Why
Studies exploring the very early development of Autistic females have largely been comprised of those diagnosed at a young age. This limits our understanding of how autism may present in early childhood for those who are diagnosed later.
What does early development look like for females diagnosed with autism later in life? What is their pathway to diagnosis? What are the barriers and facilitators to early diagnosis?
The research
What we learnt
Pathway to diagnosis
Average age 7.21 years
Parents’ first concerns about their child’s development
Average age 8.38 years
First professional consultation
Average age 14.86 years
Autism diagnosis
Parent-reported development before age five
- Few parents reported social communication differences usually associated with autism prior to age five
- Sensory sensitivities (79%) and distress at changes in routine (81%) were common
Three themes were identified from the interviews with parents of Autistic females.
Theme 1: "Just different in her own way"
Parents recalled subtle social and sensory differences in their daughters but no significant concerns.
They described their children as developing normally, often highlighting:
- early speech
- strong communication
- imagination.
Daughters were described as:
- bright
- friendly
- independent
- quirky
- creative
- spirited.
“When I look back there were no textbook kind of concerns I’d have to say. There were a few medical related challenges, but not developmental, none. Everything was kind of unremarkable.”
Theme 2: "It all started to unravel when she was a teenager"
The transition from primary school to high school and the changes associated with puberty were associated with the emergence of:
- academic problems
- social problems
- emotional problems.
For many, this was the first time that they became concerned about their child’s development.
“And it was when she’s able to explain the anxiety was around not understanding the social stuff as it got more complicated. The exhaustion from having to mask when she went to high school she was very overwhelmed by like what to bring each day and she couldn’t find a way around the school.”
Theme 3: "Fallen under the radar"
Parents’ reflected:
- how their daughters’ abilities and behaviours did not fit the stereotypical profile of autism, which delayed recognition and diagnosis by educators and health professionals
- that their children’s strengths and temperament may have also delay recognition.
“Because they were bright or intelligent, I suppose there was a whole range of things that they were able to work out quickly in terms of how to probably fit in. And I suspect there might have been some adaptation going on in terms of their attempts to cope and navigate.”
Media
Sydney Morning Herald/The Age: The search to reveal why so many Autistic girls go undiagnosed (23 June 2024)
Making a difference
Research findings from this study will contribute to an increased understanding of the early developmental profile and pathway to diagnosis for females diagnosed with autism later in life:
- Some Autistic females may exhibit few of the social communication traits measured in screening tools during the early childhood period.
- Clinicians conducting assessments of older children need to be aware that social communication differences may not be overt or problematic until later in life when social demands become more complex.
- Certain behaviours such as sensory sensitivities and preference for sameness may be more predictive of later autism diagnoses than overt social differences.
- Autism should be a consideration when behavioural, social or mental health challenges emerge around the transition to adolescence in the absence of other explanations.
Research team
Dr Vicki Gibbs, Aspect Research Centre for Autism Practice (ARCAP)
Dr Chris Edwards, ARCAP
Dr Abbey Love, ARCAP
Dr Ru Ying Cai, ARCAP
Started
2024
Ends
2025
Funding
Aspect