In a Different Key: The Story of Autism (73 page)

Suddenly, there were thousands of people like Temple Grandin, all joining in that conversation, congregating at Wrong Planet and other sites, as well as at Asperger’s meet-ups and conferences. Some who took part, however, had never actually been given an Asperger’s diagnosis. Instead, some had been labeled, at some point, as “HFA,” which stood
for “high-functioning autism.” This term, never a
DSM
diagnosis but popular with clinicians, pre-dated the popularization of Asperger’s and was epitomized by Temple Grandin, who
describes herself that way on her own website. “High-functioning” was used for individuals who had definite autistic traits but who were also at least average, and often above average, in verbal skills and IQ scores. This made HFA sound a lot like Asperger’s, and in fact, one of autism’s most intense debates at one time focused on whether any meaningful difference existed between HFA and Asperger’s.

For many, discovering they had Asperger’s was like being handed the missing piece that completed the puzzle of their own lives. Their families saw it that way too. Lorna Wing spoke of husbands who showed up at her clinic to be evaluated for Asperger’s, bringing along their wives, who had just as much of a stake in the outcome. “Both have felt happier and closer to each other once they know the
reasons for their past problems,” Wing wrote.

As Wrong Planet’s subscriber base surged, an identity constructed around Asperger’s was already a
well-established cultural phenomenon—from its expression in the arenas of policy and politics to Hollywood taking chances on shows with “Aspergian” characters to the online swag shops selling coffee mugs, hairbands, curtains, tote bags, and T-shirts with an “Aspie Pride” theme to them. One popular T-shirt read:
SOCIALLY AWKWARD, INTELLECTUALLY ADVANCED
.

“Surely everyone is a little bit autistic on occasion?” Uta Frith asked. “I too would sometimes like to claim a
dash of autism for myself.” Indeed, it became popular to see Asperger’s as sometimes shading so close to “normal” that the distinction seemed at risk of losing much of its importance. This idea had all kinds of appeal. Potentially, anyone could dip a toe into spectrum waters from time to time: anyone who never got the jokes everyone else found funny; anyone who got ribbed for being a stickler for the rules; or anyone who just had a difficult time making and keeping friends. There was respite, and some satisfaction, in being able to tie these occasional traits to a
DSM
-sanctioned diagnosis.

This was even more true as some “Aspies” began to claim a certain superiority for themselves, turning the disability prototype upside
down. Temple Grandin liked to say that the first stone spear “was probably invented by an Aspie who chipped away at rocks
while the other people socialized.” She was far from the only person reporting from the spectrum who made the case for a touch of autism being a good thing.

In this view, the autistic brain was uniquely capable of original thought and had the perseverance needed to develop world-changing ideas. It became something of a parlor game for people identifying as Aspies to compose lists of historical figures whose contributions to knowledge and culture they credited to the supposed presence of autism. Some of the more illustrious names included Albert Einstein, Isaac Newton, Emily Dickinson, Abraham Lincoln, Michelangelo, Mozart, and Van Gogh. An entire book, Norm Ledgin’s
Diagnosing Jefferson
, which had a foreword by Temple Grandin, was devoted to attempting to prove that America’s third president had Asperger’s syndrome, and that this was
“the only explanation for the full range of Jefferson’s idiosyncrasies.”

“Now it’s almost cool to have Asperger’s,” Tom Hibben, the father of a boy with Asperger’s, would tell
Slate
.
On his own blog, called
Adventures in Aspergers
, Hibben wrote about TV sitcoms such as
Parenthood
and
The Big Bang Theory
, whose casts had characters with autistic traits and were “showing the masses that these kind[s] of people are not only productive members of society but they are awesome!” As early as 2001,
Wired
was inviting readers to “Take the AQ Test,” offering a fifty-item questionnaire, based on one used by leading researcher Simon Baron-Cohen, “as a measure of the extent of autistic traits in adults.” Item 13 read: “I would rather go to a library than a party.”
Wired
included the necessary warning that “the test is not the
means for making a diagnosis.”

