Tag Archives: John Elder Robison

John Elder Robison Speaks | I Hope the Autism Community is Listening

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.

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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.

ImageThen 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?

Your thoughts?

 

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Various Voices of Asperger’s

I am so happy I stumbled across Stephen Borgman’s wonderful article in Psychology Today from back in 2011! He talks about some fabulous teachers he’s learned from. I kept nodding my head as I read, recognizing name after name, and when I got to John Elder Robison’s name I went nuts.

I recently finished reading “Look Me In the Eye” and yesterday I bought “Be Different.” I would so love to meet John. To have my son talk with him. To have John Elder Robison come and talk to the individuals and families in our Asperger’s support group. He’s truly inspirational.

Anyway, read Borgman’s article and check out the teachers he talks about. Each one has a unique voice and perspective on ASDs. These are the experts who have a lot to say.

http://www.psychologytoday.com/blog/spectrum-solutions/201103/have-you-met-my-seven-aspergers-teachers