Autism community has direct input into research

December 1, 2021

Autistic people are participating in a University of Canterbury project to highlight their priorities for future autism research.

This year researchers have been talking directly to autistic people and the autism community to find out what is important to them.

Working with a $29,000 grant from the Health Research Council, the research team ran a series of focus groups between May and July to gather views and is now casting the net more widely with a nationwide online survey.

“We want to enable as many autistic people to take part as possible. The survey has been designed with and for the autistic community. It is also open to members of the wider autism community. So we hope to gather multiple perspectives,” says University of Canterbury research lead Dr Lisa Emerson.

Lisa says there is no limit to the number of people who can participate. The team plans to release the findings in March or April 2022.

She says they have had a strong indication from the focus groups that people want research that is specific to Aotearoa New Zealand. “That preference cut across multiple groups – the need for New Zealand-specific research. That, for me, was a real stand out,” she says. “The project has gathered a lot of momentum and a lot of interest.”

Lisa is joined on the research team by fellow University of Canterbury researchers Associate Professor Laurie McLay and Dr Ruth Monk, and Dr Larah van der Meer, Research and Advocacy Advisor at Autism New Zealand.

The project team is working with two advisory groups – an Autistic Adults Advisory Group and a Partnership Advisory Group made up of family-whānau, practitioners and researchers.

Ruth, who is autistic, says the research is being conducted not for the autism community but by the autism community.

“By having an autistic researcher on the research team and by holding the views of the Autistic Advisory Group central to the design and conducting of the research, we’re trying to make sure that autistic people’s involvement in this research is safe, accessible, inclusive, and can actually translate back to our community.”

Lisa says the Health Research Council has a key role in research and the hope is that any autism research conducted in New Zealand in the future will reflect the research that autistic people here have identified as important to them.

The project has also been important in another sense. “It has provided a platform for autistic people to connect with researchers and practitioners to co-produce and conduct research with and for the autistic and wider autism communities. This connection and partnership is extremely valuable,” she says.

Members of the community are invited to contribute their views about future autism research in Aotearoa New Zealand in this online survey.

Caption: This symbol was designed to represent the vital partnership with the autistic community in this project. It was designed by autistic illustrator Chanelle Moriah in collaboration with the Autistic Advisory Group.