Retirement and care in later life
In the one survey to compare them, autistic and non-autistic adults retired, or expected to retire, at similar ages, but autistic adults reached retirement through different working lives: less full-time work, smaller pensions, less financial stability, and far fewer plans. The research on what comes after is thin. This entry covers retirement, who provides care and where older autistic adults live, loneliness and social connection, and planning for later life.
Autistic and non-autistic adults often stop work at around the same age. But autistic adults get there with less full-time work, less money and fewer plans. This entry looks at retirement, care, where people live, loneliness and planning in later life.
Retirement from work Emerging
Retirement is recent ground for autism research, and much of what is known comes from one UK survey. In the "Planning for Older Age" study, 517 adults aged 40 to 90 (395 autistic, 122 non-autistic) answered questions about their retirement status, plans, experiences, employment history, income and financial security. Autistic and non-autistic participants had retired, or expected to retire, at similar ages.1
They reached retirement differently. Autistic participants were less likely to have made very detailed plans (21.7%, against 41.8% of the non-autistic group) and much more likely to have made none at all (41.1%, against 12.3%). In the years before retirement they reported less full-time work (73.9% against 82.4%), more unemployment or inability to work (11.4% against 2.5%) and less financial stability (44.1% rated it low, against 27.0%); the two groups were about as likely to be able to save. Autistic participants were less likely to have a workplace pension (70.4%, against 95.1%) and, among those not yet retired, reported lower annual income.1 Many said they had not been given clear information about what retirement involves or how pensions work. Their worries included isolation, losing routine and money, while some looked forward to more autonomy and time for interests and self-care.1
A separate interview study spoke to 12 autistic adults aged 56 to 70 (mean 63) who had retired, semi-retired or were planning to retire. Their experiences were mixed: some described difficulty with planning and with the adjustment to retirement, while others saw it as a welcome break from difficult workplaces. A lack of support during retirement was a common theme.2
Retirement also ends a working life that often looked different for this group. In a US community cohort, 341 autistic adults were followed for 22 years. Among those without an intellectual disability, hours of competitive employment rose from young adulthood into early midlife, then leveled off and fell into late midlife; those with an intellectual disability worked few competitive hours at any age.3 That describes one group's working lives; it does not explain why the hours fell.
Most of what we know comes from one UK survey. It asked 517 adults aged 40 to 90 about their jobs and money. Some were autistic (395) and some were not (122). Both groups retired, or planned to retire, at about the same age.1
The autistic adults reached it in a different way. Fewer had made detailed plans (21.7%, against 41.8% of the other group). Far more had made no plans at all (41.1%, against 12.3%).1
They had less full-time work before retiring (73.9%, against 82.4%). Fewer had a workplace pension (70.4%, against 95.1%). They were more likely to say their money was not stable (44.1%, against 27.0%).1
Many said no one had clearly explained retirement or pensions to them. They worried about being lonely, losing their routine and money. Some looked forward to more time for their interests.1
Another study interviewed 12 autistic adults aged 56 to 70. Some found planning and adjusting hard. Others were glad to leave a difficult job. Many said they had little support after they stopped working.2
One more study followed 341 autistic adults in the US for 22 years. For those without an intellectual disability, paid work went up until midlife, then went down. Those with an intellectual disability worked few paid hours at any age.3
Three studies from three different research groups, each looking at a single set of people: a UK survey, a small interview study and a long-running US community cohort. None is a population sample, and the survey and the interviews drew self-selected volunteers.
The UK survey and the interviews came from self-selected volunteers who answered adverts or were on research registers. People who take part in autism research may differ from autistic adults in general. The survey above pools midlife and old age in single figures. One 2026 recommendation in the journal Autism argues that this literature should stop treating everyone over 50 as a single "older adult" group and keep midlife (40 to 64) apart from old age (65 and over), so the survey's averages may hide differences between the two.4
Three studies, each with one group of people who chose to take part. None is a random sample of all autistic people.
Lifelong difficulty with learning and everyday skills, starting in childhood.
Who cares for autistic adults as they age Emerging
No one has counted, across a whole country, who looks after autistic adults as they grow older, and what exists around the question is thin. A 2024 scoping review of 35 studies of older autistic adults found that 57% looked at only one of five areas of healthy aging and that none looked at all five; the authors conclude that healthy aging in this group is largely understudied.5
Who can get care is uneven too. A 2026 scoping review found only eight studies on racial and ethnic disparities among autistic adults aged 60 and over, most of them from the United States. They describe older autistic adults from minority groups as less likely to be dually eligible for both Medicare and Medicaid, as having more physical and psychological conditions but being less likely to be treated for them, and as using outpatient services less and having less access to supportive accommodations than White older autistic adults.6
A 2025 "call for support" article, drawing on earlier research, the authors' own experience and interviews with 18 older adults diagnosed with autism later in life, argues that a late diagnosis in later life calls for rethinking aging, identity, relationships and support, and that services should be tailored to this group.7
A 2025 scoping review of autism and aging found only a limited number of studies that addressed the subject in depth. Among the difficulties it reports are inequalities in health care and problems integrating into society.8
Research on who provides day-to-day care is mostly about parents who support their autistic adult children, and is covered in Autistic adults and their parents. No population study found as of October 2026 has counted how much unpaid care autistic adults receive in later life, or from whom.
