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Independence in Young Adults with Autism

As adolescents with autism spectrum disorder (ASD) transition to adulthood, many questions arise about how prepared they are and want to be to take on adult responsibilities. One important aspect of this transition is the individual with autism’s level of independence, not only with how independent they are, but also how independent they want to be. A new study by University of Missouri researchers asked young adults with ASD about their independence levels and identified four important themes: driving, living independently, autonomy (or decision making), and support systems.

“While much research has been conducted asking parents and caregivers about their children’s independence levels, few studies have actually interviewed young adults with ASD themselves,” said Andrew Tait, lead author and undergraduate student at Mizzou. “We thought it was important to ask autism self-advocates for their own thoughts about their levels of independence and what kinds of independence they valued the most.”

The study conducted by Tait and Dr. Nancy Cheak-Zamora, an MU School of Health Professions associate professor and researcher at the Thompson Center, included interviews of 15 young adults with ASD. These young adults were identified through the MU Thompson Center for Autism and Neurodevelopmental Disorders’ research database.

In the interviews, the researchers asked the participants about the areas of their lives where they either had independence or wanted more independence. Through these interviews, the researchers identified four common themes that were important to most participants.

“After analyzing the interview responses, it was clear that the ability to drive, to live independently away from home, to make personal decisions regarding finances and health, and the ability to access support systems like caregivers and government resources were the most important things to these young adults,” Tait said. “While some of the participants already had independence in some or all of these areas, the majority indicated that these things were important to them, even if they had yet to gain this type of independence.”

According to the researchers, understanding what types and degrees of independence are important to young adults is important in order to provide the support and resources for them to live fulfilling lives.

“For those people on the spectrum who are transitioning into adulthood, it is important to understand what independence they have and what independence they want,” Cheak-Zamora said. “The goal is to help them reach a level of independence that makes them feel fulfilled while staying healthy physically, mentally and financially.”

For this study, Andrew Tait won the top student research award for his submission to the MU Health Sciences Day. Tait and Cheak-Zamora intend on submitting the study for peer review and publication in the coming months.