Re-examining the association between the age of learning one is autistic and adult outcomes
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 markerLeung, F. Y., Shah, P., Mason, D., & Livingston, L. A. (2023). Re-examining the association between the age of learning one is autistic and adult outcomes. Autism, 28(2), 433-448. https://doi.org/10.1177/13623613231173056
This publication is integrated into AutiHub through:
Authors
Abstract
It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults (N = 300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic. Lay abstract An interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether ‘learning one is autistic’ referred to learning about one’s diagnosis or receiving one’s diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support.
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 11:55.
- With a DOI
- 63
- Without a DOI, from raw bibliography text
- 2
- References with detected author names
- 63 / 65 (96.9%)
- Without detected author names
- 2
- Without a structured title
- 2
- Without a stable identifier
- 2
- References with raw author names still to review
- 2
- References with external metadata lookup issues
- 0
- From DOI or external metadata
- 295
- From validated raw bibliography text
- 0
- Raw names already validated
- 0
- Raw names still to review
- 2
-
Heidi Sivertsen , Guro Hanevold Bjørkløf , Knut Engedal , Geir Selbæk , Anne-Sofie Helvik (2015). Depression and Quality of Life in Older Persons: A Review . Dementia and Geriatric Cognitive Disorders, 40(5-6), 311-339. S. Karger AG.OpenAlex
-
Amy Accardo , S. Jay Kuder , John Woodruff (2019). Accommodations and support services preferred by college students with autism spectrum disorder . Autism, 23(3), 574-583. SAGE Publications.Crossref OpenAlex OpenCitations
-
Nicholas Gelbar , Isaac C. Smith , Brian Reichow (2014). Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs . Journal of Autism and Developmental Disorders, 44(10), 2593-2601. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Katrina Lloyd , Paula Devine (2012). Psychometric properties of the Warwick–Edinburgh Mental Well-being Scale (WEMWBS) in Northern Ireland . Journal of Mental Health, 21(3), 257-263. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Samuel R. C. Arnold , Yunhe Huang , Ye In (Jane) Hwang , Amanda Richdale , Julian Trollor , Lauren P Lawson (2020). “The Single Most Important Thing That Has Happened to Me in My Life”: Development of the Impact of Diagnosis Scale—Preliminary Revision . Autism in Adulthood, 2(1), 34-41. SAGE Publications.Crossref OpenAlex OpenCitations
-
Corentin J. Gosling , Ariane Cartigny , Baptiste C. Mellier , Aleix Solanes , Joaquim Radua , Richard Delorme (2022). Efficacy of psychosocial interventions for Autism spectrum disorder: an umbrella review . Molecular Psychiatry, 27(9), 3647-3656. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Sander Begeer , DAVID S. MANDELL , Bernadette Wijnker-Holmes , Stance Venderbosch , Dorien Rem , Fred Stekelenburg et al. (2013). Sex Differences in the Timing of Identification Among Children and Adults with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 43(5), 1151-1156. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Samuel R. C. Arnold , Mirko Uljarevic , Ye In (Jane) Hwang , Amanda Richdale , Julian Trollor , Lauren P Lawson (2020). Brief Report: Psychometric Properties of the Patient Health Questionaire-9 (PHQ-9) in Autistic Adults . Journal of Autism and Developmental Disorders, 50(6), 2217-2225. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
John F. Strang , Anna I.R. van der Miesen , Reid Caplan *Autistic author. Learn more… , Cat Hughes *Autistic author. Learn more… , Sharon daVanport *Autistic author. Learn more… , Meng-Chuan Lai (2020). Both sex- and gender-related factors should be considered in autism research and clinical practice . Autism, 24(3), 539-543. SAGE Publications.
