Autism Masking A data physicalization highlighting the lack of data concerning autistic camouflaging behaviors

"Waits at the window, wearing the face that she keeps in a jar by the door."

- The Beatles, "Eleanor Rigby"

Autism Spectrum Disorder (“ASD” or “Autism”) is a neurological disorder involving, broadly speaking, persistent deficits in social communication and interaction, and restrictive, repetitive behaviors, identifiable to a degree requiring some level of support. These communication and interaction deficits include deficits in social-emotional reciprocity, as seen in things like back-and-forth conversation; deficits in nonverbal communication, including poor eye contact or flat affect; and deficits in maintaining and understanding interactions and relationships, such as difficulties adjusting behaviors to suit various social contexts. The restrictive and repetitive behaviors can include repetitive motor movements or speech, inflexible adherence to routine, highly restricted and fixated areas of interest, and hyper- or hyporeactivity to various sensory inputs. (APA, DSM-V, 2013). In the past, Autism was viewed as a developmental disorder, problematic only in children; it is only in more recent years that the challenges faced by Autistic adults have been recognized as significant. As such, the data on adults with the condition is still relatively sparse, and the study of the field itself fairly young. Indeed, one source suggests that proper research into the specific issue of camouflaging behavior only began as recently as 2017. (Hannon, B., et al., A Comparison of Methods, 2022.)

As mentioned, one of the challenges facing Autistic individuals is camouflaging behavior, also known as "masking." Masking is the set of behaviors undertaken by people on the Autism spectrum seeking to emulate or blend in with their neurotypical peers, or simply to not draw attention to themselves. This can include adopting social personae, suppressing various neurological tendencies (such as self-stimulating behaviors, or "stimming"), avoiding comforting routines and rituals, and otherwise presenting and maintaining a complete artifice of personality to those around them. This can be compared with other camouflaging behaviors in other communities, such as LGBTQ+ masking and code-switching.

In the LGBTQ+ community, people mask by making “subtle but profound changes to their everyday lives to minimize the risk of experiencing discrimination, often hiding their authentic selves.” Masking impacts everyday decisions and social interactions. (Singh, S., and Durso, L.E., Widespread discrimination, 2017). Similarly, code-switching, frequently used among communities of color and other marginalized communities, “involves adjusting one’s style of speech, appearance, behavior, and expression in ways that will optimize the comfort of others in exchange for fair treatment, quality service, and employment opportunities.” Code-switching is used by marginalized communities to elevate their social standing, to blend with others, and even to survive police interactions. (McCluney, C., et al., Code-Switching, 2019).

The key difference between Autistic masking and these other forms of camouflaging behavior stems from the very components of the ASD diagnosis listed above. Unlike a typical LGBTQ+ individual, person of color, or member of another marginalized community, all of whom typically possess a certain level of social awareness and mastery, individuals with Autism do not come by such talent intrinsically. The fine art of social interaction, of understanding the atmosphere in a room and adjusting one’s behavior accordingly, is not native to the Autistic community by default; for many, the treacherous battlefield of social interaction is more akin to an academic subject, to be studied and drilled rigorously. As a result, the already stressful act of trying to behave in a particular manner in order to blend in, to avoid drawing attention, or to advance one’s standing, is exacerbated by the challenge of even understanding what mistakes are to be avoided in a given scenario. Further complicating this challenge are the various restrictive and repetitive behaviors mentioned above, including stims, many of which are tools to cope with the anxiety such interactions can provoke, and all of which must be actively suppressed when one is attempting to mask.

In 2021, the Clinical Psychology Review contained an article exploring Autistic masking. The authors sought to establish, in examining the extant body of work, to create a comprehensive document studying Autistic masking behaviors. The article sought to be “the first review to systematically appraise and synthesize the current evidence base pertaining to autistic camouflaging in children and adults of all sexes and genders.” However, after extensive review, they concluded that there simply was not sufficient data to engage in the level of robust analysis and review they sought. The authors noted that “the evidence base was limited regarding participant characterisation and representativeness,” and that “[g]iven the nascent stage of camouflage research, future research is required.” Despite these disappointing results, however, the authors were able to identify three key points. First, the authors noted that, based on their preliminary data, adults with more self-reported Autistic traits reported greater engagement in masking behavior. Second, the authors noted that Autistic girls and women appear to demonstrate more masking behaviors than Autistic boys and men. And third, the authors noted that higher levels of self-reported masking are associated with increased mental health difficulties. (Cook, J., et al., Camouflaging in Autism, 2021).

