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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What’s bothered me for a long time is this idea people have that so long as we’re keeping eye contact while they’re talking to us, that alone means we’re taking in every word. Ha! If only that was all it took, my disability would have been cured a long, long time ago …
Q12 You seem to dislike holding hands with people.
It’s not that we don’t like holding hands, it’s just that, if we happen to spot something interesting, we can’t help but dash off and let go of the hand we were holding. I don’t even remember letting it go until I hear the other person say, “Huh—it looks like he doesn’t want to hold my hand.”
That really used to depress me. But because I can’t explain to the person why I let go of his or her hand, and since I do in fact find it hard to keep holding the hand for long, there’s not much I can do about the misunderstanding.
It’s really not a matter of whose hand I’m holding, or even of the act of holding hands itself. It’s this impulse kids with autism have to dart off to anything that looks remotely interesting: this is what we have to tackle.
Q13 Do you prefer to be on your own?
“Ah, don’t worry about him—he’d rather be on his own.”
How many times have we heard this? I can’t believe that anyone born as a human being really wants to be left all on their own, not really. No, for people with autism, what we’re anxious about is that we’re causing trouble for the rest of you, or even getting on your nerves. Thisis why it’s hard for us to stay around other people. This is why we often end up being left on our own.
The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold-shoulder treatment.
Q14 Why do you ignore us when we’re talking to you?
If someone’s talking to me from somewhere far off, I don’t notice. You’re probably thinking, “Same here,” yes? A major headache for me, however, is that even when someone’s right here in front of me, I still don’t notice when they’re talking to me.
“Not noticing,” however, is not the same as “deliberately ignoring.” But often people assume I must be arrogant or “retarded.” People around me always make me realize that I’m being spoken to by saying things like, “Say hello back, then, Naoki,” or, “What do you say, then?” So whenever that happens I just repeat what I’ve been told to say, like a mynah bird learning a new word. Even though I feel guilty toward the person who has spoken to me, I can’t even apologize, so I end up feeling miserable and ashamed that I can’t manage a proper human relationship.
A person who’s looking at a mountain far away doesn’t notice the prettiness of a dandelion in front of them. A person who’s looking at a dandelion in front of them doesn’t see the beauty of a mountain far away. To us, people’s voices are a bit like that. It’s very difficult for us to know someone’s there and that they’re talking to us, just by their voice.
So it would help us a great deal if you could just use our names first to get our attention, before you start talking to us.
Q15 Why are your facial expressions so limited?
Our expressions only seem limited because you think differently from us. It’s troubled me for quite a while that I can’t laugh along when everyone else is laughing. For a person with autism, the idea of what’s fun or funny doesn’t match yours, I guess. More than that, there are times when situations feel downright hopeless to us—our daily lives are so full of tough stuff to tackle. At other times, if we’re surprised, or feel tense, or embarrassed, we just freeze up and become unable to show any emotion whatsoever.
Criticizing people, winding them up, making idiots of them or fooling them doesn’t make people with autism laugh. What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh. This generally happens when there’s nobody watching us. And at night, on our own, we might burst out laughing underneath the duvet, or roar with laughter in an empty room … when we don’t need to think about other people or anything else, that’s when we wear our natural expressions.
Q16 Is it true that you hate being touched?
Personally, I have no particular problem with physical contact, but sure, some people with autism can’t stand being hugged or touched. I don’t know why, to be honest—I guess it just makes them feel uneasy. Even the way we adjust our clothing to match the season, putting on more clothes in winter and fewer in summertime, this can be a very big deal for people with tactile issues. Acting accordingly as situations change is a tough call.
More generally, for a person with autism, being touched by someone else means that the toucher is exercising control over the person’s body, which not even its owner can control properly. It’s as if we lose who we are. Think about it—that’s terrifying!
There’s also the dread that by being touched our thoughts will become visible. And if that happened, the other person would reallystart worrying about us. You see? We put up a barricade around ourselves to keep people out.
Q17 Why do you wave goodbye with your palm facing yourself?
When I was small, I used to wave goodbye with my palm facing inward when I was told, “Wave bye-bye!” I found simple gym exercises and dancing quite impossible. The reason is that imitating movement is difficult for people with autism. Because we don’t know our own body parts so well, moving those parts of the body we can track with our eyes is our first step toward imitating movement properly.
I never understood people when they told me that I was waving goodbye the wrong way around, until one day I saw myself in a full-length mirror. That was when I realized—I was waving goodbye to myself!
Slip Sliding Away
“I can run faster than any of us!” said the Hare, boinging away.
