Autism Speaks is widely distrusted and disliked by actually autistic people. To most of the rest of the world, they are the acknowledged source to go to for information about autism. When parents get an autism diagnosis, it is material produced by Autism Speaks that gets handed to them during this vulnerable time period. While they are trying to wrap their mind around a diagnosis report entirely focused on deficits, full of defeatist language, it is Autism Speaks that slides in with their fear mongering to scare the crap out of them.
On November 27, 2015, a Planned Parenthood clinic was attacked in Colorado. Strangely, many Americans weren’t upset. You might wonder why I am bringing up this topic when I was just talking about Autism Speaks. There are correlations in my mind. I need your patience while I make them clear to you.
People vilify Planned Parenthood, to the point of depriving funding for this vital community service, because of one aspect of the services they provide. 5% of their funding goes towards abortions. The rest of their budget is allocated to birth control, STD prevention, and public health. For a segment of American society, the 5% of Planned Parenthood budget that goes towards 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?
Autism Speaks is portrayed as an organization that represents people on the Autism Spectrum. This is a misrepresentation. Historically, there have not been any people on the Autism Spectrum in leadership roles. Autistic people have been used almost exclusively as the face of fundraising; the shadow of a looming threat.
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 their 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.
If a segment of American society think having even 5% of a budget devoted to abortion makes the organization a fair target for attack, why do they love Autism Speaks so much?
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
I wonder how much of this support shows up in the form of funding community living programs and employment initiatives. Color me skeptical of the organization that has done it’s best to give the impression adults with autism don’t exist. In the past, only 5% of their budget went into such programs.
I wonder how much of their budget goes towards research into causes and interventions, which are somehow supposed to be different than chasing a cure. 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.
Planned Parenthood is targeted for defunding, as well as attacks by extremists because 5% of their budget is spent on something a segment of the population morally disagrees with. This same segment throws financial and personal support at Autism Speaks, including President Trump and Vice President Pence, when the result of finding a way to diagnose autism in the womb will lead to the same exact place. Children with autism will be aborted.
The hypocrisy is aggravating. The fact these men appear to despise autistic people more than they openly hate abortion is terrifying.
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’s removed without something reasonable in its place. Many autistic people depend upon health care for interventions and support. When the ACA is scrapped, they will lose their protection for this preexisting condition.
Do you think Autism Speaks will shift their priorities to help these people when that happens? Doubtful.
What do you think will happen if the science programs of Autism Speaks come up with this mystical solution for autism they so fervently seek?
Let me lay it out for you: They will be told they have to take part in this solution. They will be told autism interventions and support will no longer be funded. If a person decided not to participate, they’d be on their own.
Do you honestly think the current administration would make such a thing optional, at least when it comes to continued access to financial assistance?
Many autistic people would still refuse.
“Why would they do such a thing?” A whole bunch of readers simultaneously gasped as they got to this section.
Many autistic people don’t consider autism a condition or disease. They consider it part of their identity. They don’t want a cure, and they aren’t just saying that because there currently isn’t one.
These people will be stuck with the choice of warping a fundamental part of who they are by accepting a treatment thrust upon them or living without supports that make their day to day lives easier.