The Book of Woe: The DSM and the Unmaking of Psychiatry (6 page)

The RDC may have renewed Kraepelin’s promissory note, but, so Spitzer claimed, it also provided the means for paying it off. Of course, Socrates’ observation still held: to gather together scattered particulars into groups was not to carve nature at its joints. But, Spitzer contended, all those observations, made by many researchers using the same language, would add up to a body of knowledge for each disorder, and
the nosology would inexorably gain substance
³⁵
. Two different teams researching depression, for example, would be able to claim that they were looking at the same phenomenon, and as findings converged and solidified, so would the case for the existence of depression as a disease. And if that convergence couldn’t or didn’t occur, then that would be an indication that there was something wrong with the category, that it had been ill conceived or poorly defined, or that it just plain didn’t exist.
Reliability
—the extent to which diagnostic criteria would yield agreement among clinicians—was not the same as
validity
, or the extent to which the diagnosis described an actual disease. But beefed-up reliability could at least make the profession seem less bogus.

“
The use of operational criteria
³⁶
for psychiatric diagnosis is an idea whose time has come!” Spitzer wrote in 1978. Of course, he knew that twenty-one diagnoses wouldn’t be nearly enough to cover the entire terrain over which psychiatrists claimed dominion, or to ensure that all their patients would qualify for a diagnosis and thus insurance reimbursement. He invited his colleagues to name the disorders they thought they were treating, and he found many of them eager to get in on the ground floor of the new scheme. He and his committees winnowed the suggestions, developed the criteria by which the survivors would be known, and assembled them into a diagnostic manual the likes of which had never been seen. A 500-page hardbound tome, the DSM-III made the spiral-bound, 134-page DSM-II look like a mere pamphlet. And by nearly doubling the number of mental disorders, it also vastly expanded the manual’s scope, turning it into an entirely new psychopathology of everyday life.

Even so, the DSM-III was not universally popular among psychiatrists. Some thought its symptom lists, its plain language, and its workaday disorder names degraded the profession. “Clerks rather than experts can make this kind of classification,” one grumbled.

This, of course, was exactly the point. Imagination was what had led psychiatry to founder; a Kraepelinian nosology was the best way to prevent psychiatrists from steering their profession back onto the shoals of unreliability. Spitzer had fashioned a dictionary of disorder that allowed psychiatrists to identify our foibles without recourse to the troublesome Freudian mumbo jumbo or, for that matter, any other mumbo jumbo.

And the result was sensational. The DSM-III not only restored both internal and external confidence in psychiatry; it was also an international bestseller. “It made an unbelievable amount of money for the APA,” Spitzer said. “That was a huge surprise.” And looking back on it, Spitzer has no question where the book’s popularity came from. “DSM-III looks very scientific,” he told me. “If you open it up, it looks like they must know something.”

•   •   •

The psychiatrists who wrote and used the DSM-III indeed knew something. They knew that certain symptoms tended to group together and that psychiatrists could reliably identify the people who belonged in those groups. But Spitzer acknowledges that the book did not solve the validity problem. He doesn’t even think it was supposed to. Indeed, he told me, the APA hired him to achieve only the smallest of bureaucratic goals—to bring the DSM into harmony with the World Health Organization’s International Classification of Diseases, known as the ICD. When I pressed him, he allowed that, of course, increasing reliability was also on his—and the APA’s—mind. But validity? “No, no,” he said, “not at all.” That’s not what they wanted, and that’s not what he meant to do.

Even now, in fact, the man who crafted the deal to delete homosexuality isn’t sure that homosexuality is not a valid disorder. “It has a distinct course, there’s no doubt about that,” he said, adding that there are gender differences in prevalence and evidence that it is a familial trait. But, he cautioned, “to decide whether it’s a disorder or a normal variant, you’d have to decide whether homosexuality represents a dysfunction. People who think it is a disorder would argue from an evolutionary viewpoint that we are hardwired for heterosexual attraction.”

Some of those people would also argue that a lack of heterosexual attraction is a disease to be cured, and in 2003, after interviewing two hundred people who claimed to have been “cured” of their sexual orientation by “reparative therapy,” Spitzer determined that “highly motivated” patients could indeed change their preference,
a conclusion he published in the
Archives of Sexual Behavior
³⁷
.
The journal accompanied the article with fiercely critical commentary, and in the popular press gay activists pilloried the man who had freed them from psychiatry. Spitzer defended his work then, but more recently, he told me, he had come to regret the paper and was considering “writing something in which I would say the critiques are largely or in many ways true.”

