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.
The essay continues:
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.