On the first take-away from the article, that participants who self-reported more Autistic traits engaged in greater levels of masking would seem obvious. While ASD is itself an "invisible" disability, the manifestations of the disorder are frequently visible. Whether that refers to social awkwardness or socially inappropriate behaviors, or physical or verbal stimming behaviors not suited to context, or any number of other challenges, many of these traits have a tendency to make one stand out. A person engaged in masking would likely seek to suppress these behaviors, and the more of these tendencies they demonstrate, the more they would have to work to suppress them. This is especially true in Autistic individuals who self-report their Autistic traits, as these individuals have a greater level of self-awareness, and thus are likely to feel even more self-conscious about them. Unfortunately, much of the information on this point is anecdotal or qualitative; as Cook and company note, there isn't enough hard data to make specific determinations about this issue.

On the second point, the matter of the gender disparity is not new. It has long been hypothesized that the higher level of masking among autistic girls and women is part of what has contributed to the significant diagnosis gap between men and women – according to one study, “[t]here appears to be a diagnostic gender bias, meaning that girls who meet criteria for ASD are at disproportionate risk of not receiving a clinical diagnosis.” (Loomes, R., et al., Male-to-Female Ratio, 2017). However, although Cook and company noted that there have been numerous examinations of the gender disparity, the data was still limited.

On the third point, the matter of mental health difficulties, it is clear that people on the Autism spectrum face additional challenges. This is, if anything, an understatement - ASD overlaps with a number of other neurological and mental health challenges, including Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), and depression, among others. A key illustration of this is the rate of suicidal ideation. According to a 2022 study by the CDC, the rate of suicidal ideation among the adult population of the United States at large is approximately 4.3%, the rate of suicidal planning is 1.3%, and the rate of attempted suicide is 0.6%. (Ivey-Stephenson, A., et al., Suicidal Thoughts and Behavior, 2022). According to a separate study in 2023, those numbers among the Autistic population are 34.2%, 21.9%, and 24.3%, respectively. (Newell, V., et al., Suicidality in Autistic and Possible Autistic People, 2023). On the subject of mental health challenges, there can be little dispute that suicidal ideations are a significant concern, and the difference in those numbers is indeed concerning. Cook and company specifically noted that “any association between psychological distress and camouflaging is of significant concern, given the high rates of co-occurring mental health difficulties found amongst autistic adults[.]” (Cook, 2021). Unfortunately, once again, the dearth of data on the subject makes unclear how much masking behavior contributes to those figures, and the nature and extent of any such potential causal relationship.

The Cook article also entirely fails to address other impacts of masking. For example, numerous studies have examined the employment status of Autistic adults, and found that the rate of un- and under-employment among the Autistic community is significantly higher than that of the general population. It seems, from a common-sense perspective, that masking behavior - or a lack thereof - contributes to this disparity to some meaningful degree. However, this issue is not scrutinized in the Cook paper. This, among other impacts of masking, is an issue that likewise demands examination and further data.

With such concerning imagery, but such unclear figures, the question arises as to how to present that data – or lack thereof. Clearly, more research is necessary. Any attempt at data physicalization must therefore compel further inquiry, if only to provide the data that would have added clarity to this project.

My data physicalization, to reflect the subject matter, is a neutral mask. The mask was rendered in TinkerCAD, and produced via 3D printer. The design is deliberately minimalist, for multiple reasons. First, the neutral expression reflects the flat affect - an emotionally blank face, commonly associated with Autistic individuals. Second, it reflects the masking phenomenon - the challenge of artificially creating an expressive demeanor when your face defaults to a blank. And third, it reflects the lack of data - the void of expression reflects the void of available data.

Affixed to the mask are stickers, created with basic image software and a Cricut cutter, designed to draw attention to the lack of data with the question, "Where is the data?" Issues like the gender disparity in masking, and the emotional and psychological toll of the practice, have been considered, but not addressed in great detail. More data is necessary to fully understand, address, and possibly resolve this challenge. Notably, while one side of the mask is decorated with these questions, the other side is left deliberately blank, again to evoke the lack of data. The words focus the viewer's attention - we have the questions - and their absence on the other side emphasizes the point - what are the answers?

