If there was an autism epidemic under way in the earliest part of the twenty-first century, then it stood to reason that something had to have caused it. It would have to be something that had appeared on the landscape only a few years before the start of the new millennium, because that is when the numbers began to jump. It would also have to have been present in the lives of most children in the United States and the UK, since those were the epicenters of the phenomenon. Finally, it would have to be taking advantage of some as-yet-undetermined pathway into the bodies of these children, thus affecting their brains.
Recent. Everywhere. Invasive. Whatever the culprit, those would be its distinguishing characteristics.
In the winter of 1998, in London, a suspect was named. It was a vaccine.
THE FUROR OVER the so-called vaccine theory of autism was fueled by a widespread panic that children could get autism from a doctor’s needle. Lasting for years, the fear was ignited at London’s Royal Free Hospital on the morning of February 26, 1998. That day, the hospital’s media department called in reporters for a preview of a paper by one of its star researchers, a young gastroenterologist named Andrew Wakefield. His paper, written with twelve coauthors, would be appearing in a few days in The Lancet, Britain’s oldest medical journal, and one of its most respected. That association, and the hospital’s name, bestowed instant credibility on Wakefield, which had a lot to do with how the world responded to what he said he had found.
Wakefield’s paper described twelve children he had seen in the previous year or two as showing autistic behaviors paired with severe intestinal inflammation. Upon further examination, Wakefield reported, he had found something else in each of the children, who were between three and ten years old: traces of measles virus in their intestinal tracts. Based on this, Wakefield and his team speculated that this three-part combination—gut issues, autism, and measles virus—comprised the basis for a single syndrome. They touched briefly on the possibility of a “causal link,” and then they named their candidate for what that causal link was: the vaccine known as MMR had been administered to eleven of the children, and not long before the stomach problems and autistic behaviors began.
MMR, a trio of vaccines delivered in a single shot, targeted three different diseases: measles, mumps, and rubella. According to the paper, eight of the twelve children had been developing normally, but then, within days of getting the injection, began to display classic symptoms of autism, including loss of speech. In one instance, the change occurred within a single day. In some cases, the authors reported, it was the parents who first suggested that the two events were linked by a “general association in time”—first the shot, followed soon after by a deterioration in behavior.
No one reading the paper could miss what its authors were getting at: that the live measles virus in the MMR vaccine might provoke inflammation in the gut, and that this inflammation might in turn cause the brain to become inflamed, resulting in autism. This was an intriguing idea, certainly, but it was still entirely speculative. The main evidence for it—the recollections of parents—was too thin to support strong scientific claims. Wakefield and his colleagues acknowledged that it was still only a hypothesis in their use of qualifiers throughout the paper: “might be,” “possibly,” “if,” and even “did not prove an association.”
The press conference was a debacle. The hospital’s PR team had placed Wakefield at a table with four other doctors, including Arie Zuckerman, the dean of the medical school, who were there to reassure the public that the MMR vaccine was in fact safe. Wakefield, however, had copied Zuckerman on a letter four weeks earlier in which he stated that, if asked directly, he would acknowledge his doubts about MMR’s safety. Of course the reporters egged on Wakefield to get specific about whether he saw the MMR as safe or not. As he had said he would, Wakefield replied that he had concerns about the MMR vaccine. In his view, he explained, its mixture of three kinds of live virus might be too much for some young children’s immune systems. He was not opposed to the use of a measles-only vaccine for any child—including his own. But a three-in-one shot, he said, was something that parents might want to avoid in favor of splitting the vaccination into three separate shots spaced out over time.
“I do not think the long-term safety trials on MMR are sufficient,” he said. Then he put an ethical frame around the issue. “One more case of this is too many,” he declared.
Zuckerman, looking shocked, jumped to his feet. The reporters who were present remember him pounding on the lectern as he tried to erase the impact of the previous few minutes. “Hundreds of millions of doses of these vaccines have been given worldwide,” he stated. “They’ve been shown to be absolutely safe.”
For a moment, Wakefield seemed to read correctly that his boss wanted him to get back “on script.” “I just want to say a couple of things,” Wakefield broke in, “and that is to reassure you we are not at odds on our perception of the need for a measles vaccination. We are all agreed on that and that is extremely important.” But in his next sentence, he was back off again. “I don’t agree with Professor Zuckerman on the extent of the safety trials that have been conducted.”