“But we had a race a long time ago to settle this and I won,” said the Tortoise, crossly. “I’m the fastest.”
None of the other animals was at all interested. “Ah, who cares?”
But the Hare insisted on having another race, so the Tortoise finally gave in and turned up at the starting line.
The race between the Hare and the Tortoise was about to start.
“Ready, set, go!”
The Hare dashed away at terrific speed.
The Tortoise slipped and flipped over onto his back, at which all the other animals ran up to the Tortoise to see if he was all right: “Poor you, are you okay? You’d better go home and rest.”
And so they all carried the Tortoise back to his house.
The Hare reached the finish line.
Nobody was waiting but himself.
Q18 When you’re on one of your highs, what’s going through your mind?
Sometimes people with autism start laughing like a hyena or appear to be having enormous fun on their own without any obvious reason for it. You must be wondering, What on Earth’s gotten into him?
At times like these, we’re having “imaginings.” Or not quite imaginings, but we experience pictures or scenes in our minds that pop up out of nowhere. Maybe it’s the memory of something that made us laugh, or maybe it’s a page from a book we read.
This might be hard for you to understand. But try to see these “highs” as a stronger version of those times when you remember something funny and can’t help but chuckle about it.
Q19 What are your flashback memories like?
We do remember what we did, when, where, who we did it with and things like this, but these memories are all scattershot and never connected in the right order. The trouble with scattered memories is that sometimes they replay themselves in my head as if they had only just taken place—and when this happens, the emotions I felt originally all come rushing back to me, like a sudden storm. This is a flashback memory.
I know I have lots of pleasant memories, but my flashback memories are always bad ones, and from out of the blue I get incredibly distressed, burst into tears or just start panicking. Never mind that it’s a memory from ages ago—the same helpless feeling I had then overflows and floods out and it just won’t stop.
So when this happens, just let us have a good cry, and then we can get back onto our feet. Maybe the racket we make will get on your nerves a bit, but please try to understand what we’re going through, and stay with us.
Q20 Why do you make a huge fuss over tiny mistakes?
When I see I’ve made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can’t think straight about anything anymore. However tiny the mistake, for me it’s a massive deal, as if Heaven and Earth have been turned upside down. For example, when I pour water into a glass, I can’t stand it if I spill even a drop.
It must be hard for you to understand why this could make me so unhappy. And even to me, I know really that it’s not such a big deal. But it’s almost impossible for me to keep my emotions contained. Once I’ve made a mistake, the fact of it starts rushing toward me like a tsunami. And then, like trees or houses being destroyed by the tsunami, Iget destroyed by the shock. I get swallowed up in the moment, and can’t tell the right response from the wrong response. All I know is that I have to get out of the situation as soon as I can, so I don’t drown. To get away, I’ll do anything. Crying, screaming and throwing things, hitting out even …
Finally, finally, I’ll calm down and come back to myself. Then I see no sign of the tsunami attack—only the wreckage I’ve made. And when I see that, I hate myself. I just hate myself.
Q21 Why don’t you do what you’re told right away?
There are times when I can’t do what I want to, or what I have to. It doesn’t mean I don’t want to do it. I just can’t get it all together, somehow. Even performing one straightforward task, I can’t get started as smoothly as you can. Here’s how I have to go about things:
1. I think about what I’m going to do.
2. I visualize how I’m going to do it.
3. I encourage myself to get going.
How smoothly I can do the job depends on how smoothly this process goes.
There are times when I can’t act, even though I really, badly want to. This is when my body is beyond my control. I don’t mean I’m ill or anything. It’s as if my whole body, except for my soul, feels as if it belongs to somebody else and I have zero control over it. I don’t think you could ever imagine what an agonizing sensation this is.
You can’t always tell just by looking at people with autism, but we never really feel that our bodies are our own. They’re always acting up and going outside our control. Stuck inside them, we’re struggling so hard to make them do what we tell them.
Q22 Do you hate it when we make you do things?
Us kids with autism would like you to watch out for us—meaning, “Please never give up on us.” The reason I say “watch out for us” is that we can be made stronger just by the fact you’re watching.
Just going by how we respond, it’s difficult for you to tell if we’ve understood what you’re saying or not. And often we still can’t do something however often you’ve shown us how to do it.
That’s just the way we are. On our own we simply don’t know how to get things done the same way you do them. But, like everyone else, we want to do the best we possibly can. When we sense you’ve given up on us, it makes us feel miserable. So please keep helping us, through to the end.
Q23 What’s the worst thing about having autism?
