Portraits of Autism #7

A big thank you to Kim for holding the fort last week while I was in Italy! I had a wonderful time, thank you, and am nearly rested enough to get the kids back to school and fight the good fight to get a reasonable school bus service and special help for Max. Turkish schools still haven't started back, though so there's not much going on at the Special Ed. centre. As a result I'm having to ramble on a bit about things and people from longer ago. I'm hoping it still achieves what I set out to do with these portraits - raise awareness, increase familiarity - and that it's still interesting!

Max loves going to his special education centre. He likes the work, and gets on extremely well with his teachers. He loves going for a cup of tea or a meal afterwards.

There's been times when he didn't want to go - he used to have to go three to four times a week, after school, and at the weekend. He was knackered. He wanted to go home and play. And he let us know it. We'd have to drag him to the bus, sit there, holding him down while he screamed and kicked, then again in the taxi. All things considered, people were pretty amazing about it. We got the odd stare and grumble, but no one ever asked us to step down from a bus, which is what happened the one time Max had a tantrum in a British bus (although, to be fair, that was for safety reasons). When we'd get to the centre, having dragged Max up the stairs, we'd breathe again. No one stared, no one shushed. The teacher would come in, ask if there was anything in particular that was troubling him, and takeover. Just like that. Calmly, she would tell Max that he had to go to class and, if necessary, drag him there - did I say the teachers all had tiny bodies? - without losing their cool. Then we'd still hear a bit of screaming, then whining, and at the end of the class, he would come out happy, having done all his work.

Now, when I say that people didn't stare, I don't mean that their lack of judgement was caused by their having experiencing the very same thing. In fact, there aren't many meltdowns at the centre at all. Most of the kids are quiet and well behaved, in the way thatTurkish kids generally are. Little boys of 5 or 6 sit on a chair, for quarter of an hour, not even trying to climb. If they sit on the floor, they are immediately told to get up, and they come back to their chair. They never put their feet on the furniture.

It's as though the parents' attitude is that autism is no excuse for bad manners, or rough behaviour, and somehow, they get it through to the kids. Don't ask me how.

Imagine how I felt taking Max, who would use the waiting room as an obstacle course, and only sit down if he could put his muddy feet on the chair too. But again, no judgement. Max was deemed a sweet and clever little boy, and, provided he didn't seat on the floor, other children were encouraged to play with him.

Because of this good behaviour and absence of loud protesting, I'd always assumed that most kids were happy to come, and that Max, on those bad days, was the exception. It turns out, of course, that this was not true.

When Max started, we used to have appointments at the same time as another little boy of the same age. His mother and I would often chat - in Turkish, so that made for very limited and slow conversations. In these early days, following Max's diagnosis, it really helped a lot to be able to talk to other parents, and I think my Turkish speaking skills improved just to help me cope - a cunning, if slightly implausible evolution story... This mother also needed to talk. She was always very open about how she felt about her son's autism, and there were a lot of ups and downs. She told me about the treatments she'd tried, the doctors she'd taken her son to, the different centres of special education they' d attended. She told me how little effect any of it seemed to have. She said how some days she was hopeful, and some days she was just depressed. She saw how Max's language started to develop while her son's remained the same.

She was especially worried about schooling. Turkish state schools are at the best of time, a bit short on teachers. They'll have a school psychologist, but it's not clear whether an autistic child could get the kind of one-to-one help they'd need. A private school, as was our experience, is unlikely to want to take in a special needs child. We were told, when we tried to enrol Max in the school our daughter attended, that 'he wouldn't be happy' there. We were lucky that there was the French school - if only because they speak a language we can all understand, and because they actually accepted Max. They don't have anything in place to help him, so we're having to organise it ourselves - with their help - and pay for it, but at least, that's something. 

One day my new friend told me that it was a struggle bringing her son in three times a week. That he didn't enjoy the classes, and didn't want to come. I'd been in the same room as her son and spoken to him many times, and never had an inkling of this. He'd sit, and he'd smile. He'd make an effort to say some words, like 'hello' if we pushed him. He seemed pleased to see Max. I simply didn't know he was unhappy. His quietness and good behaviour made it that much harder to read his emotions.

Reflecting on this now, I'm less surprised. I've seen Max on his best behaviour, with a smile stapled to his face, moving slowly, or not at all, and speaking quietly (!!!) when he was terrified, or in a thoroughly new situation that he could not control - for instance, with a new babysitter. It's just that, with him, this kind of behaviour would never last very long. The second time round, if he still was unhappy, he'd be kicking and screaming and crying his little heart out. My friend's son didn't do that. He just sat there, smiling, week after week.

Then, one day, they stopped coming. I don't know what they decided. Maybe they've moved somewhere where they could get better help. I hope they're happier now.

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