Autism reporting and mother warriors

The IOM committee took on the feared link between MMR vaccine and autism as its first order of business, convening a meeting in March 2001 and releasing its conclusions a month later. Looking closely at the existing research, the scientists on the panel didn’t find much to implicate the MMR vaccine, but they did find much to exonerate it. To begin with, the MMR vaccine was licensed long before prevalence of autism spectrum disorders began to climb. Eight different epidemiological studies showed no association between MMR vaccination and autism. These studies didn’t definitively disprove a causal relationship, but at the same time, the single study suggesting a link between vaccines and autism—Wakefield’s study—failed to prove a causal relationship. Epidemiological evidence aside, there was also no good biological model to explain how MMR vaccines could contribute to autism, in either lab animals or humans. The likelihood of a causal relationship, the committee concluded, seemed remote.

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In 2004 the IOM committee revisited the connection between vaccines and autism, in order to take into account the most recent research. This time, they reported that they had found no support for a causal relationship between the two. Media reports had adopted a reassuring tone when the IOM released its 2001 report: “Parents worried about the potential links between one of the most common [vaccines] and autism can rest easier tonight,” said network news anchor Tom Brokaw. But the tone of media reports on the occasion of the IOM’s 2004 findings reflected a noteworthy shift. Some reports were defensive. On "60 Minutes," CDC immunization adviser and pediatric infectious disease specialist Paul Offit not only disputed the vaccine-autism link; he emphasized that vaccines were “without question, the safest, best-tested thing we put into our bodies. . . . [T]hey have a better safety record than vitamins, a better safety record than cough-and-cold preparations, a better safety record than antibiotics.” Still other reports suggested that scientific assurances were now beside the point. While scientists say it’s “clear” that vaccines don’t cause autism, said NBC news reporter Robert Bazell, “for some parents, the doubts will always linger.” Scientific conclusions, reassuring in 2001, were now no salve for parental fears. The vaccine-autism story, clearly, would not be put to rest. In fact, it only became more prevalent as the decade progressed. U.S. newspapers mentioned the link four hundred times in 2001 and more than three thousand times in 2009. And there were five times the number of evening news stories on the link in 2010 than there had been in 2001.

A number of events helped keep the story in the news. Studies large and small continued to investigate the relationship between vaccines and autism, and a few endorsed the plausibility of a link. Wakefield and his study became news fodder as various conflicts of interest were uncovered and his coauthors withdrew their support for the study; soon after, he was found guilty of misconduct, stripped of his medical license, saw his study retracted from the Lancet, and made a new home for himself among supporters in Austin, Texas. The continuing spread of autism did its part, as well. In 2005, autism prevalence rose to 1 in 166. children. A year later, it rose again, to 1 in 110; two more years later, it climbed further still, to an unfathomable rate of 1 in 88.

All the while, parents continued to suspect vaccines. In part, this was likely due to the fact that the media didn’t let go of the story; scholars have shown that public concern about a risk increases as news coverage of the risk increases—no matter how small, or unproven, that risk may be. Moreover, as vaccine worries were being amplified in the news, the rise of the Internet created yet another forum for parents’ suspicions to circulate and gain momentum. Americans in the early 2000s were flocking to the Internet for all sorts of reasons, including the quest for health and medical information. Physicians and health experts lamented that patients’ web research was changing the traditional office visit, and not for the better. But for the parents of autistic children, the online world was a limitless source of information that empowered them to understand and manage their children’s needs. A couple in Massachusetts said they spent five hours a day researching autism tips online. A California mom connected with other parents of autistic children online and learned about their successes and failures. Still others went online to diagnose their own children: “[We] put [the kids] to bed and then got on the Web to do the research,” said a mother in Illinois. “By the end of the night, we knew [our son] Weston had autism.”

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The web also gave such parents plenty of reasons to worry about vaccines. In the late 1990s, fledgling autism sites, such as Unlocking Autism and the Autism Autoimmunity Project, noted that vaccines’ effects on the immune system could lead to “profound neurological damage,” including autism—a connection Andrew Wakefield had “discovered.” As time progressed, autism sites not only summed up the evidence supporting a link between vaccines and autism; they also gave parents instructions on how to reduce the risk of vaccine harm. Avoid vaccines with thimerosal, they instructed, and make sure children weren’t deficient in vitamin A. Give kids a dose of vitamin C before and after getting vaccinated, they advised, space out vaccines so children didn’t receive them all in one day, and opt for separate shots against measles, mumps, and rubella in place of the combined MMR vaccine.

