by Eric Garcia
Tommy Lee, the drummer for Mötley Crüe, rocked a pink faux-hawk and opened the PSA warning “as many as one in a hundred and sixty-six children are diagnosed.” He was followed by Roger Daltrey—the frontman of the Who, the first band I ever saw in concert—saying, “That’s more than sixty-eight a day.” The ad continued with Gene Simmons and Paul Stanley—replete with their kabuki makeup and Kiss regalia—saying that more people had it than “type one diabetes, childhood cancer, and cystic fibrosis combined.” Robert Plant, who looked less like the sex-symbol frontman from Led Zeppelin and more like a Lord of the Rings character, said, “No one knows where it comes from.”
The ad made teenage me wonder, What kind of terrible affliction is this? Finally, it culminated with Ronnie James Dio of Black Sabbath, the singer of the very band I aspired to emulate, saying in his deep baritone voice, “Help us put an end to autism.”
Initially, I cradled that PSA closely. I felt these musicians who dominated my airwaves and my iPod had my back. I don’t think I cared about being cured of autism then; what mattered more was that someone saw me. But now, I watch that ad and think about how corrosive it was to see Joe Perry and Steven Tyler of Aerosmith, whom I loved when I saw them live, say they wanted to wipe me out. I think about the irony of the fact that Kiss, a band that taught me that being aggressively bombastic can be a good thing, saw autism as a disease on par with cancer.
Rob Halford of the band Judas Priest was an openly gay man who adopted the regalia of studs and leather from gay bars in London that became the heavy metal “look” that so many macho metal dudes would copy. For me, he was the gateway to making a straitlaced church kid accept LGBTQ people. But while I imagine he would be deeply offended if anyone tried to “cure” him of homosexuality, there he was, advocating for a cure for what made me, well, me.
I don’t deny that those musicians wanted to do some good with that ad. The prevailing wisdom at the time, influenced by many parents’ advocacy groups, was that autism was a terrifying condition that required a full-frontal assault. Those musicians probably thought they were using their wealth and influence to help young kids. But their message was that autism is a death sentence, that it would be better if autism was eradicated. It is that spirit that makes autistic people seem like they are either objects of pity or “inspirational figures” who don’t let their condition “hold them back,” when it is often the world and its unwillingness to adapt that is much more of an impediment to them.
One of the other parts of that ad that I remember is Twisted Sister’s Dee Snider looking into the camera and saying that autism was “the fastest-growing developmental disability in the United States.” Of course, we now know that those numbers grew not because more kids were autistic but because the tools used for diagnosis were improving.
Around the same time, Republican Representative Chris Smith of New Jersey and Democratic Representative Mike Doyle of Pennsylvania cofounded the Congressional Autism Caucus. I caught Doyle campaigning for an endorsement at the same Stonewall Democrats endorsement event that Jessica Benham was at. When he made his case for their support, he mentioned cofounding the caucus. Later, Doyle told me that at the time, he noticed how passionate parents’ groups were because their children were being institutionalized or were not getting the services they needed.
“It didn’t matter whether we found out what was causing it,” he said. “They were there, and they needed help.”
NBC/Universal chairman and CEO Bob Wright and his wife, Suzanne, founded the organization Autism Speaks in 2005 after their grandson Christian was diagnosed with autism. The group’s mission statement said the nonprofit was “dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.”
The nascent nonprofit quickly gained national prominence when Congress passed the Combating Autism Act with bipartisan support. President George W. Bush, whose father had signed the Americans with Disabilities Act back in 1990, said, “I am proud to sign this bill into law and confident that it will serve as an important foundation for our Nation’s efforts to find a cure for autism.”
From the 1970s until the mid-2000s, much of the political advocacy for autism was done without the input of autistic people. The fact that autism existed on a spectrum and that autistic people could speak (either through their physical voices or via communication devices) and advocate for themselves was not widely known until the 1990s.
To understand the tension that exists today between parent advocacy and self-advocacy, one must first understand its origins. For much of the early twentieth century, medical and psychiatric experts dominated the conversation about autism. Leo Kanner conducted one of the first widely read studies about autism in 1943, but his study noted many of his subjects lacked “warm-hearted” parents. He later elaborated on this in a 1949 paper, saying that “many of the fathers remind one of the popular conception of the absent-minded professor who is so engrossed in lofty abstractions that little room is left for the trifling details of everyday living.” He also wrote that “maternal lack of genuine warmth is often conspicuous in the first visit to the clinic” and that he’d observed only one mother fully embrace her son at her first visit to his clinic.
“They were the objects of observation and experiment conducted with an eye on fractional performance rather than with genuine warmth and enjoyment,” Kanner wrote of the autistic children he studied. “They were kept neatly in refrigerators which did not defrost.”
