Listening to Parents to Inform Autism Research

Background:

Most studies setting the priorities for autism research have focused on the early intervention years (Ghanadzade et al. 2018; Pitchet et al. 2011; Rodger, Braithwaite & Keen, 2004), or the daily priorities for adults on the spectrum (Gotham et al., 2015). Therefore, we do not have a good understanding of what the priorities should be for autism research in the school years. With an increase in prevalence of Autism Spectrum Disorders (ASD), now affecting 3% of school children aged between 7 and 17-years (Blumberg et al. 2013), establishing research needs and priorities is important to inform future autism research, that can best support the learning outcomes of school aged children with ASD.

Objectives:

Researchers are beginning to understand the benefits of involving members of the autism community in setting priorities for autism research. This study aimed to investigate parents’ priorities for the future focus of autism research to support their school age child with ASD across the home, school and community environments.

Methods:

A sample of 116 parents of school age children with ASD responded to an online questionnaire which included general demographics and more specific questions to determine parent's research priorities. Parents were asked to nominate their top three priorities or research areas that they wanted to see as the focus of future autism research in the home, school and community settings, from most to least important.

Results:

The data was analysed using thematic analysis. Parent priorities for autism research in the home were explored first, where family support, daily living skills and behavioural difficulties emerged as the three most prevalent priority themes for future research in the home. Parents identified that teacher knowledge and experience with disability, research exploring social relationships and research into academic and learning outcomes as the areas of priority for future school-based research. Within the community setting, research to promote awareness and understanding within the community and greater inclusion were of the highest priority for many parents. In addition, many parents wanted to prioritise research exploring ways of adapting the community environment and community activities to better support the needs of individuals on the spectrum.

Conclusions:

Involving members of the autism community in priority setting for autism research increases community engagement and can improve the translation of autism research to maximise the impact of future autism research where it is needed most.