Information about the connections between vaccines and autism multiplied and spread like wildfire on the Internet—just as all information did. At the end of the decade, the CEO of Google estimated that humans were creating as much information in two days as they had since the appearance of Homo sapiens through 2003. The abundance of information online—and the countless hours that parents of autistic children spent combing through it all—led autism advocate (and model, television personality, and author) Jenny McCarthy to joke that she “should have a doctorate in Google research.” McCarthy began writing popular books about pregnancy and motherhood while pregnant with her son Evan, born in 2002; when Evan was diagnosed with autism two years later, the focus of her work changed. Her 2007 best seller, "Louder than Words," detailed the trials of seeking treatment for Evan: the frustrations of dealing with the health care system, the doctors who belittled her concerns and dismissed her observations, the friends who couldn’t sympathize, even the spouse who pulled away. Only the Internet offered answers and support twenty-four hours a day, seven days a week. Online and through other mothers, McCarthy said she discovered the treatments, therapy, and dietary changes that helped pull her son out of his autistic world.

For parents like McCarthy, the Internet was an invaluable source of community; it was also a powerful tool for creating and disseminating “experiential knowledge,” the form of knowledge production cultivated by the women’s health movement three decades before. In the late seventies, the feminist authors of "Ourselves and Our Children" had lamented that modern parents were “separated from the accumulated wisdom of other parents,” a fact that “deepens our dependence on experts”; this was precisely the problem their book and others like it were designed to address. Three decades later, the Internet provided access to a collective wisdom that was a health feminist ideal, in many ways. Science and medicine had few answers or solutions for the parents of autistic children, but in one another they found abundant expertise, shared across cultures and time zones. Each valuable piece of advice was profoundly treasured, simultaneously deepening the sense that shared lay wisdom was invaluable—and expert wisdom flawed. It was a sentiment McCarthy expressed repeatedly, as when another mother told her about treatment regimens that could free Evan from autism: “Why didn’t they tell me all this at the doctors’ office?” she bemoaned.

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McCarthy and parents like her may have been empowered by the experiential knowledge they shared, but in encounters with health care experts they still found themselves dismissed. “Sometimes mothers instinctively know what works and what doesn’t, but the doctor wasn’t interested in hearing anything I had to say,” noted McCarthy. “It’s amazing how easily medical staff ignores crying, yelling mothers.” McCarthy wasn’t alone in feeling this way. She recounted being thanked by thousands of parents who felt abandoned and belittled in pursuit of treatment for their children; she dedicated her next book, "Mother Warriors," to them. "Mother Warriors" was dedicated to all parent “warriors” fighting on behalf of their autistic children, but here and elsewhere, mothers were, once again, the primary caretakers of children and the ones uniquely frustrated by health care professionals who disparaged their expertise. “I would just say to the pediatricians, listen to [mothers] sometimes and give us a little bit more respect,” said Holly Robinson Peete, actress, autism advocate, and mother of an autistic son. “Our gut is really dead on.” Peete made her plea in an appearance on "Oprah." Across the media—in particular in media targeting women—the fight for answers to autism was portrayed as a mother’s fight, and a fight that only mothers could truly understand.

Media representations of the autism epidemic, in short, pitted mothers against experts and institutions that didn’t listen to them and showed them little respect. Not surprisingly, a similar representation appeared in media coverage of the autism-vaccine link. McCarthy’s own autism advocacy quickly turned into a vaccine-safety crusade, when she concluded that Evan was born with an immune deficiency that was aggravated by vaccines and contributed to his autism. “I am not a doctor, and I am not trying to tell you how to treat your child,” she wrote. “But . . . I feel it’s good to be aware of the dialogue surrounding a possible link between vaccines and autism.” On "Larry King Live," McCarthy appeared as the sole woman and vaccine critic in a panel discussion on autism. She argued with an all-male panel of health experts over vaccine-safety testing, the number of shots, and pharmaceutical companies’ undue influence. Gendered contestations of vaccine risks weren’t limited to late-night cable news. On a PBS "Frontline "episode titled “The Vaccine War,” groups of mothers described their vaccine hesitations to a male reporter. Vaccine advocates in the film weren’t all male, but vaccine fears, it was clear, belonged to a domestic, feminized sphere while rationality and vaccine confidence resided in the masculinized professional domain. Throughout the 2000s, McCarthy kept asking experts to “listen to what the moms are saying”—but the message across the mainstream media was that while mothers were permitted to speak, if they said anything that cast doubt on vaccines, then what they were saying was simply wrong. The vaccine debate had become a gender war—and that was good for ratings.

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Ratings and risk

McCarthy aired her views in numerous high-profile media appearances, including interviews with Oprah Winfrey, Diane Sawyer, Ellen De- Generes, and the hosts of "The View." Three years after the IOM had refuted the claim that vaccines caused autism, McCarthy’s celebrity made her take on the matter newsworthy and helped keep the vaccine-autism story alive. Her cause was much broader than the contested link between vaccines and autism, but her media appearances typically served to forge that very link. When, for instance, she appeared on "Larry King Live" in 2008 and again in 2009, she debated pediatricians and health experts on the subject of childhood vaccines, even though the occasion for her appearance was World Autism Day, both times.

