The Book of Woe: The DSM and the Unmaking of Psychiatry (17 page)

The oversight committee wasn’t only concerned with how far behind schedule the effort had already fallen, now that summer had passed and the promised field trials had not materialized. “We were also looking at the timetable they proposed and everything was tight,” Robinowitz said. So the committee recommended that the publication be delayed one year, to May 2013. And, she allowed in fall 2010, the committee might recommend further postponements, depending on what happened in the field trials that Regier insisted would be the proving grounds for the changes. “It’s not a contract that we have to execute or there will never be another DSM. I don’t think anyone is going to say we’ve got to go forward if we get crappy results.”

In early December, Frances told his growing
Psychiatric Times
following that his “anonymous sources” in the organization were telling him to expect an important announcement soon. Sure enough, a week later
the APA issued a press release
¹⁴
. The “anticipated” publication date was now May 2013. Schatzberg explained that “extending the timeline will allow more time for public review, field trials and revisions. The APA is committed,” he went on, “to developing a manual that is based on the best science available and useful to clinicians and researchers.”

The press release didn’t acknowledge that the APA had taken precisely the course that Frances had recommended. And when I put the question to Regier, he claimed that the delay was occasioned only by the “
long vetting process
¹⁵
and startup time of the work groups,” which in turn resulted from the APA’s requirement that revisers divest themselves of drug company money. Once again, the APA was claiming to be the victim—not of Frances, but of its own goodness. Regier also insisted that Frances’s complaints had “added no content to the discussion,” and indeed had “only served to heighten interest” in the revision. Frances, in other words, was
helping
the APA.

Even so, Frances was flirting with danger. “His major critique,” Regier went on, was that “nothing has changed in the scientific world since his revision and hence no substantive revision is possible.” Not only that, he was also asserting “that his judgment on the pragmatic consequences of revisions should take precedence over any of the experts in a given diagnostic field.” He was, in other words, trumping up his personal grievance into a broadside against the institution he once served and in the bargain calling into question the credibility of the APA. The diagnosis was clear: Allen Frances, once America’s top psychiatrist, was letting his ego take him on a kamikaze mission directed at his own colleagues. Blinded by pride, he had become his own kind of antipsychiatrist and, even worse, a turncoat.

•   •   •

In January 2010, Frances took his show on the road. After a test run at Duke, he went to Columbia University’s medical school to present grand rounds—a medical school tradition in which an eminent doctor describes a case to students. Frances’s case was the ailing DSM. “
I’m going to be quite critical
¹⁶
,” he said at the outset of his forty-five-minute talk, but first he wanted to address his own “possible biases”—meaning, it turned out, the charges that the DSM-5 defenders had leveled at him. He was not inherently conservative or opposed to change, he assured the audience, which included numerous DSM-5 work group members (along with Michael First); his caution over the DSM revision was the exception. He wasn’t “trying to save my baby,” he told them. “The DSM-IV is not something I feel particularly proud of, and I don’t think it was much of a contribution to the world,” and as for the $10,000 in royalties that the APA had said was his real motive for agitating for a delay—“Well, it’s conceivable that that’s why I’m giving this talk,” he said, and shared a laugh with his fellow high earners over that paltry sum.

The talk was a concentrated version of the litany he’d been developing over six months of blogging, now for
Psychology Today
in addition to the
Psychiatric Times
. But it was one thing to thumb out a blog on his BlackBerry (or to give a talk on his own home turf) and another to tell an audience such as this one that the DSM-5 was very likely to be “crummy” and a “mess,” that the big question was whether or not it would also be dangerous, and that the revisers were so blind to their own faults that only public pressure could avert that disaster.

After the talk, and before he started the Q&A session, moderator Jeffrey Lieberman, the head of Columbia’s department of psychiatry and a member of Robinowitz’s oversight committee, tried to relieve the tension. “Allen,” he said, “I only wish you hadn’t held back, and told us what you
really
thought.”

Frances reached over and put his big hand on Lieberman’s white-coated shoulder. “I did hold back,” he said.

David Shaffer, a member of the childhood disorders work group, was the first audience member to speak. He certainly didn’t hold back.

“Congratulations, Allen,” he said. “It was a daring exercise to list so many strong complaints without having seen what’s about to be posted.” (The APA had not yet put the promised draft of the DSM on its website.) Even worse, according to Shaffer, Frances had compounded his ignorance by setting up a straw man. “You represented a set of overambitious and vain and silly goals that actually were never stated as such,” he said.

