By Marina Sarris

Date Published: March 26, 2024

Sarah Sanders should have been part of the autism boom.

She was born in the 1990s, when autism diagnoses in children began spiking. She had many of the textbook signs. She learned to talk late. She flicked her fingers in front of her eyes. She shrank from noise, bright lights, and certain textures. She struggled to make friends.

But no one suspected autism in the quiet girl who never caused a fuss.

Year after year, her parents tried to convince her school that she needed more than the speech therapy she was getting for her pronunciation. But they got the same response, recalls Sanders, 29, a participant in the SPARK autism study.

“The teachers would say to my parents, ‘She’s a really good kid, she’s very quiet, and she’s not disruptive. So we think she’s doing fine.’ But my grades obviously didn’t show it,” Sanders says. Despite low grades, teachers in her small, rural community in New York state passed her year after year.

She somehow eluded an autism spectrum diagnosis until she was 19. That’s when a community college counselor referred her to a mental health clinic for an evaluation. “When I got the diagnosis, it was actually a relief. I finally felt like I wasn’t alone,” she says. “The signs were always there.”

Why did it take so long?

Diagnosing Girls on the Autism Spectrum

Sanders is not alone. Girls are diagnosed later ─ and less often ─ than boys. Autistic boys outnumber girls by almost 4 to 1, and boys are diagnosed, on average, four months earlier than girls.

Some researchers wonder if some autistic girls are simply being missed by schools and doctors. Like Sanders, those girls may be quieter and better at hiding their social differences than autistic boys.

Sanders may have tried to hide the traits that made her a target of teasing. She talked less, for example, when classmates made fun of her for mispronouncing words. But she left many clues along the way.

When she was in first grade, Sanders recalls, a teacher watched her flick her fingers near her eyes. “Why are you doing that?” the teacher asked. Sanders replied, “I don’t know.”

Repetitive motions like rocking or finger flicking are an autism trait. Some autistic people say these movements can be calming, particularly when they are being bombarded by things that trigger their sensory sensitivities. Sanders eventually substituted her finger movements for something that was less likely to attract attention: tapping or wiggling a pencil.

Sanders also found other ways to help herself. She spent hours bouncing on a trampoline and rolling on a large exercise ball at home. Those happen to be activities that are sometimes used to help autistic children regulate their sensory system and focus their attention.

She made some friends in elementary school. But her need to have things a certain way ─ an autism trait called “insistence on sameness” ─ caused a problem when a friend used her favorite chair and silverware while visiting her home.

In middle school, the friends she had dropped away. They became interested in dating, boys, and makeup, while Sanders still enjoyed toys, video games, and the trampoline.

Undiagnosed Autism in the Teen Years

The teen years can be difficult for anyone, but they seem especially so for those on the autism spectrum. The complex social world of tween and teen girls can be baffling.

“In middle school, I became really isolated. From then until high school, I really started to feel alone and depressed, and my anxiety started to get really bad,” Sanders recalls. Autistic people are more likely to have anxiety and depression than other people, according to research.

Throughout it all, Sanders always had animal companions. She had a duck that followed her everywhere, a dog, and Meow, a stray that she turned into a housecat. “It was just me and Meow. We did everything together.” She took walks with Meow and collected everything she could find about cats, including a cat encyclopedia and board game.

“My animal friends were definitely the best of friends growing up,” she says.

But Sanders did not give up on human friends. At 15, she taught herself American Sign Language (ASL) so she could communicate with a deaf girl in her high school. The two became friends, and still are today, more than a decade later. ASL played into her strengths as a visual learner with a good memory. “I felt I was better at sign language than I was at talking,” she says.

The First Evaluation

Sanders still struggled with schoolwork. A high school teacher recommended that she be tested for learning problems, as her parents had urged for years. As a result of the evaluation, the school allowed her to take more time on tests. But there was no talk of autism, Sanders says.

Her autism diagnosis came after she graduated. By then, it was too late for the academic help, therapies, and social groups that autistic children often receive in public schools.

Finding an Autism Community

But it was not too late to learn about the autism community. Sanders reached out to other autistic people online. That’s how she heard about SPARK, the largest study of autism. She joined in 2016 and submitted a saliva sample so researchers could find more genes linked to the condition.

She also has taken part in about two dozen studies through SPARK Research Match, which matches people to autism studies by U.S. and international researchers. For one recent study, she wore a device to monitor her sleep, a common problem in autism.

She joined other studies that mainly involved completing online surveys. “I like doing the surveys because I want to help researchers know about how everybody on the spectrum is different,” she says.

Given her long road to diagnosis, she would like researchers to examine whether autism looks different in girls. “More focus needs to be on girls and women through all stages of life,” she says.

For decades, researchers could not find enough autistic girls to include in their relatively small studies. Much of what we knew about autism came from studies of boys, usually of European descent. SPARK has helped change that. Its 139,275 autistic participants include 38,830 girls and women, whom researchers can invite into their studies.

Autistic participants in SPARK also include more than 53,500 people of color, whose perspectives and experiences help shape research. Sanders, who is part Mohawk, hopes that research will benefit underserved communities.

Becoming an Autism Self-Advocate

Sanders recently joined the SPARK Community Advisory Council, which provides input to the study. She also volunteers sorting books at a library, an oasis of calm and quiet for someone with sensory sensitivities. And she is taking online classes in cybersecurity.

Like many autistic adults, who have a high unemployment rate, she has found it hard to find work. It’s not the job itself that causes difficulties, but rather all the social and sensory challenges of being in a workplace, says Sanders, who has an associate degree. She hopes researchers gather data on this and other challenges facing autistic adults, along with their strengths.

Her advice for anyone working with an autistic person: “Don’t underestimate our abilities and take time to get to know us, because we’re all unique.”

Photo provided by Sarah Sanders.