| Reading companion Autistic grief: What should we consider? What the research and the Autistic community say about Autistic older adults, and what it means for your practice |
| How to use this companion This companion was designed to accompany a talk at KMMHs Nov 2026 Older Adult Clinical Summit. Aucademy thought it was also useful for Autistic people and other services. You do not need to read it all at once. Each section stands on its own. Each section has three parts: what we know, what this means in practice, and where to read more. Hard words are in bold and explained in the word list on page 3. All sources are real and checked. Full references are at the end. |
Why this matters
Grief is something almost all older adults will face. For Autistic older adults, grief can look different, and it can be missed or misread.
Quite simply, many older Autistic adults have never been recognised as Autistic. When someone dies, the change, uncertainty and loss of support can shake their whole system. This can look like depression, “decline” or even dementia.
In our session, a lived expert shared their own experience of grief. This companion sets out the wider evidence, so you can take it back to your team.
In this companion
- Who are older Autistic adults?
- Sensory experience
- Monotropism, uncertainty and change
- Executive functioning, support and burnout
- Menopause
- Physical health, dementia and life expectancy
- Mental health, loneliness and suicide
- Grief and bereavement
- Getting healthcare right
Then: practical tips, questions for your team, where to find support, and the full reference list.
Word list
These words are used in this companion. We use identity-first language (“Autistic person”), as most Autistic people prefer.
| Autistic burnout | Long-term exhaustion, loss of skills and lower tolerance to stimulation. It comes from long-term life stress and a mismatch between what is expected and what a person can do, without enough support (Raymaker et al., 2020). |
| Autistic inertia | Finding it hard to start, stop or switch between activities, even when you want to. |
| Double empathy problem | Misunderstandings between Autistic and non-Autistic people go both ways. It is a mismatch, not a one-sided “deficit” (Milton, 2012). |
| Executive functioning | The thinking skills we use to plan, organise, start tasks, remember and manage time. |
| Intolerance of uncertainty | Finding not knowing what will happen very hard to cope with. It is strongly linked to anxiety in Autistic people (Jenkinson et al., 2020). |
| Masking | Altering natural Autistic ways of being to project an acceptable version of self. Masking over many years is exhausting, and linked to suicidality. |
| Meltdown and shutdown | What can happen when someone is overwhelmed. A meltdown is an outward release; a shutdown is an inward one, such as going quiet or being unable to speak. |
| Monotropism | Autistic attention goes deeply into fewer things at once. Switching attention takes more time and energy (Murray et al., 2005). Monotropism helps to explain sensory and communication differences of Autistic people, as well as overwhelm and meltdowns/shutdowns when the attention tunnel in disrupted. |
| Needs-led support | Support based on what a person needs, without waiting for a formal diagnosis. |
| Shared executive functioning | When someone close to an Autistic person holds some of their executive functioning, such as reminders to eat and drink. This idea comes from clinical practice, not yet from research. |
| Window of tolerance | The zone where a person can cope and think clearly. It is a term from trauma-informed practice (Siegel, 1999). Many Autistic people describe theirs as smaller. |
1. Who are older Autistic adults?
What the research and community tell us
- There is no agreed age for “older”. Most research uses 50 and over (Mason et al., 2022). Some studies group “middle and older” Autistic adults from their early 40s (Charlton et al., 2024).
- Most older Autistic adults have never been recognised. In England, about 1 in 6,000 people aged 70 and over has a recorded autism diagnosis, compared with about 1 in 34 children aged 10 to 14 (O’Nions et al., 2023).
- People diagnosed after 50 often look back over their lives. They come to see past struggles as part of being Autistic, rather than as personal failings (Hickey et al., 2018).
- Research on older Autistic adults is growing fast, but was still only 0.4% of autism research over a decade. We know least about Autistic older adults with a learning disability, quality of life, and support needs (Mason et al., 2022).
| What this means in practice Many of the Autistic older adults you meet will not know they are Autistic.A late diagnosis can bring relief and grief at the same time: grief for the life that might have been.You do not need a diagnosis to make adjustments. Support can be needs-led. |
| Read more Hickey et al. (2018): experiences of older Autistic people after diagnosis.Mason et al. (2022): what research on older Autistic adults covers, and what it misses.O’Nions et al. (2023): how many Autistic people in England are undiagnosed. |
2. Sensory experience
What the research and community tell us
- Autistic people do not “grow out of” sensory differences. In 210 Autistic adults aged 42 to 80, sensory sensitivities stayed the same across middle and older age (Charlton et al., 2024).
- At the same time, hearing and sight decline with age, and this affects how sensory input is experienced (Charlton et al., 2024).
