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What mental health experts want you to know about schizoaffective disorder

It’s a complicated and controversial diagnosis.

5 days ago

Maybe you’ve never heard of schizoaffective disorder. Or perhaps it’s the opposite: You or someone you love has been diagnosed with schizoaffective disorder or you think you or a loved one might have it, and you have some questions about what it really is. No matter where you fit in here, this rare and complex mental health condition is an important one to understand.

Knowing the facts about a disorder that falls at the intersection of some other commonly stigmatized mental illnesses is undeniably a good thing, whether or not you have the condition. The more working knowledge we all have about how complicated mental health can be, the better off we all are—especially people with schizoaffective disorder because it can make their lives really hard. A little more understanding and compassion are definitely warranted. With that in mind, here is what everybody with even a basic interest in mental health should know about schizoaffective disorder, including its symptoms, potential causes, and best treatment options.

Understanding schizoaffective disorder

Envision a spectrum with schizophrenia on one end and either bipolar disorder or depression (both mood disorders) on the other.

“In the middle, there are people who have some aspects of each condition. Schizoaffective disorder is a hybrid term we use to describe [this],” Russell Louis Margolis, M.D., professor of psychiatry and behavioral sciences at the Johns Hopkins School of Medicine and clinical director of the Johns Hopkins Schizophrenia Center, tells SELF.

Once you know that, the name of the disorder makes more sense. “Schizo” refers to schizophrenia, while “affective” references how mood disorders can change someone’s affect, or emotions.

Someone with schizoaffective disorder can experience symptoms of schizophrenia and bipolar disorder or depression at the same time or separately, and one disorder may present more prominently than the other, Dr. Margolis says. To fully understand what all that might look like, let’s explore how the symptoms of schizophrenia and bipolar disorder or depression can mix to create schizoaffective disorder.

Diagnosing schizoaffective disorder

Diagnostic criteria for schizoaffective disorder are outlined in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5 for short).

Unsurprisingly, some of the symptoms of schizoaffective disorder must borrow from schizophrenia. This gets pretty complicated, but the gist is that for at least a month, you have to exhibit at least two hallmark schizophrenia symptoms like delusions (believing things that aren’t true), hallucinations (seeing, hearing, or otherwise sensing things that don’t exist), and incoherent speech. People with schizoaffective disorder may also display other symptoms of schizophrenia, including extremely disorganized behavior, but those other symptoms aren’t necessary for a diagnosis. In order to make a schizoaffective disorder diagnosis, none of these symptoms should be happening because of other influences, like a substance use disorder.

But in addition to those symptoms, someone with schizoaffective disorder would also display symptoms of mood episodes that mimic either bipolar disorder or depression. This distinction is so important that schizoaffective disorder is actually further broken down into depressive type and bipolar type, according to the Mayo Clinic.

People with depressive type schizoaffective disorder experience mood episodes resembling major depression, including feelings of hopelessness, decreased levels of activity and energy, and difficulty doing everyday tasks, according to the U.S. National Library of Medicine.

Those with bipolar type schizoaffective disorder deal with depressive episodes as well as manic episodes, or emotional and behavioral “highs” that involve symptoms such as increased levels of activity and energy, reckless behavior, and irritability, per the U.S. National Library of Medicine.

Whether someone has depressive or bipolar type schizoaffective disorder, these mood-based symptoms must be present for at least half of the duration of the illness, and they need to happen alongside signs of schizophrenia at least some of the time, according to the DSM-5. But a schizoaffective disorder diagnosis also calls for at least two weeks of having delusions and/or hallucinations in the absence of a mood episode. (And as with the schizophrenia-like signs, something like a substance use disorder can’t better explain these symptoms.)
As you’re probably gathering, schizoaffective disorder diagnosis is pretty complicated, which we’ll explore more in a bit.

Exploring the possible causes of schizoaffective disorder

Experts don’t know exactly what causes the condition. Like tons of other mental illnesses, it’s likely a combination of factors. These include brain structure and chemistry, the Mayo Clinic says. For example, as with schizophrenia, some research suggests that people with schizoaffective disorder have reduced levels of gray matter (brain tissue that makes it easier for you to process information).

Scientists are still studying a complex genetic component as well. The disorder tends to run in families, meaning that having a relative with the condition increases your odds of developing it (but by no means guarantees it), according to the National Alliance on Mental Illness (NAMI). If one identical twin has the condition, the other has around a 40 percent chance of developing it, according to the U.S. National Library of Medicine.

Researchers are looking into a number of small genetic variations that they believe collectively increase a person’s predisposition to developing schizoaffective disorder, according to the U.S. National Library of Medicine. Many of these genes seem to be the same ones involved in schizophrenia or bipolar disorder. They help regulate a number of different brain functions, like the sleep-wake cycle, brain development, and chemical signaling. So it seems that heritability plays an important role, but it doesn’t tell the whole story.

Researchers also think that stressful events like a death in the family, along with the use of psychoactive drugs like LSD, may trigger the development of the disorder in people who may already be genetically predisposed, per NAMI.

