Living with autism without knowing: receiving a diagnosis in later life

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Stagg, S. D. & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7(1), 348-361. https://doi.org/10.1080/21642850.2019.1684920

Publication date: 1 Jan 2019 Added to AutiHub: 8 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Steven D. Stagg
  2. Hannah Belcher *

Abstract

Increasingly adults over the age of 50 are receiving a diagnosis of autism spectrum condition. Growing up in a time when autism was poorly recognised, these adults have lived unknowingly with the condition and face readjustment. This paper reports the first study to investigate this population. Nine adults over the age of 50, who had recently been diagnosed with ASC, were interviewed, and thematic analysis was used to analyse the transcripts. Results showed that the participants had received treatment for anxiety and depression. They reported ASC behaviours in their childhood and growing up they felt isolated and alien. Receiving a diagnosis was seen as a positive step and allowed for a reconfiguration of self and an appreciation of individual needs. Given the positive aspects of receiving a late diagnosis, more work is needed to identify older adults with undiagnosed ASC.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 18:19.

Cited references
50
With a DOI
36
Without a DOI, from raw bibliography text
10
0 / 50 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
4 / 50 (8.0%)
References with detected author names
48 / 50 (96.0%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
8
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
136
From DOI or external metadata
136
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
23 / 136 (16.9%) names are linked to an author already present in AutiHub. 113 / 136 (83.1%) names are not yet linked.
Names linked to a person identified as autistic
0 / 136 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 23 (0.0%). Distinct people identified as autistic: 0 / 124 (0.0%).
  1. Patricia Howlin , Philippa Moss (2012). Adults with Autism Spectrum Disorders . The Canadian Journal of Psychiatry, 57(5), 275-283. SAGE Publications.
    Type: Article DOI: 10.1177/070674371205700502 OpenAlex: https://openalex.org/W14179519
    Crossref OpenAlex OpenCitations
  2. American Psychiatric Association (1980). Diagnostic and statistical manual of mental disorders . Diagnostic and statistical manual of mental disorders.
    Type: Other
    Crossref
  3. Michael Bury (1982). Chronic illness as biographical disruption . Sociology of Health & Illness, 4(2), 167-182. Wiley.
    Type: Article DOI: 10.1111/1467-9566.ep11339939 OpenAlex: https://openalex.org/W2171810782
    Crossref OpenAlex OpenCitations
  4. Harvey Molloy , Latika Vasil (2004). Asperger syndrome, adolescence and identity: Looking beyond the label . Asperger syndrome, adolescence and identity: Looking beyond the label.
    Type: Other OpenAlex: https://openalex.org/W596783119
    Crossref OpenAlex
  5. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  6. Hilde M. Geurts , Max Stek , Hannie Comijs (2016). Autism Characteristics in Older Adults with Depressive Disorders . The American Journal of Geriatric Psychiatry, 24(2), 161-169. Elsevier BV.
    Type: Article DOI: 10.1016/j.jagp.2015.08.003 OpenAlex: https://openalex.org/W1213633469
    Crossref OpenAlex OpenCitations
  7. Belcher R. (1994). CIT0004 Journal of Vocational Rehabilitation, 4, 29.
    Type: Other
    Crossref
  8. Lydia Jones , Lorna Goddard , Elisabeth L. Hill , Lucy A. Henry , Laura Crane (2014). Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom . Journal of Autism and Developmental Disorders, 44(12), 3033-3044. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2161-3 OpenAlex: https://openalex.org/W2032693111
    Crossref OpenAlex OpenCitations
  9. Wendy Hollway , Tony Jefferson (2008). The free association narrative interview method . In Open Research Online - ORO (The Open University).
    Type: Book chapter OpenAlex: https://openalex.org/W1507341746
    OpenAlex
  10. Scott Bellini (2004). Social Skill Deficits and Anxiety in High-Functioning Adolescents With Autism Spectrum Disorders . Focus on Autism and Other Developmental Disabilities, 19(2), 78-86. SAGE Publications.
