It’s unfair to view the first 39 chapters of In a Different Key: The Story of Autism by John Donvan and Caren Zucker as culminating in Chapter 40, the one titled “The Vaccine Scare,” but it’s also irresistible. No doubt the authors, veteran TV journalists who report on autism for ABC, view the raging battle over whether childhood immunization causes autism as a unfortunate sidetrack in the saga of this complex and mysterious condition. In a Different Key is nothing if not judicious and fair-minded in its approach to a field harried by controversies and enmities from the very start. Nevertheless, the vaccine scare captures all of the drama of autism’s story in a single, vivid package: the tension between beliefs in environmental and genetic origins, the flourishing of parent activism, the wayward influence of the media, and above all the untrustworthiness of established experts.
In a Different Key begins and ends with one man: Donald Triplett, the first person diagnosed with autism by Leo Kanner, an American child psychiatrist. It was Kanner who, in the 1940s, identified autism as a condition distinct from both “mental retardation” and schizophrenia, with which it had long been confused. Triplett, the scion of a leading family in a small Mississippi town, could speak, but what he said made little sense to his parents. (He would endlessly repeat the words chrysanthemum, business, and trumpet vine for no discernible reason.) He mostly ignored the people around him—unless he was throwing violent tantrums when aspects of his environment or routine were changed. His mother, Mary, worried that Donald’s habit of running out into the street would, during some brief moment when her attention lapsed, get him killed. Every doctor his parents consulted insisted that the boy was hopelessly insane and should be institutionalized so that the Triplett family could get on with their lives. Mary in particular resisted this dictate, although the Tripletts did briefly place their son in a facility called the Preventorium before thinking better of it and seeking out Kanner.
In a Different Key closes with a heartening contemporary account of Donald Triplett’s old age in his hometown of Forest, Mississippi. He is a college graduate and beloved local character, a retired bank employee who plays golf as often as possible and has traveled to 28 American states as well as to Germany, Tunisia, Hungary, Dubai, and Colombia. Although he never married nor showed any desire to do so, in his 70s he learned to flirt, which for Triplett mostly took the form of shooting rubber bands at his favorite middle-aged female bank staffers during church. At 79, he became an avid texter.
Triplett enjoyed this rich life instead of spending decades locked up in his own head behind the walls of a place like the Preventorium because his parents refused to docilely follow the recommendations of most experts, and because, as the authors write, he was “accepted, even embraced by the community,” with “a network of people watching out for him, and the chance to live independently, in a home of his own.” This arc mirrors the larger narrative of In a Different Key: For Donvan and Zucker, the story of autism is the story of the heroic determination of parents and the eventual education of the society around them. They tell it as a series of short profiles, focusing, in classic TV news-magazine style, on plucky heroes beating the odds, and ending many a chapter with the sort of teaser (“The results were shocking, and they made him famous. They also made him a new, and lifelong, enemy.”) tooled to hook a viewer through a commercial break. While neither as literary nor as searching as, say, Andrew Solomon’s Far From the Tree, In a Different Key is grounded and sensible, which in the contentious world of autism activism constitutes a kind of grace.
Of course Donvan and Zucker certainly don’t endorse the scientifically unfounded belief that vaccines cause autism. But by the time you get to their 40th chapter, it has become clear why so many autism parents seized upon this conspiracy theory and clung to it so fiercely. The history of autism is not one in which expert opinion has covered itself in glory. Almost as soon as the condition was identified, psychiatry produced an explanation for it that was even more blithely indifferent to the need for proof than the anti-vaxxers have been: “Refrigerator mothers,” the medical establishment insisted—“mothers not loving their children enough”—are what turn children autistic. The main proponent of this theory, and the great villain of autism activism’s early years, was the sketchily credentialed Bruno Bettelheim, whose claim to the title of “doctor” resided in a degree in art history but who somehow managed to persuade the profession and the media that he was the foremost child psychologist in the land.
Autism parents, on top of coping with sometimes devastatingly disabled children—mute, seizing, self-harming, violent—were typically informed that this nightmare was all their own fault. The treatments recommended by Bettelheim and his followers ranged from ineffective (therapy to fix the mothers) to what we now realize is exactly the wrong approach: placing autistic kids in an unstructured and overstimulating environment to make up for the alleged deprivation and rigidity of their families of origin. All of this, cause and treatment, was decreed to parents with the force of categorical authority. It was largely autism parents, some of them medical professionals themselves, who in the course of the 1950s and 1960s would force the experts to change their minds. (Although Bettelheim fought hard against organic theories of autism’s origins to the bitter end.)
Even then, competing treatments and programs emerged, from applied behavior analysis (ABA), a system of rewards and punishments devised by UCLA psychologist O. Ivar Lovaas, to TEACCH, a highly structured one-on-one method for educators of autistic kids, that was the work of Eric Schopler of the University of North Carolina, an expert especially beloved by parents. Lovaas and Schopler, defending their turf, feuded endlessly, and various programs went in and out of favor depending on the latest autism-mom memoir or sensational media story. (News magazines were a major culprit in spreading the “refrigerator mother” gospel and such discredited techniques as facilitated communication, along with whatever new miracle cure struck their fancy.) Respected innovators, organizers, and activists embraced quack alternative therapies like megavitamin doses, special diets, and something called “chelation,” “in which an individual is dosed with drugs that remove accumulated heavy metals from the body.” Meanwhile, none of them could agree on what autism really was. “The definition of autism has always been malleable,” Donvan and Zucker write: “determined by consensus, or by whoever among the jockeying experts was most persuasive at any given moment.”
The latest redefinition, though, comes from autistic people themselves, most often individuals who were once diagnosed as having Asperger Syndrome. (Asperger Syndrome was eliminated from the fifth and most recent edition of the Diagnostic and Statistical Manual of Mental Disorders. It is now considered by the American Psychiatric Association to be a disorder on the autism spectrum.) Celebrating what Donvan and Zucker call “a new philosophy”—neurodiversity—they claim that autism is not a disease to be cured but a genetically rooted identity with its own distinctive qualities to be respected and celebrated.
Against this backdrop of sham expertise, rebellion, overthrow, ongoing dispute, and new dispensations, it becomes easier to see why autism parents might be so receptive to the notion that vaccines were responsible for a “spike” in autism rates in the 1990s and 2000s—a spike which, the authors maintain, is itself nearly impossible to verify. Advanced by British surgeon Andrew Wakefield on the basis of research later proved fraudulent (Wakefield was stripped of his doctor’s license by the U.K. General Medical Council), the hypothesis must have at first appeared as plausible as any other idea being kicked around the autism sphere, and more credible than many. It was also a false claim that fell on ground rendered fertile by regular applications of bullshit from the medical establishment that later strove to refute it. Autism has created a community of civilians accustomed to being bluffed, blamed, lied to, and maligned by experts, only to be vindicated later. The persisting anti-vaxxers are dangerous, misguided and infuriating, but theirs is the same tenacity that forced the scientific community to revise its once-bogus conceptions of autism in the first place. It’s that tenacity that prevented thousands of people like Donald Triplett from leading miserable, wasted lives.
See all the pieces in the Slate Book Review.