Rewriting the Dictionary of Madness : Is the Diagnostic and Statistical Manual of Mental Disorders a Work of Pure Science or Just a List of Dangerous Labels

Ann Japenga is a contributing editor for Health magazine. Her last story for this magazine was "Grunge R Us," a lament for the disappearing counterculture

Patients walk into Peter Breggin's office and lay their diagnoses on the couch: They're depressed. They're anxious. They're sure they have a measurable, palpable illness, with shape, substance, gravity, consistency.

"A little boy came in with his parents and I asked him: 'Do you know why you're here?' " Breggin says.

" 'Yes. I'm here because you're the doctor who doesn't believe I should take Ritalin for my ADHD (attention deficit-hyperactivity disorder).' "

"Well, you've got it close," Breggin answered. "I'm the doctor who doesn't think you've even got ADHD."

It isn't surprising the boy was already identifying himself by his mental disorder. Psych-speak pervades our culture. Folks bandy about psychiatric labels in espresso bars and in school lunchrooms, at supermarkets and on talk shows; we diagnose ourselves and we tag each other: I'm manic; you're a little obsessive-compulsive. Some of these we pluck from the magazines, others from self-help books. Because the labels are so often intoned, they've come to seem as substantive as a diagnosis of pneumonia or diabetes.

"The public believes these things are real," says Breggin, director of the nonprofit Center for the Study of Psychiatry in Bethesda, Md., and author of the soon-to-be-released "Talking Back to Prozac." "They come into my office thinking they have 'it.' People scream at me: 'I have clinical depression!' "

Though everyone seems to believe that mental illnesses have a biochemical basis, Breggin points out that no one has ever been able to prove that mental illnesses--such as depression, panic disorder and even schizophrenia--are biological conditions. All the psychiatric community knows is that some patients respond to drugs; some mainstream psychiatrists acknowledge that they are treating symptoms rather than a quantifiable illness.

"How do you convince (patients) that a bunch of guys just made this stuff up?" aks Breggin exasperatedly. "They made it up." The renegade psychiatrist did at least manage to convince his young patient that he didn't have an immutable, classifiable "it." Says Breggin: "That boy left here singing for the first time in months."

WHEN PETER BREGGIN TELLS PATIENTS THEIR ILLNESSES ARE JUST CONCEPTS some guys made up, he's referring to the process by which psychiatric disorders are identified and classified, an involved, complicated procedure that began anew several years ago. The American Psychiatric Assn. gathered hundreds of psychiatrists from around the country to hash out which disorders belong in the latest version of the Diagnostic and Statistical Manual of Mental Disorders, or the DSM. (The DSM-IV was scheduled to be unveiled two weeks ago at the national APA conference.)

Often referred to as the bible of psychiatric diagnosis, the DSM defines mental illness and shapes notions about normalcy and deviance in the United States and around the world. (The previous version, the DSM-III-R, which came out in 1987 and revised DSM-III, was translated into 17 languages.) Psychiatrists and other physicians, nurses, social workers, psychologists, school counselors, insurance companies and courts all turn to the manual to give form and a sense of scientific absolutism to the wraithlike feelings that assail men and women.

For years, many have considered psychiatry the squishy, harebrained stepchild to real medicine. The public has heard endless squabbling over the nature of mental illness. (In fact, within the profession, there are those, like Breggin, who believe that so-called mental illnesses are responses to real-life situations, and are not biochemically or genetically based, as others believe.) The DSM system was created, in part, to clarify and improve psychiatry's image by giving mental-health professionals something more substantial to point to than Freudian-based psychoanalytic theory. Freudians generally don't take to the DSM, but the Freudian era is on the wane and now the keyword is science. The profession dearly wants to be regarded as scientific, and, with each new edition, it claims a victory for that cause. "More than any other nomenclature of mental disorders," the introduction to the new volume says, "DSM-IV is grounded in empirical evidence."

