Setting the agenda: how girls, women and gender diverse people are shaping autism research in Australia

By some estimates, 80 per cent of autistic girls remain undiagnosed at the age of 18. That’s a whole childhood without understanding and support, and for many, years more of adulthood without being able to embrace their autistic identity.

But even as we learn more about the prevalence of autism in girls, women and gender diverse people, the pendulum — and the foundational research evidence that underpins this field — is yet to fully swing back to the centre.

In response, Dr Grove established an autistic research team to lead a two-year project to create an autistic-led research agenda for autistic women, girls and gender diverse people in Australia.

A lot of the diagnostic tools that we have developed and research that has been conducted has been based on samples made up of young males. 

– Dr Rachel Grove, Chancellor’s Postdoctoral Fellow, UTS School of Public Health.

That’s why a lot of girls, women and gender diverse people have been misdiagnosed or diagnosed later in life.  

This project seeks to address the lack of representation of girls, women and gender diverse people in autism research, and it also acknowledges the fact that historically, autistic people of all gender identities are largely absent in research projects intended to represent their interests.  

In the last five to ten years, there have been attempts to develop research priority areas for autism research, but often, only a very small number of autistic people have been included in that research.

– Dr Rachel Grove

Traditionally, it’s been parents or health professionals who are invited to speak on behalf of autistic people. Those are valid perspectives, but autistic people want to speak for themselves.

Dr Grove’s project puts autistic lived experience front and centre of the research experience, with a working group of autistic researchers and community partners established to guide the project. Autistic members of the research team included autistic parents, disability advocates, a psychologist, gender-based violence advocates and included both autistic women and non-binary people.

This team interviewed 47 autistic girls, women and gender-diverse people aged seven and up and developed two sets of research priorities — one for adults and one for young people — in response to their stories and experiences.

A Social Impact Grant enabled the next stage of the work: Dr Grove and her collaborators circulated the draft agenda among the autistic community, receiving feedback from 330 adults and 81 young people that they then incorporated into the final version.

We included our draft research priorities in an online survey and asked people to rate the different priority areas in order of importance. We also asked people to tell us if there was anything else we’d missed. Some of the comments we got from this were really helpful and insightful.

The researchers also drew on the Social Impact Grant funding to develop a video, a one-page infographic report and a website to help promote and disseminate the findings among the autistic and research communities.

The agenda was launched via webinar in November 2022 for almost 100 people, including autistic people, parents and carers, health professionals and researchers, and it’s now freely available to academic and community researchers in Australia and beyond.

Dr Grove hopes that the wider research community will embrace it as an example of lived-experience-led research that amplifies autistic voices as key to future initiatives designed with them in mind. 

The idea is to put it out there and say, ‘This is what the community is saying they need, and this is what your research should be focusing on.

It’s really designed for everyone to use.

Key research areas identified by young people 

1. Better understanding and support at school
2. Understanding our experiences, strengths and challenges
3. Autism specific mental health support
4. Autistic friendships and relationships
5. Experiences of gender diversity
6. Accommodations to make life easier for us

Key research areas identified by adults 

1. Understanding and supporting specific needs in adulthood
2. Experiences of trauma, abuse and sexual violence
3. Supporting mental health and wellbeing
4. Addressing barriers in healthcare
5. Understanding and supporting physical health needs
6. Addressing barriers in education and the workplace
7. Understanding the role of society, embracing neurodiversity and the importance of autistic identity
8. Co-designing research and supports with autistic people and ensuring intersectional identities and harder to reach groups are included

The problem
The voices of autistic people, particularly those who are female or gender diverse, are often lacking in research intended to represent their interests. Centring the experiences of girls, women and gender diverse people in autism research is crucial to delivering academic and community research that responds to the needs of the autistic community.

The response
A collaborative research team in the UTS School of Public Health embarked on a project to disseminate and launch an autistic-led research agenda for autistic girls, women and gender diverse people. This project places a list of clear, actionable autism research priorities straight into the hands of academic and community research teams across Australia.

What helped accomplish this?
This project was led by an autistic working group that guided the development of the research agenda and its dissemination. Funding from the Social Impact Grant was critical in paying the working group participants who contributed their time to this project. 

What has changed as a result?
This project empowered autistic women, girls and gender diverse people to play a key role in shaping autism research that accurately reflects their needs and aspirations. The working group that was established to support this project are continuing to collaborate together on autistic-led research based on these research priority areas. 

Download full case study