Is it splitting hairs to debate what we mean by “autism?” The other night I was at a party where there were many people with autism, and the conversation was around the demonization of autism. The whole thing began with a friend asking me to take a stand on Autism Speaks. I told her that I have some very good friends who work for Autism Speaks. I also have some dear friends who hate Autism Speaks. I have been in both camps. I was on an Autism Speaks subcommittee for a short time, and so back then I thought AS was doing a few good things. Before that, and since, I have heard far more criticisms of AS than positive comments. Mostly I hear that Autism Speaks, primarily Suzanne Wright, the AS co-founder, make some very devastating remarks about autism and completely refuse to see the richer complexity that is autism. She only sees the bad and difficult. She makes no room for the good, the interesting, the difference given to us by autism. The Autism Speaks anti-autism mantra is mostly polarizing and not at all productive. Particularly when we hear that only the tiniest percentage of their take goes to helping people with autism…
What is the complexity I’m referring to? I am going to describe this dichotomy without judgment. My basic (oversimplified) explanation is about the rift between autism parents and autistics themselves. First of all, I need to say that they are often one and the same. You can be both. Perhaps more often than not, autism parents are autistic themselves. But that’s just one point here. The rift is not about that, it’s about recognizing the difficult — sometimes soul-sucking — aspects of caring for an autistic person who has many challenging needs. Usually, autism parents will mean things like their autistic child wears diapers way beyond the usual age, or that they smear feces, or that they are aggressive, or that they are completely out of it, unable to communicate. These parents’ lives are hard and sometimes full of despair. Their autistic children’s lives might be as well — if they are aggressive it is because they are trying to communicate something important, like they are in pain, sick, frustrated, uncomfortably overstimulated, and other reasons that bear exploration.
The autistic adults who can communicate often tell me that yes, they have a disability. More often, though, they describe themselves as having a difference. They use the word “difference” because it does not have the negative baggage of the word disability. It has no implication of disease, illness, or of something being wrong. They do not deny that some parents of autistics have a lot of difficult and painful stuff to deal with in caring for their children. But they deny that this is what autism is.
If you begin to see autism as a neurological difference, rather than a harmful disgusting disability, you start to feel proud of your autism. Or at least accepting of it. Or perhaps you would feel proud if society, Autism Speaks, and the DSM would let you! It’s as if the word has been ruined by society — people like Suzanne Wright — lumping aspects of autism – sensory overload, communication trouble, social deficits — with aspects that can be experienced around autism (like resorting to aggression or fecal smearing or cognitive delay). The autistic adults I have spoken to often feel that it is autism that gives them particular skills, talents, insights that other non-autistics do not have. They say that the difficulties in their lives due to autism are the things they want to change. But they do not blame autism in general. I think people use the words “co-morbid symptoms of autism” in this case.
What’s happening here is not hair-splitting. It is separating out very carefully the aspects of having autism are the parts we would like to improve. But the difference aspects of autism are the parts we should not dismiss, and in many cases, we should illuminate, explore, and honor.