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Cited by 131Autism Spectrum Disorder ResearchFamily and Disability Support ResearchAging, Elder Care, and Social Issues

‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism

Open access
Hickey, Aoife, Crabtree, Jason, Stott, Joshua·2018·Autism
DOI 10.1177/1362361316680914
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Abstract

Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger age groups in terms of lived experience and need for greater support, particularly with respect to reducing isolation and improving access to diagnosis.

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Crossref · 10.1177/1362361316680914

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  • Isolation and loneliness were exacerbated by age.

    “Isolation and loneliness exacerbated by age.”

    From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Hickey et al. (2018)

    The ‘Isolation and loneliness’ passage describes these experiences as ‘no less distressing with advancing years,’ not as worsening with age. The Discussion adds that difficulties persisted across the lifespan and that themes did not vary substantially with participant age. (LLM, conf=0.84)

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  • The formation of autistic self-identity was facilitated by meeting autistic peers, building upon self-understanding through comparisons.

    “The formation of autistic selfidentity was facilitated by meeting autistic peers, building upon self-understanding through comparisons (Bargiela et al., 2016; Hickey et al., 2018; Lewis, 2016b; Punshon et al., 2009; Tan, 2018).”

    From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Hickey et al., 2018

    The post-diagnosis ‘Reaching out’ passages (pp. 22–24) report that meeting autistic peers provided shared understanding and opportunities to learn about themselves through comparison. But ‘Access to diagnosis’ says participants tended to separate autism from their existing sense of self rather than incorporate an autistic identity, so the claim about forming that identity goes beyond the findings. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • Research conducted in the UK dominates the topic area of experiences of diagnosis.

    “Research conducted in the UK dominates this topic area (see Bargiela et al., 2016; Hickey et al., 2018; Raymond-Barker et al., 2018)”

    From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Hickey et al., 2018

  • Adults described interactions with other autistic adults as validating and fulfilling, where their differences were normalised.

    “In contrast, adults described interactions with other autistic adults as validating and fulfilling (Bargiela et al., 2016; Hickey et al., 2018; Tan, 2018), where their differences were normalised (Bargiela et al., 2016; Hickey et al., 2018; Tan, 2018).”

    From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Hickey et al., 2018

  • In many cases, improved self-understanding after diagnosis helped adults develop useful strategies in everyday life.

    “In many cases, improved selfunderstanding after diagnosis helped adults develop useful strategies in everyday life (Hickey et al., 2018; Kanfiszer et al., 2017; Lewis, 2016b; Tan, 2018).”

    From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Hickey et al., 2018

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Research works printed but not linked: 31

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Authors
Hickey, A., Crabtree, J., & Stott, J.
Affiliations
  • South London and Maudsley NHS Foundation Trust (GB)
  • London Borough of Tower Hamlets (GB)
  • University College London (GB)
Corresponding author
Stott, Joshua
ORCID
Venue
Autism
Publisher
SAGE Publications
Published
2017-02-13
Volume
22
Issue
3
Pages
357-367
ISSN
  • 1362-3613 (ISSN-L)
  • 1461-7005
DOI
10.1177/1362361316680914
OpenAlex
W2588184259
Cited by
131
References
15
Citations by year
2026: 20 · 2025: 21 · 2024: 26 · 2023: 14 · 2022: 17 · 2021: 9 · 2020: 8 · 2019: 9 · 2018: 4 · 2017: 3
FWCI
3.77
Type
journal article
Language
en
Open access
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • Autism (publishedVersion)
  • PubMed (publishedVersion)
  • UCL Discovery (University College London) (submittedVersion)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Health Sciences › Health Professions › General Health Professions › Aging, Elder Care, and Social Issues
Keywords
older adults, lived experience, diagnosis, social support, loneliness, isolation, sense of belonging, life review, difference, social connectedness
MeSH terms
Age Factors, Aged, Autistic Disorder, Female, Humans, Interviews as Topic, Male, Middle Aged, Personal Satisfaction, Social Support

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