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David Baxter

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Changing the 'S' Word: Is There a Better Name?
Story by Stacie Z. Berg

Reprinted with permission from Schizophrenia Digest, Fall 2006

Last spring, in a thought provoking article in Schizophrenia Digest, "What?s in a name? A case for changingthe 'S' word," writer PatriciaJane Teskey made a compelling case for changing the name for the disorder known as "schizophrenia."

By changing the name, consumers with the symptoms of what actually may be a spectrum of disorders would have a more accurate and descriptive name attached to their diagnosis. Ideally, they would also experience less stigma, as they left behind a name with Greek origins that roughly translates to ?shattered mind? and which is often used in popular culture to mean "multiple personality disorder" or "split personality."

The question remains, can it be done?

"There?s nothing built into the system that says we can?t change names," says Michael First, MD, professor of clinical psychiatry at Columbia University and editor of the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV. The DSM is the medical resource published by the American Psychiatric Association (APA) that is used by doctors to make psychiatric diagnoses.

While the opportunity for a name change is down the road a piece? DSM-V is slated for publication in 2011?working groups of psychiatric professionals will soon be formed to decide what changes will be incorporated into this new edition.

Where do names come from?
The origins of the names of the disorders included in the DSM are varied. Some names of disorders, including schizophrenia, are historical. Others are decided by DSM work groups, task forces, and, finally, the APA leadership, says William Narrow, MD, associate director of the APA?s Division of Research.

As for all the new disorders, most of them aren?t new but refinements of older disorders that have gone through this process, Narrow says.

It is interesting to note that some syndromes, such as "road rage," are not actually disorders in the DSM? nor are they considered disorders by the APA. The terms are coined by the media or by therapists and do not have a scientific basis, Narrow says. Only those with a scientific basis are included in the DSM. Even so, some of these non-APA "disorders" are upheld in court, as with "parental alienation syndrome" in some child custody cases, according to Narrow.

Name change challenges
Of course, getting a name changed is easier said than done, particularly in the case of schizophrenia, a name consumers have "long been upset with," says DSM-IV editor First. The challenge, he says, is coming up with a new name that doesn't leave out anyone falling under this umbrella term and one that the medical community will agree upon. Consensus is key, he says.

Despite the challenges it poses, changing the name of schizophrenia to something more descriptive will not be precedent setting. Other diagnostic names have changed?but there is no single beaten path; each case was different.

For example, "multiple personality disorder" was changed to "dissociative identity disorder" when the current version of the manual, DSM-IV, was in work groups. In this case, "[the APA] work group for dissociative disorders decided that 'multiple personality disorder' was a very misleading name," First explains. The illness is actually identity fragmentation?not more than one personality?so the new name made sense and was a better description, he says.

There was also a move to change "social phobia" to "social anxiety disorder" in DSM-IV, according to First. But there was a lot of concern among professionals that people would be unfamiliar with the new name, he says. The solution was to list the disorder under its old name, followed by the new term in parentheses.

Finding broad agreement
Changing a name means changing the meaning, so it?s important to be precise and inclusive. But how do you do that?

"A strategy for changing the name should be descriptive," as it was for "dissociative identity disorder" and "social anxiety disorder," says First. Both of these new terms are better descriptions, he says.

You don't want to choose a name that's based on theory, nor do you "want to pick a name that implies only a subgroup of people with schizophrenia," First says. You also don?t want to come up with a new name that does more harm than does the term "schizophrenia."

"[The] real challenge is getting enough 'buy-in,'" First says. The new term must gain consensus in the psychiatric community.

"It's not a scientific issue," says Narrow. It's just that everyone must agree the new name is better than the original name.

With schizophrenia, "[it's] not obvious what it should be," First says. He points out that there's no one biological source, and that makes it hard to come up with a name.

Passionate opinions
A call from Schizophrenia Digest (Spring 2006) for name change suggestions brought in an overwhelming response from readers?those with schizophrenia, caregivers, and clinicians. Many felt that the need for a name change was long overdue, while a few readers expressed the opposite opinion, saying it would do no good. One thing is for sure?the call for name change suggestions spurred passionate responses.

"Take a lesson from AIDS activists: Spend your time and energy on continuing the main focus of StigmaBusters: education?of the public, of political leaders, and of families and consumers. Discrimination is, largely, a function of ignorance and unfamiliarity, not of language," says Digest advisory board member Stephen M. Goldfinger, MD, professor and chair of the Department of Psychiatry and Behavioral Sciences at the State University of New York (SUNY) Downstate Medical School in Brooklyn.

