Текст книги "The Reason I Jump: One Boy's Voice from the Silence of Autism "
Автор книги: Naoki Higashida
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Психология
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Q38 Why do you line up your toy cars and blocks?
Lining things up is the best fun. Watching running water is great fun, too. Other kids seem to enjoy games about pretending and make-believe, but as a person with autism I never really see the point of them.
What I care about—in fact I’m pretty obsessive about this—is the order things come in, and different ways of lining them up. It’s actually the lines and the surfaces of things like jigsaw puzzles that we love, and things like that. When we’re playing in this way, our brains feel refreshed and clear.
Q39 Why do you like being in the water?
We just want to go back. To the distant, distant past. To a primeval era, in fact, before human beings even existed. All people with autism feel the same about this one, I reckon. Aquatic life-forms came into being and evolved, but why did they then have to emerge onto dry land, and turn into human beings who chose to lead lives ruled by time? These are real mysteries to me.
In the water it’s so quiet and I’m so free and happy there. Nobody hassles us in the water, and it’s as if we’ve got all the time in the world. Whether we stay in one place or whether we’re swimming about, when we’re in the water we can really be at one with the pulse of time. Outside of the water there’s always too much stimulation for our eyes and our ears, and it’s impossible for us to guess how long one second is or how long an hour takes.
People with autism have no freedom. The reason is that we are a different kind of human, born with primeval senses. We are outside the normal flow of time, we can’t express ourselves, and our bodies are hurtling us through life. If only we could go back to that distant, distant, watery past—then we’d all be able to live as contentedly and as freely as you lot!
Q40 Do you like commercials on TV?
This is a difficult one. I’m not quite sure what the answer is. If you figured that we must like TV commercials just because the slogans and catchphrases roll off our tongues so easily, that wouldn’t be the full story. We remember them as well as we do because they’re on so often, and sure, we dash to the TV when a familiar commercial comes on. We enjoy watching the ones we know well. How come you people without autism aren’t that keen on TV commercials? They’re on again and again and again, after all—so isn’t seeing them a bit like being visited by old and dear friends?
I’m not a big fan of TV commercials in and of themselves, but when a familiar ad comes on, I get quite excited about it. This is because when a familiar one comes on I already know what it’s talking about, and I feel sort of soothed knowing that they never last for long. The reason why we look happy to your eyes while we’re watching TV ads must be that at all other times we’re less stable and calm, and our faces are blanker. Perhaps what you’re getting when you look at us watching commercials on the TV is a brief glimpse of the Real Us.
Q41 What kind of TV programs do you enjoy?
Even at my age, I still enjoy this TV program for kindergarten kids, Watching with Mother. Reading that, you must be thinking, “Ah, this guy’s just a big kid, after all!” But that’s not the case, in my humble opinion. Sure, we may appear to resemble small children—our fondness for gentle, kind, beautiful things—but we tend to prefer simpler, more straightforward stories, not because of childishness, but because we can more easily guess what’s going to happen next. This allows us to stay more relaxed and more engaged. Plus the simpler stories tend to repeat themselves a lot, so when we get to a familiar scene we can get all excited and make a happy fuss.
People with autism get quite a kick out of repetition. If I was asked how come, my reply would be this: “When you’re in a strange new place, aren’t yourelieved too if you run into a friendly, familiar face?”
What we just don’t do are disputes, bargaining or criticizing others. We’re totally helpless in these scenarios.
A Story I Heard Somewhere
There was once a girl who loved dancing and she wore red shoes. Everybody who knew her thought, That girl will keep dancing until the day she dies, and who knows, maybe the girl thought the same thing herself.
One night, when the whole world was fast asleep, she began dancing. She went:
A twirl and a whirl and a leaping curl,
A-skippetty-skippetty skip-skip-skip,
A-tappetty-tappetty tap-tap-tap,
A-tra-lah-di-dah and a tim tam tom.
The girl was in a state of sheer bliss. How sublime it is to dance!A whole week went by in this manner. Then she thought, I wonder how much longer I can keep this up?By this point she was almost dead on her feet, but all she wished for was to keep on dancing, dancing, dancing.
Then, on the eighth day, this handsome young man appeared. He said to her, “Would you care to dance with me?” With that, the girl stopped dancing. She said, “Thanks, but no. I’ve just discovered something more precious than dancing.” Then, in a small house, they lived happily ever after.
Q42 Why do you memorize train timetables and calendars?
Because it’s fun! We get a real kick out of numbers, us people with autism. Numbers are fixed, unchanging things. The number 1, for example, is only ever, ever the number 1. That simplicity, that clearness, it’s so comforting to us.
