Portraits of Autism #9

'He's very good'.
We're sitting in the manager's office, at the autism education centre. This is two years ago. She is looking at Max appraisingly, and she says he's good.

At first I'm wondering whether maybe her English isn't quite up to distinguishing between different terms for praise. Maybe she means that he's nice, well-behaved, good-looking, or clever.

The teacher who's sitting opposite us says something in Turkish. The manager translates:
'He's good. He's hiding it well.'

At the time I'm amused. Is that how you're supposed to measure the progress of an autistic child? How well they're hiding their autistic tendencies? Later on I find it depressing. Why should my son's well being and future security depend on him hiding who he is? I hadn't had time to give that much thought to what I expected in terms of therapy. I was quite confident it wasn't a cure: Max had never seemed sick to me. I thought that maybe these people had special ways of teaching our children the skills that seemed to come naturally to others, that they'd get them back on track, on some track, anyway, by using a few tricks of educational psychology; or magic.

I quickly became aware that magic was definitely being used. Watching my son on camera while he was getting his therapy, I was in awe of what the teachers achieved, of the brilliant ideas they had, the great teaching materials they'd built out of cardboard, cut up magazines and Velcro. I was amazed that they got him to act differently without ever telling him off, with no apparent effort, just acting naturally. Well, I did notice that they all had fairly loud voices - it's no use trying to catch an autistic child's attention by whispering.

And yet, there was some learning to hide. The teacher would only respond to proper behaviour. If he started to flap his arm or make fun little noises, she'd ignore it and wait for the response she wanted. Then there'd be praise.After a while, we too started to discourage these ways of behaving. And he picked up on it very quickly. Nowadays, if he makes a meaningless noise, he'll stop and say: 'this is a strange noise. I shouldn't make strange noises'.

In a way it is sad. He should be able to make those noises if they make him feel good. And people who stare when he does should simply learn not to. It's rude. On the other hand, making these noises seems to go together with not being able to focus his attention to a task, and withdrawing from interaction. So it is probably a good thing that he should be able to stop himself, and come back to whatever it was he was doing to finish it. Most of the time, it's trying to have a conversation. Answering questions, asking them - both things he finds very difficult indeed. 'What did you do at school today?' 'I read my book' 'What else?'. And suddenly he's an airplane.

But he must have down time. Every body needs it, and autistic kids, who have to have therapy as well as school probably need it more than most. And in his down time, if he wants to be a plane, a fox in a box, or a repeating syllable, than that's fine by me.

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Nix said...

I think i agree with almost all of that.

I've spent decades trying to fit in -- because you have to, because flapping and ticcing too much makes everyone back away from the crazy person -- and, y'know, it never quite works. You learn to interoperate with the human world, but never to *like* it.

I still make meaningless noises (mostly taken from the C64 computer game _Magnetron_, which I was hooked on in my teenage years, and which was simply full of humming and beeping sounds). Y'know what? In my working life so far not a single person has ever commented on it. Now maybe it's ruining my career prospects, but I don't *think* so. Social modelling skills are far, far more important than not humming, or not talking to yourself.

As for downtime: gods, yes. On the rare weekends when I choose to visit the big city and have something approaching a social life, I *feel* the lack of downtime horribly for the next week. We spend our whole lives stressed, or managing stress. It wears on you, in the end.

One minor thing, though: you certainly can catch an autistic child's attention by whispering. Sensory hypersensitivity, y'know? It's just, if we're focused on something else, whispering isn't going to work. Neither is talking. Neither is anything other than a bucket of water over the head or imminent bodily needs. :)

Sandrine said...

Nix. First of all, thanks for all the comments - it's lovely to wake up to a whole bunch of them!
Of course, you're right - whispering does work when he's not focussing on something else(I even tried it again just before sending him to school this morning). When he was a baby, his sister, then a toddler once woke him up by whispering. She said: I'm sorry I woke Max up. I was speaking with a tiny voice, but I think he heard me better because he has tiny ears'. She wasn't far wrong!
As to the bucket of water, I have to say I've been sorely tempted at times. Does it only work for autistic people, or can I use it on my husband and my daughter as well?

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