Dr. Coplan continues his review and commentary on NeuroTribes by Steve Silberman.

Leo Kanner – Mixed Decision (part 2)

Revisit Part 1.

For decades, Leo Kanner sought to perpetuate the notion that autism – “his” pet diagnosis – was a rare condition. In his book Silberman cites numerous examples of Kanner’s tendency to gloss over or dismiss the descriptions of children with autistic features by other researchers, as well as his tendency to limit the diagnosis to only a tiny fraction of the children referred to him. Why did he do those things? The joke at the head of this blog post does not appear in Silberman’s book, but it speaks to the motive (as Silberman sees it) for Kanner’s behavior: Rarity begets power. As long as autism remained rare, and as long as he cast himself as “Innkeeper,” Kanner was assured a leading role in the world of autism. And this is exactly what happened. (The joke, by the way, is a venerable example of Jewish humor. Jews are capable of barbed self-deprecation – in this case, being “sharp” over money – in a manner that would come across as anti-Semitic in the mouth of a non-Jew.).

Kanner’s desire to retain intellectual ownership of autism, and his insistence that it was rare, dovetailed with the American Psychiatric Association (APA)’s desire to “operationalize” all psychiatric diagnoses; i.e., to provide formal criteria, rather than relying on the hitherto accepted but fuzzy “impressions” of analytic psychiatrists. Silberman provides rich insights into the evolution of the Diagnostic and Statistical Manual (DSM) – the “bible” of American psychiatry. Historically, this volume had served merely a catalog, used primarily for administrative purposes (i.e., to tally how many patients with various diagnoses were under care at residential treatment facilities). With the publication of DSM-III in 1980, however, psychiatrists were expected to document that their patients met specific criteria for any given diagnoses (including the newly introduced diagnosis “infantile autism”). This sounds nice in the abstract, but necessitated selecting for the most severe features of autism as defining criteria. After all, the milder a child’s symptoms, the harder it would be to be really sure that the child had autism. Therefore, DSM-III required the presence of continuous, bizarre behaviors, of the type only seen in the most impaired of children, in order to qualify for a diagnosis of autism. In technical terms, DSM-III sacrificed sensitivity – the ability to find everybody with autism, for specificity – the ability to limit “false positive” diagnoses. This is acceptable in research settings (where the primary goal is to assure homogeneity of the sample), but unacceptable in clinical settings (where the primary goal is to detect everyone who might need services).

DSM-III’s focus on diagnostic reproducibility inevitably selected for the most severely affected children – diametrically opposite from Asperger’s need to emphasize his higher functioning patients, while downplaying his more severely impaired subjects, lest they be sent to the gas chamber. Thus arose the false dichotomy between “Kanner Syndrome” (i.e., autism as defined by DSM-III) and “Asperger Syndrome,” and the more subtle, but even more damaging false dichotomy between “abnormal” and “normal.” The DSM, as a medical reference work, insists on adhering to the old-fashioned “medical model” of health vs. disease, normal vs. abnormal. Although DSM5 criteria are significantly broader than those of DSM-III, DSM5 emphatically rejects “sub-clinical” or “compensated” ASD. According to DSM5, although treatments may enable persons with ASD to “mask” their symptoms, one must remain “significantly impaired” in order to qualify for an autism diagnosis. There is no such thing as “well-compensated autism” within the DSM5 universe. Despite DSM5’s insistence on a sharp boundary between “normal” and “abnormal,” Mother Nature recognizes no such line. In fact, there are lots of “well-compensated” adults with ASD, living full lives. Furthermore, the features of ASD shade over, imperceptibly, into “normal,” with no bright line between “autistic” and “normal.” (Lorna Wing, who coined the term “Asperger Syndrome,” correctly observed that Mother Nature “smudges the line.”) By insisting on such a line, however, DSM5 places children and adults with relatively mild ASD at risk for being pushed out of the boat. What is the solution? More next time.

James Coplan, MD is an Internationally recognized clinician, author, and public speakerin the fields of early child development, early language development and autistic spectrum disorders. Join Dr. Coplan on Facebook and Twitter. Have a question for Dr. Coplan? Ask the doctor.