WALLACE’S NOTE: Although the following story is about the ‘October Surprise’ from Autism Speaks, the decision in question may have some long term implications.
Autism speaks has published a new mission statement:
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
Saliently absent is the word “cure” from their mission statement which they had in the past:
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism…
Anti-cure Autism Speaks board member Stephen Shore announced this today on his FB page, linking to autism speaks’ website showing their new statement and is apparently pleased that he (and others with influence) got their way.
In the days before Autism Speaks, I was a supporter of Cure Autism Now and participated in some of their walks and donated money to them in the days when I was working and had a bit more extra money. In 2005, the National Alliance for Autism Research and Cure Autism Now merged to form Autism Speaks. In the early days of Autism Speaks, I signed paperwork donating my brain to their Autism tissue program, not knowing what their organization would eventually become.
In 2008, they donated a nearly half a million dollar grant to Laurent Mottron who not only believes that the notion of curing autism is nonsensical but also believes that autism is not a disorder or a deficit or that there is anything wrong with the brains of those on the autism spectrum, but that autism is merely a “difference” Some years ago I wrote a blog post inquiring why autism speaks would donate this kind of money to a man whose goals and statements were so diametrically opposed to their own and what they advertised to solicit donations on their walks and other places. Laurent Mottron also had autistic autism researcher Michelle Dawson on his team who stated that Autism Speaks was out to deliberately harm autistic people in a post in which she stated that AS ideally wished a short future for those on the spectrum and linked to a piece that Suzanne Wright had written stating that she wanted to eradicate autism.
For years, autism speaks had received criticism from various so-called autism advocates for not having any autistic people on their board of directors or in positions of power. Many individuals, including Steve Silberman many years later, made the hyperbolic comparison of the NAACP being run by whites and not allowing any black people to make managerial decisions in the organization.
Autism Speaks, not being immune to its many detractors, actively tried to recruit various high profile individuals at the very mildest end of the spectrum. This included Stephen Shore, a very high profile autistic and prolific conference presenter with a doctorate in special education who worked with various children on the spectrum. Steve Shore was opposed to a cure and the notion of autism being a disordered rather than different way of being, but this did not matter to AS. They tried to recruit him for either board of directors or some other position. He turned them down, believing their goals in autism were incompatible with his.
John Robison, who wrote a commercially successful memoir about having Asperger’s syndrome, was also approached and asked to serve on their scientific advisory board, along with parents and scientists who all had doctorate degrees, despite that the fact that he was a high school dropout with no knowledge of autism science.
Not long after John Robison started serving on the board, they funded the production of short autism related videos, called Autism Talk TV. The recipients were both Alex Plank and Robison’s own son, Jack “Cubby” Robison. Alex Plank runs the pro-neurodiversity website Wrong Planet. He’s not only stated that most autistics are opposed to a cure, but in the past stated that autism is a good thing.
After these events, I was appalled at Autism Speaks and regretted having donated my brain to them, though to this day I still haven’t bothered to revoke my donation. I no longer supported them in any way and would not donate money to them, even if I had more money to donate to a good autism charity.
After the Los Angeles Times published an op-ed piece by Steve Silberman that included the analogy between autism speaks and the NAACP that I wrote about above, Liz Feld, Autism Speaks CEO, responded urging the autism community to work together. This was years after not responding to repeated criticism by the neurodiversity movement, including that they were eugenicists whose only goal was to find a pre-natal test for autism and urge the abortion of autistic fetuses.
(See second instalment in five minutes).