The icare4autism conference ended this afternoon. It was a whirlwind of activity spanning 48 hours of discussions and presentations led by scientists, therapists, neuroscientists, policy makers, parents and advocates. Stephen Shore, who is Autistic, gave the single most entertaining presentation, entitled: Employment Opportunities for People with Autism: Observations on Promoting Success.
On the first day I interviewed Henry and Kamila Markram, the neuroscientists who came up with the Intense World Theory of Autism, the only theory I’ve read and heard that makes any sense and which validates my own observations of my daughter, Emma. Yesterday I spoke with Joshua Weinstein, the CEO and President of icare4autism. He seemed genuinely interested in hearing from people. He actively sought out suggestions, made himself available to anyone who approached him. He seemed sincere in his desire to bring scientists, therapists, parents, researchers, educators and advocates together.
The organization’s weakest point is in having Autistics on their advisory committee. According to the sheet I received there aren’t any, and only one Autistic person, Stephen Shore, was at the conference presenting. Perhaps after today’s conversation that will change. I hope so. I would like nothing more than to write glowingly about an organization that carries the word “autism” in it’s name. I spoke out whenever it seemed even remotely appropriate. But by the end of the conference I had made my – Autistics must be included in this organization -speech more than a dozen times. Only once was I met with any argument and interestingly enough, that one time was from a parent of a “severely autistic child” as she described him, who was furious with me for suggesting we needed to move beyond the autism = tragedy model.
There is tremendous misunderstanding surrounding labels and the designations of low, high, severe and mild. It was clear that people do not understand why these labels are unhelpful and the terms were thrown around a great deal during a number of the presentations I attended. Another huge misperception surrounds intelligence or “lack” of in Autism. I was astonished to hear the words “mental retardation” used in connection with autism during a couple of the comments from the audience. I hadn’t realized that was still thought, by many, to be synonymous with autism.
The really good news is, I heard questions surrounding the “ethics” of various treatments and interventions for Autism and I was relieved to hear a number of people talk about the abuse, mistreatment and need for greater advocacy among the Autistic population. Of course the best advocates are Autistics themselves and so I hope icare4autism will heed some of my suggestions. I was not the only one making these suggestions, by the way. There were a number of people, including Stephen Shore who was wonderfully articulate in his opinions and ideas, who brought up the need for Autistics to represent themselves and the importance of Autistics to be involved in all levels of any organization that carries the word autism in its title.
Finally, I miss Emma terribly and cannot WAIT to see her this afternoon.
Em in the playground