    Type: Article DOI: 10.1177/10883576040190020201 OpenAlex: https://openalex.org/W2142042279
    Crossref OpenAlex OpenCitations
  11. Clare Connors , Kirsten Stalker (2007). Children’s experiences of disability: pointers to a social model of childhood disability . Disability & Society, 22(1), 19-33. Informa UK Limited.
    Type: Article DOI: 10.1080/09687590601056162 OpenAlex: https://openalex.org/W2075399813
    Crossref OpenAlex OpenCitations
  12. Max van Manen (1990). Researching Lived Experience: Human Science for an Action Sensitive Pedagogy .
    Type: Book OpenAlex: https://openalex.org/W1553183615
    Crossref OpenAlex
  13. Lauren Bishop‐Fitzpatrick , Arezoo Movaghar , Jan S. Greenberg , David Page , Leann DaWalt , Murray H. Brilliant et al. (2018). Using machine learning to identify patterns of lifetime health problems in decedents with autism spectrum disorder . Autism Research, 11(8), 1120-1128. Wiley.
    Type: Article DOI: 10.1002/aur.1960 OpenAlex: https://openalex.org/W2802829047
    Crossref OpenAlex OpenCitations
  14. C. Punshon , P. Skirrow , Glynis Murphy (2009). The `not guilty verdict' . Autism, 13(3), 265-283. SAGE Publications.
    Type: Article DOI: 10.1177/1362361309103795 OpenAlex: https://openalex.org/W2030351972
    Crossref OpenAlex OpenCitations
  15. Lori‐Ann R. Sacrey , Lonnie Zwaigenbaum , Susan Bryson , Jessica Brian , Isabel M. Smith , Wendy Roberts et al. (2015). Can Parents’ Concerns Predict Autism Spectrum Disorder? A Prospective Study of High-Risk Siblings From 6 to 36 Months of Age . Journal of the American Academy of Child & Adolescent Psychiatry, 54(6), 470-478. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2015.03.014 OpenAlex: https://openalex.org/W1968044148
    Crossref OpenAlex OpenCitations
  16. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  17. Robert S. P. Jones , Andrew Zahl , Jaci C. Huws (2001). First-hand Accounts of Emotional Experiences in Autism: A qualitative analysis . Disability & Society, 16(3), 393-401. Informa UK Limited.
    Type: Article DOI: 10.1080/09687590120045950 OpenAlex: https://openalex.org/W2041350868
    Crossref OpenAlex OpenCitations
  18. Traolach Brugha , Sally McManus , John Bankart , Fiona Scott , Susan Purdon , Jane Smith et al. (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England . Archives of General Psychiatry, 68(5), 459. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archgenpsychiatry.2011.38 OpenAlex: https://openalex.org/W2138372369
    Crossref OpenAlex OpenCitations
  19. D. García‐Villamisar , Claire Hughes (2007). Supported employment improves cognitive performance in adults with Autism . Journal of Intellectual Disability Research, 51(2), 142-150. Wiley.
    Type: Article DOI: 10.1111/j.1365-2788.2006.00854.x OpenAlex: https://openalex.org/W2135979225
    Crossref OpenAlex OpenCitations
  20. Hannah Frith , Kate Gleeson (2004). Clothing and Embodiment: Men Managing Body Image and Appearance. Psychology of Men & Masculinity, 5(1), 40-48. American Psychological Association (APA).
    Type: Article DOI: 10.1037/1524-9220.5.1.40 OpenAlex: https://openalex.org/W1975924558
    Crossref OpenAlex OpenCitations
  21. Karen Hurlbutt , Lynne Chalmers (2002). Adults With Autism Speak Out . Focus on Autism and Other Developmental Disabilities, 17(2), 103-111. SAGE Publications.
