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

by Gary Greenberg

  I was longing for the pre-DSM-III days when I could have read this paragraph:

  This behavior pattern25 is characterized by ineffectual responses to emotional, social, intellectual, and physical demands. While the patient seems neither physically nor mentally deficient, he does manifest inadaptability, ineptness, poor judgment, social instability, and lack of physical and emotional stamina.

  I could have then written down this diagnosis, perhaps cruel but to the point: inadequate personality. Not that ineffectual and deficient are any easier to define, but at least the DSM-II wasn’t asking me to rate them on a scale of zero to four. At least it didn’t first claim that they were real enough to measure and then insist that they weren’t real at all.

  “I think we’ll stop here,” I said.

  “How did I come out?” Claudia asked.

  It was a totally reasonable question. She’d just invested more than two hours in this procedure. After this kind of grilling, anyone would wonder. And Claudia might have been hoping the same thing I was—that somehow this process would provide some kind of clarity about her.

  “Oh, I won’t know right away.” It was only a partial lie. Overwhelmed by the data, I had already forgotten which diagnoses I’d reached, and now that I’d clicked Send, I couldn’t go back and look. I wouldn’t know until I opened the files into which I’d been downloading the forms as we went.

  I wanted to ask her how this interview had been for her. I wanted to apologize to her for the inadequacy, the pointlessness, the sheer idiocy of the exercise, for the two hours I’d spent with her during which we had not only failed to get closer to each other or to an understanding of her troubles but actually, I worried, moved further away. It was nearly nine at night. I’d been in my office since eight that morning. So I thanked her for helping me out and scheduled her next appointment and said good night.

  I never saw Claudia again. I don’t know why. She just didn’t show for her next appointment and never returned my phone calls. Maybe she decided therapy wasn’t for her, or I wasn’t the therapist she should see. Maybe she ran out of money. But I’ll always think it had something to do with those two hours of flailing about in the fields of the DSM, that my failure to take the measure of her suffering had turned into her failure to measure up, that the futility of the field trial had made the whole therapeutic enterprise seem futile, that when the DSM’s desiccated vocabulary, at least in the hands of a nonbeliever, proved no match for the immensity of her suffering, Claudia had lost that most precious therapeutic commodity: confidence.

  • • •

  Just before Christmas, the APA sent out Inside DSM-5 Field Trials: Your Voice in Action!, a newsletter for us participants. “The journey into the future26 begins with a few small steps,” it proclaimed. But apparently not enough of us were taking them. “We understand that these steps can be time consuming, or even a bit confusing,” the article continued, “but we believe that the value of training and participating extends far beyond that of the field trials.” It didn’t say exactly what other benefit lay in store for us, but it did reassure us that the APA staff was standing by to help us achieve it.

  Farther down the page was the reason the APA had had to resort to badgering us. Of the 5,000 clinicians who had signed up, only 1,000 had so far started training, only 195 had completed the training, and only 70 had enrolled any patients. The newsletter writers did their best to sound upbeat—“in fact, nearly 150 patients have joined the study,” they wrote, leaving out the fact that the goal was 10,000—but anyone with a calendar could see the problem. More than a year after the sign-ups began, three months after Kupfer and Regier had sent out their plea for cooperation, and only two months before the data had to be in, the RCP trials had scarcely begun.

  That look at the calendar revealed an even more disturbing problem. The APA had originally planned two sets of field trials—the first to reveal the bugs, the second to make sure they’d been shaken out. The second phase was originally scheduled to end in February 2012. But even though the academic center field trials were progressing better than the clinician version—and by some accounts were largely finished, although no one would say—their findings still weren’t in, and no release date had been given. Neither had the APA announced the inevitable result: that the second phase would have to be canceled if the DSM-5 was to be published on time. That news had just appeared when a new timeline was posted on the website.

