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.

Observing that the new change can also be shown on the schedule is beside the point, I’m afraid. The message I want to get across here is: please don’t use visual things like pictures on our schedules, because then the activities on the schedules, and their times and timings, get imprinted too vividly onto our memories. And when that happens, we end up stressing ourselves over whether what we’re doing now is or isn’t matching up with what was on the schedule. In my case, I end up checking the time so often that I’m no longer able to enjoy what I’m doing.

People who don’t live with autism often think that the rest of us won’t be able to understand the plan for the day just by listening. But give it a try, and although we might ask you the same questions over and over, we will get the hang of it, and ask you less and less. Sure, this will take time, but I think it’s easier for us in the long run. Of course, when it comes to explaining the order that you do certain actions in, or instructions about how to make such-and-such an object, visual aids, like pictures, can help us a lot. But being shown photos of places we’re going to visit on an upcoming school trip, for example, can spoil our fun.

Q57 What causes panic attacks and meltdowns?

I don’t know if you can understand this one. Panic attacks can be triggered by many things, but even if you set up an ideal environment that gets rid of all the usual causes for a given person, we would stillsuffer panic attacks now and then.

One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown.

When this is happening to us, please just let us cry, or yell, and get it all out. Stay close by and keep a gentle eye on us, and while we’re swept up in our torment, please stop us from hurting ourselves or others.

Q58 What are your thoughts on autism itself?

I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists.

Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure.

Foreword

I wrote this story in the hope that it will help you to understand how painful it is when you can’t express yourself to the people you love. If this story connects with your heart in some way, then I believe you’ll be able to connect back to the hearts of people with autism too.

I’m Right Here

Shun used to think that he knew himself very well, but from that day on he was no longer sure. Everyone’s staring at my face. The early evening sky was ominous with orange clouds bound by ash-grey. Why are they all staring at me?When Shun had emerged from his local supermarket, an old man came over and asked, “What are you doing here?” Shun had never met him before. He wore a red hat pulled down low over his eyes, a white T-shirt and black knee-length shorts, even though it was winter. Never talk to strangers, Shun had told himself, and started hurrying for home. And that was the moment when Shun noticed— everyone’s staring at my face. His first thought was that everyone was worrying about him, but no, it wasn’t that kind of look … How to put it? Not a surprised look, not a searching gaze … more of an icy, heart-chilling stare. Whatever it was, Shun ran off home.

“I’m back!”

Shun was relieved to get back home, safe and sound at last. His mom was busy preparing supper as usual. Shun opened the fridge and spoke to his mom while he took out a carton of juice. “Hey, Mom, today I …” Then Shun’s words just dried up. She was just standing there. Apron on, pan in hand, her hair and clothes the same as they were when Shun had left home earlier, but still, Shun couldn’t move a muscle. That icy stare again. Everything seemed to be revolving around him in slow motion. Get away from here, go, now, get out!Was Shun thinking this, or was someone ordering him? Shun managed to marshal his unmoving body into action, and he fled outside, almost howling.

Shun found himself in a park, with no memory of how he’d arrived there. Even though it was cold, his body was soaked in sweat. He was exhausted. What’s going on?To try to get a grip on things, Shun decided to look back over the day. I woke up, I went to school, I came home. So far, so normal. And after that … after that …He remembered nothing. What the hell did I do next?Shun sat on his bench, staring into space, while the wintry wind blew all around him. Like the hole in the middle of a doughnut, the memory had somehow fallen out from Shun’s mind. He couldn’t even cry. How strange that a person can keep his head, even when things have become as desperate as this. The sun was sinking low now. I have to do something about this, Shun thought, yet at the same time, he was also feeling, Whatever happens to me, happens. How much time had gone by? Shun noticed darkness all around him. He hauled himself to his feet.