by Eric Garcia
What was especially shocking about Harkin asking these questions was that he was the chief sponsor of the Americans with Disabilities Act. Harkin’s history as a disability advocate—he delivered a floor speech in sign language upon the act’s passage in 1990—implies that he was not acting maliciously. Rather, as a policymaker, he was echoing his constituents who had asked him about vaccines.
“I went through a period where I talked to so many people who had children with autism who became convinced that it was caused by vaccines,” Harkin told me. “So, I said it’s worth a study. It’s worth looking at. I still feel that there’s no real evidence that vaccines have anything to do with autism. However, I still feel that the regimen for vaccines for babies is still too ambitious.”
Even though Harkin is walking back on the idea that vaccines cause autism, he still parroted the talking point that spacing out vaccines would be better (in fact, falling behind the vaccine schedule could leave children more vulnerable to diseases). Unfortunately, the tireless efforts of scientists, self-advocates, and public health officials still have not quieted the continued mistrust of vaccines. Furthermore, the fact that many people see vaccinations as a conspiracy means they are unconvinced by logic and the reasoning of experts. They perceive the autism/vaccine debate as an attempt to silence them for telling the truth.
The vaccine debate also divided many within Autism Speaks. In 2007, Katie Wright, the mother of autistic son Christian, placed herself on the side of “the Mercurys,” a faction named for their belief that mercury in vaccines is a cause of autism. Her parents and the organization’s founders, Bob and Suzanne Wright, put out a statement saying “Katie Wright is not a spokesperson” and that “her personal views differ from ours.” Alison Singer, who was the Autism Speaks chief executive, quit the organization in 2009 because she felt it focused too much money on the link between autism and vaccines. Singer would later go on to start the Autism Science Foundation.
Vaccines came to dominate much of the political discourse about autism on the presidential campaign trail too. In 2008, Republican presidential nominee Senator John McCain and Democratic nominee Senator Barack Obama spoke about the spike in autism diagnoses and a potential connection to vaccines.
“We’ve seen just a skyrocketing autism rate. Some people are suspicious that it’s connected to the vaccines, this person included,” Obama said in reference to a person in the crowd at a rally in Pennsylvania. “The science right now is inconclusive, but we have to research it.” At a rally in Texas, Obama’s Republican opponent, McCain, said that it was “indisputable” that autism was “on the rise” among children. “And we go back and forth and there’s strong evidence that indicates it’s got to do with a preservative in vaccines.”
While Obama dropped the language about vaccines, his rhetoric at times perpetuated faulty ideas about autism. In 2013, he said, “We’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke.”
It’s unfortunate that the debate about vaccines gained so much steam in the twenty-first century, because it is completely divorced from the needs of autistic people. These politicians and advocates were not helping autistic young adults who wanted to go to college. They ignored the community’s difficulties with unemployment and the question of whether autistic people should be paid subminimum wage. Anti-vaccine quackery infected our politics—ironically—and wrought havoc on America’s body politic. And like any other illness, the group with the least amount of protections—in this case, autistic people, who had few allies and little political capital—was the hardest hit.
The Self-Advocacy Movement
While politicians bickered over vaccines, and parents dominated the advocacy movement, a progressive undercurrent was slowly rising to the surface.
In 1993, Jim Sinclair, one of the cofounders of Autism Network International, delivered an address titled “Don’t Mourn for Us.” Sinclair, who identifies as intersex, delivered the speech in response to hearing parents talk about grieving for their autistic children. Sinclair argued that the parents’ grief did not stem from autism itself but rather the loss of the child they’d hoped to have.
In this same speech, Sinclair introduced a radical idea: “Autism is a way of being. It is not possible to separate the person from the autism,” they said. “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is ‘I wish the autistic child I have did not exist.’”
More than a decade before the Combating Autism Act and George W. Bush’s search for a cure, Sinclair pointed out the hurt caused by this rhetoric. They said that when autistic people hear this, they hear “that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”
Sinclair’s words paved the way for shifting the onus of change away from autistic individuals and onto society as a whole. “Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us,” they said. “Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it—and then do something about it.”
Sinclair’s lecture served as a spark for the neurodiversity movement, the concept that autism and other disabilities, like dyslexia, dyspraxia, ADHD, and so on, are normal variations in the human population and do not require a cure but rather accommodation and acceptance. Sinclair also started Autreat, a getaway for autistic people where they could be themselves. The work of Sinclair and others, like activist and artist Donna Williams, whose book Nobody Nowhere was one of the first memoirs by an autistic adult, and Xenia Grant, laid the groundwork for future advocates.
The fear of becoming a “self-narrating zoo exhibit,” as Sinclair put it, is one reason I did not want this book to become a memoir. I do not fault other autistic people’s decisions to write memoirs. They were integral to getting nonautistic audiences to understand that autistic people had agency, and those works have had a great influence on me. But when I decided to start writing about autism as an autistic person, I chose to place myself within the larger context of autism’s narrative. I know plenty of parents clamor for stories of autistic people like me as inspiration, but the truth is, I’m not special. I want them to see my story as a projector that broadcasts the stories of other autistic people. If I am going to write about myself, I am taking as many autistic people as I can along with me.