Having resolved the task of creating an object that reflects data which does not exist, the outstanding question was how to address each of the remaining questions posed in the assignment. First, an explanation of the process. This, I believe, I have already laid out above. Second, a description of the challenges facing a marginalized group, in this case individuals on the Autism spectrum, in the United States. Again, I believe I have addressed these issues, or at least a particular microcosm thereof, above.

The third matter to be addressed is the stakeholders in this issue. Not to oversimplify, but everyone is a stakeholder here. Literally everyone. Members of the Autistic community are stakeholders, as the issue of masking is a personal struggle for almost everyone on the spectrum. Members of the non-Autistic neurodiverse community are stakeholders, because a rising tide raises all ships - considerations given to members of one neurodiverse community tend to benefit people across multiple neurodiverse communities, and any resolution to the challenge of masking will likely benefit people with other neurological challenges. And neurotypical people are stakeholders, as they are frequently the source of masking stress and pressure. Were there no pressure to conform to a neurotypical standard, the need to mask would be substantially less.

As to what courses of action or possible courses of action exist, this is an unfortunate question. If there existed a solution - even a hypothetical one, even a path generally towards a solution - there would be no need for this field of research. Humans are tribal creatures by nature, and anyone or anything "other" immediately sets off alarms in the primal lizard-brain. People on the Autism spectrum will always be different, and will always trigger those alarms. We can either expect Autistic people to continue to mask, both for their own safety and for the comfort of their neurotypical peers, or we can train the entire neurotypical population to ignore those alarms and simply accept others as they come. The latter, while perhaps not easy or practical, is perhaps obviously my preference. The burden should not be on the Autistic community to unmask, but on the non-Autistic community to remove the pressure to mask. It does seem, then, that DEI training and education offers the only possible road to a world where Autistic people can feel more uncomfortable removing the mask. That, and more research, and the data that brings.

CITATIONS:

• Alaghband-rad, J., et al. (2023). Camouflage and masking behavior in adult autism. Front Psychiatry. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10060524/
• American Psychiatric Association [APA]. Diagnostic and statistical manual of mental disorders. 5th ed. [DSM-V] (2013). Autism Spectrum Disorder. Arlington, VA: American Psychiatric Association.
• Cook, J., et al. (2021). Camouflaging in autism: A systematic review. Vol. 89, Clinical Psychology Review. https://www.sciencedirect.com/science/article/abs/pii/S0272735821001239
• Hannon, B., et al. (2022). A comparison of methods for measuring camouflaging in autism. Vol. 16, Issue 1, Autism Research, International Society for Autism Research. https://onlinelibrary.wiley.com/doi/10.1002/aur.2850
• Hull, L., et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders. https://link.springer.com/article/10.1007/s10803-017-3166-5
• Ivey-Stephenson, A., et al. (2022). Suicidal Thoughts and Behavior Among Adults Aged ≥18 Years – United States, 2015-2019. Surveillance Summaries, Morbidity and Mortality Weekly Review, Centers for Disease Control and Prevention. https://www.cdc.gov/mmwr/volumes/71/ss/ss7101a1.htm
• Loomes, R., et al. (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child & Adolescent Psychiatry. https://www.jaacap.org/article/S0890-8567(17)30152-1/fulltext
• Miller, D., et al. (2021). “Masking is Life”: Experiences of Masking in Autistic and Nonautistic Adults. Autism Adulthood. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992921/
• McCluney, C. et al. (2019). The Costs of Code-Switching. The Big Idea Series, Harvard Business Review. https://hbr.org/2019/11/the-costs-of-codeswitching
• Newell, V., et al. (2023). A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability. Molecular Autism. https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00544-7
• Singh, S., & Durso, L. E. (2017). Widespread discrimination continues to shape LGBT people’s lives in both subtle and significant ways. Center for American Progress. https://www.americanprogress.org/article/widespread-discrimination-continues-shape-lgbt-peoples-lives-subtle-significant-ways/
• Stanborough, R. (2021). Autism Masking: To Blend or Not to Blend. Healthline. https://www.healthline.com/health/autism/autism-masking