It was almost four in the morning when the Laceks arrived in Pittsburgh. Matthew was immediately placed in a medically induced coma. All the doctors could promise was that he’d live through the night. “They said something about not catching it quickly enough with the antibiotics,” Kelly says. “Even if he did recover, there was a good chance he would have permanent brain damage, or, best-case scenario, he would have hearing loss.”
For forty-eight hours, Dan and Kelly Lacek’s son remained in stable condition. “You’re in shock,” Kelly says. “You never let your guard down. You’re just so focused on him getting better.” Then, on Tuesday, just as they were growing more hopeful, Matthew’s blood pressure plummeted. The only thing the Laceks could think to do at that point was to ask their friends to pray for them.
When Kelly Lacek’s chiropractor told her that vaccines had been linked to autism, he was repeating the most recent of hundreds of years’ worth of fears about vaccinations. The roots of this latest alarm dated back to 1998, when a British gastroenterologist named Andrew Wakefield claimed to have discovered a new gut disorder associated with the MMR vaccine—and with autism. Wakefield based his conclusions on a case study of a dozen children who’d been brought to his clinic at the Royal Free Hospital in London. Almost immediately, Wakefield’s research methods and his interpretations, which had been published in the medical journal The Lancet, came under fire. Wakefield’s response was to appeal to the public rather than to his colleagues: The medical establishment was so determined to discredit him, he said, because he threatened their hegemony by taking parents’ concerns seriously. The media took the bait, and despite Wakefield’s lack of proof and his track record of dubious assertions and unverified lab results, they began churning out stories about how a maverick doctor was trying to protect innocent children from corrupt politicians and a rapacious pharmaceutical industry. Within months, vaccination rates across Western Europe began to fall.
Then, a year later, the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) publicly recommended the removal of a widely used mercury-based preservative called thimerosal from childhood shots. The move had been hotly debated; in the end, one of the factors that had tipped the balance was a concern that following the Wakefield brouhaha, any connection, real or rumored, between vaccines and neurodevelopmental disorders had a chance of unraveling public confidence in vaccines.
That fear proved to be well founded, in no small part because of the growing hold autism had on the public’s consciousness. In the half-century since “infantile autism” had been defined as a discrete medical condition, it had gone from being a source of shame for parents, who were blamed for their children’s conditions, to becoming a seemingly omnipresent concern, especially among those well-educated, upper-middle-class families for whom child rearing had become an all-encompassing obsession.
In spite of this increased attention, researchers in the 1990s were barely any closer to understanding autism’s origins or devising effective therapies for its treatment than their predecessors had been fifty years earlier. For parents of autistic children, this lack of reliable information resulted in feelings of hopelessness and frustration; for parents in general trying to determine the best course of action for the future, it fueled a sense that medical experts and health authorities couldn’t be counted on to look out for their families’ well-being.
Together, these reactions prepared the ground for new hypotheses to take root, regardless of how speculative or scientifically dubious they were. In the year following the CDC/AAP recommendations regarding thimerosal, a small group of parents decided that some of the symptoms of mercury poisoning seemed to match the behavior they saw in their autistic children—and they suddenly realized that their children had appeared to be fine before they’d received their vaccines. These parents began posting their observations online, sparking hundreds more parents to confirm that they’d noticed the exact same thing. With a network of nontraditional doctors and alternative health practitioners urging them on, they became more and more convinced that the common threads that ran through their stories were too odd and too widespread to be mere happenstance.
The more these newly politicized parents learned, the more outraged they became. Why were children with weak immune systems injected with vaccines just as potent as those used on children in perfect health? Why was everyone instructed to receive the same number of inoculations, regardless of their medical histories or family backgrounds? Why, for that matter, were more and more shots being added all the time? Was a chicken pox vaccine really necessary? Or one for the flu?
Just as had been the case with the MMR vaccine, there was no concrete evidence linking thimerosal to autism, and the anecdotal corroboration often seemed more impressive than it actually was. (To take but one example: Despite superficial similarities, the motor difficulties exhibited by people with mercury poisoning bear little resemblance to the repetitive movements typical of autistics.) That didn’t stop the American media from reacting much the same way their colleagues across the Atlantic had when Andrew Wakefield had published his assertions, as the emotional pull of stories featuring sick children and devoted parents outstripped anything as boring as hard data or the precautionary principle. In a matter of months, an ad hoc coalition of “Mercury Moms” transformed itself into a potent political force: Senators spoke at their rallies, public health officials tried to assuage their concerns, and federal agencies included them in discussions on how to spend tens of millions of dollars. Soon, vaccination rates began to fall in the United States as well.
By the beginning of the new millennium, Wakefield’s supporters and the proponents of the thimerosal link had joined forces to create an international cadre of vaccine skeptics whose message had an undeniable appeal: Parents trying to do nothing so much as raise their children had been taken advantage of by a society they had trusted—and now they were determined to make it right.
