In 2001, the Cummings Foundation convened a group of child psychiatrists, public policy experts, and representatives from the Department of Justice, Department of Health and Human Services, and Congressional staff to consider the deplorable state of services to traumatized children. This initiative led to the establishment of the Congressionally mandated National Child Traumatic Stress Network (NCTSN).
In order to study the symptomatology of the children seen within the NCTSN, Boston psychiatrist and trauma expert Bessel van der Kolk and his colleague Joseph Spinazzola organized a complex trauma task force. Between 2002 and 2003 they conducted a survey (via clinician reports) of 1,700 children receiving trauma-focused treatment and experiencing the effects of child abuse at 38 different centers across the country.
They found more evidence of what two decades of research had already revealed: Nearly 80% of the surveyed kids had been exposed to multiple and/or prolonged interpersonal trauma, and of those, fewer than 25% met the diagnostic criteria for Post-Traumatic Stress Disorder (PTSD).
Instead, these children showed pervasive, complex, often extreme, and sometimes contradictory patterns of emotional and physiological dysregulation. Their moods and feelings could be all over the place—rage, aggressiveness, deep sadness, fear, withdrawal, detachment and flatness, and dissociation—and when upset, they could neither calm themselves down nor describe what they were feeling.
In 2005, the complex trauma task force—chaired by van der Kolk—began working in earnest on constructing a new diagnosis, called Developmental Trauma Disorder, which, they hoped, would capture the multifaceted reality experienced by chronically abused children and adolescents.
In January 2009, they submitted to the Diagnostic and Statistical Manual (DSM) Trauma, PTSD, and Dissociative Disorders Subwork Group an elaborate criteria set (DSM-speak for symptom list) for Developmental Trauma Disorder: Exposure to prolonged trauma, causing pervasive impairments of psychobiological dysregulation (of emotions and bodily functions, of awareness and sensations, of attention and behavior, of their sense of self and their relationships), as well as at least two symptoms of standard PTSD, and multiple functional impairments (with school, family, peer group, the law, health, and jobs or job training).
According to van der Kolk, the DSM committee responded that the complex trauma task force had “inundated” them with too much data about Developmental Trauma Disorder, but not the right kind: They needed to submit other kinds of data concerning 17 issues, including possible genetic transmission, environmental risk factors, temperamental antecedents, bio-markers, familial patterns, treatment response, and so on.
The DSM subcommittee, chaired by Matthew Friedman, executive director of the National Center for PTSD, wrote that “the consensus is that is it unlikely that Developmental Trauma Disorder can be included in the main part of DSM-5 in its present form because of the current lack of evidence in support of the diagnosis and the lack of prospective testing of your proposed diagnostic criteria.”
The complex trauma task force argued that this was a proposed diagnosis, which didn’t officially exist yet, and so—in that great Catch-22 tradition of DSM—couldn’t qualify for the funding for the kind of research the DSM subcommittee wanted to see. But their argument was still unconvincing.
Though temporarily stymied, the NCTSN task force is by no means defeated. They’ve been able to raise the money for a Developmental Trauma Disorder field trial and enlisted the sites that are able to carry out the required research.
“We’re still going ahead full throttle,” says van der Kolk. “I feel very optimistic.”