Skip to main content

In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers

Abstract

Most evidence-based autism spectrum disorder (ASD) interventions are tested with primarily White, mid-upper class, English-speaking populations, despite the increase in Latino children with ASD in early intervention programs throughout the United States. Unfortunately, interventions that are incongruent with a target population’s culture may be relatively ineffective. This mixed-methods study explored how culturally appropriate, feasible, and acceptable Latino caregivers perceived intervention models, strategies, and targets. Survey data were compared for 28 Latino and 27 non-Latino White parents of young children with ASD. Further, 20 Latino caregivers participated in focus groups to describe their challenges, perspectives and preferences for intervention strategies and models, and unmet needs from providers. These findings underscore the need for culturally modified interventions for Latino children and families.

This is a preview of subscription content, access via your institution.

References

  1. Aday, L., Chiu, G., & Andersen, R. (1980). Methodological issues in health care surveys of the Spanish heritage population. American Journal of Public Health, 70, 367–374.

    Article  PubMed  PubMed Central  Google Scholar 

  2. ATLAS.ti7. Version 7.5.12. [Computer software] (2017). Berlin, Scientific Software Development.

  3. Bailey, D., Raspa, M., Olmsted, M., Novak, S., Sam, A., Humphreys, B., & Nelson, R. … Guillen, C. (2011). Development and psychometric validation of the family outcomes survey-revised. Journal of Early Intervention, 33(6), 6–23.

    Article  Google Scholar 

  4. Bailey, D., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M., Rodriguez, P., … Skinner, M. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. American Journal on Mental Retardation, 104, 437–451.

    Article  PubMed  Google Scholar 

  5. Baranek, G., Watson, L., Turner-Brown, L., Field, S., Crais, E., Wakeford, L., … Reznick, J. (2015). Preliminary efficacy of adapted responsive teaching for infants at risk of autism spectrum disorder in a community sample. Autism Research and Treatment, 2015, 1–16.

    Article  Google Scholar 

  6. Beaton, D., Bombardier, C., Guillemin, F., & Ferraz, M. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, 25, 3186–3191.

    Article  PubMed  Google Scholar 

  7. Bender, D. E., Harbour, C., Thorp, J., & Morris, P. (2001). Tell me what you mean by “Si”: Perceptions of quality of prenatal care among immigrant Latina women. Qualitative Health Research, 11(6), 780–794.

    PubMed  Google Scholar 

  8. Benish, S., Quintana, S., & Wampold, B. (2011). Culturally adapted psychotherapy and the legitimacy of myth: A direct-comparison meta-analysis. Journal of Counseling Psychology, 58(3), 279–289.

    Article  PubMed  Google Scholar 

  9. Blanche, E., Diaz, J., Barretto, T., & Cermak, S. (2015). Caregiving experiences of Latino families with children with autism spectrum disorder. The American Journal of Occupational Therapy, 69(5), p1–11.

    Article  Google Scholar 

  10. Borrego, J., Anhalt, K., Terao, S., Vargas, E., & Urquiza, A. (2006). Parent-child interaction therapy with a Spanish-speaking family. Cognitive and Behavioral Practice, 13, 121–133.

    Article  Google Scholar 

  11. Buzhardt, J., Rusinko, L., Heitzman-Powell, L., Trevino-Maack, S., & McGrath, A. (2015). Exploratory evaluation and initial adaptation of a parent training program for Hispanic families of children with autism. Family Process, 55(1), 1–16.

    Google Scholar 

  12. Carlson, V., & Harwood, R. (2003). Attachment, culture and the caregiving system: The cultural patterning of everyday experiences among Anglo and Puerto Rican mother-infant pairs. Infant Mental Health Journal, 24(1), 53–73.

    Article  Google Scholar 

  13. Castro, F., Barrera, M., & Holleran Steiker, L. (2010). Issues and challenges in the design of culturally adapted evidence-based interventions. Annual Review of Clinical Psychology, 6, 213–239.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Chavira, V., López, S., Blacher, J., & Shapiro, J. (2000). Latina mothers’ attributions, emotions, and reactions to the problem behaviors of their children with developmental disabilities. Journal of Child Psychology and Psychiatry, 41(2), 245–252.

