Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand

Abstract

Background: Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ). Methods: Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups (n = 55) and an online survey (n = 450). Almost 40% of the survey respondents indicated that they were autistic. Results: The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Māori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whānau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners). Conclusions: We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ. There are no previous autism research priorities for Aotearoa New Zealand that have been determined by the autistic and autism communities. The population characteristics and social and cultural context of Aotearoa New Zealand (NZ) are unique. We wanted to find out what the autistic and autism communities think future autism research should focus on. Autistic people were essential partners in this project and contributed to the design, methods, and outputs. We carried out focus groups and an online survey of autistic people and members of the broader autism community (family, practitioners, and researchers) in NZ. In the focus groups, we asked 55 people what they thought future autism research in NZ should focus on. Three researchers (one autistic and two non-autistic) analyzed the focus group data. They read the written transcripts of the focus groups. Then, they met multiple times to talk about what they thought the ideas were and agree on the final ideas (themes). In the online survey, we asked 450 people to rate how important different autism research topics were to them. To analyze the survey data, two researchers looked at how important each autism research topic was for different community groups, including autistic adults, family, practitioners, and researchers. The results showed that the community thought future autism research should focus on the experiences of autistic people, particularly of autistic New Zealanders. Community members also thought that it was important that there is autism research that is specific to NZ, including culturally specific research for Māori and Pacific peoples. The five topics rated as most important by autistic adults were also priorities for at least one other group of people from the autism community (e.g., practitioners). Health, mental health, and well-being of autistic people was a priority topic for all groups. These findings tell us what autistic adults think is important for future autism research in NZ to focus on. The findings also show us the similarities and differences between what autistic adults think is important for future autism research, and what other people in the broader autism community think is important. The focus groups and online survey may not have been accessible to everyone who would like to take part. So we may have missed the opinion of some people. We have determined what is important to autistic people and the broader autism community for future autism research. We can use this information to inform future autism research in NZ. Funding bodies can use this information to inform their decisions about funding for autism research. We hope that the way we included autistic adults in this project will also inspire other autism research in NZ, which will make autism research more appropriate, relevant, and ethical.