Is most of what we’re told about autism wrong?

The novelist David Mitchell has a son with severe, non-verbal autism. He was told his child was intellectually disabled. Then Mitchell read, and helped translate, a first-person account of the condition, The Reason I Jump, written by a 13-year-old Japanes

Naoki Higashida is an amiable and thoughtful young man in his early 20s who lives with his family in Chiba, a prefecture adjacent to Tokyo. Naoki has autism of a type labelled severe and non-verbal, so a free-flowing conversation of the kind that facilitates the lives of most of us is impossible for him. By dint of training and patience, however, he has learned to communicate by “typing out” sentences on an alphabet grid – a keyboard layout drawn on card with an added “YES”, “NO” and “FINISHED”. Naoki voices the phonetic characters of the Japanese hiragana alphabet as he touches the corresponding Roman letters and builds up sentences, which a transcriber takes down. (Nobody else’s hand is near Naoki’s during this process.)

If you think this sounds like an arduous way to get your meaning across, you’re right, it is; in addition, Naoki’s autism bombards him with distractions and prompts him to get up mid-sentence, pace the room and gaze out of the window. He is easily ejected from his train of thought and forced to begin the sentence again. I’ve watched Naoki produce a complex sentence within 60 seconds, but I’ve also seen him take 20 minutes to complete a line of just a few words. By writing on a laptop, Naoki can dispense with the human transcriber, but the screen and the text converter (the drop-down menus required for writing Japanese) add a new layer of distraction.

I met Naoki’s writing before I met Naoki. My son has autism and my wife is from Japan, so when our boy was very young and his autism at its most grimly challenging, my wife searched online for books in her native language that might offer practical insight into what we were trying (and often failing) to deal with. That led to The Reason I Jump, written when its author was only 13. Our bookshelves were bending under weighty tomes by autism specialists, but few were of much “hands-on” help with our non-verbal, regularly distressed five-year-old.

When the book arrived, my wife began translating chunks of it out loud at our kitchen table, and many of its very short chapters shed immediate light on our son’s issues: why he banged his head on the floor; why there were phases when his clothes seemed unendurably uncomfortable; why he would be seized by fits of laughter, or fury, or tears, even when nothing obvious had happened to provoke these reactions. Theories I’d read previously were speculations, but The Reason I Jump offered plausible explanations directly from the alphabet grid of an insider. Illumination can mortify – I realised how poorly I’d understood

my son’s autism – but a little mortification never hurt anyone. On Youtube I found a few clips of Naoki and was taken aback at how visibly manifest his autism was – more so than my own son’s. This gap between Naoki’s appearance and his textual expressiveness made a deep impression. Clearly, he struggled with meltdowns, physical and verbal tics that not so long ago would have ensured a short, bleak life of incarceration. Yet in The Reason I Jump, the same boy was exhibiting intelligence, creativity, analysis, empathy and an emotional range as wide as my own. What intrigued me as much as anything was that these last two attributes – empathy and emotional range – are precisely what people with autism are famous for lacking. What was going on? There were two possibilities: either Naoki Higashida is a one-in-amillion person, who has severe non-verbal autism yet is also intellectually and emotionally intact; or society at large and many specialists are partly or wholly wrong about autism.

Evidence against the “uniqueness possibility” came in the form of other non-verbal writers with severe autism, such as Carly Fleischmann. Naoki’s ability to communicate might be rare but it’s not one in a million. The “wrong about autism” theory is bolstered by the errors that could serve as chapter headings in the history of autism. Leo Kanner, the child psychiatrist who first used the word “autism” in the 1940s in a context distinct from schizophrenia, blamed the condition in part on “refrigerator mothers”, a notion whose credibility now is on a par with demonic possession. The 1960s and 1970s saw psychiatrists advocating autism “cures” based on electrotherapy, LSD and behavioural change techniques that utilised pain and punishment.

I understand that science progresses over the bodies of debunked theories, and I know that judging well-intentioned psychiatrists from the higher ground of hindsight isn’t particularly fair, but when I consider the damage they surely inflicted on children like my son, I don’t feel like being particularly fair. What if the current assumption that people with severe autism have matching severe intellectual disabilities is our own decade’s wrongness about autism? What if Naoki’s conviction that we are mistaking communicative non-functionality for mental non-functionality is on the money?

My wife and I saw no harm in “assuming the best” and acting as if, inside the chaotic swirl of our son’s autism and behaviours,

“Naoki’s autism is classified as ‘severe’. Yet in his book, he exhibits intelligence, empathy and an emotional range as wide as my own”

there was a bright and perceptive – if grievously isolated – five-year-old. We stopped assuming that because he’d never uttered a word in his life, he couldn’t understand us. We put morsels of food he didn’t eat on the edge of his plate of pasta, like Naoki suggests, in case he was feeling experimental that day. Often he wasn’t, but sometimes he was, and his food repertoire grew. We started asking our son to pick things up that he’d dropped by taking his hand to the object, instead of thinking, “Oh, why bother?” and doing it for him. We began speaking to him normally, rather than sticking to one-word sentences. I didn’t know what percentage of these longer, more natural sentences our son understood – I still don’t – but I do know that our daily lives got better. His eye contact improved, he engaged with us more and, with help from an inspiring tutor, our son came into the kitchen one day and almost made me fall off my chair by asking, “Can I have orange juice please?” His vocabulary snowballed and episodes of self-harm dwindled away to near zero.

