Autism, off-label chelation & the antivax movement: The beginning
On a cold and rainy night in January 2020 a group of autistic activists stood together protesting the screening of VAXXED 2, an anti-vaccine film, at the Kingsway Theatre. I was there, holding a sign that read “Memo to Antivaxxers: Pandemics are Real. We Don’t Want Them”.
Looking back, my sign might seem eerily prescient. But then again, we all knew something was coming, right? We just didn’t quite know what it would look like.
Autistic people have a very specific relationship with the antivax movement because we’ve been hurt by it. The VAXXED films and the antivax movement conflated being vaccinated against measles with becoming autistic, with the unavoidable gut-punch that some believe it’s better to contract measles than to be autistic. To our community, the danger of antivax wasn’t just about unvaccinated kids getting measles: it was about the demonization of autistic people as toxic and an epidemic. To protest antivaxxers, as an autistic person, has always been a statement of pride.
I won’t forget an image of one protest sign a friend sent me from Halifax, that read: “Get lost, anti-vaxxers. My best friend has autism and is perfect.” Another protestor held up sign that was filled, corner-to-corner with neatly printed facts and citations. (Seriously, no activist can print up a fact-filled protest sign like an autistic activist can!)
But that night in the rain, we also knew our tidy facts and citations were going up against a sea of emotion. This was a battle of facts versus stories, with a narrative that spanned generations. Parents, struggling to understand and connect with their children, had never been given the tools they needed. They wanted an answer. What if the answer was so simple, a “toxic insult” from a measles inoculation? What if they could remove the vaccine from their child and remove the autism at the same time?
The myth that vaccines cause autism builds on vaccine fears that have existed since the earliest vaccines; they seem more real within the context of a crisis of authority and the corporatization of medicine. Like a lot of pseudoscience, the lie drew its strength from an adjacent reality: We do live in a toxic world. Pharmaceutical companies are ripping Americans off—and sometimes policymakers are in on the grift. Those in power aren’t doing enough to fix the problem.
But the truth is, autistic people are neither a toxic by-product nor the symbol of a broken world--and the answer to any family’s problems don’t really come in a bottle from the autism snake oil show. While it was important for us to have a presence at the screening, we also knew we can’t solve the problem of vaccine myths through protest alone. We need to take on the broader social forces responsibility for the autism-vaccine myth, so that it doesn’t have a marketplace to begin with.
Rimland, Wakefield and the vaccine-autism myth
There is a pre-history to the Wakefield myth. As Paul Offit, author of Autism’s False Prophets, has pointed out, the notion that the measles-mumps and rubella (MMR) vaccine caused autism was born decades before it was popularized by Andrew Wakefield, a British pathologist and an expert witness who in 1998 co-authored a since-retracted paper in the Lancet, claiming a link between the MMR vaccine and “developmental regression,” in young children.[1]
In the late 20th century, the term “mercury” struck fear in the hearts of many, because news media had been covering issues of deaths and toxicity from downstream mercury poisoning by corporate polluters. Bernard Rimland--a research psychologist and colleague of Ole Ivor Lovaas, who popularized ABA--built upon these fears to posit that autism was caused by mercury in the MMR vaccine. In addition to supporting ABA, Rimland, who co-founded the Autism Society of America and the Autism Research Institute, promoted several disproven theories about how to cure autism, all based on the myth of vaccine toxicity.
One reason Rimland was so popular with parents was his 1964 book Infantile Autism countered the post-war belief, popularized in part by Bruno Bettelheim, that autism was caused by distant parents who did not attach with their child. Rimland challenged that, stating autism wasn’t caused by parents lack of nurturing but rather by unnatural factors, It was, in his view, "triggered by environmental assaults," specifically pollution, antibiotics and vaccines. In Rimland’s words, autism could be "be treated—or at least ameliorated—with [a combination of] biomedical and behavioral therapies."
