by Eric Garcia
Like so many other problems affecting autistic people today, the roots of this disparity go back to early autism studies. Leo Kanner’s research featured just three girls out of eleven subjects, though back then, that gender imbalance in a scientific study wasn’t as unusual as it would be today. In 1944, Hans Asperger, whose work in Vienna would lay the groundwork for the modern understanding of autism on a spectrum, wrote that “the autistic personality is an extreme variant of male intelligence” and none of the children he reported on in his initial study were girls.
Extreme male brain theory, which takes Asperger’s ideas a step further, was proposed by British psychologist Simon Baron-Cohen in 2002. It postulates that male brains are better at “systemizing,” or spotting patterns, a trait associated with autism, while female brains are better at “empathizing,” which autistic people are incorrectly deemed incapable of.
“Using these definitions, autism can be considered as an extreme of the normal male profile,” Baron-Cohen wrote in 2002. Baron-Cohen also argued that exposure to testosterone in the womb might lead to autism.
Many autistic women say these tropes and theories cause harm because they imply that women can’t be autistic. “Lots of other women I know and myself are living proof that we’re definitely not extreme males,” one autistic woman said in a 2017 Autism study.
M. Remi Yergeau, an autistic professor at the University of Michigan, is critical of extreme male brain theory. They noted how much of the diagnostic criteria surrounding autism is gendered and how this plays a role in furthering the diagnosis gap. For instance, having “special interests” is a hallmark characteristic of autism, but the common examples given of these special interests are cars and trains—things typically associated with boys. They pointed out that you rarely see ponies used as an example of a special interest.
Some researchers have noted that this might be because girls’ special interests tend to be more age-appropriate and less eccentric (think boy bands). So, while an adolescent boy’s obsession with trains may signal to his parents that he is on the spectrum, a teenage girl’s love of One Direction likely won’t spark that same awareness. This disparity is illustrated perfectly in a scene from the graphic novel Camouflage in which an autistic girl notes how her special interests were overlooked: “I was told ‘all girls like ponies, that’s not a special interest’ which wasn’t true. I knew far more about ponies than anyone else in the riding school.”
And gender expectations and perceptions might play a role beyond just special interests. One 2018 study from the Journal of Clinical Child and Adolescent Psychology found that girls with ASD had greater social communication problems than boys with ASD. Another study in the Journal of the American Academy of Child and Adolescent Psychiatry from 2012 found that girls who met the diagnostic criteria for ASD had “low cognitive ability and/or additional behavior problems” compared to boys with ASD, which suggested that girls were more likely to get missed in the diagnostic process and “may require additional problems to push them over the diagnostic threshold.” In short, girls have a higher bar to clear to get an ASD diagnosis.
But autistic girls can face a double bind when it comes to diagnosis. Some autistic behaviors fall under what our society sees as “female behavior” and are thus overlooked as an indicator of being on the spectrum.
“There’s certain times when you’re quiet because you don’t know what to say, [but] then that’s okay because that’s ladylike,” said Morénike Giwa Onaiwu, who is an autistic woman. “If you’re super-talkative that’s okay too because you’re just the chatty girl.” One study in Molecular Autism concluded that “gender-based expectations” were one of two factors contributing to “the unequal gender ratio in ASD.”
There is no doubt I got diagnosed at a younger age than the autistic women and girls I know. The very fact that clinicians were the first to point out to my mom that I needed more examination shows that even though the paradigm shifts about autism were fairly recent when I was a toddler, they were sufficient for the doctors to detect me. Perhaps this was because of my gender.
There are many possible reasons why autism is overlooked in girls, but one of the simplest is that practitioners are looking for the wrong symptoms. If girls do not conduct the same types of repetitive behaviors as boys or engage in them as frequently or if they do not focus on their interests as intensely as their male counterparts, diagnosticians might not recognize their behaviors as autistic. One 2014 study from the Journal of the American Academy of Child and Adolescent Psychiatry bore this out, finding that autistic females presented differently.
Girls may face more skepticism too. “It is also possible that high functioning females with ASD are differentially under-identified,” the same study noted. Females in the survey were shown to have lower levels of “restricted interest,” greater levels of social impairment, and “lower cognitive ability,” along with greater social communication impairment.
To put it simply, the concept of being autistic is biased toward males. There is empirical evidence showing that autism is overlooked in girls, which leads to them getting diagnosed later in life. Women under eighteen in the Netherlands were diagnosed with Asperger’s later than men under eighteen, according to a 2012 study published in the Journal of Autism and Developmental Disorders that surveyed 2,275 autistic people. For people over eighteen, the same was true when it came to autism diagnoses: women were diagnosed later. And autistic girls often get misdiagnosed. One 2010 study published in Disability and Health Journal surveyed 2,568 children born in 1994 who met the criteria for ASD around thirteen sites funded by the CDC. The study found that when an autistic girl presents as having an intellectual disability, “an [autism spectrum disorder] diagnosis may not be considered the primary problem and [intellectual disability] may be diagnosed, instead” and that girls, “especially those without a cognitive impairment,” might be identified as having ASD later than boys. Put simply, if autistic girls with intellectual disabilities have the latter identified, their autism is more likely to be overlooked by clinicians. Either way, the diagnostic criteria is biased against them.
