08 November 2013

Co-Opting the Movement: Autism Speaks, John Elder Robison, and Complicity in Oppression

Trigger warning/content: Ableism, quotes of ableist speech, violence, discussion of murder, eugenics, co-optation, internalized ableism, erasure, mention of heterosexism.

Are you in or near Washington D.C.? Join us on November 13th in protesting Autism Speaks! Details at the Facebook page.

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?


  1. Holy crap that was an amazing piece of analysis and writing. Devastating critique. As a teacher, I see everyday evidence of neurodiversity. I had never really thought about mental "illness" (such as being bipolar) or cognitive "disorder" (such as autism) from that lens, but I can see now how indeed they are just an aspect of neurodiversity in the truest sense of the word. Recognizing the challenges for people with these various neurological profiles living harmoniously in our families and in society, and wanting to improve the situation in some fashion or another seems a good thing. Demonizing them under the guise of advocating for them, though is entirely another thing. Wow.

  2. Right on! Thank you for opening my eyes regarding Autism Speaks...not that I've ever paid them much mind....I'm too busy living life with my awesome 9 year old neurodiverse kiddo...

  3. I've said it before and I'll say it again and again and again:

    Autism Speaks represents autistic people in about the same way as Exodus International represented gay people.

  4. Hi Lydia. As a parent, I too am very concerned about the messaging of Autism Speaks: the fear-mongering, the "anti-autism" rhetoric, the emphasis on causes and cures instead of tools and resources to improve the lives of autistic people, the lack of representation and engagement of autistics in all levels of the organization. We have chosen not to participate in their fundraising events. But there are some things that AS has provided that I do co-opt in my life. For example, the symbol of the puzzle piece. Ironically, my husband and I had puzzle rings as our wedding bands, so it has a deeper meaning for our family. But I may wear a puzzle piece necklace because I want people to know that I'm proud of my son and who he is--it represents to me the beauty and uniqueness of his mind, which is often revealing a different way of looking at things to me, not the desire for a cure or a question I can't comprehend. I use the month of April to raise awareness via Facebook about autism, but again not relying on Autism Speaks for the material.

    I am truly sympathetic to your approach about John Elder Robison's engagement with Autism Speaks. I assume you have read some of his explanations about why he is choosing to participate in the conversation with them through the committees he's on. He has written about it on his personal blog and responded to questions on wrongplanet.net. JER is aware of the criticism and shares the concern about the lack of representation of autistic individuals in the organization. He is choosing to participate and hopes he can effect change from the inside out. I understand why that is not a choice you would make and respect your decision and perspective on it.

    It's hard for me to fault him for his decision, because I credit his book "Look Me in the Eye" with opening my own eyes to the reality of my son's diagnosis. Through his writing, JER helped me see autism for the first time through the eyes of an autistic individual who had lived a fascinating, full, interesting life. And reading this one man's memoir led me to seek out the stories of many others traveling this journey in their own way: Temple Grandin, Stephen Shore, Barb Retenbach, M Kelter, you. Hopefully, his participation in AS will lead others involved there to look deeper too--to seek the opinions and perspectives of more than just one autistic person.

  5. I don't believe, agree or hell like this article. I think it makes my sons disability seem like he's a burden and he wants to be.

    1. Rachel, have you ever considered that maybe your child is a human and not simply a disability? And maybe being human is not a specific formulation of being able-bodied, cis-normative, hetero-normative, and/or rich? Maybe we can define our lives for whom we are, rather than a world defining the value of our lives based on conforming to theirs? My worth as a human being NOT defined by the money I make nor my marital status nor social status.

    2. The point of literally this entire blog is the exact OPPOSITE of "autistic people are burdens." (They are not.)

      If what you're saying here is that your son is a burden, and this post makes it seem as if he "wants to be [a burden]," then you are the one with the problem, not this post and not your son. I seriously hope I'm misunderstanding you and you're not really saying that.

    3. Maybe Rachel is referring to the text of the PSA? Not meaning the "article" which would more likely refer to the blog post itself?

      I sometimes say a word different than I mean, and it can even happen when I type.

      And the PSA form Autism Speaks definitely does sound like it says an autistic child is not only a burden but wants to be one or doesn't care about anyone else.

      Well, that's what I hope happened, anyway.

  6. Right on, spot on, and keep on, Lydia! You deconstruct the madness called Autism Speaks very well. If only the mass media would get this message...then the AS well oiled machine could rust.

