Challenging Autism Misconceptions: A Conversation with Clinical Psychologist Jose Negrin

I recently had the privilege of speaking with Jose Negrin , a clinical psychologist with extensive experience in treating Autism Spectrum Disorder (ASD) in both adults and children. In our conversation, we explored autism from a deeper perspective, challenging many of the common misconceptions surrounding it. This interview was incredibly insightful, and I must admit, it made me realize just how much there is still to learn about ASD. I hope you find it as enlightening as I did. Before diving into the interview, let me share a bit more about Jose’s impressive background.

Jose began working with individuals with ASD in 2014. His career journey has taken him through a wide range of roles, starting as a teaching assistant at a school for children with learning disabilities. There, he worked closely with children on the autism spectrum, gaining invaluable hands-on experience in supporting daily activities, understanding behaviors, and managing challenging situations. As he advanced in his career, Jose obtained his certification in the UK, as a clinical psychologist, where he gained further experience within Child and Adolescent Mental Health Services (CAMHS), managing the neurodevelopmental pathway, which included complex ADHD and ASD cases. He has also become deeply involved in conducting ASD assessments and providing diagnoses as part of a multidisciplinary team (MDT).

Jose’s most recent role was at a large special school, home to over 700 children, more than half of whom have a diagnosis of ASD. He pointed out the significant rise in ASD diagnoses over the past decade, a trend that remains largely unexplained. “In the last 10 years, cases of ASD have skyrocketed, there are many different theories about this trend, but nobody really knows why,” he observed.

Now, let’s hear from Jose himself as he shares his insights on autism.

People often misunderstand the concept of the autism spectrum. Can you explain what it means and how severity is classified?

In ASD, there is enormous variability in how cases present. Some typical ASD cases, such as non-verbal individuals with stereotyped behaviors and great difficulty to create relationship with others, will require very substantial support, which is considered ‘Level 3’. Then, there are Level 2 cases, which require substantial support, and Level 1, which require support.

Some Level 1 cases used to be referred to as ‘high-functioning ASD or ‘Asperger Syndrome’. However, the term ‘high functioning’ and ‘Asperger’ are virtually gone since changes were made in the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5). Nonetheless, many people still using these terms. This new system was introduced as an inclusive and easy way to gather all the cases within the spectrum. At the bottom, we have individuals requiring very substantial support — people who might be non-verbal, have other disabilities, including mental health disorders , and who may never live independently. They need support with basic tasks like toileting, eating, and other activities.

As you move up the spectrum, individuals requiring support can function well in society. In my experience, someone like Elon Musk, who has an ASD diagnosis, would clearly fall into the category of requiring support. However, when you look at him as a business man, he does not need support, he might be even a genius. But when you observe how he speaks or behave, you can tell there’s some difficulty there. He has been known to treat people harshly or speak rudely to them. Many people who have worked with him have mentioned how tough he can be.

I recently watched an interview with his father, who shared a story from when they were in South Africa. His teacher had told his father, “your son is retarded.” The father was understandably upset and asked why the teacher had said that. The teacher explained that one day, during a literacy lesson, Elon had been staring out of the window for about 30 minutes, looking at a tree. The teacher went over to him and asked what he was doing. Elon responded, “We’re in autumn here, and the leaves are falling. The colors are changing.” It might sound trivial, but it was actually a very good observation. He was more interested in nature, the changing of the leaves, and the tree, than in the literacy lesson. Traditional education clearly did not fit him, which is why he seemed distracted – it just was not motivating for him.

The number of autism cases has been increasing significantly. Why do you think that is?

One of the most striking experiences I had was working at a large special school in Enfield. Over ten years, the proportion of students with ASD rose from about 10 or 15% to over 50%. It felt like the school was transforming into an ASD-specialist school. Despite the increase, it is still unclear why the number of cases has grown so drastically. I have a few hypotheses but we still do not know why we are having this overwhelming amount of new cases. In some cases, I think there may be a degree of overdiagnosis. For example, ADHD and ASD can present similarly in very young children, but ADHD cannot be formally diagnosed until the age of five. This leads to situations where ASD is diagnosed earlier, sometimes as a way to secure necessary support. Additionally, societal awareness has increased, which may lead to more parents and professionals seeking assessments.