No one has counted, across a whole country, who looks after autistic adults as they grow older. What we have is thin. A 2024 review looked at 35 studies of older autistic adults. It found that 57% looked at only one of five parts of healthy aging. None looked at all five. The authors call this subject understudied.5
Who gets care is uneven. A 2026 review found only 8 studies about race and care for autistic adults aged 60 and over. Most were from the United States. Autistic adults from minority groups were less likely to get both Medicare and Medicaid. They had more health problems but were less likely to be treated for them. They also used fewer services than White autistic adults.6
A 2025 article calls for better support for people diagnosed with autism late in life. It says care should fit this group.7
A 2025 review found only a few studies on autism and aging. It reports unfairness in health care and trouble joining in society.8
Research on who gives everyday care is mostly about parents looking after their adult children. That is covered in Autistic adults and their parents. No study found as of October 2026 has counted who gives unpaid care to autistic adults later in life.
Reviews of a small literature, most of it looking at a single subject, and one review that found only eight studies. These studies are about care services and who gets them, not about who provides day-to-day care.
US public health insurance: Medicaid for people with low incomes or disabilities, Medicare mainly for people aged 65 and over.
These are reviews of a small set of studies. No one has counted who gives unpaid care to autistic adults as they get older.
US public health insurance. Medicaid is for people with low incomes or disabilities. Medicare is mainly for people aged 65 and over.
Where older autistic adults live Emerging
Where older autistic adults live, and whether it suits them, is barely studied, and most of what exists is about residential care. In a questionnaire completed by 105 autistic people, three areas emerged where their needs may conflict with how care homes are usually designed: sensory challenges, interactions with others, and day-to-day life. The article names the elements at stake: a building's location and connections, its size, getting around and finding your way, open-plan or separate rooms, the amount of private space, and the design of shared space. It argues that older autistic people often depend on fragile informal care or are placed in settings that do not suit them, such as long-stay hospital wards.9
The move into a care setting is hard to get right. One account follows a mother's blog posts over the 100 days after her autistic son, who has an intellectual disability, moved from the family home into a residential setting. It describes both the difficulties and the gains, and suggests that a good transition involves supporting the parents as well as drawing on them.10
In the retirement interviews described above, worries about aging often concerned declining health and the possibility of having to move into residential care.2
We know little about where older autistic adults live or whether it suits them. Most research is about care homes. A survey asked 105 autistic people what is hard in a care home. Three things stood out: the senses, other people, and daily life. Care homes are often designed in ways that clash with autistic needs.9
Moving into a care home is also hard to get right. One account follows a mother's blog for the 100 days after her autistic son moved out of the family home. Her son has an intellectual disability. She describes the hard parts and the good parts. She says a good move looks after the parents too.10
In the retirement interviews, many worried about their health getting worse. Some worried about having to move into a care home.2
One questionnaire of 105 autistic people of mixed ages, one single-case account written from a parent's view, and a theme from the retirement interviews. The samples are small and not specific to older autistic adults.
One survey of 105 autistic people, one story from a parent, and one finding from the retirement interviews. The groups were small.
