This article was adapted from Schizophrenia: An Unfinished History, by Orna Ophir, out July 26 from Polity.
In This Stranger, My Son, her 1968 memoir, Louise Wilson tells the story of her family’s struggles with mental illness. She recalls that when her son, Tony, was discharged from the hospital, her husband, a surgeon, who had had enough of hearing conflicting reports, asked for a “real diagnosis.” The psychiatrist treating Tony replied: “Schizophrenia, if you want to label it. The boy is a paranoid schizophrenic.” But, he added, schizophrenia was just a word covering a large, loose category: “it’s like saying ‘tree.’ There are all kinds—firs, elms, pines. So, there are many kinds and degrees of schizophrenia.” Shocked, Louise echoed the words: “schizophrenia, if you want a label,” while thinking of her son’s dark blue eyes, his beautiful, rare smile, but also about the “ugly contortions of his rage,” his terror and fear.
What was this strange phenomenon of Tony’s illness? Was schizophrenia merely a “loose category,” just a “label,” a “word”? But also, did it name a natural phenomenon, like a “tree”? Did schizophrenia have many kinds? Could it have many degrees?
Swiss psychiatrist Paul Eugen Bleuler introduced schizophrenia, often considered the “most troubling” form of madness, as a medical classification in 1908 to replace the label “dementia praecox,” meaning the incurable madness of young people. He coined it as a diagnosis to describe patients who suffered a disintegration of the mind (“skhizein” meaning to split and “phren” connoting mind), a century after the German physician Johann Christian Reil introduced the word psychiatry as part of his call for the establishment of a specific subdivision of medicine to treat mental illnesses. Ever since, psychiatrists have been engaged in a collective effort to classify—that is, identify, name, describe, and treat—such psychological ailments. But, unlike the successes in classifying minerals, plants, and animals, it was soon clear that when it comes to mental illnesses, classification is a difficult task. Indeed, the combination of body and soul does not always follow the same patterns as the rest of the natural world. Thus, “paranoid schizophrenia” cannot be traced back to “schizophrenia” or the “schizophrenia spectrum” in the same way that “American elm” falls under the genus of “ulmus/elm.”
Yet, it seems that we cannot give up psychiatric classifications. The use of diagnoses in psychiatry serves many bureaucratic needs (including keeping records, setting up reimbursements, coordinating between professionals and institutions), but it also serves emotional necessity, offering patients and their families some clarity where uncertainty and anxiety prevailed. Patients want to know what is “wrong” with them, and some individuals report feeling less guilty for their inability to overcome their problems once they receive a diagnosis. Tony’s psychiatrist and present-day clinicians understand this diagnostic end goal. The trouble is that clinical classifications, while on shaky grounds, tend to become “real,” with the consequence that physicians and psychiatrists keep using categories of mental illnesses even when doubtful of their fundamental validity.
We have never had an objective test for “schizophrenia,” and according to Canadian philosopher Ian Hacking, the phenomenon we are trying to diagnose is a “moving target.” Hacking argues that the human sciences are not necessarily revealing new illnesses that are then given names; instead, they are driven by “engines of discovery” and involve a process of “making up people.” By counting people (1 per 100 people in America suffers from schizophrenia); quantifying them (age of onset before 45, duration of psychotic symptoms longer than a month); creating norms (what is a normal perception, normal memory, normal daily function); correlating data about them (a common estimate is that 10 percent of those diagnosed with schizophrenia die by suicide); and in addition, by medicalizing, biologizing, geneticizing, and bureaucratizing individuals, new kinds of patients are made.* When “autistics,” “hoarders,” “the obese,” or “paranoid schizophrenics” emerge as new subjects, so do new types of experts identifying, assessing, and treating them.
In the first edition of the Diagnostic and Statistical Manual of Mental Disorders, published in 1952, schizophrenia was understood as a reaction to stressful life events. It was seen as a group of disorders that were named “schizophrenic reactions.” In 1968, when the second edition of the manual was published, the word “reaction” disappeared. Though the authors of DSM-II believed that nothing new had been discovered about the nature of the disorder, they “made up” 15 different types of schizophrenia, which allowed for the American classification system to align with the International Classification of Diseases, produced by the World Health Organization, which specified similar subtypes. By 1980, when the third edition of the American manual was released, the number of these subtypes shrank significantly, and each was characterized by a specific manifestation of symptoms. If schizophrenia was the “tree,” to return to Tony’s psychiatrist’s metaphor, these various types were the “firs, elms, and pines.” Thus, while all schizophrenias shared some features such as delusions, hallucinations, disturbed affect, and disorganized behavior and speech (just as trees share roots, trunks, branches, and leaves), these different subtypes had additional unique characteristics in common. The main subtypes the DSM introduced were “disorganized schizophrenia,” characterized by a lack of a specific delusion, as well as by disorganized behavior and nonsensical speech, together with flat, silly, or inappropriate emotional responses; “catatonic schizophrenia,” which was the label given to those with a clear disturbance in psychomotor activity that was manifested in either excited but aimless movements, or a decrease in motoric activity and even stupor; and, finally, “paranoid schizophrenia,” a diagnosis given to a clinical picture that was dominated by delusions of persecution, grandiosity, jealousy, or all of the above.
