Parents' and guardians' experiences in accessing autism spectrum disorder diagnostic services for children

Smith-Young, Joanne (2025) Parents' and guardians' experiences in accessing autism spectrum disorder diagnostic services for children. Doctoral (PhD) thesis, Memorial University of Newfoundland.

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Abstract

Background: Since 1990, there has been a global increase in the incidence of Autism Spectrum Disorder (ASD). As a result, there are additional demands for assessment, diagnostic, and treatment services, already identified as being inadequate in many jurisdictions. Early identification and diagnosis of ASD is a priority because the best chance of improving symptoms occurs through early and intensive interventions. A definitive diagnosis is often a prerequisite for children to access publicly funded healthcare services when available. Yet obtaining a diagnosis in itself can be stressful, frustrating, and time-consuming for many parents. It is important to understand parents’ experiences and the barriers they face in the process of accessing autism spectrum disorder diagnostic services for their children. Aim: To examine parents’ experiences in accessing autism spectrum disorder diagnostic services for their children and the barriers they face in that process. Methods: Qualitative research methodologies were used that included: grounded theory, descriptive exploratory methods, and the Joanna Briggs Institute methodology for systematic reviews of qualitative evidence. Analysis of interview data included constant comparative analysis, reflexive thematic analysis, and systematic data synthesis. A total of 32 parents and caregivers of children and youth diagnosed with ASD participated in in-depth, semi-structured interviews. The systematic review included 36 studies that varied in qualitative research designs with high methodological quality. Results: Parents’ experiences in accessing timely autism spectrum diagnostic services are impacted by factors that include: parents’ skills and capacity to advocate on their child’s behalf, severity of the disorder, time commitments involved in parenting a child with the disorder, perceived stigma related to their child’s diagnosis, delays in accessing diagnosis and supportive services, lack of information provided to them by healthcare practitioners, lack of availability of diagnostic services, encountering healthcare professionals with a lack of specialized knowledge, experienced confusion surrounding inaccurate or mixed diagnosis relating to co-morbidities, and socioeconomic and cultural disparities. Conclusions: There is a need to address wait times for services, and provide education and support services to parents and healthcare providers. These support services should focus on improving self-advocacy skills and reducing contextual and systemic barriers to accessing autism spectrum disorder diagnostic services including socioeconomic and cultural disparities. Study findings indicate further recommendations for policy, practice and research.

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