The Abstract, Cool World of Eliza
Marina Sarris
Date Published: March 25, 2025
As a young girl, Eliza often lived in her own world. It was a place filled with thoughts of “absurd, abstract, crazy, cool things that I can’t even describe in words,” she says. While lost in thought, she could still hear her teacher’s voice, somewhere in the distance.
Her teachers and parents took notice of her differences. She was evaluated and diagnosed with ADHD and dyslexia. But she knew there was more.
She felt exhausted just getting through the day. She was bothered by sounds, crowds, and clothing textures. Social situations felt overwhelming. Any change in plans or schedule could trigger an emotional outburst or meltdown. She wondered why.
She did not get an answer until her early 20s, when she was diagnosed with autism. That’s when she realized that the distress she felt during childhood was from trying to fit into a world that she experienced differently from others.
Eliza is one of many autistic women in the SPARK autism study whose autism went undiagnosed during childhood. More than 20,000 independent autistic adults, two-thirds of them women, have joined SPARK. The most frequently reported age of diagnosis for independent adults is 36, according to SPARK data compiled in 2024. Yet autism can be reliably diagnosed by age 2.
Researchers wonder if an autism diagnosis eludes some girls because their traits and coping skills look different than expected. Some research also suggests that girls are more likely than boys to try to hide their autism, which is called masking or camouflaging.
“I learned to mask early on. It’s extremely exhausting and contributes to a continuous cycle of burnout. That’s a big part of my passion of learning about women on the spectrum,” says Eliza, 27, a medical-surgical nurse in New Jersey.
That passion led her to SPARK in 2024. The large number of participants in SPARK makes it easier for researchers to learn more about autistic girls and women. More than 45,000 autistic people assigned female at birth have joined SPARK.
Eliza sent in a saliva sample to SPARK for DNA analysis. She wants to help researchers learn more about how autism affects women. “It makes me happy to be a part of it,” she says.
Growing Up Undiagnosed
Growing up without a diagnosis was stressful, Eliza says, even though she was lucky to have a supportive family and attend good schools. She had a special education plan and accommodations beginning in elementary school. Her family took her to see a psychologist to help with her emotions.
But no one suspected autism. She did not fit neatly into common perceptions of autism at the time. She did not have a speech delay, nor did she flap her hands or rock. Autism was believed to be particularly rare in girls like Eliza, who could earn good grades and make friends.
She did not talk at school for a few years of elementary school, a condition called selective mutism. Selective mutism is believed to be related to anxiety, sensory problems, and sometimes autism.1
Teachers noticed her inattention in class, but Eliza describes it as a kind of daydreaming. “I was in my own world and loved it and didn’t care,” she recalls. Researchers have studied intense daydreaming in autistic adults in SPARK.2
She also faced medical problems. At times, she had to miss weeks of classes because of Crohn’s disease, a chronic inflammatory bowel condition.
Autism Under the Surface
Although perhaps less obvious, she did have common autistic traits, such as sensory sensitivities and a need for things to stay the same. She also had intense interests, another trait. “Whatever it was that I liked, I did it very intensely.” She focused on dancing ballet and playing violin. She became absorbed with running in high school and ran four half-marathons in a row, before moving on to another interest.
She learned to copy the actions of other girls to fit in. By her late teens, the stress of fitting in, and of being misunderstood, began to affect her mental health.
She began searching online for answers. “I had been struggling and looking for a diagnosis my whole life,” she explains. She read accounts of how autism affected girls and women, who make up just 20 to 25 percent of all people with the diagnosis.
Eliza returned to the psychologist she had seen while she was growing up. After a neuropsychological exam, she learned she was autistic. The diagnosis helped her make more sense of her childhood and of herself.
“It basically helped me be a better nurse because I understood myself better,” she says. At the hospital where she works, she is sometimes assigned to patients whose brains function differently — due to autism, ADHD, or other conditions — because she works well with them.
A Hope That Autism Research Will Lead to Answers
She hopes that researchers will study other medical conditions that may affect autistic women, such as autoimmune inflammatory diseases and Ehlers-Danlos syndrome, which can affect motor coordination. She is interested in learning if autism affects motor skills in girls and women. Others are interested in that topic. A research study found that autistic girls in SPARK were more likely to walk later than autistic boys.
She would like to see greater understanding of all autistic people, regardless of where they fall on the spectrum. Some people discount her challenges because they can see her strengths, she says. In the same way, people sometimes discount the strengths of other autistic people because of their challenges. All autistic people have both strengths and challenges, she says.
“At my job, I’m functioning and masking, but on my off days, I’ll sleep for three days at a time. Or someone will change something, and I’ll short circuit for a few hours.”
“It’s very exhausting, and I try not to be burned out. But it’s always around the corner.”
Interested in joining SPARK? Here’s what you should know.
Photo credit: Eliza