In a Different Key

by John Donvan

  The hearings specific to Michelle’s life and difficulties lasted twelve days. Then Hastings had to rule. But first he had to read more than 3,000 pages of testimony, as well as thousands of pages of Michelle’s medical records, some twenty experts’ reports, and approximately 800 academic studies. He was not going to be done with this in just a few months.

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  ON JUNE 18, 2007, just as the public hearing on Michelle Cedillo’s case reached its midpoint, the New York Times published a front-page story with the headline “Autism Debate Strains a Family and Its Charity.” Embarrassing in its details, the piece exposed a bitter quarrel that had cut through a family of autism activists: the family of Bob, Suzanne, and Katie Wright.

  Painful enough in what it said about them, it also made it obvious that the vaccine controversy was wreaking havoc at Autism Speaks.

  For some weeks prior to the Times story, Katie Wright, Bob and Suzanne’s daughter, had been sharing with the autism community online her growing belief that it was a vaccine that had made her son sick. She repeated this opinion in a videotaped interview with David Kirby. Then she went on an episode of The Oprah Winfrey Show devoted to autism, where she described Christian as having experienced a horrible reaction to multiple vaccines.

  This was decidedly awkward, given that Autism Speaks had always sought to remain scrupulously impartial in the vaccine controversy. This irked people on both sides of the issue: those who wanted the organization to disavow the theory, and those who wanted it embraced. During the Kirby interview, Katie Wright indicated which side she was on when she shared her view that some members of Autism Speaks were “resistant to change” and “afraid to offend government officials.” It was understood that she was talking about some of the older generation of autism parents, at least one of whom—NAAR founder Eric London—now sat on the Autism Speaks board. “A lot of these people,” Wright said, “their children are adults now. And I think it’s time to step aside.”

  Even though Wright was always careful to point out that she was speaking for herself, and not for her parents’ organization, the distinction was overshadowed by the fact that she was, after all, the boss’s daughter.

  A terse statement from Bob and Suzanne quickly appeared on the Autism Speaks website. “Katie Wright is not a spokesperson for Autism Speaks,” it said. “Our daughter’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.” They also addressed the many people Katie might have insulted, insisting that their efforts were appreciated, regardless of which generation of activist they belonged to. The last line said this: “We apologize to our valued volunteers who were led to believe otherwise by our daughter’s statement.”

  The Times story reported that parents and daughter were not on speaking terms. But Katie, an active blogger, had continued communicating with her online public. “I am terribly sorry if statements reflecting my frustration with the pace and scope of autism research offended…” she wrote to parents and volunteers. At the same time, she affirmed her animosity toward the “scientists at the CDC, NIH and elsewhere, who have discounted and obfuscated the autism/environment connection for far too long.” And she addressed the tough statement her parents posted: “I do not understand why such a personal denouncement of me was necessary.” In fact, her mother and father seemed to rethink the tone of their post, later adding: “She is our daughter, and we love her very much.”

  None of the Wrights wanted this feud perpetuated. The need to look out for Christian connected them all. Katie and her parents reconciled soon after the Times story.

  The story blew over, but not its unsettling effect on Autism Speaks’s aspiration to remain above the fray in the vaccine debate. The public could now easily wonder whether the organization would bow to activist pressures to take the vaccine theory more seriously in order to keep the peace in the Wright family. At the same time, the episode spurred at least one Autism Speaks executive to begin lobbying internally for the group to take the opposite step, and explicitly disavow any adherence to the belief that vaccines cause autism.

  That executive was Alison Singer, one of Bob Wright’s most trusted lieutenants. By 2007, the year of the article, and the start of the vaccine trials, Singer—who at one time believed the vaccine theory had merit—had changed her mind. She had the IOM reports, and other studies, and felt that the data had answered the question convincingly. Indeed, she would always say that, had the studies gone the other way, then of course her opinion would be different. In making the case inside Autism Speaks, however, she was up against an uncomfortable reality: the boss’s daughter was an autism mom who still believed that vaccines caused autism, and the boss himself was committed to a philosophy of inclusiveness that required not alienating those in the autism community who hewed to the vaccine theory.

  Singer knew that Wright trusted her. She could talk to him about these concerns behind closed doors and always get a respectful hearing. She often heard him finish these conversations by saying, “Alison, I know you’ll do the right thing.” Singer understood what was expected of her. Because she still believed in the larger mission, she complied, keeping her misgivings to herself when representing Autism Speaks.

  But in the period that followed the Times story, Singer found that going along was becoming harder to do, as she also came to believe that the vaccine controversy was draining away years of research funding and energy that could have been put to better use. Moreover, reports had started coming in of disease outbreaks that could be plausibly—though not decisively—linked to parents refusing to have their children vaccinated. In 2004, and again in 2005, cases of pertussis, or whooping cough, suddenly tripled to more than 25,000. (The trend did not stop there: in California, the hardest-hit state, whooping cough killed 10 infants in 2010, while racking up 9,000 reported cases overall—the highest state tally since 1947. Meanwhile, measles was becoming active again in the United States, with reported infections reaching a twenty-year high in 2014.)

