In a Different Key: The Story of Autism (71 page)

But the drama of Singer’s split from Autism Speaks also galvanized a good many autism parents who had not previously spoken up in favor of the stand she had taken. Her supporters included mothers and fathers who had grown weary of seeing the vaccine controversy steal the limelight when there was so much else to talk about. Like Singer, these parents believed that science had answered the questions about MMR and thimerosal and that it was time to move on.

Losing Singer was disruptive for Autism Speaks, and not only because she had contributed so much to its establishment and growth. Her departure was a direct and public challenge to the organization’s commitment to serious science. A second blow came a few months after Singer’s resignation, when Eric London also quit Autism Speaks. On his way out, London, who sat on the group’s scientific advisory board,
took a direct shot at that aspect of the organization’s work. “After three years of great hopes for Autism Speaks being the optimal
vehicle to advance autism science and treatment,” he wrote in his letter of resignation, he now felt that the choices made by Autism Speaks “have adversely impacted autism research.” These developments had consequences. The energy Autism Speaks would exert to defend its reputation on the science front became a distraction from its runaway success in its other mission: getting the world to care about autism.

With the vaccine debate, Autism Speaks had run afoul of its own well-intentioned determination not to leave anybody out in the cold. Attempting to bridge the chasm between two polarized constituencies, the organization had been forced into rhetorical somersaults, with a
policy statement that endorsed the “proven benefits” of vaccination, but at the same time pledged to investigate the possibility that vaccines might be harmful. Phrased so as not to alienate either side, it alienated both.

The Wrights were caught in the middle. They gave copious amounts of their personal time to helping families, only to be rewarded with disparagement and disdain from both factions of the vaccine debate. As the most prominent face of the organization, Bob Wright in particular was often called upon to declare himself for one side or the other. As he continued to try to straddle a middle ground, and to shift attention to other important issues, he and his wife were sometimes nastily maligned, especially by believers in conspiracies,
for their “silence.”

Meanwhile,
Autism Speaks’s financial contribution to autism research declined steeply from its peak. In 2009, the group’s direct investment in science dropped to just over $11 million, less than half the 2008 figure, which had marked a high point. Over the next few years, that number seesawed but never came close again to the 2008 level. In some years, the total grant
amount was not much higher than what CAN and NAAR together had been giving out before the merger with Autism Speaks, with its promised synergy.

Soon after her departure, Alison Singer started the Autism Science Foundation (ASF), also with the mission of funding autism research, though not into the
potential dangers of vaccines. That gave the ASF the aura of being a counterweight to Autism Speaks, albeit a small one. More significantly, in terms of money and prestige, an endeavor called the Simons Foundation Autism Research Initiative (SFARI)
entered the arena in 2007, awarding an
average of $45 million per year in grants, eclipsing Autism Speaks and every other autism nonprofit. SFARI, which maintained a deliberately low profile—no television ads, no walks, no lobbying—was funded through the generosity of a single family, whose sole goal was moving forward the science on autism. Truly above the fray, with no public to answer to, SFARI steered completely clear of the vaccine controversy and was respected all the more for that. Without question still the brand name among autism nonprofits, justifiably credited with advancing the cause in many ways, Autism Speaks was no longer the leader in the area of scientific research—partly as a result of the schisms the vaccine debate had created.

Eventually, Autism Speaks did choose sides. In 2015, it quietly deleted its online policy statement about vaccines and replaced it with one that said: “Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be vaccinated.” Posted without fanfare, it felt like a footnote.

—

W
HEN
A
LISON
S
INGER
resigned from Autism Speaks in the winter of 2009, the family of Michelle Cedillo was still waiting for the vaccine court to rule. Seventeen months had gone by, during which the remaining set of test cases had proceeded. Two of them featured children like Michelle, whose parents were claiming injury by MMR and thimerosal acting in combination. A second series of three cases attempted to document thimerosal acting alone. A third series of cases focusing on MMR acting alone was canceled. The first set of cases had explained the mechanisms well enough.

