Wednesday 11 November 2009

And then there were two

I wasn't planning to write this entry for a few months, but events have a momentum of their own and sometimes it becomes senseless to swim against the tide. So here it is: we're having Adam, our four-year-old younger son, assessed for Asperger's syndrome.
At the moment it can only be a best guess where his behaviour is concerned. Straight away I should acknowledge that his development has been very different from Euan's. For a long time we thought of him as the "normal" brother who would be burdened with sharing the care of his more severely disabled sibling. But as the months have drifted by it has become gradually clear that he has issues of his own to deal with.
Adam was, in the beginning, a much more communicative boy than his brother. When his grandparents came to stay about two years ago, he made a great show of saying "goedemorgen Opa en Oma" when they came down to breakfast. He went to toddler football and seemed to enjoy the games, though he wasn't so sure about joining in. See, we thought to ourselves: happy. Contented. Aware. Interactive. We can produce mainstream children after all.
He had a few odd habits, but nothing that seemed too serious. He liked to pick up toys, drag them in front of his eyes and set them down in front of him. As he became more mobile - and he was, and is, freakishly agile for his age - he would run up and down beside the hedge with his head swivelled through 90 degrees. Railings and anything else that produced a stroboscopic effect when he walked past it had the same effect.
And then there were the rigid habits: always the yellow plate, never the green or red one. If the yellow plate was in the dishwasher, he'd lie down on the floor rather than eat his breakfast. Give him a cluster of cars or building bricks and he would line them up in a row, then ignore them. The tone of our observations changed, from: "look how nicely he's playing" to "there's another example of inappropriate play," accompanied with a sigh and a roll of the eyes. We knew which way things were heading.
What really clinched it, though, was the speech. Adam was a chatty boy as a toddler, but became more withdrawn at around three. He pointed if he wanted something and nodded or shook his head, only using words if he was forced outright. Given a choice of two things, where he had to verbalise his choice, he would rather walk away. He was particularly taciturn around anyone outside the house, including his own family. It was so extreme he would even stifle his giggles if someone tried to tickle him. And then his nursery, after a lot of coaxing, admitted that he wasn't socialising particularly well, but they hadn't raised it as an issue because he's "no bother". As children who say nothing and just play by themselves tend to be.
We went through all the possibilities: perhaps he was just copying his brother's behaviour; perhaps he was suffering from selective mutism; perhaps he was traumatised somehow by Euan. None of them really fitted. His habits were different in nature from Euan's; he did speak to people, eventually, once he got to know them; and by and large he and Euan get on well, playing games and singing songs together. Sometimes it's as if Adam understands Euan better than we do.
The assessment is in January. I've put off writing about it until now because I fear pre-empting it, but the evidence taken as a whole is pretty overwhelming. And besides, Magteld and I have already more or less adjusted to thinking of ourselves as a family with two autistic children. For better or for worse.
How do we feel about it? Resigned. Fearful. Kicked in the teeth. Enormously anxious. It's coincided with a phase of Euan's behaviour that has become increasingly difficult to manage, as well as a loft conversion that's gone on for far too long. (The events are not unconnected: Euan has clearly been uptight lately because he's been promised the new bedroom at the top of the house.) This week Magteld finally yielded and called on the social work department for help. He will be assessed, though God knows when, given that the social work profession is going through its own traumas at the moment. In the meantime, all we can do is soldier on and repeat to ourselves the old mantra that autism affects children first and their families second. It's a harsh consolation, to say the least.