Listening to parents to understand their priorities for autism research.

Abstract

Involving the autism community in research increases the real-world translation and impact of findings. The current study explored the research priorities of parents of school-aged children on the autism spectrum across the home, school, and community settings. A combination of content analysis of an online questionnaire (n = 134) and Q-sort methodology (n = 9) was used. The most commonly identified research priorities in the online questionnaire were child health and well-being (home setting), socialisation and social support (school), and community awareness and understanding of autism (community). The Q-sort method highlighted different top priorities, with understanding the parent, sibling, child and family impact and stress the highest ranked priority for home, teacher/staff education and support for the school, and recognizing and supporting anxiety for the community. The implications of the findings are discussed in relation to shifting the framework of autism research to align research agendas with parental priorities.