As Frances prepared to respond, Shaffer reclaimed the microphone. “One personal thing,” he said. He had worked on both DSM-III and DSM-IV, and agreed with Frances that the new revision’s “style of management has been completely different.” But far from flirting with disaster, the “bottom-up process [had] led to some of the most stimulating debate as I can remember in my career.” It was a double rebuke to Frances: he had not only jumped the gun with his criticisms; he had also been wrong to conduct his revision in an autocratic manner, one that had evidently bored Shaffer. It was as if the DSM-IV’s troubles were the result of Frances’s conservatism. Having been freed from these restraints, it seemed, the DSM-5’s experts couldn’t help but come up with a better book, or at least have a more stimulating time in the process.

•   •   •

Frances didn’t respond directly to Shaffer’s complaints, except to agree that “the proof will be in the pudding.” And a few weeks later, on February 10, the pudding was served.
The APA posted a full draft
¹⁷
of the proposed revisions on its website. The draft maintained the DSM-IV’s structure, organizing mental disorders into sixteen chapters (“Mood Disorders,” “Anxiety Disorders,” “Schizophrenia and Other Psychotic Disorders,” etc.), but it also featured changes to virtually every part of the book, from the definition of mental disorders at the beginning to the “Listing of Other Conditions” at the end. Doctors would be able to diagnose and get paid to treat Psychosis Risk Syndrome and other disorders, such as Minor Neurocognitive Disorder, that were more harbingers of future trouble than present illnesses. Kids labeled bipolar by the Biederman protocol would now have Temper Dysregulation Disorder, and kids diagnosed with Asperger’s Disorder would suddenly come down with a case of Autistic Spectrum Disorder, if they were still sick at all. Pathological gambling would no longer be an Impulse Control Disorder, but instead would become a behavioral addiction, joining Alcohol Use Disorder and Cannabis Use Disorder in the Substance-Related Disorders section, which would be renamed “Addiction and Related Disorders.” Pathological gambling would be the only behavioral addiction for now; Internet Addiction had not made the cut, and Money Addiction apparently hadn’t been considered. But you would no longer have to be addicted to or dependent on a drug to warrant a diagnosis; any kind of troublesome use was enough. Troublesome sex could also be diagnosed; people who experienced “six or more months of recurrent and intense sexual fantasies, sexual urges, and sexual behavior,” in which they spent “a great deal of time . . . planning for and engaging in sexual behavior,” would have Hypersexual Disorder. If their attraction was to young adolescents, they would be suffering from Pedohebephilia, and if they got off on forcing people to have sex, they would qualify for Paraphilic Coercive Disorder. Adults would get criteria for their own version of Attention Deficit/Hyperactivity Disorder, and children would need fewer symptoms to qualify for ADHD. The recently bereaved would lose their exemption from the depression diagnosis and would be mentally ill after two weeks of grieving. Where there had once been ten personality disorders, there would now be only five. People who went on Ben and Jerry’s sprees would now have Binge Eating Disorder, and people who were worried and sad but didn’t meet criteria for either Generalized Anxiety Disorder or Major Depressive Disorder would now qualify for Mixed Anxiety-Depression Disorder. Every patient would get rated for cross-cutting
symptoms, and every diagnosis would come with a severity rating, although it wasn’t exactly clear how this would be done because these dimensional measures, as Regier had predicted, were still under construction.

Everything was indeed on the table.

The APA would allow the public, kvetchers and scholars alike, to weigh in on the proposals for two months (although, as its website cautioned, while “all input we receive will be reviewed . . . we can not guarantee that your suggestions will be incorporated into any revisions.” But it didn’t have to wait long to hear from some familiar voices or work hard to figure out where they stood.

“
Anything you put in that book
¹⁸
, any little change you make, has huge implications,” Michael First told
The New York Times
on the day of the release. Those risk syndromes, for instance, carried their own risk, at least the one about psychosis did: “that many unusual, semi-deviant, creative kids could . . . carry this label for the rest of their lives.”

And the very next day, Allen Frances listed for
Psychiatric Times
readers “
The 19 Worst Suggestions for DSM5
¹⁹
.” His four-thousand-word evisceration of the draft argued that with its lowered thresholds for old diagnoses and its brand-new, untested diagnoses, the DSM-5 would be like honey to the drug company flies and like gold to lawyers. Psychosis Risk Syndrome would be a “catastrophe,” Mixed Anxiety-Depression would become an “epidemic,” Temper Dysregulation Disorder was a “nonstarter,” Paraphilic Coercive Disorder would be a boon to prosecutors looking to commit sex offenders indefinitely to mental hospitals and to defense lawyers seeking to exculpate their rapist clients, behavioral addictions would provide “a ready excuse for off-loading personal responsibility,” and Pedohebephilia would “medicalize criminal behavior.” Dimensional assessments, cross-cutting and diagnosis-specific, were “ad hoc, unworkably complex, vague, untested, and premature,” not to mention “bewilderingly inconsistent . . . extremely complicated and totally impractical.” The proposals confirmed what Frances had feared: that “the DSM5 has been and remains in serious trouble.”

