Abstract
This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disabilities,34(2), 142–152. https://doi.org/10.1080/13668250902845202.
Anderson, C., & Butt, C. (2018). Young adults on the autism spectrum: The struggle for appropriate services. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3673-z.
Anderson, C., Lupfer, A., & Shattuck, P. T. (2018). Barriers to receipt of services for young adults with autism. Pediatrics,141(Suppl 4), S300–S305. https://doi.org/10.1542/peds.2016-4300G.
Baker-Ericzén, M. J., Brookman-Frazee, L., & Brodkin, E. S. (2018). Accelerating research on treatment and services for transition age youth and adults on the autism spectrum. Autism,22(1), 2–5. https://doi.org/10.1177/1362361317738646.
Blumberg, S. J., Bramlett, M. D., Kogan, M. D., Schieve, L. A., Jones, J. R., & Lu, M. C. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011–2012. National Center for Health Statistics Reports. Number 65. National Center for Health Statistics. Retrieved from, https://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf.
Boehm, T. L., & Carter, E. W. (2016). A systematic review of informal relationships among parents of individuals with intellectual disability or autism. Research and Practice for Persons with Severe Disabilities,41(3), 173–190. https://doi.org/10.1177/1540796916657339.
Braun, K. V. N., Christensen, D., Doernberg, N., Schieve, L., Rice, C., Wiggins, L.,… & Yeargin-Allsopp, M. (2015). Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, metropolitan Atlanta, 1991– 2010. PloS ONE, 10(4), e0124120.
Chamak, B., & Bonniau, B. (2016). Trajectories, long-term outcomes and family experiences of 76 adults with autism spectrum disorder. Journal of Autism and Developmental Disorders,46(3), 1084–1095. https://doi.org/10.1007/s10803-015-2656-6.
Christensen, D. L., Baio, J., Van Naarden Braun, K., Bilder, D., Charles, J., Constantino, J. N., et al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries,65(3), 1–23. https://doi.org/10.15585/mmwr.ss6503a1.
D’Astous, V., Glaser, K., & Lowton, K. (2016). Community support needs of adults with autism in mid and later life. In S. D. Wright (Ed.), Autism spectrum disorder in mid and later life (Part VI) (pp. 312–322). London: Jessica Kingsley Publishers.
DaWalt, L. S., Usher, L. V., Greenberg, J. S., & Mailick, M. R. (2017). Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism. Autism. https://doi.org/10.1177/1362361317709202.
Derguy, C., Michel, G., M’bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability,40(2), 156–166. https://doi.org/10.3109/13668250.2015.1023707.
Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L. G. (2019). Understanding service usage and needs for adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders,49(2), 556–568. https://doi.org/10.1007/s10803-018-3729-0.
Duggan, C., & Linehan, C. (2013). The role of ‘natural supports’ in promoting independent living for people with disabilities: A review of existing literature. British Journal of Learning Disabilities,41(3), 199–207. https://doi.org/10.1111/bld.12040.
Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy,41(1), 37–45. https://doi.org/10.1007/s10879-010-9160-2.
Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health,15(4), 271–283. https://doi.org/10.1002/nur.4770150406.
Government Accountability Office. (2015). Federal autism research: Updated information on funding from fiscal years 2008 through 2012 (GAO-15-583R). Washington, DC: GAO. Retrieved from, https://www.gao.gov/assets/680/671079.pdf.
Griffith, G. M., Totsika, V., Nash, S., & Hastings, R. P. (2012). ‘I just don’t fit anywhere’: Support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism,16(5), 532–546. https://doi.org/10.1177/1362361311405223.
Hines, M., Balandin, S., & Togher, L. (2014). The stories of older parents of adult sons and daughters with Autism: A balancing act. Journal of Applied Research in Intellectual Disabilities,27(2), 163–173. https://doi.org/10.1111/jar.12063.
Hodgetts, S., McConnell, D., Zwaigenbaum, L., & Nicholas, D. (2017). The impact of autism services on mothers’ psychological wellbeing. Child: Care, Health and Development,43(1), 18–30. https://doi.org/10.1111/cch.12398.
Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., et al. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders,47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5.
Interagency Autism Coordinating Committee (IACC). (2016). 2015 IACC summary of advances in autism spectrum disorder research. US Department of Health and Human Services Interagency Autism Coordinating Committee. Retrieved from, https://iacc.hhts.gov/publications/summaryof-advances/2015/.
Kanne, S. M., & Mazurek, M. O. (2011). Aggression in children and adolescents with ASD: Prevalence and risk factors. Journal of Autism and Developmental Disorders,41(7), 926–937. https://doi.org/10.1007/s10803-010-1118-4.
Khanlou, N., Haque, N., Mustafa, N., Vazquez, L. M., Mantini, A., & Weiss, J. (2017). Access barriers to services by immigrant mothers of children with autism in Canada. International Journal of Mental Health and Addiction,15(2), 239–259. https://doi.org/10.1007/s11469-017-9732-4.
Kuhn, J., Ford, K., & Dawalt, L. S. (2018). Brief report: Mapping systems of support and psychological well-being of mothers of adolescents with autism spectrum disorders. Journal of Autism and Developmental Disorders,48(3), 940–946. https://doi.org/10.1007/s10803-017-3381-0.
Lai, J. K., & Weiss, J. A. (2017). Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder. Autism Research,10(8), 1436–1447. https://doi.org/10.1002/aur.1786.
Leung, R. C., Pang, E. W., Anagnostou, E., & Taylor, M. J. (2018). Young adults with autism spectrum disorder show early atypical neural activity during emotional face processing. Frontiers in Human Neuroscience. https://doi.org/10.3389/fnhum.2018.00057.
