John Harris
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.
My son received a diagnosis aged three. He had fixations with particular music or places – traits I recognise in myself
“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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A week after talking to Baron-Cohen, I take the train to the Lancashire town of Wigan, to meet 68-year-old Peter Street, who got his autism diagnosis only 10 months ago. He is an impish, funny presence, and says he loves conversation, perhaps a little too much. “I get this deep urge – it’s a pain, almost, to talk to people. When I’ve described it to the therapist, I’ve said I’m like a bucket of water and it’s full. And then all of it comes out, and it empties.”
Peter Street: ‘I get too much for people, and they get too much for me.’ Photograph: Rosie Barnes
After 20 minutes, it becomes clear that Street has the most astonishing life story of anyone I have ever interviewed. His mother, he says, became pregnant with him when she was raped. In his native Bolton, the two of them were taken in by a man much older than her, who employed her as his housekeeper, and then married her and adopted Street to give the arrangement a veneer of normality. He grew up, he says, with no extended family and very few friends. “I get too much for people, and they get too much for me. A lot of the time, I overpower people. When I was a kid, when I made a friend, I would go and sit on their doorstep, waiting for them. I’m a really early riser, and I can’t cope with being late anywhere. I used to go and sit on the doorstep, maybe six, seven in the morning. And people obviously didn’t like that.”
His daily routine, he says, often revolved around an outside toilet, and his home’s back wall, which he would use for solo games of football and marbles. “And that was wonderful, in some sense. It wouldn’t have been wonderful for some people, but it was for me.” He also made endless trips to the cinema, where he acquired a forensic knowledge of Greek mythology; he mentions Steve Reeves, the musclebound 1950s actor who played Hercules. “I can take certain things in – really odd things, sometimes,” he says. “But I can’t take in what most people take in every day.”
At school, he found it almost impossible to tune in to the teachers. “They were shit with me,” he says. “They knew how to abuse. They were good at it. They were bullies. They used to stand me in the corner, in the wastebasket, and hit me over the head with the board rubber, to knock some sense into me. I’ve always blamed my epilepsy on that.” He started having grand mal seizures when he was 15; it is now estimated that around a third of autistic people also experience epilepsy, though the relationship between the two is something that neuroscience has yet to fathom.
Street left school unable to read or write. He passed through a series of jobs – a bakery, a butcher’s shop – some of which came to an end because he found it difficult to process complex instructions, before settling into work as a gardener and gravedigger. Along the way, he married his wife, Sandra, with whom he has three grownup children. “She doesn’t like being with people,” he says. “She’s very quiet, very introverted. In a way, she’s a mirror.”
In 1984, after breaking his neck while trying to climb into a transit van that was pulling away, Street began three years in recovery. While he was in hospital, he met a fellow patient who was an English teacher, and started to work with him on his literacy; then, through adult education, he discovered a talent for poetry.
While we talk, he hands me an anthology of his work, published in 2009, that begins with a poem titled Not Being Me, a perfect glimpse into the autistic experience of not fitting in:
Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see
if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out
In the late 1980s, Street began to teach poetry in schools and day centres; in the early 90s, he became a writer-in-residence at the BBC in Manchester, which led to a series of assignments. In 1993, he went to Croatia to write about the war that was then engulfing the Balkans. “People with autism, it’s often said that they have no emotion or empathy,” he says. “I have too much emotion, too much empathy. It broke my heart.” Three experiences preyed on him: a meeting with an 18-year-old abandoned in a refugee camp; an occasion when he gave his water ration to an emaciated woman with a newborn child; and the experience of eating a sumptuous meal in the town of Lipik, with “three or four kids at the window, looking in. And I didn’t have the balls to get up and go and give them my food.”
By 2014, his inability to put away these memories had become too much. “I went to a therapist. And she said, ‘I want you to go and see a friend of mine. She’s a specialist in diagnosing people with autism.’ I thought, ‘I’ll go along’, as you do. And she gave me these really strange games. They were like a jigsaw puzzle: four pieces. White. They were so simple, I thought I could do them – and I couldn’t.” He was handed five plastic figures and toys, and told to make a story with them. “And I couldn’t do that, either. I couldn’t connect them together into one story. She said I was highly intellectual, but on the autism spectrum.”
His response was one of enormous relief. “I cried. It was wonderful. Wonderful. Because all my life suddenly made sense. And none of it – the beatings, the abuse – none of it was my fault. Apart from my family and Sandra, I’d put it in the top five greatest things that have happened in my life. Absolutely, incredibly wonderful.”
