Reimagining health and mental health services for autistic people, their families, and carers
The Australian Government is developing a National Roadmap to Improve the Health and Mental Health of Autistic People. In support of this, Autism CRC conducted a process of co-design, research, and community engagement with its national partner network from November 2023 to February 2024. This involved conversations with almost 200 stakeholders, including autistic people from diverse backgrounds and varying abilities, as well as families, carers, health and mental health practitioners.
To gain broader insights into the needs and experiences of the autistic community, a team of researchers from Griffith University reviewed health related information from almost 5,000 autistic people, families, carers and professionals. This included queries from the national helpline Autism Connect, and information from several national data sets on health care experiences, needs and priorities. The resulting landmark report to support the Roadmap has been released by the Department of Health and Aged Care today.
Autism CRC Chief Innovation Officer and Project Lead, Cheryl Mangan, said, “There’s enormous commitment from the autistic community, health professionals, and other stakeholders to come together to co-design and develop solutions. There’s strong consensus that the stark health and mental health inequalities experienced by autistic people, as evidenced by the substantial life expectancy gap, high suicide rates, and prevalence of co-occurring conditions, must be comprehensively addressed.”
The co-design, community engagement, and research elements of this report provide critical insights into the human stories behind the statistics. Autistic people, their families, and carers share significant challenges in accessing and receiving safe, respectful, and appropriate health services. Health practitioners and providers also highlight system capacity constraints, funding barriers, and a limited understanding of autism in many practitioners impacting the availability and quality of appropriate care.
Importantly, the Department of Health and Aged Care and the Roadmap Working Group sought the perspectives of autistic people who experience greater health inequities and whose health and mental health concerns and experiences often go unheard. This includes autistic individuals who are also:
- women and girls
- culturally and linguistically diverse
- LGBTIQA+
- from rural and remote areas or low socio-economic backgrounds
- First Nations people
- living with high or complex disability needs, including those with high communication in need of behaviour support
- living in residential settings
- living with an intellectual disability or are non-speaking
- families and carers of people who identify with these priority groups.
The research was co-led by Autistic author, British Psychologist and member of the Australian Psychological Society, Associate Professor Wenn Lawson, who said, “This report signposts us towards hope that health and mental health care for all autistic Australians across all domains, will become more accessible, more appropriate and needed accommodations will be ‘a given’.”
Acknowledgements
This work would not have been possible without the significant contributions of the Autistic individuals, their families, carers, and the people who work with them who shared their experiences.
Special thanks to the community partners and teams at A4, Amaze, Autism Spectrum Australia (Aspect), Autism Tasmania, First Peoples Disability Network, National Ethnic Disability Alliance, NT Lived Experience Network, Queensland Centre for Intellectual and Developmental Disability (The University of Queensland), Spectrum Space (WA), The South Australian Rainbow Advocacy Alliance, The Autistic Realm Australia, The Autistic Self-Advocacy Network of Australia and New Zealand, and Yellow Ladybugs for their support for the research, co-design and community engagement. Thanks also to the representatives of professional societies and associations and disability peak organisations who were part of the Stakeholder Reference Group.