Ensuring the thoughts and preferences of autistic people are at the heart of every policy and research decision is a central tenet at La Trobe University’s Olga Tennyson Autism Research Centre. The first Australian research centre dedicated to autism, OTARC opened in 2008, and there has always been an unwavering focus on establishing what the community wants and what the community needs, says lead autism researcher Professor Dawn Adams.
“Part of the challenge and the joy of autism research is conducting projects that are meaningful for as many autistic people as possible, and that can have applicability for as many autistic people as possible,” she says, adding that it is important for researchers to note when projects do not suit the entire range of autistic people and to create the next project to fill the gap.
More than half of the staff at OTARC are neurodivergent and many are autistic, Professor Adams says, adding that the centre tries to ensure that every project is overseen by an advisory group of autistic people.
As diagnosis improves, increasing numbers of Australians are found to be on the autism spectrum.
Nationwide, about one in three children are now diagnosed as autistic, Adams says, partly because of improved methods of identifying autism and partly because of changes in diagnostic criteria first implemented in 2013.
The earliest signs of autism might include differences in the ways children approach play, the way they manage social interactions, and their preference for routine, Professor Adams says.
Many children with autism develop ways to effectively “mask” their condition, she adds, and the characteristics of autism may not be immediately visible to the inexperienced.
Lead autism researcher Professor Dawn Adams.
“We tend to find that autistic girls especially fly under the radar for a long time because they learn how to mimic being non-autistic, which may not be noticed until secondary school or adulthood,” Adams says, adding that as people mature their lives and social interactions become more complicated and school becomes more demanding: hiding autism can then become difficult,” Professor Adams says. “As we find out more and more about autism, we are realising that we have to do better research and create broader solutions to meet the needs of more autistic people, and that’s why, as OTARC has grown to meet this challenge, there are now more than 50 people in the centre.”
OTARC research informs the creation of accessible tools and services for autistic Australians, including the Victorian Early Assessment Clinic and the free ASDetect app.
This app helps family members work through questions about their child and explore whether he or she might have autism characteristics and whether it is worth getting a formal assessment.
The Victorian Early Assessment Clinic, the world’s first clinic of its type, uses assessments to identify autism or other neurodevelopmental disorders such as ADHD, dyslexia and dyspraxia in children under three.
“We’re hoping that as we get better at identifying autistic children earlier, we’re able to help them develop their sense of identity as an autistic person and feel comfortable with that, and then we’ll see improvements in mental health outcomes as children grow up,” Professor Adams says.
“We know that lots of people don’t recognise they’re autistic until they’re adults. Many people will tell you, if they’d found out earlier, their life would have been different.”