Sharing Their Child’s Autism Spectrum Disorder Diagnosis in Community Programs: Influencing Factors and Parents’ Perceived Outcomes on Experiences and Participation

Background: Children with autism spectrum disorder (ASD) participate in significantly fewer mainstream (inclusive) community-based programs than their peers. This matters because social participation, including in one’s community, is vital to health, development, and quality of life. Our previous research found that many parents grapple with whether sharing their child’s ASD diagnosis will increase understanding, acceptance and inclusion, or increase exclusion, in community-based programs.

Objectives: This study aims to (1) identify factors associated with whether a parent shares a child’s ASD diagnosis in community-based programs, and (2) explore parents’ perceptions of how sharing this information influenced their child’s experiences and participation in community programs.

Methods: Parents of children with ASD from Canada and the United States completed an online survey hosted through REDCap. The survey included child and family demographics (e.g., child age, communication ability, presence of disruptive behaviours, size of community, identified culture, etc.), the number and types of mainstream community programs in which the child with ASD participated (past and present), what information was provided about a child’s ASD diagnosis and by whom, and open-ended questions, including, “How did sharing this information influence your child’s experience in this program?”. Multiple logistic regression analysis will be conducted to identify child, family, and/or program factors associated with whether diagnosis was shared. Qualitative responses to the open-ended question will be thematically analyzed.

Results: To date, n=82 parents, with n=92 children with ASD (mean = 8.97 years, range 2-20 years) have completed the survey (closes December 31, 2018). Most parents chose to share their child’s ASD diagnosis within community-recreation programs; however, 17 (22%) participants did not disclose their child’s ASD diagnosis.

Conclusions: Findings will increase understanding of factors associated with, and parents’ perceived outcomes of, sharing (or not sharing) their child’s ASD diagnosis, including outcomes related to social participation and inclusion. This knowledge may inform future research and community practices on how to improve inclusion and participation in community-based programs for children with ASD.