On February 12, 2009, in
a 174-page decision, Special Master Hastings issued a stark ruling against Michelle Cedillo’s claim for compensation. Using italics, he declared it “
extremely unlikely
that any of Michelle’s disorders were in any way causally connected to her MMR vaccination, or any other vaccination.” This decision was not out of any lack of sympathy for her or her parents. Indeed, Hastings
praised them as having a “very loving, caring and courageous nature.” But in his capacity as a special master, he found no grounds for saying that their daughter’s autism was caused by vaccines.

To the contrary, Hastings said, the bulk of the evidence was “overwhelmingly contrary” to the parents’ claims, “concerning virtually all aspects of their causation theories.” So “one-sided” was the case that, in the end, the decision he had to make was “not a close call.”

This was devastating enough to those who believed in the merits of the vaccine theory and those who had spent years promoting it. But then, most unusually, Hastings devoted a sentence or two to scolding those who had helped convince families like the Cedillos to buy into the theory. They had trusted doctors and other specialists whose advice, he wrote, using italics again, had been
“very wrong.”
“The Cedillos have been misled,” he said—misled “by physicians who are guilty, in my view, of gross medical misjudgment.”

It was as harsh as it was blunt. The vaccine theory had failed once again.

One by one, the rest of the test cases also failed. After that, appeals were filed, but they went nowhere. In the summer of 2010, the last of these appeals—brought by the parents of Michelle Cedillo—was denied. Soon the lawyers who had encouraged the parents to sue lost interest, seeing that there would never be a payday. The science simply wasn’t on their side.

—

T
HE YEAR
2010 was a bad one for Andrew Wakefield as well, probably the worst of his career. He had been waiting since the middle of 2007 for the General Medical Council, the UK’s physician licensing authority, to rule on his “fitness to practice.” The investigation had turned out to be
the longest in the GMC’s history, requiring a combined 217 days of hearings, filings, and deliberations, and costing approximately $9 million.

On January 28, 2010, the five-member panel found against him in overwhelming fashion. Three dozen charges against him were upheld. The ruling repeatedly branded Wakefield’s behavior with words like “dishonest,” “irresponsible,” “unethical,” and “misleading.”

In February,
The Lancet
finally fully retracted his 1998 article.
“I feel I was deceived,” complained its editor, Richard Horton, who said it was now “utterly clear” that the paper’s claims were “utterly false.”

In May, at the equivalent of a “sentencing” hearing, the GMC panel found Wakefield not “fit to practice” and ordered him
“struck off the medical register.” This stripped him of his medical license; he would never again work as a physician in the UK.

These two events had a decisive effect on the conversation about vaccines, especially among the vast majority of the public that did not devote hours of study to understanding the details. It was enough to say that the doctor who said vaccines were dangerous had been stripped of his license, and that the research he published had been retracted, to make it clear to most people that the whole episode had been one long, confusing, acrimonious misadventure.

Like the MMR scare he had created fifteen years earlier, the story of Wakefield’s downfall crossed the globe. The news was reported not only in the UK, but on the major American news networks and in newspapers as far away as Australia. Weighing Wakefield’s reported transgressions on the day the GMC panel issued its findings, the
New York Daily News
opined,
“Hippocrates Would Puke.”

After 2010, the mainstream news media virtually abandoned any slant of its own that tended to support the vaccine hypothesis. In most coverage, the word “discredited” became the default adjective.
Time
magazine took this idea to its carnivalesque limit in a 2012 issue listing history’s “great science frauds.” In the number one position: Andrew Wakefield.

He was now as infamous as autism itself was famous—two outcomes that were undeniably intertwined. And while the controversy Wakefield ignited eventually cooled, it left a third outcome in its aftermath: the lasting push it gave to a new set of voices, rarely heard from before, with a fresh perspective on what it means to have autism. Offended by the vaccine activists’ fundamental premise that autism was a kind of sickness and a tragedy, they would turn that proposition on its head, celebrating “being autistic,” and declaring “cure” a dirty word.

