Hostname: page-component-78c5997874-g7gxr Total loading time: 0 Render date: 2024-11-05T06:53:39.852Z Has data issue: false hasContentIssue false
  • English
  • Français

Aging well on the autism spectrum: the perspectives of autistic adults and carers

Published online by Cambridge University Press:  11 August 2017

Ye In (Jane) Hwang ,
Kitty-Rose Foley  and
Julian N. Trollor
Ye In (Jane) Hwang*
Affiliation:
Department of Developmental Disability Neuropsychiatry (3DN), School of Psychiatry, Faculty of Medicine, UNSW Sydney, Australia Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, QLD, Australia
Kitty-Rose Foley
Affiliation:
Department of Developmental Disability Neuropsychiatry (3DN), School of Psychiatry, Faculty of Medicine, UNSW Sydney, Australia Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, QLD, Australia
Julian N. Trollor
Affiliation:
Department of Developmental Disability Neuropsychiatry (3DN), School of Psychiatry, Faculty of Medicine, UNSW Sydney, Australia Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, QLD, Australia
*
Correspondence should be addressed to: Ye In (Jane) Hwang, UNSW Sydney, Department of Developmental Disability Neuropsychiatry, 30 Botany Street Randwick NSW 2031Australia. Phone: +61-2-9385-0623; Fax +61-2-9931-9154. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

“Aging well” is an increasingly popular concept in gerontology. Adults with disabilities such as autism spectrum disorder represent a demographically substantial population, yet remain excluded from existing conceptualizations of aging well. This qualitative study aimed to explore what it means for autistic adults to “age well” from the perspectives of autistic adults and carers.

Methods:

Twenty-four semi-structured interviews were conducted with 15 autistic adults (mean age 50.3 years) and 9 carers of autistic adults. Interviews were offered in four formats: email, telephone, Skype, and face-to-face and included three questions exploring what it means for autistic adults to age well as well as what might help or hinder them from aging well.

Results:

Aging well was found to be a multifaceted concept that encompassed the autistic individual, others, the world they live in, and relational issues connecting these domains. Thematic analysis revealed eight themes to be common across participants’ responses: “myself,” “being autistic,” “others,” “lifestyle and living well,” “being supported,” “relating to others,” “life environment,” and “societal attitudes and acceptance.”

Conclusions:

In line with previous studies, a more diverse range of personal and environmental factors should be included in conceptualizing aging well. In contrast to dominant perspectives, being autistic was not considered a hindrance to aging well. Rather, social and relational issues were central and unique to aging well for autistic adults. Implications include the need to address societal attitudes towards autism and building capacity and understanding in those who are both formally and informally involved in the lives of autistic adults.

Keywords

agingdisabilityqualitative researchquality of lifeneuropsychiatry
Type
Research Article
Information
International Psychogeriatrics , Volume 29 , Issue 12 , December 2017 , pp. 2033 - 2046
Copyright
Copyright © International Psychogeriatric Association 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

