Many children traverse the terrain of childhood with few major upsets. But an unfortunate number face the opposite fate, suffering repeated and often serious traumas-everything from abuse and neglect to persistent community violence to caregivers impaired by illness, alcohol or depression. No one knows how many children are affected, but one gauge is the number of children reported annually to child protection services for abuse and neglect-3 million. About 1 million of those cases are substantiated, according to a 2003 report by the Administration on Children, Youth and Families.
Yet no one diagnosis adequately captures the plight of these youngsters, and that's why a new diagnosis is needed for them, asserts a working group of child psychiatrists and psychologists developing such a diagnosis for possible inclusion in the 2011 iteration of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5, published by the American Psychiatric Association. As it stands now, these children are often misdiagnosed and incorrectly treated, working group members argue. The team is an interest group of the National Child Traumatic Stress Network, a consortium of 70 child mental health centers founded and funded by the Substance Abuse and Mental Health Services Administration that brings together clinicians who work with children who have complex trauma histories.
To fill the gap, the group is proposing a diagnosis called "developmental trauma disorder" or DTD, to capture what members see as central realities of life for these children: exposure to multiple, chronic traumas, usually of an interpersonal nature; a unique set of symptoms that differs from those of post-traumatic stress disorder (PTSD) and a variety of other labels often applied to such children (see "Current trauma diagnoses"); and the fact that these traumas affect children differently depending on their stage of development.
"While PTSD is a good definition for acute trauma in adults, it doesn't apply well to children, who are often traumatized in the context of relationships," says Boston University Medical Center psychiatrist Bessel van der Kolk, MD, one of the group's co-leaders. "Because children's brains are still developing, trauma has a much more pervasive and long-range influence on their self-concept, on their sense of the world and on their ability to regulate themselves."
The 10-member group has been meeting since 2005, gathering relevant research, hashing out possible criteria and devising a strategy for getting the diagnosis to a rigorous enough place to be considered. They admit they have much work ahead before that happens, given the labor involved in gathering case materials, developing instruments and testing those instruments in the field for validation.
But they are committed to the task because they believe state mental health systems currently flounder on treatment plans for these children because they lack an accurate framework for understanding their problems.
"We think DTD has a strong scientific basis to it," says University of California Los Angeles child expert Robert Pynoos, MD, co-director of the trauma network and co-leader of the working group. "But it also has a common-sense resonance with community mental health workers and with families who are looking for a proper understanding of their troubled child or teenager. If we could introduce a rigorous diagnosis like this, it could have a significant impact on thousands of children."
Building a case
To make its case that science supports the DTD diagnosis, the group is examining large databases of children who can help inform the potential diagnosis. For example, members of the child trauma network, which sees up to 50,000 children per year, are building a core data set where they're finding out not only what kind of traumas children have experienced, but when they occurred and for how long. The group also is tracking a 20-year longitudinal study of 4,000 Australian child survivors of natural disasters that includes life-history questions. The team will look at differences between children who report interpersonal traumas and those who don't, van der Kolk notes.
In addition, the team is drawing from the attachment, developmental and interpersonal trauma literature, says University of Connecticut psychologist Julian Ford, PhD, a group member and an affiliate of APA Divs. 12 (Clinical) and 56 (Trauma). Ford outlines some of this research in a paper in the May 2005 Psychiatric Annals (Vol. 35, No. 5, pages 410-419).
The team is considering two research streams, Ford says. One finds that children who experience interpersonal trauma show a disrupted ability to regulate their emotions, behavior and attention. For instance, studies show that when caregiving in animals is disrupted or withdrawn, they become anxious and highly reactive to stressors, and when they are older, are less likely to explore their environments, Ford notes.
The other research area shows that much of children's later ability to think clearly and solve problems in a calm, non-impulsive way stems from their experiences in the first five to seven years of life. A case in point is an ongoing retrospective study of 17,337 adult managed-care users funded by Kaiser Permanente and the Centers for Disease Control and Prevention, cited by van der Kolk in the May 2005 Psychiatric Annals (pages 401-408). It found a highly significant relationship between reported traumatic childhood experiences such as sexual and physical abuse, and later episodes of depression, suicide attempts, alcoholism, drug abuse, sexual promiscuity and domestic violence. It also discovered that the more adverse childhood experiences a person reports, the more likely he or she is to develop life-threatening illnesses such as heart disease, cancer and stroke.
