When, late in the seventeenth century, the playwright Nathaniel Lee was incarcerated in Bethlem Lunatic Asylum -- the infamous "Bedlam" -- he protested his consignment by declaring: "They called me mad, and I called them mad, and damn them, they outvoted me."
And when, late in the twentieth century, gay-rights advocates protested the labeling of homosexuality as a mental disorder in the American Psychiatric Association's The Diagnostic and Statistical Manual of Psychiatric Disorders (DSM) -- "a pathological deviation of normal sexual development" -- the American Psychiatric Association (APA) had its membership vote on the issue. In a 1974 referendum, the membership voted 58 percent to 42 percent to eliminate the category, and so it was deleted. This may have been, as Gary Greenberg wrote in Manufacturing Depression: The Secret History of a Modern Disease, "the first time in history that a disease was eradicated at the ballot box."
The first new edition of the DSM in 19 years -- the DSM-5 --is appearing in May of this year, and its influence cannot be overestimated: its diagnostic categories are required for private insurance reimbursement, government payments for mental health treatment, and for public and private research funding. It serves as the basis of psychiatric law for our court systems, regulatory agencies, schools, social services, prisons, juvenile detention facilities, and drug companies.
When the APA released a proposed draft of "content changes" for the DSM-5, more than a half-million responses, mostly critical, appeared on Google.
"What happens is this," explains Frank Putnam, a professor of pediatrics and child psychiatry at Children's Hospital Medical Center in Cincinnati. "You need a diagnosis to bill -- that's the way the world works. Most of the interventions we do at my center aren't billable -- we lose $220 for every kid we see. You can't just treat somebody without giving a formal diagnosis," and as a result, "the DSMhas become the tail that wags the dog." In addition, without an official diagnosis, there's no money for research, since you can't, for example, go to the National Institute of Mental Health and ask to be funded for a non-existent disease.
The first edition of the DSM, published in 1952, included 106 diagnostic categories and was 130 pages long. The most recent edition (DSM-IV), published in 1994, and revised in 2000 (DSM-IV-TR), contained somewhere between 350 and 400 categories, and was 943 pages long. When the APA released a proposed draft of "content changes" for the DSM-5, which will be 1,000 pages long, more than a half-million responses, mostly critical, appeared on Google. When it came to Major Depression, for example, the DSM-IV had made an exclusion for "bereavement." If, however, the APA's proposal to remove the bereavement exclusion from the new edition is implemented, anyone who is sad, fails to derive pleasure from usual activities, finds it difficult to concentrate, and has sleep and appetite difficulties for a mere two weeks can be diagnosed with Major Depressive Disorder. Because most of us will be bereaved -- of parent, child, sibling, or close friend -- at some point in our lives, this proposal has the potential to pathologize an enormous number of people.
Dr. Allen Frances, who had been chair of the DSM-IV Task Force, called the final draft of the new edition "deeply flawed" with "changes that seem clearly unsafe and scientifically unsound." He was especially concerned with the effect of the proposed changes on primary care clinicians, who write the vast majority (59 percent) of prescriptions for anti-depressant and anti-anxiety medications, who have limited time (and expertise) to work with patients to determine if their distress is a result of ordinary human suffering or a true "mental disorder," and who work in "an environment heavily influenced by drug company marketing."
How much of a difference do DSM-generated diagnoses make? My brother Robert has been a mental patient for the past 50 years, and when, during these years, people have asked what his diagnosis was, if I replied with a clinical term --"schizophrenia," "manic-depression," -- they would nod knowingly. In recent years, what I've done is to reply to their questions with questions of my own: If I tell you my brother has schizophrenia, what will you know? What will you know about Robert -- about his condition, about his life, about who he is?
When my brother repeated a request to a psychiatrist for a diet of kosher food, the psychiatrist screamed at him to "stop talking like a lunatic."
To perceive a human being as being a diagnostic category -- a "schizophrenic" or "a depressive" -- dehumanizes that person, and when it comes to people who suffer mental illness, this is the way many, including physicians, too often see them. Thus, when my brother repeated a request to a psychiatrist for a diet of kosher food, the psychiatrist screamed at him to "stop talking like a lunatic." But Robert and I grew up in an strictly kosher home, and if the psychiatrist had any sense of empathy, or even curiosity, he might have discovered that Robert's request was attached to yet one more element of his life that had, through the years, been lost.