Have you ever felt like the people around you have access to a secret rulebook for life – but your copy got lost in the mail? 

You work harder than everyone around you just to keep up (or at least look like you’re keeping up). You’re exhausted and overwhelmed, but you don’t quite understand why. 

Then, sometime in your twenties, thirties, or even later, you get an answer: you're autistic.

It's a familiar story for an increasing number of Australian women, with rising autism diagnosis rates.

Today, we’ll explore what’s behind this increase, and how attitudes have shifted.

And just a quick note, this newsletter was made possible with our friends at The University of Sydney.

When autism research began in the 1940s, scholars studied boys almost exclusively. One researcher stated he could find no evidence of the condition in girls at all.

For decades, autism was understood, diagnosed and treated through the lens of how it looked in boys and men, resulting in generations of autistic girls and women being overlooked, dismissed, or misdiagnosed.

Autism is characterised by differences in communication styles and sensory processing. It is diagnosed through developmental assessments and behavioural observations.

According to 2022 census data, more than 290,000 Australians have been diagnosed with autism – up 42% since 2018.

Autistic Australians are nearly six times more likely to be unemployed than Australians without a disability, and the majority of young autistic Australians experience difficulties at school.

A key factor in the misdiagnosis of women and girls is “masking” – camouflaging their autistic traits to fit in. Without even realising it, many autistic girls learn to mimic the social behaviours they see in peers from a young age for fear of being bullied or perceived as different.

By the time an undiagnosed autistic woman reaches adulthood, she will have expended enormous amounts of energy fighting to function in a world designed for neurotypical people.

Many women mask so instinctively they barely notice they're doing it, but this takes a significant toll on wellbeing.

One Australian-led study found autistic women are 83% more likely to die by suicide than non-autistic women, and more than 75% of autistic young people have an additional mental health condition.

Research Fellow at the University of Sydney and lived-experience advocate Dr Rachel Grove led a two-year project to develop the first autistic-led national research agenda for autistic women, girls and gender diverse people in Australia.

Dr Grove said “it was critical to ensure that autistic people undertook the research,” with the study being led by a group of Autistic women and gender diverse people. More than 400 autistic people contributed to the research. They were asked what research would benefit their lives.

The findings were distilled into six research priorities for autistic young people and eight for adults – a roadmap built entirely by and for the people it aims to serve.

A top priority for young people was better understanding and support at school. Autistic girls frequently reported that mainstream schools weren't designed with their needs in mind, and that teachers lacked knowledge about how autism presents in girls.

“The fact is that I can be in a school system where I don't receive the support I need because I'm not visibly struggling,” one young person told the researchers.

“I think there needs to be more awareness spread of how autism looks and that it's not a little mould that someone can fit into.”

Mental health support and understanding how to support gender diverse autistic young people were also key concerns.

“There's a pattern at least of autistic people, girls in particular, crashing in their early teens… because of having to deal with increased social pressures,” one research participant said.

For adults, understanding and supporting experiences of trauma, abuse and sexual violence was a top concern – an urgent issue given how frequently autistic women experience violence. Barriers in healthcare were another major theme, with many describing years of being dismissed by the system. This is critical, as one autistic adult told the researchers “being stuck in the mental health system for 20 odd years breaks you”.

Through its lived-experience focus, the research also captured the strengths of autistic girls, women and gender diverse people.

A 16-year-old autistic young person contributed this description of autism to the project: “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.”

One adult said: “I think these girls, these strengths and these brains need to be embraced and utilised… I wish that I had those tools, and that I was allowed to thrive and to be who I am when I was that young.”

Last year, the Federal Government announced a seven-year plan to improve the lives of autistic Australians, with aims to improve early diagnosis, expand mental health support, and build awareness of neurodiversity.

For example, the Department of Health, Disability and Ageing will produce a guide to ensure public spaces are accessible to autistic people, taking lighting, noise, and design into account.

The rise in female autism diagnoses doesn’t mean more people are suddenly being born autistic. It means more women and girls are finally being seen, getting answers and support, and understanding themselves.

But a diagnosis alone is not enough if schools, workplaces, and health professionals still don’t understand what autistic girls, women and gender diverse people need.

For the many Australian women who spent years not knowing why the world felt so hard to navigate, the conversation is not over yet.

As Dr Rachel Grove says, “we need to stop focusing on why more autistic women and gender diverse people are being diagnosed and focus on what they need to flourish and live a life they value and deserve”.

From sustainability to chronic disease, University of Sydney researchers are tackling the world's biggest challenges and creating solutions.

Recently ranked 6th in the world for social impact, their work is influencing policy, shaping global treaties and changing lives. This is what they call Leadership for Good.

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