A major autism advocacy org just gave up on finding a cure. That's great news.
There's a notable absence in Autism Speaks' new official mission statement.
The country's largest nonprofit for autism advocacy removed any language that made autism sound like an illness or disease.
Gone is the reference to autism as an "urgent global health crisis," and funding research toward a cure is no longer a priority. In fact, there's not even any mention of "hardship" or "struggle" anymore.
Now, their first objective is "promoting solutions." Their updated mission statement — which went into effect in late September 2016 and was the first change since the organization was founded in 2005 — focuses instead on things like "support" and "understanding" and "acceptance."
Photo by Mircea Restea/AFP/Getty Images.
It might sound strange that a massive nonprofit organization committed to autism spectrum disorder is no longer searching for a cure.
But the truth is that people with autism often live happy, healthy lives. This doesn't mean life isn't frustrating for people on the spectrum or for families and friends of people with autism, of course. But for those 1 in 68 people who fall on the spectrum of autism disorder just because their brains work differently doesn't mean they don't work.
In fact, some companies actively seek applicants with autism in hopes of harnessing the cognitive qualities that make them unique. This demonstrates a larger shift toward viewing autism as a set of functional behaviors rather than a problem or disorder that needs to be "solved."
(This is also why some people with autism prefer to be called "autistic people," too, as a way to embrace something they consider to be an central part of them.)
"Autism is here to stay and may be considered a part of the diversity of the human gene pool," said Dr. Stephen Shore in an interview with Huffington Post.
Shore is the one of the first people with autism to join the board of directors at Autism Speaks along with Dr. Valerie Paradiz, who was appointed at the same time.
The organization's founders were actually the grandparents of a man with autism. And however well-intentioned they may have been, they've faced a lot of criticism and controversy over the years due in part to the fact that they were making decisions about how to spend their $60 million dollar budget without any real buy-in from the people they were purporting to help. (They also promoted the oft-debunked vaccine connection until as recently as 2009.)
"After ten years of telling us 'it’s time to listen,' Autism Speaks now visibly listening to people on the autism spectrum is a very good sign," Shore said in an interview with The Art of Autism.
Dr. Stephen Shore. Photo by Cindy Ord/Getty Images for Autism Speaks.
This shift toward more support-oriented language is just one small step in a major organizational transition.
There are certainly some skeptics when it comes to the changes Autism Speaks is making, too. And to be fair, the executive director of Autism Speaks, Megan Hoffman, was still talking about a "cure" as recently as October 7, 2016. So even though the official language has shifted in a better direction, it'll still take some work to change the organization's internal culture to go along with this new mission.
But if Autism Speaks can find a way use their vast funding and connections in a way that actually works, it could make a huge difference for people with autism and their families across the country.
Because neurodiversity means more minds put together — and even better things can come from that.
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