My friend Shannon Des Roches Rosa posted a great piece regarding understanding acceptance on Thinking Person’s Guide to Autism the other day. I wanted to write a comment, but had to think about what she’d written and then wrote a long, epic length, rambling comment, so lengthy that when I went to submit it I was informed I’d “timed out” and lost the whole thing. But it got me thinking…
Whenever I think of acceptance the “serenity prayer” comes to mind – “…grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” This prayer was what I repeated to myself each and every day for years after we were given Emma’s diagnosis. “Courage to change the things I can” was what I clung to as I doggedly pursued treatment after unproven treatment. One of the single biggest stumbling blocks for me in accepting my daughter’s “autism” (I write it this way, because this was how I thought of it, as something separate from her) was that I believed it was within my power to change her autism. I thought I could remove it. As long as I continued to hold onto that belief, I couldn’t accept her autism or the idea of her as an Autistic individual, she was Emma who was diagnosed with autism and therefore, my thinking went, could also be diagnosed withOUT autism. These two points were key in my thinking. Anyone who suggested I not think of my daughter and autism in this way were disregarded.
I no longer think in these terms. But I read the often heated exchanges between parents who accept autism and their Autistic children, and those who maintain they accept their child, but do not accept autism. Interchange the word “accept” for “love” and things start getting really volatile. None of us welcome anyone who suggests we do not love our children. And truthfully, this is where, I think, the disconnect happens. I think this is less about love and more about having a different understanding of what Autism is. If autism is seen as completely negative, (something Autism Speaks has perfected to a science by using words such as, affliction, epidemic, crisis and tragedy) this horrible thing that causes my child to writhe in agony, an “affliction” with no redeeming qualities, coupled with the belief that autism is something that can be removed, in fact has been removed by many parents who have gone on to write memoirs about their triumphant courage to change the things they can, then what parent wouldn’t welcome their child relief from that?
But if Autism is seen as something complex, woven into the very fabric of a human’s being with a wide range of attributes as well as challenges, all of this becomes far more complicated. It was this idea, so beautifully described in eloquent detail by Julia Bascom in her blog Just Stimming that made me pause. Her description of the challenges and joys of being Autistic were what made me stop and reconsider everything I thought I knew and believed. As long as we hold to the view that our child is locked inside a seemingly impenetrable shell called “autism” while listening to that seductive, whispering voice assuring us that we can break through that shell if we just try x, y, and z we will struggle mightily with the idea of acceptance.
Emma – 2002