Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 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.

PubMed Disclaimer

Similar articles

See all similar articles

References

    1. Alhalel, J., Francone, N., Post, S., O’Brian, C. A., & Simon, M. A. (2022). How should representation of subjects with lep become more equitable in clinical trials? AMA Journal of Ethics, 24(4), 319–325. https://doi.org/10.1001/amajethics.2022.319 - DOI
    1. Angell, A. M., Empey, A., & Zuckerman, K. E. (2018). Raising a child with autism in a Hispanic family : A qualitative analysis of parents’ perspectives. Journal of Developmental & Behavioral Pediatrics, 39(8), 602–609. https://doi.org/10.1016/j.acap.2013.12.004 - DOI
    1. Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L., Caplan, R., Cook, B., Gassner, D., Hector, B. L., Morgan, L., Nebeker, L., Purkis, Y., Rankowski, B., Wittig, K., & Coughlin, S. S. (2020). Listening to the autistic voice : Mental health priorities to guide research and practice in autism from a stakeholder - Driven project. Autism: The International Journal of Research and Practice, 24(4), 822–833. https://doi.org/10.1177/1362361320908410 - DOI - PubMed
    1. Botha, M. (2021). Academic, activist, or advocate? Angry, entangled, and emerging: A critical reflection on autism knowledge production. Frontiers in Psychology, 12, 727542. https://doi.org/10.3389/fpsyg.2021.727542 - DOI - PubMed - PMC
    1. Botha, M., Dibb, B., & Frost, D. M. (2022). Autism is me : An investigation of how autistic individuals make sense of autism and stigma. Disability & Society, 37(3), 427–453. https://doi.org/10.1080/09687599.2020.1822782 - DOI

LinkOut - more resources