Disparities in Community-Based Resources for Grandparents Raising Children with Autism Spectrum Disorder: A Call for International Health Surveillance and Advocacy
Main Article Content
Abstract
Despite estimates that one percent of children, worldwide, have a diagnosis of Autism Spectrum Disorder, with prevalence rates as high as three percent of children in the US., coupled with increasing numbers of grandparents who are raising their grandchildren, either as custodial or non-custodial caregivers, limited information is available regarding the essential, community-based, autism spectrum-related services that these grandfamilies need. What we do know is that grandfamilies with children with Autism Spectrum Disorder in different nations, and among different states in the U.S., face significant disparities in the availability of community-based services, influenced in large part by public policies and stigma. This editorial reviews the available information regarding such disparities, and calls for international health surveillance in data collection and advocacy in service of changes in public policy designed to assist these grandfamilies, who serve as an essential societal safety set for many children with Autism Spectrum Disorder.
Keywords:
Custodial grandparent, grandfamilies, ASD, Autism, Editorial
Article Details
How to Cite
HILLMAN, Jennifer.
Disparities in Community-Based Resources for Grandparents Raising Children with Autism Spectrum Disorder: A Call for International Health Surveillance and Advocacy.
Medical Research Archives, [S.l.], v. 13, n. 8, aug. 2025.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/6857>. Date accessed: 06 dec. 2025.
doi: https://doi.org/10.18103/mra.v13i8.6857.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
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4. Hillman J, Anderson C. Custodial grandparents of children with Autism Spectrum Disorder. In: Volkmar FR, eds. Encyclopedia of Autism Spectrum Disorders. Springer; 2000. http://dx.doi.org/10.1007/978-1-4614-6435-8_102353-1
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9. Velott DL, Agbese E, Mandell D, Stein BD, Dick A.W, Yu H, Leslie DL. (2015). Medicaid 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder. Autism. 2016;20(4):473-482. https://doi.org/10.1177/1362361315590806
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16. Zaraska M. Moving for Autism Care. The Transmitter. 2021. Assessed July 13, 2025. Retrieved from https://www.thetransmitter.org/spectrum/moving-for-autism-care/
17. Ning M, Daniels J, Schwartz J, Dunlap K, Washington P, Kalantarian H, Du M, Wall DP. Identification and quantification of gaps in access to autism resources in the United States: An infodemiological study. J Med Internet Res. 2019;21(7):e13094. https://doi.org/10.2196/13094
18. Wang X, Zhai F, Wang Y. Interplay between tradition and modernity: Stress and coping experiences among parents of children with Autism in Beijing, China. Behav. Sci. 2023;13:814. http://dx.doi.org/10.3390/bs13100814.
19. Li J, Washington-Nortey M, Kifle TH, et al. The role of extended family members in the lives of autistic individuals and their parents: A systemic review and meta-synthesis. Clin Child Fam Psychol Rev. 2025;28:507-539. DOI: http://dx.doi.org/10.1007/s10567-025-00525-7
20. Salam S, Alhalal E. Affiliate stigma among caregivers of children with Autism Spectrum Disorder: The role of coping strategies and perceived social support. J Disabil Res. 2024;3(2). https://www.doi.org/10.57197/JDR-2024-0009
21. Tong J. Policy towards disabled persons in China: National and provincial regulations. Chinese Law & Government. 2017;49(5–6):265–274. https://doi.org/10.1080/00094609.2017.1403270
22. De Leeuw A, Happe F, Hoekstra RA. A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Res. 2020;13:1029-1050. https://doi-org.ezaccess.libraries.psu.edu/10.1002/aur.2276
23. Uddin MJ, & Ashrafun L. Parenting in context: Parents’ experience of caring for a child with ASD in Bangladesh. Int J Anthropol Ethnol. 2023;7:10. DOI: http://dx.doi.org/10.1186/s41257-023-00089-w
24. Waltz, M. (2023). From ‘pathological motherhood’ to ‘refrigerator mothers’. In: Autism: A social and medical history. Springer International. https://doi.org/10.1007/978-3-031-31015-7_5
25. Daley TC. From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine. 2004;58(7):1323–35. https://doi-org.ezaccess.libraries.psu.edu/10.1016/S0277-9536(03)00330-7
26. Jiang, X., Chen, X., Su, J. et al. Prevalence of autism spectrum disorder in mainland China over the past 6 years: A systematic review and meta-analysis. BMC Psychiatry. 2024;24:404. https://doi.org/10.1186/s12888-024-05729-9
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