***
Penny Andrews got her diagnosis of Asperger syndrome (though she is perfectly comfortable with the term “autistic”) when she was 30. Back then, she was a regular user of LiveJournal, the social networking site that was a forerunner of Myspace and Facebook, and one of her online contacts had begun to write about the process of finding out he was autistic. “He wrote about it quite openly: all the reasons he’d gone for diagnosis, what the procedure was like, seeing half a dozen different psychiatrists before he found one who would refer him for diagnosis,” she tells me. “And the more he wrote about it, the more I was like, ‘Oh, God, this is me.’”
Andrews is now 35. She also has mild cerebral palsy, which manifests itself in spasms in her ankles, knees and wrists. She is a para-athlete whose specialism is the 100m, and has a punishing training schedule. She wears a vintage Bowie T-shirt, has a wood-cut picture of the Yorkshire town of Whitby tattooed on her right arm, and is a prolific and waspish presence on Twitter. Andrews is currently awaiting a decision on the funding of her PhD, which is focused on the relationships between academic libraries and “data flows, digital labour, academic social networking services and governance in research support”.
At secondary school, boys pretend to fancy you. It kills you, because you take it seriously
Penny Andrews
She grew up in Nidderdale in the Yorkshire dales and now lives in Leeds. Throughout her childhood, Andrews says she had a deep sense of “everything being wrong, somehow. Being clever and being a supposedly interesting person, but never able to maintain friendships and always, inexplicably, saying something wrong.”
Autism among women and girls is only starting to be properly understood. The male to female ratio of autistic people currently stands at around 5:1, although Baron-Cohen says he and other autism specialists are currently in a “transition period” in their research: the actual figure may eventually turn out to be very different. “There’s a whole new topic researchers are latching on to, about camouflage: whether females – for whatever reason – might be better at hiding their autism,” he says, something that is borne out by Andrews’ recollection of her time at school.
“You’re not supposed to get on with people’s parents better than them when you go round to their houses. I didn’t really want to play with people – I just looked really aloof. I read the diary of Anne Frank when I was six, and I talked about the Holocaust. But I would try to copy other people, how they talked and acted. I’d watch TV programmes that other people watched so I’d have something to talk about. Neighbours and Home And Away.” She laughs. “I got a Tamagotchi when everyone else got them, but I had no interest in it.”
In the end, teenage etiquette and the nastiness that often comes with it proved too much. “Girls are cruel. They exclude each other, and pretend to be friends with each other, as a game. And I get sarcasm, but I don’t get insincerity. And then, at secondary school, boys pretend to fancy you, because that’s the most ludicrous idea they can think of. It kills you because you take it seriously. And they invite you to things, and then they don’t show up, or they’re round the corner laughing. All of that happened.”
Penny Andrews: ‘I would try to copy other people, how they talked and acted.’ Photograph: Rosie Barnes
She has been married to her husband, Emil, for 11 years. “Because he loves me the way I am, I’m completely myself with him.” How hard does she find it to read other people’s emotions? “It sort of depends. If somebody’s actually upset, I can probably feel it quicker than other people. I can feel it too much. But I can’t usually tell if people are trying to get out of a conversation: if people are trying to leave. You have to tell me: ‘We need to stop.’ I can’t tell whether people like me or not, which is hard.”
Plenty of non-autistic people have issues with that, I say, myself included. “But they seem at peace with it. Even with people I’ve known for a long time, I won’t know whether they like me or not unless we’ve had an explicit conversation: ‘Do you actually like me?’ Which turns people off.”
When it comes to understanding autism, how much does she think the world still needs to change? “Quite a lot. Because I think a lot of people still don’t believe it, or think it’s a really mild thing: ‘Well, it just makes it a bit harder for her to make friends, makes her a bit more anxious.’ A lot of the time, it’s stressful. Painful. When the sensory stuff is happening, it’s like you’re being Tasered.” Andrews mentions people flicking their train tickets, or jangling their coins, or whistling. “It’s not just, ‘That’s annoying.’ It’s, ‘That’s unbearable.’ I have said, ‘I’m really sorry, but can you stop doing that?’ But people don’t.”
I have one last question. Self-evidently, Andrews is what some people call “high-functioning”. When she meets autistic people who are, say, non-verbal, does she feel they are part of the same community? “Yes. And I think we have a duty, as people who can speak, to make sure that those people are looked after properly, and they’re not exploited, and they don’t have inappropriate people speaking for them, or saying things like, ‘He’s got a mental age of three.’ How would they know, if they can’t communicate with them? From what I can observe, they are experiencing the same thing as me. When I’ve seen a non-verbal person have a meltdown, it looks like my meltdowns, only more physical. It looks…” She thinks for a minute. “It looks like an unrestrained version of how I sometimes feel.”
