Research priorities for autistic girls, women and gender diverse people in Australia

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:

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

8 key research areas were identified by autistic 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

It is critical that future research focuses on these priorities.

We are making a direct call to action by asking you to:

• Commit to research based on the priority areas
• 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

Welcome everyone, and thank you for attending our webinar today. 

We are excited to be presenting our autistic-led research priorities for autistic girls, women, and gender diverse people in Australia. Research has always been about us, instead of with us, and we are proud to be part of a project  that has paved the way for future research for autistic girls, women and gender diverse people in Australia. 

First of all, I'd like to do an acknowledgement of country. I acknowledge the Peerapper people of Lutruwita who are the traditional custodians of the land on which I'm coming from today, and I'd like to pay my respects to their elders past, present and emerging. I recognise their continued connection to the land and waters of our beautiful place and acknowledge that sovereignty was never ceded. It was and always will be Aboriginal land. I would also like to pay my respects to the activists, advocates and change makers, past and present for autistic people who have fought and still continue to fight for our rights, safety and equality.  

I'd just like to let you all know that there'll be a Q and A session at the end, so please feel free to pop questions in the Q and A function at the bottom of your screen throughout the webinar, and then we'll be able to come to them at the end. We'll also be recording today's session  and you would've received a little popup  that mentioned that to you as you come in  and the recording will be available later for you to access,  both on the website that we'll be launching,  that will have the video and the report there in the future,  but also the link to the recording,  will be emailed to you after the webinar.  I'd like to hand over now to Rachel,  to introduce our research team  and give some background information  about our research project.  

Thanks very much Tess.  I’m Rachel Grove.  I'd also like to acknowledge the Awabakal people,  the traditional owners of the lands that I'm on today.  I'd love to start by introducing you to our research team.  I'm a researcher from  the University of Technology Sydney,  and I've previously worked at  the University of New South Wales and the Autism CRC.  I'm also a clinical psychologist,  with experience working with neurodivergent people  and their families, particularly with autistic women,  girls, and gender diverse people.  I have a passion for and commitment to autistic-led  and authentically co-designed research  and I feel so privileged to be a part of this project  and to have the opportunity  to work with this incredible team.  

Hayley Clapham is an autistic woman  with a passion for participatory research  and advocating for the rights,  needs and interests of disabled people.  Hayley has worked with the Autism CRC,  the Autistic Self Advocacy Network of Australia  and New Zealand, Women with Disabilities Australia,  and held research advisory board positions  at Macquarie University and the University of

Queensland.  She's currently studying a Bachelor of Psychology  and working as a research assistant at Macquarie University.  

Tess Moodie is a disabled, autistic,  queer First Nations person  and passionate advocate in LGBTQIA+  and disability rights and the prevention of violence  against women, girls, and gender diverse people  with disabilities.  Tess also works for Engender Equality Tasmania,  supporting survivors of family and sexual violence  to engage in media, public speaking and legislative change.  

Gabrielle Hall has a professional background  in mental health and community nursing  and is also trained in holistic health.  Gabrielle is currently a research assistant  and consultant for autism academic research  and private research organisations.  She's also a board director for Amaze  and is in her second term as a member  of the Victorian Disability Advisory Council.  Gabrielle is an autistic parent  with two neurodivergent children.  Sarah Gurrin is an autistic ADHDer,  that runs a private practise on the Gold Coast.  Having previously been a primary school teacher,  she predominantly works with children age four to 14 years.  Sarah has a special interest in working with girls,  women, and gender diverse people.  We would also like to acknowledge Dawn-Joy Leong  as well as previous advisory group members  who contributed to the initial stages of the project,  and we'd also really like to thank everyone  who shared their stories and insights  as part of this research  and other autistic advocates who are fighting  for the rights of autistic women,  girls and gender-diverse people in Australia.  

Now I'll provide some background information  about the project.  

Why is this research important?  

We know that autistic women, girls,  and gender diverse people experience health inequities,  such as shorter life expectancy, increased risk of suicide,  more physical health problems,  increased mental health conditions,  and more sexual violence.  They also have additional needs related to health  and wellbeing, including sexual health,  pregnancy and childbirth and periods and menopause.  However, despite this, they report more barriers  to accessing services and are underrepresented in research.  So, we need urgent research that meets the needs  of autistic girls, women and gender diverse people.  

