by John Donvan
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the doctor who said vaccines were dangerous had been stripped of his license, and that the research he published had been retracted, to make it clear to most people that the whole episode had been one long, confusing, acrimonious misadventure.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
“This 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.
—
ALEX 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.
Music was important to Alex’s family. Both his parents and his younger brother and sister were accomplished musicians. Alex, too, learned to play some piano and clarinet, but his path was atypical. He seemed enamored of playing musical scales over and over, to where he could make them sound beautiful, almost like songs themselves. As for actual songs, he worked them by ear and memorized them, because he couldn’t simultaneously read and play music, which required some feat of hand-eye coordination that was simply out of reach for him.
He had the same problem in sports—he could not master the fluidity and finesse required for any game involving a moving ball. In basketball, for example, he seemed unable to figure out the mechanics of timing needed to interact with other players, in throwing or catching passes, or for building a coordinated play toward the basket. Swimming, on the other hand, suited him—even competitive swimming. Here again, his resilience and determination gave him an advantage, as he put in more hours practicing than anyone else on his team. The physical complexities of the butterfly, the backstroke, and the breaststroke were beyond him. But freestyle, he mastered, and it was enough. When he was in the water, facedown and sprinting, his inability to understand jokes on dry land was no drag on his speed toward the other end of the pool.
Academically, he was competent and, sometimes, creative. To mark Black History Month in his first-grade class, the kids were
asked to pick a historical figure, draw that person’s shape onto a life-size piece of construction paper, and then fill in the details, for mounting on the classroom walls. Alex produced a figure that had no face, and he insisted that it be hung on the wall upside down. This was his depiction of Guion Bluford, the first African American astronaut, floating in space, wearing a helmet, seen from behind. That year, he had an understanding teacher.
Other years, teachers found him exasperating. Alex lacked tact and could not stop himself from declaring teachers wrong on this or that point when he was sure he was right. They did not find this trait endearing. One teacher gave him a time-out for challenging her, even though he was correct on the point. Others had a tendency to see most of his social problems at school as avoidable if he would only make more of an effort to be “normal.” A physical-education teacher, genuinely troubled at seeing Alex bullied so often, suggested to his mother, Mary, that she show Alex how to hold his mouth and lips differently, because the way he did it currently was the cause of ridicule. Another time, the school principal sat Alex down with seven boys who had been picking on him, and apparently aiming for some conflict resolution, she went around the circle asking each child to discuss his grievances. While Alex listened, the seven boys took turns complaining to the principal about how weird and annoying he was.
This infuriated Alex’s parents and led to a change of schools. But at some level, they recognized that both the teachers and the kids were responding to aspects of Alex’s personality that were, in fact, socially disruptive. His approach to making friends was awkward: he would simply walk up to people and ask to be friends. His correcting of teachers reflected, his mother would say, an inability to “see other people’s discomfort.” Moreover, when asked a question, he was unable to see where the teacher was leading, as other kids might, because he seemed to lack any insight into another person’s thought process. His difficulty making eye contact, meanwhile, degraded the quality of the give-and-take he could achieve with whomever he was trying to engage in conversation.
None of these social ineptitudes—any more than his physical clumsiness—were Alex’s fault. They did not arise because he was not trying hard enough to be more “normal.” In truth, he would have had no idea how to do that. Neither did they stem from his parents’ failure to make Alex “measure up”—something that was hinted at from time to time by school authorities. But they were liabilities that detracted from his obvious strengths: his high intelligence, his creativity, his resilience, and his determination.
By the third grade, Alex’s parents had brought him to several specialists for evaluation. Once, this produced a diagnosis of a communication disorder. Another time, his parents were told he had ADHD—attention deficit hyperactivity disorder. Obsessive-compulsive disorder was also diagnosed. To his mother and father, none of these captured what it was that made Alex different. Not one explained why his young life was such a social obstacle course. If “it” had a name, they still did not know what it was.
The first time they heard the term Asperger’s syndrome was from a psychiatrist in Charlottesville in 1995. They were reluctant to see their son placed too neatly “in a box,” as Mary thought of it. At the same time, they had to admit that the diagnosis, which had just appeared in the DSM the year before, captured Alex’s mix of behaviors quite well.
The weight of the word “diagnosis” hit the nine-year-old Alex hard, as he had a child’s sense of its meaning. To him, it said “defective.” It felt shameful.
It also made him feel further isolated. This was a feeling his parents also experienced when the diagnosis came in. ADHD and OCD were at least familiar; they were conditions that were reported about on television and in magazine stories. But this diagnosis was different. Asperger’s had such a mysterious ring to it, so foreign and yet simultaneously so particular. They knew of no other children with the label. There were no books about it in the library. In the academic literature, most of the studies treated the condition as preciously exotic or hopelessly arcane, reports with titles like “Asperger’s Syndrome: A Report of Two Cases from Malaysia,” or “Possible Asperger’s Syndrome in a Mentally Handicapped Transvestite Offender,” or “Corticocallosal Anomalies in Asperger’s Syndrome.”
