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Opinion ||: Autism Has Spoken — It’s Time for Alpha Xi Delta to Listen

Noah Leibowitz

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On April 4, American University’s Alpha Xi Delta chapter presented an Autism Awareness Panel, intended to inform attendees about the realities of autism and encourage them to support Autism Speaks, the world’s leading autism science and advocacy organization. Autism Speaks has been Alpha Xi Delta’s national philanthropic partner since 2009. For over a decade, Autism Speaks has been the subject of very strong criticism from members of the autistic community. Aware of the rapidly growing controversy, I attended the panel, hoping to possibly hear the panelists discuss the wealth of criticism that the organization has received.

One thing that instantly stuck out at the panel was the fact that none of the three panelists were autistic. In light of this, it wasn’t very surprising that only one panelist even vaguely referenced the controversy surrounding Autism Speaks. However, as the panel was about to come to an end, a student in the audience got up from her seat, quickly walked to the front of the room and took hold of the microphone.

“Hi,” she said. “My name’s Meredith, and I’m actually autistic. As you might have noticed, this panel is kind of weird. It’s been marketed as an autism awareness panel, right? But there are no actually autistic people on it. Sure, they each have an autistic brother, but that’s nowhere near actual representation. It’d be like having an LGBT awareness panel made up of straight people. Oh, but they have a gay brother. That makes them experts on it, right?”

While she may have disrupted Alpha Xi Delta’s panel, Meredith Bartley, a freshman in the School of Communications, did not originally intend to resort to such an extreme measure to get her point across. 

“I reached out to Alpha Xi Delta on Thursday,” she explained to the audience. “I offered to be a part of the panel to make it less problematic… Last night, they told me it wouldn’t be possible, because of ‘logistics.’ So, they couldn’t just add a mic and a chair.”

Bartley believes that the true reason for her exclusion was not “logistics,” but an unspoken fear that she “would disrupt their tidy narrative of autism, the one perpetrated by Autism Speaks and a system that doesn’t let autistic people speak for ourselves.”

“When I reached out to the sorority on Thursday, I was calm and professional,” Bartley said. “I said nothing about Autism Speaks. I wanted to sit down and work with them, because I feel that the most important thing is having an autistic voice on this panel…I never intended to get up here and talk crap on Autism Speaks.”

Bartley advocated that Alpha Xi Delta educate themselves and provide more resources for the autistic community on campus. 

“I want there to be CDI workshops about neurodivergence, so groups like Alpha Xi Delta can invite educators in and learn,” Bartley said. “I want resources for autistic people and neurodivergent people of all types to be just as available on campus as those for LGBT students or first-generation students, and I want those resources to have no stigma attached. Autism Speaks is the elephant in the room in any discussions involving Alpha Xi Delta.”

Wrapping up her speech, Bartley left everyone in the room with a very clear message: “Autism Speaks doesn’t speak for me. These people can’t speak for me. I don’t claim that I speak for all autistic people, but you guys should have heard at least one voice tonight.” 

The American University chapter of Alpha Xi Delta was not able to comment.

There’s a myriad of reasons why a member of the autistic community would oppose Autism Speaks. 

First, Autism Speaks violates the most important tenet of disability activism, expressed in the popular mantra, “Nothing about us, without us!” The organization is run almost entirely by neurotypical people. Currently, only 2 of the 31 individuals on its Board of Directors are autistic, which is actually the highest number of autistic Board members in the organization’s history. Meanwhile, 12 board members represent major corporations.

In 2013, John Elder Robison, a well-respected author and autism advocate, who was the organization’s only autistic advisory board member at the time, resigned from Autism Speaks in protest

“Autism Speaks says it’s the advocacy group for people with autism and their families,” Robinson stated in his resignation letter. “It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

Second, Autism Speaks’ campaign strategies focus on conveying fear and pity and sometimes rely on false information. Their advertisements often feature disrespectful analogies, comparing being autistic to being kidnapped, having a fatal disease or dying in a natural disaster. In Autism Everyday, one of the organization’s most popular videos, which portrayed autism from the perspective of neurotypical mothers, former Autism Speaks board member Alison Singer openly expressed the desire to murder her autistic daughter. 

“I had sat in the car for about fifteen minutes and actually contemplated putting [my daughter] in the car and driving off the George Washington Bridge,” she said in the video. “It’s only because of [my other daughter], the fact that I had another child, that I probably didn’t do it.” As if her statement was not already dehumanizing enough, she said it while sitting right in front of her autistic daughter.

Third, Autism Speaks’ efforts often do more harm than good. Until just last year, the organization vehemently opposed vaccination, putting an extremely high priority on research efforts to prove that there is a link between vaccination and autism, even in the face of overwhelming evidence that stated otherwise. Over the years, several of the organization’s senior leaders have resigned in protest of its anti-vaccine agenda. The organization also utilized its strong lobbying power to block the inclusion of the Shakowsky Amendment in the 2014 Autism CARES ACT, which would have greatly increased the inclusion of autistic individuals in several committees and services pertaining to the autistic community. 

