Receipt of Social Support among Compound and Noncompound Caregivers of Adults with Autism

ABSTRACT For parents of adult children with autism spectrum disorder (ASD), caregiving can be ongoing, beginning at diagnosis and continuing throughout adulthood. As parental caregivers age, many may be faced with additional caregiving responsibilities, such as caring for another loved one. This study examined differences in formal and informal social support used by caregivers providing care to more than one person with at least one being an adult child with ASD (compound caregivers) and those caring for a single adult child with ASD (noncompound caregivers). A nationwide sample of 320 parents (age 50 or older) of adult children with ASD completed a web-based survey to understand use of formal and informal social support. Fisher’s exact probability tests were used to determine significant differences in the extent to which the services were used by the two groups of caregivers. Results indicated that 4 of the 12 formal and 2 of the 6 informal social support services differed significantly between compound and noncompound caregivers. Given that both groups of caregivers were aging, future research should focus on understanding what services are anticipated to be needed as these changes occur and as changes to future care plans are needed, to best support their care-recipients.