“You don’t look autistic.”
This is what people say when I first tell them I’m on the spectrum. But I do look autistic. The problem is that people, especially medical professionals, don’t know what to look for when it comes to identifying and diagnosing autism in women and girls.
I am a professor, a screenwriter, producer, mother and a woman who has autism. The challenges I have had in getting my diagnosis lead me to believe that we have to develop a more accurate standard autism test and better diagnostic criteria specifically for women and girls. This test and these criteria need to be co-created by autistic women and psychologists who understand how autism manifests differently in women and girls.
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The current assessment is a prime example of gender bias in medicine and an example of how diagnostics are rife with gender and racial biases. The latest diagnostic criteria for autism were set forth in the 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This version has extremely restrictive requirements for an autism diagnosis, such as showing deficits in nonverbal communication, displaying social issues, using repetitive speech, and difficulty maintaining relationships.
These diagnostic requirements are outdated and more specific to the white male experience of autism, and until recently, most psychological testing done to diagnose autism was developed using the experiences and symptoms of cisgender white males. The DSM doesn’t distinguish between subtypes of autism, including Asperger’s syndrome. This means when women and girls visit their doctors with symptoms that lead them to think they have autism, they don’t fit the diagnostic criteria, leading to no diagnosis or an incorrect one.
Developing a more accurate diagnostic test is an issue of safety, as well as quality of life, for so many women silently struggling to understand why they might be different, including myself.
Growing up in the 1990s, I was different from other girls, but I certainly never considered I had autism. Sure, I operated on a different wavelength: I gravitated towards philosophy and books that dissected the meaning of life. I was extremely literal, and had a fascination with math and numbers, as is common in autism.
But, less commonly, I didn’t like to be touched, I laughed at inappropriate times, ate the same foods every day, and was frequently overstimulated by smells, textures and sounds. We are starting to discover that these traits are more likely to occur in women and girls with autism.
I was undoubtedly different, but because my traits were more subtle than what we typically consider a person with autism to have, and because I had become accustomed to masking these quirks (girls with autism and ADHD are masterful at doing this), no one suspected I was on the spectrum.
It wasn’t until 2020, when I was in my 30s and researching autism for my son, that I began to suspect I was on the spectrum. There began my troubles. It took me a year to find a psychologist who offered testing for adults, who had an understanding of women with autism, and who wouldn’t charge me $5,000 or more for an assessment, since my insurance wouldn’t cover the testing.
Most places I called were clueless when it came to diagnosing adult women. These psychologists had little experience diagnosing girls as well. After a year of searching for a competent, available and affordable psychologist, I finally found one and got a diagnosis of autism in 2021. I was told I had Asperger’s syndrome, but that since the release of the DSM 5, the term had been swept into the general definition of “autism spectrum disorder.”
Because of the narrow and gendered diagnostic criteria, we’re instead often told by the doctors that we have a menstrual-related mood disorder or anxiety, as I was told, or we’re slapped with some other grossly inaccurate label. All through history, women have been mislabeled as hysterical, when I think many were likely just neurodivergent and trying to fit into a neurotypical world.
Because of these false labels and the lack of testing, we have historically been overlooked, misdiagnosed or undiagnosed entirely. Many of us end up self-diagnosing later in life, after years of wondering why we feel so out of place in this world and in our own bodies.
Anxiety and depression are very common in neurodivergent women, especially those who remain undiagnosed. Women with autism are three to four times more likely to attempt suicide than neurotypical women. Comorbidities are very common in autistic women as well and can dramatically enhance the risk. Research indicates that women with autism and attention deficit hyperactivity disorder have an even higher chance of trying to commit suicide.
We may look like “the mom next door,” but our inner world tells a different story: a change in plans, a high-pitched sound, a blast of pungent perfume, or a stray label in a sweater, and we’re suddenly struggling to avoid a meltdown.
It’s exhausting and if you don’t have the privilege of understanding why you feel this way, then it can be maddening. Knowing you have autism (along with other comorbid neurodivergences) and that you’re prone to anxiety, depression and burnout can help suffering women get access to the treatment and support they may need.
But better diagnostic criteria are just the beginning. We also need more programs, like group therapy and support groups for women who are diagnosed with autism in adulthood. Training teachers, doctors and psychologists on what to look for in girls and women and how to accommodate us should also become the new standard.
Understanding autism in girls is also a matter of safety, as these girls are three times more likely to be sexually abused. We tend to be more trusting and naïve, because we are often very direct and straightforward and expect other people to be the same. Recognizing ill intentions and ulterior motives in others can be difficult for us. This can make us more vulnerable and susceptible to abuse.
Every person deserves the opportunity to succeed and rise to their greatness, including women with autism. As more girls and women recognize they are neurodivergent, having accurate testing and the accommodations means we have a better chance to do our best.