Friday, April 1, 2011

Celebrating Autism Un-Awareness

We have another off-topic blog post today, for something very close to my heart. I promise the next post will be more writing about writing. Meanwhile, April marks the beginning of Autism Awareness Month. My 9-year-old son and 2-year-old niece have both been diagnosed on the spectrum. Below is an essay I wrote on the subject of how great it feels to be unaware of autism. Thanks for reading, and remember that if you see someone wearing a puzzle piece pin, that puzzle piece represents a person who is loved:

Michael, holding his baby sister
at the top of the sliding board.
(Thankfully, I had my camera
with me that day.)

 Celebrating Autism Unawareness

It’s April – Autism Awareness Month. Time for puzzle pieces, wearing blue and experts who tell us that it’s a neurobiological disorder of epidemic proportions, but nobody knows what causes it. It’s probably genetic, but might also be environmental. But it’s definitely not vaccines. More research is needed.
Personally, I’d like to have an autism un-awareness month. I have to settle for the occasional unawareness day, like the one we had a couple weeks ago. It was a warm, pre-spring day at the playground, and my son Michael, age 9, was chasing his younger brother up the jungle gym. My 18-month old daughter got away from me and followed, up the steps to the highest point at the sliding board platform.
Honestly, if my oldest had not been off with her friends, I would have had her do it. But in a parental leap of faith, I put the baby in Mikey’s lap. He held her tight and smiled.
Then Mikey took his baby sister for her first ride down the big kids’ slide. Then they did it again. And again.
It was a small milestone for the baby, but a very big deal for Mikey. In that moment, he wasn’t one of the 1 in 110 kids diagnosed with an autism spectrum disorder (ASD) that everyone hears about each April.
For one afternoon, he was just a big brother, protecting his sister on the sliding board. It was an extraordinarily normal moment for all of us.
For Michael, his ASD means he struggles to maintain his coordination and balance, especially when at any kind of height off the ground, like on a jungle gym. He also has low muscle tone in his upper body, so he doesn’t always have the strength needed to do simple things, like hold his squirmy baby sister in his lap.
Mikey also has sensory issues. That means he’s easily overwhelmed by sights and sounds, and can’t eat many foods because the textures make him gag. He’s never had a slice of birthday cake. The spray of water stings his skin. Once, he tried for 10 minutes to play in a sprinkler because he saw the other kids having fun too. But it ended the way I should have known it would – with him dissolving into a meltdown.
If you only know autism from the TV’s Parenthood, that show usually gets it right from the parents’ perspective. But in real life, we don’t have the luxury of a fade-to-black commercial break when the tantrums start. The wailing and flailing can last all day. I’m lucky; Mikey’s pretty mellow. He only has one or two meltdowns a day, and they’re not usually physical or long-lasting. I know other parents who have to medicate their children because the tantrums are so frequent and violent.
Mikey is “high-functioning.” (That term makes me think of robots – he’s anything but.) He can speak. Academically, he’s on-target, assigned to an integrated classroom with other special needs and “typical” third graders. He has an education aide assigned to help him through each day because he needs constant reminders to stay on-task.
So I am lucky – I remind myself – that Mikey is able to cry out, “I’m a weirdo!” during a meltdown. He knows he’s different – and if he forgets, he has all the constant reminders.
While consoling him, I’ve tried to explain why he feels different, and that it’s okay. But I have no idea if he understands.
Even with three siblings, Mikey is lonely. He wants friends, and gets mad at me because I can’t get him one. I’ve tried. We just finished 10 sessions of a social skills group. (We called it a “friend-making class.”) I’ve arranged play-dates and signed him up for a special needs sports clinic.
But when he goes to these things, he often pulls away to do his own thing -- crazy dancing, or a word-for-word recitation about how to build a campfire. He can be hilarious. But he can also be inappropriate, like the time he repeated all the “big balls” wisecracks from Wipeout. If we try to pull him out of his little world and help him interact with others, he gets overwhelmed, and the tears well up again.
I already know more about autism than I ever wanted. In addition to Mikey, my two year-old niece was diagnosed on the spectrum just a couple of months ago. So in our family – even as we wear blue clothing, attach puzzle pins to our coats, organize walk-a-thon teams and promote research to identify a cause and effective treatments – we do these things while not-so-secretly wishing for more autism un-awareness days, like that day my son had on the playground. It’s one I’ll hold forever in my heart.
Personally, I think Mikey deserves more of them.

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