Parental Disclosure of a Child's Diagnosis of Autism Spectrum Disorder in the Emergency Department

Background:  Children and youth with autism spectrum disorder (ASD) regularly access a variety of medical services, including those in the emergency department (ED).  Within the ED, parents are tasked with having to make decisions about if, how, and when to disclose their child’s ASD diagnosis to a health care provider (HCP).  This disclosure process deserves focus and attention to ensure that HCPs can both communicate and provide effective care to families.

Objectives:  This is a sub-study of a larger study focused on examining the experiences of children and youth with ASD, their parents, and their HCPs when accessing, receiving, and providing care in two pediatric ED settings.  The objective of this study was to examine the dynamics involved in parents’ decisions to disclose a child’s ASD diagnosis within the ED.  Specifically, we aimed to understand the factors that motivated parents to disclose, those that hindered these decisions, and the perspectives of HCPs as related to disclosure.

Methods:  Parents with a child with ASD were recruited for the larger study upon visiting the ED in two paediatric acute healthcare settings.  Parents (n=29), children (n=4), and their HCPs (n=22) were interviewed. Parents also completed measures of their child’s adaptive functioning and social communication impairments.  Participants reported on their experiences in the ED and interview data were analyzed using a grounded theory approach.  Reports on the disclosure process were analyzed.

Results:  Findings from our qualitative analysis yielded three themes related to parental disclosure of an ASD diagnosis in the ED: (1) the decision to disclose or not disclose, (2) the transmission of the ASD diagnosis throughout the ED system, and (3) suggestions for improving the disclosure process.  While all parents in the sample ultimately disclosed, some experienced a significant decision-making process prior to disclosing.  Parents who were hesitant to disclose did not want to do it publicly and/or in front of their children; they wanted to avoid negative labels.  These parents also described HCPs who lacked an understanding of ASD.  Parents identified the desire for expedited service, the need to prepare staff, and the avoidance of unwarranted labels as being reasons for their disclosures.  HCPs acknowledged the importance of knowing about a child’s ASD diagnosis in the ED, and that discomfort in disclosing in front of their children as well as a fear of stigma could be barriers to disclosure for parents.  Parents also reported inconsistent experiences with communication following a disclosure, with some needing to repeat disclosures to multiple HCPs. Finally, to improve the disclosure process, parents suggested using a child’s file to alert HCPs to an ASD diagnosis and also encouraging staff to ask questions.

Conclusions:  Results from this study reveal that disclosure within an ED setting is both layered and dynamic. Parents and HCPs agreed that disclosure of a child’s needs allows for effective preparation and accommodation for families.  However, it is clear that conveying this information is not always straightforward for parents. These results have important implications for how HCPs decide to approach the issue of disclosure with parents.