21

THE SCID

In 2016 Spitzer’s wife, Janet, invited me to attend his memorial lecture at the New York State Psychiatric Institute, his long-term employer. On my way to the lecture, while wandering along a cul-de-sac formed by a group of identical academic buildings, I lost my way and asked two young men, who looked like medical interns or residents, where I could find the institute. They pointed me to a building at the end of the street and waved as I walked off.

Their helpful responses reminded me of Rosenhan’s mini-experiment in “On Being Sane in Insane Places.” In the experiment’s first iteration, research assistants posed as lost students at Stanford Medical School and were catered to with a pushy level of politeness. In the second iteration, Rosenhan had his pseudopatients ask staff for directions and then monitored the responses. Rosenhan included this interaction from his Haverford hospitalization in his published paper:

Pseudopatient: Pardon me, Dr.. Could you tell me when I am eligible for grounds privileges?

Physician: “Good morning, Dave. How are you today?” (moves off without waiting for a response.)

(It is worth noting that all I could find in Rosenhan’s notes were the students who had conducted the experiment in the medical school—there is, frustratingly, zero conclusive evidence beyond what he wrote in the study that Rosenhan or the other pseudopatients actually conducted this experiment inside the psychiatric hospitals.)

When I finally arrived at the memorial lecture, the auditorium was packed. Dr. Michael First, a close colleague of Spitzer’s, opened with an overview of Spitzer’s work. Guess who made the cut?

“The following year David Rosenhan published a controversial paper in Science describing how eight pseudopatients were admitted to psychiatric wards for an average of nineteen days despite behaving normal after a single initial claim of hearing a voice that said ‘thud,’” Dr. First said. On my recording you hear my laugh. Rosenhan had wormed his way into Spitzer’s bio. “Now Bob wrote a scathing critique of this study, and this is a quote—and I like this quote because this is a typical way of Bob in his artful way of using language of sort of putting the study down. He said, ‘A careful examination of the study’s methods, results and conclusions leads me to a diagnosis of ‘logic in remission.’”

The room erupted in laughter. It still killed.

Dr. First finished his short introduction and called on Dr. Ken Kendler, a researcher and professor of psychiatry at Virginia Commonwealth University who contributed to the DSM-III-R (the revision of DSM-III) and DSM-IV, and chaired the DSM-5’s Scientific Review Committee. (I’m giving you this background because it makes what comes next all the more surprising.) I expected his lecture to be a “rah-rah-rah!” celebration of psychiatry’s bible. I was mistaken.

Ken Kendler has the kind of mind that expects you to rise to its level, but for our purposes I’ll attempt to sum up. Basically, he told the audience that in the process of legitimizing the DSM, psychiatrists took it literally, ignoring all the gray unknowns. Psychiatrists believed in the “reification of psychiatric diagnoses.” Or, in my words, psychiatrists got high on their own supply and started to believe that there was more there there. “We were really proud of our criteria when these came out and that kind of added to the sense that we really wanted a glow around these [diagnoses], to say that these are ‘real things,’ we’ve really got it here, it’s all in the manual,” Dr. Kendler said. “Kind of like Moses coming down from Mount Sinai, except it was a Jewish guy called Bob Spitzer.”

When Spitzer brought his tablets “down from the Mount” in the form of the DSM-III, the field embraced the manual with an almost religious devotion. “We ask people: Are you sad? Are you guilty? Is your appetite down? We’re struggling as a field. Symptoms and signs are all we fundamentally have,” said Dr. Kendler. Though the symptoms and signs are very real, the underlying causes remain as mysterious as they were a century ago.

The DSM-III did fundamentally change mental health care in this country—but many experts now question if the change was the right direction. “Rather than heading off into the brave new world of science, DSM-style psychiatry seemed in some ways to be heading out into the desert,” wrote Edward Shorter in his A History of Psychiatry. “The sheer endlessness of the syndrome parade caused an uneasy feeling that the process might be somehow out of control.”

It’s easy to forget that all of the major psychiatric diagnoses were designed and created by consensus. Creation was neither smooth nor orderly. A core group of less than ten people, most of whom were psychiatrists, “clustered around Spitzer, all of them talking as he banged out text on his typewriter. There were no computers, and revisions were made by manual cutting and pasting,” wrote Hannah Decker in The Making of the DSM. Angry disagreements abounded. Feelings were hurt. All the while Spitzer typed away furiously, a demon on his typewriter getting it all down, devoting seventy to eighty hours a week to the project. “There would be these meetings of the so-called experts or advisers, and people would be standing and sitting and moving around,” one psychiatrist who worked on the manual told the New Yorker. “People would talk on top of each other. But Bob would be too busy typing notes to chair the meeting in an orderly way.” Psychologist Theodore Millon, a DSM-III task force member, described the scene: “There was very little systematic research, and much of the research that existed was really a hodgepodge—scattered, inconsistent, and ambiguous. I think the majority of us recognized that the amount of good, solid science upon which we were making our decisions was pretty modest.”

