TRYING TO UNDERSTAND THE NEURODIVERSITY MOVEMENT
Lately I have noticed a great divide forming on the internet between those of us attempting biomedical treatments for our children on one side, and members of the neurodiversity community on the other. That divide is difficult to put a finger on, partly because, by definition, the neurodiversity community is … well … diverse in composition and beliefs.
As parents, we know that our autistic children are capable of far more emotion than stereotypes portray. I know the gut-wrenching experience of seeing “typical” kids ignore my son, or, worse yet, seeing idiotic adults assume my son is mentally retarded. Members of the neurodiversity community know that same pain, but they seem to feel it is caused as often by the actions or words of anti-thimerosal/biomedical advocates as much as it is by unfeeling members of the general public. It is incumbent on all of us to learn why they feel that way, and perhaps look at ourselves.
One of the most visible commentators from the neurodiversity community is Kathleen Seidel. I have been reading some of her web site, but I need to read a lot more before I feel I can intelligently comment on what she has written. At this time, all I can say is there is a lot I disagree with, but there is also a lot with which I agree. I want to learn more from -- and about -- Ms. Seidel before I condemn or praise her.
Why should I want to learn anything about folks who seemingly believe that autism, Aspergers, and other parts of the spectrum are not so much diseases as the normal condition of their lives? What can these folks teach those of us who treat autism spectrum disorders as diseases for which a cure may possibly exist?
While trying to learn more about neurodiversity, I came upon a blog entitled “Thoughts of a High Functioning Autistic Teen.” In her writing, an extraordinary young woman lifts up her frustration, her pride, and, yes, her anger for our enlightenment. She is intelligent, articulate, and very self-aware. And she does not wish to be cured. Instead, she wants respect for who she has become and who she will become. This teenager deserves that respect.
For those of us who believe strongly in biomedical treatments, it is easy to think it is “the answer” for everyone. Most of us who practice biomedical do so partly because we know that, absent some form of intervention, the odds are that our children would never reach the extremely high functioning level of communication practiced by the teen-aged author of the above-referenced blog. We want our children, when they reach their later teen years, to be able to tell us how they feel about the choices we make in their lives.
I hope the choices my wife and I make for our son may enable him to attain a level of independence he might otherwise not achieve. But I am trying to learn to set aside my arrogance and respect the decisions that others make. I am trying to learn to look beyond my own son when I see another autistic child.