A couple of weeks ago, I was asked to give a short talk on autism. Here’s a rough transcript of what I said.
A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right? (general murmur of agreement from the small audience)
I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned.
If the child study team that gave us the diagnosis had asked that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”)
But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make. At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?
Ask me now, when my son is nearly 17, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”
This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.
It is the same for out autistic kids, even if the path is a bit longer or rockier.
If you are an autism parent, what are your thoughts on this? If your autistic adult (or nearly adult) son or daughter were offered and accepted a cure, how would you feel? How would you feel if they were offered a cure and declined?
(If this topic sounds familiar, it is because this question – and some of my thoughts on the question – were the subject of one of the earliest posts on this blog.)