The Reason I Jump (3 page)

And have a nice trip through our world.

Naoki Higashida
Japan, 2006

Q1 H
OW
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 dreamt 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 mum supported my writing hand in hers, I began to acquire a new way of interacting with others.

Then, to allow more independent communication, Mum 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 W
HY
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 W
HY
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 W
HY
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 useable 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 W
HY
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 D
O
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 a 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 W
HY
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 W
HY
DO
YOU
TAKE
AGES
TO
ANSWER
QUESTIONS
?

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 for ever, 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 S
HOULD
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.