-one aide, and you will
need to consider whether or not you feel it is necessary. Again, this person will
require training.
Develop good relationships. Develop and maintain good relationships with
everyone you meet. If your child is already in school, make sure you have open
lines of communication with the school staff. There should be a good flow of
information going in each direction to make sure that you are all on the same
page when it comes to behavior plans, toilet training, and homework. Often the
frontline staff have their hands tied. By working together you may be able to get
resources for your child or the classroom.
Learn about intensive behavioral therapy. (See page 112.) This has been
shown to be the most effective treatment for young children. Some districts are
providing this for students with ASD. If you think this is what is best for your
child and want to find out more, contact local autism support groups in your area
and ask to be put in contact with parents who have experience with this in your
area. Contacting other parents can be very informative.
Keep good records. Make sure you have copies of any assessments, reports,
individualized education plans, and statements. Keep all assessments and reports
in chronological order; they will be easier to find. Make sure you get copies of
any assessments the school district has requested on your child’s behalf.
Keep good notes of any phone calls, meetings, and conversations about
your child. Keeping a notebook for this purpose is a good idea. Sometimes it is
easy to forget suggestions professionals may make that are helpful, or when
someone at school has told you something they are doing for your child, so

writing notes (including names, professional positions, and dates) is very
helpful. This is also a good way to jog people’s memories about timelines and
follow through on actions that need to be taken. It is also an ideal place to note
attempts that you make to contact individuals who are having a hard time getting
back to you. It’s helpful to keep each contact on a separate page. This makes it
easier to refer to in any meetings or letters, as well as to organize as evidence in
any potential due process.
Do not be afraid to ask questions. If you don’t understand certain
expressions or jargon, or what someone said, ask for an explanation. If you are
unclear about who is supposed to be doing what when, ask specific questions.
This is especially true in something as important as a statement. Make sure the
wording is specific. For example, what does “help on a regular basis” mean?
Does that mean once a year, once a month, or once a week? How small is a
“small group”? If you are told that a particular professional will monitor a
program, the question begs to be asked, who is devising the program, carrying it
out, and how often? Sometimes the wording is vague in order to allow flexibility.
However, it should be specific enough so you know who is responsible for what,
and how often it should happen.
Do not feel intimidated by the professionals. Remember, you are the
expert on your child. Never feel intimidated or that your input is less valuable
than that of the teaching staff, other professionals, or the school district. If you
feel intimidated, learn more about your child, his disability and abilities.
Knowledge is power. Remember that you can consent in whole or only in part to
team decisions made. You can delineate in writing that which you do not agree
to.
Keep focused on your goal: a free and appropriate education in the least
restrictive environment for your child. Although you do want to develop good
relationships, remember that this is not about whether people are “nice” or trying
to do what they can. Either your child is getting an appropriate program
(meaning staff are knowledgeable and trained or given the specialist support they
need if necessary) and is showing progress, or he is not, and that is the crux of
the matter.
Monitor your child’s progress and educational program. Education is a
continual process, including review and assessment: You review what is
supposed to be happening, and you assess its effectiveness. Parents of
neurotypical children monitor their children’s progress all the time. Parents of
children receiving special educational services may need to be more vigilant.

There are a variety of ways to achieve this. Base your monitoring method on
your relationships with your child’s teachers, therapists, and school
administrators.
Develop good relationships in the community. Being on the local school
board or advisory committee of the school or district your child is in is an
excellent way to meet other parents and to network with the professionals. I
encourage those of you out there with extra energy and time on your hands to get
elected. This is where decisions are made regarding local school issues. Our
children need to be represented. You can have a positive impact on your
community.
The Individualized Education Program (IEP)
If your child is receiving special education services, an individualized education
program must be developed at a meeting with at least the parent or parents, the
child’s teacher, and a school district administrator. At time of writing, this
meeting must take place at least once a year.
The IEP document is very important, as it establishes what services your
child will receive and the goals and objectives for the coming year. For more
information read The IEP from A to Z: How to Create Meaningful and
Measurable Goals and Objectives by Diane Twachtman-Cullen and Jennifer
Twachtman-Bassett; it’s a great resource for helping to prepare an IEP. Better
IEPs by Barbara D. Bateman and Mary Anne Linden is another great book.
It may be that you and the other members of the IEP team meeting are in
agreement about your child and his educational needs. Sometimes, however, this
is not the case. Remember that team meetings are not meant to be battlegrounds.
If you are not in agreement after listening to the other members of the team, then
state your position. If you cannot agree with the team, then you must agree to
disagree. Once you start “losing it” in front of staff and make insulting and
degrading comments in front of others, you have most likely already lost the
battle. If you have concerns that a team may have differing opinions, it’s a good
idea to ask permission to tape-record the meeting (you will need to check your
state’s required notice time and the district may tape-record the meeting as well).
This saves a lot of “he said, she said” if ever there were to be mediation or due
process.

Eighteen Tips for Getting Quality Special Education Services for Your
Child
The following tips were written by Ellen S. Goldblatt and Dale Mentink, senior
attorneys at what was then called Protection and Advocacy Inc. (PAI, now
Disability Rights California), a private nonprofit organization that advocates for
the rights of Californians with disabilities. Each state is mandated by federal law
to have an advocacy agency to protect the rights of people with disabilities,
including those with developmental disabilities. Go to
acl.gov/Programs/AIDD/Programs/PA/Contacts.aspx to find the one in your
state.
BEFORE THE IEP MEETING
1. Request needed assessments in writing or get independent assessments.
Your child can be assessed in any area of suspected disability and for any
services needed for him to benefit from school. For example, assessments
may be done of reading or math levels, on the modifications needed to
fully include your child, for therapy services (OT, PT, speech, mental
health), and to identify assistive technology like a communication device.
If you disagree with the school district’s assessment, you can obtain an
independent assessment at public expense. Always request assessments
in writing. An assessment plan must come within fifteen days. Once you
sign the plan, the assessment must be completed and the IEP meeting
held within fifty days (with some exceptions).
2. Ask to obtain assessment reports one week before an IEP meeting.
Whether you or the school district requested the assessments, ask the
school early on to provide you with copies of the written assessment
reports a week before the IEP meeting. This is very important so that you
can read the reports, discuss them, and plan for the meeting.
3. Plan for the meeting with a friend or advocate. In planning for your
child’s IEP, you may want to contact a local advocacy organization or
parent advocacy group. (All states have a protection and advocacy
agency and, depending on where you live, there may be other advocacy
resources or attorneys who specialize in special education law.) Or buddy

up with another family and assist each other to plan for IEPs.
4. Review any assessment reports with this person. Identify your aims for
the meeting, and think about what your child accomplished last year and
what you hope he will learn next year. Identify the special difficulties or
strengths of your child that you want to bring to the school’s attention. If
you are seeking full inclusion or increased integration, identify how your
child interacts with nondisabled children outside of school and what
makes it successful.
5. Consider full inclusion or increased integration. The law says that to the
maximum extent appropriate, as decided by the IEP team, children with
disabilities shall be educated in their neighborhood schools and attend
regular classes (with supplemental aids and services). These placements
are called “full inclusion.” Today many researchers and parents believe
all children with disabilities can and should be fully included. You should
definitely consider before the IEP meeting whether you want your child
fully included or simply want to increase her integration opportunities in
classroom and/or extracurricular activities (clubs, field trips, etc.) at her
school.
6. Make a list of the points you want to raise at the IEP meeting. However
well you plan, you may get nervous or distracted at a meeting with
several professionals. Thus, it is good to make a list of points and
questions in advance so you won’t forget. You can check off points as
they are discussed and jot down the answers to your questions.
AT THE IEP MEETING
7. Bring a friend, advocate, and/or a person who knows your child. You
can invite anyone you want to your child’s IEP. It is always a good idea
to have someone with you. If there is a day-care operator, grandparent,
tutor, behavior specialist, or other person who knows your child and her
learning style, it can be helpful to bring them to the meeting.
8. Don’t be afraid to ask questions, and make sure you understand any
“jargon.” Schools are required to explain all findings and
recommendations in easily understandable language. District staff use the

same terms every day and may forget that the world doesn’t know what
they mean. Some parents don’t ask questions because they feel it makes
them appear unintelligent or unsophisticated. The fact is that the most
intelligent and sophisticated parents often ask the most questions.
9. Discuss the present level of your child’s performance. Discuss reports,
assessments, and your own and the teacher’s observations of your child’s
performance; record his abilities and issues.
10. Develop annual goals and short-term objectives. Review progress on
prior goals, then formulate new goals and objectives. If you want your
child to have greater integration or full inclusion, then you should request
objectives that include interaction with nondisabled students (e.g.,
“Molly will learn to take turns by playing a game with nondisabled
peers”).
11. Identify full inclusion or integration opportunities and the supports
needed for success. The district must provide supplementary aids and
services to accommodate the special education needs of students with
disabilities in integrated settings, including, for example, a trained aide,
use of a tape recorder, an inclusion specialist to help the regular
education teacher modify curriculum, or a behavioral plan to address
disruptive behaviors.
12. Describe the placement for your child and identify specifically the
supports and related services needed. All related services, such as speech
therapy, should be identified, including frequency and duration; for
example, twice a week for one hour. The parameters of the placement
should be stated clearly (e.g., “Karen will be fully included in second
grade with a full-time aide and five hours a week of a full-inclusion
specialist” or “John will attend a special day class for communicatively
handicapped students with mainstreaming for science, chorus, and all
regular school activities”). You do not have the right to require the
district to provide its services from a particular teacher in a particular
classroom. Specific placement options should, however, be discussed at
the IEP.
13. Sign the IEP only if you are satisfied. You do not need to sign the IEP at
the meeting—you can take it home to discuss it with others and think

about it. You can consent to only part of the IEP so those services you
agree with can begin. If you sign the IEP and later change your mind,
you may withdraw your consent by writing to the special education
administrator. If you and the district disagree on services, the last agreed-
upon IEP remains in effect while a due process hearing is held. This is
called “stay-put.”
AFTER THE IEP MEETING
14. Meet your child’s teacher(s) at the beginning of the year—be a
classroom volunteer if possible and/or participate in school activities.
Parents have different amounts of time and money. Analyze your
situation and then contact the teacher or school to determine how you
could be of assistance. If you work during the day you may be able to
help prepare materials in the evening in your home. Not only will you
become more familiar with the school and its staff, but your child will
feel special.
15. Support your child in developing friendships with her classmates.
Assist your child in calling friends outside of school and to make
playdates. Having friendships with nondisabled and disabled children
will help your child be part of the community.
16. Monitor your child’s progress. You may want to arrange for a regular
communication system with your child’s teacher, such as a notebook that
goes back and forth to school. Note projected target dates for your child
to master particular skills and ask the teacher to let you know of his
progress. Monitor to ensure that supplementary aids and services are
actually provided.
IF THINGS DON’T WORK OUT
17. You can file a compliance complaint if the school district does not
follow the law or fails to provide services required in a signed IEP. You
can, as a recourse, filing a compliance complaint when you believe the
district has violated a part of special education law or procedure. The
complaint is investigated by the district or the state Department of

Education, which then issues a written determination of whether the
district was or is “out of compliance.” Check with your local advocacy
agency for more information.
18. You can file for a due process hearing if you and the school district
cannot agree on the special education services appropriate for your
child. When you and the district disagree about your child’s eligibility,
placement, program needs, integration, or related services, either of you
may request a due process hearing. At the hearing both parties present
evidence to an independent hearing officer (hired by the state). The
hearing officer will decide on the facts and the law and issue a written
decision. Check with your local advocacy agency for more information.
FOOD FOR THOUGHT
Living with Inclusion: How It Works Best for This Autistic
BY JUDY ENDOW
This article was originally published at special-ism.com. Reprinted with explicit
permission.
As an autistic, I sometimes feel boxed in by the best practice strategy of inclusion.
Please don’t get me wrong—inclusive education is a very good thing! Historically,
people with disabilities were not given access to public education. Then, over time,
laws changed. Today we have special ed classrooms in our schools and the
progressive schools practice inclusion.
TODAY’S INCLUSIVE EDUCATION
Inclusion means that all the students get to learn in the regular environment.
Instruction is differentiated while physical, sensory, emotional, and every other need
of each student is taken into consideration so that all students learn together, each
one doing and being his very best self. Inclusion allows each student to belong to the
community of his peers.

MY PERSONAL TAKE ON INCLUSION
I love the idea of inclusion. It is right and good. It is very important. And sometimes
this setup doesn’t work well for me. I am not able to access my thoughts and words
in real time. Even a quiet environment, when several people are in the same room, it
does not necessarily allow me access to those people or even to my own thoughts.
Sometimes this sort of situation can propel me to shut down or melt down.
In fact, now that I have access to the typical world and experience an inclusive
adult life in my community, I am discovering that I don’t always want to participate in
the typical world. If inclusion is good and right, then why is this?
A BREADTH OF INCLUSIVE
EXPERIENCE
As I ponder this question for myself as an autistic, I realize that the world is run
according to the majority. This means a neurotypical (NT) brain is what is behind the
conventional constructs of our society. Inclusion works the way inclusion works for
the NT majority. Inclusive opportunities, and indeed all of inclusive education and life,
happens via NT style. It is what we have. It works for NTs and it even works for me
some of the time. It allows a breadth to inclusive experiences.
A DEPTH OF INCLUSIVE
EXPERIENCE
But at other times I need to honor my autistic neurology. While I love being part of the
everyday fabric of life in my community, I also need to spend time living my life with
other autistics. This is where I find the depth of inclusion my heart and soul searched
for my whole life. It feels like home to me. It is the place where I do not need to inhibit
my natural noises, flaps, and extraneous movements and moans. I do not need to be
mindful of the hundreds of social rules of NT society. I am free to be my true self. My
autistic friends do not judge my intelligence, potential contribution, or human worth by
my unconventional mannerisms. I belong, just as I am in my natural state, accepted
and loved for my whole self—not just for my NT lookalike self.
THE BREADTH, THE DEPTH, AND THE IMPORTANCE OF CHOICE
And still, for me it is quite important to know how to get along in the world at large. I
love the freedom of being able to walk in and out of any place in my community and
fit in so as to appear to belong. I love being able to take my place in the world at
large. I am grateful to have this choice because it hasn’t always been this way in our
world.

Additionally, a different and just as valid inclusion comes from the community of
my autistic friends where all of me—including autistic traits and mannerisms—is
understood and cherished. This is the place where I have the most fluid access to the
best of my being, likely because I do not have to inhibit my natural autistic self. To me
this is special.
FROM A HISTORY OF
MARGINALIZATION
At the end of the day, I ponder the situation through history. Being “othered” most of
my life in “special” settings never felt like inclusion to me. It felt like being shoved to
out-of-the-way places of “less than.” Then later, given only the opportunity for
inclusion NT-style, I was left wanting and longing for something I did not understand.
It wasn’t until I was part of the larger NT-style inclusive community that I was then, in
turn, able to find my home in the autism community, a place my heart longed for over
many years.
TO A FUTURE OF COMPREHENSIVE INCLUSION
I believe we may come to discover in the future that to thrive and to be all that we can
be, we autistics will need both the breadth of NT inclusion and the depth of autistic
inclusion—two distinct and equally important styles of inclusion. As autistics, we also
need to be empowered to choose how this mix best works for us in our given autistic
bodies. My needs wax and wane over time, but it remains constant that to love and to
be loved I need access to both inclusive environments and to be able to choose the
mix that serves me best. This allows me to belong and to participate fully in the
human race.
THINGS TO BE MINDFUL OF AS AUTISTIC CHILDREN GROW UP
1. Make sure your child learns the social skills and the hidden curriculum
necessary to be accepted in the NT-inclusive environments at school and in the
community.
2. Give your child the real scoop on his differences with the real language to
explain these differences. This is the first step to becoming a self-advocate.
3. Make sure your child has access to autistic inclusion so he has the opportunity
to know the comfort of being at home in his own skin among others who
experience the world in a similar way.
Judy Endow, MSW, is an author, artist, and international speaker on a wide variety of
autism-related topics. She is part of the Wisconsin Department of Public Instruction
Autism Training Team, a board member of Autism Society of Wisconsin, Autism
National Committee, and also works with Autistic Global Initiative. Besides having
autism herself, Judy has three now-grown sons, one of whom is on the autism
spectrum. For more information, please see judyen dow.com.

Other Tips to Keep in Mind During the IEP Process
Mediation is an option for parents and schools seeking to resolve a dispute
arising either prior to or concurrent with a due process request. These are
not limited to disputes involving the IEP. Mediations are confidential, and
an impartial mediator facilitates to encourage both sides to work together to
reach a mutually acceptable agreement, which is legally binding.
The IEP is not the “end all”; rather, it is the beginning of ensuring a suitable
education for your child. Maintaining the IEP is a continual process, just
like education. As a parent, you may need to monitor the plan that is being
implemented.
Risk-taking is an integral part of life. Many people are timid by nature and
do not like to risk the ire of those in power by questioning authority or
professionals. However, you are the expert on your child. What is it that
you want for your child—what do you think he needs to learn and how does
he learn best? If you are not in agreement with what others think is best for
your child, you need to think about what the risk is of not speaking up.
Think about what you would do if you were not afraid, then do it. Do you
want to spend the rest of your life thinking, “What if I had said . . . ?”
Parents who have a child with a disability have more stress than other
parents. Dealing with the systems that are in place to “help” your child
often creates even more stress than the child himself does. These feelings
will overpower you (remember the grief cycle?) from time to time. You will
find that you take your frustration out on the wrong targets, usually the
systems and people who are actually there to help you. Learn to recognize
when you are not in control of your emotions or your stress level is high.
FOOD FOR THOUGHT

A Teacher’s Quest for Integration
BY KARLA ZICK-CURRY
They are able because they think they are able.
—Virgil
Two days before school started, I got copies of nine individualized education
programs (IEPs) from the district secretary. I began reading through the IEPs, speech
and language reports, and psychological reports. I began to wonder, how am I going
to effectively teach nine students with only two paraprofessionals and myself? I knew
that two days of contemplating this question would only cause even more questions
to arise, so I decided to focus on the empty classroom that awaited and the endless
new employee meetings that I was required to attend.
The bell rang two days later at 9 a.m., and I was about to meet the nine students
that were assigned to my classroom. One by one each student entered the
classroom either independently or with assistance. As I looked around in a daze, I
noticed two feet sticking out from underneath the big blue beanbag that sits in the
corner of the room. That must be Kyle, I thought. This was the first of Kyle’s many
responses to situations that mimicked what I ultimately wished I could do, but I am
not diagnosed with autism.
This was Kyle’s second year in the district program and, like most students with
autism, he came with quite a reputation. I tried to focus on the facts: Kyle was a
male, twelve years old, and diagnosed with autism. Eventually, Kyle moved from
under the beanbag to on top of the beanbag. I took it as a cue that he was ready for
some sort of interaction. I got down on his level, introduced myself, and tried to
connect in one way or another. He looked at me with these big green eyes, smiled,
and proceeded to attentively look around the room.
Two days had passed, and I was coming to terms with the fact that I was working
for a system that supported exclusion, isolation, and the segregation of students with
disabilities. I did not think any of my students belonged in my special day class, but I
just could not figure out why Kyle was placed in my classroom. He did not have a
physical or medical condition, which unfortunately seems to be an automatic referral
to the district program. I was not seeing any of the behaviors that I had read about in
the psychological reports or heard about from other staff. Knowing what I did about
autism, I believed that Kyle was dealing with the change in teachers and programs
better than my staff were—or even myself, for that matter. He seemed to be content
in just going with the flow.
On the third day, I was ready to throw in the towel. I was tired, frustrated,
understaffed, and trying to figure out how I was going to develop an effective and
integrative program with the bare minimum of support from the district. I had nine
students who had never been integrated into regular education classrooms, general
education teachers who had never taught students with multiple disabilities, and two
paraprofessionals who thought I was crazy for even mentioning such an idea.
Instead of taking a warm bath or drinking a much-needed cold beer, I decided to
thumb through previous student assessments, observations, and recommendations.
According to the district, the one thing these students had in common was that their

overall developmental delays impacted each student’s ability to progress in a general
education curriculum, and that he or she would benefit from a program that had a
functional curriculum. I was once again reminded that placement is often based on
disability rather than the child’s needs.
After the first week, Kyle was starting to communicate what seemed to be
boredom and the need for attention by running out of the classroom or hitting staff.
While Kyle was reaching out for attention, I was trying to meet the basic needs of my
other eight students. It was taking three hours to just feed and change the students. I
was beginning to feel like a highly qualified babysitter. I expressed my concerns to
the district. A few phone calls were made by the administration, and I was
“graciously” given a temporary paraprofessional for two weeks.
Over the weeks, Kyle started to have good days and bad days. His teeth were
starting to come in so a completely new set of behaviors began to surface. Kyle
refused to go anywhere but my classroom and the baseball field. Red flags began to
pop up in regard to integrating Kyle this school year. I knew that Kyle would be able
to learn and progress in a general education classroom, but did I have the right tools,
accommodations, and supports needed to successfully integrate Kyle?
The federal law mandates free and appropriate public education for all children
with disabilities in a least restrictive environment (a general education classroom)
with appropriate supports and services. I was beginning to realize that it was entirely
up to me to find the additional supports for my students. The supports provided by
the district were just enough to meet the basic needs of the students. I was frustrated
with the fact that I was going to have to rely on volunteers and peer tutors to
implement the law, but if that’s what I had to do in order for my students to progress
in a natural environment, then I would find a way to make it happen.
I was fortunate to have a change in staffing and receive two new
paraprofessionals who believed in the students and my overall mission of integration.
I also had an amazing support system at home and at the university that really
helped put things into perspective and remind me to take one day at a time. I began
to focus on what I did have and what resources I could draw upon to help make my
goal of integration a reality. After numerous conversations with general education
teachers and phone calls to community agencies, things were starting to happen.
With the support of two amazing paraprofessionals, a community volunteer, the site
principal, a handful of general education teachers, an intern, and peer tutors, I was
able to integrate my students into general education classes.
Kyle was the only student that I was waiting to integrate. I wanted to get
everyone else settled in their new classes so I could focus on Kyle’s integration
program. He was starting to show interest in the school environment. For example,
one day he followed me to the copy room, waited for me to make copies, and walked
with me back to the classroom. A few days later, he followed a classmate to art class
and sat outside the door.
I knew it was time for Kyle to make his way outside of my classroom, but I
needed to find a teacher and classroom environment that would support Kyle’s
sensory and security needs. Mr. Sullivan, a science teacher and my inside
connection to the general education world, once again helped me find another
incredible general education teacher. In just a few days, Kyle was set to attend a first
period language arts class with the support of a paraprofessional.
I think my paraprofessional and I were more anxious than Kyle was on the walk
over to the classroom. Our goal for the first day was to get him to the classroom,
have him sit in his seat, and then stay in the room as long as possible. Once again,

Kyle surpassed our expectations. He stayed seated the entire class period, picked up
a pencil and started to scribble on a piece of paper that a peer gave him, participated
in the class activity by choosing a color for the kimono, and did not once try to run out
of the classroom. Kyle was happier than I had ever seen him. I am not sure if it was
the natural environment of a general education classroom or the three pretty girls that
came to sit with him at his table.
To this day, Kyle has played an integral part in the development of his school
program. His unique view of the world is something that I admire and most of all
respect. We have both learned to take one day at a time and deal with the fact that
life is filled with challenges and rewards.
Regardless of the labels assigned to them, my students continue to grow as
individuals and are an essential part of the school campus. Since good teaching
means different things to different people, I am thankful to the parents, professors,
and colleagues who have positive visions for people with disabilities, thus helping to
shape my idea of what good teaching truly is—all students learning together in a
natural and inclusive environment.
Karla Zick-Curry has been an advocate of inclusive education for students with
disabilities since starting the graduate program at California State University at
Northridge in 2001. Karla completed her doctoral studies in educational leadership
with an emphasis on inclusive educational leadership. She is currently an assistant
principal in Wilmington, North Carolina.
Become More Knowledgeable About the Law
You are going to be your child’s advocate in the education system for some time.
Empower yourself with knowledge about your rights. Here are some books and
organizations that have useful information:
Know your rights regarding protection and advocacy. If you are in need of
advice, your local protection and advocacy agency can help you with
advice, or recommend an advocate. Every state has some sort of protection
and advocacy agency. Find out what publications they have available; these
are free and available online. Go to
acl.gov/Programs/AIDD/Programs/PA/Contacts.aspx to find the one in your
state.
Wrightslaw: Special Education Law by Peter W. D. Wright and Pamela
Darr Wright is an informative and helpful book for those who want to read
and understand about the laws that pertain to special education. For more
information and for updates, go to wrightslaw.com.

The Council of Parent Attorneys and Advocates (COPAA) is an
independent, nonprofit organization of attorneys, advocates, and parents,
whose primary mission is to secure educational services for children with
disabilities. You can contact them at copaa.net.
The American Bar Association is where to go to find out more about
attorneys. You can contact them at abanet.org.
U.S. Department of Education (ed.gov/nclb) is a good place to find out
about the No Children Left Behind Act.
“Building the Legacy IDEA 2004” (idea.ed.gov) explains IDEA and keeps
current with any updates on the law.
Become More Knowledgeable About Attorneys and Advocates
Hopefully, you will never need an advocate or an attorney. But if you do, there
are some things you should know. If you cannot afford to hire an attorney or
advocate, there are usually advocates available through your protection and
advocacy agency. Also, if you want to hire someone but have little discretionary
income, they can give you the names of individuals who work on a sliding scale.
Here are some tips you should keep in mind when looking for someone to
represent your child.
FOOD FOR THOUGHT
Back-to-School Tips
BY DANA PULDE, MA, BCBA
With the summer approaching its end and the start of the school year creeping in
around the corner, parents may feel a sense of relief to send their children back to
school and have the house to themselves again, but they may be sending them back
with some trepidation. Thinking about who will be responsible for teaching your child
the knowledge and skills needed to function in society is difficult enough, but having
to provide them with a meaningful life is an additional concern that parents of children

with special needs must think about. This is why it is important to prepare both
yourself and your child for their new environment. But, where to begin?
First, don’t wait for the first day of school to meet the teacher. This is one of the
most stressful days in a teacher’s life. Schedule a time to meet prior to this. Typically
teachers have a “back-to-school day” a week before school starts. If you have the
time, go and bring your child with you. Give your child an opportunity to familiarize
himself with the teacher and the classroom. This will also provide you a face-to-face
interaction with the teacher, which can be more meaningful than a phone
conversation in many ways. Take a look around the classroom.
Does this teacher consider spatial arrangements (e.g., for students in
wheelchairs)?
Are items labeled around the classroom (for students who are younger or are
in an SDC classroom)?
As a parent, what you should be looking for are the accommodations that your
child specifically needs. If your child is a visual learner, make sure the teacher has
visual reminders around the room and/or a visual schedule on your child’s desk. If
your child is deaf and hard of hearing or has difficulty with attention/focus, make sure
her desk is in the front of the room.
It is important to note that if your child requires the use of large-font textbooks
(for the visually impaired) or assistive technology such as specific computer
programs and voice output devices that are written into your child’s IEP, make sure to
discuss this with the teacher at the end of the previous school year as it takes time
for orders to arrive.
What I have found to be one of the key elements to a child’s success is creating
a positive and supportive space for them, both at home and at school. Though it is
the teacher’s responsibility to create this place for their students at school, the
parents actually play a significant role in this. Building rapport with your child’s
teacher creates a collaborative and cohesive environment that promotes growth and
helps foster independence. Having such a relationship will also ensure your
involvement in your child’s education. When a teacher feels threatened by a parent,
her relationship with that parent is harmed, which in turn affects the child. You are the
expert on your child, which is why your involvement is essential to your child’s
success. The relationship with your child’s teacher is reciprocal. Just as they need
you to provide them with information about your child, you need them to provide you
with educational strategies to use in your home. When you have established a
positive relationship with your child’s teacher, you may find many teachers who are
willing to extend themselves in ways that will help you and your family. Many
teachers, for example, will duplicate materials so that you have an extra set at home
and may often be willing to travel to your home to provide training on how to
implement the use of such materials and strategies. This is a valuable resource that I
recommend all parents take advantage of when possible.
Most important, remember to take a deep breath and relax. Your child will be in
good hands as long as they have you in their lives.
Dana Pulde, MA, is an education specialist and private consultant who has been
working in special education for ten years. She has taught students in verbal

behavior–based classrooms and has completed her BCBA supervisory hours. Dana
has worked as an instructional aide, a behavioral tutor, and a teacher in a
moderate/severe classroom in both non-public and public school settings.
First, know the difference between an attorney and an advocate:
An attorney has passed a state bar exam and holds an active State Bar card.
A practicing attorney must stay current with the law. There is no national
standard for advocates and in reality anyone can call himself or herself an
advocate. However, there are many excellent advocates.
Fees paid to an attorney may be reimbursed in the event that you should
win a due process. Advocate fees are never reimbursed. Before hiring an
attorney or advocate, talk to parents who have used his or her services and
ask:
Are they happy with the results? Do they feel they obtained what
their child needs and should have under the law?
What style does the professional have? Look at what your needs are
and analyze the type of person you wish to represent you. For
example, is he warm and fuzzy or is he a hired gun? You need to
feel comfortable with the person. Speaking from experience, at this
point in the game you are looking for someone to be effective in
getting what your child needs. If you need support, see a therapist.
Find out more about the attorney or advocate by talking to them over the
phone, or if they are very busy and in much demand, ask their office staff to get
back to you about any questions you may have, such as:
What percentage of cases handled by the professional are resolved in
mediation? This will tell you about their ability to negotiate and how
successful they are in avoiding going to fair hearing.
How many cases have they handled that are similar to yours, or in your
school district, and what is their success rate for those cases? This person

may have much experience, but it could be more with learning disabled
children and/or in another school district.
What are the hourly rates, what estimate is there for this kind of case, how
much is the retainer, and how is billing handled?
If you are leaning toward hiring an advocate, you need to ask these
questions:
Does the advocate have an attorney to refer you to if necessary? This is
important, because if you are unable to come to agreement with the school
district and decide to file for due process, you will most likely need an
attorney, and your advocate will be able to easily hand the case over to one.
Also, if the advocate has any legal questions she is unsure of, she has
someone to check with who will guide her.
How much training has she had in special education law, and how much
experience with your type of situation and in your school district?
Is the advocate a member of the Council of Parent Attorneys and Advocates
(COPAA) (copaa.net), and does she attend conferences regularly to keep up
with the changes in law?
If your state department of education publishes due process cases online,
then you can do a search of the history of the attorney or advocate you are
leaning toward hiring to see their history with that agency.
Keep in mind that once an attorney or advocate has done their thing for you,
and the IEP has been worked out and signed, you will be the one left to do the
monitoring. You will need to do some relationship building with the school staff.
Educators: Teaching the Child or Adolescent with ASD
Whether you teach a special or general education class, or in a resource center,
you will have students with ASD in your class. This section is written
particularly for those who work in education; however, parents will find this
section informative as well. Some resources are mentioned here, many more are

listed in the Resources section.
As indicated earlier in this book, the incidence of ASD is rising and they are
not going away. Perhaps you already have a lot of practical experience or
knowledge of the best teaching strategies for children with autism, and you work
for a school district that is supportive of your need and desire for specialist
support or access to knowledge in order for you to use strategies proven to be
effective with children with ASD. If so, hurrah!
FOOD FOR THOUGHT
Be Precise
For any classroom assistants or teachers reading this, then please, please try to
realize that instinctively knowing where to go or who to talk to, and what to do next
just isn’t possible for a kid on the autism spectrum. If a teacher says “now get out
your books and turn to page 10” and doesn’t say “and now start answering those
questions,” then the AS kid is not likely to know, so to tell them off for doing no work
that lesson, is unfair.
—Luke Jackson, Freaks, Geeks, and Asperger Syndrome
However, not all school districts or schools give the same level of access to
autism expertise or specialist support. Young teachers fresh out of college may
not be aware of the politics of education, and some administrators will convince
them they know enough to run a class and teach the children with little or no
behavioral support or autism-specific training. There are also teachers who do
not understand that students with ASD are differently wired; who don’t
understand that they need to learn specific strategies to be effective with students
with ASD; or who have difficulty being flexible enough to accommodate the
needs of these students. Nonetheless, most educators, by the nature of their
chosen field, recognize that you can never stop learning or have too much
knowledge.

