The aim of this study was to understand middle-aged and older autistic adults’ views and experiences of ageing and their associated health and social care needs. Seventeen autistic adults (10 women and seven men) aged 46–72 years were recruited via convenience and snowball sampling strategies and interviewed via Zoom or telephone call about what it means to age well; their age-related needs; and how services could better support them to age well. Semi-structured interview transcripts were analysed using inductive thematic analysis. Five themes were identified. These reflected: (1) possibilities and fears around ageing; (2) adaptive strategies when facing age-related changes; (3) understanding and acceptance of autism for a more positive experience of ageing; (4) social relationships as important for supporting ageing and (5) formal support for ageing needing to be autism-informed. The findings highlight a need for increasing societal knowledge about ageing with autism, and for improved services to support this. We provide a set of recommendations for professionals working with autistic adults. These include involving autistic people in the design of health and social care services; ensuring that services are trauma-informed and strength-focused; and providing peer support to help autistic people navigate and access services.
Lay abstract
What was the purpose of this study?
The purpose of this study was to understand middle-aged and older autistic adults’ views and experiences of ageing well, their age-related needs, and how services could better support them to age well.
Why is this an important issue?
Very little research explains how autistic people experience ageing. It is important to know more about this to ensure that health and social services know how to best support ageing autistic people to live happier and healthier lives.
What did the researchers do?
We interviewed 17 middle-to-older autistic adults (10 females, 46–72 years) via Zoom or telephone. We typed up participant’s responses and looked for common themes within the data.
What were the results of the study?
Participants felt that links between autism and ageing were poorly understood, and that autistic adults may have a higher risk of certain age-related conditions such as dementia. Participants also felt their autistic characteristics and experiences were changing with age.
This study also revealed that current ageing support is generally felt to be incompatible with autistic adults’ characteristics. This incompatibility was linked to professionals not understanding autistic characteristics, and services being difficult to access. A hub-based model was proposed involving flexible and responsive peer and specialist support options.
How will these findings help autistic adults now or in the future?
This study raises the profile of the needs of ageing autistic adults. We have created a set of recommendations that will contribute to professionals’ understanding of autistic adults’ views on ageing well, their age-related support needs, and how to adapt service provision accordingly.
AbdiS.SpannA.BorilovicJ.de WitteL.HawleyM. (2019). Understanding the care and support needs of older people: A scoping review and categorisation using the WHO international classification of functioning, disability and health framework (ICF). BMC Geriatrics, 19(1), 195. https://doi.org/10.1186/s12877-019-1189-9
2.
AliD.O’BrienS.HullL.KennyL.MandyW. (2023). ‘The key to this is not so much the technology. It’s the individual who is using the technology’: Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic. Autism: The International Journal of Research and Practice, 27(2), 552–564. https://doi.org/10.1177/13623613221108010
3.
AthertonG.EdisburyE.PiovesanA.CrossL. (2022). Autism through the ages: A mixed methods approach to understanding how age and age of diagnosis affect quality of life. Journal of Autism and Developmental Disorders, 52(8), 3639–3654. https://doi.org/10.1007/s10803-021-05235-x
4.
BaltesP. B.BaltesM. M. (1990). Psychological perspectives on successful aging: The model of selective optimization with compensation. In BaltesP. B.BaltesM. M. (Eds.), Successful aging: Perspectives from the behavioral sciences (pp. 1–34). Cambridge University Press eBooks. https://doi.org/10.1017/cbo9780511665684.003
5.
BirtwellK.BramwellD.GowenE.BrownL. J. E.HulmeL.CorsellisE.RowlandC. (2025). ‘Our existence as whole individuals does not evaporate at age 50’: A mixed methods study of autistic adults’ perspectives on growing older. Autism in Adulthood. Advance online publication. https://doi.org/10.1089/aut.2024.0028
6.
BlixB. H.ÅgotnesG. (2023). Aging successfully in the changing Norwegian welfare state: A policy analysis framed by critical gerontology. The Gerontologist, 63(7), 1228–1237.
7.
BradshawP.PellicanoE.van DrielM.UrbanowiczA. (2019). How can we support the healthcare needs of autistic adults without intellectual disability?Current Developmental Disorders Reports, 6(2), 45–56. https://doi.org/10.1007/s40474-019-00159-9
8.
