AARC 2023 Update: Focus on five research priority areas

In 2019, the Australasian Autism Research Council (AARC) identified the top ten research priorities for Australia. In 2021, the AARC produced a report on the first five research priorities by providing additional details on the views of the autistic and autism community.

In 2023, the AARC produced a second report on the second five research priorities by engaging with the autistic and autism community:

1. Choice and control of housing and living

• Autistic people may have varied preferences related to their living arrangements, but environments that provide a balance of autonomy or a level of separateness and support to aid with household management is preferred
• Participants noted barriers such as affordability and accessibility of suitable housing arrangements limits autistic people’s control over their living environments
• Themes related to the role of the family, limitations in National Disability Insurance Scheme (NDIS) housing support and the role of government outside of the NDIS were also issues for consideration

2.  Family and carer support

• Awareness and acceptance of autism emerged as a strong theme
• Participants considered the impact of autism on members of the family, discussing the different areas of support relevant to autistic and neurotypical siblings
• Key areas of support identified by autistic individuals and carers included support during times of transition (between schools, starting work, changing jobs), financial support, improving autistic visibility and promoting positive autistic identity as well as the importance of consistency in social workers

3. Gender, diversity and inclusion

• Participants discussed issues with diversity and inclusion across contexts, including in education, the workplace, and health and medical services. Facilitators of inclusion and diversity were discussed alongside some of the barriers in each of these settings.
• Participants discussed the influence of gender on diagnosis due to the way autism presents in females compared to males
• Autistic people from culturally diverse backgrounds (CALD) expressed that the experience could be isolating

4. Health, disability, and education

• For health systems, participants’ responses covered the need for healthcare, being heard in healthcare, the accessibility of healthcare, and the specific areas of mental health and diagnosis
• For disability services, the focus was on how a deficit focus is primarily used, difficulties with the NDIS and the need for a focus on appropriate outcomes
• For education, participants discussed the needs within the school context as well as the transition to post-secondary education or out of the education system

5. Making built environments more accessible

• Autistic people experiencing challenges due to a lack of awareness of autism in the wider community, sensory overstimulation, interaction with neurotypical people when triggered and difficulty navigating aspects of the built environment
• Participants indicated these factors contributed to autistic people being uncomfortable and avoiding participation and engagement in some spaces
• Participants made suggestions about modifications that can be made such as sensory considerations in homes and public spaces, better education of the public about autism and better use of signage

This research was a collaborative process between two teams from Griffith University and Curtin University:

• Griffith University, led by Professor Dawn Adams: community views survey for all five priority areas
• Curtin University, led by Professor Sonya Girder: focus groups and individual interviews for all five priority areas.

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