The Basics Everyone Working at Any School Needs to Know
Presume competence. Remember, every child is different, and every child
deserves the same respect, whether they are nonverbal and appear severely
handicapped by their autism or very able with idiosyncratic behaviors. Just
because someone is unable to talk doesn’t mean he doesn’t understand what is
going on around him. That student’s challenge could be in the output, not in
understanding what he hears. There are many written reports by students who
are nonverbal that demonstrate their capability. On the other hand, just because
someone is verbal doesn’t mean he understands more than the literal sense of
what you are saying. Assumptions about a child’s intelligence cannot be made
because of his lack of communication or social skills.
ASD is unlike any other disability. Some children with ASD do not have
imitation skills. Imitation is how most people learn. Many children with mental
retardation or learning disabilities have imitation skills and are social. They may
pick up social behaviors and language “naturally” by being put in a class of their
peers. This is not true for the most part for children with ASD. Many have a
good academic understanding of social skills but are not able to apply them.
They need to be taught how to apply, in everyday situations, the social skills that
most of us take for granted. The challenges that people with ASD have are due
in part to different wiring in the brain. They are not just being “difficult.”
Obviously, there are different ability levels in children with ASD, but regardless,
all have problems with social skills, communication, and understanding more
than the literal meaning of words.
ASD-specific training is necessary. It does not matter how many years you
have been teaching developmentally delayed children, or how many children
with ASD you have seen in your class, you need to learn more. It is relatively
recent that the results of effective teaching methodologies and strategies are
being seen and recognized. Currently these strategies are still being developed or
refined or built upon. Your special education administrator and school district
needs to be convinced of the need for specialist training and support. This is true
no matter what type of school you are working in, no matter the level of
disability or ability.
Teaching assistants and all staff working with the child need to be
trained. A person who does not have the skills to do the job properly will not be
an effective person to have around. Giving people the right skills to do their jobs
will make them effective, confident, and provide more job satisfaction, which

makes for a low employee turnover rate. And that is always a good thing.
Peers need to be informed about disabilities and taught tolerance. Peers
need to be given information so that they understand why people are different
and why they act the way they do. This is true for all disabilities, not just ASD.
However, autism is an “invisible” disability, as you can’t see it and the person
may act neurotypical in most ways. Peers need to be told that they will benefit
from having students with differences like their classmates. If there is concern
about “labeling” on the part of the parent or the student, it is possible to talk
about the issues without naming the disability. For example, peers could learn
about how “social communication” is a challenge for some. Just as the student
with ASD is learning new appropriate ways of behaving, the peers need to learn
to be more accepting of the differences in others. If they don’t learn this at
school while they are young, how will they learn to be tolerant and responsible
members of society? A good resource is the book My Friend with Autism by
Beverly Bishop.
Use the student’s strengths and special interests to teach him. Many
students have a passion for a particular object or topic. Instead of trying to rid
him of this “obsession,” use this interest to teach. For example, if a student is
passionate about trains, you can teach color, numbers, distance, time, math,
geography, and history all by using trains as examples. This will motivate them
to learn. This passion can be used to help them connect with their peers, and may
later translate into a job or career. For example, as a young child, Stephen Shore
(now a college professor and author) used to take watches apart and put them
back together at home. This was translated into a job repairing bicycles while he
was a student in high school and college.
FOOD FOR THOUGHT
On Being Bullied
Another reason I think I have been bullied in the past and am prone to being picked
on is that I just don’t want to “run with the pack.” I never have and never will. I don’t
see any point in pretending that I like things when I don’t. I think this is one of the
reasons why other people don’t want to make friends with me or hang around with
me.

—Luke Jackson, Freaks, Geeks, and Asperger Syndrome
Peer tutors are a great resource. Often schools include peer tutors to help
teach the child. This is a wonderful idea; however, for this to be successful, the
peer tutors need to be appropriately trained. Peers may be used to
developmentally disabled individuals who are social but not used to the lack of
automatic social interaction and apparent lack of emotion shown by some
children with autism, and may be discouraged. For peer tutors to be successful,
they need to have an understanding about autism and some knowledge in helpful
prompting strategies.
Inclusion and mainstreaming done correctly are important. All students
need access to typical peers and inclusion in general education classrooms. This
is how they will make friends, and how their peers will learn to be accepting of
those with differences. However, inclusion requires support and planning to be
successful. Paula Kluth’s website and books are a great resource
(paulakluth.com).
FOOD FOR THOUGHT
The Educational Environment
There are many things that people with “autism” often seek to avoid: external control,
disorder, chaos, noise, bright light, touch, involvement, being affected emotionally,
being looked at or made to look. Unfortunately, most educational environments are all
about the very things that are the strongest sources of aversion.
—Donna Williams, Autism: An Inside-Out Approach

Providing opportunities to learn life skills is necessary. Life skills need to
be taught at school as well as academics. Communication, social relationships,
advocacy, and self-regulation are some of the important life skills that need to be
taught at school before the student enters the adult world. My book Autism Life
Skills: From Communication and Safety to Self-Esteem and More—10 Essential
Abilities Every Child Needs and Deserves to Learn provides a good overview
and some resources.
The principal sets the tone. Tolerance and flexibility are key words that
should be practiced in every school toward any student who is “different.”
Principals should show by their own actions and attitude that bullying by other
students will not be accepted and that staff are expected to be flexible to meet the
needs of these children.
Communicating with parents is very important. Keeping lines of
communication open with the parents can help alleviate a lot of stress at both
ends. Many parents are willing to follow any suggestions you may have to help
their child. Any behavior plan should be explained to parents so they can enforce
them at home as well. Parents, out of necessity, have become more and more
knowledgeable about their children’s disabilities and can give you information
on ASD and their children that can be useful to you.
Must-Reads for Teaching Staff, Principals, and Special Education
Administrators
There are many helpful books on autism for teachers, addressing a specific
educational or social challenge. Below are a few general books to start with.
Although these books were written with those on the more able end of the
spectrum in mind, the information can be helpful for understanding autism in
general and can help generate ideas for others.
Although it was published twelve years ago, this book still remains an
essential text for anyone working in education: Freaks, Geeks, and
Asperger Syndrome: A User Guide to Adolescence by Luke Jackson. It
describes what it is like to be a child or teenager with ASD, from one
person’s perspective, attending a school where the staff and other students
have no understanding of this “invisible disability.” There are specific
examples of how someone who is academically very capable can only
understand the literal meaning of words unless taught otherwise, and needs

to be taught social skills to be able to act normally in a neurotypical world.
This book also shows us, sadly, how youngsters with ASD are routinely
bullied by their peers as well as misunderstood by unknowledgeable
teaching staff. This alone should put the book at the top of all school
educators’ and principals’ reading lists.
Another gold standard is Asperger Syndrome and Adolescence: Practical
Solutions for School Success by Brenda Smith Myles and Diane Adreon.
This has a detailed discussion of strategies and supports necessary to ensure
a successful school experience for students with AS at the middle and high
school levels.
Asperger Syndrome and the Elementary School Experience: Practical
Solutions for Academic and Social Difficulties by Susan Thompson Moore,
MEd. This has many practical ideas for addressing the social and academic
needs of elementary-aged children with Asperger’s syndrome.
A new video series Understanding Autism: A Guide for Secondary School
Teachers is available on the website of the Organization for Autism
Research, researchautism.org/resources/teachersdvd.asp.
Specific Challenges of Students with ASD
Bullying. Bullying is a major problem for students with ASD. It is apparent in
elementary school, but becomes a significant problem in secondary school.
Bullying, which can range from verbal taunts to actual physical encounters,
is very upsetting to the victims and should not be treated as a fact of life.
A 2012 study done on behalf of the U.S. Department of Education found that
46.3 percent—or nearly half—of teenagers with ASD receiving special
education services are victims of bullying, while 14.8 percent engaged in
bullying behavior themselves, and another 8.9 percent were both victims and
perpetrators.
Rudy Simone, Jerry and Mary Newport, Luke Jackson, and Jesse A.
Saperstein (all authors with ASD) discuss bullying in their respective books at
some length. Luke Jackson writes about how he was chased and pinched,
shoved, and hit many times. He also describes having personal school items such
as rulers and pencils taken from him, having his lunch grabbed and stepped on,

and doors being slammed in his face. More distressing are his stories about
teachers making fun of his difficulties and calling him names such as “thick” or
“dopey” in front of the class.
Bullying occurs for a number of reasons. It can happen simply because the
teenager with ASD appears different to the neurotypical teens because of his
dress and grooming. Often it is because as the other teenagers start to question
authority, the ASD teen is still in the mentality of following the rules and thus
seems to be “nerdy.” Sometimes bullying is due to the misinterpreted behavior of
the ASD teen. Many children with ASD have monotone voices, and sound rude
or as if they are mimicking the person they are speaking to, which makes it
appear as if they are poking fun. Many children with autism have mind-
blindness; they do not realize that others have different thoughts from theirs, and
so they are unable to anticipate what others may say or do, which creates
problems in social behavior and communication. As mentioned before, some of
the bullying comes from teachers who are uninformed about ASD. It is hard for
teachers and other students to comprehend that someone who is verbally astute
and gets good grades for his work is unable to pick up all the nonverbal cues
most people take for granted.
A teenager with ASD may give the appearance of being “sneaky” or
“manipulative” because of some of his body language when stressed (avoiding
eye contact, shifting from foot to foot, speaking in a flat voice). The teen with
ASD, usually a stickler for rules, may correct another student or tell off a child
who is breaking a rule, thus enraging the teacher, who does not realize that the
teen has no sense of hierarchy, only a sense of what is right. If a person with
ASD has good language skills, others tend to forget that his comprehension of
the language is different—that he only has a literal understanding of language,
which can lead to trouble.
In any case, the school is responsible for ensuring that bullying or
harassment does not continue, and this requires long-term monitoring. There is
no federal law that applies to bullying in general, but when bullying is based on
race, color, national origin, sex, disability, or religion, it overlaps with
harassment—and it becomes a civil rights issue, and thus the schools are legally
obligated to address it.
Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans
with Disabilities Act require that all schools have a prompt reporting system for
grievances for individuals with disabilities, according to the Office of Civil
Rights (OCR). The protection of Section 504 or Title II applies regardless of

whether a complaint has been made by a student; the school must take action.
According to U.S. Secretary of Education Arne Duncan, bullying is now
recognized as a school safety issue, and it affects the entire school and must be
addressed by school personnel. For more information and resources, visit
stopbullying.gov.
FOOD FOR THOUGHT
Teaching Tips from Temple Grandin
As mentioned earlier, Temple Grandin is a woman with autism who has a successful
international career designing livestock equipment, and she is a world-renowned
speaker on the condition. The following is her advice on what can help people with
ASD to learn, based on what was effective for her and information she has
accumulated over the years about what has worked for others:
Intensive and early intervention is very important.
Having the right kind of teacher is more important than what kind of program
you are doing. The teacher needs to be structured and clear in what is being
requested and what the correct response is.
Talents and special interests can be used to motivate a child to work and learn,
and as he reaches adulthood it can be transitioned into a line of work. For
example, if a child likes trains and is studying math, ask him to calculate how
long it takes to go from New York to Boston by train.
Some people cannot process visual and auditory input at the same time. Their
sensory processing system cannot process visual and auditory input
simultaneously. These individuals should only be given either an auditory or a
visual task.
Having rooms that are quiet and have low distracters is important. Carpeting on
the floor is good for noise absorption. Fluorescent lighting is terrible for many
people with autism. Having a lamp at each desk with an incandescent lightbulb
is better.
Children who are echolalic and repeat commercials or jingles do so because
they are hearing it in the same tone each time and that makes it easier for
them to learn. Be thrilled the child is echolalic. You can teach this person by
using flashcards with both the picture and the word on the card, and saying the
word in the same tone to begin with. When the child has learned the word in
one tone, then teach it using a different tone. Teach nouns first. For verbs and

other words, illustrate the action by modeling (e.g., jump while saying “jump,” or
make a plane take off from the desk to teach “up” and also visually show the
word going up) or by having the word look like the action (e.g., write “falling” as
if it were falling).
Some people with auditory processing issues cannot “hear” consonants, and
therefore cannot reproduce them verbally. Overemphasizing consonants when
teaching words is necessary for them to hear and reproduce them.
Some individuals respond better if words or sentences are sung to them.
People with sensitive hearing will respond better to being spoken to in a low
whisper.
Laptops and the new flat-monitor computers are better for people who have
visual processing problems, as some individuals are distracted by the flicker of
the screen.
For people who like to rock, sitting on a therapy ball or a T-stool (made from
two pieces of wood nailed together like a T), which the person balances on,
can be helpful.
A 2012 study found that school-based bullying interventions need to include
skill training for both the student on the spectrum and for neurotypical peers.
Students with autism needed to improve on conversational ability and social
skills as well as any other conditions (e.g., attention-deficit/hyperactivity
disorder). Other bullying interventions that are needed include increasing the
empathy and social skills of typically developing students toward their peers
with ASD, and increasing social integration into protective peer groups.
These books are helpful for teaching a more able student on the spectrum
skills to navigate the social landscape:
and Ronda L. Schelvan. This book offers practical ideas on how to teach
and learn those subtle messages that most neurotypical people pick up
almost automatically and take for granted, but that have to be specifically
taught to most individuals with ASD. The strategies and detailed lists of
curriculum items is very useful.
Asperger Dictionary of Everyday Expressions by Ian Stuart-Hamilton can
help those with Asperger’s syndrome who “take things literally” to

understand the meaning of expressions the rest of us use. The guide
provides explanations of over five thousand idiomatic expressions plus a
guide to their politeness level. Parents and teachers will find this a helpful
tool to help teach and explain social communication.
Sensory processing challenges. When interviewed for my book, Autism
Life Skills, most of the adults on different parts of the spectrum stated that their
main challenge in school was making sense of what was going on. Most people
with ASD suffer from sensory processing issues, which is mainly why they have
difficulty with transitions and need schedules so they can anticipate what is
going to happen next. They may easily experience sensory overload, which can
lead to meltdowns. Sensory processing can affect learning, as some students
have challenges in their auditory processing, some in visual, and some in both.
This is also important in understanding how the learning material should be
presented to the student. For more information, see “Teaching Tips from Temple
Grandin” on page 236. If your student appears not to be learning consistently,
consider the need of having the student’s vision processing and/or auditory
processing checked. This is different from a routine hearing or vision exam. For
more information, go to nidcd.nih.gov/health/voice/auditory.html and
visionhelp.com.
Social situations. Social situations are usually a challenging area for a child
or teen with ASD. If a child or teenager with ASD prefers to spend time alone,
parents and teachers need to respect that. However, some social skills are called
for, because we all live in society and have to deal with people at one time or
another. All children, no matter the age or ability level, need to learn some social
skills. School resembles a mini society and it is one of the first places where
people learn how to interact with other people. In the next section some
strategies and resources will be discussed.
Safety. Most children with ASD have no notion of safety. This is an area
often overlooked yet vitally important, and can range from not understanding the
dangers of traffic or fire to not understanding the possibility of personal danger
from strangers or aggressive individuals. More attention is being paid to teaching
emergency responders about autism, which is a positive move; resources
addressing this issue are listed on page 276. However, the child needs to learn
some safety notions, and educators as well as parents must work with the child
on these.
Transitions. Transitions are another challenging area for students with ASD.

Whether transitioning from one school to another, one teacher to another, or one
classroom to another, it needs to be prepared for. “No surprises” is a rule to live
by, as is “Always tell them what is going to happen next.” Usually in elementary
schools, the children are in the same classroom with the same teacher for most of
the day. In secondary school, the teenager has to deal not only with different
teachers, but also with moving around to different classrooms. For some
individuals with spatial difficulties, this is an added stress. Picture or word
schedules can help in this area.
The section “For Problems with Finding Your Way Around” on pages 313–
314 gives suggestions for how to enable students to move around from class to
class. Transition from one school to another needs to be carefully prepared. One
way of doing this is through social stories (see pages 124–125); another way is
through creating a scrapbook with pictures and descriptions of what will happen
so the student can go over it (such as in the tips for traveling on pages 147–150).
These can also be created on iPads and iPhones using apps. Teachers who are
going to have the student in their class need to be prepared. Information can be
given to them about the student, and the student could have a picture and a
description of the teacher for his scrapbook or phone and tablet.
Flexibility. Flexibility is a real challenge since those on the spectrum usually
do not like change. One way of teaching students flexibility, once they are used
to a schedule and know the routine, is to add at the bottom of their schedule
“Sometimes the schedule changes.” Then when there is a change in schedule
(i.e., due to an assembly), give them notice by making a “Change of routine”
card with specific details about the change in time and so on. Prepare this as far
in advance as possible. At first they will be anxious about it, but eventually they
will recognize that they survive these changes and they will need less and less
advance notice.
Girls on the autism spectrum. As described in Chapter 6, there are
differences between boys and girls on the spectrum. Girls have areas of strength
that can mask their deficits. Often they display characteristics that make a
diagnosis of autism difficult. Please read the section beginning on page 163 to
understand more about girls and to learn about available resources.
Adolescent issues. Adolescence is a difficult time of life for most people.
Hormone levels start flaring, the body changes in weird yet wonderful ways, and
teenagers are in a state of flux. Puberty, hygiene, sexuality, dating, and social
skills are areas that create special challenges for the adolescent with ASD.
Adolescent issues are discussed in more detail in the previous chapter (starting

on page 152), which should be consulted by teaching staff, as these areas affect
school life. For more in-depth information, read my book Adolescents on the
Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, and
Transition Needs of Teenagers with Autism Spectrum Disorders. Online training
on adolescence and autism is available on autismcollege.com.
In elementary school, the student usually had one main teacher, and that
teacher had to be able to recognize the warning signs of a possible meltdown,
and how to defuse it. However, in secondary school, there are many different
teachers. If the teachers do not all recognize when a student is nearing
meltdown, then more tantrums and unfortunate incidents may occur.
Arranging for a quiet place where the student can go to calm down if he
feels overloaded, stressed, or confused is very helpful. School staff should seek
advice from experts knowledgeable about ASD and put effective strategies in
place as a preventative measure, rather than waiting for a major incident or crisis
to occur.
Learning More About Educational Strategies
How does a teacher go about learning more? If you are not getting adequate
information about ASD-specific training and conferences from your school
district, there is still hope; resources are out there. Look on the websites of the
national autism nonprofit organizations listed in this book. Join local chapters of
these associations and get on their mailing lists. Read their newsletters and find
out about workshops and conferences and when they are being held. Contact the
organizations or companies that offer information and training on certain
techniques you want to know about (such as PECS, ABA, and social
relationships).
Presented here is a condensed version of some effective educational
strategies. This is by no means an exhaustive list, but rather suggestions based
on what is known to be most effective and practical. For more information on
certain techniques, look at Chapter 5 as well as the Resources section.
Applied behavior analysis (ABA). Regardless of what kind of school you
work at or ASD ability level you teach, all teaching staff should have a working
knowledge of ABA. It is the cornerstone of all effective teaching techniques for
people with ASD and, for that matter, all students.
Most people think of O. Ivar Lovaas when they think of ABA, but while

Lovaas developed a particular intensive teaching program for young children,
ABA has been around for many years and is useful in all contexts. In fact,
twenty-five years ago, before Lovaas was known to the world at large, the author
was trained to use some aspects of ABA, such as task analysis, prompting,
shaping, and rewarding, in order to teach developmentally disabled adolescents
at a state hospital.
ABA techniques can be used with all types of students, not just those with
ASD. For example, plans can be drawn up for unruly students to teach them
appropriate behaviors, and students with cognitive disabilities can have
academic skills broken down into smaller teachable steps. So ABA is a good
general method that all teaching staff should learn that would be useful in all
aspects of their work, regardless of the student population they are teaching.
Specifically, ABA techniques such as task analysis and discrete trial teaching
can be adapted to teach academic skills, life skills, communication, anger
management, and so on. Many of the effective techniques for students with ASD
(such as PECS, social skills training, and TEACCH) are based on or use some
behavior principles. If you know basic ABA, you will be more effective in
applying these other strategies and with practice will be able to adapt techniques
and curriculum for all types of children.
Keep in mind that students with autism do not intuitively generalize. Skills
that are learned in one environment may need to be retaught in another. This is
important to remember when changing schools, teachers, or aides. It is best to
change one variable at a time (such as a new classroom teacher, but the same
aide) than to change all at once.
A good introductory guide to ABA is Understanding Applied Behavior
Analysis: An Introduction to ABA for Parents, Teachers, and Other Professionals
by Albert J. Kearney. It explains the basic terminology and underlying
principles, as well as the commonly used procedures in an accessible manner.
Behavior plans. Behavior plans that are clear, precise, fair, and written
down are necessary to address inappropriate behaviors and replace them with
appropriate ones. Bad behavior will not just go away. Students with autism need
a systematic way of understanding how to behave appropriately. Consistency is
necessary for behavior plans to be effective. They can be drawn up to encourage
or eliminate specific behaviors, once the behaviors have been analyzed and the
antecedents identified. It is important that anyone working with a student knows
what the behavior plans are in order for them to be effective.
It’s important to do a Functional Behavioral Assessment—a process of

figuring out why a student is behaving in a certain manner—before creating a
behavior plan. For example, if you have a student who is kicking the back of
someone’s chair in the classroom every day, you will analyze why he is kicking
the chair, and then you will teach him an alternative appropriate behavior.
Perhaps he is kicking the chair because he can’t stand the sound of the squeak
every time the student moves. He needs to learn to appropriately tell someone,
and then the squeak will be fixed. However, if it is discovered that chair-kicking
is one of many behaviors he is exhibiting because he has anger management
issues, you will use ABA techniques and teach him to express his anger in an
appropriate manner. The student will have counseling sessions about why he is
angry and what can be done about it. But he still needs to learn in a clear,
concise, on-the-spot way which behavior has to stop and what can replace it.
Picture exchange communication system (PECS). For nonverbal children,
PECS is very useful. It immediately teaches the child a basic system of
communication, and it can convey many academic concepts too. This method is
wonderful for small children, but even nonverbal adults who have never
developed a communication system can learn to use it. Visit pecsusa.com.
The TEACCH approach. Developed at the University of North Carolina,
Structured TEACCHing is based on understanding how individuals with autism
learn and the use of visual supports to provide meaning and promote
independence. Structured TEACCHing emphasizes a classroom environment
that is highly structured and predictable, including the use of schedules. For
more information, read The TEACCH Approach to Autism Spectrum Disorders
by Gary B. Mesibov and visit teacch.com.
Schedules. Schedules and structure are necessary for students with ASD.
Clarity and precision are the key words. Schedules can be pictures or words,
simple or complex, depending on the student’s need. For some ideas on creating
schedules, read handsinautism.org/pdf/How_To_Visual_Schedules.pdf. There
are many scheduling apps for the iPad and iPhone as well. A good one is the
First Then Visual Schedule app.
Social skills training. Because of the impairment of social skills that people
with ASD have, it is very important to teach these. People with ASD don’t pick
up these skills by rubbing elbows with their peers. They need to be taught
systematically. For a more able autistic child included in mainstream classes, this
is an area where a lot of support will be needed. Teaching the student some
social skills can help him avoid some of the bullying he may be prone to as a
result of not knowing what neurotypicals expect in terms of behavior. Again,

strategies can be geared toward various ability levels. Social stories can be
developed with the student. Social skills groups teach social skills by breaking
them down and providing practice in a safe environment. Forming a “circle of
friends” has been found to be effective. See Chapter 5 for a more complete
description of the different methods.
Self-esteem training. Working on self-esteem is a necessary component of
education for children and adolescents with ASD. They need to learn about
ASD, the challenges as well as the strengths. Reading to them about the positive
attributes of those with autism and highlighting well-known individuals who
have autism can be helpful. A good workbook is I Am Special: A Workbook to
Help Children, Teens, and Adults with Autism Spectrum Disorders to Understand
Their Diagnosis, Gain Confidence, and Thrive, 2nd edition, by Peter Vermeulen.
Safety training. This is an area that often falls through the cracks and
should be addressed. Whether it is knowing to look both ways before crossing
the street or who to approach if you are lost at the mall, or recognizing certain
dangerous situations or what to do in a fire, safety needs to be taught.
Some good resources to check out include autismsafety.org and
autismspeaks.org/family-services/autismsafety-project.
Preparing for Life After High School: Transition to College or Work
Just as for any other student, plans have to be made for the future. During
adolescence, the student and parents should begin to think about the future. It is
useful to have discussions with the student, family members, and other people
who have gotten to know your teenager over the years to get input and ideas. Of
course, the most important aspect to consider is what your student’s likes and
dislikes are. Temple Grandin suggests taking a good look at any interests and
obsessions he may have and seeing if they can develop into a skill that can be
useful and enjoyable for after school.
Some other areas to be explored besides the student’s interests include what
he is capable of doing and what level of support he needs for his life as an adult
in terms of living arrangements and finances. Does your teenager want to go to
college, get vocational training, or go right into employment? Does he have a
support system of friends in the community?
My son and I have provided much information about the transition to adult
life in A Full Life with Autism, and you may wish to read this.

