Only board member of Autism Speaks with autism leaves group

[karadinart]

“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.”
—
John Elder Robison, "I resign my roles at Autism Speaks"

Robison was the only openly autistic person among 37 people on the Autism Speaks Scientific Advisory Board and the only openly autistic person among 19 people on the Autism Speaks Treatment Advisory Board. Zero members of the AS Board of Directors, most senior executive staff, or Government Relations Team are openly autistic.

And now, after three years, Robison has resigned as well.

(via disabilityhistory)

Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.

Comments

[amarissia.livejournal.com]

I'm so glad JER made this decision. I loathe Autism Speaks, as I would anyone who treats me like a plague and a burden.

[kinkthatwinked.livejournal.com]

"Constantly challenged by a large percentage of the people affected by the condition they target," huh? Okay. I hadn't checked out or donated to Autism Speaks, and now I never will. I'll certainly know better than to reference them when I need help for my son.

[koshien.livejournal.com]

Yeah but people with autism have no idea what they want, they need to be told what they want and need by people who "know better" and what is best for them. Can these autistic people not understand that they simply do not need to choose, just sit there, do their damn therapy, be chelated and wait for the cure which will stop ruining their parents and families lives which they have devastated by being born with their terrible affliction?

Seriously Karadin, Fuck this noise with Autism Speaks - I try my hardest to stop people from supporting or believing their nonsense. Celebrities seem to really be on board with them which seriously annoys me cos ya know - Celebrities endorsements = good cause.

[karadin.livejournal.com]

People don't research charities, they just see oh austim, yeah, lets stop that childhood disease before it kills someone.