    Article  PubMed  Google Scholar 

  15. Elder, J., Valcante, G., Won, D., & Zylis, R. (2003). Effects of in-home training for culturally diverse fathers of children with autism. Issues in Mental Health Nursing, 24(3), 273–295.

    Article  PubMed  Google Scholar 

  16. Fischer, C., Harvey, E., & Driscoll, P. (2009). Parent-centered parenting values among Latino immigrant mothers. Journal of Family Studies, 15, 296–308.

    Article  Google Scholar 

  17. Fontil, L., & Petrakos, H. (2015). Transition to school: The experiences of Canadian and immigrant famlies of children with autism spectrum disorders. Psychology in the Schools, 52, 773–788.

    Article  Google Scholar 

  18. Garcia, E., Breslau, J., Hansen, R., & Miller, E. (2012). Unintended consequences: An ethnographic narrative case series exploring language recommendations for bilingual families of children with autistic spectrum disorders. Jounral of Medical Speech-Language Pathology, 20(2), 10–16.

    Google Scholar 

  19. Gorman, J., & Baiter, L. (1997). Culturally sensitive parent education: A critical review of quantitative research. Review of Education Research, 67(3), 339–369.

    Article  Google Scholar 

  20. Grau, J., Duran, P., Castellanos, P., Smith, E., Silberman, S., & Wood, L. (2015). Developmental outcomes of toddlers of young Latina mothers: Cultural, family, and parenting factors. Infant Behavior and Development, 41, 113–126.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Haack, L. M., Gerdes, A. C., & Lawton, K. E. (2014). Conducting research with Latino families: Examination of strategies to improve recruitment, retention, and satisfaction with an at-risk and underserved population. Journal of Child and Family Studies, 23(2), 410–421.

    Article  Google Scholar 

  22. Halgunseth, L., Ispa, J., & Rudy, D. (2006). Parental control in Latino families: An integrated review of the literature. Child Development, 77, 1282–1297.

    Article  PubMed  Google Scholar 

  23. Harwood, R., Leyendecker, B., Carlson, V., Asencio, M., & Miller, A. (2002). Parenting among Latino families in the U.S. In M. Bornstein (Ed.), Handbook of parenting: Vol. 4: Social conditions and applied parenting (2nd edn., pp. 21–46). Mahwah, NJ: Lawrence Erlbaum Associates Publishers.

    Google Scholar 

  24. Harzing, A.-W. (2006). Response styles in cross-national survey research. International Journal of Cross Cultural Management, 6(2), 243–266.

    Article  Google Scholar 

  25. Hojat, M., & Xu, G. (2004). A visitor’s guide to effect sizes: Statistical significance versus practical (clinical) importance of research findings. Advances in Health Sciences Education, 9(3), 241–249.

    Article  PubMed  Google Scholar 

  26. Hwa-Froelich, D., & Vigil, D. (2004). Three aspects of cultural influence on communication: A literature review. Communication Disorders Quarterly, 25(3), 107–118.

    Article  Google Scholar 

  27. Iland, E., Weiner, I., & Murawski, W. (2012). Obstacles faced by Latina mothers of children with autism. Californian Journal of Health Promotion, 10, 25–36.

    Google Scholar 

  28. Ingersoll, B., Wainer, A., Berger, N., Pickard, K., & Bonter, N. (2016). Comparison of a self-directed and therapist-assisted telehealth parent-mediated intervention for children with ASD: A pilot RCT. Journal of Autism and Developmental Disorders, 46, 2275–2284.

    Article  PubMed  Google Scholar 

  29. Johnson, T., Shavitt, S., Holbrook, A. (2011). Survey response styles across cultures. In Matsumoto, D. & van de Vijver, F. (Eds.), Cross-cultural research methods in psychology (pp. 130–175). Cambridge: Cambridge University Press.

    Google Scholar 

  30. King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with chronic conditions and their families: development of a refined measure of processes of care. Children’s Health Care, 33, 35–57.