• • •
Over the past two decades, the instant accessibility of information has dramatically reshaped our relationship to the world of knowledge. Five hundred years after Gutenberg’s introduction of the printing press and Martin Luther’s translation of the Bible let common people bypass the priestly class, the vernacular of twenty-four-hour news channels and Internet search engines is freeing us to take on tasks that we’d long assumed were limited to those with specialized training. Why, after all, should we pay commissions to real estate brokers or stock analysts when we can find online everything we need to sell our houses or manage our investments? And why should we blindly follow doctors when we can diagnose our own ailments?
One of the first effects of this hyper-democratization of data was to unmoor information from the context required to understand it. On the Internet, facts float about freely and are recombined more according to the preferences of intuition than the rules of cognition: Mercury is toxic, toxins can cause development disorders, mercury is in vaccines; ergo, vaccines cause autism. Combined with the self-reinforcing nature of online communities and a content-starved, cash-poor journalistic culture that gravitates toward neat narratives at the expense of messy truths, this disdain for actualities has led to a world with increasingly porous boundaries between facts and beliefs, a world in which individualized notions of reality, no matter how bizarre or irrational, are repeatedly validated.
Take the “birther” movement, which contends that Barack Obama was born in Kenya and therefore is not eligible to be president. In the summer of 2009, Orly Taitz, a Russian-born dentist/lawyer/real estate agent, almost single-handedly turned her one-woman media blitz into a national preoccupation. Taitz, who believes that the Federal Emergency Management Agency is building internment camps to house anti-Obama activists and that Venezuelan president Hugo Chávez controls the software that runs American voting machines, makes for undeniably good television: She looks like a young Carol Channing, sounds like an overexcited Zsa Zsa Gabor, and has the ability to mak
e absurd accusations with a completely straight face. By midsummer, Taitz was appearing regularly on CNN, Fox News, and MSNBC, a decision the news channels justified with the risible pretext of needing to be fair to those on “both sides” of an issue about which there was nothing up for debate—at least not in the real world. Before long, mainstream on-air personalities like Lou Dobbs were pimping the story as hard as Taitz or any of her allies were, to equally comical effect.
This type of cognitive relativism—or “truthiness,” as fictional talk show host Stephen Colbert termed it—has become the defining intellectual trend of our time. Colbert coined truthiness as a way to define former president George W. Bush’s disdain for “those who think with their head” as opposed to “those who know with their heart.” Its pervasiveness was most tragically illustrated in Iraq: By inventing a set of facts to support the overthrow of Saddam Hussein, the Bush administration changed a discussion of whether Iraq had weapons of mass destruction to whether the theoretical presence of WMDs was sufficient justification for war. In the fall of 2004, after both WMDs and easy victory were revealed as mirages, a presidential aide made an astounding admission to The New York Times Magazine. The White House, he said, didn’t waste time worrying about those “in what we call the reality-based community” who “believe that solutions emerge from your judicious study of discernible reality.” That, the aide said, “is not the way the world really works anymore. . . . When we act, we create our own reality.” Orly Taitz couldn’t have put it any better herself.
My interest in the controversies surrounding childhood inoculations began in 2008. My wife and I were newly married, and though we didn’t yet have children, we found ourselves initiates in a culture in which people obsessed over issues about which we’d previously been unaware, such as the political implications of disposable diapers and the merits of home births. Another common preoccupation, we discovered, was the fear that widespread fraud was being perpetrated by the medical establishment. These people were our peers: They gravitated toward fields like journalism or law or computer programming or public policy; they lived in college towns like Ann Arbor and Austin or sophisticated urban centers like Boston and Brooklyn; they drove Priuses and shopped at Whole Foods. They tended to be self-satisfied, found it difficult to conceive of a world in which their voices were not heard, and took pride in being intellectually curious, thoughtful, and rational.
And, we soon learned, a good number of them didn’t trust the American Medical Association (AMA) or the American Academy of Pediatrics—or at least didn’t trust them enough to adhere to their recommended immunization schedules, which included vaccinations for diphtheria, hepatitis B, Hib, influenza, measles, mumps, pertussis, pneumococcal, poliovirus, rotavirus, rubella, and tetanus, all in the first fifteen months of a child’s life. This caught us by surprise: The AAP wasn’t high on the list of organizations we thought likely to be part of a widespread conspiracy directed against the nation’s children.
That fall, we were at a dinner party when the subject of vaccines came up for what felt like the millionth time. I asked the parents at the table how they went about making decisions concerning their children’s health. Did they talk to their pediatricians? Other parents? Were they reading books? Poking around online? One friend, a forty-one-year-old first-time father, said there was so much conflicting information out there he hadn’t known what to do.1 In the end, he said, he and his wife decided to delay some shots, including the ones for the MMR vaccine, which he’d heard was particularly dangerous. “I don’t know what to say,” he told me. “It just feels like a lot for a developing immune system to deal with.”
