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

by Gary Greenberg

  Helena Kraemer, chief architect of the field trials, had said as much earlier in January. Writing in the American Journal of Psychiatry, she had “set out realistic expectations10” for her project, starting with the “contentious issue” of prevalence. Rates were going to change, Kraemer warned. Some new criteria were going to pick up more mental disorder in the population, and some were going to exclude people who might previously have been included. The only way to avoid these outcomes would be “to require that any existing difference between true and DSM-IV prevalence be reproduced in DSM-5”—or, to put it another way, to rig the game to leave prevalence unchanged. “Thus,” Kraemer concluded, “there are no specific expectations about the prevalence of disorders in DSM-5.”

  But who was expecting that diagnostic rates would remain unchanged? Surely not Wakefield and First and Frances, or any of the civilians worried about the reach of psychiatry. Like Kraemer, they fully expected prevalence to change; what worried them was the possibility this would lead to epidemiological chaos. But unlike Kraemer, they weren’t in a position to find out, and, as she made clear in her very next sentence, she was not going to do that.

  “The evaluations primarily address reliability,” Kraemer wrote, as if it somehow followed that because prevalence rates were bound to change, they weren’t worth looking into.*

  She didn’t explain further, so it is possible that this is not what she meant. Perhaps Regier had decided the problem that attracted him to the field—the Midtown Manhattan Study’s wild prevalence rates—was suddenly unimportant, or Kupfer had decided to leave the question to his imaginary gadfly friends. Maybe Kraemer thought her readers would leap over the gap in logic and assume that the only reasonable thing to do was to abandon the subject of how many people would be declared mentally ill in favor of the question of whether psychiatrists could agree on which mental illnesses they had. (Of course, as she had announced the previous May and repeated in the AJP article, people should temper their expectations about that subject as well.) But whatever the reasoning, it was clear that the field trials hadn’t been designed to address the issue. In fact, it seemed as if they’d been designed not to, as if the prevalence question needed to be avoided at all costs because the answers might be too disturbing, because they couldn’t help but point to the fact that the diagnostic sands were still shifting, and thus undermine confidence in the APA.

  Okay, maybe that’s too much like The Parallax View. Certainly the APA’s disorganized, off-the-point, whiny response was pretty Keystone Kops. And even the most sure-footed organization might well have been knocked to its knees by the rush of events.

  Scully and his crew barely had time to draw breath before The New York Times struck again—this time with a pair of op-ed columns11 about Asperger’s appearing on the same day, one by a psychiatrist who acknowledged that it was overdiagnosed (and looked forward to a time when “biological markers” would separate the sick from the weird), and the other by Benjamin Nugent, a writer whose psychologist mother, an expert in Asperger’s, had gotten him diagnosed when he was a teenager, but who, after he “moved to New York City and . . . met some people who shared my obsessions,” realized he wasn’t sick at all.

  Before the APA could accuse all these writers of believing that mental illnesses don’t exist, or wonder if the Church of Scientology had bought The New York Times, the news that the DSM-5 would throw kids out into the diagnostic cold had spread to more than one hundred outlets in twelve countries. In Great Britain, a group of dissenting psychologists and psychiatrists called a press conference. “The proposals in DSM-512 are likely to shrink the pool of normality to a puddle,” one of them said, and the sound bite made it into papers and blogs all over the world. The Lancet13, perhaps the most venerable of all medical journals, ran, in a single issue, a report on research showing Attenuated Psychosis Risk Syndrome to be invalid, an editorial decrying the removal of the bereavement exclusion, and a moving essay by the Harvard medical anthropologist Arthur Kleinman about his grief after losing his wife of forty-six years. A year later, Kleinman wrote, “I still feel sadness14 at times and harbour the sense that a part of me is gone forever. . . . I am still caring for our memories. Is there anything wrong (or pathological) with that?” Even politicians were piling on. State legislators in Illinois and New York introduced bills proposing to make the DSM-IV definition of autism, Asperger’s, and Pervasive Developmental Disorder the law of their lands, “even if,” as the Illinois version put it15, “subsequent changes to the diagnostic criteria are adopted by the American Psychiatric Association.”

