A comprehensive systematic review of participatory autism research over a 22-year period

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Abstract

Background: Participatory research, which involves community members as partners rather than merely research subjects, has gained prominence in autism research. However, the extent and nature of participatory approaches across the field remain unclear.Methods: We conducted a systematic review of autism research reporting community involvement, searching six databases. We coded who was involved, at what level, and in which research activities, and examined factors associated with participation.Results: We identified 382 studies published between 2001 and 2023, with 95% published in the past decade. Two-thirds (67%) involved Autistic people, though one-third claiming to be "participatory" excluded them entirely. The most common participation level was consulting (31%), with community-led (5%) and community-controlled (1%) research remaining rare. Community involvement concentrated in study design (73%) rather than analysis (33%) or dissemination (29%). Participatory research was heavily concentrated in Western countries (USA, UK, Australia, Canada: 86%), applied research areas, and qualitative studies. Deeper participation was associated with identity-first language use and publication in journals with clear community-centered agendas.Conclusions: While participatory language is increasingly becoming the norm in autism research, genuine power-sharing between researchers and community members is still a rare occurrence. Most participatory research operates at consultative levels, with academic researchers retaining primary decision-making authority. Moving toward authentic participation requires systemic changes to funding structures, institutional policies, and epistemic hierarchies that determine whose knowledge counts.

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