The Book of Woe: The DSM and the Unmaking of Psychiatry (37 page)

•   •   •

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 addressed
⁵
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 Meeting
⁶
: 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) contained 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 controversy stirred by my critique
⁷
of DSM-5 is a terrible moment in the history of psychiatry,” he told me the month after the annual meeting. “This is the worst thing to happen to the field’s credibility since Rosenhan—and psychiatry is a field that especially requires credibility to be effective. I know I have done grave harm.”

Frances reasoned that the damage to misdiagnosed and overdiagnosed patients was a graver harm than undermining psychiatry’s credibility with the truth. It was the kind of calculation Cincinnatus might have made, hoping to hasten his return to the farm. Frances had gambled that the fragile edifice Spitzer had erected and he had reinforced would withstand the weight of the truth, that one of the guardians of the noble lie could reveal it and yet somehow preserve the authority the lie had purchased. And even as he fended off more antipsychiatrists drafting him unwillingly into their cause and more attorneys eager to use his own criticisms to undermine his (and his profession’s) credibility, he continued to be certain he’d made the right choice.

It’s possible he was compelled by unconscious inner necessity to blurt out the truth, or that contrition or self-loathing or that old Freudian notion, the
death instinct
—the inbuilt yearning for the chaos that the lies of civilization, noble and otherwise, hold at bay—drove him. He would say that what he did was much simpler than that, that it grew from an easy calculus, nearly bureaucratic in its plainness: that the only chance to preserve the DSM’s hard-won authority was to stop the APA from going ahead with the worst of its ideas—especially those, like removing the bereavement exclusion, that would badly cashier the reputation of his beloved profession. He would also say that it doesn’t require vast sophistication to grasp the reality: that a language by which two doctors can agree on a name for a patient’s subjective suffering is a signal achievement no matter how contrived, and worth preserving despite its many flaws.

In this, he may have overestimated the value of that language. He may also have overestimated the tolerance of Americans for bullshit. But above all, Allen Frances may have overestimated himself.

O
r maybe it was just me he overestimated.

In October 2012, I join Frances and Manning in a hotel room near Harvard Medical School, where Frances is scheduled to address a bioethics seminar. A documentarian working on a film about the DSM is setting up her equipment. She has finally caught up with Frances after a four-month chase. He has decided that she should interview the two of us together. It’s not entirely clear to me if she is on board with that idea. Since June, Frances has mostly been quiet about the DSM. He is still blogging for
The Huffington Post
and
Psychology Today
and the
Psychiatric Times
, where he has weighed in on gun control and the presidential election and offered “to stop being an amateur columnist” if David Brooks would “stop being an amateur psychologist.” But the DSM has never been far from his mind, and as soon as the lights are on and the camera is running, he is back to it and drawing me into his explanation of all that has gone wrong with the DSM-5. I may be an upside-down Jesuit and he a world-weary rationalist, but for the moment, we’re just a couple of friends on the inside of the same joke. The filmmaker seems entertained, although it’s possible she is simply egging us on in hopes of capturing some outrageous Francesism on film. But he’s become more careful. In fact, he tells the camera, he’s learned his lesson, the one about how impertinent remarks might, in the wrong hands, turn his attacks on DSM-5 into attacks on psychiatry.

The director describes an Internet video she has seen, put out, she says, by Scientology’s Citizens Commission on Human Rights, in which the narrator somberly intones that even the head of the DSM-IV thinks psychiatry is bullshit. Frances looks over at me, vindicated.

The thing I don’t understand, he tells me (and I’m working from memory here; I didn’t tape our meeting), is that you think the words in the DSM are capable of great harm. So why aren’t you worried about the harm your words can do?

The question makes me think of the infamous line with which Janet Malcolm opened her book
The Journalist and the Murderer
. “Every journalist who is not too stupid or too full of himself to notice what is going on knows that what he does is morally indefensible.” Malcolm was writing about the way Joe McGinniss had seduced and betrayed Jeffrey MacDonald, promising exoneration and then penning indictment. But Frances is accusing me of more than luring him into candor with assurances that my criticism of psychiatric diagnosis was tempered by a recognition of its uses, and then using him as a cudgel in my own crusade against psychiatry. Indeed, he has always insisted he doesn’t care about his own image, and while that may be a little too much protest, it’s not hard to believe that his worries are genuine, and that my real betrayal is using his comment to harm the people who need to have confidence in their doctors (and keep taking their drugs) to get better. If the discrepancy between opportunity and knowledge remains under wraps, it seems, that’s not bullshit. That’s wisely deploying the placebo effect. That’s medicine.

