Falsehood flies, and the truth comes limping after; so that when men come to be undeceived, it is too late; the jest is over, and the tale has had its effect.
—JONATHAN SWIFT
Walter Orenstein had been the first to propose a study evaluating the risk of thimerosal. But because the preliminary results of the study were horribly flawed—as discussed by the conferees at Simpsonwood—it hung under a cloud. Lyn Redwood, Sallie Bernard, Mark and David Geier, Boyd Haley, Robert F. Kennedy Jr., David Kirby, and everyone else wedded to the thimerosal-causes-autism hypothesis roundly dismissed the study’s final conclusions. But Orenstein’s suggested study wasn’t the only one to examine whether thimerosal caused harm. Eight more followed.
In August 2003, Paul Stehr-Green published a paper in the American Journal of Preventive Medicine. Stehr-Green studied children with autism in Sweden and Denmark from the mid- 1980s through the late 1990s. He found the risk of autism increased after thimerosal had been removed from vaccines. By the late 1990s, when health officials had completely eliminated thimerosal, the number of children with autism was higher than it had ever been, exactly the opposite of what would have been expected if thimerosal caused autism. Stehr-Green concluded, “The body of existing data is not consistent with the hypothesis that increased exposure to thimerosal-containing vaccines is responsible for the apparent increase in the rates of autism.”
In September 2003, Kreesten Madsen, an epidemiologist from the University of Aarhus in Denmark, published a paper in Pediatrics . Madsen examined the medical records of 1,000 children diagnosed with autism between 1971 and 2000. Like Stehr-Green, he found that between 1992 and 2000, after thimerosal had been removed from vaccines in Denmark, the incidence of autism skyrocketed. Madsen concluded the data “did not support a correlation between thimerosal-containing vaccines and the incidence of autism.”
In October 2003, Anders Hviid, an investigator from the Danish Epidemiology Science Center in Copenhagen, published a paper in the Journal of the American Medical Association. Hviid studied the records of Danish children between 1990 and 1996, during which time thimerosal had been removed from vaccines. Like Madsen and Stehr-Green, Hviid found the number of children with autism increased after thimerosal had been eliminated. He concluded, “The results do not support a causal relationship between childhood vaccination with thimerosal-containing vaccines and development of autistic spectrum disorder.”
One year later, in September 2004, Jon Heron, an epidemiologist from the University of Bristol in the United Kingdom, published a study in Pediatrics. Heron examined the records of 14,000 children who had received different amounts of thimerosal in vaccines between 1991 and 1992. He wanted to see if he could find a relationship between the amount of thimerosal babies had received and the risk of neurological problems. He did. The more thimerosal children received, the less likely they were to be hyperactive or to have difficulties with hearing, movement, or speech. Heron, like Stehr-Green, Madsen, and Hviid before him, had found exactly the opposite of what parents concerned about thimerosal would have expected. He concluded, “We could find no convincing evidence that early exposure to thimerosal had any deleterious effect on neurological or psychological outcome.”
The same month Jon Heron published his study, Nick Andrews, an epidemiologist from the Communicable Disease Surveillance Center in London, also published a study in Pediatrics. Andrews examined the records of 100,000 children who had received different amounts of thimerosal. Like Heron, Nick Andrews found the more thimerosal children received, the less likely they were to develop neurological problems like attention deficit disorder. Again, the amount of mercury in vaccines didn’t presage the development of autism. Andrews concluded, “There was no evidence that thimerosal exposure via vaccines caused neurodevelopmental disorders.”
In 2004, after reviewing more than 200 epidemiological and biological studies of the relationship between thimerosal and autism, a committee of the Institute of Medicine (IOM) issued a statement to the press and the public: “The committee concludes that the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism. The committee further finds that potential biological mechanisms for vaccine-induced autism that have been generated to date are theoretical only.” The institute recommended that autism research dollars should be spent on more fruitful leads.
Two years later, Eric Fombonne, an epidemiologist at McGill University in Montreal, put another nail in the thimerosal-causes-autism coffin. Fombonne surveyed 28,000 children born between 1987 and 1998. During that time, babies could have received vaccines that contained anywhere from zero to more than 200 micrograms of thimerosal. Fombonne found that the group with the highest risk of autism had received no mercury. He concluded, “The findings ruled out an association between [autism] and high levels of thimerosal exposure comparable with those experienced in the United States.” Like researchers in Denmark, Canada, the United Kingdom, and the United States, Fombonne had found that the number of children diagnosed with autism in Canada had increased throughout the mid- to late 1990s. This increase occurred at the same time that thimerosal had been removed from vaccines. Obviously, removing thimerosal hadn’t caused the increase. But what had? Fombonne had an explanation: “Factors accounting for the increase include a broadening of diagnostic concepts and criteria, increased awareness and, therefore, better identification of children with [autism] and improved access to services.” In other words, Fombonne reasoned that there wasn’t an epidemic of autism; rather, broadening the definition of the disability to include mildly affected children, as well as heightened awareness among parents and doctors, had accounted for the increase.
