Public Places and Social Participation : Obstacles Faced By Parents with ASD Children

Background: There has been little research into the experiences of children and families (Hanvey, 2003) when frequenting public spaces. According to the Participation and Activity Limitation Survey, social participation tends to diminish with the severity of the child’s disability or when parents lack support (Statistics Canada, 2006). Another factor that could also influence social participation is the nature of the child’s disorder. In fact, the existence of an invisible disability such as autism spectrum disorder (ASD) could impede families’ use of public spaces. According to the most recent studies, the prevalence of persons with ASD was 11.3/1000 (1 in 88) in 2008. Problem behaviours are also frequent (APA, 2013; Poppes et al., 2010). For families of children with an ASD, their problems with communication and social interactions can make it difficult to be in public spaces. Sallafranque et al. (2012) have identified numerous obstacles to social participation for children with an ASD. However, obstacles to participation have not been examined from the standpoint of presence in public spaces. Moreover, few studies have looked at the repercussions of these disorders in terms of social participation in the community. Thus, the aim of this study was to develop a profile of these families’ experiences with public spaces and to document the obstacles to their participation.

Objectives: In this communication, we present the obstacles faced by parents when they frequent public places with their ASD child.

Methods: This was a descriptive survey. Parents were recruited through parents’ associations (Quebec Autism Federation) and invited to complete an online questionnaire that took approximately 30 minutes. The questionnaire was intended for parents of children (0-21 years) with an ASD. The online questionnaire was developed based on a literature survey and the International Classification of Functioning, Disability and Health (ICF). It consisted of both closed and open-ended questions that documented the public spaces into which the families went and the obstacles to their social participation. One open question was about the obstacles that parents encounter when frequenting public places with their ASD child.

Results: About 100 parents completed the online questionnaire. The results of the questionnaire suggest that these parents visit very few public spaces. Those they visit are primarily utilitarian in nature, such as grocery stores and malls. This study showed that going into public spaces is stressful for these parents because of several obstacles. These were grouped into three categories: 1) sensory stimuli, such as sounds, lights, and crowds 2) attitudes and perceptions of other people, whether suppliers or users of services; 3) concerns for their children’s safety. The analysis also revealed that the obstacles could influence each other.

Conclusions: A better understanding of these families’ situation could become a point of reference in developing services. This could make it easier to ensure that a proposed adaptation actually meets the needs of this population and that efforts to sensitize the people involved or others who use these spaces are targeting the right issues.