As they launched autism’s latest great debate, they would also claim a unique authority to speak on the matter: they were autistic themselves.

PART X

TODAY

44

FINDING A VOICE

“T
his came for you.”

In the summer of 2013, on a Los Angeles soundstage, Alex Plank spoke his first line as a television actor. For months, he had been working as a script consultant for a crime series called
The Bridge
. During that time, he had endeared himself to everybody on the set with his easygoing manner. True, he did keep asking for an on-camera part, but he kept the lobbying lighthearted—as if he knew that this ambition of his would never be fulfilled.

But that summer, an actor was needed on short notice for a walk-on character—“the intern”—who would deliver an envelope to some reporters. After a table read, the producer turned to the casting director and suggested that Alex should get the part, maybe even a line.

Alex’s time on-screen ran eleven seconds. On cue, he strode into the frame, approached the series regulars, and stuck out the envelope. He delivered his line cleanly, then pivoted and made to leave the newsroom.

At that moment, one of the other actors
ad-libbed a line.

“Thanks, Alex.”

The young script consultant was touched that, when the show aired, the ad-lib stayed in.

Plank had just turned twenty-seven when he got the intern role. By that time, he had already achieved a good deal beyond talking his way onto a well-regarded cop show. Before he was out of his teens, he had founded a groundbreaking website and launched an Internet television program. Later, he produced and
directed documentary films and traveled all over the country on the speakers’ circuit.

And it had all come his way, because, when he was nine, a doctor had diagnosed him with Asperger’s.

—

A
LEX GREW UP
healthy, loved, and safe, but his childhood outside the home was a social torment. Born in 1986 and raised in Charlottesville, Virginia, he seemed
ill at ease with his environment even in infancy. He startled easily. He never relaxed into his mother’s arms; it was as if he could not find a comfortable position there. He had no patience for being read to, or for snuggling. There were times when, with his body perfectly rigid, he would scream for hours.

When he was a few years older, more obviously odd behaviors began. Spinning was a major one. Alex twirled and twirled and never seemed to get dizzy. He flapped his hands when he was excited. He covered his ears to shut out sound. At a playgroup his parents put him in, and then in kindergarten, he stood apart from the other children. He appeared to despise group activities, none more so than the game that involved leaping under and over a flapping parachute, which terrified him.

At the same time, though, Alex was hitting all the expected milestones for intellectual development. He started speaking around the normal time, and as a kindergartner, he could count and do some simple addition. When he was later given an intelligence test, the school principal was stunned. She called Alex’s mother to tell her he had recorded the highest score in his school’s history. Still, because of his social challenges, his parents decided to have him start first grade a year later than usual, so he was seven when he started elementary school.

The price for being socially out of step in elementary school was high. Other kids started noticing that he was different and began making fun of him, or bullying him, or, at best, having nothing to do with him. The painful irony was that, by this point, Alex was beginning to
want
to have friends. The shunning, however, was total; friendships and shared interests divided his class and his neighborhood into groups that Alex was left out of. One year, a single boy accepted the invitation to come celebrate Alex’s birthday. He happened to be a
boy with his own challenges, as he suffered from severe allergies. Alex’s mother baked a peanut-free cake to accommodate this one potential friend. On the morning of the celebration, however, the boy’s father phoned to apologize. His son would not be coming after all. Something had “come up.”

Through these years, Alex amazed his parents with his emotional resilience. He weathered the birthday snub by going on a hike with his dad and brother and having a great day despite what had happened. When he failed to find companionship among kids, he found ways to connect instead with adults. He grew especially close to his grandparents, who lived near Washington, DC, and often had Alex over as a guest. Both they and his parents took note of some of Alex’s marked strengths, including an unusual ability to stay focused where other kids grew restless. They could take him to concerts, for example, and Alex, even as a young boy, proved able to sit perfectly still, his attention focused intently on the sounds the orchestra was making.