Zephyr Ash Ostrowski
“Where there is charity and wisdom, there is neither fear nor ignorance.” –St. Francis of Assisi
“There is nothing more frightful than ignorance in action.” –Johann Wolfgang von Goethe
“Where ignorance exists, myths flourish.” Norman Begg and Angus Nicoll
It doesn’t take long for a hurtful word or comment to make its way across the globe. The media eagerly reports on officials’ latest xenophobic remarks within minutes. Protesters will gather and complain for a corporation to sever ties with a controversial program or person. But this outrage somehow doesn’t happen with organizations that are directly tied to “helping” certain groups of marginalized people—and when said people speak out, their opinions are brushed away in favor of “better” ones that best fit the organization’s agenda.
In 2019, the autism community still faces this discrimination, specifically from the organization Autism Speaks.
To say the autistic community has had a strained relationship with Autism Speaks (AS) is an understatement. Ever since their formation in 2005, AS’s existence has been a point of contention, and their rhetoric has landed them in more than a few scuffles with autistic advocates. Between their 2007 merger with Cure Autism Now, their dogged support of the hoax-based claim that vaccines cause autism (only dropped in 2017), questionable allocations of their funding for autism, having their board consisting of primarily neurotypical people with a smattering of autistic people for show, there’s a lot to pick from in terms of shortcomings.
Despite fourteen years of pushback from autistic people and allies, not much has changed. For World Autism Awareness Day 2019, Autism Speaks’ Twitter feed focused solely on how neurotypical people celebrate autistic people like myself, save for one lone tweet from an autistic person. However, despite the many ways in which AS has failed the very community they are supposed to serve, there is one episode in their history that still sends shudders throughout the autistic communit—the notorious 2009 short film I Am Autism.
While I Am Autism is indeed inflammatory, it wasn’t Autism Speaks’ first brush with controversy in the film world. In 2006, they sponsored a documentary short called Autism Every Day that squarely focused on the parents of autistic children and the struggles involved with their children’s upbringing in the most catastrophic terms possible. Now, I’m not dismissing that parenting children, especially disabled children, is difficult. However, the film is problematic, and not only because there are three different cuts (the shortest version clocks in at seven minutes and is currently an unlisted video on the official Autism Speaks YouTube page). Autism Every Day is extremely exploitative in how the children are filmed, almost always in the middle of a meltdown or, as in one dehumanizing shot, of a mother wiping her son during a diaper change—keeping in line with the bizarre tendency to detail the toileting habits of autistic people in works from neurotypical perspectives (as recently happened in the British play All in a Row). Everyone in the Autism Every Day video is white, obliterating any sense of diversity—save for one autistic girl. The film’s main takeaway is that autism is a massive problem that will drain your finances and free time.
One of the most troubling parts of the video features former Autism Speaks executive Alison Singer. While her autistic daughter is present, Singer admits that she considered killing herself and her daughter by driving off a bridge, because of inadequate classrooms. The only reason Singer gives for not following through is the need to be present for her other, non-autistic child. Still, the admission of intent to commit filicide, especially when your child is disabled, should never be taken lightly.
It was later revealed in an article for WireTap Magazine that the mothers featured in Autism Every Day were told to have their children look ill-groomed, and to stop any treatments or supports, for a more “authentic” view. (The fact that the film starts off with the children in the middle of multiple meltdowns should raise red flags in anyone who is media-literate.) Understandably, Singer’s filicide remarks were met with harsh criticism from advocacy groups. And four days after the film debuted, Karen McCarron murdered her autistic daughter Katie. Whether or not Karen saw Autism Every Day is unknown, but the immediacy of that event has raised some eyebrows—and even now it’s not difficult to find viewpoints that we’re better off dead than alive and autistic.
Then, in September 2009, Autism Speaks produced I Am Autism—a film some autistic people still find so upsetting that they can’t even read the transcript. Consisting of home video footage of various autistic people, both alone and with family, it would be misleading to say that this was “created” by filmmaker Alfonso Cuaron and Autism Speaks board member Billy Mann (who provided the text) but rather “assembled.” I hesitate to use the term “edited” since the end results are well beneath Academy Award-winning director Cuaron’s usual caliber. But the public had few details about the film’s genesis until Mann made a lengthy post on his Facebook concerning the history of the short in February of this year—a half-hearted apology at best. (Mann removed the post on September 12, 2019, due to threatening messages against his family, but it was archived and transcribed.)
Originally, Mann planned to read a poem as a speech for a gathering of Britain’s cabinet, and some leaders in the autism community, involving statistics that were already known. However, Mann wasn’t too keen on the dryness of the figures because it “…won’t move anyone to see the urgency. It doesn’t capture any of what we experienced when Jasper (his child) was diagnosed or the actual grief you can feel for the loss of what you thought your child’s health was going to be.” Instead he wrote what became the text for the I Am Autism video, and after he read it there was not a dry eye in the house. Later that same night, Autism Speaks co-founders Bob and Suzanne Wright were hosting a private dinner. Suzanne told Billy that this message needed to be heard, and at the end of the event, she got him and Alfonso Cuaron to make the I Am Autism project come to life, even though noted autism researcher Simon Baron-Cohen worried that the “high functioning autistics (might) take offense to this notion.” (In short: yes, autistic people did.)
I Am Autism is divided into two distinct parts: the Dark and the Light, which are differentiated by the tone of voice, the language, and the music. Several sources point to the first half of I Am Autism being similar to the text in the 1954 polio film Taming the Crippler, but similar sentiments can be found in the 1948 March of Dimes fundraiser film The Crippler and other polio-centric pieces of the era. (Unlike autism, however, polio can be a literal death sentence.)
