In August, the National Autistic Society called on medical professionals to change the way they diagnose women and girls with autism spectrum disorder (ASD). Ever since the term autism was first coined by Hans Asperger in 1944, it has remained predominantly, if anecdotally, associated with men and boys. As a result, women with the condition may be being overlooked, even as the public becomes increasingly aware of its existence.
I know this from firsthand experience. As someone who was diagnosed with ASD as a child and has written about it extensively, the majority of other people I’ve met with official diagnoses were male like myself.
“I believe that my experiences as an autistic person has definitely been affected by my gender and race,” says Morenike Giwa Onaiwu of the Autism Women’s Network. “Many characteristics that I possess that are clearly autistic were instead attributed to my race or gender. As a result, not only was I deprived of supports that would have been helpful, I was misunderstood and also, at times, mistreated.”
It’s hard to say with certainty whether ASD has become more prevalent in recent years or if diagnoses are simply becoming more common, but either way the number of documented cases has gone way, way up. According to the US Centers for Disease Control, roughly 1 in 68 children in this country have been diagnosed with ASD; males are 4.5 more likely to be diagnosed than females. In total, approximately 3.5 million Americans are estimated to be living with some sort of ASD diagnosis.
Onaiwus’ experiences were echoed by those of several other women I spoke with as well. Whereas autistic men like myself are often identified early on, women report that their symptoms are dismissed, sometimes for many years, due to stereotypes about their gender and race.
“Social awkwardness? Of course not; apparently I’m just rude—like all the stereotypes of ‘sassy’ black women rolling their heads and necks in a circle while firing off some retort,” Onaiwu says. “Lack of eye contact? Apparently I’m a ‘shy girl’ or ‘playing hard to get’ or ‘shifty.’ Or maybe I’m just being respectful and docile because I’m African and direct eye contact might be a faux pas. Sensory overload, or maybe a meltdown? Nope, more like aggression or being a drama queen. Anything but what it really is—an Autistic person being Autistic who happens to be black and happens to be a woman.”
According to Sharon daVanport, who identifies as autistic and serves as president of Autism Women’s Network, these types of gendered expectations can be very difficult to navigate. For instance, “an eight-year old boy might have an intense interest in collecting maps,” leading his parents to worry that his desire to remain inside all the time is a signal that something might be wrong. “In contrast, a young girl who spends hours upon hours researching her intense interest will be considered quiet, polite, lady-like, and all the other gender-based labels which society assigns to girls before they’re even born,” she said.
It’s not just children who may suffer as a result of this type of ignorance. When I spoke to Kayla Schierbecker, a transgender autistic woman and college undergraduate, she explained that aspects of her personality made it more difficult for her to be accepted as a woman. This, she believes, was due in part to the way her autism presented itself. “Some of my hyper-masculine traits are going to be a barrier toward transitioning,” she says. “I have a fixation on things that are stereotypically thought of as men’s interests: technology, the military, sports.”
Carolyn Mallon is a nurse who was recently diagnosed with ASD with support from her therapist and neuropsychologis. “The symptoms, the diagnostic criteria are simply based on studies that were done on men only,” she explains, which in turn makes it more difficult for some doctors to understand the different ways ASD may present in female patients like herself.
The problem doesn’t begin and end with diagnosis. Indeed, a case could be made that autistic men benefit from gender privilege in the way that society responds to their condition.
“Some of the behaviors displayed by those on the autism spectrum scale seem to be the way many men in patriarchal societies (like ours) conduct themselves,” explains Esther Nelson, an adjunct professor at Virginia Commonwealth College. Nelson, who believes her husband’s symptoms are consistent with an ASD diagnosis, has written about the intersection between autism and feminism, especially in terms of relationships. For example, Nelson notes that men who seem “rigid,” aggressive or lacking in empathy may not stand out in the way that women exhibiting the same behavior might. Even people who are aware of autism and are educated to some degree are more inclined to give her spouse a pass for certain negative behaviors.
Clearly, advocates for the autistic community (including myself) need to be much more cognizant of the way gender informs the experiences of our community. This needs to happen for clinical reasons, definitely—women and girls are missing out potentially years of treatment and support. At the same time, scientists are also realizing that ASD affects girls differently than boys, revealing holes in our understanding of ASD generally.
And on a more personal level, my activism on behalf of and as a part of the autistic community will never be complete if it is not intersectional. Indeed, I would say that it’s impossible to be an effective advocate for autistic individuals without incorporating a feminist perspective. When you fail to account for how gender roles shape every aspect of our social life, how can you effectively capture the experiences of women whose neurological typology impairs their social functioning?
I am reminded of the words of a woman who wrote a web comic about her experiences living with ASD. When describing how other people write about autistic individuals online, she noted that “the stories I read often describe people who cannot speak for themselves. These voiceless humans are treated as objects of inspiration and burden—objects, not people.” The process of humanizing the autistic community is difficult and ongoing, but it must begin with a pivot away from the discussion’s male-centric focus.
Update (10/12/16): This piece has been updated to reflect changes in the diagnosis of some of the people mentioned or interviewed.