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

by Naoki Higashida

  Whenever I have to select something, my mind kind of goes blank. When I’m instructed to “pick something,” the urgency of having to do so throws me into a tailspin. If I’m told, “Come on, choose one of them!” then the only thing that matters is that I have to choose one, right now. I guess for neurotypical people there is pleasure to be found in making a choice, but this is not a luxury that I can enjoy. However, since I’ve learned to communicate my thoughts and wishes to some degree by writing on palms or via my grid, I am at least able to reset my decision if I make a wrong choice. I’m also better able to consider why I went for the option I didn’t want, work out which one I should have chosen, and let people around me know which option is the right one for me, after all.

  To those of you who live, work or deal with people who have nonverbal autism, I recommend switching the order of the items on offer and sidestepping the “triggers” of fixed responses. This will help you ascertain which option the person with autism genuinely wants. It’s also crucial that people who work with us steer clear of bias and preconceived notions about our choices and don’t fall into the trap of thinking, this one here is the one he needs! Remember that the very same person can vary his or her choice depending on how they feel that day, and that our preferences can change with the seasons, or as we just get older.

  Finally, please be mindful that, with the best will in the world, while you are intending to give us a free choice, you might inadvertently be swaying us one way or the other.

  When you were small, I’m sure you were often asked, “And what would you like to be when you grow up?” This question is rarely put to children with disabilities. Not, I think, because people don’t expect the child to understand, but because they assume it to be the parent’s or therapist’s responsibility to map out the child’s future, not the child’s. To my mind, however, it’s vital for any child to be able to dream about who and what they’d like to be and do in their future. The answer doesn’t have to involve a profession—more than any answer, it’s the act of imagining that really counts. Tomorrow might be indistinguishable from yesterday, but on the far side of tomorrow the whole of our future is waiting, and it’s our present selves who dream that future into being. So please, next time, go ahead and ask children with special needs what they’d like to be in the future. By asking, you’re enabling them to look forward to it with pleasure.

  PART 2: N TO Z

  N: If a replacement word for autism—jiheisho—were to be coined, what would you like it to be?

  I can understand why some people would like jiheisho—“self-locked-up disease”—to be changed, but personally speaking, I can live with the word. Changing the name of a disability would take a vast amount of energy and I’d prefer it if these resources were applied to making our society a more autism-friendly place.

  O: How would you define “being independent”?

  The knowledge that I am a valid member of society, in a financial sense as well as a social one.

  P: We’re the same age, you and me. What do you think of our generation of young people?

  A person isn’t of more or less interest to me just because we’re of the same generation. The same applies to a person’s thoughts. All the way down human history it seems that older generations have grumbled about younger ones being impossible to understand. Young people, myself included, are products of the society we belong to. What I’m curious about is how other generations perceive ours.

  Q: What we think, what we like and what we believe varies widely from person to person. How do you suggest people with so many diverse ideas can live harmoniously?

  People shouldn’t think they have to be friends with others, but if they can acknowledge each other’s cultures, and respect each other as valid human beings, this is enough, I think. Because we try to build friendly relations with others, we expect them to understand us. Our interest can end up with us trying to know more about them than is required or tactful. Religions and ways of life are ingrained into us from the beginning. In the end, we might try to force ideas onto each other. Coexisting as we do matters most.

  R: More’s the pity, there are calculating, hurtful people in the world, but I like to believe they were born kind and good. How do you think their original gentler selves can be restored?

  I don’t think that anyone’s born kind or good. What we become is learned and formed later, and only if a person wishes to be compassionate can he or she become compassionate. Perhaps those same calculating, hurtful people might show kindness toward those who are precious to them. All we can do is to offer help to any tricked or damaged victims.

  S: You wrote some poems about war. What kind of society would you like to see in the future?

  I’m sure everyone would like to see an end to war. Fighting solves nothing: all we end up with are winners and losers. Despite the truth of this, why people never stop waging wars is something I’ll always wonder about.

  T: Do you still feel an affinity with the wind, “dissolve” into sunlight or listen to flowers or trees? Can I do it too?

  Unfortunately, I’m less connected to nature than I used to be. If asked whether I miss that affinity, I’d say yes, I do. However, I’ve grown fonder of myself as a human being, so maybe it’s for the best. After all, a person can’t really live as the wind—but at least we can listen to its voice.

  U: You’ve said, “To me, human beings aren’t attractive.” If you could be reincarnated as something else, what would it be?

  There are so many things I’d like to be, it’s difficult to choose one! But for now, I’ll say a cat. There’s no obvious reason why, but I suspect that I’d have a lot more freedom as a cat.

  V: What does “God” mean to you?

  I don’t believe in one specific religion but I acknowledge the existence of God as a superlative entity beyond words.

  W: What kind of books do you read?

  The books I usually read are the picture books I’ve been reading since I was a boy, though the writer who has influenced me most is Kenji Miyazawa. Of the stories my mother read me back then, his Night on the Galactic Railroad moved me the most.