Whoever reads any given timetable or calendar, it’s always, always the same. You can easily understand all of them by following the same set of rules. And when it comes to our favorite things, we can memorize these as easily as if they were jumping straight into our heads. Invisible things like human relationships and ambiguous expressions, however, these are difficult for us people with autism to get our heads around.
Perhaps you’re thinking that it’s no major effort for me to write these sentences, but that wouldn’t be true at all. Always lurking at the back of my mind is an anxiety about whether or not I’m perceiving things in the same way that people without autism do. So, via TV, books and just tuning in to the people around me, I’m constantly learning about how ordinary people are supposed to feel in given situations. And whenever I learn something new, I write a short story dealing with the situation in question. This way, with luck, it won’t slip my mind.
Q43 Do you dislike reading and picking apart long sentences?
No, I don’t dislike longer sentences. Whatever else is going on, I’m always hungry to learn about lots of different things. It really gets me down that people just don’t understand how hungry for knowledge people with autism actually are. The problem isn’t that I dislike longer sentences. The problem is that my patience wears out so quickly. I get tired so soon and lose all track of what the sentence was about. I can read simple picture books without much trouble, so when I’m alone, I tend to choose one of these. They are easy to follow and stimulate my imagination, and I never get bored with them.
I want to grow up learning a million things! There must be countless other people with autism who have the same desire, the same attitude. But our problem is, we aren’t capable of studying all by ourselves. To be able to study like other people, we need more time and different strategies and approaches. And those people who help us study, they actually need more patience than we do. They need to understand our eagerness to learn, even though from the outside we may not appear to be keen students. But we are. We, too, want to grow.
Q44 What do you think about running races?
I don’t hate races, but the instant I’m conscious of the need to run fast, I find that I can’t. If I’m just running for fun with my friends, I find I can run as long as I want to—it’s as if I’m making friends with the wind. Sometimes people say that I’m very good at running away, but really it’s just that when someone’s chasing me, I find it both funny and frightening when the chaser is catching up to me. This prompts me to put on a spurt of speed, and I’m off.
The reason I can’t run well once I’m aware of needing to isn’t to do with nerves. My problem is that as soon as I try to run fast, I start thinking about how I ought to be moving my arms and legs, and then my whole body freezes up. And another reason I don’t do well in races is that I don’t really get any pleasure out of beating other people. I agree that it’s right and proper to do the best you can in a race, but this desire to beat everyone else is another matter altogether. So on competitive occasions like school sports days, the pleasure I get just by being there takes over, and I’ll end up running the race with all the urgency of someone skipping his way across a meadow.
Q45 Why do you enjoy going out for walks so much?
My guess is that lots of people with autism like walking, and I wonder if you can work out why. “Because walking makes you feel good?” “Because it’s great being out in the open air?” Both these replies are true, of course, but for me the number one reason is that us people with autism love the greenness of nature. Now you might be thinking, “Oh, is that all?” However, our fondness for nature is, I think, a little bit different from everyone else’s. I’m guessing that what touches you in nature is the beauty of the trees and the flowers and things. But to us people with special needs, nature is as important as our own lives. The reason is that when we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged. However often we’re ignored and pushed away by other people, nature will always give us a good big hug, here inside our hearts.
The greenness of nature is the lives of plants and trees. Green is life. And that’s the reason we love to go out for walks.
Q46 Do you enjoy your free time?
So what do youdo in your free time? Because for people with autism, free time is in fact un-free time. “You can do whatever you feel like doing now,” someone might tell us. But actually, it’s pretty hard for us to find something we do feel like doing, not just like that. If we happen to see some toys or books we’re always playing with or reading, then sure, we’ll pick them up. Thing is, however, that’s not so much what we wantto do as something we cando. Playing with familiar items is comforting because we already know what to do with them, so then, of course, people watching us assume, Aha, so that’s what he likes to do in his free time … What I really want to do, however, is to get stuck in some difficult book or to debate some issue or other.
We are misunderstood, and we’d give anything if only we could be understood properly. People with autism would be suffering breakdowns over this—all the time—if we weren’t holding ourselves in so tightly. Please, understand what we really are, and what we’re going through.
Q47 Would you give us an example of something people with autism really enjoy?
We do take pleasure in one thing that you probably won’t be able to guess. Namely, making friends with nature. The reason we aren’t much good at people skills is that we think too much about what sort of impression we’re making on the other person, or how we should be responding to this or that. But nature is always there at hand to wrap us up, gently: glowing, swaying, bubbling, rustling.
