The Book of Woe: The DSM and the Unmaking of Psychiatry (20 page)

•   •   •

Not every psychiatrist believes it’s necessary to keep such a tight watch on those gates. Roger Peele, APA trustee and DSM-5 task force member, for example, acknowledged that the “
DSM-IV has a label for everyone you might want to treat
¹⁷
.” But, he added, “ENTs [ear, nose, and throat doctors] don’t worry about the fact that everyone is going to have a cold.” Peele wished the “APA would get over their hang-up” and stop trying so hard to “avoid implying that everyone has had or will have a mental illness.”

Peele is eighty years old. He’s tall and handsome and has a sure, long stride and a regal bearing. He’s wearing an ascot tucked into an open-collar shirt that matches his blue eyes. But maybe it’s his low-cut, old-school sneakers, or his humble office with its government-issue furniture and less-than-commanding views of the Rockville, Maryland, strip malls, or the fact that he works for a county government, but somehow his suggestion that the APA’s nosological restraint is a neurotic symptom doesn’t seem designed to enhance his power or give the APA permission to unleash its id in unrestrained pursuit of financial satisfaction. Rather, it seems in service of the truth, at least as he sees it: that we all suffer psychological setbacks, that we could all at some point benefit from some time spent with a headshrinker, that the DSM-IV’s universal appeal, and its implicit provision for universal treatment (at least for the insured), are good for all of us, doctor and patient alike.

On the other hand, Peele ran for APA president in 2000 and 2009 and lost. The organization might not be ready for this kind of candor or to give up once and for all on the quest for a way to distinguish the sick from the merely suffering.

Darrel Regier certainly isn’t. “That’s the problem I went into the field to address,” he told me at the outset of our interview. To a numbers guy like Regier, concern over the findings of the Midtown Manhattan Study—the infamous 85 percent—is no mere hang-up. The result is a statistical impossibility. We can’t all be abnormal any more than everyone who lives in Lake Wobegon can be above average. And if most of those people never seek treatment, then how sick could they be? Moreover, as Regier likes to point out when people accuse the APA of disease mongering, there is no way that the current mental health treatment system, with its 45,000 psychiatrists and half a million psychologists, social workers, and counselors could possibly keep up with all that demand. Bad as it is that the numbers are likely inaccurate, it would be worse if they were not, because then we would truly be awash in mental illness, our treatment resources swamped.

Regier, a lifelong public health doctor, has to think about planning and policies and other unglamorous concerns that cannot be met without knowing how many people are sick and what diseases they have. That’s reason enough to devote a career to finding the elusive threshold, or so it seemed when I asked him to tell me exactly what the problem was with overdiagnosis. I wondered how an elite psychiatrist viewed the question, exactly what kind of harm he thought his profession could cause by labeling us. I wanted to know if he thought that a doctor who tells a widower that his grief is an illness is potentially not only labeling, stigmatizing, and medicating him, but also shaping the patient’s understanding of his loss, of himself, of the meaning of his life.

But Regier didn’t seem to comprehend my question. He seemed to think I wanted him to explain what
false positive
meant. He might not be the philosophical sort or, after a lifetime of cultivating bureaucratic habits, he might have lost sight of philosophy. He might have only wanted to not get so far away from his talking points with me. Or maybe he thought the answer was self-evident: sky-high prevalence rates are an affront to reason, to everything that scientific medicine, with its aspiration to carve nature at its joints, stands for.

Jay Scully was not so reticent.

We went through the usual reasons that psychiatrists give when they worry about the overdiagnosis problem: overtreatment, stigmatization, the credibility of the profession. But I wanted more from him. I wanted him to tell me why, from a psychiatrist’s point of view, it was a bad thing to, as he had just put it, “overpathologize the human experience.”

“Because it limits the other potential ways to fix things. It limits the whole spectrum of the human experience,” he said. “I mean really bad things happen that are not necessarily psychopathological. You’d have to be crazy to kill your family. Well, do you? Maybe not, but how do we know? Where are the sharp dividing lines? Maybe we never really know.”

It was the first time in our half hour together that Scully seemed genuinely interested, reflective, even spontaneous. “So,” I asked him, “the false positive problem is the problem of where psychiatry’s limits are?”

“Yes,” he said. “You know, we always need to be humble.”

