Participation profiles and the barriers and facilitators that impact on participation of children with Autism Spectrum Disorders living in regional and remote Western Australia

Abstract

Background: Autism Spectrum Disorder (ASD) is a heterogeneous condition, influencing participation in activity and occupation. Approximately, 1% of Australian children have an ASD diagnosis, with many of these families living in remote and regional areas. Given the environments role in facilitating or hindering participation, there is a need to understand how geographical location impacts the participation profiles of children with ASD. Objective: This study aims to describe the participation profiles, and environmental barriers and facilitators to participation for children with ASD living in regional or remote Western Australia. Methods: A total of 32 families completed a questionnaire pack including a socio-demographic questionnaire and the Participation and Environment Measure-Children and Youth. Results: Children with ASD had reduced participation in community activities. Within the home, children most commonly participated in computer and video games, and in school settings, children participated rarely in non-classroom and extracurricular activities. Parents reported a desire for their children to decrease time spent engaging in video games and increase time spent in the community, socializing, engaging in extracurricular activities, and completing chores. Parents reported a number of barriers to participation across community, home, and school settings. Conclusion: Children with ASD living in regional areas had restricted participation profiles and a number of barriers to participation as reported by their parents. There is a need for additional support and services in non-metropolitan areas for families of children with ASD to increase participation. This study also highlights the need to expand the definition of participation in the International Classification of Functioning, Disability and Health to include aspects of involvement.

Participation of Children With Autism During COVID-19: The Role of Maternal Participation

“…This is consistent with a recent study ( Kaya Kara et al, 2021 ) examining participation of children with ADHD at home during the pandemic, and with prepandemic evidence among children with autism ( Simpson et al, 2018 ). Aligned with previous studies ( Egilson et al, 2018 ; Mattinson et al, 2018 ), children in our study were more involved in computer/video games and watching TV compared with other home activities.…”

“…among children with autism (Simpson et al, 2018). Aligned with previous studies (Egilson et al, 2018;Mattinson et al, 2018), children in our study were more involved in computer/video games and watching TV compared with other home activities.…”

“…Nevertheless, the pandemic may have intensified these patterns as families had to stay at home, and additional obstacles to engagement in outdoor community activities existed (Narzisi, 2020). To illustrate, in the community, children most frequently participated in religious or spiritual activities, which is somewhat inconsistent with pre-COVID research, where unstructured physical activities were most frequent (Mattinson et al, 2018;Simpson et al, 2018). A possible explanation includes tighter public health restrictions for outdoor community activities than for religious or spiritual activities that are often employed during crisis and may lead to better mental health outcomes during COVID-19 (Lucchetti et al, 2020).…”

Sitting on the Sidelines: Disparities in Social, Recreational, and Community Participation Among Adolescents with Autism Spectrum Disorder

“…Although these individual level factors serve as significant barriers, it is also necessary to consider the larger context in which these activities occur in order to develop targeted interventions that improve the accessibility and inclusiveness for adolescents with ASD. Caregivers, teachers, and self-advocates have already identified many environmental barriers to participation including a lack of suitable and accommodating activities, cost, peer rejection, and adult and staff attitudes (e.g., lack of understanding from activity leaders; Askarai et al, 2015; Egilson et al, 2017 ; Ghanouni et al, 2019 ; Krieger et al, 2018 ; Mattinson et al, 2018 ). In contrast, facilitators of participation include accommodating activities, trained staff, having a case manager to coordinate activities, transportation, social supports (e.g., existing friendships, parental support), and school services ( Askari et al, 2015 ; Dovgan et al, 2019 ; Krieger et al, 2018 ; Myers et al, 2015 ; Pence & Dymond, 2015 ).…”

The Influence of Child-Related Factors on Caregiver Perceptions of Their Child’s Sustained Participation in a Community Football Program: A Study of Children with and without Neurodevelopmental Disorders

“…It is possible therefore that the higher rate of season incompletion in children with NDDs may be more closely linked to environmental factors. For example, transportation [ 32 , 43 ], limited financial resources [ 8 , 43 , 44 , 45 ] and poor staff–child ratios [ 18 ] have been identified as barriers to the participation of children with NDDs in OPAs. Further, the limited availability of accessible and safe facilities and equipment [ 16 , 32 ], poor weather [ 32 ] and perceived stigma or negative attitudes from other families can also act as barriers [ 17 , 18 ].…”