It’s too bad the doctors’ brains weren’t being scanned as they gazed upon the evidence that their most fevered cravings were on the verge of fulfillment, that after a century of wandering in the biomedical desert, one psychiatrist was ready to lead them home.
O’Brien ended his talk by pointing out that it’s not just boozers and cokeheads whose addiction (and, presumably, recovery) can be verified by the magic machines. “We’ve listed gambling with the use disorders and we’ve put Internet Use Disorder in the Appendix,” O’Brien said. He’d saved it to the end, but this news was hardly an afterthought. By poaching what the DSM-IV had called Pathological Gambling from the disorders of impulse control work group, his committee had pulled off a coup. It had made official what once was only folk wisdom: that we could be addicted to behaviors as well as to drugs. We could be workaholics and shopaholics, sex addicts and love addicts, hooked on cyberporn and jonesing for carbs. (Indeed, the first question O’Brien fielded was from the head of the Food Addiction Institute, who demanded to know why food addiction hadn’t been included.) Any strong desire could be put under surveillance and diagnosed with dead certainty, and any behavior with the telltale signs, anything that set that circuitry in motion, could be called a disease.
The brain scanner, O’Brien said, “tells us directly what’s going on.” And that’s the beauty part: no need to take your hints from what junkies or boozers say or how they say it. Indeed, there’s no need to talk (or listen) to them at all. Neither is there any reason to pay attention to those English professors and other amateurs who, emboldened by the DSM’s simple language, might kvetch that it might not be such a good idea to pathologize desire in a country where people line up at midnight to buy the newest iPhone, where greed is a virtue and the pursuit of wealth a spectator sport, where an entire economy depends on an endless cycle of craving and not-quite-satisfaction. When the DSM is finally full of words like nucleus accumbens and putamen, these critics will be out of business.
And so will the rest of us. Because if the brain scanners fulfill their promise, psychiatrists will finally be able to cut out the middleman entirely, and with him the subjectivity that was once psychiatry’s bread and butter, but which, especially when it comes to diagnosis, has become its bane. After all, who needs dimensional assessment forms, let alone the stunted conversations that allow clinicians to fill them in, when you have raclopride?
• • •
While Regier was presenting the results of the field trials, the 159 voting members of the APA Assembly were taking up a question of great importance to him. Roger Peele, the assembly’s representative to the DSM-5 task force, had proposed an action paper that called for all the dimensional measures Regier had proposed—the cross-cutting assessments, the severity scales, and the personality disorder ratings—to be placed in Section 3, the task force’s new name for the Appendix, where they would await “further study.”
“I wanted to avoid a repeat of Axis V2,” Peele told me, referring to the DSM-IV scale that asks a clinician to rate a patient’s overall functioning from 1 to 100. Once that measure had been instituted, Peele remembered, “insurance companies used it as a basis to deny service.” The result was predictable—“One of the first things you were told when you joined a hospital staff was, ‘Doctor, all Axis V’s on this ward are a forty or less’”—and regrettable.
“It makes a farce of psychiatry,” he said.
And it wasn’t just the insurance companies whose demands turned psychiatry into a game of Diagnosing for Dollars. A public sector psychiatrist, Peele knew that bureaucracies like his were number-crazy. If the DSM offered measures, then clinicians were sure to be compelled to use them, and their workload would increase—a problem obscured by the Facebook approach to evaluating the measures. “The ‘liking’ of severity scales . . . by clinicians volunteering to be part of the DSM-5 field trials is not necessarily representative of the vast majority of American clinicians who did not volunteer to be part of such trials despite many opportunities to do so,” he wrote in the resolution.
Perhaps the burden of the dimensions would have been worthwhile, and the method of evaluating them unimportant, had they had any scientific integrity. But “most, if not all, are not based on science,” Peele told me—and that was assuming you could even find out what they were. “Some of them are so immature that if you go to the website, they aren’t even shown.” And indeed, even at this late date, a click on the tab for many proposed measures returned the message that “recommendations . . . are forthcoming. We encourage you to check our Web site regularly for updates.”
