Mathieu Giroux, an autistic co-researcher and speaker, was drawn to research by a need to understand a disconnect: the difference between how he experiences autism and how it is defined in clinical and academic settings.
“My autism diagnosis. The need to understand the disparity between my personal perspective and the medical description.”
This search for clarity and nuance continues to fuel his work. A long-time advocate for the rights of autistic people, Mathieu is committed to building lasting, reciprocal relationships between research teams and the communities they aim to serve.
“To give communities access to science — and to give science access to lived experience.”
Co-design as a research approach
For Mathieu, co-design is not just a helpful add-on, but rather a rigorous and valid research method, on par with qualitative and quantitative approaches.
“Even if I’m not an affiliated researcher or a health professional, I have equal decision-making power and responsibility. It’s a true sharing of rights and roles.”
He emphasizes the importance of laying the groundwork early in the research process:
“You need those initial meetings to agree on shared expectations, shared goals, and the role everyone will play.”
Mathieu also highlights that equity doesn’t mean uniformity.
“Not every autistic person will be analyzing data or writing grant proposals, but that doesn’t mean their contribution is worth less. Maybe we couldn’t have done the project at all without their role in things like recruitment or knowledge sharing.”
In one example, the active participation of autistic collaborators helped extend recruitment beyond Quebec, opening the door to new questions about cultural differences.
“Without their involvement, we never would have thought to recruit in Europe. We ended up studying how culture affects quality of life for autistic people.”
Watch: Mathieu Giroux shares his perspective on co-design in research, highlighting the importance of trust, shared goals, and meaningful collaboration between researchers and people with lived experience. (Production: Noah Leon, Moosefuel Media)
Making space for underrepresented perspectives
Mathieu describes himself, with a touch of humor, as someone who might be seen by some psychiatrists as having a “restricted interest” — but his deep curiosity about lives very different from his own is at the core of his work.
“Immersing myself in realities completely different from mine, but where the same hopes and challenges exist.”
He believes people with lived experience can strengthen all kinds of research, even highly technical studies.
“I’m not a neurologist, but I’m invited to be part of neurology and genetics research. Even if I don’t master everything, I can ask useful questions, raise ethical concerns, or help explain research goals to the community.”
This bridging role — between researchers and the communities impacted by their work — is vital for building trust, reducing misunderstandings, and increasing the ethical and social relevance of research.
Watch: In this panel from the 2024 TACC Autism Festival, Mathieu Giroux shares his perspective as an autistic co-researcher on the complexities of building inclusion through housing and living environments. Drawing from both personal experience and years of research collaboration, Mathieu invites us to reflect on how well-meaning initiatives can sometimes reinforce exclusion. (Production: Marrone Films)
A shared vision of research
Mathieu didn’t plan to build a career in research. His activism with Aut’Créatifs led to early collaborations as a co-researcher and consultant, including with sociologist Isabelle Courcy and child and adolescent psychiatrist Baudouin Forgeot d’Arc.
Looking back, he sees co-design as a method that deserves greater recognition.
“Co-design or participatory research is a methodology, just like qualitative or quantitative research. It’s not right for every project, but every project can benefit from some degree of consultation with people with lived experience.”
To those unsure about trying it, Mathieu offers a simple invitation:
“It’s something you need to experience. You can’t know if it interests you until you’ve tried it. It’s not better or worse than other methods, but it can bring insights you’d never have seen otherwise.”
Learn more
To explore Mathieu Giroux’s reflections, writing, presentations, and participatory research projects, visit his personal website.