  Something else had shown up quietly on the website. The banner at the bottom of every page, which, as recently as July 2011, had proclaimed that the APA represented “38,000 physician leaders in mental health,” had been changed. The organization now represented only 36,000 doctors. And at the end of 2011, the treasurer delivered grim news27 to the remaining members: Annual income from the drug industry, once $18 million, was now only $4 million. Meeting revenues were off by $1.6 million. Ad revenues had sunk to $6 million, off their high of $10 million. Membership dues were down by $500,000. Thanks to cuts in expenditures, the APA was still running a surplus of about $2.85 million, but, the treasurer reported, “this is due to a [$5.6 million] surplus for American Psychiatric Press,” whose most profitable property was, as it had long been, the DSM. Without the DSM, in other words, the APA would have lost nearly $3 million.

  These numbers only strengthened the concern among critics like Frances that in its haste to freshen its cash cow, the APA was trampling over science. That, of course, was impossible to prove, but one thing was clear: toward the end of 2011, the APA was patrolling its intellectual property lines more vigilantly than ever, as a woman in England found out the hard way. For a couple of years, Suzy Chapman, a patient advocate, had been running a blog called Dsm5watch28. Chapman, a caregiver for a patient with chronic fatigue syndrome, was interested primarily in developments related to CFS, but her blog covered the entire revision process (as well as that of the International Classification of Diseases). Unlike the APA, which removed old criteria and timelines as it changed them, Chapman had preserved excerpts from earlier iterations of the DSM-5, and her website, which also collected news and opinion pieces about DSM, had thus become one of the largest and most reliable repositories of revision-related information on the Web.

  This may or may not be why, on December 22, she received a letter from Cecilia Stoute, the licensing and permissions manager of the American Psychiatric Press. It wasn’t a Christmas card.

  “It has come to our attention29,” Stoute wrote, “that the website http://dsm5watch.wordpress.com/ is infringing upon the American Psychiatric Association’s trademark DSM-5 (serial number 85161695) and is in violation of federal law by using it as a domain name.” Chapman’s “unauthorized actions,” Stoute continued, “may subject you to contributory infringement liability including increased damages for willful infringement.” To avoid that outcome, Chapman must “immediately cease and desist any and all use of the DSM-5 mark” and remove it from her domain name.

  “I thought it was a hoax30,” Chapman told me—an impression reinforced by a second letter she received, this one instructing her to remove the DSM-5 mark from a second website, as well as a Facebook page and a Twitter account. But those domains didn’t belong to her and never had. They were run by the psychologists who originated the petition. Those sites remained online despite the APA’s copyright, as did Dsm5.com, Newdsm5.com, Dsm-5diagnosis.com, Dsm5band.com (INSANITY NEVER SOUNDED SO GOOD!), and even Dsm5sucks.com.

  But no matter how outlandish the claim or how selective the action or how shaky the APA’s legal grounds, and no matter how much the move reeked of intimidation, Chapman felt she had no choice but to comply. “I could not finance a legal wrangle31 with the APA,” she told me, adding that she feared that her blog’s host would remove her site at the first sign of trouble, wiping out years of work with a single keystroke. So she changed her blog name to Dxrevisionwatch. As she feared, the new URL caused her readership to plummet to nearly zero—but
not for long. On January 3, Frances wrote about Chapman’s travails in his Psychology Today blog. Within a couple of weeks, traffic to her website was double its pre-putsch levels.

  That’s probably not what the APA had in mind.

  The incident left Chapman wondering about the APA. “What kind of organization slaps heavy legal threats on a member of the public just two days before Christmas, when it would be hard to get legal advice? What kind of organization is so lax that it issues cease-and-desist letters without having first established who owns the contested domains?”

  The answer was obvious: an organization that was both intelligently conspiratorial and dopily incompetent. Or, as they might say in Hollywood, The Gang That Couldn’t Shoot Straight meets The Parallax View.

  Chapter 18

  Speaking of conspiracies, Darrel Regier had a theory about Allen Frances’s complaint that the DSM-5 would extend the reach of psychiatry into everyday life. “The idea of medicalizing normality1,” he told a reporter in late January, “comes from a perspective that there are no psychiatric disorders, and you need to avoid stigmatizing people by giving them one.”

