Autism affects approximately one in every 100 Australians and costs around $10 billion each year. But, according to Chancellor’s Postdoctoral Research Fellow Rachel Grove, there’s still so much we don’t know, particularly when it comes to females.
Though autism affects both genders, Rachel says, “Autism has been diagnosed at a rate of about four males to one female, so it has historically been understood through that male lens. Current research is showing that there might be close to as many autistic females as males, but we just don't know enough about them.”
Rachel’s interest in autism was sparked 10 years ago when she was studying her undergraduate degree. “I started working with families with disabilities, particularly families with autistic children, and it just sort of grew from there,” she says.
For the last four years, through her clinical practice, Rachel has also spent a great deal of time working with autistic adults, mainly autistic women.
Autism is characterised by social and communication difficulties, alongside repetitive behaviours, sensory sensitivities and special interests. But, Rachel says, there are many “subtle differences” between autistic men and women. For example, some women might show fewer social communication challenges when compared to men.
“It might be that autistic women have developed skills for coping with some of those difficulties,” says Rachel. “These strengths may make it challenging for autistic women to be identified.”
Rachel also says the majority of the instruments used to measure, assess and diagnose autism have been created using male samples. That, she says, can leave autistic females further disadvantaged, and going misdiagnosed or undiagnosed into adulthood.
It’s why, through her research, Rachel hopes to establish better methods for assessment and diagnosis that account for the differences between autistic men and women. Using large existing data sets and participatory research with autistic individuals, her research will try to understand some of the unique strengths and challenges experienced by autistic females, particularly in special interests, repetitive behaviours and sensory challenges.
Importantly, her research will evaluate how these differences might be related to outcomes such as mental health and wellbeing. It’s hoped that this will lead to earlier and more accurate diagnosis for autistic girls and women. Rachel says, “Particularly for autistic adults, a diagnosis is really important, as it forms part of their identity.
“I've always admired all of the families and individuals that I've worked with for their strength and resilience.
“I think having a daughter makes me feel more passionate about wanting to make some change in society. I want to make sure she can grow up in a world where people are equitable.”