The Cost and Privilege of Autistic Authenticity

Jay Eveson-Egler, BA

About the Author

Jay Eveson-Egler, BA (they/them) is an Autistic self-advocate and parent. They’ve worked with neurodiversity-based organizations and individuals in a variety of age groups and stages of life. They have a depth of knowledge of LGBTQIA2S+ issues in the Autistic community. They have prior experience founding and facilitating neurodiverse peer support groups and remain active as an adviser with the Neurodiverse Students Association at Mount Holyoke.

In the spring of 2013, an ordinary morning turned into a disorienting series of setbacks as I hurried to my first math class of the semester, only to discover a baffling administrative error – I wasn’t officially enrolled. Despite presenting evidence, the professor redirected me to Advising, situated on the other end of the sprawling campus. At Advising, I was informed that I needed special permission due to the late registration. The office they referred me to required an appointment. Overwhelmed, I expressed my stress and the need for better communication, leading to a bewildering turn of events: the advisor called the campus police, citing my “threatening” body language. This harrowing encounter, one of my initial forays into college life, nearly led to my withdrawal and serves as a stark example of the dangers many Autistic people face when unable to mask. 

Autistic masking refers to the conscious or unconscious effort to conceal one’s Autistic traits in order to navigate social situations in a manner that is often more accommodating for neurotypical preference. It is a response to a world that often struggles to understand and accommodate neurodiversity. This skill, which can manifest in various forms such as mimicry, suppression of stimming behaviors, or adopting a socially acceptable persona, cannot be generalized, as an experience, to the entirety of the Autistic population. For many of us, masking is an essential survival skill necessary to avoid social ostracization, and in some extremes, violence. 

Survival, in the context of Autistic masking, can extend far beyond the social sphere. By masking, we may find ourselves able to navigate the systems within our society. Blending in can sometimes lead to more opportunities in education and employment, as well as social opportunities we might not have otherwise been able to access. Masking can make interactions with police and people in our community safer for us, and more comfortable for them, and can also help us navigate ins and outs of our daily lives, such as doctor’s appointments, shopping, and transportation. 

On the surface, the ability to mask is a skill highly sought after. This ability seemingly enables individuals to more fully participate in life, aligning with societal expectations of productivity and independence. However, the cost of this adaptation is substantial. Masking can hinder access to necessary services, as those who excel at it may be wrongly perceived as having lower support needs. Likewise, masking can take a fairly heavy toll on individuals’ mental health. One study done in 2019 found that Autistic people who engaged in masking were significantly more stressed out than Autistic people who engaged in masking less, or not at all. Another study in 2018 found that Autistic individuals who engaged in masking reported being more depressed than their non-masking peers. A more recent study conducted in 2020 found a higher risk of suicidality in Autistic people who more frequently engaged in masking. Masking as a societal adaptation comes at the steep price of increased vulnerability to Autistic burnout and mental health challenges.

However, it’s important to recognize that while the narrative surrounding masking heavily focuses on its negative impacts, the mere ability to engage in it can also be seen as a privilege. The ability to mask, while detrimental to the long term wellbeing of individuals who engage in it, unlocks doors to spaces and experiences that many Autistic people who cannot mask simply don’t have access to. Masking as a survival mechanism allows Autistic people to navigate spaces and interactions that would otherwise be unfriendly or even dangerous for them. Individuals with higher support needs or who have other disabilities may not be able to mask. This leaves them disadvantaged and at risk in a society that fails to accommodate the needs of a neurodiverse population.

One of the most visible examples of the dangers non-masking Autistic people face can be seen in their interactions with police. A 2017 incident in Worcester, MA saw police assault a 10-year-old Autistic boy who was having a meltdown after his mother called 911 seeking medical assistance. In 2015, the New York Police Department beat a Black Autistic teenager outside of his home. Indeed, the risk of police violence or arrest is much higher for Black disabled people in general, who are twice as likely to be arrested before age 28 than their white counterparts. Poor police interactions with Autistic people are so common that a market has sprung up online for items such as disclosure cards and seat belt covers that explain that the individual using them is Autistic and what that may look like. 

Within education, non-masking Autistic individuals frequently encounter barriers in accessing inclusive education. The rise in police presence within school environments, coupled with the enforcement of zero-tolerance policies universally and without due consideration for neurological differences or disability requirements, significantly and unfairly affects disabled students. This not only results in a lack of equal educational opportunities but also exacerbates existing disparities between neurodiverse individuals, particularly those who cannot mask, and their neurotypical peers. This issue is not just a matter of educational inequality; it touches on fundamental principles of fairness, inclusivity, and the right to a quality education.

Medical discrimination represents a pervasive issue affecting Autistic people, with potentially more severe consequences for those who lack the ability to mask their condition. This discrimination manifests in various forms, such as communication barriers between patients and healthcare providers, particularly for those relying on alternative communication devices or methods. Lack of professional understanding of Autistic people by medical professionals extends to the denial of access to necessary treatments or tests, with clinicians and medical professionals often displaying a disconcerting lack of familiarity with prevalent conditions within the Autistic population. This deficiency in preparedness among healthcare practitioners significantly hampers their ability to engage with Autistic individuals meaningfully and impactfully. 

The narrative of Autistic masking is a complex tapestry that intertwines with various facets of life, from education to healthcare and encounters with law enforcement. While masking may serve as a survival mechanism, its toll on mental health and the risk of leading to burnout highlights the urgency for a society that accommodates diverse needs, especially considering the dangers non-masking Autistic individuals face within our current society. Advocacy should focus on dismantling barriers and fostering a world where Autistic individuals, regardless of their ability to mask, can thrive, contribute, and access the opportunities they rightfully deserve. Embracing neurodiversity is a collective responsibility, one that enriches and benefits our society, and paves the way for a more equitable future for all. 

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