Abstract
The number of Asian American children with autism is steadily increasing. Previous research reports that parents of children with autism experience higher stress compared with parents of typically developing children. Immigrant families of children with autism are particularly vulnerable to poor access to healthcare, social services, information, and other supports. This scoping review examined the current literature focused on East Asian American families raising children with autism, with an emphasis on study characteristics and overall findings. We identified nine articles that reported on the caregiving experiences of this population. Our review revealed that extant studies focused on East Asian families used limited research methods and small samples. The studies we reviewed found variations in the ways in which East Asian parents understand autism, navigate services, access available community and family supports, and experience stress.
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Al-Hassan, S., & Gardner, R. (2002). Involving Immigrant Parents of Students with Disabilities in the Educational Process. TEACHING Exceptional Children, 34(5), 52–58.
Alegria, M., Pescosolido, B. A., Williams, S., & Canino, G. (2011). Culture, race/ethnicity and disparities: fleshing out the socio-cultural framework for health services disparities. In B. A. Pescosolido, J. Marin, J. McLeod, & A. Rogers (Eds.), Handbook of the sociology of health, illness and healing: a blueprint for the 21st century (pp. 363–382). New York: Springer.
American Psychiatric Association (2018). What is Autism Spectrum Disorder. Retrieved Sep. 1, 2019, from https://www.psychiatry.org/patientsfamilies/autism/what-is-autism-spectrum-disorder#:~:text=Autism%20spectrum%20disorder%20(ASD)%20is,are%20different%20in%20each%20person.
Ballantyne, C., Gillespie-Smith, K., & Wilson, C. (2019). A comparison of knowledge and experience of autism spectrum disorder among teachers in the United Kingdom and China. International Journal of Disability, Development and Education. https://doi.org/10.1080/1034912X.2019.1674254.
Berglee, R. (2012). World regional geography: people, places, and globalization. Minneapolis: University of Minnesota Libraries Publishing.
Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders. Autism: The International Journal of Research and Practice, 8, 409–423.
Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N., & Taylor, R. (2012). Parent perspectives on community mental health services for children with autism spectrum disorders. Journal of Child and Family Studies, 21(4), 533–544. https://doi.org/10.1007/s10826-011-9506-8.
Center for Pan Asian Community Service (2009). I want equality… nothing more sharing the voices of Asian American caregivers of individuals with developmental disabilities in Georgia.
Chan, Chetwyn C. H., Lee, Tatia M. C., Yuen, Hon-Keung., & Chan, Fong. (2002). Attitudes toward people with disabilities between chinese rehabilitation and business students: An implication for practice. Rehabilitation Psychology, 47(3), 324–338.
Cho, S.-J., Singer, G. H. S., & Brenner, M. (Betsy). (2000). Adaptation and accommodation to young children with disabilities: a comparison of Korean and Korean American parents. Topics in Early Childhood Special Education, 20(4), 236.
Cho, S., Singer, G., & Brenner, B. (2003). A comparison of adaptation to childhood disability in Korean immigrant and Korean mothers. Focuson Autism and Other Developmental Disabilities, 18(1), 9–19.
DeLambo, D., Chung, W., & Huang, W. (2011). Stress and age: A comparison of asian american and non-asian american parents of children with developmental disabilities. Journal of Developmental and Physical Disabilities, 23(2), 129–141.
Fontil, L., & Petrakos, H. H. (2015). Transition to school: the experiences of Canadian and immigrant families of children with autism spectrum disorders. Psychology in the Schools, 52(8), 773–788. https://doi.org/10.1002/pits.21859.
Gabrenya Jr., W. K., & Hwang, K.-K. (1996). Chinese social interaction: harmony and hierarchy on the good earth. In M. H. Bond (Ed.), The handbook of Chinese psychology (pp. 309–321). New York: Oxford University Press.
Ghosh, S., & Magana, S. (2009). Chapter 6 a rich mosaic: emerging research on Asian families of persons with intellectual and developmental disabilities. International Review of Research in Mental Retardation, 37, 179–212.
Huang, M., & Zhou, Z. (2016). Perceived self-efficacy, cultural values, and coping styles among Chinese families of children with autism. International Journal of School and Educational Psychology, 4(2), 61–70.
Hughes, V. (2011). Research track down autism rates across the globe. Retrieved Sep. 1, 2019, from https://www.spectrumnews.org/news/researchers-track-down-autism-rates-across-the-globe/.
