Until recently, it has been difficult to gauge what skills young adults with autism need before they can manage their own health care. As they grow out of childhood, not all of them need the same level of guidance to make the transition to adulthood.
MU associate professor of health sciences Nancy Cheak-Zamora was one of the first to take a deeper look at the success of young adults with autism in making that transition.
Since autism spectrum disorder was first diagnosed in 1911, the disorder has evolved to include a wide array of symptoms and issues that can be difficult to pinpoint, according to the Centers for Disease Control and Prevention.
Among the issues that developed was how little was done to address the transition from childhood to becoming an independent adult.
Cheak-Zamora decided to survey a number of young adults with autism to determine how much they had been taught to take care of themselves beyond adolescence.
“We found that less than 15% of young adults with autism were actually getting trained to become an adult and take care of their own health care needs,” Cheak-Zamora said.
“We started working after that to really understand what are the things that young adults need to be able to manage their health care needs, but also their life in general as they become adults.”
While an undergraduate student, Cheak-Zamora worked as a behavioral therapist for one of her professors who had a young son with autism. From there, she continued to work with other children and developed a motivation to dive deeper into what would really help them move forward with their lives.
“When working as an applied behavioral analysis therapist, I got a better understanding of the lives of people with autism and how wonderful these kids are, for one,” Cheak-Zamora said. “And also just how complicated the disorder is and the struggle that their families were going through.”
Her initial survey included a large sample population of young adults with autism, as well as their caretakers, to determine what skills they thought were important in managing their own health care.
“The young adults were instrumental in helping us develop which categories we wanted to ask questions about,” Cheak-Zamora said.
She also found that caregivers and the young adults weren’t always on the same page in deciding which skills needed development.
“There were some serious disconnects between what the youth were saying they really wanted from the caregivers,” she said. For example, in some instances, caregivers didn’t believe a young adult was interested in learning about certain skills, such as sexual relationships.
“The caregivers would think, ‘oh yeah, I’m going to need to help them learn how to do that some day,’” Cheak-Zamora said, “not realizing that 20 years old is already some day.”
The final set of categories in the survey included personal safety, health care finance, health care visits, medication management, knowledge of one’s own condition and sexual health.
The personal safety section, for example, covers dialing 911, staying safe when home alone and interacting with law enforcement. Knowing about one’s own condition is intended to make sure young adults can communicate that they have a disorder or that they need help.
Questions about health care finance include finding information about insurance coverage, copays and other financial skills. Scores in those areas are typically low, Cheak-Zamora said.
“It’s funny because none of the autistic youth do really well on that one,” she said. “But I argue that no one, typically developing or otherwise, does this well.”
In the health care visit and medication management areas, young adults are asked whether they have adequate skills in scheduling doctors’ appointments, proactively interacting with health care providers and managing their own medication.
“Not everybody takes medication,” Cheak-Zamora said, “but we would like people to know how to do that and how to be attentive to their medications if they need it.”
Results from the assessment were distributed to five clinics to test thoroughly among caregivers. The next step is to assess young adults using the survey results.
Cheak-Zamora recently received a grant to assess the young adult population and said, “we’re excited to extend it.”
She doesn’t believe the survey will change much during this population assessment and predicts it will have a successful run-through with a few tweaks.
“Maybe just the wording so that it’s very clear,” she said. “I think it’ll be a pretty easy transfer.”
To date, the survey has typically been read to the patient or caregiver who then discusses the results with a doctor. Ultimately, it is intended to be self-administered and then moved to a virtual platform.
“Ideally it would be something that the clinic would send you electronically before your health care visit,” Cheak-Zamora said. “Then they would be able to talk to you about it during your visit.”