The Book of Woe: The DSM and the Unmaking of Psychiatry (23 page)

Besides, Lord told me, “we think these prevalence rates are accurate.” There was a problem with accuracy—not with the numbers of diagnoses, but with what doctors meant when they rendered them. “We want to make the criteria match up better with what clinicians are seeing when they make the diagnosis,” she said. The problem with criteria that were too vague and broad was not that doctors could use them too liberally—say, to make sure a kid who was a little odd got special services in school. Rather, Lord said, when they rendered their diagnoses, it wasn’t clear exactly what, if anything, the criteria had to do with the conclusion. In fact, the
most important factor in determining which diagnosis
³³
a kid got, at least according to a study Lord had conducted, was the hospital that did the evaluation. Doctors had reverted to the old pre-DSM-III way: deciding which illness a patient had through some combination of local custom and intuition, rather than by systematically applying the criteria.

But only astute clinicians could be trusted with this uncertain art. The rest of us—the parents who want their kids to qualify, the geeks who want to inherit the earth from the neurotypicals, the people who would prefer having a mental disorder over being a jerk—needed to have their leash yanked. “People use ‘Asperger’s’ and ‘autism’ colloquially,” Lord told me. Tightening the criteria would give the masses “who don’t know much about autism less of a feeling that everyone who’s socially awkward has autism.”

On the other hand, if those people want to call themselves Aspies, that’s fine by Lord. “We’re not trying to take away that identity,” she said. “It’s very helpful to some people. It’s just not a medical diagnosis.” Still, it was clear that the APA could take away what it had given—not the name, but the rights and privileges it had inadvertently granted by enshrining Asperger’s in the DSM. And, evidently, when the diagnosis got out of hand, that is exactly what it would do.

Lord reassured me that this wasn’t the problem it seemed to be. First of all, she said, “people with Asperger’s vacillate between wanting to describe themselves as having a disorder or not.” So deleting the diagnosis would actually help people like Nomi Kaim and CC Carley by providing the privileges without the burden and by removing the stink of pathology from their identity. As for those privileges, kids in special education have to get reevaluated every three years, so they are always at risk of losing their diagnoses. Of course, generally that would be because their condition has changed, not because it has disappeared from the DSM. But Lord was quite certain that the only problem patients would face was having to move from one diagnostic home to another. The overall prevalence rates, she said, were very unlikely to come down.

That was a question that would have to wait for field trials of the new diagnoses. But as the APA geared up for its annual meeting in May 2011, it was becoming evident that the field trials were in disarray, and even as their significance was increasing, they might not be able to shed much light on questions like these—even to the very few people from whom the results would not be kept a secret.

I
n early May 2011, the APA posted its revised draft of the DSM-5. Asperger’s syndrome was still slated for removal, as was the bereavement exclusion. But Psychosis Risk Syndrome (PRS) and Temper Dysregulation Disorder were gone. In their place were two new diagnoses—Attenuated Psychosis Symptoms Syndrome (APSS) and Disruptive Mood Dysregulation Disorder. The ingredients of the new disorders were exactly the same as the old ones. Only the labels had changed.

The renaming strategy had its obvious advantages. It got David Shaffer off the hook for suggesting a name that seemed to medicalize ill temper, even as the criteria continued to medicalize ill-tempered kids. It also allowed Will Carpenter to deflect attention from the research showing that kids whose illness consisted of being on the verge of psychosis rarely went on to get psychotic. On further consideration, he told me, his work group had realized that PRS really wasn’t a “prevention concept” at all, but rather “a diagnostic concept,” not an illness about to happen, but one in progress right now.

That explanation raised the question of why, if PRS was a disorder in its own right, the work group hadn’t proposed it as a “diagnostic concept” in the first place. It also didn’t explain why, according to the website, the rationale for introducing the diagnosis was that “young people at risk for later manifestation of a psychotic disorder can be identified,” or why APSS was still described as “a risk syndrome for psychosis.” Perhaps the APA’s marketing department and editorial department weren’t talking to each other.