American Psychiatric Association. (2013). Neurodevelopmental disorders. In Diagnostic and Statistical Manual of Mental Disorders, (5th ed.). https://doi.org/10.1176/appi.books.9780890425596.dsm01.Google Scholar
Amin, I. (2017). Perceptions of successful aging among older adults in Bangladesh: an exploratory study. Journal of Cross-Cultural Gerontology, 32 (2), 191–207. https://doi.org/10.1007/s10823-017-9319-3 Google Scholar
Arthur-Kelly, M., Sigafoos, J., Green, V., Mathisen, B. and Arthur-Kelly, R. (2009). Issues in the use of visual supports to promote communication in individuals with autism spectrum disorder. Disability and Rehabilitation, 31 (18), 1474–1486. https://doi.org/10.1080/09638280802590629 Google Scholar
Bagatell, N. (2010). From cure to community: transforming notions of autism. Journal of the Society for Psychological Anthropology, 38 (1), 33–55.Google Scholar
Billstedt, E., Carina Gillberg, I. and Gillberg, C. (2007). Autism in adults: symptom patterns and early childhood predictors. Use of the DISCO in a community sample followed from childhood. Journal of Child Psychology and Psychiatry and Allied Disciplines, 48 (11), 1102–1110. https://doi.org/10.1111/j.1469-7610.2007.01774.x Google Scholar
Bosnes, I., Almkvist, O., Bosnes, O., Stordal, E., Romild, U. and Nordahl, H. M. (2016). Prevalence and correlates of successful aging in a population-based sample of older adults: the HUNT study. International Psychogeriatrics, 1–10. https://doi.org/10.1017/S1041610216001861 Google Scholar
Bowling, A. and Iliffe, S. (2011). Psychological approach to successful ageing predicts future quality of life in older adults. Health and Quality of Life Outcomes, 9 (1), 13. https://doi.org/10.1186/1477-7525-9-13 Google Scholar
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa Google Scholar
Brown, L. J. and Bond, M. J. (2016). Comparisons of the utility of researcher-defined and participant-defined successful ageing. Australasian Journal on Ageing, 35 (1), E7–E12. https://doi.org/10.1111/ajag.12250 Google Scholar
Brugha, T. S. et al. (2016). Epidemiology of autism in adults across age groups and ability levels. The British Journal of Psychiatry : The Journal of Mental Science, bjp.bp.115, 174649. https://doi.org/10.1192/bjp.bp.115.174649 Google Scholar
Charmaz, K. (2006). Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. (Vol. 10). https://doi.org/10.1016/j.lisr.2007.11.003 Google Scholar
Christensen, D. L., Baio, J. and Braun, K. V. N. (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 (Vol. 65). https://doi.org/10.15585/mmwr.ss6503a1 Google Scholar
Cosco, T. D. et al. (2015). Cross-cultural perspectives of successful aging: young Turks and Europeans. Educational Gerontology, 1277, (July 2015), Art no. 150616113410009. https://doi.org/10.1080/03601277.2015.1050899 Google Scholar
Cosco, T. D., Prina, A. M., Perales, J., Stephan, B. C. M. and Brayne, C. (2013). Operational definitions of successful aging: a systematic review. International Psychogeriatrics, 26 (3), 1–9. https://doi.org/10.1017/S1041610213002287 Google Scholar
Creswell, J. W. and Clark, V. L. P. (2011). Designing and Conducting Mixed Methods Research, 2nd edn. California: SAGE Publications Inc.Google Scholar
DePape, A.-M. and Lindsay, S. (2015). Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities, 25 (4), 569–83. https://doi.org/10.1177/1088357615587504 Google Scholar
Freedman, V. A. (2014). Research gaps in the demography of aging with disability. Disability and Health Journal, 7, S60–S63. https://doi.org/10.1016/j.dhjo.2013.04.009 Google Scholar
Halladay, A. K. et al. (2015). Sex and gender differences in autism spectrum disorder: summarizing evidence gaps and identifying emerging areas of priority. Molecular Autism, 6, 36. https://doi.org/10.1186/s13229-015-0019-y Google Scholar
Hategan, A., Bourgeois, J. A. and Goldberg, J. (2017). Aging with autism spectrum disorder: an emerging public health problem. International Psychogeriatrics, 29 (04), 695–697. https://doi.org/10.1017/S1041610216001599 Google Scholar
Henninger, N. A. and Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: a historical perspective. Autism, 17, 103–116.Google Scholar
Hodge, A. M., English, D. R., Giles, G. G. and Flicker, L. (2013). Social connectedness and predictors of successful ageing. Maturitas, 75, 361–366. https://doi.org/10.1016/j.maturitas.2013.05.002 Google Scholar
Jopp, D., Wozniak, D., Damarin, A. K., De Feo, M., Jung, S. and Jeswani, S. (2015). How could lay perspectives on successful aging complement scientific theory? findings from a U.S. and a German life-span sample. The Gerontologist, 55, 91–106. https://doi.org/10.1093/geront/gnu059 Google Scholar
