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Combating Misdiagnoses and Marginalization of Women on the Autism Spectrum

Stories | 03.06.20

Dana Waters, Psy.D. ’00, ABPP, created the AWAKE PROJECT to educate and advocate for autistic women and girls. A clinical psychologist and Chicago Campus Doctor of Psychology in Clinical Psychology graduate, Waters shares how her time at Adler University contributed to her passion for autism advocacy.

When I earned my Psy.D. degree from Adler University, I had yet to identify the social justice cause on which I would focus my career. All I knew was that my education had ignited a fire in me to engage in advocacy and to serve the under-served.

After graduating in 2000, I moved to Seattle where I did my post-doctoral work at a large community mental health clinic. In 2003, I took a full-time, core-faculty, teaching position with the Washington School of Professional Psychology in their Psy.D. program, and started a small private practice specializing in complex trauma, lgbtqia+, chronic pain, and adults on the autism spectrum. In 2014, I joined the Psy.D. department at Antioch University, Seattle as core faculty and associate chair. I felt much more at home there as, like Adler, Antioch holds as its core a mission of social justice.

Finding a Rallying Cause

About 10 years ago, I had been doing research for a client with Asperger’s (now Autism Spectrum Disorder). I found a dearth of information specific to women and girls and I became puzzled at the lack of representation. To be clear, it’s not that there are no girls or women on the spectrum, it’s that most of the psychometric tests and diagnostic criteria have been developed and normed on males. I did not give up, however, and began to find a few resources in the public realm such as blogs and books about personal experiences. Clearly evident was how neurodiversity manifests differently in women than men.

I learned that girls tend to have better inherent social skills and experience a lot more pressure to present in socially acceptable ways than do boys. As such, girls learn to hide their true selves from an early age and engage in what is now commonly called “masking.” Masking is a suppression of recognizable aspects of autism, such as stimulatory behavior (“stims”) like rocking, hand flapping, and other visible self-soothing behaviors. I learned that stims are used to regulate sensory overload. In fact, newer research shows girls are pressured more than boys to suppress these behaviors.

We also know that girls engage in different “special-interest” behaviors than boys. For example, girls tend to play more quietly, alone, and with things like stuffed animals and figurines, or tend to have obsessions about animals—all things seen in neurotypical girls, but with a greater intensity and immersion. Girls are also overlooked because they form friendships more than boys and learn to make eye-contact, both of which tend to be lacking in autistic boys.

In researching about girls and women on the spectrum, I began to see myself in a lot of the descriptions. I kept my personal research secret for years, even from my wife. It was not until a graduate of mine had shared his own journey of “coming out” as autistic that I gained enough courage to do the same. I consulted with several autism-specialist colleagues and completed a slew of self-administration tests.

At age 47, I diagnosed myself and then received a professional diagnosis at at 53. I had been a psychologist for nearly 20 and had no idea. It was both liberating and terrifying. “Is it OK for a psychologist to be on the spectrum?” I wondered. I had a lot of fears about letting my revelation be publicly known, especially at work. However, the more I learned about the misdiagnoses, marginalization, and oppression of autistic women, the more my fear faded and I knew I could no longer indulge in hiding. As a pluralistic, feminist, Adlerian psychologist, I was angry and motivated to promote change.

Becoming an Advocate for Autistic Women

I made the decision to begin my work as an autistic educator, advocate, and researcher by founding the TheAWAKEProject.org in 2019 (Autistic Women’s Advocacy, Knowledge, & Empowerment Project).

Social media is an essential outreach tool to autistic people as they thrive in the online environment as it bypasses barriers such as social anxiety, accessibility, and sensory issues. Thus, AWAKE focuses on psychoeducation delivered in online and social media platforms such as Facebook, and Instagram. Specifically, the website provides selected, recommended books, peer reviewed, and special interest articles. The Facebook and Instagram pages provide women-focused, autism content in the form of daily, original, understandable, scientifically-based informational memes as well as sharing of other vetted articles and memes with accompanying explanations for a lay audience.

Learning the Power of Advocacy

In keeping with the idea of “nothing about us without us,” those of us in the community are pushing back against the pathologizing, cure-seeking majority that is perpetuating misinformation and marginalization of autistic persons. We need to find the sweet-spot between providing necessary support to a developing, autistic brain without traumatizing folks by forcing them to fit into prescribed, “socially appropriate” behaviors. It is time for the system to change rather than the person.

As a genderqueer, gay, autistic woman, I have experienced tremendous adversity, but I have also learned the power of advocacy. I’ve seen the magic of social change when oppressed groups rise up to be heard. I always remembered the lesson learned from one of my classes at Adler wherein we discussed Dr. Seuss’ “Horton Hears a Who”: that one voice can make a difference, especially when joining an already raucous choir. It is my hope that my voice, when added to the voice of the neurodiversity community, can promote acceptance and change, and it’s thanks my social justice roots that I know how to do so.

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