Skip to main content
SpringerLink
Log in

It’s a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder

Journal of Autism and Developmental Disorders volume 49, pages 260–269 (2019)Cite this article

Abstract

We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their “greatest challenges and joys” as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents’ stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents’ coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents’ wisdom included patience and insight. Recommendations to support these caregivers are provided.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

References

  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th edn.). Washington, DC: American Psychiatric Association.

    Google Scholar 

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th edn.). Arlington, VA: American Psychiatric Publishing.

    Book  Google Scholar 

  • Autism and Developmental Disabilities Monitoring Network Surveillance Year 2014 Principal Investigators. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report (MMWR). Surveillance Summaries/CDC, 67(6), 1–23.

    Google Scholar 

  • Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702–714.

    Article  Google Scholar 

  • Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4, 217–228.

    Article  Google Scholar 

  • Bloch, J. S., & Weinstein, J. D. (2010). Families of young children with autism. Social Work on Mental Health, 8, 23–40.

    Article  Google Scholar 

  • Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.

    Google Scholar 

  • Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623.

    Article  PubMed  PubMed Central  Google Scholar 

  • Curtain, C., Hubbard, K., Anderson, S. E., Mick, E., Must, A., et al. (2015). Food selectivity, mealtime behavior problems, spousal stress, and family food choices in children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(10), 3308–3315.

    Article  Google Scholar 

  • D’Astous, V., Wright, S. D., Wright, C. A., & Diener, M. L. (2013). Grandparents of grandchildren with autism spectrum disorders: Influences on engagement. Journal of Intergenerational Relationships, 11(2), 134–147.

    Article  Google Scholar 

  • DePape, A., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583.

    Article  PubMed  Google Scholar 

  • Dunifon, R., Ziol-Guest, K., & Kopko, K. (2014). Grandparental co-residence and family well-being: Implications for research and policy. Annals of the American Academy of Political and Social Science, 654, 10–126.

    Article  Google Scholar 

  • Dyches, T. T., Christensen, R., Harper, J. M., Mandleco, B., & Roper, S. O. (2016). Respite care for single mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46, 812–824.

    Article  PubMed  Google Scholar 

  • Force, L. T., Botsford, A., Pisano, P. A., & Holbert, A. (2000). Grandparents raising children with and without a developmental disability: Preliminary comparisons. Journal of Gerontological Social Work, 33(4), 5–21.

    Article  Google Scholar 

  • Gosling, S. D., Vazire, S., Srivastava, S., & John, O. P. (2004). Should we trust web-based studies? A comparative analysis of six preconceptions about internet questionnaires. American Psychologist, 59(2), 93–104.

    Article  PubMed  Google Scholar 

  • Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642.

    Article  PubMed  Google Scholar 

  • Hayslip, B., & Kaminski, P. L. (2005). Grandparents raising grandchildren: A review of the literature and suggestions for practice. The Gerontologist, 45(2), 262–269.

    Article  PubMed  Google Scholar 

  • Hillman, J. (2007). Grandparents of children with autism: A review and recommendations for education practice, and policy. Educational Gerontology: An International Journal, 33(6), 513–527.

    Article  Google Scholar 

  • Hillman, J., Marvin, A., & Anderson, C. (2016). The experience and contributions of grandparents of children with autism spectrum disorders. Journal of Intergenerational Relationships, 14(2), 76–92.

    Article  Google Scholar 

  • Hillman, J. L., Wentzel, M. C., & Anderson, C. M. (2017). Grandparents’ experience of autism spectrum disorder: Identifying primary themes and needs. Journal of Autism and Developmental Disorders, 47, 2957–2968.

    Article  PubMed  Google Scholar 

  • Hodge, D., Hoffman, C. D., Sweeney, D. P., & Riggs, M. L. (2013). Relationship between children’s sleep and mental health in mothers of children with and without Autism. Journal of Autism and Developmental Disorders, 43(4), 956–963.

    Article  PubMed  Google Scholar 

  • Janicki, M. P. (2000). Grandparent caregivers I: Characteristics of the grandparents and the children with disabilities for whom they care. Journal of Gerontological Social Work, 33(3), 35–55.

    Article  Google Scholar 

  • Kresak, K. E., Gallagher, P. A., & Kelley, S. J. (2014). Grandmothers raising grandchildren with disabilities: Sources of support and family quality of life. Journal of Early Intervention, 36(1), 3–17.

    Article  Google Scholar 

  • Margetts, J., Le Courteur, K., A., & Croom, S. (2006). Families in a state of flux: The experience of grandparents in autism spectrum disorder. Child: Care, Health, and Development, 32, 565–574.

    Google Scholar 

  • Myers, B. J., Mackintosh, V. H., & Goin-Kochet, R. P. (2009). My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684.

    Article  Google Scholar 

  • Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009). Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability, 34(2), 133–141.

    Article  PubMed  Google Scholar 

  • Sampson, D., & Hertlein, K. (2015). The experience of grandparents raising grandchildren. GrandFamilies: The Contemporary Journal of Research, Practice, and Policy, 2(1), 75–96.

    Google Scholar 

  • Strauss, A. L., & Corbin, J. M. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd edn.). Thousand Oaks: Sage.

    Google Scholar 

  • Taylor, S. E., & Lobel, M. (1989). Social comparison activity under threat: Downward evaluation and upward contacts. Psychological Review, 96(4), 569–575.

    Article  PubMed  Google Scholar 

  • U.S. Census Bureau. (2014). Coresident grandparents and their grandchildren: 2012 population characteristics. Retrieved June 1, 2018 from https://www.census.gov/content/dam/Census/library/ publications/2014/demo/p20-576.pdf.

  • Wright, S. D., D’Astous, V., Wright, C. A., & Diener, M. L. (2012). Grandparents of grandchildren with Autism Spectrum Disorders (ASD): Strengthening relationships through technology activities. International Journal of Aging and Human Development, 75(2), 169–184.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to acknowledge the grandparents who participated in this research, and Autism Speaks and The Association for the Advancement of Retired Persons (AARP) for their assistance with recruitment.

Author information

Authors and Affiliations

  1. Applied Psychology Program, The Pennsylvania State University, Berks College, Franco 119, Tulpehocken Road, PO Box 7009, Reading, PA, 19610, USA

    Jennifer L. Hillman

  2. Post Baccalaureate Certificate Program in Autism Studies, College of Health Professions, Towson University, Towson, USA

    Connie M. Anderson

Authors
  1. Jennifer L. Hillman
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Connie M. Anderson
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

JLH performed qualitative and quantitative analysis of the data, and drafted and helped to revise the manuscript. CMA conceived and designed the study, coordinated data acquisition, performed qualitative analyses, and helped to draft and revise the manuscript. Both authors read and approved the final manuscript.

Corresponding author

Correspondence to Jennifer L. Hillman.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Rights and permissions

Reprints and Permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Hillman, J.L., Anderson, C.M. It’s a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder. J Autism Dev Disord 49, 260–269 (2019). https://doi.org/10.1007/s10803-018-3761-0

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-018-3761-0

Keywords

search

Navigation