Letting Go of Asperger’s
Months after our son was diagnosed, the label officially disappeared. And that turned out to be a good thing.
In January 2013, a psychologist diagnosed our 10-year-old son, Jacob, with Asperger’s syndrome. Four months later, the American Psychiatric Association declared that Asperger’s was no longer a valid diagnosis, and removed it from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The about-face stung, not least because my husband and I had procrastinated for so long before having Jacob evaluated. Many parents would have been on the case much earlier. Our son, after all, was growing up during the years when Asperger’s—officially added to the DSM in 1994—was assuming the status of a signature disorder of the high-tech information age. In 2007, the year Jacob turned 4, a pair of Asperger’s memoirs arrived on the New York Times best-seller list. Their authors accomplished what those with the label weren’t supposed to be able to manage: they vividly shared the view from within, and helped to define the type. John Elder Robison’s Look Me in the Eye and Daniel Tammet’s Born on a Blue Day introduced the world to two eccentric but also enviable minds, one gifted with machines and the other with numbers.
The term Asperger’s was becoming shorthand for hyper-focused, often precocious talent and a socially awkward personality—a potential lonely misfit or even, as Nora Ephron once wrote, a “prick,” the kind of guy who might cook up a social-media site in his dorm room to take revenge on some girl who had spurned him. Who needed all that baggage? Not us, I figured, and not Jacob, though it was easy enough to spot the symptoms, starting with his very early and intense obsession with letters, which he seemed to relate to more easily than he did to his peers. Several years later, he was deep into programming languages and still having trouble getting on anybody else’s wavelength. This was obvious to us. What, we asked ourselves at the time, could a label teach us about our son that we didn’t already know?
But after a few years of resorting to elaborate, novelistic descriptions to explain him to teachers and friends, we began to wonder whether some more officially recognized category, even if flawed, might be helpful. It turned out to be more useful to us than we had expected. In fact, almost the minute we got the diagnosis, my resistance to labeling melted, and so did my husband’s. We walked willingly into another world, with its own language, rituals, and worldview. This was our version of the transformative experience Robison had described in his memoir. “It did fit me. Completely,” he wrote of the diagnosis, which he received at the age of 40. “The realization was staggering. There are other people like me. So many, in fact, that they have a name for us.” We found a summer day camp for Jacob specifically designed for people like him. This fall we moved him from public school, where he was struggling, to a private-school program that has the word Asperger’s in its name and a curriculum that integrates social and emotional learning into every lesson—that caters, in other words, to a population that technically no longer exists.
It was a little like being an agnostic who finally turns evangelical, finding comfort and guidance in a new fold, at just the moment when the Bible is exposed as the work of false apostles. What should one believe now? How does a culturally entrenched identity accommodate such a swerve? Once we—along with everyone else—had embraced a category as vivid and special as Asperger’s, it was hard not to appreciate the clarity and attentive care that came with it. I wasn’t alone in trying to navigate a landscape in flux, I discovered as I read a new round of books by Robison, Tammet, and Temple Grandin, whose Emergence: Labeled Autistic (1986) had offered the pioneering account of life on the high-functioning end of the autism spectrum. A year later, with their books fresh in my mind, I can say that the diagnostic shake-up could not have been better timed.
The American Psychiatric Association expunged Asperger’s in large part because studies revealed little consistency in how the diagnosis was being applied. A review of 12 university-based sites showed that children with similar test scores and profiles received different diagnoses. Whether a child was labeled as having Asperger’s or diagnosed instead with autism, or some other developmental disorder, depended mostly on the clinician’s somewhat arbitrary interpretation. After much debate, the APA decided to simplify the diagnostic process, or perhaps more accurately, to complicate it in a democratic way.
The new edition of the Diagnostic and Statistical Manual of Mental Disorders reduces the main criteria for autism to two factors: impairment in social interaction and social communication, along with repetitive behavior. Severity is assessed based on the extremity of a child’s symptoms—the degree of difficulty he or she has initiating an interaction, for example, or the intensity of a particular sensory fixation. The normal IQ and language fluency that set most children with Asperger’s apart have been relegated to a descriptive footnote. In short, the model no longer grants the special status that the Asperger’s label once supplied to a high-functioning cohort. But as a consolation to everyone else, you could say, the newly explicit spectrum thinking gives at least the illusion that there are no fixed boundaries at all. Taken to its logical extreme, the perspective implies an unbroken continuum among minds that extends from autism all the way into the realm of the normal.