The dialogue on "Larry King" partly concerned whether vaccines “contributed” to autism, but it was also about much more than that. The invited health experts denied that vaccines caused autism and stressed the ever-present dangers of the diseases they prevented, including polio, measles, diphtheria, and whooping cough. McCarthy railed against corrupt drug companies and complicit doctors, arguing that too many unsafe vaccines were being forced on children in the name of profit, causing new epidemics in misguided attempts to control overblown ones. The heated and testy conversations on occasion devolved into shouting matches. Debates, of course, are newsworthy; harmonious agreement is not. And newsrooms were, arguably, more in need of debates than ever as the 2000s progressed. The advent of cable, the Internet, and multimedia conglomerates had completely reshaped the news media. Ownership of media outlets had become increasingly concentrated, but at the same time audiences had fragmented, dispersing to hundreds of cable and online sources of news and information. News outlets, as a result, were “losing audience” and under tremendous pressure to keep viewers and readers. It was a “seller’s market for information,” concluded one report on the changing state of the media.

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The debate over the vaccine-autism link was good for ratings and readership precisely because it was so heated, so emotional, and so relevant to contemporary autism concerns. News reports that covered the debate or simply made reference to it found in it a ready source of tension and drama. On the one side stood doctors and public health experts talking about evidence. On the other side stood parents (and sometimes politicians) talking about personal observations, struggles, and beliefs. The debate was also a ready source of an emotional and widely relatable plight: the parent struggling to care for her child as best as she could. Often, as the media reported on scientific findings—another study showing no link between vaccines and autism, another piece of evidence discrediting Wakefield—the news was delivered over images of a parent holding a crying child as a needle slipped into his arm, or over images of autistic children rocking, banging their heads, or flapping their arms as they played alone, their parents powerless to reach them.

On a deeper level, the debate also evoked tension because it wasn’t just about science or medicine—it was a contest of values. Its core features included disagreements over the nature of evidence, the battle between reason and emotion, and impossible-to-settle disputes over the kinds of risks that parents should assume and the kinds they should avoid. These themes had deep cultural resonance—as did the trends and stereotypes with which they connected.

The battle between reason and emotion, or irrationality, was one of the most prominent themes in reporting on vaccination and autism in the later 2000s. The theme was well-captured in a 2009 article in Wired magazine by science writer Amy Wallace, which drew hundreds of angry comments online. Wallace cast the vaccine-autism controversy as a “war on science,” with one side defending data, evidence, and reason while the other side fought for “pseudo-science” and “snake-oil.” In defense of science stood Offit, described as a pediatrician living in middle-class modesty, who “from an early age . . . embraced the logic and elegance of the scientific method.” Among his enemies were men like autism advocate Curt Linderman, who was reportedly “puffing on a cigarette” as he told Wallace, “We live in a very toxic world.” The battle between allegedly rational and irrational actors boiled over into the reader comments. One reader joked that autism was caused by the decline in pirates, since the two were inversely correlated on a graph. Another accused Wallace of being irrational herself: “200 years ago you would’ve been writing this article on the practice of using leeches to remove ‘bad blood,’” he wrote, “eventually the truth does come out . . . hence we know the world is not flat.”

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That comment hinted at yet another key theme of vaccine-autism reporting: the nature of evidence and expertise. On one level, the debate was about the very claim that science alone formed the pinnacle of knowledge, and that scientists were the only source of such knowledge. “What I’m asking is that people trust their experts,” pleaded Offit on "60 Minutes." McCarthy, meanwhile, asked that doctors and scientists acknowledge the expertise of parents (and mothers in particular). “I believe that parents’ anecdotal information is scientific information,” she argued on "Larry King." “At home, Evan is my science,” she said on Oprah. In dispute was the definition of scientific evidence, the validity of that evidence, and such evidence as a basis for expertise. The debate over vaccines and autism took place in the context of a growing popular backlash against the pharmaceutical industry generally, which helped bring scientists’ claims to exclusive expertise under scrutiny. “Vaccines make the pharmaceutical industry billions of dollars. They make my business billions of dollars,” said UCLA pediatrician and McCarthy supporter Jay Gordon; surely, he added, that would influence how vaccines were used. To McCarthy and other vaccine-skeptical parents, anyone with any connection to Big Pharma’s profits could not possibly produce objective evidence. In this context, they argued that parental observations constituted critical evidence not only because parents knew their children best, but also because only their observations were untainted by profit and greed.

