It’s a regular part of my life to work with families who have just learned that their child has autism. Sometimes they are given this diagnosis gently, sometimes not.
Used to be an uncommon diagnosis. Not any more. Used to be people didn’t know anyone with autism. Not any more.
When I was 19 or so, I was floundering around making uninformed decisions, trying to figure out how to live my life without a plan. I worked for awhile with a family as an au pair (completely untrained). They had four children and another on the way. I have no idea how I got that job.
Their 10-year-old had autism. He said “lugadabugadoo lugadabugadoo” repeatedly. He rocked on his heels. He knew the names of every radio staion in the Los Angeles area. He liked to run water over his hands in the bathroom while reciting the names of the radio stations.
He and I were pretty good friends. He followed me everywhere; I taught him how to jump rope. Not very well, but still, I felt that we had made a happy and mutual connection.
That was a long time ago, and since then his family will have made decisions about his life as an adult. He was not a kid who was likely to grow up and live independently, but he was fortunate to have a family with the resources and the emotional stability to work hard on his behalf.
Used to be, people didn’t have a picture of what autism can look like. Now they do. They’ve seen the specials on TV, they’ve looked at the websites. They’ve got neighbors and cousins. And the possibility that their child with autism might be rocking, head banging and utterly dependent on them for life is understandably frightening. And is one possibility.
When I had cancer as a kid, my parents were told that I would probably die, and that was probably for the best, because if I lived I would be brain damaged from radiation and hideously disfigured. Which made me, for some time, the official family tragedy.
So unnecessary, so wrong. But while experts don’t want to hand out false hope to young famlies, we can unintentionally be damned generous in handing out despair.
When I hear from my families that their kid just got a life sentence of autism, I know the news was delivered by the fact doctor and not from the heart. Makes me want to smack my colleagues in the head, remind them not to be automatic, not to crank out that diagnosis like we’re working in a fast-food line.
I will probably not use this blog to talk much about my profession. But there is this overlap for me and my personal history, as I try to guide these moms and dads back to their own child, the one whose future has not been nailed down by a stranger with a simple, reductionary label.