You never notice. Really, you have no idea quite how miserable we are. The people who are looking after us may say, “Minding these kids is reallyhard work, you know!” but for us—who are always causing the problems and are useless at pretty much everything we try to do—you can’t begin to imagine how miserable and sad we get.
Whenever we’ve done something wrong, we get told off or laughed at, without even being able to apologize, and we end up hating ourselves and despairing about our own lives, again and again and again. It’s impossible not to wonder why we were born into this world as human beings at all.
But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have—and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.
Q24 Would you like to be “normal”?
What would we do if there was some way that we could be “normal”? Well, I bet the people around us—our parents and teachers—would be ecstatic with joy and say, “Hallelujah! We’ll change them back to normal right now!” And for ages and ages I badly wanted to be normal, too. Living with special needs is so depressing and so relentless; I used to think it’d be the best thing if I could just live my life like a normal person.
But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am. Why have I come around to thinking this way?
To give the short version, I’ve learned that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal—so we can’t know for sure what your “normal” is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.
Earthling and Autisman
I was traveling with my family to Hokkaido by airplane. It was the first time I’d flown for many years, and I was surprised to find that the sensation of gravity pulling at my body was really pleasant. I hadn’t noticed this the time I’d flown before, because I was still a little kid back then. Anyway, I made up this very short story …
Once upon a time on a small, green, quiet planet.
Autisman:So—welcome to my home world.
Earthling:Don’t you feel weighed down? It feels as if I’ve got weights strapped to my arms and legs.
Autisman:Ah, but on your planet, Ialways feel as if I’m swimming around in space, weightlessly.
Earthling:Okay. Now I understand you. I really understand.
If only there was a planet somewhere with a gravitational pull perfect for people with autism, then we’d be able to move around freely.
Q25 What’s the reason you jump?
What do you think I’m feeling when I’m jumping up and down clapping my hands? I bet you think I’m not really feeling anything much beyond the manic glee all over my face.
But when I’m jumping, it’s as if my feelings are going upward to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I’m jumping, I can feel my body parts really well, too—my bounding legs and my clapping hands—and that makes me feel so, so good.
So that’s one reason why I jump, and recently I’ve noticed another reason. People with autism react physically to feelings of happiness and sadness. So when something happens that affects me emotionally, my body seizes up as if struck by lightning.
“Seizing up” doesn’t mean that my muscles literally get stiff and immobile—rather, it means that I’m not free to move the way I want. So by jumping up and down, it’s as if I’m shaking loose the ropes that are tying up my body. When I jump, I feel lighter, and I think the reason my body is drawn skyward is that the motion makes me want to change into a bird and fly off to some faraway place.
But constrained both by ourselves and by the people around us, all we can do is tweet-tweet, flap our wings and hop around in a cage. Ah, if only I could just flap my wings and soar away, into the big blue yonder, over the hills and far away!
Q26 Why do you write letters in the air?
People with autism often write letters in the air. Are you trying to tell us something?or Are you thinking about something?you must be wondering, I guess. In my case, I’m writing to confirm what I want to remember. As I write, I’m recalling what I’ve seen—not as scenes, but as letters, signs and symbols. Letters, symbols and signs are my closest allies because they never change. They just stay as they are, fixed in my memory. And whenever we’re lonely or happy, in the same way that you might half hum a song to yourself, we summon up our letters. When I’m writing them out, I can forget everything else. I’m not alone when I’m with letters. Letters and symbols are much easier for us to grasp than spoken words, and we can be with them whenever we want.
Q27 Why do people with autism often cup their ears? Is it when there’s a lot of noise?
There are certain noises you don’t notice but that really get to us. The problem here is that you don’t understand how these noises affect us. It’s not quite that the noises grate on our nerves. It’s more to do with a fear that if we keep listening, we’ll lose all sense of where we are. At times like these, it feels as if the ground is shaking and the landscape around us starts coming to get us, and it’s absolutely terrifying. So cupping our ears is a measure we take to protect ourselves and get back our grip on where we are.
The noises that get to people with autism vary from person to person. I don’t know how we’d cope if we couldn’t cup our ears. Me too, I cup my ears sometimes, though I’ve gradually gotten used to the noises by pressing my hands over my ears less and less heavily. Some people can overcome the problem by slowly becoming accustomed to the noises, I guess. What matters most is that we learn to feel safe and secure even when the noises strike us.
Q28 Why do you move your arms and legs about in that awkward way?
In my gym class, the teacher tells me to do things like “Stretch your arms!” and “Bend at the knees!” But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail.
