As the mom of a teen with ASDs, I know I am fortunate. My son needs some supports but he has great strengths and gifts, too. Yet I can understand how families whose loved ones are more severely impacted might welcome medical advances that would perhaps give their child speech or help draw him out of his shell, etc. With a spectrum disorder one size does not fit all.
Today I attended an informational hearing with California State Senator Lou Correa and members of the State Senate Select Committee on Autism & Related Disorders, where folks from UC Irvine’s Center for Autism Research and Translation (CART) and the Center for Autism and Developmental Disorders presented their request for support from the state for their research efforts.
I sincerely hope that an organization with its power and sway will equally see the merit of providing as much raw enthusiasm and funding toward support services for individuals with autism as they do for research into a ‘cure.’ As it stands, right now there are scores of people in need of services ranging from speech and occupational therapy to job coaching and independent living skills. Right now.
Then I come home to discover that John Elder Robison has severed ties with Autism Speaks. Among the irreconcilable differences he cites is along the same lines as what I stated above regarding the need for services for individuals with autism: ‘…Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised. …’
Read his entire statement here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html
Wow. Mr. Robison’s actions speak volumes.
Check out the numerous comments to Suzanne Wright’s article. http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
While I have applauded many of the efforts of Autism Speaks, as the mom of a 17-year-old I can totally understand where Mr. Robison is coming from.
Maybe the best solution doesn’t have to be a zero-sum game. Can’t we have balanced efforts into treatments/supports and research? Since when did they have to be mutually exclusive?