The Panic Virus

by Seth Mnookin; Dan B. Miller

  Thompson reported none of this history to her viewers, nor did she tell them of Stewart’s repeated run-ins with his colleagues or his reputation for operating on the scientific fringe. When she highlighted the conclusions of a study Stewart had published, she failed to mention that it relied on data that had been collected by the Association of Parents of Vaccine-Damaged Children or that it was used in several lawsuits filed by parents seeking monetary damages for purported vaccine injuries. She also neglected to report that Stewart’s anti-vaccine manifesto had contributed to the explosion of whooping cough hospitalizations in Great Britain in the late 1970s. (Stewart questioned whether these outbreaks had ever occurred.) Thompson’s presentation of Stewart as someone who was able to offer objective commentary on the DPT vaccine would be akin to a newscaster acting as if Sarah Palin could function as an impartial evaluator of Barack Obama’s job performance.

  When asked about these problems, most of which were based on indisputable facts and not personal opinions, Thompson fell back on a tactic that had been used by the “irregular physicians” in their battles with the AMA all the way back in the 1850s: She accused her critics of trying to protect their turf. “I think much of the potshotting has come from people who have been burned,” she said. “We hit a lot of raw nerves. . . . Many doctors are miffed because they have to talk to their patients now.” She even found a way to lay blame for omissions in her reporting at the feet of those establishment critics: When asked why she had not devoted any of her broadcast to the ravages of whooping cough, she pointed a finger at the CDC, the FDA, and more than a dozen other medical institutions, all of which, she said, had failed to provide her with a single frame of usable footage of children sick with pertussis—a fact that was due to the success of the vaccine in the first place. Of course, if Thompson had truly felt an obligation to offer a different perspective, she could have gone to the U.K. and spoken with parents whose children had died of the disease. The problem with that, she said, was that despite dedicating a year’s worth of resources to the project, her station didn’t have the budget to send a reporter to London.

  Thompson and her employer’s role in the controversy they helped ignite did not end with the broadcast itself. In the days after its initial airing, WRC-TV helped organize a burgeoning anti-vaccine advocacy movement by providing callers with the phone numbers of other people who’d already contacted the station looking for information about negative reactions to childhood shots. Within two weeks, a group of parents had organized a face-to-face meeting, and those ad hoc get-togethers eventually coalesced into a group that called itself Dissatisfied Parents Together—DPT for short.

  One of these parents was Barbara Loe Fisher, a former PR professional who’d become a full-time housewife after she’d given birth to her son, Chris, four years earlier. When “Vaccine Roulette” aired, it had been more than a year since Chris had started displaying symptoms of what would eventually be diagnosed as a range of developmental disorders. Many years later, Fisher would describe the transformation of her “happy-go-lucky little boy” into one who was “listless and emotionally fragile, crying at the slightest frustration as if his heart would break.” When Chris’s behavior first started to change, Fisher said, she repeatedly pressed her pediatrician for an explanation and sought any steps she could take to transform her son into the perfect child she remembered him being.

  It wasn’t until she saw Thompson’s broadcast that the pieces fell into place. The reactions that Thompson described—convulsions, loss of affect, permanent brain damage—were, Fisher realized, identical to those experienced by her son. Suddenly, Fisher remembered in meticulous detail what had happened one day eighteen months earlier, when Chris had received the final dose of his DPT vaccine:

  When we got home, Chris seemed quieter than usual. Several hours later I walked into his bedroom to find him sitting in a rocking chair staring straight ahead as if he couldn’t see me standing in the doorway. His face was white and his lips slightly blue, and when I called out his name, his eyes rolled back in his head, his head fell to his shoulder and it was like he had suddenly fallen asleep sitting up. I tried, but could not wake him. When I picked him up, he was like a dead weight and I carried him to his bed, where he stayed without moving for more than six hours, through dinnertime, until I called my Mom, who told me to immediately try to wake him, which I finally did with great difficulty. But he didn’t know where he was, could not speak coherently and couldn’t walk. I had to carry him to the bathroom and he fell asleep again in my arms and then slept for twelve more hours.

  It’s an incredibly moving story, and one that Fisher has told to congressional panels, federal committees, and state legislatures, and at national press conferences, for more than twenty-five years. In all that time, she’s almost never been questioned about the specifics of her narrative—and there are parts that, if nothing else, certainly are confounding.16 Fisher, as she told a government vaccine safety committee in 2001, is “the daughter of a nurse, the granddaughter of a doctor, and a former writer at a teaching hospital” who viewed herself as “an especially well-educated woman when it came to science and medicine.” How was it that her only response to finding her unresponsive son displaying symptoms associated with heart attacks, strokes, and suffocation was to carry him to bed and leave him alone for six more hours? And if Chris’s reaction to his fourth DPT shot was so severe that it transformed an ebullient boy into a sluggish shell of his former self, why had he been fine after receiving the first three doses?

