We're Not Broken

by Eric Garcia

  Silberman wondered why the media was so fascinated by what caused autism while so many people suffered because of a lack of understanding about the condition. At some point, Silberman realized that part of the obsession was tied to the increase in diagnoses brought on by the changes to the DSM in the nineties. Even organizations like Autism Speaks used a graph shaped like a hockey stick to show a spike in autism diagnoses, which led to panicked news articles about an “epidemic.”

  “I thought, Somebody has to figure out why the estimates of prevalence went up so steeply. I just didn’t see anyone doing that,” Silberman told me. He began researching and stumbled across scholarly articles debunking the idea of an autism epidemic. “So, the more that I got into it, the more I had a gut feeling that something had gone wrong in autism history and that there was some information that had not been properly disseminated,” Silberman said.

  While writing the book, Silberman began to meet, interview, and interact with autistic people. He was invited to Autreat, the retreat in the woods for autistic adults, where he met a wide array of people on the spectrum, some of whom could not speak. The experience challenged his own preconceived notions—for instance, that autistic people didn’t date. While there, he met a couple who would rock back and forth and stim together and who later married.

  Despite not being autistic himself, as a gay man, Silberman felt he understood the plight of the autistic community. He too had experience with demeaning portrayals in the media, and when he was in high school, homosexuality was even listed in the DSM. Of course, as we saw earlier, plenty of autistic people are LGBTQ and experience a double portion of discrimination. The desire to eliminate the traits that make autistic people unique is rooted in the same impulse to suppress people from affirming their gender identity or sexuality.

  It was through Silberman’s time as a teaching assistant to Beat poet Allen Ginsberg that he saw what a gay man could do when he lived visibly. Today he lives with his husband, Keith Karraker, in San Francisco.

  “If you think that homosexuality or autism is rare, and these people are weird, then you don’t necessarily feel compelled to become part of a movement to recognize their autonomy and their civil rights,” he explained. “But I knew that the [autistic community] was one of the largest minorities in America, easily.” Silberman’s book came out just two years after the most recent version of the DSM placed all autistic people under the larger diagnosis of autism spectrum disorder and helped increase the public’s understanding about autism. Steve’s book was not the only book about autism at the time to focus on the narratives of autistic people. Lydia X. Z. Brown and Morénike Giwa Onaiwu, collaborated with E. Ashkenazy to release All the Weight of Our Dreams, a collection of writings that chronicled the experiences of autistic people of color. Barry Prizant’s Uniquely Human also emphasized a focus on celebrating autism and not seeing it as a deficit. He explicitly wrote that “autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick,” and the best way to help them wasn’t “to change them or fix them. We need to work to understand them and then change what we do.”

  Similarly, media discourse around autism has shifted. A 2020 study in Disability and Society surveyed 315 articles from the Washington Post from the beginning of 2007 to the end of 2016. The study found that over the decade of articles, there were increased mentions of neurodiversity and more inclusions of autistic people’s perspectives; articles describing autism’s strengths and discussing accommodations also increased, and there were fewer mentions of autism’s deficits, causes, and risk factors.

  The study showed that progress isn’t complete—the terms high-functioning and low-functioning continue to appear despite autistic people’s objections—but it does signify that the Post, the hometown paper for the nation’s capital, is getting better at including more perspectives. Anecdotally, I can vouch for this progress because of my work at the organization. During the last year of the study, I was contacted by the paper’s PostEverything section to write a piece on autism, sex, and consent that was published in April 2017. Two years later, I joined the paper full-time and witnessed how, as a news outlet, it continued to improve its coverage. When I worked as an editor, I tried to amplify autistic and otherwise disabled voices, which is particularly important at a newspaper that holds so much sway in politics.

  Of course, the Post is just one newspaper. But the change of language there is emblematic of how media coverage has shifted. The press now sees autistic people as definitive authorities whose experiences give them expertise on the condition. This in turn can help shape how policymakers view and understand autism in the political sphere.

  Campaign Season

  In 2016, the political culture was changing drastically. The year after NeuroTribes was published, former Secretary of State Hillary Clinton became the first presidential candidate to release a full-fledged autism-policy plan. Autism wasn’t new to Clinton, who spent a year working at the Yale Child Study Center when she was in law school. That was back when so-called refrigerator parents were blamed for autism, but after she married her husband and moved to Arkansas, Clinton said she began spending time with the mother of an autistic child and started to question the veracity of the refrigerator-parent theory.

  In 2007, when she ran against Barack Obama for the Democratic Party nomination, Clinton adopted much of the common rhetoric about “combating” autism and putting “money into finding causes and cures of diseases from cancer to autism,” even as she spoke about her various proposals to assist autistic people. This was likely reflective of the fact that the most vocal autism advocates were not autistic themselves. But her policy approach shifted drastically by 2016. By then, her campaign plan read like a wish list of issues that self-advocates were fighting for, such as a nationwide survey of autistic adults, banning chemical and physical restraints on autistic kids in schools, and promoting an Autism Works Initiative.

  This shift in priorities is largely thanks to organizations like the Autistic Self Advocacy Network and the work of people like Julia Bascom, the organization’s current executive director. She explained to me that she does advocacy work in a way that differs from others.

