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.

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