• • •
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 evolve20 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.
Chapter 13
If 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 comments1 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 belonging2.” 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 diagno
stic 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 school3 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-on4,” 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 pediatrician5, 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 subjec
t, 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 relationship6 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.”
The Book of Woe: The DSM and the Unmaking of Psychiatry Page 20