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Member Research and Reports

Member Research and Reports

Temple: Unlocking the Participation Puzzle for Children With Autism Spectrum Disorder

For parents and caregivers of children with autism spectrum disorders (ASD) getting their child to participate in regular activities — anything from playdates and birthday parties to a normal morning routine — can be challenging. That’s because children with ASD often respond differently to sensory stimuli than people without the disorder.

These activities, however, are important for any child’s development and well-being — and as a result, parents and caregivers often use strategies to help children with ASD participate in as many as possible.

A new study published in the American Journal of Occupational Therapy surveyed those methods and discovered commonalities among unrelated families. Already, the data has yielded new ways to collect and organize information about how children with ASD can participate in various activities.

“We created assessment tools to help support families in their natural environments and interventions,” said Dr. Beth Pfeiffer, an associate professor of rehabilitation sciences at Temple University College of Public Health and lead author of the study. Dr. Pfeiffer and other researchers — including associate professor of rehabilitation sciences Dr. Gretchen Snethen and associate professor of physical therapy Dr. Carole Tucker, both at Temple — examined how parents and caregivers approach participation.

After interviewing 34 families, the researchers identified a common decision-making process, and also six strategies, that parents and caregivers used to facilitate participation.

Parents and caregivers distinguish between essential or meaningful activities and nonessential or non-meaningful activities. Then, they avoid the nonessential ones to devote more effort toward activities they believe are important to their child’s well-being.

The study found that to make participation easier, parents support the child by establishing routines or preparing for activities ahead of time. They also adapt the environment by eliminating distressing stimuli, increasing comforting sensations, and giving the child as much choice and control as possible.

Dr. Pfeiffer and her colleagues used this data to create three online assessment tools. They measure how much effort parents and caregivers expend in supporting children to participate in daily activities and gauge how different sensory features impact children in school and at home.

Parents and teachers can take the surveys online. The data is available to professionals and families to create individualized methods and interventions to help children with ASD participate in valued or essential activities.

“This helps us understand how parents might make decisions for children,” said Dr. Pfeiffer. “The way they process this information leads them to decide what and what not to do.

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