Decision-Making Processes That Inform Parents’ Disclosure of Their Child’s Autism Diagnosis to Others

Background: When children are diagnosed with ASD, parents are faced with numerous decisions, including to whom they should disclose this information. There are limited resources to inform their decisions and no literature that looks at processes of disclosure.

Objectives: To investigate the decision-making processes by which parents of a child diagnosed with ASD choose to disclose their child’s diagnosis to others; for example, educators, family and friends, healthcare professionals, other parents, and others in the community.

Methods: In this constructivist grounded theory study, we conducted semi-structured interviews with 25 parents (19 mothers, 6 fathers) of 23 children diagnosed with ASD (19 males, 4 females, age range 3 to 13 years). Participants were purposefully sampled across diversity in child age, presentation across the ASD spectrum, time since diagnosis, and decisions to disclose or not disclose. Interviews were transcribed verbatim and managed through NVivo 11 Pro. Established grounded theory constant comparison methods were used to yield processes depicting parents’ decision-making related to disclosure of their child’s ASD diagnosis to others. Following convention in qualitative research, rigor was demonstrated through established methods of trustworthiness and authenticity, including critical reflexive dialogue with colleagues about the data, prolonged engagement by team members immersed in ASD, negative case analysis, and member-checking through clarification probes during interviews.

Results: Five sequenced processes informed disclosure: (1) Finding the Fit (2) Assessing the Benefits, (3) Following Values and Beliefs, (4) Managing Peoples’ Responses, and (5) Adjusting Along the Way. Parents initially needed to determine whether the diagnosis of ASD was a fit for their child, which involved learning about or changing their perceptions about the disorder, as they typically did not know a lot about ASD. The primary reason for disclosure to anyone was whether it would benefit the child for others to know the diagnosis. All parents disclosed to the school with the expectation that the child would receive services and understanding. A secondary consideration was whether disclosure supported the parent. Next this information was filtered through the parents’ values and beliefs related to privacy, disability, and family culture. These were rarely black and white decisions, and often parents disclosed to some people and not to others. Parents needed to then manage the varying responses and advice from others. Then, as the parent and child journey continued, decisions to disclose or not disclose sometimes changed based on responses from others.

Conclusions: The process of disclosing their child’s diagnosis of ASD to others is complex. Findings from this study can contribute to discourses related to disclosure or non-disclosure, and help increase sensitivity and understanding for healthcare professionals, educators, and the general public related to parents’ decisions of whether or not to disclose their child’s diagnosis of ASD.