Here is why autism diagnostic tests leave females behind
by Aspen Matis
When I was 10, sitting around a picnic table with a bunch of girls from camp, I made a mistake. They were laughing, all making fun of Linda, one of our counselors. Though I didn’t get the jokes, I mimicked their laughter. When Linda walked up to us, I immediately told her what everyone had been saying. I assumed she’d find it funny, too. But she didn’t smile. And the girls became upset and refused to talk to me for the rest of the summer.
I didn’t understand what I’d done wrong.
Throughout adolescence, I did my best to mirror the social behavior of my most “normal” peers, copying the way they walked and flipped their hair. In the hallways, I avoided eye contact. On sidewalks, I practiced smiling at strangers, and they often smiled back. Still, I felt like an alien impersonating a human.
In high school, my social challenges were compounded by increasing academic struggles. When fully focused, I read a page every eight minutes, so I was often up until 3 o’clock in the morning completing my homework. At my parents’ request, I underwent neuropsychological testing and was diagnosed with slow-processing speed. Further testing concluded that I had attention-deficit/hyperactivity disorder.
At 17, I told my parents I could “only be happy while hiking alone,” which concerned them deeply. I withdrew from people because navigating social interactions was so confounding and exhausting — but I craved connection and belonging.
On my second night of college, I was sexually assaulted by a boy I had just met. In an attempt to walk off the shame and pain, I fled school and went to the desert, where I could be alone. I then hiked from Mexico all the way to Canada — 2,650 miles, mountainous and quiet. On the trail, I enjoyed freedom from the need to pick out clothes or shower or make small talk.
Following my long trek, I struggled to support myself, the daily responsibilities of a full-time job too overwhelming. After withdrawing and reenrolling four times at three universities, I finally completed my undergraduate degree at 32 years old.
In a psychopathology class, we were shown the short film “What Women With Autism Want You to Know,” in which several women on the autism spectrum share their experiences with the condition. Watching, I learned that people with autism tend to have difficulty detecting subtle social cues; can become exhausted by interactions with new people due to the effort of “masking,” or suppressing natural quirks in hopes of fitting in; and are often very trusting, taking people at their word.
I was riveted. These strangers felt more familiar to me than any peer I’d ever known. They articulated my secrets, speaking of “odd” habits and misunderstandings common in my life. And from the way these women spoke and looked, I never would have known that any of them had autism. I’d always pictured “autistic” as someone who acted like Dustin Hoffman’s character in “Rain Man,” or a little boy unable to talk or make eye contact.
In the weeks that followed, I researched the condition obsessively, reading every scientific study I could find. When I learned that almost 90% of females on the spectrum will be sexually assaulted during their lifetimes (by age 25, I had been violated by four men), and 85% of autistic adults are unemployed or underemployed, the denial began to fade.
A month after I watched the film, I underwent a formal psychological assessment with a doctor who had treated girls and women on the spectrum. At age 33, I received an autism diagnosis.
Somehow, despite many signs and symptoms and multiple neuropsychological assessments, my autism had gone undetected. Why did the diagnosis take so long?
To my amazement, there was an answer to this question. For every three boys who are diagnosed with autism, one girl is diagnosed — but this is not because three times as many males have autism. Rather, the disparity is due to the reality that the majority of autism assessment tests and diagnostic criteria were derived from research studies involving the observation of boys, not girls. A consequential oversight, as autism can look quite different — and more subtle — in girls than boys.
The vast majority of women on the autism spectrum will never be diagnosed. Many are not diagnosed until well into adulthood, sometimes only when their own children are assessed. Or, as I experienced, they will be misdiagnosed and labeled with other cognitive conditions or intellectual disabilities. These errors are not harmless; misdiagnosis can lead to inappropriate or ineffective treatment, even exacerbating some of autism’s most debilitating symptoms.
The bottom line is Autism tests are failing girls and women, and assessment methods must be updated to narrow the diagnostic gap between the sexes.
All my life, I had viewed myself as lazy. As too sensitive and too easily overwhelmed. As slow and fatally awkward. As broken in a fundamental way. A song set to a different — faulty — beat. But the diagnosis has altered these self-perceptions, bringing me great relief.
And as my understanding of autism grows, I’ve learned that the condition is inexorably linked to the traits that I love most about myself. My inquisitive nature. My ability to hyperfocus on intense special interest projects. My tendency to see the best in people. Those on the spectrum often retain the innocent way children view the world before cynicism darkens their horizons — and I wouldn’t trade that sunny lens for the ability to notice subtle sarcasm.
Autism explains so many of my struggles, the quirks I’ve been ashamed of all my life — separating the morality from the neurology in a way that sets me free. There is comfort and belonging in knowing that I am not a defective horse but a normal zebra.
