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Essay/
Neurodiversity

Photo by Stephen Tamiesie/Gallery Stock

Autism from the inside

Too many depictions of autistic people rely on tired clichés. The neurotypical world needs to take note of our own voices

Katherine May

Photo by Stephen Tamiesie/Gallery Stock

Katherine May

an author of fiction and memoir, and an award-winning blogger. Her books include the novel The Whitstable High Tide Swimming Club (2018), and the memoir The Electricity of Every Living Thing (2018). She lives in Whitstable in Kent.

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3,700 words

Edited by Marina Benjamin

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I found myself at a lunch table recently with a journalist, a sociologist and a business psychologist, which sounds like the set-up for a bad joke. We were discussing Silicon Valley, and its notorious working culture of long hours and company-dictated leisure time. ‘The problem, of course,’ said the sociologist, ‘is that these businesses are institutionally autistic.’

‘I’m autistic,’ I said. ‘Can you explain what you mean by that term?’

A look of slight consternation crossed his face, followed by something very much like annoyance. There I was, being autistic-by-stealth in his company, then having the temerity to question an analysis that he clearly thought rather witty and incisive.

‘I mean,’ he said, a little more carefully, ‘that these companies are run by men who probably have Asperger syndrome.’ A pause. I raise my eyebrows. ‘And so there’s a lack of … emotional understanding.’

It’s hard to imagine any other situation in which a group of educated, liberal adults would conjure a marginalised group as a shorthand for awful. Imagine describing an organisation as institutionally black, institutionally female or institutionally Muslim. Yet, somehow, intelligent people can drop ‘autistic’ into conversation whenever they want to draw a contrast between the unfeeling, insensitive, uncreative parts of this world, and their bright, emotional, magnificent selves.

Asperger syndrome has replaced schizophrenia and bipolar disorder as the weapon of choice for the amateur diagnostician. The problem is not that these comments are snide, divisive and politically incorrect – although they are. Asperger syndrome is in fact an increasingly outmoded term, with both diagnosticians and activists preferring to use the catch-all ‘autism’ now. But it has become synonymous with a folk understanding of ‘high-functioning’ autism that has spread like wildfire in recent years, and which is entirely wrong. That the problem exists at all might even point us to some of the deficits in understanding experienced by nonautistic people.

Perhaps you remember Christopher Boone? He likes prime numbers and mathematical puzzles, but finds metaphors and jokes extremely confusing. His pattern-recognising abilities are extraordinary, although sometimes they tip him over into distress, particularly if he passes four yellow cars in a row while he’s on the bus. His mechanical understanding of the world around him is endearing, but frustrating to those trying to shepherd him towards adult life. Mark Haddon’s novel The Curious Incident of the Dog in the Night-Time (2003) is a kind of ground zero for the contemporary understanding of autism. It was a surprise hit, published simultaneously in editions for adults and for children, and sold a million copies in its first year. Haddon’s unlikely child-hero Christopher (who’s determined to unravel how his neighbour’s dog came to be impaled on a garden fork) was different from his predecessor, Raymond, or ‘Rain Man’ in the eponymous 1988 film starring Dustin Hoffman. Certainly, he had the same flair for maths and patterning, and the same baffled response to the illogical behaviour of people around him. But, unlike Raymond, Christopher was cute. Vulnerable, motherless, laughably ill-equipped for everyday life, he exuded a bewildered charm that made him loveable. He was the ultimate underdog who triumphs because of his unique way of seeing the world, rather than despite it.

The edition that I own, published by Vintage in 2004, still labels his neurodiversity. The back cover reads, ‘Christopher is 15 and has Asperger’s syndrome. He knows a very great deal about maths and very little about human beings. He loves lists, patterns and the truth. He hates the colours yellow and brown and being touched.’ The book’s text has never explicitly diagnosed Christopher with anything other than ‘some behavioural difficulties’. Haddon himself wrote on his blog in July 2009: ‘I slightly regret that the word “Asperger’s” was used on the cover. If anything it’s a novel about difference, about being an outsider, about seeing the world in a surprising and revealing way.’

But why would Haddon regret it? After all, Christopher is part of a lineage of popular characters whose most enticing quality is their extreme logic. In many ways, he is the descendent of Star Trek’s Spock – his autism a similar device to Spock’s Vulcan heritage: it softens and legitimises what could otherwise be a difficult trait to accept, and adds a whiff of the exotic.

Christopher even has his own descendants, notably Don Tillman, the lovelorn but overly analytical protagonist of another multi-million selling novel, The Rosie Project (2013) by Graeme Simsion. Like Curious Incident, The Rosie Project is voiced in a naive first-person, saturated with dramatic irony. Although Don is a successful geneticist, his social skills are comically inept, and his rigidity frustrates his colleagues. He repeatedly needs to be corrected and informed on matters of social nicety over the course of the book, and struggles to see the eponymous Rosie as a suitable mate without careful, exasperated guidance from his friends.