  So it’s no wonder the APA was on its heels and in disarray. Or at least that’s my explanation for their surprisingly ineffectual response. When they weren’t launching ad hominem attacks or whining that they were the misunderstood victims of their own good intentions, or repeating their long-stale talking points to reporters and in mostly ignored press releases, they were silent. They didn’t bother responding, by letter or column, to the onslaught in The New York Times. They didn’t answer Kleinman or The Lancet or hold a news conference of their own to counter the British renegades’ arguments. They didn’t expound on the philosophical and scientific conundrums posed by psychiatric diagnosis. They didn’t argue that diagnostic uncertainty was the rule rather than the exception in medicine. They didn’t warn people not to take the DSM too seriously. They didn’t even make the obvious point that the two articles in the Times—one of which thrashed the APA for diagnosing too few people, the other for diagnosing too many—were at least an indication that it wasn’t trying to fix the game either way. Perhaps the APA’s leaders were shell-shocked, or tired, or simply lacked the intellectual horsepower to respond. Maybe they really believed, as David Kupfer told MedPage Today, that even though the deadline was rapidly approaching, “the door is still very much open16” to changes. Or maybe they had figured out that when the DSM-5 came out in May 2013, none of these complaints, no matter how trenchant or eloquent, not Frances’s or Wakefield’s or First’s, not The New York Times’ or The Lancet’s—not one of them would matter. Maybe they decided that since they had the ball—indeed, they owned the ball—they could just duck their heads and run out the clock.

  • • •

  There was one other DSM-related op-ed in The New York Times in late January. I wrote it. “You’ve got to feel sorry17 for the American Psychiatric Association,” it began, “at least for a moment.” I wasn’t being entirely ironic. I did feel a little sorry for the APA. Not that the organization deserved my sympathy or needed my help, but there was something nearly pathetic about its inability to mount a spirited defense of its own work, about the fear that prevented it from telling us what all its members knew: that the disorders listed in the DSM were not real diseases, but, as my essay put it, “useful constructs that capture the ways people commonly suffer,” that this is why the arguments were fraught and endless, and that it was foolish to think this task force would come up with anything better than previous task forces: provisional categories that would inevitably change with time. The APA couldn’t, or wouldn’t, say this—perhaps because it would turn into fodder for its enemies—so I said it for them. It seemed like the least I could do.

  Plus I got to quote Herb Peyser: “We’re like Cinderella’s older stepsisters. We’re trying to stick our fat feet into the delicate slipper so the prince can take us to the ball. But we ain’t going to the ball right now.” I thought this image captured the problem perfectly. I still do.

  I did not receive a thank-you note from the APA’s Office of Communications. That might be because I ended the essay by saying that even if it wasn’t going to the ball anytime soon, once the DSM-5 came out, the APA would be laughing all the way to the bank. But I did get an e-mail from Frances, sent at six a.m. the day the article ran. In its entirety, it read:

  From: Allen Frances

  To: Gary Greenberg

  Subject: As the scorpion told the frog

&n
bsp; What do you expect, I am a scorpion.

  Sent from my Verizon Wireless BlackBerry

  I asked him to elaborate and got this back:

  When you had an incredible platform to help contain DSM 5 damage, you couldn’t contain your antipsychiatry quixotic instincts and instead had bigger fish to fry. This is unfortunate for a Panza like me (with much smaller ambitions like protecting kids from antipsychotics) because your broadside against psychiatry allows the DSM 5 crowd to simply shrug you off . . . So in tilting against windmills, you made yourself irrelevant to DSM 5.

  I’m not sure where Frances got the idea that I wanted to be heard by the DSM-5 crowd. It was clear, however, why he saw my article as antipsychiatry: because I had said out loud, while standing on that “incredible platform,” that his profession’s authority rested on nothing more than agreement among experts. Not that he denied this, but he was sure it should not be said so publicly, and it was making him wonder if he’d made a mistake by being so candid with me.