- Many Autistic people describe a smaller window of tolerance, so overwhelm can come sooner. This is Autistic community and clinical understanding, rather than a tested research finding.
| What this means in practice Do not expect sensory needs to ease with age.Funerals, hospitals, wakes and busy family gatherings can be very hard sensory environments.Offer quieter spaces, fewer people, warning about noise and lighting, and time to leave and come back. |
| Read more Charlton et al. (2024): sensory sensitivities in middle and older aged Autistic adults. |
3. Monotropism, uncertainty and change
What the research and community tell us
- Monotropism means Autistic attention goes deeply into fewer things at once. Switching takes more time and energy (Murray et al., 2005).
- One way to picture it: the Autistic brain plugs all of its 100 cables into one thing. To switch, every cable has to be unplugged and plugged in somewhere else.
- Intolerance of uncertainty is strongly linked to anxiety in Autistic people (Jenkinson et al., 2020).
- Autistic adults describe grief as change, loss and uncertainty all at once (Pang, 2023).
| What this means in practice A death often changes many routines at once: who visits, where meals happen, who drives, where family meets at Christmas.The practical changes may be harder than the emotional ones. Ask about both.Give clear, honest information about what will happen next, and when. Prepare people for transitions, big and small. |
| Read more Murray et al. (2005): the original paper on monotropism.Jenkinson et al. (2020): intolerance of uncertainty and anxiety in Autistic people. |
4. Executive functioning, support and burnout
What the research and community tell us
- Autistic men aged 60 and over, and the people close to them, reported more everyday executive functioning challenges than non-Autistic men, even when clinic tests showed no difference (Geurts et al., 2020).
- From clinical practice: an Autistic person may share their executive functioning with someone close to them. If that person dies, or steps back to grieve, “the whole system can shake”.
- Autistic burnout involves long-term exhaustion, loss of skills and lower tolerance to stimulation (Raymaker et al., 2020).
- Bereavement may raise the risk of Autistic burnout (Pang, 2023). Some skills can come back after burnout, but some Autistic people find that not everything does.
| What this means in practice Tests in a clinic may miss what is hard at home. Ask the person and those close to them about everyday life.After a death, ask: who used to help with planning, reminders, meals, drinks, appointments and money?Before assuming decline, ask: is this grief, dementia, Autistic burnout, an Autistic person whose support system has changed, or an Autistic person never recognised? |
| Read more Geurts et al. (2020): executive functioning in Autistic men aged 60 and over.Raymaker et al. (2020): defining Autistic burnout, led by Autistic researchers. |
5. Menopause
What the research and community tell us
- “Menopause was discussed as heightening pre-existing and generating new cognitive, social, emotional and sensory difficulties” (Moseley et al., 2020).
- For some, menopause is when a lifetime of masking breaks down, and when they recognise they are Autistic (Moseley et al., 2020; Karavidas & de Visser, 2022).
- Autistic people reported more barriers to medical help with menopause, and clinicians not adapting how they communicate (Piper & Charlton, 2025).
- These are small, qualitative studies, so more research is needed.
| What this means in practice Menopause and bereavement can happen at the same time, and add to each other.Give clear, factual information, in writing where possible.Changes in coping in midlife may be a sign that someone is Autistic and has never been recognised. |
| Read more Moseley et al. (2020): “When my autism broke”.Karavidas and de Visser (2022): Autistic experiences of menopause.Piper and Charlton (2025): comparing Autistic and non-Autistic menopause experiences. |
6. Physical health, dementia and life expectancy
What the research and community tell us
- In a large US study of Autistic adults aged 65 and over, recorded rates of many conditions were much higher than in non-Autistic peers. These included dementia and other cognitive disorders, Parkinson’s disease, epilepsy, heart disease and osteoporosis (Hand et al., 2020).
- That study used insurance records. The authors note that missed diagnoses and clinician bias may affect the figures.
- Autistic adults have high rates of parkinsonism, which may be partly linked to long-term antipsychotic medicine (Starkstein et al., 2015).
- Dementia screening tools were built around non-Autistic people. Lifelong Autistic differences in memory, attention and language can be hard to tell apart from new decline (Stewart et al., 2026).
- UK estimates suggest Autistic people without a learning disability live around 6 years less than others. The often-quoted “16 years” figure is likely wrong (O’Nions et al., 2024).
| What this means in practice Use tools such as BASELINE and SPECTRUM, developed by registered nurse Niall O’Loingsigh to support earlier recognition, clearer recording and more confident decision making about dementia in Autistic patients and/or patients with a learning disability. https://api.joinblink.com/file/a-78062a5b-7df8-468d-861a-d7baf14dc497 Find out what is lifelong for the person before deciding what is new.Review long-term medicines, especially antipsychotics.Grief can look like cognitive decline. Allow time and support before drawing conclusions. |
| Read more Hand et al. (2020): health conditions in Autistic adults aged 65 and over.O’Nions et al. (2024): life expectancy for Autistic people in the UK.Stewart et al. (2026): overlap between autism and dementia in cognitive testing. |
7. Mental health, loneliness and suicide
What the research and community tell us
- In nearly 10,000 UK adults aged 50 and over, people with high Autistic traits had more suicidal thoughts. This link was explained by depression, anxiety, PTSD, loneliness and having few social contacts (Nuzum et al., 2026).
