In a Different Key: The Story of Autism (70 page)

Clearly, in some circles, the story still held.

43

THE GREATEST FRAUD

B
y the summer of 2007, nearly five thousand families had been waiting—in some cases, up to five years—for the vaccine court in Washington, DC, to begin hearing evidence for and against their claim that vaccines caused autism in their children. On June 11, their wait ended. At nine o’clock that morning,
three special masters took their seats in a modern, unadorned courtroom a two-minute stroll from the White House. The gallery was filled largely with lawyers, but arrangements had been made to let families dial in to listen to the proceedings by telephone.
Hundreds did so.

For those families, winning compensation would depend on showing a biologically plausible explanation for how a vaccine had caused each child’s autism. The existence of two hypotheses—one based on measles, the other on mercury—complicated the picture. But lawyers for the families had banded together, forming a legal committee that agreed to present both hypotheses, one at a time, plus a third: that sometimes autism results from the measles virus and mercury acting in concert. All three hypotheses would be challenged by lawyers representing the federal government.

Among those physically present on the first day of the hearings were the parents of twelve-year-old Michelle Cedillo, of Yuma, Arizona, who was to be the first test case for the third hypothesis. Michelle sat belted into a wheelchair,
wearing a noise-muffling headset similar to what a ground crew member wears on the tarmac at airports. Diagnosed with autism, Michelle was profoundly disabled in other ways as well. According to her parents, she had developed normally
as an infant but had suffered a barrage of illnesses after getting her MMR vaccination at sixteen months.

For them to win compensation, it was critical to establish that there had once been a “before” Michelle—a healthy, normally developing child who would have been fine had she never been vaccinated. Here, her mother,
Theresa, provided moving testimony, offering a vivid account of a child who had laughed and played and said words like “apple,” and “Mama,” and even “Jesus,” because, Theresa explained, “my mom had shown her a crucifix in her house every day, [telling Michelle] ‘Jesus loves you.’ ” Then, as excerpts from home videos were played, Theresa offered commentary on her daughter’s first fifteen months or so of life. The tapes showed a smiling baby—playing with toys, laughing with adults, enjoying a bath in the kitchen sink.

The contrast with the Michelle sitting before the panel was stark. She was now a severely ill twelve-year-old girl. She was losing her sight, suffered seizures, could not use words, and endured arthritis and extreme abdominal irritation. When she was eleven, she had fallen during a seizure and broken her leg.

Throughout the morning testimony, Michelle grunted and hit herself repeatedly. Eventually, her parents took her outside. The point had been made: the stakes were huge for the families. So were their needs. Special Master George Hastings affirmed this when he looked at the small audience before him, largely composed of lawyers, and said: “Clearly, the story of Michelle’s life is a tragic one.”

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.

—

O
N
J
UNE
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-focused 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.”