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Two Autisms?

April is autism awareness month, and The Free Lance-Star today ran an editorial from UMW professor Chris Foss on the disability. Foss brings up some interesting points about autism groups, like Autism Speaks, raising money for cures rather than improving the lives of people with autism. And Foss talks about the possibility of one day celebrating autism, sort of like left-handedness. The idea intrigued me, as growing up my brothers’ left-handedness was treated as so special that I was sometimes jealous. They had to make some adjustments–like using the green scissors, sitting in certain places at the dinner table, holding the pen a certain way so as not to smudge the ink–but we often heard about how left-handed people were smarter, more creative and innovative. I have a hard time picturing someone wishing they had autism, but I guess it could happen.

The column was very insightful and brought out a lot of different sides to autism.

This morning, I read Foss’ column wearing an Autism Speaks t-shirt. So I’ll be upfront about my support for the group. I would love to see a cure for autism. But I also agree with the point that more money needs to go to improving the lives of those who have the disorder.

And I absolutely support the idea of celebrating people with autism. I am lucky enough to live with two boys who have varying degrees of autism, and I cannot tell you how much they enrich my life. As Foss points out, if there were better supports in place, I could spend more time appreciating that and less time worrying about taking care of my sons. But it is impossible to choose supporting autism over curing it, because the disorder is so complex. And while the heightened sensory abilities, different way of thinking and other abilities that come with autism could benefit the world, there are also a lot of downsides to autism.

It boggles my mind that the same disorder that makes my 10-year-old son unable to turn in his homework, clean his room without a detailed list or make friends also makes him able to find his way absolutely anywhere (since he was 3, I’ve eschewed MapQuest for what we call BenQuest at home), do math equations in his head and remember the score of every Super Bowl ever played.

Think of any great but somewhat quirky leader, inventor or scientist and I can assure you they’ve posthumously been diagnosed with Aspergers (a high-functioning form of autism). It must be much easier to diagnose a dead person, though. Ask any parent of a child with high-functioning autism and they’ll tell you a horror tale of getting a diagnosis. We were lucky to get one early, but in the intervening years, Ben’s received many other labels from doctors who didn’t understand Aspergers.

And what completely blows my mind is that the same disorder that gives us BenQuest renders my older son unable to speak. He still wears diapers, needs to be reminded at every dinner to use a fork.

Don’t get me wrong, Xander is one of the most amazing kids. He is charming, happy and vivacious. But sometimes, I wonder what that personality would be like if not hampered by autism. If he got the same chances every other kid got.

And, selfishly, I wonder what my husband and I would be like if like other parents we worried about drivers’ licenses coming up, grades, first dates instead of wondering how we’ll wash his hair now that he weighs more than we do. I wonder what we’d be like if we didn’t routinely wake up at 2 a.m. wondering who will take care of him when we die, if we’ll ever get to retire. What we’d be like if we went on dates, long weekends away or had arguments other than over whose turn it is to clean the poop out of the carpet.

And while sometimes parenting children with autism feels like the loneliest job on the planet, the crazy part is we’re not actually alone. One in 150 children have it. One in 94 boys have it. There are a lot of parents waking up at 2 a.m. Maybe that’s the best time to have an autism support group…

Because of those numbers, because of our worries, I still think working for a cure is important. Barring a miracle, it won’t help my children. But I’d like to think that one day, some mom will sleep through the night gratefully.