My brain has this habit of getting lost inside things. Finding the way in is easy, but—like being in a maze—finding your way out again is a lot harder. I want to exit the maze right now, but I’m forced to stay inside it. This applies also to time and schedules. They constrain me. I’d like to live without these constraints as far as possible. Students use school timetables and lots of people rely on daily planners and the like, so it’s tempting to jump to the conclusion that schedules must be a good thing for all neuro-atypical people as well—and in the context of school timetables whose items occur unchangingly and within a fixed time frame, I find them useful too. However, a schedule made of mere sequences of events unlabeled with a time is an entirely different entity for me, and not a helpful one. Other people might be able to handle changes to schedules quite easily, but when I have to accommodate myself to a change in a pre-fixed plan, I find it utterly exhausting, while assembling actions in a future itinerary is agony itself! I guess in any context there will be a “majority” way of doing things and a minority who must find an alternative. What’s important to consider is how best we can address our deficiencies or uniquenesses and what kind of help would make our lives most manageable.
Some people perceive one season giving way to the next gradually, but for me they switch over all of a sudden, within a single day, like the turning of a page in a picture book. I’m not saying that I receive no advance warning at all of an impending change in the season. I sense it’s coming from people’s apparel, the color of the sky and the way the sun glows; and then, like finding the answer to a question in a quiz, as soon as something symbolizing the incoming season appears, I know the new season has arrived. Nowadays I wait for the “changeover day” with great anticipation. I’m one of those people who get anxious when they don’t know what happens next, and turning this anxiety into a pleasure has taken me a very long time.
There are people who remember they were doing Action A before they got sidetracked by Action B only when it is pointed out to them. These people seem to have no idea why it was they got distracted from their original purpose; they just were. I appear to be different: I never forget what I was doing—a household chore, a leisure activity—before I switched to something else. Neurotypical “forgetters,” however, possess a palpable sense of the flow of time and this ordinary absentmindedness doesn’t cause major inconvenience in their daily lives. This makes me wonder about memory connectivity, and how yours might differ from mine.
The signposts that cordon off one event from another in my memory are indistinct and lack the clarity and consistency of phrases like “until I go to bed” or “every hour.” These “memory events,” I would say, exist between the core of a heightened emotional state—triggered by something significant—and my return to the condition I was in previously. I asked my mother about this, and she told me her memories exist as a system of summaries, indexed according to how she acted and what she felt at the time. When it comes to memories from long ago, only single scenes of the original events might remain intact.
Our ways of remembering can vary widely, it seems. It interests me how our behavior in the present can be influenced by memory. A memory can be transformed into a joyful or painful one, purely depending upon how we process or “digest” it.
Some bask in the light.
Others mourn in shadow.
What is justice?
What is vice?
It’s not easy to decide.
All I know is
humans are absurd
creatures, yet wise.
One of the lessons I’m grateful to have learned as an adult is that life serves up hard times to everyone, not just me. I understood this not by having grown into some super-wise, compassionate being, but simply by experiencing life and observing the reality around me. Many people with disabilities are, I think, kept isolated and insulated from society. Please give those of us with special needs opportunities to learn what’s happening in the wider world without deciding on our behalves—by assuming They won’t understand anyway, or Well, they don’t look that interested. On the surface, a sheltered life spent on your favorite activities might look like paradise, but I believe that unless you come into contact with some of the hardships other people endure, your own personal development will be impaired. A knowledge of one’s blessings is a valuable lesson about life, from life.
Who would actually want to be sectioned off and receive particular treatment, just because they have special needs? I don’t like the thinking behind the sentiment, Oh, we should make allowances because of his disability. On the other hand, it is a cold hard fact that a lot of us wouldn’t be able to live independently. People with special needs should be accepted into society along with everyone else. If this statement was put to me I’d agree with it, wholeheartedly, but then again, when people are exposed to a counternarrative often enough, it’s that new version which ends up being accepted as the truth instead.
What I wish to say is this: the value of a person shouldn’t be fixed solely by his or her skills and talents—or lack of them. It’s how you strive to live well that allows others to understand your awesomeness as a human being. This miraculous quality touches people. Via this “how,” people consider the sanctity and validity of everyone’s life, whether special needs are involved or not.
I never dreamt that The Reason I Jump would find the audience it has done. To be honest, I still can’t believe it. When I was first asked about the book’s international reception in an interview, I replied, “I nearly fell off my chair in shock.” I admit I felt happy, but I didn’t feel proud of myself or a big sense of achievement. I just mean that it all went so far beyond my expectations. That the book has sold all over the world is an enviable thing, I guess, but at the same time I can’t help but feel a little ambivalent about success. I don’t view myself as a major literary figure.