With connections in the emerging marketplace of biomedical “treatments” for autism like secretin and chelation, Rimland positioned himself as a kind of expert to parents seeking help beyond the Lovaasian behaviourism that had been failing their families.[2] One of his most popular books about the topic was in 1998, entitled Biological Treatments for Autism and PDD (with William Shaw, Lisa Lewis, Bruce Semon) and the last book he wrote on the subject was Recovering Autistic Children in 2006.
Rimland’s Autism Research Institute (ARI) promoted the de-bunked Defeat Autism Now (DAN!) program. DAN! advised parents to restrict their children’s diets by removing wheat and casein (a milk product) and to use chelation, a process for removing minerals from the blood, with the erroneous belief that chelation could treat autism by removing metals supposedly left behind from vaccinations.
The ARI also supported the work of Andrew Wakefield, the British pathologist who, in the early years following the 1998 publication of his infamous paper, spoke at the Institute’s conferences about his flawed study, published in the Lancet, claiming a link between autism and the MMR vaccine.
It’s easy to see why Rimland embraced Wakefield’s thesis, but it may seem surprising that a widely-respected medical journal like the Lancet published Wakefield’s paper, which had significant flaws in the research and was complicated by the pathologist’s own conflicts of interests as an expert witness for litigants in class action lawsuits. As investigative journalist Brian Deer’s explosive report in the Sunday Times (London) revealed, Wakefield’s study had been commissioned to support a lawsuit against vaccine companies, in which Wakefield was an expert witness.
“Claiming an undisclosed £150 (€180, $230) an hour through a Norfolk solicitor named Richard Barr, [Wakefield] had been confidentially put on the payroll two years before the paper was published, eventually grossing him £435 643, plus expenses,” reported Deer. Deer also revealed that Wakefield had altered crucial facts about the patients’ medical histories.
What social forces allowed Wakefield’s paper become so popular? Health and technology writer Steve Silberman, in a 2015 TED Talk identified a “perfect storm” for Wakefield’s paper to take hold in the public imagination. First, the diagnostic criteria of the American Psychiatric Association’s Diagnostic & Statistical Manual (DSM) had been broadened in 1994.[3] Two companies had come to dominate the lucrative field of licensed autism assessments, making assessment simpler, albeit more costly.[4] These changes gave the illusion of an explosion (or epidemic) of autism itself. Then, as Silberman points out, the term autism had entered the popular lexicon as millions of viewers worldwide watched the Oscar-winning film Rain Man.
“Then Andrew Wakefield came along,” says Silberman, “to blame the spike in diagnoses on vaccines.”
Many parents believed Wakefield “because he was a doctor and a researcher,” Offit, a vaccine advocate and co-inventor of the Rotavirus vaccine, told me. “Wakefield was attractive and charismatic and passionate and a believer,” all characteristics that attracted parents who were looking for an alternative to Bettelheim and Lovaas’s narrative of autism.
Some parents felt so passionately that they pressed the government for answers on the vaccine question through meetings and protests. Offit, who was a voting member on the U.S. Centres for Disease Control’s Advisory Committee for Immunization Practices at the time, recalled seeing parents at protests with their autistic children, whom they’d dressed in T-shirts that read “Damaged by Mercury.” The idea that autism was a kind of contamination had taken hold, much to the detriment of the children themselves.
“By making autism a story of damage, that stigmatized those children,” Offit told me.
The US government hosted hearings on Wakefield’s theory, with efforts led by Representative Dan Burton, who believed his grandson may have become autistic because of vaccines. In 2000, Representative Burton even called for testimony from Wakefield. Several cases were brought before the US Court of Federal Claims, sometimes referred to as “the vaccine court.” As Biss has pointed out, there was a relatively low burden of proof around vaccine cases in the US Court of Federal Claims. As one Special Master of the court put it, the court used the gauge of “more probably than not…fifty percent plus a feather.” But the evidence in all three of the test cases was found to be below that threshold and the cases were dismissed (Biss, 140).
