Parents’ journeys to their children’s delayed Autism Spectrum Disorder diagnoses
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Date
2023-08-24
Authors
Cook, Amber
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Abstract
Autism Spectrum Disorder (ASD) is an increasingly prevalent neurodevelopmental disorder that often requires evidence-based early behavioural intervention to improve developmental outcomes and quality of life. Unfortunately, many children with ASD are diagnosed later than is ideal and opportunities for early intervention are no longer available to them. Parents’ experiences as their children journey through the ASD assessment process are enormously emotional, but few Canadian studies have examined the emotional impact of diagnostic delays specifically. The current dissertation used mixed methods to document parents’ extended journeys to their children’s ASD diagnoses in Canada. Analyses of data collected via a quantitative survey revealed that the time to ASD diagnosis was relatively long (M = 5.2 years; SD = 2.3) despite parents reporting concerns about development early in their children’s lives (Mdn = 3.0 years, Range = 0.5-7.0). Extended diagnostic journeys were often due to lengthy waitlists, multiple appointments, and inaccurate diagnoses. Qualitative interviews with mothers (n = 11) shed light on the emotional rollercoaster that they experienced during the diagnostic process. Feeling of high levels of frustration, confusion, and helplessness were related to efforts to understand their children’s behaviours and this had a powerful negative impact on other areas of their lives (e.g., strained spousal relationships and family finances). A mixed methods integration of the quantitative and qualitative data revealed that stress and dissatisfaction with the diagnostic process were elevated and linked to barriers such as reduced accessibility to the public healthcare system and communication issues with clinicians. These findings have several important implications. Directing parents to support groups and couples counselling, and further clinician training in screening mild and complex differential ASD cases and appropriate communication with parents are paramount to attenuating the emotional rollercoaster experience. In addition, within the healthcare and education systems, policy makers must review eligibility criteria for funding and support services so that children with developmental issues can access early intervention programs even before definitive diagnoses are made.
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Keywords
autism spectrum disorder, delayed diagnosis, emotional impact, stress, support