In May 2012, Spitzer did exactly that. His assumption that “participants’ reports of change were credible and not self-deception or outright lying” had been incorrect, he wrote in
a letter to the
Archives
³⁸
. His subjects had
told
him they were no longer attracted to people of the same sex, but “there was no way to determine if [their] accounts of change were valid.” Spitzer apologized to the “gay community” for making “unproven claims of the efficacy of reparative therapy” and to “any gay person who wasted time and energy undergoing [it].”

Spitzer’s recantation, and his ongoing uncertainty about homosexuality, reflect his questing and curious mind, which seeks empirical answers to difficult questions and is always open to new evidence. It also reflects his honesty about the limitations of his paradigm, which can elicit detailed accounts of what people are experiencing, but can’t say exactly what, if anything, to make of those accounts. Descriptive psychiatry can’t determine whether or not a person’s story about his sexual orientation is a true one. More important, it can’t tell us whether the list of symptoms, no matter how reliable, constitutes a disease. It can gather scattered particulars into a category called
gay
, but it can’t say whether those amount to the natural formation known as
disease
. It can’t carve nature at its joints.

Spitzer is also honest about the fact that the decisions he made to admit or exclude a diagnosis from the DSM-III were not entirely scientific. “The categories that were added were concepts that clinicians in those days thought were important,” he said, and their criteria consisted of what “clinicians said was a good way of defining them.” Spitzer was the nosological diplomat among clinicians squaring off over pet concepts. He was perfectly suited to this role because, in addition to his predilection for sorting, he said, “I love controversy. I love it!”

Spitzer no doubt had in mind the controversy he had presided over as his committees fought about diagnoses and criteria—but it was only a matter of time before a different kind of controversy set in. It was exactly the kind of controversy that Thomas Salmon had worried about, and the culprit was none other than Bob Spitzer’s DSM.

A
llen Frances often sings praise as a prelude to criticism, and sometimes in exact proportion. So when he tells me how brilliant Bob Spitzer is, how valuable he has been to psychiatry, and then adds, “I don’t want anything in your book that would hurt him the slightest bit,” which he does repeatedly, it is pretty clear that he’s winding up to plunk him. Not that he doesn’t deeply respect Spitzer—that’s obvious as soon as you see the two of them together—or doesn’t mean the praise. But he definitely has a beef with the man he replaced at the DSM’s helm.

The problem isn’t the DSM-III. The move to descriptive diagnosis was, Frances believes, necessary and beneficial for psychiatrists and patients alike. But almost immediately after that book came out in 1980, the APA decided to revise it. The new book would be called DSM-III-R, to reflect the fact that it was not a new edition, but a minor revision to correct textual errors and tweak criteria that were proving unwieldy. Spitzer was hired to direct the effort, but, according to Frances, “Bob couldn’t resist playing with it. He couldn’t resist the committee meetings, all the new diagnoses, all the excitement” as experts, once again given the opportunity to enshrine their pet ideas, advocated for new labels or criteria.

“
In the morning, everyone would be screaming ideas
¹
,” Frances recalled. “Bob [Spitzer] and Janet [Williams, Spitzer’s wife and a member of the revision committees] would be on a blackboard, trying to put it into some kind of order. Then we’d have lunch, usually a big lunch.” While the others ate, Spitzer and Williams would refine the morning’s arguing into diagnostic criteria. When the group reconvened, Frances said, “we’d be sleepy and much more subdued,” making it that much easier “for the most powerful person in the room to rule.” The wrangling continued after the sessions, as doctors collared Spitzer and lobbied for their proposals.

The backroom dealing was bad enough, Frances thought, but even worse, the fighting was in many ways pointless. “The things that looked so different to the people involved never amounted to a hill of beans,” Frances said. “Should the threshold for a diagnosis be four or five symptoms, should the criterion be this item or that? The answers are almost always arbitrary.” So in 1987, when Harold Pincus, then the APA’s director of research, offered him the job of running the DSM-IV revision, Frances told him he’d accept only if the process was entirely different. “The last thing I wanted was to be in rooms full of people pontificating without evidence about things that didn’t matter,” he said. As much as he might have coveted the job, “I never wanted to be in one of those meetings again.”

Frances didn’t always feel this way. In fact, at one time he was among the pontificators. “I knew the instinct,” he said—the one that leads a doctor to think that he’s seeing a cluster of symptoms that no one has put together before, and thus has discovered a new disorder. “You think you’re smarter than everyone else, and that what you’re seeing in this patient should be in the DSM.”

