On a sunny May morning in 2012, I catch the train from New York City. As we leave Penn Station the train slowly shunts and rattles under the Hudson River before emerging onto the wasteland of industrial New Jersey. After passing for about thirty minutes through a bleak landscape of gnarled bog land and abandoned warehouses, signs of plusher suburbia begin to break through. As the train gains pace with each passing mile, the outside scene grows steadily more affluent—the houses get bigger, the cars shinier, and the landscape lusher, until, about fifty minutes later, we terminate at the pristine dénouement of Princeton University.
I am traveling to Princeton this early May morning because three years earlier Dr. Robert Spitzer had moved out here from nearby West Chester, Pennsylvania. His wife had taken a job at a local research laboratory, and Spitzer, now in his late seventies, had decided to embark upon one last adventure. They had chosen a large and comfortable house in the historic, leafy suburbs just northeast of the university, and as my taxi pulled up outside it was clear they had chosen well.
“Come on in,” said Spitzer, dressed in shorts, sandals, and a loose sports top, as he led me into the living area. “You wanna stay for lunch?”
Still reeling from my mountainous American breakfast, I struggled to say, “Sure, that’d be nice.”
“Before we do that,” said Spitzer, to my great relief, “how about we first sit down so I can tell you what you want to know.”
Once we had settled comfortably in our chairs, the first question I had for Spitzer concerned one of the other major changes he introduced into the DSM. What I did not mention in the last chapter is that a further change Spitzer introduced into the DSM, alongside creating a new checklist system and sharpening the definitions for each disorder, is that he introduced more than eighty new disorders, effectively expanding the DSM from 182 disorders (DSM-II) to 265 (DSM-III). “So what,” I asked Spitzer, “was the rationale for this huge expansion?”
“The disorders we included weren’t really new to the field,” answered Spitzer confidently. “They were mainly diagnoses that clinicians used in practice but which weren’t recognized by the DSM or the ICD. There were many examples, borderline personality disorder was one, and so was post-traumatic stress disorder. There were no categories for these disorders prior to DSM-III. By including them we gave them professional recognition.”
“So presumably,” I asked, “these disorders had been discovered in a biological sense? That’s why they were included, right?”
“‘No, not at all,” Spitzer said matter-of-factly. “There are only a handful of mental disorders in the DSM known to have a clear biological cause. These are known as the organic disorders [like epilepsy, Alzheimer’s, and Huntington’s disease]. These are few and far between.”
“So, let me get this clear,” I pressed, “there are no discovered biological causes for many of the remaining mental disorders in the DSM?”
“Not for many, for any! No biological markers have been identified.”
“Well, it is important to hear you say this,” I said to Spitzer, “because this is something most people simply don’t know. I did not know it when I started out training as a psychotherapist. Most of my patients do not know it today. And I suspect for many people reading this interview it will come as a surprise too.” [If you’re one of the surprised or skeptical, I’ll inspect this claim more thoroughly in later chapters.]
“So if there are no known biological causes,” I continued, “on what grounds do mental disorders make it into the DSM? What other evidence supports their inclusion?”
“Psychiatry is unable to depend on biological markers to justify including disorders in the DSM. So we look for other things—behavioral, psychological. We have other procedures.”
Before I discuss these “other procedures,” let me explain why you are probably surprised to hear that biological research did not guide the DSM’s expansion. This may sound strange to you because we all expect psychiatry to work much like the rest of modern, mainstream medicine. In mainstream medicine, a name will only be given to a disease after its pathological roots have been identified in the body, such as in an organ, tissue, cells, etc. With few exceptions, that is how general medicine operates: once you have discovered the physical origins of a problem, only then do you give it a name, such as cystic fibrosis, cancer, or Crohn’s disease.
But the surprising truth about psychiatry is that it largely operates in a completely opposite way. Rather, psychiatry first names a so-called mental disorder before it has identified any pathological basis in the body. So even when there is no biological evidence that a mental disorder exists, that disorder can still enter the DSM and become part of our medical culture.
Of course, understanding that psychiatry operates differently does not in and of itself mean that psychiatry’s procedures are necessarily wrong. The only way to decide this is to assess whether psychiatry’s alternative procedures are scientifically valid. To find out whether this is the case, I asked Spitzer to take me through the procedures his taskforce followed when deciding whether or not to include a new disorder. For example, if the findings of biology did not help the Taskforce to determine what disorders to include in DSM-III, then what on earth did?
