One Great Read: On making room for our true selves and others

Unmasking Autism: Discovering the New Faces of Neurodiversity by Devon Price

The estimated prevalence of autism in the United States has gone up again. A report released last week by the U.S Centers for Disease Control and Prevention, using 2020 data, put the rate among 8-year-olds at 1 in 36, up from 1 in 44 in 2018.

Lots already has been written arguing that this is further evidence of an “epidemic” and a government failure to investigate the cause. May I suggest you skip all of that, along with hot takes about overdiagnosis, and instead read this STAT perspective piece by John Elder Robison and Dena Gassner, who are both autistic themselves and parents to autistic adult children. “There is no ‘epidemic of autism,’” they wrote. “Instead, what we face is an epidemic of need.”:

This is critical, because unsupported autism contributes to homelessness, abuse, self-harm, and other preventable damage. The more autism we recognize, the more people we can help.

That help could include greater access to services, as needed, and a societal shift toward a deeper understanding of what autism actually is. Devon Price’s latest book, Unmasking Autism: Discovering the New Faces of Neurodiversity, starts with that question and an answer focused on what it isn’t:

Until fairly recently, most people believed Autism was rare, that only young boys had it, and that it was always easy to see. Think of Dustin Hoffman’s portrayal in the film Rain Man: he’s institutionalized as a child because he’s profoundly disabled and too ‘difficult’ to have at home, he never gives eye contact, wanders off dangerously when not closely watched, and has a preternatural talent for math that his nondisabled brother exploits for personal gain. This is how all of us were trained to view the disability: a horrible condition that renders you freakish and helpless, your life only as valuable as your savant-like skills are to other people.

Price is a social psychologist and assistant professor at Loyola University. He is autistic, and Unmasking Autism is a careful unfolding of what it is to live as an autistic person in a world that demands compliance, told through his own story, many others’ and lots of research.

Masking is the practice of hiding or denying one’s autistic traits in order to conform to societal expectations that privilege assimilation. Price explores what masking looks like and what it costs emotionally, psychologically and physiologically. And, he details what it can mean to unmask, including adapting one’s life—from the setup of a desk space to relationship dynamics—to actual needs rather than to external expectations, or recognizing what it feels like to stop struggling to meet neurotypical social norms.

Price focuses especially on autistic women and gender-nonconforming people, and on autistic people of color, and he illustrates how autism interacts with other aspects of a person’s identity in ways that can put them at higher social risk and increase the pressure to mask.

If this is a new idea to you, this LifeKit conversation between Price and Eric Garcia, about masking and “how to live more freely,” is a great place to start. Both are autistic themselves. (Garcia’s book, We’re Not Broken, is an accessible introduction to the neurodiversity movement, the political history of the diagnosis and the failures of current policies and societal standards in addressing the needs of autistic people.)

Price’s book is powerful and I think it will be increasingly relevant the deeper our cultural understanding of autism becomes. Here are three reasons to read it:

It is broadly inclusive and welcoming, for the reasons listed above, but also within the context of neurodiversity. A formal diagnosis is cost prohibitive for many people or inaccessible for other reasons, including problematic diagnostic criteria or misinformed health professionals.

As autism diagnoses among children increase, so too do the number of parents looking for help in understanding their child’s inner lives and how to best support them, which may also include reflections on their own neurotype. Price explicitly welcomes parents and others, with or without a diagnosis:

[M]any people with subclinical Autistic traits may share common struggles and goals with us, and deserve to be included in our ranks. This includes the parents or relatives of diagnosed Autistic children who come to realize they’re on the spectrum as well, and people with ‘sibling conditions’ like ADHD or PTSD.

I want Autistic people to experience less shame about who they are, and to learn to take off the restrictive masks that have trapped us for decades. The first step to unmasking is accepting who you are, and finding others with similar experiences. You don’t need a piece of paper from an assessor to begin to do that.

Price offers tools for neurodivergent people that could help anyone. He includes a series of writing prompts developed by autistic coach and disability advocate Heather R. Morgan, to help people identify what they value in life, how their lives are or aren’t guided by those values, and how those values relate to one another.

It’s something anyone can use. After all, Price told Garcia, “we all get out of touch with who we really are, just from the grind of everyday life.” For autistic people, that grind is especially intense. I’d like to think that if everyone acknowledged how the grind buries them, at least sometimes, the autistic experience might be better understood, too.

Price’s call to action: Create a neurodiverse world. Price is bold and specific about what needs to change to allow autistic people to unmask and live more fully as themselves. That includes stronger legal protections for people with disabilities, much improved training on neurodiversity for teachers and health professionals, access to universal health care, and abolition of systems that have unjustly institutionalized disabled people and especially the school-to-prison pipeline that labels some autistic children, and especially Black children, as “bad.”

Making those changes requires a shift in collective thinking, away from a medical approach to autism that sees this disability as an individual failing, in which the goal is “to identify what is wrong with people and prescribe some kind of intervention that will make the symptoms of that wrongness go away.” A social model of disability acknowledges that a person may, in fact, be disabled by the social and political constructs that surround them. When it comes to the struggles of autistic people, Price wrote, “each of us has been repeatedly overlooked and excluded because society views our differences as shameful defects rather than basic human realities to accept.”

Price goes on to talk about how, for those who feel safe and capable, unmasking is a bold, defiant act. There are a million small, meaningful ways that everyone else—parents and educators and neighbors and extended family members and managers and more—can act too, perhaps by asking themselves what they value in the people around them, over and above compliance, and how can they make more room for that?