  It’s possible that Regier had joined the crowd who believed that the former most powerful psychiatrist in America had become a devout antipsychiatrist. Or maybe he had just misunderstood what Frances really meant. But it’s also possible that Regier was getting desperate.

  You couldn’t exactly blame him. The middle of January 2012 was the start of a terrible month-long period for him, the APA, and the DSM-5.

  The first storm blew in from offshore on January 19, when Fred Volkmar gave a talk to the Icelandic Medical Association. Volkmar and a couple of his Yale colleagues had dusted off the data from the DSM-IV field trials for childhood disorders and then applied the proposed DSM-5 criteria to the same subjects. They determined that only 44 percent of the subjects who had received a diagnosis in the original study would have made it onto the proposed autism spectrum. And only twelve of the forty-eight original Asperger’s patients—the same cases that had unexpectedly strengthened the case for including Asperger’s in the DSM-IV—would have qualified under the new regime.

  Volkmar had presented much of this data before, at a November meeting of the American Academy of Child and Adolescent Psychiatry in Toronto, but he wasn’t in any hurry to have it known by the general public. “I wasn’t exactly hiding it2,” he told me. “But I am (or have been) friends with a number of people on the committee, and I knew that this would cause bad feeling.” And, he added, “I knew that the powers that be would take no hostages on this one.” So he didn’t approach reporters with the incendiary news that three-quarters of Asperger’s patients might soon be losing their diagnoses (or wouldn’t be getting them in the first place).

  But then Benedict Carey, the New York Times reporter on the psychiatry beat, happened to call Volkmar on the eve of his trip to Iceland, fishing for news on the autism front. Volkmar still didn’t draw attention to the data reanalysis, but he did send Carey the slides from his upcoming presentation, and as soon as Carey saw the slide listing its results, he grasped their significance. His front-page story, “New Definition of Autism Will Exclude Many,” appeared on January 19 and quickly rocketed around the world via newspaper, TV, and blog. The Times followed up the next day with a story about the possible impact of a reduction in diagnoses on children and their families.

  When he heard the news, GRASP’s Michael Carley was already rethinking his position in favor of the DSM-5 proposal—and not only because of Volkmar’s research. He’d gotten hold of another soon-to-be-published article, this one from a group at Louisiana State University, that had concluded the new criteria would exclude 37 percent of the patients, most of them at the high-functioning end of the spectrum. He now found himself siding with his son.

  “It was one thing to make a change3 that relabeled people,” Carley told me, “and another to make a change that they knew would exclude so many.”

  The promises the APA had issued since announcing the proposals now seemed like mere “damage control4,” Carley told his members. “We think those who reassuringly tell us, ‘No one will be left behind,’ really mean, ‘No one will be left behind who deserves a diagnosis under the DSM-5 criteria.’” He now urged GRASPers to take action: by signing a petition opposing the changes and by flooding the APA’s phone lines with complaints. “Yes, they are telling you to e-mail instead,” he acknowledged. “But we ask that you please instead be the articulate, impassioned, and peaceful nuisance that is needed in this debate, and not adhere to their instructions.”

  The APA scrambled its experts, but they couldn’t seem to agree on their talking points. “We have to make sure5 not everybody who is a little odd gets a diagnosis of autism or Asperger’s disorder,” David Kupfer told The New York Times. Cathy Lord echoed this concern, telling the same reporter that her work group wanted to make sure “that autism was not used as a ‘fallback diagnosis.’” But she also reassured readers that “the committee’s own data shows very few who currently have a diagnosis would be dropped.” She didn’t say why, if the problem was so insignificant, the committee had gone to so much trouble to fix it.

  Another work group member, Bryan King, tried a different approach. The question of overdiagnosis had never even been relevant to the proceedings, he claimed. “There has never been an agenda6 for us to restrict or limit the numbers of people diagnosed with autism,” he told Medscape Medical News, an industry outlet. “We’ve only wanted to get the criteria right,” he continued, as if a reduction of diagnoses was only a side effect of a drastic reduction in the number of possible symptom combinations that could result in a diagnosis. And even if a few people lost their official labels, they had nothing to fear: if one label disappears, he said, “then a different label will appear in its place. There will always be a way to capture the need for treatment.”

