It's better late than never, but Heather Cox wishes she had greater access to the supports she needed earlier in her life.
The Adelaide woman was diagnosed as autistic at the age of 38.
That helped Ms Cox, who is now 40, access sessions with a psychologist and occupational therapist, which have improved her quality of life.
But the late diagnosis meant she spent several decades fending for herself and playing catch up.
"There is frustration in knowing that if I had an earlier diagnosis, I would have had access to these supports [earlier]," she said.
"Over the years I've created unhealthy ways of dealing with things in my everyday life just to get by, and now knowing I'm autistic, I'm restructuring that and think there's a greater need for these supports because I was diagnosed later."
Two of Ms Cox's three children are autistic — a son and daughter both diagnosed early, who she said show very different traits.
"My son was always lining things up, creating patterns that had a very specific logic to them, but my daughter didn't have that," she said.
"[The traits for my daughter] were more subtle things not immediately apparent to people."
Actually autistic, but being missed
An Australian-first study from Flinders University has found women and girls are harder to diagnose with autism than boys, because diagnostic tools are skewed towards detecting autistic boys and men.
The researchers found autistic girls and women often mask their traits and are not being diagnosed until later in life, if at all, meaning they miss out on important supports.
"The tools we currently use are not well-equipped to diagnose autism in females and we need to go back to the drawing board to work out how girls with autism present and how different they might be from ... boys," Professor Robyn Young said.
"If we've got a stereotypical view of what autism looks like and a female comes in with really good social scripts, good eye contact, engaged in pretend play, their obsessive interest is Harry Styles, they might not appear to be so different from any other female."
The researchers looked at the profiles of almost 800 children and the commonly used tools to detect autism.
They found not only do diagnostic tools need to be updated — or even, created — to better detect autistic females, but that clinicians themselves need to change how they think about autism.
"Clinicians are not really well-primed to think about autism when they're presented with a female," Professor Young said.
"Boys will often externalise their behaviours and become more obvious in the classroom, acting out and having meltdowns.
"Girls are more inclined to camouflage ... and as a result they don't come to the attention of professionals until much later."
Diagnostic disparities are reflected in the number of autistic women and girls on the National Disability Insurance Scheme (NDIS).
Of the 35 per cent of current NDIS participants who are autistic, 70 per cent are male, according to the most recent quarterly report.
Professor Young said substantial changes were needed to ensure all autistic people got the support they needed early.
The foundation of any change would be greater education for clinicians, she said.
"We need to make people more confident about how autism presents in women, so they look for these clues when the women come in and they don't sort of go down the path of looking at anxiety, eating disorders and so forth, but are primed to consider the diagnosis of autism."
Finding support, 'without the mask'
The research findings ring true for autistic woman Katie Koullas, who was diagnosed as an adult.
"It's good to see research catching up to what we've been saying for so many years now through our lived experience and our stories," she said.
"It's absolutely true that autistic girls and women and gender-diverse people, we often internalise — it's because of the way we've been so socialised, so we're not able to access the supports we need."
Ms Koullas is the CEO of advocacy group Yellow Ladybugs, which she set up to provide community and connection to autistic girls like her daughter, who was having trouble making friends and being excluded from events.
She has written a book on supporting autistic girls and gender-diverse youth, which she hopes will help them, and the wider community, understand the condition outside how it presents in males.
Research like the Flinders University study can also help with that, she said, by making sure autistic people of all genders can be diagnosed early and access the supports they need.
"We need to remove the barriers around accessing diagnoses so women and girls can start understanding their neurology and finding their supports without the mask."
Heather Cox said getting an early diagnosis for her two autistic kids was vital.
"Having that sense as a kid of not fitting in was not something I wanted my children to grow up with, you don't feel like you belong," she said.
"I want them to know from the outset their minds work a bit differently and there is nothing wrong with that".
