Just The Way You Are

I read about the following piece on Valerie's List yesterday.
http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1
Is my child sick or is he different? This is something I have struggled with since realizing that Liam had autism. I say "realizing" because with Liam, there was no definitive diagnosis at first. I went from thinking, "Dear God, just don't let him have autism--anything but that" to "this doesn't have to be so bad."

It turns out it's not so bad and that's what the people in the Autistic Self-Advocacy Network are saying. To me, what's bad or difficult about Liam's autism is trying to fit him into a non-autistic world. This world expects you to answer when asked a question. It expects you to connect meaningfully with your peers, play team sports, sit quietly at your desk. This world expects you to keep your pants on in public. In Liam's world, those things are not important and, sometimes, they're not possible.

Last year, after reading Disability is Natural, I cut back on some of Liam's therapies. I started asking myself some hard questions about why I was forcing him into activities he hated and provided negligible benefit to him. Was it to make him into something he was never meant to be? After giving this a lot of thought, I came to the conclusion that any therapy or activity for Liam had to be justified by one or both of two main goals: that he is able to live independently as an adult and that he is happy. Will he ever have perfect penmanship? Probably not, but is perfect penmanship required to live independently or to be happy? Absolutely not. Does he need to read social cues to live independently and be happy? Yes, so we work on that. I just ended eight torturous months of taking Liam to gymnastics because I remembered that he doesn't need gymnastics to live independently and it clearly wasn't making anybody happy.

All this talk about a cure implies that my son is sick and I'm not sure that he is. He does need support for the parts of his autism that make life difficult for him and other people. When we were having such a hard time last year and I couldn't take him anywhere or do anything without a major shitfest I would have said, yes, he's sick. I came very close to dosing him with psychiatric meds originally meant to calm violent schizophrenics. A change in environment and staff completely turned him around. When we focus on a "cure", we may be doing so at the expense of the kind of support that isn't a quick fix, but helps so many kids like Liam feel comfortable in their own skins.

Speaking of cures, what does all the focus on genetics ultimately lead to? In the case of Down syndrome, it has led to selective abortions. It is possible that the future will not include anyone with neurological differences because they are "sick".

About a year ago, Liam and I got into an elevator. He turned to me and said, "Why are we riding the elevator? We are not disabled." He knows he has autism and that it makes some things hard for him, some things easy for him and lots of things are just the same as they are for any kid. He is more like a typical child than different from them. He doesn't know yet that he is considered by our society to be "disabled" and I will hide that from him for as long as I can.

If I could give Liam a pill right now that would instantly and safely take away his autism, would I do it? It's a monster of a question and if you ask me again in six months I might have a different answer. But today I say no. I will keep Liam--my Liam with all of his frustrating eccentricities and beautiful mysteries. Just the way he is.