Autism in girls often unreported and missed or misdiagnosed, support group says
By natashapsychology, Apr 2 2016 12:06AM
By social affairs correspondent Norman Hermant
Girls living with autism are often misdiagnosed, misunderstood or missed completely, says a group formed to support girls with Autism Spectrum Disorder (ASD).
Officially, boys outnumber girls with ASD four to one, but experts say that figure is misleading.
"[Autism] is much tougher to spot in the girls," said Danuta Bulhak-Paterson, a clinical psychologist who wrote a book about girls living with autism, Aspie Girl.
"They have a very different presentation to boys on the spectrum."
Boys living with ASD will often be quickly diagnosed based on telltale signs, such as difficulty socialising and communicating, and repetitive and inflexible behaviour.
PHOTO: Danuta Bulhak-Paterson wrote about young girls living with Autism Spectrum Disorder in her book Aspie Girl. (ABC News: Norman Hermant)
Girls are often able to mask these symptoms.
"They often give good eye contact," said Ms Bulhak-Paterson.
"They're far better at imitating and often observe before they have a go. So they're real chameleons."
Katie Koullas knows all too well how hard it can be for girls to be properly diagnosed. Both her daughters, eight-year-old Kikki and six-year-old Mia, have now been diagnosed as having ASD level one — also referred to as Asperger's syndrome.
Girls with ASD can be intensely shy. For Kikki, it made school tough going.
"Yeah, it was very hard," Kikki said. "It took me a year to make one friend."
Ms Koullas struggled for years to have Mia diagnosed.
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"We were looking for three years for answers to explain the possible concerns we were having," she said.
"I went to probably 10 different doctors over the two or three years. Not one mentioned the word autism or Asperger's."
Ms Koullas is the founder of Yellow Ladybugs, a group that supports girls with ASD.
On World Autism Awareness Day, April 2, they have planned events to help raise awareness of girls living with autism and the fact that ASD is often initially missed in girls.
"It's so important because girls are getting diagnosed later in age than boys," she said.
"So they miss out on the critical early intervention funding."
Professionals said 'she's just shy'
Natalie Galvin also knows how hard it can be to identify autism in girls. Her six-year-old son Nathan was diagnosed with ASD relatively quickly. But that was not the case for her eight-year-old daughter Emma.
PHOTO: Natalie Galvin with her daughter Emma and son Nathan, who have both been diagnosed with autism. (ABC News: Norman Hermant)
"With Emma, we noticed from a young age the symptoms were there, just not as intense," she said.
"Every time we approached a professional to talk about it, it was always dismissed as she's just shy. Or she'll be fine."
Emma had repetitive behaviours and an overwhelming fear of people.
She was eventually diagnosed with ASD.
"It was just such a sense of relief," said Ms Galvin.
"To have actually finally got that diagnosis and understand what's going on now."
'It was easy to work out life from there'
The relief of a proper diagnosis is something Chloe Hayden can relate to. The 18-year-old lives with ASD level one.
For her, there were years of social agony at school until she was diagnosed at age 13.
PHOTO: Chloe Hayden wants young people to know that autism is not a "label that sticks itself onto you". (ABC News: Norman Hermant)
"Everything just fell into place. And it was so much easier to be able to figure everything out after that," she said.
"It was easy to just kind of work life out from there."
Ms Hayden is now an ambassador for Yellow Ladybugs, helping to support girls and young women who live with autism.
She runs a small performance business based on her passion for fairy tales, and also works as an actress.
Her message: Autism Spectrum Disorder does not define her.
"Everybody's different, and everybody has their own little quirks and traits," she said.
"I think it's really important that kids can see that autism isn't what makes them them. It's not a label which sticks itself onto you. It's just another part."