The day before the assembly meeting, Regier had had a chance to defend himself to a committee with the power to endorse the resolution to the full body. He spoke longer than anyone else at the meeting, but nothing he said swayed the committee, which recommended the passage of the resolution; and the very next day the assembly voted unanimously to send the dimensional measures, which Regier had once promised as the key to springing the APA from its epistemic prison, to the elephant burial ground.
• • •
As he had in Hawaii, Michael First spent the beginning days of the meeting hanging out with this year’s gathering of the Association for the Advancement of Philosophy and Psychiatry. It wasn’t quite so captivating this time around. “Too much name-dropping of philosophers whose work I am not familiar with,” he told me, “so the arguments are too hard to follow.”
Still, First knew enough about philosophy and its significance to the DSM to have once put his name on a paper urging the task force to appoint a DSM-5 work group that would take up “conceptual issues” such as the definition of mental disorder. “Conceptual questions are not minor ‘side issues3’ to be dealt with in improvised ways,” the group wrote. “Conceptual clarification is a critical partner to good scientific work . . . [and] advances the scientific rigor of our work.” The paper was published in 2008. The task force never responded.
Four years later, and too late for them to have any impact, the philosophers were given a chance to philosophize at one of the annual meeting’s official symposia—“Philosophical and Pragmatic Problems for DSM-5.” But, as they had in Hawaii, they remained mostly on the fringes, this time at a Crowne Plaza a few blocks from the convention center, where the elevator actually stopped at the floor of the meeting room. Everyone attending had heard David Kupfer assert that the DSM was all but completed, and the panels on ideology and the role of science in medicine and other chewy issues seemed more like pathologists’ probes at a postmortem than clarifications contributed by critical partners.
First was the discussant for the symposium, which the APA had scheduled for the same time slot as the field-trial session. He had asked me to report the results to him. He shook his head as I read them off.
“Point twenty for GAD?” he asked. “Really?”
He ventured an explanation. The new criteria required a clinician to determine if the patient’s anxiety led him or her to avoid activities “with possible negative outcomes” or to procrastinate “due to worries” or to “repeatedly [seek] reassurance.” These, First thought, were vague notions, poorly written and untested; it was no surprise that clinicians could not agree on them.
This much, he acknowledged, was speculation. But that was his point: he had to speculate, and so would the people who had to figure out what to do with the DSM-5, because the field trials had not been designed to find out what had gone wrong, nor was there time for a second round to see if the problem, whatever it was, had been fixed. There was only one possible solution, First said: to go back to the DSM-IV definition.
I thought I might have glimpsed, for the first time, some Firstian schadenfreude, but he sounded more disappointed than gloating, like a professor explaining a concept to hardheaded students for the umpteenth time. He told me he was beginning to give up hope that the APA would listen to him, that indeed he was already looking beyond the publicat
ion of DSM-5. As the problems of the new book became clear, he thought the APA might draft him back into service, giving him a chance once again to do what he’d been born to do. After the conference, I suggested that if the DSM-5 turned out as he feared it might, he was likely to have his work cut out for him. “Yes,” he said, “but I do like a challenge4.”
• • •
Susan Swedo, chief of the Pediatrics and Developmental Neuroscience Branch at NIMH, started her talk on the second day by announcing she’d changed her title from the original “Neurodevelopmental Disorders, Including Autism Spectrum Disorder, Intellectual Developmental Disorder and Learning Disorder” to “Making National Headlines.” And it wasn’t because the new title was catchier.
“I felt if I just addressed5 what is being said about our criteria versus what they actually say,” she explained, “maybe you’d come away with a better idea of what we are doing.”
As much as she might have wanted to deliver the straight skinny to her colleagues, Swedo also wanted to settle some scores.
