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

by Naoki Higashida

  My father and my mother have not only given me love; they have created memories that will warm and nourish me, always. By sharing their lives, by their mutual sympathy and support—and by weathering rough patches—they renew our family’s togetherness. This is a lesson. Money cannot buy it.

  No such thing

  as a useless dad.

  No such thing

  as a useless kid.

  “Ah, I’m a total

  waste of space!”

  he says, and proves

  he wants to be

  a better dad.

  Now is that not

  one brilliant dad?

  In my life so far, I’ve experienced any number of hardships arising from my autism. These hardships arise in turn from the fact that our society is made up of a large neurotypical majority. You’d be forgiven for assuming, then, that I feel nothing but envy toward the “normal” majority, but that’s not the whole picture, not by a long shot. More and more, I’ve noticed the positives about having autism. Two things make this outlook possible.

  The first reason is that my parents were never in a state of denial about my autism, nor did they ever consign me to a “special needs” pigeonhole. They just strove to help me get better at doing the things I was good at. Working toward independence is really important and is a necessary part of growing up for everyone, but independence—in and of itself—won’t dispel or dilute autism. I attribute the ease I feel in my “autistic skin” today to my parents’ unwillingness to swallow fixed ideas about autism and their resolve to provide whatever education was working the best for me at the time.

  The second reason is that I’ve become better at making decisions for myself. Deciding things for yourself is a vital part of self-esteem. I believe that because my parents have always respected my wishes and feelings, my self-confidence had space to grow.

  Whenever I hear the words “Ah, it’s because he’s autistic,” I feel dismay. That word “autistic” packs a negative punch and this negativity, I think, corrodes the position of people with autism. For sure, functioning in our society is difficult for neuro-atypicals, but encountering difficulties is not the same thing as being unhappy. How has it come about that the word “autism” invokes pity? A part of the answer might be that we see so few role models of people living contentedly with their autism. The fact is, we have no choice but to live in a society where autism is thought of exclusively as a sorrow and a hardship—a fact that triggers further sorrow and hardship.

  Even I, as a child, used to think, “Wow, if only I didn’t have autism, wouldn’t life be great?” No longer. I can’t really imagine myself as not having autism because the “Myself” I’d be wouldn’t be the same Myself that I am now. A Me Without Autism, even one who looked exactly the same, would have an entirely different set of ideas and way of looking at the world. Losing one’s autism wouldn’t be quite the same as recovering from an illness that has temporarily crippled one, for example. It isn’t a case of a disease being cured or an injury being healed. It could well be that our brains are wired in different ways. People might say, “By becoming neurotypical, good things will happen and you wouldn’t be such a nuisance for everyone around you,” and I’m not denying that it would be a dream come true for people who have to live with autism at present. Nevertheless, how would you feel if you were obliged to undergo medical treatment for the sole reason that the person you are is an inconvenience? Not medicine to alleviate symptoms, but an operation to effect a root-and-branch change to who and what you are and remove all meaning from everything you thought was beautiful and precious?

  It is unfair that even the personalities of people with autism get invalidated because of our differences from the norm. I take it as a given that if I’m no good at something, I’ll have to practice at it. The tough part is when people get riled and reproach us for taking ages to learn what neurotypicals pick up effortlessly. At times like these it really feels hammered into me that I’m useless at everything. It seems to be not widely enough recognized that there are positives to be found in the neurologies of people with autism. If the world at large would take a deeper interest in how our brains work and research our uniquenesses—as opposed to focusing on our treatment and “cure”—we could take pride in our neuro-atypical natures.

  I wonder, sometimes: if I didn’t have autism, would I be able to interact with people who did have autism in the same way that I interacted with everybody else? Would I be able to explore the hearts and minds of those who live with such extreme difficulties and work out how to improve their quality of life?

  There are reasons why people with autism exist in the world, I believe. Those who are determined to live with us and not give up on us are deeply compassionate people, and this kind of compassion must be a key to humanity’s long-term survival. Even when the means of self-expression and/or intelligence are lacking, we still respond to love. Knowing we are cherished is a source of hope—and no matter how tough things get, you can always soldier on as long as there’s hope. Since I came into this world, I’ve benefited from many wonderful experiences. Thanks to friends, family and supporters, I can be grateful for what’s around me and keep a smile on my face.

  Life is precious, so we try to help each other; and as someone who tends to be on the receiving end of this mutual assistance, I feel especially heartened when people stay cheerful and positive as they assist me. Every single time someone treats me with kindness, my determination to live well from tomorrow is rejuvenated. This is how I feel empowered to give something back to my family and society, even if my contribution is modest. Thanks to the people who come to me with questions and ask for my opinions about things—never mind if I can’t always answer—I get to think about what I want. I feel blessed that I’m able to consider what kind of life would bring me contentment, and to exercise choices which might bring this about.

  I love nature, I have an interest in letters and numbers, and I’m fascinated by some things that other people have no interest in whatsoever. If these fascinations are rooted in my autistically wired brain and if neurotypical people are unable to access these wonders, then I have to say that the immutable beauties of autism are such that I count myself lucky to be born with the condition.

  Issues like our obsessions, fixations and panic attacks do need to be worked on, but rather than moaning about problems for which there are no quick fixes, I prefer to concentrate on my self-management skills, even if progress is gradual. To live a life where I feel blessed to have autism: that will be my goal from now on.

