by John Donvan
These early donations also appeared to vindicate the strategy they had laid out. To ensure their credibility as a donation-worthy association, Eric and Karen insisted they should have the best people in the country associated with NAAR; autism had already seen more than its share of medical quackery. Eric, a scientist himself, was viscerally committed to sound scientific practice. They wanted that value reflected in the people with whom they worked. During those first months, pulling whatever strings they had and calling on friends of friends, he and Karen put together an advisory board composed of scientists with gold-plated credentials and a heavy sprinkling of Ivy League degrees. It was around this time that they rented the mailbox that gave them a Princeton address; they wanted to give autism research “establishment” credibility. To change the world for autism, and make biomedical research on the condition a mainstream matter, they intended to engage only serious scientific minds.
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JON SHESTACK, IN his push to force science to focus on autism, had quickly coined a slogan for what he believed he and Portia had to do for Dov. They needed to “hurry up science.” Jon’s use of this phrase became as much a part of his activist repertoire as those times he pulled out Dov’s photo. “Hurry up science” could have been the name of the organization he and Portia launched in March of 1995 with that goal in mind. But they chose another name, which captured the sentiment just as well. Cure Autism Now. Everyone called it “CAN”—as in, “can do.”
CAN started out with less of a focus on a traditional scientific audience than the Londons’ organization. Jon and Portia already believed that traditional science had let their son down. Neither of them was a trained scientist, and Jon, particularly, had no patience for boundaries. He wore Dov’s autism as a wound, to justify an insistent, sometimes intimidating intensity when he pressed others to see why Dov’s problem should be their problem. Some found this off-putting, but Shestack’s relentlessness made him an unusually effective campaigner and fund-raiser.
Portia was the team’s more placid partner, the more intellectual half of the pair. She was the one trying to understand the science. It was also through Portia that, in its early days, CAN started out by veering away from “establishment” science, allying itself with a man who, to his own detriment, had begun to lose the respect of much of the autism community.
At this time, Bernie Rimland, the “original” autism parent-activist, firebrand organizer, and slayer of the mother-blaming theory, was more passionate and dedicated than ever. He was still beloved by the parents whose calls he always returned, but he had nevertheless increasingly alienated himself in serious scientific circles. This was the result of his frequently dogmatic stands on certain pet theories of autism causation and treatment—like his insistence that courses of megavitamins could alleviate the symptoms of autism. The failure of these assertions to withstand scrutiny by sound scientific studies did not deter his commitment to them. Among some scientists, unkindly, the word “crackpot” began to be whispered about Rimland. By the mid-1990s, the time had passed when newspapers cited him as the world’s authority on autism. In a world governed by peer review, the onetime hero of autism was headed for the margins.
This, however, did not deter Rimland. The outsider agitator who had once been right when all else were wrong—about refrigerator mothers—seemed comfortable believing that was still true. Besides, there were still members of the community who appreciated the outsiders, parents like Jon Shestack and Portia Iversen. And in 1994, they handed Rimland $25,000.
Right before the couple had started CAN, Portia had introduced herself to Rimland. She had read his science newsletter, discovering how much space he gave to studies detailing alternative therapies. The more they talked, the more she admired what she saw as his open-mindedness and his empathy for a mother who was frustrated by the lack of deeper research on the same kinds of biomedical therapies that intrigued him. Rimland had mentioned his ambition to hold a conference bringing together those kinds of researchers, but lamented that he lacked the funds to pull it together. Jon solved that problem in three weeks, with a passionate letter to several of his parents’ well-connected friends around his hometown of Philadelphia.
Portia attended the conference, which was held in Dallas in January 1995. It was not a large gathering: six parents and twenty-seven medical doctors and PhDs. But Portia was impressed by the range of disciplines represented: genetics, immunology, psychiatry, biochemistry, neuroscience, pharmacology, endocrinology, gastroenterology, and toxicology. She also noted the nonjudgmental ground rules. A biochemist and autism parent named Jon Pangborn had decreed that, for the first day, no one who had the floor was to be challenged or questioned on his or her work or hypotheses. Everyone’s idea was meant to land softly and have the benefit of germinating in an atmosphere where skepticism was temporarily suspended.
