Date Revised: May 19, 2023
Mary Lipiec got a letter asking her to join an autism study called SPARK. But first, she had one question: Were they looking for a cure?
The answer was important to her. Although only 18 at the time, she had a keen sense of who she was, and what autism was.
Lipiec is autistic, and autism is “a natural variation in the human race,” she says. She wants to see autistic people respected, not cured or treated as though they need fixing.
SPARK responded that no, it is not about curing autism, she says.
“I thought more about it. I don’t really care that much about finding a cause for autism, but I was curious enough that I joined,” recalls Lipiec, who is now 24. In 2017, she also submitted a saliva sample for DNA testing by SPARK researchers, who are looking to discover more genes that are linked to autism.
Today, SPARK’s membership includes more than 20,000 autistic adults, and 103,000 children, plus their parents. SPARK also has the largest number of autistic girls and women in its study.
Autism, Disability, and Society
Lipiec is interested in how society’s definitions of disability affect people like herself. She is studying the ways people view disability, as part of a graduate school program in applied English at Cal Poly Humboldt University in Northern California.
Under the medical view of disability, she explains, a disability is an impairment that should be managed or cured by professionals. A functional view of disability focuses on a person’s limitations, she says. But another view, the social model of disability, sees autism as just a difference that should be accommodated by society.
Lipiec sees autism as a part of who she is as a neurodiverse person. Neurodiversity, a word coined by an autistic sociologist, is the idea that differences in the way people’s brains work are natural, not wrong or disordered.
Autism affects people differently. Some speak fluently, and others are non-speaking, for example. Some need significant support, while others need much less support.
Autism as Neither Strength Nor Deficit
“In my view, autism doesn’t have to be a strength or a deficit. It’s just a thing I have, a natural variation,” Lipiec explains. “I’m proud of my ability to follow a routine. I go for a walk every single day, even if it’s pouring. I’m proud of my ability to focus on something until it’s done,” she says.
Like many people on the spectrum, she can experience sensory overload: hearing many loud noises at once while she takes a bus to school or work, for example. “But I can also hear interesting things, too,” she says. “I can use it to my advantage.”
Problems arise when nondisabled people define disability based on their own “definition of able-ness,” she says. “Being neurodiverse would not be a problem if it weren’t for the overwhelming power of nondisabled people,” she says.
Finding Out About Autism
Lipiec, who has two brothers, says she is the only member of her family on the autism spectrum.
She was diagnosed at age 7. She remembers having therapy for speech delays, along with an Individualized Education Program (IEP) in school. But she didn’t know about her diagnosis until a chance event when she was 13. Feeling bored one day, she picked up a book about autism that was in her home. She began reading it, and she recognized herself in its pages. “It explained so much of what I experienced,” she recalls.
She strongly disagreed with her parents’ decision not to tell her sooner, although she believes they did what they thought was best. “I don’t think it ever occurred to them that it would help me to know. I actually felt so much better once I knew,” she says.
Lipiec did not know many people on the spectrum while growing up in a small, rural community near California’s border with Oregon. She met some autistic people in college. She completed her bachelor’s degree at Cal Poly Humboldt, which is within commuting distance of her family home.
“I don’t really seek out other people who have a diagnosis because I mostly don’t seek out other people period,” she says.
Like many on the spectrum, Lipiec says she experiences some anxiety in social situations. Nevertheless, she does well in a customer service job, which can be difficult even for people who don’t have anxiety or autism. She works as a student assistant in a university financial aid office, answering the questions of sometimes frazzled or anxious students. “The language surrounding financial aid is pretty confusing to people,” she says.
The Pleasant Surprises of Autism Research
Besides studying disability, Lipiec is also a frequent participant in autism research. She has participated in 29 studies through SPARK Research Match, which matches researchers with people who want to join their studies.
She was happy to learn that many Research Match studies focus on topics that matter to her, such as anxiety, depression, and sleep. “I did one study recently about autistic people and health care in rural areas. That’s pretty important to me. It shouldn’t have shocked me that these studies are out there, but it did shock me, pleasantly so.”
But she was not surprised when she got other news from SPARK. She learned a few years ago that SPARK had not found a genetic cause for her autism. SPARK has found genetic variations that contribute to autism in up to 10 percent of its participants. It reanalyzes participants’ genetic data when it uncovers new genes to add to its autism gene list.
The Future Ahead
Not surprisingly, Lipiec is considering becoming a researcher herself, among other possible careers. “I have been considering going into disability studies,” she says.
How do the needs of autistic girls and women differ from those of boys and men? Watch this important video featuring Lipiec and others.
Interested in joining SPARK? Here’s what you should know.
Photo by Dominique Stilletti of SPARK.