The Panic Virus

by Seth Mnookin; Dan B. Miller

  But by the middle of the decade, the autism advocacy movement had begun to resemble other burgeoning insurgencies throughout history whose rapid growth had put them at risk of breaking apart. If a truce was going to be reached, it would have to be brokered by someone with political skills, celebrity cachet, and the ability to raise enough money to make all other concerns seem minor in comparison.

  Katie Wright’s son, Christian, was born on August 31, 2001, and his heartbreaking story resembles that of so many other parents around the world. “He developed typically until he was two and a half years old,” Katie says. “He’d say, ‘I love you, Mommy’ and ‘When do I get to drive the car’—all of that,” she says. “He’d get excited when my mom came and he’d run down the driveway.” Then, in what felt like an instant, the little boy Katie had known and loved simply disappeared. “Within a few months, he lost all of his skills, he became completely nonverbal,” Katie says. “He didn’t even recognize me anymore.”

  In February 2004, Christian was diagnosed with autism. If anything, the next several months were even worse than the previous ones had been, as Christian developed a host of physical problems that were every bit as pressing as his cognitive deficits: “He was having ten bowel movements a day,” Katie says. “The skin was coming off of his backside. It burned through the carpet. It was just gross, and nobody could do anything.” When his pain got especially bad, Christian would descend into violent, uncontrollable tantrums during which he’d throw himself against the floor. In those moments the only thing that would pacify Christian was milk—and before long he was drinking a dozen bottles a day. Less than a year earlier, Christian would use the phone to pretend to call his grandmother. Now he was so sick that his mother couldn’t even get a good night’s sleep.

  In the year following Christian’s diagnosis with autism, Katie and her husband, Andreas Hildebrand, traveled a disheartening path. They made appointments with specialists in “four or five different states,” all to no avail. It was particularly frustrating, Katie says, when one high-paid doctor after another refused even to consider whether Christian’s physical illness and his autism might be intertwined. “They didn’t connect them,” she says. “They were asking my husband and I if we were related, if mental illness ran in my family, and I’m like, Can you talk about what’s going on now? My husband and I aren’t related. You’re just barking up so many wrong trees.” In desperation, Katie scheduled Christian for an endoscopy, but even that didn’t provide any clues as to why he was in so much pain.

  Katie and Andreas’s inability to help their son did not mean that the Wright family was completely powerless: As the vice chairman and executive officer of General Electric and the chairman and CEO of NBC-Universal, Katie’s father, Bob Wright, was one of the few people with the standing and influence to change the direction and the future of autism research. To that end, in February 2005, the Wrights announced they were starting a charity called Autism Speaks. “Too many parents go to bed each night praying that one day their child will look them in the eye, smile and say, ‘Mommy,’ ” Suzanne Wright wrote in a Newsweek essay. “My daughter is one of them. My husband and I are launching Autism Speaks for her and for all the families stricken by the disorder.”

  From the outset, the Wrights made clear that one of their goals was to put together a “big tent” coalition as a way of stopping the internecine warfare that threatened to cripple the autism advocacy movement. Within a matter of months, they appeared to have made significant progress: That November, NAAR merged with the new charity, a move both sides said would allow them to continue their “joint commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders.” Within a year, a similar “consolidation” took place between Autism Speaks and CAN, which had by that point become another group that supported the vaccine theory. Statements detailing the moves described them in virtually identical language: Each merger signified “the tipping point in the autism community, bringing together the best science, collaborative minds and impassioned advocates.” In both arrangements the mergers could have more accurately been described as a swallowing up of the more established organization. The result was a mega-charity called Autism Speaks in which the president of Autism Speaks retained his position and Bob and Suzanne Wright continued in their roles as chairman and vice chair of the group’s board.