As I sat with the CEO of American psychiatry, with
his $600,000-per-year salary
¹⁸
and his large office with its bird’s-eye view of the Potomac River and the Capitol, it was good to hear that word. It was good to know he thought that humility was important and to have heard him say, “Our treatment and ability to relieve suffering need work.” But he got quickly back on message, and the PR flack was looking at her watch and telling us our time was up, so I couldn’t ask him exactly what psychiatrists need to be humble about—whether it’s only the gap between suffering and their ability to relieve it, or if he was aware of that other, deeper chasm, the one between opportunity and knowledge, the one that gives psychiatrists the power to say what that dividing line is, and to cash in on saying it, even though they themselves don’t really know. Still, I was glad to hear this much.

Because as Montesquieu once said, “
The spirit of moderation
¹⁹
is what we call virtue in an aristocracy. It supplies the place of the spirit of equality in a popular state.” Perhaps medicine is inescapably an aristocracy, and self-imposed moderation the only check on power, the only way to prevent beneficence from becoming oppression. Surely medicine can’t be a democracy; we can’t vote on whether or not we are sick or elect which illness we have. If we can’t depend on definitions of mental disorder or on statistical measures of clinical significance to prevent the DSM from cataloging the entire spectrum of human experience, from turning all mental suffering into illness, then perhaps we are dependent on the sophistication, the restraint, the discretion—in short, the virtue—of our psychiatrists.

•   •   •

This is not a comforting thought. And not only because of the Biedermans and the Schatzbergs and the Nemeroffs out there, whose lack of restraint well exceeds the industry norm. But even for psychiatrists who see no need to supplement their $200,000 annual incomes with drug money, treatment options are deeply circumscribed—not only by the imperfect state of knowledge described by Scully, but also by a for-profit health care system that, with its focus on efficiencies, drives them inexorably toward the drugs about which they have been carefully educated by the makers.

Because Darrel Regier may be the kind of guy who would call his colleagues stupid in public and then complain that the debate had gotten personal, but he has spent an entire career as a public servant hacking away at one of the most daunting problems ever to come down the pike. It is impossible to come away from a conversation with him without believing that he really wants to solve that problem, and for a virtuous reason: to fashion a treatment system that effectively and efficiently relieves suffering. He wants a DSM that can help him and his colleagues to do this. He may be hard to like, but he is not evil.

But he also doesn’t seem to understand the spirit of moderation, or why it is incumbent upon an aristocrat to develop it—at least not to judge from what he said at the end of his talk in Copenhagen. Amid his circumlocutions and score settling, Regier had managed to convey one fact: he intended the DSM-5 to move psychiatry decisively in the direction of defining the thresholds of mental illness with numbers.

This alone was not news. But Regier was well aware that people like Michael First and Allen Frances were wondering in public how he could possibly pull this off, how he could, in the little time remaining, create, debug, and standardize measures that would be sufficient to the task. It was a question that made him even testier than usual, or at least it did when I e-mailed him to ask it just a couple of months before he went to Copenhagen. His proposal called for dimensional measures for every diagnosis, I wrote, but in our interview he had mentioned only a small number of tests for a few diagnoses and the information on the DSM-5 website was sketchy. Were there more details that he could give me?

“
They [the dimensional measures] will continue to evolve
²⁰
over time,” he assured me. When I pressed him for more information, he wrote, “I don’t think it will be useful to get into this level of detail on every diagnostic severity measure that we will be considering prior to the publication of DSM-5.” Still, he reiterated, even if they weren’t quite ready, “these scales will be input for a final clinical judgment about the severity level.” But Regier knew, and he knew that his colleagues in Copenhagen knew, that with less than three years to go before publication, dimensional measures were not going to evolve fast enough to be finalized for the DSM-5. Because he was doubling down and staking the DSM-5’s claim to a new paradigm on them, he had to explain himself—even if he still didn’t have the details.

Regier started by damning his predecessors with faint praise. “It is most remarkable that the simple advance of having some more reliable, explicit diagnostic criteria . . . has made it possible for our research enterprise to advance as far as it has,” he said. But those same checklists and categories had been an invitation to the much-lamented reification of mental disorders. Spitzer and Frances had presented the criteria as “essential components of an underlying pathophysiological and psychopathological process.” No wonder they had been taken too seriously!

If only the DSM’s diagnostic categories had been treated as hypotheses to be proved, rather than as diseases that had been discovered, Regier seemed to be saying, then scientists would have been free to validate them, to measure their severity and establish their thresholds, to find out whether they were really discrete entities or if they merged into one another on one or more spectrums of psychopathology. They wouldn’t be saddled with diagnoses that didn’t map well onto clinical experience or response to treatment or genetic research or molecular neuroscience, and they wouldn’t be cleaning the egg off their faces as those mismatches became evident or as those treatments failed.