A mother in Delaware named Barbara Kirby went through the same thing when her son received the diagnosis in 1993. Her pediatrician didn’t know anything about Asperger’s, and her local autism group, when she inquired, had only “heard of it” and did not have any further information. She even called doctors at local hospitals, all of whom said they had never seen a case. In frustration, Kirby went online in the hopes of connecting with anyone who might have experience with Asperger’s. In late 1995, she set up the first online discussion group devoted to the subject, which she named OASIS. Its plain-speaking approach to the topic and its supportive atmosphere filled a previously invisible need. Traffic climbed quickly, as five thousand families signed up as members. By 2001, visits to the site had hit 1 million. That year, Kirby described OASIS as “the central meeting place for families whose children were diagnosed with Asperger Syndrome.”
That remained true for some years. But in 2004, an Asperger’s site appeared that broke new ground in cyberspace by taking off as a gathering place for people who had—or thought they had—the syndrome. So successful and visible was the startup that it helped effect a dramatic change in the way Asperger’s—and autism in general—were talked about and perceived. The site was the work of a teenager: the seventeen-year-old Alex Plank, who came up with a clever name for his new media venture: Wrong Planet—also known as wrongplanet.net.
He built it for one reason: he wanted company.
—
BY HIS LATE TEENS, Alex had come to terms with his diagnosis. He was finally in a high school that was more accommodating to his differences, and he was happier overall. When he landed a part in the school production of West Side Story, he found that he loved this sort of structured collaboration, as well as the spotlight. Typically, for some people with Asperger’s, he was also drawn to computers. He spent hours teaching himself to program and was an avid contributor to Wikipedia as one of their volunteer fact-checkers. He made corrections to thousands of its entries.
But none of these activities addressed his sense that he was the only person he knew with Asperger’s syndrome. He had hoped that going online would help him find others like himself, with whom he could interact and swap perspectives of what it meant to live life with the Asperger’s label. He found plenty of sites devoted to Asperger’s filled with the parent perspective, but he wasn’t finding other people with Asperger’s anywhere.
Then he had his big idea. During the early summer of 2004, in the midst of one of his periodic stays with his grandparents near Washington, he hit on the idea of a website that would pull other people with Asperger’s toward one another. For a month, he biked to the local library, because there was no Internet at his grandparents’ house, and set up the basic infrastructure for Wrong Planet using his budding programming skills. The site went live in July 2004, billing itself as “a web community designed for individuals with Asperger’s Syndrome.”
By July 20, a little over a month later, it already had 328 members. By November, it had 694. The following March, it passed 1,000. And by January 2007, 8,156 people had joined. As its forums filled with thousands and then hundreds of thousands of postings—on topics ranging from school to bullying to dating to computers—the site was discovered by the Washington Post, which ran a profile on Alex in 2005. TV appearances on Good Morning America and Fox News would follow the next year. Alex was initially overwhelmed by how quickly things were moving. He had never expected Wrong Planet to be much more than a small support group. But the Post was crediting him with “creating an Asperger’s community,” one with its own personality—and personalities. Cliques formed at Wrong Planet. Feuds were fought. Romantic relationships were sparked. Some marriages were recorded. That in itself was remarkable, since so many of
the consistent themes in its forum pages came in postings that reflected their writers’ despair over ever having a romantic relationship.
In 2005, pondering why Wrong Planet proved so appealing to its audience so quickly, Alex explained to the Post that “chatting online allows people [with Asperger’s] not to be worried” by others’ judgment of their speech or mannerisms. The social pressure was off.
But something even more fundamental was in play, which related to having Asperger’s: online, eye contact didn’t matter. Or any of the other ephemeral aspects of nonverbal speech—the eyebrow raises, the subtle changes in intonation that were part of conversation in the real world and that had always caused trouble for Alex and his community. Pure communication by text, however—the idiom of the Internet circa 2005—liberated Wrong Planet’s users from that burden. Overall, for anyone who struggled with facial and vocal cues, the Internet was an equalizer, because in a chat room, no one knew you had Asperger’s.
Alex Plank, then, facilitated the emergence of a new set of voices in the global conversation about autism—and just at the time when that conversation was getting the attention of a much wider public. After 2000 or so, because of the vaccine scare, curiosity about autism continued to grow. To the news media, the phenomenon of individuals who could talk about autism from firsthand experience was fodder for endless reportage. Wired magazine’s Steve Silberman wrote a celebrated article, “The Geek Syndrome,” featuring a number of such people, while suggesting they made up a significant percentage of the tech industry population in Silicon Valley. A British author, Mark Haddon, published a bestselling novel, The Curious Incident of the Dog in the Night-Time, whose narrator was a fifteen-year-old boy with all the hallmarks of Asperger’s syndrome. The book proved so popular it was eventually made into an award-winning play running on Broadway and London’s West End.