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Wednesday, November 28, 2018

How history forgot the woman who defined autism

In 1925, Sukhareva published a paper describing in detail the autistic features the six boys shared. Her descriptions, though simple enough for a nonspecialist to understand, were remarkably prescient.
“Basically, she described the criteria in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5),” says Irina Manouilenko, a psychiatrist who runs a clinic in Stockholm, Sweden. Manouilenko translated Sukhareva’s original descriptions from Russian to English in 2013 and then compared them with the diagnostic criteria described in the DSM-5. The similarities between the two left Manouilenko in awe. “When you start looking at it all systematically, it’s very impressive,” she says.
For example, what the DSM-5 describes as social deficits, Sukhareva wrote about as a “flattened affective life,” “lack of facial expressiveness and expressive movements” and “keeping apart from their peers.” What the diagnostic manual portrays as stereotyped or repetitive behaviors, restricted interests and sensory sensitivities, Sukhareva explained as “talking in stereotypic ways,” with “strong interests pursued exclusively” and sensitivities to specific noises or smells. In her analysis, Manouilenko was able to match each of the manual’s criteria to one or more of Sukhareva’s observations.
Historians are beginning to ponder why it took nearly a century for the DSM-5 — published in 2013 after years of debate — to arrive back at something so close to Sukhareva’s list. They have found that Sukhareva isn’t the only clinician whose research was overlooked or lost before autism was described in the DSM-III. As more archival material is digitized, it’s becoming clear that Kanner and Asperger may need to share credit for the ‘discovery’ of autism — and that the condition’s history could be as complex as its biology.