Regardless of the youth’s ability level, there are some life skills that must be
taught. How they are taught and to what extent may depend on the ability level
of the youth, but all can learn to some extent. The earlier the students start to
learn these skills, the better, but at least by high school these need to be
addressed. Essential life skills include self-regulation, self-advocacy, appropriate
behavior in public, social relationships, and organizational skills.
FOOD FOR THOUGHT
A Meaningful Life
There is so much more to the life of an autistic than just being on SSI and safely
tucked away at home, sheltered from the world. That is minimal existence, and I
know from my conversations with people with autism and Asperger’s that many of
you want more than that out of life. You would like to make some money, hopefully
doing something you enjoy. I’m here to tell you that it’s possible to be gainfully
employed, but to accomplish this, you need (1) an idea of what you would like to do,
(2) some sense of the availability of jobs in that area, and (3) an appropriate
education that will prepare you for working in that field.
—Mary Newport, “Education and Jobworthiness,” in Autism Asperger’s Digest
Magazine, Sept./Oct. 2002
A word of caution is in order here. It is important for parents and educators
to realize the importance of learning life skills while the student is still under the
auspices of IDEA. Once the student leaves high school and the transition
program, they may be eligible for adult services. However, adult services are not
mandated and they may end up on a long waiting list. The student’s school years
under IDEA may be their last opportunity to receive training. Thus, the
importance of preparing them while still in school is critical.
Regardless of the ability level of the individual, the person’s own choice
should be taken into account. Obviously for the less able and nonverbal it is
harder to get an idea of his wishes. Sometimes the opinions or ideas of people
that know him in different aspects of his life can help in making choices through
person-centered planning. The person at the focus of planning, and those who

love the person and know him well, are the primary authorities on the person’s
life direction. In person-centered planning, questions are asked about who the
person is, and what community opportunities will enable this person to pursue
his or her interests in a positive way. Some of the techniques used are individual
service design, lifestyle planning, personal futures planning, MAPS, PATH, and
essential lifestyle planning. For more information, see the resources at Inclusion
Press, inclusion.com.
FOOD FOR THOUGHT
More on the Politics of Education
For six years, I served in a voluntary capacity on a state-mandated community
advisory committee made up of parents, educators, and administrators. For two of
those years I sat on the executive board. Our mandate was to give input and advice
to the special education directors and school superintendents of the fourteen
member school districts, who were obliged by law to listen to, but not necessarily to
follow, our recommendations.
One of our most important tasks was to draft a list of priorities for special
education in the districts for the coming year. The administrators would look at the
priorities and address these areas of concern, then report back to the community
advisory committee about what they had done to address those concerns.
One year, a major concern drafted into a priority was about the exodus of
qualified special education staff. Our suggestion was that each school district develop
and implement strategies to attract and retain competent staff. At the end of the year,
we sent a questionnaire to the directors of special education to ask them what
strategies they had come up with. One special education director actually wrote back
to say that he had done nothing, because staff left because of the parents. This reply
begged the question, “What are the parents doing that makes staff leave?” Here are
some possible answers:
The parents were expecting their child to learn. For some reason, there
appears to be an assumption by some school administrators about severely
handicapped children: As long as the child is happy and loved, and goes home
with his nose clean and his pants dry, the school has done its job. Often, good
teachers who want to teach this population recognize when there is a lack of
support from above and leave to go to work in a more supportive environment
(possibly a neighboring school district).
The parents were expecting that staff would demonstrate a knowledge of
teaching methods and behavioral strategies that were proven to be effective

with that child. Often teachers’ aides are thrown into classrooms with
insufficient (if any) training or knowledge. This is detrimental to the child and
the teacher who is running the class, and also to the teacher’s aide herself. If
people do not have the skills to effectively do their job, they will eventually be
unhappy and leave.
The parents were expecting that the general education teacher would be given
some information about their child and his learning methods. Inclusion will not
work if support is not given to help the teacher. Teachers need to be given the
tools and training to do their job; they cannot be expected to be knowledgeable
in all strategies simply through osmosis.
Many school administrators like to play the game of convincing the staff that the
parents are too demanding. People in a position of power will convince staff that yes,
they can do the job, they don’t need specialist support or to learn new educational
strategies. Then the parent is put in the uncomfortable position of explaining why the
teacher (or other school professional) is not able to provide for the child’s educational
needs. The administrators pit the parents and the teachers against each other, when
in reality they should be partners. If you are the only proactive parent in that class,
then you also get the reputation of wanting “special treatment” for your child.
However, the way the process works, you can only address your child’s program, not
the whole class. In essence, by requesting that a staff member be properly trained,
you are helping the whole class, and smart teachers will recognize this.
The reauthorization of IDEA in 2004 strengthened the requirements for
transition planning and some activities begin at age fourteen, and others at age
sixteen.
A transition plan should form part of the first annual review at the latest after
the child’s sixteenth birthday, and any subsequent annual review. The purpose of
the plan is to gather information from the parents, as well as a variety of
individuals at the school and different agencies, in order to plan for the
teenager’s transition to adult life.
Transition services need to be planned, and these are intended to be a
coordinated set of activities for a student to move from school to post-school
activities. These transition services need to be developed and written up as an
individualized transition plan (ITP), which is a part of the IEP, or it can be a
separate (but agreed upon by the team) document. Because the goal is to
transition to adult life, interagency collaboration with whatever local services
exist is an important part of the transition IEP. Agencies that may be involved
include the Social Security Administration (SSA) and the local Department of
Rehabilitation.

A good way for a more able teenager to get some ideas is to do volunteer
work or have a part-time job during the summer or on weekends. Parents can
help by giving chores to their child to teach a sense of responsibility (no matter
the ability level). Finding and providing mentors to help the teen develop any
interests into marketable skills is helpful.
According to a 2012 study by Paul T. Shattuck, PhD, et al., youth on the
autism spectrum have low education and employment outcomes upon leaving
high school, especially in the first two years after leaving school. In the study,
Shattuck found that:
Fewer than 50 percent had no participation in employment or education in
the first two years out of high school.
55.1 percent had paid employment during the first six years after high
school.
34.7 percent had attended college.
Compared to youths with other disabilities, youths with ASD had the lowest
rates of participation in employment, and the highest rates of
nonparticipation.
Those with a higher functioning ability and those from higher income
families were more likely to participate in school or paid work.
According to the researcher, these results indicate that better transition
planning is needed. Here are good places to go for more information on planning
for transitions:
Life Journey Through Autism: A Guide for Transition to Adulthood by Danya
International Inc. and the Organization for Autism Research (OAR), free
at researchautism.org/resources/reading/#Transition
A Full Life with Autism: From Learning to Forming Relationships to
Achieving Independence by Chantal and Jeremy Sicile-Kira
Talents: Careers for Individuals with Asperger Syndrome and High-
Functioning Autism by Temple Grandin and Kate Duffy

Autism and the Transition to Adulthood: Success Beyond the Classroom by
Paul Wehman, Marcia Datlow Smith, and Carol Schall
The Integrated Self-Advocacy ISA Curriculum: A Program for Emerging
Self-Advocates with Autism and Other Conditions by Valerie Paradiz,
PhD
Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive,
Social, Physical, and Transition Needs of Teenagers with Autism
Spectrum Disorders by Chantal Sicile-Kira
Autism Life Skills: From Communication and Safety to Self-Esteem and
More—10 Essential Abilities Every Child Needs and Deserves to Learn
by Chantal Sicile-Kira
FOOD FOR THOUGHT
It’s Getting Easier
More than thirty years ago I worked with adults with severe autism and other
developmental disabilities living in a state hospital. Some of these individuals were
going to be deinstitutionalized and live in group homes. My task was to help them
learn self-help and community living skills, including how to act in public. Along with
other staff, I would take them out to restaurants and teach them safety skills such as
how to cross the street. Currently, with my own son, I am faced again with trying to
figure out how to find programs and activities that my son will enjoy, as well as finding
ways to teach him community living skills. It is not an easy task, but definitely not the
challenge that it was decades ago.
Successful people who have ASD, such as Temple Grandin, Stephen Shore,
and Liane Holliday Willey, have good, useful advice to share about what was
helpful for getting them where they are today, and what strategies they use to
continue doing well. Even if the student you are planning for is not at the same
level of ability, these stories give insight and ideas that may be helpful for those
who are less able or cannot express themselves in the same way. In Chapter 9,
their advice, as well as some ideas about employment and college options, are

discussed. Parents, educators, and others involved would do well to read that
chapter when thinking about transition plans and the future.

8
Community Life
I . . . had trouble learning the rules to the games that other children played and I
often played the wrong way, causing the other kids to avoid me as well or tease
me. . . . My reactions to various situations were not quite what people
expected . . . I knew that I did not act right but I was often at a loss to know what
I was doing wrong.
—CLARE SAINSBURY, Martian in the Playground
Remember that your child’s relationships with others may look different. They
may just like to sit quietly and share the space with the other person. That is the
first step for people like me. Plan what your child would enjoy, not your idea of
fun. Many times people plan celebrations for parties, but they are too noisy for
most of us with autism. If the party is really for us, have it be small.
The Creation of Autistry Studios
BY JANET LAWSON AND DAN SWEARINGEN
It was difficult and heartbreaking to learn that our three-year-old son, Ian, had autism.
As he grew through childhood, we made use of many services and programs
available in our community. But as we looked at what programs were available once
he left high school, we were shocked to realize that there are very few programs,
services, or knowledgeable professionals available when an autistic child becomes
an adult. When my husband and I looked forward into that void, we turned to each
other and made a commitment to build a program that would help our son become as
independent an adult as he could manage. In 2008, when Ian was still in middle

school, we started the program that was to become Autistry Studios, located in San
Rafael, California.
We started with a group of four young adults on the autism spectrum. We met
with the group once a week for a four-hour-long workshop in which we helped them
discover their unique interests and develop their skills. In the barn/studio behind our
house, we created an environment rich with resources: power tools, hand tools,
wood, metal, fabric, paints, clay, books, magazines, etc. Each student was
encouraged to create a project of his or her own choosing.
We soon started a second group of four students, and then another group, and
another . . . until we outgrew the studio. We moved into a ten-thousand-square-foot
warehouse and our student body quickly reached nearly fifty individuals, ranging in
age from thirteen to forty-five.
As we listened to our students and became more aware of their needs, desires,
and challenges, the program that we had envisioned changed. My husband is a
software engineer and managed large groups of programmers building cutting-edge
software. He has a background in astrophysics and a passion for model-building. My
background is film, theater, and creating information systems. We had foreseen a
vocational program based on the acquisition of programming skills as we knew that
most kids love computer games. What we discovered was that the young adults who
joined our groups, though avid gaming consumers, had little interest or aptitude for
programming.
We let go of our vision and concentrated on our students’ interests. We learned
along with them how to make Halo helmets, teardrop trailers, LARP swords, and
many, many more fascinating projects. The nature of our program changed from
teaching to helping our students learn. We soon realized that the program was not
just about creating a project but about creating an identity. We looked at what
obstacles got in the way of them creating what they wanted to create and what was
preventing them from becoming the person they wanted to become.
The strong relationships between the students and the mentors and between the
students themselves have provided a firm foundation of trust that allows us to
challenge each other both vocationally and socially. With this challenge has come
amazing growth—for our students, our program, and ourselves.
This has not been an easy journey. We work long hours and at least six days a
week. We have donated vast amounts of resources to the creation of Autistry
Studios. But we have created a community that our son loves, where he has friends,
and where he and others may one day work.
Janet Lawson, MFT, executive director of Autistry Studios (autistry.com), has worked
with teens and young adults for many years. She previously worked in the film
industry and was a producing fellow at the American Film Institute. Janet is
responsible for the organization’s consistent achievement of its mission and financial
objectives. Dan Swearingen is the COO of Autistry Studios. Dan’s job is to maintain
technologies for the students to use in their projects and teach the students how to
(safely) use them. Dan was diagnosed with Asperger’s syndrome in his late thirties
when his son was diagnosed with autism. Dan was educated as an astrophysicist but
has worked mainly in the software industry.

WHEN he was younger, my son learned shopping skills with college students who
helped him with his afternoon activities. The college students started off by
teaching him appropriate behavior in stores, then how to use a modified
shopping list, finding the items, waiting in line, and paying for them. One day
my son and I were shopping and when we reached the checkout counter the
relatively new cashier said, “Hi, Jeremy, how are you? Oh, are you his helper for
today? Wait, let him empty the shopping cart; he knows how to do that.”
It felt good knowing that the cashier knew him, knew what he could do, and
was looking out for him. Now, at age twenty-five, Jeremy likes to go for a walk
on the beach and stop at a local restaurant for happy hour specials. New support
staff are always surprised at the number of people who say “Hi, Jeremy” as they
are walking by, and how the staff at a local restaurant brings fries to him right
away. He’s a regular customer and so like any other “regulars” they know what
he likes and they have it ready for him.
These are small things, but these kinds of connections make the place you
live in a community.
Creating Ties in the Community
Most people go through life easily developing all sorts of relationships, from the
casual relationship with the store cashier or restaurant waitress to relationships
with colleagues, classmates, and a life partner. Like a garden, all relationships
take a certain amount of tending to grow and maintain. And like gardens, the
more intense the relationship, the more tending is involved. No matter the age or
ability of a person, having relationships and ties in the community is vital.
Though we all like to think of ourselves as independent, we are in reality
interdependent: None of us is self-sufficient; we all rely on other people in one
way or another.
The same holds true for people with autism. However, because of the very
nature of ASD, developing community ties can be mind-boggling. For those of
an age and ability where they are on their own, it can be frustrating and seem
unnecessary and illogical. For parents of children and the less able, it is another
reminder of how their child does not fit in, and how society on the whole is
geared toward the competitive neurotypical person. Creating relationships in the
community can be hard work, but it is worth it and necessary. Thankfully, it is
now easier than years ago, and people are more accepting and understanding of

those with autism. As well, in many communities there are organizations that
provide social skills learning opportunities, and others help with the integration
of children and teens in the community.
Community ties are the threads in the fabric that binds society together.
Whether your child is shopping at the grocery store or is an active participant in
the Boy Scouts, he is engaging in some form of social relationship. Adults with
ASD also have different levels of contacts in the community. By creating these
ties, no matter how small, you are laying the foundations for being a part of the
community you live in. This is important for many reasons, not the least of them
being safety.
For an adult, community ties can provide a support network you can fall
back on if you ever need assistance. For a parent, they can help create the
foundation of the relationships your child will have as he gets older, and perhaps
be there when he is an adult and you are no longer around.
How to Create Community Ties
Community ties can be developed at different times on different levels.
Remember that a person has different relationship needs at different times of his
life, but all people need friendships and feelings of security and safety. As people
with ASD are in the minority, it is still up to individuals with ASD and/or their
parents to educate others and create those connections. Here are some tips.
Identify what the needs and desires are. If you are an adult with ASD, you
need to think about what your comfort level is, and what you would like to do in
the community. If you are a parent, you will need to identify your child’s
abilities, challenges, and interests, as well as what community skills he needs to
learn to prepare him for adult life.
Identify what information or skill the person needs to develop that
community relationship. If a person likes to go shopping but doesn’t have the
patience to wait in line, then he needs to learn the skill of waiting. A person who
likes to go to the library to look at books will not be fostering good community
relationships by taking all the books off the shelves and dumping them on the
floor.
Identify what information people in the community need in order to
facilitate building relationships. Perhaps the adult with ASD does not need any
special consideration; it all depends on the individual. For a child learning to

shop, perhaps the cashier will need to call him by name and ask him for the
money. A recreation leader will need to know the best way to communicate with
your child, any sensory and behavior challenges, and how to handle them.
Find out what opportunities exist in the community that might be a
good fit for your child. There are many more opportunities available than
before. Find out from your local autism support groups what exists in your area
that has been a good match for others.
Everyday Life in the Community
Regardless of a person’s age or ability, we all need to learn how to go about
everyday life and be safe in today’s society. Creating community ties is
necessary for that to happen. Think of all the skills you use just to function every
day and the skills you use to keep safe—most of these require interdependency
skills. Shopping for food, stopping at the curb, ordering in a restaurant, asking
for directions, going to the movies, having a friend over, locking your door—
these are the skills everyone should learn. Children and adolescents with ASD,
and adults as well, all need to learn basic community skills. Some of them can be
taught or addressed at school, but they still need to be generalized.
Safety Issues and Concerns
Safety is an area that everyone needs to learn about. Children with ASD do not
have some of the natural survival skills that neurotypicals do—many have no
notion of safety—and these skills need to be taught systematically and
thoroughly. Safety issues include wandering, drowning, and elopement. Visit the
NAA’s safety website, autismsafety.org, for prevention information and
resources. In Chapters 6 and 7, other safety challenges and resources were
shared. Later in this chapter other resources for making law enforcement officers
and others who work in the community more “autism aware” will be discussed.
Community and Recreational Activities for Children and
Adolescents

In reality, integration in community programs is not about finding the right fit,
but about searching for possibilities and creating opportunities for involvement
in existing programs or out in the community. It’s really about making a good fit.
Making a good fit means starting with finding out what interests your son or
daughter, figuring out the strengths they have, and finding clubs or activities that
are related. For example, if your child is into trains, find out if there are train
enthusiast clubs in your area. In San Diego, there is a train museum that offers
regularly scheduled activities. This could be a starting point for some.
If there is no activity or club in your area, consider starting one or helping
your child start one at school. It may be extra work for you, but the return in
connections for your child will be worth it.
A person who is severely autistic, even if he has no aggressive behaviors,
will not be able to participate in any community programs without an aide or
support person. In the end, the autistic person may have an easier time, in that he
will always have someone watching out for him and guiding him through the
experience. A more able person may benefit more from the actual experience,
but if he is not accompanied by an aide, he may be vulnerable to, at the very
least, misunderstanding by the group leader; and at the very worst, bullying by
his peers. This is why it is so important to choose activities carefully.
Every community offers opportunities for integration. Thanks to the
Americans with Disabilities Act (ADA) no one can discriminate against a child
or adult who wishes to participate in a community program, and in fact should
try and accommodate the person as much as possible. That means that some
places (such as our local Boys and Girls Club) may have a recreation leader or
two specifically trained to help integrate your child. As always, their training
may be general, and not ASD-specific, and so you may have to give them more
information. Some places to look are your local parks and recreation department,
community centers, recreation facilities, Boy and Girl Scouts, swimming pools,
places of worship, libraries, and sports clubs.
Activities have many benefits besides integration. For example, taking a
martial arts class such as tae kwon do can help improve motor skills, increase
self-confidence and self-esteem, and improve personal safety.
FOOD FOR THOUGHT
How We Prepared Our Son for the Library and Bookstore

My son loves looking at books. Going to the library and bookstore were activities he
really wanted to participate in when he was younger. However, although he had
quickly mastered the concept of pulling books off the shelves at home to find the one
he wanted, he had not mastered the concept of putting them back. He seemed to
enjoy having thirty or more books all spread out on the floor. This may be appropriate
behavior in one’s bedroom, but certainly not in public. He also had, on occasion,
ripped off the flaps of pop-up books. We decided that he needed to learn that it was
not appropriate to rip books and that books should be returned to shelves. These
behaviors were addressed and practiced at home before we allowed him to go into
the community to look at books in public. Once he was able to put away books at
home with minimal help, and had learned that ripping books would not be tolerated,
we started taking him to the local library, and finally the bookstore. Any ripping of
books or refusal to put away books and my son was immediately taken out of the
library or bookstore. As he enjoys these environments, he learned to treat books in a
respectful manner in public, and even at home.
There are also activities designed with individuals with disabilities in mind,
or certain times designated at recreational facilities. To find out what is on offer
in your area, contact your local parks and recreation department, your local
community services department, your local autism support groups, other parents,
and your child’s school.
How to Find the Right Activity or Program
Depending on where you live, you may have few options or many. The most
important thing is to make this a positive experience for your child, as well as for
the activity leader and the other participants. The first thing to do is to look at
your child and where his interests lie. Here are some questions to ask yourself.
What are your child’s likes and dislikes? What makes him tick or
motivates him? Does he like music? Computer games? Obviously, if the
individual is verbal or able to communicate in some form, you will be able to ask
him his opinion as to what he likes or doesn’t like, what he would like to learn to
do or participate in. Never assume that because you know this person you know
what he wants to do. Sometimes we make assumptions, and we need to ask the
right questions and make observations to know more. Above all, it is important
to choose what makes your child happy, not what makes you happy.
What is your child’s passion or obsession? Try and find activities based on
that. Even if your child is nonverbal and doesn’t communicate well, you may
have noticed that he is passionate about a particular object or topic.

What are your goals for your child with this activity? Are you looking for
an opportunity for your child to socialize with others his own age? Are you
looking for him to develop a hobby or learn how to play?
Does your child easily imitate and learn by watching others? Does he
need to be “motored through” an activity (physically prompted) many times, or
can he learn with minimal prompting and by watching others? Choose activities
where his learning can be adapted to the situation.
Does your child have behavior problems that may prevent him from
participating in certain activities? To make a community experience a positive
one for all involved, the child should not be a danger to others. Behaviors such
as hitting and throwing tantrums do not necessarily mean that he should be
excluded; however, a behavior plan should be in effect and working, which can
then be transferred to the community program. Identify any problems, and look
at how they affect him working in a particular activity. Then work on those
behaviors. In addition, skills such as taking turns and waiting are usually a
prerequisite for taking part in activities, and can be successfully taught at home.
What kind of sensory integration or processing issues does your child
have? Some activities may seem appropriate, but may be taking place in a
physical environment that is bothersome to the individual with autism. For
example, if your child has a hard time with noise or bright lights, then a location
with an “echo” to it or fluorescent lighting may make the activity difficult to
participate in. Perhaps he will be able to get acclimatized to it; perhaps not. It all
depends on the individual.
Does your child need a one-on-one aide to participate? Are you providing
a person to go with your child, or will they have to manage alone? Who is going
to provide the supports your child needs, and how will it be done?
How to Analyze the Different Options Available
Once you have short-listed some options depending on your child’s desires,
needs, and capabilities, going without your child to observe an activity or
program in progress is the next step. Here are questions you should be asking
yourself when observing.
What is the activity leader’s style? Does the leader seem authoritative?
Does he appear to make allowances for the different types of children? Is he
patient? How would the leader’s style mesh with your child’s personality?

How many other participants are there? Is it a small group or a large
group? Is that conducive for your child? Make sure you find out if that is the
usual group number.
What is the physical environment like? Are the lights very bright? Is it
noisy? Is the space large or small? Are there lots of distracting posters and
artwork up on the walls? Do you think your child would be comfortable and able
to participate here? Would your child need some desensitization to the
environment?
How to Approach the Activity Leader and What to Tell Him
After observing, if you consider this activity to be a possible match with your
child, talk to the leader and see how receptive he is to having your child in his
program. Although by law your child cannot be excluded from participating, it
will be a much more enjoyable experience if the leader is enthusiastic about your
child joining in. You will need to gauge how much or how little to tell the
activity leader at this point. The more able the child, the less you may want to
say. If your child needs to have a shadow aide or helper with him, you will need
to tell the leader. You should ask if you can bring your child to the activity on a
trial basis, and arrange the most practical time for all of you.
At some point, you may need to give the activity leader more information. It
all depends on your child, the activity, and the leader. You may have your own
personal philosophy and comfort level about what to divulge. Obviously, if your
child is severely affected by his autism, the leader and others in the group will
need to have at least some basic information about him. When placing a more
able child, the activity leader (and peers) need to be aware of how your child is
different. Luke Jackson (author of Freaks, Geeks, and Asperger Syndrome) and
Clare Sainsbury (author of Martian in the Playground) talk at length in their
books about the bullying and misunderstanding they were subject to, all because
the teacher and their schoolmates had no knowledge of their condition.
Here are ideas for what you may want to talk about with the activity leader.
Talk about the positive attributes of your child. Any special gifts or
interests your child may have that could pertain to the activity would be a good
thing for the leader to know. Even if they do not pertain to the activity, they will
be a point of contact and perhaps conversation.
Talk about the challenges of your child. If your child is a “runner” or bolts

out of the door when he hears the fire drill bell because his hearing is very
sensitive, the leader needs to know that. Does your child have any behavior
challenges? The leader needs to know what to do in situations that might arise.
Explain about ASD and how it affects your child. It is a personal decision
whether a parent wants to identify their child in a group as having ASD. My
personal opinion is that as parents of children with ASD, we should also be
advocates and educate the public in a positive manner so that our children will
be accepted everywhere. However, not all parents feel the same. Some parents
who have very able children do not want to use any label. To each his own
opinion. However, the important thing is that even if you do not use the word
“autism” or “Asperger’s,” you need to explain the communication difficulties
that may arise so that your child does not become the victim of
misunderstanding on the part of the leader or the other participants. He may get
enough of that at school, and this is supposed to be fun!
Make it clear what your goals are for your child. Are you expecting your
child to participate 100 percent in every aspect of the activity? Is your child
doing the activity to learn a skill or to learn how to be part of a small group?
Explain the shadow aide or helper’s role. If your child will be
accompanied by another person to assist his integration and participation, you
need to explain. Offer to come in and talk to the other participants. Again, think
of your child. It is important that he does not suffer bullying because of lack of
knowledge on the part of others. It is always a good idea to talk about ASD so
people will become more accepting and knowledgeable. If you explain to the
others about your child’s challenges and interests, they will know why he may
seem a bit different and will be more accepting. They may even find any special
interests he has cool. A good resource for the parent is My Friend with Autism by
Beverly Bishop. Beverly is a parent who wrote this book to help explain about
autism to peers and teachers at the school where her child is mainstreamed. You
may find it helpful.
How to Prepare the Child
Depending on his ability, there are different ways of doing this. Again, as
discussed in earlier chapters, schedules of what is going to happen, social stories,
and rules about expected behavior are good ways of getting your child geared for
the activity. Think of what works in helping him adjust in other areas, and use

those strategies here.
Tutors, Babysitters, and Respite Providers
When Jeremy was younger, I began my search for any tutors or respite providers
that I needed before the start of every school year. At first, I dreaded doing this.
After all, hiring and supervising personnel were my least favorite responsibilities
when I was a TV producer. And now, I am hiring people who will be responsible
for supporting my son as he learns, works, and goes about his day, people who
will be in our house and part of our home life.
I have been doing this for more than twenty years now, yet it is still hard
when people have to quit as they move on to another city to go to graduate
school, or they become teachers and aren’t available. But these people never
really leave us; they come back to visit on weekends and during the holidays, tell
us their news, and hang out with Jeremy and his sister, Rebecca, if she is in
town. They have become part of our extended family, and most of them will
always be a part of our family’s life. Inadvertently, we have created a support
system in every city we have lived in, meaning that even now we have people
familiar with Jeremy and his needs in the different places we return to for visits.
I have hired individuals with no prior training in autism or ABA, and after their
experience with Jeremy many of them have changed focus and gone on to
become professionals in special education or ABA. This is another way in which
Jeremy contributes to society.
Having Someone Working in Your Home
Some families with two working parents are used to having a babysitter or a
nanny in their home on a regular basis during the children’s growing years.
However, few families are used to having a constant rotation of people in their
home over a period of many years. If you have a child severely disabled by
ASD, two or more children with autism who are living at home, or you are
running a home program, you will need more than the usual help and
understanding provided by the occasional sitter, and perhaps for many more
years. Hiring, supervising, and having other people in your home is not always
as easy as it seems. You may sometimes feel, for example, as if your privacy is

being invaded. However, if you choose the right people, and keep a positive
attitude and a happy demeanor, you will grow to enjoy it.
Seeking Work with a Family
For those readers contemplating working as a behavioral tutor or a respite
provider in a family with a child who has ASD, this section will give you clues
as to what kind of questions you should ask the parents, how to know more
about what you are taking on, and what possible challenges you should be aware
of. Working for a family with a child with ASD is not like a typical nanny,
babysitter, or tutor position. It is hard for families to get used to having people
work in their home, and it takes a long time for a child with ASD to get used to
you, and for you to understand them. If you are unsure after an initial interview,
and the parents are interested in hiring you, ask them if you can come back one
more time and spend time with them and the child before deciding. If you
explain that you do not take your commitments lightly and want to make sure
this is a good match for both of you, they will be happy to have you come back.
The most important thing to remember is that the person you hire is there to
help your child, not be a counselor to you. Sometimes parents may start talking
to their tutor or sitter about problems at school, how depressed they are, or how
anxious they feel, and this is not appropriate. If you need to talk to someone
about your feelings, you should visit a friend, another parent, or a counselor. Be
sure to make your home a positive work environment for the people who are
there to help your child.
How to Hire a Tutor or Respite Worker
If you are looking for a tutor, you will want someone who has experience in or is
a good candidate for training in the therapy method you are putting into place, be
it ABA, verbal behavior, or Floortime. However, in terms of your expectations
and the issue of having another person in your home, many of the considerations
will be the same as when you are looking for a babysitter or respite worker.
These guidelines are here to give you a starting point and get you thinking about
the many aspects inherent in hiring and keeping good people. The responses
given to questions on pages 263–265 will help you in evaluating the strengths
and weaknesses of potential candidates and how that person fits in with your

needs.
Where to place an advertisement. Many people hire nannies and
babysitters and respite workers through agencies. These individuals are usually
specifically hired to take care of the children, not to be a housekeeper, too.
To hire people directly yourself, if there is a university or teacher training
college in your area, those are good places to start. Find out from other parents
what places work best to put up advertisements. Put ads in the newsletter of the
local chapter of your autism support group, if there is one. If you are planning to
have a supervisor oversee your home program, ask if they have any advice or
guidelines for hiring tutors, and if they know of tutors who might be willing to
work with your child.
What to put in the ad. Take the time to write an ad that gives adequate
information as to what type of person you are looking for. Some examples:
“Looking for tutors to work with my son. Parent looking for three people who
love children and are dependable and flexible, to teach my son, who has autism,
using applied behavior analysis techniques. No experience necessary, training
provided. Must be available 15 hours per week in 3-hour increments. Hourly rate
to be discussed. Please email résumé or call this number.” Or, “Looking for
trained behavioral tutors to work with my daughter with autism. Some weekend
hours. Behavioral supervision provided. Pay depends on experience.” Or,
“Looking for a babysitter. Parent looking for dependable person who loves
children and is flexible to provide after-school care for son with autism. Must be
available from 3 to 6:30 p.m. Training provided. Pay depends on experience.”
After stating the initial information of what you are looking for, take a few
lines to describe your child and his personality, what he likes and enjoys. You
want the person who responds to the ad to think of your child as a child, not a
label.
Read “Tips for Hiring In-Home Service Providers” on page 266 and follow
Dr. Nora Baladerian’s suggestions in regard to hiring, as it is very important to
do as much as possible to ensure your child’s safety. Along with Dr. Baladerian’s
suggestions, here are some additional questions to ask about work experience
and personality:
Looking over a résumé. You can learn a lot about the applicant simply by
carefully reading his or her résumé:
Does he have work experience?

