Abstract
Research has repeatedly shown the positive effects of early diagnosis and intervention in improving the quality of life and symptom trajectory of individuals with autism spectrum disorder (ASD). Immigrant and racial/ethnic minority children are diagnosed with ASD at significantly older ages, and have access to interventions later than their White peers. Recent efforts to address diagnostic disparities have focused on universal ASD screening in pediatric primary care. However, little is known about immigrant families’ experiences with ASD screening and with navigating subsequent referrals after receiving a positive ASD screen. In the current study, we explored cultural influences on: mothers’ perceptions of child development and disability, communication with pediatric healthcare providers, and perceived benefits of Early Intervention services. We interviewed 26 mothers (14 US-born and 12 immigrant—representing twelve different nationalities) of children who screened positively for ASD in primary care but did not receive an ASD diagnosis after a formal evaluation (i.e., false positive ASD screen). Mothers completed semi-structured qualitative interviews that explored their perceptions of child development, experiences with the ASD screening and developmental evaluation process, and experiences with developmental services. Data were stratified by U.S. nativity and analyzed using applied thematic analysis. Immigrant mothers described different ways of monitoring child development than US-born mothers, and described a mismatch between their own views and the child development frameworks used in the U.S. Due to this mismatch, immigrant parents may be less likely to raise concerns to their pediatricians, and therefore may particularly benefit from routine screening. This paper uses data from a supplemental study to a larger clinical trial. The clinical trial registration number is NCT02359084.
Highlights
-
Immigrant families view child development as a process that unfolds uniquely for each child, therefore, monitoring development through milestones can be a new idea for culturally diverse families.
-
Immigrant children with elevated risk for ASD may be at higher risk for later identification of developmental delays if they are not screened at their well-child visits.
-
Culturally and linguistically accessible explanations of child development and disabilities can help immigrant families throughout the ASD screening process.
-
Immigrant families emphasize benefiting from family navigation and logistical support during the developmental evaluation process.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Barbaro, J., & Halder, S. (2016). Early identification of autism spectrum disorder: Current challenges and future global directions. Current Developmental Disorders Reports, 3(1), 67–74. https://doi.org/10.1007/s40474-016-0078-6.
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.
Bogenschutz, M. (2014). “We Find a Way”: Challenges and Facilitators for Health Care Access Among Immigrants and Refugees With Intellectual and Developmental Disabilities. Medical Care, S64–S70. https://doi.org/10.1097/MLR.0000000000000140
Campbell, J. M., Greenberg, D., Gallagher, P. A., Stoneman, Z., & Simmons, C. (2019). Knowledge of autism for parents of low income with low literacy: Description and relationship to child development knowledge. Advances in Neurodevelopmental Disorders, 3(1), 8–16. https://doi.org/10.1007/s41252-018-0079-z.
Carbone, P. S., Campbell, K., Wilkes, J., Stoddard, G. J., Huynh, K., Young, P. C., & Gabrielsen, T. P. (2020). Primary Care Autism Screening and Later Autism Diagnosis. Pediatrics (Evanston), 146(2), e20192314 https://doi.org/10.1542/peds.2019-2314.
Castleberry, A. (2014). NVivo 10 [software program]. Version 10. QSR International; 2012. https://doi.org/10.5688/ajpe78125.
Coulacoglou, C., & Saklofske, D. H. (2017). Psychometrics and Psychological Assessment: Principles and Applications. Academic Press.
Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58(7), 1323–1335. https://doi.org/10.1016/S0277-9536(03)00330-7.
Eilenberg, J. S., Kizildag, D., Blakey, A. O., Cardona, N. D., Oberoi, A., Broder-Fingert, S., & Long, K. A. (2022). Implications of Universal Autism Screening: Perspectives From Culturally Diverse Families With False-Positive Screens. Academic Pediatrics, 22(2), 279–288. https://doi.org/10.1016/j.acap.2021.12.025.
Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., Diaz Linhart, Y., Cesar Levesque, Z., Aebi, M., & Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912–915. https://doi.org/10.1176/appi.ps.201500162.
Feinberg, E., Augustyn, M., Broder-Fingert, S., Bennett, A., Weitzman, C., Kuhn, J., Hickey, E., Chu, A., Levinson, J., Sandler Eilenberg, J., Silverstein, M., Cabral, H. J., Patts, G., Diaz-Linhart, Y., Fernandez-Pastrana, I., Rosenberg, J., Miller, J. S., Guevara, J. P., Fenick, A. M., & Blum, N. J. (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.
Guest, G., MacQueen, K. M., & Namey, E. E. (2012). Applied thematic analysis. sage publications.
Gura, G. F., Champagne, M. T., & Blood-Siegfried, J. E. (2011). Autism spectrum disorder screening in primary care. Journal of Developmental & Behavioral Pediatrics, 32(1), 48–51. https://doi.org/10.1097/DBP.0b013e3182040aea.
Harris, B., Barton, E. E., & Albert, C. (2014). Evaluating autism diagnostic and screening tools for cultural and linguistic responsiveness. Journal of Autism and Developmental Disorders, 44(6), 1275–1287. https://doi.org/10.1007/s10803-013-1991-8.
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. https://doi.org/10.1177/1049732305276687.
Jegatheesan, B., Fowler, S., & Miller, P. J. (2010). From symptom recognition to services: How South Asian Muslim immigrant families navigate autism. Disability & Society, 25(7), 797–811. https://doi.org/10.1080/09687599.2010.520894.
Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their distrust of the health care system: healthcare for diverse populations. Journal of Cultural Diversity, 14(2), 56–60.
Lim, N., O’Reilly, M., Sigafoos, J., Lancioni, G. E., & Sanchez, N. J. (2020). A review of barriers experienced by immigrant parents of children with autism when accessing services. Review Journal of Autism and Developmental Disorders, 1–7. https://doi.org/10.1007/s40489-020-00216-9.
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(Suppl 2), S191–S197. https://doi.org/10.1542/peds.2012-0900R.
Martin-Herz S. P., Kemper T., Brownstein M., & McLaughlin J. F. Developmental screening with recent immigrant and refugee children. Available at: https://ethnomed.org/resource/developmental-screeningwith-recent-immigrant-and-refugeechildren/. Accessed 1 Dec 2020.
Morse, J. M. (1995). The significance of saturation. Qualitative Health Research, 5(2), 147–149. https://doi.org/10.1177/104973239500500201.
Nguyen, C. T., Krakowiak, P., Hansen, R., Hertz-Picciotto, I., & Angkustsiri, K. (2016). Sociodemographic Disparities in Intervention Service Utilization in Families of Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 46(12), 3729–3738. https://doi.org/10.1007/s10803-016-2913-3.
Nilses, Å., Jingrot, M., Linnsand, P., Gillberg, C., & Nygren, G. (2019). Experiences Of Immigrant Parents In Sweden Participating In A Community Assessment And Intervention Program For Preschool Children With Autism. Neuropsychiatric disease and treatment, 15, 3397–3410. https://doi.org/10.2147/NDT.S221908.
Pondé, M. P., & Rousseau, C. (2013). Immigrant children with autism spectrum disorder: The relationship between the perspective of the professionals and the parents’ point of view. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 22(2), 131–138.
Ravindran, N., & Myers, B. J. (2012). Cultural influences on perceptions of health, illness, and disability: a review and focus on autism. Journal of Child and Family Studies, 21(2), 311–319. https://doi.org/10.1007/s10826-011-9477-9.
Robins, D. L., Casagrande, K., Barton, M., Chen, C. M., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for Autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45. https://doi.org/10.1542/peds.2013-1813.
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 https://doi.org/10.1037/pri0000067.
Schmengler, H., Cohen, D., Tordjman, S., & Melchior, M. (2021). Autism spectrum and other neurodevelopmental disorders in children of immigrants: a brief review of current evidence and implications for clinical practice. Frontiers in Psychiatry, 12, 566368–566368. https://doi.org/10.3389/fpsyt.2021.566368.
Singh, J. S., & Bunyak, G. (2019). Autism disparities: a systematic review and meta-ethnography of qualitative research. Qualitative health research, 29(6), 796–808. https://doi.org/10.1177/1049732318808245.
Siu, A. L., Bibbins-Domingo, K., Grossman, D. C., Baumann, L. C., Davidson, K. W., Ebell, M., García, F. A., Gillman, M., Herzstein, J., Kemper, A. R., Krist, A. H., Kurth, A. E., Owens, D. K., Phillips, W. R., Phipps, M. G., & Pignone, M. P. (2016). Screening for autism spectrum disorder in young children: US preventive services task force recommendation statement. JAMA: the Journal of the American Medical Association, 315(7), 691–696. https://doi.org/10.1001/jama.2016.0018.
Solomon, O. (2010). Sense and the senses: anthropology and the study of autism. Annual Review of Anthropology, 39, 241–259.
Sritharan, B. & Koola, M. M. (2019). Barriers faced by immigrant families of children with autism: A program to address the challenges. Asian Journal of Psychiatry, 39, 53–57. https://doi.org/10.1016/j.ajp.2018.11.017.
Wallis, K. E., Davis Rivera, L. B., Guthrie, W., Bennett, A. E., Mandell, D. S. & Miller, J. S. (2021). Provider Responses to Positive Developmental Screening: Disparities in Referral Practices?. Journal of developmental and behavioral pediatrics: JDBP, 42(1), 23–31. https://doi.org/10.1097/DBP.0000000000000855.
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.
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308. https://doi.org/10.1016/j.acap.2013.12.004.
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), e201630. 10 https://doi.org/10.1542/peds.2016-3010.
Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., Mailloux, Z., Smith Roley, S., Wagner, S., Fein, D., Pierce, K., Buie, T., Davis, P. A., Newschaffer, C., Robins, D., Wetherby, A., Stone, W. L., Yirmiya, N., Estes, A., Hansen, R. L., McPartland, J. C., & Natowicz, M. R. (2015). Early Intervention for Children With Autism Spectrum Disorder Under 3 Years of Age: Recommendations for Practice and Research. Pediatrics, 136(Suppl 1), S60–S81. https://doi.org/10.1542/peds.2014-3667E.
Funding
National Institute of Mental Health. Award Number: 3R01MH104355-04S3.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare no competing interests.
Additional information
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Kizildag, D., Eilenberg, J.S., Blakey, A. et al. Family Experiences with the Autism Developmental Evaluation Process: Perspectives of Immigrant and US-Born Mothers. J Child Fam Stud 32, 926–937 (2023). https://doi.org/10.1007/s10826-022-02428-5
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10826-022-02428-5