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. 2025 May 15.
doi: 10.1007/s10803-025-06868-y. Online ahead of print.

Time to Listen: Engaging Latino Autistic Adults and Parents as Partners in Advancing Autism Research

Cecilia Montiel-Nava  1 , Chenoa Navarro  2 , Jessica Abouchard  2 , Ana C Ramirez  2 , Victoria Villareal  2 , Rocio Calderon  3 , Susana Perez Kantor  3 , Valerie Neeley  2 , Alberto Allegre  4 , Antonio F Pagán  5 , Maria C Montenegro  2
Affiliations

Time to Listen: Engaging Latino Autistic Adults and Parents as Partners in Advancing Autism Research

Cecilia Montiel-Nava et al. J Autism Dev Disord. .

Abstract

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.

Keywords: Autism; Community-based participatory research; Health disparities; Intersectionality; Latinos; Stakeholders.

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