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Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia

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Abstract

Although it is well-documented that families of children with autism in developed nations report hardships, few researchers have focused on families who live in less-developed, low-resource settings. Using five focus groups with 30 parents of children with autism in Mongolia, a low- resource setting, the purpose of this study was to provide detailed accounts of their experiences, challenges, and needs. Participants reported severe challenges related to raising their children with autism in their country. Parents shared barriers related to the limited availability of services and support, exacerbated financial burdens, and a lack of enforcement of relevant laws. Parents also shared their perceived needs including more services for their children, more sustainable training and coaching programs for parents, and parents’ collective advocacy.

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References

  • An, S., Chan, C. K., & Kaukenova, B. (2020). Families in transition: Parental perspectives of support and services for children with autism in Kazakhstan. International Journal of Disability, Development and Education, 67(1), 28–44.

    Article  Google Scholar 

  • Asian Development Bank. (2019). Mongolia. https://www.adb.org/countries/mongolia/main

  • 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. (1979). The ecology of human development. Harvard: Harvard University Press.

    Google Scholar 

  • Burke, M. M., & Sandman, L. (2017). The effectiveness of a parent legislative advocacy program. Journal of Policy and Practice in Intellectual Disabilities, 14(2), 138–145.

    Article  Google Scholar 

  • Centers for Disease Control and Prevention. (2020). Prevalence of Autism Spectrum Disorder among children aged 8 years —Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. Morbidity and Mortality Weekly Report, 69, 1–12. https://doi.org/10.15585/mmwr.ss6904a1.

    Article  Google Scholar 

  • Chataika, T., Mckenzie, J. A., Swart, E., & Lyner-Cleophas, M. (2012). Access to education in Africa: Responding to the United Nations convention on the rights of persons with disabilities. Disability & Society, 27(3), 385–398.

    Article  Google Scholar 

  • de Leeuw, A., Happé, F., & Hoekstra, R. A. (2020). A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Research. https://doi.org/10.1002/aur.2276.

    Article  PubMed  Google Scholar 

  • Desai, M. U., Divan, G., Wertz, F. J., & Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49(3–4), 613–637.

    Article  Google Scholar 

  • Disabled People’s Organizations of Mongolia [DPOM]. (2015). Implementation of the UN Convention on the Rights of Persons with Disabilities in Mongolia. www.disabilitycouncilinternational.org/INT_CRPD_ICO_MNG_19556_E

  • Divan, G., Hamdani, S. U., Vajartkar, V., Minhas, A., Taylor, C., Aldred, C., et al. (2015). Adapting an evidence-based intervention for autism spectrum disorder for scaling up in resource-constrained settings: The development of the PASS intervention in South Asia. Global Health Action, 8(1), 272–278.

    Article  Google Scholar 

  • Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190–200.

    Article  Google Scholar 

  • Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., et al. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179.

    Article  Google Scholar 

  • Goedeke, S., Shepherd, D., Landon, J., & Taylor, S. (2019). How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism. Research in Autism Spectrum Disorders, 60, 36–47.

    Article  Google Scholar 

  • Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Kihara, M., Vijver, F. V., & Abubakar, A. (2016). Challenges and coping strategies of parents of children with autism on the Kenyan coast. Rural and Remote Health, 16(2), 3517.

    PubMed  PubMed Central  Google Scholar 

  • Guler, J., de Vries, P. J., Seris, N., Shabalala, N., & Franz, L. (2018). The importance of context in early autism intervention: A qualitative South African study. Autism, 22(8), 1005–1017.

    Article  Google Scholar 

  • Hastings, R. P., Kovshoff, H., Ward, N. J., Degli Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35(5), 635–644.

    Article  Google Scholar 

  • Heys, M., Alexander, A., Medeiros, E., Tumbahangphe, K. M., Gibbons, F., Shrestha, R., et al. (2016). Understanding parents’ and professionals’ knowledge and awareness of autism in Nepal. Autism, 21(4), 436–449.

    Article  Google Scholar 

  • Juneja, M., Mukherjee, S. B., Sharma, S., Jain, R., Das, B., & Sabu, P. (2012). Evaluation of a parent-based behavioral intervention program for children with autism in a low-resource setting. Journal of Pediatric Neurosciences, 7(1), 16–18.

    Article  Google Scholar 

  • Koffer Miller, K. H., Mathew, M., Nonnemacher, S. L., & Shea, L. L. (2018). Program experiences of adults with autism, their families, and providers: Findings from a focus group study. Autism, 22(3), 345–356. https://doi.org/10.1177/1362361316679000.

    Article  PubMed  Google Scholar 

  • Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), 520–529.

    Article  Google Scholar 

  • Lee, J. D., & Meadan, H. (2020). Parent-mediated interventions for children with ASD in low-resource settings: A scoping review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-020-00218-7.

    Article  Google Scholar 

  • Llewellyn, G., Emerson, E., Madden, R., & Honey, A. (2012). The well-being of children with disabilities in the Asia-Pacific region: Analysis of UNICEF MICS 3 survey data from Bangladesh, Lao PDR, Mongolia and Thailand. The University of Sydney, Centre for Disability Research and Policy. https://ses.library.usyd.edu.au/bitstream/handle/2123/13548/asia-pacific-mics-2012.pdf?sequence=1

  • Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77(1), 7–36.