Remarkably, another doctor on the panel then began wondering aloud if perhaps the young gastroenterologist was on to something. “It does seem,” he mused, “that this unique combination of having three viruses in the same injection may be an unnatural and unusual event.” It went on like this for more than half an hour, after which Wakefield began giving one-on-one interviews, elaborating further on why his MMR discovery merited follow-up study, and, in the meantime, avoidance of the MMR vaccine. In the next few days, his most often quoted statement—a line he used in more than one interview following the news conference—was the one about his personal motivation for taking this stand: “It’s a moral issue for me.”
It was a rhetorical choice that would alter his career forever. Nearly every virologist, pediatrician, and public health official in the world knew the MMR vaccine to be a superb example of applied science and a lifesaver; it had driven all three of the targeted diseases into virtual oblivion. If Wakefield wanted to make this a moral issue, the science behind his claims had better be staggeringly persuasive.
But there was a second constituency that needed a good deal less persuasion. Britain had a storied history of vaccine skepticism, whose adherents had been at odds with the public health authorities since the late nineteenth century. By the late twentieth century, they were a fringe and not very successful force, given that the British public overwhelmingly supported the practice of vaccination. This was demonstrated with immunization rates above 90 percent for most vaccinations in the mid-1990s, even though Britain’s program was not mandatory, the way it was for public school attendance in the United States. While some vaccine opponents flatly questioned the necessity of vaccines, suspecting pharmaceutical companies of scheming to make a market for themselves, others conceded vaccines’ effectiveness but sought more evidence of their safety. Still others nurtured a philosophical hostility toward vaccines. They resented the state’s forcing any person to submit to any invasive procedure, regarding it as an affront to individual liberty.
Of course, it could not be said that vaccines have never caused harm. Vaccines’ most ardent supporters acknowledge that the minute risk exists, for any given individual, of an adverse reaction. This is true with any pharmaceutical product. Regardless of the precautions taken, there will always be individuals who, because of their unique biological makeup, will have a toxic reaction to a drug or a device that has generally been shown to be safe. These outcomes do not mean that the product is defective. Penicillin is not considered a defective antibiotic because a small subset of patients can have powerful, even fatal, allergic reactions to it. Such susceptibility cannot be predicted or screened for. Society accepts this imperfect situation because statistics show that penicillin does good for far more people than it will ever harm.
When an immunization program is launched, it is a given that some adverse effects will occur that were not discovered during clinical testing, because they are so rare and so specific to the individuals who suffer them. Public health professionals who promote mandatory universal immunization know this, but they believe that the minuscule risk is tolerable, as well as necessary. Not getting vaccinated exposes that same individual to the much more probable danger of contracting the disease the vaccine is targeting. Moreover, the more people who are vaccinated, the greater protection there is for the population as a whole.
But this logic offers no solace to those with the bad fortune to make it into the injured group, when the mandatory needle in the arm is the thing that makes a child blind, or deaf, or paralyzed for life. In those rare instances, a family’s anguish is compounded by the fact that there is rarely proof that the injury is the direct result of a vaccine. Usually, the most convincing evidence, from the family’s point of view, is timing: the observed fact that the first appearance of an affliction appears to coincide almost exactly with the administration of the vaccine—within days, or even hours. But coincidence does not prove causation. And that was all Wakefield had—“a general association in time”—to connect the MMR vaccine to the children’s autistic behaviors.
Still, to the twelve families whose children took part in his study, the lack of convincing data to support Wakefield’s claims was beside the point. They felt that Wakefield was the first scientist who had ever really listened to them. No one else had treated their ideas about the connection between the MMR shot and their children’s illnesses as valid or meaningful. Moreover, Wakefield was a gastroenterologist. An extremely troubled digestive system was one of the two ailments common to all twelve of the children; the other was autism. As the families saw it, these two things had to be related, having started at about the same time.
It was a theory they could not get their own doctors to take seriously. Some parents felt scoffed at by the medical system. But this man in a lab coat—which Wakefield would don for some of his TV appearances—was telling the world that they were not crazy or naïve or ignorant. He was framing it as a matter of good and evil, right and wrong—on behalf of their children, whom the parents believed had been wronged for life. In that instant, under those TV lights at the Royal Free, a champion emerged from inside the medical world that had, until then, spurned their insights.