Kok, A. A. L., Aartsen, M. J., Deeg, D. J. H. and Huisman, M. (2015). Capturing the diversity of successful aging: an operational definition based on 16-year trajectories of functioning. The Gerontologist, 57, gnv127. https://doi.org/10.1093/geront/gnv127 Google Scholar
Kok, F. M., Groen, Y., Becke, M., Fuermaier, A. B. M. and Tucha, O. (2016). Self-reported empathy in adult women with autism spectrum disorders - a systematic mini review. PLoS ONE, 11 (3), 1–13. https://doi.org/10.1371/journal.pone.0151568 Google Scholar
Malterud, K. (2001). Qualitative research: standards, challenges, and guidelines. Lancet, 358, 483–488. https://doi.org/10.1016/S0140-6736(01)05627-6.Google Scholar
Martinson, M. and Berridge, C. (2014). Successful aging and its discontents: a systematic review of the social gerontology literature. The Gerontologist, 1–12. https://doi.org/10.1093/geront/gnu037 Google Scholar
Minkler, M. and Fadem, P. (2002). Successful aging: a disability perspective. Journal of Disability Policy Studies, 12, 229–235.Google Scholar
Murphy, C. et al. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, 12, 1669–1686. https://doi.org/10.2147/NDT.S65455 Google Scholar
Ortlipp, M. (2008). Keeping and using reflective journals in the qualitative research process. The Qualitative Report, 13, 695–705. http://www.nova.edu/ssss/QR/QR13-4/ortlipp.pdf Google Scholar
Patton, M. (1990). Designing qualitative studies. In Qualitative Evaluation and Research Methods (2nd ed., pp. 169–186). Beverly Hills, CA: Sage Publications.Google Scholar
Perkins, E. A. and Berkman, K. A. (2012). Into the unknown: aging with autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 117, 478–496. https://doi.org/10.1352/1944-7558-117.6.478 Google Scholar
Pruchno, R. A., Wilson-genderson, M. and Cartwright, F. (2010). A two-factor model of successful aging. Journal of Gerontology: Psychological Sciences, 65B, 671–679. https://doi.org/10.1093/geronb/gbq051.Google Scholar
Pruchno, R., Heid, A. R. and Genderson, M. W. (2015). Resilience and successful aging: aligning complementary constructs using a life course approach. Psychological Inquiry, 26, 200–207. https://doi.org/10.1080/1047840X.2015.1010422 Google Scholar
QSR International Pty Ltd. (2012). NVivo Qualitative Data Analysis Software. Melbourne, Australia: QSR International Pty Ltd.Google Scholar
Reichstadt, J., Sengupta, G., Depp, C. A., Palinkas, L. A. and Jeste, D. V. (2010). Older adults’ perspectives on successful aging: qualitative interviews. American Journal of Geriatric Psychiatry, 18, 567–575. https://doi.org/10.1037/a0030561.Striving Google Scholar
Reppermund, S. and Trollor, J. N. (2016). Successful ageing for people with an intellectual disability. Current Opinion in Psychiatry, 29, 149–154. https://doi.org/10.1097/YCO.0000000000000228 Google Scholar
Rowe, J. W. and Kahn, R. L. (1987). Human aging: usual and successful. Science, 237, 143–149.Google Scholar
Rowe, J. W. and Kahn, R. L. (1997). Successful aging. The Gerontologist, 37, 433–440. https://doi.org/10.1093/geront/37.4.433.Google Scholar
Rowe, J. W. and Kahn, R. L. (2015). Successful aging 2.0: conceptual expansions for the 21st century. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 70, 593–596. https://doi.org/10.1093/geronb/gbv025.Google Scholar
Schendel, D. E. et al. (2016). Association of psychiatric and neurologic comorbidity with mortality among persons with autism spectrum disorder in a Danish population. JAMA Pediatrics, 170, 1–8. https://doi.org/10.1001/jamapediatrics.2015.3935.Google Scholar
Spencer, L., Lyketsos, C. G., Samstad, E., Dokey, A., Rostov, D. and Chisolm, M. S. (2011). A suicidal adult in crisis: an unexpected diagnosis of autism spectrum disorder. American Journal of Psychiatry, 168, 890–892. https://doi.org/10.1176/appi.ajp.2011.10091261.Google Scholar
Stuart Hamilton, I. and Morgan, H. (2011). What happens to people with autism spectrum disorders in middle age and beyond? report of a preliminary on-line study. Advances in Mental Health and Intellectual Disabilities, 5, 22–28. https://doi.org/10.5042/amhid.2011.0109.Google Scholar
Synergies Economic Consulting. (2011). Economic Costs of Autism Spectrum Disorder in Australia. Retrieved from http://www.synergies.com.au/_inc/doc_download.aspx?did=108.Google Scholar
Weir, P. L., Meisner, B. A. and Baker, J. (2010). Successful aging across the years: does one model fit everyone? Journal of Health Psychology, 15, 680–687. https://doi.org/10.1177/1359105309353648.Google Scholar
Wright, S. D., Wright, C. A., D'Astous, V. and Wadsworth, A. M. (2016). Autism aging. Gerontology & Geriatrics Education, 1–17. https://doi.org/10.1080/02701960.2016.1247073.Google Scholar