Labels to live by

Late last week I came across this short film, nominated for "Best Documentary Short" at the 2009 Woods Hole Film Festival, and made by a brother about his own brother, who dealt with undiagnosed Asperger's and accompanying depression for 30 years of his life. I watched the video on the same day I found out about a bullying incident at school with L. and I was in an emotional, Mama Bear state. Somehow the video lifted me up, and depressed me at the same time; but it is amazingly done. Click the link and watch--it's less than 10 minutes, and so worth it. I think the film makes the best argument I've come across yet for how important--how life-enhancing and life-saving--diagnoses can be, especially when help is out there early for young children.

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When we found out about L.'s Asperger's, one month before his seventh birthday, we felt many things--shock, numbness, confusion, worry, but also overwhelming relief. I think out of all the many emotions swirling around in our heads relief was the one that stood out, and separated itself from the rest. We had been wading through a cycle of what felt like dark and at times genuinely scary swirling muck for years until that point, and our feelings about the diagnosis could only be described in clichéd ways: it was a life belt thrown to us; a beacon of light in a dark cave; an open door. It was, as I told a friend, like finally hearing an English word spoken to you after months and months of hearing nothing but indecipherable gibberish crowding you out.

Yet--people asked us, aren't you worried about labeling him? How will he feel?

We have never, ever seen L.'s diagnosis as a label. It's a diagnosis, like any other, one that helps us understand him better, in order for us to help L. understand himself, so we can make this business of life just a little easier for all of us. Many children with an autism spectrum disorder also have some type of accompanying (comorbid is the term) issue--depression, sensory integration problems, or anxiety, for instance, like L. does. It's often not the autism alone that makes life so unbearable sometimes, so frightening, so confusing, so difficult, but those secondary issues. And, as the short film captures so well, there is not only something unspeakably awful about watching your child suffer, but also about being that child, and growing up feeling the isolation, and feeling at odds with the world around you, yet not knowing why.

You do things as a parent with an eye always to the future. You teach your kids good eating habits, ones that will carry them into adulthood. You teach them lessons you hope will protect them, you gather them onto your lap and read them stories, knowing you are planting in them a seed that will blossom into a love for reading, and writing, and books. In accepting L.'s diagnosis, in learning about it and working with it, I like to think we are similarly investing his future; that we are handing him the tools he will need to carve out his own place in the world--a world that might be just a little more complicated for him than it might be for all the rest, a world he constantly shies away from, a world that's out there, waiting to take him in.