We know that research priorities have traditionally been set  by researchers, parents, or health professionals.  There is a need to preference the voices  of autistic people, especially those  who are less represented in research.  While recent efforts have included the perspectives  of autistic people,  we wanted to develop a fully autistic led  and informed research agenda.  Young people have also been left out of the conversation,  or considered too young to provide their own perspectives.  It was really important that this study was co-produced  and autistic-led.  This means that autistic people were included from the outset  and at all stages of the research project.  An autistic advisory group was formed  at the beginning of the project  and they formed an integral part of the research team.  All of our interviews throughout the project  were also conducted by an autistic woman.  So, we aimed to ask autistic girls,  women and gender diverse people age seven and above,  about their priorities for research.  This included cis women and girls, transgender  and non-binary, gender diverse people,  and anyone who was socialised, or identifies  as a woman, or girl.  

There were two stages to our project.  First, we conducted in depth interviews with 31 adults  and 16 young people, aged between 7 and 63,  and we asked them about their experiences,  needs, and preferences for research.  We used this information to develop  11 draft priority areas for adults  and six priority areas for young people,  and these also included a number of sub themes  under each broad research area.  So, this draft research agenda  was used in the second part of the project,  in which we surveyed 330 adults  and 81 young people to get their feedback  on these draft priority areas,  and they were also asked to indicate  whether there were any additional research areas,  they thought were important.  These responses were then further refined  by the autistic advisory group,  until a consensus was reached on the research priority areas  for autistic adults and young people.  And an autistic young person was also part of developing  the final priority areas for young people.  

At the outset, we aimed to capture people  from a range of backgrounds and identities.  Despite this, the majority of people we spoke to,  were from a white European background,  with high levels of education as well as people  without intellectual disability  and who used spoken communication.  However, our survey did capture the perspectives  of people with intersectional identities,  73% of the autistic adults in our survey,  identified as being part of another marginalised group.  51% were from the LGBTQIA+ community, 26% were from rural regional areas, 9% were from a culturally  and linguistically diverse background, 6% were migrants and refugees and 3% were First Nations people.   80% of the autistic young people in our survey  also identified with being part of  another marginalised group.  Almost half were from the LGBTQIA+ community,  31% from rural or regional areas,  14% from a culturally and linguistically diverse background,  and 7% were First Nations people.  So, I’d now like to hand back to Tess  to take us through some of the findings from the project.  

Thanks, Rachel.  

Now we're going to share with you the research priorities  that we identified as part of our project  and to lead into us presenting some more detailed  information on this,  we have a lovely little video that has been developed  by Emma from Rowland Studio,  that we'd like to play for you all.

[Narrator] 

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 age seven 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.  Six 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.  

Eight 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 and education in 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 commit to research  based on the priority areas and 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.  

Thanks again to Emma from Rowland Studios  for working with us on developing that video.  I'd now like to just take us through some more detail  on the research priorities that were included in that video,  and I'll start by talking about what young people told us  were the priorities for them. 

 So, for young people the demographics,  we found that between 65 and 80% of autistic young people  in this project identified as female.  Between 19 and 25% identified as non-binary,  or other gender identities.  A larger proportion of people had an intellectual disability  in the interview phase of the project,  with more non-speaking people contributing to our survey.  More than 75% of young people had an additional  mental health condition,  and physical health conditions were noted  in 30 to 56% of young people.  

So, the biggest priority for young people was around school,  being better understood and supported in school.  And young people emphasised the importance  of providing education for teachers about autistic girls  and gender diverse people and understanding  how the structure of mainstream school  doesn't always work for them.  Young people wanted research that's about understanding  and accepting that people cope and learn in different ways  and how they can be better supported in school,  particularly in regards to sensory  and self-regulation needs.  This research priority is also related to understanding  the experiences of bullying  and also their different experiences of learning.  And there's a couple of quotes there just on the screen  that were taken directly from young people.  This quote, we've pulled this one out because  it sums up the research priority area really well: "School should improve a bit on how much  the teachers know about autism in general  and neuro divergence, ADHD,  all these different things, because it's very common  and schools aren't always set up to help these kids,  I think there could be quite a lot of improvement  in the education system".  

The second research priority outlined the need for research  that is focused on understanding both the strengths  and the challenges of autistic young people,  and this priority highlights the need for research  to understand sensory differences,  the importance of stimming and self-regulation,  as well as the experiences of puberty  and physical health needs.  It also related to the understanding,  to understanding the impact of gender roles  and stereotypes in society and the effect that this has  on autistic girls and gender diverse young people.  Throughout our research,  we also heard stories about strengths: "I think it's my ability to accept people for who they are.  I think I'm a very genuine person  and I can see people and I can very much see  what they might be struggling with  and what strengths they might have".  

