Why I’m Still Boycotting Autism Speaks

i-dont-need-a-cure

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 defunding 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 disagree with. This same segment throw 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 have 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.

 

 

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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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