Identifying why Asian American and Pacific Islanders are Underdiagnosed with Autism
Autism spectrum disorder (ASD) is a developmental disability that causes restrictions in social communication and interaction and restricted or repetitive behaviors or interests, depending on the individual. ASD can be diagnosed as early as two years of age, yet many autistic people receive their diagnosis at a later age, resulting in higher severity of symptoms, including higher levels of mental health and social difficulties. Not only so, once ASD is diagnosed, but early intervention has also consistently reduced the need for intensive and costly services in later life (Mandy et al., 2022). Despite the growing awareness of ASD in the United States, cultural minorities are underdiagnosed and diagnosed at a later age compared to other ethnicities (Welterlin & LaRue, 2007)
For instance, even though the development of tools to accurately diagnose ASD in very young children is developed, studies have found among the cultural minorities, Asian Americans and Pacific Islanders (AAPI) affected with ASD are heavily underdiagnosed. According to a Center for Disease Control and Prevention (CDC) report in 2016, AAPI individuals make up five percent of the three hundred thousand children studied who had ASD, despite AAPI being the fastest grouping racial or ethnic group in the United States.
Underdiagnosis or Late diagnosis of ASD stems from multiple challenges, such as language, socioeconomic and cultural barriers that cause the AAPI community to receive lower quality support compared to other groups (Welterlin & LaRue, 2007).
For example, a barrier that continues to cause underdiagnosis of AAPI individuals with ASD is the cultural difference. Because in AAPI cultures, ASD is highly stigmatized. For example, in many East and Southeast Asian cultures, an ASD diagnosis is linked with failure to uphold certain values and harm to the family's reputation. As a result, the societal stigma within their AAPI community can affect AAPI families' reporting of their child's symptoms (Ilias et al., 2018). As the child's symptoms go unreported, AAPI families are likely to be directed to indigenous healing practices, like religious healers, herbal medicine, and acupuncture (Shorey et al., 2020). Consequentially, when AAPI families are directed to a healthcare professional who is unfamiliar with their cultural beliefs and practices, this can lead to decrease trust in the professional's ability to help their child. However, healthcare professionals who aim to understand the families' beliefs build trust with the parents and are likely to build an accurate picture of the child with ASD as well as encourage the parents to develop medically supported interventional plans (Jegtheesan, 2009).
The cultural difference that AAPI families affected by ASD face not only affects the healthcare service they receive but also how their children are likely to be diagnosed. Multiple major autism screeners and diagnostic tools focus on Western views and are not adapted for AAPIs' cultural and language differences (La Roche & D'Angelo, 2018). For example, main ASD symptoms, such as difficulty in social communication and repetitive and restricted behaviors, are seen differently within subgroups of AAPI cultures, leading to underdiagnosis. More specifically, ASD indicators such as lack of interest in other children can be perceived by Japanese families as modesty or shyness. Repetition and sameness in speech patterns are a part of the Chinese language. Therefore Chinese-speaking families view these behaviors as normal communication. And Korean families see unusual finger movement near the child's face as culturally appropriate and playful (Seung et al., 2015). Conversely, symptoms such as difficulty sensing another's disinterest or intentions are more seen universally. These cultural differences can lead to the child's symptoms not being diagnosed due to the parent's explanations and expectations of their children's behavior being influenced by their culture. Yet currently, in most ASD diagnosis screenings, symptoms are examined independently of their cultural context (La Roche, Bush & D'Angelo, 2018). Due to both cultural differences and language barriers, AAPI families have expressed misdiagnosis or later diagnosis of ASD. For example, in a study done to understand the experiences of Chinese-American and Korean-American families affected by ASD, parents expressed that health professionals failed to conduct diagnosis screenings when they reported developmental delays in their children. Here, the most common diagnostic barrier was the stress of the complex diagnostic process and difficulty in navigating the healthcare systems. Not only so, but parents who had limited English proficiency also reported poor quality and unavailability of interpreters. Healthcare professionals' active engagement with parents' concerns is essential to promote early diagnosis, yet many AAPI families fail to receive this service (Kim, 2022).
Language barriers present difficulties for AAPIs to receive service in an ongoing manner. Likewise, the inability to access health professionals who speak their language or the ability to access materials not translated into their native languages prevent AAPI families' from completing screening paperwork and parent interviews as well as understanding ASD in a thorough manner (Sakai et al., 2019).
The language and cultural barriers listed above are also increased by the lack of research focused on AAPI families' experience with ASD. Only sufficient literature exists to report the proportion of AAPI individuals with ASD in the United States, yet there is a lack of attention on the experiences of AAPI families and their ability to access services. A review of current literature conveys that AAPI individuals are underrepresented in the research on disability, stemming from the tendency of AAPI ethnicities to be treated as monolithic. AAPI represents the fastest-growing ethnicity in the United States, yet the diversity within this population is often overlooked. The tendency of researchers to conceptualize AAPI as a monolithic group obscures the heterogenous sociocultural experiences that impact help-seeking behaviors, access to diagnosis, and follow-through of treatment services (Budiman & Ruiz, 2021). Not only so, but the failure to recognize the heterogeneity of the AAPI community in research also feeds into the tendency to disregard the difficulties encountered by the less-privileged subgroups within AAPI (Hasnain et al., 2020).
