Hanna Rosin’s son Jacob was diagnosed with Asperger’s syndrome four months before it was expunged from the Diagnostic and Statistical Manual of Mental Disorders. Rosin reflects on what gaining, and subsequently losing, a label for her son’s condition has meant:
[A]lmost 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 [John Elder] 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.
But she found the label less useful over time:
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.
The Dish 