About 10 years ago, Kara Hume decided that chasing around her 2- and 5-year-old wasn’t enough exercise. So, she joined a gym and started working out again. One day, she got distracted by a class taking place in the fitness studio, which could be seen from a large window connected to the weight room.
“They just looked so fit,” Hume says. “And the women looked so strong. They were lifting barbells and doing so many different movements.”
That’s when Hume began doing CrossFit, a popular fitness program that combines Olympic lifting with high-intensity movements.
“I had never used a barbell before,” she shares. “It felt so empowering to be able to learn these movements.”
![What is autism spectrum disorder? According to the National Institute of Mental Health, “autism spectrum disorder is a neurological and developmental [condition] that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as a ‘developmental [disability’] because symptoms generally appear in the first 2 years of life.”](https://endeavors.unc.edu/wp-content/uploads/sidebar-asd.jpg)
Hume has been participating in CrossFit ever since. In addition to being a fitness fanatic, she is an autism researcher within the UNC School of Education. She and her colleagues have conducted two of the largest school-based studies on autistic students and have sorted through thousands of articles on the topic to help teachers and families identify successful interventions. During the pandemic, they developed COVID-related resources for families that have been downloaded more than 300,000 times.
Over the years, Hume has merged these passions for fitness and supporting neurodivergent communities. She’s gone whitewater rafting with children with disabilities, rock-climbed with students at an alternative school, and since 2018 has helped coach an adaptive CrossFit class for people with intellectual and developmental disabilities.
Now, the class, called Power Hour, is part of a National Institutes of Health (NIH) project focused on promoting healthy aging and the physical and mental health of adults with intellectual disabilities.
“We hear from people all the time that Power Hour is making a difference for them, but we’ve never been able to prove it through research,” Hume says. “And now we’ll be able to study it in a much more systematic way, looking at health metrics and quality of life.”
While Hume’s dedication to fitness and research has shaped much of her adult life, her commitment to working with individuals with disabilities traces back to a formative experience from her childhood.
Empathy in education
When Hume was 10 years old, her best friend’s mom invited her to visit the special education pre-school where she taught. Hume loved working and connecting with the kids and quickly realized that was what she wanted to do when she grew up.
“It felt vibrant. It felt affirming. It felt welcoming. It felt alive,” she says. “And that’s still what I look for in the spaces where I work.”
Then, for a high school community service project, she volunteered with a local family who had a 7-year-old autistic son named Kyle. He didn’t communicate verbally, so Hume would follow his lead and join him in what he was doing: flapping paper, humming, laughing.
“I felt like I was connected with him on a totally different level,” she shares. “I enjoyed being with him.”
In 1995, after graduating from the University of Evansville in Indiana, Hume returned to Phoenix to take a job as a special education teacher at a local elementary school. She worked with autistic children, helping them connect more within their mainstream classrooms.
Eventually, the district sent her to UNC-Chapel Hill to participate in TEACCH training, a five-day program providing teachers with best practices for working with autistic students. It was founded in 1972 by Eric Schopler, a Carolina psychologist who was one of the first people to determine that autism is a treatable neurological condition.
She enrolled in the special education PhD program at Indiana University at Bloomington to work with Sam Odom, who studied early childhood interventions for students with developmental disabilities. Today, Odom is a senior research scientist at the UNC Frank Porter Graham Child Development Institute and research professor emeritus within the UNC School of Education.
“If you’re interested in autism, there’s no better place to work than UNC,” Hume says.
So, it’s no surprise that, in 2008, she made her way back to Carolina.
Broad approaches, individual impacts
Hume’s seven years as an elementary school teacher play a big role in the work she does today as an education researcher.
“I am not going to do research that doesn’t make a meaningful difference in the classroom,” she says. “If I don’t think that the intervention is feasible or if I think the demand is too high on teachers, I won’t do it. That’s why I try to make materials accessible and teacher friendly.”
Oftentimes, one of the biggest hurdles for teachers is that there’s an overwhelming amount of information about working with students with autism. That’s why one of Hume’s big projects was conducting a systematic review on best practices for autistic children. This involved reviewing tens of thousands of academic articles to determine the most successful evidence-based practices.
Hume and her team have also conducted two large studies on this population, both of which have been recognized as top scientific advances in autism by the U.S. Department of Health and Human Services’ Interagency Autism Coordinating Committee.
“What we have found so far is that to improve outcomes for students we need to build high-quality programs across a school setting — including the classroom, the cafeteria, the media center, and other spaces,” Hume says. “Even though our studies are these large randomized controlled trials, we can see the impact at a very individualized level.”
One example of this individualization is Hume’s toolkit on how to support individuals with autism during uncertain times like the pandemic. In it, she and her team suggest seven support strategies that can be modified for each person’s age and needs.
Inclusive exercise spaces
Hume has worked with all age levels during her research career, from preschool students to adolescents. Now, she’s excited to work with autistic adults.
“Post-secondary life is really where my interest is headed, and I’m really passionate about following this population beyond high school graduation,” Hume shares. “Once you lose your individualized education plan after leaving high school, there just aren’t a lot of guaranteed services for autistic people.”
For her new NIH project, she’s collaborating with Carolina developmental scientist Brianne Tomaszewski and University of Arkansas’ Melissa Savage to study the physical and mental health outcomes of Power Hour and how individualized coaching impacts physical activity.
Over the last year, they’ve worked with focus groups comprised of caregivers, direct service professionals, and fitness experts to determine what helps and what gets in the way of developing an exercise program for this population. They also conducted surveys and interviews with adults with intellectual disabilities — the people who would use these services — to find out if and how they exercise and what they’d like to get out of a program like this.
“And what we found is that the social aspect is the most motivating part,” Hume says.
Most recently, they completed a pilot study with 15 adults with disabilities and their caregivers. They tracked their activity using an Actigraph, similar to an Apple watch, and assessed their body composition using a egg-shaped device called a Bod Pod.
Since many people within this population are sensitive to their environment, Hume and her collaborators asked participants about their comfort using these devices. For the Bod Pod in particular, which users must climb inside of, they created a narrative story to explain how it works and why it’s important for the study.
“We took time to work through the potential measures and get feedback at every step,” Hume stresses.
The next step? A 120-person clinical trial. While Hume would love to see an increase in physical activity within this population, she also strives to improve overall quality of life and social connectedness.
As she continues to work with adults in the autism community, she’d like to engage them more in outdoor spaces and activities like hiking, camping, and rock climbing — hobbies Hume loves.
“There’s this phrase in the disability community: ‘an enviable life.’ What is it that makes someone look at your life and say, Oh, I like that. I think I would want to do that. I want to have that in my life. How can we make sure that those enviable qualities are centered in the lives of autistic people?”