    Article  Google Scholar 

  31. Koegel, R., Schreibman, L., Britten, K., Burke, J., & O’Neill, R. (1982). A comparison of parent training to direct child treatment. In R. Koegel, A. Rincover & A. Egel (Eds.), Educating and understanding autistic children (pp. 260–279). Houston: College Hill Press.

    Google Scholar 

  32. Lobar, S. (2014). Family adjustment across cultural groups in autistic spectrum disorders. Advances in Nursing Science, 37(2), 174–186.

    Article  PubMed  Google Scholar 

  33. Long, K., Kao, B., Plante, W., Seifer, R., & Lobato, D. (2015). Cultural and child-related predictors of distress among Latina caregivers of children with intellectual disabilities. American Journal on Intellectual and Developmental Disabilities, 120(2), 145–165.

    Article  PubMed  Google Scholar 

  34. Lopez, K. (2014). Sociocultural perspectives of Latino children with autism spectrum disorder. Best Practices in Mental Health, 10(2), 15–31.

    Google Scholar 

  35. Magaña, S., Lopez, K., & Machalicek, W. (2015). Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process. https://doi.org/10.1111/famp.12169.

    PubMed  Google Scholar 

  36. Mahoney, G., & Perales, F. (2003). Using relationship-focused intervention to enhance the social-emotional functioning of young children with autism spectrum disorders. Topics in Early Childhood Special Education, 23(2), 77–89.

    Article  Google Scholar 

  37. Marquis, W., & Baker, B. (2014). An examination of Anglo and Latino parenting practices: Relation to behavior problems in children with or without developmental delay. Research in Developmental Disabilities, 35(2), 383–392.

    Article  PubMed  Google Scholar 

  38. McConachie, H., & Diggle, T. (2007). Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. Journal of Evaluation in Clinical Practice, 13(1), 120–129.

    Article  PubMed  Google Scholar 

  39. Moustakas, C. (1994). Phenomenological Research Methods. Thousand Oaks, California: Sage Publications, Inc.

  40. Parra Cardona, J., Domenech-Rodriguez, M., Forgatch, M., Sullivan, C., Bybee, D., Holtrop, K., … Bernal, G. (2012). Culturally adapting an evidence-based parenting intervention for Latino immigrants: The need to integrate fidelity and cultural relevance. Family Process, 51(1), 56–72.

    Article  PubMed  Google Scholar 

  41. Patterson, S., Smith, V., & Mirenda, P. (2011). A systematic review of training programs for parents of children with autism spectrum disorders: Single subject contributions. Autism, 16, 498–522.

    Article  Google Scholar 

  42. R Core Team (2015). R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, https://www.R-project.org/.

  43. Roberts, M., & Kaiser, A. (2011). The effectiveness of parent-implemented language interventions: A meta-analysis. American Journal of Speech-Language Pathology, 20, 180–199.

    Article  PubMed  Google Scholar 

  44. Rodriguez, M., Davis, M., Rodriguez, J., & Bates, S. (2006). Observed parenting practices of first-generation Latino families. Journal of Community Psychology, 34(2), 133–148.

    Article  Google Scholar 

  45. Rodriquez, B., & Olswang, L. (2003). Mexican-Ameircan and Anglo-American mothers’ beliefs and values about child rearing, education, and lanugage impairment. American Journal of Speech-Language Pathology, 12, 452–462.

    Article  Google Scholar 

  46. Rogers, S., Estes, A., Lord, C., Vismara, L., Winter, J., Fitzpatrick, A., … Dawson, G. (2012). Effects of a brief early start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: A randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 51, 1052–1065.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Rogers, S., & Vismara, L. (2014). Interventions for infants and toddlers at risk for autism spectrum disorder. In F. Volkmar, S. Rogers, R. Paul & K. Pelphry (Eds.), Handbook of autism and pervasive developmental disorders (4th edn., pp. 739–765). Hoboken: Wiley.

    Google Scholar 

  48. Saint-Germain, M., Bassford, T., & Montano, G. (1993). Surveys and focus croups in health research with older Hispanic women. Qualitative Health Research, 3, 341–367.