  Shortly after the formation of Dissatisfied Parents Together, Fisher founded the National Vaccine Information Center. Since then, she’s played an essential role in organizing a movement that has targeted the press, politicians, and the public in equal measures. The result has been a steady erosion of vaccine requirements and a steady increase in the percent of the population skeptical of vaccine efficacy. Today, every state save for Mississippi and West Virginia has religious exemption laws on the books. Eighteen states have philosophical exemption laws, which allow parents to cite nothing more than personal beliefs as a reason to limit their children’s vaccinations. In 2010, Pediatrics released a study that reported that despite all evidence to the contrary, 25 percent of parents believe that vaccines can cause developmental disorders in healthy children. “The genie is not going back in the bottle,” another leader of the anti-vaccination movement wrote in a congratulatory essay posted on one of the movement’s most popular Web sites. “The fear of vaccines is going to rise. Our community is only gaining strength.”

  16 I tried to interview Fisher several times over the course of more than a year. She explained in an e-mail that her ultimate refusal was due to an article about vaccines and the anti-vaccine movement that appeared in the November 2009 issue of Wired in which Paul Offit was quoted as saying, “She lies. Barbara Loe Fisher inflames people against me. And wrongly. I’m in this for the same reason she is. I care about kids.” In her e-mail to me, Fisher wrote, “As you know, character assassination in order to demonize and marginalize individuals or groups belonging to a minority in society is a classic form of propaganda. Historically, it has been used as a component in overt and covert political disinformation campaigns designed to neutralize individuals and groups dissenting from the majority opinion.” Then, citing the fact that Wired shares a corporate parent with Vanity Fair, where I am a contributing editor, she wrote, “I hope you understand why I cannot subject myself to another opportunity to have my position mischaracterized and my reputation further damaged by foolishly trusting again and cooperating with a journalist I don’t know, who works for Condé Nast.” In December 2009, Fisher sued Offit, Condé Nast, and the author of the Wired story for libel. The case was summarily dismissed.

  CHAPTER 6

  AUTISM’S EVOLVING IDENTITIES

  In 1943, Leo Kanner, an Austrian doctor and the author of the first English-language textbook on child psychiatry, published “Autistic Disturbances of Affective Contact.” The pa
per, which reported on Kanner’s work with eleven young boys, was the first to use the term “autism” to describe children who, in addition to being developmentally disabled, were incapable of “form[ing] the usual biologically provided affective contact with people.” (The neo-Latin word autismus had been coined in 1910 by a Swiss doctor named Eugen Bleuler as a way to depict the “morbid self-admiration” of schizophrenics who were stuck in their interior worlds. Its root is the Greek word autos, or “self.”) At the time, Kanner, who’d immigrated to the United States in 1924, was widely regarded as the world’s foremost expert on childhood emotional development. In addition to their inability to form normal human attachments, Kanner said, autistics exhibited an extreme lack of empathy and a tendency to become unnaturally absorbed in routine tasks.

  Kanner’s ultimate goal was to use his classification as a tool to develop more effective treatments—but before he could do that, he had to determine the disorder’s root causes. In the early stages of his research, Kanner looked to the families of autistic children in his search for factors that made them unique. It didn’t take long for him to identify significant ways in which the mothers of his test subjects stood apart from his perception of women in the rest of the population: They were intellectually assertive, professionally ambitious, and emotionally restrained. Perhaps, he speculated, the symptoms of children with a biological predisposition to autism were exacerbated when they were raised in environments in which they didn’t receive enough affection. Six years later, in Kanner’s second major paper on the subject, he further developed this line of thinking: The reason autistic children found such comfort in solitude was that they’d been victimized by a “genuine lack of maternal warmth,” which he likened to being “kept neatly in refrigerators which did not defrost.” Kanner’s metaphor, which conjured up images of children incubating in wombs of physically and psychologically frigid women, would remain the dominant trope through which autism would be understood for more than thirty years.

  Beginning in the late 1950s, the “refrigerator mother” theory was expanded on and promulgated by another Austrian émigré, the celebrated University of Chicago professor Bruno Bettelheim. In 1959, Bettelheim published a paper titled “Joey, a ‘Mechanical Boy,’ ” in which he described a child “devoid of all that we see as essentially human and childish, as if he did not move his arms or legs but had extensors that were shifted by gears.”

  How had Joey become a human machine? . . . A colicky baby, he was kept on a rigid four-hour feeding schedule, and was not touched unless necessary and was never cuddled or played with. The mother, preoccupied with herself, usually left Joey alone in the crib or playpen during the day. . . . Joey’s mother impressed us with a fey quality that expressed her insecurity, her detachment from the world and her low physical vitality. We were especially struck by her total indifference as she talked about Joey. This seemed much more remarkable than the actual mistakes she made in handling him.

