Co-Design and Lived Experience in Autism Research: What to Look For

A research project may say that it values lived experience, involves the community or uses co-design. Those phrases are a starting point for questions. To understand what they mean in practice, look at who can influence decisions, when they become involved and what support makes their contribution possible.

This guide is for people considering a research partnership and readers assessing how a project was developed. It offers questions to ask rather than a certification checklist. Different projects use different arrangements, and an honest description of a limited role is more useful than an impressive label without detail.

Clarify the role behind the invitation

Autism CRC’s overview describes participatory research as involving community members in shaping research, with power-sharing central to the approach. It distinguishes this from contributing only as a study participant. Its Australian guidance offers a framework for discussion, not a guarantee about a particular Canadian project.

Ask whether you are being invited to answer research questions, advise the team, make decisions with it or lead part of the work. A project can include several roles. The important point is that each person understands the role they are accepting.

A one-off consultation can provide useful feedback. It should be described accurately if the team has already fixed the central question, methods and budget. Ask what remains open to change rather than assuming that the word “co-design” means every decision will be shared.

Find out when influence begins and ends

Map the project stages in ordinary language: deciding what to study, planning how to do it, carrying out the work, interpreting findings and sharing results. Ask where community partners have a role and which stages have already passed.

The Canadian Institutes of Health Research’s SPOR engagement framework identifies inclusion, support, mutual respect and working together from the outset as guiding principles. Its health-research terminology uses “patient” broadly; an autistic person need not adopt that identity to discuss the underlying partnership arrangements.

Ask for a concrete example of a decision that partners could change. “You can advise on whether the interview questions make sense, and revisions will be agreed before recruitment” tells you more than “We welcome your voice.” If some decisions are fixed by funding or other requirements, ask the team to state those limits.

Look at what makes contribution possible

The AASPIRE practice-based guidelines draw on three research partnerships and distinguish autistic adults’ roles as co-researchers and participants. They address clear roles, communication, power-sharing, trust and fair compensation. These are lessons from particular partnerships, not proof that one arrangement suits everyone.

Translate a broad access promise into the arrangements you need. You may want documents in advance, a written way to respond after a meeting or clarification of unfamiliar research terms. Ask how the team will handle a request that conflicts with someone else’s access needs.

Consider the work outside meetings. Reading a long proposal or commenting on a draft takes time. Ask which preparation tasks are expected and whether the time estimate and payment arrangements include them. Record the agreement so that neither side relies on different assumptions.

You should not have to disclose every personal experience to explain why a meeting format is difficult. Describe the arrangement that would help and ask how it can be provided. Decide separately which experiences you want to contribute to the research discussion.

Ask whose experience is included

One autistic person cannot describe everyone’s life. Ask how the team identified the perspectives relevant to its question, which perspectives may be absent and what it is doing about barriers to involvement. A project about a specific age group or setting needs an honest explanation of that focus.

Distinguish autistic people’s own contributions from those of family members, professionals and other supporters. All may offer relevant knowledge, but they do not automatically speak from the same position. When a supporter helps someone communicate or participate, clarify whose view is being recorded.

Avoid judging the quality of involvement only by a photograph or list of names. A longer list does not explain whether people had usable information, sufficient time or meaningful influence. The process and decisions provide more useful evidence than appearances alone.

Check how disagreement and feedback work

Ask what happens when partners disagree with an interpretation or proposed wording. Does the team discuss alternatives, use an agreed decision process or record differing views? A promise that everyone will always agree is less useful than a clear way to handle disagreement respectfully.

In a fictional example, a group reviewing a survey points out that a question combines two different experiences. The team separates the question, explains the change and returns the revision for review. If a suggested change cannot be made, the team records why and invites further discussion. This makes the contribution visible without claiming every suggestion must be adopted.

Agree how names, quotations and acknowledgements will be used. Ask whether someone can contribute without becoming a public example of the project. Discuss credit and authorship expectations early enough to avoid surprises when findings are shared.

Decide whether the role fits you

You may care about a project but have limited time or prefer a narrow role. Ask whether the invitation can be adjusted without misrepresenting your contribution. A manageable commitment with clear expectations can be more useful than agreeing to work you cannot sustain.

Keep a short record of the role, contacts, schedule and arrangements. Set a point to review whether the partnership is working as described. If you want to step back, discuss outstanding work, confidentiality and how your contribution will be described after you leave.

Common questions