In fact, amateur diagnosis of autism became something of a trend. The writer Nora Ephron was quoted posthumously in
New York
magazine in 2012 telling a friend in an email, “I notice that at least three times a week I am told (or I tell someone) that some man or other is on the spectrum.” The article’s author, Benjamin Wallace, suggested Asperger’s syndrome—which he believed to represent a truly disabling set of behaviors in some people—was being trivialized into “common slang,
a conceptual gadget for processing the modern world.” As
Wallace argued, standards of stringency in diagnosis seemed to be slipping in how the label was becoming “shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal.”

Wrong Planet, meanwhile, hosted a thread devoted to self-diagnosis, where members explained why they were declaring themselves, without a professional evaluation, to “have Asperger’s.”
New York
’s Wallace took a skeptical view of this trend in the 2000s.
“The self-diagnosis boom,” he wrote, “has been accompanied by self-diagnoses that can be bracing in their un-persuasiveness.”

Put another way, not everyone wearing the Asperger’s label appeared to be held back in life by an undue dose of social clumsiness. It would be easy for a general audience to watch Alex Plank, articulate, witty, and relaxed, discussing disability on
Good Morning America
, then come away asking themselves, “What disability?” In that blur where autistic meets “normal,” Plank would impress a lot of people as fitting the “normal” category, where, if anything, his string of successes as an Internet entrepreneur, video host, and motivational speaker would suggest he possessed, on the contrary, rather well-developed social skills.

Had Alex been born just one generation earlier, the chances of his success story being associated with the word “autism” would have been virtually nil. Indeed, it is hard to imagine that a clinician examining someone as talkative, innovative, and driven as Alex in 1975 would even have entertained a diagnosis of autism. At that time, the diagnosis was reserved for people facing much greater challenges than Alex or others of his generation who would be given the Asperger’s label. Put another way, before the spectrum, saying that Alex had autism might have seemed a bit like saying that a person who is color blind and a person who cannot see at all should both be described as “visually impaired.” While technically true, it would not have been entirely helpful to group them together.

But Alex was born in the era of the spectrum. And, even though he was high-functioning, his struggles were real. That combination empowered him to declare, with a mixture of pride and defiance, and with affirmation from many, “I have autism.” Those who saw no evidence of impairment in Alex’s performances in front of big audiences were
likely not aware of what his childhood was like, or of how much his hit-the-jackpot success with Wrong Planet had boosted his self-confidence. His social savoir faire as an adult was the result of assiduous effort and practice he put in during his teen years, when he actively studied the behaviors of other people—their expressions, their tones of voice in given situations—and then memorized them, note by note, like those songs he learned to play on the piano as a kid. In his 2009 documentary,
autism reality
, the twenty-three-year-old Alex appears behind the wheel of a car (he had only just learned to drive) and explains how hard he has to work every moment of every day to “pass” for “normal.”

“I don’t think anyone realizes how much I struggle on a day-to-day basis just with normal social situations,” he says, lifting his hands from the steering wheel momentarily to mark “normal” with air quotes. “It takes
a great expenditure of mental energy.”

—

A
NOTHER PROMINENT
A
SPIE
, Michael John Carley, met his social challenges so successfully that his disability also appeared almost invisible. In fact, he thought of himself as different, rather than disabled. Like Alex, he became known for establishing a place where people with Asperger’s could congregate, but his was mainly offline. In 2003, Carley
founded an organization called GRASP—the Global and Regional Asperger Syndrome Partnership—which sponsored in-person support groups for adults with Asperger’s. At this time, many adults were being newly diagnosed, and Carley was one of them. He was thirty-six in 2000 when his young son was diagnosed, and then, days later, he was told that he too qualified for a diagnosis.

Carley was a gifted writer, a produced playwright, and a competent guitarist who sometimes performed in clubs, and he had also worked for a series of nonprofits and participated in aid projects overseas. But when he got the label, it felt right to him, and he embraced it. “I’d always suspected,” he told radio interviewer Terry Gross in 2004, “that I really didn’t have the sense of shared experience with other people that I had wanted and yearned for in my life.” He also said that he was not good at small talk, and was too given to telling people what he really thought.

