Still, we shouldn’t do what we shouldn’t do. How, as thinking beings, can we break out of this loop? This is a big project. I work hard to solve the problem, but this work costs so much energy. Maintaining this grip on myself is really, really, really tough. It’s at these times that we need your help with patience, guidance and love. Of course we want you to stop us from doing what we’re not supposed to do, but we also want you to understand what we’re going through at these times.
Q53 Why are you obsessive about certain things?
We don’t obsess over certain things because we like it, or because we want to. People with autism obsess over certain things because we’d go crazy if we didn’t. By performing whatever action it is, we feel a bit soothed and calmed down. But then whenever someone tells me off for doing the action, or even prevents me from repeating it, I feel utterly miserable. I never actually wanted to do it in the first place, and now I end up hating myself even more for not being able to control my own actions. Whenever our obsessive behavior is bothering other people, please stop us right away, whatever way you can. The person who’s suffering the most is the one who’s causing all the headaches for everyone else—that is, the one with the autism. Even though it looks as if we’re frolicking about and having the best time, inside we’re aching and hurting because we know we don’t even have control over what our own bodies are doing.
All that said, when our obsessive behavior isn’t actually bothering anyone, I’d ask you just to keep a quiet eye on us. It won’t last forever. One fine day, however hard we have tried to will ourselves to stop before, the obsessive action suddenly stops itself, without warning—like, “How come?” Somehow our brain flashes up a GAME OVER signal. The sign works like when you’ve just guzzled down an entire bag of sweets. The need to obsess about whatever it was is all used up. When that sign appears, I feel set free, like someone who can finally put aside all of last night’s dreams.
The problem is, how to help people with autism stop their obsessive actions in cases when they arebothering others? To you who are helping us, I’d say this: please handle and approach our behavioral issues with a strong faith that they are definitely going to pass, at some point in the future. When we are stopped from doing what we want, we may well make a terrible song and dance about it, but in time we’ll get used to the idea. And until we reach that point, we’d like you to stick with it, and stick with us.
The Black Crow and the White Dove
There was once a black crow who liked a certain song called “The Seven Little Crows,” which began, Crow, Crow, Crow, why do you caw?Except in this song, crows in stories are bullies and villains who everyone hates. This troubled the black crow, who would ask himself, How come it’s always the crows who are the bad guys?
One day, a white dove who had lost her way met the black crow. She asked, “Where does this path go?” Then the white dove stared down at the ground, looking lonely.
The black crow wondered what was wrong, and asked, “What’s the matter?”
On the point of tears, the white dove said, “I’ve been searching for the path to happiness for a long, long time, but I still can’t find it anywhere. And I’m supposed to be the bird of peace, too …”
The black crow was surprised to learn that even a bird as beautiful and as loved by everyone as the white dove nonetheless had deep problems to worry about. His answer was this: “But all paths are one connected path.”
The white dove looked taken aback by this unexpected answer. But after a time, she smiled. “How about that? So the path I’ve been searching for all this time is the path I am already on.” In excellent spirits, the white dove flew off, up into the blue sky. Then the black crow, too, turned his head skyward, then flapped his wings vigorously, and away he flew. And the black crow looked no less perfect against the deep blue than the white dove.
Q54 Why do you need cues and prompts?
People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we won’t actually start drinking until someone’s said, “Enjoy” or “Go ahead and drink, then.” Or even after the person with autism has announced, “Right, I’ll hang the laundry now,” he won’t get started until someone has said back, “Okay, that’s great.”
I don’t really know why some people with autism need these cues, but I do know that I’m one of them. Since we already know what we’ll be doing next, surely we should just be able to get on with it unprompted, right? Yes, I think so too! But the fact is, doing the action without the cue can be really, really tough. In the same way as you don’t walk across the street until the light turns green, I can’t “switch on” the next action until my brain receives the right prompt. Doing the next action without obeying “the prompt rule” is terrifying. It’s enough to make me lose the plot completely.
Once we’re through the terrifying phase, we can, bit by bit, become used to the idea that doing things without the prompt is possible. But getting to that point isn’t something we can do alone—as you can tell, by the mega-fuss we make every time. We cry, we scream, we hit out and break things. But still, we don’twant you to give up on us. Please, keep battling alongside us. We are the ones who are suffering the most in these scenes, and badly, badly want to free ourselves from our own chains.
Q55 Why can you never stay still?
My body’s always moving about. I just can’t stay still. When I’m not moving, it feels as if my soul is detaching itself from my body, and this makes me so jumpy and scared that I can’t stay where I am. I’m always on the lookout for an exit. But even though I’m forever wanting to be someplace else, I can never actually find my way there. I’m always struggling inside my own body, and staying still really hammers it home that I’m trapped here. But as long as I’m in a state of motion, I’m able to relax a little bit.
Everyone tells people with autism, “Calm down, stop fidgeting, stay still,” when we’re busy moving around. But because I feel so much more relaxed when I ammoving, it took me quite a while to work out exactly what their “calm down” even meant. Finally, I’ve come to understand that there are times when I’m not supposed to be moving about. The only way we can learn to do this is by practicing, a little at a time.
Q56 Do you need visual schedules?
I understand that any plan is only a plan, and is never definite, but I just cannot take it when a fixed arrangement doesn’t proceed as per the visual schedule. I understand that changes can’t always be avoided, but my brain shouts back, No way, that’s not acceptable. So speaking for myself, I’m not a big fan of having visual schedules around the place. People with autism may look happier with pictures and diagrams of where we’re supposed to be and when, but in fact we end up being restricted by them. They make us feel like robots, with each and every action preprogrammed. What I’d suggest is that instead of showing us visual schedules, you talk through the day’s plan with us, verbally and beforehand. Visual schedules create such a strong impression on us that if a change occurs, we get flustered and panicky.