The Book of Woe: The DSM and the Unmaking of Psychiatry (13 page)

T
he first time Jay Scully met with his DSM-5 troops, in the spring of 2008, he warned them about what they were getting themselves into. “
People are going to write dissertations
¹
on what you are doing. Reporters are going to be all over you. It’s probably going to be
DSM-5: The Musical
.”

The drama started almost immediately. The task force appointed Kenneth Zucker, a University of Toronto psychologist, to head up the sexual and gender identity disorders work group. Among the group’s members was another Toronto psychologist, Ray Blanchard. The appointment of two non-American nonpsychiatrists may have helped the diversity statistics, but it infuriated transgendered people, who had a direct stake in the outcome.

Zucker was known for research
²
purporting to show that the conviction that one had been born with the wrong sexual organs was acquired and thus, at least in some cases, malleable. He argued that some young children who expressed the desire to be the opposite sex should be discouraged from acting out their wishes, that girls who wanted to play with soldiers should be given dolls and that boys who wanted to wear skirts should be forced to dress like little men, lest they grow up into people with Gender Identity Disorder (GID). For his part, Blanchard had earned the wrath of the transgendered by suggesting that at least some of them did not suffer from having been born with the wrong sex organs, but rather that they derived erotic pleasure from fantasizing that they were the opposite sex,
a fetish Blanchard called
autogynephilia
³
.

To many transsexuals, Blanchard’s suggestion that their condition was nothing more than an abnormal sexual inclination—what the DSM calls a
paraphilia
—seemed to trivialize their suffering, and Zucker’s notion that transgender children could be put back on the right track smacked of the bad old days of sexual reorientation therapy for homosexuals. And they had a very practical concern: surgeons and endocrinologists would not provide sex-change procedures (and couldn’t get paid by insurers) without an official diagnosis of GID. If Blanchard’s and Zucker’s views carried the day, the work group might modify or remove a diagnosis that had been crucial to the gains transgender people had made.

Nearly as soon as the appointments were announced, the protests started rolling into APA headquarters. The National Gay and Lesbian Task Force, which had led the charge against the homosexuality diagnosis in 1973, issued a press release charging that Zucker and Blanchard were “
out of step
⁴
” and that the APA was not “keeping up with the times when it comes to serving the needs of transgender adults and gender-variant children.” If the irony of pleading with psychiatrists
not
to take away a diagnosis that explicitly pathologized an inborn condition occurred to them, they did not note it in the communiqué.

In late May, the APA sent out a statement pledging a “
thorough and balanced
⁵
” revision that would be “based on sound scientific data but also sensitive to the needs of clinicians and patients.” The effort would start with an assessment of “DSM-IV’s strengths and problems,” move to a “comprehensive review of scientific advancements,” and then, using “targeted research analyses and clinical expertise,” generate changes that would be subject to scrutiny from the larger professional community before being assembled into a final draft. There would even be a website where the public could eventually take a crack at the proposed revisions. The process would be orderly, deliberative, rational, nonarbitrary, and, it seemed, prolonged—too prolonged to be getting into particulars at this point.

It was a strange way to make a case for the scientific soundness of the DSM-5. After all, if the revision was going to be scientific, then why would the APA need to be sensitive to the needs of clinicians or patients or, for that matter, anyone else? A revision of cancer nosology based on “scientific advancements” like the increased ability to genotype tumors might conclude that certain patients actually belong in a different diagnostic category from the one they currently occupied. This might render them no longer eligible for treatment—a development that ought to make doctors sensitive to their patients as they deliver the bad news, but one that should not figure into whether or not the diagnosis is revised. As Joseph Biederman might have pointed out, if Galileo had been sensitive to the needs of the priests, we might still think that the sun moves around the earth.