Ari Ne’eman, the cofounder of the Autism Self Advocacy Network, isn’t much interested in putting his narrative on display either. The first time I interviewed him—in 2015, for my piece for National Journal—he informed me he was twelve when he was diagnosed with Asperger’s syndrome, then he went on to talk about policy. Nowadays, Ne’eman is well known as an outspoken advocate for the rights of autistic people and disabled people writ large. But even before he founded ASAN in 2006 with Scott Robertson, he was reaching out to groups like Sinclair’s ANI and Aspies for Freedom—an organization that had petitioned the United Nations to recognize autistic people as a minority group—to learn how to affect policy outcomes.
“The way I saw the work we were doing in founding ASAN was building a sword and shield that could take these concepts that had been incubated by Jim Sinclair and [Autism Network International] and expand their reach and use them to defend our community against trends that were very alarming to many of us,” he told me. Similarly, ASAN adopted the disability rights mantra “Nothing about us without us” as its slogan, firmly declaring its goals in terms of disability rights.
The disability rights lens was apparent in Ne’eman’s and ASAN’s opposition to NYU’s ad campaign. Ne’eman successfully coordinated with prominent disability rights activists and created a media pressure campaign to get NYU to pull the ads. ASAN, while still much smaller and less funded than groups like Autism Speaks, would grow in influence over time. In addition, it launched its Autism Campus Inclusion Leadership Academy, which helps autistic college students better adv
ocate for themselves on their own college campuses. Some of the people included in this book are alumni of the program.
Eventually, Ne’eman was appointed by President Barack Obama to serve on the National Council on Disability and was a public member of the Interagency Autism Coordinating Committee, which became a federal advisory committee under the initial Combating Autism Act. The Combating Autism Act was reauthorized in 2011, but when it was up for reauthorization again in 2014, autistic self-advocates began an aggressive campaign to rename the law, using the Twitter hashtag #StopCombatingMe. The legislation was reauthorized as the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act.
Thanks to the work of advocates like Ne’eman, the culture around autism began changing, and in turn, the political rhetoric changed as well. During his last year as president, Obama guest-edited an issue of Wired magazine. In an interview, Obama was asked about autistic researcher Temple Grandin’s theory that Mozart, Nicola Tesla, and Albert Einstein were autistic. Obama responded by saying, “They might be on the spectrum,” showing he understood the vernacular of autism.
In that same interview, when he was asked about what would happen to society if autism was eliminated, he said, “That goes to the larger issue that we wrestle with all the time around [artificial intelligence]. Part of what makes us human are [sic] the kinks. They’re the mutations, the outliers, the flaws that create art or the new invention, right? We have to assume that if a system is perfect, then it’s static. And part of what makes us who we are, and part of what makes us alive, is that we’re dynamic and we’re surprised.”
Of course, Obama was succeeded by Donald Trump, who has a fraught history with autism. Bob Wright, the founder of Autism Speaks, tweeted his support of Trump during the 2016 campaign. But their relationship goes back years. When Wright ran GE Capital, the financial services division of General Electric, Trump, then at the peak of his business-development game, tried to persuade Wright to move the offices of RCA and NBC, which GE had just acquired, to one of a planned series of towers he was going to call Television City, but the pushback scared away NBC. Wright was also head of NBC/Universal when Trump’s reality television show The Apprentice first aired, in 2004.
Trump has been generally friendly toward Wright’s ideas about autism (Wright stepped down as Autism Speaks chairman in 2015). Wright wrote in his memoir that his wife was “bitterly disappointed” that Obama failed to light the White House blue, which was then the color of the organization’s logo, on World Autism Awareness Day. Trump did so his first year and in his proclamation for Autism Awareness Day on April 2, 2017, he said his administration “is committed to promoting greater knowledge of ASDs and encouraging innovation that will lead to new treatments and cures for autism.”
Trump’s decision to do this angered many autistic self-advocates and further showed the divide between them and the Autism Speaks organization. For the nonprofit’s first ten years, none of its board members were openly autistic, and at the same time, many autistic people vocalized that they did not want to be cured. Similarly, in 2009, the organization put out an ad directed by Academy Award–winning director Alfonso Cuarón titled “I Am Autism,” which depicted autism as a menacing force.
“I know where you live and guess what? I live there too,” the voice-over said, adding that it worked faster than deadly diseases like pediatric AIDS, cancer, and diabetes combined. “And if you are happily married, I will make sure that your marriage fails,” the voice went on, pledging to bankrupt families (there is some irony, of course, that a millionaire executive’s charity would put out such an ad). The ad ultimately faced massive pushback, and it was removed from its website.
