Even In Adulthood, Autism Challenges Linger For Caregivers
Aging caregivers of adults with autism are struggling and new research finds that some factors make the burden especially great.
The severity of an individual’s autism and their ability to complete activities of daily living — everything from bathing to preparing meals — are directly tied to the level of caregiver burden experienced by parents, according to findings from a study published recently in the journal Focus on Autism and Other Developmental Disabilities.
Researchers surveyed 320 parents, all over age 50, of adult children with autism. They were asked about their family situation, their level of caregiver burden and to rate their child’s abilities in communication, behavior and socialization as well as in performing basic self-care and other day-to-day activities. Follow-up interviews were conducted with 51 of the caregivers.
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“Behavior was the strongest predictor of caregiver burden,” the study found. “Parents who perceived their adult child’s behavior as more disruptive tended to have higher caregiver burden.”
Behavior was followed by basic activities of daily living like bathing and dressing and what are known as instrumental activities of daily living like managing money or shopping for groceries as predictors of caregiver burden.
Parents reported issues with physical violence that limited their ability to work or socialize and also made it difficult for their adult children to obtain employment or additional schooling. Meanwhile, whether or not an adult with autism could do things like drive or shower independently significantly influenced caregiver burden, researchers said.
The study is believed to be the first to examine how the functioning abilities of adults on the spectrum affect caregiver burden, with most previous research looking at children. Those behind the study said their findings show the need for behavioral support programs for adults with autism. Such programs should also help families learn how to help their adult children become more independent with day-to-day activities, they said.
“Social workers and other health professionals should be cognizant of the unique needs of aging parents caring for adults with ASD,” wrote study authors Christina N. Marsack-Topolewski and Alexandros Maragakis from Eastern Michigan University.