-
Brígida Patrício , Luis M. T. Jesus , Madeline Cruice , Andreia Hall (2014). Quality of Life Predictors and Normative Data . Social Indicators Research, 119(3), 1557-1570. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Gray Atherton , Emma Edisbury , Andrea Piovesan , Liam Cross (2022). Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life . Journal of Autism and Developmental Disorders, 52(8), 3639-3654. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Janet K. Spittlehouse , Esther Vierck , John F. Pearson , Peter R. Joyce (2014). Temperament and character as determinants of well-being . Comprehensive Psychiatry, 55(7), 1679-1687. Elsevier BV.Crossref OpenAlex OpenCitations
-
Susan E. Levy , Ellen Giarelli , Li‐Ching Lee , Laura A. Schieve , Russell S. Kirby , Christopher Cunniff et al. (2010). Autism Spectrum Disorder and Co-occurring Developmental, Psychiatric, and Medical Conditions Among Children in Multiple Populations of the United States . Journal of Developmental & Behavioral Pediatrics, 31(4), 267-275. Ovid Technologies (Wolters Kluwer Health).Crossref OpenAlex OpenCitations
-
Michael Ayres , Jeremy R. Parr , Jacqui Rodgers , David Mason *Autistic author. Learn more… , Leah Avery , Darren Flynn (2018). A systematic review of quality of life of adults on the autism spectrum . Autism, 22(7), 774. SAGE Publications.
-
George R. Franke (2010). Multicollinearity . Wiley International Encyclopedia of Marketing. Wiley.Crossref OpenAlex OpenCitations
-
Linda Ng Fat , Shaun Scholes , Sadie Boniface , Jennifer Mindell , Sarah Stewart-Brown (2017). Evaluating and establishing national norms for mental wellbeing using the short Warwick–Edinburgh Mental Well-being Scale (SWEMWBS): findings from the Health Survey for England . Quality of Life Research, 26(5), 1129-1144. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
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 OpenCitations
-
Teal W. Benevides , Stephen Mark Shore *Autistic author. Learn more… , Kate Palmer , Patricia Duncan , Alex Plank *Autistic author. Learn more… , May-Lynn Andresen et al. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project . Autism, 24(4), 822-833. SAGE Publications.AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
-
Katherine S. Button , John P. A. Ioannidis , Claire Mokrysz , Brian A. Nosek , Jonathan Flint , Emma S. J. Robinson et al. (2013). Power failure: Why Small Sample Size Undermines the Reliability of Neuroscience . Nature Reviews Neuroscience, 14(5), 365. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Samuel Tromans , Verity Chester , Eli Gemegah , Kristian Roberts , Zoe Morgan , Guiqing Lily Yao et al. (2021). Autism identification across ethnic groups: a narrative review . Advances in Autism, 7(3), 241-255. Emerald.Crossref OpenAlex OpenCitations
-
Jaci C. Huws , Robert S. P. Jones (2008). Diagnosis, disclosure, and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism . J Intellect Disabil Res, 33(2), 99. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Louise Camm-Crosbie , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality . Autism, 23(6), 1431-1441. SAGE Publications.Crossref OpenAlex OpenCitations
-
Alexandra Leedham , Andrew R. Thompson , Richard Smith , Megan Freeth (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood . Autism, 24(1), 135. SAGE Publications.Crossref OpenAlex OpenCitations
-
Yoko Kamio , Naoko Inada , Tomonori Koyama (2013). A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders . Autism, 17(1), 15-26. SAGE Publications.Crossref OpenAlex OpenCitations
-
Vicky Caron , Nuria Jeanneret , Mathieu Giroux *Autistic author. Learn more… , Lucila Guerrero *Autistic author. Learn more… , Mélanie Ouimet , Baudouin Forgeot d’Arc et al. (2022). Sociocultural context and autistics’ quality of life: A comparison between Québec and France . Autism, 26(4), 900-913. SAGE Publications.