Regier was not going to make the same mistakes with DSM-5. His book would not try to freeze mental disorders in amber, leaving a generation of scientists to regret its reifications and yet have no choice but to use them. It wouldn’t bury the fact that, as Scully told me, “the DSM will always be provisional” in disclaimers that no one would read. Instead, Regier told his colleagues, they would be built right into the part of the book to which everyone turned first: the categories and criteria. “Advances . . . will only occur,” he said, “if the definitions and diagnostic criteria for these disorders are constructed to facilitate their testing as scientific hypotheses.” And once the new book comes out, “the syndrome categories and quantitative thresholds can be tested.”

This is evidently what it meant to call the DSM-5 a living document. If the process seemed chaotic, this was only the inescapable ferment of innovation, and if the dimensional assessments weren’t quite ready for prime time, or if some of the proposals seemed a little sketchy, or if they ended up leading doctors to diagnose and treat patients who weren’t really ill, then that was because they were only hypotheses. If it turned out to be a mistake to, say, remove the bereavement exclusion or to introduce Temper Dysregulation Disorder, or to propose a particular test to measure the severity of a disorder, or to evaluate symptoms that don’t have anything to do with a patient’s diagnosis, then the troublesome section of the DSM-5 would be scrapped or revised in DSM-5.1. How this would affect patients whose diagnoses came and went, and with them their treatments, their own understanding of their troubles, and whatever identities their diagnoses had bestowed upon them—on this subject Regier didn’t obfuscate. Neither did he deflect the question with complaints about its unfairness. He just said nothing at all.

I
f Regier was silent about the potential effects of diagnostic caprice, the patients were not. By the end of the summer of 2010,
more than eight thousand comments
¹
had poured into the DSM-5 website. According to the
Psychiatric News
, 10 percent of them expressed concern that the APA would drop Gender Identity Disorder, and nearly a quarter implored the organization not to delete Asperger’s syndrome in favor of an Autistic Spectrum Disorder that may or may not include those currently diagnosed with Asperger’s. Four decades after homosexuals demanded to be released from their diagnostic chains, groups of patients were pleading with the APA
not
to set them free.

Regier promised readers
more details about the kvetchers, along with an official response, but in the meantime, the
News
offered one explanation for their complaints. Diagnoses, the paper wrote, provided “easy access to health services” like hormone treatments and sex-change surgery and special education programs, as well as therapy and medications.

People who have had to fight with insurance companies or school systems might have disagreed with the “easy” part, but then again, at least for the two thousand people who wrote in about Asperger’s, money wasn’t the main thing on their mind. As APA president Carol Bernstein wrote in the
News
, since they had been diagnosed, these patients had “
developed a strong sense of uniqueness and belonging
²
.” They even, she reported, had christened themselves “Aspies.” To delete the diagnosis might be to “deprive them of their identity.” Even worse, Bernstein acknowledged, those Asperger’s patients who were lucky enough to qualify for the new Autistic Spectrum Disorder would suddenly have a diagnosis that would be “more stigmatizing.”

The APA seemed caught off guard by the fact that some people liked their diagnoses just fine. “While the work group members conducted a thorough review of the existing data and research literature,” Bernstein wrote, the fact that the diagnoses had bestowed an identity on the patients had come as an “additional piece of evidence.”

It’s easy to see why the work group was surprised. After forty years of fending off their antipsychiatric enemies, after three decades of a diagnostic regime meant to reassure the public that psychiatrists didn’t mean to exert control over people’s identities any more than doctors parsing leukemia from lymphoma did, the APA had lost sight of what was obvious to Asperger’s patients and transgendered people and to anyone who has gotten diagnosed: that a psychiatric diagnosis is a judgment about more than the way your organs are functioning. Once you start to think of your troubles as a disease, your idea of yourself, which is to say who you are, changes.

•   •   •

If anyone from the APA had asked Nomi Kaim about this, they would have discovered not only that it was true, but that it could be a really good thing.

Nomi is twenty-seven. Her wire-rim glasses slip down her nose frequently. She moves her bulky body gingerly, as if she is afraid she will knock something over as she leads me to her favorite spot in the Boston bookstore where we have met. When she describes how much she once disliked herself, it is easy to see why. Not because she is unlikable—indeed, she seems sweet and considerate and acutely concerned for me, asking if my chair is comfortable and our conversation nook quiet enough for my voice recorder, whether my coffee is sufficiently hot—but because she was once exactly the kind of girl whom children will taunt relentlessly: smart and hyperarticulate, but overweight and ungainly and unfashionable, as untalented of body as she is talented of mind.

