In a Different Key: The Story of Autism (65 page)

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.

—

I
F 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.”

—

H
AVING 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.”