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.
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.
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 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.
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.
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.
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 ambassadors 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.
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.
It was inevitable, of course, that Bob Wright’s eye would be caught early by the two most impressive parent-run organizations sponsoring scientific research. By the time Autism Speaks launched, NAAR—the creation of Eric and Karen London—and Cure Autism Now, founded and still run by Jon Shestack and Portia Iversen—represented two decades of combined experience, with long mailing lists and well-developed networks of scientists already in place. Moreover, NAAR had the brain-tissue bank, and CAN had its library of DNA. Both, which had taken years to build, were unique and precious. Even as Autism Speaks was launching in 2005, Wright knew he wanted these assets. He sent out Alison Singer to get the merger talks started.
For the first time, but not the last, Autism Speaks was about to hurt some feelings.
JON SHESTACK was dead set against any kind of merger with Wright’s group. His reasons were partly personal. He loved running Cure Autism Now. He loved giving everything he had to a cause that drew upon talents in him that he never knew he had, and that fed his passion as much as it exhausted his days. Moreover, it was his way to be doing something for his son Dov, which he found so much more conducive to his Hollywood producer’s personality than doing nothing. He had no interest in giving any of that up to become part of a behemoth run out of New York.
Shestack also had a philosophical aversion to seeing CAN swallowed up. He had come to believe that it was a good thing for science when researchers had more, not fewer, places to turn for money. When a scientist was denied a grant from NAAR, for example, there was always CAN to try next, or vice versa. CAN and NAAR had reached a productive détente under which, despite a somewhat rivalrous relationship, the ground each group staked out for research was often non-overlapping. Shestack saw benefit in the existing arrangement, where no nonprofit group had monopoly power over the choice of avenues of autism science to explore.
That was why he saw Autism Speaks, which was also angling for NAAR—and at least one other smaller nonprofit—as a threat. Years earlier, he had turned down the chance to merge with NAAR, but after Alison Singer called him for the first time, and told him of Bob Wright’s interest in joining forces, Shestack immediately called the Londons in Princeton, and proposed that they all reconsider a marriage. A combined CAN-NAAR organization, Shestack argued, would serve as a counterweight to Autism Speaks, and that would be better for everyone.
But the Londons did not see it that way. They had been meeting with the Wrights, and had already concluded that combining with Autism Speaks could only leverage their work to a higher plane, with the increased funding and visibility that Wright’s clout was proven to produce. Shestack pleaded with the Londons not to go ahead with it, but he had no idea how far along the Londons were in their talks with Singer and Wright. On November 30, 2005, Autism Speaks and NAAR issued a joint statement announcing “the consolidation of the two charities.” Three members of NAAR’s board, including Eric London, would sit on the board of Autism Speaks, but the NAAR name was gone. The “new structure,” according to the press release, “will collectively be known as Autism Speaks, Inc.”
Shestack was given a heads-up about the merger only on the day it occurred, and only a short time before it was publicly announced, when Singer, in New York, delayed her arrival for a meeting long enough to call his Los Angeles home from the sidewalk downstairs. Sitting herself down on someone’s stoop on a side street off Madison Avenue, she braced herself for what she was about to do. Singer liked and respected Shestack, whom she had worked with when he had been interviewed for the “Hidden Epidemic” series. She also knew he would take the news hard. She wanted him to hear it from her.
Shestack was in the shower when she called, and asked her to call back a few minutes later. When she did, the expected happened. She heard Shestack let loose a string of curses, followed by a diatribe on why what Autism Speaks was trying to do was damaging to science. Singer heard him out but, still Wright’s right hand in this matter, she had another message to deliver. As gently as she could, she made it clear to Shestack that if he chose to keep running CAN as an independent organization, he could expect no consideration from Autism Speaks in the competition for funding, media attention, or even the loyalty of Hollywood celebrities who, Singer pointed out, had every reason to want to curry favor with Bob Wright. Furthermore, Autism Speaks would soon be opening an office in Los Angeles, staging walks there, and taking out ad space in newspapers and on billboards. Shestack heard this message as Join us or we will crush you. Singer used no such language, but then, she did not feel it was necessary. She knew Shestack would get the point. She asked him to take some time, and to consider, please, whether a merger might not be the best thing for everyone.
Shestack, despondent, took the matter to one of his closest confidants at CAN, autism father Peter Bell, who was serving as its president. Bell was to Shestack what Singer was to Wright—a friend, and a dedicated activist, who, like Singer, had given up a successful career in another field—as a marketing executive in the pharmaceutical industry—to work full-time for Cure Autism Now. Bell had even relocated his family from New Jersey to Los Angeles. If anyone would have an idea for fending off what Shestack saw as a takeover threat, it would be Bell.
But Bell surprised Shestack. He told him that a fight against Bob Wright was not winnable. Moreover, like the Londons, he saw good reasons for being part of the bigger organization.
Some months later, Shestack learned that most of the board of Cure Autism Now felt the same way. Autism Speaks looked like the future, and it made no sense not to be part of it. When the matter was put to a vote, the proposal passed. Only two members voted against. Jon Shestack was one. Portia Iversen, his wife and cofounder, was the other.
On November 29, 2006, a joint statement announced the merger of Cure Autism Now and Autism Speaks. Once again, a name disappeared. “The consolidated organization,” the statement read, “will be known as Autism Speaks, Inc.” Peter Bell was immediately hired to serve as executive vice president of programs and services, and moved his family back east. Shestack and Iversen were given seats on the Autism Speaks board. When their terms ended three years later, neither was invited back.
AUTISM SPEAKS’S STEWARDSHIP of its research mission would prove to be controversial, to say the least. On the one hand, the money it began funneling into new scientific investigation quickly surpassed anything a private charity had ever contributed to autism science before. In 2006, the organization disbursed almost $14 million, which was 26 percent more than CAN and NAAR combined had given scientists in 2005. In 2007, Autism Speaks notched an even higher number: $24 million. In 2008, it jumped yet again, to $27 million. In addition, the organization now controlled both the DNA library and the brain-tissue bank. Eventually, Autism Speaks would start contributing to a global consortium of scientists set on sequencing the entire genomes of ten thousand individuals from families affected by autism.
Autism Speaks’s political lobbying helped steer tens of millions of dollars of federal money into autism research, and its awareness programs also alerted more scientists than ever before to the possibilities and opportunities—for themselves—in the study of autism. Annually, scientists from more than forty countries were flocking to the annual meeting of the International Society for Autism Research, of which Autism Speaks became a lead sponsor and advertiser.
And yet, within a few short years, Autism Speaks’s performance in the area of scientific research would come under question from all sides, and the group would yield leadership position in this realm to others, while Bob Wright’s dream of a “big tent” organization—synchronized, harmonized, and centralized—would be seen sagging dangerously low, pulled down by the weight of too many irreconcilable viewpoints.
And all because Autism Speaks became entangled in the vaccine controversy, where the science on one side didn’t add up, and never had.