“The most glaring [headline] was in The New York Times,” she said. It had reported that Volkmar’s data had been “presented at a major medical meeting.” Swedo took a beat. “That major medical meeting turned out to be the winter meeting of the Icelandic Medical Association.”
The crowd tittered, and Regier laughed into his microphone.
“Thank you for laughing,” Swedo said. “Because there are about 250,000 people in Iceland, which means there are maybe half a dozen child psychiatrists in the country.”
If there were any Icelandic patriots in the crowd to defend their homeland (or just to tell Swedo that Iceland’s population is about 320,000), they kept silent. Reporter Ben Carey was definitely not present, so he couldn’t point out that his article didn’t call the Iceland conference a “major medical meeting.” And Fred Volkmar was back in New Haven, so he wasn’t able to remind Swedo that he had first presented his data in fall 2011, at the American Academy of Adolescent and Child Psychiatry’s annual conference, which is about as major as a meeting gets, and one at which she was also on the program.
Darrel Regier was there, and he had to listen as Swedo described her field-trial results as “superb,” then, as if remembering the kerfuffle over the meaning of kappa, corrected herself. “I’m sorry. Not superb. Very good. Superb only compared with the rest of DSM.” Regier wasn’t laughing anymore, but he didn’t object out loud to the slight, either. He was, after all, a veteran of scorched-earth campaigns; he must have known Swedo wasn’t taking prisoners, that it was best to stay out of her way.
It’s too bad no one was in attendance from the Asperger’s Association of New England, the group to which Nomi Kaim belongs. It would have been interesting to hear the organization’s response when Swedo, after complaining about all the people who had blown up her e-mail in-box after Carey and Volkmar had unnecessarily struck “fear in their hearts” and dismissing Volkmar’s study as “comparing apples to Apple computers” (but without refuting his data), explained why she thought it was safe to ignore their objections. “Most of the individuals who belong to the AANE call themselves Aspies,” she said, “but that may need to be a new diagnosis introduced in future editions of the DSM, because Aspies don’t actually have Asperger’s Disorder, much less Autism Spectrum Disorders.”
In the Q&A, I asked Swedo how she knew this.
“By my interactions with them,” she said. “We have been petitioned by so-called Aspies and literally they are writing to us and saying I am an Aspie . . . and they describe what, if they had seen a psychiatrist, might have been called Obsessive-Compulsive Personality Disorder.”
“So based on your interaction, you can conclude that people who call themselves Aspies don’t have Asperger’s?” I asked. Was she really diagnosing people whom she knew only through their letters of complaint? Did she maybe want to qualify this or elaborate on her earlier comment that Aspies were simply “Norwegian bachelor farmers, just a little awkward . . . but we would consider them to have a normal variation”? Did she mean to confirm in a public forum the worst fears of people with Asperger’s and their families: that the APA, convinced that they had made it on to the sick rolls illegitimately, was determined to kick them off?
Swedo backpedaled a little, allowing that some of the AANE members might indeed have Asperger’s, but still, she insisted, “there is an element of folks . . . who do not meet the criteria for DSM-IV.” Whatever they had, and they may well have had something (after all, they were harassing her), “it just didn’t have the same flavor as Asperger’s.”
Not that it really mattered, as Swedo’s answer to another questioner indicated. By now, she was sitting next to Regier and other panel members at a table, and the man wanted to hear from any or all of them what role the availability of services had played in the revision. Swedo took the mic. She told him a story about the field-trial clinician who had sent her a note saying, “My patient did not meet criteria for autism, but I know he has it, so I gave him the diagnosis anyway.”
This would have been the perfect time for Swedo to dress down her correspondent with the same withering sarcasm she’d used on Volkmar and Carey. After all, wasn’t this a perfect illustration of all that was wrong with the DSM-IV—that it had turned clinicians’ instincts, leavened by sympathy, into a diagnostic epidemic? Hadn’t the purpose of DSM-5 been to put an end to this kind of discretion and revoke the benefits of diagnosis from all those undeserving bachelor farmers?
