Abstract
An autism diagnosis for a child is a pivotal event for caregivers, influencing both their psychological well-being and their quality of life. While prior research has examined parental experiences, the interplay between individual, systemic, and policy-level factors remains underexplored. Through the lens of ecological systems theory, this qualitative study examines 13 caregivers' experiences in nine countries across five continents. Thematic coding was clustered within three ecological levels: micro, meso, and macro. At the micro level, caregivers universally grappled with guilt and strained family relationships. At the community level, high-resource economies offered more extensive support services than low-resource economies did, resulting in better caregiver–provider interactions, whereas delayed or misdiagnosis persisted across all contexts. At the macro level, certain countries implemented autism-specific policies, but gaps between policy and practice were widespread, particularly in low-resource settings and rural regions in high-income economies. The findings highlight how diagnostic delays, stigma, and uneven service provision affect parental and child well-being. Policies influence access to services and diagnosis, financial security, mental health, and education and employment opportunities. The findings underscore the importance of tailoring policies to regional socioeconomic contexts, the need for policy enforcement, context-specific professional training, and whole-family support.
• Parents' emotional responses upon receiving an autism diagnosis include guilt, fear, and relief.
• The stigma of autism often strains both immediate and extended family relationships.
• Low- to middle-income countries have limited training, funding, and infrastructure, resulting in unmet needs.
• Families in high-income countries report better access to education and community support.
• Rural parents across the study face challenges accessing diagnosis, healthcare, and services.