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

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

Publication date: 16 May 2026 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English

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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)

Abstract

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
60
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 60 (13.3%)
Cited author occurrences identified as autistic
18 / 263 (6.8%)
Among occurrences linked to AutiHub author records: 18 / 143 (12.6%). Distinct cited authors identified as autistic: 17 / 218 (7.8%).
Cited author occurrences linked to AutiHub author records
143 / 263 (54.4%)
Distinct linked cited authors: 103 / 218 (47.2%)
Linked cited-author occurrences not identified as autistic
125 / 143 (87.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 125 / 263 (47.5%). Distinct linked cited authors not identified as autistic: 86 / 103 (83.5%).
  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.
    Crossref OpenAlex
  2. Helen E. Andrews , Darren Hedley , Simon M. 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.
    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
  4. Michael Ayres , Jeremy R. Parr , Jacqui Rodgers , David Mason , Leah Avery , Darren Flynn (2018). A systematic review of quality of life of adults on the autism spectrum . Autism, 22(7), 774-783. SAGE Publications.
    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).
    Crossref OpenAlex
  6. 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.
    Crossref OpenAlex
  7. John L. Horn (1965). A Rationale and Test for the Number of Factors in Factor Analysis . Psychometrika, 30(2), 179-185. Cambridge University Press (CUP).
    Crossref OpenAlex
  8. 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).
    Crossref OpenAlex
  9. Stef van Buuren (2010). Item Imputation Without Specifying Scale Structure . Methodology, 6(1), 31-36. Hogrefe Publishing Group.
    Crossref OpenAlex
  10. 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.
    Crossref OpenAlex
  11. 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.
    Crossref OpenAlex
  12. 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.
    Crossref OpenAlex
  13. Cohen (1988). Perceived stress in a probability sample of the United States .
    Type: Other
    Crossref
  14. Kim F. Nimon , Frederick L. Oswald (2013). Understanding the Results of Multiple Linear Regression . Organizational Research Methods, 16(4), 650-674. SAGE Publications.
    Crossref OpenAlex
  15. Deci (1985). Conceptualizations of intrinsic motivation and self-determination .
    Type: Other
    Crossref
  16. 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.
    Crossref OpenAlex
  17. 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.
    Crossref OpenAlex
  18. Dayna Francis , David Hershman , Rebecca A. Charlton , Francesca Happé , Gavin R. 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.
    Crossref OpenAlex
  19. 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.
    Crossref OpenAlex
  20. 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.
    Crossref OpenAlex
  21. 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.
    Crossref OpenAlex
  22. 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.
    Crossref OpenAlex
  23. 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.
    Crossref OpenAlex
  24. 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.
    Crossref OpenAlex
  25. Helen McConachie , David Mason , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People . Journal of Autism and Developmental Disorders, 48(5), 1596-1611. Springer Science and Business Media LLC.
    Crossref OpenAlex
  26. 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.
    Crossref OpenAlex
  27. Laura Hull , Lily Levy , Meng-Chuan Lai , K. V. Petrides , Simon Baron-Cohen , Carrie Allison et al. (2021). Is social camouflaging associated with anxiety and depression in autistic adults? Molecular Autism, 12(1), 13-13. Springer Science and Business Media LLC.
    Crossref OpenAlex
  28. 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.
    Crossref OpenAlex
  29. 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.
    Crossref OpenAlex
  30. 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).
    Crossref OpenAlex
  31. 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.
    Crossref OpenAlex
  32. 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 . The Lancet Psychiatry, 6(10), 819-829. Elsevier BV.
    Crossref OpenAlex
  33. David Mason , J. Mackintosh , H. McConachie , Jacqui Rodgers , Tracy Finch , Jeremy R. Parr (2019). Quality of life for older autistic people: The impact of mental health difficulties . Research in Autism Spectrum Disorders, 63, 13-22. Elsevier BV.
    Crossref OpenAlex
  34. Helen McConachie , Colin Wilson , David Mason , Deborah Garland , Jeremy R. Parr , Alexia Rattazzi et al. (2020). What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries . Autism in Adulthood, 2(1), 4-12. SAGE Publications.
    Crossref OpenAlex
  35. Yeju Lin , David Mason , Colette Hirsch , Francesca Happé (2025). Intolerance of Uncertainty and Anxiety (but not Alexithymia) Mediate the Association Between Autistic Traits and Quality of Life . Journal of Autism and Developmental Disorders, 55(4), 1389-1401. Springer Science and Business Media LLC.
    Crossref OpenAlex
  36. Bethany F. Oakley , Julian Tillmann , Jumana Ahmad , Daisy Crawley , Antonia San José Cáceres , Rosemary 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.
    Crossref OpenAlex
  37. 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.
    Crossref OpenAlex
  38. David Mason , Gavin R. Stewart , Simone Josephine Capp , Francesca Happé (2022). Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go . Autism in Adulthood, 4(2), 164-172. SAGE Publications.
    Crossref OpenAlex
  39. 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.
    Crossref OpenAlex
  40. 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
  41. Heidi Merrington , Vicki Gibbs , Kaaren Haas , Trevor Clark , Ainslie Robinson , Mustafa Al Ansari et al. (2025). What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults . Autism in Adulthood, 7(3), 312-323. SAGE Publications.
    Crossref OpenAlex
  42. 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.
    Crossref OpenAlex
  43. 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).
    Crossref OpenAlex
  44. O’Nions (2023). Autism in England: Investigating underdiagnosis in a population-based cohort . The Lancet Regional Health Europe, 29.
    Type: Other
    Crossref
  45. Elizabeth M Weir , Carrie Allison , Simon Baron-Cohen (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data . Molecular Autism, 13(1), 23-23. Springer Science and Business Media LLC.
    Crossref OpenAlex
  46. Elisabeth Øverland , Åshild Lappegard Hauge , Stian Orm , Merete Glenne Øie , Erik Winther Skogli , Elizabeth Pellicano et al. (2024). “I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life . Autism, 28(6), 1369-1381. SAGE Publications.
    Crossref OpenAlex
  47. Eya‐Mist Rødgaard , Kristian Jensen , Kamilla Woznica Miskowiak , Laurent Mottron (2022). Representativeness of autistic samples in studies recruiting through social media . Autism Research, 15(8), 1447-1456. Wiley.
    Type: Article DOI: 10.1002/aur.2777 OpenAlex: https://openalex.org/W4284991023
    Crossref OpenAlex
  48. 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
  49. 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), 2334-2345. SAGE Publications.
    Crossref OpenAlex
  50. 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).
    Crossref OpenAlex
  51. Gavin R. 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.
    Crossref OpenAlex
  52. Gavin R. Stewart , Francesca Happé (2025). Aging Across the Autism Spectrum . Annual Review of Developmental Psychology, 7(1), 461-484. Annual Reviews.
    Crossref OpenAlex