“
I fought to get myself comfortable in high school
³
and before that I fought to get myself comfortable at elementary school,” Nomi told me. She saw therapists, took drugs for her depression and anxiety, and finally, mercifully, graduated. She’d been accepted to Bryn Mawr but decided to take time off before she went, hoping that maturity would grant her some more social ease.

The college, she told me, “was exactly what I wanted”—at least when it came to academics. “In classes, I was where I belonged and I felt very fulfilled. But then I had to go back to the dormitory.” In the dorm, in the dining room, out on the campus, she felt out of place, overwhelmed by the noise and commotion of a couple thousand students, their loud music and their drinking, their impenetrable cliques. “I hated the whole campus life,” she said.

This time around, though, “the fight didn’t feel worth it. I was tired of that.” She went to the student health service and the doctors arranged for her to move into the school’s infirmary, where she lived out her first semester, attending classes but avoiding the parties and the friendships and even the dining hall. When she returned home for her winter break, she pondered her options. “I chose not to go back and fight some more.”

Going to college had always been Nomi’s plan. “I had only had one path in my head and it was Bryn Mawr,” she told me. “I didn’t have any other picture of what to do. So I got very depressed.”

Her parents placed her in McLean Hospital, a mental hospital associated with Harvard. There she was treated for depression and anxiety with drugs and cognitive-behavioral therapy. She also took part in therapy groups, but the intense contact with her fellow patients traumatized her. “I was just so emotionally flooded and didn’t know what to do with it,” she said. “I would ask to be excused and take a break and the therapists would say, ‘I want you to try to stay with it.’ They didn’t really get what was going on, either.”

What was going on didn’t become clear until Nomi’s mother, sure that Nomi’s lifelong struggles to negotiate the social world were the cause, not the effect, of her mood and anxiety disorders, arranged for her to be tested by a neuropsychologist at McLean. For two days Nomi answered questions and filled out forms and drew figures and solved puzzles. At the end, the psychologist told Nomi she had Asperger’s syndrome.

Nomi’s mother was glad to finally have an explanation for her daughter’s troubles. “She said, ‘Well, now we know. Thank God.’”

But not Nomi. “I was like, ‘That’s not what I was looking for. I don’t agree with this.’ I mean, it was just so not what I wanted.” Bad enough that “it sounded like ass burger,” she said; she could only imagine what a bully would do with that name. Even worse, the diagnosis seemed like a pronouncement on the one capacity of which she’d always been most sure: her intelligence. No matter how much the doctors reassured her that Asperger’s had nothing to do with her intelligence, still it seemed obvious that “I had this cluster of selective stupidity—social stupidity and practical stupidity,” she said. “And stupid was always the biggest insult for me. Kids use it as a weapon. It’s something I’ve always feared.”

But that wasn’t the worst of it. “All along, I’d been thinking my problems with feeling stupid were connected to mental illness,” Nomi recalled. “I was hoping it was a mental illness.” With mental illness, “there’s always this hope that if I can just conquer this, I’ll become normal. But nobody talks about conquering Asperger’s. The diagnosis undid all those hopes.”

That was before Nomi’s mother persuaded her to join the Asperger’s Association of New England (AANE), an advocacy group located just outside Boston. It took her a while to figure out that there was a difference between AANE and McLean Hospital. They weren’t going to make her stay in the groups if she felt overwhelmed, for instance. They weren’t going to make her go to groups at all or ridicule her for her peculiarities or force her to try to fit in. Everyone at AANE had the same kind of troubles, or at least understood what those troubles were. (Many of the group’s leaders and staff are parents of children with Asperger’s.) Her diagnosis was not a cause for exclusion, but a key into a world where, for the first time in her life, she didn’t have to fight to feel welcome.

Nomi thrived at AANE, volunteering in the office and becoming a mainstay of its speakers’ bureau. Before we met, I had watched her lead a workshop designed to help people with Asperger’s figure out how to live independently. She was a dynamic speaker, reassuring and sympathetic by turns, as she described the way she had learned to organize her life, to maintain a schedule, to stay in touch with family. She gave pointers on how to get disability status from Social Security, to find an affordable apartment, to go to school—all of which she had done after receiving her diagnosis.

Now she’s telling me about a benefit she did not mention in her talk: the way the Asperger’s label changed her sense of herself. “Spending time in an environment where the diagnosis is embraced as a difference, I started to see my diagnosis differently.” The fact that it wasn’t a “mental illness,” at least not by her definition, had become good news, a “gift” even. There were advantages to not being
neurotypical
, as people with Asperger’s sometimes describe the rest of us.

