One in 70 Australians have autism; chances are that includes someone in your family, your class, your workplace or sporting club. It may even be you. And while popular television programs like the ABC’s Love on the Spectrum have helped to correct some common misconceptions, there is still much to be learned.
Advancing our understanding of autism is not just important for those individuals and their families, but also for society at large, according to Professor Vicki Bitsika, a neuroscientist and researcher from the University of New England.
“Autistic people have a unique way of thinking and, when it comes to complex global problems, they are likely the ones who will save the world,” says Prof. Bitsika, who has specialised in autism in clinical practice for 35 years and leads a UNE Brain Behaviour Research Group (BBRG) study of autism.
“It’s important to recognise the unique abilities and talents of autistic people so we can better support them. In turn, they can then contribute to the wellbeing of those around them.
“Because each autistic individual presents in schools and employment settings differently, we need more research on understanding the autistic brain, identifying autism subgroups, and mapping how autism symptoms evolve over the person’s lifespan. Findings from this type of research will go a long way in helping us to develop personalised support. That’s what the BBRG is dedicated to.”
Here’s what we do know. Autism is highly variable, hence the search for clearly defined subgroups to drive effective treatment. Generally, autism is more obvious in males because females appear more motivated to mask symptoms they believe will cause them to stand out or attract negative attention from their peers. While every person’s experience of autism will be unique, environmental factors (like disturbing sensory stimuli) have an adverse effect, and many social situations will be challenging.
We also know that women are the primary carers of children with autism. And they are much more anxious and depressed than mothers of typically developing children, largely due to their autistic child’s behaviour being misinterpreted by others and the greater need to advocate for their child’s needs.
“Our understanding of autism has come along in leaps and bounds – we are now talking about variations and subgroups, understanding coping mechanisms like camouflage and withdrawal, and becoming interested in the neurobiological mechanisms underpinning this condition,” Prof. Bitsika says.
Beyond examining autism per se, a major focus of the BBRG has been to better understand other conditions that often co-exist with it and exacerbate the severity of autism symptoms. Research has also focused on anxiety and depression from the perspectives of neurobiological contributors and behavioural outcomes.
“We continue to diagnose autism in relation to behavioural symptoms associated with difficulties in social communication and interaction, and the presence of restricted and repetitive behaviour patterns such as a high need for routine, developing obsessive interests, and sensitivity to loud noises/bright lights,” Prof. Bitsika says. “This combination of symptoms makes it difficult for the autistic person to avoid becoming overwhelmed and to function well in places others can manage easily.
“Their rates of stress, anxiety and depression are often high, which poses challenges for making an accurate diagnosis, planning effective treatment and building supportive learning environments.”
As part of a research collaboration with a number of Gold Coast childcare/preschool centres, the BBRG has collected data from more than 100 autistic children and their families to inform an evidence-based, autism-specific program. By intervening early in life, the team believes autistic children have the best chance of establishing meaningful connections with their families, educators and peers.
The group’s program, which concentrates on building children’s learning, communication and social abilities, is now being used in five preschool centres to prepare preschoolers with autism for their transition to primary school.
“We need to start early to achieve positive outcomes,” Prof. Bitsika says. “During 1-2 years in our program, children have demonstrated they can build skills in communication, self-care and daily living, in play and in managing their emotions and difficulties in a more effective manner. As a child’s skills improve, so does their parents’ confidence.
“We want to see society move away from a deficit model of autism; to put the child’s label to the side and focus on maximising their assets. Our program looks at how children can develop a sense of belonging and achievement – it is child-specific and connection-driven. The goal is to provide consistency throughout their schooling and even into employment, so they can progress successfully.”
Current school inclusion policies and practices, Prof. Bitsika says, are sadly lacking in providing educators with clear guidance on what inclusion looks like for children with autism. More intense assessments of a person’s assets and capabilities is an important piece in this puzzle. Along with longitudinal studies that track children from preschool into high school, when many disengage with formal education.
“All our clinical research aims to build an evidential basis for making the lives of autistic children and their families more rewarding,” she says. “We want individuals to succeed, we want their families to stay intact and healthy, and for their educators to understand them and not see them as some unsolvable problem. Most selfishly, we want to keep them performing to the best of their ability because these are minds that will make a difference to society.”
And, in the process, we must consider the mental health and wellbeing of their carers, too.
