0910 “I Would Change Anything That I Could Possibly Change Just to Get Some Sleep”: The Lived Experiences of Autism Caregivers

Abstract Introduction Sleep problems affect up to 80% of autistic youth, and many caregivers struggle to manage them despite trying numerous evidence-based approaches. Despite the critical role that caregivers play in the management of child sleep problems, the caregiver experience, including psychological strain they may face, remains largely overlooked in autism sleep research. Understanding the subjective experiences of caregivers may clarify barriers to intervention implementation and adherence, and facilitate the development of more tailored, feasible sleep management tools. This study uses a mixed-methods approach to understand patterns in caregivers’ lived experiences managing sleep problems in autistic children. Methods We conducted semi-structured interviews with caregivers of autistic youth, exploring their thoughts regarding their child’s sleep and broader autism research (N = 25). A Large Language Model was used to identify unsolicited recurring themes, and quantitative child, parent, and household characteristics were compared between caregivers who did and did not express these themes. Given the small sample size, we only report effect sizes (η²) to indicate the magnitude of the group differences. Results Across all themes, hypervigilance due to nighttime safety concerns and powerlessness were among the most salient. Caregivers expressing hypervigilance showed lower perceived control over their child’s sleep (η² = 0.27), higher problematic parent–child sleep interactions (η² = 0.18), and poorer sleep quality (η² = 0.21). Caregivers expressing powerlessness had children with greater sleep disturbance severity (η² = 0.37). Conclusion This study revealed that caregivers’ emotional experiences, such as hypervigilance and powerlessness cluster with clinically meaningful child and caregiver characteristics and may shape sleep management. Nighttime safety concerns may make bedtime a particularly contentious time and disrupt caregiver sleep due to active or anticipated emergencies. Meanwhile, the tie between powerlessness and greater child sleep disturbance severity may indicate that existing interventions are not effective for a subset of families and novel interventions are needed for high-severity cases. Future directions include investigating how dimensions of psychological strain affect intervention adherence, and how caregiver-centered strategies can be designed to better align with families’ needs and constraints. Support (if any) UL1TR002544