Kang-Yi, C. D., Grinker, R. R., Beidas, R., Agha, A., Russell, R., Shah, S. B., et al. (2018). Influence of community-level cultural beliefs about autism on families’ and professionals’ care for children. Transcultural Psychiatry, 55(5), 623–647. https://doi.org/10.1177/1363461518779831.
Kim, K.-H., Lee, Y., & Morningstar, M. E. (2007). An unheard voice: Korean American parents’ expectations, hopes, and experiences concerning their adolescent child’s future. Research & Practice for Persons with Severe Disabilities, 32(4), 253–264.
Kim, Y., Leventhal, B., Koh, Y., Fombonne, E., Laska, E., Lim, E., et al. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168(9), 904–912.
Kim, J. W., Kim, H. W., Moon, D. S., Lim, Y. S., McDougle, C. J., & Howe, Y. J. (2019). Comparison of services for autism spectrum disorder in Massachusetts with those in Seoul. Journal of Korean Medical Science, 34(43), e288. https://doi.org/10.3346/jkms.2019.34.e288.
Kogan, M. D., Vladutiu, C. J., Schieve, L. A., Ghandour, R. M., Blumberg, S. J., Zablotsky, B., et al. (2018). The prevalence of parent-reported autism spectrum disorder among US children. Pediatrics, 142(6), 1–11.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Pub. Co.
Lin, S. C., Yu, S. M., & Harwood, R. L. (2012). Autism spectrum disorders and developmental disabilities in children from immigrant families in the United States. Pediatrics, 130, S191–S197.
Lopez, G., Ruiz, N., & Patten, E. (2017). Key facts about Asian Americans, a diverse and growing population. Retrieved Sep. 1, 2019, from https://www.pewresearch.org/factank/2017/09/08/key-facts-about-asian-americans/.
Magana, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153.
Min, P. G. (1992). The structure and social functions of Korean immigrant churches in the United States. International Migration Review, 26(4), 1370–1394.
Minnes, P., Perry, A., & Weiss, J. A. (2015). Predictors of distress and well-being in parents of young children with developmental delays and disabilities: the importance of parent perceptions. Journal of Intellectual Disability Research, 59(6), 551–560. https://doi.org/10.1111/jir.12160.
Moodie-Dyer, A., Joyce, H. D., Anderson-Butcher, D., & Hoffman, J. (2014). Parent–caregiver experiences with the autism spectrum disorder service delivery system. Journal of Family Social Work, 17(4), 344–362. https://doi.org/10.1080/10522158.2014.903581.
Nurullah, A. S. (2013). “It’s really a roller coaster”: experience of parenting children with developmental disabilities. Marriage & Family Review, 49(5), 412–445. https://doi.org/10.1080/01494929.2013.768320.
Padden, C., & James, J. (2017). Stress among parents of children with and without autism spectrum disorder: a comparison involving physiological indicators and parent self-reports. Journal of Developmental and Physical Disabilities, 29(4), 567–586. https://doi.org/10.1007/s10882-017-9547-z.
Parette, P., Chuang, S.-J. L., & Huer, M. B. (2004). First-generation Chinese American families’ attitudes regarding disabilities and educational interventions. Focus on Autism and Other Developmental Disabilities, 19(2), 114–123. https://doi.org/10.1177/10883576040190020701.
Pastor-Cerezuela, G., Fernández-Andrés, M. I., Tárraga-Mínguez, R., & Navarro-Peña, J. M. (2016). Parental stress and ASD. Focus on Autism & Other Developmental Disabilities, 31(4), 300–311. https://doi.org/10.1177/1088357615583471.
Pew Research Center (2012). Asian Americans: A Mosaic of Faiths. Retrieved Sep. 1, 2019, from https://www.pewforum.org/2012/07/19/asianamericans-a-mosaic-of-faiths-overview/.
Pew Research Center (2012). Chapter 1: Portrait of Asian Americans. Retrieved Sep. 1, 2019, from https://www.pewsocialtrends.org/2012/06/19/chapter-1-portrait-of-asian-americans/.
Ravindran, N., & Myers, B. J. (2013). Beliefs and practices regarding autism in Indian families now settled abroad: an internet survey. Focus on Autism & Other Developmental Disabilities, 28(1), 44–53.