  To outsiders, those moves may have appeared to unite different factions for the sake of a greater good. To anyone fluent in the vocabulary of the autism world, however, it was apparent that the old divisions remained. In a press release announcing the CAN merger, Sallie Bernard, who was by then a CAN board member, made sure to signal that the new partnership would only improve CAN’s ability to “creat[e] a network of parents, bonded by hope.” Commenting on the newly expanded version of Autism Speaks, Eric London struck an equally independent note: “Our commitment to funding evidence-based science will always be our top priority.”

  It wasn’t long before there were indications that London’s promise had been made in vain: Former members of CAN outnumbered NAAR loyalists on the Autism Speaks board, and at a high-profile fund-raiser featuring Bill Cosby and Tom Brokaw, Bob Wright surprised the audience by announcing that the entire $1.4 million raised at the gala would go toward “environmental” research. But the biggest concern for those who wanted to move beyond the vaccine wars were the rumors that Katie Wright had come to believe vaccines had caused her son’s autism—and that she was pressuring her parents to recalibrate the research priorities of Autism Speaks accordingly.

  Katie Wright’s introduction to the parent-led movement dedicated to nontraditional ways of thinking about autism occurred during a period in which she had all but given up hope for the future. “The child I knew [was] gone,” she says. “So you have that, and then you have the lack of services, and you couple that with a feeling like there’s no sense of urgency [to find effective treatments].” She was also suffering from a growing feeling of isolation. “I have a lot of friends in the city who have autistic kids,” she says. “But not too many who have kids that are as severely impacted as mine.” Whenever she would ask for advice, Katie says, “They would be like, ‘I don’t know—I don’t know and that has nothing to do with my son.’”

  The one place where Katie did find parents with experiences similar to her own was online. “So many of us, especially in the beginning, we can’t leave our homes and the only time you have to seriously do research or discuss this is the middle of the night,” she says. “You can’t go to a doctor or leave your home—so yeah, it was so great for me, for sure . . . to find [other parents] in all parts of the country. It was so helpful.”

  Then, toward the end of 2005, Katie’s mother met Jane Johnson, who had by that point become an active supporter of Andrew Wakefield’s. “I was always complaining about [Christian’s] terrible tummy issues,” Katie says, “and Jane said, ‘Why doesn’t she come over and see me? I know a lot about that.’ ” Katie was skeptical. “I was thinking, I’m sure she’s a nice lady but it’s going to be another one of those dead ends.” Nevertheless, Katie and her husband agreed to hear Johnson out, and, Katie says, “we were so happy we did.” One of Johnson’s first suggestions was that Christian see Arthur Krigsman, a New York gastroenterologist who subscribed to Wakefield’s theory that a large majority of autistic children had underlying gut disorders that exacerbated or even caused their conditions.

  In January 2006, Krigsman performed a second endoscopy on Christian, just to make sure the doctor who’d scoped him two years earlier had not missed anything. According to Krigsman, he had: Offering up the images from inside Christian’s intestines as proof, Krigsman told Katie that her son had symptoms indicative of autistic enterocolitis, the condition Andrew Wakefield claimed to have discovered in 1998. “He was the first doctor who really understood what was going on with Christian’s crazy gut,” Katie says. Krigsman’s proposed treatment was one that had grow
n popular among Wakefield’s adherents: regular doses of anti-inflammatory medication, a gluten-and casein-free diet, and weekly chelation therapy.54

  The bond between Krigsman and Wakefield went beyond their shared affinity for performing endoscopies on developmentally disabled children and their claims that they’d identified dozens of cases of intestinal trauma other doctors had seemingly overlooked: They also had in common a history of running into trouble with medical boards and employers. Krigsman’s problems dated to 2001, when a review board at Manhattan’s Lenox Hill Hospital rejected the first of several of his research proposals to scope autistic children because of concerns that the procedure’s risks would outweigh its anticipated benefits. In November 2002, the hospital discovered that despite its review board’s decisions, Krigsman had performed “invasive endoscopic procedures” on hundreds of children, many of whom were autistic. Krigsman later sued the hospital for restricting his privileges, and in 2004, he did not renew his application for employment.