But now, there was the spectacle of the other doctors at the press conference pouncing on Wakefield’s warning, falling over one another to vouch for the MMR vaccine’s safety. Over the next couple of days, similar statements would be issued by a slew of British medical authorities, with vaccine experts in the United States joining them, and the World Health Organization declaring itself “frankly alarmed by suggestions there is a causal relationship.”
To the families, to Wakefield, this phalanx of statements in support of MMR only proved what they were up against—a wall of well-entrenched interests, dead set against even entertaining the possibility that the MMR vaccine might have ill effects. Any critique of his work came to be seen as a villainous personal attack on a good man trying to do the moral thing. It was also an attack on the families, their children, and any future child who might receive the MMR vaccine. They circled protectively around this young rogue researcher. Now it was war.
And “vaccines cause autism” was their rallying cry.
ALTHOUGH WAKEFIELD NEVER actually spoke the words “Vaccines cause autism” in February 1998, that was what the public heard over the coming weeks and months. In a nation already jumpy about vaccines, headlines using words like “alert” and “ban” about the MMR vaccine triggered alarms that would never quite die down again. It was not that reporters bought into the theory as fact. All the stories pointed out that Wakefield was an outlier and that the measles vaccine had been a lifesaver. A report on Independent Television News (ITN) in the UK provided numbers as well as an animated graphic: compared with the 800,000 measles cases reported in 1950, there had been only 4,170 cases in 1997. A well-known immunization authority, Dr. Robert Aston, was also shown reminding viewers that “immunization is the best thing, bar none, that has come out of medical science.”
But the autism parents who appeared in the same news reports, especially on television, were a lot more compelling than the experts and their numbers. The ITN coverage portrayed a number of attractive kids who had autism, whose mothers explained, with near certainty, that it was the “jab,” in British parlance, that had made their children autistic. “It’s Russian roulette,” said one mother. “You take a child down for the jab, and which one’s going to have the disorder?”
Wakefield’s press conference had been at the end of February. By the middle of March, 1 out of 5 general practitioners in the UK had at least five families in their practice who either refused vaccination altogether or insisted on getting the measles vaccine separately. What was more, the Guardian reported, some doctors were starting to share the parents’ doubts. A Dr. Nagle in North London was said to be “advising parents against the booster MMR given to children at about four years old.”
It was a self-perpetuating cycle. The greater the number of parents who decided to refuse the MMR, the more the news media saw a valid trend story. By June, only four months after Wakefield published in The Lancet, MMR vaccinations had dropped almost 14 percent in South Wales.
It was a rare story that held the public in thrall not just for weeks or months, but for years. Through the rest of 1998 and into 1999, the groundswell of resistance to the MMR continued. While parents circulated petitions against the vaccine, Parliament debated its purported dangers. In 2001, the fear was still rampant, and Prime Minister Tony Blair stumbled into a political buzz saw. Having publicly encouraged parents to get the MMR for their kids, he then refused to say whether his twenty-month-old son had received his.
During this period, Wakefield’s career went through its own tumult. He had continued with his research even as controversy bloomed all around him, parrying in print all the researchers who disputed him, and recording new cases of his syndrome—scores of them. By December 2001, nearly four years after the publication of the pivotal article on MMR, he had published nearly a dozen further studies on bowel disease, measles, and autism. These appeared in a broad range of well-regarded, peer-reviewed journals.
The vaccine scare made Andrew Wakefield famous and, in some circles, beloved. He was flooded with interview and speaking requests, and he traveled the world by invitation, more identified than ever with the idea that vaccines were the cause of autism. In 2000, he was brought to Washington to testify about his work on MMR before Congress. He appeared on CBS’s 60 Minutes to discuss his work that same year. Throughout, and though repeatedly challenged, he refused to rescind his recommendation that parents avoid the MMR pending proof of its safety.
His use of his increasingly high profile to spread the wrong message finally proved too much for Wakefield’s employers. In November 2001, Wakefield resigned his position at the Royal Free Hospital, but only after being told he had no choice in the matter. “I can only assume,” he told The Lancet, that his research “was politically incorrect.” With the Sunday Express, he struck a now-familiar posture: “The medical establishment may not have the stomach for it, but I cannot abandon these children….I’m not going to whinge, I am going to move on.”