Even reliability, trumpeted as one of the major wins of the new manual, was oversold. In 1988, 290 psychiatrists evaluated two case studies and were asked to offer a diagnosis based on DSM criteria. The researchers, however, had devised a way to test the clinicians’ own diagnostic biases: They created multiple patient case studies out of the two set examples by altering two factors: race and gender. Even when presented with identical symptoms, clinicians tended to identify black men as more severely ill than any other group. (This continues to be true today: One 2004 study showed that black men and women were four times more likely to receive a schizophrenia diagnosis than white patients in state hospitals.)

The issue with reliability is that consensus does not necessarily translate to legitimacy. “In days of yore, most physicians might agree that a patient was demonically possessed. They had good reliability, but poor validity,” noted Michael Alan Taylor in Hippocrates Cried.

Rosenhan never spoke publicly about his thoughts about the DSM. Given his private correspondence with Spitzer, I’m sure he suspected that his paper at least shaped parts of the manual. Would he be proud of the wide-reaching effects of his experiment or would he be dispirited by how his study was exploited to push the field’s agenda to save itself?

The next edition, the DSM-IV, was overseen by Allen Frances in 1994. “It followed dutifully in Spitzer’s footsteps, though it included new diagnoses and broadened and weakened the criteria that had to be met for any particular diagnosis to be assigned,” according to sociologist Andrew Scull.

As we saw, diagnostic boundaries for mental illness have collapsed and expanded over time. When Rosenhan was hospitalized, the schizophrenia diagnosis cast a far wider net than today. How shall we know them? Make that bucket too wide and these words become meaningless; make it too narrow and you miss people who desperately need help. Dr. Keith Conners, considered the “godfather of medication treatment for A.D.H.D.” who helped establish standards for diagnosis of the condition, expressed dismay at the growing numbers of kids (15 percent of high schoolers) with the label. “The numbers make it look like an epidemic. Well, it’s not. It’s preposterous,” he told the New York Times in 2013. “This is a concoction to justify the giving out of the medication at unprecedented and unjustified levels.”

When the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders came out in 2013, it crash-landed to terrible press. The DSM, behind schedule and belabored by criticisms from inside (and outside) its own ranks, aimed to implement a “dimensional aspect” or a continuum of mental disorders rather than the strict categories that defined the previous volumes. At least three books in 2013 slammed the manual before it was even published—Gary Greenberg’s The Book of Woe, Michael Alan Taylor’s Hippocrates Cried, and Allen Frances’s Saving Normal.

Saving Normal, which Frances described as “part mea culpa, part j’accuse, part cri de coeur,” all anti-DSM-5,¹ was the most vociferous given his former position as the head of the DSM-IV task force and his close relationship with DSM godfather Spitzer. It was, of all people, Spitzer himself who had recruited Frances from out of retirement to join him in warning the public that the new manual would likely “produce a very dangerous product.” The release of the manual was stalled twice—thanks, at least in part, to these two heavyweights. Frances wrote open letters to the APA, op-eds, and tweets. He admitted to the public that he had failed “to predict or prevent three new false epidemics of mental disorder in children—autism, attention deficit, and childhood bipolar disorder.” Diagnoses of childhood bipolar disorder had increased fortyfold in the eight years between 1994 and 2002; there had been a fifty-seven-fold increase in children’s autism spectrum diagnoses between the 1970s and today; and attention-deficit/hyperactivity disorder, once a rarity, now affected an estimated 8 percent of children between the ages of two and seventeen. Frances’s point that our definitions have drastic, real-life implications was a valid one—were we reaching people who had long been ignored or were we overdiagnosing and overmedicating children? Frances warned that the DSM-5 would further “mislabel normal people” and create “a society of pill poppers” (in a time when already one in six adults were using at least one drug for psychiatric problems). Some APA psychiatrists reacted by arguing that Frances had not only a reputation to save but also money to lose, because the new manual would reduce the royalties he was collecting on his own creation, the earlier version of the book.

Still other greats in the field piled on. Dr. Steven Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute at MIT and Harvard, called it “an absolute scientific nightmare.” Dr. Thomas Insel, the former director of the National Institute of Mental Health, said that the manual had a “lack of validity” and was “at best a dictionary.” Here’s the deal: The science wasn’t there when Spitzer and company wrote the manual (and they tried to acknowledge this by leaving the manual open for revisions). Despite all the effort in the three decades since, it still isn’t there.

