Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students

Oredipe, T., Kofner, B., Riccio, A., Cage, E., Vincent, J., Kapp, S. K., Dwyer, P., & Gillespie-Lynch, K. (2022). 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. https://doi.org/10.1177/13623613221086700

Publication date: 11 Apr 2022 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
2 / 8 (25.0%)

Abstract

Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students ( n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood. Lay abstract People learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.

Bibliography cited by this reference

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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 11:30.

Cited references
74
Total cited references integrated for this publication.
Cited references with an identified autistic author
11 / 74 (14.9%)
Cited author occurrences identified as autistic
16 / 267 (6.0%)
Among occurrences linked to AutiHub author records: 16 / 110 (14.5%). Distinct cited authors identified as autistic: 11 / 237 (4.6%).
Cited author occurrences linked to AutiHub author records
110 / 267 (41.2%)
Distinct linked cited authors: 85 / 237 (35.9%)
Linked cited-author occurrences not identified as autistic
94 / 110 (85.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 94 / 267 (35.2%). Distinct linked cited authors not identified as autistic: 74 / 85 (87.1%).
  1. Nikki C Gratton , Jessica Myring , Prisca Middlemiss , Deborah Shears , Diana Wellesley , Sarah Wynn et al. (2016). Children with sex chromosome trisomies: parental disclosure of genetic status . European Journal of Human Genetics, 24(5), 638-644. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  2. Anastasia H. Anderson , Mark Carter , Jennifer Stephenson (2018). Perspectives of University Students with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 48(3), 651-665. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  3. Micah Mazurek , Alicia Brewer Curran , Courtney Burnette , Kristin Sohl (2019). ECHO Autism STAT: Accelerating Early Access to Autism Diagnosis . Journal of Autism and Developmental Disorders, 49(1), 127-137. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  4. David S. Mandell , Maytali M. Novak , Cynthia D. Zubritsky (2005). Factors Associated With Age of Diagnosis Among Children With Autism Spectrum Disorders . Pediatrics, 116(6), 1480-1486. American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  5. Samuel R. C. Arnold , Yunhe Huang , Ye In Hwang , Amanda L. Richdale , Julian N 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
  6. Shinichi Nakagawa (2004). A farewell to Bonferroni: the problems of low statistical power and publication bias . Behavioral Ecology, 15(6), 1044-1045. Oxford University Press (OUP).
    Crossref OpenAlex OpenCitations
  7. Jillian E. Austin , Ratka Galijot , W. Hobart Davies (2018). Evaluating Parental Autism Disclosure Strategies . Journal of Autism and Developmental Disorders, 48(1), 103-109. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  8. Laura Crane , Lydia Jones , Rachel Prosser , Morvarid Taghrizi , Elizabeth Pellicano (2019). Parents’ views and experiences of talking about autism with their children . Autism, 23(8), 1969-1981. SAGE Publications.
    Crossref OpenAlex OpenCitations
  9. Roisin Finnegan , Tim Trimble , Jonathan Egan (2014). Irish parents' lived experience of learning about and adapting to their child's autistic spectrum disorder diagnosis and their process of telling their child about their diagnosis . The Irish Journal of Psychology, 35(2-3), 78-90. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  10. A. Baghdadli , F. Russet , Laurent Mottron (2017). Measurement properties of screening and diagnostic tools for autism spectrum adults of mean normal intelligence: A systematic review . European Psychiatry, 44, 104-124. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  11. Yunhe Huang , Samuel R. C. Arnold , Kitty‐Rose Foley , Julian N Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Crossref OpenAlex OpenCitations