Loneliness and social connection Emerging
Loneliness and isolation run through autistic people's accounts of growing older. In interviews with 13 people with autism aged over 50, loneliness, isolation and a yearning for connection were reported as longstanding and near-universal; the study's three themes were difference, life review and a longing for connection.11
In a cross-sectional study of 111 adults aged 40 to 86 (53 autistic, 58 non-autistic), people who were less socially connected had more autistic traits and did less well on tasks of theory of mind, once age and mental-health symptoms were taken into account. The link between autistic traits and isolation was weaker once theory of mind was taken into account, so it accounted for part of it. Everyone was measured once, so the study shows that these go together, not which one leads to the other.12
Social support and quality of life relate to each other over time. In a two-year study of 209 autistic adults aged 40 and over in the United States, those who started with a better quality of life reported more emotional support two years later, but emotional support at the start did not predict a better quality of life later. Feeling well supported and having a good autism-specific quality of life each predicted the other two years on. Practical help at the start, on the other hand, predicted a lower general quality of life two years later, a result the authors call unexpected; the study cannot tell whether practical help simply marks a greater need for it.13
Loneliness may also mean something a little different to autistic adults. In a small qualitative study, 13 verbal autistic adults and 5 autism professionals revised a standard model of loneliness for autism; the study left out people who do not speak. They said it needed to separate being satisfied with your relationships from simply having them, and how often you see people from whether they are there when you need them, and to add social exhaustion, a feeling of being different, and animals.14
Loneliness comes up again and again when autistic people talk about getting older. One study interviewed 13 people with autism aged over 50. They described being lonely and apart, and wanting to connect. This had lasted a long time.11
Another study compared 111 adults aged 40 to 86. Fifty-three were autistic and 58 were not. People who felt less connected had more autistic traits. They also did less well on tests of theory of mind. That is the skill of working out what someone else is thinking. Theory of mind explained part of the link. Everyone was measured once, so the study cannot show what causes what.12
Support and feeling good about life seem to affect each other over time. In a two-year study, 209 autistic adults aged 40 and over were asked twice. Those who felt better about life at the start got more emotional support two years later. But support at the start did not predict feeling better later. Feeling supported and feeling good about being autistic each predicted the other.13 Practical help at the start went with feeling worse about life later. The authors did not expect this. Maybe people who need more help get more of it.13
Loneliness may mean something a little different to autistic adults. In one small study, 13 autistic adults who speak and 5 autism professionals looked at a standard idea of loneliness. They said it should tell apart being happy with your friends from just having them. It should also tell apart seeing people often from knowing they are there when you need them. They added feeling worn out by people, feeling different, and animals.14
Two small qualitative studies, one cross-sectional study and one two-year study, all in self-selected samples. Each measured each person once or twice; none can show which comes first.
A study that measures each person once, rather than following the same people over time.
The skill of working out what another person is thinking or intends.
Two small interview studies, one study that measured people once, and one that measured them twice. None can show what causes what.
Planning for later life and who is asked Emerging
Planning for later life looks thinner among autistic adults, and a lack of clear information is part of the reason. In the UK survey described above, many autistic participants said they had not been given clear information about what retirement involves or how pensions work, and autistic participants were far more likely than non-autistic participants to have made no plans at all.1
Who will act for a person in later life, and who they can ask, is a worry autistic adults name themselves. In the retirement interviews, a lack of support during retirement was a common theme.2 The "call for support" article goes further: its authors argue that support should be tailored to older adults diagnosed later in life, and they report a conversational tool, co-created with 18 older autistic adults, to help them set out their own boundaries and wishes.7
No study found as of October 2026 has examined autistic adults' own wills or advance decisions. Planning has mostly been studied from the family's side, in parents planning for an adult child's future; that work is in Autistic adults and their parents.
Autistic adults plan less for later life. A lack of clear information is part of why. In the UK survey, many said no one had explained retirement or pensions clearly to them. They were much more likely than the other group to have made no plans.1
Who will help in later life, and who they can ask, is something autistic adults worry about. In the retirement interviews, many said they had little support after retiring.2 The 2025 article about late diagnosis says support should fit people diagnosed late in life. It also made a tool with older autistic adults to help them say what they need.7
No study found as of October 2026 has looked at autistic adults' own wills or advance decisions. Planning has mostly been studied from the parents' side. That work is in Autistic adults and their parents.
One survey, one small interview study and one attributed article. The absence claim is dated and rests on the search recorded in the ledger.
One survey, one small interview study, and one article that gives an opinion.
In the community Community
Autistic writers describe the plain worry of who will look after them. Barb Cook, writing about growing older, asks: "Who will look after us, especially if you are, like me, childless and with no close family?" She describes watching her father's last months in a nursing home, and writes that the only way to make sure carers know your needs is "to start planning before it is too late."c1
Retirement, for some, is a return to what work crowded out. David Plummer, who is retired, describes going back to interests he had set aside, "a luxury that only youth or retirement could afford", and writes that he is surprised how many of his peers stop coding entirely once they retire.c4
Loneliness comes up too, and so does its absence. Lydia X. Z. Brown writes that "this sense of constant alienation, isolation, separation, and loneliness turns out to be incredibly common" among autistic people, and that the feeling has not left her in adulthood.c2 Corum, writing at 50, describes the opposite: "Some may see my life as a lonely experience, but I don't. I enjoy its simplicity and not having to deal with other people too much."c3
Some writers worry about who will care for them. Barb Cook, who has no close family, asks who will "look after us" as people get older. She watched her father in a nursing home. She writes that you have "to start planning before it is too late" so carers know what you need.c1
For some, retiring means going back to what work pushed aside. David Plummer is retired. He went back to old interests, "a luxury that only youth or retirement could afford". He is surprised how many of his friends stop their old work completely.c4
Loneliness comes up too, and so does enjoying being alone. Lydia X. Z. Brown writes that feeling "alienation, isolation, separation, and loneliness" is "incredibly common" for autistic people. She says it has not left her as an adult.c2 Corum, writing at 50c3, says "Some may see my life as a lonely experience", but he does not.
