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. Parents described continuous adaptation to their child's needs; everyday life required continuous follow-up while managing concerns of siblings and the child's safety. Experiences of participation and isolation coexisted, and parents frequently fostered understanding and acceptance of ASD while seeking practical and emotional support in everyday life. Preschool services and support were important. In their interactions with welfare services, parents often encounter bureaucratic complexity when seeking competence, stability, and flexibility. 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.