Why this careful striptease, in which autism is revealed by suggestion rather than with directness?

Perhaps Simsion learned from Haddon’s regrets. Don is never called autistic either in the text or the blurb, but he does present a paper on ‘Genetic Precursors to Autism Spectrum Disorders’, and I don’t think we’re supposed to miss the connection. Don’s autism is signalled rather than explicitly labelled, and a brief scroll through the many interviews that Simsion gave at the time of publication shows that this signal was received and understood. Over and again, Simsion is asked whether he intended Don to be autistic. His answer: sort of. In a 2013 Q&A on Penguin South Africa’s website, he says: ‘Don is not a bunch of symptoms – he’s a quirky guy who probably would be diagnosed as being on the autism spectrum – but I don’t claim to be an expert.’ 

It’s not hard to detect a certain tension here, between the publishers’ publicity teams who want to emblazon the books with a buzzword proven to fascinate audiences – Asperger syndrome – and the reticent authors, who clearly do not want to nail their colours to the mast. So why this careful striptease, in which autism is revealed by suggestion rather than with directness? Perhaps some social delicacy is in play, but I’d like to suggest that these writers are being careful where publishers are not because, at some point in the process of bringing their books into the world, they learned that they got it wrong. The trick both these books deploy is to take autism as it’s observed from the outside, by neurotypical people, and to convert these traits into a first-person voice, which supposedly portrays an autistic ‘mind style’.

We could spend a lot of time discussing how this would be a logical fallacy for any authentic attempt at conveying perspective. After all, we can never truly divine the interior state of another, and fiction depends on a series of best-guesses and creative extrapolations that we broadly accept to be satisfying, and even revelatory. However, I’m going to argue that autism should be treated differently, and not just because it’s a distinct way of perceiving the world. Recent research, engaging with autistic people as partners rather than simply observing them, suggests that we have badly misunderstood the interior life of autism – as I will show, these cold, naive characters are nothing more than literary tropes.

When I come across instances of this folk understanding of autism, I am reminded of Edward Said’s 1978 description of the orientalist gaze, in which the exoticised subjects endure a kind of fascinated scrutiny, and are then rendered ‘without depth, in swollen detail’. Never allowed to speak for themselves, their behaviours are itemised, but not actually understood. The observer, meanwhile, is assumed to be neutral, authoritative and wise. This creates a simulacrum of the Orient, packaged for the consumption of the West. If it happened only once, it would barely be a problem; but reproduced endlessly, each skewed representation gives life and context to the next. The literary trope of autism has that same kind of memetic contagion.

Behind this is the assumption that author and reader are both neurotypical. Haddon and Simsion might have withdrawn references to autism in their stories and blurbs, but they continue to represent autism in coded terms, while delegitimising the criticisms made by autistic people. The American author Judith Newman has made this even more explicit. Her memoir of mothering an autistic son, To Siri with Love (2017), triggered waves of outrage from the autistic community, on account of a multitude of condescending and ill-informed remarks, from the author’s mockery of her son’s emergent sexuality to her breezy certainty that he’s a kind of empty vessel. At one point, she wonders aloud whether she should arrange for him to be sterilised. Newman’s response to the criticism was extremely telling. In a 2017 interview with an online magazine, she suggested that her stories were humorous, and that she assumed this meant that autistic people didn’t understand them. ‘This book wasn’t really written for an autistic audience,’ she said.

The qualities assigned to autistic people are the inverse of those that neurotypical society most prizes

And yet the cover of To Siri with Love brims with praise for the author’s emotional intelligence, calling it ‘moving’, ‘touching’, ‘warm’ and ‘wise’, telling us that it ‘will make your heart brim, and then break it’. These are the words of a neurotypical society talking to itself, and praising its own ability to love the strange creature portrayed in this book. Here, we glimpse the space where discussions about autistic people take place: a closed shop, in which we are subjected to intrusive and patronising comment, while being explicitly excluded from the discourse ourselves.

In this anaerobic environment, the qualities routinely assigned to autistic people – lack of empathy, unworldliness, humourlessness, the inability to love – are the exact inverse of the qualities that a neurotypical society most prizes. When a recent production of Mike Heath’s play The Big Things (2018) in London attracted furious protest for portraying an autistic mother as unable to love her child, referring to him as ‘it’, the production company issued a full apology, but nevertheless continued to stage the play. In the closed shop, autistic offence doesn’t yet carry the same mainstream clout as, say, racist or homophobic offence. And so the inaccurate meme of autism is reproduced again.