    Type: Article DOI: 10.1177/10883576020170020501 OpenAlex: https://openalex.org/W2130225517
    Crossref OpenAlex OpenCitations
  22. Selma Idring , Michael Lundberg , Harald Sturm , Christina Dalman , Clara Gumpert , Dheeraj Rai et al. (2015). Changes in Prevalence of Autism Spectrum Disorders in 2001–2011: Findings from the Stockholm Youth Cohort . Journal of Autism and Developmental Disorders, 45(6), 1766-1773. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2336-y OpenAlex: https://openalex.org/W1978140034
    Crossref OpenAlex OpenCitations
  23. Carol A. Morris (1985). Self-Concept as Altered by the Diagnosis of Cancer . Nursing Clinics of North America, 20(4), 611-630. Elsevier BV.
    Type: Article DOI: 10.1016/s0029-6465(22)01909-0 OpenAlex: https://openalex.org/W4294161605
    Crossref OpenAlex OpenCitations
  24. Laura Crane , Richard Batty , Hanna Adeyinka , Lorna Goddard , Lucy A. Henry , Elisabeth L. Hill (2018). Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals . Journal of Autism and Developmental Disorders, 48(11), 3761-3772. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3639-1 OpenAlex: https://openalex.org/W2808369589
    Crossref OpenAlex OpenCitations
  25. Torbjörn Falkmer , Katie Anderson , Marita Falkmer , Chiara Horlin (2013). Diagnostic procedures in autism spectrum disorders: a systematic literature review . European Child & Adolescent Psychiatry, 22(6), 329-340. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00787-013-0375-0 OpenAlex: https://openalex.org/W1987617697
    Crossref OpenAlex OpenCitations
  26. Laura Crane , James W Chester , Lorna Goddard , Lucy A Henry , Elisabeth L. Hill (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom . Autism, 20(2), 153-162. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315573636 OpenAlex: https://openalex.org/W2118478153
    Crossref OpenAlex OpenCitations
  27. Amanda D. Heidgerken , Gary Geffken , Avani Modi , Laura Frakey (2005). A Survey of Autism Knowledge in a Health Care Setting . Journal of Autism and Developmental Disorders, 35(3), 323-330. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-005-3298-x OpenAlex: https://openalex.org/W1996943555
    Crossref OpenAlex OpenCitations
  28. Department of Health (2010). Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England . Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England.
    Type: Other
    Crossref
  29. Department of Health (2015). Statutory guidance for local authorities and NHS organisations to support implementation of the Adult autism strategy . Statutory guidance for local authorities and NHS organisations to support implementation of the Adult autism strategy.
    Type: Other
    Crossref
  30. Elliot G. Mishler (1991). Research Interviewing . Harvard University Press.
    Type: Book DOI: 10.2307/j.ctv26070x9 OpenAlex: https://openalex.org/W4206709390
    Crossref OpenAlex OpenCitations
  31. ARNOLD M. COOPER , ROBERT MICHELS (1981). Diagnostic and Statistical Manual of Mental Disorders, 3rd ed . American Journal of Psychiatry, 138(1), 128-129. American Psychiatric Association Publishing.
    Type: Article DOI: 10.1176/ajp.138.1.128 OpenAlex: https://openalex.org/W2050006242
    OpenAlex
  32. Andrew J.B. Fugard , Henry W.W. Potts (2015). Supporting thinking on sample sizes for thematic analyses: a quantitative tool . International Journal of Social Research Methodology, 18(6), 669-684. Informa UK Limited.
    Type: Article DOI: 10.1080/13645579.2015.1005453 OpenAlex: https://openalex.org/W2051106489
    Crossref OpenAlex OpenCitations
  33. Alinda Gillott , P.J. Standen (2007). Levels of anxiety and sources of stress in adults with autism . Journal of Intellectual Disabilities, 11(4), 359-370. SAGE Publications.
    Type: Article DOI: 10.1177/1744629507083585 OpenAlex: https://openalex.org/W2107963389
    Crossref OpenAlex OpenCitations
  34. Shelley E. Taylor (1983). Adjustment to threatening events: A theory of cognitive adaptation. American Psychologist, 38(11), 1161-1173. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0003-066x.38.11.1161 OpenAlex: https://openalex.org/W1971749549
    Crossref OpenAlex OpenCitations
  35. Hilde M. Geurts , Marcel D. Jansen (2012). A retrospective chart study: The pathway to a diagnosis for adults referred for ASD assessment . Autism, 16(3), 299-305. SAGE Publications.
