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|The Long Shadow of Trauma - Page 3|
In the late Ô80s, van der Kolk became one of the central players in the laborious spade work for getting some sort of "complex PTSD" diagnosis into the DSM-IV to be published in 1994. He and his colleagues worked with Bob Spitzer, the "father of the DSM," to define a new diagnostic entity, which Spitzer inelegantly called "diagnosis of extreme stress, not otherwise specified" (DESNOS), As co-chair of the DSM-IV PTSD Committee field trial, van der Kolk was commissioned by the American Psychiatric Association to conduct a study to examine the validity of DESNOS as a psychiatric diagnosis. Between 1990 and 1992, his study group reviewed hundreds of studies demonstrating the connection between childhood trauma and psychiatric disorders in adults, hypothesized plausible symptom criteria sets for the new diagnosis, used a battery of assessment instruments to test it on more than five-hundred patients at five outpatient psychiatric facilities—basically comparing people with extensive histories of childhood abuse with adults traumatized by natural disasters. The goal: "to see if people who had been traumatized by long-term interpersonal childhood violence looked different from people who had been traumatized by one-shot traumas."
The answer was a dramatic: yes, indeed they did. The participants with a history of interpersonal childhood sexual and physical abuse were "vastly different" from the disaster victims with simple PTSD. The former showed the same mish-mash of symptoms van der Kolk, Herman, and other therapists had seen for years in patients with histories of seriously abusive childhoods—inability to regulate their emotions, self- destructiveness, dissociation, amnesia, suicidality, shame, hopelessness, despair, wide-ranging somatic complaints, and so on. These people almost always also had PTSD symptoms, and yet, according to van der Kolk, "What brought them to treatment was not their PTSD symptoms, but their DESNOS symptoms." In short, to the advocates for the new diagnosis, the evidence seemed inescapable that DESNOS was real.
Then began a voyage into the Byzantine politics of DSM. The DSM-IV PTSD Committee voted 19 to 2 in favor of accepting the new diagnosis in the new manual. It looked like a slam dunk. And then . . . nothing. "The diagnosis went up the chain via various DSM committees and then disappeared—it didn't make it into DSM-IV," van der Kolk says ruefully. "It was over-ruled at higher levels," Herman wrote cryptically in her groundbreaking book Trauma and Recovery. But why? It appears that what most bothered the critics of DESNOS was its diagnostic messiness—its tendency to leak into so many other disorders. DESNOS seemed to smash virtually all the boundaries between diagnoses that the publishers of the DSM had been at pains to keep separate since the DSM-III "revolution" in 1980, which neatly both medicalized mental disorders and divided them into distinct, non-overlapping categories.
More than a decade later, epidemiologist Dean Kilpatrick, editor of the Journal of Traumatic Stress, wrote an editorial to a special section on complex trauma that seemed to reflect the viewpoint of the DESNOS naysayers. It was true, he argued, that PTSD didn't capture all the significant post-traumatic problems that could occur, but so what? Disease "classification systems aren't designed to include every symptom associated with a disorder," but the least number required. "Also . . . the fact that the PTSD diagnosis does not capture all responses to traumatic events is not a problem per se because there are numerous other Axis I and Axis II disorders that capture many of the other features that DESNOS and complex PTSD advocates think should be measured." In short, was there really a need for a kind of super-diagnosis that included everything and the kitchen sink, when lots of other perfectly good diagnoses were already available?
To the proponents of DESNOS, this critique and concern for clashing with the goals of the existing diagnostic category system entirely missed the point. Without understanding what Judith Herman called "the underlying unity of the complex traumatic syndrome," many deeply troubled and profoundly victimized people would continue to receive one unrelated diagnosis after another, or all piled up on top of each other, while the traumatic origins of their suffering remained unaddressed.