The Panic Virus

by Seth Mnookin; Dan B. Miller

  Barely twelve hours after the initial post in the thread had appeared, Wright herself provided an answer. “I can completely understand the community’s frustration,” she wrote, and went on to assure the group’s members that she was on their side.

  Yes, my husband and I follow a true biomedical approach for Christian. He was a very sick little boy for years. Thanks to the work of wonderful DAN! doctors and parent mentors . . . Christian is much better. . . .

  It was not until we found Dr. Krigsman did these start to get better. I cannot pretend to imagine living through this horrible nightmare, only to have the situation complicated by not having the funds to get your child the treatment he/she needs. It is shameful.

  Our children are so sick and families are being destroyed in the struggle to find and pay for treatment. The parents, and some physicians, I have met through this horrible journey are the bravest people I know. There is no question that I believe my son regressed into autism due to environmental factors. No question.

  Wright’s willingness to reply to the group resulted in about an hour and a half’s worth of appreciative posts—after which the criticism and accusations began once again. “Why must we mince words,” wrote one parent. “I’m not being a wiseass (at least not here), but there seems to be some whacked-out religious conviction that no one can say vaccines.” Another repeated the accusation that the care Christian was receiving betrayed a cowardly double standard on the part of Bob and Suzanne Wright:

  By treating their grandson with biomedical treatments they are privately acknoledging the vaccine played a role in Christian’s regression. They chose to put their name and face with autism by starting Autism Speaks. They have been very successful in raising awareness for autism. . . . Yet, I have seen no grants awarded to vaccine or “environmental” research by Autism Speaks. . . .

  The fact that the Wrights have treated their son/grandson biomedically and then thru their organization whitewash that issue is not only hypocritical but shameful. . . .

  With power comes responsibility and I feel they have failed us thus far. Awareness could be a good thing but what good is it if more children are injured by vaccines while they are waiting for the “right time” to come forward?

  Over the next several hours, the group’s participants got increasingly worked up. When one member, echoing Wright’s language, referred to “environmental factors,” she was all but accused of collaborating with the enemy:

  Who’s side of the fence are you on? The importance to using the word VACCINES is SO IMPORTANT, or dangerous, to the other side that they would rather get stung by a wasp then to use the word!!! Yet you berate us for wanting specific research, into the word they WON’T say!!! How do you know how many kids regressed or not? Have you done research? Please don’t throw those comments out without facts.

  At 12:30 the following morning, having faced a series of escalating challenges—“Do you believe your son was damaged by vaccines? Do you have vaccine records to prove it?”—Wright jumped back into the fray.

  I did not mean to be evasive. I believe that Christian’s regression and subsequent autism was the result of receiving 6 vaccines during 1 office visit at 2 months of age. . . . His vaccines contained thirmesol. He received 31 vaccines total by 18 months. . . . It is devastating because so much of this is preventable.

  Before signing off, she lauded a reporter at Discover magazine who had “really nailed” the story “regarding how autism was triggered.” It was her fervent hope, she said, that more journalists would follow suit.

  It didn’t take long for Wright’s plea to be answered: The following day, David Kirby wrote an article for The Huffington Post about the “fierce debate” within the autism community over the “potential role of environmental influences, particularly mercury, and very particularly, mercury in vaccines.” Many of the people in the “upper echelons of Autism Speaks have rejected any environmental hypothesis and insisted that autism is purely a genetic disorder—though Bob and Suzanne Wright (and the organization itself) remain officially neutral on this crucial question.” Then, invoking “the child who inspired Autism Speaks,” he added his voice to those pressuring Christian’s grandparents to take a stand.

  On Tuesday Christian’s mom, Katie, posted an entry on Yahoo’s EOH List (named after my book, “Evidence of Harm”) that minced not a word. . . .

  So how will some Autism Speaks officials react to Katie’s statements? They could fall back on two recent, but highly inconclusive studies that support the autism-is-genetic paradigm, and continue to reject the environmental hypothesis. But I wouldn’t bet on it. . . .

  The Wrights’ grandson is now, perhaps, the most famous toddler with autism in the world. And the whole world, including the world’s largest autism charity founded upon his very diagnosis, should listen to his mom: “There is no question that I believe my son regressed into autism due to environmental factors,” Katie wrote. “No question.”

  As always seemed to be the case, Kirby neglected to provide crucial pieces of context that would have made his story significantly less dramatic. He failed to mention that the last doses of childhood vaccines containing thimerosal had been used up in 2003, which had the effect of making a debate about the past appear to be a topic of urgent concern. His claim that two recently published genetic studies had been “inconclusive” was technically correct but missed the point: Though the studies had not identified the precise genes connected to autism, they had added to the collection of evidence suggesting the disorder had a genetic basis. His assertion that people in the “upper echelons of Autism Speaks” were insisting that autism was a “purely genetic disorder” was flat-out false: Virtually no one questioned whether environmental factors could play a role in the disease—what people did doubt was whether vaccines were that factor. (Kirby also employed the diversionary tactic of insinuating that any flaws in the genetic theory meant that those of its most vocal opponents were ipso facto correct.) Finally, there was his recasting of Katie Wright’s late-night e-mails as the opening salvo in a with-me-or-against-me battle over the future of autism advocacy. As far as the readers of The Huffington Post knew, when Katie Wright “minced not a word” about the connection between her son’s autism and the vaccines he’d received, it wasn’t the product of two days of cyber-hazing—it was an impromptu manifesto.