  12. Anna Dennis , Susan Howell , Lisa Cordeiro , Nicole Tartaglia (2015). “How Should I Tell my Child?” Disclosing the Diagnosis of Sex Chromosome Aneuploidies . Journal of Genetic Counseling, 24(1), 88-103. Wiley.
    Crossref OpenAlex OpenCitations
  13. Daniel J. Benjamin , James O. Berger (2019). Three Recommendations for Improving the Use of p -Values . The American Statistician, 73(sup1), 186-191. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  14. Nancy L. Kondracki , Nancy S. Wellman , Daniel R. Amundson (2002). Content Analysis: Review of Methods and Their Applications in Nutrition Education . Journal of Nutrition Education and Behavior, 34(4), 224-230. Elsevier BV.
    Crossref OpenAlex OpenCitations
  15. Steven D. Stagg , Hannah Belcher (2019). Living with autism without knowing: receiving a diagnosis in later life . Health Psychology and Behavioral Medicine, 7(1), 348-361. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  16. Lise Mogensen , Jan Mason (2015). The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder . Sociology of Health & Illness, 37(2), 255-269. Wiley.
    Crossref OpenAlex OpenCitations
  17. Tamara C. Daley , Thomas S. Weisner (2003). "I Speak a Different Dialect": Teen Explanatory Models of Difference and Disability . Medical Anthropology Quarterly, 17(1), 25-48. Wiley.
    Crossref OpenAlex OpenCitations
  18. Cadogan S. (2015). Parent reported impacts of their disclosure of their child’s ASD diagnosis to their children [Master’s thesis, Graduate Studies]. http://theses.ucalgary.ca/bitstream/11023/2298/4/ucalgary_2015_cadogan_sarah.pdf
    Type: Other
    Crossref
  19. Tiffany D. Johnson , Aparna Joshi (2016). Dark clouds or silver linings? A stigma threat perspective on the implications of an autism diagnosis for workplace well-being. Journal of Applied Psychology, 101(3), 430-449. American Psychological Association (APA).
    Crossref OpenAlex OpenCitations
  20. Agatha M. Gallo , Denise B. Angst , Kathleen A. Knafl (2009). Disclosure of Genetic Information Within Families . AJN, American Journal of Nursing, 109(4), 65-69. Ovid Technologies (Wolters Kluwer Health).
    Crossref OpenAlex OpenCitations
  21. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  22. Patricia O. Towle , Patricia A. Patrick , Tamique Ridgard , Sofia Pham , Jaime Marrus (2020). Is Earlier Better? The Relationship between Age When Starting Early Intervention and Outcomes for Children with Autism Spectrum Disorder: A Selective Review . Autism Research and Treatment, 2020, 1-17. Wiley.
    Crossref OpenAlex OpenCitations
  23. C. Punshon , P. Skirrow , Glynis Murphy (2009). The `not guilty verdict' . Autism, 13(3), 265-283. SAGE Publications.
    Crossref OpenAlex OpenCitations
  24. Sarah Cassidy , K. Gould , E. Townsend , Mirabel Pelton , Ashley Robertson , Jacqui Rodgers (2020). Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample . Journal of Autism and Developmental Disorders, 50(10), 3638-3648. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  25. Schieve, Laura A. , Daniels, Julie , Christensen, Deborah , Yeargin-Allsopp, Marshalyn , Imm, Pamela , Baio, Jon et al. (2017). Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities . UNC Libraries. The University of North Carolina at Chapel Hill University Libraries.
    OpenCitations
  26. 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.
    Crossref OpenAlex OpenCitations
  27. Shinichi Nakagawa , Innes C. Cuthill (2007). Effect size, confidence interval and statistical significance: a practical guide for biologists . Biological Reviews, 82(4), 591-605. Wiley.
    Crossref OpenAlex OpenCitations
  28. Kyle M. Frost , Kathryn M. Bailey , Brooke R. Ingersoll (2019). “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum . Autism in Adulthood, 1(4), 268-275. SAGE Publications.
    Crossref OpenAlex OpenCitations