How can parents and educators identify when a child may need an autism diagnosis?

Having worked with many children, I can often spot signs quite quickly, but it is not an exact science. Key indicators include difficulty with social interactions, a strong sense of justice, struggles with self-regulation, physical mannerisms like rocking or hand-flapping, and limited eye contact. Funnily enough, I have worked with children with ASD that had the opposite, they maintained very good eye contact. I think, as a clinician, you get pretty good at spotting the signs, and again, it is not magic, it is experience. For example, in one of my previous jobs I had to go to different schools, and then the teachers sometimes came to me, “we have this case, we think it might be ASD”. Most of the time, I could tell after a short time whether it was definitely not ASD, definitely ASD, or if we needed a full assessment.

Sometimes you can see them talking to themselves loudly, sometimes they walk on their tiptoes. At times, they speak too much, and it is not very clear what they are saying, and they do not let the other person talk. They will go on because they think about so many things at once that it is difficult for them to stop and follow the social rules in a conversation.

On the other hand, you can have children that barely talk to you, they will not look you in the eye. That is one of the criterium for the ASD diagnosis, but you have to be very careful with this – just because a child does not look you in the eye, that does not mean they have autism. Sometimes children are very shy, they do not look people in the eye. I know plenty of adults that do not like to look people in the eye and this is a normal thing.

So, even with some of the criteria, we have to be very careful. We cannot just go by the book. The DSM-5 is my main manual of reference, but I have learned that it is a guide only. You also need to go with experience and you are your observations and what the family say about the child.

Families often face stigma and uncertainty when dealing with autism. How can they support their loved ones and themselves?

In the UK, awareness has grown significantly over the past decade, and parents are more accepting of a diagnosis. If you move outside specialist schools and you go to mainstream, in my experience, then you might have some parents a little bit worried if their child is going to be bullied, or if their child is going to be put in a special school, or if their child is going to suffer. But again I see more acceptance in the UK.

However, there is still resistance in some cultures, like in Spain or the Canary Islands, where families might avoid diagnosis out of fear. If you ask parents or caregivers whether they prefer their child to have a diagnosis because they have needs versus not having a diagnosis, I think they will say they prefer their children not to have a diagnosis and that is a massive problem.

It is crucial to provide families with practical strategies and community support. Parents can connect with local ASD associations, which offer resources and guidance. Schools and healthcare providers are also valuable sources of support.

What does lifelong treatment look like, particularly for severe cases?

Lifelong management is common, especially for severe cases requiring substantial support. I always apply behavior analysis, where you look at their behavior at school and outside the school, in the community. So, you assess exactly all the behaviors, the possible triggers, their reactions and then what you need to provide them with strategies to cope better. That is number one. Then there are strategies like play therapy, where the children go to therapy to play but the therapist also introduces other techniques to help them out. It is about helping them to control their anxiety at the early stages of ASD, which is really key, and this can be done by a therapist, a counsellor, or a clinical psychologist. In parallel, you can have another therapist focusing on education (educational psychologist) , which will assess the needs of the child and try to match them with the offer of the school, for example how to adapt lessons to needs, strategies that can be implemented during a lesson, sensory stimulation, etc.

Socializing with other children and having a group that you can be part of is also really good. Remember that most children will copy others. So, for example, if you have a group of children with ASD who have been coming to school, they have gained some abilities and now they demonstrate good behavior and they can go out for a bit to do an activity. At the same time, if you have a new child coming to that group very dysregulated, just by being in the group, that child is very likely to copy the behavior of the others, and maybe we do not have to do anything as a therapist. If you just keep them in the group and let them observe the other children doing something, I would say that 90% of the time, they will join in.

