The Book of Woe: The DSM and the Unmaking of Psychiatry

by Gary Greenberg

  For this, I can thank the APA. Not that they decided to talk directly to me, but they did use the trustees’ rubber-stamping of the final draft at the beginning of December 2012 as an occasion to release some details1—among them, the price of the new book, $199. As expected, Hoarding Disorder and Disruptive Mood Dysregulation Disorder were in, Asperger’s was out, and Attenuated Psychosis Symptoms Syndrome was in the Appendix, now officially renamed Section 3, where it would be joined by all the dimensional measures and the “trait-specific methodology” proposal for personality disorders. (Those diagnoses would revert largely to their DSM-IV versions.) Section 3 would also include “the names of individuals involved in DSM-5’s development.” I’m looking forward to finding out if my name is among them.

  The summary left unanswered some important questions. For instance, while it said that Asperger’s would be “integrated” into the autistic spectrum, it did not spell out exactly how, or whether the APA would retain ownership of the name or relinquish it to all those Aspies in search of an identity. Neither did it illuminate a persistent rumor: that currently diagnosed Asperger’s patients would be “grandfathered,” keeping the diagnosis even if the disorder was eliminated. It mentioned that the bereavement exclusion had been replaced by “several notes within the text delineating the differences between grief and depression,” but did not elaborate except to say that the change “reflects the recognition that bereavement is a severe psychosocial stressor that can precipitate a major depressive episode beginning soon after the loss of a loved one.” What a clinician, astute or otherwise, was supposed to do with that recognition was not made clear.

  The press release did offer some reassurances to a skeptical public. “We have sought to be very conservative in our approach to revising DSM-5,” David Kupfer said. “Our work has been aimed at more accurately defining mental disorders that have a real impact on people’s lives, not expanding the scope of psychiatry.” And Jay Scully reminded reporters that the process had been “as open and independent as possible. The level of transparency we have strived for is not seen in any other area of medicine.” An e-mail sent by Kupfer and Regier to task force and work group members in advance of the press release elaborated on just how open and independent that was. “We do ask that you focus2 your interviews on the disorder and refrain from talking about the criteria or text,” it read. They apparently didn’t want anyone to spoil the surprise.

  The trustees’ vote triggered a spate of news coverage, some of it summarizing the APA’s summary, some of it opining for or against, and at least one article—in The Washington Post3—repeating charges of corruption in the process, this time by reporting on the study that Sid Zisook, architect of the bereavement policy, once ran proving that Wellbutrin was effective in the bereaved. The APA responded with a press release under David Kupfer’s byline, reiterating all that the task force had done to eliminate conflicts of interest and assuring the public that “DSM-5 includes material4 to make sure that it is understood that sadness, grief, and bereavement are not things that have a time limitation to them or go away within two or three months.” What it meant that psychiatrists had to be told this, or what they would do now that they had been informed, Kupfer did not say.

  Two weeks after the vote, psychiatric diagnosis was back on the front pages, this time when a young man armed with a semiautomatic weapon slaughtered twenty children at an elementary school in Connecticut. Dilip Jeste, the APA president, told Congress5 that the tragedy, which occurred “at the very time [that] federal and state funding for critical mental health services is under siege,” was a reminder that, because mentally ill people in treatment are “considerably less likely to commit violent acts” than those who are untreated, Congress should “act to protect federal funding for mental health . . . research and services.” Three days later, however, after the National Rifle Association’s Wayne LaPierre told the nation that no matter how many rounds they can fire in an instant, guns don’t kill people, “lunatics” kill people, and suggested that the solution to the problem was a registry of mentally ill people whose diagnoses would presumably lose them their Second Amendment rights, Jeste took a different approach. Not only was LaPierre’s language “offensive6,” he said in a news release, but “only four to five percent of violent crimes are committed by people with mental illness,” and that “only a small percentage” of the 25 percent of Americans who will come down with a mental disorder in any given year “will ever commit violent crimes.” Gun violence, in other words, was not an indication of mental illness unless there was money to be made.

  Al Frances responded to the trustees’ vote with what he promised would be his last blog on the subject. “The saddest day7 in my 45-year career,” he wrote, and urged clinicians to “ignore its ten worst changes,” which he enumerated. “Apparently they deleted a few irrelevant things and approved all the junk that was left,” he e-mailed.

