Relationship between symptom severity and caregiver burden experienced by parents of adults with autism
Focus on Autism and Other Developmental Disabilities
This study examined the relationship between the severity of autism spectrum disorder (ASD) and caregiver burden among parents of adult children with ASD. Using a mixed-methods study, 320 parents of adults with ASD participated in the web-based survey, with 51 parents participating in follow-up interviews. The quantitative analysis was used to determine whether caregiver burden could be predicted from the severity of ASD factors (communication, behavior, and socialization) and basic and instrumental activities of daily living (BADLs and IADLs). Results indicated that caregiver burden was predicted from BADLs, IADLs, and adult child behavior. Interview themes that emerged from qualitative analyses supported quantitative findings. Behavior was the strongest predictor of caregiver burden and discussed by parents during interviews. Professionals should develop behavioral support programs for adults with ASD to continue to reinforce positive behavior and support parents who are managing their adult child’s difficult behaviors.
Link to Published Version
Marsack-Topolewski, C. N., & Maragakis, A. (2021). Relationship between symptom severity and caregiver burden experienced by parents of adults with autism. Focus on Autism and Other Developmental Disabilities, 36(1), 57–65. https://doi.org/10.1177/1088357620956927