  Krigsman’s difficulties with medical authorities did not end when his relationship with Lenox Hill did: In 2004, he was fined by the Florida Medical Board for failing to document continuing medical education required for his initial licensure, and in 2005, the Texas State Board of Medical Examiners found that he’d misrepresented himself to state officials and to the public. When finally he was permitted to practice medicine in Texas, that decision came only after a $5,000 fine and an order to provide a copy of the board’s critical report to “all hospitals, nursing homes, treatment facilities, and other health care entities where Respondent has privileges, has applied for privileges, applies for privileges, or otherwise practices.”

  As significant as those charges sounded, they barely registered compared to the ones Wakefield was confronted with at the time. In February 2004, The Times (London) began running a series that was the result of months of dogged research by investigative reporter Brian Deer. In his first batch of stories, Deer exposed what the British press should have uncovered years earlier: Wakefield had not been a disinterested clinician while preparing his Lancet paper condemning the MMR vaccine; instead, he’d received multiple payments to examine children as part of a lawsuit that was being prepared against drug manufacturers. What’s more, almost half of the twelve children in his study had been funneled to Wakefield by Richard Barr, the class action lawyer representing parents convinced that vaccines had injured their children. The most shocking revelation came later that year, when Deer reported that shortly before his piece in The Lancet was published, Wakefield had filed a patent for a measles vaccine that could be administered independently of those for mumps and rubella—which was just the product parents would be clamoring for if they became convinced that the MMR vaccine was more than their children’s bodies could handle. The sum total of Deer’s investigation raised concerns that the lumbar punctures, endoscopies, and heavy anesthesia that the children in Wakefield’s study had undergone had exposed them, as one member of the British Parliament put it, “to unacceptable risks and unnecessary procedures.”

  Within days of the first of Deer’s stories appearing in print, ten of Wakefield’s twelve co-authors on the Lancet paper officially disassociated themselves from Wakefield’s conclusions; Richard Horton, The Lancet’s editor, released a statement that said, “If we had known the conflict of interest Dr Wakefield had in his work, it would have been rejected”; and the General Medical Council (GMC), which is in charge of regulating and licensing doctors in the U.K., began an inquiry into Deer’s allegations. (That December, the council formally announced that it would begin a “public hearing” regarding the possibility that Wakefield and two other doctors who worked on the 1998 paper had committed “serious professional misconduct.” In 2005, the GMC released a list of eleven preliminary charges, which included acting “in a manner likely to bring the medical profession into disrepute” and subjecting children to “unnecessary and invasive investigations.”)

  In an impartial setting, Deer’s articles and the subsequent GMC inquiry would have raised concerns that Wakefield had used children as guinea pigs and fudged results in an effort to advance his career and fatten his wallet. Among Wakefield’s supporters, the findings were viewed as just the latest effort on the part of cowed governments, powerful business interests, and mercenary journalists to suppress the truth. This reaction is not surprising: By that point, the antivaccine movement had come to embody the qualities that David Aaronovitch identifies in his book Voodoo Histories as characteristic of history’s most enduring conspiracy theories, from the belief that the moon landing was a hoax to a conviction that HIV and AIDS were developed by drug companies in conjunction with the CIA:

  These include an appeal to precedent, self-heroization, contempt for the benighted masses, a claim to be only asking “disturbing questions,” invariably exaggerating the status and expertise of supporters, the use of apparently scholarly ways of laying out arguments (or “death by footnote”), the appropriation of imagined Secret Service jargon, circularity in logic, hydra-headedness in growing new arguments as soon as old ones are chopped off, and, finally, the exciting suggestion of persecution.

  Whenever Wakefield was involved, persecution wasn’t just suggested, it was stipulated. True to form, he cast the litany of charges as yet another example of the personal sacrifices he made for the sickest and most helpless members of society. “I have [already] lost my job,” he said. “But if you come in to me and say, ‘This has happened to my child’—what’s my job? What did I sign up to when I went into medicine? To look after your child. . . . I’m here to address the concerns of the patient. There’s a high price to pay for that. But I’m prepared to pay it.”