His departure from the Royal Free did nothing to set the public’s mind at ease about vaccinations. On December 5, the Guardian reported that the MMR vaccination rate in London had fallen to 79 percent, when the ideal was 95 percent or above. Scotland’s would fall to 86 percent by 2003, compared with 94 percent in 1995. “For now,” wrote reporter Linda Steele, “a question mark still hangs over the safety of MMR.”
Nor did Wakefield’s dismissal damage his reputation in the eyes of his followers. After losing his job, he began spending more time in the United States, supporting his work and his family through private funding. His story, meanwhile, received the ultimate media accolade when it was made into a feature film for British TV in 2003, viewed by 1.6 million people. Wakefield was portrayed by the dignified, warmhearted Hugh Bonneville, who would later play the patriarch of the Crawley family on Downton Abbey. Titled Hear the Silence, the film depicted a dystopian medical universe in which most doctors and scientists are hidebound, cynical, cowardly, or scheming—with Wakefield as the pure-hearted, truth-seeking scientist-detective who went wherever the data led him. Asked early in the film whether he believed that the MMR caused autism, Bonneville as Wakefield paused, looked off into the middle distance, and responded, “I wish I knew.” But the makers of the film made their views clear; the answer was an unqualified yes. Actress Juliet Stevenson was typically spectacular as the mother of a small boy with autism, who spent most of the film battling one doctor after another, each of whom coldly dismissed what she had to say. “Something happened to him!” she cried out in frustration to each. “That’s what I know in my heart!” By the film’s end, when Stevenson stood up to her pediatrician with the words “Fuck you!”—the second-to-last line in the movie—motherly instinct had been fully vindicated as the best kind of evidence there is.
The trouble was that mainstream medicine lacked a convincing rejoinder. Certainty requires data, and collecting data takes time. Until then, no one other than Wakefield had looked specifically at whether autism and the MMR were linked. In other words, the experts’ best evidence for safety was the lack of evidence of a lack of safety. Unfortunately, that did not answer the question parents really wanted answered, which was, “Where’s the evidence that MMR does not carry the risk suggested?”
The early lack of a convincing answer was a boon to Wakefield. It also gave a long head start in Britain to the popular nightmare that autism could be caught from a needle. Even Wakefield acknowledged the lack of scientific proof for such a link—but thanks to him, the British press, and human nature, the connection was held together by something else.
Fear.
IN THE YEARS since Wakefield’s initial press conference, that fear had long since spread to the other side of the Atlantic. Throughout 1999 and into the spring of 2000, the US Congress had held at least three hearings on vaccine safety. In the first couple of those, autism was mentioned only in passing. At the hearing held in April 2000, however, by the House Committee on Oversight and Government Reform, the epidemic story came into its own as a full-time political narrative, where it soon became rare in Washington for the words “autism” and “vaccines” not to be spoken in the same sentence together.
In that April hearing, the chief witness was Andrew Wakefield, making his American debut. It was a star turn. His British accent charmed, and the slides and data he brought along caused alarm. He reported finding still more cases of children with autism, stomach problems, and measles virus. “We have now investigated over one hundred and fifty children,” he announced. He had found the syndrome in 146 of them. “The great majority had autism.” In front of cameras and reporters from the nation’s top networks, he spelled out what it all meant: “The story as told to us and which we have an obligation to report is that the majority of children regressed following a period of normal development in the face of MMR vaccination.” As always, he added a footnote: “That does not mean it is the cause of the disease.”
In June 2000, at yet another vaccine hearing held by Congress, a mother from Georgia named Lyn Redwood proved a superb witness. She spoke about her son Will, and how she believed vaccines had changed him. “He was a happy baby who ate and slept well, smiled, cooed, walked and talked, all by one year of age,” she said. “Shortly after his first birthday, he experienced multiple infections, lost speech, eye contact and developed a very limited diet and suffered intermittent bouts of diarrhea.” Redwood was certain vaccines were to blame.
It was dismally similar to the stories British parents had shared with the news media for the preceding two years. But Redwood’s account differed from the British narrative in a crucial respect. It had nothing to do with the measles virus at the heart of Wakefield’s theory. She never mentioned measles—or the MMR vaccine, for that matter. Instead, as Redwood explained it, an entirely different culprit was behind her son’s injury.
