Barriers and Innovations Towards Accessing an Autism Diagnosis in Rural Northern Ontario: A Qualitative Study

Abstract

Background

Early identification and diagnosis of autism are essential steps in supporting children and families. In rural communities, families can experience significant challenges in accessing an autism diagnosis.

Methods

We conducted semistructured interviews with four groups of participants: managers (n = 11), diagnosticians (n = 7), clinicians (n = 14) and parents/caregivers (n = 20) across six regions in Northern Ontario to learn of barriers and facilitators in accessing an autism diagnosis. Two independent coders coded each transcript and used inductive thematic analysis to identify themes across participants and regions.

Results

Five themes were generated from participants: (1) Gaps in autism knowledge delay early identification for children requiring an autism assessment; (2) complex systems create navigation barriers for families in knowing where to seek help; (3) families with limited access to resources face delays in the early identification process; (4) staffing challenges exacerbate barriers within the autism diagnostic process; and (5) collaboration among health disciplines while using a culturally responsive approach to care facilitates the autism assessment process.

Discussion

Hopes about the future of accessing an autism diagnosis were shared by families and professionals; although some challenges are fixed (e.g., vast geography), others are amenable to interventions such as building community knowledge and streamlining service navigation.