Why Autism Spectrum Disorder Is Still So Misunderstood – And More Common Than You Might Think

Mike Shallcross
·10-min read

"Would you be upset if we told you that your son was autistic?" the child psychologist asked me. I looked through the glass into the next room, where my sweet-faced eight-year-old was examining some puzzles, while I was trying to solve one of my own. I was emphatic. “Not at all,” I replied.

“J” had always been a bit of an enigma to us. An unusually quiet and laid-back baby, he was a late walker and an early talker with an often-hilarious propensity to co-opt adult speech. At three, he started nursery and amazed his teachers by reading storybooks from start to finish. News spread that he had mastered reading, and the ambitious mum of one his classmates approached us to ask, “What method did you use?” We had to admit that we didn’t have one.

As J grew older, he began to struggle socially. The party invites and play dates dried up, and sending him to school in the morning could be a bit like managing Luis Suárez. We had no idea whether we were going to be met at the school gate by a beaming teacher for whom he’d solved a maths problem, or a concerned one who’d had to deal with a meltdown. J’s donnish vocabulary fooled many an adult into treating him as older than his years, when emotionally he often seemed much younger.

We were given a diagnosis of “high-functioning Asperger syndrome” and a handful of leaflets. It gave us quite a few answers but, for me, it also raised some more significant questions.

What Is Autism?

In short, autism is defined as a developmental disorder characterised by difficulties with communication and social interaction. Among its core symptoms are restricted interests and repetitive behaviours.

Our understanding of the disorder is built on the work of two men in the 1930s and 1940s: Leo Kanner in the US and Hans Asperger in Nazi-occupied Vienna. Until recently, it was widely accepted that they worked independently and had no knowledge of each other but, as writer Steve Silberman revealed in his brilliant history of autism , published in 2015, it's almost certain that Kanner was aware of Asperger’s work but refused to acknowledge it.

For many years, it was Kanner’s view that prevailed. He saw autism as a narrow, monolithic condition that was confined to children, and his main interest was in the severe cases: children who were non-verbal and needed constant care. He was also responsible for the first of many bad theories of what causes autism – that it was the result of having emotionally brittle mothers who were incapable of showing affection. Kanner estimated that autism was a rare occurrence, affecting one in 2,500 people.

Meanwhile, in Vienna, Asperger approached the disorder from a different angle. He was working with a cohort of youngsters he labelled his “little professors” and became as interested in the extraordinary aptitude they showed towards maths and science as he was in their social difficulties. He began to understand autism less as something to be treated and more as something to be learned from. His little professors’ inability to accept anything on faith wasn’t so much a rejection of authority but the seed of a sound scientific method and a genuine gift to society. Think of the eco warrior and Asperger's icon Greta Thunberg and her bullshit-shrivelling stare. He wasn’t wrong.

Unfortunately, Asperger was working for a university that, though once great, had become rotten under Nazi rule. He narrowly escaped arrest by the Gestapo and, in 1943, was drafted into the Wehrmacht and sent to the front line. The following year, his children’s clinic was flattened by Allied bombs, burying his ideas for a generation.

However, following his death in 1980, they were revived by a psychiatrist called Lorna Wing, who popularised the use of the term Asperger’s syndrome to describe high-functioning autistic people. Wing argued that autism was a spectrum rather than a category and had been under-diagnosed. She estimated that one or two children in 1,000 were on the spectrum. Researchers have since adjusted this to one in 100. Our understanding of the disorder has blossomed. Today, most scientists agree that it is genetic, which brings me back to J.

A Different View

The professionals who diagnosed my son rattled off a list of observations that basically could have described me at the same age. I, too, had been an early talker and an early reader; I had struggled with handwriting and sport; I had displayed signs of “pica”, a disorder characterised by an appetite for non-food objects. I particularly relished the metallic taste of spoons.

I was definitely an odd little boy. When I was five, my parents took me to a fossil exhibition, where I corrected the guide for wrongly identifying a dinosaur. I developed an exhaustive knowledge of black-and-white horror films and tried to see them all, ticking them off a list (autism researchers call this "systemising"). For my 10th birthday, my elder brother bought me a book of Edgar Allan Poe stories, and I lost myself in his Gothic dreamworlds of decadent detectives, savant madmen and doomed heroines.

There is something of the autistic in the painfully acute senses of his protagonists, their intense fixations (the “vulture” eye that incites a murderer in ) and their lack of impulse control – which Poe attributed to an internal demon he christened “the imp of the perverse”. One of his less Grand Guignol moments, the poem , became my mantra through my teenage years.

