Diagnosed With Autism at 21—and OK With ItJune 18, 2015
It took 21 years for Lydia Wayman 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, Lydia 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. Wayman met Leigh Valencia, a fellow member of the color guard and a psychology major. Ms. Valencia noticed that Ms. Wayman 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. Wayman seemed unable to click with others, Ms. Valencia thought, and asked her if she had ever been evaluated for autism.
A few months later, Ms. Wayman 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. Wayman, 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. Wayman was born, the criteria were narrower, and doctors weren’t as familiar with the disorder.
Women, in particular, have been overlooked, says Scott Badesch, president of the Autism Society, a Bethesda-basedadvocacy group. A 2015 study from the Kennedy Krieger Institute in Baltimore, 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. Wayman’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 who lives in the Pittsburgh area. She and Ms. Wayman’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. Wayman 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. Wayman tried to fit in, copying the way a popular classmate wrote the letter M, and pretending to like chocolate because others did. High 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. Wayman graduated from high school a year early, hoping college would be a better fit. It wasn’t. Her senior year at Grove City College in western Pennsylvania, 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.
“Lydia 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. Valencia didn’t. “Leigh understood her in a way that no one else did, including me,” says Ms. Briski.
Ms. Valencia remembers meeting Ms. Wayman. Everyone in color guard was talking about summer high points. Ms. Wayman, 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. Valencia says, but as weeks passed, it became more apparent that Ms. Wayman 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. Valencia, who had written a lengthy paper on autism the previous semester.
Once Ms. Wayman was diagnosed with autism, Ms. Valencia 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.”
Lydia would often spend the night on the love seat in Ms. Valencia’s dorm room. One night, Lydia was feeling anxious, but Ms. Valencia was stressed over finals. “I don’t have time to talk with you,” Ms. Valencia said. To buy time and calm her friend, Ms. Valencia called up a slideshow of cats on Flickr.
Ms. Wayman credits Ms. Valencia 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. Wayman struggled to talk, so Ms. Valencia encouraged her to write. The two of them would sit in her dorm room, communicating by texts and emails. Even now, Ms. Wayman labors to answer out loud the question “How are you?” but can write at length about what makes her happy. “I turned away from pretense 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.”
After she was diagnosed, Ms. Wayman began receiving support services through a state autism program, such as help at the grocery store and post office, and she began seeing a therapist.
Today Ms. Wayman has a Master’s degree in English and nonfiction writing and lives in a studio apartment in Zelienople, Pa., about 40 miles from her mom, with her cat, Lucy. She works part-time at a nonprofit autism center and writes columns for her blog, Autistic Speaks, answering questions from parents about what it 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 Lydia’s writings. “It’s like she is almost a different person when she puts a pen to paper,” says Ms. Briski.
She understands her daughter needs strict routines. Ms. Wayman has diabetes and mitochondrial disease, which affects her ability to convert food into energy. Recently when her blood sugar dropped, her mother cradled Scooby-Doo fruit snacks in her open hands so Ms. Wayman could eat them according to her prescribed formula based on shapes and colors. Ms. Briski asked her to explain the routine so she would understand. Ms. Wayman was touched.
“She wasn’t hurried. She wasn’t asking for amusement, to laugh at my weirdness. She wasn’t suggesting I just eat them already so that we could keep going. She was meeting me where I was,” Ms. Wayman wrote. “She was asking about my world.…I don’t know if I’ve ever felt more loved.”