Saturday, September 14, 2019

Distorting DEEJ: Deconstructing A Misinformed Literature Review

Production photo of David Jame Savarese (Deej), a thin white male  with short, cropped hair and glasses, wearing a light blue polo shirt and beige  slacks, seated at a table facing his girlfriend who is seated in a power chair  back to us, facing  him. A man holding a camera is standing to their left and  caught in the act of filming them. ©DEEJ movie
[image: Production photo of David Jame Savarese (Deej), a thin white male
with short, cropped hair and glasses, wearing a light blue polo shirt and beige
slacks, seated at a table facing his girlfriend who is seated in a power chair
back to us, facing  him. A man holding a camera is standing to their left and
caught in the act of filming them. ©DEEJ movie]

Kerima Çevik

"A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data." Wikipedia on Confirmation Bias

I understand that professionals who aren't familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don't accept it, but I understand it. We're human and all of us have biases. When bias becomes a problem is when academic work begins with a conclusion, for example that non-speaking autistic people must be presumed incompetent. I get seriously disturbed when scientists who know better lay out academic work to support a bias. It is personal to me, and so hurtful that I felt the need to write why.

I am an African American woman. What that means is that I and everyone who shares my race continue to be targets of something called scientific racism. Scientific racism, at its core,  is misusing scientific structure and scientific reasoning to support false claims of racial superiority in general, and was one way of oppressing Black people in particular—which makes me more alert to this kind of bias when I see it used against other marginalized groups.

I am also very outspoken about the unjust treatment of autistics like my son. Full disclosure, my son is non-speaking and uses an iPad with the app TouchChat HD as his primary communication support, as part of his multi-modal communication system. He does not use FC (Facilitated Communication) or RPM (Rapid Prompting Method). But for anyone who doesn’t know any better and is watching an AAC (Adaptive and Augmentative Communication) user in a documentary, my son and someone who used those communication methods would look similar.

Representation of true non-speakers in the media is usually limited to inspiration trash or objectification to gain funding. That is why it was gratifying to see DEEJ, an award-winning documentary about DJ “Deej” Savarese, an AAC-using non-speaking autistic adult with complex support needs. This kind of representation for us people of color—outside of stereotyping in media—also began with movies, television series, and groundbreaking documentaries. There is no acceptance in a society where groups of people are not represented as three-dimensional human beings. I watched DEEJ and came away feeling it had earned its awards.

So when Social psychologist Craig Foster's article, "Deej-a Vu: Documentary Revisits Facilitated Communication Pseudoscience" was published in Behavioral Interventions in August of this year, I read the title and flinched. Not looking forward to doing so at all, I acquired and read the review. This is what I learned:

Foster's background is not in the diagnosis, care, or treatment of autism. He does not have a background in speech pathology or Augmentative and Alternative Communication (AAC). Foster's focus seems limited to skepticism and concussion non-disclosure research. I wonder why he chose to write about DEEJ? He could have simply done his review on the history of Facilitated Communication (FC). Instead, his deliberate targeting of Savarese by compiling any negative literature on FC he could find comes off as a reductive approach to the documentary DEEJ, as well as one that aims to erase the film’s actual message of inclusion and representation.

Perhaps Foster is uninformed about the catastrophic role psychologists have played in the history of autism. From Asperger’s alleged Nazi collaboration, to the debacle and destroyed lives of Bruno Bettleheim’s expansion of Kanner’s “refrigerator moms” view of autism, to Ivar Lovaas and his conversion therapy cruelties, psychology has continued to destroy autistic lives. I’d like to say this has changed, but autistic children are still being given electric shock punishments at the Judge Rotenberg Center “for their own good.” With this kind of track record, the task before these professionals should be to regain the trust of their non-speaking autistic clients and their families. But here, Foster singles out a non-speaking autistic and his family to push the regressive idea that we must be skeptical of any non-speaking person's claim to competence.

Foster's review tries to rebrand the DEEJ documentary on inclusion as some sort of infomercial for FC. He claims he was filtering and inserting FC as a topic, so skepticism could be placed in the minds of those evaluating the film. I find this unnecessary. If the viewer doesn't know what FC is, what they would see in the film is someone using pads, laptops, and in some cases, pen and ruled notebook pads as AAC support. When I viewed the film, I simply accepted the equipment as AAC support because the film made no effort to explain otherwise. FC was not the focus of the film, so it was neither emphasized nor discussed.

Foster's review cherry-picked only the scenes from the documentary showing the use of supported typing. He speculated about Deej's intelligence and competence to produce speech through AAC devices without having met, assessed, or researched anything about Deej, including how Deej communicates with support staff when they have not trained as FC facilitators or even how the Dynavox narrations were achieved in the documentary. Instead, Foster uses select scenes to conclude that Deej communicates entirely via FC, therefore, he must be presumed incompetent. There’s no mention of whether Foster followed up with anyone to verify his conjectures about the nature of Deej’s education, interactions with support staff, communication methods, or achievements.

