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 you do 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 want to do as something we can do. 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 is a 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 do feel 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 had to 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 allowe
d 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 are bothering 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’t want 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 am moving, 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 longe
r 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 still suffer 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.