Autism can take different forms. Photo / 123RF
While people on social media casually identify as ‘on the spectrum’, those whose lives are changed by their condition are being overlooked.
“Looking back, it was obvious,” Agatha said. “I don’t know how we missed it.” She was telling me about her son, Elijah, now 20. “When he was 1, he had no words. He flapped his hands continuously. He was quiet, and I remember thinking we were lucky to have such a good baby. When he was a bit older, we could just pop Peter Pan on, and he’d sit and watch it for hours. And he’d jump up and down and say ‘eee eee eee’, over and over and over… and we used to think, ‘Oh, isn’t that sweet’.”
Elijah has an older sister who has high-functioning autism. But even with that experience in the family, Elijah’s parents didn’t spot the early signs. When Elijah didn’t talk, Agatha told herself that boys learned to speak later than girls. Plus, Elijah was affectionate and cuddly.
“He wasn’t a loner, which is one of those tropes about autism,” Agatha said. “His grandmother did say she found him hard to bond with, but I didn’t because I suppose I loved him so much. I think I missed the signs because I didn’t really want to know.”
When Elijah turned 2, he still couldn’t speak. His parents took him to a clinical psychologist, and the first thing they asked was, ‘Does he point?’ He didn’t. Agatha learned pointing was an imaginative gesture and not pointing was an early sign of autism. His other behaviours fell into place. Elijah insisted on lining up his toys, reflecting his need for order. His constant hand flapping and bouncing were consistent with repetitive behaviours, or stims. After a detailed assessment, Elijah was diagnosed with a learning disability and autism.
As he grew older, Elijah’s autism became even more apparent. Routines were very important. He would only eat one meal — chicken nuggets and beans. If, after finishing his dinner, any ketchup remained on the plate, it had to be washed immediately, even if they were eating out in a cafe. Although a very loving child, he started to exhibit many of the challenging behaviours seen in people with severe autism. He hit his head on the floor repeatedly and punched his own head if upset. He ran up and down manically, irrespective of where he was. He had no sense of risk or danger. Agatha had to watch him constantly to keep him and other people safe. If he was frustrated, he could bite and hit out at strangers. He needed round-the-clock care and help with every sort of activity.
“He was so beautiful,” Agatha said. “He had lovely curly blond hair, but when he sat on people’s knees I’d have to warn them to be careful in case he suddenly head-butted them.”
For Elijah at 20, that hasn’t changed. He still bounces for hours at a time and hits out at strangers as he did when he was 2 — except now he is a 1.8 metre, 98kg man.
“What frustrates me,” Agatha said, “is that the whole autism discourse is being dominated by the mild voice.
“And that is having real-world consequences for my child. It affects services and funding. A school for autism opened up nearby but they’ll only take children with a normal IQ who can meet the national curriculum. Increasingly, schools are only catering for the high functioning. Hospital waiting lists are too long. Children such as Elijah are being neglected.”
Fifty years ago, autism was said to affect four in 10,000 people, but today, the worldwide average prevalence is one in 100. In 2023 in California, one in 22 8-year-olds was said to be autistic. In the same year, diagnostic rates in Northern Ireland were put at one in 20 children. Between 1998 and 2018, autism diagnoses rose by 787% in the UK. There have been other shifts, too. Autism used to be thought of as a disorder of boys. In the 1980s, the male-to-female ratio was 4:1. That ratio is now 3:1 and rapidly approaching 2:1.
The astonishing increases in the prevalence of the disorder are what has led to the concern for some that autism is now significantly over-diagnosed. Contributing to that concern is how difficult it has become to distinguish an autistic person from a non-autistic person. In 1943, autism was an infantile-onset disorder diagnosed in children who had profound social communication problems. I see many people with this level of autism disability in my clinical practice. Most cannot communicate verbally. They require assistance for every ordinary activity of daily living, such as dressing and bathing. Most need constant supervision to keep them safe. Contrast that with today’s growing autism community, which includes entrepreneur Elon Musk and actor Anthony Hopkins.
However, others applaud the improved diagnosis rates and even say underdiagnosis is ongoing, especially in females and adults. What is clear is that what autism looks like now is very different to what it looked like when first described. In 1943, child psychiatrist Leo Kanner published a detailed description of 11 children, eight boys and three girls, under his care who he believed had a unique medical disorder manifesting as an “extreme autistic aloneness”. The characteristic feature was a complete inability to relate in any ordinary way to others. People mattered as much to these children as bookshelves and filing cabinets. They related no better to their own family members and other children than they did to strangers. The children were rigid and obsessive and made monotonous noises and repetitive movements.
My personal concern about the over-diagnosis trend in autism, is the effect over-diagnosis seems to be having on adults with severe autism, such as those I look after. Those severely disabled people who could not live in the world without support. They are now in a queue for resources alongside people with considerably fewer difficulties. My patients with severe autism are not represented on TikTok, where people celebrate their great relief at being diagnosed and call for affirmative diagnosis and ask for words such as “spectrum”, “disorder” and “impairment” to be removed from the language of autism. Those with the greatest need are becoming invisible.
One 2023 study found that #Autism had attracted 11.5 billion views on TikTok. But of the top 133 most-viewed videos, only 27% contained accurate information. The respected mainstream media in all forms is also guilty of creating a somewhat romanticised view of the disorder, presenting it as something that makes a person special rather than a developmental disorder that causes impairment. Remote diagnoses of autism are given to successful people with covetable careers and lives, even if those people have never publicly claimed to have a diagnosis, with philanthropist Bill Gates and director Tim Burton among them. Deceased figures have also been diagnosed in retrospect — Michelangelo, Charles Darwin, James Joyce and Albert Einstein.