It was Carley’s recognition that others with Asperger’s struggled more than he did that inspired him to start an organization to represent their interests. GRASP soon grew to include thirty chapters around the United States. As its leader, Carley devoted himself especially to fighting back against stigmatization, and to standing by people when their Aspergian tendencies got them in trouble. He befriended the notorious subway hijacker Darius McCollum, a man who was arrested repeatedly for faking his way into the driver’s cabs of New York City subway trains and then hauling the trains across New York’s boroughs with unwitting passengers on board. Truly an expert on the inner workings of the New York subways—their routes, regulations, vehicle numbers, schedules, and signals, which he had studied obsessively since he was a young boy—McCollum never hurt anyone. Whenever he hijacked a train, it still made its scheduled stops. He took off with a few buses here and there too. By 2013, when he was forty-nine, he had been arrested twenty-nine times and
spent nearly a third of his life in jail. Treated relatively leniently at first, he began getting tougher sentences in later years. Judges weren’t buying his new defense: that he had Asperger’s syndrome, and that his compulsive train thievery grew out of an Aspergian obsession that was nearly impossible for him to resist.

During one of his few interludes of freedom, McCollum had dropped in once or twice at support-group meetings at the Manhattan chapter of GRASP. That was where he and Carley got to know each other. When, inevitably, McCollum was rearrested, Carley began visiting him in jail on Rikers Island. As they sat on steel benches on opposite sides of a low wall, Carley mixed solace, understanding, and bear hugs with a kind of older-brother scolding.
What the fuck did you do this time?
—was Carley’s greeting on one of these visits. He repeatedly warned McCollum that he needed to learn to put distance between himself and the temptation that was ruining his life.

On the outside, however, Carley did everything he could to portray the subway obsessive as a victim of his own brain wiring. “We haven’t created anything for him to go to,” Carley told the
Huffington Post
.
“People take one look at him, at his demeanor and his smarts, and they think he should know better. They don’t understand because the disorder isn’t really understood in this context.”

In December 2012, Carley acted quickly when a twenty-year-old named Adam Lanza carried out a massacre by gunfire in an elementary school in Newtown, Connecticut. Within hours, news media outlets were reporting that Lanza, who had killed himself, had a diagnosis of Asperger’s. Alarm spread in the autism community; they feared a renewed narrative that saw people on the spectrum as a risk to public safety. On this occasion, the entire autism community set aside its internal squabbles as one group after another issued statements explaining why the facts did not sustain a connection between Asperger’s and violence against others.

Carley’s contribution stood out, as his often did, for its elegance and power. “We ask that everyone please steer away from getting too caught up in the spectrum angle,” he said in a statement released within hours of the shootings.
“Let us focus instead on mourning; lamenting through grief that such a terrible and tragic event befell us all on this awful, awful day.”

Carley’s diagnosis was Asperger’s. But he could hit an emotional note better than most people. In that way, he was like Alex Plank and so many other people who acquired the Asperger’s label in the 1990s and 2000s—people who exuded competence and a fair degree of confidence as well. Even if he and Plank were constantly working to compensate for social deficits, their success and eloquence only showed that the effort was paying off. By being able to “pass” so often for “normal”—and more important, by exhibiting pride in their difference at the same time—they were in fact “normalizing” autism in the popular imagination. Their ability to get along in the real world demystified and destigmatized the concept.

But their presence in the autism conversation also upset what had been one of its ongoing assumptions.
This was the solid consensus among experts, dating back to the 1960s, that most people with autism were also intellectually disabled. This was a data-based finding, reported in several studies, which found that somewhere between 70 and 80 percent of all people diagnosed with autism also fell into the “below average” range for intelligence.

But then, that was before there was an autism spectrum, back when definitions were different. By 2010, the scale had tipped dramatically
in the opposite direction.
That year, the CDC reported that almost half of the diagnosed autism population hit the upper ranges for intelligence. This “demographic shift,” driven by a combination of the autism spectrum’s greater inclusiveness, which also helped push prevalence rates higher, would have profound social consequences. This recognition of more so-called high-functioning people certainly altered the kinds of services society was called upon to provide for them, which became a new arena for activism. But when the shift took place, something even more radical occurred, which changed the politics of autism for good.