Thus, a wide range of hope-inducing, promising ideas were presented. They included special diets, more about supplements, and information about a procedure known as chelation, in which an individual is dosed with drugs that remove accumulated heavy metals from the body. The presenters fully understood that doctors representing such techniques, whose efficacy and safety were less than fully established, would be dabbling outside the usual cautious boundaries of science. But there was a consensus in the group that the “autism emergency” justified such measures. As remarked by Sid Baker, another physician participant, only some practitioners and parents “had the stomach for a risk/benefit relationship.”
Portia and Jon had been talking about working with professionals who were comfortable with alternative thinking, so she was thrilled that she had found them in Dallas. She returned to Los Angeles excited.
The lack of follow-up over the ensuing months after the conference, however, disappointed her. Still in frequent touch with Rimland, she had expected that the members of the Dallas group would start pulling together fund-raisers and building a treasury to pay for formal studies. After all, they all wanted to build more solid evidence for their ideas in order to enhance their acceptance. But it didn’t happen. Reluctantly, Portia concluded that, as much as she admired Rimland, she should stop counting on him to organize the sort of effort she had envisioned.
Her husband shared that frustration. None of the effort was helping Dov, and that was the priority. One night, as Jon lay spread out reading the newspaper, she sat at the foot of their bed folding laundry. Suddenly he looked up and announced, “We’re going to have to start our own foundation.”
Cure Autism Now launched in March 1995. In the space of a year, America had acquired two autism organizations, one in Princeton and one in Hollywood, devoted to precisely the same thing.
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AT THE “MERGER” LUNCH, the argument had erupted when Eric London offered his opinion that, by calling their group “Cure Autism Now,” the Hollywood pair was raising false hopes.
For a moment, Jon just looked at him.
The four of them were still new at this. They had only just learned about one another’s existence. Neither couple had funded a single study yet. Karen, Eric’s wife, was the most enthusiastic about joining forces, which could multiply both groups’ influence and reduce competition for funding. She and Eric had already approached the Autism Society of America about working together but had been turned down. ASA had spurned a similar feeler from Jon and Portia. ASA at the time was not interested in funding biomedical research.
Merging seemed a real possibility, but then Jon and Eric got into their debate about hope. Five years could go by, Eric said to Jon, and there might still be no cure. What would Jon think then? he wanted to know.
“I’m going to think it’s even more appropriate,” Jon snapped.
Eric did not know it, but the “false hope” argument was one Jon heard all the time. He loathed it. “If you are a young parent,” Jon went on, “and you don’t have hope, you won’t stay married. You won’t keep living if you don’t have something to live for.”
Fa
ilure is not an option, Shestack insisted to the doctor across the table. To London, this made no sense; he knew that in science, failure was almost always part of the process.
And therein lay the important difference. In 1995, Jon and Portia wanted to “hurry up science” in time to cure their own son. Eric and Karen accepted Zach’s autism as a fact, but wanted good science done now for the sake of future generations.
The meal ended after some further stilted conversation. Jon and Portia had made it clear by now that Cure Autism Now would go on being independent. As the two couples said goodbye, Eric threw out one last peace offering. He invited Jon and Portia to send him a fax if they changed their minds.
No fax ever came.
37
THE MAGIC MAN
He was known in medical circles as the “magic man,” and he wore his hair in a braid.
The year 1997 was his first on the house-call tour, when he journeyed all over California. Then, he struck out for the rest of America. In 2000, the magic man covered 2,500 miles and seven states in the first three weeks of January alone. Not fond of airplanes, he traveled by train, and then by rented car, driving alone surrounded by empty coffee cups and crumpled maps, a list of kids on the seat beside him. Back in the trunk, he had his specially designed suitcase packed full of glass vials to hold the blood.
