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

by Naoki Higashida

Where to turn to next? Books. (You’ll have started already, because the first reaction of friends and family desperate to help is to send clippings, Web links and literature, however tangential to your own situation.) Special Needs publishing is a jungle. Many How to Help Your Autistic Child manuals have a doctrinaire spin, with generous helpings of © and ™. They may contain usable ideas, but reading them can feel depressingly like being asked to join a political party or a church. The more academic texts are denser, more cross-referenced and rich in pedagogy and abbreviations. Of course it’s good that academics are researching the field, but often the gap between the theory and what’s unraveling on your kitchen floor is too wide to bridge.

The book goes much further than providing information, however: it offers up proof that locked inside the helpless-seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone’s. During the 24/7 grind of being a carer, it’s all too easy to forget the fact that the person you’re doing so much for is, and is obliged to be, more resourceful than you in many respects. As the months turn into years “forgetting” can become “disbelieving,” and this lack of faith makes both the carer and the cared-for vulnerable to negativities. Naoki Higashida’s gift is to restore faith: by demonstrating intellectual acuity and spiritual curiosity; by analysis of his environment and his condition; and by a puckish sense of humor and a drive to write fiction. We’re not talking signs or hints of these mental propensities: they’re already here, in the book which (I hope) you’re about to read.

The Reason I Jump unwittingly discredits the doomiest item of received wisdom about autism—that people with autism are antisocial loners who lack empathy with others. 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. Similarly, if people with autism are oblivious to other people’s feelings, how could Naoki testify that the most unendurable aspect of autism is the knowledge that he makes other people stressed out and depressed? How could he write a story (entitled “I’m Right Here” and included at the end of the book) boasting characters who display a range of emotions and a plot designed to tweak the tear glands? Like all storytelling mammals, Naoki is anticipating his audience’s emotions and manipulating them. That is empathy. 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.

Q3Why do you ask the same questions over and over? It’s true; I always ask the same questions. “What day is it today?” or “Is it a school day tomorrow?” Simple matters like these, I ask again and again. I don’t repeat my question because I didn’t understand—in fact, even as I’m asking, I know I do understand. The reason why? Because I very quickly forget what it is I’ve just heard. Inside my head there really isn’t such a big difference between what I was told just now, and what I heard a long, long time ago. So I do understand things, but my way of remembering them works differently from everyone else’s. I imagine a normal person’s memory is arranged continuously, like a line. 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. But there’s another reason for our repeated questioning: it lets us play with words. We aren’t good at conversation, and however hard we try, we’ll never speak as effortlessly as you do. The big exception, however, is words or phrases we’re very familiar with. Repeating these is great fun. It’s like a game of catch with a ball. Unlike the words we’re ordered to say, repeating questions we already know the answers to can be a pleasure—it’s playing with sound and rhythm.

Q4Why do you echo questions back at the asker? For a long time, I’ve noticed that people with autism often repeat questions, like parrots. Instead of answering the question, we just say the exact same question straight back at the person asking it. Once, I thought we did it simply because we didn’t know how to answer, but now I think there’s more to the mystery than this. 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.

True compassion is about not bruising the other person’s self-respect. That’s what I think, anyway.

True, we don’t look at people’s eyes very much. “Look whoever you’re talking with properly in the eye,” I’ve been told, again and again and again, but I still can’t do it. To me, making eye contact with someone I’m talking to feels a bit creepy, so I tend to avoid it. Then where exactly am I looking? You might well suppose that we’re just looking down, or at the general background. But you’d be wrong. 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.

Q21Why 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.

Q23What’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 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. 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.

But when I’m jumping, it’s as if my feelings are going upward to the sky.

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.

Q27Why 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.

Q28Why 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.

Fair enough, you may be looking at the exact same things as us, but how we 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.

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 feel it 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.

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.

Q38Why 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.

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

Q46Do 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.

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.

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.

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.

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.