“How can such smart and scrupulous people make so many bad suggestions?” Frances wondered toward the end of his diatribe. His answer was that because experts, no matter how well intentioned, would always expand their reach, it was up to their leaders to recognize and resist this “diagnostic imperialism,” and that this seemed the last thing that the “DSM5 leadership,” defensive and secretive, and still committed to their bottom-up approach, were likely to do. The leaders—he pointedly did not mention Kupfer and Regier by name—had failed to recognize this duty, so they no longer deserved the benefit of the doubt.

A
llen Frances had spoken his piece but no one on the inside had listened, so he redoubled his attack, turning to the rank-and-file psychiatrists who, he assumed, were the people reading his blogs. “The rest,” Frances told them, “is up to you.” In the dozen missives he fired off to the
Psychiatric Times
between mid-February and the end of May—with acerbic titles like “Biting Off More Than It Can Chew,” “Not Ready for Prime Time,” and “Psychiatric Diagnosis Gone Wild”—he exhorted his readers to “Just Say No,” as he put it in his blog about the sexual disorders proposals. He reminded them of the public commentary period. In April he sent
another letter to the trustees
¹
that added some new charges—that the field trials (whose design had just been posted) were fundamentally flawed, that the project still lacked oversight, that despite the one-year delay, the revision was hopelessly behind schedule—and urged the trustees to use their “power and responsibility” lest “things drift further over the cliff.” Warning that “this might be a last chance tipping point to save DSM-5,” he made the letter public and begged psychiatrists to “influence your leaders to take the decisive actions to solve them.”

Frances insists he is ill suited, by temperament and experience, to participate in a rebellion, let alone to lead one. “
I was of age in the ’60s
²
and never protested or went to D.C. to hear Martin Luther King. I was at Jones Beach having a great time,” he once told me. He was responding to an e-mail in which I suggested that there was something poignant and quixotic about his battle with the APA. “I am not a quester for truth or a righter of wrongs or a follower of impossible dreams,” he wrote. “I am Panza.” He implored me to get this right. “[I] would prefer to be portrayed accurately as the lowly brute I am than to be ennobled into some version of David and Goliath.”

“I am not battling the DSM-5 leadership in some romantic crusade,” he went on. “There was no one else in a position to take on DSM-5 so I was stuck . . . by an unavoidable duty. I started trying to warn them and now I am trying to shame them. Nothing noble or quixotic or poignant.”

On the other hand, Allen Frances was once the most powerful psychiatrist in America. You don’t need a slingshot to smack your fellow Goliaths in the forehead, and you don’t get to be one of them without putting some skin in the game and figuring out how to be forceful. For Frances, or so he says, this came down to one simple tactic. “
I never yell
³
,” he insisted. “I tease.”

He recalled a kerfuffle in the late days of the DSM-IV campaign over Self-Defeating Personality Disorder (SDPD)—which, in what he calls a “
nice irony
⁴
,” was the remnant of his own “dumb idea” for Masochistic Personality Disorder. SDPD had been placed in the Appendix of the DSM-III-R, where it presumably awaited “further study,” but in the meantime, it had become a magnet for the kind of controversy Frances disliked—not only among psychiatrists, but in the rest of the world, where feminists worried that the diagnosis would lead to laying the blame for domestic violence and sexual assault on the supposed pathology of the victims.

Frances wanted to kick SDPD out of the DSM entirely, but psychoanalytically minded psychiatrists opposed him—largely because, with its insistence that people might be unconsciously motivated to behave against their own best interests, the diagnosis was one of the last vestiges of psychoanalysis in the DSM. They started a last-minute rearguard action. To help quell it, the head of the APA, Melvin Sabshin, suggested that Frances and Herbert Peyser, an advocate for the diagnosis, stage a series of debates at a meeting of the APA Assembly, the representative body within the organization.