For John Elder Robison, the revision amounts to an abrupt and unwelcome assault on an all-important identity. “Just like that, Asperger’s was gone,” he wrote in an essay on New York magazine’s Web site. “You can do things like that when you publish the rules. Like corrupt referees at a rigged college football game, the APA removed Asperger’s from the field of play and banished the term to the locker room of psychiatric oblivion.” Robison, who grew up feeling under siege in a deeply dysfunctional family in the 1960s, champions the label and the tribal protection it offers in a “neurotypical” world that he is sure will always stigmatize and misunderstand people like him—and like his son, Jack. Yet Robison’s new memoir, Raising Cubby (that’s Jack’s childhood nickname), turns out to offer vivid evidence that just the opposite is true. The world his son grew up in is welcoming in ways that Robison curiously fails to recognize, even as he recounts them in great detail.
Robison’s book begins and ends with Cubby’s indictment and subsequent trial, as a teenager, for setting off explosives in the woods near his mother’s house. It’s a crisis that fits right into Robison’s narrative of his own embattled youth. As a child, he too set off powerful explosives, and once nearly burned down his friend’s house. As a parent, he presents Cubby’s run-in with the law as a tale of the oblivious outsider becoming an easy target for a “narrow-minded, publicity-seeking prosecutor.”
In fact, pretty much any teenage boy could have found himself in Cubby’s predicament, and as Robison fills in the backstory, he unwittingly describes a culture increasingly attuned to difference in all its varieties. “You’re never going to amount to anything” was the refrain drummed into Robison during his bleak childhood. Cubby, by contrast, was the beneficiary not just of a solicitous family but of increasingly enlightened psychology and pedagogy, and an ever more accepting society. In his earliest years at school, when Cubby had trouble reading, his teachers thought he was slow, or stubborn. But a school psychologist helped Robison and his wife pressure the school into having him evaluated. After that, he was in attentive, therapeutic hands. His parents got him into the Yale Child Study Center, where experts closely observed him and analyzed his academic gifts and challenges. He moved to a Montessori school, where he felt “happy and safe” and “excited about going to class.” Harry Potter turned out to be an opportune cure for his reading troubles. As middle school ended, Robison built a house in Amherst, Massachusetts, so Cubby could go to a good public high school. He struggled with the academics, but his parents spent every extra penny on tutors, who helped him with the disorganization that derails many kids like him. Meanwhile, in the social world of public high school, Cubby was more than accepted. His ability to attract other kids, Robison writes, was “wonderful to behold.” Even more amazing, he managed to land himself a girlfriend at 14, an age when Robison “had only dreamed of holding hands or kissing a girl.”
Perhaps not surprisingly, Jack seems to have emerged into young adulthood sharing none of his father’s defiant need for tribal solidarity. In 2011, the same year Robison published an advice book for fellow Aspies called Be Different, his son took another route into print. Jack, then 19 and at college, ended up in a front-page New York Times article that described his tender relationship with a female student, also diagnosed with Asperger’s. Far from a portrait of barricaded otherness, the story highlighted a quest for mainstream happiness, rooted in human communication and connection.
Daniel Tammet very consciously reorients his identity in a similar way in his new book, Thinking in Numbers. Back in Born on a Blue Day, Tammet embraced his Asperger’s diagnosis, and laid claim to being a prodigious savant whose freakish calculating prowess sprang from a synesthetic relationship to numbers. Whatever the truth of that self-portrait (Joshua Foer challenged it in Moonwalking With Einstein, uncovering evidence of intensive memory training on Tammet’s part), Tammet is now eager to relinquish any claim to extreme difference. He once reduced people to numbers: upon meeting David Letterman, he told him he “looked like the number 117—tall and lanky.” But maturing has been a process of shedding the rigid systems he relied on to categorize a world of intimates, and learning to embrace people in all their elusive and fluid humanity.