The camera is rolling, or whatever it is that digital cameras do. I’m pinned and wriggling, scrambling for some way to explain why I don’t seem to care about what happens when people glimpse what’s behind the curtain. It isn’t the first time a psychiatrist has warned me that criticizing the profession would lead to dire consequences. It’s the profession’s stock response to anyone who attacks it, and I have a stock rebuttal: that I am sure more people have been hurt by the DSM, or at least by the treatments that follow diagnosis, than by anything I ever wrote. Yet it seems inadequate to the moment. I say some words, but they don’t really make sense, and they surely don’t answer his question. Frances sits back in his chair.

He has the right to his satisfaction. It is true that I didn’t give a moment’s thought to the question of whether reporting Frances’s comment (along with a lot of evidence that he is right) would hurt anyone. I always figure people are better off with the truth, which is probably why I went into both the therapy and the journalism businesses—and why I get angry when one of those professions hides its own uncomfortable truths. But as much as I like the way that sounds, maybe I’m just too full of myself to see that I’m using Frances and the patients, that they have become character and audience, and that I’m using truth as well, not as a virtue but as a narrative device, as the MacGuffin for exposing humbuggery and chronicling comeuppance, and that to undermine the already shaky foundations of a profession that offers the last and only hope for some patients—that has succeeded, at least in some cases, at quelling their hallucinations, modulating their mood swings, allaying their anxiety, and restoring them to some semblance of normal functioning—and to bring low the confidence man at the expense of his potentially satisfied customers is simply indefensible.

•   •   •

But then again, so is psychiatry, at least when it comes to the DSM. And not because the DSM-5 was botched or because the profession is a cabal of Pharma collaborators, although it harbors its fair share of both incompetents and conspirators, but because even at its best, even in the view of honest and eloquent men like Steve Hyman and Allen Frances, psychiatric diagnosis is fiction sold to the public as fact. And not the Supreme Fiction that Wallace Stevens says begins “by perceiving the idea / Of this invention, this invented world,” but a fallen fiction whose authors, if they are to hold on to their power, must insist that they have gathered together the scattered particulars of our suffering and sorted them according to their natural formations, even as they harbor the knowledge that they have done no such thing. That knowledge can be locked up, like Leibowitz’s Memorabilia in its monastery, but it will always escape when the DSM is opened for revision and doctors once again argue over matters that their science cannot settle.

Later that day, Frances is once again called upon to defend psychiatry against his own charges. In an elegant wood-paneled room at Harvard, just after he has told a group made up mostly of doctors why expert consensus—the method that has yielded the DSM—is both necessary and dangerous to public health, Arnold Relman, the eighty-nine-year-old former editor of
The New England Journal of Medicine
, professor emeritus at Harvard, and a longtime critic of for-profit health care, suggests that this tension is worse in psychiatry than in other specialties because psychiatric experts lack biological findings that can anchor diagnosis in something beyond the symptom. Where is psychiatry’s pneumococcus, Relman seems to be asking. Frances has fielded this question before, and he has a ready answer: that diagnostic uncertainty and lack of treatment specificity haunt all of medicine.

It’s a version of the argument Steve Mirin and Darrel Regier once made to the editors of
The Washington
Post
, and it was not entirely wrong. There are plenty of illnesses that are described purely in terms of their symptoms—chronic headache, for example, or idiopathic neuropathy—and devastating diseases, such as multiple sclerosis and cancer, that seem unlikely to have a single form caused by a single pathogen like pneumococcus. And while it is true that those diseases are often diagnosed by lab studies, if only to rule out other known causes of their symptoms, psychiatry is still not so different from other specialties in this sense.

But even if medical nosology, taken in the aggregate, is as fictive as psychiatric nosology, even if many of its diagnoses are merely descriptions of the problem in a medical language, still it would have its pneumococcus and its polio and its diabetes, not to mention its heart diseases and bone fractures, its blood counts and biopsies and X-rays, its antibiotics and vaccines, its cobalt-chromium stents and titanium joints, its brain surgeries and organ transplants. Even if its unknowns far surpass its knowns, medicine undeniably has its slam dunks. Even when they are found by accident, as they often are, and even when they seem miraculons, as they often do, these are not miracles or mere serendipities, but the discovery of the natural laws that govern our suffering. Medicine’s sure knowledge of those laws saves our lives and earns doctors our deference.

This is precisely what psychiatry lacks. Without a single mental disorder that meets the scientific demands of the day, let alone enough of them to make the DSM more than an invented world, and with its claim to “real medicine” still mostly aspirational, it cannot make good on its assertion that psychological suffering is best understood as medical illness. So it must guard its position jealously. Lacking confidence in itself, psychiatry must work ever harder to command ours. This is what unites the APA, with its circle-the-wagons paranoia, its deceptions and duplicity and tortured language, and Allen Frances, with his invocations of Leibowitz and his warnings about patients gone wild. He and Darrel Regier may be bitter opponents, but they both have the fear that comes with knowing the fragility of the edifice they share.