That culprit was mercury. It was true: vaccines contained mercury, a known toxin. Since the 1930s, mercury had been added to many vaccines in order to guard against contamination. The bottles kept in hospitals and doctors’ offices contained multiple doses and were corked with rubber stoppers. A syringe needle was inserted to siphon off a single dose each time a patient had to be given a shot. In theory, the needles were sterilized before each pull of vaccine. In practice, live microorganisms were sometimes able to get into the fluid, spoiling the whole bottle, and putting patients at risk of infection.
In the 1930s, to prevent this risk, Eli Lilly and Company began marketing a product called thimerosal, an antibacterial and antifungal powder designed to be used as a preservative, usually in solution. The second syllable of the word thimerosal—mer—was derived from one of its key components, mercury, which made up almost half its molecular weight. In minute measure—as little as .01 percent in solution—thimerosal proved so effective at preserving sterility that for decades it was a standard ingredient in a wide range of products, from nasal sprays to contact lens solution. But even after the manufacturers of those products switched to new preservatives, pharmaceutical firms stuck with thimerosal in vaccines. By the late 1990s, it had been used as an ingredient in more than thirty separate vaccines.
Mercury’s presence inside the body does not necessarily warrant an alarm call. Virtually all humans have some amount of the compound known as methylmercury in their systems, a result of traces in the food they eat and in the air they breathe. Dosage matters. A typical six-ounce can of white tuna fish, for example, contains approximately 60 micrograms of methylmercury—approximately two-millionths of an ounce, which has never been grounds for a mass recall of tuna from the grocery store. At the same time, there are often warnings about tuna, at least for certain populations, like pregnant women and young children, reflecting the fact that precise risk levels for mercury in humans have always been a gray area. There is not much data, since experiments based on deliberately feeding people mercury would be ethically impossible.
Guesses have been made, however, by studying accidentally poisoned populations, such as the several thousand Iraqis who, in the early 1970s, ingested imported grain that had been treated with a methylmercury fungicide. Neurological damage was widespread, and included death. Afterward, scientists combed over the data from Iraq and a few other places with known high exposure. Out of this work, in 1999, the US Environmental Protection Agency produced a new so-called reference dose for mercury—the amount that humans can safely ingest every day without undue effect over time. But the EPA built in an extremely cautious—and therefore large—margin of safety. The number was 0.1 micrograms per kilogram of body weight per day, which deliberately “overstated” the statistically established risk by a factor of ten, to allow for scientific uncertainty. For a 170-pound man, that came to about 8 micrograms daily, or what he would get in about one-eighth of a can of white tuna. That was maybe three forkfuls, which demonstrated just how cautious the EPA wanted to be with its reference dose, in its uncertainty about how much trace mercury is too much. And yet, looked at another way, the EPA limit was not all that stringent. That 170-pound man could still eat a lot of tuna fish—47 cans a year—and stay within the reference dosage.
Vaccines made with thimerosal—like the ones Lyn Redwood went to Congress to sound the alarm about—contained 25 micrograms of mercury per shot. That seems small: less than half a tuna can’s worth. Also, nobody is routinely given 47 shots a year, nor does the mercury compound used in the vaccine preservative break down in the body in the same manner, or linger as long there, as the mercury found in food. Nevertheless, it was only in 1998, in response to questions asked by Congress, that the scientists trusted with guiding US immunization policy even began to tally up how much mercury was getting into the bodies of young children by means of vaccinations. The result surprised them because it was more than they had realized.
In the mid-1980s, the DTP vaccine, which protected against diphtheria, was the only thimerosal-containing vaccine regularly given to infants. But soon, more shots were added to the recommended schedule. By 1991, it included the Hib vaccine, a defense primarily against influenza-induced meningitis, and the hepatitis B shot—with all three taking place, and followed up by boosters, during an infant’s first six months. As a result, by 1999, a six-month-old infant’s exposure to the mercury in thimerosal had reached 187 micrograms. Moreover, typically, there were days when an infant received multiple shots, delivering a mercury dose of more than 60 micrograms in the space of a few minutes. That was, to return to the tuna fish example, the equivalent of more than one can, fed to a 10-pound child. Of course, shots were not a daily occurrence. They were spaced months apart, with zero thimerosal exposure in between.