“I guess our general principle,” answered Spitzer candidly, “was that if a large enough number of clinicians felt that a diagnostic concept was important in their work, then we were likely to add it as a new category. That was essentially it. It became a question of how much consensus there was to recognize and include a particular disorder.”
“So it was agreement that determined what went into the DSM?”
“That was essentially how it went, right.”
What sprang to mind at Spitzer’s revelation was the point I made in the previous chapter about agreement not constituting proof. If a group of respected theologians all agree that God exists, this does not prove that God exists. All it proves is that these theologians believe it. So in what sense is psychiatric agreement different? Why, when a committee of psychiatrists agree that a collection of behaviors and feelings point to the existence of a mental disorder, should the rest of us accept they’ve got it right?
Perhaps in the absence of having biological evidence to convince us, they can produce other kinds of evidence to assure us that their agreements were justified. In other words, what was the evidence leading the taskforce to agree that a new disorder should be included in the DSM?
2
Before coming back to Spitzer for an answer, let me first put this question to the psychologist Professor Paula J. Caplan, currently a Fellow at Harvard University’s Kennedy School and former consultant to two DSM committees. I interviewed Paula from my home in London in late April 2012, precisely because she has extensively assessed the evidence that guided many of the decisions the DSM Taskforce made.
One of the disorders she has focused on closely was called Masochistic Personality Disorder. Spitzer’s taskforce wanted to include this new disorder in the DSM for people who displayed “masochistic traits,” such as those thought to invite harsh treatment from others, or those leading people to seek out pain for enjoyment.
A crucial reason why Paula J. Caplan and other critics objected to these traits being called symptoms of a psychiatric disorder was because these traits were also said to be typical of women who were victims of violence. So it was thought this diagnosis was very dangerous, not only because it could be used in courts of law to suggest that female victims of violence were in fact bringing violence upon themselves (because they had a “masochistic personality disorder”) but also because it could be used to let perpetrators of violence off the hook—they were simply doing what these women supposedly wanted.
After much energized opposition from Caplan and other psychologists, the committee finally decided to rename “Masochistic Personality Disorder” to “Self-Defeating Personality Disorder”—or the neat SDPD. But the critics then argued that this change in name still implied that there was something “self-defeating” in these victims, something compelling them in some way to invite abuse upon themselves.
“So the change in name was not really a victory at all,” said Caplan to me, “since by renaming the disorder as SDPD nothing really had changed. The renamed disorder could still be used to claim that women victims of abuse, well, kind of asked for it.”
When Caplan made this point to Spitzer, he remained unmoved. In fact, his desire to keep SDPD was so strong it would have been understandable had the critics retreated. But they didn’t. Rather, at the last hour Caplan devised a simple plan: “I decided to scrutinize thoroughly the very research used to justify including SDPD in the DSM.” And here is what she found.
First, she discovered only two pieces of research—a remarkably small number, by anyone’s standards. But as surprising as this discovery was, when Caplan actually looked at the research she became incredulous. “It was so methodologically flawed,” said Caplan, “that it would fail an undergraduate examination. In fact, it was so full of basic errors,” Caplan continued, “that I actually decided to use it on an undergraduate exam in which I asked students to point out every conceivable methodological error, because his study had so many.”
For example, in Spitzer’s research a group of psychiatrists at only one university, who already accepted that SDPD existed, were shown some old case studies. All then unanimously agreed the patients in them had SDPD. Caplan pointed out that just because some psychiatrists at one hospital diagnosed their patients with SDPD was not proof that the disorder actually exists. Again, just because a group of people believes that an object in the sky is a UFO does not prove the object is a UFO. All it proves is that certain people believe it is. Likewise, as Caplan said, “All Spitzer’s research proves is that a group of psychiatrists working in the same institution gave the same label—rightly or wrongly—to a given set of behaviors.”17 It proves nothing more than that.
“But if you think that first piece of research was weak,” continued Caplan, “then consider the second piece. This involved sending out a questionnaire to a select number of members of the American Psychiatric Association. The questionnaire asked them whether the diagnosis SDPD should be included in the DSM. If they voted yes, then they were asked to describe what they thought the characteristics of SDPD were. If they voted no, then they were asked to return the questionnaire, blank, without any clinical data. This meant that the only data gathered about the characteristics of SDPD was data obtained from people who believed in the existence of SDPD in the first place.”
