Life with autism: A Japanese schoolboy opens the door

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Naoki Higashida was 13 when he finished his book on what it's like to live with autism

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"What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh," writes Naoki Higashida. "This generally happens when there’s nobody watching us."

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Naoki Higashida was born in 1992 and diagnosed with autism when he was 5. While still in junior high school, using a Japanese language alphabet board to communicate, he completed The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism.

Brave, smart and sometimes quirky, the book is a mix of stories, reflections and questions-and-answers about life in that alternate reality of autism. It has just been published here in English in a translation by KA Yoshida, wife of famed novelist David Mitchell (Cloud Atlas), who provides the introduction. The couple have an autistic son.

Here’s an edited excerpt from Higashida’s The Reason I Jump:

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. True enough. It was very hard for me to act like a normal person, and even now I still can’t “do” a real conversation. I have no problem reading books aloud and singing, but as soon as I try to speak with someone, my words just vanish. Sure, sometimes I manage a few words — but even these can come out the complete opposite of what I want to say! I can’t respond appropriately when I’m told to do something, and whenever I get nervous I run off from wherever I happen to be. So even a straightforward activity like shopping can be really challenging if I’m tackling it on my own.

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.

Thanks to training, 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.

Q: Why do people with autism talk so loudly and weirdly?

A: 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.

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.

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.

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.

Why do you make a huge fuss over tiny mistakes?

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.

Why do you repeat certain actions again and again?

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.

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.

‘My brain is always sending me off on little missions, whether or not I want to do them.’

~ Naoki Higashida

Excerpted from The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. Original Japanese Copyright © 2007 Naoki Higashida. Originally published in Japanese by Escor Publishing Ltd. English translation copyright © 2013 KA Yoshida and David Mitchell. Published by Knopf Canada, a division of Random House of Canada Limited. Reproduced by arrangement with the Publisher. All rights reserved.



Source : The Star Insight , 24th August 2013