Understanding and Sharing an Autism Spectrum Disorder Diagnosis: Perspectives of Diverse Families Participating in a Family Navigation Program

Background:  Caregivers express a range of responses and experiences following the diagnosis of autism spectrum disorder (ASD) in their child, including relief, stress, and perceived or enacted stigma. Few studies, however, have examined how families from immigrant, racial ethnic minority, or low-income backgrounds understand and disclose their child’s diagnosis.

Objectives: The objectives of this analysis were to describe caregivers’ understanding of their child’s ASD diagnosis and what they told others about their child’s difficulties. We explored patterns of understanding and disclosure in families participating in a Family Navigation program and a comparison usual care group, and across immigrant and U.S. born families.

Methods: This qualitative analysis included 155 families enrolled in a longitudinal, randomized controlled study of the impact of Family Navigation (R40 MC 19928-01, Augustyn, PI ) on clinical (timeliness and adequacy of treatment received) and psychometric outcome. Participants were parents or legal guardians of the child and self-identified as the child’s primary caregiver. Families were eligible if the child was younger than 8 years old and newly diagnosed with an ASD according to DSM-IV or DSM-5 criteria. Participants either received usual care or worked with a Family Navigator for 6 months. Data for this qualitative analysis included participant responses to two open ended questions at baseline and 6-month follow-up to assess the understanding of the child’s diagnosis: ( 1) “When family or friends ask you what is the diagnosis your child has, what do you tell them?” and (2) “Can you explain what that word (s) means to you?" Qualitative content analysis using an inductive approach was used to analyze for emerging themes and patterns in the data, using open coding of the narrative responses and then using axial coding to identify patterns and relationships.

Results: Over half of the participant caregivers were immigrants (see Table 1). Across the entire sample, there was an increase in the number of caregivers who could report the clinical diagnosis between baseline and follow-up (65.1% (n = 84) vs. 85.3% (n = 110), p < .000).  Among caregivers born in the U.S., 77% could name their diagnosis at baseline compared to 95% at follow-up. Among caregivers born outside the U.S., 54% could name the diagnosis at baseline compared to 76% at follow-up. Four categories emerged in terms of to whom caregivers shared the ASD diagnosis: (1) Tell no-one, (2) Only close family and friends, (3) Very open to explaining the diagnosis, and (3) Never came up, no-one asks (see Table 2). Patterns of disclosure appeared to differ between immigrant and U.S. born caregivers, but not by participation in the Family Navigation program.

Conclusions: Family Navigator and other support programs at the time of diagnosis could provide training to support caregivers’ understanding of the child’s diagnosis and assist them with the disclosure process. The findings also have implications for culturally influenced perceptions of stigma in the disclosure process.