Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism, Page 5

  These words we really want to say look so straightforward. They’re not specialized words for providing reasons or for explaining ourselves. It’s the more trivial-seeming, commonplace words that we’d love to have at our command.

  The first step toward finding a way to interact with people is to want to. Since I’ve become better able to communicate with others via my alphabet grid, I’ve been taken aback by how much my words can affect and even move people. Exchanges of thought are, to a large degree, reliant upon this thing called language. Thanks to it, human beings—and we alone—can truly enter and explore the feelings of others. What an extraordinary skill.

  We’re listening to everyone around us and we hear you, you know. When people are in the company of people with severe autism, they say whatever comes into their heads, unfiltered. It’s as if we don’t even exist. The explanation, no doubt, is that we don’t react visibly to what is being said.

  When people try to teach us things, they apply themselves to the job and deploy various strategies, and when they think they’ve succeeded, they feel good about it. However, why does it so often fail to dawn on them that if we’re smart enough to understand their instructions, we might well also be capable of understanding the everyday language that’s going on around us all the time? Might it not be the case that the part we have trouble with isn’t working out what neurotypical people are saying, but how to respond appropriately after hearing instructions? Have you never thought, “This person couldn’t have performed that action unless he or she had understood what I was saying”?

  Regrettably, I can’t avoid concluding that too often too many people interpret those of us with autism in ways and for reasons that serve their interests first, and ours a distant second.

  Back in the days when I had no ways to communicate at all—no writing, pointing on my alphabet grid or verbal expression—I was extremely lonely. People who have never experienced this will go through life never knowing how soul-crushing the condition of wordlessness is. If I tried to describe what it’s like to be nonverbal in the World of the Verbal in a single word, I’d choose this one: agony. And yet, this is also true: if we know there is even a single person who understands what it’s like for us, that’s solace enough to give us hope.

  For a long time I was tormented by the question, How come I’m the only one here who can’t talk? Why me? I often used to dream that I was able to speak. This chapter might make uncomfortable reading for those of you who live and work alongside people with nonverbal autism, but I’d like you to remember: there are lots of us, and this is what we go through.

  None of which is to say that people who can’t communicate should automatically be relegated to being sorry objects of pity. By living with extreme hardships day in and day out, by constantly challenging and asking questions of themselves, they search for meaning in their own lives and many of them might, eventually, access a mode of fulfillment beyond the reach of neurotypical people. A worthwhile existence lies in playing whatever cards life has dealt you as skillfully as you can.

  My means of communication is not ordinary. I guess a full scientific analysis of how I do what I do would get quite complicated. In my case, since I’ve learned to touch letters “freehand” on my alphabet grid—without support from my mom—people generally accept that it’s my own ideas that I’m expressing. However, among people with special needs who practice a similar mode of communication to mine, some are working with alphabet grids almost in secret. Perhaps the secrecy is to avoid accusations of “cheating,” but I dislike the idea of settling for a position that says, Look, this system of communicating is valid enough for sympathetic insiders—it doesn’t matter what everyone else thinks. This is tantamount to a cop-out by all involved. In my opinion, nobody who’s struggling to master a system of nonverbal communication would back this position. Even if they said as much, I suspect they’d be saying it for the benefit of their parents or therapists, rather than because they honestly believed it.

  So what has enabled my achievement? To my mind, a big part of it is that my mother never said to me, “Look, it’s good enough for the people who want to understand us: never mind about the rest.” Whatever the obstacles that might spring up for us wholly or partially nonverbal people with autism, the ultimate goal is to keep honing our skills until we are understood by everyone. Everyone.

  When you want to tell somebody something, how do you go about it? Before I could express myself at all, I used to believe that just by learning to communicate a little, I’d be able to make myself understood about anything and everything. Not true, it turned out. Although I can get my meaning over to some degree, much of what I really wish to convey is spoken prayer-like, mantra-like, silently, but over and over, in my heart. Words aren’t everything, I’ve come to learn. Please remember: the reality of a nonverbal life is way, way harder than the verbal majority can imagine.

  It’s just not nice

  when rumors about you

  are flying around the place.

  Once you know you’re being

  discussed, you can’t go back

  to the way you were.

  However, knowing the rumors

  are out and about need not

  have a detrimental

  impact. Rumors per se

  aren’t bad. What matters is

  the use you put them to.

  One day I was going out and my mom asked, “Do you want gloves? Or don’t you want gloves?” I replied “Gloves” straight off, even though, in truth, I didn’t want the gloves. Questions can be really tricky for me. In the past, whenever I was asked a “Do you want x, or don’t you want x?”–type question I used to answer “Don’t” because latterly heard words stick best to my memory. To ameliorate this, when people ask me a binary question, I ask them to juggle the positive and negative options around, or to write the question down. This helps to a degree and I echo questions back much less than I used to, but it’s still difficult for me to answer as quickly as I’d like, or to express my wishes accurately.

