Why I’m Still Boycotting Autism Speaks

i-dont-need-a-cure

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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11 thoughts on “Why I’m Still Boycotting Autism Speaks

  1. Yes!! Thank you for writing this! 👏🏼👏🏼👏🏼. I still loathe A$. They still suck. I don’t care what anyone says lol 😉 I don’t care that they’re trying to come off all fuzzy and warm these days. All they did was remove a single word (the “C-word”; “cure”). But I’m not buying it. I don’t think they’ve changed their tune one bit. I still think they’re gunning to catalog our genes into their three massive worldwide databases and quietly try to spearhead gene therapy to prevent the births of people like us. It was so “funny” (ha) when they removed the word from their mission statement and everyone thought they deserved a medal. The headlines rang out “A$ no longer seeking a cure”. BS. They’re still looking for one; they’ve just smuggled their efforts underground. They simply (finally) clued into the PR nightmare that their intentions were generating and they scratched out a single word. Big deal; they’re still aiming for that goal: total elimination/prevention. I applaud your voice and your words! Keep going; don’t let it drop 😊👏🏼❤️❤️

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  2. Pingback: 70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post) – the silent wave

  3. Although I dislike Autism Speaks and agree in principle with the argument given here, I feel there’s something highly misleading about it. I do agree that it risks setting a nasty precedent, but that isn’t the same thing as a cause.

    Autism Speaks has not, as far as I know, ever advocated in favour of aborting autistic children, and once you realise that most right-wing/Republican types aren’t overly concerned with identity politics, deciding to abort people for specific reasons doesn’t necessarily represent hypocrisy.

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    • There are worse things than “misleading” for someone to call you. For example, I think it is misleading to say that right-wing/Republican types aren’t concerned with “identity politics”. Considering the unqualified people they are choosing for positions, they appear to be VERY concerned with “identity politics”–THEIR IDENTITY.

      Furthermore, intent isn’t all that matters. It’s doubtful the scientists who found a way to identify Down Syndrome in the womb meant for the followup actions to be a slew of abortions.

      Autism Speaks might not explicitly want their research to identify autism in the womb to result in mass abortions. You’d never figure that out from the way they portray autism in the media. They spend decades demonizing autism and scaring the shit out of parents. How would they expect any other result?

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  4. “Considering the unqualified people they are choosing for positions, they appear to be VERY concerned with “identity politics”–THEIR IDENTITY.”

    Agreed. But what I meant was that if you were a republican, it probably wouldn’t matter to you whether the fetus you did or didn’t want aborted belonged to a particular group of people or not (and given that we’re talking about fetuses and babies here, those groups are divided by things like social background, disability, appearance and sex, not things like “forming an identity as a Bush/Reagan/Trump supporter” vs a “Clinton/Sanders/Obama supporter”), because you would see it as an individual problem, not a widespread one where people aborted people of a particular group. A progressive left-wing person sees someone aborting a member of a particular identity group and thinks “this person is aborting a member of this identity group”. A right-wing person sees someone aborting a member of a particular identity group and thinks “this person is aborting an individual”.

    So, in this scenario, a pro-choice republican who decided to abort her baby wouldn’t see a huge distinction between aborting someone who was likely to be beyond the level of support she was able to offer because they were likely to become a broke fuckup that she didn’t intend to have, and supporting someone who they assumed would need the same level of unavailable support for a different reason, such as having a disability that made them unable to see or hear, unable to speak or with communication difficulties (autism) or unable to become fully independent (Down’s syndrome, serious illnesses) or academically minded (Down’s syndrome, other mental disabilities).

    Likewise, for the pro-lifers who were extreme enough to justify gunmen, whether the person was a member of a group isn’t important to them; as far as they are concerned, murder and infanticide are the same regardless of whether the baby in question happens to be autistic (or female, or male, or black or white or blind or deaf or abled) or not.

    “Furthermore, intent isn’t all that matters. It’s doubtful the scientists who found a way to identify Down Syndrome in the womb meant for the followup actions to be a slew of abortions.

    Autism Speaks might not explicitly want their research to identify autism in the womb to result in mass abortions. You’d never figure that out from the way they portray autism in the media. They spend decades demonizing autism and scaring the shit out of parents. ”

    True. But if that’s the case, the lack of intent still matter isasmuch as it needs to be made clear. Otherwise you might as well say that car owners are facists intending to run people over, or, if you feel that the demonizing demonstrates some intent, that some schoolyard bully is the same as the leader of a concentration camp because they both used slurs.

    “How would they expect any other result?”

    The same reason people who watch Oxfam videos of starving African children don’t think, “well, we better euthanise all those poor people since they’re beyond help”. The scary autism stuff is supposed to be there to encourage support or cures, not abortions and giving up. Unfortunately, as we are all aware, when it comes to the parents and carers of autistic people, it risks doing the latter. Supporters of Autism Speaks claimed that this video was supposed to be something that parents could identify with, but I suspect that much like the Oxfam ads, they were really just using shock tactics to encourage the average layperson who knew nothing about autism to give away their money.

    While I agree that autism doesn’t need a cure, I fail to see why deciding that an impairment needs curing is the same as arguing that someone is worthless unless they are born without any impairments. Curing impairments, injuries and illness is not the same as deciding such people are worthless and deserve to be killed, aborted or never reproduced.

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    • I hope you haven’t gleaned from my article that I want Autism Speaks to to a fair target for extremists. My point was that the same people who vilify PP for what 5% of their budget is spent on will gladly support Autism Speaks when an even larger % of their research will lead to the same place. I realize you disagree they actually have thought about chain of consequences. We don’t have that luxury. Besides the possibility a parent will abort a child based solely on a test in the womb that identifies autism, there are all the ways potential “cures” could be forced upon people who might not want to be subjected to these. I am not suggesting the search for treatments should be abandoned, but I am wary of that mindset and where it can lead.

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