“Under-detection of autism in girls may be partly driven by differences in the way they typically present compared to boys. In addition, clinicians have a restricted conceptualisation of how autism can be expressed, often using tools designed around a male presentation,” she explains. “Tools currently being used to measure Autism Spectrum Disorder traits are based on research involving male participants, meaning that they are not sensitive to how girls present. Therefore, we need to better understand the unique challenges of girls so that we can improve our diagnostic assessment processes.” This is important because there is a strong relationship between delays in diagnosing, camouflaging and poor mental health.
Still, Professor Young reminds that improving diagnosis doesn’t simplify the problems that people with autism have to wrestle with. Although the diagnostic criteria require autism to have a significant impact on quality of life, there are many for whom the impact is minimal and even positive.
Dr Young's research focuses on those for whom the condition has not proved to be so positive. The complexity of autism’s negative effects on people sees Professor Young sent emails about issues on a weekly basis. “It’s a delicate area because of community stigmas about the condition and the people it affects,” she says. “If we can educate more people on autism, to explain the complexity of how it affects people, we will find that people with autism are treated less harshly.”
To ensure that the needs of people with autism are being met, all research has input from those with lived experiences. She adds, "It is important that our research is driven by the expressed needs of the autism community and hence all studies are co-designed.
In her role on the board of Australian Advisory Board on Autism, Professor Young has been a strident advocate for broader public education about autism. She is also leading research pathways to examine why people with autism are more vulnerable to homelessness, and being misunderstood in the hospital system because they can’t properly articulate their pain threshold, which means they are not being treated properly.
“Autism is a serious condition that has a massive impact on people’s lives, and we want to minimise the impact,” says Professor Young. “We need autistic people in our community. They can do great things. Neurodiversity can bring skills that other people can’t even begin to imagine. We have to work together to ensure their experiences are more positive.”