Who they are
The Participatory Autism Research Collective (PARC) is the first autistic-led research network of its kind in the UK. It was founded in April 2015 at London South Bank University by Damian Milton and Professor Nicola Martin, and is now based at the University of Kent’s Tizard Centre, where Milton holds his lectureship. PARC brings together autistic scholars, autistic activists, early-career researchers, and practitioners who share a commitment to autistic people being co-producers of knowledge about autism rather than passive subjects of it.
PARC is not a research institute and it does not fund studies. It is a network — a community of practice and a platform for people who believe that autism research done without meaningful autistic involvement is both ethically compromised and methodologically weaker.
Focus areas
- Participatory and emancipatory research methods — advocating for autistic people to be involved at every stage of the research process: question formulation, design, data collection, analysis, interpretation, dissemination
- Critical Autism Studies — PARC is closely aligned with the emerging field of Critical Autism Studies (CAS), which examines autism through lenses drawn from disability studies, sociology, and philosophy rather than exclusively from psychology and neuroscience
- Supporting autistic academics — PARC provides a peer network for autistic researchers navigating academic institutions that were not designed for them
- Ethical research practice — promoting standards for how autism research should engage with its participants and with the wider autistic community
Relationship to this wiki
PARC’s principles are directly relevant to the methodological commitments of this wiki and of the work it documents. The SGL research project (see De Sensatie van een Goed Leven (SGL)) used Adapted Intervention Mapping — a participatory method in which network partners (including advocacy bodies like LFB, representing people with intellectual disabilities) were involved throughout, not just consulted at the start. PARC represents the formalised, institutional version of that same impulse: autistic people shaping the questions, not just answering them.
The Double Empathy Problem, Milton’s most cited contribution (see Damian Milton), emerged from the intellectual ecosystem that PARC both reflects and sustains. The network is where the theory meets the methodological commitment — it is not enough to say “autistic people understand other autistic people well”; you then have to actually include autistic people in producing knowledge.
Notable outputs
PARC’s outputs are primarily:
- Conferences and events — annual and ad hoc gatherings bringing together autistic scholars, practitioners, and allies
- Community building — a network that has enabled autistic academics to find each other, collaborate, and push back collectively on research practices they consider extractive
- Publications about participatory methods — multiple papers in the Kent Academic Repository documenting PARC’s development, rationale, and impact:
- Milton, D., & Martin, N. (2017). “The development of the Participatory Autism Research Collective (PARC).” Tizard Centre working paper.
- Milton, D. (2018). “An introduction to the Participatory Autism Research Collective (PARC) and to Critical Autism Studies (CAS).”
- Milton, D. (2021). “From humble beginnings: the development of the Participatory Autism Research Collective (PARC).”
- Milton, D. (2022). “A critical reflection on the development of the Participatory Autism Research Collective (PARC).”
Open questions for a future curator
- Does PARC have a formal relationship with any Dutch organisations — NVA, Academische Werkplaats Autisme, or the universities involved in SGL? If not, should one be explored? The participatory-methods alignment is strong.
- How has PARC’s model influenced research ethics frameworks in the UK? Some universities now require autistic involvement in autism research ethics applications — is PARC directly credited, or is the influence diffuse?
- PARC’s focus is on autistic people without intellectual disability (the academic participants are by definition in higher education). How does the network engage with the participatory-research needs of autistic people with ID, who face additional barriers to involvement? This is a question that matters directly for autistic people with intellectual disability.
Last reviewed
2026-04-12.
Related pages
- Damian Milton — co-founder and chair; the Double Empathy Problem emerged from this intellectual context
- De Sensatie van een Goed Leven (SGL) — shares the participatory-methods commitment, applied in the Dutch context
- Robert Chapman — aligned through Critical Autism Studies