Rice, C., Nicholas, J., Baio, J., Pettygrove, S., Lee, L.-C., Van Naarden Braun, K., et al. (2010). Research paper: changes in autism spectrum disorder prevalence in 4 areas of the United States. Disability and Health Journal, 3, 186–201.
Ritzema, A. M., Lach, L. M., Nicholas, D., & Sladeczek, I. E. (2018). A model of well-being for children with neurodevelopmental disorders: parental perceptions of functioning, services, and support. Child: Care, Health and Development, 44(2), 240–248. https://doi.org/10.1111/cch.12541.
Robinson, S., Weiss, J. A., Lunsky, Y., & Ouellette, K. H. (2016). Informal support and burden among parents of adults with intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 29(4), 356–365. https://doi.org/10.1111/jar.12184.
Russell, S., & McCloskey, C. R. (2016). Parent perceptions of care received by children with an autism spectrum disorder. Journal of Pediatric Nursing, 31(1). https://doi.org/10.1016/j.pedn.2015.11.002.
Sanner, C. M., & Neece, C. L. (2018). Parental distress and child behavior problems: parenting behaviors as mediators. Journal of Child and Family Studies, 27(2), 591–601. https://doi.org/10.1007/s10826-017-0884-4.
Shaked, M. (2005). The social trajectory of illness: autism in the ultraorthodox community in Israel. Social Science & Medicine, 61, 2190–2200.
Sun, X., Allison, C., Wei, L., Matthews, F. E., Auyeung, B., Wu, Y. Y., et al. (2019). Autism prevalence in China is comparable to Western prevalence. Molecular Autism, 1, 1.
Suzuki, K., Hiratani, M., Mizukoshi, N., Hayashi, T., & Inagaki, M. (2018). Family resilience elements alleviate the relationship between maternal psychological distress and the severity of children’s developmental disorders. Research in Developmental Disabilities, 83, 91–98. https://doi.org/10.1016/j.ridd.2018.08.006.
Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19(5), 251–260. https://doi.org/10.1111/j.1745-7599.2007.00222.x.
U.S. Census Bureau (2010). The Asian Population: 2010. Retrieved Sep. 1, 2019, from https://www.census.gov/prod/cen2010/briefs/c2010br-11.pdf.
Wang, H.-T., & Casillas, N. (2013). Asian American parents’ experiences of raising children with autism: multicultural family perspective. Journal of Asian & African Studies (Sage Publications, Ltd.), 48(5), 594–606. https://doi.org/10.1177/0021909612467421.
Wang, H.-T., & West, E. A. (2016). Asian American immigrant parents supporting children with autism: perceptions of fathers and mothers. International Journal of Whole Schooling, 12(1), 1–21.
Wangyun, D. (2017). Invisible millions: China’s unnoticed disabled people. Retrieved Sep. 1, 2019, from https://www.sixthtone.com/news/1001285/invisible-millions-chinas-unnoticed-disabled-people.
Welterlin, A., & Larue, R. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22(7), 747–760.
Westbrook, M. T., Legge, V., & Pennay, M. (1993). Attitudes towards disabilities in a multicultural society. Social Science & Medicine, 36(5), 615–623. https://doi.org/10.1016/0277-9536(93)90058-C
Yan, K. K., Accordino, M. P., Boutin, D. L., & Wilson, K. B. (2014). Disability and the Asian culture. Journal of Applied Rehabilitation Counseling, 45(2), 4–8.
You, H.-K., & Rosenkoetter, S. E. (2014). Listening to Korean immigrant mothers: meanings of raising a child with a disability. Multiple Voices for Ethnically Diverse Exceptional Learners, 14(1), 30–41.
Zhou, T., Wang, Y., & Yi, C. (2018). Affiliate stigma and depression in caregivers of children with Autism Spectrum Disorders in China: Effects ofself-esteem, shame and family functioning. Psychiatry Research, 264, 260–265.
Zuckerman, K., Lindly, O., Reyes, N., Chavez, A., Macias, K., Smith, K., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in latino and non-latino white families. Pediatrics, 139(5), E20163010-3010v1.
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Kim, I., Wang, Y., Dababnah, S. et al. East Asian American Parents of Children with Autism: a Scoping Review. Rev J Autism Dev Disord 8, 312–320 (2021). https://doi.org/10.1007/s40489-020-00221-y
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DOI: https://doi.org/10.1007/s40489-020-00221-y