Re-evaluating 'masking' and gender in autism research
According to a 2014 study, boys are four times as likely as girls to be diagnosed with autism. Until recently, both medical professionals and the general public believed this was the result of genetic differences between men and women. This has been due, in part, to Simon Baron-Cohen’s The Essential Difference, which argues that autism should be considered a kind of “Extreme Male Brain” syndrome, thereby making it much rarer in women. However, scientists such as Francesca Happé have argued that the underrepresentation of women and girls in autism statistics isn’t a result of lower rates of the condition in natal females; rather, it’s a demonstration of clinical bias in the diagnostic process as well as the different social expectations of boys and girls. Some researchers have gone so far as to propose the existence of a “female autism phenotype” and to posit that the inherent bias towards males in the diagnostic criteria calls for the development of an entirely new framework for diagnosing autism in people assigned female at birth.
More attention is now being paid to the plight of autistic women and girls, but most research fails to take into account gender diversity, focusing exclusively on comparisons between “autistic girls” and “autistic boys.” Not only does this do a disservice to trans and gender-non-conforming autistic people, it also tends to elide the nuances at work; it is impossible to distinguish between innate biological differences and those which result from socialization. This imbalance in scientific research is not only impeding our ability to further our understanding of the relationship between gender and autism, but it compounds and is compounded by cultural myths of gender and femininity.
Happé found “girls are less likely than boys to meet diagnostic criteria for [Autism Spectrum Disorder] at equivalently high levels of autistic-like traits” (emphasis mine). It’s not simply the case that girls are less likely to be autistic; instead, they are potentially just as likely to have the condition but much less likely to present with traditional symptoms. For example, a core autistic trait is “special interests,” meaning intense, focused interest in a specific topic. Stereotypically, autistic boys express special interest in things like trains or science; autistic girls are more likely to be preoccupied by animals or celebrities, interests also common with their neurotypical peers. It’s not that autistic girls don’t display core behaviors such as stimming (self-stimulatory behavior), meltdowns, and restricted patterns of interest—they often exhibit these traits differently and fly under the radar. In fact, researchers such as Sylvia Kenyon, Chris Barker and Nancy Pistrang, and Sarah Bargiela have suggested that “camouflaging” social difficulties constitutes a key feature of the “female autism phenotype.”
Girls and people assigned female at birth are socialized to be “nice,” quiet, and self-effacing. They are taught from a young age that they have a duty to be “good girls:” responsible, but not bossy; attractive, but not desperate; hard-working, but not too clever. Treading this tightrope is hard enough for neurotypical children and adults, but for those who are neurodiverse, these gendered stereotypes create huge barriers to accessing support. Autistic (and ADHD) girls respond to social pressures by employing “camouflaging” or “masking” behaviors. In Bargiela’s study, for example, the participants reported memorizing information about popular conversational topics, consciously developing strategies to socialize successfully, and mimicking other people or fictional characters.
Meltdowns in particular are a well-known autistic behavior, and typical meltdowns are seen more commonly in boys than girls. In contrast to the implicit permission young boys are given to externalize their emotions, young girls are taught to internalize. Rather than having an obvious meltdown, girls are more likely to suppress their feelings of distress until they’re alone or in a situation where they feel safe. This, in turn, leads girls to exhibit behaviors like self-harm and disordered eating as methods of dealing with these repressed emotions.
Existing stereotypes about both autism and gender are a significant reason why girls and people assigned female at birth struggle to access an autism diagnosis. Researchers have consistently found that patients must present with more severe traits or comorbid disorders, such as learning difficulties or ADHD, in order to be considered as candidates for autism assessment. Even having been referred for a diagnostic assessment, they’re at a disadvantage: teachers, parents, and medical professionals all tend to under-report autistic traits in girls.
“Existing stereotypes about both autism and gender are a significant reason why girls and people assigned female at birth struggle to access an autism diagnosis.”
Across the board, women’s pain is ignored and dismissed; our instincts about our own health are mistrusted more often than not. It’s unsurprising, then, that so many autistic women are diagnosed later in life, if at all. If, as a child, your distress is ignored or, in many cases becomes the grounds for punishment, it’s only natural you learn to compensate for your difficulties by masking them. In spite of its prevalence, however, masking is still primarily treated as a choice, something autistic people do, particularly women and girls, because they want to fit in. The terms “masking” and “camouflaging” carry weight in their connotation of deception, of hiding “the truth.” Too often interviewers ask autistic people why they mask, acting on the assumption that this is a conscious process. Instead, they should be asking autistic people who mask what factors influence their behavior and what support they need to stop masking.
Race also plays a role in the way people employ masking behaviors. Autistic people of color of all genders are forced to follow stricter patterns of “acceptable” behavior than their white counterparts. Autistic people of color who occupy a more precarious social position face greater fear of exclusion and are at higher risk of harsher punishments from relatives, teachers, and even law enforcement. In drawing on existing research, I’ve looked primarily at cisgender white girls and women; it is, however, essential to recognize these other dynamics at work and to call for research that explicitly includes people of color and trans and gender non-conforming people.
We need to reframe the way we think about masking, considering it a diagnostic criterion in its own right. It’s not that socialized-as-female autistic people are hiding their traits; it’s that we don’t see those traits as traits because the diagnostic criteria are so skewed towards a gendered, classed, and raced presentation of autism. By buying into these stereotypes about what autism “is” and how it “looks,” we ignore the plight of those whose behaviors are less noticeable. These cultural misconceptions about both gender roles and autism do everyone a disservice and put the onus on the person in pain, rather than those around them, to accurately report the problem. Going forward, we must push for more gender and racial diversity in autism research while dismantling dangerous stereotypes about autistic people that negatively affect so many lives.
