3 min read time.
“I want to better understand what Autistic flourishing might look like, and how we can foster such flourishing across the lifespan.”
Dr Mel Heyworth has recently joined the Olga Tennison Autism Research Centre as Deputy Director (Community & Co-Design) of the Australian Autism Knowledge Hub (AAKH), bringing her expertise of research, advocacy and community engagement to the role.
Mel’s academic journey began a millennium ago with late pre-Conquest England, where she undertook her first PhD. Her circumstances have since steered her towards autism research, and she is now close to completing a second PhD. This time, her research examines the experiences of parents of Autistic children, seeking a more nuanced account of the complexity of parent experiences and outcomes.
Mel’s work is grounded in a strong interest in Autistic wellbeing and flourishing, as well as participatory approaches informed by relational ethics of care. Her research has included Autistic wellbeing during COVID-19, and she is currently contributing to projects exploring Autistic experiences of gender euphoria, emotionality in autism research, sensory experiences, Autistic autonomy and ways of rethinking participatory autism research.
Across these different areas, Mel’s focus is consistent: challenging long-held assumptions and stereotypes about Autistic lives, while making space for the complexity and diversity of Autistic experiences.
“Broadly speaking, my research seeks to hold space for Autistic experiential expertise in ways that seek patterns but are not reductive or unidimensional,” she says. “My work is around people’s stories, understanding the rich narrative of our dynamic lives in context, and finding the nuance that explains how and why our Autistic experiences are unique – or not.”
Mel’s path into autism research was shaped by her own family experience. She is a late-identified Autistic parent to three Autistic teenagers, whom she has homeschooled since her eldest was due to start Year 3. When her eldest child was identified as Autistic at five, Mel began researching autism and was struck by how little of the research reflected her family’s experiences and priorities.
“The disparity between the research on the one hand, and my needs and priorities for my family on the other, was shocking,” she says.
That experience helped shape her commitment to ensuring that research values the expertise of Autistic people and their families.
For Mel, meaningful participation requires more than simply following a set of processes. She argues that participatory research needs to be underpinned by values including relational ethics of care, epistemic justice, power-sharing and equity, rather than becoming a “participatory recipe” that risks tokenism.
“I also wish that experiential knowledge was valued alongside research knowledge,” she says. “We need to do better at listening to community expertise so that research actively benefits Autistic people and improves their lives.”
As a Deputy Director of the Australian Autism Knowledge Hub, Mel is excited to bring that focus to a much larger platform, helping ensure that research is relevant and meaningful to the diverse communities it aims to serve.
“I’m really excited to be part of the Hub to bring focus to our community’s vast and diverse experiential expertise,” she says. “I hope my work with the Hub will let me do this.”
Find out more about the AAKH here: Australian Autism Knowledge Hub, Olga Tennison Autism Research Centre, Projects, La Trobe University