At a loss to know whether these levels represented a danger to children or not, the nation’s top immunization experts decided to err on the side of caution. In July 1999, pushed especially hard by a Johns Hopkins pediatrician named Neal Halsey, the American Academy of Pediatrics (AAP) and the Public Health Service (PHS) released coordinated statements containing three recommendations: that pediatricians begin using thimerosal-free vaccines whenever possible; that vaccine manufacturers remove thimerosal from future formulations; and that the vaccine against hepatitis B, normally given at birth, be postponed in most cases to two to six months.
Bizarrely, the statement went on to say that none of these recommendations was actually justified by any known risk from thimerosal. It tried to sound unequivocally confident on this point, asserting that there was “no data or evidence of harm caused by the level of exposure.” But much of the rest of the statement seemed to undermine that certainty, as it made repeated references to the “unknown and probably” quite small risk that something might be wrong with the vaccines—and gave as their reason for calling a retreat from thimerosal use the principle that “any potential risk is of concern.”
On top of that, the AAP issued a press release containing remarks by the academy’s president, Dr. Joel Alpert, which came out sounding less than reassuring, although the opposite effect was clearly intended. “The current levels of thimerosal will not hurt children,” Alpert was quoted as saying. “But reducing the levels will make safe vaccines even safer.” The two organizations’ tangle of messages made for one of the most confusing public health announcements in US history. It was also among the most consequential.
IF NOT FOR the experts’ strangely worded policy revision, Lyn Redwood might never have suspected a link between autism in her son and the mercury in vaccines.
But because the announcement seemed to point to a problem, it moved her to dig out her child’s immunization records, and to calculate how much mercury he had been exposed to from vaccines in his first year of life. “My worst fears were confirmed,” she later told Congress. “All of his early vaccines had contained thimerosal.”
Around the United States, other autism parents, following the same impulse, were making similar discoveries. Some had been suspicious of vaccines already, as whispers of Wakefield’s hypothesis about MMR vaccines started crossing the ocean. Cure Autism Now was soon demanding faster action by the government to get thimerosal out of vaccines. But for children who had shown signs of autism before ever receiving the MMR—and that included Redwood’s son—it had to be something else about vaccines besides the measles virus that explained what had happened to their kids. For those parents, Redwood proved a superb spokesperson.
In late 1999, Redwood created a small website devoted to the topic of mercury in vaccines, which quickly became a crossroads for parents who stumbled online seeking counsel and company in their grief and certainty that thimerosal had caused autism in their kids. Through this spontaneously formed network, Redwood emerged as the most prominent of the “Mercury Moms,” a moniker that stuck for a small circle of the most active mothers. Increasingly, it was how she was identified in the introductions to speeches she gave, and in TV interviews.
Redwood also had the advantage of presenting a consistent demeanor of calmness and composure. While there were times when parents blaming vaccines were depicted by critics as overwrought and ignorant, Redwood never fit that stereotype. Throughout all the adversarial discourse, she remained consistently even-tempered, earnest, and civil. Even those who thought her anti-thimerosal campaign was misguided had to acknowledge her professionalism, her preparedness, and her willingness to listen as well as speak. Like her husband, Tommy, an ER doctor, she was a medical professional—a nurse practitioner—who could engage in clinical discourse without drowning. Not only had she administered many vaccines herself in her career, but she continued to attest to the importance of vaccination as a public health priority. Her position that vaccines should be made “safer”—not eliminated—refuted the broad accusation made against the parents in her camp that they were all “anti-vaccine” extremists. Some were, to be sure, but the majority were not.
To many people, she made eminent sense in her July 2000 appearance before Congress, when she used the government’s statement on thimerosal against it. “The statement that there is ‘no evidence of harm,’ ” she said, “does not equate to no harm having occurred. The truth is that we have not adequately looked or we just refuse to see.”
HAVING FOUND ONE ANOTHER, the parents who wanted thimerosal investigated—and someone made to pay for the harm they believed it caused—followed the path blazed by earlier generations of autism parents: they organized. In 2000, the group that had taken shape around Lyn Redwood formed a nonprofit called SafeMinds. Its founding members organized with sophistication, reflecting some of the leading activists’ professional experience in law, health care, public relations, and management consulting. They were fluent in the use of the Internet, which was just then coming into its own as a vehicle for organizing and advocacy. And they were determined to arm themselves with arguments and data that would sell their message to a wider world.