- This study measured Autistic traits through a short survey, not diagnosis.
- Loneliness and a lifelong longing for connection are common for older Autistic people. Autistic groups give belonging and acceptance (Hickey et al., 2018).
- Autistic people may have smaller support networks, so losing one person can mean losing much of their support.
| What this means in practice Simply put: connection and good mental health support protect people, and they are things services can change.After a death, check who is still around, and help people find Autistic community and peer support.Ask directly and clearly about suicidal thoughts. Clear questions are easier to answer. |
| Read more Nuzum et al. (2026): Autistic traits and suicidality in midlife and older age.Hickey et al. (2018): loneliness and connection for older Autistic people. |
8. Grief and bereavement
What the research and community tell us
- Autistic adults describe grief with more masking, sensory changes, Autistic inertia, shutdown and meltdown (Pang, 2023).
- Grief may be delayed, intense, or not look as others expect. Some people may not seem to feel grief at first (National Autistic Society, 2020).
- Planning, organising and concentrating can become harder (National Autistic Society, 2020).
- Talking about the person who died, and keeping a sense of connection with them, helps Autistic adults make sense of loss (Pang, 2023).
| What this means in practice Do not judge grief by how it looks. No tears does not mean no grief.Use clear words: say “died”, not “lost”, “passed away” or “gone to sleep”. Euphemisms can confuse and upset.Explain what to expect at funerals and hospital visits. Photos or visits beforehand can help.Give time to talk about the person, as often as needed. |
| Read more National Autistic Society (2020): a bereavement guide for Autistic adults.Pang (2023): how Autistic adults experience bereavement. |
9. Getting healthcare right
What the research and community tell us
- In a survey of over 500 Autistic adults, 80% found it hard to visit a GP, compared with 37% of non-Autistic adults (Doherty et al., 2022).
- The biggest barriers were deciding whether to go, booking by phone, not feeling understood, communication, and the waiting room (Doherty et al., 2022).
- These barriers were linked to untreated and late-diagnosed health conditions (Doherty et al., 2022).
- There were no differences between people with a formal diagnosis and those who identified as Autistic (Doherty et al., 2022).
| What this means in practice Offer online or text booking, first or last appointments, and a quiet place to wait.Let people send their reasons for an appointment in writing beforehand.As the authors put it: “Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.” |
| Read more Doherty et al. (2022): barriers to healthcare for Autistic adults. |
Supporting an Autistic person who is grieving
A quick checklist, drawn from the sections in this companion.
- Think Autistic. Could this person be Autistic, even without a diagnosis?
- Ask about the practical, not just the emotional. What has changed in their routine?
- Find the gaps. Who held some of their executive functioning, and who does that now?
- Use clear words. Say “died”. Avoid euphemisms.
- Prepare for change. Explain what will happen, when and where.
- Mind the senses. Funerals, wards and waiting rooms can overwhelm.
- Do not rush to dementia. Ask whether this could be grief, burnout or a changed support system.
- Support connection. Help people find Autistic community and peer support.
- Work needs-led. Adjust now; do not wait for a diagnosis.
| Questions to take back to your team How do we notice when someone we support might be Autistic?Do our assessments ask who helps with everyday life, and what changes when they die?How do we tell the difference between grief, burnout and cognitive decline?Are our spaces and appointment systems sensory-friendly?What is one change we could make this month? |
Where to find support and learn more
For everyone
- Kent and Medway LD&A Community of Practice web page: resources, briefings and contacts. https://aucademy.co.uk/kent-medway-learning-disability-autism-community-of-practice/
- National Autistic Society: bereavement guide for Autistic adults.