In September 2007, Bill Thompson at the CDC published the most comprehensive and definitive study to date. Thompson carefully determined the exact amount of mercury that 1,000 children had received in vaccines and performed more than forty separate neurological and psychological tests. The study, which was published in the New England Journal of Medicine, took four years to complete. Its results were consistent with those of the other six: vaccines containing mercury hadn’t caused harm.
Finally, in January 2008, Robert Schechter and Judy Grether from California’s Department of Public Health took a closer look at the rates of autism from 1995—six years before thimerosal had been removed from vaccines—to 2007, six years after it had been removed. They found what everybody else had found: the rates of autism continued to increase. In an accompanying editorial titled “Thimerosal Disappears but Autism Remains,” Eric Fombonne wrote, “Parents of autistic children should be reassured that autism in their child did not occur through immunizations.”
THOSE WEDDED TO THE NOTION THAT THIMEROSAL CAUSED AUTISM were furious. They declared the epidemiological studies meaningless and were sickened that the IOM had been persuaded by them. What really mattered, they said, were the biological studies, like those of Richard Deth and his laboratory cells and Mady Hornig and her mice. On NBC’s Meet the Press, David Kirby, now a spokesman for the cause, said: “You need to look at the biology, the toxicology; you need to look at the cellular level. Virtually half of the evidence that was presented [to the IOM] against the theory [that thimerosal caused autism] was epidemiological. The other half supporting the theory was largely biological. And yet the committee gave a preponderance of emphasis to the epidemiological evidence and rather, I would say, gave short shrift to the biological evidence.”
Kirby had underestimated the power of epidemiological studies.
ALTHOUGH VACCINES HAVE PROBABLY SAVED MORE LIVES THAN any other medical intervention, they have come with a price—occasionally causing severe, even fatal, side effects. Epidemiological studies have been the single most powerful tool to show that vaccines, like all medicines, are imperfect.
In 1998, the FDA licensed a rotavirus vaccine, and the CDC recommended it for all infants. The vaccine, designed to prevent a common cause of fever, vomiting, and diarrhea, had been tested in 10,000 babies before licensure. But after it had been given to 1 million babies, the vaccine was found to be a rare cause of intestinal blockage called intussusception. The problem wasn’t trivial. Babies with intussusception can die when bacteria from the intestine enter their bloodstream, or they can die when blood vessels in the intestine are damaged, causing massive bleeding. Epidemiological studies showed rotavirus vaccine caused intussusception in about one of every 10,000 babies who got it. Of the 1 million children who had received this vaccine, 100 suffered intussusception, and one died. Within months of the vaccine’s release, the CDC had discovered the problem and withdrew its recommendation—a testament to CDC diligence and post-licensure surveillance. The CDC’s quick and decisive response to the problem with the first rotavirus vaccine belied accusations that it couldn’t be trusted to determine whether vaccines were safe.
The rotavirus vaccine experience was just one example of the power of epidemiological studies. Natural measles infection occasionally causes the number of platelets (cells in the bloodstream necessary for clotting) to decrease. The disorder, called thrombocytopenia, can be quite serious, occasionally causing life-threatening bleeding. Measles vaccine also can cause temporary thrombocytopenia, albeit rarely, in about one of every 25,000 vaccinated children. Investigators unearthed this rare problem with measles vaccine using a series of powerful epidemiological studies. In 1976, public health officials in the United States, fearing that an unusual outbreak of influenza among soldiers at Fort Dix (New Jersey) signaled the start of the next influenza pandemic, immunized millions of Americans with what was called the swine flu vaccine. Unfortunately, some people immunized with the vaccine developed a rare form of paralysis called Guillain-Barré Syndrome. Epidemiological studies showed that the vaccine was the cause. One of every 100,000 people who got swine flu vaccine—400 people among 40 million—had been afflicted.
Problems caused by vaccines as rare as one in 10,000, one in 25,000, or one in 100,000 have been readily detected by epidemiological studies. If autism, a disease that affects one of every 150 American children, was caused by thimerosal, epidemiological studies would have detected it. Indeed, even if thimerosal in vaccines accounted for only 1 percent of autism—one in 15,000 children—epidemiological studies would have found it. Instead, after examining the records of hundreds of thousands of children, investigators working in both North America and Europe couldn’t find any evidence of a relationship between thimerosal and autism. It wasn’t that their studies were poorly designed or that they had been part of a vast international conspiracy to hide the truth. They couldn’t find a relationship because it wasn’t there to be found.