•   •   •

The APA had at least one opportunity for a slam dunk in the DSM-5. In an article published in
The American Journal of Psychiatry
, an international group of seventeen prominent men—including clinicians, psychoanalytically minded personality theorists, historians of medicine, biological psychiatrists, critics of biological psychiatry, and Bob Spitzer—urged the DSM Task Force to include in the DSM-5 a disorder they called
melancholia
. “
Melancholia,” they wrote
¹
, is “a syndrome with a long history and distinctly specific psychopathological features.” Melancholia is Winston Churchill’s black dog, Andrew Solomon’s noonday demon (an image he borrowed from Isaiah), William Styron’s darkness visible—a form of depression noted by doctors since Hippocrates and characterized by an unshakable despondency and sense of guilt that arises from nowhere, responds to nothing, and dissipates for no apparent reason.

The authors drew on thirty years of research to describe five clinical characteristics by which melancholia could be distinguished from other kinds of depression. Among those characteristics were biological findings that set the melancholics apart, notably
hypercortisolemia
and disturbances in
sleep architecture.
A sleep study could show whether or not patients had the reduced deep sleep and increased REM time characteristic of melancholia. And a dexamethasone suppression test
(DST)—in which patients were given a synthetic steroid to see if it suppressed the activity of their own hormonal system—could determine whether their cortisol, a stress hormone, was in overdrive. Patients who meet the criteria for melancholia are much more likely than other depressed people to show this abnormality. They are also much more likely than other depressives to respond to two treatments: tricyclic antidepressants (drugs discovered in the late 1950s and in wide use before the Prozac era) and electroconvulsive therapy
(ECT), better known as shock treatment, and they show less response to both placebos and cognitive-behavioral therapy. Melancholia, the proponents concluded, was a “
distinct, identifiable, and specifically treatable
²
affective syndrome.” It might even be, although they didn’t say this, a type of depression that actually was the result of a real chemical imbalance, a disorder onto which our biochemistry could be mapped.

The proposal included plenty of standard scientific evidence—clinical and lab studies, case histories, literature reviews—and, with its tie to cortisol, melancholia seemed to fit in with emerging theories about depression and stress. So you would think that the APA would have leaped at the opportunity to finally prove to dismissive doctors in other specialties and to a skeptical public that, at least in this one case, psychiatrists were real doctors treating real diseases that could be discerned with real tests and treated with real cures.

But you would be wrong. Melancholia not only failed to gain inclusion, it was not even given much consideration. Only five days after he had received the group’s proposal, in October 2008, mood disorders work group member William Coryell was already telling Max Fink, one of melancholia’s main proponents, that the odds were very long. The main obstacle was exactly what Fink and his colleagues thought was one of the great strengths of the proposal: the biological tests, especially the DST. “
I believe the inclusion of a biological measure
³
would be very hard to sell to the mood group,” Coryell wrote Fink—and not because the test was unreliable. “I agree there is more data to support using the DST for melancholia than for using any other measure for any other diagnosis,” he conceded. Even so, the DST would be “very hard to sell since it would be . . . the only biological test for any diagnosis being considered.” Coryell didn’t finish the thought, but the implication was obvious: a test for melancholia would make the lack of biological measures elsewhere in the DSM that much more glaring. It was a success that would only highlight the APA’s failures. (Coryell declined to comment.)

Sixteen months later, when the APA posted its first draft of the DSM-5, Coryell was proven correct. Melancholia didn’t even show up in the mood disorders section; it had merited only a single line in a section of “conditions proposed by others”—a category it shared with Parental Alienation Syndrome and Male-to-Eunuch Gender Identity Disorder, among others.

“
I [am] flabbergasted
⁴
that our suggestion . . . has been excluded from consideration,” Fink wrote to Coryell. “Carving out a well-defined type of mood disorder, one that carries with it the promise of homogeneous samples and optimized treatment outcomes, is a small step in the development of the classification, but it is one that has been extracted from Nature grudgingly, and deserves greater attention and consideration within . . . DSM-5.”

“
I believe you and your colleagues
⁵
are fundamentally correct,” Coryell replied. But, he added, his belief had “not been shared by any of the other work group members,” so there was “no point in pursuing it further.” Coryell ventured a new explanation for the outcome: that the proposal would “entail a fundamental change in the boundaries” of a diagnosis (MDD) that was “among the most enduring and stable” of the DSM’s categories. “Evidence for such a sweeping modification would need to be quite extensive and compelling.”