Examining the Lived Experiences of Older Autistic Adults: A Synthesis Review of Qualitative Literature

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Nicholas, D., Nelson, H., Shafai, F., Edelson, S., Bal, V., Lawson, W., Bauman, M., Hendren, R. L., & Trollor, J. (2026). Examining the Lived Experiences of Older Autistic Adults: A Synthesis Review of Qualitative Literature. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-026-07343-y

Publication date: 9 May 2026 Added to AutiHub: 11 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. David Nicholas
  2. Hilary Nelson
  3. Fakhri Shafai
  4. Stephen Edelson
  5. Vanessa Bal
  1. Wenn Lawson *
  2. Margaret Bauman
  3. Robert L. Hendren
  4. Julian Trollor

Abstract

PURPOSE: This scoping review includes the qualitative literature published from 2013 to 2024 exploring health, healthcare and quality of life among older Autistic adults. Aims were to identify evidence of later life experiences and outcomes for this population. METHODS: The review was based on Joanna Briggs Institute (JBI) scoping review methodology, with keywords searched within five relevant databases. Studies comprised peer reviewed articles with qualitative or mixed method designs addressing the quality of life, health or healthcare of Autistic adults in mid and later years (50 years and older). Participants in the reviewed studies included Autistic individuals, including those with or without intellectual disability, and/or individuals who support this population (e.g., personal supporters, caregivers, healthcare or service providers). RESULTS: A total of 12 papers were found that had qualitative data and met inclusion criteria. These studies cumulatively identified themes related to (i) aging with autism, with subthemes of sense of self and identity, connection, deriving enjoyment or meaning, and navigating health and healthcare; and (ii) service gaps, with subthemes of service issues, factors that mediate the effectiveness of supports, and professional knowledge gaps. CONCLUSION: Study authors advocate for increased research on aging and autism, improved services, and enhanced training and capacity-building for professionals in this field.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 11:55.

