It was just a few years ago when two schoolgirls on the spectrum missed another invitation to a party.
Greek Australian Katie Koullas decided enough was enough.
“I was thinking this is just ridiculous. I wanted to give them a chance to connect with others. They were missing that at school,” she said. In 2015 while juggling work and family Katie Koullas launched Australia’s first charity for girls on the spectrum, Yellow Ladybugs.
“I realised that there were so many kids, girls, not getting invited to parties and it really was about trying to give an opportunity for all girls to be included,” Ms Koullas said.
Ms Koullas said social programs for those with autism are largely aimed at boys causing girls to sometimes feel like they are alone.
“Yellow Ladybugs is a place for girls on the spectrum to connect and meet and find their tribe,” she said.
“It’s a wonderful way for people to find out more information about how diverse the spectrum can be because there are a lot of misconceptions out there around autism in particular autistic girls and women.”
Throughout the Inquiry into people with autism spectrum disorder (ASD), the committee heard that girls and women face particular obstacles in getting assessed and diagnosed for ASD, obtaining funding and appropriate treatments.There is a lack of understanding of the presentation of ASD in girls, as many studies and diagnostic criteria are based on how males present.
The committee received research from Yale University’s Developmental Disabilities Clinic indicating that ASD interventionists and researchers have begun to appreciate that the development of socialisation and communication processes for girls and women is quite different from that of boys and men.
“Unfortunately, the research and intervention implications of these differences have not been systematically addressed for girls and women with ASDs,” the researchers said.
“All the studies contained males and so the set of criteria to get the diagnosis was based on how males presented and a lot of females present differently,” Ms Koullas said.
Historically ASD has been considered a male condition and gender biases in diagnosis, treatment and service delivery are also evident.
Many women and girls are misdiagnosed with a range of other conditions.
The committee heard when it comes to diagnosis, many girls ‘fly under the radar’.
“I ran an event last week where we had a forum on misdiagnosis and a woman came up to me after the event saying that I had saved her life,” Ms Koullas said.
“She had just left a psychiatric ward but she knew she was autistic and with our resources was able to find someone who diagnosed her correctly.”
Yellow Ladybugs works with the Department of Education to develop resources for teachers to better understand girls on the spectrum with autistic women who reflected back on their experiences at school and what would have helped them.
They also work to ensure there are good pathways for autistic girls when they want to enter the workforce as Ms Koullas said there is a lack of access to interviews that are inclusive or open to people with diverse needs.
Monthly events where girls can get together, have fun like-minded people are also a huge part of being part of Yellow Ladybugs.
“I think we can see there’s so much demand. When we launch an event it books out in under a day. There are waiting lists a mile long because there’s not anything else out there like what we’re trying to do,” Ms Koullas said.
She said setting up something from scratch was difficult but her passion outweighed the hurdles.
“As soon as I saw the first event with parents crying, seeing their kids connecting I knew that I had found my calling and I know what a difference and impact we were making for the community. It’s the fuel that’s kept me going,” Ms Koullas said.
“We’re trying to add to the conversation, we’re not trying to make money off our families and so people really value that.
“Being on the spectrum isn’t a barrier,” Ms Koullas said.
“That’s what we mean about the general misconceptions; there are so many doctors, surgeons, politicians, lawyers, anyone and everyone, you might be sitting next to somebody on the train who is on the spectrum.
“It’s just a different way of seeing the world. And we need to understand that more.”