Abstract

Receiving a diagnosis of autism spectrum disorder is often a pivotal moment for parents. The diagnostic feedback session can provide helpful information for moving forward with their child’s care but can also be filled with conflicting emotions. A few studies have looked at common parent experiences and have suggested actions for providers, but there is little information about how providers can predict parent reactions to the diagnosis and adjust their feedback accordingly. This study investigated factors related to parent reactions to the diagnostic disclosure session using a) interviews with providers that commonly diagnose autism; b) a focus group with parents of children with autism; and c) a mixed-methods survey of 189 parents with autistic children diagnosed in the US in the past 3 years. Overall, providers seem to give more information to families who are already knowledgeable about autism, helping them leave even more prepared. However, families who come to feedback very anxious about receiving a diagnosis are most critically in need of a breadth of information and are at risk of leaving the session feeling lost and unprepared if they do not receive adequate resources during feedback. Providers should be aware of parent anxiety about diagnosis and prior autism knowledge, as these factors predict parent post-session preparedness, positive emotions, difficult emotions, and confusion. Providers can help promote positive emotional reactions for parents and prevent confusion by increasing their positivity, warmth, and respect towards the family, and by being clear and confident in their communications.

Degree

PhD

College and Department

Family, Home, and Social Sciences; Psychology

Rights

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