  “There is a huge physical and cognitive cost for the amount of time that I spend using words,” she said. Prior to holding this job, Bascom said, she spoke on average ten hours a week, but now she speaks about sixty hours. “My job has a lot of things and a lot of parts to it,” she said. “What’s important for people to know is that I can do those things not because my disability doesn’t impact it but because I have this elaborate scaffold of supports that is invisible to people who aren’t involved in it. That makes it possible.”

  Bascom, Ari Ne’eman, and the rest of the staff at ASAN, as well as many other autistic self-advocates, have worked for years to ensure that autistic people are not just included in the policymaking that determines their fate but at the center of it.

  All of this set the stage for the role autistic advocates would play in the 2020 presidential election, particularly in the 2020 Democratic primary. Disability rights advocates gained an incredible amount of political capital among Democrats in the first year of the Trump administration after they vigorously opposed the repeal of the Affordable Care Act, Obama’s signature achievement, as well as deep cuts to Medicaid. (During one of our interviews, I noticed a sign in Bascom’s office from those protests that said PLEASE SAVE OUR HEALTH CARE SO WE CAN STOP MAKING PHONE CALLS. )

  Many Democratic candidates consulted autistic self-advocates like Ne’eman and Bascom along with other disability rights advocates during their campaigns. Bascom said she was consulted by candidates ranging from mainstream Democrats, like Senator Cory Booker and Mayor Pete Buttigieg, to progressives, like former San Antonio mayor Julián Castro, Senator Elizabeth Warren, and self-described democratic socialist Senator Bernie Sanders.

  This level of inclusion was a culmination of years of work by autistic people to be accepted as
legitimate by the larger disability rights movement. In the early years of ASAN, Ne’eman said the organization focused on ending restraint and seclusion on students, not only because it was an important issue for autistic people but because it established ASAN as an advocacy organization that could represent the needs of autistic people in political discourse.

  “Maybe two things that I consider to be the greatest achievements I had over my time running ASAN—the first would be building the political, financial, and nonprofit infrastructure to take our community into the mainstream instead of the fringe,” he said. “And then the second would be wedding and intertwining autism into the disability rights movement.”

  I’ve covered politics long enough to know most campaign platforms don’t mean candidates can actually implement them; many require legislative action or working with opposing parties or even factions within the same party. Rather, they are aspirational.

  “I think that people need to remember that primaries are about articulating a vision and setting the bar as high as possible and getting people to compete with each other,” Bascom said.

  But despite the combination of a competitive primary and disability rights advocates’ increased sway, the eventual Democratic nominee was former Vice President Joe Biden. Trump had won traditionally Democratic states like Wisconsin, Pennsylvania, and Michigan in 2016, and many Democrats thought Biden could win back those states.

  Biden’s presumed frontrunner status made it less necessary for him to court interest groups, since Democratic voters’ primary concern was defeating Trump, not advancing their preferred policies. Biden did not release a comprehensive disability plan during the Democratic primary beyond a webpage full of general principles on his campaign website (this despite the fact that he voted for the Americans with Disabilities Act when he was a senator in the 1990s and has spoken movingly about his own disability, his stutter). However, Bascom told me she spoke with Biden’s team during the primary. Still, Biden was criticized during the primary for ignoring disability rights activists, prompting the hashtag #AccessToJoe on Twitter. Ironically, despite Biden’s frequent invocations of his time as Barack Obama’s vice president, many of the most vocal advocates, like Ne’eman—and other disability rights advocates, like Rebecca Cokley and Maria Town—were alumni of the Obama administration.

  Biden finally released a disability policy platform in June 2020, long after his biggest opponent, Bernie Sanders, had dropped out of the race. Like many of Biden’s other policies, his plans were not as aspirational as Warren’s, Sanders’s, or Castro’s. But his approach did support phasing out subminimum-wage labor and asking the U.S. Justice Department to review guardianship laws and promote alternatives like supported decision-making. Biden also released an entirely separate platform specifically focused on people with disabilities during the coronavirus pandemic.

  But at the same time, when Biden—who has been known for making verbal gaffes that range from the benign to the outright nonsensical—was rolling out his disability plan, he said that “everybody has some form of disability,” which is patently not true. While it is true that disability affects everyone’s lives (disability rights advocates often say that it’s one of the few minority groups you can join), saying everyone has some form of disability flattens the experiences of people whose disabilities prevent them from living their lives. If everyone has a disability, then disabled people have no reason to complain.

  But once Biden won the Democratic nomination, his campaign made overtures to the disability community. In July of the campaign, he released a plan that would eliminate the waitlist for home- and community-based services through increasing money for Medicaid and supported creating a “innovation fund” to find alternatives to institutional care. For the most part, though, Biden’s campaign (somewhat understandably) focused on other topics, such as the coronavirus pandemic and protests against racial injustice. But in both cases, disabled people faced the brunt of the pandemic. NPR reported at the time that people with intellectual disabilities and autism who contracted coronavirus died at a higher rate than the rest of the population in New York and Pennsylvania.

