In Loyola professor Devon Price’s most recent book, “Unmasking Autism,” the social sciences expert “shifts the narrative” of what it means to have autism by blending his personal experiences as an autistic person with historical context and coping strategies.
“For decades, we’ve been defined by how neurotypical people see us — as a hassle, or an embarrassment or source of shame,” Price said. “We need to actually start listening to how autistic people describe what we feel and what we struggle with. When all you’re doing is looking in from the outside, you miss so much of what autism actually is.”
People with autism have a “different way of looking at the world,” not a disease, Price explained. It’s a developmental disability caused by differences in the brain that causes people to learn, communicate and behave differently, according to the Centers for Disease Control and Prevention (CDC).
People with autism tend to struggle with social interaction and communication and display restricted or repetitive behaviors and interests, the CDC said.
Symptoms of autism vary significantly, but Price explained autistic people “process the world in a bottom-up way” which means they take in details of a situation to come to a conclusion about what’s going on. Because of this, it can be difficult for people with autism to prioritize which information they take in, resulting in sensory issues — when someone feels overwhelmed by intense lighting or sounds.
For Price, bottom-up thinking results in difficulties understanding how people are feeling. He said he notices changes in someone’s facial expressions, tone of voice and position but has to combine these “clues” to figure out the person’s emotions.
“It’s like I’m a detective every time I interact with people,” Price said. “Because we’re taking in this barrage of sounds and noises and we don’t know what’s important, we get overwhelmed by the sensory information. It’s why we get so exhausted being around people, even if we like them. It’s why we need more downtime to recharge after consuming information.”
Generally, allistics — people who don’t have autism — experience the world in a “top-down way” where they innately understand situations from prior knowledge and experience, Price said. This makes it easier for them to filter out information that isn’t important in a situation, for example, tuning out a conversation happening across the room.
Price’s book argues clinicians’ and the media’s standard definition of autism tends to represent how white, middle to upper class male children experience it instead of acknowledging the extremely varied ways austistic people present. This means the disability frequently goes undiagnosed in people of color, LGBTQ+ people and women.
“When an autistic person is not given resources or access to self-knowledge, and when they’re told their stigmatized traits are just signs that they’re a disruptive, overly sensitive or annoying kid, they have no choice but to develop a neurotypical façade,” Price wrote in his book.
Developing this facade, or “masking,” basically means “suppressing the autistic behaviors that feel natural” — for example, faking eye contact or scripting conversations before they occur.
“If you’ve been hiding a disability that makes you ‘socially awkward’ all your life, that makes you really socially vigilant,” Price said. “You’re constantly watching the reactions of other people, wondering ‘Am I being weird? Are they looking at me like that because I’m weird? Did I forget to say something?’ We try to game out what other people are thinking.”
Having all of these thoughts while also trying to process the world is “incredibly exhausting” and can cause depression, anxiety, alcoholism and eating disorders, among other things, Price said.
“It’s really, really unhealthy to spend your whole life pretending to be something that you’re not, ask any closeted gay person,” Price said. “If you’ve been masking all your life, you don’t even really know who you are or what you need. It’s a really distressing kind of existential dread.”
One of the most common ways of treating autism is Applied Behavioral Therapy (ABA) which aims to reduce autistic symptoms that impede daily functioning, the CDC said. Price said this therapy — which for years was the only insurance-approved treatment for autism — was designed to train austistic children to mask.
“If you talked too much about trains or your favorite Pokemon cards, you could get punished for it,” Price said. “You could get sprayed in the face with water or on the tongue with hot sauce for being too nerdy and autistic. They would force kids to make eye contact, even if it was painful for them, and to sit still.”
As an alternative, Price’s book offers ways of coping with autism that are more affirming. It includes strategies for getting in touch with one’s self, ways to unlearn shame surrounding their special interests and self-stimulating behaviors that help with sensory issues.
This can start small, for example, by trying not to apologize or predict how people are thinking for a day, Price said.
“It’s all about learning to drop that mask and accept all of the things that make us look a little different but are so good for us and make up who we are,” Price said. “It can start with challenging yourself to not hold yourself to this impossible standard of trying to be ‘normal’ all the time.”
Though unmasking is beneficial, Price acknowledges it’s not always safe for autistic people to be themselves, especially those in marginalized groups.
“I just know for a fact that, for Black autistic people, the stakes of being seen as weird or angry in public are way higher than for me as a white person,” Price said. “If I’m walking down the street singing along to my music, waving my hands, I might get some weird looks, but that’s the worst that could happen to me. I’m not going to get the cops called on me, or arrested or shot, or fired from my job.”
This means people need to trust their own instincts concerning where they’re safe to unmask and “cultivate those relationships and spaces where people accept” their authentic selves, Price said.
But, it’s not just on austistic people to accommodate themselves — everyone has to make an effort to make the world more accessible and forgiving for people with disabilities, Price said.
“The more restrictive our society is, the more disabled everyone is,” Price said. “Building a world that’s more accessible for autistic people, where we can be more openly ourselves is going to free everyone and make it easier for everybody to just breathe and be their own weird self and articulate what they need.”