The Swiss psychiatrist Eugen Bleuler coined the term autism at the beginning of the 20th century to describe how some of his schizophrenic patients tended to detach from interaction. More than 30 years later, Leo Kanner, a physician in Baltimore, began the process of defining autism as a distinct condition, present from infancy, and based on the inability of patients to relate themselves to other people, instead craving ‘aloneness’ and ‘sameness’. Much has been written about autism since, but the abiding impression remains that autistics are disinterested in social contact, and instead fixated on routines and ‘special interests’ that replace human beings in the scope of their attention. Both diagnostic criteria and mainstream definitions of autism reflect this view. The current edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), for example, defines autism spectrum disorder as ‘persistent deficits in social communication and social interaction across multiple contexts’ and ‘restricted, repetitive patterns of behaviour, interests, or activities’, that are ‘present in the early developmental period’ and ‘cause clinically significant impairment in social, occupational, or other important areas of current functioning’.

This bears a little unpicking because encoded in this authoritative language are some problematic assumptions. We should not be surprised to find words such as ‘disorder’, ‘deficit’ and ‘impairment’ in the DSM; it exists to pin down the exactitudes of problems brought to psychologists by patients. What’s striking, though, is the external nature of the criteria: the autistic person is passive here, being observed and judged, rather than explaining her own experiences. Of course, the diagnostic subjects might be very young, or nonverbal – but equally, they might not be. What many autistic people would question is the framing of these descriptions: they appear to favour the offence to the sensibilities of the practitioner over the challenges faced by the autistic subject. They highlight effect over cause. To an autistic eye, the balance is all wrong.

Consider the section on autistic interests, which are called ‘highly restricted’, ‘fixated’, and ‘excessively circumscribed’ in the DSM-5. Here, we are discussing a source of pleasure and joy for autistic people, invariably linked to identity in a profound way. Autistics often describe these interests as bringing about a sense of what the psychologist Mihaly Csikszentmihalyi calls flow: an act of deep concentration, bringing about feelings of clarity, effortlessness and of time slipping away. They also form the basis of many successful careers but they must, apparently, be censured under the hard gaze of clinicians.

The DSM-5 only ever mentions the phenomenon of sensory sensitivity as a subset of the ‘Restricted, repetitive patterns of behaviour’, and yet this, for many autistics, is routinely described as the experience from which many of the observable autistic behaviours derive: the repetitive movements (known as self-stimulatory behaviour or ‘stimming’), withdrawal from social contact, ‘extreme distress at small changes’ and ‘inflexible adherence to routines’ are often responses to being sensorily overwhelmed, and are aimed at managing chaotic environments and bringing about pleasant feelings to counteract unpleasant ones.

They experienced the same levels of pain as nonautistic children, but were half as likely to be given an anaesthetic

To autistic communities, the DSM’s descriptors can feel less like a neutral diagnostic matrix, and more like a colonial narrative. They fail to grasp the challenging aspects of autistic experience, and pathologise the positive ones. The DSM goes on to note ‘apparent indifference to pain’, which might well be true if you judge pain and its responses only in neurotypical terms. Many autistic people experience the sensory sensitivities noted in the DSM-5 as pain, hence the ‘extreme distress’. What’s more, autistics routinely report that they are undermedicated or dismissed when they’re in physical pain, possibly because their facial expressions and vocalisations don’t match what doctors expect to see in the general population. A 2009 study by the psychologist Silvie Tordjman at Paris Descartes University and colleagues monitored the heart-rate of autistic children when blood was drawn, finding that they experienced the same levels of pain as nonautistic children, but were half as likely to be given an anaesthetic.

Perhaps most damaging is the description of autistic social life. ‘Failure of normal back-and-forth conversation’; ‘absence of interest in peers’; ‘reduced sharing of interests, emotions, or affect’. All these terms point to autism as a state of antisocial being, marked out by indifference to others and ineptitude in communication. The influential theory from the developmental psychopathologist Simon Baron-Cohen at the University of Cambridge suggests that this is caused by ‘mindblindness’, or the inability to predict or empathise with the thoughts and feelings of others. This, he says, also leads to a failure to understand ‘the language of the eyes’, thus limiting nonverbal communication.

Here again, we see an external observation of autism, judged against neurotypical norms. Look online, in Facebook groups or under Twitter hashtags such as #actuallyautistic, and you will see social life flourishing – reciprocal, empathetic, intuitive, and ringing with emotion. You’ll find mutual support and jokes; heated debates and silly internet memes. There’s no denying that a lot of the chat centres on the pressures of everyday social life, but there’s also no mistaking that the capacity is there. The priorities are different, that’s all, and there’s a greater understanding of the need to sometimes retreat, process or ask questions. The advent of social media has transformed the ability of autistic people to seek out kindred spirits, control the tone and content of their discourse, and combat the loneliness that so many report. But it also reveals something that many neurotypical people have so far been unable to perceive.

