Autism Speaks is widely distrusted and disliked by Autistic people. Many allists view the corporation as an essential resource for autism-related education and advocacy, although that is starting to change. In fact, Autism Speaks is no longer operating in Canada. However, for a long time, Autism Speaks stepped in to offer information and support to parents who’d just received their child’s autism diagnosis when the doctors failed to tell them what came next.
This will appear as a tangent, but thinking back on the November 27, 2015 attack on a Colorado Planned Parenthood, my mind draws some strange comparisons and correlations. We see where the vilification of Planned Parenthood has brought us, with it being largely defunded after Roe vs Wade was overturned. Before the overturning of Roe vs. Wade, only 5% of Planned Parenthood’s budget when to abortion services. This was used as a justification for removing the other 95% of the funding, which went to services such as birth control, STD prevention, and public health. Disagreeing with how 5% of the budget was used, even though the way it was used was legal, made Planned Parenthood a fair target for defunding in many people’s minds, and made it a target for violence in a smaller but devastating group of people’s minds.
Why doesn’t the same logic make Autism Speaks a fair target for defunding? 44% of the corporation’s overall funds are directed toward the prevention of autism. Most of this money is used to develop prenatal tests for autism. The development of such tests will likely result in the abortion of affected fetuses. Sine there is a group of people who think Planned Parenthood is fair game for violence because 5% of their budget is spent on abortion, why is Autism Speaks not targetted because of the same logic? If there is a portion of the American population who think it is acceptable for women to die for the sake of a pregnancy that is not viable or already lost, how can they be so casual about Eugenics?
Autism Speaks is portrayed as an organisation that represents Autistics. This is a misrepresentation. It is one of the only advocacy organisations that not had it’s leadership positions filled by the people it represents through most of it’s time in operation. Autistics have been used almost exclusively as the face of fundraising, as living representations of the looming threat of autism. Near the end of 2015, Autism Speaks made some changes in their leadership. Stephen Shore and Valerie Paradiz were added to the Board of Directors. The Wrights, President Liz Feld, and Chief Science Officer Rob Ring all stepped down. What changes in the culture of Autism Speaks did this produce? In October of 2016, the board of directors updated its mission statement to remove words such as struggle, hardship, and crisis.
Their old mission statement said:
“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society; and we work to bring hope to all who deal with the hardships of this disorder.” Autism Speaks No Longer Seeking Cure – Disability Scoop
Don’t get too excited. Here’s the rest of that 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…. Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.” Autism Speaks No Longer Seeking Cure – Disability Scoop
My first reaction was to wonder how much of this support is spent on funding community living programs and employment initiatives. Considering that a byproduct of Autism Speaks’ operation is the silencing of Autistic adults, I guessed very little of the funds were spent on making their lives easier. In fact, only 5% of their budget went into such programs.
My next thought was to wonder what percentage of their new budget was devoted to research into causes and interventions, and how their new statement about not chasing a cure would impact the kind of science being done. In the past, 5% of their funding went towards community programs that helped Autistics. 95% of their budget was poured into a combination of salaries, media portrayals that demonised autism in order to raise funds, and science programs that targeted its elimination.
If we set aside the issue of abortion, there is the issue of the USA healthcare system to consider. Trump’s administration has targeted the Affordable Care Act and many other programs people from the USA depend upon. Many Autistic people depend upon health care for interventions and support. Autistic people will lose their protection for preexisting conditions if the ACA is scrapped without a replacement being provided. It seems unlikely that Autism Speaks will step up to fill that gap. The idea they will go from allocating 5% of their budget to community services to devoting 95% of the money to real-world assistance of autistic people is absurd.
Please, read the petition in the link concerning reforms to the Canadian Disability Pension Plan. Please sign it and share. Thank you.
Limbic Noodle 
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