Autism CRC's approach to participatory and inclusive research

Producing research with autistic people and other community members

Autism CRC’s vision is to see autistic people empowered to use their diverse strengths and interests. Our mission is to motivate, facilitate, and translate collaborative autism research, across the life span and the spectrum, underpinned by inclusive practices. We are committed to inclusive research practices and co-production with autistic people and their supporters, to ensure our research provides practical and tangible outputs that benefit the community.

Autism CRC is dedicated to working with autistic people and other community members throughout the research process, from the development of research ideas and priorities, through stages of planning, implementation, dissemination, evaluation, and utilisation of research. Autism CRC has introduced a range of initiatives to support academics, autistic people, and other community members in working together to produce quality research. In addition to these Participatory and Inclusive Autism Research Practice Guides, such initiatives include the:

• Sylvia Rodger Academy Research Program, which upskills autistic adults and autism researchers to work together as research co-producers;
• Co-production Partner Initiative, which recognises organisations that have demonstrated a commitment to sustainable research co-production;
• autistic review of all project proposals, ensuring that Autism CRC research investments are relevant to, and respectful of, the autistic and broader autism communities;
• Autism CRC Awards for Achievement in Autism Spectrum Research, which recognise and celebrate achievements in inclusive research practice and the translation of research into practice;
• Australasian Autism Research Council (AARC), established to review and define national priorities for autism research, as identified by the autistic and broader autism communities.

Perhaps most importantly, Autism CRC continues to work towards establishing a culture in which autistic people are recognised as experts by experience, with valuable knowledge and skills to contribute to autism research and practice. The following inclusive research principles outline how we will keep working to nurture and grow this culture, and to empower autistic people through our research.

Inclusive research principles

Our research will be conducted in partnership with autistic people and their supporters

Autistic people and their supporters will, wherever possible, be involved in the production of Autism CRC research. Where practical, this involvement will occur at the level of co-production or higher. Autism CRC has developed and implemented a number of initiatives to support research co-production, including the Autism CRC Research Co-Production Partner Initiative, the Sylvia Rodger Academy Research Program, and these Participatory and Inclusive Autism Research Practice Guides.

We will produce high quality research that addresses the needs and priorities of autistic people and their supporters

Autism CRC research will address the issues that are important to autistic people and their supporters. In 2018, the Australian Autism Research Council (AARC) was established under the auspices of the Autism CRC, to review and define national priorities for autism research. In 2019, the AARC published a report outlining the results of a consultation with over 1,000 Australian autistic and autism community members. From this consultation, 10 key research priorities were identified: built environment; choice in living and housing; communication; education; employment; family and carer support; gender, diversity, and inclusion; health and disability service delivery; health and wellbeing; and, justice (AARC, 2019). In 2021, further consultation was conducted to identify more specific research priorities in five of these areas (AARC, 2021). In 2022, the AARC became known as the Australasian Autism Research Council as it expanded to include members from both Australia and New Zealand.

Our research will have real life, real world benefits for autistic people and their supporters. Our research will contribute to greater acceptance and inclusion of autistic people in the community.

Historically, autism research has been disproportionately skewed towards basic scientific research, including genetic and biological research (den Houting & Pellicano, 2019; Office of Autism Research Coordination, 2019). Although we acknowledge the value of basic scientific research, we seek to establish a more appropriate balance between basic and applied research, with greater emphasis on research that will produce tangible benefits for autistic people. Our research will include that which focuses on strategies for supporting, accommodating, and empowering autistic people.

We will produce research that can be efficiently translated into practice. We will develop tools and resources that autistic people and their supporters can use easily and affordably.

Autism CRC has developed a range of free and low-cost resources to ensure that autistic people and their supporters can utilise our research outputs. Examples include the myWAY Employability smart web platform, the inclusionED professional learning community, the StepWrite assistive writing app, and The Integrated Employment Success Tool. We will continue working to translate our research outputs into practical resources for the autistic and autism communities.

Our research will focus on autistic people’s diverse strengths and interests, as well as exploring support needs and the impact of context.

Our research will be strengths-based, while at the same time acknowledging autistic people’s support needs. We will take into account the impact of context, recognising that an autistic person’s abilities and support needs may vary widely across contexts.

Our research tools, processes and outputs will be accessible for autistic people and their supporters.

Our research will be accessible for autistic people as participants, as co-producers, and as an audience to research outputs. We will work to ensure that our research materials and processes meet the needs of autistic people with varying abilities and support needs. Our research outputs will, as much as possible, be freely or affordably available to autistic people and their supporters.

Our research will reflect and respect the diversity of the autistic community.

Autism CRC recognises that autistic people are a diverse community, with a broad range of strengths, interests, and support needs. We aim to meet the needs of autistic people across the lifespan, by investing in work spanning three programs of research: Early Years, School Years, and Adulthood. In addition, we acknowledge that there are many specific groups within the autistic community with unique needs, including autistic people with high and complex support needs; those with co-occurring conditions; autistic girls and women; members of the LGBTQIA+ community; First Nations people and members of racial, ethnic, and cultural minority groups; and various other marginalised and intersectional communities.

Autistic people’s contributions to our research will be acknowledged and valued.

Autistic people add value to Autism CRC research in a broad range of capacities. We are committed to fairly compensating and acknowledging these contributions. Autistic people who produce, co-produce, or consult on Autism CRC research will receive appropriate payment for their work. They will have opportunities for authorship and/or acknowledgement in written publications and other dissemination of research. Where possible, autistic research participants will also receive compensation and acknowledgement for their contributions.

We will build research capacity within the autistic community.

Autism CRC has established initiatives to provide research training to autistic adults. Through the Sylvia Rodger Academy Research Program, autistic adults are upskilled to act as co-producers and leaders of research. Through PhD scholarships and postdoctoral positions, autistic researchers have been supported to pursue and establish careers in autism research. We will continue to work with the autistic community in developing research skills and experience, to facilitate greater community control in autism research.

We will work towards addressing power inequities between academia and community members. We will build trusting and meaningful relationships between the academic and autistic communities, so they may work together in true co-production.

An imbalance of power is inherent in collaborations between academics and community members. These power inequities may be exacerbated when community members are autistic, or members of another marginalised group. Through our research and other initiatives, Autism CRC will continue working to empower autistic people, and to facilitate equitable and trusting collaborative relationships between academics and community members.