Speak for yourself!

  Georgia may be getting out of mic work today simply because I cannot string more than three words together without coughing up my spleen. I'm considering making up a turban soaked in Vicks VapoRub and wearing it EVERYWHERE until after flu season. I'd be like Professor Quirrell walking around with a smelly Voldemort on my head, only hopefully the VapoRub wouldn't be hissing orders at me to kill Harry Potter. After a few months of donning my odiferous headgear though, I imagine someone might want to do ME in!



  And speaking of things that don't smell quite right, I have only recently been made aware of some information that Autism Speaks isn't exactly the organization I believed it to be. (Shout-out to PDDWorld/Moms!) Now, this blog was never intended to be used as a forum for promoting, or bashing, any particular agency or therapy that might believe itself doing good deeds to further autism awareness, or improve the lives of those on the spectrum. But A.S. evidently has only just begun using the term "awareness", having been founded on the premise of "curing" autism by funding a ton of research to that end. They seem to be trying hard now to cover their tracks, as the autism community at large has called them on it. As I've seen on the Autism Self Advocacy Network site, ("Nothing about us, without us" http://autisticadvocacy.org/ ), it's not a cure they want, but acceptance. Being autistic is being themselves. This was echoed in an old NPR interview I dug up where a young man on the spectrum said "What the rest of the world needs to know about autism is that it's not something that can be separated out from the person, it's part of the person. And so you cannot meaningfully say I love my child, but I hate the autism. That's like saying I love my child, but I hate that she's a girl and I'd like her to be a boy instead." When asked if there were a cure for autism, would he take it, he answered "No. Never will. I love the way my brain works."


  On the A.S. site under "initiatives" they state "...In fact, many experts agree that a collaborative approach to autism research is the only way science will solve the mysteries of this devastating disorder." The definition of "devastating": 1) highly destructive or damaging. 2) causing severe shock, distress, or grief. The synonyms are destructive, and ruinous. You can see why someone on the spectrum might take exception to the A.S. approach. Now, the man in the NPR interview did state that he knows his life would be "easier without his Asperger's. He would understand social cues. He would get along better in work and everyday interactions." But he's "come to like being autistic. He even celebrates it." I know there are parents out there who might have felt shock, distress, or grief at first hearing a diagnosis of autism, but that doesn't mean the child's life, or the family unit ends in a ruinous state. For me the diagnosis was just validation, and then it was time to keep seeking out therapies which could help Georgia unlock all of her potential. I am not a shout-in-the-streets activist. I just quietly go about my business. So if Autism Speaks is shouting for a cure for autism, I will shout back in the form of not funding their research.

   A friend of mine with an Aspie son told me "You know the saying, 'If you've met one kid with autism, you've met one kid with autism.'" I do not claim to know all there is to know about autism, or every intricate detail of every advocacy group. I've done enough research to know that I don't know half of what's out there! What I do know is my child. I do know that, even though I want to help her overcome her learning problems, I do not want to help her overcome who she is at her core. She's silly, and goofy, and funny. She talks incessantly, (and obsessively!) on the way home from school. But sometimes she says the most amazing things! Yeah, sometimes she's a pain-in-the-ass, (Yep. I said it out loud.), but I usually put most of that down to being a teenager. The autism thing I can handle. This teen thing? OY VEY.