“
People say, ‘What’s in a name
¹
?’” Dilip Jeste, the future president of the APA, told three hundred of his colleagues the week after the changes were posted. “But it seems the name means a lot to lots of people.” Jeste was talking about Mild Neurocognitive Disorder, a disorder once known as Minor Neurocognitive Disorder. He explained that many people who wrote into the website had complained to his neurocognitive disorders work group that
minor
was a “trivializing” word. “The people pointed out that if you call something minor, insurance companies will not reimburse,” he said.

Jeste wasn’t entirely happy with the committee’s solution. “It really doesn’t make any sense,” he said. He wasn’t talking about the way that the diagnosis, as he acknowledged a few sentences later, is only an exaggerated version of the normal cognitive decline that sets in after age fifty. But he pointed out that if there was going to be a Major Neurocognitive Disorder, “it should be minor versus major, not mild.” He solicited better suggestions from the audience. None was forthcoming.

But there is more than money in a name. Neurocognitive Disorder, however you qualified it, was a reworking of a DSM-IV label that was itself pretty tarnished, and getting more so as baby boomers aged: Dementia. “It’s a pejorative term,” Jeste said, because it came from the Greek for “losing one’s mind.” And no matter how much those of us over fifty might grouse privately that we’re losing our minds along with our memories, we really don’t want our doctors to agree with us, at least not officially, and surely not on our permanent medical dossier, not while the problem is still mild (or minor). Even in the later stages of Alzheimer’s, an undeniably major cognitive disorder,
dementia
might carry too much stigma, Jeste added. On the other hand, most people with major neurocognitive disorders eventually did lose their minds. So the work group decided to name the new diagnosis Major Neurocognitive Disorder (Dementia), and then, once the DSM-5 came out, to “let the marketplace decide.”

That’s probably not how Darrel Regier would have put it. He probably would have said, “Let the hypotheses be tested.” Still, the relabeling tactics helped to fill in the blank Regier had left when he didn’t get back to the
Psychiatric News
about the fate of the public suggestions. The kvetchers had been turned into a focus group, and, evidently, the diagnoses that didn’t meet with market approval would be rebranded.

•   •   •

Jeste’s talk was part of the APA’s 2011 annual meeting, held in Honolulu. “
Attire is ‘aloha business/casual
²
.’ No suits, ties or fancy dresses,” the website proclaimed, and many of the ten thousand psychiatrists in the soaring open-air atrium of the Hawaii Conference Center dutifully sported muumuus and Hawaiian shirts. The theme of the convention was “Transforming Mental Health Through Leadership, Discovery, and Collaboration,” but the APA leadership had discovered the necessity of keeping their most prominent collaborator at a distance. The conference’s printed program began with a sixteen-page disclosure index in which every speaker divulged whether he or she had taken remuneration from any drug companies (although not how much), information that was repeated at the start of every talk.

Not that the organization thought ties to the drug industry were really a problem anymore. “The APA has a management of conflict process for all [educational] activities,” read the manual. “This process ensures that all conflicts of interest are identified, managed, and resolved prior to the educational activity.” Even so, disclosure before the lecture remained important because an audience that knew “which relevant financial relationships . . . were present and resolved” could assess “the potential for bias” that might have somehow slipped past the conflict managers.

The disclosures weren’t the only way in which the proceedings had been sanitized for our protection. There wasn’t a Prozac pen or a Depakote dealy-bob or any other Pharma swag to be seen in the lobbies or lecture rooms, sponsored lectures were not listed in the main program, and overall industry funding of the meeting was less than $2 million, down from its high in 2006 of more than $6 million. The drug companies had been relegated to the basement exhibition hall, where they competed for the busy psychiatrist’s attention with the mental hospitals and the booksellers and the job recruiters and the shiny-faced men and women hawking neurofeedback gadgets and even a “physical fitness” kiosk where doctors could sharpen their Wii golf skills.

