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Adults on the spectrum

Growing older on the spectrum

Who is it for? For people on the autism spectrum in midlife and older age and for their relatives.

In brief

Little is known about growing older on the autism spectrum. A review found only 12 qualitative papers (2013 to 2024) for people aged 50 and over and named two large themes: growing older with autism (self-image, connectedness, joy and meaning, health and care) and gaps in care (shortcomings in services, gaps in knowledge among professionals). [1] The authors call for more research, better services and training of professionals. [1] A large US study found a shorter life expectancy in people with autism in a particular insurance group; it shows no causes and cannot be transferred to Germany. [2]

This English translation was produced with AI assistance and has not yet been independently reviewed.

What research shows on older people on the spectrum

The scoping review (published 2026) covered studies on health, health care and quality of life of people aged 50 and over, with and without intellectual disability, and of people who support them. The analysis of the 12 papers yielded themes on self-image and identity, connectedness, experiencing joy and meaning and dealing with health and health care; in addition gaps in care, factors that influence the effect of support, and gaps in knowledge among professionals. [1] These are summaries of qualitative papers; they say nothing about frequencies.

Health and care

The study on life expectancy from the USA (Medicaid data 2000 to 2020, over two million people with autism) found a life expectancy about 5.6 years shorter than for other Medicaid enrollees; it shows a link, not causes, and the group is not typical of all people on the spectrum. [2] More on this: Life expectancy in autism: what a large US study shows and what it does not. This is not a statement for the individual case and not for Germany. Taking co-occurring conditions seriously is, however, a concern of the guideline too; see Common co-occurring conditions.

Housing and support in older age

For supported housing of adults, the 2021 guideline described, among other things, a daily structure and continuity of staff, reduction of stimuli where needed, places to withdraw, trained staff and involvement of carers and relatives. [3, Rec. 117] It expired on 23.03.2026 [4] and contained no recommendations of its own for older age. More: Living with autism. On care in older age (care level): Care level for autism.

What do we know – what is still open?

Finding (review, only abstract read): The themes named from 12 qualitative papers on people aged 50 and over. [1]

Observation (one study, USA): Shorter life expectancy in a Medicaid group, causes unknown; the authors name limitations (group not representative, cross-section). [2]

Open:

  • How health, cognition and everyday life develop in older age on the spectrum is not described in the sources read.
  • Which forms of housing and care fit best has not been studied.
  • On Germany, we have read no studies on growing older.
  • On the effectiveness of services for older people, the sources read give no information.

What else you should know

  • Keep health in view early: Regular doctor visits and check-ups make sense for everyone; for preparation: Preparing well for doctor visits and hospital stays.
  • Advice: On benefits and forms of housing, the EUTB among others advises: Finding advice.
  • Not covered: dementia, menopause, pension and guardianship law in older age.

Note: This article offers general information. It does not replace medical advice.

Sources and literature

  1. Nicholas DB, Nelson H, Shafai F, Edelson SM, Bal V, Lawson W, Bauman M, Hendren R, Trollor JN. Examining the Lived Experiences of Older Autistic Adults: A Synthesis Review of Qualitative Literature. Journal of Autism and Developmental Disorders 2026 (online 09.05.2026). https://doi.org/10.1007/s10803-026-07343-y – Scoping review
  2. Li G, DiGuiseppi CG, Blanchard A, Russell MT, Ing C. Autism Spectrum Disorder and Life Expectancy Among Medicaid Beneficiaries. JAMA Network Open 2026 (online 10.09.2026). https://doi.org/10.1001/jamanetworkopen.2026.33251 – Observational study
  3. DGKJP, DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 2: Therapie. S3-Leitlinie, AWMF-Reg.-Nr. 028-047, Stand Text 02.05.2021 (Empf. 117). – Guideline (in German); expired on 23 March 2026 (see no. 4)
  4. DGKJP. Aktuelle Leitlinien (Eintrag 028-047: „Gültig bis 23.03.2026“). https://www.dgkjp.de/wissen/aktuelle-leitlinien/ – Professional society (website in German)

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