  X: What are words for you? Do you have a favorite?

  For me, words are bridges that connect me with others. It’s impossible for me to make myself understood facially or visually. The letter that is special to me is [pronounced “no” as in “not”] because of its beautiful curve. My favorite word is [kibou; pronounced “key-bor”]—hope.

  Y: Last year you were invited to the U.S. to give a presentation. What made the biggest impression on you? Would you like to visit any other countries?

  What impressed me most in the U.S. was their understanding about autism. It’s much more advanced there. Even at a museum, a guard allowed me to follow a fixation without forcing me to obey the rules that other visitors had to. Thanks to the goodwill of Americans I met, I could travel without suffering any major panic attacks. If the chance comes along, I’d love to visit Europe one day.

  Z: You’ve written poems, essays, children’s books, fables and picture books. Do your thoughts and feelings change depending on what you’re writing? How did you learn to write such elegant, precise and flowing sentences that touch your readers so gently? What kind of techniques and practices do you employ?

  Whatever form I write in, my thoughts and feelings are the same. I just hope that my writing finds a readership. If I can make any kind of impression upon my readers, then as a writer I’ll feel honored. What I pay attention to while I’m writing is not to overexplain things; and to write those things that I, and only I, can write. These two objectives may look easy, but in fact they are both highly demanding tasks. My ideal is that a single sentence I write can evoke many and varied images in the mind of the reader.

  When I was a small boy, I used to stop at a certain gate whenever we passed by it. This gate had an ornamental latch with a lion’s face on it, which I enjoyed looking at. At first—so she tells me—Mom had no idea why I used to suspe
nd our walk in front of a total stranger’s house. But one day, when the lion latch had swiveled upside down, I tried to put it back the right way up, and then Mom figured out what was going on. She told me that you can’t just go touching other people’s gates without permission, so I did my best to twist my head around so the lion would at least appear to be the right way up.

  Looking back, I really can’t say why the lion on the gate fascinated me as much as it did. Perhaps I just thought, Wow, a lion on a gate—how cool is that? When neurotypical kids are interested in something, they can satisfy their curiosity simply by putting their question to the nearest adult before moving on to the next thing, and the next, and the next. Back then, however, I couldn’t ask anyone anything. My fascinations remained locked up in my head. Like time was standing still.

  There are times when I stand in front of doors or places you can’t enter and say in a loud voice, “Entry prohibited!” Or when I see a flowerbed, I can’t help but call out, “Don’t walk in there!” or “You’ll trample on the flowers!” while lifting one foot. None of this is about verifying whether or not these actions are allowed; rather, it’s to remind myself that I mustn’t do these things. I understand well enough what I can or can’t do, but when something captivates me, or when I get excited, it can get a little challenging to steer my actions. Because of this, I speak directly to my brain. I access the words or scenes that made an impression on me and vow to myself not to do anything that might be considered out of place. This might look ridiculous to other people, but it’s how I stay in control of things best.

  Because I have difficulty managing my speech and behavior, I live with a sense of resignation about things I’ve done in the past. It’s hard for me to explain my actions or to start things over from the beginning. Thanks to this, I’ve had my fair share of sad experiences. However, I’ve learned that neurotypical people are also tormented by past events. Human words and actions, I’ve come to understand, often go hand in hand with emotional pain.

  Even when you’ve made a blunder, I don’t want you to beat yourself up about it. I think if we can acknowledge all the variations of who we are, we can also be at peace with who we were in the past. Perhaps, by at least trying to stay on the right path, we humans won’t go too far wrong.

  When I pay for things in shops, I can’t always just hand over the money—sometimes it can take me forever. I’m a bit on the clumsy side anyway, but the main reason here is that I try to pay the exact amount. I know that it’s perfectly okay to hand over more than the total price and to get some change back—it doesn’t have to be the exact amount—but as soon as I see the price flash up on the cash register, my mind fixates upon handing over that precise amount of money. There are people who might advise me to pay with a thousand-yen note every time I buy something, but then that could become a new fixed pattern of behavior and the whole idea of receiving change could start to throw me. For example, I might ask for change when buying items that come to a thousand yen exactly, or that cost more than a thousand yen—and then get angry if I don’t receive it. This is why I practice paying the exact amount—or maybe a little bit more, to be on the safe side.

  One time I went out with my dad to an Indian restaurant. The naan bread was amazing. Dad asked me, “So how’s the naan?” and “Is the curry too hot, or is it just right?” It was nice that he was thinking about my enjoyment of the meal, but if I’m honest, I wasn’t much thinking about the menu or how our dishes tasted. To me, the most pressing matters were the fact that we had come out to a restaurant I hadn’t been to before and my anxiety over how I could finish the meal without bothering the other diners. The food was a secondary issue.

  Most people go to a restaurant to be served and to eat, but my main concern is whether they’ll let me in or not. Because family dinner outlets and fast-food joints are identical wherever you go, I’m familiar with the atmosphere and decor before I even enter—this is very calming. Eating out at new restaurants is much more of a challenge, but I want to broaden my experience. I’ll keep trying.