The APA’s attempt to clean up its act had not persuaded its enemies to stand down. The Citizens Commission on Human Rights, the Scientology cadre devoted to tormenting the APA, maintained a steady presence on the curb outside the conference center, handing out flyers that touted an exhibition—
Psychiatry: An Industry of Death
—it was staging elsewhere in Honolulu. On the flyer’s other side was a rogue’s gallery, complete with photos of Alan Schatzberg, Nada Stotland, Dilip Jeste, David Kupfer, and other industry collaborators. The Honolulu police, when they weren’t enforcing the jaywalking laws, made sure the protesters did not harass the guests.

The opposition wasn’t all behind the barricades. Psychiatrists outside the ten or so sessions related to the DSM could be heard grumbling about rearranged deck chairs, and anyone who stumbled into the “Clinicians’ Impressions of the DSM-5 Personality Disorders” symposium would have heard psychologist Thomas Widiger excoriate the personality disorders work group for courting ridicule and chaos by proposing to wipe out in one stroke five of the DSM-IV’s ten personality disorders and, as if that weren’t bad enough, “
invent[ing] out of thin air
³
” a model of personality pathology that ignored decades of research and then, even more embarrassing, changing its mind repeatedly about how many facets made up a personality and what exactly they were and how they related to one another, before finally advancing a proposal that inspired a virtual mutiny among personality researchers, which in turn persuaded the task force to compel the work group to pull it from the website in favor of a notice to check back later. And, Widiger lamented, even if the particulars weren’t yet worked out and even if this was the stupidest idea to come down the pike in a long time, maybe ever, still it was clear that nothing was going to stop this juggernaut, that when the new version was posted it would be just as bad as the old, thus proving, as Widiger put it, that “like with the Borg, resistance is futile.”

But overall, the protest was nothing like the chaos that had engulfed the meetings in the early 1970s, when gay activists launched their fusillades against the homosexuality diagnosis, or at the end of the decade, when Robert Spitzer and psychoanalysts squared off over the DSM-III. Whatever dissent the DSM-5 might have been sowing scattered quickly in the tropical breezes, which, combined with the Waikiki surf and the palm trees and the dress code, made the open-air atrium feel more like the lobby at a Jimmy Buffet concert than the site of trenchant debates about the nature of human suffering.

If there was any sign of trouble in Margaritaville, it was in the reminders, repeated by Regier and Kupfer at every opportunity, that all was well. The two DSM leaders hadn’t gone the full aloha, settling for open-necked Oxford shirts rather than floral prints on rayon, and they seemed at least a little relaxed. But their stump speeches, with their reminders of all that was wrong with the DSM-IV, their recital of the long effort to fix it, and their reassurances that the revision was “very much on target” for May 2013 had, like the APA’s protestations that it was Pharma-free, more than a faint whiff of defensiveness, as if they felt some urgency to bolster the confidence of the rank and file. Among the loyal, only David Shaffer directly addressed the controversy, and then only fleetingly. “
I do sense a reactionary element
⁴
penetrating DSM-5,” he said, “and I hope it goes away.”

•   •   •

Allen Frances wasn’t in Honolulu, but he hadn’t gone away. In the past few months, his blogs had increasingly addressed the APA leadership directly, imploring them to change course. Privately, he was sending e-mails directly to the few people inside he thought might listen to him. But, at least to judge by his rising stridency and the frustration creeping into his tone, he was pretty sure they weren’t listening.

Michael First, however, didn’t have the luxury of being retired. “I still have to work with these guys,” he said. “And I’ll have to work with them after the DSM-5 comes out.” So he was there, working to maintain what he described as “cordial” relations with Regier and Kupfer and others in the DSM leadership as he continued in his role on the WHO panel formulating the new ICD.

