“You don’t look autistic.”
That’s what people say when I first tell them I’m on the spectrum. But I look autistic. The problem is that people, especially doctors, don’t know what to look for when it comes to recognizing and diagnosing autism in women and girls.
I am a teacher, screenwriter, producer, mother and woman with autism. The challenges I’ve had in getting my diagnosis lead me to believe that we need to create a more accurate standard autism test and better diagnostic criteria specifically for women and girls. This test and these criteria should be developed jointly by autistic women and psychologists who understand how autism manifests in them.
The current evaluation is a prime example of how diagnoses are intertwined with racial and gender bias. The latest diagnostic criteria for autism were established in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) from 2013. This version has very restrictive requirements for a diagnosis of autism, such as showing deficits in nonverbal communication, showing social problems, using repetitive speech, and difficulty maintaining relationships.
These diagnostic requirements are outdated and more specific to white males’ experience of autism. The DSM does not distinguish between subtypes of autism, including Asperger syndrome. This means that when women and girls visit their doctors with symptoms that make them think they have autism, they say they don’t meet the diagnostic criteria, leading to an incorrect or no diagnosis.
Developing a more accurate diagnostic test is not only a safety issue, but also a quality of life issue for many women who are quietly struggling to understand why they may be different, like me.
Growing up in the 1990s, I was different from other girls, but I never thought I had autism. I was on a different wavelength: I was attracted to philosophy and books that analyze the meaning of life, I was very literal and had a fascination for mathematics and numbers, as is usual with autism.
But less often, I disliked being touched, laughed at inappropriate times, ate the same food every day, and was often overstimulated by smells, textures, and sounds. We are beginning to find that these traits are more common in women and girls with autism.
I was certainly different, but because my features were more subtle than what we find typical of someone with autism, and because I had gotten used to masking these idiosyncrasies (girls with autism and ADHD are masters at that), nobody he suspected he was on the spectrum.
It wasn’t until 2020, when I was in my late thirties researching autism for my son, that I began to suspect that. That’s where my problems started. It took me a year to find a psychologist who offered adult testing, who understood women with autism, and who didn’t charge me a lot of money for an evaluation because my insurance wouldn’t cover the tests.
Most of the practices did not include the diagnosis of girls and adult women. After a year of searching for a trained, available, and affordable psychologist, I finally found one and was diagnosed with autism in 2021. I was told I had Asperger’s syndrome, but since the publication of DSM 5, the term had been merged with the definition definition of “autism spectrum disorder”.
Because of the narrow, gender-based diagnostic criteria, doctors often say we have a menstruation-related mood or anxiety disorder, as I was told, or they are given another completely incorrect label. Throughout history, women have been mislabeled as hysterics, when I think many were probably just neurodivergent and trying to fit into a neurotypical world.
Because of these mislabeling and lack of testing, we have long been ignored, misdiagnosed, or not diagnosed at all. Many of us end up self-diagnosing later in life, after years of wondering why we don’t feel comfortable in this world and in our own bodies.
Anxiety and depression are common in neurodivergent women, especially those who are undiagnosed. Women with autism are three to four times more likely to attempt suicide than neurotypical women. Comorbidities are also common in autistic women and can dramatically increase risk. Research shows that women with autism and ADHD are even more likely to attempt suicide.
We may seem like ‘the mother next door’, but our inner world tells a different story: a change of plans, a high-pitched sound, an explosion of pungent perfume, or a missing label on a sweater, and suddenly we are fighting to avoid it. a breakdown.
It’s exhausting, and if you don’t have the privilege of understanding why you feel that way, it can be maddening. Knowing that you have autism (along with other comorbid neurodivergens) and that you are prone to anxiety, depression, and burnout can help women who are suffering access the treatment and support they may need.
But better diagnostic criteria are just the beginning. We also need more resources, such as group therapy and support groups for women diagnosed with autism as adults. Educating teachers, doctors and psychologists on what to look for in girls and women and how to accommodate ourselves should also become the new norm.
Understanding autism in girls is also a safety issue, as these girls are three times more likely to be sexually abused. We tend to be more trusting and naive because we are often very direct and straightforward and expect others to be too. Recognizing the bad intentions and ulterior motives of others can be difficult for us. This can make us more vulnerable and prone to abuse.
Everyone deserves the opportunity to succeed and prosper, including women with autism. As more girls and women come to recognize that they are neurodivergent, having accurate testing and appropriate adjustments means we have a better chance of being the best we can be.
Zhara Astra is a screenwriter, producer, and professor at Arizona State University, where she teaches understanding neurodivergent women.
This article previously appeared in Scientific American.