In a Different Key: The Story of Autism (72 page)

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.

—

B
Y 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.

Alex was part of this growing recognition of Asperger’s. He continued running Wrong Planet while attending George Mason University from 2005 to 2009. During those years, he was getting invitations to talk shows and conferences. After graduating, he set out to make documentaries, such as the short film
autism reality
, which found audiences at autism gatherings, at general-interest film festivals, and on YouTube. Eventually, it was Alex’s growing celebrity as a first-person narrator of the Asperger’s “experience” that led to his being hired to work as a script consultant. The protagonist of
The Bridge
was a brilliant police
detective with autistic traits. Alex was there to make sure the writers got autism “right.” The actress playing the detective, Diane Kruger, publicly credited Alex with keeping her honest in her portrayal of the condition.

Before that, however, Alex had already acquired a video platform of his own called
Autism Talk TV
, a series of videos he hosted with two friends who also identified as being “on the spectrum.” Produced over multiple years, and appearing on the websites of both Wrong Planet and Autism Speaks, the videos had a wry, self-aware, and “Aspergian” sensibility to them. There were a lot of insider jokes about the highlights and pitfalls of life lived with Asperger’s, and a good deal of advice for navigating a world where, despite rising awareness, the hosts and their presumed audience were still the odd people out. One episode was called “How to Flirt and Get a Date,” in which, at the beginning, the presenter announced, with a twinkle in her eye, “In this episode, Alex learns to flirt, and Alex will be flirting with
a
real girl
.”

These videos received tens of thousands of clicks, presumably by many of the people they were aimed at. It was their lives Alex’s videos were talking about. Their stories, being told by one of their own. Suddenly, people “on the spectrum” were speaking for themselves, and in a way that could not be ignored. That changed everything.

—

O
NCE, THERE WAS
only one famous person known to be capable of talking about autism from the inside: Temple Grandin. When she was first “discovered” in the 1980s, she startled and fascinated the activist autism community, which was then made up almost entirely of parents, along with a few researchers and educators. She was cherished and regarded as an anomaly for her ability to converse in detail about how the world might be experienced by their own children, the overwhelming majority of whom could never hold such a conversation.