Date Presented 03/26/20
A program was launched in 2016 to draw a portrait of the social participation of adults with ASD and identify barriers and facilitators to their social participation. We conducted an online survey with 16- to 40-year-old adults with ASD (n = 201) and with parents of adults with ASD (n = 107). Areas investigated included: education, work, leisure, housing, and responsibility from the Human Development Model conceptual framework—Disability Creation Process (HDM-DCP).
Primary Author and Speaker: Melanie Couture
Contributing Authors: Claude Normand, Claudine Jacques, Julie Ruel, France Beauregard, Stephanie Fecteau, Jade Berbari
PURPOSE: The prevalence rate of ASD is increasing globally, reaching one in 68 people in the United States (1), while it is 1 in 64 in children aged 5 to 17 years in Canada (2). A program was launched in 2016 by two Quebec organizations (FRQSC and RNETSA) to draw a portrait of the social participation of adults with autism in Quebec and to identify potential barriers and facilitators to their social participation. Indeed, in order to develop adequate intervention program to support people with ASD, it seems necessary to better understand their needs in terms of social participation. This study aims to present the overview of the social participation profile of respondents, as well as the barriers and facilitators they encounter or have encountered in the areas of education, work, interpersonal relationships and community life.
DESIGN: A large study, which included an online survey of 16- to 40-year-olds with ASD, was conducted. A specific version designed for parents of adults with intellectual limitation who could not themselves participate was also available. Social participation was defined with the Human Development Model conceptual framework – Disability Creation Process (HDM-DCP) and is seen as the result of the interaction of personal and environmental factors. According to the HDM-DCP, life habits are grouped into two classes: “current activities” and “social roles”. We focused on one main current activity: Housing, and all 6 social roles: responsibility, Interpersonal relationships, community, education, employment, and recreation (leisure).
METHOD: The survey was developed based on previous work from our team members. It was also validated by an expert committee. Finally, before the official launch of the survey, it was pretested online with the targeted populations (parents and adults). It was designed to take approximately 30 minutes to complete online. participants were recruited through social media and community partners of the research program.
RESULTS: 201 adults (women: 63%) with a valid diagnosis of autism and 107 parents completed the survey (24% : daughters). Adults with ASD were mostly workers (full-time: 39%; part-time: 15%; self-employed: 12%), studying (27%) or without formal occupation (15%), whereas parents of adults with ASD reported that 55% of them were studying and 29% had no formal occupation. Barriers and facilitators measured include: 1- characteristics of autism, 2- personal attitudes or beliefs or surroundings, 3- structural characteristics of the environment, 4- transportation, 5- access to support resources (personal help or professional services); and 6- financial aspects. Further analyses are currently underway for each of the category identified from the HDM-DCP.
CONCLUSION: The portrait of the social participation reported by the adults themselves (no intellectual disability) contrast sharply with the portrait conveyed by the parents of adults with ASD which had in a higher percentage an intellectual disability associated. The large proportion of women who completed the survey who had a very late diagnosis is also challenging in regard to our capacity to identify autism in little girls and adolescents.
References
U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. (2014). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010. MMWR Surveillance Summaries, 63(2), 1-21.
Agence de santé publique du Canada (2018). Trouble du Spectre de l’Autisme chez les enfants et les adolescents au Canada, 2018. Ottawa, Canada.
