Parent Perspectives and Perceptions of Autism Spectrum Disorder Diagnosis: A Scoping Review and Framework Development

Background: The growing number of children diagnosed with autism spectrum disorder (ASD) has greatly increased the demand for diagnostic assessments, leading to lengthy wait times. This is relevant as diagnosis is often needed to access behaviorally-based intervention which has been shown to significantly improve outcomes. Across the globe, there is no standard path or process for ASD diagnosis leading to a growing interest in examining the practices and quality of diagnostic assessments. Families of children with ASD are key stakeholders in the diagnostic process and their perspectives deserve to be explored and addressed.

Objectives: 1) To identify the quantity, methodological characteristics, key themes, and gaps in the current literature examining parents’ and caregivers’ perspectives of ASD diagnosis; 2) To create a framework for understanding parent and caregiver experiences of ASD diagnosis based on existing literature.

Methods: A scoping review was completed following Arksey and O’Malley’s (2005) framework. Five databases were systematically searched (CINAHL, Embase, Medline, PsycInfo, Scopus) for the period Jan 1994–Sep 2017. Titles and abstracts were screened for relevance. 121 articles underwent full text review.

Results: Seventy-one articles met inclusion criteria. Articles consisted of quantitative questionnaire-based studies, qualitative interviews/focus groups, mixed-method designs, and reviews. The number of annual publications increased over time. Results indicate that diagnosis is a uniquely stressful and emotionally intense time for parents and caregivers. The path to diagnosis was often seen as convoluted and fraught with delays. Factors found to impact the diagnostic experience for families included clinicians’ approaches to delivery of and the information and resources provided at the time of diagnosis. Based on these findings a framework was created indicating four central components of the family’s diagnostic experience: 1) the journey to assessment, 2) the assessment process, 3) delivery of the diagnosis and feedback session, and 4) provision of information, resources and support. With the exception of the negative impact of wait times, perceptions of the diagnostic process itself, such as background of the assessor, methods of assessment, and setting of diagnosis, have not been thoroughly examined in the literature to date.

Conclusions: The literature demonstrates a growing interest in parent and caregiver perspectives of ASD diagnosis. The path to diagnostic assessment was long and complex for many families and should be targeted as an area for improvement. Clinicians should strive for an honest but hopeful tone with the strengths-based approach to diagnosis that families desire. The feedback session after diagnostic assessment should emphasize information and resource support as this has been identified as the most important element of the diagnostic process for families.