I think the reason why some kids with autism try to get hold of an object by “borrowing” someone else’s hand is that they can’t tell how far they need to extend their own arms to reach the object. They’re not too sure how to actually grab the object either, because we have problems perceiving and gauging distances. By constant practice, however, we should be able to overcome this difficulty.
That said, I still can’t even tell when I’ve stepped on someone’s foot or jostled someone out of my way. So something connected with my sense of touch might be miswired too.
Q29 Why do you do things the rest of us don’t? Do your senses work differently in some way?
“Why won’t you wear shoes?” “Why will you only wear half-length sleeves?” “Why do you always shave off or pluck out your body hair? Doesn’t it hurt?” Every time us people with autism do something that other people wouldn’t, it must make you wonder why. Do people with autism possess different senses? Or do these actions just give us some sort of kick?
To my mind, both answers are barking up the wrong tree. The reason could be that we’ve gotten into such a state that if we don’tdo these actions, we’ll go to pieces completely. If you talk about someone’s “senses working differently,” it means that the person’s nervous system is somehow malfunctioning. But I believe that in our case, there’s nothing wrong with us at a nerve level. Instead, it’s actually our emotions that trigger the abnormal reactions. It’s only natural for anyone stuck in a bad place to try to get out of it, and it’s my own despair that causes me to misread the messages my senses are sending me. If all of my attention gets focused on one area of my body, it’s as if all of my body’s energy is concentrated there too, which is when my senses all report that something in that area is going badly wrong.
If a person without autism is going through a hard time, he or she can talk it over with someone, or make a ruckus about it. But in our case, that’s not an option—we can never make ourselves understood. Even when we’re in the middle of a panic attack, people either don’t get what’s happening to us, or else they just tell us to stop crying. My guess is that the despair we’re feeling has nowhere to go and fills up our entire bodies, making our senses more and more confused.
Q30 Why are you too sensitive or insensitive to pain?
Among people with autism, there are some who make a huge fuss when they have their hair or nails trimmed, even though it shouldn’t hurt at all. At the same time, there are people who stay very calm and collected even when they’ve got an injury that’s obviously painful.
I don’t think this is all to do with nerves and nerve endings. It’s more a matter of “inner pain” expressing itself via the body. When memories suddenly come to people, we experience a flashback—but in the case of people with autism, memories are not stored in a clear order. For those of us who are disturbed by having their hair and nails trimmed, somehow their negative memories are probably connected to the action.
A normal person might say, “Oh, he’s never liked having his hair cut or his nails trimmed, ever since he was small, and we’ve no idea why.” But the thing is, the memory of a person with autism isn’t like a number-scale from which you pick out the recollection you’re after: it’s more like a jigsaw puzzle, where if even just one piece is misinserted, the entire puzzle becomes impossible to complete. What’s more, a single piece that doesn’t belong there can mess up all the surrounding memories as well. So it’s not necessarily physical pain that’s making us cry at all—quite possibly, it’s memory.
As for people who don’t show any signs of pain, my guess is that they’re unable to keep those signs on display. I think it’s very difficult for you to properly get your heads around just how hard it is for us to express what we’re feeling. For us, dealing with the pain by treating it as if it’s already gone is actually easier than letting other people know we are in pain.
Normal people think we’re highly dependent and can’t live without ongoing support, but in fact there are times when we’re stoic heroes.
Q31 Why are you so picky about what you eat?
Some people with autism keep to a very limited diet, it’s true. I don’t really have this problem myself, but to some degree I can understand where they’re coming from, I think. We do this business called eating three times a day, but for some people having to eat different meals each time can be a major headache. Each type of food has its distinct taste, color and shape. Usually, these differences are what make eating a pleasure, but for some people with autism, only those foodstuffs they can already think of as food have any taste. Everything else is about as appetizing as toy food you might be served at a little kid’s “pretend tea-time.”
So why do these people experience new food this way? You could say, “Because their sense of taste is all messed up” and be done with it. But couldn’t you also say that they just need more time than the average person to come to appreciate unknown types of food? Even if they’d be happy sticking with only those foods they’re used to eating, in my opinion meals aren’t just about nutrition—meals are also about finding joy in life. Eating is living, and picky eaters should definitely be nudged toward trying different foods little by little. That’s what I reckon, anyway.
Q32 When you look at something, what do you see first?
So how do people with autism see the world, exactly? We, and only we, can ever know the answer to that one! Sometimes I actually pity you for not being able to see the beauty of the world in the same way we do. Really, our vision of the world can be incredible, just incredible …
You might reply, “But the eyes we all use to look at things work the same way, right?” Fair enough, you may be looking at the exact same things as us, but howwe perceive them appears to be different. When you see an object, it seems that you see it as an entire thing first, and only afterward do its details follow on. But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus. What part of the whole image captures our eyes first depends on a number of things. When a color is vivid or a shape is eye-catching, then that’s the detail that claims our attention, and then our hearts kind of drown in it, and we can’t concentrate on anything else.
Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we’re not with anyone, but we’re always in the company of friends.
Q33 Is it difficult for you to choose appropriate clothing?
Whether it’s hot or whether it’s cold, I always have a hard time choosing the right clothing, as well as putting extra layers on or peeling them off accordingly. Some people with autism keep wearing exactly the same type of clothes all through the year, in fact. What’s the deal here? What’s so tricky about putting on or taking off clothes as you need to?
Well—search me. It might be scorching hot, and we knowit’s scorching hot, but it simply might not occur to a person with autism that taking off a layer is a good idea. It’s not that we don’t understand the logic—it’s just that we somehow forget. We forget what we’re wearing, and how to make ourselves cooler.
I can mop the sweat off my face with my handkerchief, at least—I’m used to doing this now—but adjusting my clothing is a taller order because the situation is often changing. So I can well sympathize with those people with autism who prefer to wear the same clothes day in, day out. Clothes are like an extension of our bodies, an outer skin, and so the day-in, day-outers find it reassuring to stick to the same outfit. We feel obliged to do everything we can to protect ourselves against uncertainty, and wearing comfy clothes we like is one way of doing this.
Q34 Do you have a sense of time?
Time is a continuous thing with no clear boundaries, which is why it’s so confusing for people with autism. Perhaps you’re puzzled about why time intervals and the speed of time are so hard for us to gauge, and why time seems such slippery stuff for people with autism.
For us, time is as difficult to grasp as picturing a country we’ve never been to. You can’t capture the passing of time on a piece of paper. The hands of a clock may show that some time has passed, but the fact that we can’t actually feelit makes us nervous.
Because I have autism, I know all about this and I feel it myself—believe me, this is scary stuff. We’re anxious about what kind of condition we’ll be in at a future point, and what problems we’ll trigger. People who have effortless control over themselves and their bodies never really experience this fear.
For us, one second is infinitely long—yet twenty-four hours can hurtle by in a flash. Time can only be fixed in our memories in the form of visual scenes. For this reason there’s not a lot of difference between one second and twenty-four hours. Exactly what the next moment has in store for us never stops being a big, big worry.
Q35 Why are your sleep patterns all messed up?
Quite a few people with autism find it hard to fall asleep at night. When I was little there were times when I couldn’t fall asleep either, even when it got really late. This seems strange, because we human beings aren’t nocturnal animals, right? But now I rarely have this problem. The cure might simply be time. People who can’t sleep may appear to be okay on the outside, while inside they’re exhausted.
I don’t really know what causes sleeping disorders, so all I want to ask you to do here is, if your autistic child isn’t going to sleep at a decent hour, please don’t tell them off—even if it goes on night after night after night.
Never-ending Summer
People with autism can be restless and fidgety all the time, almost to the point of it looking comical. It’s as if it’s summer for us the whole year round. Most people look pretty relaxed when they’re not doing anything in particular, but we’re always zooming off madly like a kid who’s late for school. We’re like cicadas who’ll miss the summer unless we hurry, hurry, hurry. Bzzzzzz, bzzzzzz, crick-crick, crick-crick, chirrrrrr … We cry our hearts out, shout our heads off, and never rest in our battle against time.
As autumn comes around the year’s corner, the cicadas’ lives come to an end. Human beings still have plenty of time in store, but we who have autism, who are semidetached from the flow of time, we are always uneasy from sunrise to sunset. Just like the cicadas, we cry out, we call out.
Q36 Why do you like spinning?
Us people with autism often enjoy spinning ourselves around and around. We like spinning whatever object comes to hand, for that matter. Can you understand what’s so much fun about spinning?
Everyday scenery doesn’t rotate, so things that do spin simply fascinate us. Just watching spinning things fills us with a sort of everlasting bliss—for the time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there’s something beautiful about that.
Q37 Why do you flap your fingers and hands in front of your face?
Flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant, filtered fashion. Light that reaches us like this feels soft and gentle, like moonlight. But “unfiltered” direct light sort of “needles” its way into the eyeballs of people with autism in sharp straight lines, so we see too many points of light. This actually makes our eyes hurt.
This said, we couldn’t get by without light. Light wipes away our tears, and when we’re bathed in light, we’re happy. Perhaps we just love how its particles pour down on us. Light particles somehow console us. I admit this is something I can’t quite explain using logic.
