As I fantasize about a world in which autism is not consider a “bad” thing, but instead is seen as yet another type of neurology with its pluses and minuses, I continue to rewrite the “ideal introduction to autism” with the hope that one day this may actually be a parent’s experience. I can’t imagine what that would be like, but I know for a fact, it would be a hell of a lot better than the very real, very upsetting, confusing and painful introduction to autism that I was given almost ten years ago.
First off, the literature regarding autism… more and more there are books and blogs (!) written by Autistic people introducing the idea of autism as another kind of neurology with both innate challenges and wonders. I’ve listed many of them on the Resources page on this blog. As there were no blogs (written by Autistic people) that I knew of in the fall of 2004 I went to Barnes & Noble and bought pretty much every single book written on Autism. Some would say that was my first mistake, as I was greeted with nothing but gloom and doom. Other than Donna Williams and Temple Grandin, all the books were written by non autistic people about the dire, horrors of autism and what that meant for your child. (And none of it was good.) Autism was most definitely not something to celebrate.
The idea that autism could be seen as anything but terrible was not even a radical notion, it was a thought that hadn’t made it into the public sphere. When Emma was diagnosed the big names associated with autism were Andrew Wakefield, Jenny McCarthy and Bernard Rimland. It was impossible to read anything about autism without those three names coming up. Parents new to all of this, fumbled around trying to make sense of the various thoughts about cause, was it really an epidemic and how to best serve our children who were said to have been snatched from our protective arms. I’ve written about the depth of my fear during those first few months that turned quickly into years in numerous posts on this blog.
My fantasy is nothing short of radical, but perhaps one day it will not be seen as such, but instead, will be commonplace. My fantasy introduction to autism begins with the evaluation. At least one of the therapists who came to our home in September of 2004 would have been Autistic. Once it was thought my daughter might occupy a place on the Autism spectrum, more Autistic therapists, social workers and psychologists would have come to conduct the evaluation and talk to us. This, then, would have been our introduction to autism… meeting actual Autistic people, who are able to articulate what the challenges are and what the joys are! People who could offer a balanced view of a neurology that I would be able to identify with and see there was overlap with my own. People who would gently encourage me to review my own neurology and see that my daughter’s experience and processing of the world, while different from mine, has many similarities. People who could help me so that I was in a better position to be the mother my daughter needed me to be.
After the evaluation and diagnosis had been made, we would then be given support in finding at least a few Autistic people who were in the profession of working with families with Autistic children. In my fantasy, Autistic people would be among those creating schools, designing curriculums, teaching academics, conducting seminars for us, the parents of Autistic children, to attend so that we might better help our kids. It seems to me a radical shift in all aspects of autism, what is said about what it is to be Autistic and what is being told to those who are non autistic, needs to occur. My dream team would include Autistic and non autistic alike, but it would be a blend of those who presume my child competent, who treat my child with respect, who are interested in my child’s well being and want to work towards her strengths, encouraging her to be all she can be and cheering her on.