Kanner’s words gave rise to the concept of “refrigerator parents,” and Bruno Bettelheim, who led the Orthogenic School in Chicago, further popularized the concept. Bettelheim’s book The Empty Fortress explicitly blamed parents for giving their children a condition, going as far as to say, “I state my belief that the precipitating factor in infantile autism is the parent’s wish that the child did not exist.” He called autism “a state of mind that develops in reaction to oneself in an extreme situation, entirely without hope.”
Even worse, faulty research like this “helped keep autism off the agenda,” as Claremont McKenna College political science professor John M. Pitney Jr. wrote in his book The Politics of Autism. Autism was framed as a personal concern rather than a collective one and thus didn’t require broader policy solutions. Later, Kanner would absolve parents of blame, and Bettelheim’s ideas would fall out of fashion. But the damage they did to parents who blamed themselves and their autistic children was immeasurable personally and politically, since it prevented autism from being part of the growing disability rights movement.
Thus, the early era of autism advocacy in the 1970s was meant as an act of taking back power for parents who had been blamed for their children’s autism for years. And parents made some valuable net gains. Ruth Christ Sullivan, one of the founders of the National Society for Autistic Children (NSAC, later the Autism Society of America), lobbied for the condition to be included in the Developmental Disabilities Act, which was signed by President Gerald Ford. The second part of the legislation was titled “Establishment and Protection of the Rights of Persons with Developmental Disabilities” and said explicitly that “persons with developmental disabilities have a right to appropriate treatment, services, and habilitation for such disabilities” and placed autism under the umbrella of developmental disabilities.
“Those brief 3½ years since its passage have seen the establishment of many services for our children, often for the first time, usually where none existed before,” Sullivan wrote in a 1979 article published in the Journal of Autism and Developmental Disorders.
But some of the parents who sought to recalibrate the scales would themselves tip them one way or another. Researcher Bernard Rimland, who cofounded NSAC and was a parent of an autistic son himself, helped challenge the toxic-parenting theory. But his organization Defeat Autism Now! also promoted treatments like casein-free and gluten-free diets and the use of vitamin B6 , as well as more dangerous crank theories, such as intravenous use of the
hormone secretin.
As a result of parent advocates dominating the conversation, autistic people themselves wound up missing out on much of the disability rights movement that animated the twentieth century.
“One of the most important things I can communicate to you about autism history is that, for a very long time, the autism world has trailed the broader developmental disability world by at least one, sometimes two or three, decades,” Ari Ne’eman, the cofounder of the Autistic Self Advocacy Network (ASAN), said in an interview. “And so, things that you see in the broader developmental disability [advocacy] that become unacceptable are still acceptable in the autism world.”
Ne’eman first came to prominence when he and a nascent ASAN protested ads by New York University’s Child Study Center that portrayed autism as kidnapping children and sending ominous messages saying, “We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.” Ne’eman said the ads were reminiscent of the old telethons hosted by Jerry Lewis to raise money for the Muscular Dystrophy Association. Disability rights activists had spent years protesting these telethons, which were demeaning and treated disabled people as objects of pity, and many organizations ditched the toxic idea. But autism groups continued to use that same fear-and-pity archetype to raise money.
“Similarly,” Ne’eman said, “you had a greater willingness to support institutionalization, segregation, and even what we would consider abusive treatments,” such as shock therapy, as well as bogus cures, like secretin injections and chelation therapy, which involves injecting a binding agent into the bloodstream to remove toxic chemicals.
The problem with focusing on the parents of autistic people instead of the autistic people themselves is that when these two sides clash, society tends to sympathize with parents. A 2011 survey published in the Journal of Children and Media examined coverage of autism in publications read largely by mothers (who often wind up as the primary caregivers for disabled children), such as Parenting, Working Mother, and O: The Oprah Magazine, compared to ones with mixed readership, like the Atlantic Monthly, the New York Times, Reader’s Digest, Maclean’s, Time, and Newsweek. The publications targeting mothers covered autism like it was a dire affliction. One 2006 article from Parents magazine quoted a mother who called her son’s autism diagnosis “a gun pressed against the side of my head” and said she thought “the world had just ended.” Others talked about moving “heaven and earth” for their children, with one article saying parents “have to be creative—and persistent—about getting the help they need.”
The problem with these narratives is that they paint autism as tragic, which it’s not. It’s a disability the same as any other, and while it requires work, it should not be described as the end of the world; to do so is to compare your child to the apocalypse. Furthermore, if autism is a tragedy, then some parents feel entirely justified in doing whatever it takes to “cure” their kids of this malady, including forcing them to drink bleach or putting them on bunk diets, harming or even killing their children in the process.
Sadly, extreme stories like those are all too common, yet frequently, parents who murder their autistic children are given leniency in both the eyes of the law and public opinion. In 2013, fourteen-year-old Alex Spourdalakis was drugged and stabbed repeatedly by his mother, Dorothy, and his godmother, Agatha Skrodzka. But when introducing a news segment about the murder on CBS This Morning, Gayle King said, “The case is extreme, but it shines a light on the struggles of hundreds of thousands of families coping with autism.” Similarly, Polly Tommey, who produced a documentary about Spourdalakis’s murder, said, “Dorothy was like any other autism mother, desperate to get help for her child” and that “his death didn’t need to be. It was because there wasn’t anything in place for him.” The local NBC affiliate said the two killed the boy “to end the teen’s suffering from autism.” Three years after the killing, Spourdalakis’s mother and godmother pleaded guilty to involuntary manslaughter and were released from prison days later.
