The Experiences of Ageing Parents of Young Adults with Autism Spectrum Disorders (ASD)

  • Mabel Oti-BoadiEmail author
  • Kwaku Oppong Asante
  • Esther Kweiki Malm


Global improvements in health care have resulted in improved longevity for the general population, including persons with autism spectrum disorders (ASD). Increasingly, many parents are living with and providing care for their young adults with ASD. Little, however, is known about the experiences of ageing parents of young adults with ASD, particularly in developing countries like Ghana. This study explored the unique experiences of nine ageing parents and their young adults with ASD using semi-structured interviews. Data were analysed using the thematic analysis approach. Findings from the analysis of their responses revealed five themes: psychological exhaustion, future uncertainties, planning for the future, isolation and stigmatization and social support. Findings of this study serve to extend the developmental perspective of caring for caregivers and adult persons with ASD, with implications for designing interventions for such population in developing regions.


Ageing parents Young adults ASD Qualitative research Lived experiences Ghana 



We are sincerely grateful to the Teachers of New Horizon Special School, and families who participated in this study.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

The authors received ethical clearance (IRB 00001276) from the Noguchi Memorial Institute at the University of Ghana, Lego, Accra.


  1. Aldersey, H. M. (2012). Family perceptions of intellectual disability: Understanding and support in Dares Salaam. African Journal of Disability. Scholar
  2. Ambikile, J. S., & Outwater, A. (2012). Challenges of caring for children with mental disorders: Experiences and views of caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es Salaam-Tanzania. Child and Adolescent Psychiatry and Mental Health, 6(1), 1–11. Scholar
  3. American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.CrossRefGoogle Scholar
  4. Ansello, E. F., & Janicki, M., P. (2000). The aging of nations: Impact on the community, the family, and the individual. In M. P. Janicki & E. F. Ansello (Eds.), Community supports for ageing adults with life-long disabilities (pp. 3–18). Baltimore: Brookes.Google Scholar
  5. Avoke, M. (2002). Models of disability in the labelling and attitudinal discourse in Ghana. Disability & Society, 17(7), 769–777. Scholar
  6. Barker, E. T., Greenberg, J. S., Seltzer, M. M., & Almeida, D. M. (2012). Daily stress and cortisol patterns in parents of adult children with a serious mental illness. Health Psychology, 31, 130–134. Scholar
  7. Bigby, C. (2000). Moving on without parents: Planning, transitions and sources of support for middle-aged and older adults with intellectual disability. Baltimore: Brookes.Google Scholar
  8. Blacher, J., Kraemer, B. R., & Howell, E. J. (2010). Family expectations and transition experiences for young adults with severe disabilities: Does syndrome matter? Advances in Mental Health and Learning Disabilities, 4, 3–16.CrossRefGoogle Scholar
  9. Blackledge, J. T., & Hayes, S. C. (2006). Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child Family Behavior Therapy, 28(1), 1–18. Scholar
  10. Bowey, L., & McGlaughlin, A. (2007). Older carers of adults with a learning disability confront the future: Issues and preferences in planning. British Journal of Social Work, 37(1), 39–54.CrossRefGoogle Scholar
  11. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. Scholar
  12. Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status, and satisfaction with services. Autism, 8, 409–423.
  13. Catty, J., Burns, T., Comas, A., & Poole, Z. (2007). Day centers for severe mental illness. Cochrane Database of Systematic Reviews. Scholar
  14. Center for Disease Control (CDC). (2014). Prevalence of autism spectrum disorders among children aged 8 years: Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveillance Summaries, 63(2), 1–22.Google Scholar
  15. Chan, J. B., & Sigafoos, J. (2001). Does respite care reduce parental stress in families with developmentally disabled children? Child & Youth Care Forum, 30, 253–263.CrossRefGoogle Scholar
  16. Cheak-Zamora, N. C., Teti, M., Maurer-Batjer, A., & Koegler, E. (2017). Exploration and comparison of adolescents with autism spectrum disorder and their caregiver’s perspectives on transitioning to adult health care and adulthood. Journal of Pediatric Psychology, 42(9), 1028–1039.CrossRefGoogle Scholar
  17. Dillenburger, K., & McKerr, L. (2011). ‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities. British Journal of Learning Disabilities, 39(1), 29–38.Google Scholar
  18. Dudley, C., & Herbert Emery, J. C. (2014). The value of caregiver time: Costs of support and care for individuals living with autism spectrum disorder. Retrieved from
  19. Durà-Vilà, G., Dein, S., & Hodes, M. (2010). Children with intellectual disability: A gain not a loss: Parental beliefs and family life. Clinical Child Psychology and Psychiatry, 15(2), 171–184. Scholar