Ed Berry was a phlebotomist—a professional collector of blood. He was called “magic” because of his rare gift for working with kids with autism—he could get the needle in and the blood out without the kids being traumatized. Berry had no gimmick. He simply went at it gently, smiling all the way, and the kids, for whatever reason, seemed to know they could trust him.
Berry’s blood-drawing tour, with stops and starts, took seven years. He went into posh neighborhoods in New York and Chicago as well as suburban tracts in Virginia and Texas. He spent a good deal of time in rural America. Once, with Port Huron, Michigan, in his rearview mirror, he set out for a drive that turned out to take hours, down dirt roads, to a spot in the Michigan wilderness where one tiny, solitary house was home to triplets with autism. At least, for that effort, he came away with three sets of vials filled.
It had been more than twenty years since those parents in Washington had made that rushed, almost naïve attempt to probe autism’s organics in only five days—hiring that van to race back and forth between the hotel and the clinic, running the kids through a gauntlet of tests in only forty-five minutes.
Doubtlessly, there was also something quaint in the prospect of a phlebotomist in the year 2000, renting a car to bounce all over the country, to pay visits to homes where more than one child with autism lived. The plan was to create a master library of genetic material, something that had never existed before. This “autism genetic resource exchange” would be used as a lure for scientists, to get them to start investigating autism as a story told in human DNA.
Unorthodox, improbable, and fraught with potential pitfalls, the scheme was cooked up by two autism parents, the Hollywood couple who believed that trying something like this—hiring Ed Berry and sending him on the road—would help them “hurry up science.”
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IT WAS NOT until July 1996 that Eric and Karen London mailed out their first set of RFPs—requests for proposals—to several research institutions across the United States. These were the formal invitations to research scientists to encourage them to make a bid for NAAR funds by making attractive proposals for research. They set an October 15 deadline for responses.
In the two years since NAAR had been founded, the Londons had continued to assemble a top-caliber advisory board, and had begun putting together an honorary board of celebrities who would provide endorsements and glamour, such as NFL football player Dan Marino and jazz trumpeter Wynton Marsalis. The Londons also made continuous rounds of autism conferences and support groups, explaining NAAR’s purpose and making their first appeals for donations.
At first, there was a trickle of small checks. But in December 1995, when the Manhattan chapter of the Autism Society of America decided to select NAAR for its Christmas appeal, money started arriving in larger chunks, starting with the $13,000 raised when Marsalis performed a small benefit concert for the cause. Then, two separate donations of $30,000 rolled in. By the end of 1996, a single anonymous contribution of half a million dollars had turned NAAR into a scientific powerhouse. The Londons were able to rent a real Princeton office, instead of just a mailbox, and hire their first staff members. Most important, they could begin giving away money to researchers.
Now they just had to wait to see what sort of responses would arrive in their new offices. The RFPs had been sent to dozens of centers conducting biomedical research all across the United States and the rest of the world. But that did not guarantee that anyone out there had any funding-worthy ideas for autism research—or the slightest interest in the subject. It would be a letdown if a lot of bad proposals came back, but it would be an embarrassment if none came back at all. And with only a few weeks to go before the October 15 deadline, that was how many had arrived in Princeton. None.
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HOLLYWOOD CONNECTIONS WOULD count for a lot for Cure Autism Now, especially during the organization’s early days, when CAN was in a hurry to build up its bank account. In late 1995, Jon Shestack began calling up friends in the business to solicit dollar contributions and found quite a few ready to write hefty checks. One of them—actor Anthony Edwards—went further. Edwards had worked with Jon on the 1984 film Revenge of the Nerds, and he had just had his big breakout on television, playing an emergency room doctor on the hit TV medical drama ER. Because he played a trustworthy physician, Edwards often found himself chased by charities seeking his endorsement of their causes. Because Shestack was his friend, Edwards went with Cure Autism Now.
