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Autistic women: From invisibility to self-acceptance

Actress Daryl Hannah, singer Susan Boyle and scientist Temple Grandin have more in common than being famous, powerful women; they are all autistic, and they’re not alone.

Autism Spectrum Disorder (often shortened to ASD or autism) is, according to the American Psychological Association, a “pervasive neurodevelopmental disorder characterized by impairments in social communication and restricted, repetitive patterns of behavior, interests or activities.” ASD is most commonly diagnosed in boys and men and thought of as a “boy condition.” The scientific community, however, is only beginning to research the experiences of autistic girls and women, and for this reason, autistic women often go unrecognized. Though the scientific community may just be beginning to research autistic women, autistic women themselves are not a new phenomenon and have existed throughout history just as autistic men have.

Though this article is centered around women in particular because of the availability of research, both preliminary research and personal accounts from autistic people have suggested that autistic people are actually more likely to identify outside of the gender binary than their non-autistic counterparts. Most scientific research about gender differences in the manifestation of autism is largely limited to a cisgender binary framework. Of course, the reality is that autistic people can have any gender identity, and although the scope of this research is narrow, there are many non-binary autistic writers, artists and creators who share deep insights about their experiences. There are a variety of sources that one can go to to learn more about these creators, such as Amethyst Schaber’s Tumblr blog Neurowonderful and YouTube series Ask an Autistic. TikTok creators Aris (@saltybitters) and Evelyn Jeans (@evelynjeans) both create honest and relatable content about being autistic and non-binary as well as humorous and creative videos.

The under-recognition of autistic women signifies more than just a gap in research; it carries real societal repercussions, such as feelings of shame and alienation and lack of access to disability-related services and accommodations. “Abnormal” traits may be considered autistic for a boy or man, but only seen as a failure to perform an expected role in society for a girl or woman. 

In a 2016 study published in the Journal of Autism and Developmental Disorders, researchers Sarah Bargiela, Robyn Steward and William Mandy studied 14 young autistic women. The study focused around women, in particular, suggesting that women are especially prone to internalizing their struggles and “masking”, or attempting to mimic the behavior of their neurotypical peers. Most reported some level of masking, with one woman reporting, “I honestly didn’t know I was doing it [social mimicry] until I was diagnosed, but when I read about it, it made perfect sense. I copy speech patterns and certain body language.” 

Blogger Alice Farion writes about her journey to understanding herself as an autistic woman:

“I pretend that I am normal, that interactions are something natural for me … I kept having breakdowns, and panic attacks until I reached the bottom. Emotionally and nervously exhausted, not able to get out of bed for days, wondering why life had always been so hard, why I felt so lonely and isolated from my peers and why it seemed that I was the only one who couldn’t manage. Why?

The answer is simple and complicated. Simple because it is one word: autism. Complicated because this word has many meanings.”

Understanding autistic women as individuals and the struggles they face in society is crucial to mobilizing access to ASD-specific resources and fostering acceptance in the lives of autistic women. What once was a largely erased demographic of people is coming to the forefront in the scientific community and public eye, and autistic and non-autistic people alike can benefit from understanding these experiences.