How autistic writers describe retirement, care and getting older. These are descriptions and arguments, not research findings.
How autistic writers describe retiring, getting care and growing older. These are their experiences and views, not research findings.
Sources
Research
- 1Kowalczyk Z, Fadzil AHA, Ward I, Happé F, Stewart GR. 'A New Pace of Life': A Mixed-Methods Exploration of Retirement Plans, Preparations and Experiences in Middle-Aged and Older Autistic and Non-Autistic Adults. Autism, 2026. https://doi.org/10.1177/13623613261431925
- 2Davies J, Matthews R, Romualdez AM, Pellicano E, Remington A. "Retirement Is One Hell of a Change": Autistic People's Experiences of Retiring. Autism in Adulthood, 2026. https://doi.org/10.1089/aut.2023.0155
- 3Hickey EJ, DaWalt LS, Hong J, Taylor JL, Mailick MR. Trajectories of Competitive Employment of Autistic Adults through Late Midlife. Healthcare, 2024. https://doi.org/10.3390/healthcare12020265
- 4Stewart GR. Distinguishing midlife and old age: A recommendation for autism researchers. Autism, 2026. https://doi.org/10.1177/13623613251396316
- 5Stringfellow MK, Fields NL, Lee K, Anderson KA, Brokaw E. Healthy Aging and Older Adults With Autism: A Scoping Review. The Gerontologist, 2024. https://doi.org/10.1093/geront/gnae026
- 6Yuan J, Guo T, Rozear H, Dupre ME, Malhotra R, Xu H. Racial and ethnic disparities among older adults with autism spectrum disorder: a scoping review. Aging & Mental Health, 2026. https://doi.org/10.1080/13607863.2026.2612742
- 7Blok M, Jacobs FW, Videler AC, Geurts HM, Teunisse JP. From diagnosis to dialogue: a call for support of older adults with a late autism diagnosis. The Gerontologist, 2025. https://doi.org/10.1093/geront/gnaf181
- 8Mokhwelepa LW, Sumbane GO, Ngwenya MW. The dynamic trajectory of autistic life and its changing challenges: a scoping review. BMC Psychiatry, 2025. https://doi.org/10.1186/s12888-025-07212-5
- 9Ponting E. The Architectural Needs and Preferences of Autistic People Versus Gerontological Residential Care Facility Design Practices. Autism in Adulthood, 2026. https://doi.org/10.1089/aut.2024.0021
- 10Holloway E. The first 100 days: Parental perceptions of the transition to residential care of an autistic adult with intellectual disability. Journal of Intellectual Disabilities, 2026. https://doi.org/10.1177/17446295261477155
- 11Hickey A, Crabtree J, Stott J. 'Suddenly the first fifty years of my life made sense': Experiences of older people with autism. Autism, 2018. https://doi.org/10.1177/1362361316680914
- 12Lo GHM, Dale C, Happé F, Stewart GR. Theory of Mind Mediates the Association Between Autistic Traits and Social Isolation in Middle-Aged and Older Adults. Autism Research, 2025. https://doi.org/10.1002/aur.70036
- 13Song W, McQuaid GA, Charlton RA, Wallace GL. Longitudinal Association Between Social Support and Quality of Life Among Middle-Aged and Older Autistic Adults. Autism, 2026. https://doi.org/10.1177/13623613261446878
- 14Schiltz H, Su D, Lerner J, Mazefsky C, Lord C. Development of a Conceptual Model of Loneliness in Verbal Autistic Adults Using Qualitative Content Analyses. Journal of Autism and Developmental Disorders, 2025. https://doi.org/10.1007/s10803-025-07005-5
Community sources
- c1Cook B, Garnett M, eds. Spectrum Women: Walking to the Beat of Autism. Jessica Kingsley Publishers, 2018. Chapter 2, "Growing up on the Spectrum".
- c2Ballou EP, daVanport S, Onaiwu MG, eds. Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity. Beacon Press, 2021. Chapter "On Surviving Loneliness and Isolation, and Learning to Live with Loss".
- c3Ratcliffe A, ed. Our Autistic Lives: Personal Accounts from Autistic Adults Around the World Aged 20 to 70+. Jessica Kingsley Publishers, 2019. Part "Our 50s", chapter "Corum".
- c4Plummer DW. Secrets of the Autistic Millionaire. Self-published, 2021. Chapter "Back to Coding on the Side".