  7. Hello, Lydia! Thank you for standing up to the bigoted nonsense of the hate group that is Autism Speaks.

    Oh, by the way, it seems that John Elder has already dissociated himself with Autism Speaks. Apparently, he did not appreciate the ableist agenda that Suzanne is shoving in to the American people. Link to his post is here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

  8. Okay, I have a silly idea. How about we advertise for Autism Squeaks, especially their 'successful' 'cures' for Autism. After all, if it could work for the ex-gay movement, maybe it could work as an ex-Autistic movement!

  9. Only four days following the release of "Autism Every Day," pathologist Karen McCarron smothered her autistic daughter with a garbage bag.

    Late for the party, but I wanted to bring up that the same weekend Katie was murdered by her mother, Christopher DeGroot, an autistic teenager, was murdered by his parents. As I recall, they each got six months. Six lousy months in prison for murder, what a joke.

  10. I have never liked/appreciated Autism Speaks, and often call them blautism speaks. That's all it is, blah blah blah, only, it's dangerous because parents are desperate for solutions to help and/or cure their children. How many parents listen to their children, or try other forms of communications? I am not saying all parents are like this. I am speaking of the parents who would rather see their child harmed in the name of "helping" them. I am speaking of the parents who talk about their autistic child while they are in the same room. I, being blind as well as an aspie, did not know that when the mother in that crappy/scary Autism Everyday film was talking about driving off a bridge with her child in the car, that she was in the room. That makes me very sad for such a child, as does the idea that some parents have that they are somehow being punished by having to care for an autistic child. I don't understand how anyone can rationalize such cruelty. Am I missing something here?

    1. Maaaaybe? Dr. Sam Vaknin, himself a recovering narcissist, has theorized that all parents are a little narcissistic. Not necessarily full blown NPD, but that the lifestyle lines up pretty well with a lot of milder narcissistic tendencies observed in humanity- and this viewpoint explains a lot of the self-obsession, the projective identity, the hot/cold (or push/pull) relational cycles, the dramatic power plays, the glee parental figures take in confusing or dizzying their small helpless child while surrounded by laughing adults, the verbal and emotional abuse that so many people have experienced from their parents, the complaints from well-off parents that putting a kid through college is breaking the bank while they stuff their house with barely-used expensive electronics, etc.

      This stuff all pales in comparison with murder but if you've seen the foul underbelly of narcissism, we might be able to imagine how parents can choose to do such selfish, callous and *control-focused* things. Hell, I had to turn into a frequent liar to survive my childhood home. I think most narcissists would choose not to murder because of the risk to their own freedom, but they are also known to abandon conventional logic and walk a purely antisocial path if they receive a narcissistic injury- say, one's allistic child needing her less, or one's autistic child not living up to his fantasies of glory and vicarious living. Ultimately I think this kind of murder is about exerting control over one's environment and culture. That's why I think narcissism could be the culprit- imagine arrogating to yourself the power to make one child stop living and imagining you can turn the scenario into a healthy outcome for your family and community. In a way these people are self-deifying, or it may also be appropriate to call them false prophets of public health.

      I may be projecting, here, myself, TBF. My parents were abusive allistics, at least one with what was clearly NPD and certain traits evident in the other, in hindsight. But really chewing on Vaknin's assertion made my experiences start to click into place and make sense to me. Since I last read his writing on the topic, he seems to have expanded the theory to blame the rituals of infant care for turning parents into narcissists, rather than implying that parents must have been narcissistic to contemplate reproducing, as was my previous understanding of his work. When I get more sleep I'll have to dig into it and see if he finds a source of narcissism in the lives of adoptive parents who start with an older child.

      I don't always agree with Sam and his formal credentials are shaky but growing up narcissistic, in a narcissistic home, in what he now 'diagnoses' as a narcissistic country, has certainly given him food for thought and he has done a lot with it. Caveat lector, since you can get there quickly from the linked site: His political writing is kind of a mess, taking a radical perspective when it suits the tone he's going for, while gussying up centrist platitudes as meaningful conclusions (i.e. that the existence and appeal of both communism and fascism can be reduced to one or two purportedly common elements) before using *those* as the basis for further thought experiments. Obviously as a libertarian communist and committed antifascist I find this quite absurd and ahistorical, though of course both political tendencies flourish in a handful of common contexts like economic recession and constitutional crisis. Being on a mission to psychoanalyze the universe, good ol' Vak has other explanations.

      ANyway: http://samvak.tripod.com/parent.html

  11. Well, it is interesting that John Elder Robison no longer works with Autism Speaks. Could someone post that link?

    1. Amen! So proud of him. He has my utmost respect. Switched On, his latest work, is fascinating and an inestimable contribution to understanding brain science, emotion, autism, empathy, and so much more.


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