When novelist and autistic self-advocate Lauren Melissa Ellzey sat down to write her novel “Streamline,” she made a conscious decision to not call offline “real life.” Ellzey’s protagonist, Lune, represents a growing recognition that for women with autism, their communities formed online are real.
“Prior to going online, I didn’t really know more than two autistic people, and they didn’t live near me, so it was very important to me to be able to connect in order to feel less alone in my differences and to also form positive identity around my disability,” Ellzey said. “For many autistic people and many disabled folks, online is real life.”
A study published in JAMA Network found that between 2011-2022, there was a 315% rise in adult females diagnosed with autism. Ellie Taylor, an autistic PhD candidate in the USC Chan Division of Occupational Science and Occupational Therapy, attributes this increase to users on social media providing a look at the “lived experience” of an autistic woman. According to Taylor, women historically have been underdiagnosed with Autism because the traits an autistic woman displays are typically different from the diagnostic criteria that were based on observations of young boys with autism.
“A lot of what we know about autism was formed off of what’s called the extreme male brain theory. It posits autism as just a state of excessive masculinity,” Taylor said. “Social media spaces, and particularly the sharing of lived experience, has really reshaped and become the primary resource for many autistic people who don’t fall into that little white boy or adult white male autism boxes.”
With a diagnosis in play, platforms like Instagram and TikTok often become invaluable in forming communities for autistic women. There are few spaces for adults with autism to connect with one another in person. Alondra Rogers, an autistic therapist who specializes in adults with neurodiverse adults, has found that while social media can be isolating for a neurotypical individual, it is vital for an autistic individual.
“I have clients who don’t have any people in their everyday life, because it’s so difficult to maintain relationships, to start relationships. So online spaces are their third place,” Rogers said. “It absolutely does bring autistic people together. It creates connections.”
The communities may focus on a special interest, or may simply be a place for autistic individuals to share tips with one another. A study published by the University of Washington analyzing interactions under the #ActuallyAutistic hashtag on Twitter found that 53% of the posts were sharing personal anecdotes, and 74% of the Tweets were supportive. Specifically, online autistic women do not have to “mask:” a term that refers to the phenomenon of those with autism hiding their behaviors to meet the social expectations of non-autistic folks.
“For many people, it’s the path to discovering their diagnosis, and then it is also for sensemaking to learn about their behaviors, their traits, for strategies. I see a lot of sharing on how to get accommodations, navigate systems, how to do subtle stims in public to meet sensory needs without invoking violence,” Taylor said. “Social media creates safe spaces to unmask.”
Both Rogers (@dr_alondra_rogers) and Ellzey (@auntienelle) use their Instagram platforms to connect with and share ideas with other Autistic individuals. Rogers typically shares calls to mutual aid, stories from her life as an autistic woman, and facts about the history of autism. Ellzey posts infographics about her personal experiences and tips on handling obstacles like masking or sensory overload.
“Whenever I write a post, actually my audience that I have in mind is fellow autistic individuals,” Ellzey said. “My main focus has always been like breaking down isolation and building community.”