Date Published: May 31, 2022
It started with Meijer, a Midwestern chain of superstores. Courtney and Bill were in an online chat room discussing Pokémon. Courtney mentioned that she had to go to Meijer. Bill knew the chain and wondered if she lived in Michigan, too. Turns out she did.
They began talking, and “eventually he asked me out a month later,” Courtney says.
And in 2021, they became Mr. and Mrs. Davenport, united by their love, a shared interest in online gaming, and one more thing. The Davenports have autism.
They joined SPARK, the largest study of autism, to learn how that diagnosis might affect them and a child they might have one day, Courtney says. They provided saliva samples for SPARK researchers, who are looking for genes that contribute to autism in participants’ DNA.
“I was curious about the likelihood that we would have a child with autism,” says Courtney, who is 29.
Courtney knows the challenges that autistic children face, both personally and professionally. She studied behavior therapy in college to become a registered behavior technician. She worked for a time with children on the spectrum, hoping to smooth their educational paths. “I just didn’t want people to go through what I went through” in school, she explains.
What Courtney Went Through
Courtney was diagnosed with autism at age 5, in the 1990s. She earned good grades, but she struggled to understand class rules and act the way that teachers expected. Behavioral and social challenges are common in autism, but some teachers seemed unprepared for a child on the spectrum. “They didn’t know how to deal with me. I was often suspended. I almost got expelled a few times,” she recalls.
One teacher yelled at her and pounded on her desk. “She thought I was a brat,” she recalls. A behavior analyst came to help, and provided a behavior plan to help Courtney in class.
Her parents later enrolled her in private and church schools, where classes were smaller. But she still faced bullying from some students. According to research, youth with autism are at higher risk of being bullied.1 “I was just kind of the weird kid there,” she says.
Misdiagnosis and Acceptance
Bill, who is 32, also struggled in school. He was bullied when he was younger. He was misdiagnosed with attention deficit hyperactivity disorder and, because of coordination problems, mild cerebral palsy, he says. When he was 14, an alert school counselor recommended that he be evaluated for autism. After his autism diagnosis, the school assigned him to a special education class, but it was not challenging enough for him. He transferred to an alternative high school.
Many of his new classmates had had academic, disciplinary, or behavior problems. But Bill saw a different side of them. “They seemed to be just a lot more accepting,” he says. “They treated me like I was the smartest guy there because I was actually doing my studies, unlike a lot of them. And so they usually asked me to help them out,” he says.
His classmates selected him as the student who was “dressed for success,” and he graduated second in his class.
Graduation and the Transition to Adulthood
The transition to adulthood can pose challenges for many new high school graduates, as they adjust to college or work. People on the spectrum typically lose the services their high schools used to provide.
Bill did not like the unstructured nature of the college classes he took.
But Courtney thrived at her university. Her interest in Pokémon games, which had been “uncool” years earlier, was suddenly considered socially acceptable again, she says. She liked her classes and living in a dorm.
When she was almost ready to graduate from college, Courtney was diagnosed with bipolar disorder, a condition that often begins in early adulthood.
Autism and Bipolar Disorder
Bipolar disorder, which can cause serious episodes of mania and depression, affects less than 3 percent of the general population. But it is much more common in autistic people, affecting about 10 percent. Researchers do not yet know why autistic adults are more likely to have bipolar disorder, depression, or anxiety, than other people.
Courtney receives treatment, but says that some mental health providers seem unprepared for autistic clients. “Some of the therapists I’ve had in the past didn’t really know how to deal with the autism part of me,” she says.
Despite this challenge, Courtney graduated from college and worked for a time. Eventually, because of her health, she had to stop working.
Bill works as the cleaning captain at a fast food restaurant. They live in a small house in Michigan owned by helpful landlords: Courtney’s parents.
Looking to Research for Autism Answers
In fact, it was Courtney’s mother who first told her about SPARK. Courtney and Bill joined the project, and took part in many online studies through SPARK Research Match. That program matches participants with autism researchers who are studying topics ranging from health conditions to employment.
Some of these studies offer participants a gift card, or an entry in a raffle for a prize. Money is tight for the Davenports, as it is for many autistic adults in SPARK. Courtney estimates that she may only have about $50 a month in “fun money” to spend on things that are not necessities. So the couple appreciates the gift cards, which are usually about $20.
But they join studies for other reasons, too. “I just pretty much did whatever study they threw at me, regardless of if I would get money from it, because I just like helping,” Courtney says.
She would like to see more research on autistic adults, who have not been studied as much as children on the spectrum have. “Our generation of autistic people is going to get older, and I feel like there’s a crisis coming for most of us,” she says. What will happen if they do not have children or relatives who can help them as they age? “How is the state going to take care of these people?” she asks.
What health problems will autistic adults face? “Am I more likely to develop dementia, like people with Down syndrome? Am I more likely to develop other health problems as I age?” she asks.
By participating in SPARK, the Davenports are helping researchers who are trying to answer questions like those.
Interested in joining SPARK? Here’s what you should know.
Photo provided by the Davenports.
- SPARK webinar on Bullying and Autism with Connie Anderson, Ph.D.
- SPARK article about research on adults: Answering the Questions about Autism in Adulthood
- Zablotsky B. et al. Autism 18, 419-427 (2014) PubMed