Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism, Page 2

  My most instructive experience of all was being told point-blank by a fellow contributor to a radio program 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, but that day I found myself in one of those no-win situations where protestations of probity only persuade your accusers that there’s no smoke without fire. 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, self-sacrificing mom or dad would sign up for that? An impulse to shoot the messenger is understandable. 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 nonverbal autism does indeed look like a severe cognitive impairment, the truth is 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. (The historical analogy is deafness, which from Aristotle’s era until the advent of sign language in the nineteenth century was also thought to be indicative of a severe cognitive impairment—hence the synonym for stupid, “dumb.”) 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 nonverbal autism pioneers may be flagging up the next paradigm shift toward a truer understanding of the condition.

  Naoki published a number of books in Japan after The Reason I Jump, but it was this present volume, Fall Down 7 Times Get Up 8, published in 2015, that my wife and I found to be the most illuminating and helpful. A person’s autism doesn’t conveniently peter out at a certain age, nor does it stop evolving. Our son is now eleven 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 eighteen and twenty-two, though he often analyzes his younger self from his more mature perspective. So we hope this new book will be of practical help for other “autism insiders” with both young and older teenagers on their hands. For general readers, we hope the book will offer another opportunity to slip into an autistically wired brain. Its range of topics is more diverse and magpie-like than The Reason I Jump, and showcases its author’s growth and engagement with the world. 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 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.

  The inclusion of a short story, A Journey, inspired by one of Naoki’s grandparents’ experience of dementia, represents a deeper hollowing-out of this niche. The first-person narrative is powered by a gradual reveal, emotional twists and a dreamlike strangeness, and refutes the received wisdom that people with autism can’t emote, feel emotion or see the world from other people’s points of view. Nor does it lack metaphors. Also included is an interview (in two parts) from the Japanese edition of The Big Issue, a magazine sold by homeless people and the long-term unemployed. Naoki was a regular contributor to the magazine, and the quirkier than usual questions—provided by the magazine’s vendors and staff—prompted Naoki to consider some topics he hasn’t addressed elsewhere.

  The title Fall Down 7 Times Get Up 8 is borrowed from a Japanese proverb about the merits of persistence, and the book offers experience, advice and hope. Its pages map the limits placed by nonverbal autism upon its author’s life, but also describe how Naoki has been able to transcend, renegotiate or just learn to live with those same limits. The book shows how a disability can be turned into a field of endeavor and the pursuit of a purposeful life. If this is possible for Naoki, it may be possible for others, too.

  Autism has a habit of making clean labels like “verbal” and “nonverbal” 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. If I could be sure, it wouldn’t be autism we were dealing with (and if I had £10 for every time I’ve said that last phrase, I could buy a mid-range family car). Autism is a relative thing as well as label-resistant. 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 “nonverbal” as applied to Naoki also requires some explanation. He has a near total inability to conduct a spoken conversation, and a near total inability to 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—an “itte-kimasu!” when you leave the house, a “tadaima!” when you get home, to cite two of Naoki’s examples in this book. Another word he uses is 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 more deeply rooted: during most of a twenty-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 one of the chapters here, Naoki would love to stop being a slave to these verbal overrides, but the fixation is insurmountable.) In his book Ido in Autismland, Ido Kedar—another “nonverbal autism text-communicator”—memorably notes that resisting a fixation is as difficult as stopping yourself from vomiting. Naoki’s verbal comprehension, however, is comparable to a neurotypical adult native Japanese speaker’s. In general he understands my less-than-fluent spoken language, 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’s public presentations consist of him reading a prepared text aloud to an audience. This he can manage, with effort, though the strain often heightens the pitch of his voice. If all goes well he can conduct an after-session Q&A, where questions are asked orally and answers given via the 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-nonverbal spectrum can fluctuate according to mood and stress, and shift in the long term. Naoki has only ever answe
red 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 case-specific and relative as the label “nonverbal.” My own son is free from many of the classical 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” versus “mild” (redolent of colds and curries) or “high-functioning” versus “low-functioning” (Commander Data from Star Trek versus 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 around 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, behavioral, 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 autistic severity and mildness could be calibrated in terms of ink-cartridge colors, 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.” That works for me; if it works for you, pass it on.

  To conclude: 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 expiration 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.

  A Note on the English Edition

  This edition of Fall Down 7 Times Get Up 8 is supplemented by three chapters from Naoki Higashida’s 2013 book Aru ga mama ni jiheisho desu and several new chapters written in response to questions from the translators between 2014 and 2016. The author has also revised or expanded a few chapters, and approved the resequencing of the original text into eight thematic sections. The story—A Journey—was written in 2015 for inclusion in this edition. The interview from the Japanese edition of The Big Issue, a magazine focusing on social issues and sold by homeless people in ten countries, dates from the same year.

  There are children who cannot say “Thanks for everything, Mom.” There may be mothers who are saddened by this, and there may be mothers who feel a kind of grief over never receiving a bunch of carnations on Mother’s Day. I’ll never truly experience the sorrow these mothers are feeling, I’m afraid, but I do know exactly what those children who can’t express their gratitude are going through. Mother’s Day is supposed to be the time of year when we show our appreciation for everything our mothers, who we love, do for us. In my case, however, I’m unable to utter even a simple “thank you.” It’s wretched and it’s miserable. I’m sure that if a nonverbal person like me could speak fluently all of a sudden, the very first words he or she would utter would be, “Thanks so much for everything, Mom.” Please remember: there are young people, like me, who dream of a day in the future when we too can say these few words.

