Saturday, April 02, 2011

They Don't Speak For Us: A Spectrum Saturdays Post

I've tried to write this post a bunch of times.  It just never comes out the way I want it to.  I don't want to be preachy.  Autism can be a huge pain in the ass as a parent, and I'm pretty fortunate that my kids are fairly high functioning.

But here's my deal:  I really don't like Autism Speaks.

I don't speak for the Autistic.  I don't speak for all Autistic parents.  Some days I'm lucky if I can speak for myself.  But I have to tell you, I do have issues with groups like Autism Speaks.  Why aren't there any adults with Autism on the board?  Why do they have to play on pity on fear to raise money?  Where does that money go?  Why do I feel like they're trying to marginalize my kids?

Honestly, I don't expect my kids to be "cured" of Autism.  And if I had the cure right here in my hand (which, I dont) I don't think I'd use it.  How much of my boys would I lose if I did?  How much of them is impacted by their Autism?  Which isn't to say that they are solely defined by the disorder.  Trust me, they're not.  But Autism is a part of who they are and I love who they are.  All of it.

My job is to give my kids the tools they need to navigate the world.  And they can see this world however they want to.  Today Ciaran used the toilet.  Something he does most of the time, these days.  And he made sure to lift his skirt so he didn't pee on it.  Go Ciaran!  See?  He's doing awesome!

This will not destroy me, my children, our family, or our lives.  Autism Speaks does not speak for my children, my family, or me.



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