BraunV.ClarkeV.HayfieldN.TerryG. (2019). Thematic analysis. In LiamputtongP. (Ed.), Handbook of research methods health social sciences (pp. 843–860). Springer. https://doi.org/10.1007/978-981-10-5251-4_103
9.
BruggencateT.LuijkxK.SturmJ. (2018). Social needs of older people: A systematic literature review. Ageing & Society, 38(9), 1745–1770. https://doi.org/10.1017/S0144686X17000150
10.
BuchmanA. S.WilsonR. S.YuL.JamesB. D.BoyleP. A.BennettD. A. (2013). Total daily activity declines more rapidly with increasing age in older adults. Archives of Gerontology and Geriatrics, 58(1), 74–79. https://doi.org/10.1016/j.archger.2013.08.001
11.
BuckleK. L.LeadbitterK.PoliakoffE.GowenE. (2021). ‘No way out except from external intervention’: First-hand accounts of autistic inertia. Frontiers in Psychology, 12, 631596. https://doi.org/10.3389/fpsyg.2021.631596
12.
CageE.Di MonacoJ.NewellV. (2019). Understanding, attitudes and dehumanisation towards autistic people. Autism: The International Journal of Research and Practice, 23(6), 1373–1383. https://doi.org/10.1177/1362361318811290
13.
Camm-CrosbieL.BradleyL.ShawR.Baron-CohenS.CassidyS. (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism: The International Journal of Research and Practice, 23(6), 1431–1441. https://doi.org/10.1177/1362361318816053
14.
ChapmanR. (2021). Neurodiversity and the social ecology of mental functions. Perspectives on Psychological Science: A Journal of the Association for Psychological Science, 16(6), 1360–1372. https://doi.org/10.1177/1745691620959833
15.
CharltonR. A.HappéF. G.ShandA. J.MandyW.StewartG. R. (2025). Self-reported psychological, somatic, and vasomotor symptoms at different stages of the menopause for autistic and non-autistic people. Journal of Womens Health, 34(5), 622–634. https://doi.org/10.1089/jwh.2024.0784
16.
CharltonR. A.McQuaidG. A.WallaceG. L. (2023). Social support and links to quality of life among middle-aged and older autistic adults. Autism, 27(1), 92–104. https://doi.org/10.1177/13623613221081917
17.
ChenY.JenkinsC. A.CharltonR. A.HappéF.MandyW.StewartG. R. (2024). ‘Utterly overwhelming’ – A mixed-methods exploration of sensory processing differences and mental health experiences in middle-aged and older autistic adults. Autism in Adulthood. Advance online publication. https://doi.org/10.1089/aut.2024.0031
18.
CooperK.SmithL. G. E.RussellA. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47(7), 844–854. https://doi.org/10.1002/ejsp.2297
19.
CoscoT. D.PrinaA. M.PeralesJ.StephanB. C.BrayneC. (2013). Lay perspectives of successful ageing: A systematic review and meta-ethnography. British Medical Journal Open, 3(6), e002710. https://doi.org/10.1136/bmjopen-2013-002710
20.
CouznerL.SpenceN.FaustoK.HuoY.ValeL.ElkinsS.SaltisJ.CationsM. (2022). Delivering trauma-informed care in a hospital ward for older adults with dementia: An illustrative case series. Frontiers in Rehabilitation Sciences, 3, 934099. https://doi.org/10.3389/fresc.2022.934099
21.
CromptonC. J.MichaelC.DawsonM.Fletcher-WatsonS. (2020). Residential care for older autistic adults: Insights from three multiexpert summits. Autism in Adulthood, 2(2), 121–127. https://doi.org/10.1089/aut.2019.0080
22.
DohertyM.NeilsonS.O’SullivanJ.CarravallahL.JohnsonM.CullenW.ShawS. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. British Medical Journal Open, 12(2), e056904. https://doi.org/10.1136/bmjopen-2021-056904
23.
FosterL.WalkerA. (2015). Active and successful aging: A European policy perspective. The Gerontologist, 55(1), 83–90. https://doi.org/10.1093/geront/gnu028
24.
FrancisD.HershmanD.CharltonR. A.HappéF.StewartG. R. (2025). “Bigger lows, but higher highs”: A qualitative exploration of the similarities and differences in quality of life of middle-aged and older autistic and non-autistic adults. Research in Autism. 123. https://doi.org/10.1016/j.reia.2025.2025332025
25.