Has she had job responsibilities before?
Has he had a regular work schedule?
Has she worked with children of the same age group as your child before?
What has he been studying at college and what kind of work has he done?
Questions to ask on the phone. On the telephone, you may need to ask
specific questions to draw the applicant out:
Has she worked with children before? What age group?
Has he ever babysat before or spent a lot of time around children?
How many siblings does she have, and what is her position in her family?
Why is he interested in working with your child?
How long can she commit to working with your child?
Can he provide any work references? If he has no work references, how
about personal references?
Is she willing to submit to fingerprinting (an administrative procedure)?
Questions to ask a person named as a work reference. Refer to Dr.
Baladerian’s questions, and add these practical ones as well. You want to know if
the candidate is reliable and easy to work with, as well as whether or not the
person is honest and safe to hire.
How long did the applicant work for them?
Is he dependable, reliable, and trustworthy?
Was she on time or often late?
Did he often call in sick?
Was she good at working independently and as part of a team?
Was he flexible and able to learn and do the job the way the employer

wanted?
Did she take constructive criticism well?
Did he show a creative streak?
What were her most positive attributes, and her least positive?
Would they recommend him for the position you have in mind?
Face-to-face interview. After you have screened by phone the applicants
you are interested in, it is time for the interview. Schedule it at a time convenient
for you and your child. If possible, do it when someone else is home working
with your son. First, interview the person face-to-face, asking her questions to
find out more about what kind of person she is. For example:
What did she like about the jobs she’s had in the past?
What does he hope to pursue as a career?
What hobbies or other interests does she have?
Why does he want this position with your child?
How long can she commit for?
What schedule constraints does he have?
Does she have any questions for you?
Then bring your child into the room (without the other tutor) and see how he
reacts to this other person, and how this person acts toward your child.
Does the applicant try to make contact with your child?
Does she appear respectful of your child?
What kind of approach does he have?
You know your child. Does it appear that he likes this person?

If you think this could be a match, go to the child’s room with the applicant.
Have her watch you or the other nanny or tutor play a game or do a puzzle with
your child, and then ask if she would like to try. Watch how she gets on, then
give her a few directives and see how she responds to that; is she able to change
what she is doing by listening to your suggestion? Again see if your child feels
comfortable with this person. After she leaves, if your child is able to tell you,
find out if he liked her.
FOOD FOR THOUGHT
Tips for Hiring In-Home Service Providers
BY NORA J. BALADERIAN, PHD
When hiring someone to work with your child (adult or minor), there is no “magic
miracle” that will 100 percent ensure that the person you hire will not attempt to do
harm. However, there are guidelines that can be followed both prior to employment
and during the employment period.
Perpetrators, sadly, are seldom identified, reported, arrested, or convicted.
Knowing this is very important, because many people believe that conducting a
check of legal actions (background check) is sufficient to identify perpetrators. This is
not true. Why? Most abuse is not reported. Most reported abuse does not result in a
conviction, which is required prior to a person’s name appearing in a background
check.
Thus, other measures must be used. First, do as thorough an employment
background check as possible. Second, monitor their work. Third, ask your child how
he or she likes the time spent with this employee, as well as monitor your child’s
responses when saying that this employee will be coming. Your child may not say or
do anything that indicates anything is wrong, but they may, so if there is an indication
they are not comfortable with a planned visit, pay keen attention to this. It may be
nothing, but it may be important.
When hiring:
1. Have the person complete a written employment application. Include the
“usual questions” and obtain a copy of at least two pieces of identification
(make sure to check the expiration dates, if any) that have their picture on it.
2. Ask for at least five years’ employment history with start and end dates,
including the name of the employer, duties fulfilled, and contact information for
the employer.
3. Include a space for the applicant to state why they left each employment
position.
4. Ask for information on their education and training for the position, including
the agency that provided the education, the dates of certificates, diplomas,
continuing education, or other indication of successful completion. Make sure

they include the address, phone, and email or website of the provider of
training.
5. Questions should be included such as whether or not they have ever been
convicted of a crime, such as driving under the influence of a substance (drunk
driving, for example), drug use, or dealing drugs. Keep in mind: You cannot ask
if they have ever been arrested, but you can ask if they have been convicted.
6. Ask for personal references. Although these may be the applicant’s family
member or best friend or paid informant, at least the asking for character
references may deter the applicant from providing false information.
Tell the applicant that you will check out all of the information they provide. Then
do so. Conduct a telephone interview with all prior employers. Employment law
restricts what former employers are allowed to tell you, but it does not restrict what
you can ask. Engage in a friendly conversation with all listed employers and
character references.
Prior to your call, prepare your list of questions that you want to ask. These can
include:
1. What were the dates the person worked for the employer?
2. What was the reason employment was terminated?
3. Was the employer satisfied with the work of the applicant?
4. What were the work duties of the applicant?
5. Did the employer believe that the applicant had the appropriate work skills?
6. Did they employer believe the applicant had an appropriate communication
and social interaction skill set for working in their home/agency?
7. Would the employer hire the applicant again?
When you feel confident that the applicant is a good fit to work with your family
and your child, notify the applicant for a pre-employment discussion that includes
information about your child and your family. Not only do you want to hire someone
qualified for the job, but you are interested in making sure that those you hire will not
harm your child in any way. The best way to do the latter is to design and implement
a plan for the safety of your child when he or she is alone with the service provider.
One of the pieces of your safety plan should be your openness about your plan.
Perpetrators have a plan, which is to get into a relationship with a victim and victimize
that person. You should have a plan, too! The book I wrote on abuse risk reduction
(Abuse of Children and Adults with Developmental Disabilities, available at
norabaladerian.com/books.htm) provides the basics for those who want to know how
to build a plan. For now, however, it is sufficient for any parent to advise a new
employee that the parents are aware that abuse happens, and thus the parents have
adopted an “abuse awareness and reporting policy.”
This policy includes not only the employment background check that they have
already completed at this point in the employment process, but also that they know
the signs and signals that abuse has occurred, and that the policy is to immediately
report suspicions of abuse to the police. The police can conduct a thorough
investigation. Employers should not attempt to do their own investigation, first,
because they are not qualified, and second, because any actions they take could
void the findings of a police investigation.
It is possible that the simple act of telling prospective employees that one is

aware of the signs and symptoms of abuse, that abuse of people with disabilities is a
fact of which they are aware, and that the parents quickly report their suspicions of
abuse to the police may deter perpetrators from continuing with the application
process. They may offer some reason such as they “just got approved for another
job.” The reason for declining your job offer does not matter, but it is possible that
your “abuse awareness program” saved you from hiring someone who did not want
to risk discovery.
It is often said that perpetrators “seem like such nice people.” That is true. That
is how they gain the trust of parents and access to the individual whom they see as
vulnerable. They know that by behaving in ways that create an appearance of
kindness, trustworthiness, dependability, and likeability their opportunities to have
access to vulnerable persons is increased. It is recommended to use the motto “trust
and verify.” It is not recommended to distrust everyone, but to trust others as well as
verify information provided to you and monitoring their work performance.
It is a good practice to write out the job description and the tasks you want
accomplished with your child, as well as specifics about your child that are essential,
such as communication, behavior, nutrition, sun exposure, and other sensitivities.
Although using these practices may not be 100 percent foolproof, they create a
level of protection for you and your loved ones.
Dr. Nora J. Baladerian is a licensed clinical psychologist in Los Angeles, California,
and the founder and director of the Disability and Abuse Project in Los Angeles
(disabilityandabuse.org). Nora has been working in the area of abuse of people with
developmental disabilities since 1972, and has developed and conducted training
materials and programs for parents, as well as professionals who respond to reports
of abuse. In 2008, she was awarded the National Crime Victim Services Award by
the U.S. Attorney General and the Office for Victims of Crime (OVC). She is
frequently called upon by attorneys to provide expert assistance for cases involving
individuals with developmental disabilities.
If you are comfortable with this person, then call her to come back when a
tutor or nanny is around to overlap. Spend some time again with your child and
the applicant, then have the applicant spend some time alone with the other
person and your child. This will provide the opportunity for the applicant to ask
questions of a non-family member who knows the child. It’s not always easy to
work for someone in their home, and you want to make sure she knows you can
be trusted as an employer. Also, you will be able to get your tutor or nanny’s
point of view on the applicant, which is a good thing to have. They may have
noticed some things you didn’t. At the end of this time, talk with the person, and
if you are interested in hiring her, find out if she is still interested in working
with your child.
The applicant will have had two opportunities to meet your child and a

chance to talk to someone in the position she will be filling. By now she should
have a concrete idea of whether she really wants to work with your child.
No matter how nice or trusting the person appears, do not forgo following
Dr. Baladerian’s advice above. Better to be safe than sorry.
How to Supervise and Keep Good People
Somehow, our house acquired the reputation of being a good training ground for
tutors and respite workers. I often got calls from special education
administrators, parents, service providers that supervise home programs based
on ABA, and social workers. They would call asking if anyone currently
working in our home or who had worked in our home was available for working
elsewhere as well. This was mostly due to Jeremy and his pleasant personality,
which was so endearing.
However, in asking people why they enjoyed working for our family so
much, the number one response after their love of Jeremy (and his sister,
Rebecca) was that we were organized. This does not mean our house was
particularly clean or neat, as we do not have the time it would take to earn the
Good Housekeeping Award in our neighborhood. We do the minimum amount of
cleaning so we will not be cited by the Health Department. Jeremy was
particularly talented at “redecorating” the house (“Uh-oh, Jeremy’s doing a
‘Martha Stewart’ again!”), and although we attempted to teach him that he can
only redecorate his own room, what he has learned is to redecorate when no one
is watching.
Being “organized” in this case means that the wonderful people working in
our home knew what they are supposed to do, when they were supposed to do it,
where everything was, and where to put it back. Here are some guidelines to
make life easier for all of you:
Make sure responsibilities are clear. Draft a contract that outlines your
responsibilities toward the person you are hiring and their responsibilities
toward your child and you. The contract should cover how much they are
getting paid, how often they are getting paid, whether or not you are paying
sick leave and holiday pay, when pay raises will be given, and, if they will
be driving your child anywhere, what they will be compensated for using
their car, or any insurance details if you are providing one.

Make sure that the hours and times they are to be present are clear. Make
sure they know they are responsible for those hours, and make it clear that
if they need to make a change, they are responsible for communicating that
to you as soon as possible. If there are several tutors, you may wish to make
it their responsibility to find someone else to work their hours.
Make a calendar and hang it in an easily accessible area so people can see
special appointments or make changes in scheduling.
Make sure appropriate notice is given if you have a change in schedule
because of a doctor’s appointment, or if your child is ill.
If you expect some degree of flexibility on their part in terms of changes in
work hours, be prepared to be flexible when necessary in regard to their
schedule.
Make sure you have everything they need to do their work, and that
everything has a specific place so things are easily found.
Have a communication book located near the phone or in the kitchen where
notes to each other can be quickly jotted down if need be. There are
different online project management tools and apps that can be used for
parents and staff members to communicate with each other, for example,
Basecamp. This is a good place to keep a schedule and have all information
posted, so that everyone can access the information all in one place.
In the home environment, it is important to remember the boundaries of the
work relationship and keep them clear.
Remember that they are there to help your child and not to be your
counselor. Give them information that they need to know for working with
your child, but do not overburden them with the emotional issues, school
issues, or legal issues that are on your mind. Those are for you to handle
and get help with from someone else. The people working with your child
need to concentrate on your child and helping him learn, not think about
your problems.
If your tutor is working with your child at a school, clarify what their
responsibility at the school is.
Keep your rapport with the tutors respectful and professional. Never discuss

any issues that are not their concern, such as any disagreements you may be
having with the local school authority or another professional. Never speak
negatively about other tutors or nannies who are currently working or have
worked in your home.
Make your expectations of the tutors or sitters clear.
Do not expect them to do things you would not do yourself.
Have high expectations of their job performance, but give them what they
need to do their job well.
Make sure any new babysitter or tutor feels comfortable enough with your
child to be able to handle any behavioral situations that may come up,
before sending them out in public with him.
If you have any behavior plans for your child or if you are working on any
particular behaviors, make sure everyone who helps or works with your
child knows what to do and ensure that everyone is handling behaviors in
the same manner. This will make life easier for everyone—most of all your
child—and be of great benefit to your child.
Give people working with your child information about his likes and
dislikes, as well as any other pertinent information. Having this written
down somewhere is helpful. This makes tutors and nannies feel comfortable
with your child, and they will know more about what they can use to
motivate him. Your child will feel more comfortable with someone who
knows about what is important to him.
If you are running a home program, keep up to date and know what is being
worked on. Give support when needed. When tutors are new and having
problems with a behavior or noncompliance, or when new behaviors come
up, they need to know you are knowledgeable enough to help them figure
things out until they feel they can analyze it and handle the situation
themselves.
If you have any concerns or comments to make about what they are doing,
talk to them privately. Explain to them your concern and ask if there is
anything you can do to help. For example, think about why you have that
concern and bring it up in a positive, constructive manner and not as a

criticism. If you notice that one person always asks you for materials and
never puts them away afterward, do not assume they think it is part of their
responsibility to get them out and put them away. Or perhaps the needed
items are not in a clearly designated area, and they do not want to root
around in your things looking for them. Do not wait until you are frustrated
and confront the person. After this has happened a few times, say
something like, “Do you know where the items are located? It would be
helpful to me if you could get the materials out and then put them away
when you are done. Let me show you where they are.” Perhaps they are not
thinking, but perhaps you have not made it clear that you are expecting
them to do that. If that is the case, make sure you make the responsibilities
clear to them.
Feedback is always appreciated. Show appreciation of the effort they put
into their work by commenting favorably on progress your child has made
related to work they are doing with him, or thank them for something you
noticed they did that has been helpful to you.
Showing appreciation on birthdays and holidays is always a good way to
keep them feeling that they are important to the family.
Holding a dinner party and inviting all the past and present tutors and sitters
is a fun thing to do. Over the years, the nannies and tutors get to know each
other, and it’s nice to have this time to catch up with each other as well as
get tips about college and jobs.
For more information on hiring in-home support, read A Stranger Among
Us: Hiring In-Home Support for a Child with Autism Spectrum Disorders or
Other Neurological Differences by Lisa Ackerson Lieberman.
For information about what in-home support staff need to know and how to
organize the information, read Sharing Information About Your Child with
Autism Spectrum Disorder: What Do Respite and Alternated Caregivers Need to
Know? by Beverly Vicker, MS.
What the General Public Should Know About ASD
As ASD becomes more and more common, it is important for retailers,

emergency responders, recreation leaders, daycare providers, law enforcement
officers, bus drivers, designers of public spaces, and anyone who works with the
public to have an understanding of these individuals as they are your neighbors,
your clients, the person you may be called on to help one day. In order to help
your fellow citizens and to avoid potentially dangerous situations, you need a
basic understanding about ASD. You may not need to know everything in this
book, but you can get a good introduction by reading the following sections:
“Characteristics of Autism Spectrum Disorder” on pages 21–27
“Why People with ASD Act the Way They Do” on pages 50–56
“Myths About Autism Spectrum Disorder” on pages 2–8 will also be
helpful in dispelling some of the false assumptions you may have.
Parents may want to use this section as a guideline on what information to
convey to people who will encounter your child in the neighborhood and
beyond:
“Public Environments and Sensory Processing Issues” on pages 276–286
Another short read that answers the most common questions asked about
autism is my book What Is Autism? Understanding Life with Autism or
Asperger’s.
Once you have a general overview of what autism looks like and why, you
will appreciate the concerns about safety in the community for people with ASD.
For some, it is as elementary as not having any notion of physical safety. They
may take off in the middle of traffic to check out something interesting on the
other side of the street, or head for a pond, river, or pool because they are
attracted to water. For others, it may be not understanding about personal space
and not recognizing when people are being “too friendly,” or whom to approach
when lost and needing directions. Many safety concerns and skills may be taught
to some individuals with ASD, but for others they are extremely difficult.
Another concern is that if emergency responders are not knowledgeable
about behaviors exhibited by some individuals, they may not know how to
respond in the line of duty when faced with autism. For example, many children

with autism do not reply to their name, nor do they follow directions, which can
be a life-and-death situation in case of a fire, when the firefighter is trying to
give instructions that need to be followed. Many people with autism do not like
to be touched or do not tolerate loud noises, and they become tense. A very able
person with autism or Asperger’s may take everything literally, and does not
understand expressions the rest of us take for granted. For example, the
expression “spread eagle” means just that: a spread eagle; and the person will
not understand that the peace officer is telling him to take a particular pose. The
peace officer will need to tell him exactly what to do (i.e., “Stand against the car,
and put your hands on the top of it”). A peace officer may be called because
someone is reported to be peering into windows. Perhaps this person has autism
and is staring at reflected light in the window, not looking inside, and has no idea
what the fuss is about. Thankfully, there are now many initiatives under way
across the country for first responder (including police) training.
In the autism community, people are working hard at determining better
ways of teaching safety issues to people with autism, as well as getting people to
display stickers in their front windows explaining that someone with autism lives
there and making sure people carry ID including the word “autism” and an
explanation. Yet we really need the help of the community in keeping our
children and teenagers, as well as adults with autism, safe. Being able to
recognize some of these behaviors and how to deal with them is one way you
can help. Here are three excellent sources of information on safety, for general
use, for the prevention of senseless tragedies, and for training emergency
responders:
National Autism Association Safety Initiative: autismsafety.org
Autism Speaks Safety Project: autismspeaks.org/family-
services/autismsafety-project
Autism Society of America: autism-society.org/living-with-autism/how-we-
can-help/safe-and-sound
Public Environments and Sensory Processing Challenges
In recent decades, we have seen more and more cases of asthma, hyperactivity,

ASD, behavior problems, and allergies than ever before. Children are routinely
given medication for hyperactivity and behavior problems.
In Chapter 3, some of the behaviors of people with ASD and what they
could mean were discussed. Many of those behaviors can be indicative of
allergies and problems with sensory integration. Every book by a person who has
ASD contains references to sensory processing difficulties, the sensitivity they
have, and the pain they experience from overstimulation.
In Chapter 5, some helpful treatments and therapies are discussed in regard
to sensory processing challenges. Parents of children on the spectrum and adults
on the spectrum can find resources to help.
Fluorescent Lighting
Temple Grandin, Donna Williams, Stephen Shore, and Liane Holliday Willey all
write about how terrible they find fluorescent lighting. But it is not only people
with autism who are affected.
In her book Is This Your Child’s World? How You Can Fix the Schools and
Homes That Are Making Your Children Sick, Doris J. Rapp, MD, discusses the
subject. As would be expected, natural lighting is best. Fluorescent lighting
appears to be a major source of trouble for many people. A study of one
classroom showed a decrease of hyperactivity by 33 percent when the
fluorescent lighting was replaced by full-spectrum lighting. Germany banned
fluorescent lighting in its schools and hospitals years ago, whereas in other
countries such as the United States, people seem to prefer the use of the drug
Ritalin to counteract hyperactivity rather than looking at possible environmental
factors that contribute to the disorder.
In his book Health and Light, Dr. John Ott discusses the possible health
effects of different wavelengths of light. Dr. Ott videotaped students using time-
lapse technology, and these videos demonstrated the increase in hyperactivity in
some of them when fluorescent lights are used.
FOOD FOR THOUGHT
The Curse of the Fluorescent Light
Fluorescent lighting has got to be one of mankind’s worst inventions. I always hated

going shopping—after ten minutes I would become irritable, feel restless, and get a
major headache. Once home, I would be so exhausted I would have to lie down.
While shopping, my husband would ask me, “Are you hungry? Are you tired? Why
are you so cranky all of a sudden?” I could never figure out why my mood would
change so suddenly and how I could feel so physically bad so quickly. It was not until
years later when I lived in France that I realized it was the fluorescent lighting that did
it to me.
Most of the time in Paris I shopped at the wonderful food markets or local shops,
but every once in a while it was necessary to go to a supermarket for sundry items.
The small supermarket closest to our apartment had these horrendous fluorescent
lights that you could actually see flicker and hear buzz. It was horrible. The checkout
girl who worked there looked poorly and so depressed all the time. One day I asked
her if she was okay, she looked so ill. She told me she had constant headaches and
felt nauseous at work, and she thought it had to do with the lights.
Then all of a sudden it clicked. Looking at my past behavior patterns, I could see
a connection between the kinds of stores that made me feel ill and the ones that
didn’t. I then started asking people around me and was surprised to find that many
people suffer from the curse of the fluorescent light.
Once I realized what was causing my discomfort, I limited my outings to those
kinds of stores and never planned a shopping day where I would hit more than one
big shop (such as a Costco or Ralph’s) in a day. My husband is now the designated
supermarket and department store shopper in the family (he has a natural talent for
this; at one time he worked in procurement). But mostly, we have taken our business
elsewhere, avoiding major shops and spending money where people are more
cognizant of making a comfortable working and shopping environment.
In the United States, smoking is prohibited in most public places, and in some
places even in restaurants and bars, and this was done to protect the workers behind
the counters as well as the customers. And of course, new buildings have to be
designed with easy access for people in wheelchairs. So how about a law banning
the use of fluorescent lighting?
Think of all the checkout men and women and shelf stackers working in
supermarkets. And what about the teachers and physicians who are obliged to spend
long hours under those lights? Perhaps sensory integration dysfunction should be
labeled a handicapping condition and no new buildings should be designed with
fluorescent lighting. Then, perhaps, students will finally have a proper environment to
learn in.
Sensory Processing Disorder (SPD)
Sensory processing challenges stem from the brain’s inability to correctly
process information received through our senses of taste, touch, smell, sight, and
sound. People can be hyposensitive in some areas (meaning they fail to pick up
cues) and hypersensitive in others (meaning that they are overly sensitive to
stimulation of a sense).

When a person’s senses are over-or understimulated, it affects their behavior
as they try to compensate for a lack of stimulation or for overstimulation. Some
individuals with sensory integration problems are aware of these challenges;
others are not. Once a person is aware, it is possible in some cases to learn to
compensate in a positive way or to undergo desensitization over time. However,
for many people, especially children, and people who are severely disabled by
autism, it is difficult, as they are unknowingly put in situations where they have
no control over their environment, which may lead to displays of inappropriate
behaviors.
For an idea of what it is like to have sensory processing issues and live in
today’s man-made environment, read what some people with ASD have to say:
I also found many noises and bright lights nearly impossible to bear.
High frequencies and brassy, tin sounds clawed my nerves. Whistles,
party noisemakers, flutes and trumpets, and any close relative of those
sounds disarmed my calm and made my world very uninviting. Bright
lights, mid-day sun, reflected lights, fluorescent lights; each seemed to
sear my eyes. Together the sharp sounds and bright lights were more
than enough to overload my senses. My head would feel tight, my
stomach would churn, and my pulse would run my heart ragged until I
found a safety zone.
—LIANE HOLIDAY WILLEY, Pretending to Be Normal
It came as a kind of revelation, as well as a blessed relief, when I
learned that my sensory problems weren’t the result of my weakness or
lack of character. When I was a teenager, I was aware that I did not fit
in socially, but I was not aware that my method of visual thinking and
my overly sensitive senses were the cause of my difficulties in relating to
and interacting with other people.
—TEMPLE GRANDIN, Thinking in Pictures
All daily transitions are very hard because I need to prepare my body
and senses for what is coming up next. It is nice to have understanding
staff, but frankly I dread transitions from one place to another. I have
lots of strategies for transitions. Knowing what is happening next is

important. The hope that the following activity will be pleasant is a
great motivating tool to help me through transitions. Being reminded of
the rules we write together is necessary. Carrying a magazine or book is
necessary.
Sensory processing disorder is not experienced only by people with ASD.
The Out-of-Sync Child by Carol Stock Kranowitz describes how some children
may be labeled as inattentive, clumsy, and oversensitive when they are really
suffering from sensory processing disorder.
Creating People-Friendly Environments
Granted, there are some environments that people with sensitivities need to and
should learn to tolerate for short periods of time. However, when designing an
environment where people are expected to learn or work for long periods of
time, or where people are going for medical treatment and are already not well,
doesn’t it make sense to look at environmental issues?
Dr. Rapp’s book Is This Your Child’s World? should be required reading for
all school and hospital administrators responsible for having their buildings
renovated or constructed. There are many toxins in ordinary classrooms that
could easily be eliminated.
FOOD FOR THOUGHT
Sensory Processing Challenges: Tips from Temple Grandin
Over two phone conversations, Temple shared the following important information
about sensory processing and environments for people with ASD.
All people with ASD have sensory processing problems. Some of them may be
auditory, some of them may be visual. Recently scientists have been able to map out
the circuits in the brain for the separate visual and auditory areas, and they see that
those corresponding areas are differently wired in people who have visual or auditory
processing difficulties. Temple emphasizes that there are individual variations in the
severity of the processing problems, and variations also depend on how tired the
person is: the more tired the person is, the greater the risk of sensory overload.
People with ASD usually cannot multitask, as they usually can only fix on one

sensory process at a time.
For each individual and for each sensory processing issue there is a balance to
be found between adapting the environment to fit the need of the person, and
adapting the person to the environment that already exists.
If you are a parent or caregiver of someone who you suspect has sensory
processing difficulties, but who is unable to communicate that to you, Temple
suggests doing the “supermarket test.” Take the person to the supermarket and see
how he behaves, using the behaviors listed on pages 24–27 as a guideline.
The number one worst enemy for people with visual processing problems is
fluorescent lighting. Some people with autism can see the flicker of sixty-cycle
electricity. It has the same effect that being in a disco with strobe lighting has for
neurotypical people. Unfortunately, because of its low cost, fluorescent lighting is
present everywhere.
For people with auditory processing issues, fire bells can be particularly painful.
They are very loud and you do not know when they are going to go off.
Department stores and supermarkets are particularly challenging to people with
sensory processing issues, not only because of fluorescent lighting but also because
of the overstimulation provided by the colors, stripes, and mosaic patterns on the
displays; the smells from perfumes, detergents, and cleaning products; and the noise
level due to hard flooring.
So there are many questions that come to mind. For those individuals unable to
communicate, how do you know what is creating the overload, and what can you do
about it? Temple suggests observing the person’s behavior.
Those with visual processing problems:
Use peripheral vision, with which they can see better (i.e., they look from the
sides of their eyes and avoid looking directly at people or objects)
Flicker their fingers or other objects in front of their eyes
Avoid escalators in stores and appear afraid of them
Have difficulty negotiating stairs in places unfamiliar to them
If you have visual processing problems, here’s what you can do (or help
someone else who has them to do):
1. Go shopping earlier in the day when you are not tired.
2. For a temporary fix in areas that you cannot control, such as supermarkets, try
wearing a hat with a brim, or a visor.
3. Wear colored lenses such as sunglasses or Irlen lenses. Some people with
visual processing issues report that the lenses help not only with seeing, but
with training the visual processing so that in some cases they need lighter and
lighter lenses as time goes by. From what Temple has heard from people who
use colored lenses, the brownish, purplish, and pinkish lenses seem to work
the best against fluorescent lighting.
Usually when a person in the family has sensory processing issues, a parent
may have them, too, to a lesser degree, so for people unable to communicate, the

parent could see what color works for them and start with that. Another way to see
what is helpful is to try different-colored lightbulbs or transparencies to overlay on
written work, and see how the person works, learns, or acts under those
circumstances. Temple warns, however, that many sunglasses may be too dark to
help with reading. She also reports that Blue Blockers sunglasses work well.
4. In areas you can control, such as your home, do not use fluorescent
lightbulbs; use the old-fashioned incandescent kind.
5. Unfortunately, fluorescent lighting will not be replaced everywhere because of
its low cost and efficiency. Schools that have students with ASD should
definitely remove these types of lights. In the meantime, for a quick fix for an
individual workstation or desk, use a desk lamp with incandescent lightbulbs to
offset the fluorescent lighting.
6. Use laptops or the newer flat-panel computer screens. The larger, older
computer monitors have a flicker much like fluorescent lighting does.
Because laptops and flat screens are expensive, try finding a big company near
you that frequently upgrades its equipment. Normally the used computers are
donated or sent out to be broken up and recycled, and so you may find a sympathetic
company happy to give you one of their throwaways.
Those with auditory processing problems:
Cover their ears or leave the room when loud noises go off
Cannot tolerate loud noises such as fire bells or school bells
Cannot talk on the phone in large places such as airports due to the echo and
resonance of the noisy crowds
Move as far away as they can when there are too many people near them in
the room talking
Cannot pronounce the consonants of words because they are unable to hear
them properly (hearing tests do not measure auditory detail that they may not
be hearing; the hearing threshold may appear normal, but in fact they may only
be hearing vowels, so they cannot produce the sounds of consonants)
If you have auditory processing problems, here’s what you can do (or help
someone else who has them to do):
1. Go to noisy places earlier in the day when you are not tired.
2. Get auditory training to help you tolerate the frequencies that may be causing
discomfort.
3. For a temporary fix for supermarket shopping, wear earplugs, white-noise
busters, or listen to music. Temple warns that although ear plugs and noise
cancellers are okay for getting through an experience such as a trip to the
supermarket, they should not be used on a regular basis, as the auditory
system needs to learn to get used to and tolerate some amount of the noise
which is around in the everyday environment.

