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.

Sunday, 4 May 2008

First reaction

The first person to use the word autism in connection with Euan was his speech and language therapist. I will never forget driving to the clinic to pick him and Magteld up after his first session. Magteld came out clutching Euan in one hand and a blue folder in the other, wearing that special smile she reserves for awkward social occasions.
When she got into the car I saw the words "autistic spectrum disorder" on the cover of the folder. She told me later she had burst into tears when the therapist raised the possibility at the end of the one-hour session that Euan might be autistic. At the time, all I could feel was a numb sense of bewilderment.
What are the emotions that autism gives rise to in the family of an autistic child?
There is, first of all, an overriding sense of fear. A fear of not being able to cope. A fear of not knowing what to expect. A fear that your child might go through their whole lives as a kind of alien, unable to comprehend the basic social functions of life. A magnified fear of failure: think of the anxiety all parents have that they might not be up to the task of equipping their child for adulthood, and multiply it by 100. A fear that your child might never be able to live independently of you, and a fear that there might be no-one to look after them once you're gone. A fear, all in all, of the unknown, in your life and in theirs.
There is also grief - specifically, what Magteld calls grieving for the child we wanted Euan to be. When Euan was a baby, we looked forward to watching him thrive and flourish as he trod the familiar path of childhood: walking, talking, inquiring, challenging, reasoning, understanding. Then, somewhere in this process, things became stuck. We watched other children learn to talk, ask questions and hold conversations with their parents. We reassured ourselves that Euan was simply a "late developer"; that as a bilingual child (English and Dutch) he would catch up before long; that he was otherwise a bright boy, so it was surely only a matter of time. Being told he was autistic extinguished these hopes: what we thought was a slight kink in the course of his development had turned out to be a shift of direction towards a new and alien landscape. Before we could move forward with raising him as an autistic child, we first had to let go of all our expectations of how his childhood should progress. It is hard to overstate just what a seismic shift this is.
The fear and the grief had their by-products: anger, self-recrimination, helplessness and despair. There were times when it looked as if the cumulative effect would sink our marriage. But there was also relief at finally having a label for Euan's difficulties and a first substantial clue towards solving the puzzle.