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Invisibly Autistic: Women and the Autism Services Crisis

Recently, an autism professional shared a story she thought was funny: her friend wished to be born in the next life as a woman with autism, because there are so many opportunities for us—supposedly since we are rarer than autistic men. When I heard this story, I was angry. I’d like to counter—what opportunities? As a female-bodied person diagnosed with autism spectrum disorder (ASD), I notice that there’s a lack of knowledge about, and services for, female-assigned people on the autism spectrum. (I am referring to people by biological sex assigned-at-birth to recognize that within our community, people take on a variety of gender identities besides “woman”, yet our female bodies and other people’s perceptions of us influence the kind of services we can access.)

In news articles, stock photos, and films, why is the image of autism more likely to be a frowning, disengaged boy than a smiling, engaged woman? Perhaps it’s because autism is portrayed as an embodied masculine experience. The oft-cited statistic of one girl with autism to every four or five boys is problematic. It’s misleading to claim that boys are four or five times more likely to have autism than girls are; rather, boys are far more likely to be diagnosed with autism. In other words, not every person with autism is diagnosed.

So what barriers may be getting in the way of women’s diagnoses? First of all, not everyone in the spectrum can afford a diagnosis. A neuropsychological evaluation can run in the thousands, but is not necessarily covered by insurance. In 2013, the poverty rate for disabled Americans (28%) was twice that of nondisabled Americans (13%), and women are more likely to live in poverty than men. For women with disabilities, that’s a double-whammy. Females are often diagnosed with autism later than males are, making issues of cost and access to diagnostic evaluation services even more acute for women.

As long as money is involved, obtaining an official autism diagnosis may be out of the question for poorer women on the spectrum. Research studies sometimes offer free or low-cost diagnoses, yet they may be inaccessible to female-assigned autistics. For instance, I was interested in participating in a study for adults on the autism spectrum, but my female body was an exclusionary factor. It was just for the guys. Unfortunately, only studying males creates male-centric knowledge about autism. Then evaluators, who have the power to diagnose, might only learn to see male patterns. Let me be clear that I believe that the differences in these patterns are socially created. Yet the way autism professionals interpret culturally-constructed gendered behavior differences can determine whether or not someone gets diagnosed with ASD.

With fewer diagnosed women, there are fewer research studies including us as participants. When fewer research studies widen the idea of autism, professionals have less knowledge about behavioral diversity among autistics. And so the cycle begins again. What is the cost? A woman who does not fit “male” autism patterns might not receive a needed diagnosis. Without an official diagnosis, she faces a barrier to services. An autism spectrum diagnosis becomes important when it allows women to receive services that help us become happier and more successful.

Antiquated attitudes about gender and disability dominate the autism discourse and influence our access to diagnoses and services. But as more people recognize girls and women can and do have autism, we can use our existence to help revolutionize services. Together, the autism community can create opportunities for women, gender and sexual minorities, racial minorities, and lower-income people on the autism spectrum. We can work against the misogyny and heterosexism that pervade some male-dominated autistic spaces. We can invent screening processes that better identify autistic individuals who aren’t just male, white, affluent, and English-speaking—without relying on stereotypes.  Taking these steps will validate that women with autism exist, and that the autism community has a responsibility toward underserved autistic populations.

Emily Brooks

Emily Brooks is a writer on the autism spectrum, an advocate for social justice and works with disabled young people in New York City. Currently pursuing her MA in Disability Studies, Emily is passionate about affecting change in the disability and LGBTQ communities. To read more work or get in touch, please check out www.emilybrooks.com or follow Emily on Twitter at @emilybrooks89.

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