The authors of the APA statement seemed to grasp this problem. After reassuring all the “stakeholders” that they would be listened to, they ended by urging people to recognize that “
the DSM is a diagnostic manual
⁶
and does not provide treatment recommendations or guidelines.” Those complaints had evidently gone to the wrong department. Not that such a department existed, at least not yet, but the APA did promise to set up a committee to look into the matter of GID treatment. In the meantime, perhaps because it was so proud of itself for listening to complaints that were, by its lights, irrelevant, the APA didn’t seem to notice that, as it had when it came to the “paradigm shift,” it was signaling that it would take whatever position was expedient, even if it ended up both asserting and undermining its scientific authority in the same one-page statement.

Scully had barely put out the GID fire when the
Psychiatric News
ran Spitzer’s letter complaining about the gag order. He teamed up with Regier, Kupfer, and Nada Stotland, then the APA president, to fashion
an immediate rejoinder
⁷
. Spitzer, they wrote, had misunderstood the intent of the confidentiality agreement. The organization was only trying to protect work group members from any “fear of recrimination” that might pressure them into “premature conclusions and misconceptions,” which might “damage the viability of DSM-V.” They did not spell out exactly who might seek recrimination, or what form it would take, or why, if the process was scientific, any of that should matter. They didn’t explain how sheltering their experts from outside views would help them be sensitive to the concerns of the rest of the world or protect the rest of the world from experts like Joseph Biederman. Neither did they elaborate on the claim that controversy could be harmful, let alone on what it meant to “damage the viability” of the DSM.

But the APA leaders didn’t really think they needed to answer such questions. In fact, in their view, it was Spitzer who had some explaining to do. He had failed to acknowledge the long public record, dating back to the
Research Agenda
, and including fourteen books and more than eighty peer-reviewed papers, all of which were in the public domain (even if they had been authored mostly by the same experts who were now being protected from controversy). He had given short shrift to the fact that the APA had “invested a great deal of effort to develop a process allowing appropriate communication while protecting the integrity and value of the DSM-V.” And he had misrepresented the agreement by failing to note a parenthetical clause allowing members to divulge material “as necessary to fulfill the obligations of [his or her] appointment.” A member who isn’t quite sure if he or she would be in violation, they added, “can simply ask.” People evidently could say whatever they liked, as long as they got permission.

Two years later, in fall 2010, Scully tried to be philosophical about this drama—“I suppose that’s the nature of the scientific process; scientists argue with each other”—but he was leaning forward, bouncing his arms on his knees, like he was having a little trouble staying in his seat. He is a big man, a blue-eyed blond with fair skin that flushes when he’s mad, which he was now that I had brought up this subject. He was evidently still smarting from the attack, which he thought was “pretty personal” and totally misplaced. In fact, Scully said, anyone was free to say anything. He didn’t mention the part about getting permission.

Neither did Darrel Regier. In our interview the next day, I told him about a work group member, a psychiatrist who would talk to me only anonymously and who had declined to ask permission—for fear, he said, of “reprisal.”
Regier wanted to know
⁸
who the doctor was.

I described a conversation I’d had recently with a psychiatrist named Sid Zisook. Thinking he was a task force member, I had asked Zisook if he had reservations about letting me interview him. “
I’m not on the task force
⁹
,” he told me. “And if I were, I wouldn’t be talking to you.”

“Sid said this?” Regier asked. He looked wounded.

David Kupfer had joined us by phone from his office in Pittsburgh, so I couldn’t see his reaction. But there was hurt in his voice as he explained that he had “encouraged everybody to talk”—so much so, he said, that colleagues in other specialties were saying, “My God! Nothing like this has ever happened in internal medicine or pediatrics. You guys are pretty brave to put all that stuff out there.”

Before I could ask Kupfer if he was calling Zisook a coward, Regier spoke up. “I’m putting myself in Sid’s shoes,” he said. “I think the secrecy stuff was so well sold by some of our critics that even some of our friends started to believe it.”