  • • •

  On April 5, 2007, Katie Wright and Alison Singer, the executive vice president and spokesperson for Autism Speaks and the mother of an autistic daughter, were booked on The Oprah Winfrey Show, which is seen by seven million American viewers a day and is broadcast in 140 countries around the world. They were there to discuss Autism Every Day, a documentary that provided a raw and sometimes despairing look at life with an autistic child. Before they went on-air, Singer says, the show’s producers told the two women to focus on the day-to-day experiences of families with autistic children—what it was like to go to the supermarket, how it affected relationships with friends—and not to get into the disputes about the disease’s root causes. “They were pretty clear,” Singer says. “We were not supposed to get into the science, because we were not scientists.”

  It was Wright’s first public appearance since she’d been goaded, ten days earlier, to “be a big girl and step it up.” Despite what her producers had said, Winfrey was going to give Wright a chance to do just that. According to Singer, several segments into the program, Winfrey turned to Wright during a commercial break. “I hear you wanted to say something about vaccines,” Winfrey said. “I don’t want you to go home feeling like you didn’t get to say what you wanted to say.” When they came back on the air, Wright was ready:

  WRIGHT: We give thirty-seven vaccines to babies under the age of eighteen months. Nobody has shown that that’s safe, a wise idea, and the multiple vaccines at once. My son is sick all the time, he has constant immune, immune reactions to everything, his allergies are exploding. I mean, if you look at food allergies, asthma, autism, it’s all conn
ected.

  WINFREY: Well I’m going to let you—I said I was going to let you say it because I said when you got home, you would be crazed that you didn’t say it. (Turns to audience.) She wanted to say it and I wanted you to get it out there. (Audience applauds.)

  WRIGHT: Thank you, thank you so much.

  WINFREY: Because you’re a mother.

  WRIGHT: Yeah.

  WINFREY: You’re a mother dealing with her child every day.

  WRIGHT: Thank you. (Applause.)

  WINFREY: We’ll be back in a moment.

  Wright’s characterization of the vaccine program, which Winfrey did not challenge, was completely false. There had been studies showing vaccines were safe, just as there were reasons behind the structure of the recommended vaccine schedule. Her figure of thirty-seven vaccines—which was six more than what she’d claimed Christian had received in her post on the EOHarm forum—seemed to have been pulled from thin air: Even if you counted the MMR vaccine and the DPT vaccine as three separate vaccines each, there were only twelve vaccines administered to infants eighteen months or younger. Tallying them up by individual injections—meaning the polio vaccine, which requires four doses spread out over a period of a year, would be counted four times—still resulted in a total of only twenty-one shots.

  In the coming weeks, Wright’s statements about vaccines grew in intensity, but it wasn’t until the annual AutismOne conference in Chicago in late May that the situation exploded into public view. In 2007, the marquee event of the conference’s second-to-last night was the screening of an excerpt from a videotaped interview Wright had given to Kirby shortly after his article in The Huffington Post had appeared, which would be followed by a discussion session that both Wright and Kirby would participate in. (The full interview, along with “special commentary,” was for sale at the conference as a DVD.) Shortly after the interview began, Kirby asked Wright to describe what had happened when Christian received his two-month shots. Her son, Katie said, had screamed “like someone was killing him.” His temperature spiked to 104 degrees, where it remained for hours on end. Her doctor was unsympathetic: “She said just give him more Tylenol, every, whatever, four hours. I put him in an ice bath at her suggestion and that was horrible.” Twelve hours later, Katie said, Christian finally passed out. “I went back to the top pediatrician and she assured me that was extreme but within the normal reactions,” she said. “It was nothing to be concerned about.”

  For the next two years, she said, Christian thrived. Then, after he turned two, “he started losing language and he would give me blank looks.” Initially, Katie said, she didn’t believe Christian’s autism had any connection to the vaccines he’d received—after all, the disease’s first manifestations occurred more than twenty months after his extreme reaction. “I really fought it, because it’s so painful,” she said. “It’s beyond painful to think that I, as his mother, took him to the pediatrician, held him down screaming and allowed this to happen to him. It’s so hurtful for me to think about that. I fought it for probably a year.” Then, she told Kirby, she began to learn more—“and Evidence of Harm was so pivotal to my education”—and it all clicked into place.

  If that had been all that she’d said, Wright’s statements would have posed a problem—the daughter of the founders of the largest autism charity in the world was taking an aggressive stance on an issue about which the organization had always insisted it was agnostic—but that was nothing compared to the statements she made during the post-screening Q&A session. First she claimed that the Autism Speaks science advisory board, of which Eric London was a member, was wasting money by awarding grants to people’s “friends.” Then she said that while parents like the Londons may have at one point been a valuable part of the community, “now that their children have grown it is time for them to step aside” so that Autism Speaks could focus exclusively on biomedical and environmental research.