4. To get desensitized to the sound of fire bells, Temple suggests taping the
sound of a fire bell and listening to it, controlling the volume and length of play.
Every time you listen to it, the volume can be adjusted as well as the playing
time, yet always under the control of the person who is getting desensitized.
5. To ease the noise of scraping chairs on hard floors, pad the bottoms of the
chair legs. You could use old tennis balls: Make a slit and fit them onto the
bottoms of the chair legs.
6. For soaking up sound, put carpeting on floors and also on the walls of rooms
(or insulate the walls). A good cheap way to get carpets is to ask carpet stores
for remnants as donations, or contact major hotels, which redecorate often,
and see if you can get the carpet they are removing and throwing away. (You
will have to clean it.)
7. To teach the consonants to a person who can’t hear them well, emphasize
them very strongly, putting the accent on them, so the person can hear them.
Some people with autism have body boundary issues. Most people can tell
where they are in a space. Normally, a person can close his eyes standing in front of
a wall, and put his hand on the wall, knowing where his hand ends and the wall
begins. For those who have body boundary issues, they are unable to “feel” this.
Temple says that lots of brushing, massage, and deep pressure can help people feel
their body boundaries.
Many people with sensory processing difficulties seek relief from too much or too
little stimulation by rocking their chair. A therapy ball can help, but to avoid the cost of
a therapy ball (or to avoid a child playing on it and not concentrating), make a T-stool
with two pieces of plywood. The person will have to rock slightly on it to keep their
balance.
Here is some advice for designing environments:
My ideal educational environment would be one where the room had
very little echo or reflective light, where the lighting was soft and
glowing with upward projecting lighting. It would be one where the
physical arrangements of things in the room was cognitively orderly and
didn’t alter and where everything in the room remained within routine-
defined areas. It would be an environment where only what was
necessary for learning was on display and there were no unnecessary
decorations or potential distractions.
—DONNA WILLIAMS, Autism: An Inside-Out Approach
Imagining that one’s senses are 1,000 times more sensitive than reality
can help a person to design environmental accommodations for those on

the autism spectrum. Considering each sense individually can assist
with organization of both the issues caused by the sensitivity and the
remedies for relief. In considering the sense of sight, a person with a
vision hyperacuity might be bothered by the presence of fluorescent
lights, because the lights cycle on and off 60 times per second in timing
with the Hertz of alternating cur rent. In such cases, a different form of
illumination should be used. It is also possible that the humming from
the ballast of a fluorescent lamp is irritating to individuals who are
sensitive to sound.
—STEPHEN SHORE, Beyond the Wall

9
Adults Living and Working with Autism Spectrum
Disorder
Once you become an adult, usually at twenty-one at the most, nobody is
obligated to take care of you anymore. After that, where you live and how you
live, more than anything else, depends on you and what you make of your
abilities.
It will be easier for you if you prepare to accept an eventual change in
where you live before failing health or death of your parents forces this reality
on you. I am grateful to my parents for what they did but I have to say that I live
more independently and fully now that they are gone. I had no choice.
—JERRY NEWPORT, Your Life Is Not a Label
The problem of long-term care plagues all parents of people with cognitive
difficulties. People with cognitive disabilities are so vulnerable. . . . What
parents want for their children and what they get are two completely different
things. The government offices and private agencies responsible for serving them
make for a huge, complicated system. . . . Parents have mixed feelings. They
know what they want in a general way, but don’t know how to go about
achieving it.
—LINDA J. STENGLE, Laying Community Foundations for Your Child with a Disability
FOR a short while I worked as a case manager for one of California’s regional
centers, providing resources to individuals with developmental disabilities. Some
of my older adult clients who required a lot of support were still living at home
with elderly parents. When I visited them, I could feel the anxiety, hear the
tremor in the parents’ voices, sense their exhaustion, knowing they were
concerned not only about today, but the future, when they would no longer be

around to look out for their child.
Then I had Jeremy. Now he is twenty-five, and I know that although he
continues to learn, he will always need supports. He only has one sibling, and
our relatives are spread out over the globe. The reality is that my husband and I
are going to be aging parents, and we need to create with him options he is
comfortable with. We can’t imagine him living alone or in a residential facility
or group home, where he knows no one and where he will be at the mercy of
others unknown to us or even find his “home” sold like a business and run by
others. He wants to live in his own community, with chosen roommates, just like
any other young person. He would like to have a girlfriend and eventually get
married. We want him to be surrounded by friends and people who love him,
who can give him the support and strategies he needs to continue to learn and
find his niche. We are exploring options, helping him prepare to move out into
his own place, and making plans for the future.
The Reality of Life as an Adult with ASD
In A Full Life with Autism: From Learning to Forming Relationships to
Achieving Independence, published in March of 2012, Jeremy and I extensively
covered adult services, and you may wish to consult that book for more
information than what is included here.
Meanwhile, in Chapter 7 of this book, we touched upon the need for
preparation in high school for transitioning to the world of work or college. This
chapter is written primarily for adults with ASD and their families or caregivers,
but educators working with teenagers, prospective employers, and others
working with adults with ASD will find a wealth of information as well. Those
involved with transition planning from high school to real adult life would do
well to read this for ideas and insight as well as resources for more information.
(Those with ties to policy makers and purse-string holders could highlight the
parts of this chapter that discuss the lack of available services and the need for
more funding, and send it on to them.)
Some adults with ASD are able to live and get what they need with little or
no assistance. Others, although able, will need support throughout the process.
Even more will need support and supervision twenty-four hours a day for most
of their lives. In this chapter, services and ideas for different ability levels will be
covered.

More is known about adults with ASD than ever before. Many of the more
able people with ASD have written personal accounts of what their lives are like,
and how they overcame challenges to make living in a neurotypical world easier.
Their suggestions will be helpful to many readers. New ideas about possible
living and working solutions have been put forth recently that may be helpful for
those needing more supports.
The federal and state governments have a responsibility to all its citizens. In
the United States, the Americans with Disabilities Act gives people with
disabilities equal rights as others. However, although improvements have been
made, equal access and opportunity is still “in progress.” Not enough
opportunity—or supports to benefit from an opportunity—is available. However,
there is hope as parents, professionals, and organizations work together to
improve the situation and generate alternative solutions and creative funding
mechanisms.
The Challenges of the Individual
Over the last few years, more and more adults with ASD have written books
about living with autism or Asperger’s. It is very inspiring to read the accounts
of their lives and how they overcame some of their challenges. The skills they
developed in order to survive in a neurotypical world can give ideas to others
like them or to parents and educators to help prepare teenagers and young adults.
However, the stark reality is that most people with ASD, even those who are
very able, do not enjoy the work and living environment that these authors do.
Why is that? First of all, these individuals are exceptional people, not only in
their intelligence but in their determination and motivation to live a full life.
These individuals have Asperger’s or are on the very able end of the autism
spectrum. Second, most of these individuals had strong, supportive mothers or
fathers who were able to fight for what they thought their child needed while
they were growing up, and who stood by them regardless of what label they had
at the time for their difficulties. Thirdly, the parents raised them in such a way as
to build a strong sense of self-esteem, and if they subsequently married, their
spouse continued that support. These factors helped them to overcome the
challenges they had and create a fulfilling life.
Unfortunately, all these factors do not always exist for most individuals.
Even most neurotypical individuals do not have that drive and self-motivation to

succeed against all odds. And not all parents have the knowledge, stamina, or
conviction to go out and fight the powers that be for what their child needs as
they grow up, and even less when they are young adults.
Options and Preferences
Some people on the more able end of the spectrum have found the college or
university environment a comfortable place for them to learn and even work.
Others have found that particular fields of work are more conducive than others.
Dealing mainly with objects and data and less with people often appeals to those
who have strong social impairments.
Many more will need help to find a job and coaching to keep it. Not only
does the adult with ASD need to develop strategies to be a good employee,
employers need to know how to make the job a good match with the employee.
Good coaches will be needed to help put strategies in place to help those with
inappropriate behaviors learn to keep them in check in the workplace.
Still others will need extensive supports and may be in volunteer or day
programs learning skills and behaviors necessary for appropriate job placement.
FOOD FOR THOUGHT
Adulthood
BY PETER GERHARDT, EDD
One way of understanding the development of comprehensive programs of
intervention and support for adult learners with ASD is to consider the difference
between a disability and a handicap. A disability can be defined as a permanent
reduction in the function of a particular body part or structure. A handicap, on the
other hand, is defined by the challenges that the disability presents to the individual’s
participation in desired, life-relevant activities.
As such, any system of intervention or support first needs to identify the
individual, environmental, instructional, and community conditions under which the
disability of ASD may present an individual learner with less of a handicap.
Using this perspective, the adult with ASD becomes simply one target of
potential intervention among a variety of targets (e.g., coworkers, cashiers,
modifications to job requirements or the physical environment, the provision of
community training, and support) designed to support increasingly greater levels of
personal independence and competence. In this model, then, the goal is not to “fix”
the adult learner with ASD but rather to simply view them as one of many potential

targets for instruction, support, and growth, and in so doing, reduce the impact of
potentially handicapping barriers while increasing the personal competence of all
concerned.
Adulthood for learners with ASD needs to be understood as more than just a
chronological state. For everyone, adulthood represents a time in one’s life where
there are increased levels of independence, choice, and personal control. Further,
adulthood is generally recognized as a period of increased responsibility,
commitment, and, more often than not, delayed gratification. It is during this time of
life that we generally experience our greatest successes as well as some of our
greatest difficulties. Adulthood, despite some popular perceptions, is a time of
continued growth and learning and not a period of stagnation, and is, in many ways,
the defining period of one’s life. We may look back fondly on our childhood, but it is
our accomplishments as adults for which we are generally most proud. Adulthood for
the adult with ASD should be viewed as no different.
Peter Gerhardt, EdD, is the author and coauthor of articles and book chapters on the
needs of adults with ASD, the school-to-work transition process as well as the
analysis of intervention of problematic behavior. He has presented nationally and
internationally on these topics. Dr. Gerhardt is the director of education at the Upper
School for the McCarton School in New York City and serves as chairman of the
Scientific Council for the Organization for Autism Research.
The concept of self-determination is taking hold in more and more states by
people with disabilities and their families. It is about allowing people with
developmental disabilities to make their own choices and supporting them as
needed. This philosophy, which is about recognizing people’s abilities rather
than their disabilities, necessitates changes in state policy and local agencies in
how they provide support for individuals.
Regardless of the ability level of the individual, the person’s own
preferences should be taken into account, and there are ways of trying to figure
out what is important to even the least communicative of individuals. This is at
the heart of person-centered planning, an approach discussed in Chapter 7 under
the heading “Preparing for Life After High School” (page 240).
The State of Adult Services
The United States has many laws that protect, and services that provide for, the

developmentally disabled. Sadly, it is not enough for all in need today—or for
the epidemic numbers of children with ASD that will grow to be adults
tomorrow. Currently, there is great concern in the autism community about the
wave of children and teens who will need services as adults, and that we are
wholly unprepared for the vast numbers, due to the increase in diagnosis as
discussed earlier in this book. Due to the tenfold increase in the prevalence of
autism during the past decade, the number of children with autism who will
become adults is huge. Currently we are seeing the tip of the iceberg, but there
are far greater numbers of older individuals—teens and young adults—who are
in need of appropriate services than ever before. The reality is that services for
adults with autism are not mandated in the way that special education services
are required by the federal government. This means that when a teenager or
young adult exits the school system or transition program, he or she may be
eligible for services, but the local government is not legally obliged to expand
their services and provide for all. The individuals who are eligible are put on a
waiting list until a spot opens for the service they are requesting.
In July 2001, the board of directors of the Autism Society of America (ASA)
published “A Call to Action: Position Paper on the National Crisis in Adult
Services for Individuals with Autism” (autism-
society.org/upload/images/AdultServices). The author, Dr. Ruth Sullivan, is
herself a parent of an adult with autism and a professional who has created living
and working options for adults with autism.
Her paper is an excellent source of information in regard to the history of
services in the United States, and where we should be heading, as well as a call
to arms for parents and professionals and the government to create what’s
needed.
There are some community agencies that serve people with ASD; however,
in 2001, there were only about twenty-five agencies providing specialized
programs for these adults. These agencies experience high turnover in staff,
because the inadequate Medicaid reimbursement does not allow for paying
decent salaries.
Staff turnover is high, and there are few college programs that train people
about autism and strategies to work with adults with autism. Parents and
professionals familiar with autism can attest to how difficult it is for staff to do
their job—let alone how hard it is on the client with autism—if they have no
training in the client’s form of communication or behavioral strategies.
The cost of autism-specific services is very high. Few families can afford the

cost, no insurance company will cover it, and providers have limited financial
ability to develop more programs.
This means that currently, there is not enough of anything to go around, and
it is not going to get solved overnight with a prayer and a wish.
What must be done. To alleviate the enormous residential need we are
currently facing, Dr. Sullivan suggests that in-home support be provided for
those parents who wish to have their adult children live with them for as long as
possible. Small group homes, apartments with support staff, and access to home
financing should be provided for those who choose to live in their own home.
People with autism would be more effectively employed if they had access
to job coaches who were well-trained and knowledgeable about autism and
could help them learn and maintain appropriate work-related behaviors. Taking
the individual’s interest into account when matching them to a job is also a key
ingredient to successful employment, as it is for anyone.
The reality is, we cannot wait for the government to take action. Parents,
professionals, and other organizations are taking the lead in many places and
creating solutions: programs for adults regarding living arrangements and
employment and college opportunities for those so inclined. These opportunities
have been created out of frustration and need, which is a good example of taking
a negative and turning it into a positive.
Some parents are joining together and creating group homes or nonprofit
organizations to provide living arrangements.
Recently, more developmentally disabled individuals have become self-
employed, which in turn pays for the supports they need in order to work in the
position that has been created for them, based on their wishes.
Some undergraduate programs are creating supports specifically designed
for college students with Asperger’s or more able students with autism. Some
colleges are designing integrated undergraduate programs specifically for the
more academically able with ASD, and will provide necessary supports as well
as opportunities to learn the skills a person may be lacking to be an independent
adult.
FOOD FOR THOUGHT
Employment Tips from Temple Grandin
In her book Thinking in Pictures, Temple Grandin gives some useful information

about how she was able to transition from college to work. Here are a few of the
points she makes:
It is important to make a gradual transition from an educational setting to the
world of work. Starting a job or career part time while still attending a class or
two can make this possible.
The freelance route has been a way that many people with ASD have been
able to exploit their talent area.
Sometimes it is possible to get in trouble at a job by being technically correct
but socially wrong. This happens to people with autism because they have a
hard time being diplomatic and tactful. Temple learned by reading about
international negotiations and using them as models.
Temple has had many mentors. These mentors, whether at college or at work,
helped her by teaching her the social aspects she needed to be successful,
such as how to dress and be groomed appropriately and how to put together a
portfolio showing off her talents, explaining to her the social nuances she did
not understand, and helping others to understand her behaviors and actions.
More recently, a national consortium called Advancing Futures for Adults
with Autism (AFAA) was formed, facilitating the development of a national
agenda affecting areas of adults with autism. Areas covered included housing,
employment, and community life. Input was taken from many families and
advocates all around the country in town hall meetings, and many autism
advocacy organizations were involved. In 2010, this agenda was provided to
federal policymakers who were urged to adopt key aspects of what the AFAA
recommended.
In the area of employment, the AFAA identified many concerns in the
autism community. The following are suggestions from the AFAA on how to
improve the prospects for employment for adults on the spectrum:
Bridge the divide between the school years and adult life. School districts
and autism educators need to recognize that students with autism need to
develop employment skills during the transition years from high school to
college and beyond. There needs to be a continuity of support for young
adults with ASD, their families, professionals, and employers.
Change the mainstream perception of adults with autism. There needs to be

a “presumption of employability,” which currently does not exist. As well,
employers need awareness and training. When thinking of employment
opportunities, the bar needs to be raised. Perhaps by making autism a
diversity issue, it would be easier to place individuals with autism in jobs,
as employers understand and relate to the importance of diversity matters.
Improve the work conditions and career prospects for individuals on the
spectrum. Many such workers are underpaid and passed over for
promotions. There needs to be equitable compensation and career
opportunities that are mutually beneficial for employers and potential
employees. As well, they must continue to maintain public assistance
benefits—including transportation—even if they have jobs.
Provide continual social skills training and life-long support. Without
comprehensive help, people on the spectrum will continue to have low
expectations for their career opportunities, and so will any potential
employers. Technologically savvy and motivated people are needed to
coach, teach, and support those preparing for employment.
For more information, visit afaa-us.org.
FOOD FOR THOUGHT
Do Your Best
The bottom line is this: If you ever want the kind of job that buys you a house, a limo
and anything close to that, you will have to do every job before that one as if it were
the greatest job in the world. Just make believe, if you wind up cooking hamburgers,
that every burger will have a photo of you on the wrapper, saying “cooked by . . .” Do
every job to the best of your ability because you are proud of who you are and
always do your best. If you do that, you will get the most out of your working days.
—Jerry Newport, Your Life Is Not a Label

Where to Find Information and Possible Services
Meanwhile, it is apparent that regardless of the ability level of the person with
ASD, there are challenges and barriers to overcome in order to get the services
that are needed. Although the type of need may be different, any person with
ASD who requires assistance, or their caregiver, should have access to
information and advice. As mentioned earlier, there is not a federal mandate for
services to be provided after the person leaves school. Every state provides
differently, so you will need to find out what applies to your area. If you have
made it this far, you are probably resourceful in terms of asking the right
questions. Here are some suggested places to go for information:
Apply for Supplemental Security Income (SSI). Adults considered disabled
are eligible for SSI. Some states supplement the amount paid by the federal
government. Contact the Social Security Administration (800-772-1213;
ssa.gov) for more information.
Contact your State Council on Developmental Disabilities to find out about
adult services, and contact your state’s protection and advocacy agency to
find out your rights and what you may be entitled to in your state. You can
find those agencies on the Administration of Intellectual and
Developmental Disabilities website, acf.hhs.gov/programs/aidd.
Refer to the free download “Life Journey Through Autism: A Guide for
Transition to Adulthood,” available on the website of the Organization for
Autism Research (OAR),
researchautism.org/resources/reading/documents/transitionguide.pdf.
Visit the U.S. Department of Labor, Office of Disability Employment
Policy, to find information about employment and disability at
dol.gov/dol/topic/disability/index.htm. Also look for your state’s agency
online.
To find out the contact information for the Statewide Independent Living
Council (SILC) in your state, check out the Independent Living Research
Utilization Project website (ilru.org).
To find out about possible medical and Medicaid benefits, it is best to
contact your state agencies; however, if you wish other information, contact

the U.S. Department of Health and Human Services (hhs.gov).
Suggested Reading for All
More and more able adults on the spectrum are blogging and writing books
about their experiences and their suggestions to make life easier for others like
them. Granted, many people with ASD are not as able as these individuals, but
the threads running through are very similar and can be applied to trying to
understand the behaviors of others who are less able.
Some of these authors are listed in the Resources section of this book. As
well, I have included input from many on the spectrum in A Full Life with
Autism. People with autism might find it helpful to read some of these as well.
Employment and Careers
Jerry Newport has a great philosophy about work. He feels that no matter what
job you have, you should do it well. In Your Life Is Not a Label, he gives many
tips about work. He suggests that even entry-level jobs are important as they can
teach you things that are necessary for all jobs, namely: how to follow
instructions, how to be on time, how to dress appropriately, and how to work
independently.
An excellent, practical book is Developing Talents: Careers for Individuals
with Asperger Syndrome and High-Functioning Autism by Temple Grandin and
Kate Duffy. This book explains how to prepare for an interview, how to
prioritize work commitments, and how to deal with sensory overload. There is
an informative and detailed section on the best jobs for people on the spectrum.
A book that might be useful for the more able adult wanting to explore
possible career choices is the Asperger Syndrome Employment Workbook by
Roger N. Meyer, who has Asperger’s. This practical workbook includes useful
worksheets that encourage readers to engage in an exploration of their
employment history, and to identify the work they are best suited for by
analyzing their needs, talents, and strengths.
Temple Grandin suggests developing your special interest or obsession into
an employable skill. Readers who have seen the Emmy Award–winning movie
based on her life (titled simply Temple Grandin) will remember how Temple

became successfully employed in this way, Even though social skills may be
lacking, a person can impress someone with their talents, strengths, and abilities
and be hired. People respect talent, and a person can focus on selling their skills
instead of their personality. Employers will have to understand your needs in
order for a job or career to be successful, but having a special ability will
convince someone that you are worth employing. Employers should be reminded
of the positive attributes that most people with ASD have, such as honesty and
diligence, as well as the challenges you face.
Finding mentors can help a person develop their interests into marketable
skills. Mentors can help the person figure out what kinds of jobs are available for
people with a specific talent, practice social and interview skills, and help with
contacts for possible job openings or clients.
Obviously, not everyone has the capabilities of Grandin or Newport;
however, the concerns of finding a good fit, and a job that is interesting to the
individual, are the same whether the person is more or less able.
Seeking Employment
Scott Standifer, PhD, of the Disability and Policy Studies department at the
University of Missouri, has done research that shows many of the current
practices in interviewing, training, and placing individuals with autism in jobs
have been ineffective. In order to fill the existing gap of information available to
state employment agencies, Standifer wrote a wonderful resource, which is free
online: “Adult Autism and Employment: A Guide for Vocational Rehabilitation
Professionals.” You may wish to provide this to vocational rehab offices you
come in contact with if they do not demonstrate a working knowledge about
autism and employment.
Each state may propose different opportunities, or use different labels to
describe what is available, so check to see what is available locally. Here is a
glimpse at the usual options for finding and keeping a job:
Competitive employment. These types of employment opportunities are
usually good for people who can work at a job with some adjustments but
who will not need support on a continual basis. People who have an
employable skill will find it easier to find work. Networking through family
members, friends, people from your church, or mentors you have had can

perhaps lead to employment. If you are attending college, you may find a
job through contacts made there: people who admire your abilities and
know people who can use your talents. Local unemployment centers, the
classifieds, and websites like Monster.com are also places to look for
openings.
Supported employment. This option provides assistance in areas where
people with ASD need help: job finding, job coaching, skills training, and
employment advice and guidance. The goal is to place the person in a job in
the community that fits in with their interests and abilities. These kinds of
programs, regardless of the ability level of the person, provide each person
with the training and support to maintain employment in the chosen career
field.
Sheltered employment. This is an option for those who will need security in
a work environment where people are knowledgeable about ASD. These
jobs tend to be repetitious, and those who like structure and repetition may
do well in them. However, there are concerns about the pay scale and about
whether there are better options for many who are working in these types of
arrangements.
Customized employment: job carving. Some companies may be able to
customize a job to fit the needs of a prospective employee who may be able
to fulfill part of the job duties but not all. In this case, the job duties an
employee can do are “carved” out, and the other duties are given to another
employee. In this way, sometimes two people actually share one job.
Customized employment: self-employment. Working as a freelancer in a
particular area of interest is a possibility if the person has the discipline that
self-employment requires. However, if the social aspect of marketing is
difficult, this will work only if there is someone who can refer work to the
individual and do their marketing for them. Mentors can be very helpful in
this arena. For those who are on the more impacted end of the spectrum and
would have a hard time getting and keeping a job, this can also be an
alternative as it provides a way for the individual to earn money doing
something he is interested in doing and not be constrained by what “the
system” has or doesn’t have available for him.

As described in my book A Full Life with Autism, those on the spectrum who
are successfully employed share one common trait: that wherever they work,
they are accepted for who they are. Acceptance starts first at home with the
parents recognizing and encouraging the talents and positive aspects of the
differences of their child. These differences could be a basis for employment.
There are now companies being created that create employment based on the
talents of individuals on the spectrum. One of these is Specialisterne (The
Specialists), a Danish for-profit social enterprise business that provides software-
testing services. Specialisterne workers doing data entry are five to ten times
more precise than other contractors, according to one of their clients. These
employees with an autism diagnosis are paid competitive wages.
A good resource for those on the more able end of the spectrum is Asperger
Syndrome Training and Employment Partnership (ASTEP). ASTEP promotes
the inclusion of individuals with Asperger’s syndrome and high-functioning
autism in competitive employment. Among other ways, they do this by
establishing relationships between national employers and high-quality support
programs for adults with autism, and awareness and training campaigns aimed at
Fortune 1000 companies. For more information, go to asperger-employment.org.
There are now more opportunities available for those on the less able end of
the spectrum. Successful work stories of individuals with developmental and
intellectual disabilities can be found on realworkstories.org.
Positive Aspects of Hiring Someone with ASD
Prospective employers should know that there are positive benefits to hiring
someone with ASD. According to the U.S. National Association of Colleges and
Employers, Bureau of Labor Statistics, U.S. Department of Labor, the following
are the top ten skills and attributes that employers look for in prospective
employees:
1. Honesty/integrity
2. Strong work ethic
3. Analytical skills
4. Teamwork

5. Computer skills
6. Time management/organizational skills
7. Communication
8. Flexibility
9. Interpersonal skills
10. Motivation/initiation
Honesty, dependability (strong work ethic), analytical skills, computer skills,
and motivation (provided the job is in an area of interest) are traits that can be
found in abundance in the ASD population. The other skills are seen in many on
the autism spectrum. For some, teamwork, flexibility, time management, and
communication could be more of a challenge. But these are skills that can be
taught or adapted. For example, if a person has a hard time working on a team
because of sensory or communication challenges, one person on the team could
be designated as the “go-to person” with whom the employee with autism
interacts in regard to projects and information resulting from meetings.
But the most important traits—honesty and a strong work ethic—are in
abundance with those with autism. Unless there is another comorbid diagnosis, a
person with autism is honest to a fault. If you ask, they will tell you truthfully
what they think (e.g., “No, I don’t think that dress looks nice on you”). They
won’t be the one stealing from the cash drawer. And they won’t be calling in sick
because they had too many tequila shots the night before.
RESOURCES
Adult Autism and Employment: A Guide for Vocational Rehabilitation
Professionals by Scott Standifer
Achieving Independence by Chantal Sicile-Kira and Jeremy Sicile-Kira
Asperger’s on the Job: Must-Have Advice for People with Asperger’s or
High-Functioning Autism and Their Employers, Educators, and
Advocate by Rudy Simone
Asperger Syndrome Employment Workbook: An Employment Workbook for
Adults with Asperger Syndrome by Roger Meyer

