The Collected Schizophrenias Page 2
Though Bleuler’s coinage is his most enduring legacy, he also went on to conduct the bulk of pioneering work on schizophrenia, including the seminal monograph Dementia Praecox, or The Group of Schizophrenias. As Victor Peralta and Manuel J. Cuesta describe in “Eugen Bleuler and the Schizophrenias: 100 Years After” (Schizophrenia Bulletin), Bleuler conceived of schizophrenias as a “genus rather than a species.” As a concept, the schizophrenias encompass a range of psychotic disorders, and it is a genus that I choose to identify with as a woman whose diagnosis is unfamiliar to most—the shaggy, sharp-toothed thing, and not the wolf.
The DSM is published by the APA, which released its long-awaited, updated “bible for mental disorders,” the DSM-5, in May 2013. Updates to the DSM aren’t set like clockwork; after all, the DSM-IV wasn’t released until 1994, and the DSM-III, which infamously contained the diagnosis of “ego-dystonic homosexuality,” came out in 1980. I’m not a psychiatrist, psychologist, or therapist, but I am a patient whose life is affected by the labels that the DSM provides, and so I was curious to see what, other than the switch from roman to arabic numerals, would change. After all, it is easy to forget that psychiatric diagnoses are human constructs, and not handed down from an all-knowing God on stone tablets; to “have schizophrenia” is to fit an assemblage of symptoms, which are listed in a purple book made by humans.
With the arrival of the DSM-5 came the psychiatric bible’s most significant change: not the actual diagnoses within the DSM, nor the symptoms that make up the diagnoses, but rather the idea of defining psychiatry itself. NIMH, a component of the US Department of Health and Human Services—immortalized by the 1982 animated movie The Secret of NIMH, which depicts the organization as a sinister and unethical entity—shifted the landscape by decreeing that the DSM is “no longer sufficient for researchers,” according to NIMH director Thomas Insel. No longer would the APA and NIMH stand together in a uniform discussion of “what psychiatry is”; rather, NIMH declared that it was, and had been, striking out on its own.
Psychiatry emphasizes a clinician’s judgment as the primary tool for diagnosis. Someone suffering from mental health complaints may first be given a blood test or a brain scan by a primary care physician. If those tests come back clean, it’s the psychiatrist’s role to ask questions intended to suss out whether the sick person qualifies for one of the hundreds of diagnoses delineated by the DSM, all of which rely on groups of symptoms and sighted or self-reported patterns. (The disorders are indexed with decimal numbers, making the endeavor seem even more capital-S Scientific. I spent much of my adolescence squinting at the numbers on my charts, trying to memorize them so that I could look them up later. Schizophrenia is 295.90; my diagnosis of schizoaffective disorder, bipolar type is 295.70 [F25.0].) Humans are the arbiters of which diagnoses are given to other humans—who are, in most cases, suffering, and at the mercy of doctors whose diagnostic decisions hold great power. Giving someone a diagnosis of schizophrenia will impact how they see themselves. It will change how they interact with friends and family. The diagnosis will affect how they are seen by the medical community, the legal system, the Transportation Security Administration, and so on.
The most common complaint about the DSM-5, and the DSM versions that came before it, is that the disorders it lists are based on clusters of symptoms rather than objective measures. I realized just how arbitrary such definitions are in practice while working as a lab manager at the Stanford Department of Psychology, where I ran clinical interviews to assess potential subjects for study. At the time, Stanford’s Mood and Anxiety Disorders Laboratory relied on the Structured Clinical Interview for DSM-IV, or SCID, to determine whether someone qualified for the diagnosis we were trying to research. I went through a year of training, including months of practicing phone interviews, taking a written test, running through a battery of simulated interviews with coworkers, and supervision during several official interviews, until I was qualified to run the two-to three-hour-long SCIDs alone.
To “run a SCID” means taking a potential subject through a battery of questions taken from the SCID binder—a hefty stack of paper with a spine several inches wide. The interview begins by collecting preliminary demographic information, and goes on to run a person through a diagnostic flowchart. For example, “Did you ever hear things that other people couldn’t hear, such as noises, or the voices of people whispering or talking? Were you awake at the time?” moves on to “What did you hear? How often did you hear it?” if the answer is yes. If the answer is no, the next question becomes “Did you ever have visions or see things that other people couldn’t see? Were you awake at the time? How long were they present?” At the end of the interview, the researcher determines the interviewee’s primary diagnosis, and writes it on the front in ink.
In our lab, running SCIDs was not only the most prestigious task an employee could do but also the most emotionally draining. Running a single SCID often meant listening to a litany of someone’s most excruciating experiences and memories. We were not permitted to cry during these interviews, but I often bit back tears during the most intense of them. It was frustrating to see inter viewees come in and reveal an underbelly of bloody wounds, only to have to turn them away from participating in the experiments for which they’d applied, and often for what seemed like insignificant reasons. An Eeyore-esque man who wept at random and clearly seemed depressed could be eliminated from our “major depressive disorder” (MDD) subject pool for not meeting the full criteria. According to the DSM-IV, he would need to meet five or more of a list of nine symptoms—including fatigue or loss of energy, weight loss or gain, or feelings of worthlessness—for most of the time during the same two-week period. At least one of the symptoms would have to be a depressed mood, or a loss of interest or pleasure (known as anhedonia). If the depressed person had only four of the nine symptoms, or came into our office at the one-and-a-half-week mark, he would be recorded as “sub-MDD,” because it was not a therapeutic clinic but a research lab, where our subjects needed to be as “clean” as possible—and doing hundreds, if not thousands, of interviews made it clear to me that diagnoses were rarely cut-and-dried.