    Type: Article DOI: 10.1177/1362361311421775 OpenAlex: https://openalex.org/W2138674918
    Crossref OpenAlex OpenCitations
  36. Elizabeth Peel , Odette Parry , Margaret Douglas , Julia Lawton (2004). Diagnosis of type 2 diabetes: a qualitative analysis of patients’ emotional reactions and views about information provision . Patient Education and Counseling, 53(3), 269-275. Elsevier BV.
    Type: Article DOI: 10.1016/j.pec.2003.07.010 OpenAlex: https://openalex.org/W2104279835
    Crossref OpenAlex OpenCitations
  37. Claudia Alonso Soriano , Elisabeth L. Hill , Laura Crane (2015). Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD) . Research in Developmental Disabilities, 43-44, 11-20. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2015.06.001 OpenAlex: https://openalex.org/W2113411165
    Crossref OpenAlex OpenCitations
  38. Greg Guest , Arwen Bunce , Laura Johnson (2006). How Many Interviews Are Enough? Field Methods, 18(1), 59-82. SAGE Publications.
    Type: Article DOI: 10.1177/1525822x05279903 OpenAlex: https://openalex.org/W2129660502
    Crossref OpenAlex OpenCitations
  39. Hollway W. (2009). The SAGE Encyclopedia of qualitative research methods . Choice Reviews Online, 46(08), 296. American Library Association.
    Type: Article DOI: 10.5860/choice.46-4214 OpenAlex: https://openalex.org/W2491563334
    Crossref OpenAlex
  40. Robert J. Gregory (1994). Meaningful work: Questions for vocational rehabilitation and a call for action . Journal of Occupational Rehabilitation, 4(2), 107-112. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf02110049
    OpenCitations
  41. Huws J. C. (2011). CIT0028 British Journal of Learning Disabilities, 13(2), 1999.
    Type: Other
    Crossref
  42. Elliot G. Mishler (1986). Research Interviewing: Context and Narrative .
    Type: Other OpenAlex: https://openalex.org/W2171518496
    OpenAlex
  43. Khine G. (2003). Meeting the needs of families with disabled children: What works and what’s promising? Meeting the needs of families with disabled children: What works and what’s promising?.
    Type: Other
    Crossref
  44. C A Morris (1985). Self-concept as altered by the diagnosis of cancer. PubMed, 20(4), 611-30.
    Type: Article OpenAlex: https://openalex.org/W2413752227
    OpenAlex
  45. Clodagh Murphy , C. Ellie Wilson , Dene M. Robertson , Christine Ecker , Eileen M. Daly , Neil Hammond et al. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development . Neuropsychiatric Disease and Treatment, Volume 12, 1669-1686. Informa UK Limited.
    Type: Article DOI: 10.2147/ndt.s65455 OpenAlex: https://openalex.org/W2464444303
    Crossref OpenAlex OpenCitations
  46. (2010). Diagnostic and Statistical Manual of Mental Disorders . In Handbook of Disease Burdens and Quality of Life Measures (pp. 4189-4189). Springer New York.
    Type: Book chapter DOI: 10.1007/978-0-387-78665-0_5485 OpenAlex: https://openalex.org/W2502993979
    OpenAlex
  47. Marcia Jean Carter (2014). Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Therapeutic Recreation Journal, 48(3).
    Type: Article OpenAlex: https://openalex.org/W2906253013
    OpenAlex
  48. Sloper P. (2002). Meeting the needs of disabled children . Meeting the needs of disabled children.
    Type: Other
    Crossref
  49. (2010). British Journal of Learning Disabilities . British Journal of Learning Disabilities. Wiley.
    Type: Other DOI: 10.1111/(issn)1468-3156 OpenAlex: https://openalex.org/W4210719183
    OpenAlex
  50. UK Parliament (2009). The autism act . The autism act.
    Type: Other
    Crossref