Nothing about us, without us
Autistic-led study reveals urgent priorities for supporting autistic girls and gender diverse youth.
Autistic girls, women and gender diverse people experience more physical and mental health challenges, have a shorter life expectancy, experience very high rates of sexual violence and are up to nine times more likely to die by suicide. We need urgent research and support that meets our needs
Research has always been done about us instead of with us. This needs to change. We are paving the way for change when it comes to research about autistic people in Australia. For the first time, our research agenda has been led and informed only by autistic people.
We interviewed 47 autistic girls, women and gender diverse people aged 7 and above about what research they think is important. We then surveyed an additional 411 autistic people for further feedback on our research priorities. We used this information to develop an autistic-led research agenda for autistic girls, women and gender diverse people in Australia.
• 6 key research areas were identified by autistic young people:
• Better understanding and support at school
• Understanding our experiences, strengths and challenges
• Autism specific mental health support
• Autistic friendships and relationships
• Experiences of gender diversity and
• Accommodations to make life easier for us
• 8 key research areas were identified by autistic adults, including:
• Understanding and supporting specific needs in adulthood
• Experiences of trauma, abuse and sexual violence
• Supporting mental health and wellbeing
• Addressing barriers in healthcare
• Understanding and supporting physical health needs
• Addressing barriers in education and the workplace
• Understanding the role of society, embracing neurodiversity and the importance of autistic identity and
• Co-designing research and supports with autistic people and ensuring intersectional identities and harder to reach groups are included
It is critical that future research focuses on these priorities. We are making a direct call to action by asking you to:
o Commit to research based on the priority areas
o Ensure your research is autistic-led or co-designed
Your action will ensure that autistic girls, women and gender diverse people can live their best lives.
A new study led by autistic people and researchers from the University of Technology Sydney (UTS) sheds light on the challenges faced by autistic girls, women and gender diverse people within healthcare, the education system and society.
The research paper titled ‘Nothing About Us, Without Us’: Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia, highlights the urgent need for inclusive supports to maximise the wellbeing of autistic people and provides key considerations for the National Autism Strategy that is currently under community consultation.
Study co-lead Dr Rachel Grove from the UTS School of Public Health, said the research aims to address the longstanding gaps in understanding the experiences of autistic women, girls and gender diverse people.
“Historically, autism has been viewed through a gendered lens with incorrect assumptions that only boys can be autistic, resulting in oversight and inadequate support.
“It was critical to ensure that autistic people undertook the research,” said Dr Grove.
You can read the full article here: Nothing about us, without us.
