A whole-life condition

Two weeks ago I was invited by the National Autistic Society to attend a reception for people connected with autism at the City Chambers in Edinburgh (the prompt for this was my fundraising 10K run, which eventually raised £1,135 for the NAS, so thanks to all who donated). There I met other parents whose circumstances differed appreciably from our own; in particular two mothers whose children were now grown up. Two things came out of this: firstly, how thankful we have to be that we weren't having to steer Euan through childhood 20 years ago, when the prevailing mood in authority was to marginalise or deny the existence of autistic children; but also, counterbalancing that, a realisation that his development and prospects are largely out of our hands. And with it comes a numbing sense of helplessness that can be difficult to suppress.
It starts with the understanding that autism is not a condition children recover from. They may, with a little luck and years of application by themselves and their carers, learn to function in social circumstances, perhaps even live independently. But the odds are stacked against them. I learned of a young, intelligent man in his late 20s who lives in a Steiner community. In many ways it's an ideal scenario for him: he is free to come and go, has a job on site that keeps him occupied, and is able to indulge his obsession with books undisturbed. Every few weeks, boards the train to visit his parents - at which point somebody has to remind him to pack his toothbrush and pyjamas in with his books. He's happy, his parents are content, but they've taken a long and torturous road to get there.
Raising autistic children, in short, requires a wholesale readjustment of their prospects. Suddenly the future is not about which university to send them to, but about whether they'll ever be able to hold down a job. Or enjoy a relationship on equal terms. Or even leave the house. When Magteld and I decided to have children in our twenties, part of the reasoning was that we would still have plenty of good, healthy years to look forward to once they were grown up and independent. We looked forward to helping them decorate their first homes and meeting their partners. Now we need to face up to the very real prospect of Euan living with us until we're too old to care for him. And the idea of him having to be taken into a care home in his forties or fifties to live out the rest of his days is truly terrifying. Particularly when we look at him now, as an engaging, quirky, self-contained little boy with an infectious giggle who can absorb himself tirelessly in a story or the sequence of the alphabet, and realise that the matter of whether he'll ever adjust to society is largely out of our hands. At times like this, the future looms like a giant black hole.