Autism Speaks is an anti-autism hate group by definition.
In this essay I will ...
I originally posted this over on Twitter and the above has the common form of a joke-Tweet where it's implied a super-long thread is coming but nothing follows it. I thought it was a nice reversal to actually have the somewhat long thread come after the traditional set-up. This is going to be a rough one.
"The Southern Poverty Law Center (SPLC) defines a hate group as an organization or collection of individuals that – based on its official statements or principles, the statements of its leaders, or its activities – has beliefs or practices that attack or malign an entire class of people, typically for their immutable characteristics."
The above is from SPLC's website (SPLCenter.org). They continue, "An organization does not need to have engaged in criminal conduct or have followed their speech with actual unlawful action to be labeled a hate group."
I do not believe even most members or officers of Autism Speaks would deny that they are anti-autism. They have grown more savvy in recent years and have started cloaking their propaganda in the vernacular of the Neurodiversity Movement, but even when they speak one way, their actions and influence shows the truth.
SPLC does not currently track disability hate groups, even though they are aware of them. This article from their site includes explicit description of some of the hate and violence faced by disabled people. (Caution: the violence is very violent): "The Invisible Hate Crime"
Well, the aim of this article you are reading here is to make at least some of the harm that Autism Speaks does to autistic people a little more visible.
Is Autism Speaks the most abhorrent anti-autism or anti-disability hate group? I would be surprised if that were the case. There are many folks out there who do not cloak themselves in the protection of a non-profit and who do not pretend to help.
Yet, I do not believe it is a stretch to say that Autism Speaks currently holds the most power and influence over the American conversation around autism. By having some official recognition of Autism Speaks as a hate group, it would at the minimum allow some folks outside the autistic and greater autism communities to be aware of the harm they spread. It would be a small step towards others not automatically taking them at their word of being "experts" who know what's best for us.
Also, please note that SPLC already tracks many non-profit hate groups cloaked as charities, so them being a "charity" is not an issue.
Let's give some major highlights of their hateful rhetoric and actions similar to how SPLC would for a hate group's profile page on their site.
- Autism Speaks frames and views autism as a disease to be cleansed from the human race.
- Autism Speaks recommends autistic conversion therapy torture be started as early as possible for autistic children, recommending ages as young as 12 months old. The specific torture practices they share regularly are recommended for over 25 hours per week.
- Through their government lobbying, they have gotten autistic conversion torture to be covered by state insurances in all 50 states of America. Through their lobbying, they have shut down legislation with the only complaint they had was that there was not torture included.
- They have a track record of releasing anti-autism propaganda campaigns that frame autistic children as burdens who are coming to tear apart your family.
- Their propaganda is sympathetic towards filicide-ideation and creates a hostile environment for autistic people.
- Their propaganda contributes to major stigma about autism and autistic persons, contributing to the increased violence done to autistic persons as well as contributing to our increased suicide rates.
- They perpetuated anti-vax conspiracy theories about autism long after it was clear that vaccines do not cause autism. They did not recommend children get vaccinated until after the measles outbreaks in 2015, and continued to support anti-vax theories and research until at least 2017.
- They direct parents of newly-identified autistic children to seek out other parents who have tried older "cures" for autism that have "worked" for their children in spite of knowing the harm these practices have done. They tell parents to only trust established websites like those ending in .edu and .org. Their website ends in .org and they have branches of "Autism Speaks U" at universities across America, again framing themselves as the "experts" to be listened to. Anyone can buy a .org website.
- They encourage all parents to get genetic testing of their already-diagnosed children and submit genetic information to ongoing studies. They have stated goals of getting earlier and earlier identification of autistic children. If the children are already born, this is so the torture can start as soon as possible.
Let's talk about the torture first I suppose.
The biggest "success" that Autism Speaks has wrought on the American autistic community and, to a lesser extent, worldwide, is increasing the use and coverage of autistic conversion torture. For autistic children, all conversion torture is included under the umbrella of what they call Applied Behavioral Analysis or ABA.
From their website:
Since 2007, Autism Speaks has focused on improving health insurance coverage for medically necessary treatments such as applied behavior analysis (ABA). As of August 2019, all 50 states require meaningful coverage for autism therapies, including ABA...
Anytime Autism Speaks talks about "evidence-based treatment", that's their dog-whistle for ABA. No matter that the "evidence" they speak about seems to mostly come from Ole Ivar Løvaas who also was one of the individuals responsible for giving "evidence" that gay conversion therapy torture "works".
