Some mental health advocates in Massachusetts want a new name for schizophrenia
BY KAREN BROWN
NEW ENGLAND PUBLIC MEDIA
JANUARY 3RD, 2022
When someone is diagnosed with schizophrenia — a psychotic disorder marked by delusional thinking — they often experience fear and anxiety.
A group of Massachusetts-based researchers and advocates say changing the name of the mental illness could go a long way to reducing its stigma.
But others say the term itself is not the problem.
On a recent afternoon, Linda Larson hurried through her apartment building in Cambridge, Massachusetts, and didn’t answer interview questions until she got through the lobby to the parking lot.
“People probably think of me as eccentric, which is fine,” she said. “But I don’t want to go over the details of what it meant to be diagnosed with schizophrenia in front of —” Larson nodded toward a building manager and a few other residents milling about at the mailboxes.
As it happens, this interview was about the stigma of schizophrenia and what people think when they hear the term.
“It’s kind of like ‘sociopath,’ but worse,” Larson said. “There’s no expectation except violence and disengagement.”
That’s why Larson, 74, is among those advocating for a new name for schizophrenia. In fact, she came up with one while sitting with friends at a café. She was trying to explain what it was like to live with the psychotic illness for decades.
“And I said it’s like altered perception. Your perception doesn’t read the way other people do. It’s altered by the illness,” she said.
So, “altered perception syndrome” became one of nine alternative names suggested by a group Larson is involved with, called the Consumer Advisory Board. It’s part of the Massachusetts Mental Health Center, based at Beth Israel Deaconess Medical Center in Boston.
Together with researchers, the Consumer Advisory Board recently put out a survey to about 1,200 people diagnosed with schizophrenia, their family members, mental health professionals, government officials and others. They wanted to get a sense of how many stakeholders would like to change the name “schizophrenia.”
“That term over time has become so associated with hopelessness, with dangerousness, with volatile and erratic behavior that doctors are afraid to use that term,” said Raquelle Mesholam-Gately, a Harvard psychologist who helped lead the survey, which was published in the journal Schizophrenia Research.
Mesholam-Gately said people often confuse schizophrenia with dissociative identity disorder, which used to be called multiple personalities.
And she said it’s not just a semantic problem.
“I really think it interferes with people even wanting to get care to begin with because there’s so much stigma surrounding the term,” she said.
Schizophrenia was given its name more than 100 years ago when doctor Eugene Bleuler described the disorder as a splitting of psychological functions. So he used the Greek words for split mind, or schizophrenia.
“I think that schizophrenia in particular, is so misused in terms of our language and how it’s portrayed in the media,” said Mesholam-Gately. “People just randomly and casually throwing out the term, ‘Oh, he’s so schizophrenic, that’s so schizophrenic,’ that you don’t hear that as much with other kinds of conditions.”
Three-quarters of the survey respondents said they want a new name for schizophrenia. In addition to altered perception syndrome, other suggestions included: attunement disorder, integration disorder, and disconnectivity syndrome.
To Linda Larson, any of those would be better than schizophrenia.
She first started having delusions in the 1960s, when she was a teenager.
“For a while, I thought silver cars were CIA, green cars were Army, blue cars were Air Force, black cars were Secret Service,” Larson said, “just to give you a notion how misguided and out of touch with reality one can get.”
She managed to start a PhD program in literature at the University of Mississippi, when she had a major psychotic break.
“I stood outside a gas station and decided that I should blow it up,” she recalled. “And I had a Bic lighter in my hand and I stood there. And for some reason I didn’t.”
At that point, a doctor diagnosed her with schizophrenia and suggested she abandon her education.
“[He] told me and my parents that I would never be able to work as anything but a waitress,” she said. “And that was a joke, because if there’s one thing you can’t do when you tend to psychosis is be a waitress.”
