Trigger warning/content: Ableism, quotes of ableist speech, violence, discussion of murder, eugenics, co-optation, internalized ableism, erasure, mention of heterosexism.
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Co-Opting the Movement:
Autism Speaks, John Elder Robison, and Complicity in Oppression
Lydia Brown
Earlier this year, the executive board of a student organization at Georgetown made the decision to support an autism awareness event featuring a speaker from the non-profit Autism Speaks in the name of supporting all organizations that "represent marginalized groups." This was incredibly disappointing but not surprising, given the organization's prominence on the national and international stage in autism advocacy. Perhaps more surprising was the announcement from the College of William and Mary this fall that their Neurodiversity Initiative will be bringing John Elder Robison to campus as a scholar-in-residence for the year. The
official press release referred to Mr. Robison as one of the "most well-known and influential neurodiversity advocates," and mentioned that he will be co-teaching a course on neurodiversity at the college. Furthermore, the press release mentioned only in passing Mr. Robison's work with Autism Speaks, which is of immediate and profound concern to me for several reasons.
Firstly, Autism Speaks is not an organization that represents marginalized people in any way whatsoever. Autism Speaks excludes autistic people from its leadership and has no meaningful representation of autistic people among its several advisory boards. To suggest that Autism Speaks actually represents autistic people in any meaningful way would be ludicrous. There is not now and has never been a single openly autistic person on the organization's board or in the administrative leadership. The presence of one autistic person on an external advisory board comprised of twenty-nine other members constitutes tokenism at best and brazen mockery at worst. No reasonable person would dare suggest that an organization comprised entirely of men represents women's interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.
Taken from Autism Speaks's own website, where the names and biographies of its board of directors and advisory board members have been posted, it is easy to learn the following:
- Autism Speaks's Board of Directors consists of thirty-four individuals, none of whom are openly autistic.
- Of the six senior-most executive staff, not one is openly autistic.
- In 2010, Autism Speaks appointed Mr. Robison, an openly autistic adult, to its Scientific and Treatment Advisory Boards. Both of these boards intend to bring both professional and personal perspectives to reviewing research grant applications; however, on the Scientific Advisory Board, Mr. Robison is one of thirty-seven members, and is the only openly autistic person. Similarly, on the Treatment Advisory Board, Mr. Robison is one of nineteen members, and is also the only openly autistic person.
- The eight members of the Autism Speaks Government Relations Team responsible for developing and implementing advocacy priorities are entirely non-autistic.
Furthermore, the widespread and vehement opposition of actually Autistic people to both the philosophy and goals of Autism Speaks is incredibly well-documented. One need look no further than the plethora of websites, blogs, and other social media platforms led by autistic voices to observe the overwhelming animosity toward Autism Speaks from within the autistic community. This organization chose to
threaten a lawsuit against a fourteen-year-old autistic girl for creating a parody of their website in order to silence her. This organization chose to
appropriate a prominent autistic activist's writing without her consent and trivialize her rather justified demand to cease use of her intellectual property. This organization deliberately chose to
erase a group of autistic activists from the story of their fight to eliminate ableist hate speech from Google’s automatic search suggestions. This organization certainly deserves no accolades as an organization somehow "representing marginalized groups."
Image description: A photograph of the head and shoulders of a young female-presenting Asian person with chin-length black hair and glasses, wearing a black polo-shirt, standing against a light wooden door with a dark overcoat hanging on a hook behind her as she gives a stoic expression to the camera. She is holding a yellow notepad that has a handwritten note reading, "I will not be complicit in my own oppression."
Secondly, Autism Speaks routinely relies on ableist rhetoric and fundraising tactics that promote fear-mongering and pity about autistic people rather than genuine understanding or acceptance. Comparisons of autism to deadly diseases, natural disasters, and car accidents do little to encourage support of Autistic people and everything to encourage fear and tragedy models of disability in direct contravention to the principles of anti-ableism, disability justice work, as well as the disability civil rights movement. In Autism Speaks’
Strategic Plan for Science 2013-2017, the authors use language that inaccurately refers to autism as a "disease," discusses autism’s "cost" and "burden to society," and speaks of autism as an "urgent public health crisis." This is language intentionally chosen to evoke fear.