GilburtH.RoseD.SladeM. (2008). The importance of relationships in mental health care: A qualitative study of service users’ experiences of psychiatric hospital admission in the UK. BMC Health Services Research, 8(1), 92. https://doi.org/10.1186/1472-6963-8-92
26.
HandB. N.AngellA. M.HarrisL.CarpenterL. A. (2019). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism, 24(3), 755–764. https://doi.org/10.1177/1362361319890793
27.
HörderH. M.FrändinK.LarssonM. E. (2013). Self-respect through ability to keep fear of frailty at a distance: Successful ageing from the perspective of community-dwelling older people. International Journal of Qualitative Studies on Health and Well-Being, 8, 20194. https://doi.org/10.3402/qhw.v8i0.20194
28.
HowardP. L.SedgewickF. (2021). ‘Anything but the phone!’: Communication mode preferences in the autism community. Autism: The International Journal of Research and Practice, 25(8), 2265–2278. https://doi.org/10.1177/13623613211014995
HullL.PetridesK. V.AllisonC.SmithP.Baron-CohenS.LaiM.MandyW. (2017). ‘Putting on my best normal’: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5
31.
HwangY. I. J.FoleyK. R.TrollorJ. N. (2020). Aging well on the autism spectrum: An examination of the dominant model of successful aging. Journal of Autism and Developmental Disorders, 50(7), 2326–2335. https://doi.org/10.1007/s10803-018-3596-8
32.
HwangY. I. J.FoleyK. R.TrollorJ. N. (2017). Aging well on the autism spectrum: The perspectives of autistic adults and carers. International Psychogeriatrics, 29(12), 2033–2046.
33.
JobskiK.HöferJ.HoffmannF.BachmannC. (2017). Use of psychotropic drugs in patients with autism spectrum disorders: A systematic review. Acta Psychiatrica Scandinavica, 135(1), 8–28. https://doi.org/10.1111/acps.12644
34.
KleinC. B.KlingerL. G. (2024). Aging well and autism: A narrative review and recommendations for future research. Healthcare, 12(12), 1207. https://doi.org/10.3390/healthcare12121207
35.
KleinC. B.McQuaidG. A.CharltonR. A.KlingerL. G.WallaceG. L. (2022). Self-reported cognitive decline among middle and older age autistic adults. Autism Research, 16, 605–616.
36.
LeadbitterK.BuckleK. L.EllisC.DekkerM. (2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers in Psychology, 12, 635690. https://doi.org/10.3389/fpsyg.2021.635690
37.
LiuS.LarssonH.Kuja-HalkolaR.LichtensteinP.ButwickaA.TaylorM. J. (2023). Age-related physical health of older autistic adults in Sweden: A longitudinal, retrospective, population-based cohort study. The Lancet Healthy Longevity, 4(7), e307–e315. https://doi.org/10.1016/s2666-7568(23)00067-3
38.
MagiatiI.TayX. W.HowlinP. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73–86. https://doi.org/10.1016/j.cpr.2013.11.002
39.
MaiA. S.YauC. E.TsengF. S.FooQ. X. J.WangD. Q.TanE. K. (2023). Linking autism spectrum disorders and parkinsonism: Clinical and genetic association. Annals of Clinical and Translational Neurology, 10(4), 484–496. https://doi.org/10.1002/acn3.51736
40.
MansourH.GillionsA.BrownJ.PattendenA.HartleyS.PatelS.JamesS.StylesM.MandyW.StottJ.O’NionsE. (2024). ‘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. https://doi.org/10.1177/13623613241291081
41.
MartinsonM.BerridgeC. (2015). Successful aging and its discontents: A systematic review of the social gerontology literature. The Gerontologist, 55(1), 58–69. https://doi.org/10.1093/geront/gnu037
42.
MasonD.CappS. J.StewartG. R.KemptonM. J.GlaserK.HowlinP.HappéF. (2021). A Meta-analysis of outcome studies of autistic adults: Quantifying effect size, quality, and meta-regression. Journal of Autism and Developmental Disorders, 51, 3165–3179. https://doi.org/10.1007/s10803-020-04763-2
43.
MasonD.InghamB.UrbanowiczA.MichaelC.BirtlesH.Woodbury-SmithM.BrownT.JamesI.ScarlettC.NicolaidisC.ParrJ. R. (2019). A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders, 49(8), 3387–3400. https://doi.org/10.1007/s10803-019-04049-2
44.