Due to limited research and scarcity of individual narratives, AAPI remains an underserved population within regions of the United States. ASD can be diagnosed as early as two years of age, yet many AAPI autistic individuals are undiagnosed or diagnosed at a later age, leading to higher severity of symptoms and more difficulty in social functioning at an older age (Mandy et al., 2022).
References:
Aggarwal, N. K., Glass, A., Tirado, A., Boiler, M., Nicasio, A., Alegría, M., Wall, M., & LewisFernández, R. (2014). The development of the DSM-5 cultural formulation interviewFidelity Instrument (CFI-Fi): A pilot study. Journal of Health Care for the Poor and Underserved, 25(3), 1397–1417. https://doi.org/10.1353/hpu.2014.0132
Al Maskari, T. S., Melville, C. A., & Willis, D. S. (2018). Systematic review: Cultural adaptation and feasibility of screening for autism in non-English speaking countries. International Journal of Mental Health Systems, 12(1). https://doi.org/10.1186/s13033-018-0200-8
Baller, J. B., & Barry, C. L. (2016). State variation in school-based disability services financed by Medicaid. Journal of Disability Policy Studies, 27(3), 148–157. https://doi.org/10.1177/1044207316637545
Bilaver, L. A., Sobotka, S. A., & Mandell, D. S. (2020). Understanding racial and ethnic disparities in autism-related service use among Medicaid-enrolled children. Journal of Autism and Developmental Disorders, 51(9), 3341–3355. https://doi.org/10.1007/s10803- 020-04797-6
Budiman, A., & Ruiz, N. G. (2022, October 10). Key facts about Asian Americans, a diverse and growing population. Pew Research Center. Retrieved December 19, 2022, from https://www.pewresearch.org/fact-tank/2021/04/29/key-facts-about-asian-americans/
Hasnain, R., Fujiura, G. T., Capua, J. E., Bui, T. T., & Khan, S. (2020). Disaggregating the Asian “other”: Heterogeneity and methodological issues in research on Asian Americans with disabilities. Societies, 10(3), 58. https://doi.org/10.3390/soc10030058
Huerta, M., & Lord, C. (2012). Diagnostic evaluation of autism spectrum disorders. Pediatric Clinics of North America, 59(1), 103–111. https://doi.org/10.1016/j.pcl.2011.10.018
Jarvis, G. E., Kirmayer, L. J., Gómez-Carrillo, A., Aggarwal, N. K., & Lewis-Fernández, R. (2020). Update on the Cultural Formulation Interview. FOCUS, 18(1), 40–46. https://doi.org/10.1176/appi.focus.20190037
La Roche, M. J., Bush, H. H., & D'Angelo, E. (2018). The assessment and treatment of autism spectrum disorder: A cultural examination. Practice Innovations, 3(2), 107–122. https://doi.org/10.1037/pri0000067
La Roche, M. J., Fuentes, M. A., & Hinton, D. (2015). A cultural examination of the DSM-5: Research and clinical implications for cultural minorities. Professional Psychology: Research and Practice, 46(3), 183–189. https://doi.org/10.1037/a0039278
Mayk, M. (2021, June 21). Let's talk price: How much does research cost? Market Connections. Retrieved December 19, 2022, from https://www.marketconnectionsinc.com/lets-talkprice-how-much-does-research-cost/
Nguyen, P. H., Ocansey, M. E., Miller, M., Le, D. T., Schmidt, R. J., & Prado, E. L. (2019). The reliability and validity of the social responsiveness scale to measure autism symptomology in Vietnamese children. Autism Research, 12(11), 1706–1718. https://doi.org/10.1002/aur.2179
Perera, H., Jeewandara, K. C., Seneviratne, S., & Guruge, C. (2017). Culturally adapted pictorial screening tool for autism spectrum disorder: A new approach. World Journal of Clinical Pediatrics, 6(1), 45. https://doi.org/10.5409/wjcp.v6.i1.45
Sakai, C., Mulé, C., LeClair, A., Chang, F., Sliwinski, S., Yau, Y., & Freund, K. M. (2019). Parent and provider perspectives on the diagnosis and management of autism in a Chinese immigrant population. Journal of Developmental & Behavioral Pediatrics, 40(4), 257–265. https://doi.org/10.1097/dbp.0000000000000660
Scarpa, A., Reyes, N. M., Patriquin, M. A., Lorenzi, J., Hassenfeldt, T. A., Desai, V. J., & Kerkering, K. W. (2013). The modified checklist for autism in toddlers: Reliability in a diverse rural American sample. Journal of Autism and Developmental Disorders, 43(10), 2269–2279. https://doi.org/10.1007/s10803-013-1779-x
Seung, H. K., Ji, J., Kim, S.-J., Sung, I., Youn, Y.-A., Hong, G., Lee, H., Lee, Y. H., Lee, H., & Youm, H. K. (2015). Examination of the Korean modified checklist of autism in toddlers: Item response theory. Journal of Autism and Developmental Disorders, 45(9), 2744–2757. https://doi.org/10.1007/s10803-015-2439-0
Shorey, S., Ng, E. D., Haugan, G., & Law, E. (2019). The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis. Autism, 24(3), 591– 604. https://doi.org/10.1177/1362361319886513
Skinner, D., & Weisner, T. S. (2007). Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 302–312. https://doi.org/10.1002/mrdd.20170
Welterlin, A., & LaRue, R. H. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22(7), 747–760. https://doi.org/10.1080/09687590701659600
By: Anh Ngo (she/her) a college student in Boston, MA. She likes to eat a kiwi everyday.