So how many psychiatrists believed SDPD to exist? How many voted yes? An official report showed that only 11 percent of those who returned the questionnaire described what they thought the characteristics of SDPD were.18 So essentially, only 11 percent voted yes, which is surely not a representative sample of the psychiatric community. But what made matters worse was that the questionnaire was also sent to many psychiatrists who already supported the diagnosis and who were deliberately screened into the study. And these psychiatrists, we can assume, made up a portion of this 11 percent.19
Caplan has therefore convincingly argued that neither piece of research justifies creating a new mental disorder. But that did not stop Spitzer, as she said, from proudly reporting in the DSM that the nature of SDPD was defined by examining the “data” from a single questionnaire—a questionnaire Spitzer claimed had been “distributed to several thousand members of the APA.”
“Spitzer does not report the methodological flaws in his research,” said Caplan incredulously, “and instead leads us to believe the creation of this disorder was based upon widespread scientific consultation and study.”
3
The reason I have discussed at length the case of SPDP is because it forces us to ask whether other disorders were included in the DSM on the basis of equally poor scientific evidence. Was this just an isolated example, or is it quite representative? To find out, I decided to read to Spitzer the following quotation, which claims that the research was not just poor for SDPD but for most of the mental disorders Spitzer’s team included. This quote comes from one of the leading lights on Spitzer’s taskforce, Dr. Theodore Millon. Here is what he said about the DSM’s construction:
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.20
Once I’d read this quote to Spitzer, I asked him whether he agreed with Millon’s statement. After a short and somewhat uncomfortable silence, Spitzer responded in a way I didn’t expect.
“Well, it’s true that for many of the disorders that were added there wasn’t a tremendous amount of research, and certainly there wasn’t research on the particular way that we defined these disorders. In the case of Millon’s quote, I think he is mainly referring to the personality disorders … But again, it is certainly true that the amount of research validating data on most psychiatric disorders is very limited indeed.”
“So you’re saying,” I asked, trying not to look shocked, “that there was little research not only supporting your inclusion of new disorders, but also supporting how these disorders should be defined?”
“There are very few disorders whose definition was a result of specific research data,” responded Spitzer. “For borderline personality disorder, there was some research that looked at different ways of defining the disorder. And we chose the definition that seemed to be the most valid. But for the other categories, rarely could you say that there was research literature supporting the definition’s validity.”
Spitzer’s admission so surprised me that I decided to check it with other members of his taskforce. So on a rainy English Monday, I called Professor Donald Klein in his New York office to ask whether he agreed with Spitzer’s account of events. Klein had been a leader on Spitzer’s taskforce and so was at the heart of everything that went on.
“Sure, we had very little in the way of data,” Klein confirmed through a crackling phone line, “so we were forced to rely on clinical consensus, which admittedly is a very poor way to do things. But it was better than anything else we had.”
“So without data to guide you,” I nudged carefully, “how was this consensus reached?”
“We thrashed it out, basically. We had a three-hour argument. There would be about twelve people sitting down at the table. Usually there was a chairperson and there was somebody taking notes. At the end of each meeting there would be a distribution of events. And at the next meeting some would agree with the inclusion, and the others would continue arguing. If people were still divided, the matter would be eventually decided by a vote.”
“A vote? Really?” I asked, trying to conceal that I hardly felt reassured.
“Sure, that is how it went.”
Renee Garfinkle, a psychologist who participated in two DSM advisory committees, also confirmed the unscientific processes by which key decisions were made. “You must understand,” Garfinkle bluntly said to me, “what I saw happening on those committees wasn’t scientific. It more resembled a group of friends trying to decide where they want to go for dinner. One person says ‘I feel like Chinese food,’ and another person says ‘no, no, I’m really more in the mood for Indian food,’ and finally, after some discussion and collaborative give and take, they all decide to go have Italian.”
Garfinkle then gave me a concrete example of how far down the scale of intellectual respectability she felt those meetings could sometimes fall. “On one occasion, I was sitting in on a taskforce meeting and there was a discussion about whether a particular behavior should be classed as a symptom of a particular disorder. As the conversation went on, to my great astonishment one taskforce member suddenly piped up, ‘Oh no, no, we can’t include that behavior as a symptom, because I do that!’ And so it was decided that that behavior would not be included because, presumably, if someone on the taskforce does it, it must be perfectly normal.”
According to other members of the taskforce, these meetings were often haphazard affairs. “Suddenly, these things would happen and there didn’t seem to be much basis for it except that someone just decided all of a sudden to run with it,” said one participant. “It seemed,” another member admitted, “that the loudest voices usually won out.”21 With no extensive data one could turn to, the outcome of taskforce decisions often depended on who in the room had the strongest personality. “But the problem with relying on consensus,” reiterated Garfinkle, “is that in the discussion some voices will just get quieter, either because they don’t want to fight or because they see they’re in the minority. And snap, that’s when the decision is made.”