There is also evidence that many autistic women are better able to blend into their neurotypical surroundings, which allows them to go undetected. Men also “camouflage,” but according to a 2016 study in Autism, women had higher camouflaging scores than men.
“When you go to get diagnosed, there are few specialists who have worked with girls, women, and LGBT folks,” Yergeau said. “What clinicians see is the masking. They assume that you’re nonautistic by virtue of the fact that you’ve developed a compensating or a passing behavior.”
For many autistic women, “wearing a mask” is a coping mechanism, a way to hide their differences. However, it can ultimately have an adverse effect, as it prevents them from getting a diagnosis and proper accommodations along with it. Liane Holliday Willey encapsulated this phenomenon perfectly in the title of one of her books: Pretending to Be Normal. When I first spoke to her, in 2015, she talked about why it was easier for autistic women to mask compared to autistic men.
“We blend in easier because society makes excuses for our wanting to be alone or not wanting to go to a dance,” she said. Autistic women and girls are often written off as simply shy or awkward.
Holliday Willey said she didn’t exhibit any behavioral problems in school, and she was misdiagnosed with attention-deficit disorder and obsessive-compulsive disorder. “But behind the scenes, I was throwing rocks and breaking windows, and I was burning things, and I was cutting myself, and I was doing those hidden things that I think girls take out on themselves internally,” she said. She wasn’t diagnosed until many years later, after one of her daughters was.
This “taking things out internally” manifests in many ways. Ashia Ray, an autistic biracial mother who lives in Boston, went undiagnosed until she was thirty, when she was pregnant with her first son. She grew up in a predominantly white city, and behaviors that would typically b
e coded as autistic were dismissed as idiosyncrasies from her Chinese heritage or the product of being raised by a single mother.
Without a diagnosis, Ray said she was forced to say yes to everyone and act accommodating and compliant, much as neurotypical women are conditioned to do. Our society is fundamentally patriarchal and thus values women who are collegial and not too disruptive. Women who say no, who don’t cater to others, or who “get in the way” of men are often labeled as frosty, schoolmarmish, or killjoys.
“It’s interesting to see how, because I grew up undiagnosed, I was forced to kind of accommodate everyone else and change my personality to fit in,” Ray told me. “Whereas you see a lot of white men who are diagnosed very young, and then they’re given all sorts of excuses for bad behavior.”
Ray said she got used to being uncomfortable, and because she didn’t know she was autistic, she assumed everybody else was too. “When I realized I was autistic, I was like, ‘Oh, you guys are not in constant pain? You guys don’t say yes even though you want to say no?’” Ray said that her diagnosis enabled her to set boundaries, which autistic people are rarely taught about. “We are allowed to set boundaries and create some personal safety for ourselves,” she explained. So many times, autistic people, particularly autistic women and nonbinary people, are victims not only of the skewed expectations of who can be autistic but of the standards that culture sets for their assigned gender.
Eryn Star also attempted to mask their autism, mostly as a means of survival.
“My mom pretty much viewed me being autistic as her fault,” Star told me, explaining that their mother believed vaccines were the cause of their condition. As a result, Star became so adept at masking their autism that their mother believed Star had “recovered.”
But the weight of presenting as neurotypical was heavy. “I think my brain was to a point where it thought the passing version of me was my actual self and it really wasn’t,” they told me. “I didn’t really know what the autistic version of myself was.”
Their attempts at masking, combined with the abuse by their teacher, was the final straw for Star, who developed generalized anxiety disorder. Then they saw a therapist, which finally turned things around for them.
“The therapist was like, ‘You should embrace being autistic,’ and I had never heard those words in a sentence because I was taught to hate it by my family,” they said.
Autistic women whose neurotypes are ignored can face harsh consequences, just like other people who aren’t recognized for who they truly are. One 2016 study published in the Journal of Autism and Developmental Disorders surveyed fourteen women who were diagnosed with autism later in life and found that almost all “experienced one or more mental health difficulty, with anxiety, depression and eating disorder being the most commonly reported.” Many of the women were dismissed by professionals when they expressed that they thought they might be autistic.
And unfortunately, rates of sexual abuse are much higher among autistic women; the same 2016 study noted that more than half the autistic women surveyed experienced sexual abuse, most from within their own relationships. These women spoke about “feeling obliged” or “gradually being pestered” to have sex and thinking it was something required of them. Autistic women’s uncertainty about social rules, such as not knowing they could say no if they wanted to refuse sex, increased their risk. This is not meant to victim-blame autistic women but rather to point out the need for awareness surrounding issues of sex and consent in the autism community.
Holliday Willey understands this confusion firsthand, noting that she complied with what men wanted when she was in high school. “Whatever they told me, I did. It could be from sexual [acts] to ‘go write my paper for me.’ [I thought that] this is what you do when you’re dating,” she said.