First isn’t exactly a firebrand by temperament. Where Frances shoots from the hip and peppers his salvos with literary and historical references, First sticks to data and the narrowest possible understanding of whatever question is in front of him. Ask him about a diagnostic controversy, and he’ll drill deeply into the research, the specifics of which he will recall nearly perfectly, or he’ll go on about the fine points of establishing reliability, or he will talk about the clinical utility of the diagnosis. If the subject were baseball, he’d be talking about on-base percentage versus run production, while Frances would be wondering if the designated hitter rule violated the pastoral origins of the game and tracing the origins of the question back to Thucydides.

As much as he has devoted his career to all things DSM, First doesn’t think the book has as much social impact as Frances thinks it does. “
Allen and I have a big disagreement
⁵
about these epidemics he always talks about,” he told me. “I tend to think he greatly overstates the role of the DSM.” Take ADHD, for example, he said. Frances is sure that simplifying the criteria led directly to the increase in diagnosis and prescription of stimulants to kids. “I completely disagree that what we did in DSM-IV was really responsible for the huge overdiagnosis and overuse of medication. There are all these social factors, and all kinds of reasons why people use diagnoses. The DSM is a very small component.”

But whatever disagreements First had with either side, they weren’t going to be rehearsed at the annual meeting, at least not in the scheduled sessions, which paid scant attention to the brewing controversies. There was a place, however, where conceptual issues were in play: at a Hilton on the other end of Waikiki, where the Association for the Advancement of Philosophy and Psychiatry was holding a confab, “The Future of Psychiatric Nosology,” and where First could be found for the first two days of the meeting. The room’s low ceiling and dingy carpet, its stale, stuffy atmosphere, the balky sound system that at random moments broadcast the signal of a local radio station—all contrasted starkly with the towering grandeur of the convention center. As you wound your way down the short, narrow staircase that connected the room to the elevator stop above, you couldn’t help but think of the film
Being John Malkovich
and wonder if you had happened upon a real-life 8½th floor.

The thirty or forty people gathered seemed unfazed by their surroundings as they dug into questions such as “What Is It to Be Diagnosed?” and “What Would a Scientific and Valid DSM Look Like?” The group was not without its own rifts—one presenter fired back at his questioner, “If I could be permitted just one ad hominem response, do you treat Posttraumatic Stress Disorder or just cause it?”—but all the participants seemed at home with the apocalyptic tone Jim Phillips, the keynote speaker, conjured in the title of his talk: “Slouching Toward DSM-5.” If the mood up the road at the convention center was breezily optimistic, at the Hilton it was angry, worried, even despairing—not least because of the way concerns about the meaning of diagnosis, its impact on identity, and the seeming impossibility of grafting psychological suffering onto the medical model of disease had been relegated to this dingy outpost, as if the APA didn’t even understand the conceptual complexity, the profound and far-reaching implications of its own product. By the end of the conference, two psychiatrists in the group announced their intentions to leave the field, largely, they said, because they had come to realize that all other forms of resistance were indeed futile. Whatever future psychiatric nosology might have, it seems, they didn’t want any part of it.

Amid all these sweeping critiques and meaty topics—“Metaethics and Mental Illness,” for example, or “Epistemic and Nonepistemic Values in Psychiatry”—
First stuck to small ball
⁶
. He described how the APA originally justified undertaking the DSM-5 in order to keep in harmony with the World Health Organization’s planned ICD-11, but then the ICD-11 had been delayed, and the U.S. put off implementing the ICD-10, which had come out in 1992 and was the original justification for the DSM-IV, which was therefore still using codes from the ICD-9, but the ICD-10 would finally go into effect in October 2013, which had become the new justification for the DSM-5, but since the DSM-IV had been keyed to the ICD-10, it was not really necessary to revise the manual, only to “crosswalk” the codes. “You might be scratching your head about this,” he said. “You might go, ‘Huh, I’m totally confused here.’”