Why

To ensure we provide the best opportunities for people on the autism spectrum, we must first seek input and perspectives from Autistic people and their families/carers about what matters most to them to have a good life, and the issues that may prevent them from having a good life.

We will use these perspectives to inform the future focus of ARCAP’s research.

How can we ensure ARCAP’s future program benefits Autistic people and those who support them?

The research

In line with Aspect’s participatory approach, this project engaged with Autistic people and their families to ensure our research is relevant, respectful and positively impacts the lives of people on the spectrum and those who support them.

The Aspect Research Priorities Project was shaped and steered by an Advisory Group (pictured) of Autistic people, parents of Autistic people, Aspect practitioners and researchers. The group:

• provided expert advice to ARCAP to inform the design and conduct of the project
• assisted with the promotion and rollout of the project
• provided input to the interpretation of project results
• assisted with the dissemination of results from the project.

The research project design comprised two phases:

PHASE 1

Through in-depth interviews we asked what matters most to Autistic people and their families in Australia to have a good life? We also investigated what issues may prevent them from having a good life?

PHASE 2

Using the key issues identified from in-depth interviews with Autistic people and their families/carers in Australia in PHASE 1, an online survey was devised to find out which issues Aspect participants and families/carers using Aspect services and service staff think are the most important to have a good life.

What we learnt

Publication

Merrington, H., Gibbs, V., Haas, K., Clark, T., Robinson, A., Al Ansari, M., & Pellicano, E. (2024) What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults. Autism in Adulthood.

Making a difference

By working in partnership with Autistic people we now understand their priorities for leading a good life and what is preventing achievement of a good life. Looking to the future, the priorities of Autistic people will not only define the scope of our autism practice research, but will also ensure that our work is respectful and relevant to Autistic people.

ARCAP’s research agenda will align with the priorities resulting from this study. Projects that fill gaps in research will be developed that are relevant to Aspect’s programs and services (the Aspect Comprehensive Approach) and are financially viable.

The research priorities and agenda will be included in Aspect’s strategic and business plans and subsequently inform the continued development of Aspect’s research and services. In doing so, we aim to positively impact the lives of Autistic people and support them to realise their goals and aspirations.

Research team

Project Convenor

Dr Trevor Clark, National Director, Research, ARCAP

Funding

Aspect