Co-designing romantic relationship resources for autistic youth
The project exemplifies authentic codesign practices by embedding lived experience into all aspects of the initiative, from initial conception through to implementation.
In early October, as part of the SSSHARC Research Impact Accelerator program, the project held a collaborative 5-hour workshop on campus.
The workshop brought together autistic people aged 16 – 25 years, educators and researchers to codesign resources that would help young people navigate romantic relationships.
The workshop was led by Aidan McKeegan, a high school teacher with lived experience of autism and ADHD. Aidan was joined by co-facilitators from the Sydney School of Education and Social Work (SSESW), Associate Professor Cathy Little, Dr Jessica Zanuttini, and PhD Candidate Khalifah Aldughaysh, who all have extensive experience working with young people with autism and research interests in codesign, social skill interventions, and autistic student voice.
During the workshop the team facilitated an open dialogue, allowing participants to share their personal experiences of romantic relationships. Participants also reviewed existing resources such as dating apps and educational websites.
The workshop concluded with a preliminary scoping of next steps in the development of a new, more relevant resource tailored to the needs of young autistic people.
The project adheres to the well-known motto ‘Nothing about us without us’, which has been used by disability advocacy organisations for over twenty years in order to emphasise the importance of including people with disability in research, advocacy, and decision-making that affects them.
Codesign recognises lived experience as a form of expertise that is just as critical to the development of good policy or intervention as technical, professional, or theoretical knowledge. By practicing codesign traditional power dynamics in disability research can be challenged and dismantled.
This approach ensures that research prioritises 1) issues that matter most to the community and 2) outputs that are meaningful for the community.
Prepare to be uncomfortable with potential changes in your research ideas, plans, and timelines – as your codesign community may change the course of the project at any stage. Take the time to establish genuine connections with your codesign community, establish trust and respect before anything else.
Speaking about codesign in a recent training session for researchers, project team lead Jessica Zanuttini recalled an instance where she had to significantly revised a protocol document that outlined expectations of how the project team would engage with community participants.
A young autistic film director took one look at the document and said, “What the **** is this? It’s too confusing”.
The uncensored feedback prompted the team to simplify the document and make it more accessible. This resulted in the development of a single page, plain-English flyer and short explainer video.
“This was the precise moment that we knew that there was work to be done on turning our very-academic protocol document into a more accessible piece for our community members,” Dr Zannutini said.
The SSSHARC codesign workshop sparked interest in ongoing involvement in the project from the participants.
Having a potential youth advisory group in the wings, marks an exciting step forward in creating inclusive, tailored resources that are relevant to young autistic people navigating romantic relationships and other social codes.
The Research Impact Accelerator will be running again in 2025. In December, SSSHARC will be issuing a call for Expressions of Interest from collaborative teams pursuing research-informed projects that foreground social impact objectives and activities.
