By John Elder RobinsonCrown
By Daniel TammetLittle, Brown
By Temple Grandin and Richard PanekHoughton Mifflin Harcourt
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.