February 14, 2012

"But he doesn't LOOK Autistic..."

I am lucky to have a lot of friends around the World who have been helping to spread Thor's story. This morning  one of these amazing friends who has been trying to spread this story like wildfire on Facebook, sent me a message...someone had made a comment on Thor's link that needed to be addressed...

"But he doesn't look Autistic..."

If I had a nickel for every time I heard that, I wouldn't need to worry about fundraising for Thor's trip to get his Service Dog; I'd have the money in the bank.

I sometimes forget that there are people who haven't personally been touched by Autism...

Close your eyes and imagine this: You spend years trying to have a child and finally it happens. He is perfect. He develops normally for the first 18 months...and then something happens. He loses his ability to talk. To kick a ball. To hold a spoon. He hurts himself, and needs a helmet to prevent brain injuries. Fear grips you as you realize, "...something is wrong with my baby."   Grief overcomes you as you mourn the loss of your "perfect" child. You must now organize a therapy schedule...nearly 35 hours a week just to regain those lost skills. Life has changed for your family, but you somehow learn to accept and move on. To rebuild your idea of "normal" and to advocate for your child and those just like him.

Despite anyone's doubts, Thor has been diagnosed with Autism Spectrum Disorder  (a neurological disorder) by three different medical professionals:  a child psychiatrist, a speech & language pathologist, and a developmental pediatrician. He was also diagnosed with Sensory Processing Disorder and Extreme Anxiety. Thor has subsequently been seen, and evaluated by, a host of professionals: a second pediatrician, more speech therapists, occupational therapists, and special education teachers, and at no point has anyone said, "...hey, this kid is completely typical and there's no need for concern."

Autism doesn't look like anything.  And that's why it is called an invisible disability.
I don't often write about Thor's quirks and outbursts. I don't need (or want) to write post after post about his flapping hands, spinning around the room as though his life depended on it, or sitting in one spot and making the same noise over and over...for an hour.

I don't want to relive it every time he freaks out from being in a crowd, or our inability to go to places that other families take for granted because it will trigger a panic attack. Or the fact that we're trying to teach him to wash his own hands and it triggers panic in him when it's time to turn off the water.

Autistic people don't look different from neurotypical people. Unless Thor is in full-blown "Autistic mode", zoned out and making his little noises, spinning, or obsessively lining things up, or having a complete meltdown...he looks like any other 3 year old. 

So, to the Facebook commenter, and to those out there who see Autism as a "fad", I say this: while I hope that Autism never touches you personally, I ask for your open-mindedness about what's happening in my family. I am doing my very best to help my son function as best he can, and to help his experience of the world be less stressful for him. This includes getting him a potentially life-saving Autism Service Dog. 

He is Autistic, whether you see it or not.


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