  Ten days later, Frances broke his promise, telling readers that the APA had “one last act8 to save DSM 5 before the curtain drops,” and warning that unless the organization used the remaining time to fix the outstanding problems (and add a black-box warning about the dangers of overdiagnosis), the new manual would be “a financial as well as a clinical, scientific, and artistic flop.” He repeated this warning in a series of e-mails to the APA’s leaders, in which he promised to shut up if they heeded his advice. They did not take him up on his offer.

  The APA wasn’t the only organization ignoring Frances. In the wake of the trustees’ approval, many proposals to boycott the DSM-5 sprang up—a dozen, by his account. He urged comity. “Any new boycott must unify the diverse opposition9,” he wrote, “not further fragment what is already a very fragmented field.” But the groups did not coalesce into a single movement, nor did the antipsychiatrists among the dissidents heed his call to stop using his name (“without permission,” he pointed out) to support their cause. Frances was left to explain once again that his attack on his profession’s foundational text was not an attack on the profession itself.

  For his part, Michael First was back on the inside. In late November, I asked him about a rumor I’d been hearing all fall: that the APA had called him to duty to help finalize the manual. “I can confirm10 it’s true,” he e-mailed, “but I really cannot say anything else. Sorry.” He wasn’t going to jeopardize his ability to do once again what he’d been born to do. An insider, who also wouldn’t go on the record, made it clear that his role was limited: reviewing criteria for consistency, editing them for clarity, and making sure the book could be used by clinicians.

  First was willing to give me his overall appraisal of the outcome. “The good news11 about the DSM-5 is also the bad news,” he e-mailed. “While many little things have changed for the better, and clinicians will find the transition relatively easy to make, the fundamental problems with the descriptive approach remain.” It still explains little, offers scant treatment guidelines, and “relies on categories that facilitate clinician communication but have no firm basis in reality. So I think it’s an improvement,” he concluded, “but it’s also an acknowledgment that psychiatry, especially in its understanding of mental illness, is still in its infancy.” Whether the profession can grow up remains to be seen.

  Acknowledgments

  At Wired, where this book got its start (and its title): Bill Wasik and Bess Kalb.

  At Blue Rider Press: Aileen Boyle, Anna Jardine, Phoebe Pickering, David Rosenthal, and the inestimable Sarah Hochman.

  For crack agentry: Jim Rutman.

  For reading and comment on parts of the manuscript: Barney Carroll, Bill Musgrave, and Stuart Vyse.

  For reading and comment on the entire manuscript: Rand Cooper, Gideon Lewis-Kraus, and Michelle Orange.

  For interviews that no doubt turned out to be more than they bargained for, not to mention all those follow-up e-mails: Bill Bernet, Michael Carley, Gabrielle Carlson, Will Carpenter, Jane Costello, Bruce Cuthb
ert, Max Fink, Paul Fink, Steve Hyman, Tom Insel, Nomi Kaim, Ronald Kessler, David Kupfer, John Livesley, Catherine Lord, Steve Mirin, Bill Narrow, Roger Peele, Harold Pincus, Darrel Regier, Jay Scully, David Shaffer, Andrew Skodol, Bob Spitzer, Fred Volkmar, Jerry Wakefield, Barbara Wiechmann, Tom Widiger, and Sid Zisook.

  For research materials and editorial assistance: Paula Caplan, Beth Card, Bart Laws, Ned Shorter, Steve Silberman, Katherine Sticklor, and Ken Kendler.

  For careful proofreading: Ruth Greenberg.

  For honesty, patience, and generosity: Michael First.

  For honesty, patience, generosity, and hospitality, sometimes against their better judgment: Allen Frances and Donna “Peach” Manning.

  And, as always, for bringing out my best and putting up with my worst, and for her blue eyes: Susan Marie Powers.

  Notes

  Chapter 1

  1. “In noticing a disease”: Cartwright, “Diseases and Peculiarities of the Negro Race,” Part 1, 332.

  2. “the disease causing Negroes”: Ibid., 331.

  3. Two classes of persons: Ibid., 332.

  4. “whipping the devil”: Ibid.

  5. “submissive knee-bender”: Ibid.

  6. “northern hornbooks in Medicine”: Cartwright, “Diseases and Peculiarities of the Negro Race,” Part 2, 506.