- Aucademy: “Start here: building your Autistic profile”, an Autistic-led resource. https://aucademy.co.uk/building-your-autistic-profile-brief-starting-page/
| If this companion has raised difficult feelings Some sections talk about suicide and loss. If you need to talk to someone, you can call Samaritans free on 116 123, at any time, day or night. |
References
Charlton, R. A., McQuaid, G. A., & Wallace, G. L. (2024). Exploring the effects of age and sex on sensory sensitivities in middle and older aged Autistic adults. Research in Autism Spectrum Disorders, 117, Article 102460. https://doi.org/10.1016/j.rasd.2024.102460
Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for Autistic adults: A cross-sectional study. BMJ Open, 12(2), Article e056904. https://doi.org/10.1136/bmjopen-2021-056904
Geurts, H. M., Pol, S. E., Lobbestael, J., & Simons, C. J. P. (2020). Executive functioning in 60+ Autistic males: The discrepancy between experienced challenges and cognitive performance. Journal of Autism and Developmental Disorders, 50(4), 1380-1390. https://doi.org/10.1007/s10803-020-04368-9
Hand, B. N., Angell, A. M., Harris, L., & Carpenter, L. A. (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, Autistic older adults. Autism, 24(3), 755-764. https://doi.org/10.1177/1362361319890793
Hickey, A., Crabtree, J., & Stott, J. (2018). ‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism. Autism, 22(3), 357-367. https://doi.org/10.1177/1362361316680914
Jenkinson, R., Milne, E., & Thompson, A. (2020). The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism, 24(8), 1933-1944. https://doi.org/10.1177/1362361320932437
Karavidas, M., & de Visser, R. O. (2022). “It’s not just in my head, and it’s not just irrelevant”: Autistic negotiations of menopausal transitions. Journal of Autism and Developmental Disorders, 52(3), 1143-1155. https://doi.org/10.1007/s10803-021-05010-y
Mason, D., Stewart, G. R., Capp, S. J., & Happé, F. (2022). Older age autism research: A rapidly growing field, but still a long way to go. Autism in Adulthood, 4(2), 164-172. https://doi.org/10.1089/aut.2021.0041
Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008
Moseley, R. L., Druce, T., & Turner-Cobb, J. M. (2020). “When my autism broke”: A qualitative study spotlighting Autistic voices on menopause. Autism, 24(6), 1423-1437. https://doi.org/10.1177/1362361319901184
Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139-156. https://doi.org/10.1177/1362361305051398
National Autistic Society. (2020, August 20). Bereavement: A guide for Autistic adults. https://www.autism.org.uk/advice-and-guidance/topics/mental-health/bereavement/Autistic-adults
Nuzum, E., Medeisyte, R., Eshetu, A., Hoare, S., Corbett, A., Ballard, C., Hampshire, A., O’Nions, E., John, A., Stewart, G. R., & Stott, J. (2026). Autistic traits and suicidality in midlife and old age: Investigating mediating effects of mental health and social connectedness. Nature Mental Health. https://doi.org/10.1038/s44220-025-00579-0
O’Nions, E., Lewer, D., Petersen, I., Brown, J., Buckman, J. E. J., Charlton, R. A., Cooper, C., El Baou, C., Happé, F., Manthorpe, J., McKechnie, D. G. J., Richards, M., Saunders, R., Zanker, C., Mandy, W., & Stott, J. (2024). Estimating life expectancy and years of life lost for Autistic people in the UK: A matched cohort study. The Lancet Regional Health – Europe, 36, Article 100776. https://doi.org/10.1016/j.lanepe.2023.100776
O’Nions, E., Petersen, I., Buckman, J. E. J., Charlton, R., Cooper, C., Corbett, A., Happé, F., Manthorpe, J., Richards, M., Saunders, R., Zanker, C., Mandy, W., & Stott, J. (2023). Autism in England: Assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. The Lancet Regional Health – Europe, 29, Article 100626. https://doi.org/10.1016/j.lanepe.2023.100626
Pang, J. (2023). How Autistic adults experience bereavement: An interpretative phenomenological study [Doctoral thesis, Middlesex University and New School of Psychotherapy and Counselling]. Middlesex University Research Repository. https://repository.mdx.ac.uk/item/112z8w
Piper, M. A., & Charlton, R. 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
Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining Autistic burnout. Autism in Adulthood, 2(2), 132-143. https://doi.org/10.1089/aut.2019.0079
Siegel, D. J. (1999). The developing mind: Toward a neurobiology of interpersonal experience. Guilford Press.
Starkstein, S., Gellar, S., Parlier, M., Payne, L., & Piven, J. (2015). High rates of parkinsonism in adults with autism. Journal of Neurodevelopmental Disorders, 7, Article 29. https://doi.org/10.1186/s11689-015-9125-6
Stewart, L., McGeown, W. J., Delafield-Butt, J., & Parra, M. A. (2026). Commonalities and divergences in the cognitive profiles of autism and dementia: Protocol for a narrative literature review. JMIR Research Protocols, 15, Article e82349. https://doi.org/10.2196/82349
| About this companion Produced by Dr Chloe Farahar of the Learning Disability and Autism (LD&A) Programme, Kent and Medway Mental Health NHS Trust, for the Older Adult Clinical Summit, November 2026. Evidence checked October 2026. |
-end-