Lunsky, Y., Hastings, R. P., Weiss, J. A., Palucka, A. M., Hutton, S., & White, K. (2017). Comparative effects of mindfulness and support and information group interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Journal of Autism and Developmental Disorders,47(6), 1769–1779. https://doi.org/10.1007/s10803-017-3099-z.
Marsack, C. N. (2016). An examination of quality of life of parents of adult children diagnosed with autism spectrum disorder. Wayne State University.
Marsack, C. N., & Hopp, F. P. (2018). Informal support, health, and burden among parents of adult children with autism. The Gerontologist, 59(6), 1112–1121. https://doi.org/10.1093/geront/gny082.
Marsack, C. N., & Perry, T. E. (2018). Aging in place in every community: Social exclusion experiences of parents of adult children with autism spectrum disorder. Research on Aging,40(6), 535–557. https://doi.org/10.1177/0164027517717044.
Marsack, C. N., & Samuel, P. S. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism and Developmental Disorders, 47(8), 2378–2389. https://doi.org/10.1007/s10803-017-3157-6.
Marsack-Topolewski, C. N., & Graves, J. M. (2019). “I worry about his future!” Challenges to future planning for adult children with ASD. Journal of Family Social Work. https://doi.org/10.1080/10522158.2019.1578714.
Mendoza, T. S., & Dickson, G. L. (2010). Levels of stress among parents who have children diagnosed with autism in the United States-Mexico borders region. The Border Walking Journal, 8(1), 12–20. Retrieved from, http://alliance.education.nmsu.edu/files/2013/10/borderwalkingjournal-final.pdf#page=14.
Mitchell, P. H., Powell, L., Blumenthal, J., Norten, J., Ironson, G., Pitula, C. R., et al. (2003). A short social support measure for patients recovering from myocardial infarction: The ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabilitation,23(6), 398–403.
Müller, E., & Cannon, L. (2016). Parent perspectives on outcomes and satisfaction levels of young adults with autism and cognitive impairments. Focus on Autism and Other Developmental Disabilities,31(2), 92–103. https://doi.org/10.1177/1088357614528800.
Namkung, E. H., Greenberg, J. S., Mailick, M. R., & Floyd, F. J. (2018). Lifelong parenting of adults with developmental disabilities: Growth trends over 20 years in midlife and later life. American Journal on Intellectual and Developmental Disabilities,123(3), 228–240. https://doi.org/10.1352/1944-7558-123.3.228.
Nightingale, S. (2012). Autism spectrum disorders. Nature Reviews Drug Discovery,11, 745–746. https://doi.org/10.1038/nrd3892.
Novak, M., & Guest, C. (1989). Application of a multidimensional caregiver burden inventory. The Gerontologist,29(6), 798–803. https://doi.org/10.1093/geront/29.6.798.
Qualtrics©. (2019). Provo, Utah. Retrieved from, https://www.qualtrics.com.
Robinson, S., Weiss, J., Lunsky, Y., & Ouellette-Kuntz, H. (2016). Informal support and burden among parents of adults with intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities: JARID,29, 356–365. https://doi.org/10.1111/jar.12184.
Roux, A. M., Rast, J. E., Anderson, K. A., & Shattuck, P. T. (2017). National autism indicators report: Developmental disability services and outcomes in adulthood. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University. Retrieved from, file://C:/Users/owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Natl%20Autism%20Indicators%20Report%202017_Final%20(1).pdf.
Rutman, D., & Hubberstey, C. (2016). Is anybody there? Informal supports accessed and sought by youth from foster care. Children and Youth Services Review,63, 21–27. https://doi.org/10.1016/j.childyouth.2016.02.007.
Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders,42(9), 1818–1826. https://doi.org/10.1007/s10803-011-1420-9.
Turcotte, P., Mathew, M., Shea, L. L., Brusilovskiy, E., & Nonnemacher, S. L. (2016). Service needs across the lifespan for individuals with autism. Journal of Autism and Developmental Disorders,46(7), 2480–2489. https://doi.org/10.1007/s10803-016-2787-4.
Wallace, G. L., Budgett, J., & Charlton, R. A. (2016). Aging and autism spectrum disorder: Evidence from the broad autism phenotype. Autism Research,9(12), 1294–1303. https://doi.org/10.1002/aur.1620.
World Health Organization. (1996). WHOQOL-BREF: Introduction, administration, scoring and generic version of the assessment. Geneva: Author. Retrieved from, http://apps.who.int/iris/handle/10665/63529.
Wright, S. D., Brooks, D. E., D’Astous, V., & Grandin, T. (2013). The challenge and promise of Autism Spectrum Disorders in adulthood and aging: A systematic review of the literature (1990–2013). Autism Insights,5, 21–73. https://doi.org/10.4137/AUI.S11072.
Yoong, A., & Koritsas, S. (2012). The impact of caring for adults with intellectual disability on the quality of life of parents. Journal of Intellectual Disability Research,56(6), 609–619. https://doi.org/10.1111/j.1365-2788.2011.01501.x.
Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., & Blumberg, S. J. (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. Retrieved from, https://www.ncbi.nlm.nih.gov/pubmed/26632847.
Funding
This research was supported in part by funding from Eastern Michigan University’s Summer Research Award.
Author information
Authors and Affiliations
Contributions
Christina N. Marsack‑Topolewski created and designed the study. She was responsible for the implementation of this study. She is the sole author of this publication and contributed to all aspects of the analysis, research, and writing for this manuscript. She would like to thank her dissertation chair, Dr. Faith Hopp, for her guidance and expertise to help with the development and implementation of this study.
Corresponding author
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Marsack-Topolewski, C.N. A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism. J Autism Dev Disord 50, 1111–1122 (2020). https://doi.org/10.1007/s10803-019-04285-6
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-019-04285-6