The volume certainly looks scientific. It's an imposing maze, divided into axes, major diagnostic classes and individual disorders. There are no treatment recommendations--the manual is purely diagnostic. Each disorder comes with several paragraphs of description, along with information about how prevalent it is and the expected course of behavior for those afflicted. The core of each diagnosis, though, is a checklist of symptoms, the psychiatric equivalent of a blood test. If a patient meets, say, five of nine criteria under the description of Borderline Personality Disorder, then the patient will likely be assigned the label.

As psychiatrists identify more and more disorders, the codes have proliferated. A hundred years ago, there were only seven labels applied to the emotionally disturbed: mania, melancholia, monomania, paresis, dementia, dipsomania and epilepsy. The first DSM, released in 1952, listed 197 diagnostic categories. Today, DSM-IV describes nearly 300 disorders.

"I use the DSM-III-R probably every day," says Marc Graff, assistant chief of psychiatry for Kaiser Permanente in the east San Fernando Valley. "I keep a copy at work, one at home and I carry one on call. It helps me conceptualize what's going on with a patient."

But others, both inside and outside the profession, consider the system of categorizing disorders arbitrary at best and dangerous at worse. "It's not really an objective document at all," argues University of Montreal sociology professor David Cohen, who specializes in mental-health trends. "There's really nothing scientific about it. It's really just a list of our sins and deviations; it's a repository of our fears and our dislikes and hatreds."

Arbitrary or not, this list has become a money-making industry. DSM-II, a 134-page spiral-bound notebook, sold for $3.50 in 1968. DSM-IV, the fattest and most expensive manual yet, contains more than 880 pages between its burgundy covers and sells for $54.95 hardcover. In addition, the American Psychiatric Press, a subsidiary of the American Psychiatric Assn., churns out pocket guides, desk guides, quick reference guides, casebooks and all manner of DSM support material. Last year, the DSM-III-R, of which 650,000 copies have been sold, and sideline publications grossed $22 million.

Such growth has not come quietly. The history of the manual has been punctuated by some noisy, public battles. In the early '70s, gays protested the inclusion of homosexuality as a mental disorder. Also in the '70s, Vietnam veterans lobbied to have Post-Traumatic Stress Disorder included. After considerable agitation and research, homosexuality was removed and Post-Traumatic Stress Disorder added.

Most recently, two proposed categories affecting women have caused rumbles. Women's groups argued that including Premenstrual Dysphoric Disorder (in essence, PMS) in the manual would unfairly pigeonhole roughly 500,000 Americans. Nevertheless, it made the DSM-IV list of disorders requiring further study. Women also protested the inclusion of Self-Defeating Personality Disorder. This label, included in DSM-III-R, has been applied to patients--usually women--who made destructive life choices or stayed in abusive or unsatisfactory relationships. After much debate, it was eliminated from DSM-IV.

Feminists fought the labels because they are well aware of how powerful a label can be. "The DSM has enormous influence over many aspects of American life," says Herb Kutchins, professor of social work at Cal State Sacramento and co-author of "The Selling of DSM: The Rhetoric of Science in Psychiatry." Each year, more than 20% of Americans suffer from a mental illness, according to the National Institute of Mental Health. This segment of the population that is labeled can experience stigmatization, loss of employment, rejection for health insurance, involuntary commitment, forced drugging or electroshock, or loss of a child in custody cases.

Margaret Jensvold, a respected researcher for the mental-health institute, says that receiving a label was part of a series of events that derailed her life and ended her promising career as a scientist. "In general, I'm not against psychiatric diagnosis. I'm against the misuse of psychiatric diagnosis, and every diagnosis has the potential to be misused. Some have so much potential for misuse they should not be included in DSM."

Other critics would drop the whole diagnostic system, saying it resembles an earlier catalogue of fears and superstitions. Says Kutchins: "I think the DSM should be put up on the shelf next to another oppressive historical oddity--the Malleus Maleficarum--the 15th-Century diagnostic guide to witches."