  “I’d just grown very frustrated,” Katie says. “We’d been . . . traveling all over with Christian. I read, like, a thousand books. I was on the computer reading everything—I just felt such great frustration. His story wasn’t getting out and I didn’t even feel like anyone was studying him. . . . So, yeah, I just didn’t care [about people’s reactions]. I just really wanted someone to start helping Christian.”

  Wright’s harsh characterization of some of Autism Speaks’ most senior members forced resentments that had been hidden from public view out into the open. “We didn’t realize that Katie was as antivaccine as she was, anti-NAAR,” says Eric London. After Wright’s interview with Kirby, London says, he began to feel that her attitude was basically, “We acquired NAAR and need to wait a little while to get rid of them.” Bob and Suzanne Wright, however, were not as willing to see their coalition unravel. Within days, they’d posted a stiffly worded statement on the Autism Speaks Web site.

  Katie Wright is not a spokesperson for Autism Speaks. She is our daughter and we love her very much. Many of Katie’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks. . . .

  Autism Speaks merged with NAAR because it believes in and supports its scientific mission, methods, and advisory board. We are proud of the accomplishments of NAAR and grateful to the families and volunteers who created it. They are a tremendously valued part of Autism Speaks. We welcome input from volunteers and parents/guardians of children with autism of all ages, including adults with autism. We apologize to our valued volunteers who were led to believe otherwise by our daughter’s statement.

  Katie Wright might not have been a spokesperson for Autism Speaks, but that point of detail was lost in the escalation that followed. What had started with a single question on an online forum had become a media free-for-all, with details of the spat appearing everywhere from a gossip column on foxnews.com (“Celebrity Autism Group in Civil War”) to the front page of The New York Times (“Debate over Cause of Autism Strains a Family and Its Charity”).

  Today, the Wright family and Autism Speaks remain divided on the issue. “My daughter feels very strongly that vaccines played a serious role in her son’s [autism],” Bob Wright told me in the fall of 2010, not long after Katie Wright posted an entry on the Age of Autism blog stating that Autism Speaks was “jeopardizing [its] relationship with the community of families” by continuing to fund research on the genetic causes of and behavioral treatments for autism. “She’s my daughter. I love her to death and I understand her position.” What’s more, Wright says, he is not one of those people who feel it’s time to turn the page. “The vaccine issue is one that’s very important to me and very important to us at Autism Speaks because it could be resolved, one way or the other,” he says. “[The government] ought to put together a series of very serious studies and publicly recognize that there are children that unfortunately are damaged by vaccines.”

  It’s precisely that stance that has caused a growing number of the charity’s former allies to break ranks. In January 2009, Alison Singer resigned after four years as one of the group’s top executives. “It got to a point,” she says, “where the science kept coming out . . . but there was always a group of parents that, when a vaccine study would come, would say, ‘We don’t care about the science because we know in our hearts that our child got autism from vaccines.’ And that’s just not how science is done. At some point, you have to say, ‘This question has been asked and answered and it’s time to move on.’ ” Five months later, Eric London resigned from Autism Speaks as well. “By preferentially investing and advocating for the use of limited financial resources on the ‘biological plausibility’ [of the causal relationship between vaccines and autism] argument, the organization is adversely impacting the advancement of autism research,” he wrote in a statement announcing his departure. “The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be
more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.”

  55 The spelling and punctuation of quotations that appeared on the EOHarm forum have been left as they appeared so as to avoid the landscape of “sic”s that would result from the hurried spelling and disregard for grammar typical of Internet message boards.

  CHAPTER 21

  JENNY MCCARTHY’S MOMMY INSTINCT

  Jenny McCarthy’s career in the public eye began in October 1993, when, at the age of twenty-one, she was named Playboy’s Playmate of the Month. Not long thereafter, she was crowned the magazine’s Playmate of the Year, and for much of 1994 she hosted Hot Rocks, an hour-long Playboy Channel TV show that aired “uncensored” music videos.

  Her rise to mega-stardom began in earnest in 1995, when MTV hired her to co-host its new dating show, Singled Out. From the show’s first episodes, it was clear the five-foot, seven-inch native Chicagoan’s appeal had at least as much to do with her fearless sense of humor and the guileless way in which she broke taboos as it did with her bleached blond hair and her buxom physique: Every time she gleefully sniffed her armpits or bragged about the potency of her flatulence, she reminded the world that you didn’t need to be an ethereal waif like Kate Moss or a supercilious beauty like Christy Turlington to be a sex symbol.

  By 1996, McCarthy had become one of the most ubiquitous stars in the United States. That year she appeared on two more Playboy covers and bidding wars broke out whenever she announced her intention to work on a new project. In 1997, she had two eponymous shows running on TV at the same time—MTV’s sketch comedy program The Jenny McCarthy Show and NBC’s half-hour sitcom Jenny—and was paid $1.3 million by HarperCollins for her quasi-autobiography, Jen-X. Then, in an instant, her appeal seemed to evaporate. Despite a massive promotional campaign, Jenny tanked—its ratings were so bad that it was canceled after a single season—and her book flopped as well.