The Book of Woe: The DSM and the Unmaking of Psychiatry (34 page)

That’s probably not what the APA had in mind.

The incident left Chapman wondering about the APA. “What kind of organization slaps heavy legal threats on a member of the public just two days before Christmas, when it would be hard to get legal advice? What kind of organization is so lax that it issues cease-and-desist letters without having first established who owns the contested domains?”

The answer was obvious: an organization that was both intelligently conspiratorial
and
dopily incompetent. Or, as they might say in Hollywood,
The Gang That Couldn’t Shoot Straight
meets
The Parallax View.

S
peaking of conspiracies, Darrel Regier had a theory about Allen Frances’s complaint that the DSM-5 would extend the reach of psychiatry into everyday life. “
The idea of medicalizing normality
¹
,” he told a reporter in late January, “comes from a perspective that there are no psychiatric disorders, and you need to avoid stigmatizing people by giving them one.”

It’s possible that Regier had joined the crowd who believed that the former most powerful psychiatrist in America had become a devout antipsychiatrist. Or maybe he had just misunderstood what Frances really meant. But it’s also possible that Regier was getting desperate.

You couldn’t exactly blame him. The middle of January 2012 was the start of a terrible month-long period for him, the APA, and the DSM-5.

The first storm blew in from offshore on January 19, when Fred Volkmar gave a talk to the Icelandic Medical Association. Volkmar and a couple of his Yale colleagues had dusted off the data from the DSM-IV field trials for childhood disorders and then applied the proposed DSM-5 criteria to the same subjects. They determined that only 44 percent of the subjects who had received a diagnosis in the original study would have made it onto the proposed autism spectrum. And only twelve of the forty-eight original Asperger’s patients—the same cases that had unexpectedly strengthened the case for including Asperger’s in the DSM-IV—would have qualified under the new regime.

Volkmar had presented much of this data before, at a November meeting of the American Academy of Child and Adolescent Psychiatry in Toronto, but he wasn’t in any hurry to have it known by the general public. “
I wasn’t exactly hiding it
²
,” he told me. “But I am (or have been) friends with a number of people on the committee, and I knew that this would cause bad feeling.” And, he added, “I knew that the powers that be would take no hostages on this one.” So he didn’t approach reporters with the incendiary news that three-quarters of Asperger’s patients might soon be losing their diagnoses (or wouldn’t be getting them in the first place).

But then Benedict Carey, the
New York Times
reporter on the psychiatry beat, happened to call Volkmar on the eve of his trip to Iceland, fishing for news on the autism front. Volkmar still didn’t draw attention to the data reanalysis, but he did send Carey the slides from his upcoming presentation, and as soon as Carey saw the slide listing its results, he grasped their significance. His front-page story, “New Definition of Autism Will Exclude Many,” appeared on January 19 and quickly rocketed around the world via newspaper, TV, and blog. The
Times
followed up the next day with a story about the possible impact of a reduction in diagnoses on children and their families.

When he heard the news, GRASP’s Michael Carley was already rethinking his position in favor of the DSM-5 proposal—and not only because of Volkmar’s research. He’d gotten hold of another soon-to-be-published article, this one from a group at Louisiana State University, that had concluded the new criteria would exclude 37 percent of the patients, most of them at the high-functioning end of the spectrum. He now found himself siding with his son.

“
It was one thing to make a change
³
that relabeled people,” Carley told me, “and another to make a change that they knew would exclude so many.”

The promises the APA had issued since announcing the proposals now seemed like mere “
damage control
⁴
,” Carley told his members. “We think those who reassuringly tell us, ‘No one will be left behind,’ really mean, ‘No one will be left behind who deserves a diagnosis under the DSM-5 criteria.’” He now urged GRASPers to take action: by signing a petition opposing the changes and by flooding the APA’s phone lines with complaints. “Yes, they are telling you to e-mail instead,” he acknowledged. “But we ask that you please instead be the articulate, impassioned, and peaceful nuisance that is needed in this debate, and not adhere to their instructions.”

The APA scrambled its experts, but they couldn’t seem to agree on their talking points. “
We have to make sure
⁵
not everybody who is a little odd gets a diagnosis of autism or Asperger’s disorder,” David Kupfer told
The New York
Times
. Cathy Lord echoed this concern, telling the same reporter that her work group wanted to make sure “that autism was not used as a ‘fallback diagnosis.’” But she also reassured readers that “the committee’s own data shows very few who currently have a diagnosis would be dropped.” She didn’t say why, if the problem was so insignificant, the committee had gone to so much trouble to fix it.

