Expanding quality of life assessment for autistic adults in mid- to late-life: Measure development and validation

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Viner, H., Sischka, P., Radford, H., & Kornadt, A. E. (2026). Expanding quality of life assessment for autistic adults in mid- to late-life: Measure development and validation. Research in Autism, 135, 202933. https://doi.org/10.1016/j.reia.2026.202933

Journal or book title
Research in Autism
Publisher
Elsevier BV
Volume
135
Pages
202933
Article number
202933
Publication date: 16 May 2026 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Hannah Viner
  2. Philipp Sischka
  3. Holly Radford *
  4. Anna E. Kornadt

Abstract

No structured abstract stored for this reference.

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: 2 Oct 2026 17:07.

Cited references
60
With a DOI
56
Without a DOI, from raw bibliography text
4
17 / 60 (28.3%) cited references include at least one author identified as autistic.
References with data to complete
1 / 60 (1.7%)
References with detected author names
59 / 60 (98.3%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
4
References with raw author names still to review
1
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
263
From DOI or external metadata
263
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
169 / 263 (64.3%) names are linked to an author already present in AutiHub. 94 / 263 (35.7%) names are not yet linked.
Names linked to a person identified as autistic
35 / 263 (13.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 35 / 169 (20.7%). Distinct people identified as autistic: 29 / 216 (13.4%).
  1. Johan Y. Y. Ng , Nikos Ntoumanis , Cecilie Thøgersen-Ntoumani , Edward L. Deci , Richard M. Ryan , Joan L. Duda et al. (2012). Self-Determination Theory Applied to Health Contexts . Perspectives on Psychological Science, 7(4), 325-340. SAGE Publications.
    Type: Article DOI: 10.1177/1745691612447309 OpenAlex: https://openalex.org/W1992207741
    Crossref OpenAlex
  2. Helen E. Andrews , Darren Hedley , Simon Bury (2024). The Relationship Between Autistic Traits and Quality of Life: Investigation of Indirect Effects Through Self-Determination . Autism in Adulthood, 6(2), 177-191. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0117 OpenAlex: https://openalex.org/W4385546464
    Crossref OpenAlex
  3. Sheldon Cohen , Tom Kamarck , Robin Mermelstein (1983). A Global Measure of Perceived Stress . Journal of Health and Social Behavior, 24(4), 385. SAGE Publications.
    Type: Article DOI: 10.2307/2136404 OpenAlex: https://openalex.org/W1996299251
    Crossref OpenAlex
  5. Robert L. Spitzer , Kurt Kroenke , Janet B. W. Williams , Bernd Löwe (2006). A Brief Measure for Assessing Generalized Anxiety Disorder . Archives of Internal Medicine, 166(10), 1092. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archinte.166.10.1092 OpenAlex: https://openalex.org/W2043705607
    Crossref OpenAlex
  7. The WHOQOL-Dis Group , M. J. Power , A. M. Green (2010). Development of the WHOQOL disabilities module . Quality of Life Research, 19(4), 571-584. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11136-010-9616-6 OpenAlex: https://openalex.org/W2064643935
    Crossref OpenAlex
  9. John L. Horn (1965). A Rationale and Test for the Number of Factors in Factor Analysis . Psychometrika, 30(2), 179. Cambridge University Press (CUP).
    Type: Article DOI: 10.1007/bf02289447 OpenAlex: https://openalex.org/W2088477804
    Crossref OpenAlex
  10. Marije Blok , Frans W Jacobs , Arjan C Videler , Hilde M. Geurts , Jan Pieter Teunisse (2025). From diagnosis to dialogue: a call for support of older adults with a late autism diagnosis . The Gerontologist, 65(10). Oxford University Press (OUP).
    Type: Article DOI: 10.1093/geront/gnaf181 OpenAlex: https://openalex.org/W4414365787
    Crossref OpenAlex
  11. Stef van Buuren (2010). Item Imputation Without Specifying Scale Structure . Methodology, 6(1), 31-36. Hogrefe Publishing Group.