Like other groups of parents before them, they immersed themselves in scientific literature, to where they could hold their own—up to a point—when challenging the pronouncements of established scientists with whom they disagreed. One group even produced a research-based paper laying out their hypothesis that autism was, as the paper’s title put it, “A Novel Form of Mercury Poisoning.” Deep with footnotes and tables of data, it nevertheless found no takers for publication, until it was accepted by a Scottish journal called Medical Hypotheses. That was not, however, the sort of ringing endorsement of their seriousness that the parents hoped for, since the journal’s self-proclaimed mission was publication of “hypotheses where experimental support is yet fragmentary.”
That revealed what would always be the vaccine activists’ Achilles’ heel—the lack of convincing scientific support for an unproven hypothesis that its adherents embraced as a given. Reversing the standard and time-honored traditions of science, they started with the conclusion that vaccines had hurt their children, and then went looking for the evidence that would prove them right. This was made explicit in a statement that appeared on the SafeMinds website in 2001, asserting that research “is expected to prove that thimerosal is a cause of autism.” This mind-set was to the group’s detriment, creating the impression for many that they were naïve about the ways of science. They readily embraced the full range of alternative therapies, with chelation still an option many employed. Chelation itself had toxic side effects, and even, in rare instances, caused death. Most radically of all, a Maryland doctor began injecting boys with Lupron, a drug that inhibits secretion of the so-called sex hormones—estrogen in women, and testosterone in men. Developed to slow the advance of prostate cancer and fibroids, it has also been administered to sex offenders as a form of “chemical castration.” When injecting children with autism, the doctor posited that mercury-induced autism was accompanied and exacerbated by excessive levels of testosterone, which interfered with children’s ability to excrete mercury. While many of the parents using these therapies reported seeing beneficial effects, none of the methods was supported by controlled research, and some were outright refuted by the scientific establishment.
Nevertheless, the mercury parents’ political skills led to a significant win for them in the scientific arena in the second half of 2001. Responding to the fear they had fanned, Congress ordered the US government’s medical think tank, the Institute of Medicine (IOM), to assess the state of the available research on thimerosal and autism. Several of the parents testified before the IOM commission assigned to the task. On October 1, the IOM panel issued its finding that “evidence to accept or reject” the parents’ hypothesis of a causal relationship between thimerosal and autism was “inadequate.” Moreover, the task force took the view that, pending further evidence to confirm or refute it, “the hypothesized relationship is biologically plausible.”
To the parent-activists, this was a major win: validation from the top that their claim was not just some far-fetched fantasy. Encouraged, emboldened, they pressed forward with their case, evoking the autism parents of earlier generations in the sheer intensity of their efforts. In doing so, the mothers and fathers operating in this first half of the first decade of the new millennium had two huge advantages over their predecessors. One was the Internet, where a core group of users could log up to thousands of postings, leading to a sense of support and solidarity, if not an exaggerated sense of strength in numbers.
Their other advantage was the complete upending of the power balance between professionals and “consumers,” which had occurred in the forty years since autism activism had been born. Gone was the habitual deference to expertise once expected of lay members of the public. Suspicion of authority, and the impulse to challenge it, had become familiar practice. The Mercury Moms never doubted their right to get in to see the top vaccine people at the FDA, the NIH, or the CDC. The officials at these agencies must have believed in this entitlement too, or at least found it politically wise, because they granted the parents the meetings. Parents were invited to question officials in open sessions and to present testimony at scientific hearings.
Once timid, almost “hat in hand” in their dealings with the expert class, autism parents of the 2000s assumed the right to hold the medical authorities’ feet to the fire. One mother, who later was a guest on NBC’s Today show, boasted in an online posting about joining fellow parents in disrupting a meeting at the NIH, where they had all been invited to be updated by some of the nation’s leading autism researchers on their latest work. Irritated when the presenters began discussing studies that had nothing to do with “their” issues—vaccines, gastrointestinal issues, or food allergies—people in the audience began interrupting, grabbing the floor microphone, and hollering “We are not stupid!” and “Why are you wasting our time?” and “Listen to me: WE ARE NO LONGER SUSCEPTIBLE TO YOUR PROPAGANDA!” At one point, the mother who wrote the account tried to launch a mid-meeting boycott. “If the NIH is going to continue wasting our time,” she declared, “then I am going to go have lunch.” A section of the audience rose to follow her. Though she did not follow through, and later said she regretted behaving this way because it was “non-productive,” she admitted that “to publicly humiliate those in power felt good.”