  Some people who have autism don’t like being seen, so they hide their faces behind clothing or blankets. My case was a little different: my motive for running off when I was younger was that I hated myself so much that I didn’t want anyone else even to see me. I’m guessing this isn’t easy for you to understand, but I yearned to vanish from the world. This wasn’t quite the same thing as wanting to be dead. It wasn’t that I hated the world, or life; it was a severe inability to accept myself for who and what I was.

  Yet at the same time, I was also convinced that one day someone would come along and rescue me from everything. All I wanted was to hide myself away until that day arrived. My reasoning was that if I couldn’t see anybody, nobody could see me. In fact I only reached a place where I’m okay with being seen when I was able, finally, to accept my disability.

  When I’m in shops or traveling I am often surrounded by strangers. I’m not good at handling these situations and they make me uneasy—not because of any strong urge to go home or because I don’t know what to do, but because of a fear that my unease could get badly out of hand and turn into a major inconvenience for other people. Maybe there’s not a lot I can do about this, but if I spend my life avoiding crowds because of a fear of what might happen, I’ll never be able to go anywhere. I need a whole array of tactics, I feel, but what I can do is practice. People with special needs shouldn’t give up. We should make sure we get out of the house. I’ll do my best, too.

  On a day of heavy snow my mother and I had planned to go to Tokyo. Midway, however, the train we were on was declared out of service. My mother figured we weren’t going to be able to reach our destination and decided to turn back. I’d never been in that situation before, and it became a very challenging situation. I knew the best course of action was to head for home, but I just couldn’t take this idea on board. What was going on?

  When it comes to sudden changes of plan, I need to obtain my brain’s consent. It takes work to accommodate my feelings to the change. I can’t simply tell myself, If we don’t turn back we’ll end up getting stuck in the snow; and anyway, we can always go another time. In a case like the one above, the trick was mentally to edit our destination. The action of boarding the train and what I’d do at our destination were unrelated. Of course it was a shame that we couldn’t arrive there as planned, but what my brain really got hung up on was not how I felt about the change, but the fact that I wouldn’t be able to confirm—with my own eyes—our arrival at the planned destination on the station signboard. So in order to avert a meltdown, I needed to alter the original station name in Tokyo that my brain had already memorized to the name of the halfway station where my mother and I got off the train instead.

  I managed to vocalize the change by naming the station and adding, “Left the train.” And my mother replied, “Yes, that’s right—we got off the train at such-and-such a station, didn’t we?” It was a bit like updating a computer file. By reciting this exchange many times, I was able to calm myself down. This is what helps me when I’m subject to confusion of this sort—being told off or ignored really doesn’t help at all. In the end, it dawned on me: in these situations, the source of all my difficulties is chaos in the brain.

  One of the hardest things for anyone is probably being unable to straighten out misunderstandings. In general, people are aware of how tricky it is for those of us with autism to express ourselves, but how about our inability to offer explanations or excuses? Our autistic traits tend to multiply misunderstandings by making us do things we didn’t really intend or blurt out sounds and words we didn’t really want to, or by preventing us from apologizing when we’d really like to. Nothing is harder than finding yourself steered into a situation you can’t properly explain your way out of…

  I give presentations all over Japan, but whenever I find myself at a new train station I always feel distinctly uneasy. It’s like the way I could never stay still the day before a school excursion an
d would keep pacing around, on edge. The more I think I have to stay on top of this, the more fiercely my obsessions or fixations are ignited. Anyway, my station obsession compels me to go looking through the station’s souvenir shops for confectionery or merchandise or anything emblazoned with a famous cute kitten character decked out in local clothes and objects. Once I’ve found it, I don’t buy it—all I have to do is point a finger at it and declare, “There it is!” and I’m satisfied. Perhaps this is close to what other people feel when they grip a good-luck charm from a shrine before an important exam.

  One time, after I’d already gone through the ticket barrier, I badly needed to retrace my steps to the souvenir shop I’d just left. Of course, I know you’re not allowed just to breeze back through a ticket barrier at a train station, but on that occasion I really had to go and see those items one more time—I had no say in this whatsoever—so I went back out of the gate I’d just gone through. The onlookers were pretty shocked: I’d barged out the wrong way without asking permission from the station staff. Very soon, a station officer caught up with me to demand an explanation, but all I could do was shriek the name of the kitten character over and over. To make matters worse, by now the officer was telling me, “Stay where you are—don’t move, please!” while I was trying to dash off to the souvenir shop. Just when I’d thrown that area of the station into complete chaos, my mother emerged from the stall where she’d been buying our lunch, noticed the commotion and came running. She explained to the station officer about my disability and the matter was soon settled. After that, we returned to the shop, I confirmed the kitten character was still where she belonged, we went back through the ticket barrier and got onto our bullet train without further ado.