The third research priority outlines the need  to support the mental health of autistic girls  and gender diverse young people,  and this includes understanding misdiagnosis,  as well as the impacts of masking  on our mental and physical health.  There is also a need for research that aims to understand  the role of social pressures on our mental health  and how we can change mental health support  to suit autistic young people.  This quote describes the impact  of these social pressures really well: "There's a pattern at least of autistic people,  girls in particular,  crashing in their early teens sort of thing, because of having to deal with increased social pressures".  

The fourth research priority area relates to  the need to understand differences  in autistic friendships and relationships.  This includes different communication needs  and social preferences.  This priority area also highlighted common experiences  such as feeling like you don't belong  and the importance of friendships  with other autistic people.  This quote highlights the challenges  that autistic young people face: "I can get very stressed with too much social stuff,  which is hard because I'm actually a very social person.  I really like being around people.  If I spend a lot of time with people,  "I have to take a few days to recover".  That quote's even valid for us  who aren't young people anymore.  

The fifth research priority emphasises the need for research  that focuses on acceptance and affirmation  of gender diversity and the supports that autistic  gender diverse young people may need to be supported  to live their lives in their whole identity.  This young person described the challenges  of being supported as an autistic,  gender diverse young person: "Because there's an insanely high amount  of gender diverse and LGBT people on the autism spectrum,  my way of looking at it is focus on support first". 

The final priority identified  was about how to make life easier for autistic young people.  This includes challenging what other people think autism is,  as well as knowing what support autistic girls  and gender diverse people need,  including support across their lifetime  and how to access this support.  Young people also highlighted the need for changes  to the diagnostic process,  to ensure that autistic girls and gender diverse people  are diagnosed and supported early.  This priority area also highlighted the importance  of including autistic people in the conversation,  when it comes to research.  Young people emphasised that being autistic  is something to be proud of.  This shows the need to change the world to fit us,  rather than expecting autistic young people to adapt,  something that has significant impacts  on their health and wellbeing.  

I'd like to hand over now to Hayley,  who will present the research findings  that we had for adults. 

Hi.  I will now provide some further detail  on the research priorities identified by autistic adults.  So, 80% of the autistic adults in our research  identified as female, with 20% identifying  as non-binary, or gender diverse.  About 45% of the people that we spoke to,  were also autistic parents.  There were very small numbers of people  with an intellectual disability  and who did not use spoken communication.  Mental health conditions were reported by  80 to 90% of people, and physical health conditions  were also reported by 50 to 60% of people in this project.  

So, the first research priority area identified by  autistic women and gender diverse people  was related to the need for research  that aims to understand autism across the lifespan  and develop support programs that are designed  for autistic adults.  This research priority area also indicated the need for  research about the experiences  and needs of autistic parents.  Research is also needed that focuses on understanding  the day-to-day challenges of autistic adults,  as well as friendships, relationships,  and experiences of homelessness and financial insecurity.  Less than 30% of the adults we spoke to  currently had access to NDIS funding.  This highlights that there are many autistic adults  not currently receiving support  and the unaddressed barriers for autistic women  and gender diverse people to apply for  and receive NDIS funding.  This quote sums up the first priority area well:  "It's like once you're out of nappies, no one's interested.  No one wants to know about an autistic adult".  

So, the second priority area highlighted  the importance of understanding the experiences of trauma,  abuse and sexual violence.  There is an urgent need for research  that focuses on how to support autistic women  and gender diverse people who have experienced trauma,  or who are victim survivors  of the many forms of abuse and sexual violence.  This highlights the need for trauma informed research  and services that are co-designed with autistic people.  This quote emphasises the systemic challenges  that autistic women and gender diverse people  deal with when reporting abuse, or getting supports: "How do you prove child abuse?  How do you prove spousal abuse,  when no one believes you at the time?  The whole system is intrusive and abusive".  

The third priority area highlighted the need for  research that is focused on supporting the health  and wellbeing of autistic women and gender diverse people.  This includes understanding misdiagnosis,  autistic burnout and co-designing supports  and therapeutic approaches that suit autistic people.  The priority area also focuses on  the importance of providing support for autistic people  from a range of backgrounds  and those with high support needs.  Research needs to focus on developing  autistic-led models of well-being  in order to understand "How to help autistic people have a good life  on their own terms".  