So far had the pendulum swung that, at times, the bureaucrats in charge of the nation’s public health came across as—if not humiliated—then thoroughly cowed by the fury of those who believed in the thimerosal link. Under powers Congress granted the people in the 1970s, the parents could now get copies of government scientists’ internal emails, memos, and transcripts of meetings, which they perused for signs of a government cover-up of mercury’s risks. One such transcript, fed to environmental lawyer Robert Kennedy Jr., was used by Kennedy in a 2005 Rolling Stone article called “Deadly Immunity,” where he charged that the government and vaccine manufacturers had colluded “to hide the risks of thimerosal.” He called it “a chilling case study of institutional arrogance, power and greed.” Following the article’s publication, the Senate launched a formal investigation into possible improprieties by government scientific officials, including financial conflicts of interest, where members of the nation’s vaccine policy leadership were treated like defendants.
The year 2005 saw another landmark for the mercury theory. It was the year a writer named David Kirby published a potboiler-style account of the Mercury Moms’ campaign called Evidence of Harm. Kirby adopted the posture of an impartial journalist, asserting that “there are two sides to every good story, and this one is no exception.” But with Lyn Redwood as a leading player in the narrative, and one of its major sources, the book’s sympathies were tilted unabashedly toward the activist parents who, Kirby wrote, “never abandoned their ambition to prove that mercury in vaccines is what pushed their children, most of them boys, into a hellish, lost world of autism.”
For stoking fear and increasing awareness of autism, Kirby’s book was unprecedented in its power. He was indefatigable in promoting it, appearing everywhere from the Montel Williams Show to NBC’s Meet the Press. He gave talks all over the United States and was a frequent guest on a popular radio show whose host, Don Imus, was a complete believer in the thimerosal connection. The “Evidence of Harm” Yahoo! group drew first hundreds and then thousands of postings each month, taking over as the primary online meeting point of the mercury theorists.
With its overtones of the Erin Brockovich story, no one was surprised that Kirby’s book, which became a New York Times bestseller, was quickly optioned for a Hollywood movie. Reading it made parents everywhere feel that there was a clear and present danger that their child could get autism. They became afraid, and no awareness campaign had ever been more powerful than fear.
More politicians began picking up on that fear. Lobbied by parents, and in particular by Cure Autism Now’s Jon Shestack, the Senate in 2006 passed the Combating Autism Act without a single “no” vote. The act authorized a billion-dollar expenditure over five years, dedicated to meeting the needs of people with autism. President George W. Bush signed the revised bill into law in late December.
In addition to authorizing the billion dollars, the law overhauled the composition of a committee established to advise the federal government on how to spend the money. Called the Interagency Autism Coordinating Committee, it sounded like one more lifeless chunk of bureaucracy. But the reconstituted IACC was meant to have some real heat behind it, while reflecting the fact that autism had now become a political concern. This showed in the list of people asked to join the new IACC. It glittered with the names of experts, nearly all with MDs and PhDs, who represented the top ranks of the government services and health-research bureaucracy. But the law had also required the new IACC to include citizens it called “public members.” There had to be at least six such members—people who were not part of any federal bureaucracy but who had a connection to autism. At least one had to be “a parent or legal guardian of an individual with an autism spectrum disorder.”
In 2007, Lyn Redwood, by then president of SafeMinds, received a letter on official federal government stationery. Signed by Mike Leavitt, secretary of the Department of Health and Human Services, it informed her that she was being offered one of the six public slots.
To autism parents of earlier times, such an invitation would have been unthinkable. Redwood’s appointment, in particular, represented a radical break. A Mercury Mom had acquired a top position in the hierarchy of autism policymaking in the United States, to sit among scientists. A direct outcome of the fear caused by the claim that vaccines had created an autism epidemic, it was a remarkable turn of events, and a signal indicator of the arrival of parents as a political force.
But another force had entered the autism arena by this time, an organization founded in 2005, whose dominance would soon, by design, have an influence on almost everything related to autism, from science to media attention to politics. The timing of its establishment—right in the midst of the epidemic scare—was critical, both to its purpose and to its strategy.
This group, however, was not founded by vaccine activists, or even by parents. This time, it was a pair of grandparents.