Apparently not.
“I think this is actually quite appropriate,” Swedo said. “If the clinician’s gut feeling is that the patient has the disorder, it’s appropriate for them to get [the diagnosis], to give them the services, the treatment, whatever needs to happen.”
Swedo paused briefly. But if she was weighing the implications of suggesting that doctors ignore the new criteria the APA had just spent $25 million to fashion, if she was reconsidering what her comments meant for her profession’s scientific credibility or for the reputation of the man sitting right next to her, if she was even aware that she had just admitted that the whole enterprise was a confidence game, a way to give doctors plausible scientific cover even as they continued to diagnose and medicate their patients based on their gut feelings, their whims and fancies and judgments, it wasn’t evident when she resumed her answer.
“So politically it’s gotten a little messy,” she said, “but scientifically and clinically I think we remain committed to the idea that the purpose of the DSM is to provide clinicians with a road map. We’re not driving the car.”
And the map doesn’t really matter, because even if clinicians load the DSM into their GPS units, they’re going to take the routes their gut tells them are best. And if a doctor decides to head for uncharted territory, to lead his colleagues into the land where irritable children suffer Bipolar Disorder, or where attraction to thirteen-year-olds is Hebephilia, or a slave’s thirst for freedom is a symptom of drapetomania, if he thinks his MD plates entitle him to take his patients off-road or the wrong way down a one-way street or, for that matter, over a cliff, well, that’s not the APA’s fault.
• • •
Within two hours of the release of the field-trial data, Allen Frances had written a new blog post: “Newsflash from APA Meeting6: DSM-5 Has Flunked Its Reliability Test.”
“The DSM-5 has managed to fail in ways that go beyond my poor imagination,” he wrote. “Reliability this low . . . gravely undermines the credibility of DSM-5,” and the result would be a “book no one can trust.” The field trials thus signaled a “DSM-5 emergency”—an imminent loss of the authority that the DSM-III had earned and the DSM-IV had preserved—and the only way to “salvage this deplorable mess” was to reinstate the second round of field trials, which, of course, would mean delaying publication.
Speaking of deplorable messes, the blog (which appeared on the Psychology Today website) c
ontained a table of the results with misaligned columns, indecipherable abbreviations, and unintelligible figures. It looked as if it had been assembled hastily on a BlackBerry, which it had—but not Frances’s. I’d sent the list to him while Bill Narrow was droning on about something or other, and he’d copied and pasted it with my clumsy thumbwork intact.
Partly I did it because I was bored. And partly I did it for the same reason that your cat drops a beheaded mouse on your doorstep: to express gratitude for your care and feeding, and, maybe, to curry further favor. Although sometimes you have to wonder if Snowball is trying to make a point by leaving a bleeding carcass for you to find first thing in the morning—to remind you, perhaps, that while you may have an electric can opener, in the tooth-and-claw world she still has an advantage. Cats are sly and complicated creatures.
I wish I could say that I was too, and that I had somehow tricked Frances into revealing one of psychiatry’s dark little secrets when he wrote:
The great value to the field of DSM-III was that it established reliability and preserved the credibility of psychiatry at a time when it was becoming irrelevant because it seemed that psychiatrists could not agree on a diagnosis. Everyone knew that the reliability achieved in DSM field testing far exceeds what is possible in clinical practice, but DSM-III took the major step of proving that reliability could be achieved at all.
But I’m not that clever. And Frances doesn’t need to be tricked into saying this, nor would he agree that it has ever been a secret. In his world, the DSM was never more than a book of useful constructs validated in idealized settings, and this is not a problem because the point was never to establish the truth about mental disorders. But Frances had a questionable conviction as well: that he could trash the DSM-5 without trashing his profession.
The Book of Woe: The DSM and the Unmaking of Psychiatry Page 35
