Portraits of Autism #12

So I meant to have this posted on Monday for Speak up on November 1st!
This was a reaction to the communication shutdown advocated by an autism charity on that day, which was designed to raise awareness of autism by modelling what it feels like to unable to communicate with others. People would donate to the charity and put up a badge on their sites, shutting down virtual communication for the day. A few contrary people, like Rachel Cohen-Rottenberg who wrote the Speak up post, Varda, and Jen thought this would be a good opportunity to speak up about autism. I was definitely going to join them. Then I got virused, so went through an enforced communication shutdown. (Although I may well have sent out a few hundred thousands emails about penis enlargement...).

Anyway, as this is a Portrait of Autism post, let me take you back to the waiting room at the centre where Max gets his special education twice a week.

I'm alone in the room which is getting increasingly crowded with furniture. From a few kitchen chairs and a couple of armchairs, it's now got two sofas, six arm chairs and several occasional tables. And no one sits there anymore. Go figure.

On the small round and rickety table that's in front of me, sits a laptop - a big, black, dinosaur of a thing, a bit battered, but apparently functional.

What were they thinking?! 

It's plugged in on the other side of the room, so the wire crosses the entire room, zigzaging in between the chairs.

What were they thinking?!

The laptop is hooked on the wireless network so I'm able to watch Max on the web cam. His teacher is working him hard on something he had difficulties with this week at school. He's happy, concentrated and peaceful. And I know that next week, he won't have a problem with this sort of exercises anymore.

Every week one of Max's teachers at the French school calls me or emails me to tell me what he's been up to, and what they identified as potential problem areas, things he might need extra help with. Then I report back to his teacher at the centre on Friday and she works on these things. She'll then give us tips as to what we can do at home and in class to deal with this particular sort of problems, and she 'll write a note for the Saturday teacher so he can build on what she's done. Max has made huge progress this year, and in great part, we reckon that's down to improved communication between all his teachers and us. That's one reason why I wasn't prepared to shut down on Monday.

As I'm watching Max on the screen, a small child comes in. Immediately, before he even registers my presence, his eyes lock on the laptop. Almost as immediately, he senses that his mother is not keen on him going near the laptop. He knows he's not allowed to touch, no question about that. He's also obviously learned to do as he's told, as he's not laying a finger on it. But this is too much for him. He's getting over-stimulated, running around the room, flapping his arms and making strange noises. His mum can't make him stop - 'Please sit down' only works for a few seconds at best, and then he'll start again. She's looking like she might have a heart attack whenever he skips over the wire. Eventually she whisks him out of the room with the promise of snacks.

A few minutes later a father and his teenage son pop their noses in the room. They see the laptop at the same time, and there's a cartoon moment when the son's eyes jump out of their sockets and the father grabs him by the neck and pulls him out of the room. I don't see them again.

What, indeed, where they thinking putting a computer that kids are not allowed to use in the waiting room?! Every one knows that autistic kids often have a special affinity with computers. It's like leaving a bowl full of chocolates on the table and telling the kids (or parents) they can't have any. At home we have many laptops. Admittedly, right now, none of them is working. They are either virused or too battered even to be turned on. The one the kids use is on its last legs. But Max loves to play with it. He uses it to watch clips from his favourite programs on Youtube, plays games on the CBeebies site, learns how to spell, plays logic and maths games on Red Fish Soup, and creates pictures with KidsPix. He also owns toy computers for spelling games and an electronic toy from VTec.

Max is a lot less prone to meltdowns these days, but until a few months ago, we dreaded the times when the internet was down. If he wanted to go to one of his favourite sites and couldn't, he was devastated, and there'd be nothing we could do to make things better for him. The months when Youtube was banned in Turkey were not fun, let me tell you. All in all, I'm pretty glad that the communication shut down didn't take place six months ago, and that it was over quickly. I'm not sure how other autistic kids handle finding that a site they like isn't working, but I'm guessing they're not that different from Max.

When I went through my enforced communication shutdown, I didn't feel autistic. At all. Ok, given the ridiculously low scores I get when I do an online autism or asperger test, it's unlikely I'll ever feel autistic, but still. I felt like one of my modes of communication had been cut off, temporarily. I felt irritated, mostly. When Max loses the use of the computer, he is devastated. When he can't get hold of paper and pens, it's even worse. This is because these are his preferred modes of communication. He draws all the time. Even before he could speak, he would draw what was on his mind, he would work out problems he was having by drawing about them. Then I started drawing to him, as well as talking. I would draw for him things we were planning to do, so he would understand the sequence, know what to expect. I would draw things he was not supposed to do, with a big red circle, the universal 'no'. Then he started doing the same thing. One day he drew a cartoon of him and his father going to the pool, and then going to eat at a restaurant. He presented it to his dad who then felt obliged to take him!

Now Max can read, I write those (simple) stories for him, and he writes and draws them for himself.
He also talks all the time. Not always very effectively, and with lots of repetition (Is this a bus? Yes it's a bus. It's not a minibus, it's a bus. Is this a bus? Yes it's a bus...), but he's trying to communicate that way too.

He does communicate. He's not ever on shutdown. We thought he was, at first, when we thought autism did mean what it's etymology suggests - turning inside oneself. Then, like any parents would, we made the effort to figure out what our son's preferred mode of communication was, and we built on that.

Not all parents are lucky enough to figure out how to communicate and as many children - and adults - are still struggling to find a way of communicating with others, maybe it makes sense to describe what they are going through as shutdown. But for a large number of autistic people, the internet is a great way to communicate. So I apologize to my autistic readers for not having been around on Monday. It was unintentional.

Oh, one last thing. If you liked this post, would you mind terribly clicking on the RSS feed, here, or the Google connect buttons (top left)? And if you didn't like it, you might still want to look around. There's three of us, you know, so you're (almost) bound to find something you like. And then, if you've still got time, you could share this post or stumble it, or both and get in touch with your local tv station to sing our praises. We'll love you forever.


Anonymous said...

I'm glad you're back!!!

@jencull (jen) said...

Welcome back, and thank you for the shout out, I even liked being called contrary :D

You describe the scene so well, with the children and the computer, that I can picture it. Probably because my son is totally obsessed by technology, so much so that we ended up giving him my old laptop at 2.5 years old just for himself. I also understand how difficult it is when the internet is down, sigh.


Sandrine said...

Thank you! Now I'm really back. I'm all linuxed up and ready to go! (Still working out a few details, but hey.)
Jen: What surprised me is how Max didn't make a beeline for that computer. It really brought home to me how much he'd grown.

Anonymous said...

Still finding these posts utterly fascinating. Thank you.


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