I decided to do what Foster hadn't done. I reached out to the Savarese family. I learned from Deej himself that he has had 52 teachers, 22 professors, 18 school support assistants/facilitators, 15 after-school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. To my knowledge, Foster did not interview any of them. Foster commenting on Deej's diagnosis and the scope of his intelligence was a misuse of scientific reasoning.

To prove his point about FC, Foster also ignored scenes that complicated his thesis, like the scenes in which Deej toured Washington D.C. with his cousin. Deej's mother leaves a notepad of scripts with printed words so that the cousins can communicate by having Deej point to responses to any query by his cousin. Meaning Deej toured DC without a facilitator and communicated without FC. When Deej begins his pioneering attendance at Oberlin, he has support staff who are not trained in FC who help him transition. Yet Deej is seen making transitions and participating in activities that indicate competence. His efforts to self-regulate in response to his parents' requests for him to try and self-calm show receptive language acuity—he clearly understands what people are saying to him—and the cognitive competence to overcome moments of anxiety that might normally end in autistic meltdown or shutdown.

If Foster's literature review was stripped down to his analysis of Deej's competence based upon his viewing of a 72-minute documentary, Behavioral Intervention would have received intensive backlash for violation of section 7 in the American Psychiatric Association's (APA) Principles of Medical Ethics, otherwise known as the Goldwater Rule. The Goldwater Rule was put in place to keep mental health professionals from conjecturing a diagnosis of a public figure's competence without proper in-person examination and assessment. I believe that targeting the documentary, then using negative and sensationalized literature on FC as a weaponized tool to justify this sort of armchair diagnosis, is a violation of the Goldwater Rule by proxy.

Filtering and presenting this film as if its entire purpose was to promote FC is inaccurate at best. By forcing academic focus away from the documentary's themes of interdependence, inclusion, and the presumption of competence, Foster does harm not only to the FC community but to people like my son who continue to suffer maltreatment because of the same scientific ableism that produced Foster's review.

As we have no accurate way of measuring intelligence without language proficiency, and literacy is often denied to non-speaking individuals without AAC support of some kind, can any psychiatric professional generalize the latent intelligence of non-speaking people with intellectual and developmental disabilities (ID/DD)? Yet this is exactly what Foster does when he posits,"Other aspects of the documentary suggest that FC's purported ability to reveal hidden intelligence is once again illusory. When a speaker calls Deej's name for a National Honor Society ceremony, Deej's mother needs to prompt Deej to walk to the stage.

I confess I paused here and burst out laughing. Foster obviously doesn't know anything about autistic processing delays, or what event crowds, camera/cellphones flashing, and the roar of applause does to someone autistic in public spaces regardless of their degree of disability. Deej's disorientation during this event is unremarkable. He's autistic! His response was a completely natural reaction for any autistic adult. In fact, this is why his father’s surprised reaction and verbal exchange between his parents ended in their rushing to provide support. Just because an autistic person wants to try to get through a high-stress event on their own doesn't mean support persons shouldn't be there in case things go wrong. Foster's mistaken analysis of this scene does not support his thesis. It simply verifies that David James Savarese is an autistic adult who reacts as any autistic adult would in a similar situation.

Foster plows ahead with his thesis: "When Deej and his mother pack to move to Oberlin, Deej's mother explains to Deej that some clothes are too small—he keeps them for sentimental reasons. Moments like these are easy to miss, perhaps because it is easy to forget the expectations that the documentary sets for Deej. These moments might seem compatible with a young man who has autism with complex communication needs, but they do not seem compatible with a young man who has earned his enrollment in Oberlin College."

Again Foster's lack of experience with autistic people and literature about autistic life experiences is evident in this paragraph. Just last month, a mother went through great lengths and succeeded in getting a larger size of the only dress her autistic daughter would wear. Presenting a common autistic behavior—intense attachment to meaningful objects—that is typical regardless of communication or support needs as evidence of incompetence doesn't really stand up to scrutiny.

Even if we remove Deej's disability from his desire to keep clothes he's outgrown, Foster would still be off the mark in his conjecture. Many of my high school classmates left home for college with stuffed animals, dolls, favorite clothing they had outgrown, even baby blankets that held special memories for them. No one claimed this proved they were not competent to earn their places at their universities.

I have questions about Foster's superimposing negative FC literature on the mention of sexual abuse in the documentary as well. He said: "Messages about human sexuality also reflect old problems with FC. Facilitated communication has generated accusations that specific persons have molested FC users sexually. When subsequent investigations failed to support the FC-generated accusations (e.g., Siegel, 1995), it forced additional consideration about who was doing the accusing: the user or the facilitator? Likewise, when Deej's computer-generated voiceover states “I see scary people who want sex” and his poetry refers to prostitution, viewers should wonder whether these words reflect Deej's perspective on sexuality or a facilitator's speculation."

Let's address the topic of FC-generated false reporting of sex crimes. Foster cites Siegel, 1995. But he doesn't mention that this brief used only two subjects and did no general statistical analysis comparing the number of FC generated false reports to the number of false reports of the same crimes in the overall population. We all agree that the risk of a false indictment is dangerous. But we have no statistical understanding of how FC related false indictments compare to non-FC related false indictments. I am trying to understand how Siegel can generalize, or come to any conclusion from, her sample of two subjects, that the risk of false reporting/indictment is higher or lower than the general population. Siegel found that communication wasn't established in these two subjects.