ASTEP: asperger-employment.org/employment-resources
Paul Wehman, et al.
Autism Life Skills by Chantal Sicile-Kira
Disability Benefits 10: Working with a Disability in California: DB101.org
JobTIPS: do2learn.com/JobTIPS/index.html
Real People Real Jobs: Stories from the Front Line—Institute for
Community at University of Massachusetts Boston: realworkstories.org
Temple Grandin: hbo.com/movies/temple-grandin/index.html
College
There are different types of colleges: vocational or technical colleges,
community colleges, and universities or four-year colleges. Vocational or
technical colleges usually teach a skill in preparation for a specific job or
employment goal. Community colleges are only two-year programs, with
students transferring to four-year colleges or universities to complete their
education.
Many of the more able people with ASD are successful at college. Some of
the interests or obsessions they have can be pursued in a course of study. The
challenge may well be translating that knowledge or degree into stable
employment, but that is a challenge all students face. Some feel so comfortable
at college that they develop their interests into a career on campus. Both Stephen
Shore and Lars Perner in articles on the web describe college as being “heaven”
either for themselves or for others they know on the spectrum. Where else can a
person expound on their favorite topic without interruption for a few hours at a
time? As well, the college campus can be a mini-society, making it easier and
less stressful to manage than society at large.
There are more and more programs available to help college students with
autism. Some cater even to those who need more academic supports and who
need more help to learn life skills. Disabled Student Support Services at colleges
are becoming more and more understanding about the types of supports a college

student with autism may need.
Some students prefer community or local colleges as they can continue to
stay at home. Dormitory living can be difficult unless the student has a private
room. Living with unknown roommates in a rental unit also can be tricky.
Community colleges usually offering two-year programs can be a challenge if
the student wishes to continue at a four-year college. The student will have to
make sure to plan carefully what classes to take to make sure they apply. Also, if
adjusting to different environments is a challenge or stressful, the student will be
going through that step twice.
Differences Between High School and College
It is important for both the parent and prospective college student to understand
that they have different legal rights and responsibilities in college. While a
student is still in high school or the transition program, he or she is protected
under the Individual with Disabilities in Education Act (IDEA). Once a student
graduates from high school with an academic diploma, or ages out of the school
district (twenty-two to twenty-five, depending on the state), those protections
end. The college student with a disability is protected under the Americans with
Disabilities Acts (ADA) and other laws.
“Catching the Wave from High School to College: A Guide to Transition,”
available online, is a great publication designed to help students with disabilities,
parents, and high school educators understand the differences between being a
student in high school and one in college. This is a good tool for preparing
everyone involved for this important transition.
One of the major differences is that in high school, the parent is legally
responsible and may advocate for their child at IEP meetings, and request needed
accommodations and modifications. In college, the student must be able to ask
for their own modifications and needed supports. A college student may sign a
document allowing the release of information to the parent, but is not obliged to.
The amount of contact or input a parent has is really up to the discretion of the
college with permission from the student.
Another major difference between high school and college is that certain
accommodations are possible under ADA, but modifications in the homework or
coursework are not allowed. For example, a college student with a disability may
request extended time for test taking or for completing assignments, but may not

ask for a shorter test or to hand in a three-page paper instead of a six-page paper.
For this reason, it is important that a high school student who wants to go to
college not have modified school work the last year in high school.
It’s important for both the parents and the student to realize that college is a
privilege, not a right. A student who struggles in a public high school is
protected because the school is required to serve the student. This is not the case
in college. It is up to the student to ask for and get the help he or she needs; a
college is not required to serve a student who is failing or having trouble
adjusting.
For all the reasons above, it is important that the student learn self-advocacy
skills while still in high school before reaching the age of eighteen or before
exiting school district services.
Getting Support for a Successful and Enjoyable College Experience
Colleges offer services and supports for students with special requirements.
Accommodations can be made as specified under the Americans with
Disabilities Act (ADA). However, not all colleges are familiar with ASD and
your particular needs. Here are some suggestions for making college a rewarding
experience:
Give information to those you think may need to know about the ASD and
how it affects you, the challenges you face, and what strategies can be used
to help you.
Find a sympathetic school counselor or mentor. This person can help in
many ways, for example, by helping you find a group on campus that
shares your special hobby or interest.
Ask your school counselor or mentor which teachers would be more
accepting of your difficulties and willing to make you comfortable with
learning in their class.
The same kinds of support that helped in secondary school will be
beneficial at college, and telling your guidance counselor what those were
is a good idea. For the visual learner, written schedules, lists, and visual
aids for studying such as graphs, charts, and videos are helpful. For the

auditory learner, tape-recording lectures or having a note-taker works well.
Textbooks on tape can be another useful tool.
Test-taking accommodations can be requested such as a quiet room separate
from other students and more time to take the test.
RESOURCES
Realizing the College Dream with Autism or Asperger’s Syndrome: A
Parent’s Guide to Student Success by Ann Palmer
Students with Asperger Syndrome: A Guide for College Personnel by
Lorraine E. Wolf, PhD, et al.
A Full Life with Autism by Chantal Sicile-Kira and Jeremy Sicile-Kira
Succeeding in College with Asperger Syndrome: A Student Guide by John
Harpur, Maria Lawlor, and Michael Fitzgerald
Beyond Brochures: autismcollege.com/blog/2012/01/25/beyond-brochures
“Catching the Wave from High School to College: A Guide to Transition”
edited by Carl Fielden, et al.:
grossmont.edu/dsps/transition/transition00_default.asp
Financial Help for Disabled Students: disabled-world.com/disability/finance
Going to College: going-to-college.org
Indiana Resource Center for Autism: Academic Supports for College
Students with an Autism Spectrum Disorder:
iidc.indiana.edu/index.php?pageId=3417
Lars Perner’s website: larsperner.com/autism/colleges.htm
Think College: thinkcollege.net
Living Arrangements
At some point in time, you may be leaving the family home. As Jerry Newport
points out in his book, it is better to start that transition while your parents are

still well. That way, you will still have the support of people who love and care
for you and whom you trust during the period of transition that you will be
facing.
Obviously, living arrangements are a personal and family decision based on
comfort level, needs, and budgets. If anything other than a totally independent
situation is being considered, then it is important that the individual with ASD
and/or a family member look into the company that is providing or supervising
the living arrangements. Make sure the company has a mission or philosophy
that fits in with the needs of the prospective resident.
There is a lack of available housing for those on the autism spectrum.
Research indicates that 69 percent of adults with a disability reportedly live with
their parents and guardians. One study, titled “Opening Doors,” offered some
ideas and solutions that could be created for those of different ability levels
needing more or less supports. Some of the challenges uncovered in this study
conducted by the Urban Land Institute Arizona, Southwest Autism Research and
Resource Center, included a lack of consistency in the definition of residential
options and in a lack of guidelines in terms of designing for those with autism.
As well, there were challenges in obtaining needed capital for building and in
terms of service providers.
There is general agreement among adults on the spectrum for the need for
quiet and safe environments as well as the importance of color. For those who
have sensory challenges and acute hearing, living in an apartment building can
be a nightmare.
Some self-advocates in the autism community believe in a full-inclusion
model; others believe that we need to be open to different options as some may
prefer or need autism-specific accommodations.
It is important that whatever option is chosen, safety, communication, and
personalized training of support staff be planned for. Whatever setting is chosen,
the individual needs of each person must be taken into account.
FOOD FOR THOUGHT
Socializing
Many young adults meet each other at places that cultivate a common interest.
These should not be “negative” sites such as night-clubs, which are notoriously
socially threatening environs for our people. Places like a bookstore that features

poetry readings, health club, yoga club, running group, chess club, or any interest
group are a good bet for our people, who have little problem expressing an interest in
certain subjects. In these places, our extreme interest, which may not be appreciated
ordinarily, might even come to be a social advantage.
Housing and Support Options
There are different options available, depending upon the adult’s functional
living skills, whether the person likes being alone or not, as well as available
funding from the government or the adult and his or her family. Not all housing
models are available in all states. Below are some of the existing options:
Group homes. These are supervised and supported care facilities in more
typical homes located in the community. They exist in every state and are small,
residential homes usually owned by the provider agency, usually have eight or
fewer occupants, and are staffed twenty-four hours a day by trained agency staff.
Supported living programs. These provide residential services to those
who live in self-owned or leased homes in the community, and are designed to
promote full inclusion of the person in the community as they work toward their
long-term personal goals. The core philosophy here is that anyone, regardless of
current skills sets, can benefit from supported living and that programming and
instruction are directed by the resident and not by the program.
Supervised living programs. These provide services to individuals with
more supervision and direction than might be provided in supported living
programs, but less than in a group home structure. These residences may be
small with usually no more than one or two adults with autism per residence,
scattered throughout the same apartment building or housing complex, which
allows for greater staff accessibility and oversight.
Transitional models. These are short-term living arrangements of usually
one month to two years, with the goal of transitioning the person back to the
previous environment or into a new residence. These are for those who are
expected to live independently once they complete the program that provides
intensive life skills, who are attending a college that provides support, or who

have severe behavior disorders and require in-patient behavioral evaluation and
intervention.
Agricultural community/farmstead programs. Farmstead programs
typically combine residential living arrangements, usually several single-family
homes or individual apartments in multi-unit dwellings, located on-site or in
nearby locations, and include agricultural science and community-based
employment.
Intermediate Care Facility for individuals with Mental Retardation
(ICF-MR). The funding for this facility-based program, which includes the
support services as well as the facility, stays with the facility, not the person.
Programs range from large congregate settings to smaller community-based
group homes. The ICF-MR usually serves individuals with complex needs, who
are medically fragile and multichallenged.
Resources About Housing
To find out about available housing services in your area, and to get on
waiting lists, you need to contact local agencies in your area. If you are
unsure of where to go for information, contact your state’s protection and
advocacy office.
To find the contact information for centers for independent living (CILs) in
your state, visit the National Council on Independent Living website
(ncil.org).
The FRED Conference is a national coalition of special needs professionals
and families. Through collaborations, FRED advances adult living options
for people with disabilities to live with meaning and purpose, which
includes housing, employment, and recreation for current and future
generations. For more information, visit fredconference.org.
For more information about housing and supports, visit Autism Speaks and
download their free Autism Services Housing and Residential Supports
Toolkit at autismspeaks.org/family-services/housing-and-residential-
supports.

Helpful Strategies for Work, College, and Everyday Living
Adults with ASD face challenges in certain areas. For those who are not
cognitively disabled, or who are on the mid to higher end of functioning ability,
there are many strategies that can be put in place to help.
FOOD FOR THOUGHT
Partners of Adults with ASD
If you are in an intimate relationship with someone who has Asperger syndrome, you
are one of the most important people in their lives. How you approach and cope with
problems can make a difference to how he copes with many of the difficulties that
having Asperger syndrome can present him with. This is not to say that you will have
to take responsibility for everything your partner does, but it is important that you are
aware that there are some things that you will be naturally better at than he is.
—Maxine C. Aston, The Other Half of Asperger Syndrome
For Challenges with Social Communication and Contact
Getting and keeping a job or career, or signing up for and attending college, can
be difficult for people with ASD. The social skills that are necessary to network,
ask questions, and understand the true meaning (as opposed to the literal
meaning) of what is being said, as well as to interpret nonverbal communication,
are areas in which people with ASD may be lacking. However, there is much
that can be done to overcome this obstacle:
Much information can be accessed through the Internet now without
dealing directly with another person. This can be a good way to make
primary contact when trying to network for jobs.
If possible, find mentors who admire your talent and know about your
eccentricities and who can help you turn your talent into a career, or put you

in touch with people who can help you find work or get through school.
Decide who at work or college needs to know about your ASD and tell
them how it affects you in the workplace. In his book Beyond the Wall,
Stephen Shore has included a sample letter he helped develop for the
Asperger’s Association of New England. This letter, addressed to
employers, explains the difficulties the person writing it has with reading
nonverbal signs and understanding what it is like to be in someone else’s
shoes, and the situations that can result, as well as suggestions that would
help the person.
Practicing areas that you are not comfortable with, such as job interviews,
discussion with teachers, or going on a date or outing with a peer, can be
very helpful in relieving some of the anxiety.
For Problems with Finding Your Way Around
Many individuals with autism have difficulty going from one place to another,
whether it’s at school, on a college campus, or in shopping malls and big
buildings. This can be a problem for getting to classes on time or accomplishing
your job. What you can do:
Go around the place you will be needing to learn how to navigate a few
times before starting school or your job. It helps if you can have someone
with you who is already familiar with the building. In some areas you may
need to ask permission for access. If possible, walk the route from one
place to another that you will have to take.
Take pictures or draw the different landmarks that are on the path from one
place to another. List on a piece of paper or dictate into a mini-recorder the
order of the landmarks, and where you need to turn or stop or take another
direction.
Make a small guidebook with the pictures and notes, including the times at
which you must leave one place and go to the next.
Draw a map if you think it will be helpful to you, of all the corridors or
alleyways or streets and landmarks.

Practice navigating through the areas you have mapped out. Using a bicycle
can be a viable means of getting around large campuses or small towns.
For Daily Living
Keep in mind that the kind of strategies that help you with organizing your
schoolwork or job will help you with your daily living skills. Perhaps you have
already been using some of these while living at home. Some things that may be
helpful are color-coding for files of paperwork and bills and schedules of your
daily, weekly, and monthly activities and chores.
For example, some people find it helpful to do certain chores (laundry,
vacuuming, food shopping) on certain days and have them marked on the
calendar. Other responsibilities with a home that crop up less often, such as
paying the bills, can be noted on the calendar to remind you when they need to
be done.
For Sensory Processing Challenges
Both Temple Grandin (Thinking in Pictures) and Liane Holliday Willey
(Pretending to Be Normal) have much information to share about sensory
difficulties. Getting an occupational therapist who has had sensory-integration
training to develop a program to help you in this area can be very useful. Look at
Chapter 5 for therapies that address sensory issues. Meanwhile, there are a few
things you can do:
Auditory sensitivity can be minimized for some through auditory
integration training. Meanwhile, wearing earplugs may be helpful in
curtailing your sensitivity to sound. Make sure you can still hear people
talking to you, as well as emergency vehicles and signals such as fire bells.
If it doesn’t distract you from your work or studies, wear headphones and
listen to music you enjoy at low volume. Temple cautions against using
these strategies all the time, as some exposure to noise can help desensitize
a person, and there is a need to get used to some everyday noise.
For visual sensitivity, try wearing sunglasses, a hat with a brim, or a visor to
minimize the amount of light reaching your eyes, making sure you can see

well enough to safely continue with what you are doing.
If you suffer from tactile sensitivity, tell those around you (at work, college,
your living environment) that you do not like to be touched. Wear only
fabrics that you like the feel of. If you enjoy deep pressure, there are
weighted vests available. However, carrying a heavy backpack or shoulder
bag or sewing pockets of little weights into your coat or sweater may work
just as well and look better. Rub your skin with light or heavy pressure
(depending on your preference) when you are alone, perhaps when getting
dressed. If you feel the need to put things in your mouth, then chew gum.
For those with olfactory sensitivity, put some of your favorite scent on a
small piece of material, the inside of your elbow, or a cotton ball, so that
you can smell this scent when others overwhelm you. If you can, tell those
who are in close proximity to you all day long about your sensitivity and
ask if they can refrain from wearing perfumes and other products with
strong smells.
If food sensitivity is an issue, think of the foods you can tolerate. Identify
the restaurants or cafes that serve those foods. If invited to someone’s
home, you may wish to tell them you can eat only certain foods. If your
food sensitivity is extreme and you are unlikely to find what you can eat in
a restaurant or at someone’s home, be prepared to make and carry your own
foods when you are spending time outside your home.
Having a Social Life and Close Relationships
Leisure and Recreational Activities
Having a social life can sometimes be a challenge even for people who do not
lack social skills. Some people are more gregarious than others, and those people
tend to have more relationships and recreational activities. However, it must be
remembered that it is not quantity but quality that counts.
For people with ASD, building relationships and participating in recreational
activities can be even more difficult because of the impairment of social
interaction skills, and the lack of knowledge that most people in the leisure and
community services have when it comes to ASD. However, due to the increase

in those being diagnosed with autism, people are at least becoming more aware
of what they are. Rome was not built in a day, and even though laws protect your
right to have access to leisure, recreational, and cultural activities in the
community just like every other citizen, in reality people out there still suffer
from a lack of knowledge. One way you can help in this area is by spreading
knowledge of ASD.
When looking for leisure activities, think about the talents, abilities, and
interests that you have and find out if there is a local group that meets around
that subject. You may need to take any sensory-overload issues you have into
consideration when looking at activities to join. Some activities may have more
social pressure than you are ready to handle. Good places to start looking are
local facilities such as leisure or sports centers, swimming pools, libraries, art
galleries, and adult education classes. Other places where you may find groups
are bowling alleys and bowling greens, cinemas, ice and roller skating rinks,
gyms, and local sports clubs.
Depending on your ability level and the level of support needed there are
different ways to access activities. You may be able to do it on your own, or with
a parent or family member to start off with. If you need a high level of support
and live in a residential facility, paid staff may accompany you. Sometimes there
are autism-friendly volunteer organizations or befriending schemes in your area.
Parents may already be providing a “circle of support” of family friends and
caregivers who can help you access recreational activities.
Social and Internet Groups
If you wish to socialize with other adults with ASD, some local chapters of
national organizations listed in the Resources section have meetings and
organized activities. Other organizations provide social outings, but are not
necessarily ASD-specific.
The Internet has become a great resource for people with ASD. Some people
prefer to develop relationships this way and can communicate with others
through the Internet at any time that is convenient to them. There are online
support groups, such as GRASP, among others. If you do not have access to a
computer at home, visit your local library.

Close Relationships
Many people with ASD have close relationships and intimacy with others. Some
get married and have children. There are difficulties that pose themselves, like in
any marriage, and the areas of intimacy and responsiveness to the other are
different for each person, depending on issues of sensory sensitivity and level of
social exchanges that the partners are comfortable with. Reading some of the
books by those with ASD who are married, to either another person with ASD or
a neurotypical person, is useful. Some of the married authors worth reading are
Michael John Carley, Brian King, Judy Endow, Stephen Shore, Mary and Jerry
Newport, Gisela and Christopher Slater-Walker, Liane Holliday Willey, Maxine
Aston, and Donna Williams (see the Resources section for details).
Tips for All Who Know Someone with ASD
Some people with ASD manage well with little or no support. For others, social
and communication issues, or perhaps learning disabilities, can get in the way of
being as independent as possible.
The Challenges and What Can Help
Parents can help their children by instilling values and a sense of self-esteem and
pride, encouraging them to see their individuality as something to be respected
and appreciated, eccentricities and all. Parents can also help by creating
networks of people who can be available for different areas of need for their
adult child. Friends of the family or church members who have certain
professional skills can help in their area of expertise. This is one way that
community members can be helpful. Whether you are a plumber or an
accountant, it would give peace of mind to a friend to know that you are willing
to help if the need arises. Parents can also educate their child about safety,
police, and emergency situations. (See Chapter 8 for more about establishing
community ties.)
Depression in Adults

Many adults with ASD suffer at one time or another from depression or mental
illness. This is not part and parcel of the ASD but can be exacerbated by the
challenges they face in trying to find a place in our society. Some may also be
suffering from PTSD as a result of having been bullied or abused when younger.
Friends and family members need to watch for signs that all is not well in order
to get them the counseling or support they need.
Partners of Adults with ASD
As ASD becomes more and more recognized and diagnosed, many adults are
realizing for the first time that they are autistic or have Asperger’s. Sometimes
this happens after the person is already married; it may even be that being
married her provoked getting the diagnosis. The spouse may have chosen her
mate because he was calm and reliable, but after some years came to think of her
husband as cold, unemotional, and unromantic, and realized that something was
amiss.
Finding out that a partner has ASD can provoke different feelings. One of
them is anger at missing out on aspects of a marriage that you were looking
forward to. Another feeling is relief that your partner is not trying to shut you
out, he is just unable to give you the emotional response you need. Other
feelings can be acceptance and understanding and letting go of the resentment
you felt, because now you know he is not being thoughtless; he really does not
get it. The positive aspects of having a spouse with ASD include the fact that he
will most likely always be loyal and honest.
Maxine C. Aston in The Other Half of Asperger Syndrome and Liane
Holliday Willey in Asperger Syndrome in the Family: Redefining Normal
describe the differences between the expectation of the spouse with Asperger’s
versus the more neurotypical one, and how it is important for each spouse to
recognize the differences and understand where they come from. An Asperger
Marriage by Gisela and Christopher Slater-Walker is very good, as it gives the
point of view of both spouses.
Two more recent useful books both by Rudy Simone are 22 Things a Woman
with Asperger’s Syndrome Wants Her Partner to Know and 22 Things a Woman
Must Know If She Loves a Man with Asperger’s Syndrome.

Closing Comments
I am a person who is autistic.
What I want to say is that the hardest part of autism is the communication.
Music is helpful.
I like that I can see colors in everything.
Help us by encouraging us.
—JEREMY SICILE-KIRA
One’s first step in wisdom is to question everything—
and one’s last is to come to terms with everything.
—GEORG CHRISTOPH LICHTENBERG (1742–1799)
EMILY Perl Kingsley wrote a wonderful story in 1987 titled “Welcome to
Holland” in which she described how having a child with a disability is like
planning a trip to Italy, but then landing unexpectedly in Holland. The point of
the story is that Holland may not be Italy, but it is still a nice place to be. Years
later, Susan F. Rzucidlo wrote “Welcome to Beirut (Beginner’s Guide to
Autism)” about how having a child with ASD is more like landing in Beirut with
bombs dropping everywhere, with occasional ceasefires, but never knowing
when the next enemy attack will begin, or where it will come from, or who the
enemy really is. I sympathize.
Much has changed since this book was first published almost ten years ago. I
know more about autism than I ever thought I would. Some of my best teachers
have been people on the spectrum.
My son, Jeremy, often likens his story to that of Helen Keller—and mine as
Anne Sullivan, her first teacher. But, to be honest, it is my son who has taught
me. He has taught me patience, compassion, and what is truly important in life.
Jeremy is honest, real, and lives in the moment. He has no preconceptions or
judgment about people. This I find to be true of most on the spectrum. We can

all learn from their honesty and realness.
As a person close to someone with ASD, your role is extremely important to
him, even if he doesn’t show it. Your main purpose will be to explain or translate
to him the complexities of the neurotypical world and, in turn, to translate to the
neurotypical world the eccentricities of the person with ASD. You will be a sort
of United Nations interpreter; a most important role to fill. Just as a stranger in a
strange land needs to have customs explained to him, so will the individual with
ASD need explanations. And as the adopted country needs to have some
understanding of the foreigner who has landed in their midst, so will the
neurotypicals of our society need to learn from you about people with ASD so as
to be more accepting and tolerant of differences.
Parents need to do all they can to help their children, and as early as they
can. Some will be “recovered” and many will not be. The focus should be to
teach them how to make sense of the world, and give them the tools to function
in it so that they can grow up to live independent, fulfilling lives. Helping your
child learn by focusing on his area of strength or passion can make life enjoyable
for him and may pave the way for connecting with other people and possibly
employment in future years.
As a parent you may have knowledge, but you will not always have control.
You must learn to recognize that which you can change, and that which you
cannot. And this advice holds true whether you are thinking about a behavior
your child has or a policy your school district is sticking to. In some instances,
the only thing you may be able to change is your attitude.
Professionals should recognize that autism includes the family. You may
spend a few hours a day or month with this person, but for his loved ones, it is
24/7. You need to respect the fact that you may be an expert in your field, but
while the person is growing up at home, the parent is still the expert on their
child. Together you offer strong support and assistance to the person with
autism.
Friends and extended family can lend support by learning about ASD, and
being open-minded. Do not judge the person with ASD or the caregivers; realize
that they may all be a bit overloaded. Continue to extend invitations and keep the
lines of communication open. If you can help in any way, offer to do so. The
offer will be appreciated even if it is not taken up.
The general public can be instrumental in how a person with ASD or the
caregivers feel in the community. Acceptance and a nonjudgmental attitude
toward those who act differently will do wonders to ease the stress. We are all

part of the same community, and it does take a village to raise a child and make
the place we live into a neighborhood.
Some parents say that if it weren’t for autism, they wouldn’t have met the
wonderful people they have come to know, that autism has given them a raison
d’être. As for me, I tend to believe that even without autism in my life, I would
have met some wonderful people and become committed to some worthy cause.
This is not to speak disparagingly of all the fantastic autism-related friends my
family has made over the years. It is more a comment about the fact that I could
do fine without having to deal with the individuals who don’t “get it” or all the
added stress of administrative paperwork, phone calls, and resource-searching
one needs to do in order to get any assistance.
What is certain, however, is that I have learned much about what is truly
essential in life. I have learned how fortunate I am that my body and mind work
in sync, and how much inner strength I possess. I have also learned literally to
stop and smell the roses and to take pleasure in the simple moments of daily
living between the bombs falling. I have learned that heightened senses can
bring both pain and pleasure, and that passing the time of day by staring at dust
particles in the sunlight, feeling the sand sift through your fingers, or your body
floating weightless in a pool, doesn’t seem so crazy after all. In fact, it’s very
relaxing. Try it sometime.

Resources
LISTED here are resources of two kinds: those that have been repeatedly
mentioned in this book and merit being grouped here for easy access, and those
that have not been mentioned but that are good additional resources. Other
excellent resources appear throughout the book.
ASD-Specific National Organizations
There are many great nonprofit local and national organizations now active in
the United States. Below are listed the ones with major national outreach.
Autism National Committee (AutCom)
autcom.org
AutCom is dedicated to social justice for all citizens with autism through a
shared vision and a commitment to positive approaches, and encourages
its individual members and organizational partners toward self-direction
and self-empowerment.
Autism One
autismone.org
Autism One is a parent-driven organization that provides education and
supports advocacy efforts for children and families touched by autism.
Autism Research Institute (ARI)
autism.com
ARI is a support network providing online and in-person educational events
for parents and caretakers and continuing education credit for
physicians, teachers, dietitians, and occupational therapists.

Autism Society of America (ASA)
autism-society.org
ASA exists to improve the lives of all affected by autism by increasing
public awareness about the day-to-day issues faced by people on the
spectrum, advocating for appropriate services for individuals across the
life span, and providing the latest information regarding treatment,
education, research, and advocacy. There are local chapters.
Autism Women’s Network (AWN)
autismwomensnetwork.org
AWN is an online community of autistic girls and women, their families,
friends, and supporters, and provides a place where all can share their
experiences among a diverse, inclusive, supportive, and positive
environment.
Autistic Global Initiative (AGI)
autism.com/index.php/tests
AGI, a project of the Autism Research Institute, is comprised of a committee
of adults diagnosed with autism spectrum conditions and exists to foster
the development of adults on the autism spectrum and those who work
with and for them.
Autistic Self-Advocacy Network (ASAN)
autisticadvocacy.org
ASAN is run by and for autistic people, and activities include public policy
advocacy, community engagement to encourage inclusion and respect
for neurodiversity, quality of life–oriented research, and the
development of autistic cultural activities. There are local chapters.
Autism Speaks
autismspeaks.org
Autism Speaks has grown into the world’s leading autism science and
advocacy organization, dedicated to funding research into the causes,
prevention, treatments, and a cure for autism; increasing awareness of
autism spectrum disorder; and advocating for the needs of individuals
with autism and their families. There are local chapters.

First Signs
firstsigns.org
First Signs aims to educate parents, healthcare providers, early childhood
educators, and other professionals to ensure the best developmental
outcome for every child. Goals include improving the screening and
referral practices and lowering the age at which young children are
identified with developmental delays and disorders.
Global and Regional Asperger Syndrome Partnership (GRASP)
grasp.org
GRASP’s mission is to improve the lives of adults and teens on the autism
spectrum through peer supports, education, and advocacy with an
emphasis on community outreach and individuals advocating for their
own needs. There are local chapters.
National Autism Association (NAA)
nationalautismassociation.org
The mission of the NAA is to respond to the most urgent needs of the autism
community, providing real help and hope so that all affected can reach
their full potential. There are local chapters.
Organization for Autism Research (OAR)
autism.com
OAR uses applied science to answer questions that parents, families,
individuals with autism, teachers, and caregivers confront daily. Free
downloadable resource guides on numerous autism topics are available.
Profectum
profectum.org
Profectum aims to create a community of caring families, clients,
multidisciplinary professionals, and leaders in the field, and is
committed to promoting treatment approaches that address the unique
needs of the individual at any stage of development from early
childhood to adulthood, integrating the best treatment models across
disciplines and intervention approaches.

