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Latinx caregivers and autism identification: what we know a scoping review

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Pages 571-581 | Received 07 Dec 2021, Accepted 14 Aug 2022, Published online: 08 Sep 2022

References

  • American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders (DSM-5). Washington, DC: American Psychiatric Association Publishing. 
  • Angell, A. M., Frank, G. and Solomon, O. 2016. Latino families’ experiences with autism services. OTJR: Occupation, Participation and Health, 36, 195–203.
  • Angell, A. M. and Solomon, O. 2017. If I was a different ethnicity, would she treat me the same?’: Latino parents’ experiences obtaining autism services. Disability & Society, 32, 1142–1164.
  • Arksey, H. and O'Malley, L. 2005. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8, 19–32.
  • Blacher, J., Cohen, S. and Azad, G. 2014. In the eye of the beholder: reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8, 1648–1656.
  • Blacher, J., Stavropoulos, K. and Bolourian, Y. 2019. Anglo-Latino differences in parental concerns and service inequities for children at risk of autism spectrum disorder. Autism: The International Journal of Research and Practice, 23, 1554–1562.
  • Burke, M. M., Magaña, S., Garcia, M. and Mello, M. P. 2016. Brief report: the feasibility and effectiveness of an advocacy program for Latino families of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46, 2532–2538.
  • Burke, M. M., Rios, K., Garcia, M. and Magaña, S. 2018. Examining differences in empowerment, special education knowledge, and family–school partnerships among Latino and White families of children with autism spectrum disorder. International Journal of Developmental Disabilities, 66, 75–81.
  • Buzhardt, J., Rusinko, L., Heitzman-Powell, L., Trevino-Maack, S. and McGrath, A. 2016. Exploratory evaluation and initial adaptation of a parent training program for Hispanic families of children with autism. Family Process, 55, 107–122.
  • Casillas, N., Vigil, D.C. and Wang, H. 2017. Latino and non-Latino white parents' experiences raising their child with ASD: an exploratory study. The Qualitative Report, 22, 2173–2195.
  • Centers for Disease Control and Prevention. 2021. Autism and developmental disabilities monitoring (ADDM) network. Available through: https://www.cdc.gov/ncbddd/autism/addm-community-report/index.html
  • Chlebowski, C., Hurwich, ‐Reiss, E., Wright, B. and Brookman‐Frazee, L. 2020. Using stakeholder perspectives to guide systematic adaptation of an autism mental health intervention for Latinx families: a qualitative study. Journal of Community Psychology, 48, 1194–1214.
  • Christensen, D. L., Bilder, D. A., Zahorodny, W., Pettygrove, S., Durkin, M. S., Fitzgerald, R. T., Rice, C., Kurzius-Spencer, M., Baio, J. and Yeargin-Allsopp, M. 2016. Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network. Journal of Developmental & Behavioral Pediatrics, 37, 1–8.
  • Coffield, C. N., Spitalnik, D. M., Harris, J. F. and Jimenez, M. E. 2021. Exploring the experiences of families of Latino children newly diagnosed with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics: JDBP, 42, 711–716.
  • Cohen, S. R. and Miguel, J. 2018. Amor and social stigma: ASD beliefs among immigrant Mexican parents. Journal of Autism and Developmental Disorders, 48, 1995–2009.
  • Colbert, A. M., Webber, J. and Graham, R. 2017. Factors that influence autism knowledge in Hispanic cultures: a pilot study. Journal of Racial and Ethnic Health Disparities, 4, 156–164.
  • Colquhoun, H. L., Levac, D., O'Brien, K. K., Straus, S., Tricco, A. C., Perrier, L., Kastner, M. and Moher, D. 2014. Scoping reviews: time for clarity in definition, methods, and reporting. Journal of clinical epidemiology, 67, 1291–1294.
  • DeAngelis, T. 2015, March. In search of cultural competence. American Psychological Association. https://www.apa.org/monitor/2015/03/cultural-competence 
  • DuBay, M., Watson, L. R. and Zhang, W. 2018. In search of culturally appropriate autism interventions: perspectives of Latino caregivers. Journal of Autism and Developmental Disorders, 48, 1623–1639.
  • Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., DiGuiseppi, C., Nicholas, J. S., Kirby, R. S., Pinto-Martin, J. A. and Schieve, L. A. 2010. Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a US cross-sectional study. PLoS One, 5, e11551. 
  • Ferguson, A. and Vigil, D. C. 2019. A comparison of the ASD experience of low‐SES Hispanic and non‐Hispanic White parents. Autism Research: Official Journal of the International Society for Autism Research, 12, 1880–1890.
  • Flores, L. Z. 2013. Psychoeducational needs and concerns of immigrant Mexican parents of a child with autism [ProQuest Information and Learning]. In Dissertation Abstracts International: Section B: The Sciences and Engineering. (rayyan-791150917; Vol. 74, Issue 2). http://libproxy.sdsu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=trueanddb=psyhandAN=2013-99160-314andsite=ehost-liveandscope=site/
  • Gordillo, M. L., Chu, A. and Long, K. 2020. Mothers’ adjustment to autism: exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45, 877–886.
  • Guan, K., Lau, A. S., Zhang, A., Chlebowski, C., Haine-Schlagel, R. and Brookman-Frazee, L. 2019. In-session caregiver behaviors during evidence-based intervention delivery for children with ASD in community mental health services. Evidence-Based Practice in Child and Adolescent Mental Health, 4, 55–71.
  • Harris, B., Reyes, N. and Hill, T. 2020. Clinical and school identification and intervention for youth with ASD: Culturally and linguistically responsive interdisciplinary considerations. In: Interprofessional care coordination for pediatric autism spectrum disorder. Cham: Springer, pp. 185–207.
  • Hickey, E. J., Stransky, M., Kuhn, J., Rosenberg, J. E., Cabral, H. J., Weitzman, C., Broder- Fingert, S. and Feinberg, E. 2021. Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder. Autism: The International Journal of Research and Practice, 25, 1694–1708.
  • Huber, L. P. 2009. Challenging racist nativist framing: Acknowledging the community cultural wealth of undocumented Chicana college students to reframe the immigration debate. Harvard Educational Review, 79, 704–730.
  • Issarraras, A., Matson, J. L., Matheis, M. and Burns, C. O. 2019. Differences in developmental concerns of young children with autism spectrum disorder across racial/ethnic groups. Developmental Neurorehabilitation, 22, 174–179.
  • Jamison, J. M., Fourie, E., Siper, P. M., Trelles, M. P., George-Jones, J., Buxbaum Grice, A., Krata, J., Holl, E., Shaoul, J., Hernandez, B., Mitchell, L., McKay, M. M., Buxbaum, J. D. and Kolevzon, A. 2017. Examining the efficacy of a family peer advocate model for black and Hispanic caregivers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47, 1314–1322.
  • Jo, H., Schieve, L., Rice, C., Yeargin-Allsopp, M., Tian, L., Blumberg, S., Kogan, M. and Boyle, C. 2015. Age at autism spectrum disorder (ASD) diagnosis by race, ethnicity, and primary household language among children with special health care needs, United States, 2009-2010. Maternal and Child Health Journal, 19, 1687–1697.
  • Kasari, C., Gulsrud, A., Paparella, T., Hellemann, G. and Berry, K. 2015. Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. Journal of Consulting and Clinical Psychology, 83, 554–563.
  • Larios, R. and Zetlin, A. 2022. Bilingual and monolingual parents’ counterstories of the individualized education program (IEP) meeting. Urban Education, 57, 1207–1229.
  • Lim, N., O’Reilly, M. F., Londono, F. V. and Russell-George, A. 2021. Overcoming language barriers between interventionists and immigrant parents of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 51, 2876–2890.
  • Lopez, K. 2021. Commentary on “exploring the experiences of families of Latino children newly diagnosed with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics: JDBP, 42, 761–762.
