‘All my life suddenly made sense’: how it feels to be diagnosed with autism late in life

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Jon Adams was 52 when he learned he had Asperger syndrome. As adult referrals rise, he and others explain the impact – good and bad – of a late diagnosis

 One day during his last year at primary school, Jon Adams drew a picture of a street in Portsmouth, the city where he still lives. The scene he drew had no people in it, but its representation of everything else suggested a talent beyond his years.
The headteacher happened to see the picture, and said he wanted to put it up in the school’s entrance hall. “And that was an honour,” Adams says, “particularly for someone who didn’t think they were any good, because they’d been told they weren’t any good, every day.”
Adams was asked to write his name on the back, an instruction that threw up a choice. He had difficulties with writing, and he knew his class teacher could be cruel. “If I asked for help, I knew what he would say: ‘Oh, he can’t even spell his own name, what rubbish is that?’ So I did it myself.”
The teacher called Adams to the front of the class. “I went up, gave it to him, he held it up in front of the class, and then he tore it up. He said, ‘He’s spelled his name wrong – he’ll never be anything.’”
This happened 45 years ago. In recent years, Adams has been treated for post-traumatic stress disorder, caused at least partly by that episode, and how long it lived on, not just in his memory, but in his understanding of the world and his place in it. The story says a lot about the inhumanity that was once rife in the British education system; but it also shines light on what it’s like spending a lot of your life being not just misunderstood, but routinely insulted. “Someone telling you you’re no good every day worms its way inside your head,” Adams says. “Inside, you know you’re all right, so there’s this conflict going on.”
Since April 2013, Adams has known that he has Asperger syndrome – or, to put it another way, that he is autistic. Ten minutes online will tell you that Adams’ condition comes down to a so-called “triad of impairments” to do with social interaction, communication and imagination, or what some people call “flexibility of thought” – although the fact that Adams is a prolific artist suggests that, in his case, that last criterion might be misplaced.
Since 2013, many diagnoses of autism have also included a range of sensory issues, among them aversions to certain textures, sounds, smells and tastes, as well as a deep dislike of sudden noise. In Adams’ case, these seem to blur into a complex kind of synaesthesia: he understands music as something he can touch, and experiences the colour yellow as a profoundly unpleasant taste, like mould.
Adams sometimes talks about his condition in front of an audience, and there is one question that always comes up. “It goes: ‘My son’s eight, he sits in his room all day, he does Lego, he does complicated drawings, he won’t talk to anyone else – how do I make him socialise?’ Well, you don’t. He’s made his world. One day, he’ll show it to you. Don’t let him grow up thinking that the way he’s thinking and what he’s doing are faulty.”
Jon Adams was formally diagnosed at the age of 52, at an NHS clinic run as an offshoot of Cambridge University’s Autism Research Centre, after he was referred there by his GP. The initial spark had been a meeting with the centre’s founder and director, Simon Baron-Cohen (the cousin, in case anyone was wondering, of Sacha), who had spoken with Adams at the Cheltenham literature festival
Adams had begun to realise what sat under a lot of his experiences; at the time, the biography that accompanied his work as an artist included the words “probably autistic”. From May 2012 until June 2013, he worked as the research centre’s artist-in-residence; immediately afterwards, a specialist gave him his formal diagnosis, a process that involved an interview and something akin to a questionnaire. “I got the letter through, saying I scored 18 out of 18 autistic traits, and I had Asperger’s,” Adams says
I meet Baron-Cohen in a crowded Starbucks near St Paul’s Cathedral in London, where he wryly comments on the mixture of chatter, clattering cups and muzak – “For a lot of autistic people, this would probably be hell” – and casts his mind back over the 35 years he has been thinking about and researching autism. He started working with six autistic children in a special unit in Barnet, north London, in 1982. Fifteen years later, he set up the Cambridge research centre; two years after that, in 1999, he opened a clinic dedicated to diagnosing autistic adults.

“There was a growing awareness that autism wasn’t just about kids,” he tells me. “I was receiving more and more emails saying, ‘My son’s an adult, but he’s never fitted in. Might he have autism?’ An adult couldn’t go to a child and adolescent clinic, so where were they meant to go? If they went to a learning disability clinic, and they had an IQ above 70, they’d be turned away. So these people were like a lost generation. That was a phrase I used a lot.”

The National Autistic Society estimates that there are currently around 700,000 people living with autism in the UK – more than one in every 100 of the population. Some of these people have learning disabilities. Some are what the medical vocabulary terms “non-verbal”, or unable to speak. Others are so-called “high-functioning”, a sub-group that includes those with Asperger syndrome, the condition named after the Austrian paediatrician who in the 1940s worked with a group of children he famously termed “little professors”. Asperger syndrome is distinguished by the fact that people who have it display no language delay as toddlers or small children. (Asperger died in 1980, long before the term “Asperger syndrome” entered popular usage. It has since been dropped from the relevant American diagnostic manual, but is still used in the UK.)

It is among this latter group that you will find many of the 20% of autistic people currently thought to have been diagnosed as adults. No national figures for adult autism diagnoses are available, but anecdotal evidence suggests numbers are rising: Baron-Cohen tells me that four years ago, 100 cases in Cambridgeshire were referred to his clinic; in the first four months of 2016 alone, it received 400 referrals.

Most of the terms used to describe autism don’t do justice to the nuanced, complicated traits bound up with it. Nonetheless, all its variants are covered by the catch-all term autism spectrum disorder, or ASD; people who dispute that autism is any kind of “disorder” prefer the term autism spectrum condition. The word “spectrum” was first used in this context by the pioneering British researcher Lorna Wing, who died in 2014. Baron-Cohen explains: “What she meant at the time, I think, was a spectrum within those who come to clinical attention. Where it’s gone since is that this spectrum runs right through society, out into the general population.”

My own interest in autism began when my son James received a diagnosis of ASD at the age of three. Back then, some things seemed strange: the social distance between him and his peers; his fixations with particular music (the Clash, the Beatles) or places; his pointed dislike of some foods or sounds (I still curse whoever invented the public toilet hand-dryer); his amazing facility with technology. Now, these things are simply part of the fabric of our shared life. I recognise echoes of myself in some of these traits (the music, the technology), and of plenty of other people: more than anything, his 10 years have brought me an ever-growing understanding of the complexities of human psychology, both among those diagnosed as “on the spectrum” and so-called “neurotypical” people.

Unfortunately, the everyday world has yet to catch up. Only 16% of adults diagnosed with autism in the UK are in full-time, paid employment. In 2014 Baron-Cohen’s team found that two-thirds of the patients in their clinic had either felt suicidal or planned to kill themselves, and that a third had attempted to do so. “To my mind, this is nothing to do with autism or Asperger syndrome,” he says. “These are secondary mental-health problems. You came into the world with autism, and the way the world reacted, or didn’t react, to you has led to a second problem, which is depression. And that’s preventable.”

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