IF THE MANUAL SCIENTIFICALLY ADVANCES THE PROFESSION OR DRAGS IT further into controversy, the man most responsible is Allen Frances, the 51-year-old chairman of the department of psychiatry at Duke University. Frances was selected by the American Psychiatric Assn. to oversee DSM-IV because of his "distinguished record of involvement in DSM-III and DSM-III-R," says Harold Pincus, deputy medical director for the APA and vice-chairman of the DSM-IV task force. "And he had done significant research on psychiatric diagnoses and classification."

Yet Frances did not always believe mental distress could be neatly categorized. As a young psychoanalyst in training at Columbia University in the '70s, Frances looked askance at early efforts to scientifically classify mental illness. "I thought they were missing the point and poetry of the interactive relationship with the patient," he says. "But I came to realize, partly from clinical experience and partly from reading--partly from growing up--that the field did need to have a standard language. It is all well and good to have a poetry of interpersonal relationship, but we also needed (the DSM) for good medical practice."

Frances sought to avoid the controversies that divided previous DSM committees by placing less emphasis on input from the public and special interest groups. "We discouraged position papers gathered to support one or another point of view," he says. "The idea was to be as comprehensive, systematic and as fair as possible in the interpretation of the findings."

The massive, complicated enterprise lasted four years and involved more than 1,000 committee members and advisers. Thirteen groups--handpicked by Frances and organized by genres such as personality disorders, psychotic disorders and anxiety disorders--generally met twice a year and held conference calls as often as once a week. Their mission: to fine-tune disorders listed in the DSM-III-R and to evaluate the studies that would support new categories.

The 27-member task force that oversaw the committees received more than 100 proposals but added only 13 new disorders. Frances worked to reduce the number of new categories, he says, because earlier editions listed new disorders only to stimulate research.

Though he tried to keep controversy to a minimum, clashes did occur over Self-Defeating Personality Disorder and Premenstrual Dysphoric Disorder. Frances calls them "tempests in a thimble" and laments that the media have overplayed the controversy by choosing to focus on these disorders. But Paula Caplan, professor of psychology at the University of Toronto and author of "The Myth of Women's Masochism," feels that the attention was justified. She was one of a number of feminist scholars and psychologists who testified that the label would be particularly ruinous in cases involving abuse or harassment, where it could be argued that a woman brought the trouble on because of her self-defeating personality.

The committee's deliberations over the diagnosis were riddled with "pseudoscience and sloppy science," says Caplan, who gives her view of the issue in a forthcoming book: "How DO They Decide Who Is Normal?" When Caplan appeared to testify at a 1985 hearing for DSM-III-R on the self-defeating classification (one of the rare occasions on which a DSM task force invited outside input), she figured the committee had solid rationale for wanting it in the manual.

"I walked into this boardroom at APA headquarters (in Washington, D.C.) and here were all these great, famous psychiatrists whose work I had read," says Caplan. "It was really exciting. I figured I'd make my five-minute remark and these people would tell me what I was missing. I expected them to have data to point to; I was prepared to learn."

Instead, there was little research on the proposed disorder, she says, certainly nothing that could be called hard data. Robert L. Spitzer, chairman of both the DSM-III and DSM-III-R task forces and a proponent of the category, acknowledged: "There was a small amount of evidence that the criteria held together. There were one or two studies, not without their problems."

After Caplan presented her argument, she says, there was a polite silence, then a committee member said: "But we have to have this category because we see patients like this all the time." Caplan was amazed; the utility of the diagnosis seemed to take precedence over considerations of scientific merit. Spitzer later confirmed that the rationale for retaining the category was: "Clinicians had found this a useful concept."

At the end of the hearing, Caplan recalls, the committee chair asked: "Shall we adjourn to the--dare I say it--the Freud Room?" In the Freud Room sanctum, the committee members, mostly men, decided to retain Self-Defeating Personality Disorder in DSM-III-R, where it appeared in the appendix of proposed categories needing further study, complete with a code number and a set of descriptive criteria. It was now fair game for clinicians to assign.

"We believe we listened to them and tried to understand their views," Spitzer says of the dissenters. "We didn't leave the meeting agreeing with them."

Caplan feels differently. "There is a breathtaking arrogance about those people that allows them to say things they can't begin to support," she says.

