Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs

  • Jennifer L. Hillman
  • Michele C. Wentzel
  • Connie M. Anderson
Original Paper

Abstract

Limited information is available regarding the first person perspective of grandparents of children with Autism Spectrum Disorders (ASD). In the present study, 1870 grandparents of a child with ASD participated in a nationwide, online, anonymous, 30-minute survey and responded to open-ended questions including their “greatest challenges and greatest joys” as the grandparent of a child on the autism spectrum. A grounded theory approach to qualitative analysis revealed four overarching categories: a Desire for Connection, Barriers to Care, Celebration of Progress, and Personal Reactions. Despite the presence of significant challenges grandparents often experienced positivity in their role, and engaged in radical acceptance of their grandchild as well as transformative insight and advocacy. Specific recommendations are offered to help address grandparents’ needs and capitalize upon their resilience.

Keywords

Grandparents Autism spectrum disorder Grandchildren Resilience Depression Coping Communication Tantrums Inappropriate behavior 

References

  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. (5th ed.). Arlington, VA: American Psychiatric Publishing.CrossRefGoogle Scholar
  2. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2012 Principal Investigators. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries/CDC, 65(3), 1–23.Google Scholar
  3. Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702–714.CrossRefPubMedGoogle Scholar
  4. Bruns, D., & Foerster, K. (2011). ‘We’ve been through it all together’: Supports for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55(4), 361–369.CrossRefPubMedGoogle Scholar
  5. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.Google Scholar
  6. 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.CrossRefGoogle Scholar
  7. D’Astous, V., Wright, S., Wright, C., & Diener, M. L. (2013). Grandparents of grandchildren with Autism Sectrum Disorders: Influences on engagement. Journal of Intergenerational Relationships, 11(2), 134–114. doi:10.1080/15350770.2013.782744.CrossRefGoogle Scholar
  8. DePape, A., & Lindsay, S. (2015). Parents’ experiences of caring or a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. doi:10.1177/1049732314552455.CrossRefPubMedGoogle Scholar
  9. 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.CrossRefPubMedGoogle Scholar
  10. Fuchs, Hl. C., Haradhvala, N., Evans, D., Nash, J. M., Weisberg, R. B., et al. (2016). Implementation of an acceptance and mindfulness-based group for depression and anxiety in primary care: Initial outcomes. Families, Systems, & Health, 34(4), 386–395.CrossRefGoogle Scholar
  11. Gosling, S. D., Vazaire, S., Srivastava, & 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.CrossRefPubMedGoogle Scholar
  12. Gouze, K. R., & Wendel, R. (2008). Integrative module-based family therapy: Application and training. Journal of Marital and Family Therapy, 3(3), 269–286.CrossRefGoogle Scholar
  13. Gray, D. (2003). Gender and coping: The parents of children with high functioning Autism. Social Science & Medicine, 56, 631–642.CrossRefGoogle Scholar
  14. Hamlyn-Wright, S., Draghi-Lorenz, R., & Ellis, J. (2007). Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism: The International Journal of Research and Practice, 11, 489–501.CrossRefGoogle Scholar
  15. 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.CrossRefPubMedGoogle Scholar
  16. 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.CrossRefGoogle Scholar
  17. 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.CrossRefGoogle Scholar
  18. 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. doi:10.1007/s10803-012-1639-0.CrossRefPubMedGoogle Scholar
  19. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with Autism. Journal of Child Psychology and Psychiatry, 45 (2), 212–229.CrossRefPubMedGoogle Scholar
  20. Hutton, A. M. & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20 (3), 180–189.CrossRefGoogle Scholar
  21. Kelly, G. A., & Lazarus, J. (2015). Perceptions of successful aging: Intergenerational voices value well-being. The International Journal of Aging and Human Development, 80(3), 233–247.CrossRefPubMedGoogle Scholar
  22. Mansonn, D. H. (2016). The joy of grandparenting: A qualitative analysis of grandparents. Journal of Intergenerationsl Relationships,14 (2), 135–145. doi:10.1080/15350770.2016.1160738.CrossRefGoogle Scholar
  23. Margetts, J. K., Le Courteur, 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
  24. Minjarez, M. B., Williams, S. E., Mercier, E. M., & Hardan, A. Y. (2011). Pivotal response group treatment programs for parents of children with autism. Journal of Autism and Developmental Disorders, 41, 92–101. doi:10.1007/s10803-010-1027-6.CrossRefPubMedGoogle Scholar
  25. 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.CrossRefGoogle Scholar
  26. Nimeus, A., Traskman-Bendz, L., & Alsen, M. (1997). Hopelessness and suicidal behavior. Journal of Affective Disorders, 42(2), 137–144.CrossRefPubMedGoogle Scholar
  27. Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29(2), 95–103.CrossRefGoogle Scholar
  28. Seligman M. E. P., & Csikszentmihalyi, M. (2000). Positive psychology: An introduction. American Psychologist, 55, 5–14.CrossRefPubMedGoogle Scholar
  29. Shallcross, A. J., Gross, J. J., Visvanathan, P. D., Kumar, N. P., Palfrey, A., et al (2015). Relapse prevention in major depressive disorder: Mindfulness-based cognitive therapy versus an active control condition. Journal of Consulting and Clinical Psychology, 83(5), 964–975.CrossRefPubMedPubMedCentralGoogle Scholar
  30. Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38, 876–889.CrossRefPubMedPubMedCentralGoogle Scholar
  31. Strauss, A. L., & Corbin, J. M. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: Sage.Google Scholar
  32. Sullivan, A., Winograd, G., Verkuilen, J., & Fish, M. C. (2012). Children on the autism spectrum: Grandmother involvement and family functioning. Journal of Applied Research in Intellectual Disabilties, 25, 484–494.CrossRefGoogle Scholar
  33. Trute, B., Worthington, C., Hiebert-Murphy, D. (2008). Grandmother support for parents of children with disabilities: Sex differences in parenting stress. Families, Systems, & Health, 26(2), 135–146.CrossRefGoogle Scholar
  34. Vismara, L. A., McCormick, C., Young, G. S., Nadhan, A., & Monlux, K. (2013). Preliminary findings of a telehealth approach to parent training in Autism. Journal of Autism and Developmental Disorders, 43, 2953–2969. doi:10.1007/s10803-013-1841-8.CrossRefPubMedGoogle Scholar
  35. Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health:The mediating role of acceptance and empowerment. Autism, 16(3), 261–274. doi:10.1177/1362361311422708.CrossRefPubMedGoogle Scholar
  36. World Health Organization. (2017). Autism spectrum disorders: Fact sheet. Retrieved on May 21, 2017 from http://www.who.int/mediacentre/factsheets/autism-spectrum-disorders/en/.
  37. Wright, S. D., D’Astous, V., Wright, C. A., & Diener, M. A. (2012). Grandparents of grandchildrenwith autism spectrum disorder (ASD): Strengthening relationships through technologyactivities. International Journal of Aging and Human Development, 75(2), 169–184.CrossRefPubMedGoogle Scholar
  38. Zickuhr, K., & Madden, M. (2012). Older adults and internet use: For the first time, half of adults ages 65 and older are online. Washington, DC: Pew Internet & American Life Project.Google Scholar
  39. Zlomke, K. R. (2009). Psychometric properties of internet administered versions of Penn State Worry Questionnaire (PSWQ) and Depression, Anxiety, and Stress Scale (DASS).Computers and Human Behavior, 25(4), 841–843.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  1. 1.Berks CollegeThe Pennsylvania State UniversityReadingUSA
  2. 2.College of Health ProfessionsTowson UniversityTowsonUSA

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