WHEN DAVID KIRBY HAD PLEADED WITH TIM RUSSERT ON MEET the Press to dismiss epidemiological studies in favor of laboratory studies, he was asking for science-in-reverse. Typically, scientists determine that something is a problem (by doing epidemiological studies) before determining why it is a problem (by studying its effects in the laboratory). That’s because studies in animals and cells can be quite misleading. For example, in the 1950s, researchers found that hamsters injected with SV40—a monkey virus that had inadvertently contaminated early lots of polio vaccine—developed large tumors under their skin. Some of these tumors were so big they weighed twice as much as the hamsters. But many epidemiological studies performed during the past fifty years have clearly shown that SV40 virus doesn’t cause cancer in people. Studies in hamsters, although frightening, weren’t predictive. In the 1960s, researchers found that hamsters injected with adenovirus—a virus that causes colds, pneumonia, and bronchitis in people—got cancer. If these hamster studies were revealing, then people infected with adenovirus should be at higher risk for cancer. But they’re not. In the 1970s, researchers showed that laboratory cells exposed to large amounts of formaldehyde became cancerous. But people who work with formaldehyde, like morticians who use it to preserve dead bodies, aren’t at greater risk of cancer. And everyone has small amounts of formaldehyde circulating in the bloodstream, the result of a natural process called single-carbon metabolism.
In each of these cases, biological studies of animals didn’t predict what was happening in people. Laboratory studies can also work the other way; instead of sounding a false alarm, they have been falsely reassuring. For example, in the 1950s, researchers were interested in making a vaccine to prevent polio. The vaccine, pioneered by Jonas Salk, was made by inactivating polio virus with formaldehyde. After it was licensed, five companies stepped forward to make it. One company, Cutter Laboratories of Berkeley, California, made it badly. Because Cutter hadn’t completely inactivated its vaccine, more than 100,000 children were inadvertently injected with live, dangerous polio virus. Seventy thousand got mild polio, 200 were permanently paralyzed, and ten were killed. It was one of the worst biological disasters in American history. Before releasing its vaccine, Cutter had tested it extensively in cells, mice, and monkeys to make sure it didn’t contain live polio virus. But the laboratory studies had been falsely reassuring. Edwin Lennette, the director of the Virus Laboratory for the State of California and one of the country’s leading virologists, stated the obvious: “The only way to determine whether something is a problem in people is to test it in people.”
A more recent example can be found in Merck’s HIV vaccine trial, suspended in November 2007. The vaccine, which had been remarkably effective in mice and monkeys, failed miserably when tested in people. Echoing the words of Edwin Lennette, Peggy Johnston, director of the AIDS Vaccine Program at NIH, said, “Mice lie, monkeys sometimes lie, and humans never lie.”
Cigarette smoking is another example of how David Kirby’s plea for science-in-reverse can be misleading. In 1939, Alton Ochsner, a cancer surgeon in Louisiana, was the first to propose that cigarette smoking caused lung cancer. Researchers tried to prove Ochsner’s theory in laboratory animals, but results were inconclusive. Studies in people told a different story. In the early 1950s, two epidemiological studies, one published in the Journal of the American Medical Association and the other in the British Medical Journal, clearly showed that people who smoked cigarettes were at greater risk of lung cancer—and the more they smoked, the greater the risk. Tobacco industry representatives refused to believe it, reasoning that because epidemiological studies were only “statistical,” they didn’t prove anything. The truth, they claimed, lay in laboratory studies (which had been inconclusive), not in epidemiological studies (which had been damning). But Bradford Hill, the lead investigator on the British study, disagreed: “In this particular problem, what experiment can one make? We may subject mice or other laboratory animals to such an atmosphere of tobacco smoke that they can—like the old man in the fairy story—neither sleep nor slumber. And lung cancer may or may not develop to a significant degree. What then? We may have strengthened the evidence, but we must, I believe, invariably return to man for the final proof.” Further epidemiological studies consistently showed that although lung cancer caused by cigarette smoking was rare, affecting less than 1 percent of those who smoked, it was real. The results of these epidemiological studies no longer allowed an industry that wished to believe smoking didn’t cause cancer to hide behind laboratory studies that had proved worthless.
EPIDEMIOLOGICAL STUDIES AREN’T THE ONLY EVIDENCE THAT EXONERATES mercury as a cause of autism. Understanding how mercury moves through the environment also revealed why thimerosal is an unlikely culprit.
Mercury is part of the earth’s surface, released into the environment by burning coal, rock erosion, and volcanoes. After it is released, it settles onto the surface of lakes, rivers, and oceans where it is converted by bacteria to methylmercury. Methylmercury is everywhere—in the fish we eat, the water we drink, and the infant formula and breast milk we feed our babies. There is no avoiding mercury.
Because everyone drinks water, everyone has small amounts of methylmercury in their blood, urine, and hair. A typical breast-fed child will ingest almost 400 micrograms of methylmercury during the first six months of life. That’s more than twice the amount of mercury than was ever contained in all vaccines combined. And because the type of mercury in breast milk (methylmercury) is excreted from the body much more slowly than that contained in vaccines (ethylmercury), breast milk mercury is much more likely to accumulate. This doesn’t mean that breast milk is dangerous, or that infant formula is dangerous, or that water is dangerous. Not at all. It means only that anyone who lives on the planet will consume small amounts of mercury all the time. During legislative hearings to ban mercury-containing vaccines, some politicians have stood up and said: “I have zero tolerance for mercury.” This kind of statement makes for a great sound bite. But because mercury is an inescapable part of our environment, politicians with zero tolerance for it are going to have to move to a different planet.