In the Dark, and in a brooding voice not unlike typical portrayals of Satan, “Autism” tells you how it works “faster than pediatric AIDS, cancer, and diabetes combined,” causes your marriage to fail, bankrupts you, slaughters your social life, crushes all hope, among other fear mongering phrases. Footage of its “victims” clad in white shirts are shown to us. Some of these shots are of candid moments of stimming or playing in the water; the rest are all clearly staged with each person standing or sitting in rigid positions. Diversity isn’t exactly present as most of the people shown are white males, save a sprinkling of girls and minorities. Granted, this was when the high male ratio statistic was touted, leaving blue to be the chosen color to represent autism awareness because of the biased concept that blue is a boy’s color. “Autism” ends its speech even more unpleasantly, by saying that “you should be scared” and it was a “mistake” to ignore Autism, while strained children’s screams enter the soundtrack.
But hark! What blue light through yonder window breaks? Why, it is the Light, the Autism Parents, here to scare off the beast that is Autism with the power of love and caring! I don’t blame you if Care Bears comes into your mind at this point, because the rest of the script sounds like the locker room motivation speech in every sports film. Unsurprisingly, the parents speak over their autistic progeny as they enter the frame to stand in solidarity. They announce that “We are Qatar…the United States…the United Nations” in an effort to state that autism knows no borders (which is a true statement). In what is one of the greater ironies within the autism community, we hear this quote:
“You think because some of our children cannot speak, we cannot hear them? That is autism’s
There’s quite a bit to unpack here. First of all, verbal communication is not the only form of
communication in existence. Autistic advocates like Amy Sequenzia prefer to type to communicate rather than using mouthparts. Also, the emphasis on autism affecting only children reinforces the belief that autism ends at eighteen (it doesn’t). The film also reinforces misconceptions that autistic people who use clear verbal communication to express opinions and ideas aren’t “autistic enough” to claim the autism label, which leads to weird gatekeeping with goalposts that are always moving. And that’s just one of many battles still affecting autistic people, aside from our push to remove functioning labels in favor of the terms “high support” and “low support,” eliminate sub-minimum wage, push for support in adulthood beyond the transition period, and boost the employment rate for autistic people—among other woefully underfunded and understudied ventures.
I Am Autism ends with the question of “Autism, are you listening?” Well, people did listen and their reactions were swift. After the film’s debut, many autism advocates and disability organizations protested by using press releases, video parodies, and public demonstrations. Autism Speaks’ chief community officer Marc Sirkin responded with an interview, saying that “We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.” This particular quote rings hollow as years have passed yet autistic people still have to fight to have their perspectives recognized. At the time, however, and after a few weeks of protest Autism Speaks removed the video from their website and eventually their YouTube channel. (Fans of Mystery Science Theater 3000 will remember that show’s end credits mantra, asking viewers to “Keep Circulating the Tapes” so that they will not be forgotten. I Am Autism can still be found on a handful of YouTube channels, as well as Vimeo.)
There have been few apologies for I Am Autism. Billy Mann only looked back in regret seven months ago. Alfonso Cuaron’s take is harder to find; sources tell me he apologized while doing some press for his movie Gravity, but the footage has proved difficult to track down. And Autism Speaks itself still hasn’t apologized. Yes, their rhetoric has changed a bit, but I Am Autism remains one of their largest blemishes.
Their next big step backwards came in late 2013 when co-founder Suzanne Wright wrote an op-ed on Autism Speak’s own website about how autistic people “aren’t really living.” This caused enough pain in the community to cause John Elder Robinson to resign from the organization, leaving Autism Speaks without an autistic person in a position of leadership for two full years. The op-ed has since vanished entirely from AS’ site, but it’s not clear if this followed Wright’s death in 2016, or if it was due to public relations damage control.
At the moment, Americans are reeling from shootings in El Paso, Texas and Dayton, Ohio. Unfortunately these tragedies led to more targeting of marginalized people, as the President is suggesting bringing back institutions to keep people who are mentally ill from obtaining guns, instead of doing the sensible thing by passing tight legislation and requiring strong background checks. Such proposals are incredibly dangerous and lethal as institutionalized people, including many autistics, are already subject to various abuses in the name of “health” (the autistic community’s fight to close the Judge Rotenberg Center is one of particular concern). Even more distressing is that the person collaborating with Trump on this proposal is none other than Autism Speaks co-founder Bob Wright, who led the NBC television network during the era of Trump’s reality show The Apprentice.
Recently Autism Speaks made waves yet again due to hijacking Sesame Street’s autistic character Julia as a mascot for their “Screen for Autism” initiative, which includes a “100 Day Kit” that suggests parents of newly diagnosed autistic kids need to go through the five stages of grief. In response, the Autistic Self Advocacy Network issued a press release ending their partnership with Sesame Street—despite their long-standing participation in Julia’s creation and portrayal. (This was the second time in 2019 that autism and puppets resulted in controversy.)
After more than ten years of conflict, what is it that the autistic community wants from Autism Speaks? Some people consider the organization irredeemable. Others want a heartfelt apology and a complete overhaul. However, historically any apologies they do make have been either for the benefit of the neurotypical crowd, or Orwellian deletions on their website. As for the AS board, it isn’t enough to have neurotypical parents and autistic people at the table—the bottom line is that the autistic people must lead the conversation. It’s an uncomfortable thing for some people to reconcile, but if Autism Speaks is intent on making amends with those they’ve hurt (especially for a widely-recognized organization that has a history of not listening to the people they serve), this needs to happen. Until it does, it’s up to all of us to put the pressure on AS. To quote the final Pink Floyd song from their final album, The Endless River:
“It’s louder than words, the sum of our parts. The beat of our hearts is louder than words.”