“
This was the stupidest idea in the world
⁵
,” Frances said. “You don’t debate things like this.” Not only that, but “Herb was going against the rules. He stubbornly made [SDPD] a political issue.” But Sabshin was the boss and Frances found himself doing exactly what the rules he’d made with Pincus had been designed to prevent: bloviating in front of a room full of pontificators.

“Herb and I would debate for a half hour for each of these groups,” he told me. “At the end, Herb and I would come out and I’d give him a big kiss on the cheek and a pinch on both cheeks, and I would say, ‘Herb, you’re absolutely brilliant, it’s almost impossible to debate against you. If we were candidates, you’d kill me, because I don’t know what I’m doing and you’re brilliant.’ And then I’d say, ‘But I’m sorry you’re not going to win, because it’s just a stupid idea.’”

Bob Spitzer served as Peyser’s cornerman in the debates. “
After the third or fourth
⁶
,” Peyser told me, “Spitzer says, ‘Herb, the best argument in favor of SDPD is if we keep arguing with Al about it.’” Even if there was a group of people who met the criteria for the diagnosis, who could be reliably identified, who were distinct from other groups of troubled people, and who suffered impairment as a result—even, that is, if the diagnosis qualified in all ways as a mental disorder—“it was clear from the beginning,” Peyser told me, “Al was going to win.”

And indeed he did, garnering 60 percent of the assembly’s votes for his proposal to delete the disorder, without ever yelling.

•   •   •

Teasing, perhaps more than other kinds of joking, only barely conceals the hostility and aggression and the wish to inflict shame that
Freud once said
⁷
was the function of jokes. It is, at least psychologically speaking, a lowly and brute tactic, and, compared with launching a rock at a Goliath, cowardly. But it can work, so long as the audience, or the butt of the joke, accepts the rules of engagement, as Jeffrey Lieberman did when he laughed—a little uncomfortably, perhaps—with the rest of the grand-rounds crowd when Frances laid his hand on his shoulder and joked with him at Columbia. And Peyser remembers the debates as “delicious,” even if his cheeks got pinched and he got trounced.

But at least one man doesn’t seem to get Frances’s jokes: David Shaffer, the Columbia child psychiatrist who shrouded his hostility toward Frances in gentility rather than humor when he congratulated him for spouting off on proposals he hadn’t seen. Shaffer thinks that Frances’s “
orderly and democratic process
⁸
” did tame Spitzer’s rough-and-tumble—“I liken it to a tobacco auction,” he said—but the needling, even nearly twenty years later, still rankled.

“The worst thing about Allen Frances was that he would always find some reason to insult Bob,” Shaffer told me. “If Bob said something, he would say, ‘Well, that’s a typical Spitzerism,’ or he would find some other ad hominem thing to say. It was childish and embarrassing.”

“
David probably misinterpreted
⁹
what passes as New York Jewish humor for disrespect,” Frances said.

And, indeed, Shaffer said he never quite understood the “New York kind of logic” that both Spitzer and Frances seemed to favor. That’s not hard to believe when you lay eyes on him. He’s as different as can be from those two swarthy, wisecracking New Yorkers—a pale wisp of a man who talks with a soft British lilt and demurely turns his head to the side, looking out his office window toward the Hudson River and the George Washington Bridge when he’s reaching for his next words. It’s a little hard to imagine a man so mild being married, as he was for fifteen years, to
Vogue
editor Anna Wintour; he’s not even particularly well dressed. But he is unabashedly pleased to have a different leadership style in place as he works on DSM-5, and he’s pretty annoyed with Frances—not only for his Columbia talk (“a real blot on his landscape”), but also for hammering away at Shaffer’s pet proposal for the revision, Temper Dysregulation Disorder (TDD).

Shaffer thinks he was in part responsible for Frances’s attacks. “The TDD was my fault,” he said.

He’s not talking about the new diagnosis. He still believes that was a good idea, and the best way to solve an embarrassing problem. “Biederman was a crook,” Shaffer told me. “He borrowed a disease and applied it in a chaotic fashion. He came up with ridiculous data that none of us believed. It brought child psychiatry into disrepute and was a terrible burden on the families of the children who got that label.”

It would not be enough simply to put an end to the childhood bipolar epidemic by, say, changing the DSM to restrict the diagnosis by age or introducing chronic irritability as an
exclusion criterion
—a condition whose presence would contraindicate the diagnosis. “These kids are terribly ill,” Shaffer said, and if Biederman “hijacked the diagnosis,” he did it in part to provide them a “diagnostic home.” It was not enough to rescue the orphans from this pharmacological Fagin. They would need a new place to go.