    Article  Google Scholar 

  49. Sam, A. & AFIRM Team. (2015). AFIRM Modules. Chapel Hill, NC: National Professional Development Center on Autism Spectrum Disorder, FPG Child Development Center, University of North Carolina. Retrieved from http://afirm.fpg.unc.edu.

  50. Siller, M., & Sigman, M. (2008). Modeling longitudinal change in the language abilities of children with autism: Parent behaviors and child characteristics as predictors of change. Developmental Psychology, 44, 1691–1704.

    Article  PubMed  Google Scholar 

  51. Tamis-LeMonda, C., Bornstein, M., & Baumwell, L. (2001). Maternal responsiveness and children’s achievement of language milestones. Child Development, 72, 748–767.

    Article  PubMed  Google Scholar 

  52. Technical Assistance and Dissemination Network (2011). Historical state-level IDEA data files. Retrieved on 2/8/16 from http://tadnet.public.tadnet.org/pages/712.

  53. U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2013.

  54. Vigil, D., & Hwa-Froelich, D. (2004). Interaction styles in minority caregivers: Implications for intervention. Communication Disorders Quarterly, 25(3), 119–126.

    Article  Google Scholar 

  55. Wetherby, A., Guthrie, W., Woods, J., Schatschneider, C., Holland, R., Morgan, L., & Lord, C. (2014). Parent-implemented social intervention for toddlers with autism: An RCT. Pediatrics, 134, 1084–1093.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Windham, G. C., Smith, K. S., Rosen, N., Anderson, M. C., Grether, J. K., Coolman, R. B., … Bingham, A. (2012). Observed parenting practices of first-generation Latino families. Journal of Autism and Developmental Disorders, 43(2), 1–16.

    Google Scholar 

  57. Woods, J., & Wetherby, A. (2003). Early identification of and intervention for infants and toddlers who are at risk for autism spectrum disorder. Language Speech and Hearing Services in Schools, 34(3), 180–193.

    Article  Google Scholar 

  58. Zayas, L., & Rojas-Flores, L. (2002). Learning from Latino parents: Combining etic and emic approaches to designing interventions. In J. Contreras & K. Kerns (Eds.), Latino children and families in the United States: Cureent research and future directions (pp. 233–249). Westport, CT: Praeger Publishers/Greenwood Publishing Group.

    Google Scholar 

  59. Zayas, L., & Solari, F. (1994). Early childhood socializations in hispanic families: Context, culture, and practice implications. Professional Psychology: Research and Practice, 25(3), 200–206.

    Article  Google Scholar 

  60. Zetlin, A., Padron, M., & Wilson, S. (1996). The experience of five Latin American families with the special education system. Education and Training in Mental Retardation and Developmental Disabilities, 31(1), 22–28.

    Google Scholar 

  61. Zuckerman, K., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics, 35, 522–532.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgments

This project was funded by the Carolina Center for Public Service through a Community Engagement Fellowship. The Autism Research Registry, which assisted in recruitment, is supported by a grant from The National Institute for Child Health and Human Development (P30-HD003110) to the University of North Carolina at Chapel Hill. We would like to thank each family who participated in this study as well as the research assistants for their hard and tedious work. We would also like to thank our co-facilitator, Diana Wilkenson for her work and dedication to this project. This project was presented in a poster at the International Meeting for Autism Research, 2017.

Author information

Affiliations

Authors

Contributions

MD contributed to the conception and design of the study, completed data collection, analyzed and interpreted the data, and drafted the manuscript; LRW contributed to the conception and design of the study, assisted with the interpretation of results, and critically revised the manuscript; WZ contributed to the analysis of results and critically revised the manuscript.

Corresponding author

Correspondence to Michaela DuBay.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical Standards

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 1 (DOCX 28 KB)

Supplementary material 2 (DOCX 21 KB)

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

DuBay, M., Watson, L. & Zhang, W. In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. J Autism Dev Disord 48, 1623–1639 (2018). https://doi.org/10.1007/s10803-017-3394-8

Download citation

Keywords

  • Latino
  • Parent perspectives
  • Cultural adaptation
  • Evidence-based practices