Macquarie University has a strong focus on collaboration, believing that when we all work together, we multiply our ability to achieve remarkable things. The university has long had an interest in autism research, as well as a strong focus on cognitive science and inclusive education. It is now helping autistic people lead flourishing lives by combining world-class research with public engagement and impact.
Led by a team within the Department of Educational Studies, their strategic objectives for engaging in research co-production include:
- Creating co-production partnerships with key autistic self-advocacy organisations in Australia
- Reviewing the nature and extent of current co-production practices in Australian autism research (as part of a project with Autism CRC)
- Developing a framework for evaluating the implementation of participatory autism research practices (as part of a project with Autism CRC) and utilising that framework in co-produced research
- Mentoring autistic and non-autistic early-career researchers and other stakeholders in developing participatory – and eventually, co-production – partnerships.
Co-production in action
The Participatory Autism Research project is designed to understand research co-production practices within the Autism CRC. Dr Jac den Houting, an autistic scholar, and Prof. Liz Pellicano lead this project, in consultation with an Autistic Advisory Group. Dr den Houting and Prof. Pellicano have worked collaboratively throughout this project, ensuring that both autistic and non-autistic perspectives are reflected at all stages of the research process.
The researchers use weekly face-to-face meetings and regular email contact to discuss, and make decisions about, project design, implementation, and interpretation of results. Frequent contact has allowed the researchers to form an open and trusting working relationship, which facilitates the sharing of power and decision-making control between autistic and non-autistic colleagues.
An Autistic Advisory Group, comprised of five graduates of the Autism CRC’s Research Academy, provides regular consultation on the project. The members of the Advisory Group participate in web-conference meetings with the researchers, and make additional contributions through email and video recordings. They have provided feedback on survey development and aspects of the ethics application, leading to significant revision of project materials to increase accessibility. The Advisory Group have also provided guidance on the interpretation of quantitative and qualitative results from the survey, and have contributed to the development and revision of our interview template. The research team maintains a record detailing specific recommendations made by the Advisory Group, and subsequent actions, which keeps the team accountable and also demonstrates the impact of the Advisory Group. Between web-conferences, regular email updates keep Advisory Group members abreast of project progress.
Jac and Liz have also conducted a project examining the distribution of Australian autism research funding over the past ten years. The results of this project have been published in the Journal of Autism and Developmental Disabilities.
The Hidden Histories project, which is looking at the untold histories of late-diagnosed autistic adults, is being co-produced by non-autistic researchers and autistic collaborators, including two autistic research assistants and the three members of an Autistic Advisory Group. The project is still in its initial stages but the team have already worked very closely together to make decisions about the nature of interview process, which has ensured that the methods are thorough, supportive and respectful of autistic participants’ needs and wishes. The Autistic Advisory Group have also provided significant input into the methods and consent process, and revisions were based on their input.
Submissions for our Research Co-Production Partner Initiative for 2019 are now open. Nominations close 13 December 2019.