  Obtaining items just by using words is a pretty amazing thing, to my mind. As long as phrases for making requests are fixed and limited in number, I think it’s possible to acquire them. With lots of practice, people like me can learn these “request phrases” as patterns. The results—getting what you asked for—are immediate and visible, so this approach is well worth the effort. Responding to questions, however—that’s not so straightforward. Why we still can’t answer the same question—irrespective of how often we practice—must baffle neurotypical people. The thing is, at least to me, it isn’t the same question. You focus on the question’s “conceptual workings,” I guess, but to get a handle on a question, first I have to sift through my memory for scenes where similar questions were asked; then I have to summon up and deploy the words that worked in those “matching scenes” last time around. Of course, in reality not everything about the remembered scene is going to match the current moment, and unless everything about the questioner—clothes, hair, face, as well as identity—corresponds to the old memory, then a new “Q&A memory scene” gets created by the moment we’re in. The question’s exact wording, timing and tone also come into play. Video segments and TV commercials are easier to view in my head because they never vary, and in formal classes or lesson-like contexts I find it a little easier to access language than in daily life, thanks to the consistency of classroom routines.

  Among people who have autism and speech challenges, I think there will always be individuals whose “verbal blocks” come from the same place as mine. They too, I believe, can unlock language by referencing common points between memory scenes and the moment they’re in. This might take a great deal of practice, but their family, helpers and teachers mustn’t give up on them. The person with special needs will sense that resignation, lose their motivation and stop trying to speak. This can erode even their will to live. Believe me. Communication is the person, to a major degree. Please don’t be the first to walk aw
ay.

  Spoken language is a blue sea. Everyone else is swimming, diving and frolicking freely, while I’m alone, stuck in a tiny boat, swayed from side to side. Rushing toward and around me are waves of sound. Sometimes the swaying is gentle. Sometimes I’m thrown about and I have to grip the boat with all my strength. If I’m thrown overboard I’ll drown—a prospect so disturbing, so laden with despair, it can devour me. At other times, however, even if I can’t swim in the water, I gaze at the play of light on the surface, delight at being afloat on it, trail my hands and feet in the sea, and dream of jumping in with everyone else. When I’m working on my alphabet grid or my computer, I feel as if someone’s cast a magic spell and turned me into a dolphin. I dive down deep—then shoot back up, break the surface and surprise all the swimmers. The process can feel so free, so effortless, that I almost forget I was ever stuck in that boat.

  For me, there are two types of sentences. The first type I write for no audience but myself, just for the pleasure of turning my imagined world into words. Because nobody will read this work I write quickly and almost casually, as if I’m solving a simple puzzle. The second type of sentence is written with publication in mind, so I do my best to edit and correct these to make them presentable. I try to ensure that my autism-influenced senses don’t take my sentences too far from the reader’s experience. Especially with creative writing, I think a writer needs to work with the reader’s imagination in each and every sentence. Narcissistic writing causes nausea for the reader. Writing prose that I know will be read feels like discreetly placing a manuscript on a mountaintop and leaving it there. From a good vantage point at the foot of the mountain, I can look back up and watch travelers finding, crying or smiling over the pages I left up there. The mountaintop looks far away, but their voices echo down to where I’m listening.

  When I’m communicating using my alphabet grid, sometimes I make corrections. If I’m pointing at a “wrong” letter, I don’t vocalize it. Then I restart by pointing at the new letters and spell out the words I really mean. Making a correction isn’t easy for me, I must admit. Bringing out my inner self already takes up a great deal of energy, so I try to deploy my alphabet grid only after I’ve arranged my sentences in my head as best I can. If I express myself with concision and accuracy, I don’t need to spend too much time on this. Sentences that aren’t too long can be stored in my head. Rather than writing them down first and then needing to edit them, I prefer to store them there for a while. When needed, I take them out of storage to see if any parts are broken or if the style passes muster; then I hone them until they’re finished.

  There are times when all goes well, when I compose a sentence and stand back just to enjoy it. This sensation is like admiring a tall building I’ve designed. With luck, the building has no wasteful elements and every detail is noted and works. It blends in with the surrounding scenery and looks as if it was always meant to be here. These are the buildings I aim to construct.

  When I’m writing a story, I try to inhabit it by becoming the main character. Passing to and fro between the world of the story and my daily reality, the dreaming boy I once was coexists with the adult I am now. Time loses definition. Translating into words the thoughts and landscapes that appear in my head brings me profound fulfillment. I don’t really map out my plots or decide upon a structure too much in advance. As I write, a story’s elements kind of settle into place by themselves.

  Ideas and emotions exist first, to my mind; words come second, to give form to the ideas and emotions. Certainly, people with an impressive vocabulary can express their ideas more precisely, but these ideas exist independently of the words used to describe them. I wouldn’t say that the more words you acquire, the richer your sensibilities. Pleasure, sadness, likes and dislikes—we all feel these, but who can capture every last sensation they ever feel in words alone?