In his most moving chapter, Tammet explains how as a child he tried hard to create a “predictive model of my mother’s behavior.” He mapped her movements like numbers on a graph, noting that on Saturdays she would borrow romance novels from the local library, and on Sundays she would drink tea and gossip with neighbors. On an afternoon trip with her to a shoe store to return a purchase, he was sure he knew what she would do. She would choose a male shop assistant—she hated haggling with females. She would complain about the shoes, and her voice would rise to a certain pitch when she explained why she had no receipt. But on that occasion his “real mother bore no resemblance to her model.” She chose a female clerk, and sagged in her seat until the woman took pity on her. Tammet’s 10-year-old self was utterly disoriented by this unfamiliar creature. But as he grew up, he says, “I slowly came to understand how limited and clumsy an approximation was my model of her, how many variables I had not accounted for (whose existence I had not even guessed), and how large and liberating a role chance played in all our affairs.”
His poignant awakening points the way to a broader critique of the categorical modeling of minds that has inspired labels like Asperger’s: try too hard to pin people down, and you risk failing to see them in all their unpredictable particularity. Temple Grandin, who has been warning against “label-locked” thinking for a quarter century now and has never had much use for the Asperger’s designation herself, returns to that message in her new book, The Autistic Brain: Thinking Across the Spectrum. In her view, settling on a diagnosis is not nearly as interesting as taking note of the many permutations of minds along the spectrum. She had always assumed, she explains, that because she was a visual thinker, everyone else on the spectrum was too. But in the course of meeting thousands of people as she gives speeches around the country, she’s concluded that there are as many kinds of thinkers among autistic people as among just about any group. “We’re all individuals,” she writes. “We all have a range of skills, habits, preferences, limitations.” And in the right circumstances, with the right help, those distinctive qualities can propel children beyond boundaries and stigmas—even beyond the need for any diagnosis at all.
Learning how to live with, and without, labels is tricky, as we discovered with Jacob. After he was diagnosed, we were convinced that we had entered a new era of confidence and clarity. We spent the summer operating on a predictive model that was straightforward and always right. If Jacob whacked his little brother, it wasn’t because he was jealous, or because all brothers whack each other, but because he has Asperger’s. When we squeezed in a couple of weeks for him at a “regular” camp, I simply handed the director a fact sheet about Asperger’s, even though it felt a little impersonal. In the fall, as Jacob began fifth grade at his new school, we were swept up in a carefully articulated Asperger’s-focused culture. At the parent orientation, we got the first of many reminders that traits usually considered naughty—inflexibility, inconsiderateness, a low anger threshold—are part of an Aspie’s wiring, and it’s up to us parents to patiently drill new habits into our children.
Initially, we followed the behavior plans rigidly, and if they failed, we were startled: How frustrating and strange! What could be wrong? We set up elaborate incentives, for example, to encourage Jacob to get up on time in the morning without a fight. They worked until he got bored and began to protest, leaving us confused: Should we pile on more incentives, or yell? We began to wonder whether this Aspie-friendly universe we were creating would leave him ill-prepared for the real world, where parents do yell and schools hand out tardy slips if you’re late—and where we hope he will learn to make his way eventually. After a few school gatherings, we knew we had plenty of company in our concern about transitioning from such a tailor-made world back into the more unpredictable one: it’s a refrain among parents and teachers. Like Tammet, we began to deliberately scale back our faith in the model. We hoped Jacob would behave according to plan, but we were no longer shocked or even necessarily disappointed when he didn’t.
Asperger’s is a term I find myself still using a lot—more than I otherwise might, in fact, precisely because the category is now officially obsolete. I’m relieved to feel it’s not a well-bounded identity that sums up my son perfectly and in perpetuity. His program’s director, who always worried that the Asperger’s shorthand minimized the challenges the kids face, is happily contemplating a name change. Jacob, I’m glad to say, couldn’t care less about the new label in his life, which is lucky, because who knows what will ultimately become of it. He is delighted with the kindred spirits he’s found at school, and we’re thrilled. “What’s your IP address?” began his first real, lengthy phone call with one of many new friends. That conversation evolved into a blissful session of sharing tips about Minecraft, and before long he had many invitations for playdates. Still, these days, if he whacks his brother, he gets in trouble just like anyone else.
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