The search to reveal why so many autistic girls go undiagnosed
Ainslie Robinson’s son enjoyed going to the playground but was happy playing alongside other children rather than joining in with them. As a baby, he would only go to sleep if Robinson carried him in a sling and danced around the house. He didn’t really make eye contact with people.
All of this made sense to Robinson: she had always been the same. “We like being with each other, so we sit next to each other doing separate activities. I hadn’t realised that was unusual at all,” she says.
Ainslie Robinson was diagnosed with autism when she was in her 30s.Credit: Wolter Peeters
It first occurred to Robinson that she might be autistic when she was 33 and her son was diagnosed.
“I was doing the assessment stuff with him and asking the psych, ‘Is this considered unusual in the typical population?’ Because this was me as well.”
Autism is a neurodevelopmental disability characterised by differences in social communication and repetitive patterns of behaviour.
Currently, four times more boys than girls receive an autism diagnosis. However, the growing number of women who – like Robinson – are being diagnosed as adults has led to experts questioning whether this is an accurate reflection of autism’s prevalence.
New research is trying to uncover whether girls differ from boys in the early childhood signs of autism, leading to delayed or missed diagnoses in girls.
The Aspect Research Centre for Autism Practice is surveying parents of autistic young people aged between 12 and 25, who were diagnosed at age 12 or older, to explore whether autism presents differently in boys and girls in the early childhood years.
“We are asking parents to recall their child’s early childhood and see if we can find some differences in the way girls present, behaviours we don’t look for at the moment,” says Dr Vicki Gibbs, head of research at the centre.
Dr Vicki Gibbs
“Early diagnosis is critical as delayed recognition can significantly affect the well-being and support received by autistic girls.”
Barbara and her daughter Blake are part of the study. She asked that their real names not be used to protect the privacy of her daughter.
She says Blake struggled with sleep, had a strong preference for certain foods, didn’t join in games at preschool and had sensory issues such as being sensitive to the seams on socks and not liking the feel of sand on her feet.
“But [Blake] was very communicative and very imaginative and very creative,” Barbara says.
“I only knew the stereotypical presentation of autism – boys who don’t make eye contact and line up trains, the Rain Man stereotype. With my stereotyped understanding of autism – there must be an intellectual or cognitive disability as well – I didn’t really think autism.”
Blake experienced social difficulties and sensory problems at high school, including being overwhelmed by the noise and constant changes of classrooms. “We ended up with serious school attendance issues,” Barbara says.
She was 13 when she was diagnosed with ADHD and autism.
“I just think it’s so important that parents talk about what it is to have a girl or gender diverse child with autism so that it becomes more easily identified and kids have the support they need to do well.”
A 2022 systematic review of studies that investigated early childhood signs of autism revealed no consistent gender differences in children under six.
However, one of the report’s authors – Associate Professor Josephine Barbaro from La Trobe University’s Olga Tennison Autism Research Centre – says these studies are unlikely to have picked up children who expressed their early characteristics of autism in an unfamiliar manner.
“Why is it that females are at a much greater likelihood of going unidentified than males?” asks the report published in the Review Journal of Autism and Developmental Disorders.
The review says further large-scale research is needed in this field. “Our understanding of the earliest childhood signs of autism in females who are diagnosed later in life is not well understood, partially because much of the existing research consists of young children who have already received a diagnosis.”
Barbaro developed an early screening tool to identify children on the autism spectrum.
The screening tool was used in a study of 13,511 Victorian children aged one to 3.5 years, which found one in 31 – 3.3 per cent – were autistic.
Barbaro says the male-to-female autism ratio was closer to three males to every female and in some ages as low as two to one. “I’ve really been racking my brain about why it is that so many girls and women are being missed,” she says.
Barbaro is now conducting research where parents of children diagnosed with autism after the age of eight are asked to send in video footage of their children when they were preschoolers.
This will allow for observation of the earliest-presented signs of autism in females compared to males while removing the possibility of parents’ memory errors.
Dr Josephine Barbaro developed an early screening tool to identify children on the autism spectrum.Credit: Pat Scala
“A lot of parents – me in particular – we whip out our phone and film our kids at any possible opportunity,” Barbaro says.
“We are asking parents to send in videos of their kids in everyday situations at the park, birthday parties, just engaging in play so that we can compare these kids with those that were diagnosed early and say: ‘Why were these children missed?’”
Robinson said it was a huge relief when she was diagnosed as autistic at age 35.
“I always had this understanding that I operated in a fundamentally different way to everyone else on this earth. It was clear for me, as far back as I can remember – which is probably to about kindy – always feeling like I was an alien dropped onto this planet that looked like everyone else, but was just different,” she says.
“Maybe like I didn’t get the handbook to life that everyone else got. And over the years, as I got to my 30s, I was starting to think that there was something fundamentally broken with me. So to know that I just had a differently wired brain was just an absolute relief.”
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