Sunday, 11 May 2008

Relief and reality

Relief might sound like a strange response to the news that your child has a lifelong, potentially debilitating condition for which there is no cure. But that was exactly how Magteld and I reacted to the news. It was as if we had been fumbling around in a darkened room for four years and suddenly somebody had switched on the lights. We understood for the first time what we were dealing with.

There is widespread resistance among teachers and carers towards labelling people, particularly when it involves young children. The sentiment is well meant, and in the sense that it's a reaction towards the historic tendency to define people by their limitations rather than their capabilities it's well founded. But as Clare Sainsbury, who has Asperger's Syndrome, comments in her excellent book Martian in the Playground, "someone with undiagnosed Asperger's still has Asperger's" (the difference between autism and Asperger's is hazy, and most professionals seem to treat the two as different manifestations of the same condition). For us, a label wasn't a branding iron but a key to understanding Euan's behaviour.

When the nursery first raised the subject, autism was one of the first things that cropped up in our minds. We considered it, and dismissed it. We were aided in our denial by well-meaning friends and relatives who reassured us that Euan couldn't be autistic because he was obviously intelligent, or remarked that he was just a happy, self-sufficient little boy. Neither of these, as I now know, precludes autism.

As perverse as it sounds, it was easier to deny the truth and look for some deficiency in our child-raising techniques than to accept the reality of having to care for an autistic child. Magteld and I blamed ourselves and blamed each other; we tried to shake Euan out of his entrenched routines and his closed world, sometimes literally. We waited with growing impatience for his speech to catch up with other children of his age. We felt ashamed every time an adult spoke to Euan and he looked up at them blankly, or when we watched him at birthday parties, standing mutely at the side of the room or absorbing himself in the workings of the CD player while other children joined in pass the parcel. His interests became obsessions, sometimes built around intricate and meticulous routines, and any attempt to divert from them triggered a storm of protest. The plain truth is, we barely knew our own son.

When I say that autism is incurable, I don't mean in the sense that science and technology haven't quite round to overriding its effects, and it's just a matter of waiting. My belief is that autism is incurable because one cannot simply isolate and remove the autistic element from someone's neurological system. For an autistic person, autism is their system. It can be managed and alleviated, but never "cured". For this reason, having the right label is crucial to our chances of bringing up Euan successfully.

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