  29. 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 . Journal of Intellectual & Developmental Disability, 33(2), 99-107. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  30. Kirsten Corden , Rebecca Brewer , Eilidh Cage (2021). Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing . Frontiers in Psychology, 12, 699335-699335. Frontiers Media SA.
    Crossref OpenAlex OpenCitations
  31. 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
  32. 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.
    Crossref OpenAlex OpenCitations
  33. Jacquiline den Houting *Autistic author. Learn more… , Monique Botha *Autistic author. Learn more… , Eilidh Cage , Desiree R. Jones , So Yoon Kim (2021). Shifting stigma about autistic young people . The Lancet Child & Adolescent Health, 5(12), 839-841. Elsevier BV.
    Crossref OpenAlex OpenCitations
  34. Jaci C Huws , Robert SP Jones (2015). ‘I’m really glad this is developmental’: Autism and social comparisons – an interpretative phenomenological analysis . Autism, 19(1), 84-90. SAGE Publications.
    Crossref OpenAlex OpenCitations
  35. Sue Mesa , Lorna Hamilton (2022). “We are different, that’s a fact, but they treat us like we’re different-er”: understandings of autism and adolescent identity development . Advances in Autism, 8(3), 217-231. Emerald.
    Crossref OpenAlex OpenCitations
  36. Neil Humphrey , Sarah Lewis (2008). `Make me normal' . Autism, 12(1), 23-46. SAGE Publications.
    Crossref OpenAlex OpenCitations
  37. 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), 63-63. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  38. Laura Crane , Lok Man Lui , Jade Davies , Elizabeth Pellicano (2021). Autistic parents’ views and experiences of talking about autism with their autistic children . Autism, 25(4), 1161-1167. SAGE Publications.
    Crossref OpenAlex OpenCitations
  39. Anke Scheeren , J Marieke Buil , Patricia Howlin , Meike Bartels , Sander Begeer (2022). Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study . Autism, 26(1), 243-255. SAGE Publications.
    Crossref OpenAlex OpenCitations
  40. Steven K. Kapp *Autistic author. Learn more… , Kristen Gillespie-Lynch , Lauren E. Sherman , Ted Hutman (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0028353 OpenAlex: https://openalex.org/W2124715426
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  41. Jacqui Rodgers (2022). Re: Caron et al., 2021, sociocultural context and autistics quality of life: A comparison between Quebec and France . Autism, 26(2), 560-561. SAGE Publications.
    Crossref OpenAlex OpenCitations
  42. Hsiu-Fang Hsieh , Sarah E. Shannon (2005). Three Approaches to Qualitative Content Analysis . Qualitative Health Research, 15(9), 1277-1288. SAGE Publications.
    Crossref OpenAlex OpenCitations
  43. Trevor Powell , Louise Acker (2016). Adults’ Experience of an Asperger Syndrome Diagnosis . Focus on Autism and Other Developmental Disabilities, 31(1), 72-80. SAGE Publications.
    Crossref OpenAlex OpenCitations
  44. 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.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  45. Elena Ilioi , Lucy Blake , Vasanti Jadva , Gabriela Roman , Susan Golombok (2017). The role of age of disclosure of biological origins in the psychological wellbeing of adolescents conceived by reproductive donation: a longitudinal study from age 1 to age 14 . Journal of Child Psychology and Psychiatry, 58(3), 315-324. Wiley.
    Crossref OpenAlex OpenCitations
  46. 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
  47. Maureen S. Durkin , Matthew J. Maenner , Jon Baio , Deborah Christensen , Julie Daniels , Robert Fitzgerald et al. (2017). Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities . American Journal of Public Health, 107(11), 1818-1826. American Public Health Association.
    Crossref OpenAlex
  48. 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 OpenCitations