***
In Portsmouth, Jon Adams talks about what many autistic people call “passing”: like Andrews’ pretend interest in Australian soaps and techno pets, it’s about managing to blend in, even if that means submerging whole chunks of your personality. In Adams’ case, passing took its toll and, in his late 30s, he hit an emotional wall. “Not being true to yourself has an effect on you,” he says. “I’d been married, and that had failed. I had a girlfriend at the time, and that was failing. I had a bit of a breakdown, and it took me a couple of years to get used to people.”
He started out on a new path as an artist. The work he does ranges across disciplines including sculpture and music, and regularly touches on his own story. Among his most affecting works is a piece called My School Pen: an old-school fountain pen covered in spikes that perfectly evokes his struggles as a child.
You might have imperfections, but the basics of the way you view the world are right for you
Jon Adams
In 2007, he was working on a project with a group of teenagers for a charity called the Foyer Federation. “The woman in charge said, ‘Have you ever considered you’re autistic?’” he recalls. “I said, ‘No, what’s that?’” She gave him a copy of Mark Haddon’s novel The Curious Incident Of The Dog In The Night-Time, now almost a set text for people interested in the condition. “And I went away and I read one page and I cried.”
He wells up now. “You might have faults and imperfections, but the basics of the way you view the world are right for you. When everybody tells you, ‘No, you’re thinking wrong’, you know you’re not. But if everyone tells you that, you think you’re faulty. That’s the root of the depression and the low self-confidence. So to read those things on a page was emotional. It was visual. I could see that someone understood. And I thought, ‘OK, maybe I am autistic.’” It would be another six years before he was formally diagnosed.
For most adults who receive a diagnosis, the formal recognition might make belated sense of their lives, but it tends to make little difference to their daily existence. According to the National Autistic Society, 70% of adults say they don’t get the help they need. People might just about recognise the condition’s more extreme manifestations, but as Penny Andrews puts it, “They’re probably not aware of the bulk of autistic adults: people who are sitting there, coping with a lot of stuff, and the fact that they’re dealing with all this noise and stress and uncertainty that they shouldn’t have to.”
Joblessness among autistic adults speaks for itself. Even such mundane things as the ubiquity of piped music, or inadequate signage in public spaces, attest to the same basic issue: a society averting its eyes from things that blight hundreds of thousands of lives and might easily be improved. We fetishise “awareness” of autism, but the point needs to be greater understanding – and then practical action.
Simon Baron-Cohen cites one big frustration: if autism comes down to an often profound difficulty navigating the world, only a tiny number of people currently receive the help they need to do that. “Whether it’s about how to go shopping, or how to go for a job interview, or how to reply to your girlfriend. To me, if we were a civilised society, we’d be paying for mentors. It doesn’t seem unreasonable.”
A government programme called Access To Work means that Adams does get help from a support worker called Donna, a calm and empathic woman who accompanies him to our interview. Donna is copied into all his emails, and in the course of Adams’ work as an artist and a researcher into disability and creativity at Portsmouth University, she regularly shadows him for a couple of hours a day. Among other things, her job is partly to assist him in the kind of reading between the lines that professional and social etiquette demands, but that a lot of autistic people find difficult. Very often, she explains, she is there to suggest that a particular request or instruction is put in a different way, or to remind people in authority that Adams has his own ways of working. “You might have a three-week time span to do a piece of work,” Adams explains, “and if your line manager is checking you each day to find out your progress – well, you might not do anything for two weeks: you might be mulling it over in your head.”
Adams talks a lot about “systemising”, the quintessentially autistic way in which he divines patterns in the world, often immersing himself in them. Music is a good example. He has an app called iMini, which he uses to programme sequences of electronic notes into an on-screen keyboard, which he can then use if a spurt of anxiety means he needs to readjust. He plays me a bit, which I say reminds me of the kind of experimental music that came out of Germany in the 1970s. That’s not a coincidence: “I got really into Tangerine Dream in about 1976 – the repeating sequences were heaven for me,” Adams says. He also likes the electronic pioneers Kraftwerk, which rings loud bells. My son is a Kraftwerk obsessive, and regularly zeroes in on particular segments of their songs and plays them over and over. Does that sound familiar?
“Yes,” Adams says, and his mind goes back to 1978. “I bought Mr Blue Sky by ELO. There was a track on the other side, and it had a very strange beginning. It was called Fire On High, and I’d play it over and over and over again.”
Why? “It aligned me. It made me feel that the world was right and everything was together. It felt like it was part of me. It’s like all the stars lining up.”
He smiles. “Things like that give me the feeling I’m meant to be here.”
from https://www.theguardian.com/society/2016/nov/19/autism-diagnosis-late-i…;