MasonD.MackintoshJ.McConachieH.RodgersJ.FinchT.ParrJ. (2019). Quality of life for older autistic people: The impact of mental health difficulties. Research in Autism Spectrum Disorders, 63, 13–22. https://doi.org/10.1016/j.rasd.2019.02.007
45.
McConachieH.MasonD.ParrJ.GarlandD.WilsonC.RodgersJ. (2017). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48(5), 1596–1611. https://doi.org/10.1007/s10803-017-3402-z
46.
MoseleyR. L.DruceT.Turner-CobbJ. M. (2020). ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause. Autism: The International Journal of Research and Practice, 24(6), 1423–1437. https://doi.org/10.1177/1362361319901184
47.
NadeemM. S.HosawiS.AlshehriS.GhoneimM. M.ImamS. S.MurtazaB. N.KazmiI. (2021). Symptomatic, genetic, and mechanistic overlaps between autism and Alzheimer’s disease. Biomolecules, 11(11), 1635. https://doi.org/10.3390/biom11111635
O’NionsE.PetersenI.BuckmanJ. E.CharltonR.CooperC.CorbettA.HappéF.ManthorpeJ.RichardsM.SaundersR.ZankerC.MandyW.StottJ. (2023). Autism in England: Assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. The Lancet Regional Health – Europe, 29, 100626. https://doi.org/10.1016/j.lanepe.2023.100626
50.
PellicanoE.FatimaU.HallG.HeyworthM.LawsonW.LilleyR.MahonyJ.StearsM. (2022). A capabilities approach to understanding and supporting autistic adulthood. Nature Reviews Psychology, 1(11), 624–639. https://doi.org/10.1038/s44159-022-00099-z
51.
PiperM. A.CharltonR. A. (2025). Common and unique menopause experiences among autistic and non-autistic people: A qualitative study. Journal of Health Psychology. Advance online publication. https://doi.org/10.1177/13591053251316500
52.
PowerM. J.GreenA. M. & The WHOQOL-Dis Group. (2010). Development of the WHOQOL disabilities module. Quality of Life Research, 19(4), 571–584. http://www.jstor.org/stable/40605991
53.
RobertsonA.StanfieldA. C.WattJ.BarryF.DayM.CormackM.MelvilleC. (2018). The experience and impact of anxiety in autistic adults: A thematic analysis. Research in Autism Spectrum Disorders, 46, 8–18. https://doi.org/10.1016/j.rasd.2017.11.006
StewartG. R.CorbettA.BallardC.CreeseB.AarslandD.HampshireA.CharltonR. A.HappéF. (2022). Traumatic life experiences and post-traumatic stress symptoms in middle-aged and older adults with and without autistic traits. International Journal of Geriatric Psychiatry, 37(2), 1–10. https://doi.org/10.1002/gps.5669
56.
StewartG. R.LuedeckeE.MandyW.CharltonR. A.HappéF. (2024). Experiences of social isolation and loneliness in middle-aged and older autistic adults. Neurodiversity, 2. https://doi.org/10.1177/27546330241245529
57.
TerryG.HayfieldN.ClarkeV.BraunV. (2017). Thematic analysis. In WilligC.Stainton RogersW. (Eds.), The Sage handbook of qualitative research in psychology (2nd ed., pp. 17–37). SAGE.
58.
TongA.SainsburyP.CraigJ. C. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
59.
Van NiekerkM. E. H.GroenW. B.VissersC.Van Driel-De JongD.KanC. C.VoshaarR. C. O. (2010). Diagnosing autism spectrum disorders in elderly people. International Psychogeriatrics, 23(5), 700–710. https://doi.org/10.1017/s1041610210002152
60.
VinerH. E.YuillN.CostaA. P.RadfordH.KornadtA. E. (2024). A qualitative interview study on quality of life and ageing experiences of autistic adults. Communications Psychology, 2(1), 99. https://doi.org/10.1038/s44271-024-00142-0
61.
WeirE.AllisonC.Baron-CohenS. (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data. Molecular Autism, 13(1), 23. https://doi.org/10.1186/s13229-022-00501-w
62.
The WHOQOL Group. (1998). Development of the World Health Organisation WHOQOL-BREF Quality of Life Assessment. Psychological Medicine, 28, 551–558.
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