I’m a member of the Facebook group Boycott Autism Speaks.
Yesterday, I learnt from the group that Suzanne Wright, one of Autism Speaks’ cofounders, died on Friday of pancreatic cancer.
As you’ve probably guessed by the fact that I’m a member of Boycott Autism Speaks, I dislike the organisation. I have real problems with its thrust, and methods of advocacy. Suzanne Wright and her husband Bob founded Autism Speaks in 2005 after their grandson Christian was diagnosed autistic.
Autism Speaks bought into the “vaccines cause autism” lie (initially understandable), and continued to support it long after it became no longer tenable. In 2009, Alison Tepper Singer was Vice President for PR and Strategy at Autism Speaks. When the first three verdicts in the Omnibus Autism Proceedings went against the families, Singer took a very close look at the evidence, and realised that vaccines did not cause autism. But when she approached the Wrights and tried to get them to abandon the idea, they refused. Singer left Autism Speaks and set up the Autism Science Foundation.
In 2014, Rob Ring, the then Chief Science officer of Autism Speaks, issued a statement refuting vaccine autism causation. Bob Wright responded with a stilted and ambiguous comment. Then in 2015, Ring’s refutation was expunged altogether from the Autism Speaks website. This was more than five years after Wakefield had been exposed as a liar who cooked his data.
Autism Speaks also constantly pushed the “Autism is a tragedy” narrative. In 2009, it produced a video titled “Autism every day”. “Autism every day” depicted autistics and their families as living a hellish life, thanks to the condition. There was a great deal of anger from autistic self advocates over the video. Unfortunately, Autism Speaks turned a deaf ear to those concerns.
Near the end of 2013, Autism Speaks put out a “call to action” that once again demonised autism and those on the spectrum. The response was immediate and furious. John Elder Robison, the only autistic board member of Autism Speaks, resigned. A flash blog was set up by autistics to counteract the propaganda. Autism Speaks’ response was patronising, condescending, and insulting in the extreme.
Michael Rosen, executive vice president of strategic communications at Autism Speaks, said Robison was the only one who resigned over the post. He said the organization understands that higher-functioning people with autism may have a different point of view about the issue.
“The people who are not sick, not unhappy, and are totally fulfilled and happy with their differences, we totally support them as well,” Rosen said. “We’re not looking to change anybody, we’re looking to support and get services for everyone who needs them.
“What that column had was a lot of empathy for those who are struggling the most. But for those who just need support and services, we work for them as well.”
In other words, “you’re making a huge fuss about nothing”.
The real problem with Autism Speaks is that it consistently refused to listen. It refused to listen to the experts and it refused to listen to autistics. And that ultimately made it far less effective than it could have been. Ironic, considering that “It’s time to listen” was its tagline.