Montiel-Nava Cecilia, Navarro Chenoa, Abouchard Jessica, Ramirez Ana C, Villareal Victoria, Calderon Rocio, Kantor Susana Perez, Neeley Valerie, Allegre Alberto, Pagán Antonio F, Montenegro Maria C
Department of Psychological Sciences, University of Texas Rio Grande Valley, 1200 W. University Drive, Edinburg, TX, 78539, USA.
Department of Human Development and School Services (HDSS), University of Texas Rio Grande Valley, Edinburg, TX, USA.
J Autism Dev Disord. 2025 May 15. doi: 10.1007/s10803-025-06868-y.
The limited representation of Latino autistic individuals and their families in research studies limits our understanding of how autism presents and is experienced across diverse communities, emphasizing a need for more inclusive research methodologies and participant recruitment strategies. Our project aimed to explore how participatory research methods can be effectively implemented to develop culturally valid measurement tools and research protocols that accurately capture the experiences of bilingual/bicultural Latino autistic individuals and their families. This study used a phenomenological framework design guided by community-based Participatory research and the social model of disability principles. Two trained researchers conducted three focus groups with Latino parents of autistic children (n = 25) and two with Latino autistic adults (n = 8), and data was analyzed utilizing thematic analysis. We used a consultative model in which a community advisory board provided input throughout the project. Effective research engagement in border Latino communities is contingent on three key factors: fostering cultural and linguistic alignment, building and maintaining institutional trust, and thoughtfully incorporating community symbols. Together, these elements highlight a roadmap for researchers to build sustainable partnerships rooted in respect, equity, and cultural competence. Culturally informed research procedures, led by a culturally sensitive team of Latino researchers and Latino autism community members working as equal partners, can enhance engagement and ensure relevant, valid research studies and priorities. Using a CBPR framework and an intersectionality lens advances equitable representation in autism research and promotes culturally informed responses to the needs of diverse autistic communities.
拉丁裔自闭症患者及其家庭在研究中的代表性有限，这限制了我们对自闭症在不同社区的表现和体验的理解，凸显了采用更具包容性的研究方法和参与者招募策略的必要性。我们的项目旨在探索如何有效实施参与式研究方法，以开发具有文化效度的测量工具和研究方案，准确捕捉双语/双文化拉丁裔自闭症患者及其家庭的经历。本研究采用了一种现象学框架设计，以基于社区的参与式研究和残疾社会模型原则为指导。两名经过培训的研究人员与自闭症儿童的拉丁裔家长进行了三个焦点小组讨论（n = 25），与拉丁裔自闭症成年人进行了两个焦点小组讨论（n = 8），并运用主题分析法对数据进行了分析。我们采用了一种咨询模式，即由一个社区咨询委员会在整个项目中提供意见。在边境拉丁裔社区进行有效的研究参与取决于三个关键因素：促进文化和语言的契合、建立和维护机构信任以及精心融入社区象征。这些要素共同为研究人员勾勒出了一条路线图，以建立基于尊重、公平和文化能力的可持续伙伴关系。由具有文化敏感性的拉丁裔研究人员和拉丁裔自闭症社区成员组成的平等伙伴团队主导的具有文化内涵的研究程序，可以提高参与度，并确保开展相关、有效的研究以及确定优先事项。使用社区参与式行动研究框架和交叉性视角能够促进自闭症研究中的公平代表性，并推动对不同自闭症社区需求做出具有文化内涵的回应。