    Type: Article DOI: 10.1027/1614-2241/a000004 OpenAlex: https://openalex.org/W2103827301
    Crossref OpenAlex
  12. Rebecca A. Charlton , Goldie A. McQuaid , Gregory L. Wallace (2023). Social support and links to quality of life among middle-aged and older autistic adults . Autism, 27(1), 92-104. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221081917 OpenAlex: https://openalex.org/W4220740604
    Crossref OpenAlex
  13. Jonna M Eriksson , Lisa MJ Andersen , Susanne Bejerot (2013). RAADS-14 Screen: validity of a screening tool for autism spectrum disorder in an adult psychiatric population . Molecular Autism, 4(1), 49. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/2040-2392-4-49 OpenAlex: https://openalex.org/W2106068095
    Crossref OpenAlex
  14. Mary Elizabeth Hughes , Linda J. Waite , Louise C. Hawkley , John T. Cacioppo (2004). A Short Scale for Measuring Loneliness in Large Surveys . Research on Aging, 26(6), 655-672. SAGE Publications.
    Type: Article DOI: 10.1177/0164027504268574 OpenAlex: https://openalex.org/W2117152544
    Crossref OpenAlex
  15. Cohen (1988). Perceived stress in a probability sample of the United States .
    Type: Other
    Crossref
  16. Kim F. Nimon , Frederick L. Oswald (2013). Understanding the Results of Multiple Linear Regression . Organizational Research Methods, 16(4), 650-674. SAGE Publications.
    Type: Article DOI: 10.1177/1094428113493929 OpenAlex: https://openalex.org/W2122822577
    Crossref OpenAlex
  17. Deci (1985). Conceptualizations of intrinsic motivation and self-determination .
    Type: Other
    Crossref
  18. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2001). The PHQ-9 . Journal of General Internal Medicine, 16(9), 606-613. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1046/j.1525-1497.2001.016009606.x OpenAlex: https://openalex.org/W2132322340
    Crossref OpenAlex
  19. The Whoqol Group (1998). The World Health Organization quality of life assessment (WHOQOL): Development and general psychometric properties . Social Science & Medicine, 46(12), 1569-1585. Elsevier BV.
    Type: Article DOI: 10.1016/s0277-9536(98)00009-4 OpenAlex: https://openalex.org/W2153037374
    Crossref OpenAlex
  20. Dayna Francis , David Hershman , Rebecca A. Charlton , Francesca Happé , Gavin Robert Stewart (2025). “Bigger lows, but higher highs”: A qualitative exploration of the similarities and differences in quality of life of middle-aged and older autistic and non-autistic adults . Research in Autism, 123, 202533. Elsevier BV.
    Type: Article DOI: 10.1016/j.reia.2025.202533 OpenAlex: https://openalex.org/W4408164151
    Crossref OpenAlex
  21. Eva Gerino , Luca Rollè , Cristina Sechi , Piera Brustia (2017). Loneliness, Resilience, Mental Health, and Quality of Life in Old Age: A Structural Equation Model . Frontiers in Psychology, 8, 2003-2003. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2017.02003 OpenAlex: https://openalex.org/W2770019040
    Crossref OpenAlex
  22. Aoife Hickey , Jason Crabtree , Joshua Stott (2018). ‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism . Autism, 22(3), 357-367. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316680914 OpenAlex: https://openalex.org/W2588184259
    Crossref OpenAlex
  23. Francesca Happé , Uta Frith (2020). Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research . Journal of Child Psychology and Psychiatry, 61(3), 218-232. Wiley.
