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Differences in Processes Underlying Autism Service Engagement Among Latina and Non-Latina Mothers

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Abstract

Latino children on the autism spectrum experience less access to autism services and more barriers to service-use than non-Latino White children. Yet, existing research leaves unanswered questions about how cultural, family, and service system-level processes contribute to autism service-use disparities. This study aimed to qualitatively explore how Latina and non-Latina mothers experience similar encounters with autism services. Twenty Latina and non-Latina mothers completed semi-structured interviews regarding their experiences accessing services. Data were analyzed using applied thematic analysis. Ethnicity-based differences emerged in mothers’ service-use motivations (i.e., desiring ongoing support vs. eventual departure), service evaluations (i.e., dissatisfaction vs. satisfaction), and service-seeking approaches (i.e., proactive vs. reactive). Findings illustrate how these processes underlying service engagement may contribute to service disparities for Latino children.

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Notes

  1. The term, “individuals on the autism spectrum” is used throughout as a middle ground between the person-first language recommended by the APA style guide and the identity-first language preferred by autistic self-advocates (Kenny et al., 2016).

References

  • Angell, A. M., Empey, A., & Zuckerman, K. E. (2018). A review of diagnosis and service disparities among children with autism from racial and ethnic minority groups in the United States. International Review of Research in Developmental Disabilities, 55, 145–180.

    Article  Google Scholar 

  • Bilaver, L. A., & Havlicek, J. (2019). Racial and ethnic disparities in autism-related health and educational services. Journal of Developmental & Behavioral Pediatrics, 40(7), 501–510. https://doi.org/10.1097/DBP.0000000000000700

    Article  Google Scholar 

  • Blacher, J., Cohen, S. R., & Azad, G. (2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8(12), 1648–1656. https://doi.org/10.1016/j.rasd.2014.08.017

    Article  Google Scholar 

  • Blacher, J., Stavropoulos, K., & Bolourian, Y. (2019). Anglo-Latino differences in parental concerns and service inequities for children at risk of autism spectrum disorder. Autism, 23(6), 1554–1562. https://doi.org/10.1177/1362361318818327

    Article  PubMed  Google Scholar 

  • Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195–207.

    Article  Google Scholar 

  • Bronfenbrenner, U. (1992). Ecological systems theory. In R. Vasta (Ed.), Six theories of child development: Revised formulations and current issues (pp. 187–249). Jessica Kingsley Publishers.

    Google Scholar 

  • Burke, M. M., & Goldman, S. E. (2018). Special education advocacy among culturally and linguistically diverse families. Journal of Research in Special Educational Needs, 18(S1), 3–14. https://doi.org/10.1111/1471-3802.12413

    Article  Google Scholar 

  • Carlon, S., Carter, M., & Stephenson, J. (2015). Decision-making regarding early intervention by parents of children with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 27(3), 285–305. https://doi.org/10.1007/s10882-014-9415-z

    Article  Google Scholar 

  • Committee on National Statistics, Division of Behavioral and Social Sciences and Education, National Academies of Sciences, Engineering, and Medicine. (2017). The economic and fiscal consequences of immigration. National Academies Press.

    Google Scholar 

  • Constantino, J. N., Davis, S. A., Todd, R. D., Schindler, M. K., Gross, M. M., Brophy, S. L., … Reich, W. (2003). Validation of a brief quantitative measure of autistic traits: Comparison of the social responsiveness scale with the autism diagnostic interview-revised. Journal of Autism and Developmental Disorders, 33(4), 427–433.

  • Edwards, A. G., Brebner, C. M., McCormack, P. F., & MacDougall, C. J. (2018). From ‘parent’ to ‘expert’: How parents of children with autism spectrum disorder make decisions about which intervention approaches to access. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3473-5

    Article  PubMed  Google Scholar 

  • Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., et al. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912–915.

    Article  PubMed  Google Scholar 

  • Feinberg, E., Augustyn, M., Broder-Fingert, S., Bennett, A., Weitzman, C., Kuhn, J., et al. (2021). Effect of family navigation on diagnostic ascertainment among children at risk for autism: A randomized clinical trial from DBPNet. JAMA Pediatrics, 175(3), 243–250. https://doi.org/10.1001/jamapediatrics.2020.5218

    Article  PubMed  Google Scholar 

  • Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Suarez, Z. F. C., Chen, N., et al. (2014). Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40–46.

    Article  PubMed  Google Scholar 

  • Feinberg, E., Kuhn, J., Eilenberg, J. S., Levinson, J., Patts, G., Cabral, H., & Broder-Fingert, S. (2020). Improving family navigation for children with autism: A comparison of two pilot randomized controlled trials. Academic Pediatrics, 21, 265.

    Article  PubMed  PubMed Central  Google Scholar 

  • Finke, E., Drager, K., & Serpentine, E. C. (2015). “It’s not humanly possible to do everything”: Perspectives on intervention decision-making processes of parents of children with autism spectrum disorders. Perspectives on Language Learning and Education, 22(1), 13–21. https://doi.org/10.1044/lle22.1.13

    Article  Google Scholar 

  • Flores, G. (2010). Racial and ethnic disparities in the health and health care of children. Pediatrics, 125(4), e979–e1020.

    Article  PubMed  Google Scholar 

  • Gonzalez-Barrera, A. (2020). The ways Hispanics describe their identity vary across immigrant generations. Pew Research Center.

    Google Scholar 

  • Gordillo, M. L., Chu, A., & Long, K. (2020). Mothers’ adjustment to autism: Exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45(8), 877–886. https://doi.org/10.1093/jpepsy/jsaa044

    Article  PubMed  Google Scholar 

  • Guerrero, A. D., Rodriguez, M. A., & Flores, G. (2011). Disparities in provider elicitation of parents’ developmental concerns for US children. Pediatrics, 128(5), 901–909.