Studies of mercury in vaccines showed why the amount of a substance is important when determining whether it is harmful. But mercury isn’t the only example of this. The earth contains other heavy metals such as lead, cadmium, arsenic, beryllium, and chromium. Large amounts of any of these metals can be toxic, but very small amounts of them are found in most people. The quantity factor also works the other way: large amounts of nontoxic substances can be harmful. For example, sometimes people working in the sun drink gallons of water during the day to replace the fluids they’ve lost while sweating. But if the water doesn’t also contain the minerals they’ve lost (like sodium), then minerals in the blood can be dangerously depleted, causing seizures. This doesn’t mean water is toxic to the nervous system. It only means that if large amounts of water are ingested quickly, it can be dangerous. (Water intoxication drew national attention on January 12, 2007, when Jennifer Lea Strange, a mother of three, died after drinking two gallons of water as part of a radio promotion in Sacramento, California, called “Hold Your Wee for Wii.” Two years earlier, a Chico State student died of water intoxication during a hazing.) The first person to recognize the relationship between dose and danger was the chemist Paracelsus, who early in the sixteenth century declared, “The dose makes the poison.”
The thimerosal-causes-autism theory didn’t make sense for other reasons. Lyn Redwood and Sallie Bernard had argued that symptoms of mercury poisoning were indistinguishable from symptoms of autism. But Karin Nelson, a neurologist from NIH, and Margaret Bauman, a neurologist from Harvard Medical School, showed these two disorders were in fact quite different. Children with mercury poisoning suffer narrowing of their field of vision, whereas children with autism don’t have visual problems. Children with mercury poisoning can become severely psychotic, whereas children with autism, although socially aloof, aren’t psychotic. Children with mercury poisoning have heads that are smaller than normal, whereas children with autism have heads that are larger than normal. Nelson and Bauman concluded, “The typical clinical signs of [mercury poisoning] are not similar to the typical signs of autism.” Consistent with the findings of Nelson and Bauman, children in Minamata Bay who had suffered neurological damage from mercury poisoning didn’t have a greater risk of autism.
IN THE FACE OF OVERWHELMING EVIDENCE ABSOLVING MERCURY in vaccines, one parent advocacy group did what its predecessor had done during the breast implant litigation: it hired Fenton Communications to manage the media.
On June 8, 2005, after five studies exonerating thimerosal had been published, J. B. Handley’s Generation Rescue hired Fenton to design a full-page advertisement to be published in the New York Times. The ad, which cost more than $150,000, bore a title in bold, one-inch-high letters: “MERCURY POISONING AND AUTISM: IT ISN’T A COINCIDENCE.” The ad featured several quotes from prominent politicians. Senator John Kerry: “Mercury has been linked to autism.” Congressman Dan Burton: “Numerous scientists have testified and presented credible, peer-reviewed research studies that indicated a direct link between exposure to mercury and autism.” Congressman Dave Weldon: “Mercury is a neurotoxin. And, in the 1990s, children, infants, and unborn children were exposed to significant amounts of mercury at the most critical point of their development.” And Senator Joe Lieberman: “I think parents have a just cause, and I don’t care how many respected institutions are on the other side. This is a fight worth fighting.” One year later, on April 6, 2006, Generation Rescue hired Fenton to design another full-page advertisement to be published in USA Today. The ad, which cost $100,000, was boldly titled “IF YOU CAUSED A 6,000% INCREASE IN AUTISM WOULDN’T YOU TRY TO COVER IT UP, TOO? Under the headline was a quote from Robert F. Kennedy Jr.: “It’s time for the CDC to come clean with the American public.”
WHILE SOME PARENTS WAGED WAR ON STUDIES EXONERATING vaccines by placing advertisements in newspapers, others tried to limit their impact by threatening the scientists who had performed them, the journalists who believed them, and the public health officials who trumpeted them.
Sarah Parker is an assistant professor of pediatrics at the University of Colorado. After she wrote an article criticizing the Geiers’ epidemiological studies—and later appeared on a local radio program to debate David Kirby—she received a series of threatening e-mails and phone calls. “They would say that you need to retract this paper immediately, or else,” recalled Parker. “They would say, ‘Don’t you have children of your own?’ in a way that was just very aggressive, very frightening.” Fearing for the safety of her eighteen-month-old daughter, Parker called the police to obtain a restraining order on one particular caller. “My impression after talking to the police [was that the callers] seemed to be very well trained in not using the words that would get them in trouble with the law. So, they wouldn’t make a direct threat, saying, ‘I’m going to hurt you’ or ‘I’m going to hurt your children.’ They wouldn’t tell me what the ‘or else’ was. [But] I was worried that they were going to do something to my family. I quit answering my phone for about a year.” The threats worked. Sarah Parker never published another paper on vaccine safety. “I’m interested in vaccine safety,” she says, “but I’m not sure how much I would want to publish [and have to] live with those weekly threats.”
