I mentioned earlier this week that I was at a conference. It was the National Autism Conference to be exact. When this conference first began some 12 years ago, there were 300 people in attendance, this year there were 2300. It was a sea of expectant faces, some professionals, educators, parents, children and adults with autism and Behavior Analysts abounded. This year was the conferences largest to date, some people had come from across the globe to hear the latest and greatest in autism research, education and "behavior" techniques.
Care worn faces of parents were everywhere. I realized early on that I had stepped into an almost alternate universe, it is a culture in an of itself. Parents are surrounded by people who bow at the altar of Skinner, words like "shaping," "extinction," and "molding" have become a part of their daily vernacular. Appointments with OT, PT, speech and behavior have become a routine part of life. Gluten free diets, chelation therapy, gamma globulin injections and other medical approaches are offered up on the menu of "hopes." I marveled at the courage and determination within many families, particularly astonished by the children who are whisked into a world where others try to mold them into someone new. They patiently abide the rules of this alternate universe and I imagine hope for a day when no one wishes to "mold" them any longer.
There were some small whispers of "cure," but mostly I observed a crusade to understand. The sea of 2300 faces held the frustration, hopes and heartbreak of some, the "expertise" of others, and the bewildered. I'm still not sure what I have taken away from this experience. I picked up a few things, but overall it felt sad. Rather than working toward transforming a cold an misunderstanding world, it seems that instead many in this army of 2300 wished to transform these children. And I'm just not sure what I think about it. All week I heard about approaches and treatment aimed at transformation, but didn't hear about the feelings and needs of people with autism. I know that each parent there cares about their children's feelings, I'm not insinuating that they don't, it's just not something I heard about during all the conversations about "behavior."
If you're reading this and have some thoughts, please post them. I feel like I'm missing some piece of information which will transform this "mystery" universe (from my perspective) into something that I understand. Please know that this blog is not meant to offend, and I apologize if it has presented anyone with anger, but if you are offended please let me know. Perhaps through your anger I can glean a new understanding.