In a Different Key: The Story of Autism (66 page)

To the parent-activists, this was a major win: validation from the top that their claim was not just some far-fetched fantasy. Encouraged, emboldened, they pressed forward with their case, evoking the autism parents of earlier generations in the sheer intensity of their efforts. In doing so, the mothers and fathers operating in this first half of the
first decade of the new millennium had two huge advantages over their predecessors. One was the Internet, where a core group of users could log up to thousands of postings, leading to a sense of support and solidarity, if not an exaggerated sense of strength in numbers.

Their other advantage was the complete upending of the power balance between professionals and “consumers,” which had occurred in the forty years since autism activism had been born. Gone was the habitual deference to expertise once expected of lay members of the public. Suspicion of authority, and the impulse to challenge it, had become familiar practice. The
Mercury Moms never doubted their right to get in to see the top vaccine people at the FDA, the NIH, or the CDC. The officials at these agencies must have believed in this entitlement too, or at least found it politically wise, because they granted the parents the meetings. Parents were invited to question officials in open sessions and to present testimony at scientific hearings.

Once timid, almost “hat in hand” in their dealings with the expert class, autism parents of the 2000s assumed the right to hold the medical authorities’ feet to the fire. One mother, who later was a guest on NBC’s
Today
show,
boasted in an online posting about joining fellow parents in disrupting a meeting at the NIH, where they had all been invited to be updated by some of the nation’s leading autism researchers on their latest work. Irritated when the presenters began discussing studies that had nothing to do with “their” issues—vaccines, gastrointestinal issues, or food allergies—people in the audience began interrupting, grabbing the floor microphone, and hollering “We are not stupid!” and “Why are you wasting our time?” and “Listen to me: WE ARE NO LONGER SUSCEPTIBLE TO YOUR PROPAGANDA!” At one point, the mother who wrote the account tried to launch a mid-meeting boycott. “If the NIH is going to continue wasting our time,” she declared, “then I am going to go have lunch.” A section of the audience rose to follow her. Though she did not follow through, and later said she regretted behaving this way because it was “non-productive,” she admitted that “to publicly humiliate those in power felt good.”

So far had the pendulum swung that, at times, the bureaucrats in charge of the nation’s public health came across as—if not humiliated—then thoroughly cowed by the fury of those who believed in the
thimerosal link. Under powers Congress granted the people in the 1970s, the parents could now get copies of government scientists’ internal emails, memos, and transcripts of meetings, which they perused for signs of a government cover-up of mercury’s risks. One such transcript, fed to environmental lawyer Robert Kennedy Jr., was used by Kennedy in a 2005
Rolling Stone
article called “Deadly Immunity,” where he charged that the government and vaccine manufacturers had colluded
“to hide the risks of thimerosal.” He called it “a chilling case study of institutional arrogance, power and greed.” Following the article’s publication, the Senate launched a formal investigation into possible improprieties by government scientific officials, including financial conflicts of interest, where members of the nation’s vaccine policy leadership were treated like defendants.

The year 2005 saw another landmark for the mercury theory. It was the year a writer named David Kirby published a potboiler-style account of the Mercury Moms’ campaign called
Evidence of Harm
. Kirby adopted the posture of an impartial journalist, asserting that “there are
two sides to every good story, and this one is no exception.” But with Lyn Redwood as a leading player in the narrative, and one of its major sources, the book’s sympathies were tilted unabashedly toward the activist parents who, Kirby wrote, “never abandoned their ambition to prove that mercury in vaccines is what pushed their children, most of them boys, into a
hellish, lost world of autism.”

For stoking fear and increasing awareness of autism, Kirby’s book was unprecedented in its power. He was indefatigable in promoting it, appearing everywhere from the
Montel Williams Show
to NBC’s
Meet the Press
. He gave talks all over the United States and was a frequent guest on a popular radio show whose host, Don Imus, was a complete believer in the thimerosal connection. The
“Evidence of Harm” Yahoo! group drew first hundreds and then thousands of postings each month, taking over as the primary online meeting point of the mercury theorists.