In 2013, Suzanne Wright posted a piece on the nonprofit’s website criticizing the lack of action on autism, saying, “We’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing” and lamenting, “These families are not living. They are existing.” Once again, the narrative turned to mourning families of autistic people. It wasn’t autism that caused parents to “lose touch with their children”; it was a lack of understanding about autism. Yes, there are difficulties accessing services for autistic people, but to portray autism as a tragedy is to demean the value and lives of autistic people and turn them into burdens. The op-ed was so offensive to John Elder Robison, the autistic author of Look Me in the Eye, that he resigned from the Autism Speaks treatment and advisory boards.
“That’s a tagline for fundraising,” Robison said of that tragedy-centric tactic back in 2015. “But I think that, if you’re leading an organization that represents autistic people and you say things like that, you have to recognize the powerfully corrosive effect that will have on the psyches of people who are themselves autistic.”
Separate from Trump’s connections to Autism Speaks, during the 2016 campaign, Trump reportedly met with Andrew Wakefield, the discredited author of the infamous vaccine study.
Ironically, Autism Speaks removed language about a “cure” from its mission statement in 2016, saying on its website that “research found that there is no single ‘autism,’” and that science revealed that “there will be no single ‘cure.’”
The year before, in 2015, Autism Speaks announced the first two autistic members appointed to its board of directors, Stephen Shore and Valerie Paradiz, who is now a vice president of the organization. In 2020, Autism Speaks replaced its blue puzzle-piece logo with a multicolored piece, which was said to reflect the variety within the autism spectrum. But for many autistic people, those actions came too late and did not undo the damage done.
Since the rise of autistic advocates, many nonautistic advocates have contested their influence, saying that their resistance to a cure ignores autistic people who have higher support needs. Jonathan Shestak, the cofounder of Cure Autism Now (which would later be folded into Autism Speaks), criticized Ne’eman in the New York Times, saying, “He doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t.” Wright wrote in his memoir that “high-functioning autistic adults” do not “want to be associated with the autism spectrum.” Wright added that many of them “are satisfied being who they are.”
But this is a straw man, since many autistic people like me who have been considered high-functioning recognize that functioning labels do not always accurately describe them. Someone who on the surface might appear high-functioning can have difficulties that are different from those who require more supports. It is because we as autistic people realize that we have much in common with those who cannot speak or who need more services that we want to make the world more adaptable for them too.
Lydia X. Z. Brown, a lawyer and autistic activist, said in 2018 that anyone who is on the “right of the middle on the opposite end” of the spectrum is “closer to anyone who’s on the far autistic end than anyone on the neurotypical end.”
I know I can pass through this world without being detected as autistic. I am sure that many people will question whether I can accurately tell the stories of autistic people who are different from me. And the truth is, I couldn’t if I didn’t include their voices, which I am trying to do here. But in the same respect, the more I have learned about autism, the more I’ve realized that the differences between those of us who can go undetected and the more visibly autistic people are smaller than one would believe.
Furthermore, seeing and reading the work of autistic people with higher support needs helped me come to accept my own autism. The first time I saw an autistic person on the news was in 2007, when CNN medical correspondent Dr. Sanjay Gupta profiled Mel Baggs, who had posted a video on YouTube called In My Language. Baggs couldn’t speak but used their body to communicate, and seeing this, I felt chills. I felt as if I had been an immigrant in a foreign country my whole life and I’d just heard someone speak my native tongue. There might be different dialects, but we had similar grammar. I remember
my mom asking to change the channel because it brought back bad memories of me being bullied, but I couldn’t stop watching.
Functioning labels only go so far and don’t actually describe what autistic people can do—for example, whether they can speak and hold a job or not. Hari Srinivasan, one of the first nonspeaking autistic people admitted to the University of California, Berkeley, said the functioning labels are stigmatizing.
And many autistic self-advocates have worked to incorporate autistic people with intellectual disabilities into the movement. For example, as you will see later in this book, as companies have sought to hire more autistic people who need fewer supports, autistic self-advocates are working to ensure those with higher support needs get the same opportunities.
The movement to trust autistic self-advocates is one that is finally beginning to bear fruit. The Pennsylvania state legislative hopeful Jessica Benham got into autism advocacy when she met Cori Frazier, who was running the Pittsburgh wing of ASAN. After coming to meetings and getting involved, Benham started staying around the group in the basement of their local human-services building. As ASAN was moving away from a model that had local chapters, Frazier, Benham, and others decided to start the Pittsburgh Center for Autistic Advocacy.
“[It] does everything from peer support to political advocacy to training both for self-advocates and for organizations,” Benham told me. “And it’s been really exciting to be part of that and to watch that grow and develop into something that’s really built a space for the autistic community here in Pittsburgh.”
Outlets that focus on autistic people’s experiences laid the groundwork for Benham seeking office; they give autistic people agency and a platform to change policy that inevitably encourages some to run for office themselves.
And just as their advocacy will look different, autistic people campaign differently than their neurotypical peers. Benham recognizes that on the campaign trail, there are pluses and drawbacks to being autistic. She knows that campaigning as it exists now is not accessible. At times, she deals with the same executive-functioning difficulties many autistic people have, like forgetting to eat, which is when having a staff is helpful.