Autism Speaks is widely distrusted and disliked by actually autistic people. The majority of neurotypical people view the corporation as an important resource for autism-related education and advocacy. For many parents, the devastatingly deficit-based diagnosis report they are given for their child is followed up with educational material produced by Autism Speaks. It is upsetting to imagine Autism Speaks propaganda shaping parental minds during this vulnerable time period.
It was disturbing to observe how many Americans were not upset about the November 27, 2015 attack on a Colorado Planned Parenthood clinic. Bringing up this attack might seem out of place in a discussion about Autism Speaks. Bear with me while I illustrate the correlations in my mind. Planned Parenthood has been vilified to the point of justifying the stripping of vital funding for this crucial community service. The way 5% of the allocated funds are used has become the pretext for removing the other 95% which is used for things that include: Birth control, STD prevention, and public health. It is alarming to know that for a segment of Americans, the five-percent of the Planned Parenthood budget that is used for abortions makes them a “fair target” for attacks.
So here’s my question: Why doesn’t the same logic make Autism Speaks a fair target? In 2008 the chief science officer of Autism Speaks received $669,751 in total compensation. 44% of the corporation’s overall funds are directed toward the prevention of autism. To be clear, most of this money is being used to develop prenatal tests for autism. The development of such tests will likely result in the abortion of affected fetuses. If there is a segment of the American population who think it is alright to attack Planned Parenthood clinics because 5% of their budget goes toward abortions, why is Autism Speaks considered benign?
Autism Speaks is portrayed as an organization that represents people on the Autism Spectrum. This is a misrepresentation. It is one of the only advocacy organizations that does not have the people it claims to represent filling leadership roles in the organization. Autistic people 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.
Now it’s 2017. What changes in the culture of Autism Speaks have been produced by these changes in leadership? 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
What methods and priorities fell under this umbrella? For starters, a HUGE percentage of their funding went into finding a method for diagnosing autism in the womb. This was once the priority of Down Syndrome researchers. Once the methods were mastered, a wave of abortions followed.
Don’t get too excited that the new mission statement demonstrates a complete change in culture within Autism Speaks. Here it is:
“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 to this was to wonder how much of this support shows up in the form of funding community living programs and employment initiatives. Considering the organization works hard to silence autistic adults, I guessed very little of the funds were spent 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 actually autistic people. 95% of their budget was poured into a combination of salaries, media portrayals that demonized 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 American healthcare to consider. The new administration has targeted the Affordable Care Act for elimination. Many American lives depend on this act, and these people will die if it is removed without an accessible alternative being put in its place. Many autistic people depend upon health care for interventions and support. Autistics 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 for autistic people. 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.
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