How schizoaffective disorder typically presents

Symptoms of schizoaffective disorder usually show up during adolescence or young adulthood, often between the ages of 16 and 30, the Cleveland Clinic says. With the onset of symptoms, people with the disorder begin to have trouble with normal functioning at school or at work as well as in social settings, according to the U.S. National Library of Medicine. And although it’s generally viewed as equally common among men and women (or perhaps slightly more common in the latter than the former), men often develop the condition at a younger age than women, according to NAMI.

Men and women can also experience the disorder a little differently. Women tend to show more of the mood disorder symptoms (like depression) than men, Dolores Malaspina, M.D., M.S.P.H., a professor and the director of the Psychosis Program in the department of psychiatry at the Icahn School of Medicine at Mount Sinai, tells SELF. (This isn’t a huge surprise since women tend to have more depressive symptoms with schizophrenia and are also diagnosed with depression more often than men.)

The disparity in age of onset and symptoms likely has to do with sex differences in brain structure, development, and chemistry, Dr. Malaspina says: “Men and women have distinct wiring in the brain… it is not a surprise that brain disorders affect them in a sex-specific manner.”

The confusion and controversy around schizoaffective disorder

The biggest challenge for clinicians is that, by definition, the symptoms of schizoaffective disorder overlap with those of schizophrenia and a mood disorder, Dr. Malaspina says. That can make determining what’s going on really confusing.

For instance, during mood episodes, people with bipolar disorder can experience psychosis, or periods of hallucinations and/or delusions. That can seem like schizophrenia. Indeed, people who may actually have schizoaffective disorder are often diagnosed with either bipolar disorder or schizophrenia first, according to NAMI.

So while the DSM-5 criteria represent the psychiatry field’s best efforts to standardize our conception of schizoaffective disorder, its real-life application isn’t perfect. Criteria for having schizoaffective disorder versus schizophrenia, bipolar disorder, or depression have shifted over time and can be judged differently by different doctors, Dr. Margolis says. If you asked 100 clinicians to evaluate the same patient, you’d probably get a scattering of opinions on which of these conditions the person had, he says.

Because schizoaffective disorder is often misdiagnosed, it’s difficult to pinpoint how prevalent it is, according to the U.S. National Library of Medicine. But commonly cited numbers suggest that around 0.3 to 0.5 percent of the population has schizoaffective disorder.

However, thanks to the pretty arbitrary nature and low reliability of diagnosis, not all mental health professionals agree that schizoaffective disorder should even be categorized as its own condition, according to the U.S. National Library of Medicine. There was even discussion of removing it altogether from the DSM-5.

Some people believe that the diagnosis is overused and not strongly evidence-based, and that what we call schizoaffective disorder should really be classified as a subtype or feature of schizophrenia or a mood disorder. Dr. Margolis, for instance, doubts it is a separate condition. “It's an attempt to cut nature at its joints…to classify what can otherwise be confusing entities,” he says.

While this diagnosis may continue to evolve, experts including Dr. Malaspina and Dr. Margolis point out that labeling a condition is less critical than getting people the help they need. “People get too fixated on the distinction,” Dr. Margolis says. “As clinicians, we know that ultimately what’s important is that this person does have a form of serious mental illness that requires treatment and support.”

Treating and supporting people with schizoaffective disorder

Treatment usually involves a combination of approaches, with the goal of tailoring treatment to the person and their particular symptoms, Dr. Malaspina says, since the disorder can manifest in such a wide variety of ways. That said, treatment usually includes medication (like antipsychotics, mood stabilizers, or antidepressants) and therapy (such as cognitive behavioral therapy), according to NAMI.

As Dr. Margolis explains, the medication addresses issues like brain chemistry while the therapy helps the person deal with how their illness impacts their life. A primary goal of therapy is learning how to manage the symptoms that medication doesn’t resolve, such as more easily challenging voices that don’t exist instead of responding to them, Dr. Margolis says.

Other important components of treatment involve practical assistance navigating things like the frustrating and often incomprehensible bureaucracy of health care, as well as enlisting the support of loved ones, Dr. Margolis says. “Families can be essential to helping a person succeed in becoming increasingly independent,” he adds.

People with schizoaffective disorder are more vulnerable to problems like poverty, social isolation, and suicide. These kinds of complications are a painful reality for so many people with schizoaffective disorder. This is due in part to the way that the condition impacts people’s behavior.
“It is a condition that really interferes with the machinery used for social connections,” Dr. Malaspina says. “It’s very isolating for people.”

That includes effective communication, adhering to social norms, and even agreeing on a shared reality. This can make it really challenging to keep a job or make friends. But because of the way the condition impacts people’s emotional processing, it’s also often difficult for those with schizoaffective disorder to identify and therefore address their emotional or social needs, Dr. Malaspina adds.

The other root issue is how society shuns people displaying these behaviors. Think of the way we often treat individuals experiencing hallucinations in a public setting, Dr. Margolis says. “To the person hearing the voices, it’s all very real, so they’re going to talk back,” he explains. “They don’t understand why other people wouldn’t understand [how they’re acting].”

But at best people usually avoid someone acting this way, and at worst people make fun of and bully them. This kind of stigmatization only further isolates someone for whom forging social connections and navigating everyday life is already challenging—and it makes it even harder to obtain the medical care and support they so need.

“With help and support, they can manage symptoms and establish and achieve their goals,” Dr. Margolis says, “so that the disease interferes less with their lives and they can navigate the world better on their own.”