  Singer saw a nightmare scenario: one where Autism Speaks was someday blamed for children getting sick and dying because it failed to use its moral authority to set the record straight on what the science said: that vaccines do not cause autism. She was not sure how much longer she could continue to remain publicly silent on the matter. Then, a single email led her to an answer.

  It came in late January 2009, as Singer was putting chicken nuggets in the oven for her daughter’s dinner. Popping up on her open laptop on the kitchen counter, the email’s author, Singer could see, was Lyn Redwood. Still president of the anti-thimerosal organization SafeMinds, Redwood had continued to serve on the federal Interagency Autism Coordinating Committee. But Singer held a seat there too, named to the committee because of her position at Autism Speaks. Each month, she and Redwood sat at the same table, two of the IACC’s six “public members,” casting their votes on the nation’s autism policies.

  Redwood’s email was distributed to all IACC members, urging them to insert new language in a draft of research recommendations that had been approved during the prior session. The timing was important. The full committee was due to meet the next day, to finalize the draft, which Autism Speaks had already endorsed publicly. It contained two new research initiatives centered on vaccines, but Redwood was asking that the document add an explicit statement of principle “to leave no stone unturned in these investigations, including the potential role of vaccines and vaccine components.” She proposed several other edits to the draft, which would have the net effect of aligning the strategic plan more closely with the priorities of the vaccine activists.

  Something shifted in Singer when she saw this. She asked her husband to take over the kitchen duties, then went downstairs to their basement to phone Bob Wright. She told him that she could not bring herself to vote in favor of Redwood’s changes. What’s more, she could no longer support the two vaccine-focu
sed studies that had already been approved, because she did not believe they were scientifically justified. Wright heard her out sympathetically, but he told her that he and Suzanne still believed that a vote for more vaccine-centered research was in the best interests of all.

  It was a warm conversation, at the end of which Wright told Singer that he trusted her judgment, and was counting on her, once more, to “do the right thing.”

  Late that night, Singer emailed Wright her letter of resignation. In it, she praised Bob and Suzanne, and expressed gratitude for being part of what they had built at Autism Speaks. Together, she wrote, they had “elevated ‘autism’ to the global vocabulary.” However, she explained, “as a matter of personal conscience, I cannot vote in favor of dedicating more funds to vaccine research that has already been undertaken and which I and many others find conclusive.”

  The news shocked the autism world the next morning, in part because Singer was so identified with Autism Speaks. She had appeared in the organization’s videos, helped write its policy positions, and served as its executive vice president. She had been the Wrights’ lieutenant, their enforcer, their confidante, and their friend.

  This was reflected in Bob Wright’s generous response, which arrived before sunrise. “Alison,” it began, “I respect your decision. I am surprised but I do want to thank you for all your contributions to AS. We would not have built this organization without your talent and efforts.”

  That day, when Singer took her seat at the IACC meeting, she was no longer there as a representative of Autism Speaks. She voted to reject Lyn Redwood’s proposed language. And when the committee unexpectedly revisited the parts of the strategic plan that already called for further investigations of vaccines, she joined the majority in voting to strike those recommendations.

  Autism Speaks’s official response to Singer’s vote was a great deal less warm than Wright’s email to her had been. A statement quoted Wright as saying, “We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan.” As a result, the statement announced, “Autism Speaks is withdrawing its support for the Strategic Plan.”

  Next came a full paragraph devoted to Singer. It said nothing about her years of service. Confirming that she was “no longer…a representative” of the group, it made a point of saying that, when she submitted her resignation, “it was accepted.” This immediately let loose a wave of speculation by bloggers as to whether Singer had been pushed out the door of AS. Some used the word “fired.”

  But the drama of Singer’s split from Autism Speaks also galvanized a good many autism parents who had not previously spoken up in favor of the stand she had taken. Her supporters included mothers and fathers who had grown weary of seeing the vaccine controversy steal the limelight when there was so much else to talk about. Like Singer, these parents believed that science had answered the questions about MMR and thimerosal and that it was time to move on.

  Losing Singer was disruptive for Autism Speaks, and not only because she had contributed so much to its establishment and growth. Her departure was a direct and public challenge to the organization’s commitment to serious science. A second blow came a few months after Singer’s resignation, when Eric London also quit Autism Speaks. On his way out, London, who sat on the group’s scientific advisory board, took a direct shot at that aspect of the organization’s work. “After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment,” he wrote in his letter of resignation, he now felt that the choices made by Autism Speaks “have adversely impacted autism research.” These developments had consequences. The energy Autism Speaks would exert to defend its reputation on the science front became a distraction from its runaway success in its other mission: getting the world to care about autism.

  With the vaccine debate, Autism Speaks had run afoul of its own well-intentioned determination not to leave anybody out in the cold. Attempting to bridge the chasm between two polarized constituencies, the organization had been forced into rhetorical somersaults, with a policy statement that endorsed the “proven benefits” of vaccination, but at the same time pledged to investigate the possibility that vaccines might be harmful. Phrased so as not to alienate either side, it alienated both.