Another work group member, Bryan King, tried a different approach. The question of overdiagnosis had never even been relevant to the proceedings, he claimed. “
There has never been an agenda
⁶
for us to restrict or limit the numbers of people diagnosed with autism,” he told
Medscape Medical News
, an industry outlet. “We’ve only wanted to get the criteria right,” he continued, as if a reduction of diagnoses was only a side effect of a drastic reduction in the number of possible symptom combinations that could result in a diagnosis. And even if a few people lost their official labels, they had nothing to fear: if one label disappears, he said, “then a different label will appear in its place. There will always be a way to capture the need for treatment.”

King didn’t say exactly what label was waiting in the wings for those fallback-diagnosed, a-little-odd kids who may or may not exist. Neither, apparently, did he realize he was giving up the game, acknowledging that
capturing
rather than
establishing
the need for treatment had become the purpose of diagnosis, nor did he consider how antipsychiatrists would treat that comment. After all, if every complaint that brings a person to a doctor demands a diagnosis, the next thing you know you’ll have a wholesale imperial medicalization of normality.

King was clear on one thing: Volkmar had unduly scared the bejesus out of people, at least to judge by the calls to King’s clinic, where the phones, he said, had been “ringing off the hook.”

At APA headquarters, despite Carley’s efforts, it wasn’t the phones that were taking the brunt. It was Regier’s e-mail in-box, which, he told a reporter, had been deluged with “
10,000 plus e-mails
⁷
” in the wake of the
New York
Times
articles. Regier added that he would have liked to respond to Volkmar’s numbers with his own, but he “was not willing to give detailed data . . . until [they] are subjected to peer review and are published.” He didn’t add “like some people I know,” but the implication was clear: Volkmar wasn’t playing fair, and Regier was once again the victim of his own scrupulousness. And in case he hadn’t sufficiently questioned Volkmar’s integrity, Regier threw another elbow, telling a reporter that Volkmar had a new book coming out about Asperger’s—a book whose market might well disappear with the diagnosis.

“I hope this is not what he said,” Volkmar responded, when the reporter passed along the comment.

“There is certainly a better way to phrase this,” Regier wrote back (after complaining that he hadn’t had much luck in “changing how journalists present a story”). “The point I was making is that Fred has a particular interest in Asperger’s,” he explained. That, evidently, was the best phrasing he could find.

•   •   •

Only five days after the autism story broke,
a Carey-penned DSM piece
⁸
once again made the front page of
The New York
Times
. This time around, the hook was
a
World Psychiatry
article by Jerry Wakefield and Michael First
⁹
questioning the evidence on which the proposal to remove the bereavement exclusion was based. Their argument was a detailed refutation of the research that Sid Zisook and his colleagues had mustered in favor of their notion that there wasn’t enough difference between bereavement-related depression and all other depression to warrant the exclusion.

“An estimated 8 to 10 million people lose a loved one every year, and something like a third to a half of them suffer depressive symptoms for up to a month afterward,” Wakefield told Carey. “This would pathologize them for behavior previously thought to be normal.” The article went on to detail the other DSM-5 proposals that threatened to raise the prevalence of mental disorders—Attenuated Psychosis Symptoms Syndrome, Binge Eating Disorder, Premenstrual Dysphoric Disorder. Carey quoted a psychiatrist who forecast a wider use of drugs as a result and let Frances issue yet another warning about the medicalizing of normality. Some experts were worried about the “corrosive effect” all this “politicking” might have on the revision process, Carey wrote, but others—including Steve Hyman and his successors at NIMH—thought it was mostly beside the point, which was why they were no longer interested in the DSM. “Nature does not respect psychiatric categories,” Carey concluded, and added that while there might someday be a nosology that nature would respect, “until then, there . . . will be the diagnostic manual.”

Carey gave Jay Scully an opportunity to defend the APA’s position. Rather than address the questions raised by the article, however, Scully decided to blame the messengers. “We’ve got electronic media around the clock, and we’ve made drafts of the proposed changes public online, for one thing,” he told Carey. “So anybody and everybody can comment on them, at any time, without any editors.” It was a curious tactic, and one that didn’t shed much light on the subject of diagnostic inflation, but then again, Scully couldn’t respond to that worry with reassuring statistics about prevalence from the field trials—and not because, as Regier had implied, the detailed data awaited analysis or because professional decorum demanded reticence, but because there was no such data, and there would never be any.

