From the day she brought her son Jack home from the hospital, Kim Leserman knew something wasn't quite right.
Leserman and her family live a quarter-mile from the Pacific Ocean in Manhattan Beach, Calif., but Jack wouldn't touch sand. In preschool, the sight of finger paints made him gag. At night, he awoke whenever the furnace kicked on.
Jack, who's now 9 and an A student, is much improved, his mother says, thanks to thousands of dollars' worth of occupational therapy paid for entirely out-of-pocket. The family's health insurance plan wouldn't cover any of it because Jack's diagnosis, sensory processing disorder, isn't in the American Psychiatric Association's diagnostic manual, better known as the DSM.
After a decade spent reviewing the scientific literature and consulting scores of international experts, the psychiatric association last month posted the first draft of the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, or DSM-5. The public can read the draft at dsm5.org and submit comments until April 20. The final version is due in May 2013.
"The door is not closed yet," says David Kupfer, the University of Pittsburgh psychiatrist who chairs the DSM-5 task force. So far, he says, the group has received 3,300 comments, more than three-fourths of which address specific conditions.
Preventing 'diagnostic chaos'
Families of children diagnosed with sensory processing disorder and therapists who treat them were excited to see a mention of the condition, although not in the main body of the DSM-5 but on a list of "conditions proposed by outside sources." Says Leserman: "I was really happy to hear they're finally taking this seriously."
Inclusion in the DSM carries weight beyond the psychiatrist's office. It influences whether insurers will cover therapy for a condition, whether scientists will pursue research into its causes and treatments and whether the Food and Drug Administration will approve medications that can be marketed for it.
Premenstrual dysphoric disorder, or PMDD, a severe form of premenstrual syndrome, made it into the appendix of DSM-IV, published in 1994, spurring drugmaker Eli Lilly to test fluoxetine -- better known as Prozac -- as a treatment. Lilly gave fluoxetine a girlish name, Sarafem, and new colors, pink and lavender, and, with the FDA's approval, began marketing the pills for PMDD in 2000.
Besides sensory processing disorder, the 11 other conditions on the DSM-5 list of those proposed by outside sources include melancholia, which some psychiatrists argue is a subtype of depression, and parental alienation disorder, in which, advocates say, one parent brainwashes a child into thinking the other parent is the enemy. As the DSM-5 notes, the conditions "are considered 'under review,' " and work groups will decide whether to include them "after further assessing the evidence."
The task force considers a range of factors in "validating" a condition for inclusion in the DSM, such as whether it seems to run in families or responds to a particular treatment, says Darrel Regier, Kupfer's co-chairman. A key question, according to the DSM-5 website, is whether a condition "is sufficiently distinct from other diagnoses to warrant being considered a separate diagnosis."
"No matter what we do," Kupfer says, "there are going to be constituencies out there that are going to say the process is not the way they like it."
As Mary Wylie, a senior editor of the Psychotherapy Networker, writes in the March issue, "DSM is the book that everybody loves to hate and hates to love but can hardly do without." Wylie calls it "the one organizing principle standing between the mental health field and sheer diagnostic chaos."
Developmental trauma disorder is on the list with sensory processing disorder. It affects people whose caregivers abused them as children, says Bessel van der Kolk, a Boston University psychiatrist who directs the Complex Trauma Treatment Network.
The problem, Regier says, is that the condition's all-encompassing symptoms make it difficult to distinguish from a half-dozen other disorders. But van der Kolk, who worked on DSM-III and DSM-IV, credits a backlash against blaming parents for children's mental problems for the reluctance to include the disorder in the DSM. He calls the manual "a political document" that often leads to inappropriate diagnoses and treatment.
Distinguishing some conditions
As for melancholia, the DSM-5 task force isn't yet convinced it's distinct from major depression, Regier says.
But Max Fink, professor emeritus of psychiatry at New York's Stony Brook University and co-author of Melancholia: A Clinician's Guide, says scientists have identified several characteristics that distinguish the condition, such as high levels of the hormone cortisol. Patients respond only to electroconvulsive therapy or tricyclic antidepressants, not the newer SSRI -- serotonin reuptake inhibitor -- antidepressants, Fink says.
The DSM-5 task force has similar concerns about sensory processing disorder, in which children either overreact or underreact to sensory stimuli, "a very common symptom of autism," Regier says.
But Lucy Miller, director of the Sensory Processing Disorder Foundation near Denver, argues that most children with sensory problems do not have autism.
Leserman, whose younger son also was diagnosed with the condition, says she knew Jack wasn't autistic. "He was talking up a storm. He was loving. He had friends. He just couldn't stand the world."
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