The IOM was also a target. Marie McCormick, a professor of maternal and child health at Harvard’s School of Public Health, was the head of the committee that found no relationship between vaccines and autism. “We were expecting trouble,” said McCormick. “There had been e-mail threats concerning one of the speakers and one of the staff so that we actually changed the venue of the meeting [to] an auditorium where the committee could leave the meeting room without going through the audience. The committee was urged to stay in the same hotel. They all came on a single bus and were driven into the garage under the [National Academy of Sciences] building and went directly to the meeting room. Given the level of the threats, security was clearly beefed up. And one of the committee members resigned in what he described as a low probability-high [impact] threat.”
On December 29, 2003, Kim Strassel, a member of the editorial board of the Wall Street Journal, wrote about the politics of autism. The editorial mentioned that science had begun to refute the notion that thimerosal caused autism. Strassel remembered what happened next. “A woman called our office,” she said. “She was very pleasant. But her goal wasn’t to talk to me about the editorial. It wasn’t to try to convince me or argue with me. It was to confirm that I was the person who had written it. The next thing I knew my name and my contact details had been published on the Internet and circulated to these parents groups. They wanted to put my name and details out so that there could be a direct assault on a person. They want people. They want names and faces.” Soon, Strassel was besieged with threatening e-mails and phone calls. “There were a couple [of e-mails] that suggested that if I had a child, I better hope that I took good care of him. I didn’t have children then. [But] it’s the most awful threat that someone can make to someone else. I figured I could look after myself. But you leave your kids. You drop them off places. They’re not under your constant supervision. It’s a very scary threat.” Strassel is circumspect about the experience. “I’m in the business of editorial writing,” she said. “Editorial writing inspires great passions among people, and if you don’t have a thick skin, then you shouldn’t be in this business. I’m very used to people telling me that I’m wrong or that I’m stupid or unethical. But I’ve never had a situation where people claimed that I was killing their children, where people were suggesting that I was part of some grand conspiracy between politicians and corporations to ruin their lives. And I never had anyone suggest to me that I should worry about my own family.”
The CDC also received a series of threatening e-mails. One stated, “Forgiveness is between you and God. It is my job to arrange a meeting.” Another lamented, “I’d like to know how you people sleep straight in bed at night knowing all the lies you tell and the lives you know full well you destroy with the poisons you push.” The CDC contacted the FBI, instructed its staff on safety issues, hired more security guards, and showed employees how to respond if pies were thrown in their faces. “It’s like nothing I’ve ever seen before,” said Melinda Wharton of the CDC’s National Immunization Program.
Threats from parents weren’t limited to the United States. At the peak of the MMR-autism controversy in England, David Salisbury, the director of immunization for the Department of Health, suffered a similar incident. “I had a letter that came to work that said ‘If I ever see you on television defending vaccines, I will come and find you.’”
ALTHOUGH SOME PARENTS HAVE BEEN SKEPTICAL OF THE SCIENTISTS and public health officials who failed to find that vaccines caused autism, questioning their motives and occasionally threatening them, they haven’t been similarly skeptical of the vast array of autism therapies, all of which are claimed to work and all of which are based on theories that are ill-founded, poorly conceived, contradictory, or disproved.
Dan Burton’s Committee on Government Reform and conferences hosted by groups such as Autism One, Defeat Autism Now, and the MIND Institute have provided a venue for those who offer the latest and best cure for autism. For example, Vijendra Singh claimed vaccines caused an immune response against the sheath that lines nerve cells, arguing that drugs like steroids, which decrease inflammation, could treat autism. (Autistic children don’t have inflammation of their nerve sheaths.) Mary Megson claimed cod liver oil, which contains vitamin A, extended the field of vision of autistic children. (Autistic children don’t have a restriction of their visual fields.) John Upledger claimed spinal fluid was getting trapped in the brains of autistic children and causing increased pressure. He said he could relieve the pressure by cranial manipulation. (Autistic children don’t have increased pressure on their brains.) Mark and David Geier claimed autistic children had more mercury in their bodies than nonautistic children and getting rid of it by chelation therapy could help. (Autistic children don’t have excess mercury in their bodies; cells damaged by heavy metals aren’t healed by chelation, and no well-performed study has ever shown chelation treats autism.) Stephen B. Edelson, director of the Edelson Center for Environmental and Preventive Medicine, claimed he could treat autistic children with high-intensity sound waves, calling his miraculous new therapy sonar depuration. (Sonar depuration therapy has never been formally tested.) Edelson said sonar depuration helped damaged brain cells to regenerate: “A classic example is you can take a six-year-old, remove half their brain, and within two years the child will be perfectly normal.” (Children who lose half their brains don’t grow them back.) Paul Harch, president of the International Hyperbaric Medical Association, said autistic children weren’t getting enough oxygen to their brains and that hyperbaric oxygen yielded dramatic results. Now he was ready to test his revolutionary new therapy. “Before I get started, I wanted to make an announcement,” said Harch. “The International Hyperbaric Medical Association and the American Board of Clinical Medical Toxicology as well as the Oklahoma University Health Science Center and School of Medicine are going to conduct the first evidence-based medicine study on the only two effective therapies that have been identified for autism: hyperbaric oxygen therapy and chelation therapy.” (If Harch was about to perform the first study of these two therapies, how did he know they were effective?) “This is the only study that will address two of the major underlying problems with the majority of autism cases; and we’re going to prove it in the next three years.” (Three years have passed.)
