This is the first major revision of the DSM in nearly 20 years. No one has seen it.
Not the complete, final, tangible version, at least. Interested psychiatrists have seen most of it, during the manual’s multiple open comment periods. For months — years — onlookers have dissected it with sharpened scalpels: Which diagnoses have been removed (Asperger syndrome). Which diagnoses have been added or reconfigured (hoarding). Whether the ones included are too broad, or too tied to the pharmaceutical industry, or maybe just too numerous.
Even before one can buy the DSM-5, one can buy books lambasting the DSM-5. Books with titles like “The Book of Woe.” Or “The Intelligent Clinician’s Guide to the DSM-5.” Or “Saving Normal,” which was written by an unexpected figure: the man who was the chair of the DSM-IV task force, the DSM-5’s predecessor, back in the 1990s.
There is a reason for the intense focus: Over the course of its 60-year history, the DSM has come to represent a diagnosis encyclopedia, a mental bible. It is made specifically for the psychiatric community, but an armchair hypochondriac may purchase it on Amazon.com for $135. (Hypochondriasis: a term that will not appear as usual in the DSM-5. Instead it will be combined with other disorders under the umbrella term “complex somatic symptom disorder.”)
It is the dictionary of our pain.
When we look at the DSM-5, what we’re looking at is 60 years of humanity’s attempt to understand what we will never give up trying to understand: ourselves. The last frontier of exploration in this vast, ever-expanding universe all takes place between our ears, and it’s all corralled into the pages of this manual.
A long road to revision
The American Psychiatric Association is headquartered in Arlington, on the 20th floor of a high-rise three blocks from the Rosslyn Metro. Most of the APA’s interior is bland — cubicles measured off like inches on a ruler — but the window offices have sprawling views of the Potomac River.
One such window office belongs to James Scully, the chief executive officer and medical director of the APA. This afternoon, a baking April weekday, he sits in it with Darrel Regier, the co-chair of the task force charged with the DSM-5 revision (the chair, who is not here today, is David Kupfer).
Scully has white hair and blue eyes and a soft voice that occasionally twinkles; you can picture him somewhere on a canoe or in front of a fireplace. Regier is dark-haired, thorough — a man who gives precise, date-packed answers, swaddled in history and context.
The APA “held 13 conferences from 2003 to 2008 covering all of the major diagnostic areas,” Regier says, talking about the decade-long endeavor to develop the new manual.
It was a long process, Scully explains.
“It took one year to vet the task force,” Regier elaborates. The task force was ready in 2007, “but then it took another year, to 2008, to appoint 130 members of 13 work groups.”
When the DSM-IV was released back in 1994, researchers didn’t know nearly as much as they know now about how the brain works. They didn’t know as much about circuitry, or about genetics. Under the DSM-IV, Scully says, too many patients were handed a diagnosis of “not otherwise specified,” a vague term meaning that doctors didn’t have a disorder to fit the symptoms at hand.
The task force hopes that will not be a problem with the DSM-5. “Altogether, we have about 157 specific mental disorders,” Regier says of this manual. “That represents a total of 15 new, and we deleted two.” In addition, the task force took 50 existing diagnoses and collapsed them into 22. Total, there are actually fewer diagnoses than there were in the DSM-IV, he says. “But there is an enormous amount of movement.”
For example: Binge eating now gets its own category under the general grouping of eating disorders.
For example: The diagnosis of ADHD has been expanded to account for the way that adults express symptoms differently from children.
The goal of the new manual, Scully says, “is to increase the accuracy in diagnoses so that we can do better care. Taking care of patients. Helping people get better.”
Of course, that has always been the goal, for any good doctor, in any branch of medicine. The trouble is that precisely what “helping people” means has changed radically over time — madhouses to electroconvulsive therapy to psychoanalysis to Prozac.
To truly understand the meaning of the DSM-5 — why it’s being revised, how it got here, what it means — “I think,” Regier says, “it really goes back to the 1950s.”
Before that, even. The first published attempt at cataloguing mental health in the United States appeared in 1917. The Statistical Manual for the Use of Institutions for the Insane was a slim 40-page treatise, dispersed to mental hospitals trying to describe their clientele. It included 22 varieties of “mental disease,” 15 of which were types of psychosis.
Decades passed. The return of soldiers from World War II — and the psychological issues they brought with them — caused the medical community to think more intently about categorizing those issues. In 1952, the American Psychiatric Association decided to create a new book. It would be dedicated solely to diagnosing mental illness. It would be called the “Diagnostic And Statistical Manual: Mental Disorders.” The DSM.
Not exactly a best-selling title, but then, it wasn’t meant to be a best-selling book. Outside of the mental health community in the United States, “Nobody much paid attention to it,” says Edward Shorter, a medical historian at the University of Toronto, and the author of “How Everyone Became Depressed: The Rise and Fall of the Nervous Breakdown.” There was already an international document, the International Classification of Diseases, that was in use worldwide.
Besides, in the early 1950s, psychiatry was still dominated by psychoanalysis, by the ghost of Sigmund Freud, who had died in 1939. “Nobody was interested in the classification of illness,” Shorter says. People were interested in dream analysis. In the mysterious vagaries of the subconscious, in the interplay between the id, the ego and the superego. The predominant diagnoses at the time were anxiety and “neurotic depression,” illnesses which lent themselves especially to the faddish dream interpretation of the period.
Ironically, the same year that the first DSM was released, in all of its psychoanalytical glory, the drug chlorpromazine became available in France. The first edition of the DSM was a new book representing old concepts — the “last gasp” of psychoanalysis, Shorter says. Chlorpromazine, sold as Thorazine in the United States and the first drug specifically market as an anti-psychotic, represented the dawn of psychopharmacology, the beginning of a new era.