A LABEL CAN MARK A PROFOUND passage in a person's life. David Oaks was a sophomore at Harvard University in 1975 when emotional distress and what he describes as some mystical experiences landed him in a psychiatric ward. One psychiatrist examined him and labeled him schizophrenic, he says. A second psychiatrist diagnosed manic-depression. The two doctors stepped out into the hall and conferred, he says, then returned to present Oaks with his new label, straight out of DSM-III: schizophreniform, an illness similar to schizophrenia, but with less than six months' duration.

"When I was first labeled, it was almost like a religious thing, like going to a priest," Oaks says. "There was some degree of relief, a kind of giddiness, which I later realized was because I was literally giving up my power."

He was institutionalized for almost a week, one of five involuntary psychiatric hospitalizations during his years at Harvard. As a senior, he joined a mental-health patients support group and has been out of the hospital and off medication since. Oaks now co-coordinates Support Coalition International, a Eugene, Ore.-based worldwide network of "psychiatric survivors."

Even psychiatrists are not immune from the power of labels. Margaret Jensvold was the only woman doctor in a unit studying menstrual-related mood disorders at the National Institute of Mental Health in 1987. Soon after starting at the institute, she began complaining that her male co-workers made sexist and degrading remarks. Her supervisor forced her to see a psychiatrist because, he felt, she was demanding and had a hard time getting along with co-workers. The psychiatrist, she says, found Jensvold to have self-defeating personality traits, the traits that belonged to the category Caplan had fought so hard to have excluded.

"The first split second I was just in shock," recalls Jensvold, 37. "I was in shock that anyone could conceive of me as being self-defeating." Her next reaction: "I'm so glad I'm a psychiatrist. I know the history of this diagnosis and I know what he's trying to do to me. People had predicted if this diagnosis was in the DSM, women would be blamed for their own victimization, and that's just what they were doing to me."

Soon after she was pressured into therapy, her fellowship at the institute was terminated. Jensvold filed a sex discrimination lawsuit against her employer, and two months ago, a U.S. District Court jury in Baltimore awarded her a victory.

Self-Defeating Personality Disorder was dropped from the newest DSM manual, but it wasn't because the task force agreed that the label was prone to misuse. "That was not the major reason for not including it," Frances says. It was dropped for lack of documentation, he says, adding that it is a useful concept in therapy but does not "translate well into descriptive psychiatry."

PATIENT ADVOCATES SAY that the problem is not so much the labels themselves but the power and authority behind them. "This is an extralegal document," says Oaks of Support Coalition International. "The worst thing about it is the force that backs it up. They have to label you to do something to you."

The legal implication of a DSM tag varies from state to state, but anyone who is found to have a mental disorder may lose certain rights. In California, for example, people can be committed to an institution if they cannot provide for their own food, clothing or shelter. Jean Matulis, a Glendale attorney who works with mentally disabled clients, gives this scenario: "Your parents kick you out; you don't have a place to live. If a psychiatrist comes along and says that's because of a mental disorder, you can be committed."

Insurance companies can regard a DSM diagnosis the way they would a pre-existing medical condition. Jim Preis, executive director of Mental Health Advocacy Services in Los Angeles, says his agency sometimes hears from clients who have had coverage discontinued. "People with mental disabilities do get cut off from insurance," he says, and legal challenges are often unsuccessful.

In legal proceedings, Matulis says, "the DSM has a lot more weight than it probably deserves, when it's really only the collective hunches of a bunch of people."

Some lawyers go so far as to argue for labels to be banned from courtrooms. "These labels furnish virtually zero useful legal information," says Stephen J. Morse, professor of law and psychiatry at the University of Pennsylvania, who specializes in mental health and the law. "They're diagnostic pixie dust."

Of course, most people who go to the corner shrink for Prozac are not going to lose their children or their jobs, or be stigmatized in any overt way. In many cases, the labels allow psychiatrists to work more efficiently. Patients often describe common problems, says San Fernando Valley psychiatrist Graff, and the DSM allows the doctor to quickly identify the disorder.

