"Had a Good Cry, then Went Online": Factors Associated with Parent Reactions to Diagnostic Disclosure Sessions

Background:

Receiving a diagnosis of an autism spectrum disorder (ASD) is often an important event in the life of a family. The diagnostic disclosure session can produce strong emotions and stress, but also can help families learn about autism and access helpful resources. To date, most of the research literature focuses on the broader diagnostic process or on qualitative data from a small number of families. Little is known about how providers can improve their diagnostic disclosure sessions to better serve families.

Objectives:

This study aims to better understand positive and negative parent experiences with diagnostic disclosure sessions, with the goal of understanding how providers can improve client outcomes by maximizing the benefit of these sessions.

Methods:

Information was gathered through a mixed-methods study including interviews with diagnosing professionals of various disciplines (n=6), a focus group of parents (n=11), and surveys from U.S. parents with children diagnosed with ASD in the past 3 years (n=160). The survey was developed for this study using currently available research and asked parents about their attitudes and knowledge coming into the disclosure session, their experiences during the disclosure session (e.g., provider characteristics, information received), and their experiences following the session (e.g., knowledge and confidence, emotional responses, actions taken). The survey also included open response questions about their experiences receiving the diagnosis and how the session could be improved.

Results:

Parent satisfaction with the diagnostic disclosure session was best predicted by having a provider who parents felt was warm and empathetic, really “got” their child, and was competent. They also felt more satisfied if providers adequately explained why their child had ASD, described treatment options, and gave strategies they could use at home. In qualitative responses, parents emphasized that recommendations for at-home strategies were extremely helpful, and that they would like more step-by-step recommendations that were rank-ordered in terms of priority. Parents who entered the session feeling more nervous about receiving an autism diagnosis were more likely to leave the session feeling shocked, worried, upset, and sad about the loss of the future they imagined for their child. Parents felt most hopeful after the session if they had a provider who addressed their child’s prognosis, explained the diagnosis, and was warm and empathetic. Immediately following the session, parents report crying, and then accessing services right away, with most parents seeking informal social support and provider-recommended treatments first.

Conclusions:

Providers who diagnose ASD can help support parents by making sure that parent expectations are adequately addressed during the disclosure session. Attending to parents’ emotional states at the time of the session may improve outcomes afterward. Parents especially value step-by-step information on how the diagnosis was decided and instructions on how to access specific resources. Empathic and warm diagnosticians are valued and trusted most.