Presented by Melanie Heyworth, Macquarie University, Reframing Autism and Liz Pellicano, Macquarie University, University College London
Can non-autistic scientists ever really understand what autistic people and their families need from their research? That’s a question that activists, community groups and even some researchers themselves have been asking with increasing vigour over recent years.
In the last two decades, international investment in autism science has grown extensively and the number of papers published on autism increased 10-fold, far surpassing publications on related topics. Yet remarkably little of this research maps on to the everyday experience of autism as understood by autistic people themselves and nor does it map onto the priorities that autistic people have for research about autism. It has also largely failed to be translated into meaningful supports that can help autistic people overcome the obstacles they frequently face in life.
In this talk, Dr Melanie Heyworth and Professor Liz Pellicano outline why this might be the case and what autism scientists need to do about it. Specifically, they argue that truly understanding autism and supporting autistic people to lead flourishing lives requires a power shift – one in which autistic people and their allies are actively involved as partners in the research process. Mel and Liz provide examples of such participatory approaches, illustrating the various ways in which the involvement of autistic partners can play a crucial role in enhancing autism research and making its outcomes meaningful and relevant.
Dr Melanie Heyworth is an Autistic Autism researcher, mother to three exceptional Autistic children, and PhD student within the Macquarie School of Education. She is the CEO and founder of the Australian Autistic-run charity, Reframing Autism, which aims to disrupt the status quo for the Autistic community by providing Autistic-led research, therapies, and education. Mel is passionate about genuinely co-produced research, and regularly contributes to, and provides Autistic insights on, Autism research. Until recently, she co-chaired the Australasian Autism Research Council (AARC) and is currently the deputy co-chair on the Department of Health and Aged Care’s National Roadmap for the Health and Mental Health of Autistic People Working Group, as part of the National Autism Strategy. Mel’s current research focus is the experiences of parenting Autistic children.
Professor Liz Pellicano has long been committed to transforming autism science so that it more accurately reflects everyday autistic life. She is Professor of Autism Research at University College London (UCL), having recently been Professor at Macquarie University, Sydney, Australia. Previously, she was Professor of Autism Education and Director of the Centre for Research in Autism and Education (CRAE) at UCL Institute of Education. Her most recent research, funded by a Future Fellowship from the Australian Research Council, identifies ways to bridge the gap between lab and life and open up research to greater involvement of Autistic people themselves, with the aim of generating scientific discoveries that bring real benefits to Autistic people and their families.