When a family friend’s son was diagnosed with autism Professor Andrew Whitehouse offered them respite but it left him a changed man.
“It changed my life,” he says. “I saw the family’s realisation that their child was developing differently to other kids, the difficulty they had in obtaining a diagnosis, their endless fight to receive the proper services, and the enduring love they had for their child.”
Although he began his working life as a clinical speech pathologist, helping children with autism improve their communication and social skills, Professor Whitehouse believes he got more out of the work than the families did and realised it was time for a career change. With huge empathy for the families he was seeing in his clinic, he still desperately wanted to help. “Life after a diagnosis of autism can be extremely tough. The emotional, physical and financial toll is difficult to fathom unless you’ve been through it. I was working with extraordinary children, from extraordinary families, in extraordinary circumstances. I wanted to help – and that’s where research came in,” he explains.
His pursuit of autism research has seen Professor Whitehouse as an Oxford University Junior Research Fellow, a published expert attracting interest from the world’s most respected media outlets, and now a head researcher working alongside other passionate professionals at what promises to be a revolution in the world of autism - The Cooperative Research Centre for Living with Autism Spectrum Disorders (Autism CRC).
With Autism Spectrum Disorder (ASD) among the most severe, prevalent and heritable of all neurodevelopmental disorders, affecting at least 1 in 100 Australian children, the Autism CRC is the world’s first national, cooperative research effort focused on autism across the lifespan.
“Never before has there been such a collaboration of researchers and end-users tackling autism research in Australia, or such a coordinated effort and in key areas that people with autism and their families have identified as most critical,” says Autism CRC’s communications manager, Tess Cosgrove.
Tess explains that the centre’s goal is to improve outcomes for people with autism through three core research programs that link throughout the lifespan, including diagnosis, education and adulthood.
Autism CRC is going to provide a comprehensive road map using biological information, neuroscience and genetics, Tess says. “Combined with the behavioural information already used to diagnose autism, we aim to accurately diagnose autism under two years of age - for the first time. This is a revolution in the way in which we diagnose autism and it is tremendously exciting.”
One of the ways this will be done is by creating Australia’s first and largest autism biobank, which will contain detailed biological information collected from over 1200 families where a family member has autism. “This will allow for the first time, on an unprecedented scale, a genetic discovery that we’ve never seen before in Australia,” Tess says.
Associate Professor Charles Claudianos from the Queensland Brain Institute has just led the study for the first piece of this puzzle to capture what is known about the genetics of autism, examining more than 4000 genes of each child and their parents.
“Over 1000 genes have been linked to autism,” says Associate Professor Claudianos, “but importantly, there are many different combinations of these genes that can actually lead to the disorder. We found that no two individuals with autism had the same causal genetic signatures.”
With current diagnosis of autism based solely on behavioural profiling of the child, teenager or adult, the process take many months, involves many specialists and is expensive, Tess explains. “This process is causing delays in diagnosis and, in many cases, there is a misdiagnosis and the wrong, or ineffective support is provided.”
Professor Whitehouse says autism is an area that is too often shrouded in mystery, with hearsay, rumour and speculation routinely spoken about and posted on the internet as the truth, making choices extremely difficult for families who need factual guidance more than anything. “Science is needed to cut through all the murkiness that seems to envelop autism,” he explains. “I came to realise that research truly can change the world, and I wanted to be part of it.”
In addition to diagnostic advancements, Autism CRC will also revolutionise the way the complex learning needs and behaviours of students with autism are managed in the classroom. “All CRC projects are grounded within a school setting with a key research focus on how to create autism-friendly education programs and better equip teachers,” Tess says.
This will be done by researching educational environments, looking at programs that optimise students’ social, behavioural and academic success, as well as how classroom technologies, structure, and acoustics can improve educational outcomes.
“With the prevalence of autism growing, teachers are more likely than ever before to have a child with ASD in their classrooms,” Tess says. “Educators face the challenge of meeting the complex and varied needs of children with autism while maintaining an appropriate learning environment for all students.”
Also looking beyond schooling, the CRC is producing the first Australian multisite, multistate, longitudinal, coordinated studies into appropriate services for adults with autism, Tess says. “Only 1% of all research into autism is focused on post school outcomes but with 2,500 to 3,000 school leavers in Australia with autism, it is an area where much can be done.”
Tess explains that there has never been such a multi-faceted, collaborative research effort focused on improving the physical and mental wellbeing of adults with autism. “Developing national protocols will give clear guidance to people with autism, their families and the health professionals who assist them, removing uncertainty in the difficult transition from school.”
With the wheels set in motion, the future looks promising for autism research, something that Professor Whitehouse is clearly excited to be a part of. “I just felt that dedicating my working life to helping these wonderful, inspiring families would be a life well spent.”