It Is Not THEM and US – Working together for sustainable outcomes for children with autism

Abstract

With a conservative estimate of 1 in 100 children thought to be on the autism spectrum (Ministry of Health, n.d.), this article reports on findings from a preliminary exploratory national study of parents of children aged 0-21 with ASD. Using an e-survey questionnaire and focus groups, the study sought to understand the supports that were available to children with autism and their families. More importantly, it explored the supports parents perceived were most useful and effective for their children at home, after school, and in educational settings. The key findings highlighted the need for autism-specific knowledge and training for educators and caregivers, and flexibility of funding for parents to access supports and services that they perceived to be the most useful. These findings were juxtaposed by issues of availability, accessibility and affordability of services and supports. There was unequivocal support from participants for a one-stop-shop for better coordination of services, funding flexibility and closer partnerships with families. Implications are discussed and limitations identified.