Co-led research priorities a first for autism research in Aotearoa

Led by UC Senior Lecturer of Child and Family Psychology, Dr Lisa Marie Emerson, the research project invites members of the Autistic community and autism community to contribute their views on what autism research should look like in New Zealand in the coming decade. The project is also part of a larger movement within autism research to partner with the autism community not just as participants, but also as partners in conducting the research.

Dr Emerson says the project will bring a unique New Zealand perspective to current autism research.

“Community priority-setting has been undertaken internationally, but this is the first time the approach has been used in Aotearoa. We have a number of researchers in Aotearoa doing great work on understanding autism and developing effective supports for early years. But we could do more to understand autism within the unique culture of Aotearoa, which includes a health and care system that is different to overseas.

“It is important for autism research to address the needs and preferences of the Autistic and autism communities in Aotearoa, so that the research can have greater direct benefit for the community.”

With a focus on participatory research design, the project team are supported by an advisory group of Autistic adults from the community, and a second advisory group of individuals from the broader autism community. The first phase of the project involves a series of focus groups, with the second phase using the emerging themes to inform an online survey.

The project is funded by a Health Delivery Research Activation Grant from the Health Research Council and will run throughout 2021. A secondary research project focused on youth perspectives, is also being undertaken, funded by UC’s College of Education, Health and Human Development.

Project team member and Autism New Zealand Research and Advocacy Advisor, Dr Larah van der Meer says the collaborative focus is key to achieving meaningful results for the Autistic and autism communities.

“I am passionate about seeing more inclusive autism research in New Zealand, involving the Autistic and autism communities from the outset and throughout the process to better meet the needs of the community. I hope the project will support a shift to more participatory and inclusive autism research in New Zealand.”

Project team member and Autistic researcher, Dr Ruth Monk says the research will establish an ongoing partnership between the Autistic community and autism researchers in New Zealand.

“This research will allow us to repeat this study model in a few years to assess how the findings from the present research have influenced autism research funding and projects.

“Being Autistic myself, I hope this will encourage other autism research groups to actively partner with the Autistic community at all stages of autism research projects. There has been some fantastic progress happening overseas, so it would be incredible to see New Zealand follow in these steps and come to view Autistic partnership in research as not only as valuable, but as essential.”

Research project team:

• Dr Lisa-Marie Emerson – Project lead, Senior Lecturer, School of Health Sciences, University of Canterbury
• Associate Professor Laurie McLay – named investigator, School of Health Sciences, University of Canterbury
• Dr Larah van der Meer – named investigator, Research and Advocacy Advisor, Autism New Zealand and Adjunct Research Fellow, Victoria University of Wellington
• Dr Ruth Monk – named investigator, Autistic researcher, University of Canterbury and Postdoctoral Research Fellow, University of Auckland.

The team sincerely thank all of those from Aotearoa New Zealand’s autism community who have contributed their time and experience to this project.

Members of the community who would like to contribute their views about future autism research in Aotearoa New Zealand, are invited to complete this online survey*: https://tinyurl.com/9t7jvmsc

*The survey is completely anonymous and will take about 25 minutes to complete.