Though not an autism parent, he brought to CAN what Dan Marino and Wynton Marsalis brought to NAAR—a glitter factor, combined with real conviction. Edwards went out of his way to keep show-business contributions coming in, hosting fund-raising events and talking about autism to the Hollywood press. He was perfectly on message—the message of impatience. “The goal is to put ourselves out of business and cure autism,” he once told USA Today, “not in a week or a month or whenever the scientists can get around to it—but NOW!”
As private donations poured in—beginning with an opening fund-raising event that netted $75,000—Jon Shestack also turned his energies to making taxpayer funds more available for autism research. It was in these years that Jon discovered his talent for political lobbying. It played to his gift for telling a story, while the energy and focus it required gave him a way to channel and vent his frustration over the fact that his son Dov was still a boy in need of a cure. Governors and legislators alike came to know Jon’s unique passion. At one time or another, they all had the photo of Dov held in front of their eyes. Jon made it so difficult to say no to him that, years later, when Congress passed a bill authorizing nearly a billion dollars over five years for autism research—the landmark Combating Autism Act of 2006—a big part of the credit belonged to Jon Shestack.
Much earlier, Anthony Edwards had helped in another way—by turning Jon into the political persuader he became. Once, when US Senator Bill Frist was resisting a funding bill Jon wanted passed, Edwards intervened. He invited Frist, who happened to be visiting Los Angeles, to take a backstage tour of the ER set. Frist, who was a practicing surgeon before going into politics, was a big fan of the show. When he stepped into the fictional “residents’ lounge,” he found himself transported back to his own early days of training, where the chairs had been the same shabby, slashed specimens the set designers used for the ER set. Edwards could see the senator was enjoying himself. Thus warmed up, Frist was introduced to Jon, who was also on set and had brought along Dov. They all posed for pictures, and Jon made his pitch to get Frist to support the bill. Frist went one better than that and joined a group of senators leading the charge for its successful passage.
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sp; Such transactions, however, much like the fund-raising, ultimately required that Jon and Portia, and by extension CAN, be taken seriously—an assumption that could not be taken for granted. Indeed, the proposition that autism parents could conjure up a research field out of nothing but their own passion seemed implausible on its face. And the idea that parents would make key decisions about which scientific studies should be paid for with the money available—even if the parents raised it themselves—was easily dismissed as an amateur’s pipe dream. The greatest threat to CAN’s mission, in the beginning, was that it would merely be ignored. Indeed, some of the organization’s early moves almost ensured that result.
Portia had continued putting her energy into mastering the scientific dimension of their operation. In addition to reading and trying to understand the books and papers she was studying, she also took on most of the task of creating CAN’s organizational shape and filling its ranks. Like Eric and Karen London, she started with the idea of building a scientific advisory board, so she turned to people like those she had met in Dallas, scientists who had entranced her with their readiness to break the rules and to take risks on therapies even before the science on them was fully in. CAN’s commitment to alternative therapies endeared them to parents who were frustrated with mainstream practice, though, to some eyes, this also ran the risk of making CAN appear close to the medical fringe.
Early on, Portia and Jon established a clear, nonnegotiable but highly unconventional guideline for any science that CAN would fund: it needed to be approved by nonscientists. At its founding, CAN established a second advisory board that would be made up almost entirely of parents, who would have final say on what research Cure Autism Now funded. This was an attempt to ensure that any research CAN funded had a “direct relevance to autism,” as experienced by people who lived with autism. A study on sleep, for example, might not occur to a young lab researcher who had never spent a night in the home of a child with the condition, but almost any autism parent would be able to point out the close link between autism and sleep disturbances. CAN wanted the science to respond to the direct experiences of families and their insights about autism. It was CAN’s rule that any project bear high odds for “concrete clinical findings that can make a direct impact on the lives of families.” But this degree of parental control over scientific decision-making—which NAAR did not replicate—was likely to scare off many established scientists.