  The Wrights were caught in the middle. They gave copious amounts of their personal time to helping families, only to be rewarded with disparagement and disdain from both factions of the vaccine debate. As the most prominent face of the organization, Bob Wright in particular was often called upon to declare himself for one side or the other. As he continued to try to straddle a middle ground, and to shift attention to other important issues, he and his wife were sometimes nastily maligned, especially by believers in conspiracies, for their “silence.”

  Meanwhile, Autism Speaks’s financial contribution to autism research declined steeply from its peak. In 2009, the group’s direct investment in science dropped to just over $11 million, less than half the 2008 figure, which had marked a high point. Over the next few years, that number seesawed but never came close again to the 2008 level. In some years, the total grant amount was not much higher than what CAN and NAAR together had been giving out before the merger with Autism Speaks, with its promised synergy.

  Soon after her departure, Alison Singer started the Autism Science Foundation (ASF), also with the mission of funding autism research, though not into the potential dangers of vaccines. That gave the ASF the aura of being a counterweight to Autism Speaks, albeit a small one. More significantly, in terms of money and prestige, an endeavor called the Simons Foundation Autism Research Initiative (SFARI) entered the arena in 2007, awarding an average of $45 million per year in grants, eclipsing Autism Speaks and every other autism nonprofit. SFARI, which maintained a deliberately low profile—no television ads, no walks, no lobbying—was funded through the generosity of a single family, whose sole goal was moving forward the science on autism. Truly above the fray, with no public to answer to, SFARI steered completely clear of the vaccine controversy and was respected all the more for that. Without question still the brand name among autism nonprofits, justifiably credited with advancing the cause in many ways, Autism Speaks was no longer the leader in the area of scientific research—partly as a result of the schisms the vaccine debate had created.

  Eventually, Autism Speaks did choose sides. In 2015, it quietly deleted its online policy statement about vaccines and replaced it with one that said: “Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be vaccinated.” Posted without fanfare, it felt like a footnote.

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  WHEN ALISON SINGER resigned from Autism Speaks in the winter of 2009, the family of Michelle Cedillo was still waiting for the vaccine court to rule. Seventeen months had gone by, during which the remaining set of test cases had proceeded. Two of them featured children like Michelle, whose parents were claiming injury by MMR and thimerosal acting in combination. A second series of three cases attempted to document thimerosal acting alone. A third series of cases focusing on MMR acting alone was canceled. The first set of cases had explained the mechanisms well enough.

  On February 12, 2009, in a 174-page decision, Special Master Hastings issued a stark ruling against Michelle Cedillo’s claim for compensation. Using italics, he declared it “extremely unlikely that any of Michelle’s disorders were in any way causally connected to her MMR vaccination, or any other vaccination.” This decision was not out of any lack of sympathy for her or her parents. Indeed, Hastings praised them as having a “very loving, caring and courageous nature.” But in his capacity as a special master, he found no grounds for saying that their daughter’s autism was caused by vaccines.

  To the contrary, Hastings said, the bulk of the evidence was “overwhelmingly contrary” to the parents’ claims, “concerning vi
rtually all aspects of their causation theories.” So “one-sided” was the case that, in the end, the decision he had to make was “not a close call.”

  This was devastating enough to those who believed in the merits of the vaccine theory and those who had spent years promoting it. But then, most unusually, Hastings devoted a sentence or two to scolding those who had helped convince families like the Cedillos to buy into the theory. They had trusted doctors and other specialists whose advice, he wrote, using italics again, had been “very wrong.” “The Cedillos have been misled,” he said—misled “by physicians who are guilty, in my view, of gross medical misjudgment.”

  It was as harsh as it was blunt. The vaccine theory had failed once again.

  One by one, the rest of the test cases also failed. After that, appeals were filed, but they went nowhere. In the summer of 2010, the last of these appeals—brought by the parents of Michelle Cedillo—was denied. Soon the lawyers who had encouraged the parents to sue lost interest, seeing that there would never be a payday. The science simply wasn’t on their side.

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  THE YEAR 2010 was a bad one for Andrew Wakefield as well, probably the worst of his career. He had been waiting since the middle of 2007 for the General Medical Council, the UK’s physician licensing authority, to rule on his “fitness to practice.” The investigation had turned out to be the longest in the GMC’s history, requiring a combined 217 days of hearings, filings, and deliberations, and costing approximately $9 million.

  On January 28, 2010, the five-member panel found against him in overwhelming fashion. Three dozen charges against him were upheld. The ruling repeatedly branded Wakefield’s behavior with words like “dishonest,” “irresponsible,” “unethical,” and “misleading.”

  In February, The Lancet finally fully retracted his 1998 article. “I feel I was deceived,” complained its editor, Richard Horton, who said it was now “utterly clear” that the paper’s claims were “utterly false.”