Helena Kraemer, chief architect of the field trials, had said as much earlier in January. Writing in the
American Journal of Psychiatry
, she had “
set out realistic expectations
¹⁰
” for her project, starting with the “contentious issue” of prevalence. Rates were going to change, Kraemer warned. Some new criteria were going to pick up more mental disorder in the population, and some were going to exclude people who might previously have been included. The only way to avoid these outcomes would be “to require that any existing difference between true and DSM-IV prevalence be reproduced in DSM-5”—or, to put it another way, to rig the game to leave prevalence unchanged. “Thus,” Kraemer concluded, “there are no specific expectations about the prevalence of disorders in DSM-5.”

But who was expecting that diagnostic rates would remain unchanged? Surely not Wakefield and First and Frances, or any of the civilians worried about the reach of psychiatry. Like Kraemer, they fully expected prevalence to change; what worried them was the possibility this would lead to epidemiological chaos. But unlike Kraemer, they weren’t in a position to find out, and, as she made clear in her very next sentence, she was not going to do that.

“The evaluations primarily address reliability,” Kraemer wrote, as if it somehow followed that because prevalence rates were bound to change, they weren’t worth looking into.
*

She didn’t explain further, so it is possible that this is not what she meant. Perhaps Regier had decided the problem that attracted him to the field—the Midtown Manhattan Study’s wild prevalence rates—was suddenly unimportant, or Kupfer had decided to leave the question to his imaginary gadfly friends. Maybe Kraemer thought her readers would leap over the gap in logic and assume that the only reasonable thing to do was to abandon the subject of how many people would be declared mentally ill in favor of the question of whether psychiatrists could agree on which mental illnesses they had. (Of course, as she had announced the previous May and repeated in the
AJP
article, people should temper their expectations about that subject as well.) But whatever the reasoning, it was clear that the field trials hadn’t been designed to address the issue. In fact, it seemed as if they’d been designed not to, as if the prevalence question needed to be avoided at all costs because the answers might be too disturbing, because they couldn’t help but point to the fact that the diagnostic sands were still shifting, and thus undermine confidence in the APA.

Okay, maybe that’s too much like
The Parallax View
. Certainly the APA’s disorganized, off-the-point, whiny response was pretty Keystone Kops. And even the most sure-footed organization might well have been knocked to its knees by the rush of events.

Scully and his crew barely had time to draw breath before
The New York
Times
struck again—this time with
a pair of op-ed columns
¹¹
about Asperger’s appearing on the same day, one by a psychiatrist who acknowledged that it was overdiagnosed (and looked forward to a time when “biological markers” would separate the sick from the weird), and the other by Benjamin Nugent, a writer whose psychologist mother, an expert in Asperger’s, had gotten him diagnosed when he was a teenager, but who, after he “moved to New York City and . . . met some people who shared my obsessions,” realized he wasn’t sick at all.

Before the APA could accuse all these writers of believing that mental illnesses don’t exist, or wonder if the Church of Scientology had bought
The New York
Times
, the news that the DSM-5 would throw kids out into the diagnostic cold had spread to more than one hundred outlets in twelve countries. In Great Britain, a group of dissenting psychologists and psychiatrists called a press conference. “
The proposals in DSM-5
¹²
are likely to shrink the pool of normality to a puddle,” one of them said, and the sound bite made it into papers and blogs all over the world.
The Lancet
¹³
, perhaps the most venerable of all medical journals, ran, in a single issue, a report on research showing Attenuated Psychosis Risk Syndrome to be invalid, an editorial decrying the removal of the bereavement exclusion, and a moving essay by the Harvard medical anthropologist Arthur Kleinman about his grief after losing his wife of forty-six years. A year later, Kleinman wrote, “
I still feel sadness
¹⁴
at times and harbour the sense that a part of me is gone forever. . . . I am still caring for our memories. Is there anything wrong (or pathological) with that?” Even politicians were piling on. State legislators in Illinois and New York introduced bills proposing to make the DSM-IV definition of autism, Asperger’s, and Pervasive Developmental Disorder the law of their lands, “
even if,” as the Illinois version put it
¹⁵
, “subsequent changes to the diagnostic criteria are adopted by the American Psychiatric Association.”