Rethinking body representations in autism across cultures
This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.
About the autistic author markerMourad, J., Grosjean, B., Perroud, N., Bogaerts, K., Desseilles, M., & Bonnechère, B. (2025). Rethinking body representations in autism across cultures. Frontiers in Psychiatry, 16, 1612219-1612219. https://doi.org/10.3389/fpsyt.2025.1612219
- Journal or book title
- Frontiers in Psychiatry
- Publisher
- Frontiers Media SA
- Volume
- 16
- Pages
- 1612219-1612219
- Article number
- 1612219
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Authors
Abstract
questionnaires and evaluations have primarily been developed in a limited set of developed nations, including France (10,11), Saudi Arabia (15,19), Japan (13), the USA (14), the UK (15), Sweden (16) and Austria (17). This concentration in developed countries restricts the applicability of these tools. Despite cultural commonalities, biased assessments overlook global BR diversity, neglecting many cultures and hindering autism diagnosis and support worldwide. Consequently, future research must prioritize developing universally adaptable assessments that accommodate cultural and linguistic diversity, enhancing both accuracy and accessibility. Because cultural norms significantly shape how BR manifest and how autism is perceived, e.g., varying norms around eye contact and social engagement (18)(19)(20), it is essential to assess BR within these contexts. This necessity extends well beyond autism, as cultural beliefs and practices shape health-seeking behaviors and the interpretation of symptoms across different populations. Culturally grounded adaptations in autism interventions improve effectiveness, as emphasized by Keehn (21), and cultural beliefs influence care practices and treatment outcomes (21,22). A one-size-fits-all approach to autism assessment may therefore overlook critical cultural nuances, potentially leading to misdiagnosis or ineffective interventions.Therefore, this opinion highlights the importance of integrating cultural factors in the assessment of BRs in autism.Currently, the vast majority of the studies are being conducted in high-income countries (HIC), which leads to biased understandings of autism (23), limiting the generalizability of findings to non-Western populations. While 80% of the population lives in LMICs (23), research on autism in lowand middle income countries (LMICs) is still very limited, and many individuals remain undiagnosed due to the lack of culturally appropriate diagnostic tools (24)(25)(26)(27). For example in China, diagnostic services are still developing, resulting in lower prevalence rates 39.23 per 10,000 compared to higher-income countries like the USA and Northern Europe (1% to 2.21%); this gap can be attributed to diagnostic tools that overlook cultural differences, language barriers, and varying levels of autism awareness (23)(24)(25)(26)(27)(28)(29). This disparity is evident in epidemiological studies, where 26 of 37 surveys were from high-income countries and only 11 from middle-income countries (average prevalence 0.47%), with no studies from low-income countries (19). In Nigeria and South Africa, researchers highlight persistent barriers such as low diagnostic awareness, cultural stigma, and a lack of regionally adapted screening tools (24,25). Similarly, in India, Dey et al. conducted an online survey followed by an indepth conversation with parents of autistic children and autistic adults emphasizing the need for culturally grounded autism priorities and tools (26). These studies demonstrate that underdiagnosis in LMICs is not solely due to economic constraints, but also to fundamental mismatches between Western-based diagnostic models and local sociocultural frameworks.To better evaluate the research specifically performed around BR in ASD we performed a bibliometric analysis. Bibliometric analysis is a quantitative method for mapping scientific literature, allowing researchers to identify trends, collaboration networks, knowledge gaps and potential future research direction by analyzing publication metadata (30). Data for the present study was obtained from the WoS (accessed on 15 April 2025), using MeSH and title/abstract keywords related to autism spectrum disorder (e.g., "ASD," "autism," "Asperger's syndrome") and body representations (e.g., "body awareness," "interoception," "body schema," "proprioception," "sensorimotor integration," "embodiment," "motor imagery"). A total of 4,024 documents including research articles, review articles and book chapters formed the final dataset, with data processed using VOSviewer to visualize and map collaboration networks (31).Before 2000 we observed that this concept was scarcely studied, but it has since experienced exponential growth. (Figure 1B). As for studies about the prevalence of ASD we observed that most, if not all the studies, are being performed in HIC (the 20 most significant contributor are presented in Figure 1C). Another important finding, potentially limiting the external validity of these studies, from a cultural point of view, is that most of the studies are being performed in one single country and that, as depicted in Figure 1A, there are almost no collaborations with LMICs.The main challenges in assessing BRs in various cultures 3.1 Cultural background: between similarities and differences in regional patternsOne crucial aspect to consider is that cultural similarities across certain regions or countries can result in similar patterns in the manifestation of BR and other autism-related characteristics. Countries with shared cultural, historical, or linguistic backgrounds are more likely to exhibit comparable societal norms and attitudes towards body perception. This common cultural foundation can lead to similarities in research outcomes within these regions. For example, studies conducted in countries which share cultural and linguistic resemblances, often show analogous results in terms of BRs assessments and autism prevalence (23). Countries in the Middle East, like Saudi Arabia and Egypt, may exhibit parallel outcomes due to shared cultural and religious norms (32)(33)(34)(35)(36). Similarly, countries influenced by Latin European and Western biomedical traditions share cultural and scientific framework, public health and educational systems, ultimately leading to alike societal attitudes toward body perceptions.
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- 1
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- 1
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- 0
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- 0
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- 1
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