Frances himself had once followed the instinct, nominating Masochistic Personality Disorder
for DSM-III, aimed at
people who “employ self-sacrificing and self-defeating behavior
²
in service of maintaining relationships or self-esteem.” His proposal came under withering attack from feminists who considered it a way of blaming abusive relationships on women’s psychopathology. It also, Frances said, turned out to be a “
dumb idea
³
, because all the behaviors in a diagnostic manual of mental disorders are by definition self-defeating. The concept really adds nothing.” By 1980, he had abandoned the proposal, having learned an important lesson about diagnostic manuals. “Realizing in retrospect how dumb my own off-the-cuff suggestion was made me more alive to the fallibility of the many other off-the-cuff suggestions DSMs necessarily attract.”

As much as he wished to steer clear of the dumb arguing, however, Frances was even more intent on avoiding the pitfall that had snared Spitzer when he ran the DSM-III-R effort. “It’s much better to have a common language than a Babel of different languages,” he said, and the DSM-III had achieved that. But whatever stability and respectability this success had brought to the field was threatened by DSM-III-R. When that book came out in 1987, a year late, over budget, and even longer than the original, clinicians once again had to master new diagnoses, researchers had to piece together the new disorders with the old literature, and psychiatry, which had just barely settled down, was once again in turmoil.

The DSM-III had systematized the description of mental disorders, put labels on clusters of symptoms, but, as the DSM-III-R process had proved, those clusters could be arranged and rearranged indefinitely. Descriptive psychiatry was no small achievement, but the categories, the boundaries between them, and the criteria within them—these were not discoveries of nature at work, at least not in the same way that the identification of streptococcus and influenza, their characteristics, and the boundaries between them were. They were approximations, and even if they were based on careful observations, they were forever in debt to expert opinion.

The expert who led the move to delete homosexuality from the DSM might come to believe that homosexuality is a disease, and then once again decide that it is not. With each change of opinion comes the potential for instability and discord; and to Frances, this meant that the DSM-III’s achievement was a fragile one. “
The fact that we had a descriptive system only revealed
⁴
our limitations,” he said. “If you believe that labels are only labels, you don’t want to keep changing the language arbitrarily. It just confuses everybody.” If the DSM is not the map of an actual world against whose contours any changes can be validated, then opening up old arguments, or inviting new ones, might only sow dissension and reap chaos—and annoy Frances in the bargain. If he was going to revise the DSM, Frances told Pincus, then his goal would be stabilizing the system rather than trying to perfect it—or, as he put it to me, “
loving the pet, even if it is a mutt
⁵
.”

Frances thought there was a way to protect the system from both instability and pontificating: meta-analysis,
a statistical method that, thanks to advances in computer technology and statistical modeling, had recently allowed statisticians to compile results from large numbers of studies by combining disparate data into common terms. The result was a statistical synthesis by which many different research projects could be treated as one large study. “We needed something that would leave it up to the tables rather than the people,” he told me, and meta-analysis was perfect for the job. “The idea was you would have to present evidence in tabular form that would be so convincing it would jump up and grab people by the throats.”

“We put a lot of faith in meta-analysis,” Frances told me.

Not that he expected to use meta-analysis to sort out the arguments, at least not very often. “You need lots of data from lots of sources for a meta-analysis,” he said. “And I knew that the literature didn’t have the data. I knew we couldn’t do a real meta-analysis of most of what would come up.” If someone brought up one of those off-the-cuff ideas in a meeting, or collared him with a pet proposal at dinner, Frances would just tell him to bring him the data, which he was pretty sure didn’t exist. Meta-analysis would protect the DSM-IV (not to mention Frances) from the pontificators, the profession from confusion, the common language from its own tenuousness. With statistics guarding the gate, the revision would be modest. It might also be boring, but, Frances says, “dull is better than arbitrary.” Seven years after he met with Pincus, when the DSM-IV was released, it was nearly four hundred pages longer than the DSM-III-R, but most of the expansion was in the explanatory sections. Only a few new diagnoses had crossed Frances’s threshold, and the book remained fundamentally the same kind of manual. Just as he had promised, Frances had deferred to the tradition originated by Spitzer.

•   •   •

Not every psychiatrist loved the mutt. Among its more prominent detractors was Steven Hyman, who in 1996 became the head of the National Institute of Mental Health. A neurogeneticist by training, Hyman hadn’t thought much about nosology before taking over at NIMH. It “
seemed a bit like stamp collecting
⁶
,” he once wrote, “an absorbing activity perhaps, but not a vibrant area of inquiry.” But then he realized that the DSM was “a critical platform for research.” Its categories and criteria were the basis of decisions made by journal editors, grant reviewers, regulators, and the Food and Drug Administration, which meant that scientists were bound to frame their proposals in the DSM’s language. “DSM-IV diagnoses controlled the research questions they could ask, and perhaps, even imagine.”