  20. Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorder, 38, 739–747.CrossRefGoogle Scholar
  21. Falk, N. H., Norris, K., & Quinn, M. G. (2014). The factors predicting stress, anxiety and depression in the parents of children with autism. Journal of Autism and Developmental Disorders, 44(12), 2185–3203.CrossRefGoogle Scholar
  22. Gallagher, S., & Whiteley, J. (2012). The association between stress and physical health problems in parents caring for children with intellectual disabilities is moderated by children’s challenging behaviours. Journal of Health Psychology, 18, 1220–1231. Scholar
  23. Gaylord-Harden, N. K., & Cunningham, J. A. (2009). The impact of racial discrimination and coping strategies on internalizing symptoms in African American youth. Journal of Youth & Adolescence, 38(4), 532–543. Scholar
  24. Gerhardt, P. D., & Lanier, I. (2011). Addressing the needs of adolescent and adults with autism: A crises on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45.CrossRefGoogle Scholar
  25. Ghana Statistical Service [GSS]. (2012). 2010 population & housing census report: The elderly in Ghana. Accra: Ghana Statistical Service.Google Scholar
  26. Glaser, B., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine Publishing Company.Google Scholar
  27. Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability and Society, 25, 33–47.CrossRefGoogle Scholar
  28. Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215–222.CrossRefGoogle Scholar
  29. Green, J., & Thorogood, N. (2009). Qualitative methods for health research (2nd ed.). London: Sage.Google Scholar
  30. Gyekye, K. (2003). African cultural values. Accra: Sankofa.Google Scholar
  31. Ha, J. H., Greenberg, J. S., & Seltzer, M. M. (2011). Parenting a child with a disability: The role of social support for African American parents. Families in Society: The Journal of Contemporary Social Services, 92(4), 405–411. Scholar
  32. Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family caregivers supporting adults with autistic spectrum disorders. Autism, 8, 425–444.CrossRefGoogle Scholar
  33. Harrington, C., Chapman, S., & Miller, E. (2005). Trends in the supply of long-term care facilities and beds in the United States. Journal of Applied Gerontology, 24, 265–282.CrossRefGoogle Scholar
  34. Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14, 159–171.CrossRefGoogle Scholar
  35. Heller, T., & Arnold, C. K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities, 7, 16–25.CrossRefGoogle Scholar
  36. Herrema, R., Garland, D., Osborne, M., Freeston, M., Honey, E., & Rodgers, J. (2017). Mental wellbeing of family members of autistic adults. Journal of Autism and Developmental Disorders, 47(11), 3589–3599. Scholar
  37. Hill, C., & Rose, J. (2009). Parenting stress in mothers of adults with an intellectual disability: Parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 53, 969–980.CrossRefGoogle Scholar
  38. Hogg, J., Lucchino, R., Wang, K., Janicki, M. P., & Working Group. (2000). Healthy ageing—Adults with intellectual disabilities: Ageing & social policy. Geneva: World Health Organization.Google Scholar
  39. Hollon, S. D., & Dimidjian, S. (2009). Cognitive and behavioral treatment of depression. In I. H. Gotlib & C. L. Hammen (Eds.), Handbook of depression (2nd ed., pp. 586–603). New York: Guilford Press.Google Scholar
  40. Kirsch, N. (2013). The experience of African American parents raising a child with intellectual disability: A qualitative study (Doctoral dissertation). Retrieved from ProQuest dissertations AND theses (Accession order no. 3598431).Google Scholar
  41. Kowal, P., Goodkind, D., & He, W. (2016). An aging world: International population reports. Washington, DC: U.S. Government Printing Office.Google Scholar
  42. Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people with intellectual disability: A systematic review. American Journal of Intellectual and Developmental Disabilities, 114, 193–222.CrossRefGoogle Scholar
  43. Lefley, H. P. (1997). Synthesizing the family caregiving studies: Implications for service planning, social policy and further research. Family Relations, 46, 443–450.CrossRefGoogle Scholar
  44. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills: Sage.CrossRefGoogle Scholar
  45. Lounds, J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. (2007). Transition and change in adolescents and young adults with autism: Longitudinal effects on maternal well-being. American Journal on Mental Retardation, 112, 401–417.CrossRefGoogle Scholar
  46. Mbiti, J. (1977). Introduction to African religion. Nairobi: Hennemann.Google Scholar
  47. McConkey, R. (2005). Fair shares? Supporting families caring for adult persons with intellectual disabilities. Journal of Intellectual Disability Research, 49, 600–612. Scholar
  48. McLennan, J. D., Caza, M., Boyle, M., McWilliam, R., Offord, D. R., Rondeau, K., et al. (2003). The integration of health and social services for young children and their families. Canadian Health Services Research Foundation. Retrieved from
  49. McNally, A., & Mannan, H. (2013). Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania. African Journal of Disability, 2(1), 1–10. Scholar