  Bettelheim’s status as a pioneering medical doctor, his academic bona fides, and his media savvy gave his opinions even more weight than those of Kanner. Throughout the 1960s, he used increasingly vituperative language when promoting his belief that it was psychological abuse, not hardwired physiology, that caused autism. (This dichotomy is an example of the nature/nurture debate that has been a constant source of tension for students of human behavior: Are distinct aspects of our personalities the result of our innate biology or the unique circumstances of our individual lives—or some combination of the two?) Bettelheim, a Jew who escaped the Nazis in the years before World War II, went so far as to compare the households in which autistic children were raised to concentration camps and refrigerator mothers to Nazi guards. By the time his book The Empty Fortress: Infantile Autism and the Birth of the Self was published in 1967, he was widely considered the world’s foremost expert on the disease.

  From today’s perspective, Bettelheim’s theories are as simplistic as they are offensive. Even before the ethicality of Bettelheim’s research on emotionally disturbed children was called into question, his analytical and methodological errors should have been obvious to his colleagues.17 As counterintuitive as it may seem, this is precisely why his work remains so instructive: The readiness with which Bettelheim’s theories were embraced illustrates how what are thought of as indisputable, evidence-based conclusions are influenced by prevailing social and cultural currents. Post–World War II America was a place of rapidly changing gender roles. As is the case after every war, returning veterans found the transition back to society to be a difficult one. In their absence, women had worked in factories, provided for their families, even formed professional baseball leagues—all activities that were previously the exclusive domain of men. Surely, women couldn’t succeed in traditionally male roles while also fulfilling their customary responsibilities, such as raising children and supporting their husbands. An internalization of those social anxieties, coupled with a widespread acceptance of the notion that behavioral disturbances stemmed from childhood emotional traumas, simultaneously penetrated Bettelheim’s research and informed the public’s reaction to his work.

  An appreciation of the interconnectedness of scientific discourse and societal constructs not only makes clear why early hypotheses about the roots of autism were so readily accepted, it also explains why those hypotheses ring so false today. Over the last fifty years, having women in positions of power and mothers of young children in the workplace has gone from seeming abnormal to being accepted as commonplace; advances in genetics, epidemiology, and neurobiology have caused scientists to examine psychological phenomena through an increasingly mechanistic lens; and the paternalistic attitude of self-appointed authorities has come to be viewed with skepticism, if not outright hostility. The assumptions that guide what we think of as provable, when we decide something has been proven, and whom we consider capable of proving it, all change over time. This awareness—that knowledge is never absolute and notions of what we can conceive of are fluid—is the underpinning of the modern-day understanding of science.

  Throughout the first half of the twentieth century, the ways in which psychological and mental illnesses were viewed were defined almost exclusively by Sigmund Freud, Carl Jung, and their intellectual descendants. That began to change in the 1950s, as the steady rise of treatments targeting biological mechanisms—ranging from prefrontal lobotomies to psychotropic medications—began to weaken the intellectual stranglehold of these behavioral pioneers. Psychiatry began to move away from a fixation on why a patient had a given disorder (e.g., autism was the product of poor mothering) and toward diagnoses and treatments based on defined behaviors that respond to specific remedies.

  In the United States, this shift was illustrated by the 1952 release of the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM. Ever since its initial publication, the DSM has determined how medical professionals in much of the world categorize psychiatric illnesses. The implications of these classifications extend far beyond mere semantics, with tiny changes dictating what is considered diseased and what is thought of as normal. This, in turn, can have an enormous effect on the day-to-day realities of people’s lives: Insurance companies use the DSM to determine which treatments they will cover; pharmaceutical companies look to the DSM when deciding what types of drugs to develop; lawmakers refer to the DSM when making health policy; even judges and juries have pointed to DSM classifications to justify rulings and verdicts. To be sure, this process is not unidirectional: Just as minor alterations in the DSM can have far-reaching implications in the real world, shifts in societal mores can result in significant changes to the DSM. One of the best-known examples of this shift occurred in 1973, when the gay rights movement successfully pressured the APA to remove homosexuality from the “sexual deviations” that were listed in the seventh printing of the second edition of the manual, known as the DSM-II. There have also been a number of instances i
n which behavior that threatened the social order was pathologized in the DSM. Jonathan Metzl writes about one of the most astonishing of these in his book The Protest Psychosis, which details how the category of schizophrenia was expanded to include “threats to authority” in the 1960s. The result was a mushrooming of African-American men being institutionalized after receiving diagnoses of the disorder.

  The evolution of the DSM’s handling of autism is another example of the two-way interplay between science and society.18 In the manual’s first edition, the only mention of autism came under the heading of “schizophrenic reaction, childhood type,” which listed “psychotic reactions in children, manifesting primarily autism” as the disorder’s primary symptoms. In the DSM-II, which was published in 1968, the characteristics of childhood schizophrenia were expanded to include “autistic, atypical, and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity, and inadequacy in development.” It wasn’t until 1980, with the publication of the DSM-III, that “infantile autism” was listed in a distinct category. Seven years later that diagnosis was changed to “autistic disorder,” and in 1994 it was folded into the newly expanded class of “pervasive developmental disorders,” which included Asperger’s disorder, childhood disintegrative disorder, Rett disorder, and the loosely defined pervasive developmental disorder, not otherwise specified (PDD-NOS).