That said, what is this thing, “success”? Reaching a goal you set yourself, I suppose. You’ll never know if it’s paradise or what it is until you attain that goal. Success stays out of reach, sometimes, however hard we chase it. Just because other people acknowledge your success doesn’t mean you will derive satisfaction from it. For a person like me with full-on autism, success might be particularly difficult to visualize. In order to succeed you’ll definitely have to fail, and for us, old memories of previous failures can be things of terror. For me, success is not some invigorating, emotional experience, like taking in the view from the summit of a high mountain. It’s more like walking a high wire, barefoot, in a circus tent. Once you reach the far side you’ll earn your round of applause—but the big drop down can happen at any moment! Only people who think of success as an end in itself will see it as a shiny, sparkling state.
Some people with autism can obsess over how not to fail, and I’m not saying it’s wrong to be afraid of failure. I’m saying we need to squeeze out every drop of courage and get back up when we do fail. Success can be regarded as a product of countless failures; or as something that comes into view after taking many small steps up a steep slope. People generally judge something to be a success or a failure according to results, but I think there’s more to it than this. I’ll respect a person who’s still at the foot of a mountain but standing firm and looking up at the peak. In the eyes of even those people who seem to be furthest away from “success” you might find reflected the image of a beautiful mountain. I’m truly grateful for my luck that my words have found an audience; and now it’s time for a different, taller, mountain.
PART 1: A TO M
A: How do you usually talk with your family? Do you ever argue? If so, what about?
I communicate with my family via my alphabet grid, or by tracing letters onto their palms. Sometimes I can manage to articulate a word that I’ve had lots of practice at saying, and other times I produce noises “Ah-ah-ah, ah-ah-ah”—like a primitive caveman—to signal my wishes. Matching situations to the right words is extremely difficult for me. There are times when I
get confused and lose my cool when I’m at home, but I don’t really argue with my family. Opportunities to argue never really come along. People argue when they don’t compromise with each other. I think you can’t really change other people, so it makes sense to look for an answer that takes your antagonist’s personality into account. Perhaps the reason we don’t argue at home is that I try to choose the peaceful way out.
B: Do you dream? Have you had any good ones lately?
I do dream, yes. Not long ago I dreamt I was walking a puppy in some unfamiliar place. The puppy started running off and I followed, dragged along by the leash I was holding. We arrived at this huge mansion. My mum came out—she looked kind of doglike—and said to the puppy, “Welcome home, Naoki my dear.” Then she hugged the puppy and they disappeared inside the mansion. Meanwhile I went off to my kennel in the corner of the garden.
C: What’s the first thing you do in the morning? What do you eat for breakfast? Are you a fussy eater?
On weekdays I get up at 6 A.M. and on weekends it’s 7 A.M. The rest of my family is still sleeping, so I go and sit on a chair in our living room and do nothing much. I listen to the birds or watch the second hand of the clock and wait as time passes, not thinking of anything in particular. To begin my day this way is a luxury. At 6:30 A.M. I turn my attention to my morning household chores, like starting the washing machine or drying the dishes. For breakfast I eat toast, miso soup and bits and pieces. Foods I don’t like include sea urchin, salmon roe, chawan-mushi savory custard, coffee and alcohol. My favorite food is fried chicken, hamburgers and fries. I can eat quite a lot.
D: We’ve heard you like going to karaoke studios. Is singing easier for you than speaking? How do you feel when you sing?
I sing all kinds of songs, from nursery rhymes to anime songs to Japanese pop music. While I’m singing, I feel as if I’m the main character in the song. I really love this. Yes, singing is easier than speaking—I guess it’s because songs have rhythms. Reading aloud is also difficult for me. The longer a sentence goes on, the more lost I become. I’d like to keep on reading, but I get anxious about intonation and end up reading the same part many times. Or I get irritated that I keep losing my place while “The End” feels a long way off.
E: Do you have any favorite sports? Which baseball team do you support?
Right now, I don’t have any favorite sports or a favorite baseball team, I’m afraid. However, I find the rhythmic motions of athletes’ bodies as they run beautiful—I can’t help but watch. I really don’t care who wins and who loses in sports or games.
F: You wrote a poem once about someone you like. Is there a person you’re interested in at the moment?
Not really, no. The whole world of love and relationships is full of mysteries. I know nothing about it. Yet.
G: In The Reason I Jump you wrote, “My memory isn’t a continuous line but a collection of dots.” Does this mean that the things you experience every day add more and more dots to a big blank canvas?
I’d say it’s more as if experiences become stars in the sky, one by one by one. A blank canvas is two-dimensional, but my memories are arrayed here and there in 3D. Some stars I can reach out and touch, while others are hundreds of millions of light-years away.
H: At what stage do you consider a person to be finally “grown up”?
Maturity, I’d say, is a matter of progressing ever closer to your ideal self. A mountain has various routes to its summit, and sometimes it feels like you’re not making progress, but maybe these times are needed to attain your goal. Perhaps you can’t even be sure whether you’re making progress or not. I tend to ignore what people think about my progress because I can gauge it myself just by seeing how far I’ve come. If my present situation slid a little, relative to my past, I’d view it as a necessary stage for my future self. “Grown up”: a valid pair of words.