The fourth research priority emphasises  the need for research into the health inequalities  experienced by autistic women and gender diverse people  and identifying areas for change.  This includes providing inclusive diagnostic practices  and access to services.  There is also a need for research into understanding  the experiences of navigating the health system,  including medical gaslighting due to the emphasis  on the medical model of autism  and the male bias within the system.  These experiences were commonly reported in our research.  This priority also outlines the need to develop education  for healthcare professionals about the needs of  autistic women and gender diverse people.  This autistic adult spoke about their experience of  navigating the healthcare system: " Nine years of the same specialist  and really it's only been in the last couple of years  that he's starting to listen to  some of the things that I have to say".  

So, this research priority area outlines  the importance of recognising and supporting  the physical health needs of autistic women  and gender diverse people.  This includes sexual and reproductive health, pregnancy,  childbirth, puberty, periods and menopause.  This research priority also outlines the need for research  into understanding co-occurring physical health conditions  including how physical health conditions  may present differently.  This quote sums up a common experience  that was described by autistic adults in our study: "I've got so many things wrong with my body  and I just do my best to keep on going.  I just do my best to keep functioning".  

The six priority area identified the need for research  that aims to understand and address barriers  within the education system and the workplace.  Autistic women and gender diverse people  spoke about their experiences in a range of  education settings from specialist schools  to the tertiary system.  This priority area also emphasises the barriers  to obtaining and in maintaining employment.  65 to 70% of the people we spoke to were employed,  which highlights the challenges of autistic people  in finding and maintaining employment.  There's also a need to understand how to provide support  in education in the workplace,  as well as how teachers and employers can be educated  about assisting autistic women  and gender diverse people within these systems.  As one adult stated: "The infrastructure isn't there,  or the education isn't there.  It really is massive issue of equality  and equity and I just think, I feel,  I'm always just hanging onto my job and the only way I can do it is to play the part".  

The next priority area outlines the importance  of understanding the impacts of stereotypes  and gender roles in society.  This results in the daily experience of trauma  for autistic women and gender diverse people,  which they describe as being due to "living in a world  that's pretty much not about us".  This research priority also focuses on celebrating  and supporting the strengths and the importance  of autistic identity and community.  This quote highlights the importance of  providing research that is from the perspective  of the neurodiversity paradigm: "Research into how you assist autistic people  to deconstruct a life that was constructed by neurotypicals and then use a different framework to actually allow them to construct a life that's actually based on their values".  

The final priority area highlights the need  to provide research from an autistic perspective.  This needs to be from the perspective of all autistic people,  including people with intersectional identities,  harder to reach groups, and with different support needs.  This priority area also emphasises the need for supports  and services to be co-designed with autistic people.  This quote sums up this priority area  and how all research with autistic people  should be conducted: "We need more research on understanding it from the autistic perspective rather than layering non-autistic perspective over the top because it's so deficit based".  

How we hope these findings will be used.  

As we have mentioned,  one of the priority areas is around co-designing research  and supports with autistic people  and prioritising the voices of people with intersectional identities,  those from harder to reach groups  and with different support needs.  Even in our own research which attempted to prioritise these voices from the start, some autistic people were still made to feel invisible.  This needs to change.  We need research that focuses on the needs of  autistic women with high support needs,  research into the specific issues  based by multiply marginalised people,  being in a rural community  and the impact that has on autistics.  

We need to change our research culture,  so that all autistic people can feel included  and prioritised by research.  This means working with these communities  and designing research that meets their needs.  This means changing our research methods  to be more accessible to people  with an intellectual disability  and to non-speaking autistic people.  We need to also move away from the deficit medical model,  to understand autism from the social model of disability  and the neuro diversity paradigm,  to challenge the systems that support them. There is also a need to focus more on the areas of research  that are important to the autistic community  and will have a direct and positive impact on their lives.  

As demonstrated in the video,  we're again making a call to action to ask you to join us,  in improving the quality of life of autistic girls,  women and gender diverse people.  To enable this to happen,  it's absolutely vital that you make some commitments.  We are asking you to commit to research  that focuses on the priority areas that are identified,  by the autistic people that we spoke to  and ensure that your research is autistic-led,  or authentically co-designed.  Unless future research is guided by these principles,  it will continue to fall short of what autistic people need.  Your action will ensure autistic girls, women,  and gender diverse people can be understood  and supported to have a good life on their own terms.  

So, we wanted to end this webinar with a video  from a young autistic person who was involved in  developing the research priorities for autistic girls  and gender diverse people. 