  49. Priyanka Fernandes , Madeline Haley , Kevin Eagan , Paul Shattuck , Alice A. Kuo (2021). Health Needs and College Readiness in Autistic Students: The Freshman Survey Results . Journal of Autism and Developmental Disorders, 51(10), 3506-3513. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  50. Meng-Chuan Lai , Péter Szatmári (2020). Sex and gender impacts on the behavioural presentation and recognition of autism . Current Opinion in Psychiatry, 33(2), 117-123. Ovid Technologies (Wolters Kluwer Health).
    Crossref OpenAlex OpenCitations
  51. Laura Fusar-Poli , Natascia Brondino , Pierluigi Politi , Eugenio Aguglia (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder . European Archives of Psychiatry and Clinical Neuroscience, 272(2), 187-198. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  52. Christina G. McDonnell , Elizabeth A. DeLucia , Elizabeth P. Hayden , Melanie Penner , Kristina Curcin , Evdokia Anagnostou et al. (2021). Sex Differences in Age of Diagnosis and First Concern among Children with Autism Spectrum Disorder . Journal of Clinical Child & Adolescent Psychology, 50(5), 645-655. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  53. 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 OpenCitations
  54. Kristen Gillespie-Lynch , Nidal Daou , Rita Obeid , Siobhan Reardon , Spogmay Khan , Emily J. Goldknopf (2021). What Contributes to Stigma Towards Autistic University Students and Students with Other Diagnoses? Journal of Autism and Developmental Disorders, 51(2), 459-475. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  55. Catherine D. Tan (2018). “I'm a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination . Social Science & Medicine, 197, 161-167. Elsevier BV.
    Crossref OpenAlex OpenCitations
  56. Gabrielle B. Gunin , Amy Gravino , Vanessa Bal (2021). Advancing Mental Health Supports for Autistic Postsecondary Students: A Call for Research . Autism in Adulthood, 3(1), 30-36. SAGE Publications.
    Crossref OpenAlex OpenCitations
  57. Amanda D. Smith-Demers (2018). The Elephant in the Room: The Lived Experience of Talking to Children with ASD about their Diagnosis . Libraries and Cultural Resources (University of Calgary). Graduate Studies.
    Type: Dissertation DOI: 10.11575/prism/32049 OpenAlex: https://openalex.org/W2810442754
    OpenAlex
  58. Adam W. McCrimmon , Shawna M. Gray (2021). A Systematic Review of Factors Relating to Parental Satisfaction with the Diagnostic Process for Autism Spectrum Disorder . Review Journal of Autism and Developmental Disorders, 8(3), 334-349. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  59. Alexandra Sturm , Connie Kasari (2019). Academic and psychosocial characteristics of incoming college freshmen with autism spectrum disorder: The role of comorbidity and gender . Autism Research, 12(6), 931-940. Wiley.
    Type: Article DOI: 10.1002/aur.2099 OpenAlex: https://openalex.org/W2936746587
    Crossref OpenAlex OpenCitations
  60. Jones G. (2001). bibr40-13623613221086700 Good Autism Practice, 2(2), 65.
    Type: Other
    Crossref
  61. 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), 135-146. SAGE Publications.
    Crossref OpenAlex OpenCitations
  62. Sandy Thompson-Hodgetts , Chantal Labonte , Rinita Mazumder , Shanon Phelan (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others . Research in Autism Spectrum Disorders, 77, 101598. Elsevier BV.
    Crossref OpenAlex OpenCitations
  63. Marriage S. (2009). bibr47-13623613221086700 Journal of the Canadian Academy of Child and Adolescent Psychiatry, 18(4), 322.
    Type: Other
    Crossref
  64. Singer J (2016). Neurodiversity: The birth of an idea . Neurodiversity: The birth of an idea.
    Type: Other
    Crossref
  65. Smith-Demers A. D. (2018). The elephant in the room: The lived experience of talking to children with ASD about their diagnosis [Unpublished doctoral thesis]. University of Calgary. https://doi.org/10 . 11575/PRISM/32049
    Type: Other
    Crossref
  66. Ward E. (2014). Parental accounts of sharing an autism spectrum diagnosis with their child: A thematic analysis [Doctoral dissertation], University of Nottingham.
    Type: Other
    Crossref