At the time, I had no idea what the evidence supported. Still, I cringed when my friend said he’d made his decision based on what he felt rather than by trying to assess the balance of the available evidence. Anecdotes and suppositions, no matter how right they feel, don’t lead to universal truths; experiments that can be independently confirmed by impartial observers do. Intuition leads to the flat earth society and bloodletting; experiments lead to men on the moon and microsurgery.
The more I pushed my friend, the more defensive he grew. Surely, I said, there had to be something tangible, some experiment or some epidemiological survey, that informed his decision. There wasn’t; I was even more taken aback when he said he likely would have done the same thing even if he’d been presented with conclusive evidence that the MMR vaccine was safe. “Let’s say that there haven’t been any studies that have uncovered a problem,” he said. “That doesn’t mean they won’t find one someday.” He was, of course, technically correct: It is always impossible to prove a negative. That’s why gravity is still a “theory”—and why you can’t prove with absolute certainty that I won’t wake up tomorrow with the ability to fly. (As Einstein said, “No amount of experimentation can ever prove me right; a single experiment can prove me wrong.”) Finally, he offered up this rationalization: “If everyone agreed that vaccines are so safe, we wouldn’t even be having this discussion.” By that point, my wife was kicking me under the table. I let the subject drop.
But when I got home that night I couldn’t stop thinking about that conversation. The issue didn’t affect me directly: No one close to me had a personal connection with autism and I didn’t know any vaccinologists or government health officials. What nagged at me, I realized, was the pervasiveness of a manner of thinking that ran counter to the principles of deductive reasoning that have been the foundation of rational society since the Enlightenment.
I began work on this book the next day. After reading hundreds of academic papers and thousands of pages of court transcripts, I couldn’t help but agree with a federal judge who presided over an omnibus proceeding in which thousands of families with autistic children requested compensation for what they claimed were vaccine injuries: This was “not a close case.”
Once I’d arrived at the conclusion that there was no evidence supporting a link between childhood inoculations and developmental disorders, I had to confront a set of issues that get to the heart of social dynamics and human cognition: Why, despite all the evidence to the contrary, do so many people remain adamant in their belief that vaccines are responsible for harming hundreds of thousands of otherwise healthy children? Why is the media so inclined to air their views? Why are so many others so readily convinced? Why, in other words, are we willing to believe things that are, according to all available evidence, false?
In an effort to answer those questions, I interviewed scientists and doctors, healers and mystics, government appointees and elected officials. I also spoke with dozens of parents who watched helplessly as their autistic children were enveloped by worlds outsiders could not penetrate. Some of these children were in obvious physical pain, some were sullen and unresponsive, some were violent and uncontrollable, and some moved from one extreme to another. The suffering of parents who feel unable to protect their children is almost impossible to describe—and helplessness only begins to cover the range of emotions they endured. There was guilt: Despite everything they were told, it was impossible for some parents to fully rid themselves of a feeling that somehow their child’s condition was their fault. There was resentment: Many were tired of having their lives taken over by a disease about which so little is known and so little can be done. There was bitterness: How could a society that propped up foreign governments and bailed out failing banks not pay for adequate services for disabled children? And there was anger: Surely someone or something was to blame for the ways in which their lives had been upended.
But more than anything else, parents spoke of their isolation. Those split seconds of synchronicity that freckle people’s days—the half-smile a new mom gives a pregnant woman on the street, the glance shared by two strangers reading the same book on the subway—those are missing from a lot of these parents’ lives. Those with children on the more extreme end of the autism spectrum tend to feel the most alone: There are no knowing winks when a child won’t stop screaming, no �
�I’ve been there” grins when he defecates in public. No one thinks it’s cute when a child scratches his mother until she bleeds and strangers don’t chuckle when a ten-year-old wants to know why the woman who just got on the bus is so fat.
This sense of being cut off from the world helps to explain why tens of thousands of parents have gravitated to a close-knit community that stretches around the globe. The fact that the community’s most vocal and active members believe that vaccines cause autism and that autism can be cured by “biomedical” treatments like gluten-free diets and hormone injections is of secondary importance—what’s paramount is the sense of fellowship and support its members receive. Every spring, between fifteen hundred and two thousand of these parents travel to Chicago’s Westin O’Hare hotel for the annual conference of a grassroots organization called AutismOne, which claims to be the single largest producer of information about the disorder in the world. For those three or four days, the dynamic that shapes many of these parents’ lives is turned on its head: Here, it’s people whose lives haven’t been affected by autism who feel out of place.
In order to protect this space, AutismOne discourages outsiders from attending. In incidents over the past several years, the organization has barred journalists identified as unsympathetic, kicked out parents who were perceived as being impertinent, and asked security to remove a public health official. This gatekeeping is severe but the worry behind it—that only people with a vested interest in the organization’s survival can be trusted to take a generous view of its beliefs—is not misplaced. Even after I was granted permission to attend one of the group’s conferences, I always had the feeling that my temporary visa did not come with the right to ask about the apparent contradictions highlighted by the weekend’s proceedings.
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