-
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 OpenCitations
-
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.Crossref OpenAlex OpenCitations
-
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 OpenCitations
-
Kate Cooper , Will Mandy , Catherine Butler , Ailsa Russell (2022). The lived experience of gender dysphoria in autistic adults: An interpretative phenomenological analysis . Autism, 26(4), 963-974. SAGE Publications.Crossref OpenAlex OpenCitations
-
Ruth Tennant , Louise Hiller , Ruth Fishwick , Stephen Platt , Stephen Joseph , Scott Weich et al. (2007). The Warwick-Edinburgh Mental Well-being Scale (WEMWBS): development and UK validation . Health and Quality of Life Outcomes, 5(1), 63. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
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.Crossref OpenAlex OpenCitations
-
Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.Crossref OpenAlex OpenCitations
-
Ling-Yi Lin (2014). Quality of Life of Taiwanese Adults with Autism Spectrum Disorder . PLoS ONE, 9(10), e109567. Public Library of Science (PLoS).Crossref OpenAlex OpenCitations
-
Robert Nash Parker , Rudy Fenwick (1983). The Pareto Curve and Its Utility for Open-Ended Income Distributions in Survey Research . Social Forces, 61(3), 872. Oxford University Press (OUP).Crossref OpenAlex OpenCitations
-
Suzanne Skevington , Farah M. McCrate (2012). Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHOQOL‐BREF . Health Expectations, 15(1), 49-62. Wiley.Crossref OpenAlex OpenCitations
-
Anita Thapar , Lucy A Livingston , Olga Eyre , Lucy Riglin (2023). Practitioner Review: Attention‐deficit hyperactivity disorder and autism spectrum disorder – the importance of depression . Journal of Child Psychology and Psychiatry, 64(1), 4-15. Wiley.Crossref OpenAlex OpenCitations
-
THE WHOQOL GROUP (1998). Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment . Psychological Medicine, 28(3), 551-558. Cambridge University Press (CUP).Crossref OpenAlex OpenCitations
-
Gerald J. Haeffel , Willie R. Cobb (2022). Tests of generalizability can diversify psychology and improve theories . Nature Reviews Psychology, 1(4), 186-187. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
William J. Skylark , Simon Baron-Cohen (2017). Initial evidence that non-clinical autistic traits are associated with lower income . Molecular Autism, 8(1), 61-61. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
R Core Team (2026). R: A Language and Environment for Statistical Computing . R Foundation for Statistical Computing.OpenAlex
-
Hannah Hobson , Daniel Poole , Amy Pearson *Autistic author. Learn more… , Sue Fletcher-Watson (2022). Opening up autism research: Bringing open research methods to our field . Autism, 26(5), 1011-1013. SAGE Publications.AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
-
Amanda Roestorf , Patricia Howlin , Dermot Bowler (2022). Ageing and autism: A longitudinal follow-up study of mental health and quality of life in autistic adults . Frontiers in Psychology, 13, 741213-741213. Frontiers Media SA.Crossref OpenAlex OpenCitations
-
Helen McConachie , David Mason *Autistic author. Learn more… , 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. Springer Science and Business Media LLC.
-
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 OpenCitations
-
Lauren P Lawson , Amanda Richdale , Alexandra Haschek , Rebecca L. Flower , Josh Vartuli , Samuel R. C. Arnold et al. (2020). Cross-sectional and longitudinal predictors of quality of life in autistic individuals from adolescence to adulthood: The role of mental health and sleep quality . Autism, 24(4), 954-967. SAGE Publications.Crossref OpenAlex OpenCitations
-
Isaac C. Smith , Jeffrey Edelstein , Bradley E. Cox *Autistic author. Learn more… , Susan W White (2018). Parental Disclosure of ASD Diagnosis to the Child: A Systematic Review . Evidence-Based Practice in Child and Adolescent Mental Health, 3(2), 98-105. Informa UK Limited.
-
Geraldine Leader , Amy Barrett , Chiara Ferrari , Mia Casburn , Leanne Maher , Katie Naughton et al. (2021). Quality of life, gastrointestinal symptoms, sleep problems, social support, and social functioning in adults with autism spectrum disorder . Research in Developmental Disabilities, 112, 103915. Elsevier BV.Crossref OpenAlex OpenCitations
-
J. Wolstencroft , L. Robinson , R. Srinivasan , E. Kerry , Will Mandy , D. Skuse (2018). A Systematic Review of Group Social Skills Interventions, and Meta-analysis of Outcomes, for Children with High Functioning ASD . Journal of Autism and Developmental Disorders, 48(7), 2293-2307. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Barry Wright , Penny Spikins , Hannah Pearson (2020). Should Autism Spectrum Conditions Be Characterised in a More Positive Way in Our Modern World? Medicina, 56(5), 233. MDPI AG.Crossref OpenAlex OpenCitations
-
David Mason *Autistic author. Learn more… , Helen McConachie , Deborah Garland , Alex Petrou , Jacqui Rodgers , Jeremy R. Parr (2018). Predictors of quality of life for autistic adults . Autism Research, 11(8), 1138. Wiley.
