Autism in Women: A Silent Trauma
As our understanding expands of autism spectrum disorders, more and more women are realizing in their adulthood that they are autistic. The National Autistic Society defines autism as a developmental disability that affects how people communicate and interact with the world. Up until recently, autism spectrum disorders were thought to affect men four times more than women. However, many experts suspect that experts have missed common traits of autism expressed by women.
There’s a saying that if you meet one person with autism, you’ve met one person with autism. While that might seem redundant, it serves to remind people that autism is a collection of traits that show up in various situations. People often use vague terms like “high functioning” and “low functioning” to describe and grade autism, which illustrates a fundamental misconception about autism.
People tend to conceptualize autism as a linear function, with people who can’t speak or execute tasks on one end and verbal autistics on the other. Autism is a combination of traits that show up at different levels in different autistic individuals. Most autistic individuals express different levels of the following traits:
One person we interviewed, “Kate,” describes her autism. “I think very rigidly at times. When things don’t go my way I get very upset.” Because their thinking can be rigid, they tend to thrive on routine and can get very upset when the routine gets disrupted. Autistic people can often get confused by idioms like “he wears his heart on his sleeve.” They often only tell the truth and have trouble understanding the concept of “white lies.” Autistic individuals can often have trouble understanding why someone would lie to them.
Autistic people can be sensitive to light, sound, taste, and texture. It is not uncommon for autistic people to have rigid food preferences and detest any food with a slimy texture. Women with autism often find women’s clothes distractingly uncomfortable. Many autistic people say they have a hard time listening to people in rooms where there are a lot of other sounds.
On the flip side, some autistic people have very little sensory sensitivity. One diagnosed individual reported breaking an arm and not realizing it until somebody pointed it out.
Stimming is repetitive behavior neurodivergent people use to self-soothe. Common stims are hand flapping, rocking back and forth, or making vocal sounds. Stims are a means of regulating emotions and sensory input. Being taught not to stim can be damaging to people in the spectrum.
Autistic people often develop intense and sometimes unusual interests. The classic stereotype is the autistic man who’s really into trains. Autistic women’s interests can often be overlooked if they’re seen as appropriately feminine such as makeup, horses, or TV shows geared towards female viewers.
Many people say that autistic people struggle with social skills, but studies show that autistic people can often communicate with each other with few difficulties. Subtle social cues can easily be missed by individuals on the spectrum since they often speak very directly with little intonation or body language. It is not uncommon for autistic girls to only have boys as friends.
So why are so many women going their lives undiagnosed? Carrie Beckwith-Fellows explains in her TED talk, “We are taught from a young age how to interact with people: we’re taught to chat, to be polite, to play together, to share, and to take it in turns.” It is speculated by many feminist thinkers that because little girls are held to higher social expectations, autistic girls tend to learn masking behaviors.
Masking is adopting or suppressing behaviors to appear “normal.” Many autistic people learn how to fake eye contact by looking at the spot between people’s brows and wait until they are alone to stim. Masking can be damaging because for many autistic people, stimming is a way to regulate emotions and self-soothe.
One of the biggest struggles women with autism face is a deep sense of alienation, inauthenticity, and burnout from years of masking. As one anonymous interviewer, “Claire” put it: “I spent so long thinking I needed to hide who I was so that people would like me. But… when you do this, you’re cheating yourself out of genuine connections you might make… How am I supposed to fall in love if I am hiding who I am?”
Another huge area of struggle for women on the spectrum is employment. When you scroll through forums for neurodivergent women, there are always a few posts every week asking how to deal with sensory overload in the work environment and navigate office politics. Fortunately, the 2020 lockdown has opened a lot more work-from-home positions, which tend to be better for autistic individuals.
While autism often presents many challenges, relief can be found in acceptance. According to Claire, “Finding acceptance for myself has been the best coping mechanism.” Accepting sensory sensitivities, advocating for accommodations, and appreciating their strengths often lead autistic people to genuine happiness and satisfaction. When asked what she would tell her younger self, 42 year old “Jane” replies, “diagnosis isn’t necessary, it’s also not an identity; find people with your abilities and awarenesses, and last: stay away from people who have a problem with what you are, including autistics who are deep in their anger or victimhood or entitlement.”
Though the voices of autistic women often go overlooked, more and more women are waking up to the fact that they lie somewhere on the ASD spectrum. With more autistic researchers advocating for their own needs, perhaps we can hope to heal the generational trauma of undiagnosed autism.