During our interview, Holliday Willey told me about multiple instances of intimate-partner violence that she experienced throughout her life. She explained the whirlwind of emotions that accompanied each incident, from embarrassment to shame to anger. Holliday Willey told me that she is only willing to discuss being sexually assaulted now because she has three daughters.
“And by God, I don’t want it to happen to kids that come after me—any kind of kid, on the spectrum, not on the spectrum, trying to fit in, low self-esteem, whatever,” she told me. The high rate of sexual assault on autistic women is the direct consequence of many of the misperceptions about autism—that it exists only in men, for instance, or that autistic people are asexual, thus rendering sex education irrelevant. On top of that, across the broader population, there is a general disregard for how sexual-assault survivors are treated. To move forward requires our society to reevaluate who we think can be autistic while letting go of our fears about teaching consent to neurodivergent people. When we are afraid of autistic people having a sex life, we make it easier for predators or abusive partners to hurt them, and we prevent them from learning that they have autonomy and the right to personal space. As mentioned in chapter 6, teaching autistic people about consent is vital to ensuring their safety.
Gender Identity
Autistic women and nonbinary people have sometimes struggled with how society tells them they’re supposed to act. Some autistic women felt pressured to adopt traditional gender roles (and the burdens that come with them), such as wife, mother, and girlfriend, finding “this incompatible with how they wanted to live,” according to the 2016 Journal of Autism and Developmental Disorders survey of fourteen autistic women.
“The schema of the autistic male is sort of quirky and awkward,” said autistic woman Kris Harrison. But women aren’t given the same liberty to be gauche. “If I miss a social cue, it’s like I’m falling down on the job of being [an] emotional caregiver that [society] expects of most women.”
Harrison is a statuesque blonde who wears flowing dresses accented by ornate jewelry that is perfect for stimming. If she comes off as a mix of eccentric professor and quick-witted mother, that’s because she is. She’s a professor in the University of Michigan’s Department of Communication and Media, and two of her three children are also autistic.
Harrison said she has experienced confusion about her gender since she was a toddler. “A lot of the difficulty I had socially was over wanting to do and say things that I knew would be fine if a boy did and said them—because it was fine when my brothers did them—but if I did them it wasn’t,” she told me. For example, she recalled wanting to joke about a character in the Monty Python movie Life of Brian, “Biggus Dickus.” “That realm of humor was off-limits,” she said.
“I don’t have gender dysphoria to the extent that I feel like I’d be more myself in a man’s body,” she told me. “I want to be able to talk like myself in this body and not have people go, ‘How dare you!’”
Many autistic women have trouble bonding with female peer groups. In that same 2016 study, eight of the fourteen women surveyed discussed their difficulties trying to form friendships with neurotypical women. They said they “often found it hard to manage what they perceived were socially expected skills of a woman.” This tracks for Harrison, who said she can be blunter in the company of men.
“A lot of autistic women will say that they’re pretty comfortable around men,” she told me. “I really kind of walk on eggshells in female collectives because you want to make sure your presence doesn’t stress other people out.”
Despite all the stereotypes of autism being a boys’ club, I often say (only half jokingly) that I am usually in the minority, given how many women and LGBTQ people I encounter in the autism community. For instance, at Autspace, many attendees used “they/them” pronouns or were genderqueer, and two transgender young men gave an entire presentation dedicated to exploring how gender and autism intersect.
One of those presenters was Charlie Garcia-Spiegel, who spoke with me about the overlapping Venn diagram between the autistic and queer communities. According to Garcia-Spiegel, autistic people often don’t pay attention to the s
ame set of societal norms as everyone else, and with that freedom comes a vision. “We can see that a lot of the social rules around gender are”—he paused, trying to find a way to put his thoughts delicately—“bullshit, basically.”
And research supports the idea that a large swath of genderqueer people are also autistic. In 2014, a survey in the Archives of Sexual Behavior showed that “gender variance was 7.59 times more common in participants with ASD than in a large non-referred comparison group.” Gender variance is defined as “an umbrella term used to describe gender identity, expression, or behavior that falls outside of culturally defined norms associated with a specific gender,” according to Pediatric Annals. Another article published in LGBT Health in 2019 found that children who were diagnosed as autistic were four times more likely to experience gender dysphoria.
“When we’re forcibly distanced from social rules anyways, a lot of us kind of look at them and see, ‘Oh, these social rules shouldn’t really have an impact on how I carry myself through the world, and what my relationship to my body is,’” Garcia-Spiegel said. The large contingent of transgender autistic people is like the large amount of gay autistic people (to say nothing of autistic people who are queer and transgender): discovering one’s gender identity can offer a road map to understanding one’s autism. Learning that they are autistic can show people that they are not wrong for living outside prescribed social rules and norms, including ones for gender and sexuality. Once they accept that they are autistic, they realize that a lot of social norms are constrictive and should be questioned
And yet, being transgender or queer is not entirely liberating for autistic people who identify as such. Often, they encounter just as much ignorance as there is in the cisgender world.