While in the late 1960s, Tony could have been diagnosed with “schizophrenia – paranoid type” coded 295.3 by DSM-II, this diagnosis is no longer offered by the latest version of the manual, which we use today (DSM-5, 2013, or with its recent revision DSM-5-TR, 2022). Together with all other categories of schizophrenia mentioned above, this diagnosis became obsolete and instead a “schizophrenia spectrum” is now the diagnosis of choice for similar conditions. Does this mean that there are no longer any “paranoid schizophrenics” among us? Are there no more people who experience persecutory or grandiose delusions, hallucinations, and at times excessive religiosity, hostility and aggression? Have these individuals changed their nature? Or, has psychiatry merely changed its way of classifying disturbances in human psychological behavior?
During the past two decades, psychiatry has attempted to move from carving out categories of mental illness to delineating spectra of these disorders. Among these, the autism spectrum was the first to be popularized. It seems that this shift from a qualitative categorical diagnosis (based on descriptive symptoms) to a spectrum-like, dimensional classification (based on biological or psychological gliding scales from normal to pathological functioning) might bring a very literal end to many known disorders, schizophrenia to begin with.
In fact, these two opposing ways of understanding mental illness have framed our perception since antiquity. The first characterizes abnormal mental states and behaviors as different in kind from normal ones, just as elm trees are different from pine trees, and trees, more generally, are different from minerals or animals. The second defines the difference between normal and disordered states as one of degree, placing them on a spectrum, in the same way that in medicine, hypertension is different from hypotension. Over time, the latter paradigm became the more prevalent. Even seemingly obvious natural categories, such as life and death, are now challenged and placed on a spectrum.
As human beings and scientists, we can think about phenomena in terms of categories and continuities. The distinction between light “particles” and “waves,” discovered by 20th-century quantum mechanics, is a case in point. Just as the particle-wave duality necessitated revisions in the understanding of the basic concepts and fundamental methods of theoretical physics, the revolution in psychiatric classification seems to bring with it the end of the fixed and fateful category of schizophrenia.
Still, most clinicians agree that some individuals do experience delusions, hallucinations, and disorganized speech that make them sound irrational. They attest that they have seen individuals who clearly exhibit disorganized or catatonic behavior, flat affect, or the failure to maintain basic self-care. Yet a growing number of psychiatrists maintain that, as a presumed disease entity, as an identifiable state, with clear subtypes, schizophrenia simply does not “exist.” Some consider schizophrenia no more than an “end stage” of other untreated mental disorders (in the same way that heart failure is the terminal stage of various heart diseases); others propose to abolish the diagnosis altogether.
These psychiatrists, psychologists, social activists, survivors, ex-patients, and others have argued that the label “schizophrenic” is stigmatizing. Schizophrenia is associated with hopelessness, chronicity, and even danger, and being labeled with it is as harmful as the condition the term aims to classify. This change has happened in some countries. In 2002, the Japanese Society of Psychiatry and Neurology replaced the word for schizophrenia, Seishin-Bunretsu-Byo (“mind-split disease”) with integration disorder, or Togo-Shitcho-Sho. While the first was considered hopeless, the second envisioned a condition from which one could recover, if properly treated. Similarly, South Korea adopted the name “attunement disorder” in 2011, and in Taiwan the “S-word” was renamed a year later as “dysregulation of thought and perception.” In European countries, further alternatives were offered in professional journals that included “Bleuler disorder” (just as Parkinson’s or Down syndrome were named after the doctors who first described these conditions), “neuro-emotional integration disorder,” or “psychosis susceptibility syndrome,” a label suggested by the Dutch Anoikis Patient Association.
Given that psychiatry lacks a clear measure for most of its conditions, the Danish philosopher of science Anke Bueter has recommended that patients’ knowledge should be taken into consideration when revising and renaming their diagnoses. After all, they are the ones who must live with the label. Elyn Saks noted in her memoir The Center Cannot Hold that the diagnosis of schizophrenia feels more “like a death sentence than a medical diagnosis.” If that is true—and we must listen to the patients—then doctors who are trained to “first, do no harm” would be wise and do well to reconsider using it.
Correction, July 28, 2022: This article originally misstated that people with schizophrenia are 10 percent more likely to die by suicide. A common estimate is that 10 percent of those diagnosed with schizophrenia die by suicide.
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