Thanks to training I’ve had with Ms. Suzuki at Hagukumi School, and my mom, I’ve learned a method of communication via writing. Now I can even write on my computer. Problem is, many children with autism don’t have the means to express themselves, and often even their own parents don’t have a clue what they might be thinking. So my big hope is that I can help a bit by explaining, in my own way, what’s going on in the minds of people with autism. I also hope that, by reading this book, you might become a better friend of someone with autism.

You can’t judge a person by their looks. But once you know the other person’s inner self, both of you can be that much closer. From your point of view, the world of autism must look like a deeply mysterious place. So please, spare a little time to listen to what I have to say.

And have a nice trip through our world.

Naoki Higashida

Japan, 2006

Q1 How are you writing these sentences?

The alphabet grid is a method of non-vocal communication. You might think that speech is the only way to get your points and intentions across, but there is another way to say what you want without using the vocal nervous system. At first I never dreamed I could make it work, but now I’m well able to express my true self using only a computer and an alphabet grid.

This was an incredible feeling! Not being able to talk means not being able to share what you’re feeling and thinking. It’s like being a doll spending your whole life in isolation, without dreams and without hopes. Sure, it took a long time before I could finally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interacting with others.

Then, to allow more independent communication, Mom invented the alphabet grid. The alphabet grid makes it possible to form my words by simply pointing to their letters, instead of having to write them out one by one. This also lets me anchor my words, words that would otherwise flutter off as soon as I tried to speak them.

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. 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.

Q2 Why do people with autism talk so loudly and weirdly?

People often tell me that when I’m talking to myself my voice is really loud, even though I still can’t say what I need to, and even though my voice at other times is way too soft. This is one of those things I can’t control. It really gets me down. Why can’t I fix it?

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.

I’d be okay with my weird voice on my own, but I’m aware that it bothers other people. How often have the strange sounds coming out of my mouth embarrassed me nearly to death? Honest, I want to be nice and calm and quiet too! 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.

Q3 Why 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.

Q4 Why 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.

It’s quite a complicated process, this. First, I scan my memory to find an experience closest to what’s happening now. When I’ve found a good close match, my next step is to try to recall what I said at that time. If I’m lucky, I hit upon a usable experience and all is well. If I’m not lucky, I get clobbered by the same sinking feeling I had originally, and I’m unable to answer the question I’m being asked. No matter how hard I try to stop it, that weird voice slips out, making me more flustered and discouraged, and so it gets harder and harder to say anything.

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.

Q5 Why do you do things you shouldn’t even when you’ve been told a million times not to?

“How many timesdo I have to tellyou?!”

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 nevergoing 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.