Interviewed by Liam Dow-Hall currently volunteering at Autism West through the Autism CRC Future Leaders Programme
How do you feel about returning to here to Australia?
I’m very excited to be back in Australia. Australian autism research has come a long way since I left Perth all those years ago and the work that the Autism CRC is doing, especially with its commitment to participatory or inclusive autism research, is really progressive. I feel privileged to be able to be part of it.
In what way has working overseas helped in your research?
I learned a lot by working overseas, especially in Oxford and London, where I was fortunate to work with some amazing autism researchers. But what has probably helped my research the most is the fantastic relationships I built with educators, parents and, most of all, autistic people themselves. I’ve learned so much from their experiences and their constant motivation to make the world a better place for themselves, their families or the people they support.
You have said it is important for the autistic community to be involved in research. Why is this important & does it happen?
Involving the Autistic and autism communities in research is so important but it doesn’t nearly happen enough. Our analysis of autism research in the UK showed that the vast majority of the work being done focused heavily on what’s called “basic science” – neural and cognitive systems, genetics and other risk factors – rather than on research targeting the immediate circumstances in which autistic people find themselves, on services, supports and interventions and education. In fact, our report showed that only 5% of research funding in the UK went towards identifying the most effective services for autistic people and their families – only 5%! It’s not surprising, then, that the autistic people and parents of autistic children that we spoke to felt that British academics were not taking enough notice of real-life issues. This isn’t just unique to Britain – it’s a problem that is seen in autism research across the globe.
One way to put this right is to involve autistic people, their family members and practitioners in our research – not just as passive participants or subjects in research but as partners, so that they can have a say in the decisions around what gets researched and how it is researched. Doing so should make our research more relevant to people’s everyday lives, tailored to their needs and consistent with their values.
But – and there’s a big but – out of the thousands of research papers published on autism every year, there is only a handful of studies that are genuinely participatory. Reassuringly, things are changing – and Australian researchers are one of the leaders in this regard, which is great to see.
What do you think from your research are factors that contribute to a good life for the autistic community? Is it different from the neurotypical community?
I think everyone – whether you’re autistic or not – wants to be safe, secure and happy with their lives as they grow older. What is a good life for an autistic person may well be the same as a non-autistic person, but unfortunately, they are rarely asked this question. Research on this issue has tended to focus on neurotypical-defined norms of what a good outcome is for an autistic person – largely in terms intellectual functioning, autistic features and adaptive behaviour or everyday life skills. So those autistic people that are said to have a “good adult outcome” are usually those with higher IQs, fewer autistic features and who are reasonably competent in their day-to-day lives – which pretty much suggests that a good outcome is equal to not being autistic!
In my 12-year follow-up study, we tried to look at things differently. We wanted to understand young people’s views of what they wanted for their own lives. We found that many young people were grappling with their emerging sense of identity – some were celebrating “being autistic” while others reported trying “to be as normal as possible” but – importantly – rarely did they report that being autistic had a negative impact on their lives. They didn’t want to necessarily be less autistic – contrary to the focus of research. We need to do more to ensure that research of this kind is more aligned with the views and values of autistic people – and one key way to achieve that is by involving autistic people from the outset.
Your research project spans 12 years, how was it revisiting these individuals? Did they remember you? Were there any surprises in where people were at?
This follow-up project is very close to my heart. I first saw the children when they were 4 or 5 years old, when I was doing my PhD in Perth. And I remember each and every one of them so clearly. When we went to see them again 12 years later, some of them remembered me – but that might only be because someone called “Liz” sends them Christmas cards every year! It was so lovely to be able to hear how they are doing at school or just out of school and where they want to be in their future lives. One thing that I was a bit surprised (in light of existing research) – but reassured – to hear was that many of them felt more in control of their own lives, and wanted to have more control. They were also very aware of the challenges that they faced but were comforted by the fact that there were people around them (mainly their families) that they could rely on for support. We need to do more – as researchers, professionals, and society more broadly – to improve adult services so that younger and older adults can get the support they need to help them live the lives they want to lead.
What drove you to become a Researcher in autism?
I began my career at as psychology student at the University of Western Australia. Like many students, I started off my career wanting to make a difference to others, to help others, who might need extra support. And again, like many, my first experience of autism began in a textbook – researchers and clinicians describing the so-called “enigma” of autism – which, as a young researcher, absolutely fascinated me. But what really got me hooked was when I began working with a little boy, who had a diagnosis of autism, and his family – just before I started my PhD. The boy had very little language at the time – so he could say 1-2 words, but didn’t really put those words together to make phrases. I worked with him one day a week on some language activities to try to help with his speech and communication. And I was just totally inspired by him and his family. They taught me a lot – about support, about resilience and about empathy and, critically, about the reality of autism.
What myths or perceptions do you think exist still in society around someone who identifies as being on the Autism Spectrum? Do you think that through your work and this up-coming symposium beliefs can be changed?
There are so many myths and misperceptions about autism I don’t know where to start! One of the most challenging issues that I come up against when speaking to educators and employers is the ‘invisible’ nature of autism. Because people can’t ‘see’ a disability, they often just assume that it’s not there and therefore don’t put in place the supports and accommodations that children, young people and adults need to learn and work effectively. Autism West’s upcoming symposium and ones like it are doing so much to combat misperceptions just like this one. Change on this level can be slow so the more we can do to educate people, the better.
What message – if any – do you have for young people who are autistic?
Actually, there was a brilliant quote from one of the young people in the 12-year follow-up study, who said: “It’s definitely important to accept that you’re different. Because the sooner you accept that, the more happy you’ll be with yourself”. Accepting who you are is empowering – and will help you to feel more in control of your life and ultimately lead the life you wish to lead.
Liz will be presenting at our Autism West Symposium in early November, for more information click here.