  50. Mesibov, G. B. (1990). Normalization and its relevance today. Journal of Autism and Developmental Disabilities, 20, 379–390.CrossRefGoogle Scholar
  51. Morrell, M. D., & Palmer, A. (2006). Parents across the autism spectrum: Unexpected lessons we have learned. Philadelphia: Jessica Kingsley.Google Scholar
  52. Mulvany, F., Barron, S., & McConkey, R. (2007). Residential provision for adult persons with intellectual disabilities in Ireland. Journal of Applied Research in Intellectual Disabilities, 20, 70–76.CrossRefGoogle Scholar
  53. O’Hara, J., & Bouras, N. (2007). Intellectual disabilities across cultures. In D. Bhugra K. Bhui (Eds.), Textbook of cultural psychiatry (pp. 461–470). Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  54. Orsmond, G. I., Lin, L.-Y., & Seltzer, M. M. (2007). Mothers of adolescents and adults with autism: Parenting multiple children with disabilities. Intellectual and Developmental Disabilities, 45(4), 257–270. Scholar
  55. Oti-Boadi, M. (2017). Exploring the lived experiences of mothers of children with intellectual disability in Ghana. Sage Open. 1–12.Google Scholar
  56. Paster, A., Brandwein, D., & Walsh, J. (2009). A comparison of coping strategies used by parents of children with disabilities and parents of children without disabilities. Research on Developmental Disabilities, 30, 1337–1342.
  57. Resch, J. A., Benz, M. R., & Elliott, T. R. (2012). Evaluating a dynamic process model of well-being for parents of children with disabilities: A multi-method analysis. Rehabilitation Psychology, 57, 61–72.CrossRefGoogle Scholar
  58. Persons With Disability Act. (2006). 175th Act of the Parliament of the Republic of Ghana. Accra: Ghana Publishing Company.Google Scholar
  59. Saldana, D., Alvarez, R. M., Lobaton, S., Lopez, A. M., Moreno, M., & Rojano, M. (2009). Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism, 113, 303–316.CrossRefGoogle Scholar
  60. Sharpley, C. F., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability, 22, 19–28.CrossRefGoogle Scholar
  61. Seltzer, M. M., Krauss, M. W., Orsmond, G. I., & Vestal, C. (2001). Families of adolescents and adults with autism: Uncharted territory. In L. M. Glidden (Ed.), International review of research on mental retardation, (Vol. 23, pp. 267–294). San Diego: Academic Press.Google Scholar
  62. Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric & Adolescent Medicine, 165, 141–146.CrossRefGoogle Scholar
  63. 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, 1818–1826. Scholar
  64. Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167–178. Scholar
  65. Taggart, L., Truesdale-Kennedy, M., Ryan, A., & McConkey, R. (2012). Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities, 16, 217–234.CrossRefGoogle Scholar
  66. Tarakeshwar, N., & Pargament, K. I. (2001). Religious coping in families of children with Autism. Focus on Autism and Other Developmental Disabilities, 16(4), 247–260.
  67. Taylor, R. J., Chatters, L. M., Hardison, C. B., & Riley, A. (2001). Informal social support networks and subjective well-being among African Americans. Journal of Black Psychology, 27, 439–463.CrossRefGoogle Scholar
  68. Turner, R. J. (1991). Affirming consciousness: The Africentric purpose. In J. E. Everett, S. S. Chipungu & B. R. Leashore (Eds.), Child welfare: An Africentric perspective (pp. 36–57). New Brunswick: Rutgers University Press.Google Scholar
  69. United Nations. (2006). Convention on the rights of persons with disabilities. disabilities/convention/conventionfull.shtml.
  70. Unwin, G., & Deb, S. (2011). Family caregiver uplift and burden: Associations with aggressive behaviour in adults with intellectual disability. Journal of Mental Health Research in Intellectual Disabilities, 4, 186–205.CrossRefGoogle Scholar
  71. Van Bourgondien, M. E., Dawkins, T., & Marcus, L. (2014). Families of adults with autism spectrum disorders. In F. R. Volkmar, B. Reichow & J. McPartland (Eds.), Adolescents and adults with autism spectrum disorders (pp. 15–40). New York: Springer.CrossRefGoogle Scholar
  72. Van Manen, M. (1990). Researching lived experience. London: University of Western Ontario.Google Scholar
  73. Verdonschot, M. M., de Witte, L. P., Reichrath, E., Buntinx, W. H., & Curfs, L. M. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53(4), 303–318.CrossRefGoogle Scholar
  74. Weigand, C., & Grosh, M. (2008). Levels and patterns of safety net spending in developing and transition countries. Social protection discussion paper 0817. Washington, DC: World Bank.Google Scholar
  75. 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.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.General Studies Department, Faculty of Computing & Information SystemsGhana Technology University CollegeAccraGhana
  2. 2.Department of Psychology, School of Social SciencesUniversity of GhanaAccraGhana
  3. 3.Discipline of Psychology, School of Applied Human SciencesUniversity of KwaZulu-NatalDurbanSouth Africa
  4. 4.Department of PsychologyMurray State UniversityMurrayUSA

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