A Tense Compromise on Defining Disorders
They plotted a revolution, fell to debating among themselves, and in the end overturned very little except their own expectations.
But the effort itself was a valuable guide for anyone who has received a psychiatric diagnosis, or anyone who might get one.
This month, the American Psychiatric Association announced that its board of trustees had approved the fifth edition of the association’s influential diagnostic manual — the so-called bible of mental disorders — ending more than five years of sometimes acrimonious, and often very public, controversy.
The committee of doctors appointed by the psychiatric association had attempted to execute a paradigm shift, changing how mental disorders are conceived and posting its proposals online for the public to comment. And comment it did: Patient advocacy groups sounded off, objecting to proposed changes in the definitions of depression and Asperger syndrome, among other diagnoses. Outside academic researchers did, too. A few committee members quit in protest.
The final text, which won’t be fully available until publication this spring, has already gotten predictably mixed reviews. “Given the challenges in a field where objective lines are hard to draw, they did a solid job,” said Dr. Michael First, a psychiatrist at Columbia who edited a previous version of the manual and was a consultant on this one.
Others disagreed. “This is the saddest moment in my 45-year career of practicing, studying and teaching psychiatry,” wrote Dr. Allen Frances, the chairman of a previous committee who has been one of the most vocal critics, in a blog post about the new manual, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM5.
Yet many experts inside and outside the process said the final document was not radically different from the previous version, and its lessons more mundane than the rhetoric implied. The status quo is hard to budge, for one. And when changes do happen, they are not necessarily the ones that were intended.
The new manual does extend the reach of psychiatry in some areas, as many critics feared it might. Hoarding is now a mental disorder (previously it was considered a symptom of obsessive-compulsive behavior). “Premenstrual dysphoric disorder,” a severe form of premenstrual syndrome, is also new (it was previously in the appendix).
And binge-eating disorder (also formerly in the appendix), a kind of severe, highly distressing gluttony, is now a full-blown diagnosis. This one by itself could tag millions of people considered healthy, if often overindulgent, with a psychiatric label, some experts said.
But the deeper story is one of compromise. It is most evident in how the committee handled three of the thorniest diagnoses in psychiatry: autism, depression and pediatric bipolar disorder.
The group working on depression declared early on that it wanted to eliminate the so-called bereavement exclusion, which stated that grieving the loss of a loved one should not be considered a clinical disorder, though it shares many of the same outward signs. Grief has always been a normal reaction to death, not a kind of depression.
Advocacy and support groups, such as those representing people who have lost a child, objected furiously to the idea that the bereaved might be given a diagnosis of depression.
“This was just astonishing, that they would eliminate the exclusion, and a distortion of the research on the subject,” said Jerome Wakefield, a professor of social work and psychiatry at New York University, who did not work on the manual.
In the end the committee cut a deal. It eliminated the grief exclusion but added a note in the text, reminding doctors that any significant loss — of a job, a relationship, a home — could cause depressive symptoms and should be carefully investigated.
“It’s like they took it all back,” Dr. Wakefield said. “I don’t like the way it was done — in a footnote — but it’s there.”
The debate over autism was even more furious, and it resulted in a similar rapprochement.
From the outset, the committee intended to tighten the definition of autism and simplify it, eliminating related labels like Asperger syndrome and “pervasive developmental disorder not otherwise specified,” or PDD-NOS. The rate of diagnosis of such conditions has exploded over the past decade, in part due to the vagueness of the definitions, and the committee wanted to draw clearer boundaries.
It proposed a single “autism spectrum disorder” category, with stricter requirements.
Some outside researchers raised concerns. In January one of them, Dr. Fred Volkmar of the Yale School of Medicine, who had quit the committee in protest, presented research suggesting that 45 percent or more of people who currently had an autism or related diagnosis would not have one under the proposed revision.
Autism groups reacted immediately, fearing that the change in the diagnosis would deny services to children and families who need them.
The committee countered with its own study, suggesting that the new definition would exclude about 10 percent of people currently with a diagnosis. And again, the experts took a half step back.
The new, streamlined definition was approved, but with language that took into account a person’s diagnostic history. “It’s explicit that anyone who’s had an Asperger’s or autism or PDD-NOS diagnosis before is now included,” said Catherine Lord, a committee member who worked on the new definition and who is director of the Center for Autism and the Developing Brain in New York. “Essentially everyone gets in.”
Pediatric bipolar disorder posed a different challenge.
In the 1990s and 2000s, psychiatrists began giving aggressive, explosive children a diagnosis of bipolar disorder in increasing numbers. The trend appalled many patient advocates and doctors.
Bipolar disorder, which is characterized by episodes of depression and mania, had previously been an adult problem; now the diagnosis is given to children as young as 2 — along with powerful psychiatric drugs and tranquilizers that also cause rapid weight gain. The committee wanted to stop the trend in its tracks, said experts who were involved.
Most of the children treated for bipolar disorder did not have it, recent research found. The committee settled on an alternative label: “disruptive mood dysregulation disorder,” or D.M.D.D., which describes extreme hostility and outbursts beyond normal tantrums.
“They essentially wanted to have some place for these kids, and D.M.D.D. was all they had in their kit,” said Dr. Gabrielle Carlson, a child psychiatrist at Stony Brook University Medical Center, who provided some outside consultation. “These are mostly kids who have A.D.H.D. or what we would call oppositional defiant disorder, but with this explosive feature. They need help; you can’t wait forever. The question was what to call it, without pretending we know enough to saddle them with a lifelong diagnosis” like bipolar disorder.
D.M.D.D. has its own problems, as many experts were quick to point out. It could be a symptom of an underlying condition, as Dr. Carlson argues. It could “medicalize” frequent temper tantrums. It’s brand new, and no one knows how it will play out in practice.
But it is now in the book — because it was the best solution available, experts inside and outside of the revision process said.
From beginning to end, many experts said, the process of defining psychiatric diagnoses is very much like finding the right one for an individual: it’s a process of negotiation, in many cases.
“That’s one of the take-aways from all this, and I think it’s a good one,” Dr. Carlson said. “A diagnosis is a hypothesis. It’s a start, and you have to start somewhere. But that’s all it is.”
One of the committee’s most ambitious proposals was perhaps the least noticed: a commitment to update the book continually, when there’s good reason to, rather than once every decade or so in a giant heave. That was approved without much fanfare.