The Effects of Social Support on Quality of Life Among Aging Parents of Adult Children with Autism Spectrum Disorder

Background/Purpose: Although the number of adults with autism spectrum disorder (ASD) is unknown, prevalence of individuals with ASD who are either approaching adulthood or living as adults is increasing. Many of these individuals will require some form of lifelong care and support, with parents assuming most caregiving responsibilities across the lifespan. Studying parents' quality of life (QOL) could provide mental health professionals with information regarding the needs of aging parental caregivers and adults with ASD, including the availability of formal and informal social support. Formal social support provides professional services for both the adult child and parents, while informal social support helps parents feel supported by family and friends. This study examines effects of formal and informal social support on the QOL of parents of adult children diagnosed with ASD.

Methods: A total of 320 parents of adult children with ASD completed four surveys (World Health Organization Quality of Life – BREF [WHOQOL-BREF], Caregiver Burden Inventory [CBI], ENRICHD Social Support Instrument, a researcher-developed demographic survey). Participants had to be at least 50 years of age, caring for at least one adult child over 18 years of age who had a formal diagnosis of ASD, able to read and comprehend English, and have access to a computer for the web-based survey. Multiple linear regression analysis and mediation analysis were used to address the research questions and test the associated hypotheses.

Results: The participants ranged in age from 50 to over 70, with the majority of the participants Caucasian and female. The parents had been recruited from national autism support groups and organizations and generally had higher levels of education and income levels. The results of the multiple linear regression analysis indicated that self-reported caregiver health and informal social support were statistically significant predictors of QOL for parents of adult children with ASD. The mediation analyses indicated that informal social support, but not formal social support, mediated the relationship between caregiver burden and QOL.

Implications: The findings underscored the need to support aging parental caregivers of adult children with ASD through enhancing their informal social support networks. The formal social support networks that are intended to help parents of children with ASD are not providing adequate help for adults with ASD or their parents. Aging parents need formal social supports, such as employment, housing support, transportation, respite care, and financial help, to assist with providing care for their adult children with ASD. Availability of services can depend on the family’s location, with difficulty in navigating services resulting in additional challenges to accessing formal social support Social workers and other health professionals should be supported in developing and building formal and informal social support networks for parents of individuals with ASD. The needs and concerns of older parental caregivers of adults with ASD differ from parents of young children.