Early autism diagnosis strains parents despite strong welfare systems
A new Scandinavian study finds that parents of young children with autism face significant stress and burden even in countries with extensive public support. The research highlights gaps in existing welfare services, suggesting opportunities for policymakers and service providers to redesign early intervention programs that better address family needs.
Originaltitel: The burden of care, parenting stress, and navigating welfare services: parents' everyday experiences of young children with autism spectrum disorder.
BACKGROUND: Parenting a child with autism spectrum disorder (ASD) is demanding and affects all aspects of life, yet parents' experiences during the child's early years remain underexplored, especially from Scandinavian countries. This study examined parents' experiences in a Scandinavian context characterized by strong parental involvement of both parents, extensive preschool coverage, and comprehensive welfare systems. Our aim was to explore how parents of preschool children experience everyday parenting and how these experiences shape parenting stress and family life. MATERIALS AND METHODS: Thirteen individual semi-structured interviews were conducted with mothers and fathers of children with ASD aged three to five. This study is part of the "Enabling Parents of Children with Autism Spectrum Disorders - A Randomized Controlled Study on Parenting Programs", registered at Clinical-Trials.gov (ID: NCT05750095). Data were analyzed using Systematic Text Condensation, a descriptive and exploratory cross-case thematic approach. RESULTS: Three main categories were identified: " CONCLUSION: Parenting a young child with ASD is a dynamic process involving ongoing tasks, adaptation, and learning, strongly shaped by both the child's needs and the coherence of the surrounding support systems. When services are fragmented, insufficient, or uncoordinated, the parental burden and stress increases, whereas moments of mastery and support foster resilience, underscoring the need for competent, flexible, and family-adapted services.