Just by looking at nature, I feel as if I’m being swallowed up into it, and in that moment I get the sensation that my body’s now a speck, a speck from long before I was born, a speck that is melting into nature herself. This sensation is so amazing that I forget that I’m a human being, and one with special needs to boot.
Nature calms me down when I’m furious, and laughs with me when I’m happy. You might think that it’s not possible that nature could be a friend, not really. But human beings are part of the animal kingdom too, and perhaps us people with autism still have some leftover awareness of this, buried somewhere deep down. I’ll always cherish the part of me that thinks of nature as a friend.
The Great Statue of Buddha
When you’ve been on a trip somewhere, have you ever watched someone burst into tears for no obvious reason? Of course there isa reason for it, really, it’s just that the person who’s crying isn’t able to tell you what the reason is. For all you know, the person might be crying for joy, but that might not even occur to you.
Well, it’s much the same for me. The other day I was visiting a town called Kamakura, where there’s this huge statue of Buddha. And when I saw it, I was so deeply moved that I started welling up. It wasn’t just Buddha’s majesty and dignity, it was the sheer weight of history and generations of people’s hopes, prayers and thoughts that broke over me, and I couldn’t stop myself crying. It was as if Buddha himself was saying to me, “All human beings have their hardships to bear, so never swerve away from the path you’re on.”
Everybody has a heart that can be touched by something. Crying isn’t necessarily about sadness or meltdowns or being upset. I’d like you to bear that in mind, if you would.
Q48 Why are you always running off somewhere?
My mind is forever swaying, this way and that. It’s not that I want to go running off, I just can’t help dashing away to whatever place enters my line of sight. It’s really annoying for me too, because people are always telling me off about it. But I don’t know how to stop it.
So I’m not doing all this moving around because it pleases me—it isn’t even all that calming. It’s like being teleported from one place to another without knowing it’s happening. Even if someone tries to prevent me, or if something else gets in the way, it happens anyway. I sort of lose myself for a little while.
So what’s my master plan to fix this problem? I’m constantly battling this impulse to run off and, compared to how it used to be, I’m slowly getting better at controlling it, I think. But I haven’t found a really effective way to fix this problem yet. Jogging and walking refresh my body, at least, and once refreshed, I kind of feel back home inside myself. My sense of gravity is restored, too, and that calms me down.
Q49 Why do you get lost so often?
I’ve already mentioned how I dash off as soon as I spot anything interesting. There’s a different reason for why we get lost so often, however, and I think it’s this: we don’t really know where we ought to be. You could tell us that we ought to follow someone else, or hold their hand, but the fact is that, with or without your suggestion, we’re still going to lose our way.
Simply put, people with autism never, ever feel at ease, wherever we are. Because of this, we wander off—or run away—in search of some location where we dofeel at ease. While we’re on this search, it doesn’t occur to us to consider how or where we’re going to end up. We get swallowed up by the illusion that unless we can find a place to belong, we are going to be all alone in the world. Then eventually we get lost, and have to be escorted back to the place we were at, or the person we were with, before.
But our uneasy, unsettled feeling doesn’t go away. I don’t think we’ll ever be able to reach our Shangri-La, however. I know it exists only in the depths of the forest or at the bottom of the deep blue sea.
Q50 Why do you wander off from home?
Once, when I was a little kid at kindergarten, I wandered off from home and had to be picked up by the police. Back then, in fact, I used to leave home quite regularly and, as I look back from this distance, I can think of several reasons why I did it. It wasn’t because I wanted to go out for a specific purpose, like wanting fresh air. It was because—this is hard to put into words—my body moved because it was lured outside by something there.
As I was walking farther from home, I didn’t feel any fear or anxiety. It came down to this: if I didn’t go outside, then I would cease to exist. Why? I can’t say, but I hadto keep walking, on and on and on. Turning back was not permitted, because roads never come to an end. Roads speak to us people with autism, and invite us onward. There’s not much logic in any of this, I know. Until someone brings us back home, we don’t know what we’ve done, and then we’re as shocked as anyone.
I stopped wandering off from home on the day I very nearly got mowed down by a car, because the fear of it made a deep impact on my memory. So when something drastic enough happens, I think we can rein in this habit of wandering off. Meanwhile, please keep an eye out for us …
Q51 Why do you repeat certain actions again and again?
The reason people with autism repeat actions isn’t simply because they enjoy what they’re doing. Watching us, some people can get shocked, as if we were possessed. However much you like doing something, it would normally be impossible to keep doing it as often as we do, right? But the repetition doesn’t come from our own free will. It’s more like our brains keep sending out the same order, time and time again. Then, while we’re repeating the action, we get to feel really good and incredibly comforted.
