Parents of children with autism want more research to support their child’s wellbeing at home, socialisation at school and awareness and education in the community.
In an Australian-first study, Griffith University academics, Dr Megan Clark and Associate Professor Dawn Adams from the Autism Centre of Excellence, worked with parents of children with autism to find out their priorities for autism research.
“Involving the community in research is so important, but this often happens too late in the research process when projects have already been developed,’’ Dr Clark said.
“Increasing community engagement in autism research can increase the translation of science and improve the application of findings in practice.”
Published in PLOS One,the research found that parents wanted to see more research focussed on supporting the health and wellbeing of their child at home, more school-based research to support children’s socialisation and research to promote community awareness and understanding.
Parents were also asked to rank priorities of research in home, school and the community.
Most important in the home was research to support the parent, siblings, child and family impact and stress of autism, while research to promote more education and support for teachers was ranked most important for school. In the community, parents indicated a need for more research dedicated towards recognising and supporting anxiety.
“If we want research to have maximum impact, then it’s important we align projects with the needs and priorities identified by parents,’’ Associate Professor Adams said.
“It is this information and experience that should be informing the development and funding of future autism research.
“Priority setting is an easy way to gain insight into the lived experiences of parents and their children and most importantly, the needs that require attention. Yet, unfortunately, this is step that is often missed in the research process.”