  “I often ask myself why I am so good to you when I know you will stab psychiatry in the back,” he had written earlier. He answered his own question. “It is the Prince Myshkin in me.” But, as was often the case when Frances called himself an idiot, it seemed his real barb was directed elsewhere.

  Frances’s winter of discontent was lasting into spring. “The man is an absolute fool and an incorrigible tool,” he wrote of one DSM-5 activist. The psychologists’ petition was “dying as the feckless humanists fiddle.” Paula Caplan had started her own petition, calling for a boycott of the DSM and for congressional hearings into the harmful effects of psychiatric diagnosis. Infighting among the groups opposing the APA was growing. “This is getting really disgusting,” he wrote.

  There were a couple of bright spots. Late in February, the Department of Health and Human Services confirmed that the ICD-10 would not be implemented until October 2014, meaning that the APA no longer needed to hurry the DSM to publication in 2013. In early March, a psychologist’s blog post about the bereavement exclusion attracted 65,000 hits in four days—“a spontaneous revolt by the large community of the bereaved,” Frances wrote in the Psychiatric Times—and his latest hope for a tipping point. And the APA handed him a rhetorical opportunity when it hired James Tyll, a former Pentagon flack, to handle its DSM communications, and he promptly told a Time reporter that Frances was a “‘dangerous’ man trying to undermine an earnest academic endeavor.”

  “Fresh from DoD,” Frances riposted in The Huffington Post, “it may be difficult for the new spokesman to leave behind combat clichés. Who knows? I may have become a picture card in his deck of high-value targets.”

  But overall Frances’s tone was darkening. “How can you possibly continue to fiddle?” he asked his former friends on the back channel. In an open letter he urged the board of trustees to keep the bereavement exclusion, get rid of Disruptive Mood Dysregulation Disorder and Attenuated Psychosis Symptoms Syndrome, and abandon Hebephilia “before more harm is done.” Take these steps, he wrote, and they would prevent a further loss of “public and professional faith,” reduce the likelihood of overdiagnosis and overmedication, and “allow me to throw my cursed BlackBerry into the ocean.” And in case that wasn’t enough to spur them to action, he added that “as the responsible leaders of the APA, you cannot avoid your fiduciary responsibility to regain control of the staff and to rein in a runaway DSM-5 process.” Otherwise, he wrote, they risked “dramatically reduced DSM-5 sales, APA budget shortfalls, declining membership, and the potential loss of the DSM franchise.”

  After all his appeals to common sense and professional wisdom, to aristocratic humility and the spirit of moderation, Frances was apparently reduced to hoping that it was true what they say about capitalism: that money talks.

  • • •

  “Wonderful news18,” Frances blogged in late April. He had caught wind of some changes—that Attenuated Psychosis Symptoms Syndrome and Mixed Anxiety-Depression would be placed in the Appendix of the DSM-5, as would Internet Use Disorder, and that Hebephilia was not going to get its own diagnostic category (although it would probably be listed as a subtype of Pedophilia). Regier and Kupfer attributed these changes to data from the field trials, but to Frances, this meant that they had finally, and wisely, concluded that there was indeed such a thing as bad publicity.

  “For the first time in its history,” he wrote, “DSM-5 has shown some . . . capacity to correct itself.” There were still many outstanding concerns (and just in case the APA had lost track, he listed twelve of them), but it seemed that “extensive criticism from experts . . . public outrage . . . negative press coverage,” as well as the data, had paid off. Frances wasted no time in using this as a rallying point for his troops, urging them to exploit “this opening chink in the previously impervious DSM-5 armor” and “take this last opportunity to be heard.”

  More bad news was soon filtering out from the field trials, though, including a rumor that Major Depressive Disorder and Generalized Anxiety Disorder, longtime staples in the psychiatric pantry, had achieved extremely low reliability scores, an indication that those little tweaks, coupled with the poor design of the study, had made a huge difference, and this strengthened Frances’s fears that the reliability numbers would be a “stain on psychiatry19.”

