The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism

by Naoki Higashida

Naoki Higashida reiterates repeatedly that no, he values the company of other people very much. But because communication is so fraught with problems, a person with autism tends to end up alone in a corner, where people then see him or her and think, Aha, classic sign of autism, that.

The conclusion is that both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism, its harsh lockdown on self-expression and society’s near-pristine ignorance about what’s happening inside autistic heads.

Often, while I was learning this method, I’d feel utterly beaten. But finally I arrived at the point where I could indicate the letters by myself. What kept me hammering away at it was the thought that to live my life as a human being, nothing is more important than being able to express myself.

My memory, however, is more like a pool of dots. I’m always “picking up” these dots—by asking my questions—so I can arrive back at the memory that the dots represent.

Firing the question back is a way of sifting through our memories to pick up clues about what the questioner is asking. We understand the question okay, but we can’t answer it until we fish out the right “memory picture” in our heads.

“How many times do I have to tell you?!” Us people with autism hear that all the time. Me, I’m always being told off for doing the same old things. It may look as if we’re being bad out of naughtiness, but honestly, we’re not. When we’re being told off, we feel terrible that yet again we’ve done what we’ve been told not to. But when the chance comes once more, we’ve pretty much forgotten about the last time and we just get carried away yet again. It’s as if something that isn’t us is urging us on. You must be thinking: “Is he never going to learn?” We know we’re making you sad and upset, but it’s as if we don’t have any say in it, I’m afraid, and that’s the way it is. But please, whatever you do, don’t give up on us. We need your help.

Children with autism are also growing and developing every single day, yet we are forever being treated like babies. I guess this is because we seem to act younger than our true age, but whenever anyone treats me as if I’m still a toddler, it really hacks me off. I don’t know whether people think I’ll understand baby-language better, or whether they think I just prefer being spoken to in that way. I’m not asking you to deliberately use difficult language when you talk to people with autism—just that you treat us as we are, according to our age. Every single time I’m talked down to, I end up feeling utterly miserable—as if I’m being given zero chance of a decent future. True compassion is about not bruising the other person’s self-respect. That’s what I think, anyway.

Some of you may think we read aloud with a strange intonation, too. This is because we can’t read the story and imagine the story at the same time. Just the act of reading costs us a lot of effort—sorting out the words and somehow voicing them is already a very tall order. More practice will help, however. Please never laugh at us, even when we’re doing a less than great job.

The reason we need so much time isn’t necessarily because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads.

What we’re actually looking at is the other person’s voice. Voices may not be visible things, but we’re trying to listen to the other person with all of our sense organs. When we’re fully focused on working out what the heck it is you’re saying, our sense of sight sort of zones out. If you can’t make out what you’re seeing, it’s the same as not seeing anything at all.

On why he doesn’t make eye contact

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. This is 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.

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.

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.

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.

The people who are looking after us may say, “Minding these kids is really hard 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.

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.

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.

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.

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.”

It might be scorching hot, and we know it’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.

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.

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 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 you relieved too if you run into a friendly, familiar face?”

the number one reason is that us people with autism love the greenness of nature.

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.

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.

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.

Whenever our obsessive behavior is bothering other people, please stop us right away, whatever way you can.

All that said, when our obsessive behavior isn’t actually bothering anyone, I’d ask you just to keep a quiet eye on us.

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.

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.

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.

autism isn’t a fixed point on a ruler from mild to severe, that autism’s multiplex nature pretty much dooms any attempts to quantify it from the outset.