Monday, July 25, 2011
Pulling Back The Curtain On Autism... no miracles here...
I've kinda touched on this in previous notes & comments, but something made it pop in my head again so here goes....
People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...
And lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. Theyre just a little quirky like the aspergers rocker on american idol.
I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-pottytrained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.
I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..."
I know there's always a lot of controversy around Autism Speaks and I'm not a fan of alot of what they do, but I will say this. I have no issues with AS with the way they portray autism. others in the aspergers community feel that AS doesnt represent them, and maybe it doesnt. but it does seem to represent those with severe debilitating autism. my son has SEVERE autism...
What also gets me is when people tell you about something they read, like music therapy or horse therapy or dolphin therapy.
"Have you heard about that? I've heard great things about that..."
They're thinking that it's a way towards a cure or healing these kids...
And while my son enjoys music therapy and might love horse & dolphin therapy, we know it's just another fun activity and in the best case scenario he'll pay attention and maybe get something out of it... but we're not expecting something magical or miraculous to happen
Like we got our autism service dog, Paula :-). And we were realistic in our expectations. We hoped that it would help with some safety issues and maybe Kyle would build a relationship and have some empathy towards another creature. And it's worked out nicely. It's still alot of work but totally worth it.
But people ask me about the dog DAILY. And I can hear in their voices when they ask the questions that they were looking for / expecting a miracle.
No miracles here!
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