“There are certain things that neurotypical women in particular are obsessed with, shoes and clothes and makeup, that I’m very glad I’m not,” she said, adding that it isn’t just the girly preoccupations she was pleased to be relieved of. “In general, I’m very content with being completely outside of the popular culture fray.” Her diagnosis had helped her to do what is demanded of all of us but comes easier to some than others: to build a self out of the raw materials of nature and nurture.

“If I had to give up my Asperger’s,” says Nomi, “that would be hard.”

•   •   •

Nomi—like everyone thought to have Asperger’s—almost didn’t have a diagnosis to lose. Asperger’s syndrome didn’t exist until 1994, at least not officially, and even then it came close to not making it into the DSM-IV. “
It was a total add-on
⁴
,” said Fred Volkmar, the Yale psychiatrist who spearheaded the move to include it in the manual.

Less than twenty years ago, Asperger’s was not familiar to most American psychiatrists—or to anyone else for that matter.
The disorder was first described by an Austrian pediatrician
⁵
, Hans Asperger, in a 1944 paper outlining a cluster of symptoms that he had observed in some of his patients, mostly boys: abnormal, often pedantic speech; physical clumsiness; difficulty understanding gestures and other nonverbal communication; impaired social interaction; and inflexible interests, often in one narrow subject, such as train timetables. He called the syndrome
autistischen Psychopathen
, or autistic psychopathy.

Asperger’s work languished in an academic netherworld, his paper untranslated and mostly unknown until 1981. But then Lorna Wing, a British psychiatrist who had encountered Asperger’s work as part of her quest to understand her own daughter’s autism, wrote up thirty-four cases that she thought met Asperger’s description. They weren’t exact matches. Some were adults (the oldest was thirty-five), and many of them, contrary to what Asperger had described, had walked before they talked. And while Asperger wrote that his patients had “
an especially intimate relationship
⁶
with language and highly sophisticated linguistic skills,” and were in general more creative (at least in their field of specific interest) and smarter than most people, Wing didn’t think her patients were all that sophisticated or creative or intelligent. Their language “gives the impression of being learned by rote,” she noted, and “their thought processes are confined to a narrow, pedantic, literal, but logical chain of reasoning.” They may have used big words, but they didn’t necessarily understand what they meant. They may have been able to tell you the make and model and number of every locomotive on the tracks, but that didn’t mean they understood what a train was for. They may have been smarter than the average kid, but, she said, they were “conspicuously lacking in common sense.”

Still, however, Wing thought she had only refined Asperger’s observations. Her patients and his belonged in the same category, and there seemed to be enough patients who fit the description to warrant further investigation. Among the questions that Wing thought needed to be answered was how patients like hers were related to another group of socially unsuccessful children who had been described by another Austrian doctor. His name was Leo Kanner, and in 1924 he had emigrated to the South Dakota hinterlands, where he got a job as an assistant psychiatrist in an asylum. From there, he worked his way to Johns Hopkins, where he started the country’s first dedicated child psychiatry unit. In 1943, just a year before Asperger’s paper came out, he published an article describing children much more severely impaired than Asperger’s—unable to talk, mentally retarded, prone to rocking and other repetitive activities, and distressed when their rituals were disrupted. But like Asperger’s patients, Kanner’s were hard-pressed to negotiate the world of others, and he, too, called these patients autistic.

The two doctors were probably unaware of each other, at least at the beginning. They likely both borrowed the term from the same source: Eugen Bleuler, a Swiss psychiatrist who drew on the Greek root for
self
to describe the imperviousness to the outside world characteristic of schizophrenia. (This was the label most likely to be applied to Kanner’s patients.) But Kanner’s definition, perhaps because it described a much larger group (or maybe because he wrote in English), prevailed, and by the time Wing wrote her paper, it had become the industry standard. The Infantile Autism that made its way into the DSM-III was much more like Kanner’s description than like Asperger’s: a “
pervasive lack of responsiveness
⁷
to other people,” “gross deficits in language development,” and “bizarre responses to various aspects of the environment.”

On balance, Wing concluded, “
the syndromes are more alike than unalike
⁸
.” Both comprised impairments in three dimensions: language, interaction, and play. But where Kanner’s kids tended to be unable to talk, withdrawn from or even unaware of the social world, and absorbed in repetitive activities such as rocking, Asperger’s tended to be plenty talkative and engaged with the outside world, but in a strange and inept way. Like awkward teens at a prom, they wanted to dance, they even selected a partner, but they just didn’t know how to do the steps. This cluelessness, Wing suggested, was only a milder form of the deficits that characterized Kanner’s autism.