    Article  Google Scholar 

  • Mongolia National Federation of the Blind (MNFB). (2014). Implementation of the UN Convention on the Rights of People with Disabilities in Mongolia. http://www.disabilitycouncilinternational.org/INT_CRPD_ICO_MNG_18158_E

  • Nyumba, T., Wilson, K., Derrick, C. J., & Mukherjee, N. (2018). The use of focus group discussion methodology: Insights from two decades of application in conservation. Methods in Ecology and Evolution, 9(1), 20–32.

    Article  Google Scholar 

  • Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745–762.

    PubMed  PubMed Central  Google Scholar 

  • Patton, M. Q. (2014). Qualitative research and evaluation methods: Integrating theory and practice. Los Angeles: Sage Publications.

    Google Scholar 

  • Raulston, T. J., Hieneman, M., Caraway, N., Pennefather, J., & Bhana, N. (2019). Enablers of behavioral parent training for families of children with autism spectrum disorder. Journal of Child and Family Studies, 28(3), 693–703. https://doi.org/10.1007/s10826-018-1295-x.

    Article  Google Scholar 

  • Reichow, B., Servili, C., Yasamy, M. T., Barbui, C., & Saxena, S. (2013). Non-specialist psychosocial interventions for children and adolescents with intellectual disability or lower-functioning autism spectrum disorders: A systematic review. Public Library of Science Medicine, 10(12), e1001572. https://doi.org/10.1371/journal.pmed.1001572.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ruparelia, K., Abubakar, A., Badoe, E., Bakare, M., Visser, K., Chugani, D. C., et al. (2016). Autism Spectrum Disorders in Africa: Current challenges in identification, assessment, and treatment. Journal of Child Neurology, 31(8), 1018–1026. https://doi.org/10.1177/0883073816635748.

    Article  PubMed  PubMed Central  Google Scholar 

  • Samadi, S. A., & McConkey, R. (2011). Autism in developing countries: Lessons from Iran. Autism Research and Treatment, 2011, 1–11. https://doi.org/10.1155/2011/145359.

    Article  Google Scholar 

  • Shogren, K. A., & Turnbull, H. R. (2014). Core concepts of disability policy, the convention on the rights of persons with disabilities, and public policy research with respect to developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11(1), 19–26.

    Article  Google Scholar 

  • Stewart, L. A., & Lee, L. C. (2017). Screening for autism spectrum disorder in low-and middle-income countries: A systematic review. Autism, 21(5), 527–539.

    Article  Google Scholar 

  • Strauss, A., & Corbin, J. (2015). Basics of qualitative research techniques. Los Angeles: Sage Publications.

    Google Scholar 

  • Tekola, B., Baheretibeb, Y., Roth, I., Tilahun, D., Fekadu, A., Hanlon, C., & Hoekstra, R. A. (2016). Challenges and opportunities to improve autism services in low-income countries: Lessons from a situational analysis in Ethiopia. Global Mental Health, 3, 1–11. https://doi.org/10.1017/gmh.2016.17.

    Article  Google Scholar 

  • Tilahun, D., Hanlon, C., Fekadu, A., Tekola, B., Baheretibeb, Y., & Hoekstra, R. A. (2016). Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: A cross-sectional facility-based survey. BMC Health Services Research, 16, 1–12.

    Article  Google Scholar 

  • Tomlinson, M., Yasamy, M. T., Emerson, E., Officer, A., Richler, D., & Saxena, S. (2014). Setting global research priorities for developmental disabilities, including intellectual disabilities and autism. Journal of Intellectual Disability Research, 58(12), 1121–1130.

    Article  Google Scholar 

  • United Nations Education and Science Cultural Organisation (UNESCO). (1994). The Salamanca Statement and Framework for Action on Special Needs Education. http://www.unesco.org/education/pdf/SALAMA_E.PDF

  • Wibeck, V., Dahlgren, M. A., & Öberg, G. (2007). Learning in focus groups: An analytical dimension for enhancing focus group research. Qualitative Research, 7(2), 249–267. https://doi.org/10.1177/1468794107076023.

    Article  Google Scholar 

  • World Health Organization. (2012). Developmental difficulties in early childhood: Prevention, early identification, assessment and intervention in low- and middle-income countries, a review. https://www.who.int/maternal_child_adolescent/documents/9789241503549.pdf

  • World Health Organization. (2013). Meeting report: Autism Spectrum Disorders and other developmental disorders: From raising awareness to building capacity. World Health Organization, Geneva, Switzerland. September 2013.

  • World Health Organization. (2018). Training parents to transform children’s lives. https://www.who.int/mental_health/maternal-child/PST/en/

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Acknowledgments

There was no funding for this study. We express our sincere gratitude to Mongolian parents who shared their lives with us, and the Autism Association of Mongolia for its logistical assistance across all aspects of this study.

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  1. Department of Special Education, University of Illinois at Urbana-Champaign, 1310 South 6th Street, Champaign, IL, 61820, USA

    James D. Lee & Hedda Meadan

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  1. James D. Lee
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  2. Hedda Meadan
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Both authors contributed to the study conception and design. Material preparation and data collection were performed by JDL. The first draft of the manuscript was written by JDL, and HM commented on all versions of the manuscript and made revisions. All authors read and approved the final manuscript.

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Correspondence to James D. Lee.

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Lee, J.D., Meadan, H. Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia. J Autism Dev Disord 51, 3586–3599 (2021). https://doi.org/10.1007/s10803-020-04818-4

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