These days, Uma Oswald treats their schizophrenia and autism diagnoses in the same way they treat other physical ailments.
“I’ve been having a lot of digestive problems lately,” explained Oswald, 26, who uses they/them pronouns and lives in Minneapolis. “Sometimes my stomach problems flare up real bad for a period and then they alleviate. My mental illness is like that. I’ve learned to keep it manageable because I’ve learned my threshold for stress.”
Back when Oswald was earning an undergraduate degree at the Art Institute of Chicago, they started hallucinating that trees and cicadas were sending them secret messages. Around that time they were eventually given a diagnosis of schizoaffective disorder. This wasn’t Oswald’s first experience with psychosis: Back when they were in high school, Oswald began obsessively thinking about government conspiracies, hearing voices in their head, running away from school and struggling with suicidal thoughts.
Those teenage symptoms were reflected in Oswald’s art: They created a series of haunting, disturbing self-portraits that earned praise but also caused Oswald’s parents great concern. Oswald was evaluated by a series of doctors but was never given a firm diagnosis. Later, after getting a diagnosis receiving treatment for their mental illness, Oswald realized that the disturbing paintings were visual depictions of what had been going on in their mind during those dark days. In 2019, the portraits, with information about their inspiration, were exhibited at the University of Minnesota’s Institute for Translational Research in Children’s Mental Health.
With time and careful, focused attention, Oswald has been able to shift the way they think about their mental illness. Eventually, Oswald’s diagnosis was changed to schizophrenia, and just last year they added a diagnosis of autism, but they now see those descriptors as just part of the complex, original, remarkable person they are.
Oswald has moved away from art and now works as a research support and technology access specialist at the University of Minnesota’s Institute on Community Integration. They have found a trustworthy psychiatrist and have successfully reduced their antipsychotic medications. Oswald is considering pursuing a graduate degree and has just moved in with their life partner.
Some people might say that Oswald has achieved recovery from mental illness, but Oswald likes to make it clear that they are not completely comfortable with that description.
“I don’t like the way some organizations use the word ‘recovered’ when talking about mental illness,” they said. “If we are speaking about a mental health disorder, instead of situational mental illness, you may have periods of remission and periods of episodes. But to say you are recovered or can recover, is, to me, false hope.”
For Oswald, it feels important to acknowledge that, while symptoms of mental illness can be treated and put into remission, those symptoms also can reoccur. And that doesn’t have to be the end of the world.
“I think some mental illnesses can be situational,” Oswald said. “But some are disorders and they become chronic. I am stable now. I don’t see myself ever being in a psych ward again. But I do have flare ups. They happen.”
Oswald has decided that their mental health flare-ups, while sometimes disturbing, are just part of life. They have built a strong relationship with a psychiatrist — Dr. Sophia Vinogradov, department head of psychiatry and behavioral sciences at the University of Minnesota Medical School — who Oswald turns to for regular mental health “pep talks” to evaluate their approach to their mental illness or make medication adjustments. This medical partnership has made a world of difference.
Oswald said that Vinogradov, who they jokingly call “my fancy doctor,” takes a person-centered approach to her work: “She doesn’t really believe in diagnoses. She puts them in your chart, but she doesn’t really like to discuss it. She’s great. She calls me her ‘poster child.’”
Oswald likes to look to the addiction recovery community for inspiration in building a life with mental illness. “Addiction is a mental illness, too,” Oswald explained. “People with addiction like to say they are in recovery, not recovered. I like the concept of being in recovery from mental illness.”
Oswald said that this way of thinking about recovery, of acknowledging that it can be ongoing rather than finite, helps to give others a better understanding of how they manage their own mental health.
“I picture my recovery like a triangle,” Oswald said, drawing a picture of an inverted triangle with the point on the bottom. “You have a platform that teeters. It can go either way and you could fall off. Sometimes my life is very much a balancing act.” Oswald has noticed that their mental health suffers when they are under stress: “I’ve had to learn over the years that I cannot work 80 hours a week.” They have developed a plan about what to do if their mental health slips and the delusions come back. It’s not always easy, but, Oswald said, so far it is working out: “It’s a balance, and I’m still figuring it out every day.”
New diagnosis, new understanding
Over the last few years, Oswald has noted that a growing number of friends and colleagues have asked if they were autistic. A good example is when Oswald was chatting online with a friend about detailed project they were working on and the friend asked, “Are you autistic?” They were struck by Oswald’s intense focus and interest in the project’s intricate details.
Another time, one of Oswald’s colleagues who has autism said, “One of the reasons I really like you is that you’re autistic, too.” Oswald laughed and said that they were not autistic. “She said that she’s really comfortable talking to me and she’s normally not comfortable talking to people who aren’t autistic.” This made Oswald curious. “I asked my therapist and my psychiatrist what they thought and they said, ‘I don’t really think you are.’ I was still intrigued. So I got tested.”
