Parents’ Experiences Navigating the Diagnostic Process for Children with Autism Spectrum Disorder

The diagnostic process for autism spectrum disorder (ASD) can pose many barriers for families, especially within rural communities where there is a lack of adequate diagnostic and therapy services available. Factors such as cultural stigma, medical professionals, financial constraints, and travel have previously been reported as barriers for pursuing a diagnosis within rural geographic regions. The current study was conducted to identify obstacles that parents face within rural southern Illinois while on the path to receive an accurate diagnosis of ASD for their child. This study also aimed to determine what resources were being provided to parents at the time of diagnosis and what supports assisted families throughout the diagnostic process. Participants included eleven families of children with ASD residing in southern Illinois who had been diagnosed between 2013 and 2019, with one outlier diagnosed during the early 2000s. A qualitative research design was used with a semi-structured interview of eight open-ended questions regarding experiences with the diagnostic process. The interviews were analyzed using Qualitative Data Analysis Miner Lite to find common themes across parent responses. The current study’s results were consistent with existing research, with experiences and perspectives varying significantly across families. The findings from this study will be used to improve the diagnostic process within southern Illinois by better informing service, teaching, and research at Southern Illinois University Carbondale’s Center for Autism Spectrum Disorders (CASD)