It gets worse. Rashid Buttar, an osteopathic physician in North Carolina, prescribes a chelation medication called TD-DMPS, which is rubbed on the skin. TD-DMPS isn’t licensed by the FDA for use in children, has never been formally tested in children, and has never been shown to cause the excretion of heavy metals. Buttar, who also injects children with filtered urine, is now the subject of a disciplinary action. He isn’t alone in such quackery. Another doctor offers “RNA drops” at $100 a bottle. (RNA is completely degraded by enzymes the moment it touches the skin or tongue.) The “body ecology diet” proffers fermented foods, such as kimchee, sauerkraut, and kefir. Others recommend camel’s milk; “foot-soaking machines”; laser therapy; bacteria-containing nasal sprays; pig whipworm eggs; and baths in magnetic clay, claiming the small black flecks left in the bathwater are tiny bits of metal pulled from the body. And for parents willing to travel to Mexico, Costa Rica, or China, the promise of stem-cell transplantation awaits.
But by far the most extensive network of physicians offering alternative therapies for autism belongs to Defeat Autism Now (DAN), a group based in San Diego and part of the Autism Research Institute. Like Andrew Wakefield, DAN practitioners believe autism is caused by toxic substances that enter the body through a leaky gut. (Studies have failed to prove that autistic children have leaky guts, and brain-damaging toxins have never been identified.) Their three-pronged approach to treating autism includes removing substances that could damage the gut, reinoculating the gut with healing bacteria, and repairing the gut with nutrients. At DAN conferences, held twice a year on the East and West Coasts, this therapeutic approach is referred to as “the three R’s”: remove, reinoculate, and repair.
Before DAN therapies can begin, children must undergo a daunting array of tests, which may include a complete blood count; hemoglobin, hematocrit, and liver function tests; urinary function tests; or blood tests of ammonia, organic acids, iron, amino acids, metals, and metallothioneins. Additional tests may include urinary analyses for specific peptides; stool analyses to detect yeast, harmful bacteria, parasites, fat, chymotrypsin, acid, and meat and vegetable fibers; and blood tests to detect food allergies and previous infection with viruses such as measles, mumps, rubella, Epstein-Barr virus (mononucleosis), and cytomegalovirus.
As in the case of laboratory tests, autism therapies are diverse, expensive, and unproven. To eliminate yeast overgrowth, autistic children may receive fluconazole, nystatin, and amphotericin B; to reduce harmful bacteria like clostridia, metronidazole. To reinoculate the gut, children may swallow microorganisms such as Lactobacillus acidophilus, Lactobacillus rhamaonse, Sacchromyces boulardis, Bifidobacter bifidum, and Streptococcus thermophilus. Finally, to restore the gut, children may be fed or injected with various combinations of vitamins (B1, B6, B12, C, and E); minerals (magnesium, zinc, and calcium); folate; amino acids; fatty acids and ketoglutaric acid; di- and trimethylglycine; taurine; melatonin; immune globulins; creatine; digestive enzymes; glutathione; carnitine; carnosine; cod liver oil; activated charcoal; or colostrum (human milk).
But of all the alternative therapies proposed by DAN practitioners, none is more pervasive than diets free of casein (dairy products) and gluten (wheat, barley, and rye). These diets were first proposed in the early 1980s by a Norwegian biochemist, Kalle Reichelt. Reichelt believed that he had found abnormal protein fragments (called peptides) in the urine of patients with autism and schizophrenia—peptides that resulted from the incomplete breakdown of grains and dairy products. Reichelt’s findings didn’t stand the test of time. Several other groups of scientists, using sophisticated techniques like high-performance liquid chromatography, have consistently failed to find what Reichelt found. Unfortunately Reichelt’s elimination diets haven’t been eliminated. And they’ve come with a price. A recent study by NIH and Cincinnati Children’s Hospital Medical Center found that autistic children deprived of calcium and vitamin D in dairy products developed osteoporosis, a dangerous thinning of the bones.
Tests and treatments recommended by DAN are often expensive, costing thousands and sometimes tens of thousands of dollars. And because the tests are seldom covered by medical insurance, parents pay for them out-of-pocket. Some tests, such as those for stool analysis, urinary peptides, organic acids, and amino acids, are often performed only by special laboratories working in concert with DAN. Because many physicians don’t believe DAN tests and treatments are useful, the Autism Research Institute lists on its Web site the names and locations of clinicians who do, calling them DAN doctors. It’s a cottage industry of false hope.