From childhood’s hour I have not been
As others were – I have not seen
As others saw – I could not bring
My passions from a common spring…

I found school immensely difficult. I was told that I was intelligent, but I had no conception of this and struggled with the work, the noise and social conventions. I would enter a mental state akin to putting my head underwater in a warm bath, where I could block everything out and be happily shut in with my own thoughts. At the age of 11, I discovered the music of Joy Division, and I had a friend for life. I could recite lyrics, track lists, release dates, equipment lists and even the catalogue numbers of their releases. Just imagine being a teenage girl stuck next to me at a party… (continued below)


J is a huge systemiser, and our house is littered with lists, charts, tables and maps he has drawn. Subjects he has picked up, catalogued and discarded include Chinese history, world football, Tolkien and the Marvel universe. By the time he was 10, a typical conversation with him could end with you being chided for not understanding the Treaty of Brest-Litovsk.

Another time, when we were watching a movie, the action switched to Moldova, and his brother asked where that was. “It’s between Romania and Russia,” I answered, confidently but inaccurately.

“That’s not strictly true, is it, Dad?” replied J sardonically. “Unless, of course, Russia has annexed the rest of Ukraine this afternoon without me noticing.”

I should add in an explanation here about "the spectrum". It’s often depicted as a sort of volume control, with high-functioning people at one end and severely autistic people at the other, but that is much too simplistic. “It overlooks the very wide variation that you see among autistic people, in terms of their language, characteristics and behaviours, and of the way they are able to get on in their day-to-day lives,” says Liz Pellicano, professor of educational studies at Macquarie University in Australia, who is running a major research project on the life stories of late-diagnosed adults.

High-functioning people are often characterised as lacking humour and unaffectionate, with a dislike of physical contact. J is neither, and in particular has a wicked sense of humour, which can range from being bone dry with adults to teenage gross-out with his friends.

A better way to think of the spectrum is as a palette of oil paints, with autistic people each having a bespoke variety of characteristics from which to make their own unique colour. “The colour chart is much better as a metaphor, as it takes into account those many ways that autistic people can be different from one another,” says Pellicano. In other words, if you’ve met one autistic person… you’ve met one autistic person.

The Big Question

It nagged at me for about a year before I took a test posted online by a US university. Any score above 32 indicated that you were on the spectrum. I scored 36, but was left worrying about confirmation bias. Had I subconsciously picked the most autistic answers in order to have this bond with my son, as well as to make sense of my own life?

Logically, the next step was to obtain my own diagnosis, but this is easier said than done. First, you need a referral from your GP, and then you might have to wait more than two years to be assessed. The former health minister and redoubtable mental health campaigner Norman Lamb has described this as “scandalous”. But it’s a tricky issue: the NHS isn’t awash with cash for mental health. Should I, a middle-aged man who – to the casual observer, at least – looks as if he is coping with life, be a clinical priority?

However, this ignores the reality that high-functioning autistic people are still vulnerable to mental health problems. According to the charity Autistica, half have suffered from depression, and they are nine times as likely to suffer from suicide ideation.

“There isn’t a lot of research on the experience of being diagnosed as autistic in later life,” says Pellicano. “Circumstances will differ from person to person, but many do report that their lives have changed for the better since receiving a formal diagnosis. They talk about feeling like they ‘understand themselves’ and their differences to others more clearly.”

Public awareness of autism may have changed over the past decade or so, but autistic adults still face considerable hardship. The latest research from Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge and the UK’s leading authority on autism, reveals that they still disproportionately experience “negative life events” – for example, 45% of autistic people often lack money to meet basic needs, compared to 25% of neurotypical people.

But he foresees a day when neurodiversity follows gender and ethnic diversity as standard in the workplace. “Brains come in different types, and they’re all normal,” he said recently. Certainly, in a time when no events seem to conform to normal patterns, people who can question convention and think outside the box might be just what we need. Bring on the little professors.

Knowing the Signs

There’s no such thing as a textbook case, and autism can express itself in a multitude of ways. But there are some familiar characteristics

Do you…

  • Find it hard to understand what others are thinking or feeling?

  • Feel anxious in social situations or prefer your own company?

  • Find yourself accused of being rude or disinterested when you don’t mean to be

  • Prefer to follow a daily routine and become uncomfortable if it changes?

  • Notice details, patterns or sounds that other people don't?

  • Like to plan things very carefully before doing them?

To get a diagnosis, you generally need a referral from your GP or psychologist. For more information on the process, as well as your GP's responsibilities, visit autism.org.uk

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