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

by Naoki Higashida

The functions that genetics bestows on the rest of us—the “editors”—as a birthright, people with autism must spend their lives learning how to simulate. It is an intellectual and emotional task of Herculean, Sisyphean and Titanic proportions, and if the autistic people who undertake it aren’t heroes, then I don’t know what heroism is, never mind that the heroes have no choice.

Every autistic person exhibits his or her own variation of the condition—autism is more like retina patterns than measles—and the more unorthodox the treatment for one child, the less likely it is to help another

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.

When I was small, I didn’t even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem.

During my frustrating, miserable, helpless days, I’ve started imagining what it would be like if everyone was autistic. If autism was regarded simply as a personality type, things would be so much easier and happier for us than they are now. For sure, there are bad times when we cause a lot of hassle for other people, but what we really want is to be able to look toward a brighter future.

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. So for me, the alphabet grid isn’t just about putting together sentences: it’s about getting across to other people what I want and need them to understand.

When I’m talking in a weird voice, I’m not doing it on purpose. Sure, there are some times when I find the sound of my own voice comforting, when I’ll use familiar words or easy-to-say phrases. But the voice I can’t control is different. This one blurts out, not because I want it to; it’s more like a reflex. A reflex reacting to what? To what I’ve just seen, in some cases, or to some old memories. When my weird voice gets triggered, it’s almost impossible to hold it back—and if I try, it actually hurts, almost as if I’m strangling my own throat.

But even if we’re ordered to keep our mouths shut or to be quiet, we simply don’t know how. Our voices are like our breathing, I feel, just coming out of our mouths, unconsciously.

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.

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.

In “set-pattern” conversations, we manage much better; although, of course, when it comes to talking about your feelings, these patterns are no use at all. In fact, by relying on them too much you can end up saying the opposite of what you wanted to say. I swear conversation is such hard work! To make myself understood, it’s like I have to speak in an unknown foreign language, every minute of every day.

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.

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.

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.

We don’t even have proper control over our own bodies. Both staying still and moving when we’re told to are tricky—it’s as if we’re remote-controlling a faulty robot. On top of this, we’re always getting told off, and we can’t even explain ourselves. I used to feel abandoned by the whole world.

Please don’t judge us from the outside only. I don’t know why we can’t talk properly. But it’s not that we won’t talk—it’s that we can’t talk and we’re suffering because of it.

To me, making eye contact with someone I’m talking to feels a bit creepy, so I tend to avoid it.

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. 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…

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.

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.

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. 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.

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.

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.

Our expressions only seem limited because you think differently from 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. 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...

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 really start worrying about us. You see? We put up a barricade around ourselves to keep people out.

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.

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, I get 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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…