Controversies Surround Autism Speaks

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Bob and Suzanne Wright, founders of Autism Speaks

Bob and Suzanne Wright, founders of Autism Speaks
Jemal Countess/Getty Images North America

Autism Speaks is an organization whose mission has been dedicated to research in the prevention and cure for autism. This week, several autism advocates have been protesting in response to the Autism Speaks first-ever national policy and action summit in Washington, D.C. Many of these advocates have expressed frustration that the voices of autistic people have not been included at similar events and that Autism Speaks, as an organization, has yet to meaningfully include autistic perspectives in its work overall.

The announcement of an “action summit” by an organization which seeks to prevent and cure autism, and considers autism a tragedy, has caused a great deal of concern. Many advocates are asking what kind of an autism action summit this can be without the voices and perspectives of at least one autistic person? Autism Speaks’ Founder, Suzanne Wright posted a statement on the Autism Speaks website (you can view it in full here) about the action summit. Ms. Wright said,”This week is the week America will fully wake up to the autism crisis.” Her statement was meant as a call for action from politicians, but it is not really clear what action she is requesting. Lamenting that loved ones of autistic people are burdened, Wright says that parents are lucky if they get any sleep or even stay married due to the hardships of having an autistic child.

After learning about the Autism Speaks event and protests, news came out that Autism Speaks is welcoming the Judge Rotenberg Center (JRC) as an exhibitor at an upcoming resource fair. You can read more about this here. The Judge Rotenberg Center has been a major concern for us, along with several other organizations and advocates across the globe, for several years. The JRC has operated for decades, using controversial treatments that many consider abusive, or even torturous. A representative of the United Nations (UN), and some US lawmakers, have expressed deep concern over the JRC practices.
In the midst of all of this news, we were informed that John Elder Robison, long referenced by some advocates as “the token autistic person” at Autism Speaks, has resigned from his position. In a post entitled “I resign my positions at Autism Speaks”, Robison writes: “Those of you who follow my writing know I am a strong believer in science, and the promise of new tools to remediate the ways autism disables us. However, there is a vast gulf between the tone of Mrs. Wright’s words and my own. I believe we see the situation rather differently. As an autistic person this is a time when I must give primacy to my own life experience and feelings.” You can read Robison’s full statement here.

How do you feel about the resignation of Mr. Robison? Why is Autism Speaks welcoming the Judge Rotenberg Center as an exhibitor, to be introduced as a resource for families and autistic people? Does Ms. Wright approve of the treatments used at the JRC? How do supporters of Autism Speaks feel about the treatments used at the JRC?  We will be speaking more in depth about all of this on this week’s ICAA Radio program.
Episode 2 of our special series on bullying will be aired next week.

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