Paving the way for progress with autism

It is estimated that approximately one in 70 people have autism, yet the wider ramifications of this condition – the full extent of how it affects a person and what it conceals – remain difficult for most people to clearly understand.

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.