The Reason I Jump (6 page)

That said, I still can’t even tell when I’ve stepped on someone’s foot or jostled someone out of my way. So something connected with my sense of touch might be mis-wired too.

Q29 W
HY
DO
YOU
DO
THINGS
THE
REST
OF
US
DON
’
T
?
DO
YOUR
SENSES
WORK
DIFFERENTLY
IN
SOME
WAY
?

‘Why won’t you wear shoes?’ ‘Why will you only wear half-length sleeves?’ ‘Why do you always shave off or pluck out your body-hair? Doesn’t it hurt?’ Every time us people with autism do something that other people wouldn’t, it must make you wonder why. Do people with autism possess different senses? Or do these actions just give us some sort of kick?

To my mind, both answers are barking up the wrong tree. The reason could be that we’ve got into such a state that if we
don’t
do these actions, we’ll go to pieces completely. If you talk about someone’s ‘senses working differently’ it means that the person’s nervous system is somehow malfunctioning. But I believe that in our case, there’s nothing wrong with us at a nerve level. Instead, it’s actually our emotions that trigger the abnormal reactions. It’s only natural for anyone stuck in a bad place to try to get out of it, and it’s my own despair that causes me to misread the messages my senses are sending me. If all of my attention gets focused on one area of my body, it’s as if all of my body’s energy is concentrated there too, which is when my senses all report that something in that area is going badly wrong.

If a person without autism is going through a hard time, he or she can talk it over with someone, or make a ruckus about it. But in our case, that’s not an option – we can never make ourselves understood. Even when we’re in the middle of a panic attack, people either don’t get what’s happening to us, or else they just tell us to stop crying. My guess is that the despair we’re feeling has nowhere to go and fills up our entire bodies, making our senses more and more confused.

Q30 W
HY
ARE
YOU
TOO
SENSITIVE
OR
INSENSITIVE
TO
PAIN
?

Among people with autism, there are some who make a huge fuss when they have their hair or nails trimmed, even though it shouldn’t hurt at all. At the same time, there are people who stay very calm and collected, even when they’ve got an injury that’s obviously painful.

I don’t think this is all to do with nerves and nerve-endings. It’s more a matter of ‘inner pain’ expressing itself via the body. When memories suddenly come to people, we experience a flashback – but in the case of people with autism, memories are not stored in a clear order. For those of us who are disturbed by having their hair and nails trimmed, somehow their negative memories are probably connected to the action.

A normal person might say, ‘Oh, he’s never liked having his hair cut or his nails trimmed, ever since he was small, and we’ve no idea why.’ But the thing is, the memory of a person with autism isn’t like a number-scale from which you pick out the recollection you’re after: it’s more like a jigsaw puzzle, where if even just one piece is mis-inserted, the entire puzzle becomes impossible to complete. What’s more, a single piece that doesn’t belong there can mess up all the surrounding memories as well. So it’s not necessarily physical pain that’s making us cry at all – quite possibly, it’s memory.

As for people who don’t show any signs of pain, my guess is that they’re unable to keep those signs on display. I think it’s very difficult for you to properly get your heads around just how hard it is for us to express what we’re feeling. For us, dealing with the pain by treating it as if it’s already gone is actually easier than letting other people know we are in pain.

Normal people think we’re highly dependent and can’t live without ongoing support, but in fact there are times when we’re stoic heroes.

Q31 W
HY
ARE
YOU
SO
PICKY
ABOUT
WHAT
YOU
EAT
?

Some people with autism keep to a very limited diet, it’s true. I don’t really have this problem myself, but to some degree I can understand where they’re coming from, I think. We do this business called eating three times a day, but for some people having to eat different meals each time can be a major headache. Each type of food has its distinct taste, colour and shape. Usually, these differences are what make eating a pleasure, but for some people with autism, only those foodstuffs they can already think of as food have any taste. Everything else is about as appetizing as toy food you might be served at a little kid’s ‘pretend tea-time’.

So why do these people experience new food this way? You could say, ‘because their sense of taste is all messed up’ and have done with it. But couldn’t you also say that they just need more time than the average person to come to appreciate unknown types of food? Even if they’d be happy sticking with only those foods they’re used to eating, in my opinion meals aren’t just about nutrition – meals are also about finding joy in life. Eating is living, and picky eaters should definitely be nudged towards trying different foods little by little. That’s what I reckon, anyway.

Q32 W
HEN
YOU
LOOK
AT
SOMETHING
,
WHAT
DO
YOU
SEE
FIRST
?

So how do people with autism see the world, exactly? We, and only we, can ever know the answer to that one! Sometimes I actually pity you for not being able to see the beauty of the world in the same way we do. Really, our vision of the world can be incredible, just incredible …

You might reply, ‘But the eyes we all use to look at things work the same way, right?’ Fair enough, you may be looking at the exact same things as us, but
how
we perceive them appears to be different. When you see an object, it seems that you see it as an entire thing first, and only afterwards do its details follow on. But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus. What part of the whole image captures our eyes first depends on a number of things. When a colour is vivid or a shape is eye-catching, then that’s the detail that claims our attention, and then our hearts kind of drown in it, and we can’t concentrate on anything else.

Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we’re not with anyone, but we’re always in the company of friends.

Q33 I
S
IT
DIFFICULT
FOR
YOU
TO
CHOOSE
APPROPRIATE
CLOTHING
?

Whether it’s hot or whether it’s cold, I always have a hard time choosing the right clothing, as well as putting extra layers on or peeling them off accordingly. Some people with autism keep wearing exactly the same type of clothes all through the year, in fact. What’s the deal here? What’s so tricky about putting on or taking off clothes as you need to?

Well – search me. It might be scorching hot, and we
know
it’s scorching hot, but it simply might not occur to a person with autism that taking off a layer is a good idea. It’s not that we don’t understand the logic – it’s just that we somehow forget. We forget what we’re wearing, and how to make ourselves cooler.

I can mop the sweat off my face with my handkerchief, at least – I’m used to doing this now – but adjusting my clothing is a taller order because the situation is often changing. So I can well sympathize with those people with autism who prefer to wear the same clothes day in, day out. Clothes are like an extension of our bodies, an outer skin, and so the day-in, day-outers find it reassuring to stick to the same outfit. We feel obliged to do everything we can to protect ourselves against uncertainty, and wearing comfy clothes we like is one way of doing this.

Q34 D
O
YOU
HAVE
A
SENSE
OF
TIME
?

Time is a continuous thing with no clear boundaries, which is why it’s so confusing for people with autism. Perhaps you’re puzzled about why time intervals and the speed of time are so hard for us to gauge, and why time seems such slippery stuff for people with autism.

For us, time is as difficult to grasp as picturing a country we’ve never been to. You can’t capture the passing of time on a piece of paper. The hands of a clock may show that some time has passed, but the fact we can’t actually
feel
it makes us nervous.

Because I have autism, I know all about this and I feel it myself – believe me, this is scary stuff. We’re anxious about what kind of condition we’ll be in at a future point, and what problems we’ll trigger. People who have effortless control over themselves and their bodies never really experience this fear.

For us, one second is infinitely long – yet twenty-four hours can hurtle by in a flash. Time can only be fixed in our memories in the form of visual scenes. For this reason there’s not a lot of difference between one second and twenty-four hours. Exactly what the next moment has in store for us never stops being a big, big worry.

Q35 W
HY
ARE
YOUR
SLEEP
PATTERNS
ALL
MESSED
UP
?

Quite a few people with autism find it hard to fall asleep at night. When I was little there were times when I couldn’t fall asleep either, even when it got really late. This seems strange, because we human beings aren’t nocturnal animals, right? But now I rarely have this problem. The cure might simply be time. People who can’t sleep may appear to be okay on the outside, while inside they’re exhausted.

I don’t really know what causes sleeping disorders, so all I want to ask you to do here is, if your autistic child isn’t going to sleep at a decent hour, please don’t tell them off – even if it goes on night after night after night.

N
EVER
-
ENDING
SUMMER

People with autism can be restless and fidgety all the time, almost to the point of it looking comical. It’s as if it’s the summer for us the whole year round. Most people look pretty relaxed when they’re not doing anything in particular, but we’re always zooming off madly like a kid who’s late for school. We’re like cicadas who’ll miss the summer unless we hurry, hurry, hurry.
Bzzzzzz, bzzzzzz, crick-crick, crick-crick, chirrrrrr
… We cry our hearts out, shout our heads off, and never rest in our battle against time.

As autumn comes around the year’s corner, the cicadas’ lives come to an end. Human beings still have plenty of time in store, but we who have autism, who are semi-detached from the flow of time, we are always uneasy from sunrise to sunset. Just like the cicadas, we cry out, we call out.

Q36 W
HY
DO
YOU
LIKE
SPINNING
?

Us people with autism often enjoy spinning ourselves round and around. We like spinning whatever object comes to hand, for that matter. Can you understand what’s so much fun about spinning?

Everyday scenery doesn’t rotate, so things that do spin simply fascinate us. Just watching spinning things fills us with a sort of everlasting bliss – for the time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there’s something beautiful about that.

Q37 W
HY
DO
YOU
FLAP
YOUR
FINGERS
AND
HANDS
IN
FRONT
OF
YOUR
FACE
?

Flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant, filtered fashion. Light that reaches us like this feels soft and gentle, like moonlight. But ‘unfiltered’ direct light sort of ‘needles’ its way into the eyeballs of people with autism in sharp straight lines, so we see too many points of light. This actually makes our eyes hurt.

This said, we couldn’t get by without light. Light wipes away our tears, and when we’re bathed in light, we’re happy. Perhaps we just love how its particles pour down on us. Light particles somehow console us. I admit this is something I can’t quite explain using logic.