Monday, November 12, 2012

What Do Autistic People Want From Science?

What Do Autistic People Want From Science?
 Autistics Speaking Day, developed in response to an ill-conceived fundraising campaign from 2010 asking people to stop communicating so they could experience being autistic (!). On any day, you get a daily dose of stories about autism-related scientific findings, but how many of these articles include autistic voices? Equally as important, how much autism research focuses on–or even asks–what autistic people themselves, the ultimate consumers of the science, would like to see scientists emphasize?
Having just attended what I think must be the biggest autism research conference in the world, I can confirm that there’s a real dearth of autistic voices in research. Given this paucity, for Autistics Speaking Day, I asked autistic people what scientific research would help them the most. The current emphasis in the research community is on cure, prevention, and treatment. Not surprisingly to anyone paying attention, two of these areas are of little interest to autistics. Treatment that homes in on specific deficits held some value for the respondents, but the top five things they mentioned mostly have to do with help navigating a world that can be quite alien and gaining a better understanding from the other inhabitants of that world. (you may have to cut and paste) 
1. Sensory issues. 
2. Education. 
3. Augmentative and alternative communication (AAC).
4. Social attitudes and how they influence self esteem and anxiety
5. Housing and employment
What you won’t see on this list are desires for cure or prevention or identifying a cause, areas where most autism research focuses. Although some members of the autistic community ..


  1. I am a single mom of a 23 year old autistic young man! What I fear the most is when I am gone, who will care for my son, and how? My son is blessed with verbal skills, but not really problem solving skills. We need a standardized housing program for these people, like we have for the elderly with assited living. If anyone knows of any where they are focusing on housing and care for young adults with A.S.D. please contact me at Sincerely, Jane.... A mom of a young adult with Autism.