A Mommy Blog About Raising Men, Not Boys.
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Tuesday, October 28, 2014

Everyone Knows What Autism Is

I think most people genuinely believe that, with no ill intent. It's untrue of course. But thanks to Rain Main, everyone THINKS they know what autism is. First of all Rain Main is make believe, so there's that. Plus, I've seen a LOT of autistic kids in the past ten years. I never once met a Rain Man.

Most people's first exposure to autism was Rain Man though, which never occurred to me until recently. A Tom Cruise film gave the nation the WRONG idea. It was a good movie, to me, at the time. It's probably still a good movie. I'm not sure, I haven't seen it since the twins have been alive. Perhaps I would feel different about it. But I understand why, looking at the Rain Man, you'd think that Autistic kids are just a bit challenging and quirky. Maybe need a bit of looking after.

That'd be so easy wouldn't it? Most days I'd give anything for them to be like the Rain Man.

My first exposure wasn't the Rain Man, it was someone's kid where I grew up. Their kid was autistic, and he sat facing the wall staring off into space, sometimes he'd rock. That's what he did the couple of times I saw him. That was autism to me. I suppose that with that burned into my brain from such a young age, anything better than that is DOING WELL in my book.

There are a lot of people on TV I've seen lately who after a long, casual conversation will pop out with "I've got Autism Spectrum Disorder" and the media jumps all over it. The wave it around "Look here we have some Autism for you to see".

But they don't bring the cameras to the severe autism classrooms where the ten year olds are in diapers,and don't do two way conversations. It doesn't make for good TV I suppose.

I've been thinking lately though, that instead of making everyone feel good about Autism, about how not scary it is and oh look here is another person on a TV show who is on the Spectrum, maybe they SHOULD scare you.Maybe it should scare the fuck out of people so that they're aware, so that they understand that sorting out why this happens and what's to be done MATTERS.

You look at a BRILLIANT mind like Stephen Hawking and you think OMG FUCK ALS IS SCARY. LOOK WHAT IT DID TO STEPHEN HAWKING. You see the ALS challenge and see beautiful people posting videos and you see omg THEY ARE GOING TO END UP LIKE STEPHEN HAWKING. It scares you. You donate money. Because you don't want the people you love to suffer and die from ALS.

Autism doesn't kill anyone, so it's never going to be as scary as something terminal. But it wrecks lives. It changes futures. And it destroys dreams. One in 68 children are diagnosed with the autism spectrum disorder. Maybe it's time we gave it some honest, not so pretty attention. My children's future is that I'll take care of them, or their siblings will. At some point they'll end up in a home, which is ANATHEMA to me but I know it has to happen some day. They'll never fall in love, have children, have jobs, have their OWN lives. They have no future other than existing and being loved, which is ok by me but I'd kind of hoped for more for them.

Maybe my wish today isn't directed at you. It's directed at the media. Stop making Autism pretty. Stop showing it's pretty face all the time. Show what it's like at it's worse, and all the in between. Let everyone know what autism really is.

That's probably too much to ask so early on a Tuesday but I ask anyway. A bit ranty I know. I might need more coffee.

1 comments:

Jane Sprouse said...

Thank you Christine Trobbiani Giglio for sharing. And thank you Gidge Mcneal for writing this. Because 1 in 68 children has been diagnosed with a form of autism, so many more of us with autistic children (and adults) in our families acknowledge and share your concerns. Unfortunately more and more people are becoming aware firsthand with how this affects everyone. But fortunately there are more and more opportunities for treatment and care of our loved ones and hope for their futures. We all need to make ourselves more aware of how we can help. Thank you Gidge.

I posted this on FB. I have a great-nephew (great in lots of ways who is autistic and is making good progress. He will be 5 soon. Thanks for all you do. Jane