If they need medication to help with other difficulties (e.g. high levels of anxiety or severe challenging behavior), they might need to be seen by a psychiatrist, so there is a wide variety of therapies that can work with ASD depending on the case.

If a family cannot afford therapy or they have to wait a long time through the NHS, what are some of the things they can do to support their child?

In the UK, I would say the first thing is to ask the child’s school to refer them to CAMHS. There, they will guide the family on what to do. Another thing parents can do is go to their local authority and find out whether they have an ASD association they can join. Nowadays every borough will have an association or a charity specialized in ASD, which parents can join for free. Sometimes they offer therapy or other support to parents for free or at a low cost. I would also recommend the big charities, for example, Autism Speaks, where parents can find helpful information.

Schools are really important if they are under 18. The school can guide parents – when I work with a child with ASD at a school, most of the work is with the families, too. I have had cases where I have barely worked with the children but rather had video calls with the mom and dad, for example. I will give them guidance, will explain behaviors and will advise on what to do, what not to do. The parents will implement all these suggestions at home because at the end of the day I am never going to be the one implementing these strategies at home.

So, GP, schools, the council and then always looking what is available through the charities in the area.

Do you think the general population lack sufficient education regarding ASD?

Absolutely. We still do not have enough information as a society. There are many misconceptions about ASD. For example, the lack of eye contact we discussed earlier, where parents might think their child has ASD because they “do not look at me or other people in the eye”. Things like that. A lot of people will say, “my child has a little bit of autism” or “I have a little bit of autism myself”. Today, talking about ASD and ADHD has expanded beyond mental health professionals to the wider public, much like terms such as:  PTSD, panic attacks, OCD, or borderline personality disorder. People now talk about these conditions as if they fully knew what they are talking about, but in most cases, they do not. Another common example is the widespread use of phrases like  “[my] ex was a narcissist”, despite not knowing what a really narcissist is. Just because someone has behaviors or tendencies that align with a mental health disorder, that does not mean they have the diagnosis.

People often assume that ASD means an intellectual disability. However, we still use standardized tests to measure IQ, and some people with ASD can score very high in some areas, high enough that they could be considered  gifted. Therefore, not all of them have an intellectual disability; that is a big myth. When it comes to being considered geniuses, I think it is because they might be very good at something, due to their intense focus on specific things. For example, if I like trains or dinosaurs, I will learn everything about them, to the point that I will consume all the information regarding that subject. That is the reality. And maybe you can compare yourself to a proper university expert. Why? Because that is all you are really interested in.

Another misconception is that people with ASD are antisocial and do not have friends. I completely disagree. They can have friends, and I do not think they are antisocial at all. I would say that if you measure antisocial behavior in the average person, they clearly have more antisocial behaviors than people with ASD.

People also think all people with ASD engage in repetitive behaviors like rocking or hand flapping. This is simply not true. Some children with more severe ASD might exhibit this behavior, but others do not experience it at all, or at least, it is not noticeable.

A few other misconceptions: “Children with ASD will outgrow it.” No, that is not going to happen. “ASD is caused by bad parenting.” No, that is not true. “All people with ASD are nonverbal.” No, that is also not true. Some of them have beautiful speech and can speak 10 times better than me. “People with ASD struggle to experience emotions or empathy.” No, because when you see them having an anger outburst or being very dysregulated, they are feeling emotions intensively, which is why they cannot manage them so well — they have emotions and can feel empathy for others in the same way as you and I. “Vaccines cause autism.” This theory has been debunked.

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This insightful interview with Jose Negrin underscores the complex and diverse nature of Autism Spectrum Disorder. It highlights the critical need for increased societal understanding and the dismantling of pervasive misconceptions. As we strive to create a more inclusive world, it is imperative that we move beyond mere awareness and commit to providing accurate diagnoses, accessible support, and practical strategies for individuals with ASD and their families.