Should the Diagnostic Label “Schizophrenia” Be Changed?
A growing movement argues that doing so would reduce stigma.
Posted Sep 12, 2018
As children, many of us were taught that “names” could never hurt us, but as adults we realized that the truth is more complicated. Labels can impact the people that they are given to depending on the social meanings that are attached to them. Applying a label to a person can initiate a set of interconnected assumptions that fundamentally alter the way they are viewed. In the study of stigma, we know that labels that are linked to negative stereotypes impact how others evaluate one’s behavior, as well as one views oneself.
When we think of maligning labels, or “slurs,” we tend to think of colloquial terms, such as the “n-word,” but many slurs have a technical origin. The terms moron, imbecile and idiot, for example, were all originally technical terms for ranges of below-average IQ. More recently, it was determined that the clinical term “mentally retarded” had become a slur, and as a result, in 2013 it was replaced with the term “intellectually disabled” in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM), and other official documents within the U.S. Removing a term that has become a slur from the technical lexicon does not eliminate its use, but at least it can reduce the likelihood that someone will see it as legitimate, given its official sanction. Imagine, for example, how someone would be impacted if they were told that their official clinical label was “moron,” given the insulting connotations that the term has in everyday usage.
The status of the term schizophrenia has recently been similarly questioned. The term was originally coined by Swiss psychiatrist Eugen Bleuler in approximately 1908, drawing from Greek terms to mean “split mind” (although, interestingly, “phreno” has a more complicated meaning in Greek and also refers to the body’s midsection). He chose the name to refer to what he admitted were a heterogeneous constellation of symptoms that were often presented by people experiencing emotional difficulties, including delusions, hallucinations, confused thoughts, and social withdrawal. The name has continued to be used in most of the world for over 100 years.
Recent criticism of the use of the term has centered on two issues. First, there is the body of research that indicates that what is called schizophrenia has a diverse range of presentations that might more accurately be considered a group of separate syndromes. Using a single term to refer to these diverse syndromes can lead to a number of problems, including inappropriate assumptions about prognosis and appropriate treatment. It therefore might be more appropriate to develop a group of new labels that refer more precisely to the specific syndromes. I once worked with a psychiatrist who stated that a particularly client he was responsible for treating could not be diagnosed with schizophrenia because he lacked “negative symptoms” (a group of symptoms that only occur among a subset of people with the diagnosis). He also asserted that schizophrenia occurred “when the frontal lobe shuts down,” again, an inappropriate statement based on overgeneralizing from research findings with a subset of people who meet criteria for schizophrenia. While we perhaps can’t blame the diagnostic term schizophrenia for this psychiatrist’s uninformed statements, we can at least hope the use of a set of more specific terms might reduce the likelihood that they would be made.
The second, and more fundamental, criticism of the term schizophrenia, however, is that it, like “mentally retarded,” is so linked to negative stereotypes that it has in effect become a slur. Here, evidence comes from research (by Roland Imhoff and others) indicating that responses to people with the label “schizophrenia” are markedly worse than responses to people who are identically described as presenting with the symptoms of the disorder but without the label. Further, in a comprehensive study of how people perceive a range of stigmatized statuses, researcher John Pachankis and colleagues found that the label “schizophrenia” was perceived by members of the general public as carrying risk of “peril” comparable to that of people with criminal records and active drug dependency. Interestingly, perceptions of “peril” were considerably lower for the label “bipolar disorder,” which presents very similar symptoms but is a label that nevertheless carries less negative connotations.
A window into what might happen if the name schizophrenia were changed comes from Japan. In Japan, the official term for schizophrenia was changed in 2002 from “Seishin-Bunretsu-Byo’’ (translated as mind-split disease) to ‘‘Togo-Shitcho-Sho’’ (translated as integration disorder) as a way to reduce stigma. Research on whether the name change has indeed succeeded in diminishing stigma toward labeled individuals suggests that it has, although negative stereotypes still persist to some extent. In a comprehensive consideration of the Japanese example, as well as similar changes made in South Korea and Hong Kong, researchers Antonio Lasalvia and colleagues have concluded that the benefits of changing the name from schizophrenia to another term would outweigh the costs.
Of course, even if the name schizophrenia were changed, the negative stereotypes attached to it might be carried along to the new term. I don’t feel that there is anything inherently wrong with the word schizophrenia, any more than there is an inherent negativity to any word, and I will admit to having some attachment to it from years of usage. The question is whether the term has become irreparably tainted in how it is understood by the general public from its link to negative stereotypes. I have come around to agreeing that it has, and that the field might be more usefully served by a new term, or set of terms, that do not carry the “baggage” that schizophrenia has come to carry. Colleagues who agree with me have started a petition to the American Psychiatric Association, which readers may want to consider endorsing.