Participation in Mainstream Versus Disability-Specific Community Programs for Children and Youth with Autism Spectrum Disorder

Background: The World Health Organization has identified social inclusion and participation as a vital part of health, development and quality of life. In line with a philosophy of social inclusion and participation, the ratification of the United Nations Convention on the Rights of Persons with Disabilities obligates countries to take action to ensure that “community services and facilities [...] are available on an equal basis to persons with disabilities” (Article 19). However, research shows that children with autism spectrum disorder (ASD) participate in significantly fewer mainstream (inclusive) community-based programs than their neuro-typical peers.

Objectives: This study aims to (1) identify factors associated with a child’s participation in community-based programs, and (2) explore parents’ reasons for choosing mainstream versus disability-specific 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, “What led you to put your child in a mainstream community program(s) versus a disability-specific program(s)?”. Multivariable regression analyses will be conducted to identify child, family and/or program factors associated with the number and types of mainstream community programs in which a child participates. 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 (survey closes December 31, 2018). Children participated in an average of 1.22 mainstream community programs. Twenty-eight (31%) of children with ASD had never participated in mainstream community programs, whereas 22 (24%) participated in five or more.

Conclusions: Research on inclusion and participation in community programs for children with ASD is limited. Findings from this study can start to fill this gap by increasing our understanding of the types of community programs in which children with ASD participate, and factors associated with, and parents’ reasons for choosing, mainstream versus specialized community programs for children with ASD.