Autistic People Need Representation on CA Healthcare Task Force

When it comes to issues related to autism, autistic people have a valuable and unique perspective to offer policymakers. Yet no autistic people have been appointed to the Department of Managed Healthcare's Autism Advisory Task Force. This exclusion should be rectified through the appointment of autistic people to the task force. As direct stakeholders, autistic people need a place at the table when these critical issues are being discussed.

Unfortunately, the problems with the task force's composition do not end at the lack of autistic representation. Several members of the task force have histories which suggest that they are not ideal candidates for deciding on the future of autistic people's healthcare. Rick Rollens has an extensive history of anti-vaccine advocacy. Given that the idea of any sort of link between autism and vaccines has been thoroughly discredited, we question the appropriateness of Rollens' appointment to a panel devoted to healthcare. Autistic people, and indeed all Californians, deserve healthcare policies based in sound science, not discredited pseudoscience.

Another member whose appointment concerns us is Dr. Bryna Siegel. Dr. Siegel has repeatedly made dehumanizing and inaccurate statements about autistic people in various media outlets. These statements include the idea that autistic people "do not understand or are missing a core component of what it is to be human." For the article in which this statement appears, and for other articles in which Siegel makes problematic statements about autistic people and parents of autistic people, see these links:

http://www.usatoday.com/news/health/spotlight/2002/04/10-autism.htm
http://www.nature.com/news/2011/111102/full/479025a.html)
http://www.thedailybeast.com/articles/2012/02/07/asperger-s-over-diagnosed-ill-defined-may-not-be-a-syndrome-much-longer.html

For someone with these views to be appointed to an important position on this panel is quite concerning, as is the appointment of Kristin Jacobson and Lorri Unumb. Both Jacobson and Unumb represent Autism Speaks, an organization which has persistently excluded autistic people from its leadership and failed to represent autistic people's concerns in their advocacy efforts. The organization also has a troubled history of representing autistic people in dehumanizing and exploitative ways.

As it currently stands, the task force fails to represent autistic people, while giving a prominent voice to individuals who hold discredit ideas that endanger public health and who actively dehumanize and exclude autistic people. This can and should be corrected.