Whose Experiences Are Represented in Autism Research? Looking at Who Takes Part in Australian Autism Research and How They Are Described

Authors

Abstract

Despite a growing body of autism research, significant gaps remain regarding whose experiences are reported, necessitating a comprehensive assessment of representation across the evidence base. This systematic mapping review examined demographic reporting and representation of autistic participants in Australian autism research published between 2023 and 2025. Searches across 46 academic databases identified 517 Australian autism empirical research articles, of which 467 involved human participants and 272 included demographic data for autistic participants. Demographic reporting of included articles was examined using the PROGRESS-Plus framework alongside priority and intersectional groups identified in Australia's National Autism Strategy. Gender/sex and age were the most frequently reported characteristics, appearing in 89.3% and 74.6% of articles, respectively. In contrast, reporting for First Nations identity, cultural background, socioeconomic status, intellectual disability, communication profiles, sexual orientation+ status, and very high support needs were considerably less common. Eligibility criteria also shaped representation, with many studies requiring a formal autism diagnosis and some excluding participants based on English proficiency, English literacy, intellectual disability, communication profile, or non-speaking status. These findings indicate that many autistic participants remain demographically invisible in autism research, limiting the understanding of whose experiences underpin the evidence base. More consistent demographic reporting, clearer justification of exclusion criteria, and more accessible recruitment and participation methods are needed to support equity, transparency, and policy relevance in autism research. While this study focused on the Australian context, the findings may reflect broader challenges in demographic representation and reporting within autism research internationally.

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