This morning, like every other weekday morning, Nigel got on his bike to go to school, Aidan walked to the bus stop to be picked up to go to his school, and I got in my car to go to work. A few miles down the road, I pulled up to the intersection and into the left turn pocket that leads out to the freeway. I could barely see the signal because the sun was directly behind it, blinding me. I tilted my head so that most of my vision was shaded by the car’s visor, and the little red arrow was faintly visible in the thin space between the visor and my rear view mirror. A moment later I could barely make out the little arrow changing from red to green, and I blindly drove forward. I felt like I was driving into the sun.
And it struck me, as I got on the freeway, that for the past twelve years since my son’s diagnosis, that’s exactly how it’s been. That’s how it is for all of us. We are driving into the sun. There are no rules about raising a child with autism! No tried and true methods. What works for one child doesn’t work for another. Because I pursued intensive (but non-aversive) ABA treatments for my son so that we could increase his chances of learning to talk, and then medication to help regulate his behavior, does not mean that I do not accept him as he is. Because someone else does not pursue various therapies does not mean that they do not want to help their child. Because I say that my son “is autistic” does not by any means indicate that I don’t think that there is “so much more to him” than that. Because other parents prefer to say that their children “have autism” does not by any means indicate that they’re in denial. Both ways are valid – and appropriate. There are no rules with autism. We are all living with it the best way we can.
At work a while later, I received an e-mail with a link to this New York Times article. Here’s the crux of it: “Though it [Asperger’s] became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.” How does that grab you? I knew that the DSM was up for revision, but I never thought that this was the way it would go. And you know what that tells me? It tells me that we parents aren’t the only ones driving into the sun. If the “experts” don’t know how to effectively define all of autism’s manifestations, where does that leave us?
It leaves us right where we’ve always been, doing what we’re doing, forging ahead even when we’re not sure if we can. Damning the torpedoes and hoping for the best. Trying everything – or not. Because the bottom line is that we have to do what feels right to us, not what neighbors or relatives think we should do. Certainly not what “experts” tell us to do. Instead, we network, we support each other and our different choices. We respect one another as parents of autistic children, and as parents of children with autism. Because whether some of us go to the left and some of us go to the right, we’re all just figuring it out as we go, trying to live our best lives. And if we all arrive at the same destination, does it matter how we get there?
It’s like with the boys and me this morning, every morning. We all go our separate ways, but at the end of the day, we are home, happy, together. We may do a little driving into the sun while we’re out there, but the day still passes, and we have the harbor of one another to see us through.