Yet their rhetoric is not merely limited to fear-mongering, but also indisputably crosses into the territory of the unconscionable. Former Autism Speaks board member Harry Slatkin, whose wife, Laura, continues to serve on the Board of Directors, stated in
an interview with Town and Country while still a board member that sometimes he hoped their autistic son David would drown in the backyard pond rather than "suffer like this all his life." Evidencing a pattern of similarly violent rhetoric, Autism Speaks is also responsible for the 2006 PSA "
Autism Every Day" in which their then Vice President states on camera that she considered putting her autistic daughter in the car and driving off a bridge, and that the only reason she refrained from doing so was because her other, non-autistic daughter would have been waiting for her at home—her autistic daughter was in the room as she made these statements. Furthermore, the producer of this PSA explicitly admitted that the film was
intentionally staged to portray negative images of autistic people and their families.
Only four days following the release of "Autism Every Day," pathologist Karen McCarron smothered her autistic daughter with a garbage bag. McCarron stated that she murdered Katie because her "autism had not been improving," had thought about killing Katie, that made an earlier brief attempt at suffocation, wanted to cure Katie, thought killing Katie would make her "complete" in heaven, and wanted to live without autism and thus had to kill Katie. Investigators found that McCarron was obsessed with different treatments for Katie. (See
People v. FRANK-McCARRON, 934 NE 2d 76 - Ill:
Appellate Court, 3rd Dist. 2010.) Though it is not presently possible to draw a direct connection between Autism Speaks' PSA and Katie's murder, this crime and dozens like it only underscore how the kind of rhetoric that Autism Speaks favors only serves to
recklessly endangers the lives of autistic people.
Yet, "Autism Every Day" was not a fluke incident, as Autism Speaks is also responsible for the 2009 PSA "
I Am Autism," in which a voiceover claiming to be autism threatens to destroy marriages, bankrupt families, and prevent children from ever forming meaningful connections. (I have included the full text below this article.) These assertions that autism is a horrific tragedy or a are patently false, as evidenced by the actual lives of autistic people and their families. Furthermore, Autism Speaks released another PSA in 2009, "
Neighbors," that strongly implies that autistic children cannot have friends unless they are subjected to compliance-based behavioral interventions to suppress naturally autistic movements—essentially, the message is that autistic people cannot be accepted while visibly autistic. Most recently, they released a PSA in 2013, "
I Want to Say," that ostensibly gives space for non-speaking autistic people who use augmentative and alternative communication, but which received
scathing criticism by a prominent non-speaking autistic activist for its utter failure to center the voices of autistic people at all.
Thirdly, in direct contradiction to the foundational philosophy of the neurodiversity movement, Autism Speaks is committed to the ultimate elimination of autistic people through preventing or potentially curing autism. Their
mission statement explicitly states, "We are dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism." Suzanne Wright, one of the co-founders of Autism Speaks,
has stated that the organization’s goal is to "eradicate autism for the sake of future generations." It is astounding to me that autistic people are disproportionately targeted for abuse in homes and schools, rape, and other violent crimes, yet Autism Speaks does nothing to combat these appalling crimes but instead chooses to funnel the vast majority of their research dollars and political clout into cure-oriented research in the hopes of eliminating autism. These problems are not caused because of autism but because of ableism. Organizations that promote ex-gay conversion therapy that supposedly turns gays into heterosexuals are roundly criticized and would certainly never be presented as representing marginalized people. The solution to institutionalized violence and oppression against the Queer community is not to enforce heteronormativity and gender essentialism, but rather, to challenge and deconstruct heterosexism, cissexism, and binarism. Likewise, the solution to the problems that afflict autistic people is to deconstruct ableist hegemony while promoting research and policies to improve access to and quality of support services, eliminate legal barriers to equal access and opportunity, and challenge attitudinal barriers to full participation and inclusion in society. These are not goals that Autism Speaks supports or funds.