The autism screening included a one-hour interview and four hours of testing. Less than halfway through, Oswald recalled that the examiner asked, “How would you feel if you had an autism diagnosis?’” Oswald’s response? “I said, ‘I guess it would be kind of validating because what I read about it makes a lot of sense in a creepy way.’” The examiner answered, “We’re halfway through and I’m already leaning toward saying you’re autistic.” For Oswald, the eventual autism diagnosis felt like they were handed a list of explanations for the quirky way they’ve always navigated the world.
One of Oswald’s recent interests is the link between premature birth, autism and schizophrenia. Born at just 25 weeks, Oswald spent the first part of their life in the NICU. Recently Oswald, who was selected for the University of Minnesota’s 2022-23 MN LEND Fellows program, has developed a mentorship with Michael Georgieff, co-director of the Masonic Institute for the Developing Brain. Georgieff has helped Oswald increase their understanding of these significant connections.
“He studies premature babies,” Oswald said of Georgieff. “He explained to me that autism and schizophrenia are genetic. It is common for them to occur together. It is also common for people who were born prematurely to have them because babies at my gestation need on average six blood transfusions. I had 11.” Iron deficiencies in premature babies alter gene expression of important proteins that can lead to the development of those disorders. This explains, Oswald said, excitedly, “so much about how I got to be who I am.”
Fully formed adulthood
This new and developing understanding has been an important part of Oswald’s independent adult life. Though Oswald remains closely connected to their parents and other relatives, they have built a life of their own, with a good job, an apartment and a loving partner.
Last summer, Oswald and their father were shopping for oysters at a local seafood store, when Oswald spotted a cute guy working behind the counter. “I was just staring at him,” they recalled. “I’m not very good at being subtle. Now that I know more about autism, that makes sense, but I’m sure it probably seemed weird.”
The cute guy in the seafood shop was Corey, Oswald’s now-partner.
“It was kind of love at first sight,” Oswald said. “We both kind of got the wind knocked out of us.” Oswald was dying to get Corey’s phone number, but their father unintentionally got in the way. “Corey tried to ask me, ‘What are you doing on the Fourth of July?’” Oswald recalled. “Before I can answer, my dad jumps in and says, ‘I’m not doing anything. I’m just going to stay in and watch a movie.’ I didn’t get a chance to get his number. I was so bummed.”
Later, Oswald tried calling the store, figuring, “if he thinks I’m a creep I could say, ‘Sorry. I’m autistic. I thought maybe you were flirting with me.’” But no one answered the phone.
Trying to take advantage of this newfound romantic momentum, Oswald created an online dating profile. It was fate: “Not even 24 hours later I matched with Corey,” they said, laughing.
From the beginning of their relationship, Oswald made a point of telling Corey about their experience with mental illness. That was a good thing, because it wasn’t long before they experienced a setback: “Corey and I got COVID on our second date. We both got sick. I also had a couple of other stressful things happen. The stress lingered for two weeks and it started to cause a bad flareup of my mental illness.”
To deal with the crisis, Oswald met with Vinogradov. “We talked about a plan. The plan was to talk to my colleagues at work so they knew what I was dealing with.” Oswald said they felt comfortable talking to their coworkers about their mental health and asking them to keep an eye out if they appear to be developing symptoms. They’d always been open about their diagnoses and were happy to enlist others in spotting signs of flareups.
With Vinogradov’s blessing, Oswald began the long process of weaning off antipsychotics, powerful drugs that can cause significant side effects. It wasn’t easy. “The first time it was horrible,” Oswald said. “Antipsychotics are sedatives and without them I didn’t sleep for almost two days.” Oswald had to leave work to take their medication so they could finally get some rest. “I slept for like 20 hours. We realized that we needed to taper very, very small amounts, like half and a quarter and an eighth.”
Vinogradov has also helped Oswald build confidence and further understanding of the varied symptoms of their mental illness. Oswald has even developed a way to describe how those symptoms manifest themselves in their daily life.
“I call my delusions ‘blips’ and ‘bleeps,’” Oswald said. “For me, a blip could be getting hallucinations between sleep and wakefulness.” This kind of hallucination usually lasts for a split second, Oswald said, and are, “more annoying than disturbing.” A bleep, on the other hand, is, “a middle ground where it gets more chronic. The delusions can be prolonged. When it’s full-blown, I need intervention or medication.”
When Oswald is experiencing a blip or bleep, they contact Vinogradov: “She’ll say, ‘You know what you need to do to handle these. I know you know what to do. I believe you can do it.’ Then we make a plan.” This advice and support is key, Oswald said, and needed to keep living an independent, healthy life with serious mental illness.
Oswald understands that their life will always be a balance, but that’s OK. “It’s who I am,” they said, “and now I understand what it takes to make it work.”
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