In addition, the team is including the latest findings on the neurobiological consequences of traumatic interpersonal stress. For instance, studies show that women abused as children who recall memories of abuse or are confronted with stressful cognitive challenges have strong reactions in brain areas that signal threat, but reduced mobilization of brain areas related to focusing attention and categorizing information, Ford's paper notes.
Finally, the group is piecing together information on how complex interpersonal trauma can differentially impact each stage of development, says Pynoos. It also is incorporating the fact that effects of early trauma can spill over into other stages, even if those traumas have stopped occurring, he notes.
Finding the right treatment
Group members are investigating existing child trauma treatments. They're also gathering information on new interventions geared specifically to working with these youngsters.
One type of promising treatment teaches children self-regulation skills-in essence, helping them see how they have adapted in the face of trauma. The treatment helps them modify those adaptations in creative ways so they can shift out of survival mode and into one more appropriate to their developmental stage, according to Ford. Similar therapies focusing on self-regulation help children to achieve developmental competencies that they were unable to acquire initially, says Pynoos.
Involving parents or caregivers is critical too, emphasizes University of California San Francisco psychologist and group member Alicia Lieberman, PhD. Parents who maltreat their children often are dysregulated themselves, a phenomenon known as "intergenerational transmission of trauma," she notes.
In the intervention-Parent-Child Psychotherapy, which she created and which is supported by research-"we help the mother or father become attuned to their own dysregulation," she says, "and that helps them become more responsive to the child's dysregulation." As one example, Lieberman's team recently saw an abused mother and her toddler in treatment. At one point the child fell and hit his head, and lifted his arms to the woman for help. She responded, '"Don't you hit me!"' Lieberman recalls. The team's job was to help the woman understand where her reaction was coming from, and to learn more appropriate ways of responding to and caring for her child, Lieberman explains.
Experts' view of DTD
The group is tackling an important and overlooked phenomenon, other child experts concur.
"The idea of isolating reliable and valid diagnostic criteria to identify this group of children is one whose time has come," says University of California Los Angeles child expert Karen Saywitz, PhD, who chairs an APA interdivisional Task Force on Child and Adolescent Mental Health. "The group's ideas are well-grounded in recent advances in research on parent-child attachment, neurobiological developments, information processing and treatment outcomes."
APA Div. 56 (Trauma) President Judie Alpert, PhD, a psychologist at New York University, agrees that the group correctly identifies the connection between certain children's symptoms and interpersonal trauma. "Without this clarity, we have only limited understanding of these children's difficulties and a disjointed approach to treatment," she notes.
The proposed diagnosis highlights the importance of bringing relationship factors more fully into the DSM, adds Emory University psychologist Nadine Kaslow, PhD, who discusses this need in an article in the September 2006 Journal of Family Psychology (Vol. 20, No. 3, pages 359-368) along with lead author Steven Beach, PhD, and colleagues.
"Often we develop psychological difficulties in the face of interpersonal challenges," says Kaslow, chief psychologist at Grady Memorial Hospital in Atlanta and winner of a 2006 APA Presidential Citation for her work reaching out to psychology trainees, postdoctoral fellows and training sites after Hurricane Katrina. "It is very appealing to see people thinking not just individually, but contextually and systemically."
But the experts also caution that it's vital the group be sure its research is airtight so they are sure they are identifying the right youngsters, and so such a potential diagnosis is not mis- or overused.
"People vary dramatically in their resilience to adversity," says Saywitz, "so it is important the group is vigilant in its efforts to prevent misuse of a new diagnostic category and the untested treatments that may well arise."
The group's accurate fingering of a widespread problem likewise underscores the need for better trauma training in graduate school, Alpert says. "When trauma is discussed in courses that focus on diagnosis and the DSM," she says, "trauma often receives short shrift."
Despite these caveats-and no matter what happens with the diagnosis in the short term-the group does a major service by bringing these youngsters and their needs to the attention of the public, funders and policy makers, Saywitz believes.
"If the debate over DTD is a catalyst for such a discussion," she notes, "it will benefit not only these children and families, but our society as a whole."
Tori DeAngelis is a writer in Syracuse, N.Y.