  King didn’t say exactly what label was waiting in the wings for those fallback-diagnosed, a-little-odd kids who may or may not exist. Neither, apparently, did he realize he was giving up the game, acknowledging that capturing rather than establishing the need for treatment had become the purpose of diagnosis, nor did he consider how antipsychiatrists would treat that comment. After all, if every complaint that brings a person to a doctor demands a diagnosis, the next thing you know you’ll have a wholesale imperial medicalization of normality.

  King was clear on one thing: Volkmar had unduly scared the bejesus out of people, at least to judge by the calls to King’s clinic, where the phones, he said, had been “ringing off the hook.”

  At APA headquarters, despite Carley’s efforts, it wasn’t the phones that were taking the brunt. It was Regier’s e-mail in-box, which, he told a reporter, had been deluged with “10,000 plus e-mails7” in the wake of the New York Times articles. Regier added that he would have liked to respond to Volkmar’s numbers with his own, but he “was not willing to give detailed data . . . until [they] are subjected to peer review and are published.” He didn’t add “like some people I know,” but the implication was clear: Volkmar wasn’t playing fair, and Regier was once again the victim of his own scrupulousness. And in case he hadn’t sufficiently questioned Volkmar’s integrity, Regier threw another elbow, telling a reporter that Volkmar had a new book coming out about Asperger’s—a book whose market might well disappear with the diagnosis.

  “I hope this is not what he said,” Volkmar responded, when the reporter passed along the comment.

  “There is certainly a better way to phrase this,” Regier wrote back (after complaining that he hadn’t had much luck in “changing how journalists present a story”). “The point I was making is that Fred has a particular interest in Asperger’s,” he explained. That, evidently, was the best phrasing he could find.

  • • •

  Only five days after the autism story broke, a Carey-penned DSM piece8 once again made the front page of The New York Times. Thi
s time around, the hook was a World Psychiatry article by Jerry Wakefield and Michael First9 questioning the evidence on which the proposal to remove the bereavement exclusion was based. Their argument was a detailed refutation of the research that Sid Zisook and his colleagues had mustered in favor of their notion that there wasn’t enough difference between bereavement-related depression and all other depression to warrant the exclusion.

  “An estimated 8 to 10 million people lose a loved one every year, and something like a third to a half of them suffer depressive symptoms for up to a month afterward,” Wakefield told Carey. “This would pathologize them for behavior previously thought to be normal.” The article went on to detail the other DSM-5 proposals that threatened to raise the prevalence of mental disorders—Attenuated Psychosis Symptoms Syndrome, Binge Eating Disorder, Premenstrual Dysphoric Disorder. Carey quoted a psychiatrist who forecast a wider use of drugs as a result and let Frances issue yet another warning about the medicalizing of normality. Some experts were worried about the “corrosive effect” all this “politicking” might have on the revision process, Carey wrote, but others—including Steve Hyman and his successors at NIMH—thought it was mostly beside the point, which was why they were no longer interested in the DSM. “Nature does not respect psychiatric categories,” Carey concluded, and added that while there might someday be a nosology that nature would respect, “until then, there . . . will be the diagnostic manual.”

  Carey gave Jay Scully an opportunity to defend the APA’s position. Rather than address the questions raised by the article, however, Scully decided to blame the messengers. “We’ve got electronic media around the clock, and we’ve made drafts of the proposed changes public online, for one thing,” he told Carey. “So anybody and everybody can comment on them, at any time, without any editors.” It was a curious tactic, and one that didn’t shed much light on the subject of diagnostic inflation, but then again, Scully couldn’t respond to that worry with reassuring statistics about prevalence from the field trials—and not because, as Regier had implied, the detailed data awaited analysis or because professional decorum demanded reticence, but because there was no such data, and there would never be any.