Celebrities make bold statements about neurodevelopment disorders without seeming to understand much about them. In 2018, singer Robbie Williams told a newspaper, “There’s something missing in me, I have big blind spots. Maybe Asperger’s or autism. I don’t know what spectrum I’m on — I’m on something.” The general public has also developed a very casual way of referring to people with mild social awkwardness as “on the spectrum”.
In this atmosphere, families such as Elijah’s feel misunderstood. Elijah did attend mainstream school in the first instance. He didn’t make friends. He didn’t seem to know what friends were for. Still, mainstream school helped him accommodate to crowds. It also helped the other kids learn to be around people such as him. He had a one-to-one tutor and lessons were differentiated for him. If the class was doing maths, Elijah did a counting task. He learned to count to a basic level and learned to read phonetically. However, by age 7, the gap between Elijah and the other children had grown too big, so his family moved him to a special needs school.
Aged 20, Elijah can speak in short, simple sentences of up to five words. When I met him, he was gripping four fluorescent-coloured, highly textured plastic caterpillars close to his chest. If Elijah is awake, he has two things in his hands — his caterpillars and his iPad. He also loves swimming, tennis and discos. He still likes bouncing, so has a trampoline. He enjoys going to Starbucks for a latte.
Elijah continues to learn basic life skills. He has a job, filling fruit bowls and emptying the dishwasher at a local business. He can go to the shop and make small purchases. All of this is supervised. Left alone, Elijah would run in front of traffic. He requires the same level of care as a small child.
“He’s learned to use his own Amazon account,” Agatha smiled. “He buys caterpillars online. After he’s bought them, he goes to the window and says ‘postman, postman, postman’, over and over until they arrive.”
Everything that Agatha described is consistent with classical autism. His lack of interest in friends. His routines. His meltdowns. His obsessions with very specific objects. Elijah listens to the same song or YouTube video so continuously that Agatha has to persuade him to stop, lest the whole family go mad.
The family has worked very hard to help Elijah control his aggressive outbursts so he can live as normally as possible in the world. They use techniques to calm him if he gets upset in public. Agatha’s worst fear is that he might be institutionalised if he cannot control his behaviour.
Agatha and many parents of children with severe autism have grown concerned about how the current conversation around autism misrepresents the disorder and sidelines their children. “It’s a neurological disorder from birth. The public thinks they know what autism is by listening to the voices represented in the media. But these are people with a normal IQ, who are verbal, who have proper jobs, who can attend meetings or log on to Zoom. These mild and self-identified people have no concept of people like Elijah. They assume all autistic people are a bit like them, but Elijah is not like them except for some very small commonalities.”
Agatha had voiced exactly what had concerned me as I interviewed people for my book and also watched autistic people telling their stories to the media. As things stand, autism representation in the public arena, on the boards of businesses, charities and academic panels, is heavily skewed towards those with lesser care needs, most of whom live normally in society without any obvious outward autistic traits because they can mask.
Some autism activists criticise parents of non-verbal autistic children, such as Agatha, for speaking for their children. They believe only autistic people can speak for autistic people. Strategies to help people such as Elijah to control their behaviours have been called cruel on the basis that an autistic person should never be asked to change their autistic traits because that is like asking them to change their identity.
Some who I spoke to, such as Miles, 60, a retired banker with three adult children, diagnosed with autism in his mid-50s, were certainly of the opinion that a person with autism should be encouraged to display all their autistic traits fully, and were completely against any medical intervention that had the opposite effect. Miles does not consider autism a mental health disorder and rejects the phrase autism spectrum disorder, the official Diagnostic and Statistical Manual of Mental Disorders (DSM) terminology.
Agatha does not share this view with regard to her son and his severe diagnosis. “I needed to teach Elijah to tolerate sounds he couldn’t cope with, such as babies crying. If I didn’t teach him that, I’d be narrowing his world. If I took the advice of people with mild autism on Twitter and on the radio, Elijah would end up in residential care with risperidone [a strong antipsychotic drug used to control aggressive behaviour in autism] being pumped into his veins and five people holding him down,” Agatha said. To keep Elijah safe, Agatha tells people he has the mental age of a 4-year-old. She wants anybody caring for him to remember that he might look like a man, but he still has the needs of a child. But in referring to her son in that way, she has been accused of infantilising him.
“The way the mild and self-identified autism movement talks about autism feels to me as if they dislike intellectual disability. People don’t want to believe that their kid has a low IQ or is below average. They want to believe that inside is a secret smart kid. But I love Elijah for Elijah, with his IQ below 50. You and I learned to read easily, but for Elijah, every word he learned was so hard won and so precious. I value him for his actual intellect — not for some fantasy.”
Elijah has very high care needs and every bit of progress he has made has been fought for by him and his family. In my day job as a neurologist, I meet lots of people similar to Elijah. I see many parents similar to Agatha interact with their severely disabled adult children and it is often awe-inspiring. They have come to know their non-verbal children in the most intimate way, until they can read their needs from small changes in expression and temperament.
“The public don’t really recognise Elijah’s part of the spectrum as autism any more,” Agatha told me. “I have protocols for his meltdowns. I create distance so he can’t head-butt me.
“I have to say very sternly, ‘You need to calm down.’ I say it over and over. I have to show him that this is serious so he knows he has to regain control. I was doing the protocol on the bus recently and I realised all the other passengers were staring at me. I had an audience,” she smiled. “So I turned around and I said, ‘This is what autism looks like, not what you saw on the telly last night!’”
“What did they say to that?” I asked.
“They looked away.”
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