Finally, I resoundingly reject the notion that either Mr. Robison's appointment through the Neurodiversity Initiative or the complicity of supposedly progressive organizations in supporting Autism Speaks' activities should somehow be exempt from criticism under the premise that all organizations and individuals should be given a platform to express their views and that constructive dialogue from all perspectives ought to be encouraged. It would be unequivocally clear that organizations like white-supremacist, neo-Nazi, or anti-Semitic groups do not deserve a platform or a space in public discourse, especially in spaces that exist ostensibly to benefit and empower marginalized people. An individual autistic person with close ties to organization that promotes an appalling vision of a marginalized group that is certainly not in alignment with even the most basic aspects of the neurodiversity movement has not only lent his voice to that organization but has been named as the public face and leader of a program supposedly committed to the empowerment of autistic people, and all this in the name of neurodiversity. This is incomprehensible.
A few weeks ago, in conversation with a stranger, I was asked if it wouldn't be possible to compromise by collaborating with Autism Speaks on issues where our work might overlap. This is not possible. It will never be possible for me to work with Autism Speaks for as long as their philosophies, mission, and rhetoric remain the same as they are now. Our most basic goals are fundamentally and radically different. For you to ask me to cooperate with my oppressor is deeply insulting. I refuse to submit to complacency with the dominant narrative of autism as advanced by Autism Speaks, and I refuse to make myself complicit in my own oppression. Palestinian queer activist Haneen Maikey, founder of Al Qaws for Sexual and Gender Diversity in Palestinian Society, stated unequivocally that it is impossible for Al Qaws to collaborate with Israeli LGBTQ organizations for as long as they refuse to acknowledge the power differentials that privilege them while maintaining the colonialist occupation of Palestinian spaces and enabling their co-optation of the Palestinian queer movement. So it is also with us. We cannot compromise our struggle, our movement, our fight for justice, by attempting a futile "compromise" with an organization whose ultimate aim is our demise. And even if Autism Speaks has absolutely no direct involvement whatsoever with Mr. Robison's activities at William and Mary, he has already been positioned as a leader in the neurodiversity movement, and this rhetorical positioning already serves to co-opt the movement with Mr. Robison's work, which is decidedly
outside the neurodiversity movement and has been
repeatedly criticized from within it.
For others, especially non-disabled, neurotypicals, to suggest that all "awareness" is good or that Mr. Robison's appointment is progress due solely to his being autistic, is to undermine all that we have fought for in our struggle. I urge you to resist this latest iteration of the co-opting that inevitably comes with any movement for social justice. Audre Lorde wrote that "the master’s tools will never dismantle the master’s house." It is not possible to reform the pathology paradigm from within the organizations whose very existence serve to perpetuate and reinforce it. When the framework itself is flawed, there is no room for compromise. Accepting or condoning Mr. Robison's appointment within the context of a Neurodiversity Initiative only further allows this act to legitimate our co-opting by ideas that are decidedly not neurodiversity. We are compelled, then, to speak boldly and strongly in opposition to any attempt to co-opt the neurodiversity movement, or any insidious strategy to garner the appeasement of the very autistic activists who founded our movement and continue to resist the violence of ableist oppression. We must condemn the demand to become complicit in our own oppression.
Other Autistic Hoya articles on Autism Speaks:
Full transcript of Autism Speaks' 2009 PSA "I Am Autism" (separate trigger warning for burden, epidemic, pathology rhetoric):
I am autism. I'm visible in your children. But if I can help it, I am invisible to you until it's too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, "Who will take care of my child after I die?" And the truth is, I'm still winning. And you're scared. And you should be. I am autism. You ignored me. That was a mistake.
And to autism, I say, I am a father, a mother, a grandparent, brother, a sister. We will spend every waking hour trying to weaken you. We don't need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community. I am a parent riding towards you and you can push me off this horse time and time again but I will get up, climb back on, and ride on with the message. Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers and daughters and fathers and sons. We are the United Kingdom. The United States. China. Argentina. Russian. European Union. We are the United Nations. We are coming together in all climates. We call on all faiths. We search with technology and voodoo, prayer and herbs, kinetic studies, and a growing awareness you have never anticipated. We have had challenges, but we are the best when overcoming them. We speak the only language that matters—love for our children. Our capacity to love is greater than your capacity to overwhelm. Autism is naive. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them? That is autism's weakness. You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? You have not been properly introduced to this community of parents and grandparents, and siblings and friends, and schoolteachers and therapists, pediatricians and scientists. Autism if you are not scared, you should be. When you came for my child, you forgot. You came for me. Autism, are you listening?