With its overtones of the Erin Brockovich story, no one was surprised that Kirby’s book, which became a
New York Times
bestseller, was quickly
optioned for a Hollywood movie. Reading it made parents everywhere feel that there was a clear and present danger that their
child could get autism. They became afraid, and no awareness campaign had ever been more powerful than fear.

More politicians began picking up on that fear. Lobbied by parents, and in particular by Cure Autism Now’s Jon Shestack, the Senate in 2006 passed the
Combating Autism Act without a single “no” vote. The act authorized a billion-dollar expenditure over five years, dedicated to meeting the needs of people with autism. President George W. Bush signed the revised bill into law in late December.

In addition to authorizing the billion dollars, the law overhauled the composition of a committee established to advise the federal government on how to spend the money. Called the Interagency Autism Coordinating Committee, it sounded like one more lifeless chunk of bureaucracy. But the reconstituted IACC was meant to have some real heat behind it, while reflecting the fact that autism had now become a political concern. This showed in the list of people asked to join the new IACC. It
glittered with the names of experts, nearly all with MDs and PhDs, who represented the top ranks of the government services and health-research bureaucracy. But the law had also required the new IACC to include citizens it called “public members.” There had to be at least six such members—people who were not part of any federal bureaucracy but who had a connection to autism. At least one had to be “a parent or legal guardian of an individual with an autism spectrum disorder.”

In 2007, Lyn Redwood, by then president of SafeMinds, received a letter on official federal government stationery. Signed by Mike Leavitt, secretary of the Department of Health and Human Services, it informed her that she was being offered one of the six public slots.

To autism parents of earlier times, such an invitation would have been unthinkable. Redwood’s appointment, in particular, represented a radical break. A Mercury Mom had acquired a top position in the hierarchy of autism policymaking in the United States, to sit among scientists. A direct outcome of the fear caused by the claim that vaccines had created an autism epidemic, it was a remarkable turn of events, and a signal indicator of the arrival of parents as a political force.

But another force had entered the autism arena by this time, an
organization founded in 2005, whose dominance would soon, by design, have an influence on almost everything related to autism, from science to media attention to politics. The timing of its establishment—right in the midst of the epidemic scare—was critical, both to its purpose and to its strategy.

This group, however, was not founded by vaccine activists, or even by parents. This time, it was a pair of grandparents.

41

AUTISM SPEAKS

F
or five days in late February 2005,
the NBC network devoted some portion of every one of its news programs to the topic of autism. Under the rubric of “AUTISM: The Hidden Epidemic,” the network’s morning and evening news on each of those days presented autism as a national emergency that was being neglected. NBC’s cable networks MSNBC and CNBC were also airing segments for the series. Four months in production, “The Hidden Epidemic” was a massive commitment to a single advocacy interest, which, as far as anyone could remember, was unprecedented for a network news division. NBC later reported that
some 40 million people saw at least part of the series.

On the morning of its last day, viewers met the television executive who had put “The Hidden Epidemic” on the air. Appearing on the set of the
Today
show, NBC CEO Bob Wright, along with his wife, Suzanne, sat chatting on high stools with interviewer Matt Lauer. The subject was the problems faced by families trying to deal with autism’s challenges. Wright pointed out that such families were
“in most cases, exhausted and broke,” with no way to advocate for more attention and money.

“Now, there are a lot of good organizations out there privately but—” Bob started to say, before Suzanne broke in.

“We need a national organization,” she said.

With that, a few moments later, she folded back the lapel of her jacket, and pointed to the small pin she was wearing. It was blue and in the shape of a puzzle piece. It was the new logo of the new organization they announced that morning: Autism Speaks.

—

T
HAT WINTER, WORD
had been circulating in autism circles that a couple with substantial wealth and power who lived in New York had a grandson who had just been diagnosed with autism. In fact, by the time the Wrights went on the
Today
show, and revealed themselves as those grandparents, the better part of a year had passed since doctors at New York–Presbyterian hospital had told them and their daughter Katie that they had no medical answer for the severe ailments of three-year-old Christian.