Cited references
41
With a DOI
39
Without a DOI, from raw bibliography text
2
11 / 41 (26.8%) cited references include at least one author identified as autistic.
References with data to complete
1 / 41 (2.4%)
References with detected author names
40 / 41 (97.6%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
2
References with raw author names still to review
1
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
247
From DOI or external metadata
247
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
126 / 247 (51.0%) names are linked to an author already present in AutiHub. 121 / 247 (49.0%) names are not yet linked.
Names linked to a person identified as autistic
14 / 247 (5.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 14 / 126 (11.1%). Distinct people identified as autistic: 13 / 201 (6.5%).
  1. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex
  2. Chris Barber * (2015). Old age and people on the autism spectrum: a focus group perspective . British Journal of Nursing, 24(21), 1054-1057. Mark Allen Group.
    Type: Article DOI: 10.12968/bjon.2015.24.21.1054 OpenAlex: https://openalex.org/W2188460674
    Crossref OpenAlex
  3. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542
    Crossref OpenAlex
  5. Lucy Barnard-Brak , David Richman , Zhanxia Yang (2019). Age at death and comorbidity of dementia-related disorders among individuals with autism spectrum disorder . Advances in Autism, 5(4), 293-302. Emerald.
    Type: Article DOI: 10.1108/aia-11-2018-0045 OpenAlex: https://openalex.org/W2914472894
    Crossref OpenAlex
  6. B. Blair Braden , Christopher J. Smith , Amiee Thompson , Tyler K. Glaspy , Emily Wood , Divya Vatsa et al. (2017). Executive function and functional and structural brain differences in middle‐age adults with autism spectrum disorder . Autism Research, 10(12), 1945-1959. Wiley.
    Type: Article DOI: 10.1002/aur.1842 OpenAlex: https://openalex.org/W2759793327
    Crossref OpenAlex
  7. Aoife Hickey , Jason Crabtree , Joshua Stott (2018). ‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism . Autism, 22(3), 357-367. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316680914 OpenAlex: https://openalex.org/W2588184259
    Crossref OpenAlex
  9. Elizabeth A. Wise , Marcia D. Smith , Peter V. Rabins (2017). Aging and Autism Spectrum Disorder: A Naturalistic, Longitudinal Study of the Comorbidities and Behavioral and Neuropsychiatric Symptoms in Adults with ASD . Journal of Autism and Developmental Disorders, 47(6), 1708-1715. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3095-3 OpenAlex: https://openalex.org/W2596993435
    Crossref OpenAlex
  10. Patrick S. Powell , Laura Klinger , Mark R. Klinger (2017). Patterns of Age-Related Cognitive Differences in Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(10), 3204-3219. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3238-6 OpenAlex: https://openalex.org/W2739368569
    Crossref OpenAlex
  12. Ye In (Jane) Hwang , Kitty-Rose Foley , Julian Trollor (2017). Aging well on the autism spectrum: the perspectives of autistic adults and carers . International Psychogeriatrics, 29(12), 2033-2046. Elsevier BV.
    Type: Article DOI: 10.1017/s1041610217001521 OpenAlex: https://openalex.org/W2743983420
    Crossref OpenAlex
  15. Andrea C. Tricco , Erin Lillie , Wasifa Zarin , Kelly K. O'Brien , Heather Colquhoun , Danielle Levac et al. (2018). PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation . Annals of Internal Medicine, 169(7), 467-473. American College of Physicians.
    Type: Article DOI: 10.7326/m18-0850 OpenAlex: https://openalex.org/W2891378911
    Crossref OpenAlex
  16. Brittany N. Hand , Amber Angell , Lauren Harris , Laura Arnstein Carpenter (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults . Autism, 24(3), 755-764. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319890793 OpenAlex: https://openalex.org/W2990129335
    Crossref OpenAlex
  17. Amanda Roestorf , Dermot Bowler , M.K. Deserno , Patricia Howlin , L. Klinger , Helen McConachie et al. (2019). “Older Adults with ASD: The Consequences of Aging.” Insights from a series of special interest group meetings held at the International Society for Autism Research 2016–2017 . Research in Autism Spectrum Disorders, 63, 3-12. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2018.08.007 OpenAlex: https://openalex.org/W2908068945
    Crossref OpenAlex
  18. S.M.J. Heijnen-Kohl , B. Hitzert , Rebecca J Schmidt , Hilde M. Geurts , S.P.J. van Alphen (2025). Features and Needs of Autistic Older Adults: A Delphi Study of Clinical Experiences . Clinical Gerontologist, 48(1), 110-120. Informa UK Limited.
    Type: Article DOI: 10.1080/07317115.2022.2060157 OpenAlex: https://openalex.org/W4223954319
    Crossref OpenAlex
  19. Ye In (Jane) Hwang , Preeyaporn Srasuebkul , Kitty-Rose Foley , Samuel R. C. Arnold , Julian Trollor (2019). Mortality and cause of death of Australians on the autism spectrum . Autism Research, 12(5), 806-815. Wiley.
    Type: Article DOI: 10.1002/aur.2086 OpenAlex: https://openalex.org/W2917274387
    Crossref OpenAlex
  21. Alexandra Leedham , Andrew R. Thompson , Richard Smith , Megan Freeth (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood . Autism, 24(1), 135. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319853442 OpenAlex: https://openalex.org/W2947577397
    Crossref OpenAlex
  22. Ye In (Jane) Hwang , Kitty-Rose Foley , Kieran Elley , Scott Andrew Brown , Dawn-joy Leong * , Xue Li et al. (2023). Experiences of Performing Daily Activities in Middle-Aged and Older Autistic Adults: A Qualitative Study . Journal of Autism and Developmental Disorders, 53(5), 2037-2049. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05473-7 OpenAlex: https://openalex.org/W4214533226