The labels are also useful in communicating with other health professionals. "It's a shorthand way of conveying a lot of information in one word, or one number," says Beverly Feinstein, a Santa Monica psychiatrist, adding that she's uncomfortable with labeling every patient. "(But) it also helps us decide whether medication is indicated. And having a label can help patients learn about their illness and connect with others with the same illness."

"Patients often feel uniquely damned--like they're the first person to invent a particular problem," says Frances, the DSM-IV chairman. "But the DSM shows them their problems are generally so common and well-described that they're right down there on paper. This can be very relieving."

Patients advocates like Oaks and Breggin say the DSM upholds a power differential in society by classifying only those who are already powerless and on the fringes--people who hear voices, are afraid, or who don't fit prescribed gender roles. "If you're a girl who complains about being a girl, you're in the book," says Oaks. "You're in trouble." And, he points out, what is not in the manual is as revealing as what is. Traits often associated with people in power are nowhere to be found. "Where are the categories for greed, racism, exploitation?" he says.

To illuminate the point that behaviors associated with those in power don't make it into the DSM, Paula Caplan submitted for inclusion in the new manual a proposal for a category she called Delusional Dominating Personality Disorder, also called Macho Personality Disorder or John Wayne syndrome. If there were to be classifications for traditionally female emotional distresses, she reasoned, then there should be a category for stereotypically male traits.

Arguing against the proposal, former DSM chief Spitzer says: "It was an effort to embarrass us and make us look silly. Every undesirable social attitude doesn't necessarily constitute a mental disorder."

THE INTEGRITY OF THE DSM--AND perhaps all of psychiatry--hinges to a large degree on reliability. After all, physical medicine is fairly reliable. Two internists, presented with the same patient and the same symptoms, are likely to diagnose, say, appendicitis. If DSM diagnoses could be declared reliable, psychiatry would edge closer to the domain of physical medicine. Reliability equals science. Reliability equals respect.

Because the concept is so critical, the American Psychiatric Assn. widely touted the reliability of DSM diagnoses in the past. But Spitzer now admits that those claims were overblown. "We've greatly improved reliability," he says. "But it's still far from satisfactory in many areas. We're not nearly there."

The same could be said of claims that the newest DSM is moving closer to science. The committees did base their decisions on documentation, but there was no standard for how much or what kind of documentation a disorder had to have to be included. The four-out-of-five-symptoms-means-you're-crazy criteria have been extensively criticized for being unscientific. And some of the criteria are so vague that claims to strict science are dubious. For an individual to be found to have Oppositional Defiant Disorder, for instance, he must meet four of eight conditions for at least six months. Among the symptoms: often loses temper; is often touchy or easily annoyed; is often angry and resentful; is often spiteful or vindictive. In a bad year, this could be almost any of us.

Frances counters such criticism by saying it all depends on how science is defined. "A naive conception of science is that the data come up and hit you in the face," he says. "There's always an element of interpretation." Spitzer adds, "The spirit of the DSM is a scientific spirit."

In fact, for some people, the big burgundy book has taken on an absolutism that the DSM architects may never have intended, but psychiatry is not entirely to blame. The introduction to the manual includes several pages of disclaimers, caveats and cautions suggesting, for example, that the diagnoses not be taken too literally, especially in some legal settings. The diagnostic model can be "reductionist and dumb" if applied too rigidly, Frances says. "We encourage clinicians to use their judgment. The DSM has great utility as a clinical and research tool if we're not too slavishly bound by it," he adds.

Despite the profession's warnings, many people have willingly taken on the yoke of labels. It's as if the doctors penned the constitution of the psychiatric state and the people ratified it and exalted it. Yet, the people can also "pull the plug" on the DSM, as Oaks advocates. After being told she has Self-Defeating Personality Disorder, Jensvold wrote a letter to task-force head Frances: "It recently occurred to me that if they can label me, then I can label me. I say I have self-empowering personality."

Copyright © 2019, Los Angeles Times
EDITION: California | U.S. & World