  A sudden shower arrived out of nowhere. As soon as Mum heard the sound of rain she cried, “It’s raining!” and dashed upstairs to the balcony to gather in the washing without looking out of the window. I just watched her, no doubt seeming a bit vacant. What follows is a chronology of what went on inside my head as this scene unfolded:

  1) A million pitter-patter-pitter-patter sounds.

  2) I wonder, What could that noise be?

  3) Mom cries, “It’s raining!” Then the noise must be rain.

  4) So I look out of the window…

  5)…and watch the rain, mesmerized; yet as I watch now, I hear nothing; it’s like a close-up scene of rain in a silent movie.

  6) Only now does the sound of the rain start to register.

  7) I seek to connect the concept “rain” to its sound; I search for common aspects between all the downpours in my memory and the rain now hammering down outside.

  8) Upon finding common aspects, I feel relief and reassurance.

  9) I wonder, How come it’s raining now? It was clear earlier.

  10) Up to this point, my mother hadn’t crossed my mind. Now she comes downstairs, saying, “That shower was on us all of a sudden, wasn’t it?”

  11) I recall Mom running to the balcony to save the laundry.

  12) How could she realize so quickly that it was raining?

  If I couldn’t communicate via my alphabet grid, my questions would go unanswered and I’d be sad to my core about how little I understood. As it is, I was able to consult my mother about how she identified the rain by the sound alone. She told me: “Well, because that sound’s the sound of rain and when it starts raining, we bring in the washing. The weather forecast was saying it might rain today, remember?” I did recall the weather forecast, although to have done so of my own volition would have been impossible. As I remembered the relevant section of the report, the forecaster’s words returned and I understood a little more clearly why the rain appeared from nowhere, which eased my confusion and frustration.

  What remains a mystery is how to infer that it’s raining purely from the noise. To me, the sound of rain is an abstract. Identifying the voices of my family or the trill of a phone, the barking of dogs or meowing of cats, these are relatively easy. Some sounds, however, take me forever to figure out, like the chirruping of cicadas at the start of summer. I sense that I’ve heard these sounds before but without further clues their origins remain obscure. Even if I could identify the source of rain-noise, making the jump from the thought It’s raining! to bringing in the laundry would be virtually out of the question. I’d be too occupied just sitting there, entranced.

  Rain is a special case. I have certain memories within which rain has left a lasting impression. When I see rain, bitter incidents I have come to associate with it come back to haunt me. Fun things must have happened on rainy days as well, yet somehow it’s only the sad scenes which summon themselves up. I have to put a lot of effort into distinguishing “memory rain” from real rain if I want to avoid triggering bad flashbacks. To do so, my mind tends to give first priority to organizing my memories ahead of thinking about what actions I need to take right at this moment. All these transactions are a part of what I need to factor in as I work toward behaving like a neurotypical person.

  It was when I was trying to close an umbrella that had been drying out that I ran into trouble. One of its two snap-fasteners wouldn’t snap shut. Normally it clicks into place in no time at all, so I felt a surge of annoyance and managed to call out, “Mom, to come!” I asked her to close up the umbrella—but my mother couldn’t do it either. She peered at the fastener and said, “Ah, it’s gone all
rusty—that’s why it won’t snap shut.” Being unable to do what I normally can—even very trivial things—is a big deal for me, in a bad way. So I just handed the umbrella back to Mom—that was my way of asking her to try again. This time she showed me how corroded the little fastener thing was, and said, “See? It’s all rusted up. There’s no way this umbrella can be closed now.” Once upon a time, even with this clear explanation, I might have lost it completely and gone to pieces. By this point, however, I was able to accept the situation and give up on trying to close the umbrella.

  None of the above was due to greater patience leading to stronger powers of endurance. Rather, I think that my brain, upon fully grasping the cause of a problem, was able to say to itself, It’s okay, that’s impossible to fix, you can move on now.

  On the whole I feel I’ve always understood the causes of the obstacles I’ve run up against, but my emotions could still be quite inflammable. It helps me very much that whenever a new issue arises my mother gives short, positive, clear guidance and instructions. People with autism might need more time, but as we grow there are countless things that we can learn how to do, so even if you can’t see your efforts bear fruit, please don’t quit. Our lives are still ahead of us. Some kinds of success can be won by, and only by, sheer effort and sweat. We all have to bear in mind that adulthood lasts a lot longer than childhood. This is what I’ve been constantly reminding myself.

  One winter day my mother was surprised to find me shivering with cold after I’d just had a bath. She told me, “You ought to make your bath warmer, you know.” The thing is, I really love water, and whenever I get into the bath, I just can’t help turning on the cold tap and letting the water run. I don’t really notice my body cooling down. When the temperature of the bath is down to roughly that of an indoor swimming pool, my body feels as if it is one with the water itself. I feel like I’m a fish or some aquatic creature who has dwelt in the water for aeons.