Three years after Wakefield’s fraudulent paper was published, Medical Hypotheses, a white-paper style journal that published non-peer-reviewed papers, printed a paper by Bernard and colleagues, asserting that autism was caused by mercury poisoning. In “Autism: A Novel Form of Mercury Poisoning”, the team claimed that autism rates were rising because mercury was introduced to children through a preservative in some vaccines (thimerosal), which is used as a bactericide to prevent contamination during injection.[5] They hypothesised while not every child exposed to thimerosal would become autistic, that some children were genetically predisposed to becoming autistic after being exposed to the chemical. (This idea created an explanation for the question of why so many children did not become autistic after receiving the MMR.)
The biggest problem with the MMR/autism hypothesis was, of course, that it was wrong. In “Vaccines and Autism: A Tale of Shifting Hypotheses,” Offit and Jeffrey Gerber observed that decades of “both epidemiological and biological studies fail to support” a link between autism and the MMR jab. These studies were “performed to address parental fears” created by the Wakefield paper, they wrote.
“Twenty epidemiologic studies have shown that neither thimerosal nor MMR vaccine causes autism. These studies have been performed in several countries by many different investigators who have employed a multitude of epidemiologic and statistical methods.
“The large size of the studied populations has afforded a level of statistical power sufficient to detect even rare associations. These studies, in concert with the biological implausibility that vaccines overwhelm a child’s immune system, have effectively dismissed the notion that vaccines cause autism. Further studies on the cause or causes of autism should focus on more-promising leads.”
Powers of persuasion
But how did we get to the point where twenty studies were undertaken, instead of two or three? How did the messaging about autism and vaccines travel so far, so fast, and to the point where it persists even in the face of this evidence? And how did it take so many years—13—for the Lancet to retract the paper?
When in 2011, the British Medical Journal reported on Deer’s expose, it also noted that “key players failed to investigate thoroughly in the public interest” when Deer’s reports came out (quoted in Hotez, 58). These and other revelations led to Wakefield’s medical license being revoked by the General Medical Council of Britain. But the damage was already done. Wakefield’s work had been shared by millions in the newly-evolving social media landscape of 1998. Wakefield’s paper had set into motion a flurry of vaccine-autism research, with every paper, even those disproving the connection, fueling the hype around the very idea. As pediatrician Peter Hotez wrote:
Today PubMed lists more than 700 papers using the words ‘vaccine and autism’ as subject headings, with all but one of them appearing after the publication of the Wakefield… paper in 1998.
Parents sought answers from the major organizational spokesman for autism in the US, Autism Speaks. Unfortunately, until 2016, the organization itself was promoting anti-vaccine views.
Read Part 2: Autism Speaks, media hype and measles
[1] For a look further back into the antivaccine movement, I recommend Eula Biss’s book On Immunity, which discusses the dawn of vaccines, which were pioneered in part by agrarian women (p. 67), and the resistance to them by religious leaders. According to an Anglican Bishop’s sermon in 1882, vaccination was “an abominable mixture of corruption…that in after life may foam upon the spirit, and develop hell within and overwhelm the soul” (quoted in Biss, p. 13). As Peter Hotez documents in his book Vaccines Did Not Cause Rachel’s Autism, antivaccine views emerged in America as quickly as the first iterations of vaccines, with protests against early forms of vaccines in the early colonies (Hotez, p. 54).
[2] Rimland advised on the movie Rain Man, in exchange for a $75,000 donation to the Autism Research Institute (ARI), which focused on promoting biomedical treatments. Unfortunately for Rimland, the film sent the cheque to the Autism Society of America, which Rimland had withdrawn from, and he was unsuccessful in recovering the money for ARI.
[3] The new definition encompassed Aspergers; “classical” autism; child disintegrative disorder; and pervasive developmental disorder not otherwise specified (PDD-NOS), a catchall diagnosis which many autistics had been diagnosed with in the 1980s.
[4] See Alicia Broderick’s book The Autism Industrial Complex.
[5] Hotez notes thimerosal has also been used in tattoo needles and that it had been used for more than half a century in vaccines and was especially important in keeping needles safe in resource-poor settings (60-1).