When Shaffer and his colleagues started talking about the rescue effort more than ten years ago, there was one DSM-IV diagnosis that seemed suitable: Oppositional-Defiant Disorder (ODD), “a pattern of negativistic, hostile, and defiant behavior lasting at least 6 months” whose symptoms included “often loses temper,” “often argues with adults,” and “is often touchy.”

“The truth was that many of these kids would meet criteria for ODD,” said Shaffer. Without changing the criteria, let alone introducing a new diagnosis, they could be assigned to this category. But there was a problem. “ODD had become tarnished,” says Shaffer, by its association with two other diagnoses: Conduct Disorder, the label given to childhood bullies and thugs, and Antisocial Personality Disorder, or what is often called
sociopathy
. Longitudinal studies did not back up the hunch that ODD belonged in the same neighborhood as these diagnoses; kids with ODD did not go on to become thieves, rapists, or hedge fund managers in greater numbers than other kids. But the bad reputation was impossible to shed, or so Shaffer and his colleagues thought.

“So we had this problem: the criteria of ODD would fit most of the kids who were being diagnosed as bipolar, but we couldn’t call it ODD because it was a stigmatized name,” he explained. “It sounded like you were heading to be a crook, and people wouldn’t go for it.” By people, Shaffer said he meant not only the doctors who would be reluctant to deliver that verdict, but also, and more important, parents—who, even if they might want their kids to head for medical school, wouldn’t want them to come out like Joseph Biederman. And parents were likely to be unhappy when they discovered that insurance companies tended not to be as generous with treatment dollars for ODD as they were for Bipolar Disorder, which, perversely, has the better reputation of the two because it is a worse disease.

“Our real audience must be the parents,” Shaffer said he told his colleagues when they were deliberating over the name for the new disorder. And the name they came up with is what Shaffer thought was his fault. It’s not that his proposal didn’t make sense, especially for his main audience. “It’s an area with a big parent movement,” he said. “What they see are kids with terrible tempers. So, I thought, let’s give it a nontechnical name. Couldn’t we just call it Temper Dysregulation Disorder?”

Shaffer says he couldn’t have known that by using such a common word as
temper
, he would be walking into Allen Frances’s arguments about “psychiatrizing normal behavior.” But it’s not as if he didn’t have warning. He didn’t exactly focus-group the new label, but he did run it by his colleagues. At least one of them objected vehemently. “Ellen said, ‘Oh, God, what a terrible name!’”

Ellen was Ellen Leibenluft, a psychiatrist at NIMH. In 2003, she and a group of colleagues tried to tease out the manic from the irritable among kids who were getting snared in Biederman’s expanded net. They looked for ways (other than the mania/irritability distinction) in which the two populations differed and proposed a “broad phenotype” that described the nonmanic patients. They called this phenotype “severe mood and behavioral dysregulation” and proposed “multisite clinical trials” to test whether the category was valid—whether, that is, the children would differ from one another not only according to their symptoms but also according to their family histories, the course of their troubles, and their response to treatment. There was already some suggestive, if preliminary, evidence on this last question: “
that children with the broad phenotype
¹⁰
may respond well to stimulants”—to the old standbys Ritalin and Adderall, in other words, rather than to Biederman’s pet drug Risperdal and the other antipsychotics.

Leibenluft later wrote that her intention was not to “
claim to define a new diagnosis
¹¹
. She didn’t mean to establish a new territory in the landscape of mental illness, but rather to strengthen the boundaries of the one that already existed—Bipolar Disorder—and to make sure that certain patients remained outside them. Still, the description of severe mood dysregulation, with its criteria list and its parameters—“markedly increased” and “at least half of the day most days” and its “symptoms have been present for at least 12 months”—looked an awful lot like something that would appear in the DSM. And sure enough, when the DSM-5 proposals hit the Web in February 2010, the disorder, with Shaffer’s terrible name attached, had been nominated for the big show.

The work group on childhood and adolescent disorders acknowledged the doubts their proposal raised. In the paper “
Justification for Temper Dysregulation Disorder with Dysphoria
¹²
,” it questioned whether it was “premature to suggest the addition of the TDD diagnosis, since . . . many questions remain unanswered.” Most of the research they relied on had been conducted before the idea of TDD had even been advanced, so researchers had had to render “proxy definitions,” mining old data for information that, had those researchers been interested in TDD, would have been relevant. And although some clinical trials had been conducted using the research criteria, they hadn’t yet addressed the question of which drugs the kids should get, which meant that clinicians might well render the diagnosis and still reach for the Risperdal.