The doctors had diagnosed Christian with the mysterious, empty-sounding Pervasive Developmental Disorder—Not Otherwise Specified. It was, they knew, another way of saying that Christian had autism. His symptoms were unmissable. He no longer spoke, though he’d had a few words at one point. He made no eye contact with anyone, not even his mother. He barely ate and almost never slept. He was also one of those kids suffering repeated onslaughts of inflammation in his digestive system. His bottom was raw from constant diarrhea, and he kept getting staph infections, yeast infections, and eye infections. To the Wrights, it seemed apparent that whatever was wrong with Christian, it was a kind of sickness in his body.

Wright was stunned when the doctors told the family they had no fix for his condition. The doctors were surely aware that he held a seat on the board of directors of that hospital, which usually counts for something. But they had examined Christian for three days, and the boy’s mother was taking him home with no medicine, no therapy, and no real answers. Wright was hurt, on his grandson’s behalf—and his daughter’s. He was also angry.

—

I
N THE YEARS
that followed, many autism parents would say, with a note of grim gratitude, that the worst thing that ever happened to the Wright family, their grandson’s diagnosis, was one of the best for their own families. It was an acknowledgment that Bob Wright’s anger over the lack of answers for his grandson, and his and Suzanne’s decision to go public with their story, had reordered the autism universe. Wright
had clout, and he was willing to use all of it. The “Hidden Epidemic” series, when the full resources of a network news division were bent to address the subject, was only the first taste of that.

Its overall producer was a young NBC vice president named Alison Singer. Shortly after catching wind of Christian’s diagnosis,
she had emailed Bob and Suzanne offering her support in whatever way she might help, as a mother who knew some of what Wright’s daughter was going through. Singer’s own daughter, Jodie, then seven, was severely affected. Singer’s adult brother, Steven, who had autism, was now under her guardianship as well. In fact, her mother was Rita Tepper, the woman who had once blamed herself for thinking that she might not have loved her infant son enough because of his temporary resemblance to a chicken.

A close bond soon formed between Wright and Singer. While he put her in charge of creating the “Hidden Epidemic” series—her biggest production assignment to date—she introduced him to Eric and Karen London, the parents who had started NAAR a decade earlier, and who were now more successful than ever in funding scientific research. Singer, who occasionally volunteered for NAAR, thought that hooking Wright as a donor could benefit NAAR immensely, given his passion for helping his grandson.

Wright did meet with the Londons. But he did not stop there. He went on to meet with the heads of many other autism organizations, as well as the directors of various autism education programs, university research centers, and government agencies. In all, he spent a good six months getting himself educated on autism, its leading thinkers and ideas, and on the responses that had been developed for it.

What he saw left him discouraged. Everywhere, he met people who impressed him, with their knowledge, and with their commitment, but it shocked him that the autism field was so fragmented, and so often at war with itself. It was not merely that there were so many different organizations, whose effectiveness was hampered by their small scale, and often pointless cold regard for one another. It was the very tenor of the discourse in the autism community. It had always had the tendency to be acrimonious. But by the mid-2000s, the vituperative tone had reached a new pitch. To anyone, like Wright, just discovering
this for the first time, it was appalling how nasty the conversation had become and would continue to be in the years to come.

—

T
HAT WAS THE
vaccine controversy. It was cutting up the community—and nowhere more so than online. On one side was a group of bloggers devoted to pressing the mercury thesis. On the other was a group of self-identified “skeptics,” who devoted almost as much time to insulting and baiting the activists as they did to debunking their assertions about vaccines. For example, it was not unusual to see David Kirby, author of
Evidence of Harm
, described as “a real douche” and “an idiot.” But the invective went the other way as well. One year, right after Thanksgiving, the
Age of Autism
site—which advertised itself as the “Daily Web Newspaper of the Autism Epidemic”—posted a parody of the classic Norman Rockwell painting
Freedom from Want
. The original showed a family sitting around a Thanksgiving feast, preparing to eat a turkey. But in this
Photoshopped version, a live baby appeared where the turkey was supposed to be, while the faces of the dinner guests all belonged to leading figures in the NIH and the CDC, and others perceived as enemies. Among them was the face of Amy Wallace, a reporter for
Wired
magazine, who had only recently run afoul of the activists.