    Type: Article DOI: 10.1111/jcpp.13176 OpenAlex: https://openalex.org/W3003423347
    Crossref OpenAlex
  24. Rachel Loomes , Laura Hull , Will Mandy (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis . Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2017.03.013 OpenAlex: https://openalex.org/W2604697269
    Crossref OpenAlex
  26. N. Leigh-Hunt , D. Bagguley , K. Bash , V. Turner , S. Turnbull , N. Valtorta et al. (2017). An overview of systematic reviews on the public health consequences of social isolation and loneliness . Public Health, 152, 157-171. Elsevier BV.
    Type: Article DOI: 10.1016/j.puhe.2017.07.035 OpenAlex: https://openalex.org/W2755781951
    Crossref OpenAlex
  27. Elizabeth Hitches , Dean Dudley , Melissa Johnstone , Stuart Woodcock (2025). Bots and baddies: supporting the integrity of online survey research in the face of a growing challenge . Quality & Quantity, 59(2), 1481-1506. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11135-024-02001-w OpenAlex: https://openalex.org/W4405275368
    Crossref OpenAlex
  29. Ling-Yi Lin , Pai-Chuan Huang (2019). Quality of life and its related factors for adults with autism spectrum disorder . Disability and Rehabilitation, 41(8), 896-903. Informa UK Limited.
    Type: Article DOI: 10.1080/09638288.2017.1414887 OpenAlex: https://openalex.org/W2772050964
    Crossref OpenAlex
  30. Laura Hull , Lily Levy , Meng-Chuan Lai , K.V. Petrides , Simon Baron-Cohen , Carrie T. Allison et al. (2021). Is social camouflaging associated with anxiety and depression in autistic adults? Molecular Autism, 12(1), 13. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-021-00421-1 OpenAlex: https://openalex.org/W3132619758
    Crossref OpenAlex
  31. Leonard J. Paas , Meike Morren (2018). PLease do not answer if you are reading this: respondent attention in online panels . Marketing Letters, 29(1), 13-21. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11002-018-9448-7 OpenAlex: https://openalex.org/W2789388691
    Crossref OpenAlex
  32. Rebecca Hymas , Johanna C. Badcock , Elizabeth Milne (2024). Loneliness in Autism and Its Association with Anxiety and Depression: A Systematic Review with Meta-Analyses . Review Journal of Autism and Developmental Disorders, 11(1), 121-156. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-022-00330-w OpenAlex: https://openalex.org/W4285588766
    Crossref OpenAlex
  33. Dirk Lubbe (2019). Parallel analysis with categorical variables: Impact of category probability proportions on dimensionality assessment accuracy. Psychological Methods, 24(3), 339-351. American Psychological Association (APA).
    Type: Article DOI: 10.1037/met0000171 OpenAlex: https://openalex.org/W2802002321
    Crossref OpenAlex
  34. Keeley White , Tara D. Flanagan , Aparna Nadig (2018). Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder . Journal of Developmental and Physical Disabilities, 30(6), 735-754. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10882-018-9616-y OpenAlex: https://openalex.org/W2884091629
    Crossref OpenAlex
  35. Meng-Chuan Lai , Caroline Kassee , Richard Besney , Sarah Bonato , Laura Hull , Will Mandy et al. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis . Lancet Psychiatry, 6(10), 819. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(19)30289-5 OpenAlex: https://openalex.org/W2936336589
    Crossref OpenAlex
  39. Bethany Oakley , Julian Tillmann , Jumana Ahmad , Daisy Crawley , Antonia San José Cáceres , R. J. Holt et al. (2021). How do core autism traits and associated symptoms relate to quality of life? Findings from the Longitudinal European Autism Project . Autism, 25(2), 389-404. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320959959 OpenAlex: https://openalex.org/W3092212229
    Crossref OpenAlex
  40. Michael D. Wolcott , Nikki G. Lobczowski (2021). Using cognitive interviews and think-aloud protocols to understand thought processes . Currents in Pharmacy Teaching and Learning, 13(2), 181-188. Elsevier BV.