And it’s not only the critics who had victimized the APA. It was also their own people, although not the psychiatrists. “Unfortunately, the lawyers . . . It’s a misnamed thing,” Scully said. All the lawyers were interested in was “protecting the integrity and value of the DSM-V.” The gag order was actually an “intellectual property agreement” designed to prevent anyone from using “material that belongs to the APA” for their own personal enrichment. And this wasn’t just any intellectual property, but one that “we’re putting $25 million into creating” and whose value could be diluted if some unscrupulous psychiatrist decided to publish his own DSM, or maybe write an embarrassing tell-all musical. This was what the lawyers had failed to make clear, what Spitzer had misunderstood, and what made the wound he inflicted all the more grievous: that the APA, like any corporation, had to protect its brand against pirates and bad publicity.

•   •   •

“
We have enemies
¹⁰
,” APA president Nada Stotland told her troops as they assembled for their 162nd annual meeting in May 2009. Antipsychiatry was alive and well, and its troops would be sure “to use doubts about the DSM to undermine our profession.” It was as if only people out to get the APA would question its credibility.

Stotland didn’t say exactly whom she had in mind, although she did mention the Church of Scientology, whose most prominent member, Tom Cruise, had publicly scolded his ex, Brooke Shields, for taking Paxil and then told NBC’s Matt Lauer that “
psychiatry is a pseudoscience
¹¹
” and “there is no such thing as a chemical imbalance.” Stotland probably would have counted those pesky transsexuals among them as well. But it’s a safe bet that she wasn’t thinking of Allen Frances and Bob Spitzer. On the other hand, she gave the speech the night before Will Carpenter pulled Frances’s trigger.

Frances didn’t bother with warning shots. In July 2009, he fired off a full-on salvo from his BlackBerry—his sole link to the Internet, which he’d purchased a couple of years previously, and only after “
Michael First shamed me into it
¹²
” by telling him that if he didn’t have a link to the Internet, Frances’s grandchildren would come to regard him as he had regarded his Yiddish-speaking grandfather. It was the first time he’d used the device for anything other than e-mail.

The three-thousand-word missive ended up in the June 26 issue of the
Psychiatric Times
. Under the headline “A Warning Sign on the Road to DSM-V: Beware of Its Unintended Consequences,” Frances wrote that his successors had “displayed the most unhappy combination of soaring ambition and weak methodology.” Their attempt to effect a paradigm change was “absurdly premature.” They were heedless of the fact that because psychiatry was “stuck at its current descriptive level . . . until we make a fundamental leap in our understanding of what causes mental disorders . . . there is little to be gained and much to be lost in . . . changing the system.” They had compounded that error by populating the work groups with experts from “the atypical setting of university psychiatry,” whose clinical experience was limited to “highly select patients treated in a research context” and who tended to be far more worried about “missed cases” than about diagnosing people with illnesses who weren’t really sick. The task force had given them precious little guidance, leaving the experts free to pursue their pet projects, like Psychosis Risk Syndrome. And they were preparing to field-test the new diagnoses, using them with real patients in the controlled settings of academic medical centers, without having first subjected the new criteria to outside scrutiny and then refined them, as Frances had in the DSM-IV. Conducting a field trial on what amounted to a rough draft of the new DSM would be “flying blind.” It couldn’t possibly tell psychiatrists anything about how the final draft would perform in the real world.

This was Frances’s biggest complaint: that the DSM-5 leaders seemed heedless of the way that the new revision threatened to put psychiatry even more into the “business of manufacturing mental disorders” and that those lowered thresholds and new diagnoses and revamped criteria would touch off diagnostic epidemics. “The result would be a wholesale imperial medicalization of normality,” he wrote, “a bonanza for the pharmaceutical industry but at a huge cost to the new patients caught in the excessively wide DSM-V net.” Operating in an echo chamber of experts, secretive and sealed off from outside views by its “ludicrous confidentiality agreements,” the task force couldn’t even see how far off course it had veered. Neither could it grasp how far behind schedule it already was, how time pressure would “soon lead to an unconsidered rush of last-minute decisions.” Barring a “midterm course correction”—which Frances thought required the appointment of an external review committee with no ties to the DSM—the DSM-5 would be “an embarrassment and a burden to the field,” creating problems that would “haunt psychiatry for many years to come.”