Many research psychiatrists I’ve interviewed liken DSM diagnoses to our understanding of headaches—we have symptoms with no knowledge of the underlying cause. You can, for example, think you have merely a headache when you in fact have a brain tumor. Pop an Advil and your headache might go away, but you’ve still got a metastasizing mass in your skull. Without a way to find that tumor, how do we tell the difference?

The most concerning part, from my perspective, is that the DSM approach rendered the practice so rigid, so fixed, that the patient, the person, the human, was lost. As I would learn, this doesn’t just affect the relationship between doctor and patient, but can increase misdiagnosis.

I had tested this out myself with Dr. Michael First, the man who introduced Spitzer and mentioned Rosenhan at the memorial lecture.

“I’m nervous,” I said as I turned on the tape recorder in First’s office. “Why am I nervous? Have you been SCIDed yourself?”

“Nope,” Dr. First said.

Dr. First is not exactly warm and fuzzy—he’s hyperclinical and a straight shooter, two things that have made him key in the creation of the last three incarnations of the DSM—but the chunky metal ring I spotted on his finger during our interview betrays what I interpret as his softer, Woodstock-hippie vibe. He is often called upon to consult in high-profile criminal cases, recently that of the murder of six-year-old Etan Patz, which ended in a hung jury (the defendant was found guilty in a second trial). But his main contribution to the DSM world is the SCID—the Structured Clinical Interview for DSM—a prewritten set of interview questions designed to make a psychiatric diagnosis based on DSM criteria. I had asked if he would be open to SCIDing me about my experience with psychosis, pretending that he didn’t know the diagnosis. Dr. First seemed open to a challenge—even if the odds were stacked against him.

In 2008 he appeared on a BBC reality show called How Mad Are You? where ten people—five “normal” and five who had been diagnosed with psychiatric conditions—lived in a house observed by a psychiatrist (Michael First), a psychologist, and a psychiatric nurse, and engaged in a variety of tasks, including performing stand-up comedy and cleaning out cow stalls. The panelists’ goal was to ferret out the mentally ill and correctly label them with only five days of observation. The panelists didn’t do such a hot job. They nailed the guy with obsessive-compulsive disorder after watching him struggle to clean up cow manure, but incorrectly diagnosed one volunteer with bipolar disorder (where no disorder existed) and one with a history of schizophrenia (there was no history). It’s worth recognizing how astonishingly deep Rosenhan’s thesis has cut: Despite all of psychiatry’s efforts to legitimize itself in the time since, the impossibility of distinguishing sanity from insanity had received the most mainstream of honors—its own reality show.

First began. “Okay, I’m going to do it straight through as if we’re doing it for real because we are doing it for real.”

He rattled off the first few questions and I answered them in quick succession: “How old are you?” “With whom do you live?” “How long have you been married?” “Where do you work?”

I explained that I had been dating my husband for seven years, but that we had met when I was seventeen. I told him about our recent marriage. He asked about work so I summarized my history at the New York Post, where I had worked for even longer than I’d known my husband.

“Have you ever had a period of time when you couldn’t work or go to school?”

“Yes,” I said. “When I was sick.”

“Tell me about the illness.”

I walked him through the natural history of my illness, starting with the funk of depression, which morphed into mania, then to psychosis, and finally to catatonia before I was accurately diagnosed with autoimmune encephalitis. He asked questions along the way but kept me on the straightest road possible. He maintained an emotional distance—never a wow or that must have been hard or even a how did that make you feel?, all common reactions among others hearing this story. He moved right along, question after prewritten question.

“Have you ever wished you were dead or would go to sleep and never wake up?” he asked.

I thought of Rosenhan’s answer to this question posed during his intake interview at Haverford Hospital. I responded no.

“Have you ever tried to kill yourself? Have you ever done anything to hurt yourself?”

No, no.

“Have you had any problems in the past month?”

“Problems?” I asked.

“Anything, like at work, home, other problems.”

“Every day I have a problem.” I laughed. What kind of question was this?

“Like everyday normal stuff?”

“Yes.”

“How has your mood been in the past month?”

“Actually pretty good,” I said. “I’ve been meditating.”

“Medicating?”

“No, meditating.”

Moving on.

An odd dynamic was occurring—I said no to all the above, but despite myself I found that I wanted to please this doctor. I didn’t want to disappoint him with my normalcy.

“In the past month, since the twentieth of March, was there a period of time when you felt depressed or down for most of the day nearly every day?” This was odd. I had just told him that my mood had been good thanks to that Headspace app. He was just reading off the page.

“In the past month, since the twentieth of March, have you lost interest or pleasure in things you usually enjoyed?”

It now felt like what I imagined a courtroom interrogation would be like—as if he was trying to catch me in a lie.

He went on to ask the same questions but extended over the course of my life. During my illness, for example, I felt depressed but a yes wasn’t enough. He wanted to know exactly how long I felt blue, as if emotions have hard edges.