While plenty of autistic people and their loved ones do face a labyrinth of obstacles, there is never justification for taking another person’s life simply out of desperation or exhaustion from fighting for services. Furthermore, there are countless parents who have children who require significant support and who do not murder their offspring, and stories like Spourdalakis’s is an insult to every one of those parents. And all this is to say nothing of how it devalues the lives of autistic people. Autistic people do not need someone to decide if their lives are worth living; they need loving parents who will not inflict harm on them no matter what.
A parent-centered focus on autism has also allowed parents to justify subjecting their children to other heinous treatment. The Judge Rotenberg Educational Center (JRC) in Massachusetts is a day and residential school for students with developmental disabilities that used graduated electronic decelerator (GED) to administer shocks when students exhibit harmful behavior. In a report on the subject, Juan Méndez, special rapporteur on torture for the United Nations, wrote that the shocks violated the UN’s conventions against torture. Matthew Israel, the center’s founder, was forced to resign in 2011 and agreed to five years of probation. In 2020, the Food and Drug Administration banned the shocks, saying they “present an unreasonable and substantial risk of illness or injury to the public.”
But for years, the JRC’s biggest defenders were parents. A 2008 profile of the JRC in Boston magazine concluded by featuring a hearing with a parent named Eddie Sanchez, the father of a son who received treatment at the center. At one point, Eddie took his son Brandon off the machine, which led to Brandon slapping himself and twisting his neck hard against his shoulder. Eddie Sanchez said at the hearing, “If it were not for this program, my son would be dead. And if it weren’t for that, I would blow his freakin’ brains out. That’s what I would do for my son.”
This comment is disturbing. It implies that if Brandon were not undergoing a draconian treatment that uses shocks, Eddie would murder his own son, manipulatively saying he would do it for him, as if to take him out of his misery. But instead of saying so, the Boston magazine reporter concluded the article with “This is love. It is so strong that the parents of the Judge Rotenberg Center would rather shock their children than see them hurt any more, so strong that they would rather kill their own than have them face life without the machine.”
None of this is to say that political autism advocacy does or should pit parents against autistic self-advocates. Many times, the two groups are important allies for effecting change. As you will see in this book, parents often use their advantages as neurotypical people to better advocate for their kids’ rights. The main distinction is that parents must recognize when their own desires come at the expense of autistic people’s well-being.
The Anti-Vaccine Movement Infects Politics
One of the other bogus theories Bernard Rimland praised was that of British physician Andrew Wakefield, who in 1998 published a study in the Lancet that implied a connection between autism and the measles-mumps-rubella vaccine. It was later revealed that Wakefield had not disclosed that he been paid by attorneys representing parents of children who had filed lawsuits against companies that made vaccines. Wakefield lost his medical license in 2010 and the Lancet retracted the study, but the damage was already done. In 2000, after the publication of his initial study, Wakefield found an audience in the United States and in the halls of Congress when he testified before the House Government Reform and Oversight Committee. Before then, the committee’s chairman, Republican Dan Burton, was perhaps best known for espousing another conspiracy theory: that President Bill Clinton’s aide Vincent Foster did not kill himself but was murdered. Burton went so far as to reenact the “murder” by shooting a cantaloupe as a stand-in for Foster’s head to prove his case (some reports stated that Burton had shot a watermelon, rather than a cantaloupe, which earned him the nickname of “Watermelon Dan”).
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In the 2000 hearing regarding vaccines, Burton spoke anecdotally about his granddaughter, who he said nearly died after she received the hepatitis B shot, and his grandson, who he said became autistic after he was vaccinated. Burton said that there was emerging evidence about a connection between vaccinations and autism in “some children” and that “we can’t close our eyes to it.”
Even during that early hearing, Wakefield’s theory was criticized. Representative Henry Waxman of California, the ranking Democrat on the committee, warned that this could cause a dangerous drop in immunization rates. “I think those hearings did a lot of disservice because, to a large number of people, that underscored the false notion that their children could be protected from autism simply by not getting vaccinated for diseases that could be prevented,” Waxman told me in 2019, citing the measles outbreaks that had happened that year. “It could have been completely prevented had people not been afraid to vaccinate their kids.”
It wasn’t all just Republicans either. In an August 2009 hearing on autism, Democratic Senator Tom Harkin of Iowa grilled Thomas Insel, then the director of the National Institute of Mental Health, about vaccines and their link to autism. In response, Insel said, “There is no evidence at this point of any association between vaccines, the number of vaccines, the kind of vaccines or the increase and vulnerability to autism.”