  “Looks like I wasted my time,” he wrote me. “Cassandra, not Cincinnatus.”

  Though it had relented on some of the diagnoses, the APA was showing no signs of changing its tactics. Indeed, it reprised one of its earliest moves. In mid-April, just a couple of weeks before the APA’s annual meeting, members of the task force and work groups received a communiqué from Kupfer and Regier, reminding them that the confidentiality agreement to which Spitzer had objected (but which they had signed) had new implications now that studies were appearing in the academic press using the proposals they had generated.

  “We encourage the wide dissemination20 of these important studies,” the memo read, but lest anyone get it in their heads to go Volkmar on the APA, Kupfer and Regier wanted to “remind you that the content and work products that have been generated as part of your ongoing activities . . . is [sic] considered to be the property of the APA.” This meant that “permission is required for its use,” which in turn required that any outside publisher obtain a license from the APA to use its intellectual property. As for people who might have unwittingly violated the copyright agreement already, “please let us know immediately so that we can work out any copyright issues before publication.”

  So it wasn’t just outsiders such as Suzy Chapman who needed to fear the copyright police. Nor was it only publication that might attract their notice. “We ask that you refrain from submitting any manuscripts . . . without first consulting the APA’s American Psychiatric Publishing,” Kupfer and Regier wrote. Simply circulating a paper was a no-no. “It is imperative that our publishing arm and attorney be made aware of any such instances,” and also of any papers already under consideration. Indeed, it seemed, any attempt to use the material published on the DSM-5 website in any venue not approved by the APA would be considered a violation of a copyright that the lawyers were gearing up to enforce vigorously.

  The APA had evidently figured out that money doesn’t just talk. It can also prevent talking.

  “What possible copyright excuse21 can there be?” Frances asked, when I told him about the memo.

  “It is just too nutty22,” he wrote a week later. The memo, the “crazy low reliabilities,” the fact that essential questions had not begun to be addressed, the way Kupfer and Regier were living inside an echo chamber and doing all they could to seal off the DSM from the outside world, the flagrant violation of the most basic academic and scientific freedoms—suddenly this wasn’t just Keystone Kops antics anymore.

  “I used to compare them to the Kremlin,” he wrote. “But they are really North Korea and that is a whole lot more dangerous. Expect chaos.�
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  Chapter 19

  A little bit of chaos did break out at the APA’s 2011 annual meeting in Philadelphia, in the form of a couple hundred Occupy the APA: Boycott Normal protesters, waving signs (DSM—MEDICALIZING THE SYMPTOMS OF LIFE) and chanting chants (“Hey, hey, APA! How many kids did you kill today?”). Kim Jong-un would probably have approved of the notices urging attendees to check the credentials of strangers approaching them with questions (because people “presenting themselves as journalists are not always who they say they are”) and to refer the unbadged to the Office of Communications and Public Affairs; the Supreme Leader might even have given an extra food ration to the security guard who broke up a family photo session in the main lobby, citing an APA edict banning unauthorized picture taking.

  But the Occupiers were corralled at one entrance to the sprawling convention center, and at least one unsanctioned (and officially persona non grata) journalist—that would be me—roamed the halls unmolested, asking questions of whomever he liked, and if the scene was a little more tense than in Honolulu, brotherly love reigned supreme over chaos and fascism most of the time. John Livesley’s highly public resignation from the personality disorders work group, announced just the week before, didn’t stop him from participating collegially in forums with the remaining members, and Andrew Skodol met the continuing, now nearly universal outcry against the personality disorders proposals with charm and equanimity. Michael First learned that despite his criticisms, the APA was probably going to renew his franchise on two DSM-related products—the Structured Clinical Interview for DSM Disorders and a handbook of differential diagnosis—and would (“after I sign my life away”) provide him with advance copies so he could get to work. Darrel Regier and David Kupfer were all smiles and handshakes as they greeted colleagues before their first presentation about the DSM, held on the first morning of the meeting.