  7. “demonstrated, by dissection”: Ibid., 505.

  8. “the membranes, tendons, and aponeuroses”: Ibid., 506.

  9. dyaesthesia aethiopica: Cartwright, “Diseases and Peculiarities,” Part 1, 333.

  10. “the learned Dr. Cartwright”: Olmsted, Journeys and Explorations, 122.

  11. “the nervous erythism”: S. B. Hunt, “Dr. Cartwright on ‘Drapetomania,’” 441–42.

  12. They underwent countless therapies: For an account of the treatment of homosexuals, see LeVay, Queer Science, chapter 4.

  13. 11 percent of the U.S. adult population: Centers for Disease Control, “NCHS Data Brief, October 19, 2011,” http://www.cdc.gov/nchs/data/databriefs/db76.htm.

  14. you got tired of feeling numb: For side effects of antidepressants, see Glenmullen, Prozac Backlash.

  15. placebo effect: Kirsch, The Emperor’s New Drugs.

  16. this chemical imbalance does not, as far as doctors know: Greenberg, Manufacturing Depression.

  17. more than seventy combinations of symptoms: See DSM-IV-TR, 356. There are nine symptoms of depression, but patients need have only five in any combination to earn the diagnosis.

  18. “another [of] the ten thousand”: Cartwright, “Diseases and Peculiarities,” Part 1, 336.

  19. “Love is a madness”: Plato, Phaedrus, 265e.

  20. Before John Snow: The best account of this famous story is probably Steven Johnson’s The Ghost Map.

  21. Louis Pasteur and Robert Koch: Ullmann, “Pasteur–Koch.”

  22. “blessed rage to order”: Stevens, “The Idea of Order at Key West,” The Palm at the End of the Mind.

  23. Adam and Eve: Genesis 2:19–21.

  24. “loose, baggy monster”: Henry James, The Tragic Muse, 4.

  25. “insomnia, flushing, drowsiness”: Beard, American Nervousness, 7–8.

  26. “As long as I live”: Gay, Freud, 491.

  27. “It burdens [a doctor]”: Freud, The Question of Lay Analysis, 95.

  28. “the mental sciences”: Ibid., 88–90.

  29. “the patient’s ambivalent feeling”: American Psychiatric Association, DSM-I, 34.

  30. a psychologist showed: Ash, “The Reliability of Psychiatric Diagnoses.”

  31. By 1962, despite various attempts: Summarized in Beck, “Reliability of Psychiatric Diagnoses.”

  32. doctors in Great Britain: Sandifer et al., “Psychiatric Diagnosis.” See also Kendell et al., “Diagnostic Criteria of American and British Psychiatrists.”

  33. Erving Goffman and Michel Foucault: See Goffman, Asylums, and Foucault, Madness and Civilization.

  34. The DSM instructs users: American Psychiatric Association, DSM-IV-TR, xxxi–xxxii.

  35. “perhaps the most powerful psychiatrist in America”: Daniel Goleman, “Scientist at Work,” The New York Times, April 19, 1994.

  36. “Here’s the problem”: Allen Frances interview, August 16, 2010.

  37. the lead of the Wired article: Gary Greenberg, “The Book of Woe: Inside the Battle to Define Mental Illness,” Wired, December 2010, 126–36.

  38. “Bullshit is unavoidable”: Frankfurt, On Bullshit, 63.

  39. “neither on the side of the true”: Ibid., 56.

  Chapter 2

  1. “The present classification of mental diseases is chaotic”: Salmon et al., “Report of the Committee on Statistics,” 256.

  2. “It cannot be supposed”: Jarvis, Relation of Education to Insanity, 4–5.

  3. “Within the last fifty years”: Ibid., 6.

  4. “In an uneducated community”: Ibid., 8.

  5. “From all this survey”: Ibid., 11.

  6. “In the present state of our knowledge”: Grob, “Origins of DSM-I,” 231. Emphasis in original.

  7. “had become marginal”: Shorter, History of Psychiatry, 144.

  8. “Pathological anatomy”: Kraepelin, Lectures, 27.

  9. “poetic interpretation”: Kraepelin, “Manifestations of Insanity,” 512.

  10. he took a Kraepelinian approach: Salmon, “Report of the Committee on Statistics,” 256–59.