Admittedly, when the taskforce lacked expertise on a particular disorder, Spitzer would consult the relevant leaders in the field. But this also led to chaotic meetings that members often found difficult to participate in. One of the only British members on the taskforce, a psychiatrist called David Shaffer, recalled how such meetings often unfolded. “[In these] meetings of the so-called experts or advisers, people would be standing and sitting and moving around. People would talk on top of each other. But Bob would be too busy typing notes to chair the meeting in an orderly way.”22
In an article for The New Yorker, Alix Spiegel recounts how two new disorders (“factitious disorder” and “brief reactive psychosis”) made it into the DSM through such disorderly consultations:
Roger Peele and Paul Luisada, psychiatrists at St. Elizabeth’s Hospital in Washington, D.C., wrote a paper in which they used the term “hysterical psychoses” to describe the behavior of two kinds of patients they had observed: those who suffered from extremely short episodes of delusion and hallucination after a major traumatic event, and those who felt compelled to show up in an emergency room even though they had no genuine physical or psychological problems. Spitzer read the paper and asked Peele and Luisada if he could come to Washington to meet them.
During a forty-minute conversation, the three decided that “hysterical psychoses” should really be divided into two disorders. Short episodes of delusion and hallucination would be labeled “brief reactive psychosis,” and the tendency to show up in an emergency room without authentic cause would be called “factitious disorder.”
“Then Bob asked for a typewriter,” Peele says. To Peele’s surprise, Spitzer drafted the definitions on the spot. “He banged out criteria sets for factitious disorder and for brief reactive psychosis, and it struck me that this was a productive fellow! He comes in to talk about an issue and walks away with diagnostic criteria for two different mental disorders!” Both factitious disorder and brief reactive psychosis were included in the DSM-III with only minor adjustments.23
What is striking about the construction of the DSM is that the procedures it followed often had very little to do with “science” as most people understand the term. Because the data and research were lacking to guide what disorders should be included and how they should be defined, all the taskforce could largely rely upon was professional agreement, consensus, and, in the event of continued disagreement, majority opinion attained by a vote. The problem here is obvious.
When a group of scientists sit down to decide whether something is true, they consult the evidence. If the evidence points to a clear conclusion, then irrespective of whether an individual scientist likes it, the result has to be accepted. That is how science works. The evidence is king. But when you don’t have evidence to decide the issue for you, people’s opinions, beliefs, hopes, and prejudices begin to intrude. In this instance, the scientist who desires a particular conclusion suddenly speaks up, argues loudly, and may, through sheer force of character, have his preferences accepted.
When objective science is lacking, subjective inclination steps in. When there is no evidence to guide me, it can easily become largely a matter of personal or professional preference whether I vote this way or that. Voting, in other words, is not a scientific activity. It is a cultural activity. People vote for class presidents, union leaders, political parties, and a host of other things. And yes, sometimes their votes are vindicated, but often they are not. Votes can disappoint. This is because a vote is not a guarantee that the thing voted for is real or true or good or certain. Votes are at best informed guesses, and at worst punts in the dark; so when anything is voted into existence, whether it be a new leader, a political policy, or, indeed, a new mental disorder, the likelihood that we have got it wrong is never far away.
4
As soon as Spitzer’s DSM-III was published in 1980, it became a sensation overnight. The almost 500-page-long manual sold out immediately. The publisher of the DSM, the American Psychiatric Association, was taken completely off guard. It took approximately six months to catch up with the orders that came flooding in. The new manual was purchased not only by psychiatrists but by nurses, social workers, lawyers, psychologists—by anyone with any connection to psychiatry.24
The enthusiasm quickly spread far beyond the United States. In Britain, for example, the manual had such impact that by the end of the 1980s most British psychiatrists were being trained to use the DSM.25 Furthermore, Spitzer’s DSMcategories quickly became those that guided all research into psychiatric disorders internationally. This meant that the disorders studied by researchers in Germany, Australia, Canada, Britain, India, and so on, were those defined and listed in Spitzer’s DSM. In short, the book ultimately changed the fundamental nature of research and practice within the field, not to mention the lives of tens of millions of people diagnosed with the psychiatric disorders listed therein.