  • Lopez, K., Xu, Y., Magaña, S., and and Guzman, J. 2018. Mother’s reaction to autism diagnosis: a qualitative analysis comparing Latino and White parents. Journal of Rehabilitation, 84, 41–50.
  • Luelmo, P., Kasari, C, and Fiesta Educativa, Inc 2021. Randomized pilot study of a special education advocacy program for Latinx/minority parents of children with autism spectrum disorder. Autism: The International Journal of Research and Practice, 25, 1809–1815.
  • Luelmo, P., Sandoval, Y. and Kasari, K. 2022. Undocumented Mexican mothers of children with autism: navigating the health care and educational service systems. International Journal of Developmental Disabilities, 68, 567–577.
  • Maenner, M. J., Shaw, K. A., Bakian, A. V., Bilder, D. A., Durkin, M. S., Esler, A., Furnier, S. M., Hallas, L., Hall-Lande, J., Hudson, A., Hughes, M. M., Patrick, M., Pierce, K., Poynter, J. N., Salinas, A., Shenouda, J., Vehorn, A., Warren, Z., Constantino, J. N., DiRienzo, M., Fitzgerald, R. T., Grzybowski, A., Spivey, M. H., Pettygrove, S., Zahorodny, W., Ali, A., Andrews, J. G., Baroud, T., Gutierrez, J., Hewitt, A., Lee, L.-C., Lopez, M., Mancilla, K. C., McArthur, D., Schwenk, Y. D., Washington, A., Williams, S. and Cogswell, M. E. 2021. Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2018. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C. : 2002), 70, 1–16.
  • Magaña, S., Lopez, K., Aguinaga, A. and Morton, H. 2013. Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51, 141–153.
  • Magaña, S., Lopez, K. and Machalicek, W. 2017. Parents taking action: a psycho- educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56, 59–74.
  • Magaña, S., Lopez, K., Salkas, K., Iland, E., Morales, M. A., Garcia Torres, M., Zeng, W. and 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, 250–262.
  • Magaña, S., Parish, S., Morales, M. A., Li, H. and Fujiura, G. 2016. Racial and ethnic health disparities among people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 54, 161–172.
  • Makino, A., Hartman, L., King, G., Wong, P. Y. and Penner, M. 2021. Parent experiences of autism spectrum disorder diagnosis: A scoping review. Review Journal of Autism and Developmental Disorders, 8, 267–284.
  • Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J.,   Nicholas, J. S.,  Pinto-Martin, J. A.,  Shattuck, P. T., Thomas, K. C., Yeargin-Allsopp, M.  and Kirby, R. S. 2009. Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493–498.
  • Martinez-Torres, K., Boorom, O., Nogueira Peredo, T., Camarata, S. and Lense, M. D. 2021. Using the ecological validity model to adapt parent-involved interventions for children with autism spectrum disorder in the Latinx community: a conceptual review. Research in Developmental Disabilities, 116, 104012.
  • Nevison, C. and Zahorodny, W. 2019. Race/ethnicity-resolved time trends in United States ASD prevalence estimates from IDEA and ADDM. Journal of Autism and Developmental Disorders, 49, 4721–4730.
  • Novoa, M. M. 2016. Exploring the experiences of Mexican families with an autism spectrum diagnosis [ProQuest Information and Learning]. In Dissertation Abstracts International Section A: Humanities and Social Sciences. (rayyan-791150937; Vol. 76, Issue 9). http://libproxy.sdsu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=trueanddb=psyhandAN=2016-26517-086andsite=ehost-liveandscope=site
  • Odom, S. L., Hall, L. J., Morin, K. L., Kraemer, B. R., Hume, K. A., McIntyre, N. S., Nowell, S. W., Steinbrenner, J. R., Tomaszewski, B., Sam, A. M. and DaWalt, L. 2021. Educational interventions for children and youth with autism: a 40-year perspective. Journal of Autism and Developmental Disorders, 51, 4354–4369.