About 300 DAN doctors practice in the United States. Although they often tout their treatments as harmless, they may not be. Vitamin B6 injections can damage nerves, and excess vitamin A can damage the liver and cause a buildup of pressure on the brain. Many DAN doctors have been disciplined by their state medical boards for practicing medicine unethically or illegally, and several have had their medical licenses suspended or revoked. Two DAN doctors have been censured for injecting hydrogen peroxide intravenously.
Despite the poor foundation on which alternative therapies are built, some parents claim dramatic results. How is this possible? How is it possible that so many different therapies based on so many different theories could work? The answer lies in the study performed by researchers in North Carolina who determined whether secretin—the intestinal hormone first touted by Victoria Beck—treated autism. Autistic children injected intravenously with secretin were judged by their parents to have improved, but so were children who had been injected with salt water. This didn’t mean that both secretin and salt water treated autism; it meant that parents who had participated in the secretin study had a strong desire to see medicines make their children better. Parents not only had an emotional investment in the idea that secretin worked, they also had a financial investment, some having spent thousands of dollars to obtain the drug. Secretin has now fallen out of favor. But chelation, Lupron, sonar depuration, cranial manipulation, laser therapy, camel’s milk, magnetic clay, and hyperbaric oxygen are no different. Parents want to believe these therapies work because they desperately want their children to get better; they don’t want to watch them struggle anymore. But if all of these therapies are ever carefully tested, they will likely meet the same fate as secretin.
WHILE SOME PARENTS HAVE CONTINUED TO BELIEVE IN ALTERNATIVE therapies, others haven’t. Sharon Humiston, a doctor from Rochester, New York, told Dan Burton’s committee, “The worst day of my life was not the day the developmental pediatrician told me, almost apologetically, that my son [Quinn] was autistic. The worst day came later when the specialists told me that Quinn’s progress was minimal after a year and a half of intense [behavioral] therapy, and that this made his prognosis grave. My family’s response was very typical. We reached out and embraced a succession of therapies, each touted as a lifesaver. We heard that gluten allergy was the cause, and we changed Quinn’s diet. Later, we tried a phenol-free diet, megavitamins, anti-yeast medications, and cranio-sacral massage. Each therapy was supposed to get at the cause of Quinn’s autism. Each was expensive, and each was a failure.”
Jim Laidler, a physician, wrote an article describing the seduction of alternative therapies: “I consider myself to be a very scientific person. While growing up, I was skeptical and inquiring and naturally gravitated to the sciences. My first brushes with pseudoscience and quackery in medical school left me convinced that it would never happen to me. I was wrong. A year or so after my [younger] son was diagnosed with autism—with no hope for a cure in sight—I was feeling desperate for anything that might help him. My wife attended a conference about biological treatments for autism. She came back extremely excited, having heard story after story about hopeless cases of autism cured by a variety of simple treatments. I was initially skeptical, but my desperation soon got the better of me. We started out with simple therapies—vitamins and minerals—but soon moved on to the ‘hard stuff’: the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was hooked on hope, which is more addictive and dangerous than any street drug. [But] the beginning of the end was when my wife—suspecting that some of the supplements we were giving our older son [who also has autism] weren’t having any effect—stopped them all without telling me. I saw no difference, even after two months, when she finally told me. We had been chasing our tails, increasing this and decreasing that in response to every change in his behavior—all the while his ups and downs had just been random fluctuations. My eyes began to open. The final step in my awakening came during a Disneyland vacation. My younger son was still on a gluten- and casein-free diet, which we swore had been a significant factor in his improvement. We had lugged at least forty pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the ‘experts’ told us would inevitably occur. The results were astounding—absolutely nothing happened. I began to expect that I had been very foolish. In the following months, we stopped every treatment except speech and occupational therapy for both boys. They did not deteriorate and, in fact, continued to improve at the same rate as before—or faster. Our bank balance improved and the circles under our eyes started to fade. And, quite frankly, I began to get mad at myself for being so gullible and for misleading other parents of autistic children. Looking back on my experiences with alternative autism therapies, they seem almost unreal. Utter nonsense treated like scientific data, people nodding in sage agreement with blatant contradictions, and theories made out of thin air and unrelated facts—and all of it happening right here and now, not in some book. Real people are being deceived and hurt, and there won’t be a happy ending unless enough of us get together and write one.”
IN JANUARY 2008—SIX YEARS AFTER THIMEROSAL HAD BEEN REMOVED from vaccines given to young infants in the United States—health officials from California announced the state’s most recent rates of autism. Because children with autism were typically diagnosed between three and five years of age, six years of thimerosal-free vaccines should have been enough time to see whether the rates of autism had decreased. They hadn’t. The short-lived trend downward in 2004 had been falsely interpreted. In fact, the rates were increasing—dramatically. The grand experiment had been performed, and the results were clear. Robert Davis, then head of the Immunization Safety Office at the CDC, stated the obvious: “If you remove cars from the highways, you’ll see a marked decrease in auto-related deaths. If thimerosal was a strong driver of autism rates and you remove it from vaccines, [researchers] would have seen some sort of decline—and they didn’t.”