And yet, even as the influence of the manual spread, the truth about its construction remained obscure. Most professionals using the manual simply did not know (and still do not know today) the extent to which biological evidence or solid research failed to guide the choices the taskforce made. They did not know that the definitions of the disorders contrived, the validity of the disorders included, and the symptom thresholds people must meet to receive the diagnosis were not decided by serious scientific evidence but were the product of committee decisions which, at best, reflected the well-meaning professional opinions of a small subset of psychiatrists.
In short, most people did not know that the fundamental changes Spitzer brought to global psychiatry only required the consensus of an extremely small group of people. Indeed, as Spitzer openly confirmed to me in our interview, “Our team was certainly not typical of the psychiatry community, and that was one of the major arguments against DSM-III: it allowed a small group with a particular viewpoint to take over psychiatry and change it in a fundamental way.”
“What did you make of that criticism?” I asked him.
“What did I think of that charge? Well, it was absolutely true! It was a revolution, that’s what it was. We took over because we had the power.”
Within a couple of years, this powerful few had established for a whole new generation where the thin membrane separating psychiatric disorder from the ordinary troubles of life should be set. They had also created and defined approximately eighty new mental disorders, which very quickly became household names or, for many, established disease realities. Disorders like Post-Traumatic Stress Disorder, Major Depression, Social Phobia, Borderline Personality Disorder, and so on, gradually became as real and solid in the popular imagination as tonsillitis, shingles, or the common cold. And all the while, the truth about the processes going on behind the scenes remained carefully hidden—processes which, as the next chapter will show, have dramatically increased the number of us today being branded psychiatrically unwell.
5
On the evening of my interview with Robert Spitzer, I decided to take a walk through Princeton’s pristine university campus before meeting an old friend for drinks. It was a joy to be walking in the warm evening air, as only days earlier I had flown in from London and one of the wettest Aprils since records began. In contrast, Princeton was positively Mediterranean, and I couldn’t believe my luck. So after walking a while I sat down on a bench, stretched out my legs still heavy with jet lag, and looked up contentedly at the dust of stars beginning to illuminate the night sky. And it was at that moment, on that bench, that a crucial realization dawned.
It started by my recalling something Paula J. Caplan had mentioned to me days earlier. “Mental disorders,” she had said, “are nothing more than constellations.” At the time I’d not given the comment much thought, but now, after having spoken to Spitzer, her analogy seemed perfect.
Just think about it. As far back as historical records go, we have tried to order this chaos of sparkling orbs into meaningful patterns or configurations, drawing lines between individual stars to create the constellations we know from our schoolbooks: Orion, Leo, Apus, and Aquarius. Most other cultures have also engaged in this astrological map making; Hindu, Chinese, Inca, and Australian Aboriginal have all forged their unique celestial maps. This is why when someone from Bangalore or Sichuan looks up at the very same night sky as you, she identifies different constellations. Her culture has taught her to read the sky differently. She sees her own, not your, astral designs.
And that’s why Caplan’s analogy now made so much sense to me: mental disorders are also man-made maps. Maps linking up our separate feelings and behaviors like astrologers do the galactic stars. One star characterizes sleeplessness, another a visual hallucination, another a constant tick, a violent outburst, or sexual lethargy. And when these separate items are joined with lines, a new pattern—a new disorder—is forged.
Viewed from this standpoint, the DSM committee did not actually discover mental disorders, at least not in any traditional scientific sense. Rather, they literally contrived them, by drawing lines between painful, emotional experiences. One disorder linked up fear, panic, and uncontrolled bouts of anxiety (this would be called Specific Phobia); another disorder linked up low self-esteem, lethargy, and a low capacity for pleasure (and this would be called Dysthymia). And so it went until hundreds of separate patterns had all been given individual names: major depressive disorder, self-defeating personality disorder, oppositional defiant disorder, somatization disorder, and so on.
Looked at in this way, and as will become clearer in later chapters, mental disorders aren’t therefore waiting to be discovered, like molecules or bacteria. They are much like man-made constellations which are imposed upon the night sky. Sometimes these map-makers draw patterns that make sense, but sometimes they do not, and sometimes they make mistakes so dramatic that it’s hard to put things right again.
As I stood in Princeton that balmy evening, I knew that I now must explore what happens when mistakes are made. What happens when human traits are linked up into configurations that you and I would not recognize as psychiatric disease? And if the constellations increase in number, is there a danger they will begin to colonize so much of our emotional landscape that little remains which can be called normal? This was a question I now knew I had to pursue in my next set of interviews.