But if government, doctors, and the drug industry couldn’t be trusted, neither could selfish middle-and upper-middle-class mothers. Representations of these mothers constituted another key theme of vaccine-autism media reports. They were shown caring for autistic children, they were recorded saying that they blamed vaccines for the condition, and, increasingly as the decade progressed, they were held up as the nation’s premier vaccine refusers, putting the rest of society at risk of infectious disease epidemics in their narrow-minded quest to protect their own children from vaccine injury. The self-serving, usually white, often liberal mother appeared in media as diverse as "Frontline" and the television drama "Law and Order"—which often drew inspiration from the headlines of the day. In a 2009 episode, the daughter of a working-class mother caught a fatal case of measles from the unvaccinated son of an upper-class mother. When detectives went to the unvaccinated boy’s home (a posh New York brownstone), his mother refused to take the blame. “I’m not responsible for other people’s kids. It’s my family. It’s my choice,” she said. For choosing not to vaccinate her son, she was called a “lunatic,” a “nutcase mom,” a “danger to society,” and a killer, and ultimately she ended up in court. The jury didn’t convict her; her right to refuse vaccination for her son was protected by law. But she was condemned nonetheless for being “selfish” (the title of the episode), and for endangering her community in a misguided and foolish attempt to protect her son from an imagined threat.

This fictional character was a caricature of the educated, well-off, twenty-first-century parent often featured in media representations of the vaccine debate. She was a parent who trusted “alternative medicines, organic food and yoga” and distrusted “Big Pharma and their lackeys in the media.”The threat she chose to avoid was a primary concern of many vaccine skeptics in the 2000s (across lines of class, race, or politics): toxic chemicals in vaccines and their artificial stimulation of the immune system. In a 2005 article in Rolling Stone magazine, environmental lawyer and activist Robert F. Kennedy Jr. (nephew of President John F. Kennedy) charged that “public health authorities knowingly allowed the pharmaceutical industry to poison an entire generation of American children” with the mercury in vaccines. The controversial article raised the specter of an environmental scare “bigger than asbestos, bigger than tobacco”—invoking the idea that science had been wrong before.McCarthy, too, stressed that she wasn’t anti-vaccine but “anti-toxin,” and she lent her support to a rising popular movement that marched on Washington in 2008 to demand that government and industry “Green our Vaccines.”

“Green Our Vaccines” made the news because it featured celebrities McCarthy and her then-boyfriend and actor Jim Carrey. It also made the news because it spoke to a growing “green” movement in which consumers began seeking environmentally “friendly” cars, food, toys, clothes, and more. The movement was, in many ways, the contemporary embodiment of what anthropologist Mary Douglas and political scientist Aaron Wildavsky called a “widespread, across-the-board concern about environmental pollution and personal contamination.” In their study on risk perception, Douglas and Wildavsky argued that in our modern world, “evil” comes in the form of “hidden technological contamination that invades the body of nature and of man.” In this world, risks are “hidden, involuntary, and irreversible”—a perfect description of how many vaccine skeptics in the 2000s understood vaccines. Douglas and Wildavsky also argued that each society’s view of the environment shapes the risks and dangers it chooses to pay attention to or ignore. In this framework, the search for an objective method to choose between risks is “doomed to failure,” because tolerable and intolerable risks are determined not by facts and figures but by a society’s commonly held values. In media reports that covered the vaccine-autism link, scientists quoted facts and figures about the very “real” risk of vaccine-preventable diseases, and the minuscule or non-existent risks of vaccines themselves. Parents described the risks they most feared—autism, not polio; toxic chemicals, not diphtheria. Objectivity had little hope of bringing such disparate risk perceptions into alignment. And so the debate continued.

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The vaccine-autism debate also persisted because it was, in many ways, the perfect story for what sociologist Ulrich Beck dubbed the “risk society.” Concern with risk, Beck argued, is our modern condition. Americans and citizens of other affluent nations are at once acutely conscious of risk and pessimistic about the state’s and institutions’ abilities to manage risks. They are, as a result, plagued by uncertainty; since risk can’t be dependably identified or avoided, one has to assume it is everywhere. This mentality is connected to the increasingly protective form of child rearing prevalent in countries such as the United States, where the economic and emotional value of children continues its upward climb; safety gear and safety precautions for children—from car seats to organic baby food to flame-retardant pajamas—are ubiquitous and ever growing in number. In such a society, the media is a critical venue for identifying, communicating, and evaluating risks. The media certainly embraced this role in the debate over vaccines, covering it attentively, staying focused on the vaccine-autism link long after scientists had dismissed it, and giving voice to parental fears that spoke directly to a lack of confidence in government’s—and industry’s—ability to protect their children from omnipresent risks.

Excerpted from "Vaccine Nation: America's Changing Relationship with Immunization" by Elena Conis. Published by the University of Chicago Press. Copyright © 2014 by the University of Chicago. Reprinted with permission of the publisher. All rights reserved.