The Reason I Jump (4 page)

Q10 W
HY
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 is 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?

T
HE
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 W
HY
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 it is 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 Y
OU
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 D
O
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 W
HY
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 towards 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 his or her voice.

So it would help us a great deal if you could just use our names first to get our attention, before you then start talking to us.

Q15 W
HY
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.

Q16 I
S
IT
TRUE
THAT
YOU
HATE
BEING
TOUCHED
?

Personally, I have no particular problem with physical contact, but sure, some people with autism can’t stand being hugged or touched. I don’t know why, to be honest – I guess it just makes them feel uneasy. Even the way we adjust our clothing to match the season, putting on more clothes in winter and fewer in summertime, this can be a very big deal for people with tactile issues. Acting accordingly as situations change is a tough call.

More generally, for a person with autism, being touched by someone else means that the toucher is exercising control over a body, which even its owner can’t properly control. 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.

Q17 W
HY
DO
YOU
WAVE
GOODBYE
WITH
YOUR
PALM
FACING
YOURSELF
?

When I was small, I used to wave goodbye with my palm facing inwards when I was told, ‘Wave bye-bye!’ I found simple gym exercises and dancing quite impossible. The reason is that imitating movement is difficult for people with autism. Because we don’t know our own body parts so well, moving those parts of the body we can track with our eyes is our first step towards imitating movement properly.

I never understood people when they told me that I was waving goodbye the wrong way round, until one day I saw myself in a full-length mirror. That was when I realized – I was waving goodbye to myself!

S
LIP
SLIDING
AWAY

‘I can run faster than any of us!’ said the Hare, boing-ing away.

‘But we had a race a long time ago to settle this and I won,’ said the Tortoise, crossly. ‘I’m the fastest.’

None of the other animals was at all interested. ‘Ah, who cares?’

But the Hare insisted on having another race, so the Tortoise finally gave in and turned up to the starting line.

The race between the Hare and the Tortoise was about to start.

‘Ready, steady, go!’

The Hare dashed away at terrific speed.

The Tortoise slipped and flipped over onto his back, at which all the other animals ran up to the Tortoise to see if he was all right: ‘Poor you, are you okay? You’d better go home and rest.’

And so they all carried the Tortoise back to his house.

The Hare reached the finishing line.

Nobody was waiting but himself.

Q18 W
HEN
YOU
’
RE
ON
ONE
OF
YOUR
HIGHS
,
WHAT
’
S
GOING
THROUGH
YOUR
MIND
?

Sometimes people with autism start laughing like a drain or appear to be having enormous fun on their own without any obvious reason for it. You must be wondering,
what on Earth’s gotten into him?

At times like these, we’re having ‘imaginings’. Or not quite imaginings, but we experience pictures or scenes in our minds that pop up out of nowhere. Maybe it’s the memory of something that made us laugh, or maybe it’s a page from a book we read.

This might be hard for you to understand. But try to see these ‘highs’ as a stronger version of those times when you remember something funny, and can’t help but chuckle about it.

Q19 W
HAT
ARE
YOUR
FLASHBACK
MEMORIES
LIKE
?

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.

I know I have lots of pleasant memories, but my flashback memories are always bad ones, and from out of the blue I get incredibly distressed, burst into tears or just start panicking. Never mind that it’s a memory from ages ago – the same helpless feeling I had then overflows and floods out and it just won’t stop.