Caring for Adults with Autism: Impact on Families

Background: While an emerging body of literature addresses the financial and mental health impact of raising a child with Autism Spectrum Disorder (ASD) on the family (e.g., Karst & Van Hecke, 2012), very little is known about the impact of caring for adults with ASD on families. 

Objectives: Caregiver survey data were used to examine the family impact of caring for an adult with ASD across multiple domains, including: (1) utilization of caregiver support services, (2) time spent providing care, and (3) financial burden.  

Methods: A survey was completed by 189 parents or guardians of adults with ASD in middle adulthood (21-64 years of age, M = 35.5 years). Adults were diagnosed during childhood between 1970-1999 at the UNC TEACCH Autism Program. The survey included 17 questions regarding various aspects of family impact.  

Results: Caregivers were asked about their use of personal mental health services related to caring for an adult with ASD. Overall, 51% of caregivers reported using counseling services since their adult with ASD left high school. However, only 24% reported seeking counseling in the past two years. Similarly, 48% of caregivers reported ever participating in support groups but only 14% reported using a support group in the past two years.

Overall, 47% of adults with ASD were living at home with family members. Families who continued to care for adults with ASD at home reported greater difficulties than families whose adult with ASD was living outside of the home. Specifically, families whose adult with ASD lived with them reported that they spent significantly more time in caregiving activities (73% reported spending time in caregiving; 34% providing 24 hour per day supervision). In comparison, 31% of caregivers of adults living outside the home reported involvement in caregiving activities with 3% providing 24 hour supervision.

Families reported being involved in a variety of decision making activities for their adult with ASD including healthcare, finances, living situation, legal, treatment, work/day planning, and recreation decisions. 55% of caregivers with adults residing at home reported that they were involved in decision making in all 7 areas compared to 36% of caregivers with adults living outside the home.

Surprisingly, only 14% of caregivers reported increased financial burden since their adult child left high school.  

Conclusions: Caregivers of adults with ASD reported significant involvement in decision making across all areas of adult life for their son or daughter. Caregivers of adults who live with family spend an especially large proportion of their time supervising and making decisions for the adult with ASD. Although many caregivers have, at some point, sought out services to support themselves in handling these challenges, there appears to be a decline in professional caregiver support as the adult with ASD ages. Caregivers report a high level of personal burden in supporting their adult children with little professional support. While this pattern may minimize financial costs associated with caring for an adult with autism, long term personal costs both for the caregiver and the adult with ASD need to be examined.