  • Overton, T. 2011. Exploration of measures to predict group membership of autism spectrum disorders or non autism spectrum disorders for Hispanic children [ProQuest Information and Learning]. In Dissertation Abstracts International: Section B: The Sciences and Engineering. (rayyan-791150903; Vol. 72, Issue 1). http://libproxy.sdsu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=trueanddb=psyhandAN=2011-99140-069andsite=ehost-liveandscope=site
  • Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., McGuinness, L. A., Stewart, L. A., Thomas, J., Tricco, A. C., Welch, V. A., Whiting, P. and Moher, D. 2021. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ (Clinical Research ed.), 372, n71.
  • Peters, M. D., Godfrey, C. M., Khalil, H., McInerney, P., Parker, D. and Soares, C. B. 2015. Guidance for conducting systematic scoping reviews. JBI Evidence Implementation, 13, 141–146.
  • Ratto, A. B., Anthony, B. J., Pugliese, C., Mendez, R., Safer-Lichtenstein, J., Dudley, K. M., Kahn, N. F., Kenworthy, L., Biel, M., Martucci, J. L. and Anthony, L. G. 2017. Lessons learned: engaging culturally diverse families in neurodevelopmental disorders intervention research. Autism: The International Journal of Research and Practice, 21, 622–634.
  • Ratto, A. B., Reznick, J. S. and Turner-Brown, L. 2016. Cultural effects on the diagnosis of autism spectrum disorder among Latinos. Focus on Autism and Other Developmental Disabilities, 31, 275–283.
  • Reyes, N. M., Lindly, O. J., Chavez, A. E., Folan, A., Macias, K., Smith, K. A., Reynolds, A. and 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.
  • Rios, K., Aleman-Tovar, J. and Burke, M. M. 2020. Special education experiences and stress among Latina mothers of children with autism spectrum disorder (ASD). Research in Autism Spectrum Disorders, 73, 101534. 
  • Rios, K., Burke, M. M. and Aleman-Tovar, J. 2021. A Study of the families included in receiving better special education services (FIRME) project for Latinx families of children with autism and developmental disabilities. Journal of Autism and Developmental Disorders, 51, 3662–3676.
  • Salinas, C. and Lozano, A. 2019. Mapping and recontextualizing the evolution of the term Latinx: An environmental scanning in higher education. In Critical Readings on Latinos and Education. Routledge, pp. 216–235.
  • Salkas, K., Magaña, S., Marques, I. and Mirza, M. 2016. Spirituality in Latino families of children with autism spectrum disorder. Journal of Family Social Work, 19, 38–55.
  • Sandoval, C. 2021. Experiences of Latinx mothers raising a child with autism: a phenomenological approach to understanding cultural influence on treatment outcomes [ProQuest Information and Learning]. In Dissertation Abstracts International: Section B: The Sciences and Engineering. (rayyan-791150902; Vol. 82, Issue 4). http://libproxy.sdsu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=trueanddb=psyhandAN=2020-86254-194andsite=ehost-liveandscope=site
  • 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. and Kasari, C. 2019. Caregiver voices: cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6, 752–773.
  • Welterlin, A. and LaRue, R. H. 2007. Serving the needs of immigrant families of children with autism. Disability & Society, 22, 747–760.
  • Windham, G., Smith, K., Rosen, N., Anderson, M., Grether, J., Coolman, R. and Harris, S. 2014. Autism and developmental screening in a public, primary care setting primarily serving Hispanics: challenges and results. Journal of Autism and Developmental Disorders, 44, 1621–1632.
  • Yosso, T. J. 2005. Whose culture has capital? A critical race theory discussion of community cultural wealth. Race Ethnicity and Education, 8, 69–91.
  • Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N. and Reynolds, A. 2017. Disparities in diagnosis and treatment of autism in Latino and Non-Latino White families. Pediatrics, 139, e20163010.
  • Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T. and Nicolaidis, C. 2014a. Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics: JDBP, 35, 522–532.
  • Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T. and Nicolaidis, C. 2014b. Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14, 301–308.

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