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
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.
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
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
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 "associative identity disorder" when the current version of the manual, DSM-IV, was in work groups. In this case, "[the
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.
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 "associative 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.
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)
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.
Subscribe to Schizophrenia Digest on Amazon.com and NAMI will receive a percentage of the sale!
“My magazine article evolved out of five years of writing letters to editors, politicians, and others in high places who had publicly used ‘schizophrenia’ and ‘schizophrenic’ to describe anything characterized by two or more opposing elements—split-personality derivation—and ‘schizophrenic’ as a noun used to label a person,” she says. “Other advocates were also writing letters, but we were not formally organized.”
After a circular argument with high-profile people who insisted that the ‘split personality’ usage is valid because it is in the dictionary, and with dictionary editors who explained that if a specified number of people use a word in a certain way, this usage must go in the dictionary, Teskey decided to focus on changing the name of the illness.
“I don’t know exactly where this path goes,” she says, “but I’m pretty sure you have not heard the last of me.”
What our readers say Suggested alternatives for ‘Schizophrenia’
In response to our “Name the ‘S’ Word” contest, we heard from readers across the
Abnormal Brain Pattern (
Abundance of Energy Mutation (
Active Spellbound Disorder
Affective Behavioral Cognitive Dysphoria
(ABCD; or “the letter disorder”)
Altered Brain Chemistry (ABC)
Altered Reality Syndrome (ARS)
Altered States Disorder (
Alternate Reality Perception Disorder
Alternative Dementia (AD)
Alternative Mindsplit Perception (AMP)
Alternative Perception (AP)
Bad Behavior, Emotional Disturbances,
Irrational Thinking (B BEDIT)
Biological Brain Dysfunction (BBD)
Brain Anomaly Dysfunction
Brain Chemical Disorder (BCD)
Brain Circuit Dysfunction (BCD)
Brain Interpreting Reality Disease (BIRD)
Chemical Imbalance in Brain Syndrome
Cognitive Transmitting Impairment
Common Neurotic Syndrome
Deficit Spectrum Disorder
Delusional Brain Disorder (
Delusional-Hallucinatory or “-tery”
Dementia Praecox Syndrome (DPS)
Disorder of Emotions, Behavior, and
Irrational Thinking (DEBIT)
Disorganized Thinking Disorder
Dissociative Thought Disorder
Distorted Reality Disorder (
Disturbed Emotions, Bizarre Behavior,
Irrational Thinking (DEBBIT)
Encefalo-Neuro-Pathic Syndrome Disease
Excess Dopamine Syndrome (
Extra Grace Required Syndrome (EGRS)
False Belief Syndrome (FBS)
Frontal Cortex Disorder (FCD)
Genetic Brain Disorder (GBD)
Heightened Awareness Disorder (HAD)
Hyper-Responsive Dopamine Disorder
Illusionary Perception (IP)
Insidious Mood Disorder (IMD)
Intensive Hypo Cognitive Sensory
Disturbance Disorder (IHCSDD)
Irrational Thinking, Disturbed Emotions,
Bizarre Behavior (IT DEBB)
Mind Brain Disorders (MBD)
Mind Computer Complex Disorder
Mind Distorted Disorder (or Syndrome)
Misperception Disease (MD)
Multi-Cognitive Perceptual Disorder
(MCPD; “Mc Pea Dee”)
My-Mind-Lies-To-Me, or Mymindliestome
Neural Pathway Disorder (NPD)
Neuro Biochemical Disorder (
Neuro Biological Disorder–Vincent Van
Objective Experience Disorder
Paranoid/Irrational Thought Syndrome
Perception Deficit Disorder
Perception Distortion Syndrome (
Perception Dysfunction Disorder (PDD)
Persistent Early Dementia Syndrome (PEDS)
Persistent Early Onset Dementia Syndrome
Persistent Thought Disorder
Person with a Dangerous Gift (
Personal Reality Disorder
Pervasive Thought, Delusional Hallucination
Pseudo Perceptual Syndrome
Psychotic Spectrum Disorder (
Reality Impairment Syndrome with
Distortion of Perception, Thinking, and
Reality Perception Disorder (
Secondary Perception (SP)
Sensory Dysfunction (SD)
Sensory Overload Syndrome
Spiridis - Spirit Disorder
Thought Disorder Syndrome
And the winners are ...
Eight winners were chosen in a random drawing. Each received a $100 gift check.
$100 gift check
Support NAMI to help millions of Americans who face mental illness every day.Donate today
Inspire others with your message of hope. Show others they are not alone.Share your story
Become an advocate. Register on NAMI.org to keep up with NAMI news and events.Join NAMI Today