“A week, that’s it?”

“Oh, I don’t know. Maybe a month? It’s so hard for me to say.”

“In the hospital were you depressed?”

“I was so cognitively impaired. People said I was, but I don’t remember.”

“How about the mania?” he continued. “How long did that last?”

“Again, it was so mixed with depression it’s hard to say.” I’m trying desperately to make something concrete out of something that just isn’t. Emotions are not mathematical formulas, inserted as x + y = psychiatric diagnosis.

“Just to recap. February 2009, three weeks most of the day every day you were depressed. Does that sound right?”

“Sure.”

He focused on the first two weeks of the depression and I played along, as if I, or frankly anyone else, could accurately respond to such prescribed questions about such an irrational, frightening time.

“How long did the mania last total: a week and a half?”

“It’s so hard to say…”

“During that week-and-a-half period, how did you feel about yourself? More self-confident than usual?”

“Sometimes. But one second I’d be the best and then the worst.”

“But certainly for a significant amount of that time you did have that feeling.”

“Sure.” It was astounding. Everything needed to be so concrete.

More questions: “Sleep? Concentration? Spending more time thinking about sex? Pacing? Buying things you couldn’t afford?” And then my favorite one: “Did you make any risky or impulsive business decisions?” This after telling him that at the time I made thirty-eight thousand dollars a year. I laughed at this one. “Oh, all those risky business investments!”

“Now I’m going to ask you about some unusual experiences,” he said, again reading. “During that time, did it seem like people were talking about you?”

“Yes. Nurses were talking about me. I could read their mind.”

“Did you have the feeling that some things on the radio or TV were especially for you?”

“Yes,” I said. “I had a whole delusion about the television and my father.”

“What about anyone going out of their way to give you a hard time or trying to hurt you?”

The yeses kept coming: “Did you ever feel like you were especially important? Had special powers?”

Of course: I vividly remembered my brief brush with godlike powers when I believed I could age people with my mind.

“Were you ever convinced that something was wrong with your physical health even though doctors told you there wasn’t?”

My obsession with bedbugs; my conviction that I was dying of melanoma.

“Were you ever convinced that your boyfriend was being unfaithful?”

The time I rummaged through his things in search of nonexistent clues to his imaginary affair.

There were specific questions about people implanting thoughts in my head, about the porousness of human interactions, about unrequited love, that didn’t fit. At the end of our interview, Dr. First closed the book.

“If I didn’t have the answer”—meaning autoimmune encephalitis—“I would have a different diagnosis. This would have been schizophreniform disorder.”

Schizophreniform is when someone exhibits features of schizophrenia for less than six months, the minimum length of time required for a schizophrenia diagnosis. (Though this minimum time length was created under the Feighner criteria, which predates the creation of the DSM-III, I suspect it was included in the DSM at least in part thanks to Rosenhan’s study. If you needed to exhibit symptoms for six months, then the pseudopatients, who were supposed to only very recently have started to hear voices, would have at least been filtered through a less definitive diagnosis.)

When I told him that the psychiatrists at the hospital offered two diagnoses, bipolar 1 and schizoaffective disorder, he reopened his book. “If you were depressed at the same time you were psychotic… That would make sense… Actually, it wouldn’t have been schizoaffective because the amount of mood wasn’t as long as the psychosis. Was there a time when you were psychotic when your mood was normal?”

I laughed here. “Can you be psychotic and your mood be normal? Is that even possible?”

“Well, yes,” he said. “I think technically it really wouldn’t be schizoaffective. Technically it’s kind of mixed. It’s hard to say. That’s the problem. You really need to know with a reasonable amount of precision…”

I couldn’t believe it. I had a more precise view of my illness than most—especially a psychiatric one—since I had spent a year writing and researching it and the past four years talking endlessly about it. I still couldn’t adequately answer his rigid questions.

“At the time, the two diagnoses that would have been most reasonable were schizophreniform and schizoaffective disorder,” he said. “But it doesn’t matter because both of those diagnoses are wrong.” He closed the booklet. It was brave and honorable to be so candid about the limitations of his creation. He continued. “We see this all the time with people with psychotic symptoms that don’t respond to antipsychotics. Is it because they really have your condition? Or that some people with bona fide schizophrenia don’t respond? Or maybe what we’re calling schizophrenia is actually many different things.”

He had dropped the formality of the interview, to my relief. “You can see how messed up this field is,” he said.

A moment of awkwardness passed before I removed my wallet. “So how much do I owe you?”

“Well, my typical price for this kind of thing is $550.”

Five hundred and fifty bucks for him to give me a misdiagnosis. I couldn’t believe it. And I don’t think he could, either.

“Do you take Amex?”