This is why Professor Robyn Young pushes hard for improvements to early detection methods for autism, and why her research strives to promote broader discussions.
“We need to understand all the needs of people with autism, yet many of their issues are masked or not visible to the rest of us,” says Professor Young. “The need for improved information is immense.
“We also need to be more unified in our approach to screening for autism. We need to understand how it presents and how presentation may vary with development of the condition. If we can identify behaviours early, and understand the impact these behaviours have on development of the condition, then we can target support more efficiently.”
Professor Young’s research has drawn inspiration from her clinical work as a clinical psychologist, which is performed in conjunction with her research and teaching at Flinders University. “I’ve seen the need for early diagnosis and early detection in people who come to me. I’m very concerned that undiagnosed Autism Spectrum Disorder has underlying and associated hidden health issues.”
Each layer of research explored by Professor Young reveals added complexity, with many subtleties that people would not automatically associate with autism, yet which have a significant effect – such as a connection to eating disorders in young women.
“People with autism who have these problems show resistance to typical treatments, which shows that the autistic population is very vulnerable to receiving incomplete health care,” says Professor Young. “When we consider the behavioural characteristics of autism, which can include being selective about food and textures, food refusal or being particular with the type or colour of the utensils used, it is plausible to suggest that these behaviours may eventually lead to an eating disorder.”
Professor Young has been instrumental in devising practical solutions. The Autism Detection in Early Childhood tool she created proved to be very valuable during COVID-19, when it was trialled as an online tool by clinicians in other countries who couldn’t access child patients – and its success has Professor Young confident it will be accepted more widely across rural and remote communities in Australia.
She also supports people with autism who find themselves inside the criminal justice system, and examines the ways they are treated. She has been involved in more than 100 cases, often explaining that the accused may not have understood the wrongfulness of their behaviour, whether they were unable to control their conduct, or explaining to a jury how the person may present in unexpected ways and that this doesn’t equate to deception.
“It’s highly problematic. If you have autism, you are seven times more likely to interact with the criminal judicial system and more likely to be arrested if you have an encounter with a police officer than people who do not have autism – so we want clarity. This doesn’t mean providing an excuse for criminal behaviour. People in the autism community don’t want to weaponise the diagnosis so that people can hide behind it to excuse any deliberate wrongdoing – but it is necessary to identify people who get themselves into problematic situations due to their lack of understanding.”
As examples, Professor Young points to such incidents as people with autism who are sent childhood exploitation material while they are in a chat room, or a boy with autism who is an obsessive anime fan who easily accessed explicit Japanese material that is illegal in Australia.
“There are many people who are preying on vulnerable people, and the autistic community is very much at risk of finding themselves tangled in compromising legal situations.”
She is also concerned that existing autism tests are built around identifying males – and that young females present differently. It means that girls with autism tend to be diagnosed later than boys, largely because they can present with different characteristics than those classically related to autism – and they are very good at camouflaging problems and mimicking to ensure they fit in. It results in many females with autism issues remaining hidden within the health system, and not receiving the diagnosis and support they need.
“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.”
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