Talk About Curing Autism (TACA)
tacanow.com
TACA is dedicated to educating, empowering, and supporting families
affected by autism. For families who have just received the autism
diagnosis, TACA aims to speed up the cycle time from the autism
diagnosis to effective treatments. There are local chapters.
Other Related Nonprofit Organizations—Not Autism Specific
FRED
FREDconference.org
The FRED Conference is a national coalition of special needs professionals
and families. Through collaborations, FRED advances adult living
options for people with disabilities to live with meaning and purpose,
which includes housing, employment, and recreation for current and
future generations. FRED is an annual event organized by Golden Heart
Ranch (goldenheartranch .org).
National Council on Independent Living (NCIL)
ncil.org
NCIL advocates for civil rights and independence for people with disabilities
worldwide.
Safe Minds
safeminds.org
Safe Minds exists to eliminate mercury from all medical products, including
vaccines, and substantially reduce other environmental exposures to
mercury.
Government Agencies
Administration of Intellectual and Developmental Disabilities (AIDD)
acl.gov/Programs/AIDD

Social Security Administration (SSA)
ssa.gov
State Council on Developmental Disabilities
acl.gov/Programs/AIDD/Programs/DDC/index.aspx
State protection and advocacy agencies. Find the one in your state on the
Administration of Developmental Disabilities website.
U.S. Department of Education
ed.gov
U.S. Department of Health and Human Services
hhs.gov
BOOKS
Although I am a big fan of the Internet, books are often recommended over
websites because:
The reader knows who the information is coming from and can validate
the source.
Published books (unless self-published) have gone through a certain
amount of scrutiny and fact-checking by different individuals other than
the writer before being published.
The book will exist indefinitely.
Books can be downloaded or listened to on audio.
There are many excellent books currently available. Some classics are listed
below, as well as some newer ones.
Memoirs by Those on the Autism Spectrum
Asperger Syndrome in the Family: Redefining Normal and Pretending to Be
Normal: Living with Asperger’s Syndrome by Liane Holliday Willey

Atypical: Life with Asperger’s in 201/3 Chapters by Jesse A. Saperstein
Beyond the Wall: Personal Experiences with Autism and Asperger’s
Syndrome by Stephen Shore
Elijah’s Cup: A Family’s Journey into the Community and Culture of High-
Functioning Autism and Asperger’s Syndrome by Valerie Paradiz
Episodes: My Life as I See It by Blaze Ginsberg
Freaks, Geeks and Asperger Syndrome by Luke Jackson
Learning the Hidden Curriculum: The Odyssey of One Autistic Adult by
Judy Endow
Thinking in Pictures: And Other Reports from My Life with Autism by
Temple Grandin
Your Life Is Not a Label by Jerry Newport
Books Written by or Contributed to by Those Who Communicate by Typing
Autism and the Myth of the Person Alone edited by Douglas Bilken
Carly’s Voice: Breaking Through Autism by Arthur Fleischmann and Carly
Fleischmann
How Can I Talk If My Lips Don’t Move? Inside My Autistic Mind and The
Mind Tree by Tito Rajarshi Mukhopadhyay
I Am Intelligent: From Heartbreak to Healing—A Mother and Daughter’s
Journey Through Healing by Peyton Goddard and Dianne Goddard with
Carol Cujec, PhD
Ido in Autismland: Climbing Out of Autism’s Silent Prison by Ido Kedar
The Purple Tree and Other Poems by Sydney Edmond
Reasonable People: A Memoir of Autism and Adoption by Ralph James
Savarese and DJ Savarese
Memoirs by Parents
All I Can Handle: I’m No Mother Teresa by Kim Stagliano
Let Me Hear Your Voice: A Family’s Triumph Over Autism by Catherine
Maurice
Raising Blaze: A Mother and Son’s Long, Strange Journey into Autism by
Debra Ginsberg
The Siege and Exiting Nirvana by Clara Claiborne Park
Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden

World of Autism by Portia Iversen
Parent and Family Support
F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint for Autism by Greg
Zibricky, CFP, ChFC, CLU, CASL
Grandparent’s Guide to Autism Spectrum Disorders: Making the Most of the
Time at Nana’s House by Nancy Mucklow
One on One by Marilyn Chassman
Sharing Information About Your Child with Autism Spectrum Disorder:
What Do Respite and Alternated Caregivers Need to Know? by Beverly
Vicker, MS
Special Children, Challenged Parents: The Struggles and Rewards of
Raising a Child with a Disability by Robert A. Naseef
The Special Needs Planning Guide: How to Prepare for Every Stage in Your
Child’s Life by John Nadworny, CFP, and Cynthia Haddad, CFP
Steps to Independence by Bruce Baker and Alan Brightman
A Stranger Among Us: Hiring In-Home Support for a Child with Autism
Spectrum Disorders or Other Neurological Differences by Lisa
Ackerson Lieberman
Understanding Death and Illness and What They Teach About Life by
Catherine Faherty
For Siblings
Everybody Is Different: A Book for Young People Who Have Brothers or
Sisters with Autism by Fiona Bleach
Siblings: The Autism Spectrum Through Our Eyes by Jane Johnson
Siblings of Children with Autism: A Guide for Families (Topics in Autism) by
Sandra L. Harris and Beth A. Glasberg
Sibshops: Workshops for Siblings of Children with Special Needs by Donald
J. Meyer and Patricia F. Vadasy
For Children on the Spectrum to Read
All Cats Have Asperger Syndrome by Kathy Hoopman
Asperger’s Huh? A Child’s Perspective by Rosina G. Schnurr and John
Strachan
Different Like Me: My Book of Autism Heroes by Jennifer Elder and Marc

Thomas
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger
Syndrome and High-Functioning Autism by Elaine Marie Larson and
Vivian Strand
The Survival Guide for Kids with Autism Spectrum Disorders (And Their
Parents) by Elizabeth Verdick and Elizabeth Reeve, MD
What It Is to Be Me! An Asperger Kid Book by Angela Wine
Bullying and Risk Reduction re Abuse
Perfect Targets: Asperger Syndrome and Bullying—Practical Solutions for
Surviving the Social World by Rebekah Heinrichs
The Risk Reduction Workbook for Parents and Service Providers: Policies
and Practices to Reduce the Risk of Abuse, Including Sexual Violence,
Against People with Intellectual and Developmental Disabilities by
Nora J. Baladerian, PhD
The Risk Reduction Workbook for People with Intellectual or Developmental
Disabilities: How to Reduce the Risk of Abuse Including Sexual Abuse
by Nora J. Baladerian, PhD
Educational Advocacy
The Everyday Advocate: Standing Up for Your Child with Autism or Other
Special Needs by Areva Martin, Esq.
The IEP from A to Z: How to Create Meaningful and Measurable Goals and
Objectives by Diane Twachtman-Cullen and Jennifer Twachtman-
Bassett
Wrightslaw: From Emotions to Advocacy: The Special Education Survival
Guide by Peter W.D. Wright and Pamela Darr Wright
Explaining Autism to Young Peers, Family, and Friends
Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family
by Jude Welton
My Friend Has Autism by Amanda Doering Tourville and Kristin Sorra
My Friend with Autism by Beverly Bishop
Since We’re Friends: An Autism Picture Book by Celeste Shally and David
Harrington
What Is Autism?: Understanding Life with Autism or Asperger’s by Chantal

Sicile-Kira
Books Specific to Girls and Women on the Spectrum
Asperger’s and Girls by Tony Attwood and Temple Grandin, et al.
Aspergirls: Empowering Females with Asperger Syndrome by Rudy Simone
Girls Growing Up on the Autism Spectrum: What Parents and Professionals
Should Know About the Preteen and Teenage by Shana Nichols
Girls Under the Umbrella of Autism Spectrum Disorders: Practical
Solutions for Addressing Everyday Challenges by Lori Ernsperger and
Danielle Wendel
Parenting Girls on the Autism Spectrum: Overcoming the Challenges and
Celebrating the Gifts by Eileen Riley-Hall
Safety Skills for Asperger Women: How to Save a Perfectly Good Female
Life by Liane Holliday Willey
Puberty/Sexuality
Asperger’s Syndrome and Sexuality: From Adolescence Through Adulthood
by Isabelle Henault
Autism-Asperger’s and Sexuality: Puberty and Beyond by Jerry and Mary
Newport
The Boys’ Guide to Growing Up: Choices and Changes During Puberty by
Terri Couwenhoven, MS
The Girl’s Guide to Growing Up: Choices and Changes in the Tween Years
by Terri Couwenhoven, MS
Intimate Relationships and Sexual Health: A Curriculum for Teaching
Adolescents/Adults with High-Functioning Autism Spectrum Disorders
and Other Social Challenges by Catherine Davies and Melissa Dubie
Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for
Young People with Autism by Mary Wrobel
Health Related
Advice for Parents of Young Autistic Children (2012) by James B. Adams,
PhD, et al.
The Autism Revolution: Whole Body Strategies for Making Life All It Can Be
by Martha Herbert, MD, PhD, with Karen Weintraub

Child—Innovative Strategies for Developing the Right Treatment Plan
by Ricki G. Robinson, MD, MPH
The Autistic Brain: Thinking Across the Spectrum by Temple Grandin and
Richard Panek
Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine
Gottschall
Digestive Wellness: Strengthen the Immune System and Prevent Disease
Through Healthy Digestion by Elizabeth Lipski
Just Take a Bite: Easy, Effective Answers to Food Aversions and Eating
Challenges by Lori Ernsperger and Tania Stegen-Hanson
Ketogenic Diets by Eric H. Kossoff, MD, et al.
The Kid-Friendly ADHD and Autism Cookbook by Pamela Compart, MD, et
al.
Nourishing Meals: Healthy Gluten-Free Recipes for the Whole Family by
Alissa Segersten and Tom Malterre
Nutritional Supplement Use for Autistic Spectrum Disorder by Jon B.
Pangborn, PhD
Special Diets for Special Kids by Lisa Lewis, PhD
“Summary of Dietary, Nutritional, and Medical Treatments for Autism—
Based on Over 150 Published Research Studies” by James B. Adams,
PhD
Treating Autism: Parent Stories of Hope and Success edited by Stephen M.
Edelson, PhD, and Bernard Rimland, PhD
Why Your Child Is Hyperactive by Dr. Ben Feingold
Practical or Educational
Activity Schedules for Children with Autism: Teaching Independent Behavior
by Lynn E. McClannahan and Patricia J. Krantz
Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive,
Social, Physical, and Transition Needs of Teenagers with Autism
Spectrum Disorders by Chantal Sicile-Kira
An Early Start for Your Child with Autism Using Everyday Activities to Help
Kids Connect, Communicate, and Learn by Sally J. Rogers, Geraldine
Dawson, and Laurie A. Vismara
Apps for Autism: An Essential Guide to Over 200 Effective Apps for
Improving Communication, Behavior, Social Skills, and More! by Lois
Jean Brady

Asperger’s from the Inside Out: A Supportive and Practical Guide for
Anyone with Asperger’s Syndrome by Michael John Carley
Asperger Syndrome and Difficult Moments: Practical Solutions for
Tantrums, Rage, and Meltdowns by Brenda Smith Myles and Jack
Southwick
Asperger Syndrome and the Elementary School Experience: Practical
Solutions for Academic and Social Difficulties by Susan Thompson
Moore, MEd
Autism: An Inside-Out Approach by Donna Williams
Autism Life Skills: From Communication and Safety to Self-Esteem and
More—10 Essential Abilities Every Child Needs and Deserves to Learn
by Chantal Sicile-Kira
The Complete Guide to Asperger’s Syndrome by Tony Attwood
Don’t We Already Do Inclusion?: 100 Ways to Improve Inclusive Schools by
Kaula Kluth
and Ronda L. Schelvan
How Your Child Is Smart: A Life-Changing Approach to Learning by Dawna
Markova and Anne Powell
I Am Special: A Workbook to Help Children, Teens, and Adults with Autism
Spectrum Disorders to Understand Their Diagnosis, Gain Confidence,
and Thrive (2nd edition) by Peter Vermeulen
Outsmarting Explosive Behavior: A Visual System of Support and
Intervention for Individuals with Autism Spectrum Disorders by Judy
Endow
Practical Solutions for Stabilizing Students with Classic Autism to Be Ready
to Learn: Getting to Go! by Judy Endow
Seven Keys to Unlock Autism: Making Miracles in the Classroom by Elaine
Hall and Diane Isaacs
“Understanding Autism: A Guide for Secondary School Teachers” (video)
by Organization for Autism Research
You’re Going to Love this Kid!: A Professional Development Package for
Teaching Students with Autism in the Inclusive Classroom by Paula
Kluth
Sensory Processing Related

The Out-of-Sync Child and The Out-of-Sync Child Has Fun by Carol Stock
Kranowitz
Raising a Sensory Smart Child by Lindsey Biel, OTR/L, and Nancy Peske
Reading by the Colors by Helen Irlen
The Sound of a Miracle: The Inspiring True Story of a Mother’s Fight to
Free Her Child from Autism by Annabel Stehli
Visual/Spatial Portals to Thinking, Feeling, and Movement by Serena
Wieder, PhD, and Harry Wachs, OD
A Work in Progress: Behavior Management Strategies and a Curriculum for
Intensive Behavioral Treatment of Autism by Ron Leaf, John McEachin,
and Jaisom D. Harsh
Skills-Based Teaching Approaches
Engaging Autism: Using the Floortime Approach to Help Children Relate,
Communicate, and Think by Stanley I. Greenspan and Serna Wieder
Feelings: Anxiety: Cognitive Behaviour Therapy to Manage Anxiety by Tony
Attwood
Teaching Developmentally Disabled Children: The ME Book by O. Ivar
Lovaas
Understanding Applied Behavior Analysis: An Introduction to ABA for
Parents, Teachers, and Other Professionals by Albert J. Kearney
The Verbal Behavior Approach: How to Teach Children with Autism and
Related Disorders by Mary Barbera, PhD, RN, BCBA-D
Communication/Relationships
An Asperger Dictionary of Everyday Expressions by Ian Stuart-Hamilton
The Autism Social Skills Picture Book by Jed E. Baker
Autistics’ Guide to Dating: A Book by Autistics, for Autistics and Those Who
Love Them or Who Are in Love with Them by Emilia Murry Ramey and
Jody John Ramey
Comic Strip Conversations: Colorful Illustrated Interactions with Students
with Autism and Related Disorders by Carol Gray
Crafting Connections: Contemporary Applied Behavior Analysis for
Enriching the Social Lives of Persons with Autism Spectrum Disorder by
Mitchell Taubman, Ron Leaf, and John McEachin
Developing Communication for Autism Using Rapid Prompting Method:
Guide for Effective Language by Soma Mukhopadhyay

Incorporating Social Goals in the Classroom: A Guide for Teachers and
Parents of Children with High-Functioning Autism and Asperger
Syndrome by Rebecca A. Moyes and Susan J. Moreno
The Incredible 5-Point Scale: Assisting Students in Understanding Social
Interactions and Controlling Their Emotional Responses (2nd edition)
by Kari Dunn Buron and Mitzi Curtis
The New Social Story Book : Over 150 Social Stories That Teach Everyday
Social Skills to Children with Autism or Asperger’s Syndrome and their
Peers by Carol Gray
Social Skills Training for Children and Adolescents with Asperger Syndrome
and Social-Communications Problems by Jed E. Baker
Strategies for Building Successful Relationships with People on the Autism
Spectrum: Let’s Relate! by Brian R. King
Thinking About YOU Thinking About ME by Michelle Garcia Winner
Understanding Autism Through Rapid Prompting Method by Soma
Mukhopadhyay
Transitioning to Adult Life
Paul Wehman, et al.
Life and Love: Positive Strategies for Autistic Adults by Zosia Zaks
Living Independently on the Autism Spectrum: What You Need to Know to
Move into a Place of Your Own, Succeed at Work, Start a Relationship,
Stay Safe, and Enjoy Life as an Adult on the Autism Spectrum by Lynne
Soraya
Self-Advocacy
Ask and Tell: Self-Advocacy and Disclosure for People on the Autism
Spectrum, edited by Stephen Shore
The Integrated Self-Advocacy ISA Curriculum: A Program for Emerging
Self-Advocates with Autism Spectrum and Other Conditions by Valerie
Paradiz, PhD
College

Aquamarine Blue 5: Personal Stories of College Students with Autism,
edited by Dawn Prince-Hughes
Catching the Wave from High School to College: A Guide to Transition,
edited by Carl Fielden, et al.
Realizing the College Dream with Autism or Asperger’s Syndrome: A
Parent’s Guide to Student Success by Ann Palmer
Students with Asperger Syndrome: A Guide for College Personnel by
Lorraine E. Wolf, PhD, et al.
Succeeding in College with Asperger Syndrome: A Student Guide by John
Harpur, Maria Lawlor, and Michael Fitzgerald
Employment
Adult Autism and Employment: A Guide for Vocational Rehabilitation
Professionals by Scott Standifer
Asperger’s on the Job: Must-Have Advice for People with Asperger’s or
High-Functioning Autism and Their Employers, Educators, and
Advocates by Rudy Simone
Asperger Syndrome Employment Workbook: An Employment Workbook for
Adults with Asperger Syndrome by Roger Meyer
Business for Aspies: 42 Best Practices for Using Asperger Syndrome Traits
at Work Successfully by Ashley Stanford
Developing Talents: Careers for Individuals with Asperger Syndrome and
High-Functioning Autism by Temple Grandin and Kate Duffy
The Hidden Curriculum of Getting and Keeping a Job: Navigating the
Social Landscape of Employment—A Guide for Individuals with Autism
Spectrum and Other Social-Cognitive Challenges by Judy Endow,
MSW, Malcolm Mayfield, and Brenda Smith Myles
For Partners of Those on the Spectrum
An Asperger Marriage by Gisela and Christopher Slater-Walker
The Other Half of Asperger Syndrome: A Guide to Living in an Intimate
Relationship with a Partner Who Has Asperger Syndrome by Maxine C.
Aston
22 Things a Woman Must Know If She Loves a Man with Asperger’s
Syndrome by Rudy Simone
22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know
by Rudy Simone

Other Media
Autism Media Channel
autismmediachannel.com
Autism One Radio
autismone.org/content/autismone-radio
Movies
Autism Is a World (written by Sue Rubin)
Autism the Musical
Temple Grandin
The United States of Autism
Wretches and Jabberers (about Larry Bissonette and Tracy Thresher)
Online Networks
Autism Brainstorm: autismbrainstorm.org
Interactive Autism Network: ianproject.org
Magazines/Newspapers
Age of Autism: ageofautism.com
Autism Asperger’s Digest: autismdigest.com
The Autism File: autismmediachannel.com
Autism Spectrum Quarterly: asquarterly.com
Autism World Magazine: autismoz.com
Schafer Autism Report: www.sarnet.org
Other Online Resources
Adolescents on the Autism Spectrum
autismcollege.com
AGI Residential/Daily Living Support Course
houltoninstitute.com/programs/agi-residential-daily-living-support-course

The Autism Calendar
sarnet.org/events

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Index
The page numbers in this index refer to the printed version of this book. To find the corresponding locations
in the text of this digital version, please use the “search” function on your e-reader. Note that not all terms
may be searchable.
Aarons, Maureen, 126
“ABCs of Child Development, The” (PBS), 192
ABCs of Special Needs Planning Made Easy, The (Stevens), 176–78
abuse, preventing, 266–69
Abuse of Children and Adults with Developmental Disabilities (Baladerian), 268
Ackerman, Lisa, 107
Act Early (CDC), 24
activity leaders, preparing, 256, 257–58
Adams, James B., 60, 99, 106, 107, 108
Administration of Intellectual and Developmental Disabilities (AIDD), 194, 198, 205, 214, 297, 329
adolescent issues, 152–63, 234
Adolescents on the Autism Spectrum (Sicile-Kira, C.), 152, 234, 245
Adreon, Diane, 228
Adult Autism and Employment (Standifer), 299, 304
adulthood, 291–92
adults
diagnosed with ASD, 76, 78, 170–72
living and working with ASD, 287–320
See also college; employment and careers; parents Advancing Futures for Adults with Autism (AFAA),
295–96
“Advice for Parents of Young Autistic Children” (Adams, Edelson, Grandin, Rimland, and Johnson), 60,
99, 108
advocates, 195, 196–202, 215–17
Affleck, Merryn, 197
age of onset, dramatic shift in, 13
aggression, meaning, 55–56
agricultural community programs, 311
air pollution factor, 44
Alliance for Technology Access (ATA), 130
alternative and augmentative (AAC) forms of communication, 120, 130
Alternative Living Arrangements, 312
American Bar Association, 214
American Music Therapy Association, 129
American Occupational Therapy Association, 129

American Psychiatric Association (APA), 29
Americans with Disabilities Act (ADA), 230, 252, 289, 306, 307–8
analysis skills, new diagnosis, 64–66, 80
Anderson, Winifred, 191, 192, 193
antipsychotic medications, 127, 128
anxiety disorders, 31
applied behavior analysis (ABA), 49, 63, 84, 90, 113–17, 118, 119, 235, 237–38
Apps for Autism (Brady), 130
artificial colorings, flavors, 101, 102
ASD. See autism spectrum disorder
Asia and ASD, 13
asking questions, 61, 83, 97–98, 199, 201, 207
Asperger, Hans, 8–9, 180
Asperger Dictionary of Everyday Expressions (Stuart-Hamilton), 231
Asperger Marriage, An (Slater-Walker and Slater-Walker), 320
Asperger partner, marriage with, 170–75
Asperger’s, xxi, 3, 7, 9, 15, 22, 25, 29, 33, 36, 59, 76, 79, 156, 170, 289, 290, 295
Asperger’s and Girls (Attwood and Grandin), 164
Asperger’s Association of New England, 313
Asperger’s from the Inside Out (Carley), 6, 33
Asperger’s on the Job (Simone), 304
Asperger Syndrome and Adolescence (Myles and Adreon), 228
Asperger Syndrome and the Elementary School Experience (Moore), 228
Asperger Syndrome Employment Workbook (Meyer), 298, 305
Asperger Syndrome in the Family (Willey), 320
Asperger Syndrome Partners and Individuals, Resources, Encouragement, and Support (ASPIRES), 172
Asperger Syndrome Training and Employment Partnership (ASTEP), 33, 302, 305
Aspergirls (Simone), 164
assessment reports, IEP, 205, 206
Assistive Chat, 120
assistive technology, 130
Aston, Maxine C., 318, 320
Atlanta and ASD, 12
Atlantic, 14
attorneys, knowledgeable about, 215–16
Attwood, Tony, 78, 161, 162–64
auditory integration training (AIT), 110–11, 315
auditory processing, 93, 194, 236, 237, 284–85, 308, 315
auditory stimulation avoidance, 53–54
Autism: An Inside-Out Approach (Williams), 89, 94, 232, 281
Autism: A Social Skills Approach (Aarons and Gittens), 126
Autism and Developmental Disabilities Monitoring (ADDM) Network, CDC, 12
Autism and the Transition to Adulthood (Wehman, Smith, and Schall), 245, 305
Autism-Asperger’s and Sexuality (Newport and Newport), 144, 156, 159, 163, 166, 317
Autism Asperger’s Digest, 246
“autism”/”austistic,” 8
Autism Centers of Excellence (ACE), 37
Autism College, 142, 151, 152, 309
Autism Life Skills (Sicile-Kira, C.), 172, 227, 231, 245, 305
Autism National Committee (AutCom), 17, 213, 325

Autism Network for Dietary Intervention, 103
Autism Network International, 77–78
Autism Northern Territory Inc., 197
Autism One, 17, 326
Autism Research Institute (ARI), xx, 11, 13, 17, 41, 60, 99, 102, 107, 108, 110, 326
Autism Revolution, The (Herbert and Weintraub), 62, 99
“autisms,” 40
Autism Social Skills Picture Book, The (Baker), 126
Autism Society Canada, 38
Autism Society of America (ASA), xix, 7, 10–11, 17, 59, 107, 147, 152, 197, 276, 293, 326
Autism Society of Wisconsin, 213
Autism Solutions (Robinson), 62, 327
Autism Speaks, 17, 40, 59, 63, 88, 99, 107, 240, 276, 327
autism spectrum disorder (ASD), xiii–xxii, 321–24
See also parents; specific organizations and publications
Autism Women’s Network (AWN), 60, 326
Autistic Brain, The (Grandin and Panek), 43, 127
Autistic Global Initiative (AGI), 17, 213, 326
autistic savant (Rain Man) myth, 2–3
Autistic Self-Advocacy Network (ASAN), 60, 327
Autistry Studios, 254–55
autos (“self”), 8
Ayres, Jane, 108
Baby Builders, 192
babysitters, 259–74
back-to-school tips, 225–27
Baker, Bruce, 150, 151
Baker, Jed E., 126
Baker, Sidney MacDonald, 103, 104
Baladerian, Nora J., 152, 264, 266–69
Barbera, Mary Lynch, 114–16, 117
Baron-Cohen, Simon, 126
Bateman, Barbara D., 202
BBC, 131
Beethoven, Ludwig van, 3, 7
behavioral characteristics of ASD, 15, 24–27, 50–56, 93, 274–75, 277
Behavior Analyst Certification Board, 117
Behavior of Organisms, The (Skinner), 113
behavior plans, 151, 238
Berard, Guy, 110
Bettelheim, Bruno, 9–10
Better IEPs (Bateman and Linden), 202
Beyond Brochures (Autism College), 309
Beyond the Silence (Mukhopadhyay, T.), 131
Beyond the Wall (Shore), 281, 286, 313
Biel, Lindsey, 110
Billingsley, Bonnie S., 186
Bishop, Beverly, 224, 258

Bleuler, Eugen, 8
blind men and the elephant (parable), 14
“blind tests,” 123
Bloomberg School of Public Health, 48
Blume, Harvey, 14
body boundary issues, 285–86
body movements (unusual), meaning, 54–55
Bondy, Andy, 124
Boscardin, Mary Lynn, 186
Boston Marathon bombing, 66
boys and ASD, xxi, 21, 153, 163, 166, 234
Boys’ Guide to Growing Up, The (Couwenhoven), 155
Brady, Lois Jean, 130
brain-gut connection, 13–14, 16, 99, 100
Breaking Autism’s Barriers (Davis), 174
Breaking the Vicious Cycle (Gottschall), 104
Brightman, Alan, 150, 151
British Picture Vocabulary Scale, 131
Building the Legacy IDEA 2004, 215
bullying, 161–62, 228–31, 319
business of autism caution, 59, 65, 95
buyer beware (information), 64–66
Byrd, Robert S., 36
California Department of Developmental Disabilities, 35–36
California Department of Developmental Services, 12, 13, 36, 37
“Call to Action, A” (Sullivan), 293
Canada and ASD, 38–39
careers. See employment and careers Carley, Michael J., 6, 11, 32–33, 152, 318
Carousel School in Los Angeles, 85
“Catching the Wave from High School to College” (Fielden), 306–7, 309
causes of ASD, 21, 27, 34–50
Cave, Stephanie, 50
Center for Autism and Related Disorders, Kennedy Krieger Institute, 173
Center for the Special Education Finance, 185
Center for the Study of Autism (CSA), 127
Center on Personnel Studies in Special Education (COPSSE), 185–86
Centers for Disease Control and Prevention (CDC), 12, 24, 37
centers for independent living (CILs), 312
cerebral palsy, 37
Challenger explosion, 66
“Changes in the Population of Persons with Autism and Pervasive Developmental Disorders in California’s
Developmental Services System,” 36
chantalsicile-kira.com, xxii
characteristics of ASD, 15, 24–27, 50–56, 93, 274–75, 277
Chassman, Marilyn, 150–51
child, loss of, 68, 69
Childhood Autism Risks from Genetics and Environment (CHARGE), 44
childhood disintegrative disorder, 29

Chitwood, Stephen, 191, 192, 193
chores, 151
“circle of friends,” 158–59, 239
classroom volunteers, 208–9
clothes/shoes removal, meaning, 54
Coalition for Autism Research and Education (CARE), 38
cognitive behavior therapy, 161
college, 240–41, 243–46, 305–12
See also adults, living and working with ASD; employment and careers Combating Autism
Reauthorization Act, Public Law 112-32, 38
Comic Strip Conversations (Gray), 125
communication, 24, 51–52, 80, 81, 119–24, 141–42
community colleges, 305, 306
community life, xix, 247–86, 319
comorbidity, 31
Compart, Pamela, 104
competitive employment, 300
Complete Guide to Asperger’s Syndrome, The (Attwood), 78
compliance complaint (filing), IEP, 209
Congressional Autism Caucus, 38
connecting with child, new diagnosis, 64, 69
conservatorships, 177
Council of Parent Attorneys and Advocates (COPAA), 214, 216
couples’ counseling, 175
Couwenhoven, Terri, 155
Crafting Connections (Taubman, Leaf, and McEachin), 117
Creation of Dr. B, The (Pollack), 9–10
Crossley, Rosemary, 123
Cruise, Tom, 2
cultural points of reference, 136–37
Cure Autism Now (CAN), 16–17, 99, 131
curing autism (myth), 4–5, 7
customized employment, 300–302
Danya International Inc., 245, 297
dating skills, 162–63, 166
Davies, Catherine, 156
Davis, Bill, 174
Dawson, Geraldine, 62, 150
Death and Dying, On (Kübler-Ross), 67–68
Defeat Autism Now! (DAN!), 11, 84, 103
Del Mar Union School District, CA, 187
de novo CNVs (copy number variants), 43
depression, 31, 68, 72, 160–61, 319
desensitizing, 151
Developing Talents (Grandin and Duffy), 298
developmental disability, 9
developmental individual differences relationship-based intervention (DIR/Floortime), 117–19
developmental milestones, 24, 28, 192–93

diagnosing ASD, 4, 12–13, 18–33
See also new diagnosis of ASD
Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), 15, 29–30
Diagnostic and Statistical Manual of Mental Disorders (DSM-V), 15, 25, 29–31, 170
diagnostic criteria, 20, 24, 27–29, 30–31, 36
dietary approaches, 11, 44, 100–106
Dietary Supplement Verification Program (DSVP), USP, 105
Disability and Abuse Project in Los Angeles, 152, 269
Disability and Policy Studies, 299
Disability Benefits 101, 305
Disability Rights California, 205
disability vs. handicap, 291
Disabled Student Support Services at colleges, 306
discrete trial teaching (DTT), ABA, 116
diversity issue, autism as, 296
doctor, getting attention of, 23
doing your best, employment, 303
“Don’t Mourn for Us” (Sinclair), 67, 68, 77–78
“double-blind” tests, 123
Do-Watch-Listen-Say (Quill), 126
dressing, 159
Dubie, Melissa, 156
due process hearing, IEP, 181, 188, 201, 204, 208, 209, 213, 215, 216, 217
Duffy, Kate, 245, 298
Duncan, Arne, 230
early intervention, 19, 20, 28, 38, 43, 49–50, 60, 63, 70, 83, 84, 92, 96, 127–28, 182, 183, 188, 194–96, 236,
322
early-onset ASD, 13, 21–22
Early Start for Your Child with Autism Using Everyday Activities to Help Kids Connect, Communicate, and
Learn, An (Rogers, Dawson, and Vismara), 62, 150
eating healthy, 101–2
echolalic children, 236–37
Edelson, Stephen M., 11, 60, 99, 108
Educating Children with Autism (Lord and McGee), 188
education, 180–246
“Education and Jobworthiness” (Newport, M.), 246
Einstein, Albert, 3, 7
electroencephalogram (EEG), 28
Elliot House (NAS), 131
Emergence: Labeled Autistic (Grandin and Scariano), 5, 6
emergency responders, 275–76
Emmy Award, 298–99
emotions and attachments, none (myth), 6
employment and careers, 295–96, 298–305
See also adults, living and working with ASD; college empowering yourself, new diagnosis, 59–66, 83,
86–88
Endow, Judy, 11, 210–13, 318
Engaging Autism: Using the Floortime Approach . . . (Greenspan and Wieder), 119

environmental factors, 16, 42, 44, 52
epidemic of ASD, 2, 12–13, 35–39, 58, 182, 217, 293
epilepsy, 37, 42, 105
erections and ejaculation, 153
Ernsperger, Lori, 164
errorless learning (no-mistake learning), ABA, 116–17
essential fatty acids (EFAs), 105–6
Europe and ASD, 13
“Every Child with Autism Must Become a Success” (Newport), 7
Everyday Advocate, The (Martin), 191
Exceptional Family Resource Center (EFRC), 204
Exploring Feelings (Attwood), 161
expressive language, 115
extended family members, 135
eye contact (lack of), meaning, 54
facilitated communication training (FCT), 120–21, 122–23
Fairview State Hospital, xviii, 2–3
faith, 146–47
Families of Adults Affected by Asperger’s Syndrome (FAAAS), 172
F.A.M.I.L.Y. Autism Guide (Zibricky), 179
family factors, treatments, 94–95
family life, 20–21, 133–79
farmstead programs, 311
Feder, Joshua, 118
Feingold Diet, 102
females vs. males, xxi, 21, 153–54, 163–64, 166, 234
Fielden, Carl, 306–7, 309
Financial Help for Disabled Students, 309
financial support, 83, 95
finding your way around, 233, 313–14
finicky eating, meaning, 52–53
First Signs, 327
First Then Visual Schedule (app), 239
Fitzgerald, Michael, 309
flexibility challenges, 233–34
fluorescent lighting, 277–79, 282–83, 284
food sensitivity, 52–53, 100, 316
Fournier, Wendy, 46–48
France and ASD, 9
Freaks, Geeks, and Asperger Syndrome (Jackson), 159, 218, 227–28, 231, 257
FRED Conference, 312, 328–29
“free and appropriate education” (FAPE), 183, 184, 185, 198, 201–2, 222
Freedman, Brian, 173
freelancers, 301
Freeman, John M., 105
friendships. See social relationships Frost, Lori, 124
full inclusion placement, 206, 207–8, 210–13
Full Life with Autism, A (Sicile-Kira and Sicile-Kira), xix–xx, 180, 241, 245, 247, 280, 288, 298, 302, 304,