Autism is not a disease, so there are no “cures” – never give your credit card details to anyone who tells you otherwise. But The Reason I Jump did help us understand our son’s challenges and the world from his point of view more than any other source. Initially, my wife and I translated the book for our son’s special needs assistants; now it has been published in more than 30 languages. To the best of my knowledge, this makes Naoki Higashida the most widely translated living Japanese author after Haruki Murakami.

I was surprised and pleased by the success of Naoki’s book. My involvement in it, however, gave me a crash course in the politics of special needs. Entrenched opinion is well armed, and its default reaction to new ideas is often hostile. The accusation was levelled that nobody with “genuine” severe autism could possibly have authored such articulate prose. Therefore, Naoki must have been misdiagnosed and doesn’t have autism at all; or he’s an impostor at the Asperger’s syndrome end of the spectrum; or his books are written by someone else, possibly his mother. Or me. The New York Times reviewer cautioned the translators against “turning what we find into what we want”.

I was told point-blank by a fellow contributor to a radio programme that The Reason I Jump couldn’t be genuine because Naoki employs metaphor, and people with severe autism can’t understand what a metaphor is, let alone create one. In fact, I’ve watched Naoki spell out similes and metaphors on his alphabet grid on a number of occasions. My co-contributor’s son also had severe autism, and I’ve tried hard to understand her indignation. To be told that we’ve been underestimating our child’s potential can feel like we’re being accused of collaborating in our child’s imprisonment, and what loving mum or dad would sign up for that? Shooting the messenger is a less messy reaction.

However, I do believe that while severe non-verbal autism looks like a severe cognitive impairment, the truth is that it’s not: it’s a severe sensory-processing and communicative impairment. These words hold a world of difference. To deny that a severely autistic brain may house a mind as curious and imaginative as anyone else’s is to perpetuate a ruinous falsehood. If a critical mass of people hadn’t called time on previous “truths” about autism, the refrigerator mother theory – or even the demonic possession theory – would still be reigning supreme. Naoki and other pioneers may be flagging up the next shift towards a truer understanding of the condition. Autism has a habit of making clean labels such as “verbal” and “non-verbal” murky. While my son’s comprehension appears to be good and he can name many hundreds of objects in English and Japanese, his spoken communication is limited to a few phrases, and he’s never had a conversation longer than three or four exchanges of these phrases. Compared with some of his peers who have never uttered a word and, indeed, compared with Naoki, my son is rather verbal: but relative to his neurotypical contemporaries, he’s a step away from muteness.

Naoki, meanwhile, has a near-total inability to conduct a spoken conversation or give verbal answers to questions. He is better able to deploy the short menu of set phrases drilled into Japanese children and used throughout their lives – such as the universal pre-meal expression of gratitude “itadakimasu”, though this has morphed into a fixation whereby he has to check that every other diner in the room has also said it. (Problematic at large gatherings.) If Naoki’s mother uses her ordinary voice when she calls out his name to check where he is in the house, Naoki is unable to respond. If she uses his full name in the formal manner of a schoolteacher taking the class register, however, Naoki can confirm his presence verbally.

He can also say – or, more accurately, is compelled to repeat – words or short phrases that have embedded themselves in his mind. These might be advertising jingles, place names or words that catch his fancy. Verbal fixations are deeply rooted: during most of a 20-minute drive along slowish winding Irish lanes, Naoki repeated the Japanese word for “expressway” in order to prompt his mother into replying with the sentence: “No, it’s an ordinary road.” (As he explains in the book, Naoki would love to stop being a slave to these verbal overrides, but the fixation is insurmountable.)

Naoki’s verbal comprehension, however, is comparable to a neurotypical adult. In general he understands my less-than-fluent spoken Japanese, but because he’s unable to let me know that he has understood, I can be left dangling until he begins to spell out his answer letter by letter on his alphabet grid. Naoki has only ever answered one of my questions aloud, without using his alphabet grid. We were at lunch. His answer was a simple “Yes” and the whole table smiled in surprise at this achievement, Naoki included. (I’m embarrassed to admit I’ve forgotten the question.)

Naoki’s autism is classified as “severe” by the Japanese authorities and he carries an ID card bearing this designation in case a swift explanation is needed. What the designation “severe” involves, however, is as relative as the label “non-verbal”. My son is free from many of the classic autistic “tics” that Naoki is burdened with, and over short periods he can even pass as neurotypical. In contrast, ten seconds in Naoki’s company is enough for his autism to become unmistakable. My son, however, shows no sign – yet – of being able to communicate the richness of his inner life in the way that Naoki can. Whose autism is more severe?

Naoki Higashida’s follow-up book, Fall Down 7 Times Get Up 8: A Young Man’s Voice from the Silence of Autism, about his experiences, thoughts and feelings as a young adult with autism, is published by Sceptre. It has an introduction by David Mitchell, and is translated by Mitchell and K.A. Yoshida. A longer version of this article first appeared in the New Statesman.

“What loving parent wants to be told we’ve been underestimating our child’s potential? Shooting the messenger is less messy”