From our standpoint, I feel a deep envy of people who can know what their own minds are saying, and who have the power to act accordingly. My brain is always sending me off on little missions, whether or not I want to do them. And if I don’t obey, then I have to fight a feeling of horror. Really, it’s like I’m being pushed over the brink into a kind of Hell.
For people with autism, living itself is a battle.
Q52 Why don’t you do what you’re supposed to do, even after being told a million times?
Kids with autism do what we’re not supposed to do again and again, however many times you’ve told us not to. We understand what you’re telling us okay, but somehow we just repeat the sequence. This happens to me, too, and I’ve thought about how the sequence gets imprinted. First I do some action or other that I’m not allowed to; then something else happens as a result; and then I get told off for it; and last, my impulse to re-create this sequence trumps the knowledge that I’ve been told not to do it, and I end up doing it again. The next thing I know, I feel a sort of electrical buzz in my brain, which is very pleasant—no other sensation is quite the same. Perhaps the closest thing is watching your very favorite scene on a DVD, looping on auto-repeat, over and over.
Still, we shouldn’t do what we shouldn’t do. How, as thinking beings, can we break out of this loop? This is a big project. I work hard to solve the problem, but this work costs so much energy. Maintaining this grip on myself is really, really, really tough. It’s at these times that we need your help with patience, guidance and love. Of course we want you to stop us from doing what we’re not supposed to do, but we also want you to understand what we’re going through at these times.
Q53 Why are you obsessive about certain things?
We don’t obsess over certain things because we like it, or because we want to. People with autism obsess over certain things because we’d go crazy if we didn’t. By performing whatever action it is, we feel a bit soothed and calmed down. But then whenever someone tells me off for doing the action, or even prevents me from repeating it, I feel utterly miserable. I never actually wanted to do it in the first place, and now I end up hating myself even more for not being able to control my own actions. Whenever our obsessive behavior is bothering other people, please stop us right away, whatever way you can. The person who’s suffering the most is the one who’s causing all the headaches for everyone else—that is, the one with the autism. Even though it looks as if we’re frolicking about and having the best time, inside we’re aching and hurting because we know we don’t even have control over what our own bodies are doing.
All that said, when our obsessive behavior isn’t actually bothering anyone, I’d ask you just to keep a quiet eye on us. It won’t last forever. One fine day, however hard we have tried to will ourselves to stop before, the obsessive action suddenly stops itself, without warning—like, “How come?” Somehow our brain flashes up a GAME OVER signal. The sign works like when you’ve just guzzled down an entire bag of sweets. The need to obsess about whatever it was is all used up. When that sign appears, I feel set free, like someone who can finally put aside all of last night’s dreams.
The problem is, how to help people with autism stop their obsessive actions in cases when they arebothering others? To you who are helping us, I’d say this: please handle and approach our behavioral issues with a strong faith that they are definitely going to pass, at some point in the future. When we are stopped from doing what we want, we may well make a terrible song and dance about it, but in time we’ll get used to the idea. And until we reach that point, we’d like you to stick with it, and stick with us.
The Black Crow and the White Dove
There was once a black crow who liked a certain song called “The Seven Little Crows,” which began, Crow, Crow, Crow, why do you caw?Except in this song, crows in stories are bullies and villains who everyone hates. This troubled the black crow, who would ask himself, How come it’s always the crows who are the bad guys?
One day, a white dove who had lost her way met the black crow. She asked, “Where does this path go?” Then the white dove stared down at the ground, looking lonely.
The black crow wondered what was wrong, and asked, “What’s the matter?”
On the point of tears, the white dove said, “I’ve been searching for the path to happiness for a long, long time, but I still can’t find it anywhere. And I’m supposed to be the bird of peace, too …”
The black crow was surprised to learn that even a bird as beautiful and as loved by everyone as the white dove nonetheless had deep problems to worry about. His answer was this: “But all paths are one connected path.”
The white dove looked taken aback by this unexpected answer. But after a time, she smiled. “How about that? So the path I’ve been searching for all this time is the path I am already on.” In excellent spirits, the white dove flew off, up into the blue sky. Then the black crow, too, turned his head skyward, then flapped his wings vigorously, and away he flew. And the black crow looked no less perfect against the deep blue than the white dove.
Q54 Why do you need cues and prompts?
People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we won’t actually start drinking until someone’s said, “Enjoy” or “Go ahead and drink, then.” Or even after the person with autism has announced, “Right, I’ll hang the laundry now,” he won’t get started until someone has said back, “Okay, that’s great.”