“
The tendency [is] always strong
⁷
,” John Stuart Mill wrote in 1869, “to believe that whatever receives a name must be an entity or being, having an independent existence of its own.” To Hyman, who quoted Mill approvingly, this tendency had led all the stakeholders in nosology—scientists, regulators, editors, doctors, drug companies, and, of course, patients—to take the labels as more than labels, as the names of actual diseases. They had, at least according to Hyman,
reified
what were intended only as concepts.
And this was no mere abstract concern.

It became a source of real worry
⁸
to me, that as Institute director, I might be signing off on the expenditure of large sums of taxpayers’ money for . . . projects that almost never questioned the existing diagnostic categories despite their lack of validation.

The DSM, Hyman concluded, had “created an unintended epistemic prison,” and anyone with a stake in the mental health treatment system was trapped inside.

While he was at NIMH, Hyman had occasion to confide his reservations to at least one colleague: Steven Mirin, then medical director of the APA. Both men had been affiliated with Harvard and lived in the Boston area, but they’d become friends only after they had both arrived in Washington and their kids started attending the same schools. On a weekend afternoon in the summer of 1998, they were eating lunch by the side of Mirin’s suburban swimming pool when Mirin asked Hyman if NIMH would give the APA money to get the next revision of the DSM up and running.

Mirin’s request for taxpayer money to kick-start a project from which a private organization would reap huge profits was not as untoward as it might seem. After all, the DSM is indispensable to public health, and NIMH had helped fund the DSM-IV. Nonetheless, and despite their friendship, Hyman said no. He told Mirin that a revision was premature, not only because the ink was barely dry on the DSM-IV, but more important, because psychiatrists had yet to come up with a better way to carve up the landscape of mental illness. All they could do, Hyman thought, was continue to create and refine concepts that would then be mistaken for real disease entities, and further trap psychiatry in its epistemic prison. Until someone figured out how to fashion a key, Hyman didn’t think there was much point to another revision, and he wasn’t going to provide any public money for one. After all, you don’t remodel a house when the foundation is infested with termites.

Mirin didn’t fight back—mostly, he says, because he didn’t disagree. “The DSM was a system based on descriptive criteria influenced by experts in the field,” Mirin told me. “They had lots of opinions, but these couldn’t necessarily be validated.” The uncertainty out of which the diagnoses were fashioned could not help but show up in the clinic.

“It’s one thing to guess and another to biopsy a tumor or to measure an enzyme,” Mirin said. And both he and Hyman knew which method the DSM had saddled them with. Spitzer may have freed them from Freudian metaphysics, but still, as Mirin put it, “we were stuck with making diagnoses based on scripture.”

Even so, America’s leading psychiatrists weren’t about to renounce the only scriptures they had—mostly because, as much as they knew the DSM was flawed, they didn’t have anything with which to replace it. “
I realized that it got me nowhere
⁹
to criticize the DSM because that did not offer a constructive alternative,” Hyman told me. “In fact, given the way the DSM had controlled the imagination of scientists, there was little information with which to see beyond it.”

Hyman may have been anguishing about psychiatry’s predicament, but Mirin wasn’t losing any sleep over the fact that his profession was stuck guessing about categories that didn’t really exist. “I don’t recall feeling particularly tortured about it. The DSM was essential to being paid for treatment. Without its methodology, payors would see mental illnesses as figments of a provider’s imagination.” It was also essential to the APA’s finances. After all, Mirin told me, “coming down the mountain with the Ten Commandments sure sells a lot of books.”

•   •   •

Of all his accomplishments during his tenure in Washington, Steve Mirin seems proudest of the time he persuaded
The Washington
Post
to support legislation requiring insurers to pay for mental health care at the same level as other medical services. So far,
parity
, as this mandate was called,
had only been implemented in a few states, and often only for mental disorders considered by insurers to be biological in origin. In 2002, there was a bill pending in Congress that would make it binding everywhere and for the entire range of DSM-IV diagnoses. President George W. Bush had endorsed it, but the bill seemed likely to sink into the mud of the legislative process, in part, Mirin thought, because
the
Post
¹⁰
—“the hometown paper of every member of Congress,” as he put it—had twice come out against parity. So he arranged to meet on September 3 with an editorial page editor to see if he could sway the paper’s opinion.

Mirin arrived expecting an hour with a single editor, so he was surprised and pleased when six editors and a reporter filed into the conference room and talked with him for nearly ninety minutes. He may not have been losing sleep over it, but the editors did their best to torment him with the discrepancy between the DSM’s authority and the actual science behind it.
They “asked questions
¹¹
such as ‘How do you diagnose mental illness?’ and ‘How do you tell if it’s real?’ and ‘Do you have a science base like the rest of medicine does?’” Mirin told the
Psychiatric News.