The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy With Autism

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 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 over the crossing 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’t
want 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 W HY 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 some place 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
am
moving, 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 practising, a little at a time.

Q56 D O 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 pre-programmed. 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 out 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 have a go, 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