As a researcher, I lacked the luxury of being able to bend criteria. However, psychiatrists can, given that their job is to ameliorate symptoms and the suffering that accompanies them, rather than to find, diagnose, and study spotless instances of any given disorder. A psychiatrist attempting to make a diagnosis might go through a flowchart similar to the one that the SCID comprises. They might ask, using plainspoken language, the same questions found in the weighty binders I carried from the interview room to the main office; but someone that I would have labeled “sub-MDD” would likely be diagnosed by a psychiatrist as clinically depressed, with a Prozac prescription not far behind. Clinical flexibility has its benefits. It also has the potential for human error, as well as the ability to harm.
With the advent of new technologies and genetic research, psychiatry is increasingly turning toward biology, with NIMH leading the charge. In a press release about the DSM-5, published on April 29, 2013, NIMH spoke about the so-called weakness of the DSM’s categorizations made via observed or reported clusters of symptoms, announcing that “patients with mental disorders deserve better.” Simultaneously, NIMH promoted its own project—a surprise to those outside of the scientific community—called the Research Domain Criteria project, or RDoC. RDoC’s aim, according to the 2008 NIMH Strategic Plan, is to “develop, for research purposes, new ways of classifying mental disorders based on dimensions of observable behavior and neurobiological measures.” In other words: let’s bring more hard science to psychiatry.
Identical twins, according to seminal twin studies in the 1960s, have only a 40 to 50 percent chance of both developing schizophrenia, despite their shared genes. According to the diathesis-stress model of psychiatric illness, a genetic vulnerability to a disorder blooms only if enough stressors cause those vulnerable genes to express themselves. When I worked as a lab manager, we researchers spoke of the possibility that our studies might one day bear practical fruit. Someday we might be able to inform parents of their children’s genetic risk for mental illness, and those parents might be able to employ preventive measures before the first signs made themselves apparent. We did not discuss the practicalities or ethics of taking such action.
Some stressors appear to be prenatal. People diagnosed with schizophrenia are more likely to be born in the winter than in the summer, perhaps due to maternal infection during pregnancy—I was born in the swelter of a Midwestern June. Difficult births, obstetrical complications, and stressful events suffered by the mother, such as assault and war, are also correlated. My head had lodged behind a bone in my mother’s pelvis, which hints of an intergenerational transmission of trauma; stress causes the flooding of cortisol and other chemicals into the brain, and my newly immigrated, newly married young mother had her own psychiatric issues to contend with. Who knows what happens to the malleable and muddy assortment of fetal cells because of such strain?
Once during a train ride in Taiwan with my mother, I asked her about my great-aunt, who I knew had been insane. On the small, pull-down lap desk, my mother placed a notebook and sketched a family tree. She drew X’s to signify those known to have some sort of mental illness. What surprised me weren’t so much the three X’s that did exist—the great-aunt who’d been institutionalized for most of her life, despite having been a first-generation college student, and who lived a tragic existence as the madwoman in the attic; my mother’s cousin who had killed himself, ostensibly after a bad breakup; and, of course, me—but rather how many unknown entities there were, with branches leading to blank spaces on the page. “No one talks about these things,” she said. “No one wants to question what genetic legacies might lurk in our bloodline.” When asked point-blank by my first psychiatrist, over a decade ago, whether there was mental illness in the family, my mother said no, there was nothing. Even now, she doesn’t consider herself an X on the family tree, preferring to keep herself a mild circle, absolved on the page despite her own history of suicidal ideation, panic, and hiding in closets. My father’s side of the family has other concerns, primarily addiction, but is not considered responsible for my so-called bad genes. I’ve inherited a love of writing and a talent for the visual arts from my mother, as well as her long and tapered fingers; I’ve also inherited a tendency for madness.
The APA’s response to this ill-timed potshot from NIMH came in the form of a statement from the chair of the DSM-5 Task Force, David Kupfer. Kupfer publicly responded that RDoC “may someday … revolutionize our field,” but added that people with mental illness are suffering in the present moment. Having biological and genetic markers as diagnostic tools would be wonderful, but “this promise, which we had anticipated since the 1970s, remains disappointingly distant …. [The DSM-5] represents the strongest system currently available for classifying disorders.” Speaking directly to the urgency of public need, Kupfer said, “Our patients deserve no less.”
