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?