Larson spent the next 20 years in and out of psychiatric hospitals, but in the early 1990s, she started taking a drug called clozapine. That drug can have serious side effects and doesn’t work for everyone, but she said she hasn’t had a psychotic episode since.
She has published four books of poetry, and had a long marriage until her husband died in 2020. She said it’s time to call the illness something less hopeless.
“The term schizophrenia hasn’t evolved with the treatment,” Larson said.
But many people who work in the field of schizophrenia don’t think the term itself is the problem.
Jo Ann Onduso runs a mental health program in Holyoke, Massachusetts, which is headquartered in a cozy old building, with couches and tables set up in a circle.
The program, called Prevention and Recovery in Early Psychosis (PREP), sees people ages 16 to 30 who have started to show early signs of psychosis or delusional thinking. The hope is that they can get treatment early and stop it from progressing.
Ondusa said the staff tries to avoid using the term schizophrenia when symptoms first appear, and then only when they are sure about the diagnosis.
“When we think culturally about schizophrenia, that’s a heavy-hitting word that comes with a lot of stigma, based on our sort of collective understanding that someone with schizophrenia is someone mumbling in the street who is homeless and that kind of thing or someone who’s ‘crazy,’” she said.
But Ondusa pointed out that many other aspects of mental illness also carry negative connotations, such as bipolar disorder, or even just the word “psychotic.”
“I think what needs to change is the stigma itself and not necessarily the name,” she said.
Ondusa said she had an uncle with schizophrenia, and she remembers her family rarely discussed his illness at all. That, to her, is the main problem.
“I don’t want to deny that language is very powerful and it can really impact us,” she said. “But there are other diagnoses, too, that you wouldn’t want to get. But let’s talk, let’s make it OK to have that disorder, rather than be afraid of that word.”
As a medical term, schizophrenia is unlikely to officially change anytime soon. That’s up to the American Psychiatric Association and its scientific advisors, who are in charge of updating the diagnostic manual of psychiatric terms, called the DSM.
Even those who ran the recent survey acknowledge logistical challenges of renaming a long-used diagnosis, especially around insurance and billing.
Nevertheless, there are several renaming precedents in the last decade, including the change from mental retardation to intellectual disability, and new categories for autism.
Ari Ne’eman is former director of the Autistic Self-Advocacy Network, which successfully worked to remove the term Asperger’s Syndrome from the most recent diagnostic manual (DSM5), so that all people with autism are now considered on the autism spectrum.
But Ne’eman, who said he is autistic, does think there’s a difference between the autism renaming campaign and the one for schizophrenia. His group’s effort, he said, “was largely focused on what the criteria were and only secondarily, what they were called.”
However, Ne’eman does see a key similarity between the two efforts — namely, that they were sparked by people who have the diagnosis themselves and want a greater say in how they’re labelled.
“I think terminological shifts, in a lot of ways, are more about the balance of power within the disability community,” he said.
He also acknowledges, however, that people with mental illness may want to be called something that the scientific community doesn’t consider medically accurate, and that poses a challenge.
For instance, while “altered perception disorder” was the most popular option in the recent survey, some scientists have said it may be too narrow to reflect what’s actually happening in the brains of people with schizophrenia.
“You optimally want to see something that accurately reflects the science, but also comes from community and refers and captures their own sensibilities about themselves,” Ne’eman said.
Although the field’s top scientists will get final say on whether schizophrenia gets a new name, Raquelle Mesholam-Gately, who led the recent survey, said it will be critical to include voices of those who live with the disorder.
“Because what’s the point of making a name change that people who have the condition are not comfortable with, and that they still feel is stigmatizing and discriminates against them, and that they will not feel comfortable seeking out care for?” she said.
Even then, Mesholam-Gately added, “It’s not going to be enough to reduce stigma and discrimination. There also needs to be public education campaigns that go along with that to really explain what the condition is and the treatments that are available for it.”
A version of this story appeared in The New York Times on December 21, 2021.