What is perhaps most interesting about the RDoC announcement, however, is just how complex an RDoC-DSM marriage might become—and it’s a problem that researchers are working on solving. Dr. Sheri Johnson, professor of psychology at the University of California, Berkeley, said to me, “I think we are a long way away from that marriage. RDoC is a fascinating initiative, but it’s really designed to help us understand some of the key neurobiological dimensions involved in mental health. There’s a lot of work to be done … Once we have those dimensions more clearly mapped, it may shift the way we think about diagnosis enough that we won’t really be using the same types of categories that appear in [the] DSM.”
Dr. Victor Reus, a professor of psychiatry at the University of California, San Francisco, and psychiatrist, is similarly skeptical about the use of biomarkers as diagnostic or clinical tools—at least until genetic research grows by leaps and bounds. “I think trying to do biomarkers of schizophrenia as an entity is probably a hopeless task,” Reus told me in an interview, “because there are just so many different ways in which people can develop a syndrome that looks like schizophrenia, or that fulfills the criteria of schizophrenia as we now define it.” And yet this may not be the case for other disorders. “Certain categories,” Reus states, “as crude as they are, are still useful in capturing a group of individuals that probably have more in common in terms of etiology or basic mechanism than they are different. And certain disorders are better than others in that regard. So autism has proven to be a pretty useful thing. Bipolar disorder has proven to be, I think, more useful than schizophrenia. Obsessive-compulsive disorder is probably one of the more specific ones. Major depression is problematic. Generalized anxiety dis order is very problematic.”
As of 2017, NIMH continues to vigorously fund research into the schizophrenias. The 2017 NIMH budget describes an increase of $6 million (up to a total of $15.5 million) for programs designed to address psychosis and its treatment; the goal of initiatives such as Recovery After an Initial Schizophrenia Episode (RAISE) and the Early Psychosis Intervention Network (EPINET) is to “ensure that lessons learned from research and clinical experiences are systematically and rapidly put to use to improve [lives].”
For now, psychiatrists continue to rely on the DSM, and on the DSM-5, which means that changes in the bible of psychiatry continue to affect people’s lives. The definition of “schizophrenia” changed with the DSM-5. Schizophrenia’s subtypes—paranoid, disorganized, catatonic, and undifferentiated—no longer exist in the new DSM, which means, among other things, that pop culture has lost “paranoid schizophrenia” as a diagnosis upon which to hang criminal acts. The five key symptoms are listed as: (1) delusions, (2) hallucinations, (3) disorganized speech, (4) disorganized or catatonic behavior, and (5) “negative” symptoms (symptoms that detract, such as avolition). A person must now demonstrate at least two of the specified symptoms; previously, only one symptom was required. At least one “positive” symptom—delusions, hallucinations, disorganized speech—must be present.
Schizoaffective disorder changed as well. When I first heard that its criteria had been altered, my nerves twitched—had my diagnosis been erased? If the diagnosis hadn’t been erased, would my association with it be, if I no longer fit the criteria? But as I skimmed “Highlights of Changes from DSM-IV-TR to DSM-5,” a PDF created by the APA to accompany the DSM-5’s release, I realized that I still fit the mold. According to the document, “The primary change to schizoaffective disorder is the requirement that a major mood episode be present for a majority of the disorder’s total duration after Criteria A has been met” (italics mine).
In “Schizoaffective Disorder in the DSM-5,” Dolores Malaspina et al. explain these changes by pointing out that psychotic symptoms and mood episodes frequently happen at the same time. A person with bipolar disorder may experience psychosis during a manic or depressive episode; a person with major depression may experience psychosis during their depression. As a result, schizoaffective disorder was diagnosed more often than warranted for a diagnostic category that “was originally intended to [only] rarely [be] needed.”
The new DSM definition of schizoaffective disorder is intended to look at a lifetime of illness, and not an episode of illness; a longitudinal look at schizoaffective disorder means that there must be at least one two-week period of psychosis without clinical mood symptoms, and full mood disorder episodes must have been present “from the onset of psychotic symptoms up until the current diagnosis.” In other words, schizoaffective disorder is intended to be an uncommon diagnosis, and it is meant to be diagnosed based on a lifetime of illness—both of which will be true if the DSM-5 does its job. Under its auspices, I remain a rare bird who, according to the APA, will likely be sick forever. The DSM is what we use to define the problem, yes, but it attempts to do so in a way that accommodates humanity’s wide and nuanced spectrum, which may not be a realistic goal. If I were still a researcher studying DSM-IV or DSM-5 categories, grant proposals to NIMH would need to include something about the implications for RDoC. However, NIMH’s public rejection of the DSM-5 has no impact on me as a layperson, or on my insurance company, my therapist, or my psychiatrist. And although blood tests or brain scans for mental illness diagnoses are either far-off or never to come, RDoC’s first benefits may give us a better sense of what biological features mark susceptibility to already established disorders, as well as what types of stressors are most likely to transform those susceptibilities into illness.
I remain skeptical that we’ll see either outcome in my lifetime. I am accustomed to the world of the DSM, which remains the heavy purple bible-o’-madness that sits on a clinician’s shelf. It is, like the Judeo-Christian bible, one that warps and mutates as quickly as our culture does. The DSM defines problems so that we can determine whether a person fits into them, or whether a person has lapsed out of the problem entirely—which is not to say that their life changes, even if their label does.