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 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.
Q6 Do you find childish language easier to understand?
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.
Q7 Why do you speak in that peculiar way?
Sometimes, people with autism speak with a strange intonation, or use language in a different way. Non-autistic people can sort out what they want to say in real time, while they’re having their conversation. But in our case, the words we want to say and the words we can say don’t always match that well. Which is why our speech can sound a bit odd, I guess. When there’s a gap between what I’m thinking and what I’m saying, it’s because the words coming out of my mouth are the only ones I can access at that time. These words are either available because I’m always using them or because they left a lasting impression on me at some point in the past.
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.
Q8 Why do you take ages to answer ques
tions?
You normal people, you talk at an incredible speed. Between thinking something in your head and saying it takes you just a split second. To us, that’s like magic!
So is there something wrong with the circuitry in our brains? Life’s been tough for people with autism, pretty much forever, yet nobody’s really been able to identify the causes of autism. For sure, it takes us ages to respond to what the other person has just said. 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.
I don’t know if this is making a whole lot of sense to you. Once our reply has disappeared, we can never get it back again. What did he say again? How was I going to answer her question?… Search me! And all the while, we’re being bombarded by yet more questions. I end up thinking, This is just hopeless. It’s as if I’m drowning in a flood of words.
Q9 Should we listen to every single word you say?
Making sounds with your mouth isn’t the same thing as communication, right? Lots of people can’t get their heads fully around this, I think. Isn’t there a belief out there that if a person is using verbal language, it follows that the person is saying what they want to say? It’s thanks to this belief that those of us with autism get even more locked up inside ourselves.
Just because some of us can make sounds or utter words, it doesn’t follow automatically that what we’ve said is really what we wanted to say. Even with straightforward “Yes” or “No” questions, we make mistakes. It happens all the time to me that the other person misunderstands or misinterprets what I’ve just said.
Because I’m barely able to hold a conversation, fixing what’s gone wrong is beyond my powers. Every time this happens, I end up hating myself for being so useless and clamming up. Please don’t assume that every single word we say is what we intended. This makes communication between us difficult, I know—we can’t even use gestures—but we really badly want you to understand what’s going on inside our hearts and minds. And basically, my feelings are pretty much the same as yours.
Q10 Why can’t you have a proper conversation?
For a long time I’ve been wondering why us people with autism can’t talk properly. I can never say what I really want to. Instead, verbal junk that hasn’t got anything to do with anything comes pouring out of my mouth. This used to get me down badly, and I couldn’t help envying all those people who speak without even trying. Our feelings are the same as everyone else’s, but we can’t find a way to express them.
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. All on our own, there’s nothing we can do about this problem, and there were times when I used to wonder why Non-Speaking Me had ever been born. But having started with text communication, now I’m able to express myself via the alphabet grid and a computer, and being able to share what I think allows me to understand that I, too, exist in this world as a human being.
Can you imagine how your life would be if you couldn’t talk?
The Mystery of the Missing Words
Us kids with autism, we never use enough words, and it’s these missing words that can cause all the trouble. In this example, three friends are talking about their classmate who has autism:
“Hey, she just said, ‘All of us’!”
“So … that must mean she wants to join in with us, yeah?”
“Dunno. Maybe she wants to know if we’re all doing it.”
In fact, the autistic girl’s ‘all of us’ came from something the teacher had said earlier on in the day: “Tomorrow, all of us are going to the park.” What the girl wanted to find out was when they were going. She tried to do this by repeating the only words she could use, “all of us.” Here you can see how our missing words tweak your imaginations and send you off on wild-goose chases, here, there and everywhere.
Honestly, what a mysterious language us kids with autism speak!
Q11 Why don’t you make eye contact when you’re talking?
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.
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 …
Q12 You seem to dislike holding hands with people.
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. I don’t even remember letting it go until I hear the other person say, “Huh—it looks like he doesn’t want to hold my hand.”
That really used to depress me. But because I can’t explain to the person why I let go of his or her hand, and since I do in fact find it hard to keep holding the hand for long, there’s not much I can do about the misunderstanding.
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.
Q13 Do you prefer to be on your own?
“Ah, don’t worry about him—he’d rather be on his own.”
How many times have we heard this? I 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. 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.
Q14 Why do you ignore us when we’re talking to you?
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.
“Not noticing,” however, is not the same as “deliberately ignoring.” But often people assume I must be arrogant or “retarded.” People around me always make me realize that I’m being spoken to by saying things like, “Say hello back, then, Naoki,” or, “What do you say, then?” So whenever that happens I just repeat what I’ve been told to say, like a mynah bird learning a new word. Even though I feel guilty toward the person who has spoken to me, I can’t even apologize, so I end up feeling miserable and ashamed that I can’t manage a proper human relationship.
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.
Q15 Why are your facial expressions so limited?
Our expressions only seem limited because you think differently from us. It’s troubled me for quite a while that I can’t laugh along when everyone else is laughing. 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 don’t need to think about other people or anything else, that’s when we wear our natural expressions.