My friend, Kelly, calls me a "shades of grey" person. I like that she notices, because that's how I view myself. My world is full of grey. I was much more certain of things when I was younger. With each "trip around the sun," as John says, I find the world is more complicated.
I'm reminded of this at the moment because April is "Autism Awareness Month." I follow multiple autism facebook pages and blogs, and read a great deal in the news on the subject. The subject of Autism Awareness has become controversial. Thoughts range from autism research and support groups looking for cures and therapies, to autistic bloggers and advocates who want everyone to embrace autism as a neuro-diversity issue.
Me, I'm in the middle once again.
When Alex was first diagnosed with autism, there wasn't much of a conversation at all. Autism was relatively unknown, and the incidence rate was thought to be 4 in 10,000. I didn't like much of what I read, so John and I were left to figure things out on our own. Very early on, we knew that chasing every promised "cure" was a potentially dangerous endeavor. At the core, we never wanted Alex to feel that we had to "fix" him because he was "broken." Every "therapy" we pursued or designed was to make his life more manageable and to help him feel secure and loved. Some behaviors we worried about when he was younger, we no longer worry about. We don't care if it bothers people when he flaps or vocalizes. He is who he is. We ask him to be respectful in a restaurant or theatre because we think it is important, but Alex's behavior may still look different from other people's. We're okay with that.
So I do bristle at the thought that he has to be fixed.
On the other hand, I can't simply embrace his differences as a matter of neurodiversity. His autism often makes his life harder for him. When he was going through puberty and would have episodes of self-injurious behavior so severe he would rupture blood vessels in his eyes and bruise his own face, that's not just a difference. His autism means we can't communicate with him about his cancer and aren't sure what he's experiencing or even if we're supporting him in the way he wants to be supported. Autism has often been unkind to Alex. He won't go to college, marry, have children, or even live completely on his own. So no, I can't jump on the bandwagon that says all is well, embrace the diversity.
So what do I wish people knew about autism? I wish they knew that sometimes autism is cruel. It is cruel to the individual and to the family. It robs us of our dreams. I also wish they knew that being different is okay. I wish they knew that the success stories aren't only the ones where children become "indistinguishable from their peers." Success can be a young man living away from his parents, establishing relationships that mean something to him with roommates, co-workers, friends, and caregivers all of whom are outside of his family. Alex isn't only his autism but, at the same time, it is an integral part of him. I wish his life were easier, but I don't wish him to be different.
Alex's life has value. He is a worthy person who contributes to the world around him. People often tell us that Alex is lucky to have us. They've got it wrong. We're lucky to have him.
Shades of Grey by the Monkees. Give it a listen.
https://www.youtube.com/watch?v=SubpzqswJRE
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