In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.
Duncan, A. L., & Shepley, C. (2026). Stronger Yet Stretched: Resilience and Stress in U.S. Families Raising Autistic Children. Autism, 0(0). https://doi.org/10.1177/13623613261480171
Lay abstract:
Raising a child with autism presents families with unique challenges and strengths, often characterized by heightened stress but also remarkable resilience. This study looked at data from the 2022 and 2023 National Survey of Children’s Health administered by the U.S. Census Bureau to examine the resilience and stress of U.S. families with and without a child diagnosed with autism. Statistical models revealed that although families of autistic children experience significantly higher stress, they also report higher levels of resilience compared with families of nonautistic children. Specifically, families raising a child with autism reported higher ratings of family communication, problem-solving, inner strength, and hope. These findings offer evidence of the adaptability and emotional growth present in households raising a child with autism.
From the article:
Given the disproportionate levels of stress reported by families raising a child with autism, alongside the widespread recognition of stress as a major contributing factor to detrimental mental and physical health conditions, it is logical to assume that families may seek treatments to mitigate their stress or service providers may proactively recommend treatments targeting stress. Studies on parent-directed treatments for decreasing stress have surged in recent years (Mo et al., 2024), with small-scale efficacy trials suggesting that mindfulness-based interventions and acceptance and commitment therapy may demonstrate potential viability as effective treatments (Li et al., 2024). Regarding treatments that should be avoided for decreasing stress, the use of applied behavior analysis for improving child skills will likely not have spillover effects that impact caregiver stress (Duncan et al., 2024; Duncan & Shepley, 2022). Similarly, studies that aim to improve caregiver abilities by training them to implement interventions based on applied behavior analysis will likely not result in improvements to caregiver stress (Mo et al., 2024). There is ongoing research looking to modify well-established treatments for reducing caregiver stress (Parent-Child Interaction Therapy [University of California, Los Angeles, 2024]) for families raising a child with autism; however, results from these studies will likely not be available for some years.