I: When life gets unbearable, what should I do?
Please don’t assume there’s an easy exit. Be still, be calm, and spend today just living, like you did yesterday. People can live okay without confronting their pain. What brought you here isn’t your fault. We human beings have to live each day to its fullest and do our best in whatever environment we find ourselves in. There’s no need to feel any shame just because your “fullest” and “best” look different from those of others.
J: It’s been four years since I began selling The Big Issue, and now I’m starting a new life. Thanks to one of your books [sold exclusively by Big Issue vendors in Japan], I’m able to support myself. I can’t fully express how grateful I am, and I still read the book when things get too much. What do you do when you’re depressed?
First off, I’m really pleased to learn that you’re able to support yourself. I get depressed usually when I’ve failed to do something. My failure will remain in my head as a memory—what’s done is done. But if I stay depressed, the failure-memory will be worsened by having a Depressed Me in it. I don’t want this, so to avoid it I visualize myself getting back on my feet as quickly as possible. If I can turn a memory of me failing into a memory of a victory over adversity, then I can overcome any failure.
K: In one of your books, you write, “While I don’t consider that people with disabilities need be thought of as unfortunates, I think ideally we need to evolve our own sense of values.” I just can’t help envying other people. How can I live without comparing my own situation to that of those around me, and keep my sense of values solid?
It’s okay to envy other people, I think. While you’re envying, you also feel a pull to improve your situation. We are human, and so comparing ourselves to others makes us depressed. It’s okay to feel that too. You don’t necessarily need a solid sense of values just to get by. People change, of course. It’s best they do. Our new selves emerge from the times and circumstances we’re in and the people we meet. We have no choice but to live among other people. All I’d suggest is, while you’re comparing yourself to other people, remember your own blessings.
L: Since being present during the final moments of someone close to me, I’ve started thinking more concretely about preparing myself for the end of my own life. Do you have any thoughts on this topic?
I’m still too young to answer your question, I’m afraid. Living my day-to-day life and thinking about the end of it, that’s a little too much for me at the moment.
M: What’s the best way to be around and assist people with disabilities? Sometimes I wonder if by trying too hard to be fair and equal, we end up being unfair and exacerbating inequality?
I agree this can happen. People can only understand their own pain. Even a genuine desire to help a person with a disability can become a burden or a discouragement for the person on the receiving end. It is important for helpers and therapists to ask themselves, If I was the person I’m helping…? It would be useful also if they double-checked that the assistance they’re offering is of real relevance to the person with special needs, and not about gratifying their own desire to care. Easier said than done, I know.
“I’m home!” and “Welcome back!”: I’m really not good at this fixed call-and-answer exchange. Sometimes I parrot back whichever one was just said or else I just blurt out the wrong one. This is because the two phrases “I’m home” and “Welcome back” come as a set pair. Every time I’ve called out “I’m home!,” I’ve received a “Welcome back!” without delay, so the phrases have gotten inputted into my memory simultaneously. When I have to act according to preset instructions, I have to sift through similar memories. Like the credits scrolling at the end of a TV program or movie, these memories replay—without audio, which explains why it’s so hard to know what to say at these “I’m home!” or “Welcome back!” moments.
Even nowadays, I’m prone to blurting out phrases I used to intone in my special needs school days: formal announcements like “The work session starts now” or “The class is over.” I don’t utter these phrases because I want to, or because I’m thinking back to my school days.
It’s very like a replay button that I have no control over. I used to rehearse these phrases countless times, so they became ingrained in my mind. There are other words I say just for the pleasure of saying them. This is the same as wanting to play a favorite piece of music. I’m conscious of my voice at these times, because I can—sometimes—stop when I’m asked to. It’s taken me a long, long time to understand myself to the level that I now do. By focusing on topics like these, you can see that some aspects can be improved by practice while others can’t. As a general rule, lessons don’t tend to stick if I’m shown how to do things on the heels of a telling-off for not doing them correctly. It’s really important that we work out for ourselves why we can’t master a skill, and what we can then do about it.
Quite often I murmur words to myself. Many of these words have no meaning, but others are words I use to communicate. It’s easy for people to say, “Use expressions like your tools” or “A conversation is like throwing a ball back and forth,” but it’s so, so much easier said than done. Being nonverbal creates problems and compounds stress, and those of us in this position are, as you’d expect, desperate to find words when something wonderful or sad or awful has happened. There are other times when we wish we could speak that might surprise neurotypical people, I think. People around us—helpers, caregivers, family—would love to know why a person with autism is sobbing their eyes out or behaving so mysteriously. But in my case, at least, I wish more than anything that I could speak to people in my family and ask them, “What’s the matter?” if they look gloomy, and, “Are you okay?” Or, when I’ve caused some ruckus or problems for people, I’d love simply to offer an apology, to give them a simple “I’m sorry.”
Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism Page 4