The sociologist Damian Milton at the University of Kent argues that mindblindness goes both ways. If we see social situations as dynamically constructed between the participants, rather than defined by static, universal rules, it is impossible for one person to have a social ‘deficit’; the failure lies in the mutual creation of a social reality. Therefore, when communication fails between autistic and nonautistic people, we must surely consider whether the mindblindness is mutual. Milton calls this the ‘double empathy problem’: neither party is able to interpret the gestures, tone or pace of the other’s conversation, and so both participants leave with a sense of ‘otherness’. However, because autistic people are in a minority, in mainstream discourse – including the language of respected tomes such as the DSM – neurotypical mindblindness is invisible.

For a moment, let’s flip things over. To an autistic viewer like me, neurotypical life can seem astonishingly unemotional. I’m so overwhelmed by the sensory onslaught of a busy room that I’m almost tearful, while neurotypical folk appear to wade through clouds of sound, light and odour, entirely oblivious. It’s hard to resist the impression that they’re numb, or unreal somehow. They are certainly displaying a lack of affect in the face of extreme provocation. Where I am in constant movement; they are somehow still. During a networking event, I once became so agonised by the itchy label in the back of my dress that I reached behind to pull at it, and felt the fabric tear. I withdrew my hand, ashamed. I had let my mask slip.

I do not spend my time wondering, naively, what’s going on, or questioning the exact, literal meaning of everything neurotypical people say, but, distracted, I lose my words sometimes, or muddle them, or slur. Or else I go into a kind of overdrive, and pour out a barrage of speech that might not be measured, or appropriate, or relevant. As an adult, I have mostly learned to moderate this, but it’s not always effective. Either way – without words, or with too many of them – I see that discreet look that passes between neurotypical people when they’ve decided that you’re odd.

From my end of the conversation, the constant chatter seems colourless and dry. Instead of discussing their driving passions, my companions prefer to gossip about near-strangers, or to compete for airtime at the expense of listening and perhaps learning something useful. They are endlessly obsessed with their status and their identification with their tribe. As the conversation moves on to current affairs, people stumble over themselves to agree with the most influential person at the table. They seem able to assimilate news stories that I find too tragic to digest, and to flip them glibly into humour, finding glee in the kind of interpersonal politics that make the air feel thick to me. To me, their company seems superficial, blunt, emotionless.

Be more critical when faced with stereotyped autistic characters, as with other minority groups now

If this seems like a terrible generalisation to you, based on a flawed understanding of someone else’s way of perceiving the world, then you’re beginning to get the point. I write these things about neurotypical people knowing that they are not true, because the culture that I’m immersed in tells me so. I am taught by books, films and TV that people have hidden depths, that their reactions do not always portray exactly what they’re feeling; I understand that people’s behaviour can be influenced by a whole range of factors that I know nothing about, and that I should not assume that they are ignorant, or stupid, or defective just because their responses do not match mine. What I ask is that the same courtesy is shown to autistics.

I’m not arguing that neurotypical writers should never create autistic characters (that would lead to even greater invisibility than we have at the moment). I’m suggesting that it’s time those characters reflected reality, based on careful research, and contact with real, autistic people. In the course of that research, writers might come across the occasional Don or Christopher, but they’ll also find far more diversity than they ever imagined; people brimming with creativity, empathy, wisdom and good humour; and people facing physical, sensory and intellectual challenges far greater than fiction has portrayed. The psychiatric literature is playing catch-up here, to the extent that it’s not a useful source of reference.

Readers, too, need to be more critical when faced with stereotyped autistic characters – as they now are with a range of other minority representations. When encountering characters from vulnerable or minority groups, we must all learn to ask who is doing the writing, why, and on what authority. It is time to grow tired of ‘folklore autism’ being used to jazz up a tired book, and to seek out the freshness and life of authentic accounts, written by autistics. I’m delighted to say that my own memoir, The Electricity of Every Living Thing (2017), recently landed on a pile of other wonderful books by autistic authors, including The Reason I Jump (2007) by Naoki Higashida, The State of Grace (2017) by Rachael Lucas, Odd Girl Out (2017) by Laura James and The Autistic Alice (2017) by Joanne Limburg, but it’s fair to say that as a group we have not yet reached the kind of critical mass that would make autism better understood, not least among clinicians.

After all, I write here as someone who was diagnosed only at 38, having never recognised myself in anything I’d seen before, despite having read Curious Incident and The Rosie Project, and despite having watched Rain Man. It is not enough to create lovable characters and hang them with a borrowed label of autism. It is time to create accurate ones instead.

Katherine May

an author of fiction and memoir, and an award-winning blogger. Her books include the novel The Whitstable High Tide Swimming Club (2018), and the memoir The Electricity of Every Living Thing (2018). She lives in Whitstable in Kent.

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