    Article  PubMed  Google Scholar 

  • Guest, G., MacQueen, K., & Namey, E. (2012). Applied thematic analysis. Sage Publications.

    Book  Google Scholar 

  • Harrington, C., & Kang, T. (2016). Disparities in service use and expenditures for people with intellectual and developmental disabilities in California in 2005 and 2013. Intellectual and Developmental Disabilities, 54(1), 1–18. https://doi.org/10.1352/1934-9556-54.1.1

    Article  PubMed  Google Scholar 

  • Hennink, M., Hutter, I., & Bailey, A. (2020). Qualitative research methods. Sage Publications.

    Google Scholar 

  • Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462.

    Article  PubMed  Google Scholar 

  • Kilbourne, A. M., Switzer, G., Hyman, K., Crowley-Matoka, M., & Fine, M. J. (2006). Advancing health disparities research within the health care system: A conceptual framework. American Journal of Public Health, 96(12), 2113–2121. https://doi.org/10.2105/AJPH.2005.077628

    Article  PubMed  PubMed Central  Google Scholar 

  • Lopez, K., Xu, Y., Magana, S., & Guzman, J. (2018). Mother’s reaction to autism diagnosis: A qualitative analysis comparing Latino and White parents. Journal of Rehabilitation, 84(1), 41.

    Google Scholar 

  • López, O. S. (2015). Averting another lost decade: Moving Hispanic families from outlier to mainstream family research. Journal of Family Issues, 36(1), 133–159. https://doi.org/10.1177/0192513X13488583

    Article  Google Scholar 

  • Maenner, M. J., Shaw, K. A., & Baio, J. (2020). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1.

    Article  PubMed Central  Google Scholar 

  • Magaña, S., Lopez, K., Salkas, K., Iland, E., Morales, M. A., Garcia Torres, M., Zeng, W., & Machalicek, W. (2020). A randomized waitlist-control group study of a culturally tailored parent education intervention for Latino parents of children with ASD. Journal of Autism and Developmental Disorders, 50(1), 250–262. https://doi.org/10.1007/s10803-019-04252-1

    Article  PubMed  Google Scholar 

  • McBain, R. K., Kareddy, V., Cantor, J. H., Stein, B. D., & Yu, H. (2020). Systematic review: United States workforce for autism-related child healthcare services. Journal of the American Academy of Child & Adolescent Psychiatry, 59(1), 113–139. https://doi.org/10.1016/j.jaac.2019.04.027

    Article  Google Scholar 

  • Morse, J. M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods, 1(2), 13–22.

    Article  Google Scholar 

  • Mulvaney-Day, N. E., Alegria, M., & Sribney, W. (2007). Social cohesion, social support, and health among Latinos in the United States. Social Science & Medicine, 64(2), 477–495.

    Article  Google Scholar 

  • QSR International Pty Ltd. (2018). NVivo (Version 12). https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home

  • Reyes, N. M., Lindly, O. J., Chavez, A. E., Folan, A., Macias, K., Smith, K. A., Reynolds, A., & Zuckerman, K. (2018). Maternal beliefs about autism: A link between intervention services and autism severity in White and Latino mothers. Research in Autism Spectrum Disorders, 51, 38–48. https://doi.org/10.1016/j.rasd.2018.04.001

    Article  PubMed  PubMed Central  Google Scholar 

  • Serpentine, E. C., Tarnai, B., Drager, K. D. R., & Finke, E. H. (2011). Decision making of parents of children with autism spectrum disorder concerning augmentative and alternative communication in Hungary. Communication Disorders Quarterly, 32(4), 221–231. https://doi.org/10.1177/1525740109353938

    Article  Google Scholar 

  • Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://doi.org/10.1007/s40615-019-00575-y

    Article  PubMed  PubMed Central  Google Scholar 

  • Wilson, M., Hamilton, D., Whelan, T., & Pilkington, P. (2018). A systematic review of factors related to parents’ treatment decisions for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 48, 17–35. https://doi.org/10.1016/j.rasd.2018.01.004

    Article  Google Scholar 

  • Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in Latino and non-Latino White families. Pediatrics, 139(5), e20163010. https://doi.org/10.1542/peds.2016-3010

    Article  PubMed  PubMed Central  Google Scholar 

  • Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 445–453.

    Article  PubMed  PubMed Central  Google Scholar 

  • Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014b). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics, 35(8), 522–532. https://doi.org/10.1097/DBP.0000000000000091

    Article  PubMed  PubMed Central  Google Scholar 

  • Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014a). Latino parents’ perspectives of barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308. https://doi.org/10.1016/j.acap.2013.12.004

    Article  PubMed  PubMed Central  Google Scholar 

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Authors and Affiliations

  1. Department of Psychological & Brain Sciences, Boston University, Boston, MA, USA

    Monica L. Gordillo & Kristin Long

  2. Department of Pediatrics, Boston Medical Center, Boston, MA, USA

    Andrea Chu

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  1. Monica L. Gordillo
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  2. Andrea Chu
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Andrea Chu and Kristin Long contributed to this study’s conception and design. All authors contributed to material preparation, data collection, and data analysis. All authors contributed to writing and editing this manuscript. All authors read and approved the final manuscript.

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Correspondence to Monica L. Gordillo.

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Gordillo, M.L., Chu, A. & Long, K. Differences in Processes Underlying Autism Service Engagement Among Latina and Non-Latina Mothers. J Autism Dev Disord 52, 5440–5450 (2022). https://doi.org/10.1007/s10803-021-05403-z

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