In their own publications, they apparently are aware of the toxicity of Løvaas, and so they go a step backwards to referencing B.F. Skinner, the 1930s creator of behaviorism. The person who believed free will was an illusion and used his torture techniques to "teach" mice and pigeons.
Important to note here that behaviorism in general and ABA specifically is focused entirely on external presentation. For ABA (and gay conversion torture), the stated goal is to have a child who is "indistinguishable from their peers". Their premise that the torture works should not be accepted as we have a lot of evidence that it does not, but even how they measure the torture working should also not be accepted. Exactly like with gay conversion torture, it's about getting a child to pretend to be something they're not so you will stop torturing them.
Autism Speaks was a major spreader of the anti-vax conspiracy theory that the MMR (measles, mumps, and rubella) vaccines cause autism. Autism Speaks was founded in 2005 and the study was completely withdrawn by 2010, but the multi-million dollar research machine that is Autism Speaks continued to funnel money into studies testing something that was already proven wrong.
As many autistic self-advocates will note, even if that was true, they were still saying they would rather have a child catch measles and risk dying than they would have an autistic child. From everything we know about autism, it's genetic.
When measles outbreaks became much more significant in America in 2015, they finally released a statement saying that children should be vaccinated. That's it. They appear to have completely divorced themselves from anti-vax stuff by 2017.
I say "appear", because in all of their current publications, they still refer to "environmental causes of autism" even though we know it is genetic. It is true that trauma and other problems can influence presentation of autistic features, but no matter how I am presenting on any particular day, I am still autistic. It is also true that autistic people are more likely to be victims of sexual assault and other traumatizing experiences than neurotypical people are.
Here, it should be mentioned that a key component of conversion torture is to teach the children compliancy and obedience to authority figures and to ignore pain and their own feelings.
Of course, if Autism Speaks did not believe that "environmental factors" could "cause" autism, then they would have much less internal logic to believe that torture could "cure" autism.
The ABA lobbying they have done is probably the most direct harm they have brought to our community and they are proud of their influence. Recently, they ended legislation in Virginia intended to bring additional training to teachers with just a few sentences spoken over a video call. Presumably, the only problem they had with the training was that did not specify it was going to be training in torture.
I am still furious when I remember the legislator responding to the Autism Speaks lobbyists saying that the legislation was dead until they could discuss further with "experts".
This banner on the website of Autism Speaks jumped out at me as being representative of how much reach they have as an organization:
Let's turn to some of the propaganda they release that ironically makes the "everyday" lives of autistic persons worse. In their 2006 film, "Autism Every Day", Autism Speaks presents autism as a nightmare that tears apart families. They presented the worst possible face of the mothers they included and of their children as part of their scare tactics. The mothers were instructed to not wear make-up and to not have any assistance for their children the day of the shooting to make sure they presented the face of autism that they wanted to show.
Their then Vice President Alison Singer appeared as one of the mothers. In my viewing of the 13-minute version of the film, I did not see any reference that she held that position or was associated with the organization. There is a longer cut of the film that was screened at Sundance. The 13-minute version is freely found on YouTube. It's hard to watch. The focus is on the burden we are and scaremongering to raise funds. Here's one copy if you feel up to subjecting yourself to it (I have to skip around because of the sound-levels, it's also all hateful rhetoric):
Alison Singer discussed how she considered driving off the George Washington Bridge to end her and her child's life in a murder-suicide. She says this with her child in the room with her. She goes on to say that the only reason she did not do it was that she had a non-autistic child as well.
Singer has since apologized for describing her thoughts of the time in a way that could be misconstrued as her not loving her daughter and claims that her wanting to kill her daughter and die with her was out of love in order to prevent her daughter's suffering.
The apology misses the point entirely and further perpetuates an environment of being sympathetic to filicide and a belief that our deaths are better than our lives.
You can read her apology on her blog on Autism Science Foundation's website. She split with Autism Speaks over being anti-vax, is on-board with improving the lives of living autistic persons, but is still dedicated to genetic research in order to find a "cure" for autism, so she founded ASF.
Even if genetic research could help us, scientists and the organizations dedicated to mining our DNA have done nothing to prove themselves trustworthy with the information. The goal of so much of the genetic research is to end our neurotype, not to help living autistic persons, but to prevent autistic persons from ever being born.
Autism Speaks "autism awareness" and "Light It Up Blue" campaigns are not about spreading awareness of autistic persons and our lives, but about spreading fear of your children being autistic. It's about scaring up fundraising.
They consistently present an incredibly biased viewpoint of our lives and the "burden" we place on families and societies. I refer to their propaganda as spreading awareness of an "autistic bogeyman". Although, they are still firmly dedicated to not listening to disabled people and autistic people about how we want to be called, so I should probably start saying "bogeyman with autism".
