by John Donvan
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.
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AUTISM SPEAKS
For 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.
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THAT 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.
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IN 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 thei
r 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.
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THAT 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.
Wallace’s sin was to have written favorably about the man who was most hated by adherents of the vaccine theory—a Philadelphia pediatrician by the name of Paul Offit. And Offit’s sin was his readiness to challenge what he called the “wishful thinking” of parents who bought into the vaccine theory. Offit was one of the few well-credentialed critics of the vaccine camp to say, out loud, that it was time to end the pretense that parents’ insights and instincts deserved as much weight as the findings of respected scientists. Offit’s bluntness was a gift to the media, and, for a period of years, there was almost no big news report on vaccine safety that did not feature him as its leading voice, challenging with verve and vigor what parents were saying. He became the “go-to guy” without equal for the scientists’ side of the story.
There was one wrinkle. In the 1990s, Offit had coinvented and patented a successful vaccine targeting the rotavirus, earning several million dollars at the time. In 2006, Offit’s vaccine was made part of the recommended vaccine schedule, to be given in the second and fourth months of life. His parent foes pounced on this, arguing that Offit’s true motive for attacking their beliefs was his desire to protect a large source of his income. As far as they were concerned, anytime Offit opened his mouth to opine on vaccine safety, whatever came out of it could be summed up in three words: conflict of interest.
The online vaccine activist community’s obsession with Dr. Paul Offit became one of the wildest and longest-running sideshows of the controversy. Dubbed “Dr. All Profit,” Offit emerged as the default demon in parents’ long, wearying battle with unseen enemies in the government and medical establishment. But Offit was out there, visible, vocal. In posts on the Age of Autism site, he was called a “monster,” a “scumbag,” “one of the worst, most evil villains.” Later, the site named him “Denialist of the Decade.” Later still, J. B. Handley, founder of a group called Generation Rescue, wrote: “I will do everything within my power to ensure that Offit is remembered by history as one of the most sinister, dishonest, well-funded talking heads pharma ever produced.” At various points, Offit received anonymous death threats, by phone and by email. Once, someone called his phone and reeled off the names of his kids. An emailer wrote him, “I will hang you by your neck until you’re dead.” For a time, he was accompanied by a security guard.
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THIS WAS THE landscape Bob Wright surveyed when, prompted by his grandson’s diagnosis, autism became something he cared about. The divisiveness offended his sensibilities, not because he was particularly delicate, but because he was a businessman, and a rather hard-nosed one at that. He was personable, witty, and loyal to those who showed him loyalty. But as a CEO interested in winning, he always figured out how to do exactly that, with an intensity that made him, in the corporate kingdom, rich, respected, and feared. At NBC, commanding vast resources, wielding unassailable executive power, he had transformed the network into a far bigger, more innovative, and more omnipresent media conglomerate than it had ever been before.
Now he set out to apply his skills, and seek similar gains, with regard to addressing the challenges of autism. Wright wanted to get all the smart people in the field to work together, as if under one “big tent,” as he often put it. He wanted Autism Speaks streamlined for efficiency the way any business should be, with everyone in the enterprise synchronized, harmonized, and centralized under a single management team; a unifying logo; and a clear, consistent, and enforceable statement of the mission of confronting this epidemic. With a businessman’s perspective, Wright brought in market research professionals, who came up with the name Autism Speaks, and refashioned the puzzle-piece logo that other autism groups had been using for forty years. He offered six-figure salaries to lure experienced nonprofit executives to run daily operations.
He had no intention of taking the slow-build, start-in-a-basement, one-dollar-at-a-time approach followed, through necessity, by the founders of virtually every other autism group in history. He wanted Autism Speaks big from its first day, and decided to lead personally, pulling whatever strings he could to get his organization started, funded, and recognized—and fast.
This paid off immediately, when his longtime friend Bernie Marcus donated $25 million over the first five years to get the organization up and running. Within months of starting up, Autism Speaks was throwing high-powered fund-raisers, like a concert that featured Jerry Seinfeld and Paul Simon, with former NBC anchorman Tom Brokaw as emcee—all friends of the Wrights. These were benchmarks that most nonprofit organizations could take years to achieve, and only few ever did.
