Given how many autistic people there are in the world, it's odd how much of the conversation about autism revolves around children who don't exist. The most common such child is the one who is "indistinguishable from his peers." This is the child who will supposedly emerge after successful therapies or treatments for autism leave the child essentially "normal."
This hypothetical normal child is closely related to another, younger one--the 1- or 2-year-old who was typically developing before the signs of autism became apparent. These two types of hypothetical children are linked by the assumption that their autism obscures their "real" selves. The hope for parents is that if the autism can somehow be removed, the real child will re-emerge.
I came across yet another hypothetical child when I was interviewed by Dr. Will Clower on "The Business of Health," a radio program on Pittsburgh's WMNY. You can listen to the interview here, beginning about 28 minutes into the program. Toward the end of the interview, Dr. Clower asked me whether I have any other children besides my autistic son, Sam (I don't). Then, assuring me that he was "the nicest person on earth," Dr. Clower said this:
Some people will hear this, people who are afraid people, they would hear this and they would say, "Ah, you're sticking with one because your probability of having a second one and having your next child be autistic is higher and so of course there's a reason to be afraid."
The first lesson to draw from this is that if someone precedes a question by assuring you that he is the nicest person on earth, it's not likely to be an appropriate question. More important, though, is the appearance of a third hypothetical child, one who bears an even more tenuous relationship to reality than the first two.
By conjuring this child into even temporary existence, Dr. Clower made some dangerous assumptions about the child I actually have. After all, the whole premise of the question is that there is something wrong with Sam, something that my wife and I wouldn't want in a second child. It assumes that the reason to have a second child would be to somehow achieve what we did not achieve with Sam -- a "normal" child. And it assumes that not doing so would be a failure that would further compound the "failure" we had with Sam.
It ought to go without saying that people have or don't have children for all sorts of reasons. (Like most decisions here in New York City, it's based at least 50 percent on real estate). There's no way to know exactly why a couple decides to have or not have children, and there's certainly no reason to draw any conclusions about autism based on those decisions.
It seems equally off base to make decisions about treating autism based on the "normal" children we hope our children will become or once were. It seems to me that this is why a group of autistic self advocates and their allies has tried to rebrand April's Autism Awareness Month as Autism Acceptance Month. Perhaps acceptance seems like a rather uninspiring goal. But when many conversations about you are about how to make the world have fewer people like you, acceptance can seem like a pretty good idea. I believe that many autistic people are asking that we stop concentrating on the hypothetical people and start listening to the real ones.
In our home, the big victory of the week is that Sam rode the #3 New York City subway train for the first time. This was a big deal because it is the culmination of a multi-year effort that began when we discovered that Sam had developed a terrible phobia of the #3. Early on, if my wife or I were traveling solo with Sam, we'd have to enlist a stranger to yell to us from the platform to tell us when Sam's beloved #2 was finally coming. Sam, meanwhile, would be cowering next to us halfway down the stairs because he didn't even want to risk seeing a #3.
Through therapy, social stories, and a lot of games in which stuffed animals had phobias, we helped Sam reach a point where he could stand on the platform and watch a #3 train go by. And then he told us that he was going to ride one with his babysitter. And he did. Today he announced he's planning to do it again in two weeks.
We didn't do a lot of thinking about hypothetical children throughout this whole process. There wasn't much point in wondering whether some other version of Sam -- or some entirely different child -- would have been able to just get on the train. And we know that Sam's achievement doesn't mean that he is about to become a non-autistic child indistinguishable from his peers.
The only hypothetical person we're really interested in is Sam's own best self. There will be other #3 trains he will want to ride, and our job is to help him do so, even if it's more challenging for him than for others. His victories will be won as an autistic person. And whatever they are, they will be enough for us.
For more by Todd Drezner, click here.
For more on autism, click here.