But Stella March, national coordinator for StigmaBusters for the National Alliance on Mental Illness (NAMI), says, "I personally would like to see [a name change] happen because it's the only way to change culturally the abusive use." She says "a more accurate and descriptive name would help to reduce stigma and discrimination as well as offense and hurt to consumers and their families."

"The use of the term 'schizophrenic' brings complaints from many, many consumers and families struggling with schizophrenia," March says.

By changing the name, "consumers and their families living with schizophrenia would no longer be offended every time they hear or read about a 'schizophrenic' event referring to the economy, 'split' votes in Congress, etc. This misusage sends an inaccurate, trivializing message to the public that enhances the stigma," she says.

When First was told that there were more than 100 responses from consumers, their families, and clinicians to Schizophrenia Digest's call for name change submissions, his response was, "If one of those names was phenomenal, and everyone in the field got behind it, it would probably make it in."

Stacie Z. Berg is an award-winning science/medical journalist and author of a blog (www.psychobabble.biz) on novel brain disorder research.
 

David Baxter

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I've previously expressed my opinion on this: I don't think the problem is the name of any mental disorder - the problem is the stigma that having a mental disorder brings with it, whatever the name.

I also think that mental health professionals, sufferers, and family members already know pretty much what schizophrenia is and what it implies in terms of treatment and prognosis, even if Hollywood and journalists can't seem to get it straight. Surely, the answer is to try to educate those who keep getting it wrong, not to dream up new names that no one will understand.
 

^^Phoenix^^

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One of the problems is the way schizophrenics are portrayed on the tv and movies, right? Well, I think a name change would only able the producers/writers/directors of these to feel smart by using, and probably describing the new name of the disease. Then it would just start again.

I felt that the letter reffering to the work done for Aids awareness was a good comparrison (even though Aids was originally GRIDS (err... gay related immune etc somethingorother http://www.gmhc.org/about/timeline.html) it was changed because well - it turned out to be incorrect :p and added fuel to the gay debate back then) but the work that the Aids workers have done asides from that - the education, the free contraception, the adverts, etc etc, EVEN the movies ;) - the awareness that has come about , I'm sure would be rated as successful.
 

David Baxter

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it was changed because well - it turned out to be incorrect
Yes. Similar to the change from "multiple personality disorder" to "dissociative identity disorder" - they were changed from something incorrect to something more accurate and meaningful.

I don't see that as similar to the schizophrenia issue, though - it's not the term that's inaccurate - it's just the way uninformed people use the term. Seems to me the answer is better public education, not making up new words.
 

^^Phoenix^^

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err.. yeah, thats what i meant, I was just covering the Grids issue, incase it came up in argument. :p
 

HA

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Initially, when I thought that changing the word would make a difference, I saw it as similar to the terms "mental retardation" or retarded. Developmental disorders/delays or special needs do not have the same impact as mental retardation does, so I thought a similar change might work the same way for schizophrenia. The difficulty that I have found with the MR terms not being used is having to use them to fully describe what I am discussing with someone but having to add that my intention is not to offend but better describe what I am referring to. Many people are offended when the MR terms are used, especially in the context "she is retarded."

Now I feel that it really is about education versus a word and if anyword is to be worked on it should be psychotic because quite a few people assume that psychotic and psychopath are one and the same.

Did you know that many people find the term "schizophrenic" offensive? I never use the word personally and although in the beginning of dealing with this illness in my son I was extremely offended by it, I have become accustomed to seeing it in the professional literature and have become somewhat sensitized but wish that it was not used. The primary concern here is that a person is not their illness and for many illnesses we do not refer to the person as though they are the illness versus have an illness. We say someone has cancer not they are a canceric. The big "C" word no longer brings the fear and isolation that it once did. The big "S" word still has to be recognized as the big "S" word first though. :~}

Disability organizations in general want people to be refered to as a person first. For example, a person who lives with or has schizophrenia instead of schizophrenic. Although the term depressive has been around for a long time it is now rarely used. "he is a depressive", just does not sit well with me. I personally feel more comfortable talking about people who have diabetes rather then calling them a diabetic even though this may have less "offensive feelings" attached to it. The principle is the same....the person is not the disease.

Why were the words manic depression changed to bipolar and I think it was a recent change? I prefer to use bipolar.
 

David Baxter

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Why were the words manic depression changed to bipolar and I think it was a recent change? I prefer to use bipolar.
because there are different forms of bipolar disorder and not everyone experiences/exhibits mania.
 

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