-
Calvin Solomon (2020). Autism and Employment: Implications for Employers and Adults with ASD . Journal of Autism and Developmental Disorders, 50(11), 4209-4217. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Lucy A Livingston , Punit Shah , Francesca Happé (2019). Compensatory strategies below the behavioural surface in autism: a qualitative study . The Lancet Psychiatry, 6(9), 766-777. Elsevier BV.Crossref OpenAlex OpenCitations
-
David Mason *Autistic author. Learn more… , J. Mackintosh , Helen 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.
-
Lucy A Livingston , Lucy H. Waldren , Esther Walton , Punit Shah (2022). Emotion processing differences mediate the link between sex and autistic traits in young adulthood . JCPP Advances, 2(3), e12096-e12096. Wiley.Crossref OpenAlex OpenCitations
-
Tomisin Oredipe , Bella Kofner *Autistic author. Learn more… , Ariana Riccio , Eilidh Cage , Jonathan Vincent , Steven K. Kapp *Autistic author. Learn more… et al. (2023). Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students . Autism, 27(1), 200-212. SAGE Publications.
-
Emily C. Taylor , Lucy A Livingston , Mitchell J. Callan , Punit Shah (2019). Divergent contributions of autistic traits to social psychological knowledge . Proceedings of the National Academy of Sciences, 116(51), 25378-25379. National Academy of Sciences.Crossref OpenAlex OpenCitations
-
David Mason *Autistic author. Learn more… , Jacqui Rodgers , Deborah Garland , Colin Wilson , Jeremy R. Parr , Helen McConachie (2022). Measuring quality of life in autistic adults: The reliability and validity of the Brief Version of the World Health Organization Quality of Life scale . AMRC Open Research, 4(3), 3. F1000 Research Ltd.
-
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.Crossref OpenAlex OpenCitations
-
Ariana Riccio , Steven K. Kapp *Autistic author. Learn more… , Allison Jordan , Anna Marie Dorelien *Autistic author. Learn more… , Kristen Gillespie-Lynch (2021). How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism . Autism, 25(2), 374-388. SAGE Publications.
-
Zachary J. Williams *Autistic author. Learn more… , Carissa J. Cascio , Tiffany G. Woynaroski (2023). Measuring subjective quality of life in autistic adults with the PROMIS global–10: Psychometric study and development of an autism-specific scoring method . Autism, 27(1), 145-157. SAGE Publications.
-
R Core Team. (2022). R: A language and environment for statistical computing. R Foundation for Statistical Computing. https://www . R-project.org/Type: OtherCrossref
-
Emily C. Taylor , Lucy A Livingston , Mitchell J. Callan , Paul H.P. Hanel , Punit Shah (2021). Do autistic traits predict pro-environmental attitudes and behaviors, and climate change belief? Journal of Environmental Psychology, 76, 101648. Elsevier BV.Crossref OpenAlex OpenCitations
-
Zachary J. Williams *Autistic author. Learn more… , Katherine Gotham (2021). Assessing general and autism‐relevant quality of life in autistic adults: A psychometric investigation using item response theory . Autism Research, 14(8), 1633-1644. Wiley.
-
Willow J. Sainsbury , Kelly Carrasco , Andrew Whitehouse , Lauren McNeil , Hannah Waddington (2023). Age of Diagnosis for Co-occurring Autism and Attention Deficit Hyperactivity Disorder During Childhood and Adolescence: a Systematic Review . Review Journal of Autism and Developmental Disorders, 10(3), 563-575. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
UNESCO Institute for Statistics. (2012). International Standard Classification of Education: ISCED 2011 (Comparative Social Research, 30). https://uis.unesco.org/sites/default/files/documents/international-standard-classification-of-education-isced-2011-en.pdfType: OtherCrossref