Furthermore, Autism Speaks has promoted the infamous Judge Rotenberg Center, while fully aware of the Center’s proud use of a variety of brutal torture methods, including electroshock, on disabled individuals without their consent, which has resulted in the deaths of at least six disabled individuals.

Fourth, Autism Speaks does very little to actually help the autistic community. The organization only spends 4 percent of its annual budget on “family service” grants, which provide direct aid to autistic individuals and their families. However, some of these grants are spent on applied behavior analysis (ABA) therapy, which has been deeply criticized by many autistic individuals and their family members for its disregard for consent and traumatic impact. Meanwhile, 33 percent of the annual budget is spent on media “awareness” and lobbying, which would not be such an issue if their awareness campaigns were not so dehumanizing to autistic individuals. Thirty-five percent of the annual budget is spent on research, but most of the research is focused on causation and “prevention,” while only a small portion of the research focuses on improving the quality of life for autistic individuals.

With so many reasons to oppose Autism Speaks, it’s no surprise that Bartley was prohibited from speaking on the panel. While her daring speech certainly had the most witnesses, it wasn’t the first time that an autistic student at AU addressed Alpha Xi Delta’s support of the organization. Last year, trans and disability rights activist Jes Grobman, who graduated from AU last semester, noticed that the Davenport Coffee Lounge was aiding the sorority’s fundraising efforts through the sale of a featured drink. In response, she gathered a group of students together and explained the enormous controversy surrounding Autism Speaks to the coffee lounge’s employees. Their efforts were successful, as there have been no such fundraising efforts at the Dav this year.

“As far as I’m concerned, Autism Speaks is a hate group, and any organization that supports them is complicit in the harm that they inflict on my community,” said Grobman, who was recently highlighted in a Spectrum News feature about the intersection of autism and trans identities.

AU’s chapter of Alpha Xi Delta is by no means the only group at fault. After all, Autism Speaks is Alpha Xi Delta’s national philanthropic partner. Other chapters of Alpha Xi Delta have done far worse than simply excluding autistic voices from their events. For example, at the October 2015 DC Walk Now for Autism Speaks, the George Mason University’s Alpha Xi Delta chapter quickly cut short a protest led by Rachel Best, the former DC chapter leader for the Autistic Self Advocacy Network.

“I was approached by two sisters from the GMU chapter who asked me if I was lost, if I was okay, if I needed help,” Best said. “They were using baby talk voices, not just sympathetic voices. They continued to do so even after I indicated that I knew what I was doing and where I was going… They called the cops to remove me.”

When the sisters of George Mason University’s chapter actively silenced autistic voices, they inflicted damage on a political level as well as on a personal level. 

“They made me feel small,” Best explained. “Infantilized. I’ve never felt smaller in my life. And then they made me feel like a criminal, like my perspective wasn’t even worth considering. They had clearly already made their minds up even when confronted with an autistic person that they claimed to be helping.” 

The GMU chapter could not be reached for comment.

Alpha Xi Delta cannot feign ignorance any longer. When the same dehumanizing attitude that Autism Speaks displays toward autistic people is so clearly reflected by the actions of individual sisters in Alpha Xi Delta, it is undeniable that the organization at large becomes complicit in the harm that Autism Speaks inflicts on the autistic community.

In light of the immeasurable damage that has been done to the autistic community by Autism Speaks and its supporters over the past 11 years, it is absolutely reprehensible for anyone, regardless of whatever affiliations they may have, to donate a single penny to Autism Speaks. This is especially true when there are so many organizations that are ethical and free of controversy. For example, The Autistic Self Advocacy Network (ASAN) and The Autism Women’s Network (AWN) are both fantastic organizations run by autistic people, for autistic people, in order to provide support, community and public policy advocacy. 

Yet Alpha Xi Delta has proudly raised over 3 million dollars for an organization that is nothing short of a hate group in the eyes of many outspoken autistic individuals. The sorority has repeatedly shown no regard whatsoever for the objections of the countless autistic voices that its own sisters have deliberately suppressed. If Alpha Xi Delta’s National Council had even the slightest bit of respect for the autistic community, it would have cut all ties with Autism Speaks a long time ago.

After all of the dehumanizing narratives it has helped promote, after all of the autistic voices it has deliberately ignored and suppressed, after all of the money it has helped raise to rob autistic individuals of their ability to advocate for themselves, Alpha Xi Delta and every single one of its members owes it to the autistic community to make things right. If the sisters of Alpha Xi Delta don’t want to be held responsible for Autism Speaks’ despicable practices, then maybe it’s time for them to find a new philanthropic partner: one that actually helps the autistic community.