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.
Another significant event took place. Suzanne Wright contracted pancreatic cancer. This was so difficult for their family, that the Wright's resigned from the autism speaks board and others took over. This made Steve Shore believe that autism speaks was now a safe haven and after some years of unsuccessfully trying to recruit him for their board of directors, he finally decided to get on board and become a team player. Valerie Paradiz who has stated that she has Asperger's was the second autistic board member to be appointed by Autism Speaks. Valerie has not only been an opponent for a cure for autism, she stated at least according to one media source that autism is not a disability but a strength.
But now autism speaks has reached a new low in no longer stating that they want to cure autism.
I don't know exactly what this means and whether or not they will continue to fund genetic research and neuroscientific research as they did in the past. They say "better interventions", but I don't know if this means more ABA type things or if it is something like medications, or various types of neuromodulations such as Manuel Casanova's TMS or something like Yuri Danilov's experiments with stimulating the brain.
I realize that a cure will not likely be found in my lifetime. There is the argument that just because they don't use the word cure does not mean that they won't fund interventions that might help people. and that they won't fund the same scientific research before that could lead to an improvement in the quality of the lives of autistics or even a cure. They don't have to talk about a cure because it is not something that will happen, at least in the short term.
However, this is a victory for neurodiversity who are in a much better position to speak for themselves than those of us on the more severe end of the spectrum who cannot get married or be college professors unlike Steve Shore and Valerie Paradiz.
Roger Kulp is an individual with more severe autism than these people. He's very knowledgeable about the science of autism and the few forms of autism such as cerebral folate deficiency that are actually amenable to treatment. He's expressed a desire to be on the board of directors, but Autism Speaks does not want him on their board.
Regardless of whether or not a cure is or isn't realistic, that should still be the ultimate goal of any decent autism organization. They should state that at some point of time they want to end this tragedy and not have to exist anymore.
It's a shame that autism speaks has gone in this direction and was influenced by a few people whose autism spectrum is so mild that it does not matter to them if many of us who do want a cure for ourselves or family members who are suffering.
If anyone reads this post who gives money to autism speaks or has participated in their walks, etc., I urge you to boycott them until they make a public statement stating that they want a cure and put their goal of finding a cure in their mission statement.
Of course there is still the Simons Foundation, funded by multibillionaire James Simons. They don't have to worry about marketing and promotion to get funding in contrast to Autism speaks. They fund a lot of the genetic research that neurodiversity detests so much and are likely more immune to political considerations than autism speaks. If autism speaks funded research can't or won't find a cure, then I hope the Simons foundation's will.
Addendum: I've just been alerted to the fact by one of my commenters that autism speaks has also omitted the word "prevention" from their mission statement also. It's possible that this could mean that if for example CRISPR techniques advance to the point where genetic editing could be done so that a person won't develop autism, AS is against that too. They've bought the phony baloney neurodiversity argument that prevention is a code word for abortion.