    Crossref OpenAlex
  23. M. P. Janicki , P. McCallion , Nancy Jokinen , F. K. Larsen , D. Mughal , V. Palanisamy et al. (2025). Autism and Dementia: A Summative Report from the 2nd International Summit on Intellectual Disabilities and Dementia . Journal of Autism and Developmental Disorders. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-025-06843-7 OpenAlex: https://openalex.org/W4410120467
    Crossref OpenAlex
  24. Claire Klein , Goldie A. McQuaid , Rebecca A. Charlton , Laura Klinger , Gregory L. Wallace (2023). Self‐reported cognitive decline among middle and older age autistic adults . Autism Research, 16(3), 605-616. Wiley.
    Type: Article DOI: 10.1002/aur.2877 OpenAlex: https://openalex.org/W4311307301
    Crossref OpenAlex
  27. Hassan Mansour , Amy Gillions , Jude Brown , Anoushka Pattenden , Susan Hartley , Sarifa Patel et al. (2025). ‘It’s designed for someone who is not me’: A reflexive thematic analysis of the unmet healthcare support needs in UK autistic adults aged 65 years and over . Autism, 29(3), 754-765. SAGE Publications.
    Type: Article DOI: 10.1177/13623613241291081 OpenAlex: https://openalex.org/W4403873027
    Crossref OpenAlex
  28. Micah D.J. Peters , Casey Marnie , Andrea C. Tricco , Danielle Pollock , Zachary Munn , Lyndsay Alexander et al. (2020). Updated methodological guidance for the conduct of scoping reviews . JBI Evidence Synthesis, 18(10), 2119-2126. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.11124/jbies-20-00167 OpenAlex: https://openalex.org/W3092419658
    Crossref OpenAlex
  29. Danielle A. Waldron , Caitlin Coyle , John Kramer (2022). Aging on the Autism Spectrum: Self-care Practices and Reported Impact on Well-Being . Journal of Autism and Developmental Disorders, 52(8), 3512-3522. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05229-9 OpenAlex: https://openalex.org/W3188818393
    Crossref OpenAlex
  30. Giacomo Vivanti , Sha Tao , Kristen Lyall , Diana L. Robins , Lindsay Shea (2021). The prevalence and incidence of early‐onset dementia among adults with autism spectrum disorder . Autism Research, 14(10), 2189-2199. Wiley.
    Type: Article DOI: 10.1002/aur.2590 OpenAlex: https://openalex.org/W3190968025
    Crossref OpenAlex
  31. Broc A. Pagni , Melissa J.M. Walsh , Edward Ofori , Kewei Chen , Georgia Sullivan , Jocelyn Alvar et al. (2022). Effects of age on the hippocampus and verbal memory in adults with autism spectrum disorder: Longitudinal versus cross‐sectional findings . Autism Research, 15(10), 1810-1823. Wiley.
    Type: Article DOI: 10.1002/aur.2797 OpenAlex: https://openalex.org/W4292952104
    Crossref OpenAlex
  32. Carolien Torenvliet , Annabeth P. Groenman , Tulsi A. Radhoe , Joost A. Agelink van Rentergem , Wikke J. Van der Putten , Hilde M. Geurts (2022). Parallel age‐related cognitive effects in autism: A cross‐sectional replication study . Autism Research, 15(3), 507-518. Wiley.
    Type: Article DOI: 10.1002/aur.2650 OpenAlex: https://openalex.org/W3216129159
    Crossref OpenAlex
  33. Tulsi A. Radhoe , Joost A. Agelink van Rentergem , Carolien Torenvliet , Annabeth P. Groenman , Wikke J. van der Putten , Hilde M. Geurts (2024). The clinical relevance of subgroups of autistic adults: Stability and predictive value . Autism Research, 17(4), 747-760. Wiley.
    Type: Article DOI: 10.1002/aur.3116 OpenAlex: https://openalex.org/W4392345899
    Crossref OpenAlex
  34. Melissa J.M. Walsh , Edward Ofori , Broc A. Pagni , Kewei Chen , Georgia Sullivan , B. Blair Braden (2022). Preliminary findings of accelerated visual memory decline and baseline brain correlates in middle-age and older adults with autism: The case for hippocampal free-water . Frontiers in Aging Neuroscience, 14, 1029166. Frontiers Media SA.
    Type: Article DOI: 10.3389/fnagi.2022.1029166 OpenAlex: https://openalex.org/W4308937900
    Crossref OpenAlex
  35. Gavin Robert Stewart , Emily Luedecke , Will Mandy , Rebecca A. Charlton , Francesca Happé (2024). Experiences of social isolation and loneliness in middle-aged and older autistic adults . Neurodiversity, 2, 1. SAGE Publications.
    Type: Article DOI: 10.1177/27546330241245529 OpenAlex: https://openalex.org/W4394881713
    Crossref OpenAlex
  36. C. Torenvliet , A.P. Groenman , T.A. Radhoe , J.A. Agelink van Rentergem , W.J. Van der Putten , Hilde M. Geurts (2023). A longitudinal study on cognitive aging in autism . Psychiatry Research, 321, 115063. Elsevier BV.
    Type: Article DOI: 10.1016/j.psychres.2023.115063 OpenAlex: https://openalex.org/W4317357939
    Crossref OpenAlex
  37. Mary Kris Stringfellow , Noelle L Fields , Kathy Lee , Keith A Anderson , Eva Brokaw (2024). Healthy Aging and Older Adults With Autism: A Scoping Review . The Gerontologist, 64(11), 1. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/geront/gnae026 OpenAlex: https://openalex.org/W4393119105
    Crossref OpenAlex
  38. Julian Trollor (2022). Australian Study of Autism in Adulthood (ALSAA). Final Report . Australian Study of Autism in Adulthood (ALSAA). Final Report.
    Type: Other
    Crossref
  39. Veritas Health Innovation. (2022). Covidence systematic review software. Melbourne. https://www.covidence.org
    Type: Other
    Crossref
  41. Giacomo Vivanti , Wei-Lin Lee , Jonas Ventimiglia , Sha Tao , Kristen Lyall , Lindsay Shea (2025). Prevalence of Dementia Among US Adults With Autism Spectrum Disorder . JAMA Network Open, 8(1), e2453691. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamanetworkopen.2024.53691 OpenAlex: https://openalex.org/W4405989663
    Crossref OpenAlex