How can one confirm or deny anything without establishing communication with either subject? Dr. Siegel does not employ any other method of communication (a yes/no switch for example) to try and establish a baseline. We do not know if Dr. Siegal had the specialized training for this type of investigation. We don't know how many interviews the two subjects were made to submit to because of their use of FC. Foster cites Dr. Siegel without mentioning her first sentence in paragraph 3 of the discussion section on page 325 where she states: "This study does not rule out the possibility that there are individuals who may communicate via facilitation when they cannot communicate orally, via sign language or via communication boards." Indeed it cannot rule out the possibility because only two subjects were evaluated.

We are currently witnesses to the extremes of skepticism against science. I am concerned that approaching topics like FC that require longitudinal study, with confirmation bias like Foster’s, will push public opinion further away from the scientific community.

Foster's brief exploration of Deej as a vehicle for encouraging improper forms of scientific reasoning confused me. He says, "Deej, the person, is not necessarily representative of the diverse group of people who have complex communication needs. Even if Deej were to demonstrate hidden intelligence, it would not prove that hidden intelligence is widely prevalent. This hasty generalization could be akin to making a documentary about Lionel Messi and suggesting that Argentinians are incredibly talented footballers. Hansson (2013) described the use of hand-picked examples as a "characteristic associated with pseudoscience."

But isn't Foster himself hand-picking examples of Deej's documentary and lived experience to frame his own thesis in this review? Does Foster's literature review then fit Hansson's description of a characteristic associated with pseudoscience? Or is this further evidence of confirmation bias in Foster's review?

I can't stress enough that Foster's statements reveal a lack of understanding of the challenges faced by non-speaking AAC users of any kind. When he said, "Still, evidence that Deej can communicate hidden intelligence independently is simply not there," I again feel Foster is evaluating from his armchair without factoring the impact of autistic comorbid conditions and characteristics in his conclusions. Again Foster has no qualitative research on Deej to back up his assertion.

Foster's unconcerned opining of Deej's degree of disability is very similar to the racial bias found in medical doctors. I actually feel that if FC wasn't part of the DEEJ documentary at all, Foster would have still approached his literary review with the presumption that Deej was incompetent, given his statment, "The documentary instead provides explanations for the lack of independent communication that follow the explanations provided by FC supporters generally. Deej's computer-generated voiceover states that no assistive device can do what his mother does and that sometimes he experiences anxiety that disrupts his ability to communicate."

I disagree with Foster's implication that Deej is discussing his mother's role as a facilitator alone. Foster does not mention the scene in the film when Deej's grandparents tell his mother that she is the only consistent thing in Deej's life during his stressful transition from the home he's known most of his life to another state and an unknown university campus. Deej, in essence, loses everything from proximity to friends who have known him since early childhood to his father who can't be with them during this transition. Foster also excludes the fact that by the end of the documentary, Deej has transitioned to the Oberlin dorms, and his mother's role is reduced to simply managing his support team. The documentary mentions Deej’s relief at having his mother return to the role of just being his mother.

I want to talk about Foster's mention of the use of a pen as a prompting object to direct Deej's typing. There is tremendous hypocrisy in how psychologists compare their own methods to those used to support typing. Hand over hand techniques and other invasive prompting is common practice in Applied Behavioral Analysis (ABA). ABA is the only therapy for autism with mandated insurance coverage in most states despite valid ethical concerns verified by recent research into ABA and PTSD in autistic clients. Behavioral psychologists do not claim that any writing done by hand over hand prompting is abusive of autistic clients. If you ask a behavioral psychologist why they are using hand over hand prompting they will tell you that the goal is to fade the invasive prompting over time so their clients eventually write independently. It is hypocrisy for psychologists to champion such methods, while dismissing the support of individuals who have physical barriers to typing.

While Foster included a non-apology to Deej's family consistent with his policy on respectful skepticism, any heartfelt sincerity in such apologies is lost if those delivering them are undermining a human being's right to be accepted as a competent contributing member of society while doing so.

And Foster's flawed literature review, unfortunately, introduces a taint of confirmation bias to any future publication he pens on this topic. The documentary DEEJ deserves better and so does Deej Savarese himself. I recommend that anyone viewing DEEJ watch the film with an open mind. No one's filtered view, including mine, should interfere with the sharing of one human being's story of adoption, freedom, and hope for his marginalized peers.


Friday, September 13, 2019

Things Left Unsaid: "I Am Autism" 10 Years Later

 Screen capture from the Autism Speaks Video "I Am Autism," with  an African American child sitting on a slide, facing away from the camera. The YouTube video toolbar is visible, above title text reading, "I Am Autism commercial by Autism Speaks"
[image: Screen capture from the Autism Speaks video I Am Autism, with
an African American child sitting on a slide, facing away from the camera.
The YouTube video toolbar is visible, above title text reading,
"I Am Autism commercial by Autism Speaks".]

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.”