Whose decision is it?

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.)

0 thoughts on “Whose decision is it?

  1. Thankfully, that question, that possibility, will never be offered for me to decide as the two children in my life affected by autism are my grandchildren. But were I to be in the position of choosing, knowing what I know now a year after diagnosis of the granddaughter, now age 4 1/2 and a month since the diagnosis of the grandson, who will be 2 this Sunday, I would say no the granddaughter and probably for the little guy too. Unless, that is, this pill could be selective -eliminate the meltdowns for openers and for the little guy, allow the speech and comprehension to come through. But really, even though we have no clue at all how either of these two will do later in life -you don’t know that with NT kids either though -and I’d love to do whatever I could to make things easier, better for them, “curing” the autism probably wouldn’t be the best thing overall for them -or subsequently, for us, their family, either. Too much beauty and so much opportunity to see, to learn, to appreciate them for who they are deep down inside. It may be a huge learning experience for these children, at times fraught with difficutly, and it is equally the same much of the time for parents/grandparents/siblings too but I think in many instances it is us who learns the most in the end.

Leave a Reply