But constrained both by ourselves and by the people around us, all we can do is tweet-tweet, flap our wings and hop around in a cage. Ah, if only I could just flap my wings and soar away, into the big blue yonder, over the hills and far away!
Q26 Why do you write letters in the air?
People with autism often write letters in the air. Are you trying to tell us something?or Are you thinking about something?you must be wondering, I guess. In my case, I’m writing to confirm what I want to remember. As I write, I’m recalling what I’ve seen—not as scenes, but as letters, signs and symbols. Letters, symbols and signs are my closest allies because they never change. They just stay as they are, fixed in my memory. And whenever we’re lonely or happy, in the same way that you might half hum a song to yourself, we summon up our letters. When I’m writing them out, I can forget everything else. I’m not alone when I’m with letters. Letters and symbols are much easier for us to grasp than spoken words, and we can be with them whenever we want.
Q27 Why do people with autism often cup their ears? Is it when there’s a lot of noise?
There are certain noises you don’t notice but that really get to us. The problem here is that you don’t understand how these noises affect us. It’s not quite that the noises grate on our nerves. It’s more to do with a fear that if we keep listening, we’ll lose all sense of where we are. At times like these, it feels as if the ground is shaking and the landscape around us starts coming to get us, and it’s absolutely terrifying. So cupping our ears is a measure we take to protect ourselves and get back our grip on where we are.
The noises that get to people with autism vary from person to person. I don’t know how we’d cope if we couldn’t cup our ears. Me too, I cup my ears sometimes, though I’ve gradually gotten used to the noises by pressing my hands over my ears less and less heavily. Some people can overcome the problem by slowly becoming accustomed to the noises, I guess. What matters most is that we learn to feel safe and secure even when the noises strike us.
Q28 Why do you move your arms and legs about in that awkward way?
In my gym class, the teacher tells me to do things like “Stretch your arms!” and “Bend at the knees!” But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail.
I think the reason why some kids with autism try to get hold of an object by “borrowing” someone else’s hand is that they can’t tell how far they need to extend their own arms to reach the object. They’re not too sure how to actually grab the object either, because we have problems perceiving and gauging distances. By constant practice, however, we should be able to overcome this difficulty.
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 miswired too.
Q29 Why 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 gotten into such a state that if we don’tdo 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 Why 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 misinserted, 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 Why 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, color 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 be 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 toward trying different foods little by little. That’s what I reckon, anyway.