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.
"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?
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.
Since there are no known or agreed-upon biological or chemical causes for any of the mental illnesses, it would, at the least, be helpful to have the mental health profession, advocacy groups, government agencies, and drug companies stop claiming that because mental illnesses result from alleged "brain diseases" or "chemical imbalances," these conditions can be cured by medications. (Even David Satcher, who, when U.S. Surgeon General, endorsed a government report that supported a strong bio-chemical version of mental illness, admitted that "the precise causes of mental disorders are not known.")
While thousands of physicians and researchers argue about often arbitrary and ever-changing diagnostic distinctions, and while vast resources are expended in this enterprise, wherever individuals suffer from the misery and confusion of chronic mental illness, and from the stigmatization, despair, and shame that invariably accompany this pernicious condition, they often remain in pain and in need.
On the day the APA released its draft proposals, The New York Times reported that New York State did not have a single full-time psychiatrist overseeing the treatment of 800 or so young people in state detention facilities, "the vast majority of whom suffer from some form of mental illness." Three weeks later, a federal judge ordered the state to move 4500 people with serious mental illnesses out of adult homes within three years -- out of residences The Times had called "psychiatric flophouses." The state disputed the judge's ruling, claiming the best it could do would be to find supported housing units for 200 residents a year for a maximum of five years.
Robert, living until recently in a Manhattan group home with 14 others who have long-term mental illnesses, is on 17 different daily medications, has no teeth or dentures, suffers drug-induced Parkinsonism caused by years of antipsychotic drugs (drooling, tremors, walking disabilities), and despite repeated pleas for regular or even occasional talk-therapy, receives none.
Although he and his housemates are not caged in dreary, locked, and overcrowded state asylums the way they were a generation ago, and though a newer generation of medications seems to have fewer nasty side-effects than those prescribed in earlier times, they live in relative isolation from the rest of the world,. In the half-dozen years I have regularly visited with my brother, I never saw a single family member or friend visiting another resident. I wonder, then, what difference the revised diagnostic categories will make in their lives.
On one visit, Robert, obsessing about money, began explaining all the "income" he was expecting -- from Social Security, from his bank account at his residence, from his monthly SSDI allowance, etc.
"I have all this income," he said. "But do you know what my problem is?"
"No," I said. "What's your problem?"