  Biden also hired Molly Doris-Pierce, who was disability outreach coordinator for Elizabeth Warren and whose disability plan was widely praised by the disability community. Doris-Pierce worked closely with Ne’eman and Bascom when Warren crafted the plan, thus validating to the self-advocacy movement. Doris-Pierce, who has obsessive-compulsive disorder, said working with the disability community has helped her accept the way her brain is wired.

  “I didn’t want to claim that title, but through working with activists, the cycle has been incredibly helpful for me to be like, ‘Oh no, this is considered a disability,’ and it does shape the perspective about these issues,” she told me. Through her work in politics, she now identifies as disabled. “It just never occurred to me until I was an adult, naively, that there are abled people who don’t have any experience in that realm.” Doris-Pierce’s experience shows how disability rights not only liberates people who are openly disabled but also allows those who may not realize they are disabled to accept themselves and their identities and eventually try to expand accessibility to others.

  Doris-Pierce hosted a digital watch party for disabled supporters during the second night of the Democratic National Convention. Interestingly, two of the surrogates who attended the one watch party I went to were Representative Ayanna Pressley of Massachusetts, who supported Warren’s campaign and twice said “Nothing about us without us,” the slogan of the self-advocacy movement for disability rights, and Castro, who had a contentious exchange with Biden during one primary debate. But neither spoke at the main convention.

  On the other side of the aisle, the Trump campaign did little outreach to the disabled community. At an American Association of People with Disabilities summit, Trump’s daughter-in-law Lara Lea Trump did highlight that under his administration, the Food and Drug Administration banned shock therapy. Lara said it was a “true shame that it took until now to ban this cruel practice.”

  Biden’s selection of Kamala D. Harris as his vice president was particularly significant because she was the first Democratic presidential candidate to release a disability policy, one that was arguably more ambitious than Biden’s. But Harris also received criticism from the disability community toward the end of her own doomed presidential campaign when she released a mental-health reform plan that called for the repeal of the “Institutions for Mental Disease Exclusion.” The IMD exclusion prevents Medicaid from funding inpatient care at facilities with more than sixteen beds. The goal is to prevent mentally ill people or those with psychiatric disabilities from being crammed into large institutions or excluded from the community. When Harris included this in her plan, disability rights activists worried that repealing the exclusion could lead to the return to institutionalization that they had long opposed. Harris was planning on reworking her mental-health plan after the intense criticism, but she ended her campaign before it could be released.

  Despite the political climate, though, there are reasons for autistic people to be optimistic. As an article in the Atlantic that focused on Biden’s stutter read: “This evolution in treatment has been accompanied by a new movement to destigmatize the disorder, similar to the drive to view autism through a lens of ‘neuro­diversity’ rather than as a pathology.”

  Tim Alberta, a Politico reporter (and a former colleague of mine from National Journal) asked questions about disability during a December 2019 Democratic primary debate while wearing a pin that supports the Autism Alliance in Michigan, his home state. Other reporters, like Abby Abrams at Time and Maggie Astor at the New York Times, rigorously covered disability throughout the 2020 campaign. These well-regarded journalists are equipped to cover disability politics and hold those in power accountable however it changes.

  For my own part, while an editor at the Washington Post, I had the capacity and wherewithal to know whom to call whenever autism comes up i
n the news cycle. For example, during the coronavirus pandemic of 2020, I asked David M. Perry, a disabled father with an autistic son who also has Down syndrome, to write about the challenges of procuring enough of his son’s favorite foods and supplies to last during the quarantine. I wasn’t taking a side—that’s never my job as a journalist. Rather, I made sure to amplify the voices of people who are legitimate participants in America’s democratic process.

  Having disabled and autistic writers and editors means that news outlets can flag items that would normally get ignored or receive minimal coverage. In 2019, I was working a normal shift as a Saturday-evening editor at the Hill when I saw a tweet from right-wing provocateur Ryan Saavedra about Senator Kamala D. Harris. At a campaign event in New Hampshire, a man asked her about President Donald Trump and what she was going to do to “diminish the mentally retarded action of this guy.” Harris responded: “Well said.”

  “I hope @KamalaHarris enjoys losing the disability vote,” Bascom tweeted, then added, simply, “Shameful.”

  My colleague Zack Budryk, who is also autistic, happened to be working that Saturday as well, and I knew he would be up to handling this story correctly. I knew Budryk was right for this story not just because he is a good reporter but because of his lived experience. Neither Budryk nor I are advocates, and we are not partisan in our work; we are journalists, and it is our job to portray the world as it is. But being autistic and steeped in our community allows us to consider topics that might otherwise be ignored. We know whom to call, whom to consult, and who is a credible authority; it’s similar to how people from diverse backgrounds help journalists tell the stories of those communities more accurately.

  The protests for racial justice in 2020 sparked many discussions about the lack of racial diversity in newsrooms across the country, not just in terms of staffing but also in leadership (a concern I took very seriously as an assistant editor and a Latino at a highly respected newspaper). In the same respect, the swath of disability-related stories that are regularly ignored or get covered from abled-person’s point of view underscores the disabled voices in newsrooms.