Friday, July 14, 2017

Naoki Higashida's Communication

David Mitchell: almost everything I’d been told about my son’s autism was wrong


The New Statesman  by David Mitchell  July 8, 2017

Naoki Higashida is an amiable and thoughtful young man in his early twenties 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 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. Internet trails led to The Reason I Jump, written when its author was only 13. Our bookshelves were bending under weighty tomes by autism specialists and autism memoirs, 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.


Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

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, fixations, 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-a-million 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 and (more recently) Ido Kedar and Tito Mukhopadhyay. 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 regrettable errors that could serve as chapter headings in the history of autism.

Leo Kanner, the pioneering 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 public credibility now is on a par with demonic possession, but which maintains some currency in France, South Korea and among an older generation of tenured experts. The 1960s and 1970s saw eminent 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, as well as on parents like me and my wife, I don’t feel like being particularly fair.

The crux of the matter: what if the current mainstream assumption that people with severe autism have matching severe intellectual disabilities is our own decade’s big, bad 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 autisms and behaviours, 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 dropped object, instead of thinking, “Oh, why bother?” and doing it for him. We got craftier at discerning his unexpressed wishes rather than assuming his wishes were non-existent.

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 inspired and 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 both 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 critical and commercial success of Naoki’s book. My involvement in the promotion of The Reason I Jump, 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. While The Reason I Jump enjoyed a positive reception, an accusation was levelled that nobody with “genuine” severe autism could possibly have authored such articulate prose: never mind the YouTube clips showing Naoki authoring this same 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, akin to the character Sheldon Cooper in The Big Bang Theory; 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”. (The subtext I can’t help but see here is, “These desperate parents won’t face the fact their son is a vegetable so their objectivity is compromised.”) 

My most instructive experience of all was being 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. As my own prickly response to the New York Times review shows, the skin of parents whose kids have special needs is membrane-thin and packed with nerves.

However, our compass should surely be the question, “What is best for the well-being and life chances of our sons and daughters?” Ultimately, I believe that while severe non-verbal autism does indeed look 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 paradigm shift towards a truer understanding of the condition.

Naoki published a number of books in Japan after The Reason I Jump, but it was Fall Down 7 Times, Get Up 8 that my wife and I found to be the most illuminating. A person’s autism doesn’t conveniently peter out at a certain age, nor does it stop evolving. Our son is now 11 and we’ve already found this volume to be a useful source of insight into how adolescence can impact upon autism, as well as an indication of what to expect further ahead. Most of its short chapters were written by Naoki for his blog between the ages of 18 and 22, though he often analyses his younger self from his more mature perspective. If The Reason I Jump was a text by a boy who had severe autism but who happened to be able to write, Fall Down 7 Times, Get Up 8 – its title borrowed from a Japanese proverb about the merits of persistence – is a book by a writer who happens to have severe autism. Autism is still Naoki’s prism and lens, but the chapters add up to a kind of collage-portrait of a young man learning to coexist with a mind and body not always at his beck and call, and carving out a niche for himself in the neurotypical world.

Autism has a habit of making clean labels like “verbal” and “non-verbal” murky. With neuro-atypical people, communicative ability exists on a spectrum and not in a binary yes/no position. Whenever I’m asked, “Is your son verbal or not?” in order to reply fully I have to explain that while his 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. I cannot know for sure whether he understands none, some or all of a conversation between third parties. Compared to some of his peers who have never uttered a word in their lives and, indeed, compared to Naoki, my son is rather verbal: but relative to his neurotypical contemporaries, he’s a step away from muteness.

***
The label “non-verbal” as applied to Naoki also requires some explanation. He 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 country 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. Environmental factors come into play: Naoki seemed to be able to focus on his alphabet better sitting across from me at a desk, while his mind wandered more when sitting on a low sofa for the benefit of a TV camera. 

One’s position on the verbal-non-verbal spectrum can fluctuate according to mood and stress and shift in the long term. 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 officially 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?

An accurate answer isn’t straightforward. I accept that we need words for degrees of disability, but I’ve developed allergies to the current terminology of “severe” v “mild” (redolent of colds and curries), or “high-functioning” v “low-functioning” (Star Trek’s Commander Data v a 1980s home computer). Not long ago I met up with an old acquaintance whom I hadn’t seen since my son was diagnosed, who said – with the air of one who doesn’t waste time beating about the bush – “So, I understand your son’s severely autistic?” Apart from feeling a bit stung, I felt stumped by the paucity of the question.

The severity of my son’s autism varies wildly from aspect to aspect – communicative, behavioural, self-management, sensory processing, gross and fine motor control. Other variables are mood, tiredness and even the time of year (watch out for November, after the clocks have been turned back an hour). Shorter answers to the question “How autistic is he or she?” are blunt and reductive, yet their ramifications – in education, in the provision of disability allowance – can be life altering.

As I explained all this to my acquaintance, I wished that autism could be calibrated in terms of ink-cartridge colours, with yellow at the Asperger’s end, magenta at the harder-core pole and cyan in the middle, as in: “Well, his autism’s functionally fairly cyan, but if people are telling him, ‘No!’ all the time it can get splotchy with magenta. Mind you, when he’s writing words on his Magna Doodle or kicking ass at Temple Run on his iPad his autism glows canary yellow.” 

The translators hope that Fall Down 7 Times, Get Up 8 will find a place in the growing corpus of “autism-witness” texts that inform the public, help to dispel myths and misconceptions past their expiry dates, promote the cause of neurodiversity and encourage people to think twice before using the word “autistic” when they mean “anal” or “uptight”. Autism is a fact of our world, which shapes the lives of millions. We cannot change this fact, but we can change our attitudes. 

“Fall Down 7 Times Get Up 8: a Young Man’s Voice from the Silence of Autism” by Naoki Higashida, introduced by David Mitchell and translated by Mitchell and K A Yoshida, is published by Sceptre

No comments: