Experiences of Aging Parents of Adult Persons with Autism Spectrum Disorder

Background: Globally, 6.6 million people are diagnosed with Autism Spectrum Disorder (ASD). Of these, 80% are adults, many of whom are living with moderate to severe ASD and may remain in their parents’ care into adulthood. They often require ongoing substantial care with activities of daily living, which can put constraints on the finances, time, and lifestyle of their caregivers. Research shows that support networks diminish after autistic individuals leave school, with fewer adults receiving adequate services compared to children. As parents of autistic adults age, their health often declines, increasing their need for support networks to assist with caregiving. Although family members provide crucial informal support that reduces caregiver burden, parents often hesitate to reach out for fear of overburdening relatives, potentially leading to future care crises. This study aims to explore the challenges and coping strategies caregivers face with regard to caring for adults with ASD. This study will inform social work practice and interventions for this population.

Methods: This qualitative study explored the experiences of older adult parents (ages 54-72) caring for adult children (ages 25-36) with ASD. Semi-structured interviews were conducted with 14 participants (3 males, 11 females) from two southeastern states. Participants were asked about caregiving challenges, support systems, plans and concerns surrounding their future, and their coping methods. Thematic analysis was conducted following the six-step process outlined by Braun and Clarke.

Findings: Analysis revealed five key themes: 1) feeling disconnected from support systems; 2) experiencing service gaps after school transitions ("falling off a cliff"), including lack of emotional support and accessible information; 3) having anxiety about future care arrangements if they are no longer able to provide it, and after death; 4) prioritizing their child's needs over their own (“I’m not allowed to get sick”); 5) growing from experience and developing resiliency (e.g., having a set routine and proficiency in advocating and handling crisis).

Conclusion and Implications: Findings highlight the need for targeted support for older caregivers, improved transition services for adults with ASD, and accessible future planning resources. As caregiving parents get older, their growing personal needs may inhibit their ability to fulfill their child’s needs to the same extent they were used to. This challenge could bring reckoning about their own aging and possible losses associated with it, along with the prospect of their child being cared for by someone else. Some older parents undergo a process of 'shedding' their responsibility of caring for their child and establishing alternative care arrangements for when they are no longer able. However, for some, this process triggers anxiety and avoidance, especially when considering the possibility of their own dependency. This transition requires both financial and emotional resources and a need for guidance and support. This study suggests that social workers should take the initiative in creating interventions for aging caregivers who may postpone their decision-making and support them in acknowledging and legitimizing the difficulties of aging. Practitioners should also encourage and facilitate family communication about future plans, which can be a difficult topic for many.