Here’s the link, https://www.scientificamerican.com/article/we-need-better-diagnostic-tests-for-autism-in-women/ and for those of you who struggle with links in this blog, I’m going to reprint the entire article. Credit to Zhara Astra, Scientific American, April 2022. “Zhara Astra is a screenwriter, producer and a professor at Arizona State University where she teaches a course she created on Understanding Neurodivergent Women.”

Although I didn’t write this article, I could have. Except, unlike Zhara, I haven’t pursued a diagnosis. After coaching autistic adults for over 20 years now, I know all too well how frustrating and likely fruitless it would be.

We Need Better Diagnostic Tests for Autism in Women

Diagnostic criteria are developed using white boys and men, failing to serve many neurodivergent girls and women, By Zhara Astra on April 7, 2022

“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. 

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.”

Thank you Zhara, for writing about this in such a clear, simple, and straightforward manner!

Also, in response to a comment on her LinkedIn page, Zhara says, “My next article will address transgender and non-binary people. We discuss this in my class, but it didn’t make it in this article because it deserves an entire article dedicated to just that. But basically in my research I discovered that in brain scans (which is what I first used to affirm my own autism)—transgender women’s brains reflect the brains of women assigned female at birth, and non-binary brains showed a combination of both. This is huge in affirming the transgender human experience and needs to be more widely discussed. I also found that transgender people are 3-6x more likely to be autistic, but many reported being overlooked because the focus from parents, doctors, and educators was predominantly on their gender. I’m hoping to conduct more research on this in the future!”

I am looking forward to that next article! Unfortunately Zhara teaches up in Tempe at ASU rather than down here in Tucson at UA, otherwise I’d be banging on her office door looking for my new best friend.

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