Betwixt and Between: Exploration of Liminal Experiences for Families of Children with Autism Throughout the Diagnostic and Initiation of Intervention Processes
Individuals with autism spectrum disorder (ASD) in rural communities are diagnosed later than individuals in suburban areas (Daniels & Mandell, 2014). Additionally, families in rural areas face significant barriers in accessing diagnostic clinics, intervention, and support services due to geography, less service providers per capita, lower socioeconomic status and levels of education on average (Antezana et al., 2017). Diagnostic prevalence of ASD in children is 1 in 54 and average age at diagnosis is above four years, but eight of the eleven monitoring sites are based in metropolitan areas (Maenner et al., 2020). Children with ASD in rural areas are underrepresented in parametric data and are missing opportunities for early intervention due to delayed diagnosis. There is a dearth of evidence on families in rural areas and how delayed diagnosis, causing delayed intervention, is impacting both the individual as well as the family. We will explore the lived experience for families of children with ASD who live in rural areas through the referral, diagnostic, and initiation of intervention processes. We will conduct a secondary data analysis on a database from a regional diagnostic center and will use findings from this analysis to inform an interview-based qualitative arm with 10 families of children with ASD from rural communities. The focus will be on liminal phases created by this system of care, or the phases of time between referral and diagnosis and between diagnosis and initiation of intervention. Focusing on liminal phases will inform novel intervention studies addressing family needs either pre-diagnosis or post-diagnosis. This study will produce a rich narrative of how care systems are interacting with families from rural communities. Clinicians must rely on perceptions and anecdotal evidence when providing care for families from rural communities. This study will provide an effective framework for understanding the barriers families experience in the diagnostic process that will aid in designing novel interventions to address these barriers.