When I stepped off the plane in Sydney from London nearly four years ago, I had a tooth that needed root canal treatment, a cousin’s wedding to attend, no job and no money. I took some painkillers for the tooth, went to the wedding, moved to Brisbane, borrowed money off my sister for the dentist and applied for jobs. Two weeks later I had an interview for the position of research assistant at a charity for people with autism, with a softly-spoken woman whom I had to strain to hear. I received a call from HR a couple of days later, on a gorgeous sunlit day when I was walking back from Stones Corner. I was at a crossroad, and had to stand still to concentrate to hear. She was offering me the job. I wasn’t even sure if I would take it because it was only two days of work and I needed one more to survive while I wrote, but I’d liked the place, and I figured I would be using my brain and doing something good for other people, so I said yes. I hardly knew how transformative that word would become.
One of the things my boss (who fortunately speaks much more loudly to me now) mentioned in the interview was that we would be applying for a major grant, a Cooperative Research Centre, for autism. At the time, I don’t think either of us had any idea of the amount of work this was going to involve, and it was probably just as well we were innocent. We went to some information sessions, one of which was at a venue overlooking the Allan Border cricket field. This place is also used for wedding receptions, and my boss mentioned that at another function she’d attended there had been a couple. They had finished checking out the place and had moved into the middle of the cricket field, whereupon they became very interactive with one another, much to the amusement of the conference participants inside.
Back at the office, things were slightly less carefree. We had a meeting with the Chair and CEO. ‘Do you think this thing is possible?’ the CEO asked of the Chair. ‘Yes,’ he replied emphatically, and with his propulsion, we began making connections with universities, both local and interstate. The University of Queensland came on board, and together we arranged a scoping meeting for researchers in autism, to see who might be interested. One of the presenters was a mother of a child spoke who so movingly of trying to get a diagnosis for her son — a process that had taken her years — that I had to hold back my tears. People were definitely interested, so we kept working, coordinating meetings, both physical and by phone, paying bills, interviewing people with autism and their parents, and writing and proofreading documents while, across the country, a web of researchers (including my boss) and end-users (the people and organisations that will implement the research) was being woven. These incredible people banded together and put in an application in 2011. We narrowly missed out, and were heartbroken. However, the foundations of what we had created were too strong to uproot so, after another year of meetings and application writing, we tried again.
Yesterday, to our absolute delight, we found out we were successful in our bid. The CRC for Autism Spectrum Disorders (ASD) will run for 8 years from a centre in Brisbane. The federal government has granted $31 million which, together with cash and in-kind contributions from the 56 participants of the CRC, totals $104 million for research on autism. Such research is desperately needed, for ASD is amongst the most severe, prevalent and heritable of all neurodevelopmental disorders. It is a lifelong condition, affecting at least 1 in 100 children, with estimated support costs to Australia potentially exceeding $7 billion p.a.. With an unexplained 25-fold increase in the number of diagnoses in the past 30 years, there are now more children with ASD than the combined number of children with cerebral palsy, diabetes, deafness, blindness and leukaemia.
Over these past few years I have met researchers who are unbelievably intelligent, driven, focussed, and completely committed to using their intellect and expertise to better the lives of people with autism and their families. I have met individuals with the disorder and appreciated how hard it is for them to interact in a world we take for granted. I have heard parents speaking passionately about their tireless, and tiring, efforts to get care and intervention for their children. It has been the most eye-opening and rewarding experience, and I am so grateful that this funding has been made available to enable us to coherently address this complex disorder, and to better the lives of who are affected by it.