Wednesday, 30 July 2008


I had prepared myself for most aspects of Euan's diagnosis, but not for the overwhelming sense of grief that followed it. It was a grief that had stalked Magteld and me throughout the diagnostic process, but for the most part we had shunned it like owners of an errant dog. Now, finally, it was out in the open and we had no option but to come to terms with it.
Two linked questions preoccupied me: where did this grief come from? And, more pointedly, what right did we as parents have to grieve for a child who was alive, healthy and contented?
I found the basis for an answer to the first in Jim Sinclair's essay, Don't Mourn for Us. Sinclair is an autistic man who was unable to speak before the age of 12, yet now travels the world speaking at seminars on the condition. "Autism is not death," he wrote. "Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child... It isn't about autism, it's about shattered expectations."
Sinclair is right, but his essay is far from being a straightforward admonition of parents who grieve for their autistic children. His remarkable insight into the thought processes of parents, if nothing else, nails the lie that says autistic people are incapable of empathy. Calmly, dispassionately and precisely, Sinclair dissects the impulse to grieve and, importantly, identifies it as a normal and necessary stage in coping with autism in the family.
I freely admit to belonging to that class of people who don't share many of the values of Norman Tebbitt. It's almost an article of faith for me to assume that material aspirations are the product of a limited intellectual capacity. And yet what we grieve for when grieving for an autistic child is, as Sinclair says, not the child we have, but the child we aspired to have - the school reports, the exam certificates, the university degrees, the girlfriends and grandchildren they would bring home, all of it suddenly plunged into darkness and uncertainty by the spectre of autism.
Sinclair makes no secret of the fact that this grief, when allowed to fester, can be insulting and damaging for the child. But he also, I think, recognises that grief is fundamentally a healing process, the first stage on the difficult road to reconciliation. His anger is directed not at parents who grieve, accept their loss and learn to deal with the child they have, but at those whose grief runs to despair, who see themselves as victims and seek to apportion blame, who fail to realise that autism is not death, but a way of life.
Euan has never told me what his favourite food is or asked why the sky is blue. That is really what I grieve for when I grieve over autism. But at the same time, I have started to understand that grief is not despair. And autism is not death.

Read Jim Sinclair's essay Don't Mourn For Us here

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