by Nara Schoenberg, Chicago Tribune/TNS | April 26, 2022
CHICAGO — Devon Price had a long list of rules for getting through the most ordinary day:
Don’t talk too much about the things that interest you, he would tell himself.
Don’t flap your hands or fidget, no matter how much better that would make you feel.
Don’t answer honestly when someone asks how you’re doing.
Don’t show how uncomfortable loud noises make you feel.
In his new book, “Unmasking Autism: Discovering the New Faces of Neurodiversity,” Price writes about how that strategy eventually backed him into a corner. Professionally, he was a dynamo, earning his Ph.D. in social psychology at age 25, but on a personal level, he was socially isolated, painfully lonely, deeply ashamed of who he really was and at a loss as to how to make things better.
It was only when he discovered he had autism — and slowly began to embrace his differences and quirks — that his life opened up.
“I realized ‘Oh, I’m not a misanthrope, I just hate being in public because it’s so loud and overstimulating. Oh, I’m not rude because I’m a mean-spirited person, it’s just that I give people an honest answer to a question when they ask me and that’s not what they expected or wanted to hear,” said Price, 33, an assistant professor at Loyola University Chicago’s School of Continuing and Professional Studies.
“All these things just started falling into place.”
Price estimates that 2% of U.S. adults are “masking” their autism, either because they don’t know they have autism or don’t want others to know. He said masking is exhausting, it reinforces shame, and it prevents people from living authentically and connecting deeply with others.
There’s also a political component, he argues: When society doesn’t see or hear people with autism, it has little reason to make changes aimed at accommodating and including them.
Still, Price is realistic about the potential risks of unmasking.
The world is still a very difficult place for people who have a recognizable disability, he said. He cited the example of a friend with autism who was recently fired after being very direct and serious about problems with a workplace diversity program, rather than expressing objections with cheerful diplomacy.
Unmasking can also cause problems in school, or put you at added risk for arrest, Price said.
He recommends first becoming comfortable with the true self behind the mask — learning to trust and value your unique gifts, and appreciate your needs.
His book includes exercises and suggestions for those interested in unmasking, as well as advice gleaned from therapists and coaches, a history of how autism has been defined, Price’s own story of unmasking, and the stories of people with autism he interviewed.
“If you’ve been made to feel broken, the biggest way to heal that is to find community with other autistic people,” Price said.
“When you find a way to forge trusting bonds with people who understand where you’re coming from and have some of the same totally benign quirks you have, you start to believe those traits are actually lovable in yourself.”
Price recommends groups such as Autistics Against Curing Autism in Chicago and the national Autistic Self Advocacy Network.
Price, a transgender man, said masking is particularly common among LGBTQ people, people of color and women, who may not neatly fit a definition of autism that largely reflects the careful study of middle-class white boys.
Despite his Ph.D. in psychology, Price had little knowledge of autism when a college-aged cousin approached him in 2014. The cousin had learned that he might have autism and wanted advice, but at that point, Price didn’t know much about autism beyond the stereotypes.
The cousin talked to Price about his own struggles, as well as the autism traits that seemed common in their extended family. For instance, there was the relative who would go on and on about a favorite subject until his audience was bored to tears, a practice some people with autism call “infodumping.”
There were relatives who weren’t good at understanding or communicating emotions.
And, perhaps most strikingly, there were family members who were unusually rigid in their schedules and routines, a behavior that helps people with autism manage a world that can feel unpredictable and overwhelming.
At the time, Price recalled, laughing, he and his cousin were on a family vacation — the same vacation their extended family had taken for about three decades. Every year, they went to the same amusement park and did the same things on the same dates.
Price started researching autism and discovered the autism self-advocacy community, which argues that autism should be valued as a perfectly normal human difference. The problem, advocates say, is a society that forces people with autism to adapt to its needs, rather than offering the support and understanding that would allow them to live more comfortably and authentically.
Price writes that it’s common for people with autism to discover their disability in adulthood, after suffering for years. His journey toward unmasking hasn’t always been easy, and he suspects he has taken on a lifelong project.
Still, he said, he’s making good progress: prioritizing the relationships in which he feels truly accepted and advocating for himself more at work, where he feels comfortable expressing himself with his characteristic candor.
“Before I started unmasking, I felt cursed, and almost dead inside. Existence seemed like one long slog of faked enthusiasm” Price writes in his book.
“Now, though life can still be difficult, I feel incredibly alive.”
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