  11. the association issued the Statistical Manual: Grob, “Origins of DSM-I,” 426.

  12. its last edition ran to seventy-one pages: American Psychiatric Association, Statistical Manual for the Use of Hospitals.

  13. a membership of only 2,295 doctors: Grob, “Origins of DSM-I,” 427.

  14. “Our experiences with therapy”: Quoted in Grob, “Origins of DSM-I,” 428.

  15. Psychoanalysis proved easy enough to adapt: For a detailed account of this shift, see Zaretsky, Secrets of the Soul, especially chapters 10 and 11.

  16. only 10 percent of their cases: American Psychiatric Association, DSM-I, vi.

  17. “At least three nomenclatures”: Ibid., vii.

  18. “stepchild of [the] Federal Government”: DSM-I, x.

  19. Anxiety Reaction: DSM-I, 32.

  20. Depressive Reaction: DSM-I, 33.

  21. “disorders of psychogenic origin”: DSM-I, 24.

  22. “Instead of putting so much emphasis”: Menninger, The Vital Balance, 325.

  23. “Man in transaction with his universe”: Quoted in Wilson, “DSM-III and the Transformation of American Psychiatry,” 401.

  24. it had become a professional backwater: Wilson, “DSM-III,” 403.

  25. “compared to other types of services”: Quoted ibid.

  26. The war over the homosexuality diagnosis: For a full account, see Bayer, Homosexuality and American Psychiatry.

  27. Ego-Dystonic Homosexuality: DSM-III, 281–82.

  28. “If groups of people march”: Bayer, Homosexuality and American Psychiatry, 141.

  29. “Referenda on matters of science”: Ibid., 153.

  30. “Psychiatry was regarded as bogus”: Robert Spitzer interview, August 27, 2010.

  31. “I was uncomfortable with not knowing”: Spiegel, “The Dictionary of Disorder.”

  32. By 1972, the group had described: Feighner et al., “Diagnostic Criteria for Use in Psychiatric Research.”

  33. Research Diagnostic Criteria: Spitzer et al., “Research Diagnostic Criteria: Rationale and Reliability.”

  34. A. One or more distinct periods: Ibid., 776.

  35. the nosology would inexorably gain substance: Ibid., 781–82.

  36. “The use of operational criteria”: Ibid., 781.

  37. a conclusion he published in the Archives of Sexual Behavior: Spitzer, “Can Some Gay
Men and Lesbians Change Their Sexual Orientation?”

  38. a letter to the Archives: Spitzer, “Spitzer Reassesses His 2003 Study of Reparative Therapy.”

  Chapter 3

  1. “In the morning, everyone would be screaming ideas”: Allen Frances telephone interview, November 23, 2011.

  2. people who “employ self-sacrificing and self-defeating behavior”: Siever and Klar, “A Review of DSM-III Criteria for the Personality Disorders,” 304.

  3. “dumb idea”: Allen Frances e-mail, November 27, 2011.

  4. “The fact that we had a descriptive system only revealed”: Allen Frances interview, August 16, 2010.

  5. “loving the pet, even if it is a mutt”: Allen Frances e-mail, September 3, 2010.

  6. “seemed a bit like stamp collecting”: Hyman, “The Diagnosis of Mental Disorders: The Problem of Reification,” 157.

  7. “The tendency [is] always strong”: James Mill, Analysis of the Phenomena of the Human Mind, 5. The quotation is from a footnote appended to a later edition of Mill’s 1829 book by his son John Stuart Mill.

  8. “It became a source of real worry”: Ibid.

  9. “I realized that it got me nowhere”: Steven Hyman e-mail, October 5, 2012.

  10. the Post had twice come out against parity: “The Mental Health Amendment,” The Washington Post, April 28, 1996; and “‘Parity’ in Health Insurance,” The Washington Post, December 4, 2001.

  11. They “asked questions”: “Changes Put APA on Right Track to Face Future,” Psychiatric News, October 4, 2002.

  12. They’d asked twenty thousand people: The questionnaire is available in Robins and Regier, Psychiatric Disorders in America, 401–26.

  13. The ECA’s findings: Ibid., 333.

  14. And the sick among us were really sick: Ibid., 357.

  15. only 19 percent: Ibid., 361.

  16. the paper came out in favor of parity: “Equity for Mental Illness,” The Washington Post, September 9, 2002.