Wright asked Alison Singer to serve as an interim CEO, and she accepted on the condition of flexible hours, because of the demands at home. With that, Singer’s career as a television executive came to an end. Autism advocacy, and building Autism Speaks into a powerhouse as quickly as possible, became the new total focus of her professional life. Singer, given her personal connection to autism in her own home, grew closer to the Wrights, feeling almost like family as they worked together to build the “big tent” Bob saw as the way to end the pointless acrimony, and to make families’ lives easier sooner.
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IN MANY WAYS, Autism Speaks met that goal. One of the organization’s central priorities was “autism awareness,” which simply meant getting people to know about and care about autism. On that score, the visibility the group achieved within its first year was worthy of envy in the overcrowded and always-struggling nonprofit sector. Of course, the vaccine scare had already let loose a wave of awareness propelled by fear, but Autism Speaks surfed the wave skillfully, sounding the epidemic alarm while presenting itself as an oasis of intelligent, professionally curated information delivered calmly and authoritatively. Parents of newly diagnosed children started to come to the Autism Speaks website first in their search for answers, while journalists seeking quotes and information put the Autism Speaks staff of experts at the top of their call lists. For the first time in its history, the Autism Society of America, the group founded by Bernard Rimland and Ruth Sullivan (originally the National Society for Autistic Children), was no longer the standard-bearer of the autism cause in the popular imagination. The ASA had served that cause nobly, and sometimes heroically, but it was now outshone by the star power and the energy embodied by the Wrights. As ambas
sadors for Autism Speaks, Bob and Suzanne seemed omnipresent, just like their blue puzzle logo. Celebrities were wearing it at award ceremonies. It showed up on 5 million Starbucks cups and at the checkout counter at every Modell’s Sporting Goods store as a $1 pin for sale. Not then, or afterward, could any other advocacy organization claim as much credit for educating so many people so quickly.
A second Autism Speaks priority fell under the heading of “advocacy.” Being perceived as a behemoth translated into immediate access to power for Autism Speaks lobbyists trying to effect changes in government policy. No politician wanted to say no to a meeting with Bob Wright or one of his emissaries. Over several years, this helped Autism Speaks ring up a string of victories by convincing state legislatures to pass laws requiring insurance companies to pay for autism treatment. Previously, families had been denied coverage, almost universally, on the grounds that autism was not a medical condition. Perhaps no other autism “reform” produced a more material benefit to families than the new insurance laws argued into existence by Autism Speaks.
And then there was scientific research. Autism Speaks wanted to “own” that area too.
But that was where things would become a lot more complicated.
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UNDER BOB WRIGHT’S leadership, NBC television had quintupled in size, in terms of revenue, over the twenty years during which he held posts as president and CEO. Some of that growth came from the efficient nurturing of NBC’s existing parts. But some also came from spotting valuable outside properties—companies that were already up and running and ideally making money—and then acquiring them, by purchase or some other arrangement. In this common business practice, known as mergers and acquisitions, growth happens at the stroke of a pen.
Autism Speaks, sprinting to bigness, borrowed from that approach. Prior to its founding, and during its first year of operation, Wright worked hard to bring the best of the best of autism nonprofits inside his big tent. Autism Speaks called these transactions “mergers,” but it was always true that any outside organization brought in in this way immediately lost its identity behind the blue puzzle piece. It was clear that certain groups appealed to Autism Speaks for particular assets they possessed, including talented people. For example, the first announced merger, completed before the official launch, was with a group called the Autism Coalition for Research and Education (ACRE)—a group that excelled at organizing celebrity golf tournaments and other fund-raisers. One of its two cofounders was Emily Gerson Saines, the producer of the movie Temple Grandin. At the merger, ACRE’s other cofounder, Kevin Murray, joined the Autism Speaks board, immediately delivering expertise in that kind of fund-raising, which Autism Speaks knew they wanted to pursue. ACRE had something else of value: its 501(c)(3) tax status. Its transfer to Autism Speaks allowed the new organization to begin accepting tax-deductible donations immediately.