Should We Tell? Parents’ Perspectives on Disclosing an Autism Diagnosis

Background: Deciding to disclose their child's diagnosis of autism spectrum disorder (ASD) to others is a major life decision for parents. Limited research has investigated the implications of disclosure or non-disclosure, leaving families without evidence to help guide or inform their decision-making processes. It also leaves professionals, to whom parents often turn for advice and support, with little evidence to inform their recommendations to families.

Objectives:  To better understand: (1) The decision-making processes by which parents of a child diagnosed with ASD chose to disclose their child’s diagnosis to others; for example, family, peers, educators, healthcare professionals, and community members. We explored decision-making related to if, to whom, when, how, and why parents choose to disclose, or not disclose. (2) Parents’ perspectives of the outcomes of disclosure or non-disclosure.

Methods: Using a constructivist grounded theory methodological approach (Charmaz, 2006), we interviewed parents of 3-16 year old children with ASD (N=10 to date). Purposive and theoretical sampling were used for diversity in child and family factors (e.g., age, symptom severity, ethnicity), and families who have chosen to disclose and not disclose. Recruitment, data collection and analysis will continue until saturation. Consistent with grounded theory methodology, data collection and analysis are being conducted concurrently to inform theoretical sampling, emerging codes, and the development of theoretical categories. Data, consisting of verbatim transcripts, field notes, and memos, are being analyzed using constant comparative analysis and initial, focused, and theoretical coding strategies (Charmaz, 2006).

Results: Based on preliminary data analysis, decisions to disclose were related to parent’s acceptance of the ASD diagnosis, their perceived knowledge about ASD, their perceptions of stigma and blame, and parent’s desire for informal and formal supports. Perceived disadvantages of disclosure included reluctance to have their child labeled, especially when young, concern about a lack of control over who the child’s diagnosis may be shared with once disclosed, and fear of stigmatization and blame by spouses, relatives, and society in general. Benefits of disclosure included increased safety of their child and others, parent social support, affirmation of concerns about their child, and access to funding and services. However, some parent’s felt that disclosure was a necessity, not a choice, to access funding and services.

Conclusions: These analyses will be used to generate a theoretical model representing the decision-making processes of disclosure, including parents’ perceived decision making points and outcomes. Findings may help increase sensitivity and understanding, and decreasing stigma and judgment for professionals and the public, related to parents’ decisions of whether or not to disclose their child’s diagnosis of ASD.

Charmaz, K. (2006). Constructing Grounded Theory. London: Sage.