With a friend’s help, Maria Sturgess discovered the reason she found it hard to fit in.
It took 21 years for Maria Sturgess to understand why she was different.
At 2, she was discussing the life cycles of insects with her mother. At 4, she was reading chapter books. While gifted academically, Maria refused most foods, couldn’t stand clothes with seams, and became inconsolable if bumped in a crowded store. She loved cats but had trouble making friends.
When her parents consulted doctors and psychologists, they were told their daughter suffered from anxiety and would outgrow her food aversions. Teachers said she was bright but self-centered.
Then, at the beginning of her senior year of college, Ms. Sturgess met Leigh Dally, a fellow member of the color guard and a psychology major. Ms. Dally noticed that Ms. Sturgess was unusually bothered by bright lights, struggled to follow verbal instructions and missed subtle, nonverbal cues—the glances, facial expressions and nods that are so much a part of communication. It wasn’t shyness. Ms. Sturgess seemed unable to click with others, Ms. Dally thought, and asked her if she had ever been evaluated for autism.
A few months later, Ms. Sturgess was diagnosed with what is now called autism spectrum disorder, a developmental disability typically characterized by social and cognitive impairments. Instead of being troubled, she was relieved. For most of her life, she had tried to hide her quirks and be like everyone else. “I never had cause to think I was any different than anyone else, and so with every new failure, I had to conclude I was at fault,” says Ms. Sturgess, now 27, in one of several long written exchanges, her preferred way to communicate. “When I got my diagnosis, I started to let go of my need to ‘just be NORMAL!’ ”
Autism spectrum disorder has always been difficult to diagnose. There are no medical tests or single distinguishing traits. Some people with autism need 24-hour care, and others are college graduates. One person with autism may talk incessantly about dinosaurs, and another may be unable to speak. People with autism generally have difficulties relating to others, but many are happily married with children.
Today, 1 in 68 children is diagnosed with autistic behaviors. When Ms. Sturgess was born, the criteria were narrower, and doctors weren’t as familiar with the disorder.
Women, in particular, have been overlooked. A 2015 study using an online registry of 50,000 people, showed that higher-functioning girls are often diagnosed at a later age than higher-functioning boys, who tend to have more noticeable repetitive-behavior issues, such as flapping their hands. Researchers now recognize subtler shades of the disorder. In the past, if a girl was withdrawn socially, it was considered a female trait. “More people are starting to say ‘maybe it was autism,’ ” he says.
For Ms. Sturgess’s parents, the diagnosis carried ambivalence. It answered questions about her behavior but also left them feeling guilty. “As a mother, you tend to beat yourself up. Why didn’t I know?” says Nancy Briski, a retired pest-control company owner. She and Ms. Sturgess’s father are divorced. If she had known, Ms. Briski says, she wouldn’t have argued with her daughter about her messy room or been so frustrated when she couldn’t keep track of receipts. She would have found autism specialists.
Ms. Sturgess was different as a child, though not alarmingly so. She lined her dolls in rows, instead of playing with them, and sat with the teachers at recess. She didn’t talk about feelings or say she was sad, or happy or mad, but that didn’t seem all that strange. Certain socks irritated her, so her mother found ones that didn’t. The big ongoing concern was food. She ate cheese, eggs, bread, crackers, peanut butter, noodles, and little else. Doctors, though, weren’t worried, her mother says. In grade school, Ms. Sturgess tried to fit in, copying the way a popular classmate wrote the letter M, and pretending to like chocolate because others did. Secondary school was harder. She wasn’t interested in makeup, boys or dating. She liked paint-by-number sets.
“I just always accepted that part of her,” says her mother.
Ms. Sturgess graduated from school a year early, hoping college would be a better fit. It wasn’t. T her year at Grove City College she lived in a single room. She had made friends over the years, but they drifted away. She couldn’t converse comfortably and often interrupted others. She didn’t understand that texting or calling too often could turn people off.
“Maria could be hard on friends,” her mother says. “She needs to be in constant communication and physically in their presence. Most young women that age get tired of it and walk away.”Ms. Dally didn’t. “Leigh understood her in a way that no one else did, including me,” says Ms. Briski.
Ms. Dally remembers meeting Ms. Sturgess. Everyone in color guard was talking about summer high points. Ms. Sturgess, who had joined the color guard in an effort to make friends, said her high point was holding two-day-old kittens and showed a picture.
It was endearing, Ms. Dally says, but as weeks passed, it became more apparent that Ms. Sturgess wasn’t at the same place socially as everyone else. She talked almost exclusively about cats. If someone tried to change the subject, she would continue, unaware of disapproving glances.
People avoided her.
“It bothered me and made me want to be her friend more,” says Ms. Dally, who had written a lengthy paper on autism the previous year.
Once Ms. Sturgess was diagnosed with autism, Ms. Dally knew being her friend would require extra effort. “I decided to be OK with that,” she says. “I knew this wasn’t a normal friendship.”
Maria would often spend the night on the love seat in Ms. Dally’s dorm room. One night, Maria was feeling anxious, but Ms. Dally was stressed over finals. “I don’t have time to talk with you,” Ms. Dally said. To buy time and calm her friend, Ms. Dally called up a slideshow of cats on Flickr.
Ms. Sturgess credits Ms. Dally with helping her accept that she was different, that it was OK—even good—to be different, and figure out what worked best for her. Ms. Sturgess struggled to talk, so Ms. Dally encouraged her to write. The two of them would sit in her dorm room, communicating by texts and emails. Even now, Ms. Sturgess labors to answer out loud the question “How are you?” but can write at length about what makes her happy. “I turned away from pretence and toward embracing my quirks and employing them in service to others,” she writes. “That’s where happy lives and where I’ve found my home.”
Today Ms. Sturgess has a Master’s degree in English and non fiction writing and lives with her cat, Lucy. She works part-time at a non profit autism center and writes columns for her blog,answering questions from parents about what is like to be autistic and demystifying seemingly inexplicable behaviors, like repeating “Hi” to the same person several times in an hour, or having self-injurious meltdowns.
Her mother has learned much from Maria’s writings. “It’s like she is almost a different person when she puts a pen to paper,” she says.