I don’t really know why some people with autism need these cues, but I do know that I’m one of them. Since we already know what we’ll be doing next, surely we should just be able to get on with it unprompted, right? Yes, I think so too! But the fact is, doing the action without the cue can be really, really tough. In the same way as you don’t walk across the street until the light turns green, I can’t “switch on” the next action until my brain receives the right prompt. Doing the next action without obeying “the prompt rule” is terrifying. It’s enough to make me lose the plot completely.
Once we’re through the terrifying phase, we can, bit by bit, become used to the idea that doing things without the prompt is possible. But getting to that point isn’t something we can do alone—as you can tell, by the mega-fuss we make every time. We cry, we scream, we hit out and break things. But still, we don’twant you to give up on us. Please, keep battling alongside us. We are the ones who are suffering the most in these scenes, and badly, badly want to free ourselves from our own chains.
Q55 Why can you never stay still?
My body’s always moving about. I just can’t stay still. When I’m not moving, it feels as if my soul is detaching itself from my body, and this makes me so jumpy and scared that I can’t stay where I am. I’m always on the lookout for an exit. But even though I’m forever wanting to be someplace else, I can never actually find my way there. I’m always struggling inside my own body, and staying still really hammers it home that I’m trapped here. But as long as I’m in a state of motion, I’m able to relax a little bit.
Everyone tells people with autism, “Calm down, stop fidgeting, stay still,” when we’re busy moving around. But because I feel so much more relaxed when I ammoving, it took me quite a while to work out exactly what their “calm down” even meant. Finally, I’ve come to understand that there are times when I’m not supposed to be moving about. The only way we can learn to do this is by practicing, a little at a time.
Q56 Do you need visual schedules?
I understand that any plan is only a plan, and is never definite, but I just cannot take it when a fixed arrangement doesn’t proceed as per the visual schedule. I understand that changes can’t always be avoided, but my brain shouts back, No way, that’s not acceptable. So speaking for myself, I’m not a big fan of having visual schedules around the place. People with autism may look happier with pictures and diagrams of where we’re supposed to be and when, but in fact we end up being restricted by them. They make us feel like robots, with each and every action preprogrammed. What I’d suggest is that instead of showing us visual schedules, you talk through the day’s plan with us, verbally and beforehand. Visual schedules create such a strong impression on us that if a change occurs, we get flustered and panicky.
Observing that the new change can also be shown on the schedule is beside the point, I’m afraid. The message I want to get across here is: please don’t use visual things like pictures on our schedules, because then the activities on the schedules, and their times and timings, get imprinted too vividly onto our memories. And when that happens, we end up stressing ourselves over whether what we’re doing now is or isn’t matching up with what was on the schedule. In my case, I end up checking the time so often that I’m no longer able to enjoy what I’m doing.
People who don’t live with autism often think that the rest of us won’t be able to understand the plan for the day just by listening. But give it a try, and although we might ask you the same questions over and over, we will get the hang of it, and ask you less and less. Sure, this will take time, but I think it’s easier for us in the long run. Of course, when it comes to explaining the order that you do certain actions in, or instructions about how to make such-and-such an object, visual aids, like pictures, can help us a lot. But being shown photos of places we’re going to visit on an upcoming school trip, for example, can spoil our fun.
Q57 What causes panic attacks and meltdowns?
I don’t know if you can understand this one. Panic attacks can be triggered by many things, but even if you set up an ideal environment that gets rid of all the usual causes for a given person, we would stillsuffer panic attacks now and then.
One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown.
When this is happening to us, please just let us cry, or yell, and get it all out. Stay close by and keep a gentle eye on us, and while we’re swept up in our torment, please stop us from hurting ourselves or others.
Q58 What are your thoughts on autism itself?
I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists.
Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure.
Foreword
I wrote this story in the hope that it will help you to understand how painful it is when you can’t express yourself to the people you love. If this story connects with your heart in some way, then I believe you’ll be able to connect back to the hearts of people with autism too.
I’m Right Here
Shun used to think that he knew himself very well, but from that day on he was no longer sure. Everyone’s staring at my face. The early evening sky was ominous with orange clouds bound by ash-grey. Why are they all staring at me?When Shun had emerged from his local supermarket, an old man came over and asked, “What are you doing here?” Shun had never met him before. He wore a red hat pulled down low over his eyes, a white T-shirt and black knee-length shorts, even though it was winter. Never talk to strangers, Shun had told himself, and started hurrying for home. And that was the moment when Shun noticed– everyone’s staring at my face. His first thought was that everyone was worrying about him, but no, it wasn’t that kind of look … How to put it? Not a surprised look, not a searching gaze … more of an icy, heart-chilling stare. Whatever it was, Shun ran off home.
“I’m back!”
