Beautification and obscuration: the unintended consequences of jointly constructed anti-stigma narratives on medical resource inequality for autistic individuals

Abstract Background Neurodiversity emerged from autistic self-advocacy communities in the mid-1990s. Other anti-stigmatization narratives are widely advocated to reduce autism-related stigma. In China, parent-led organizations and charitable organizations have played an indispensable role in challenging discriminatory attitudes and protecting the dignity of autistic individuals and their families, notably through anti-stigma narratives such as “Gūdúzhèng” [literally meaning “autism” with a focus on loneliness, an alternative term to avoid stigma], “children of the stars,” and “genius narrative.” However, the impact of these specific one-sided beautification narrative strategies on access to medical resources and health equity remains under-researched, with limited attention to the potential unintended consequences of such positive narratives. Methods This study adopted a qualitative descriptive research design and selected four cities through purposive sampling. Data collection methods included semi-structured interviews and participant observation. Results The study drew three core conclusions: (1) Disability-removing narratives (such as “Gūdúzhèng”) may inhibit parents from applying for disability certificates for their children, hindering access to medical resources; (2) Homogenized terms (such as “Gūdúzhèng” and “genius”) obscured the heterogeneity of the autism spectrum and comorbid medical needs, reducing the supply of charitable medical resources; (3) Templated charitable fundraising narratives exacerbated the Matthew Effect in the allocation of charitable resources. Conclusion The jointly constructed homogenized and templated beautified narratives of autism are designed to reduce stigma and are pursued with the legitimate goal of safeguarding dignity. However, they inadvertently perpetuate reverse stigmatization and conceal the genuine medical and rehabilitation needs of autistic individuals, contributing to autism-related health inequality. This study emphasizes the urgent need for balanced narrative frameworks that integrate identity, dignity, and explicit recognition of autism spectrum heterogeneity and lifelong support needs.