Video: How Being Female Affects the Presentation, Experience, and Perception of Autism

Frist Center communications coordinator and self-advocate Claire Barnett presents at the Tennessee Disability Mega-Conference in May 2020 (virtually) about the unique elements of being a woman on the spectrum. Watch the 30-min presentation/Q&A at this link!

Diagnosis

The ratio of males to females on the spectrum is 4:1 – and among those with “high functioning” autism, the ratio is 10:1. This may indicate that autism truly occurs more commonly in men than women. It may also point to a disparity is diagnosis, particularly for women with low support needs and average or above average intelligence.

Even from youth, the diagnostic tools used to identify autism are more likely to accurately identify males. That may be because these tools were largely developed by observation of boys and men with autism.

Clinicians note that girls and women on the spectrum display more subtle signs of ASD. They are more likely to have a sophisticated social mask, and to know the “right” answer to give when talking with a psychologist or psychiatrist. Therefore, only females with more pervasive and impactful difficulties may be easily identified by professionals.

Social Camouflage

For one, women are more likely to engage in heavy masking behaviors. This is also called social camouflage. Self advocate Niamh McCann discusses the impacts of masking in her TEDx talk, “Copy and Paste.”

There are several theories about why autistic females are more likely to mask. One possible explanation is that the social expectations of women in general are more complex. Thus, females on the spectrum must prepare more thoroughly for social situations, or risk ostracism. Another possibility is that autistic women have more intrinsic motivation than men to be social. As a result, they invest more time and energy in camouflage strategies to help them fit in.

Common Co-morbidities

Researchers also found that women have a higher rate of certain co-morbid conditions – particularly anxiety, depression and eating disorders.

High anxiety and depression may largely be the result of desiring social inclusion but failing to obtain it. These mental health struggles may also be brought on by sensory challenges, difficulty at work or school, or disrupted routines.

Eating disorders, and particularly anorexia, are more common among autistic women than neurotypical women. Theories about the link relate to social isolation, a desire to control one’s environment, and already elevated levels of anxiety.

Resources for Women

The Autistic Women & Nonbinary Network (AWN) advocates on behalf of all non-male people with autism. AWN does advocacy work, educational outreach, financial sponsorship of charitable events and hosts a blog focused on the female autistic experience.

The Asperger/Autism Network (AANE) has a specific collection of information on the female profile of autism, and The Art of Autism also has a section dedicated to women on the spectrum.

Well-known female autism advocates include livestock scientist and professor Dr. Temple Grandin and teenage climate activist Greta Thunberg.

There are also several books out there about the female experience of autism. Here are a few we recommend:

Autism in Heels: The Untold Story of a Female Life on the Spectrum (Jennifer Cook O’Toole)

Spectrum Women (Barb Cook)

Camouflage: The Hidden Lives of Autistic Women (Sarah Bargiela)

Odd Girl Out: My Extraordinary Autistic Life (Laura James)

Research on Women & Autism

Bargiela, Sarah et al. “The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.” Journal of autism and developmental disorders vol. 46,10 (2016): 3281-94. doi:10.1007/s10803-016-2872-8

Hayward, Susan M., et al. “‘I would just love to be myself’: What autistic women want at work“. Autism in Adulthood. Dec 2019.297-305. http://doi.org/10.1089/aut.2019.0020

Hull, Laura, et al. “Gender Differences in Self-Reported Camouflaging in Autistic and Non-Autistic Adults.” Autism, 2019, p. 136236131986480., doi:10.1177/1362361319864804.

Lai, Meng-Chuan, et al. “A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions.” PLoS ONE, vol. 6, no. 6, 2011, doi:10.1371/journal.pone.0020835.