They simultaneously discuss the problem of "overdiagnosis" of autism and frame the rising numbers as an "epidemic". They dismiss autistic individuals capable of communicating with others as not really autistic while using statistics that freely borrow from whatever subgroup of autism they want if it will make us look bad.
They claim up to one-third of us are epileptic and 50% of us wander. They then throw in that drowning is the number one cause of death of those of us who wander. If police are going to be part of society, I would urge them to question some of those drowning deaths as accidental or not. I am not implying that every death was murder, but I am saying that an organization who releases propaganda about how much our parents want to kill us is also giving parents a road map to do so.
A few days after "Autism Every Day" aired, this played out with a person who felt free to suffocate their autistic child in a garbage bag. That person did not have a lack of support to help them, they had two full-time aides. It's unclear if "Autism Every Day" factored into this person's decision to murder their child, but it is indicative of the conversation which Autism Speaks furthers.
A few weeks after that death, in the same community, another parent tried to kill their child, this time a child with cerebral palsy. Note: the media had responded to the initial child-murder rather sympathetically.
It is horrible when a child dies, but when an autistic or disabled child dies, the media talks about the burden we put on our families and communities. Even when we are murdered, the murderers are portrayed more sympathetically than the victims. After a lifetime of stigma and not having our needs met, suicide is also a result that can occur.
In 1993, a child with cerebral palsy was gassed by her father and killed. The media was overwhelmingly sympathetic there as well. A 1999 poll claimed that 73% of Canadians believed it was out of compassion and 41% believed that "mercy killing" should be legal.
If you were unaware, between two and three hundred thousand disabled persons were "mercy killed" in Nazi Germany between 1939 and 1945. In fact, they tested out processes they would use on Roma, queer, and Jewish peoples. This is also the origin of Asperger's Syndrome, where Hans Asperger decided which autistic kids could be productive to the nazis and which of us were "life unworthy of life".
I bring these murders up because any society that believes "mercy killing" through gassing children is justified is one I am opposed to. Also, because in the years after the 1993 case with the overwhelming media sympathy, there was a 30 percent increase in filicide cases.
SPLC was part of a white paper about funding towards hate groups disguised as non-profits and this quote from it jumped out at me (it was also a cutout quote in the paper, so I acknowledge the good design):
Here's another of Autism Speaks hate propaganda from 2009, the "I Am Autism" campaign, directed by Academy Award-winning director Alfonso Cuaron:
If you watch that video—which, I am by no means suggesting you do, as it is horrific—I'd like you to imagine seeing that puzzle piece symbol which bookends it on a flyer for a conference that is supposed to be "autism friendly".
Autism Speaks had already proven their contempt of us and how much they did not think of us as people, but that campaign really made many autistic persons recognize them as a hate group and the puzzle piece as a hate symbol.
Some autistic persons have some connection to the puzzle piece, and it has been a symbol placed on autistic people since the beginning of organizations for parents of autistic people. Originally, they viewed autism as a "puzzling condition". Still, for many of us, myself included, the puzzle piece has become toxic and triggering. The association with Autism Speaks and its liberal use on everything created by non-autistic persons to identify something as being relating to autism has pushed that line.
Autism Speaks has and continues to do incalculable harm. Their dominance over the conversation around autism and now controlling millions of dollars of research and government legislation are all things that contribute to filicide and suicide of autistic people.
Turning to Autism Speaks as the "experts" on autism is like turning to NARTH (National Association for Research & Therapy of Homosexuality) as the "experts" on queer people.
Is that too much of a stretch? Well, George Rekers who worked and co-authored the paper with Løvaas on gay conversion torture kept working on gay conversion torture and was an officer and scientific advisor of NARTH. The reason Løvaas left and focused on torturing autistic kids was because homosexuality was removed from the DSM and it became more difficult to find funding.
SPLC has done a ton of good on working against conversion torture of queer people, I'm just asking they extend that to the conversion torture of autistic people. It would be nice if Southern Poverty Law Center started tracking disability hate groups and it would be even nicer if they put Autism Speaks on it. If just a few more people could avoid their hateful rhetoric and a few more kids could be a little bit safer, it would be worth it.
Thank you for reading. Please share, follow, all the usual.
I'm still recovering from all the research I had to read and watch for this thread, and part of trying to be an advocate as a job is including my ko-fi, so it seems wild to me that I wouldn't attach it for something that took so much of my time and energy and resilience. If you decide to buy me a coffee, then I appreciate your support! Thank you! ko-fi.com/zeroar
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