Hi, my name's Violet and I am a 16 year old autistic girl.  People are often surprised when I say this,  but I promise it's true.  That's a metaphor that I've had a lot of autistic people use  to describe what it feels like to be autistic  in a mainly neurotypical allistic world.  "Autism can make you feel like you've been thrown into a game  where everyone is running around  and making seemingly arbitrary moves  and people are expecting you to know how to play,  but you never got a rule book".  Now, if that metaphor made absolutely no sense to you,  don't worry, it didn't to me the first time either.  Metaphors by and for autistic people  don't always go as planned,  but after some research and a consultation  with some of my finest neurotypical friends,  I have deduced that basically it means  that the world is very, very, very confusing.  But hopefully with the help of some nuance research,  with empathetic but still unbiased people,  unbiased people is one of my favourite paradoxes,  we can make this game a little less confusing.  

People often assume that autism looks a certain way,  and one of my biggest hopes for the future of autism studies  is that we acknowledge the many different ways  that autism can present.  In girls and gender diverse people,  autism often shows in a way completely unheard of,  to the general population, and until recently,  most of if not all experts as well.  When autism was first discovered,  it was discovered simultaneously by Leo Kanner  and Hans Aspergers.  I won't bore you with all the details of the history,  because once I start talking, I will not stop.  Psychology and autism is my special interest,  which is convenient.  Asperger basically insisted  that the young boys he studied  were smarter than a lot of the other mentally  disabled people at the time,  and that he could not find evidence  of this particular disorder in anyone except for boys.  And Kanner was convinced only four in 10,000 boys,  no girls, presented with what he called  true infantile autism.  In short, both were wrong,  and lots of these myths still exist today.  Though, through more detailed and welldocumented research,  I hope that these myths can be replaced  with genuine, provable facts,  that will ultimately benefit the huge autistic population.  

Throughout history, autistic people  have merely been the subjects of the studies  that decide how we'll be treated,  and I'm so excited that this is changing.  Being autistic teenager, at least in my experience,  means that you can feel incredibly frustrated  all of the time at how the world responds to your existence,  and it's hard to see any way forward.  I have hope that the more research being done  into how best to support me  and people like me will accelerate the movement  to not just the acceptance of neurodivergence,  but the celebration of it.  That's something that's very important to me  and many other people on the spectrum,  that we are not treated as burdens.  This isn't to say that autism doesn't come with challenges  and struggles, or that it will ever be rid of those  challenges and struggles.  I know it does.  I know it will.  Trust me I do.  I live in a world that isn't designed for me.  Some days waking up and getting out of bed  can feel like running a marathon.  But it's because of our autism in this world,  that we can have people run actual marathons  in record breaking times,  and people form deep connections to those around them.  

We are sparkling, unique  and wonderful variations in the human race,  that have given so much to this world,  from kindness and passion to the theory of relativity  and Olympic gold medal winners.  We are doctors and teachers and builders  and parents and librarians  and the old woman across the street  whose house is covered in flowers  because she spends all day, every day watering them  and taking care of them because it makes her happy.  This is what researchers need to know.  With the help of our loved ones,  disability aids and a more inclusive world,  we can flourish and live incredible happy lives.  

We just want to say thank you to Violet for creating and sharing that video with us.

So, thank you everyone for coming along today  to our launch.  It has been really clear from our research  that autistic girls, women and gender diverse people,  know exactly what they need,  not to only survive, but to thrive.  Women with disability often have removal of our agency,  decision making or input into their own lives  and how they need to be supported.  Often decisions are made about us,  or for us. And using collaborative research  to set priorities with us, instead of for us,  paves the way for validating autistic women,  girls, and gender diverse people,  to be able to take control of  where the future research is directed,  and subsequently how we are supported  based on what we need as a neurodivergent person,  who has insights and strengths,  not just using the medical model,  which often focuses on treating and fixing us,  instead of supporting us holistically,  and ensuring we can flourish in a world  that was not made for us.  

For more information,  you can go to the website that we will have live very soon,  and the website address is in the slide, on the screen.  Or you can also email us  at the email address in the slide as well.  Everybody that's here today,  even those that registered  and didn't quite make it into the webinar,  will receive an email with those links  and contact information.  We'll be working on a full report  about our research findings sometime in the near future.  We will be releasing this  and we'll also email a copy of this to everyone  who has attended the webinar today,  and that will also be available on the website  that we have on the screen once that's finalised.  

Once again, we would like to thank you all  for coming along today and we would like to sincerely  thank everyone who shared their stories and insights  as part of this research,  and some of you are in the room today.  We'd also like to thank other autistic advocates who keep  fighting for our rights as autistic women,  girls, and gender diverse people in Australia.  Thanks again for coming.  Have a great day.