  His supporters were as well: In 2004, with the help of several hundred thousand dollars raised by Liz Birt and a $1 million donation from Jane Johnson and her husband, Wakefield teamed up with Arthur Krigsman to set up a clinic in Austin, Texas. The treatment center was designed to be a one-stop shop for all things—research, treatment, parent education—relating to alternative ways of thinking about autism. Wakefield christened his new endeavor Thoughtful House, a choice that was typical of the savvy way he marketed himself and his ideas. It implied that his treatments, in contrast to those that autistic children received elsewhere, were caring and solicitous, and that he could deliver to parents an introspective, self-aware child.

  One of the clinic’s early patients was Christian Wright. “We tried the diet and it actually helped,” Katie Wright says. “I got him healthy thanks to Thoughtful House. He no longer looks like he has AIDS or cancer and his T cell count is not so low. It’s great—he’s not in and out of the hospital and he’s not covered in rashes.” That did not mean, however, that Wakefield’s methods were helping with all of Christian’s problems: “Cognitively,” Katie says, “I’m not so sure.”

  52 Much was made of the fact that NAAR had received money from Merck, the manufacturer of the MMR vaccine: In 2000, the drug company made a one-time, unsolicited donation of $25,000, a sum that represented slightly more than one-tenth of one percent of NAAR’s total revenue. That entire amount came after a former Cy Young Award–winning pitcher named Bret Saberhagen designated NAAR as his charity of choice in a Merck publicity campaign to promote its anti-baldness drug Propecia.

  53 The program operates in a manner similar to organ donation programs, with the majority of samples coming from people who died unexpectedly.

  54 Chelation therapy is a process during which chemicals are introduced into the body to sever the bond between heavy metals and body tissue; its popularity as an alternative treatment for autism is based on the theory that autism is a result of mercury poisoning. Chelating agents can be administered through lotions, capsules, suppositories, or IV infusions. Chelation’s risks include vomiting, convulsions, irregular heartbeats, and death. There has never been a clinical trial testing chelation for autism; one government-funded trial was halted after scientists at Cornell University and the University of Califor
nia, Santa Cruz, found that rats without heavy metal poisoning who were chelated showed signs of cognitive impairment.

  CHAPTER 20

  KATIE WRIGHT’S ACCIDENTAL MANIFESTO

  On 1:10 a.m. on March 26, 2007, a new thread was started on Yahoo!’s EOHarm forum by someone who wanted to know if Bob and Suzanne Wright were “pursuing [biomedical interventions] with their grandson yet not publicizing this via Autism Speaks.” Before the night was over, dozens of people had replied. No one seemed to know for sure what type of treatment Christian Wright was receiving, but that didn’t stop increasingly caustic complaints about the ways in which the Wrights had failed the “autism community.” One representative post read:55

  If they are utilizing bio-medical treatments, but choose not to disclose that to the pulic than to me that is lying by omission and very misleading. To think that they would deceive the autism community by actively setting forth one agenda for the rest of us, while pursuing cutting edge medial interventions for their own is bull shit and it’s wrong. They obviously don’t want privacy for they wouldn’t have put their story out into the public and started Autism Speaks. Can’t have it both ways and get away with it.

  As the day went on, the accusations became increasingly personal: The Wrights were just looking for attention, or they were so rich they didn’t care what happened to “average” families with autistic children, or Katie Wright was being muzzled by her parents because they were cowards and refused to take an unpopular stance. “Remember when Katie backed out of the press conference last year?” read one message. “I think maybe her daddy told her too. I imagine Granny and Pappy pay lots of the bills for Christian’s treatment.” The author of a different message told the group’s members, “What you all should be asking is, ‘Where the hell is Katie Wright?’ ”