This mixed-methods study aimed to explore the experiences of screening, assessment, diagnosis, and intervention for autism spectrum disorder (ASD) among 249 parents of children with ASD in Hong Kong. Participants completed a survey and responded to open-ended questions regarding their experiences and views of ASD service provision. The quantitative analysis focused on (a) assessing parents' experiences of key milestones, including the time to access, professional support and consultation, referral and follow-up, and (b) examining the correlates of the milestone experiences. Qualitative themes focused on the contexts of parents' difficulties and views of ASD service provision. A joint display presented the integration of converging the quantitative and qualitative data. There were significant delays from screening and diagnosis to intervention due to limited resources for ASD. Although the government surveillance system facilitated access to screening, a delay in the entry to intervention remained. Parents' narratives of frustration and confusion with ASD services reflected a lack of a coherent system for diagnosis and family needs assessment. Quality service provision for ASD requires integrated efforts of early identification, referral, and psychoeducational family support. Unbalanced resources between screening and intervention in public pediatric care settings should be addressed to meet the unmet needs of children with ASD.
Public Policy Relevance StatementIt is essential to establish well-coordinated service provision for screening, diagnosis, and special education needs programs for children with autism spectrum disorder (ASD) to facilitate early intervention. Little is known about how parents experience ASD health care services regarding availability, accessibility, and adequacy in the context of limited resources for ASD. This mixed-methods study documented significant delays in the pathway to diagnosis and intervention, and the findings highlight the policy impact of incoherent systems on the well-being of families of children with ASD.
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