Protecting Myself and My Child: A Grounded Theory of Parents’ Journey through Diagnostic Feedback for Autism

Background: The diagnostic feedback meeting represents the first time that parents hear the news that their child has autism. Given the essentially unanimous agreement around the significance of this event, surprisingly little of substance has been said about it in the clinical and empirical literature.

Objectives: In this project, we developed a social-psychological conceptualization of parents’ journey through this pivotal period. This conceptualization addressed three interrelated questions: How are parents responding? Why are they responding this way? When do they respond differently?

Methods: Our work was guided by the methodology of grounded theory and the onto-epistemological lens of critical realism. We generated data from in-depth interviews with 27 parents of children (ages 1-10) who were recently diagnosed with autism at a clinic in Ontario, Canada.

Results: The central process, labelled protecting myself and my child, indicated that parents rapidly make meaning of, feel, think, and respond to the delivery of the diagnosis as signalling a hazard from which they must protect their family. Primary categories of action-interaction consisted of an undercurrent of anticipating in the lead-up to the feedback meeting, sounding the alarm when hearing the official pronouncement, followed by swelling distress and uncertainty. Depending on a complex interplay of conditions, parents dealt with their situation in three ways: protective maneuvering, instrumental responding, and/or processing-oriented advancing, which, in turn, affected their swell of distress and uncertainty.

Conclusions: These findings can help clinicians and service providers to think deeply about their role and how they can best use their expertise to facilitate parents’ journey through what is, primarily, an emotional process.