WHEN DAVID KIRBY WROTE EVIDENCE OF HARM, HE CLAIMED TO be a journalist interested in getting at the truth. He said that he didn’t have a dog in the hunt; as a journalist, he couldn’t. Now Kirby faced eight epidemiological studies that disproved the notion that thimerosal caused harm and the clear and simple fact that removal of thimerosal from vaccines hadn’t even slowed the number of children being diagnosed with autism. With all of this evidence in hand, many leading national and international organizations interested in the health and well-being of children declared vaccines hadn’t caused autism. Reasonably, Kirby should have taken a step back, looked at the data, and declared his hypothesis disproved. Other journalists had done exactly that. In his New York Times Magazine article, Arthur Allen was one of the first journalists to alert the public about the possibility that vaccines caused autism. But as Allen read the epidemiological studies and followed the California autism rates, he gradually became convinced thimerosal didn’t cause autism. “The data were just really clear,” he said.
Kirby, on the other hand, refused to admit defeat. On November 11, 2006, he descended into parody. Before an audience of parents of children with autism in San Diego, Kirby, during a debate with Arthur Allen, offered another explanation. Obviously, vaccines weren’t the only problem. Kirby claimed that children were getting autism because China was burning more coal, causing plumes of mercury-filled smoke to envelop the West Coast; to prove it he showed slides labeled “Shanghai Plume” and “Mongolian Plume.” Kirby also noted an increase in California wildfires which, he reasoned, had caused more mercury to be released into the environment. But Chinese coal and forest fires weren’t the only problems. Kirby also believed autism in California had been caused by an increase in cremations, resulting in the release of mercury from dental fillings. A few months later, the CDC announced that the rates of autism in the United States were the highest they had ever been. Kirby had tried to explain an increase in California autism rates using his Chinese smoke-California wildfires-cremation hypothesis. But he was hard-pressed to use this same hypothesis to explain why national rates of autism were increasing. Arthur Allen remembered the debate: “He just came up with this wild stuff. In this case a plume of mercury-containing vapor from China had descended on southern California. How can you debate that? It’s just patently ridiculous.”
In June 2007, Participant Productions, facing overwhelming evidence that vaccines didn’t cause autism, stopped production on the movie version of Evidence of Harm.
KIRBY’S PERSISTENT PORTRAYAL OF AUTISTIC CHILDREN AS VACCINE-DAMAGED angered some parents. They didn’t see autistic children as poisoned by anything and were disappointed by parents who had paraded their children at marches on the Capitol or at protests in front of the CDC with T-shirts reading “Damaged by Mercury.”
Perhaps the most passionate and persuasive defender of autistic children from the damaged-by-mercury label is Kathleen Seidel from Peterborough, New Hampshire: a librarian, author, and creator of the Web site neurodiversity.com. “I get really angry at those who work parents up into a nasty emotional state,” said Seidel. “I just think it’s destructive to be led down this path of endless recriminations that goes with being encouraged to think that kids are autistic because they’re damaged.” In response to what Seidel described as the “rampant hostility and cynicism and suspicion and conspiracy theorizing that I saw happening on the Evidence of Harm listserv,” on May 29, 2005, she sent a letter to David Kirby, urging him to see the effect he has had: “[I want] to encourage you to consider how it feels for an autistic person to hear incessant, gruesome, emotionally charged de-scriptions of autism by non-autistic individuals who regard autism as an unmitigated tragedy, as completely unacceptable; descriptions that insist that an autistic person’s experience of the world is a consequence of poisoning, and whose cognitive and behavioral peculiarities are worthy of total eradication. I hope that you will consider that when you make public statements about autism you are presuming to speak about an entire class of people who are autistic for life, not simply the subset of parents and minor children with whom you’ve become acquainted over the past couple of years. For every parent eager to ‘recover’ their child and ‘lose the diagnosis,’ there are autistic citizens who will always have the diagnosis and will always wear the label; and who are affected by the manner in which that label is bandied about by those who hate what it represents to them. People too often talk about ‘autism’ as if it is separate from autistic people. It is not. And those autistic people and their families—autistic children, the autistic-spectrum adults whose very existence you have questioned, and families like mine—will still be around, still dealing with the stigma of ‘contamination’ that you have helped to promulgate, long after the royalties dry up and you have sailed off to your next journalistic destination.”
Demonstrators protest the use of mercury in vaccines during a march on the U.S. Capitol, July 20, 2005 (courtesy of Getty Images).
In the end, it was Kathleen Seidel who pulled back the curtain, revealing untold motives and unsavory relationships among those who had trumpeted the notion that mercury caused autism—and exposing a much darker place.