308
Functional Behavioral Assessment, 238
functional MRI (fMRI) advances, 42
funding, 62–63, 86–88, 182, 183, 184–85, 187, 188, 289
future care planning, 176–79
future of ASD, 16–17
Garcia, Michelle, 239
gastrointestinal tract, 13–14, 16, 42, 99, 100
genetics, 16, 28–29, 42, 43, 44
genius, everyone with ASD (myth), 3
Gerhardt, Peter, 291–92
getting over what other people think, 138
girls and ASD, xxi, 21, 153–54, 163–64, 234
Girls Growing Up on the Autism Spectrum (Nichols), 164
Girls’ Guide to Growing Up, The (Couwenhoven), 155
Girls Under the Umbrella of Autism Spectrum Disorders (Ernsperger and Wendel), 164
Gittens, Tessa, 126
Global and Regional Asperger Syndrome Partnership (GRASP), 17, 33, 60, 318, 327
Gluten-Free/Casein-Free (GFCF) Diet, 11, 102–4, 128
Goddard, Peyton, 12
Going to College, 309
Goldblatt, Ellen S., 205–9
Gottschall, Elaine, 104
Gould, Judith, 131
government’s response to epidemic of ASD, 37–38, 293–94, 296
Grandin, Temple, xiii–xv, 5, 6, 7, 11, 43, 60, 99, 108, 127–28, 132, 164, 171, 232, 236–37, 240, 245, 277,
280, 282–85, 298–99, 301, 315
grandparents, 169–70
Grandparent’s Guide to Autism Spectrum Disorders (Mucklow), 170
Gray, Carol, 124, 125
Greenspan, Stanley, I., 117, 119
grief cycle, 67–76, 77–78, 134–35
grooming, 159
group homes, 294, 295, 310–11
Gruger, Joyce, 85
guardianships, 177
Haddad, Cynthia, 178
handicap vs. disability, 291
Hanson, Darlene, 122–23
Harpur, John, 309
Harsh, Jaisom D., 117
Hayden, Deidre, 191, 192, 193
Health and Light (Ott), 277
healthy bodies, 99–100
helpers, 153, 252, 256, 257, 258
Helping Autism Through Learning and Outreach (HALO), 85, 86, 132
Herbert, Martha, 62, 99

hidden curriculum, 126, 172, 212
Hidden Curriculum, The (Myles, Trautman, and Schelvan), 126, 230–31
high-definition fiber tracking (HDFT), 42
high school vs. college, 306–7
Hillier, Carl, 111
hiring in-home providers, 261–70
hiring someone with ASD, 303–5
history of ASD, 8–16, 33
HIV/AIDS, 155
Hoffman, Dustin, 2
honesty of autistic people, 303, 304
“hopeism,” 47
Horizon Program at Capitol School of Austin, 85
housing and support, college, 309–12
Howlin, Patricia, 126
how to get the educational provision your child needs, 180–246
how to know what will help, treatments, 91–96
How Your Child Is Smart (Markova and Powell), 191
hygiene, 152–55, 159
hyperactivity, 55–56, 102
hyperbaric oxygen therapy (HBOT), 106
I Am Special (Vermeulen), 240
Iceland and ASD, 13
ID tag for child, 148–49
IEP from A to Z, The (Twachtman-Cullen and Twachtman-Bassett), 191, 202
imaginative thought impairment, 25
imitation skills, lacking, 218–19
improvements (none) for ASD (myth), 5–6
inclusion, 206, 207–8, 210–13, 224
Inclusion Press, 241
Incorporating Social Goals in the Classroom (Moyes and Moreno), 126
increased integration, 206
Indiana Resource Center for Autism Disorder, 309
individual challenges, adults, 289–90
individual estate managers, 177
individualized education program (IEP), 82, 162, 163, 202–17
individualized transition plan (ITP), 244
Individuals with Disabilities Education Act (IDEA), 183–84, 186, 188, 194, 198, 215, 241, 243, 306
Infantile Autism (Rimland), 10
information and instructional directives, 177
in-home providers, 261–74, 294
“input” and ASD, 4
Inside Story: Tito’s Story (BBC), 131
Institute for Vaccine Safety, 48
Institute of Medicine (IOM), 38, 41
insurance coverage, 63, 83, 88
Integrated Self-Advocacy ISA Curriculum, The (Paradiz), 245
integration, 220–23

Interagency Autism Coordinating Committee (IACC), 38
Interdisciplinary Council on Developmental and Learning Disorders (ICDL), 99, 118, 119
interests of child, community life, 249, 253, 255–56
interests of child, education, 224, 236, 240
Intermediate Care Facility for individuals with Mental Retardation (ICF-MR), 311
International Conference on Autism in Toronto (1993), 77
Internet, 16, 318
interventions, 5, 89–132, 277
interviewing in-home providers, 263–68, 269–70
Intimate Relationships and Sexual Health (Davies and Dubie), 156
intimidation by professionals, 61, 201
“invisible” disability, 219, 227
See also autism spectrum disorder (ASD) iPads, 120, 130, 142, 147–48, 233, 239
iPhones, 120, 130, 142, 233, 239
Irlen, Helen (Irlen lenses), 112, 127, 283
isolation, avoiding, 134, 137–38
Is This Your Child’s World? (Rapp), 277, 281
Iverson, Portia, 16
Jackson, Luke, 159, 162, 218, 227–28, 229, 231, 257
Japan and ASD, 13
jargon, learning the, 61, 201, 207
Jefferson, Thomas, 3
Jeremy’s Vision, xx
job carving, 300
job coaches, 294
Jobs 4 Autism, 305
Johnson, Jane, 60, 99, 108
Journal of the American Medical Association, 12
Kanner, Leo, 8–9
Kearney, Albert J., 238
Kedar, Ido, 12
Keller, Helen, 180, 322
Kennedy, John F., 66
Kennedy Krieger Institute in Baltimore, 173
Ketogenic Diet, 11, 104–5
Ketogenic Diets (Kossoff, Freeman, Turner, and Rubenstein), 105
Kid-Friendly ADHD and Autism Cookbook, The (Compart, Laake, Pangborn, and Baker), 104
kinesthetic learners, 93
King, Brian, 11, 318
Kingsley, Emily Perl, 321–22
Kluth, Paula, 224
knowing person, treatments, 91–99
knowing someone with ASD tips, 318–20
knowledge, new diagnosis, 59–66, 83, 86–88
Kossoff, Eric H., 105
Kranowitz, Carol Stock, 110, 280
Kübler-Ross, Elisabeth, 67–68

Laake, Dana, 104
labels, 15–16, 20–21, 223
Labrador and ASD, 38
lab tests, 96
Lancet, 13
Lange-Wattonville, Linda, 84–86
Lanterman Developmental Disabilities Act, 35–36
Lashley, Carl, 186
late-onset (regressive) ASD, 13, 22, 45, 68
law, knowledgeable about, 214–15
Lawlor, Maria, 309
Lawson, Janet, 254–55
Laying Community Foundations for Your Child with a Disability (Stengle), 287
LD online, 24
lead level test, 29
Leaf, Ron, 117
“leaky gut,” 100
Learning Research and Development Center, 42
learning style of child, 93, 127–28, 193–94
legal documents, preparing, 177–78
LeGare, Ellen, 203–4
Legoland in Berkshire, England, 90
leisure activities, 316–17
Leon, Sharon and Juan, 49–50
Let Me Hear Your Voice (Maurice), 90, 153
Lewis, Lisa, 103
licensure of administrators, 186, 188
Lichtenberg, Georg Christoph, 321
Lieberman, Lisa Ackerson, 274
Life and Love (Zaks), 6
Life Institute, 90
Life Journey Through Autism (Danya International Inc. and OAR), 245, 297
life plan, preparing, 176, 178
life skills, learning, 212, 224, 227, 241
Linden, Mary Anne, 202
lining up objects (sameness), meaning, 55
Listening Program, 111
lobbying force, 16
local school district, learning about, 198
local support groups, 60, 62–63, 83, 86, 87, 175
Look Me in the Eye (Robison), 6
Lord, Catherine, 188
Lovaas, O. Ivar (Lovaas program), 84, 90, 114, 116, 117, 235
magnetic resonance imaging (MRI), 28, 42
“male brain,” 165
males vs. females, xxi, 21, 153–54, 163–64, 166, 234
Markle, Marsha, 140–41
Markova, Dawna, 191

marriage with Asperger partner, 170–75
marshaling your resources, 78–83, 86–88
Martian in the Playground (Sainsbury), 180, 247, 257
Martin, Areva, 191
masturbation, 157
Maurice, Catherine, 90, 153
McEachin, John, 117
McGee, James P., 188
M-CHAT, 28
mediation, IEP, 181, 204, 213, 216
Medicaid, 87, 178, 294, 297
Medical Academy of Pediatric Special Needs (MAPS), 107
Medical Investigation of Neurodevelopmental Disorders (MIND), UCSD, 17, 36, 44
medical science advances, 16, 17
medical tests, 27–28
medications, 108, 128
“meltdowns,” 7–8, 55–56
menstrual cycle, 153–54
mental illness, 9
mental retardation, 37
Mentink, Dale, 205–9
mentors, 299, 301, 308
Merzenich, Michael, 131–32
metabolic screening, 29
Meyer, Donald J., 169
Meyer, Roger N., 298, 305
Milano, Gwen and Frank, 85
mind-blindness, 229
Mind Tree, The (Mukhopadhyay), 1, 4, 6, 34
mitochondrial disease, 44
MMR (measles, mumps, rubella) vaccine, 13–14, 41
modesty, private vs. public, 156–57
monitoring child’s progress, 202, 209, 213
Moore, Susan Thompson, 228
Moreno, Susan J., 126
Moyes, Rebecca A., 126
Mucklow, Nancy, 170
Mukhopadhyay, Soma, 85, 121, 131–32
Mukhopadhyay, Tito Rajarshi, 1, 4, 6, 12, 34, 131–32
music therapy, 129
My Friend with Autism (Bishop), 224, 258
Myles, Brenda Smith, 126, 228, 230–31
myths about ASD, 2–8, 275
Nadworny, John, 178
Naseef, Robert A., 57, 133
National Academies Press, 188
National Academy of Sciences, 38
National Alliance for Autism Research (NAAR), 17

National Association for Child Development, 84
National Associations of Councils on Developmental Disabilities, 87
National Autism Association (NAA), 17, 46–48, 59, 240, 276, 327–28
National Autistic Society (NAS), 13, 39, 131
National Conference on Autism (2001), 7
National Council on Independent Living (NCIL), 312, 329
National Crime Victim Services Award, 269
National Epidemiologic Database for the Study of Autism in Canada (NEDSAC), 38
National Foundation for Autism Research (NFAR), 49–50
National Institutes of Health (NIH), 37, 192, 194, 232
National Library of Medicine Pubmed, 40
National Research Council, 188
National Vaccine Information Center (NVIC), 48
needs of child and community life, 249, 253, 255–56, 257–58
Negotiating the Special Education Maze (Anderson, Chitwood, and Hayden), 191, 193
neuroanatomical findings, 43
neurodevelopmental disability, 21
neurodiversity, 5, 14–15, 40
neuroimaging advances, 42, 43
Neurologic Music Therapy (NMT), 129–30
neuroplasticity of brain, 19, 92
neuroscience research, 42–43
neurotypicals, xx, 3, 4–5, 6, 7, 189, 211, 251, 290, 318
new diagnosis of ASD, 21, 57–88
See also diagnosing ASD
Newfoundland and ASD, 38
Newport, Jerry and Mary, 6, 7, 11, 144, 152, 156, 159, 163, 166, 229, 246, 287, 298, 299, 303, 317, 318
New Social Story Book, The (Gray), 125
Newton, Isaac, 3
Nichols, Shana, 164
Ninth Symphony (Beethoven), 7
Nobody Nowhere and Somebody Somewhere (Williams), 6, 18, 57
No Child Left Behind Act (NCLB), 184, 198
“no” communicating, 157–58
nonprofit organizations, 16–17, 59–60
See also specific organizations
nonverbal and unintelligent (myth), 3–4
North County Chapter of the Autism Society of America in San Diego, 197
Nourishing Meals (Segersten and Malterre), 104
nutritional approaches, 11, 44, 100–106
Nutritional Supplement Use for Autistic Spectrum Disorder (Pangborn), 107
obesity (mother’s) factor, 44
observing and recording your child’s abilities, 190, 192–94
obsessions of child, using, 224, 236, 240
occupational therapy, 129
Office for Victims of Crime (OVC), 269
Office of Civil Rights (OCR), 162, 230
olfactory sensitivity, 316

omega-3/omega-6, 106
“once autistic, always autistic” (myth), 5
One on One (Chassman), 150–51
one step at a time, new diagnosis, 61
“Opening Doors” (Urban Land Institute Arizona), 310
Orange County Regional Center for the Developmentally Disabled, xviii Organization for Autism Research
(OAR), 17, 228, 245, 297, 328
Original Social Story Book, The (Gray), 125
Other Half of Asperger Syndrome, The (Aston), 320
Ott, John, 277
Our Voice (Autism Network International), 77–78
Out-of-Sync Child, The (Kranowitz), 110, 280
“output” and ASD, 3
“outside the box” thinking, 17, 83
Outstanding Literary Award (ASA), xix
Pacific Coast Advocates in San Diego County, 141
Palmer, Ann, 308
Panek, Richard, 43, 127
Pangborn, Jon B., 103, 104, 107
Paradiz, Valerie, 11, 245
paraprofessionals, 186, 188–89, 220, 221, 222, 223
“Paraprofessionals” (Wallace), 186
Parenting Girls on the Autism Spectrum (Riley-Hall), 164
parents
diagnosing ASD, 46–47, 49–50
handling your own emotions, 66–76
information from caution, 64–65
power of, 32–33, 131–32, 319, 322–23
See also adults; autism spectrum disorder (ASD); new diagnosis of ASD
Partington, James W., 114
partners of adults with ASD, 170–75, 319–20
PBS, 192
PDD Not Otherwise Specified (PDD-NOS), 15, 29, 30
peers, informing, 219, 223–24
peer tutors, 224
Perner, Lars, 305–6, 309
personal experiences about ASD, 11–12
See also specific publications
person-centered planning, 241, 292, 294
personnel, special education, 181, 182, 183, 185–86, 188, 199–200
pervasive developmental disorder (PDD), 15, 30
Peske, Nancy, 110
pesticides factor, 44
Picture Exchange Communication System (PECS), 120, 121, 123–24, 141–42, 235, 237, 239
Pike, Jo, 47
plane travel, 149–50
playing with others (lack of), meaning, 55
police, 276

politics of education, 217, 242–43
Pollack, Richard, 9–10
Powell, Anne, 191
precise, being, 218
preservatives, 101, 102
presumption of competence, 218–19
presumption of employability, 295–96
Pretending to Be Normal (Willey), 6, 22, 79, 280, 315
Price Edward Island and ASD, 38
private vs. public acts, 156–57
“Problems with Finding Your Way Around, For,” 233
Profectum, 99, 119, 328
professionals (information) caution, 65–66
Proloquo2Go, 120, 142
“protection and advocacy” state agencies, 194, 198, 205, 206
PTSD, 8, 56, 319
puberty, 152–55, 160–61
public, ASD knowledge, 274–86
Pulde, Dana, 225–27
Pyramid Educational Consultants, 124
Quill, Kathleen Ann, 126
Race for Autism (NFAR), 50
Rain Man (movie), 2–3, 11, 34
Raising a Sensory Smart Child (Biel and Peske), 110
Rapid Prompting Method (RPM), 85, 121, 132
Rapp, Doris J., 277, 281
Rasmussen, Tracy, 114, 116, 117
Reading by the Colors (Irlen), 112
reality of life with ASD, 288–98
Realizing the College Dream with Autism or Asperger’s Syndrome (Palmer), 308
realworkstories.org, 302, 305
receptive language, 115
record keeping, 63, 200–201, 204
recreational activities, 250, 251–53, 255–59, 316–17
Reeve, Christopher, 47
“refrigerator mother,” 9–10
Rehabilitation Act of 1973, 230
relationships
special education, 200, 202, 204, 225–26
See also community life; social relationships religion, 146–47
resources, 325–29
See also specific organizations and publications
respite providers, 259–74
rights, finding your, 87, 88
Riley-Hall, Eileen, 164
Rimland, Bernard, 10–11, 60, 99, 103, 107, 108
“Risk Reduction Workbooks, The” (Baladerian), 152

Risperdol, 127, 128
Ritalin, 277
Robinson, Ricki G., 62, 99
Robison, John Elder, 6, 11
Rogers, Sally J., 62, 150
Rubenstein, James E., 105
Rubin, Sue, 12
Rzucidlo, Susan F., 322
Safe Minds, 48, 329
safety, 151–52, 232–33, 240, 251, 268, 275, 276
“Safety in the Home” (ASA), 152
Safety Skills for Asperger Women (Willey), 164
Sainsbury, Clare, 180, 247, 257
salicylates, 102
Samonas Auditory Intervention, 111
San Diego Book Award., xix
Sandy Hook Elementary School, 66
Saperstein, Jesse A., 11, 152, 229
Saverese, D. J., 12
Scariano, Margaret M., 5, 6
Schall, Carol, 245, 305
schedules, 143, 147, 148, 239
Schelvan, Ronda L., 126, 230–31
schizophrenia, 8
school administrators, 186, 188, 242–43
Science, 43
Scientific Council for the Organization for Autism Research, 292
Sears, Robert W., 48
seeking employment, 299–303
seizures, 28, 84, 96, 104, 108, 154
self-advocacy skills for college, 307, 310
self-care importance, 64, 71, 139, 140–41
self-determination, 292
self-employment, 295, 301–2
self-esteem, 7, 240
sensory integration (SI), 109–10
sensory processing, 108–12, 231–32, 236, 237, 275, 276–86, 315–16
Sensory Smarts, 110
September 11 terrorist attacks, 66
services
adult services, state of, 293–98
diagnosing ASD, 19, 20, 62–63, 86–88
in-home providers, 261–74
sexuality, 155–59
shadow aids, community life, 252, 256, 257, 258
sharing, teaching your child, 144
Sharing Information About Your Child with Autism Spectrum Disorder (Vicker), 274
Shattuck, Paul T., 244–45

sheltered employment, 300
Shestack, Jon, 16
Shore, Stephen, 11, 206, 224, 245, 277, 281, 286, 305–6, 313, 318
siblings, 134, 135, 165–69
Sibshops (Meyer and Vadasy), 169
Sicile-Kira, Chantal, xvii–xxii, xix–xx, 62, 144, 152, 172, 180, 227, 231, 234, 241, 245, 247, 275, 280, 288,
298, 302, 304, 305, 308
Sicile-Kira, Jeremy, xvii–xviii, xix–xx, 12, 35, 58, 90, 146, 167, 180, 181, 241, 245, 247–48, 259, 260, 280,
288, 298, 302, 304, 308, 321, 322
Sicile-Kira, Rebecca, 167
Simone, Rudy, 164, 172, 229, 304, 320
Sinclair, Jim, 67, 68, 77–78
Singer, Judy, 14
60 Minutes (TV show), 85
skills-based teaching, 112–13, 116–19
Skinner, B. F., 113, 114–15, 116
Slater-Walker, Gisela and Christopher, 318, 320
Smith, Marcia Datlow, 245, 305
Snider, Patricia H., 187
social gatherings, 144–45
social relationships
adults, 316–18
boundaries, 158–59
challenges, 15, 25, 232, 312–13
training, 124–26, 151, 161, 162–63, 235, 239, 295, 296, 301
See also community life; relationships Social Security Administration (SSA), 88, 244, 297, 329
Social Skills Training for Children and Adolescents with Asperger Syndrome and Social-Communications
Problems (Baker), 126
social stories method, 124–25, 233, 239
Sonia Shankman Orthogenic School in Chicago, 9, 10
Soraya, Lynne, 11
Sound of a Miracle, The (Stehli), 111
Southeastern Ontario and ASD, 38
“special assistance coordinators,” 149
Special Children, Challenged Parents (Naseef), 57, 133
Special Diets for Special Kids (Lewis), 103
special education, 181–202
“Special Education Administration at a Crossroads” (Lashley and Boscardin), 186
“Special Education Teacher Retention and Attrition” (Billingsley), 186
Specialisterne (The Specialists), 302
Special Needs Network (SNN), 17
Special Needs Planning Guide, The (Nadworny and Haddad), 178
“special needs trust,” 178
Specific Carbohydrate Diet (SCD), 104
speech and communication, 24, 119–24
spirituality, 146–47
“Standards of Best Practice for Facilitated Communication” (Hanson), 123
Standifer, Scott, 299, 304
State Council on Developmental Disabilities, 87, 297
Statewide Independent Living Council (SILC), 297

“stay-put,” 208
Stehli, Annabel, 111
Stengle, Linda J., 287
Steps to Independence (Baker and Brightman), 150, 151
Stevens, Bart, 176–78
Stranger Among Us, A (Lieberman), 274
Stuart-Hamilton, Ian, 231
students, challenges, 228–34
See also education
Students with Asperger Syndrome (Wolf), 308
Study to Explore Early Development (SEED), CDC, 37
Succeeding in College with Asperger Syndrome (Harpur, Lawlor, and Fitzgerald), 309
Sullivan, Anne, 180
Sullivan, Ruth, 293, 294
“Summary of Dietary, Nutritional, and Medical Treatments for Autism” (Adams), 106, 107
Sundberg, Mark L., 114
“supermarket test,” 282
supervised living programs, 311
supervision, future care, 177
Supplemental Security Income (SSI), 87–88, 178, 297
supplements, nutritional, 11, 105–6
supported employment, 300
supported living programs, 311
Supported Typing/Facilitated Communication (FC), 120–21, 122–23
survival skills, new diagnosis, 78–83
Swearingen, Dan, 254–55
Switzerland and ASD, 9
SymPlay, 118
symptoms means diagnosis (myth), 4
synesthesia, xx
tactile sensitivity, 54, 315
Taking Care of Myself (Wrobel), 155
taking charge, making a difference, 84–86
Talents: Careers . . . (Grandin and Duffy), 245
Talk About Curing Autism (TACA), 17, 59, 103, 107, 328
Tammet, Daniel, 11
task analysis, ABA, 113
Taubman, Mitchell, 117
TEACCH, 237
“Teacher Education” (COPSSE), 185
teachers, meeting, 208–9, 225–26
teaching assistants, 219
Teaching Children with Autism to Mindread (Howlin and Baron-Cohen), 126
Teaching Developmentally Disabled Children (Lovaas), 117
Teaching Language to Children with Autism . . . (Sundberg and Partington), 114
“Teaching the Skill of Waiting” (Autism College), 142
teaching tips, 197, 232, 236–37
See also education

technology advances, 16
temper tantrums, 7–8, 55–56
Temple Grandin (movie), 299, 305
testosterone, 153
Theory of Relativity, 7
therapies, 5, 89–132, 277
therapy balls, 237, 286
Think College, 309
Thinking About YOU Thinking About ME (Winner), 125
Thinking in Pictures (Grandin), xv, 6, 127, 128, 280, 301, 315
Tissot, Cathy, 90
toilet training, 151
tolerance, educators, 219, 223–24, 227
Tomatis, Alfred, 110
touch (reactions to), meaning, 54, 315
transitional models, housing, 311
transition planning, 233, 240–41, 243–46, 288–89, 292, 295, 301
Trautman, Melissa L., 126, 230–31
traveling, 147–50, 233
treatments, 5, 89–132, 277
T-stools, 237, 286
Turner, Zahava, 105
tutors, 259–74
“Tutors, Babysitters, and Respite Providers” (xx), 175
Twachtman-Bassett, Jennifer, 191, 202
Twachtman-Cullen, Diane, 191, 202
22 Things a Woman . . . (Simone), 172, 320
twins and autism study, 43
UCLA Young Autism Project, 116
UCSD, 17, 36, 44, 118
Understanding Applied Behavior Analysis (Kearney), 238
Understanding Autism (video series, OAR), 228
United Kingdom and ASD, 13, 36, 39, 45, 90, 131
United Nations, xvii
United States and ASD, xix, 12–13, 17, 35–38, 182, 289, 293
universities (four-year colleges), 305, 306
Upper School for the McCarton School, NY, 292
Urban Land Institute Arizona, 310
U.S. Attorney General, 269
U.S. Bureau of Labor Statistics, 303
U.S. Department of Education, 12, 184, 215, 228–29
U.S. Department of Health and Human Services, 38, 87, 162, 297
U.S. Department of Labor, 297, 303
U.S. National Association of Colleges and Employers, 303
U.S. Pharmacopeia (USP), 105
vacations, 147–50
Vaccine Book, The (Sears), 48

vaccines, 11, 13–14, 41, 44–45, 48, 49
Vadasy, Patricia F., 169
Verbal Behavior Approach, The (Barbera and Rasmussen), 114, 116, 117
Verbal Behavior Milestone Assessment and Placement Program, The (Sundberg), 114
Verbal Behavior (Skinner), 114–15
verbal behavior (VB), ABA, 114–16
Vermeulen, Peter, 240
Vicker, Beverly, 274
video records, new diagnosis, 63–64
violence and ASD (myth), 7–8
Virgil, 220
“Vision and Its Valiant Attempt to Derive Meaning from the World” (Hillier), 111
vision therapy, 111–12
visiting schools and classrooms, 198–200
Vismara, Laurie A., 62, 150
visual processing, 93, 194, 236, 237, 282–84, 308, 315
Visual/Spatial Portals to Thinking, Feeling, and Movement (Wieder and Wachs), 112, 119
vitamin and mineral supplements, 11, 105–6
vocational colleges, 305
Wachs, Harry, 112, 119
waiting, teaching your child, 142, 147, 148
waiting lists for services, 63, 64, 241, 293, 312
Wakefield, Andrew, 13–14
Wallace, Teri, 186
WAPADH, 123
websites and ASD, 11, 65
See also specific organizations
Wehman, Paul, 245, 305
Weintraub, Karen, 62, 99
“Welcome to Beirut” (Rzucidlo), 322
“Welcome to Holland” (Kingsley), 321–22
Wendel, Danielle, 164
“wet dreams,” 153
what causes ASD?, 21, 27, 34–50
What Is Autism? (Sicile-Kira, C.), 62, 144, 275
what is autism spectrum disorder and how to know if a person has ASD, 12–13, 18–33
What Your Doctor May Not Tell You About Children’s Vaccinations (Cave), 50
why people with ASD act the way they do, 15, 24–27, 50–56, 93, 274–75, 277
why seek a diagnosis?, 19–20
Why Your Child Is Hyperactive (Feingold), 102
Wieder, Serena, 112, 119
Willey, Liane Holliday, 6, 11, 22, 79, 164, 245, 277, 280, 315, 318, 320
Williams, Donna, 6, 11, 18, 57, 89, 94, 127, 128, 232, 277, 281, 318
Wiltshire, Stephen, 2
Wing, Lorna, 9
Winner, Michelle Garcia, 125
Wisconsin Department of Public Instruction Autism Training Team, 212–13
Wolf, Lorraine E., 308

Wooden, John, 7
work ethic of autistic people, 303, 304
Work in Progress, A (Leaf, McEachin, and Harsh), 117
work transition, 240–41, 243–46, 295, 301
See also adults, living and working with ASD
Wright, Pamela Darr, 178, 191, 214
Wright, Peter W. D., 178, 191, 214
Wright, Suzanne and Bob, 17
Wrightslaw (Wright and Wright), 191, 214
Wrobel, Mary, 155
you are not alone, new diagnosis, 58–59
Young Leader for the Autistic Global Initiative (ARI), xx Your Life Is Not a Label (Newport and Newport),
6, 159, 287, 298, 303
Youth Representative to the United Nations (ARI), xvii YouTube, xvii, 142
Zaks, Zosia, 6, 11
Zibricky, Greg, 179
Zick-Curry, Karla, 220–23

Chantal Sicile-Kira is a parent, an advocate, a speaker, the award-winning author
of five books, and the founder of autismcollege.com, which provides practical
information and training online. Chantal’s first experience with autism was
teaching self-help and community living skills to severely developmentally
disabled and autistic adolescents in preparation for their deinstitutionalization.
Chantal has served on the California Senate Select Committee on Autism and
Related Disorders, and as co-chair of the South Counties Autism Regional
Taskforce.
Chantal has received numerous awards including the Autism Society of
America Literary Work of the Year Award; San Diego Book Awards; Cure
Autism Now Local Hero Award; and the 2012 Baron Inspiration Award. Chantal
and her family have been featured in the MTV documentary True Life series,
Newsweek (cover story), NPR, PBS, the Chicago Tribune, and Fox News. For
more information, go to autismcollege.com.

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