A mirror of the times
Something was wrong with the water in London. Or if not the water, then the architecture. Or if not the architecture, then the traffic patterns. Or maybe the problem was the diagnostic tools.
What happened: In 1972, a team of British and American researchers published a study called “Psychiatric Diagnosis in New York and London” that compared diagnoses from hospitals on each side of the Atlantic.
The study’s results were confusing: 62 percent of New York’s patients were diagnosed as schizophrenics, compared with only 34 percent of London’s test subjects. London doctors, on the other hand, declared 24 percent of their subjects to be suffering from depressive psychosis — a diagnoses given to only 5 percent of New York’s study participants.
The study illustrated a problem with diagnosis at the time: It wasn’t consistent, and it wasn’t repeatable. Psychiatrists were ostensibly using the same definitions but were arriving at different conclusions.
The second revision of the DSM had been more of an update than an overhaul, but in the mid-1970s, the DSM task force decided that the third edition would be a rigorous and ambitious reimagining of what a psychiatric manual could do. Columbia psychiatrist Robert Spitzer was tapped to act as chair, and he set about changing the DSM from a more descriptive document to a rule-bound field guide for classification.
Gone were the Freudian “neuroses” that had populated earlier editions. Introduced were guidelines to help clinicians from different facilities arrive at the same conclusions, writes Bob Whitaker in “Anatomy of an Epidemic,” a history of mental health in the United States. A practitioner could not, for example, declare someone to be experiencing a “major depressive episode” unless five of nine listed criteria were met.
Moreover, the DSM-III was a rhetorical revolution, expanding the number of potential diagnoses — and the terms people had available to describe their suffering — to 265. It neatly organized people and behaviors into tidy compartments, laying the groundwork for manuals to come, and for the future of psychiatry as a whole. One psychiatrist at the time, writes Whitaker, heralded the new DSM as the victory of scientific psychiatry: “The old psychiatry derives from theory, the new psychiatry from fact.”
And this is what we, the patients, really want: Facts. Diagnoses. Pills, treatments, cures, therapy, anything to ease our psychic pain, to make us feel better.
Consider Sybil, the troubled young artist whose name became synonymous with multiple personality disorder (now known as dissociative identity disorder). Consider legions of vaguely socially uncomfortable men — everyone from Mark Zuckerberg to Mitt Romney — offhandedly referred to as “Asperger-ish.” Consider A&E, network of a hundred maladies, hosting a parade of cat ladies and newspaper stackers on the show “Hoarders.”
To laymen, psychiatry can still come across as theoretical, more difficult to grasp than other branches of medicine: The difference between a bloody foot and a bruised soul. But over the course of its history, the DSM has been a mirror, reflecting whatever is ailing society and providing a vocabulary with which to discuss it. The language of the DSM has been embraced (misused?) by the masses, aiding in the self-description, self-labeling and self-analysis that have defined the 2000s and 2010s. We are “a little bit OCD,” with bosses who are “classic narcissists.” We are dating boyfriends who might have generalized anxiety disorder.
The DSM takes that bruised soul and gives it a name. Which gives us peace of mind.
If something is wrong with all of us, is anything wrong with any of us?
Concerns and doubts
“I am a lazy, selfish person who has never been involved in a cause before this, but I felt like I had no choice.”
This is Allen Frances, the chair of the DSM-IV task force. The “cause” he speaks of is speaking out against the DSM-5. A few decades ago, his wife had a brain tumor, and he dropped out of practice for a while. When he became involved in the field again, he decided that the field had drifted toward over-diagnosis and over-medication.
Now he has been traveling around the world, spreading this gospel, which is also laid out in two separate books he has written on the DSM-5, and on what he sees as diagnosis inflation and migration.
Frances is one of multiple vocal critics who have expressed doubts about, reservations over, or downright hatred toward the new manual.
Last week, the National Institute of Mental Health, the largest mental health research organization in the world, announced that it had concerns about the DSM-5 and would begin reorienting its research away from DSM categories. “The weakness is a lack of validity,” NIMH director Thomas Insel wrote in a statement, criticizing the DSM-5 for basing its diagnosis on clinical symptoms rather than on “objective laboratory measures.” “Patients with mental disorders,” Insel wrote, “deserve better.”
David Kupfer, the DSM-5’s chair, responded to the NIMH’s concerns by arguing that objective measures, like biological and genetic markers, are still too far off to wait for. “In the absence of such major discoveries,” he wrote in a statement, “it is clinical experience and evidence, as well as growing empirical research, that have advanced our understanding” of many disorders.
Understanding has been advanced — but not reached.
Because even for medical professionals, “fact” is a moving target, a difficult destination. Throughout its history, the DSM has remained a consensus document, says Shorter, the medical historian. “We didn’t [calculate] the speed of light in a consensus document . . . Psychiatry aspires to scientific status,” Shorter says, but it’s also subject to the political or interdisciplinary nuances of the day.
“People don’t change quickly,” says Frances. “Labels change on a dime. Labels follow fashion. Whenever there’s a sudden jump, it’s not because there’s more pathology, it’s because there’s a difference in labeling it.”
It brings up an essential, philosophical question: Who are we? Are we the same people we’ve always been? Sicker? Healthier? Wounded as ever, but with better terminology?
The DSM might relabel our suffering, but does it bring us any closer to understanding the unquiet of our minds?
“We’re very comfortable with what we’ve done,” says James Scully, the APA chief executive, back in his office overlooking the Potomac. “And moving forward, we think it’s a wonderful book, and people get to see it in a few weeks.”
Not that he expects that this is psychiatry’s final destination.
“Will there be changes in the future? I hope so. It’s not the word of God. It’s the best science we have currently,” he says. “This is DSM-5, it’s not DSM-The End.”