  I don’t have “favorite words” based on how they sound to my ear. Words are animated by meaning, after all. Sounds in nature—the chirping of crickets or a bush-warbler’s song—attract me more than the sound of words. The fact that these creatures don’t speak in words as such but send out messages using their whole bodies is a mystery to me, a mystery that human beings cannot duplicate.

  People, when wounded by words,

  replay those words endlessly

  and down they sink

  into themselves.

  Wise to remember:

  words are only words.

  No need to swallow, too,

  the feelings that encase them.

  The other day, when it was time to say “Thank you very much” to my helper for taking me out and bringing me safely home, the phrase that came out of my mouth was “Have a nice day!” I’ve been working on these verbal set pieces for ages and ages, but I still can’t master such simple exchanges. Talking is troublesome for me. I’d like to work through what was happening in my head when I made the mistake with my helper.

  1) I wanted to say the correct thing to my helper. (In my head, “Thank you very much” is stored in the “Everyday Phrases” category.)

  2) As soon as I tried to express my thanks, my mind went blank.

  3) I floundered, having no idea what I needed to do next.

  4) So I looked down, and saw the shoes my helper was wearing as he stood in the small entrance hall of our house…

  5)…which reminded me of seeing my father’s shoes there earlier in the day in the very same place.

  6) The scene of me saying “Have a nice day!” to Dad flashed into my mind.

  7) I remembered that I needed to say something to my helper…

  8)…so I blurted out the phrase that was already in my head: “Have a nice day!”

  Can you imagine a life where you’re confronted at every turn by this inability to communicate? I never know I’m saying the wrong thing until I hear myself saying it. Instantly I know I’ve slipped up, but the horse has already bolted and people are pointing out my error, or even laughing about it. Their pity, their resignation, or their sense of So he doesn’t even understand this! make me miserable. There’s nothing I can do but wallow in despondency.

  The best reaction to our mistakes will vary from person to person, and according to his or her age, but please remember: for people with autism, the pain of being unable to do what we’d like to is already hard to live with. Pain arising from other people’s reactions to our mistakes can break our hearts.

  For people who have restricted speech, it’s not easy to express a “thank you.” Some neurotypical people might find it a bit puzzling that nonverbal people like me use our alphabet grids so much of the time to broadcast our gratitude. Of course, there are also occasions when I want to highlight problems, but I’m extremely unwilling to use up the precious chances I get to express myself on relatively trivial matters. Try imagining you’re a resident in a foreign country where you’re wholly ignorant of the language, but a person there is taking excellent care of you. Then, one day, along comes an interpreter who offers you a strictly limited period of time in which he or she will translate anything you wish to say. How would you use that opportunity? Would you really want to spend it mouthing off about the miseries you endure thanks to your feeble grasp of the language? Maybe many topics would spring to mind, but if you’re with someone you respect, I think the chances are high that, first and foremost, you’d want to express your appreciation. See what I mean? When time is short, most of us would go for gratitude, especially if we don’t know when we’ll next get the chance—if ever—to show our thoughts and feelings. “First things first” is king.

  These days I’m a person who can tell his family whatever I wish to. Time is my ally. This is a luxury I treasure.

  When I was in kindergarten I learned how to use scissors and, when shown where to stick my cut-out shapes, I could glue them on. Completing a “scissors and glue artwork” all on my own, however, was a very tall order: I found it nearly impossible to fix the method in my memory, even as I was being shown it. I r
eally envied all the other kids who could finish their cut-out-and-paste pictures without any help and in no time at all.

  These days, provided the art books I’m using are geared to quite young children, I can do these tasks on my own by referring to the diagram that shows how the finished picture is supposed to look. Now, I can’t exactly blow my own trumpet about this—the exercises are actually for children aged four to six—but I get a lot of pleasure out of doing the required tasks independently. Once upon a time, it seemed unimaginable that I would ever be able to manage this kind of job. It might have taken me thirteen years to get to this point, but at long last I’m able to tell my deflated, kindergarten self, “Stick at it—you’ll get there one day!”

  In the past I was totally useless at paper-craft work, even when I was guided through the process. These days I can do it without any help at all, which pleases me no end. When I’ve finished a piece, I’m supposed to affix a “Well done!” sticker to it. My first completed paper-craft object was a rabbit, so the sticker I chose had a rabbit on it. The next animal I made was a snail, but as there weren’t any snail stickers, I asked my mother which one I should go for. She told me I could choose any sticker I wanted from the wide range on offer. They were a kind of prize or reward, she said; “Just pick the one you like.” This threw me into a quandary. Expressing preferences is tied to thoughts and feelings, and because I have difficulties with my thoughts and feelings, it follows that I also had problems when it came to selecting my “Well done!” sticker. So as soon as a panda sticker jumped out at me, I unpeeled it and stuck it onto my snail. Mom approved: “That’s the way, Naoki, just choose whichever sticker takes your fancy.” To this day, I bet she’s convinced I have a special liking for panda stickers. This is a classic example of how easily nonverbal children with autism can trigger a sequence of misunderstandings.