Adjustment to child autism diagnosis during parent-mediated intervention

Abstract

When a child is diagnosed with autism, their parent goes through a process of working through the associated thoughts and feelings known as adjustment to the diagnosis. Research has yet to investigate whether there are benefits for adjustment from parent-mediated intervention (PMI), an evidence-based approach in which the parent is trained to deliver intervention to the child.

Study 1 reports a systematic review of measures and intervention for adjustment to autism diagnosis. The review identified heterogeneity in how adjustment is defined and measured, and limited reporting of psychometric properties. The review identified six interventions for caregiver adjustment, three of which produced statistically significant improvement. Study 2 evaluates adjustment during a randomised controlled trial of a PMI. The PMI did not significantly improve adjustment, and pre-treatment adjustment did not predict dropout, engagement, or child outcomes. Study 3 uses qualitative methodology to explore experiences of adjustment for a subsample of parents who completed the PMI. Three themes were developed: feeling out of control, becoming agents of change, and accepting that what will be will be. Study 3 proposes the Active Balance model of adjustment, which builds on prior theory to explain how parents actively work on adjustment.

This research indicates a fundamental need to improve rigour in how adjustment is defined and measured. Based on Study 3, I propose a conceptual definition of adjustment to autism diagnosis as the process of balancing acceptance of the diagnosis with striving for change focused around autism. Clinical considerations for supporting adjustment are discussed. Parents may benefit from a range of supports; PMI may contribute to supporting adjustment but may not be sufficient. Further research is needed to understand how parents experiencing significant adjustment difficulties respond to PMI, and to improve our ability to target adjustment support.