  All parents, I guess, feel sadness when a child of theirs is diagnosed with autism. Because I was the child being diagnosed and not my mother or father being presented with the diagnosis, I can only imagine being the child in that situation, who has to watch his or her parents surrender to that long-term sadness. However miserable you might be about your child, please don’t walk away. The child can’t change what they are. They don’t know why they aren’t the same as other children any more than you do, but, however hard things are for you, it’s harder for the child. Believe me. The child has nowhere to walk away to and you are the only people they can turn to for help. Will your child’s autism wholly transform your lives, and if so, how? While I don’t have the answer, there isn’t much that time doesn’t help with. A child with a disability has entered your life, but must that degrade your life’s value? You choose how you live your life. Wherever you go, whatever you do, whatever happens to you, your essential nature stays constant, I believe. Yes, raising a child with autism can be highly demanding, but please remember, just as you worry about your child, so your child worries about you.

  My own parents have never discussed my future all that much since the time I was small, it seems. They never thought that because of my disability I had to follow such-and-such a route. Thanks to that, for better or for worse, here I am, as I am. Your child, too, will one day be an adult. For them to live life with the same degree of independence as neurotypical of
fspring might be difficult, but one day your child-rearing, child-minding days will come to an end. Parents grow older until they can no longer look after their adult children. The period in which we are together as parents and child is finite. So please, while the child still is a child, and while you’re still around to do so, support them well. Laugh together and share your stories. You won’t be revisiting these years. Value them. That’s all I’d ask.

  Sometimes I go out with my special needs helper to a local supermarket. To practice shopping, I buy my own snacks. Today, in the corner of the food section, I saw they were selling bunches of red carnations for Mother’s Day. I thought, I’d like to buy some for Mom. But, of course, I wasn’t able simply to vocalize this thought because it’s so hard for me to tell others what I want via speech or gestures. On this occasion, however, I managed to produce this two-word line: “Carnation…Buy.” My helper was pretty gobsmacked! Here’s how I pulled it off. First, I replayed a “memory clip” of carnations in my head. By viewing this clip, I was able to say the word “carnation.” Next, to access the verb I needed to go with the flower, I directed my thoughts to what I was doing at the time. Words like “walk,” “see” and “think” floated through my mind, but then, the fact of our being in a supermarket unveiled the word “buy.” That verb was the best fit for the word “carnation” and by combining the two I got “Carnation…Buy.” Once there, I was free to think, That’s what I need to say! and—finally—I said it.

  I only had enough coins with me for a single flower, but when we came home and I gave the carnation to Mom, she was elated. I’m still not good at the practical aspects of buying things without assistance, but it was fantastic that I could tell my helper what I wanted to buy. And I’m still a long way from being able to speak in this way whenever I want to. I know now, though, that there are times when, in a pinch, I can pull it off. Giving flowers to my mom on Mother’s Day was a dream I’d been harboring for years. Today, one red carnation in a room at home did all my talking for me.

  The communication methods that I, with my severe autism, have used so far in my life are “hand-supported” writing, letter-tracing on the palm of a transcriber and, these days, independent pointing at the letters on an alphabet grid. The first—the hand-supported writing—involves writing on paper with a pen while an assistant is lightly cupping the back of the writer’s hand to help keep him or her on task. Letter-tracing is not dissimilar, but here I trace the letters onto the open palm of a transcriber rather than onto paper. These days I use the alphabet-grid method—without anyone’s help and without any physical contact—to express my thoughts and feelings. My alphabet grid resembles a standard QWERTY keyboard, with the letters and numbers written onto a card. Recently I’ve become able to vocalize the characters as I spell out words by touching them in the right order with my index finger. For creative writing, I switch to my computer. My alphabet grid is best for on-the-spot verbal communication, because when I use the computer I can get sidetracked by typing in whatever words pop into my head, or by its phonetic alphabet-to-Chinese character (hiragana to kanji) converter. There have been times when the person I’m communicating with has been left waiting for ages.

  Until quite recently it was said that people who have severe autism could never express themselves. So a number of people might have been surprised to see me setting out my thoughts via the alphabet grid and computer. As I’ve been conveying the story of my inner life to the wider world I’ve learned that many people—both with autism and without—find that my writing strikes a chord with their own experiences. What is this common chord? The answer, I think, is to do with those emotions that crush us all. Evolution appears to have resulted in the mastery of reason over what we say and what we do, but in reality, it’s rare for our minds and hearts to be wholly rational and stable. We fret over how best to tame our feelings and attain a state of equilibrium. By translating our states of mind into words, perhaps we can better grasp the reasons that underlie our insecurity. To live a positive life, understanding and acceptance are key. We all seek the courage to stand up again after falling down. It would mean the world to me if this book could occasionally serve as a gentle nudge in the right direction.

  NAOKI HIGASHIDA

  Japan, 2015

  BY NAOKI HIGASHIDA

  Fall Down 7 Times Get Up 8

  The Reason I Jump

  About the Author

  NAOKI HIGASHIDA was born in Kimitsu, Japan, in 1992. Diagnosed with severe autism when he was five, he subsequently learned to communicate using a handmade alphabet grid and began to write poems and short stories. At the age of thirteen he wrote The Reason I Jump, which was published in Japan in 2007. Its English translation came out in 2013, and it has now been published in more than thirty languages. Higashida has since published several books in Japan, including children’s and picture books, poems, and essays. The subject of an award-winning Japanese television documentary in 2014, he continues to give presentations throughout the country about his experience of autism.

  About the Translators

  DAVID MITCHELL is the author of seven novels, including Cloud Atlas, The Bone Clocks, and, most recently, Slade House. KA YOSHIDA was born in Yamaguchi, Japan, and specialized in English poetry at Notre Dame Seishin University. KA Yoshida and David Mitchell live in Ireland with their two children.

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