    Type: Article DOI: 10.1016/j.cptl.2020.09.005 OpenAlex: https://openalex.org/W3093052501
    Crossref OpenAlex
  43. Gema P. Sáez-Suanes , María Álvarez-Couto (2022). Factors Associated with Quality of Life in Adults with Autism Spectrum Disorder: A Systematic Review . Review Journal of Autism and Developmental Disorders, 9(3), 307-319. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-021-00254-x OpenAlex: https://openalex.org/W3155367870
    Crossref OpenAlex
  44. Goldie A. McQuaid , Colin H. Weiss , Alex Job Said , Kevin A. Pelphrey , Nancy Raitano Lee , Gregory L. Wallace (2022). Increased perceived stress is negatively associated with activities of daily living and subjective quality of life in younger, middle, and older autistic adults . Autism Research, 15(8), 1535-1549. Wiley.
    Type: Article DOI: 10.1002/aur.2779 OpenAlex: https://openalex.org/W4283822824
    Crossref OpenAlex
  46. Grace Trundle , Katy A. Jones , Danielle Ropar , Vincent Egan (2023). Prevalence of Victimisation in Autistic Individuals: A Systematic Review and Meta-Analysis . Trauma, Violence, & Abuse, 24(4), 2282-2296. SAGE Publications.
    Type: Article DOI: 10.1177/15248380221093689 OpenAlex: https://openalex.org/W4229017466
    Crossref OpenAlex
  47. Richard M. Ryan , Edward L. Deci (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 55(1), 68-78. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0003-066x.55.1.68 OpenAlex: https://openalex.org/W4242883546
    Crossref OpenAlex
  48. O’Nions (2023). Autism in England: Investigating underdiagnosis in a population-based cohort . The Lancet Regional Health Europe, 29.
    Type: Other
    Crossref
  49. Elizabeth Weir , Carrie T. Allison , Simon Baron-Cohen (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data . Molecular Autism, 13(1), 23. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-022-00501-w OpenAlex: https://openalex.org/W4281568468
    Crossref OpenAlex
  54. R Core Team. (2025). R: A language and environment for statistical computing (Version 4. 5. 1) [Computer software]. R Foundation for Statistical Computing. 〈 https://www.r-project.org/〉 .
    Type: Other
    Crossref
  55. Alexandra Sturm , Sijia Huang , Vanessa Bal , Ben Schwartzman (2024). Psychometric exploration of the RAADS-R with autistic adults: Implications for research and clinical practice . Autism, 28(9), 2334. SAGE Publications.
    Type: Article DOI: 10.1177/13623613241228329 OpenAlex: https://openalex.org/W4391485102
    Crossref OpenAlex
  57. Philipp Sischka , Lena Grübbel , Christina V. Reisinger , Kristina M. Neufang , Alexander F. Schmidt (2024). On the dimensionality, suitability of sum/mean scores, and cross-country measurement invariance of the Perceived Stress Scale 10 (PSS-10)—Evidence from 41 countries. International Journal of Stress Management, 31(4), 375-391. American Psychological Association (APA).
    Type: Article DOI: 10.1037/str0000330 OpenAlex: https://openalex.org/W4400982371
    Crossref OpenAlex
  58. Gavin Robert Stewart , Emily Luedecke , Will Mandy , Rebecca A. Charlton , Francesca Happé (2024). Experiences of social isolation and loneliness in middle-aged and older autistic adults . Neurodiversity, 2, 1. SAGE Publications.
    Type: Article DOI: 10.1177/27546330241245529 OpenAlex: https://openalex.org/W4394881713
    Crossref OpenAlex
  59. Gavin Robert Stewart , Francesca Happé (2025). Aging Across the Autism Spectrum . Annual Review of Developmental Psychology, 7(1), 461-484. Annual Reviews.
    Type: Article DOI: 10.1146/annurev-devpsych-111323-090813 OpenAlex: https://openalex.org/W4413822307
    Crossref OpenAlex