Upsetting experiences in the lives of neurodivergent young people: A qualitative analysis of accounts of adolescents diagnosed with attention‐deficit/hyperactivity disorder and/or autism

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

Pavlopoulou, G., Chandler, S., Lukito, S., Kakoulidou, M., Jackson, I., Ly, E., Matejko, M., Balwani, B., Boyens, T., Poulton, D., Harvey-Nguyen, L., Baker, S., Sonuga-Barke, E. J., & team, t. R. (2025). Upsetting experiences in the lives of neurodivergent young people: A qualitative analysis of accounts of adolescents diagnosed with attention‐deficit/hyperactivity disorder and/or autism. JCPP Advances, 6(2), Article e70038. https://doi.org/10.1002/jcv2.70038

Publication date: 19 Aug 2025 Added to AutiHub: 16 Oct 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
14
Publication authors identified as autistic
1 / 14 (7.1%)

Abstract

Abstract Background Accounts of emotional dysregulation in autism and attention‐deficit/hyperactivity disorder (ADHD) are typically based on external adult observations anchored in neurotypical notions of emotional responding. These often fail to place neurodivergent people's emotional responses in the context of the upsetting experiences they face; information best provided by the young people themselves. Methods We interviewed 57 adolescents (11–15 years; 19 females) with diagnoses of ADHD (n = 24), autism (n = 21) or both (n = 12), about their experience of upsetting events using a co‐designed semi‐structured interview schedule. Reflexive thematic analysis generated shared themes with diagnosis‐specific nuances. Results Four themes were extracted: social dislocation, alienation and conflict; need to mask; self‐doubt, loathing, embarrassment; and over stimulation/sensory mismatch. Upsetting experiences, for ADHD participants, were typically perceived as instigated by external agents trying to impose control, and/or a sense of injustice; for autistic participants they often related to feelings of ‘not belonging’ and alienation. Masking, for autistic participants, included ‘hiding’ negative emotions to protect others from their intensity; whereas in ADHD, masking usually involved supressing emotional upset to protect oneself from conflict or consequences. Those with a joint diagnosis reported a combination of these experiences, often felt more intensely. Conclusions First‐person accounts of emotional responding could provide new insights with potential to refine current dysregulation‐based accounts of ADHD or autism.

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: 17 Oct 2026 01:01.

Cited references
63
With a DOI
61
Without a DOI, from raw bibliography text
2
6 / 63 (9.5%) cited references include at least one author identified as autistic.
References with data to complete
0 / 63 (0.0%)
References with detected author names
63 / 63 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
2
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
307
From DOI or external metadata
307
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
139 / 307 (45.3%) names are linked to an author already present in AutiHub. 168 / 307 (54.7%) names are not yet linked.
Names linked to a person identified as autistic
12 / 307 (3.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 12 / 139 (8.6%). Distinct people identified as autistic: 10 / 246 (4.1%).
  1. Carla Mazefsky , Susan W White (2014). Emotion Regulation . Child and Adolescent Psychiatric Clinics of North America, 23(1), 15-24. Elsevier BV.
    Crossref OpenAlex
  2. S. Baron-Cohen (1997). Mindblindness: An essay on autism and theory of mind . Mindblindness: An essay on autism and theory of mind.
    Type: Other
    Crossref
  3. Nora Bunford , Steven W. Evans , Frances Wymbs (2015). ADHD and Emotion Dysregulation Among Children and Adolescents . Clinical Child and Family Psychology Review, 18(3), 185-217. Springer Science and Business Media LLC.
    Crossref OpenAlex
  4. S. Baron-Cohen , Alan M. Leslie , Uta Frith (1985). Does the autistic child have a “theory of mind”? Cognition, 21(1), 37-46. Elsevier BV.
    Crossref OpenAlex
  5. Laudan B. Jahromi , Shantel E. Meek , Sharman Ober‐Reynolds (2012). Emotion regulation in the context of frustration in children with high functioning autism and their typical peers . Journal of Child Psychology and Psychiatry, 53(12), 1250-1258. Wiley.
    Crossref OpenAlex
  6. Alexandra Basile , Maggie E. Toplak , Brendan F. Andrade (2021). Using Metacognitive Methods to Examine Emotion Recognition in Children With ADHD . Journal of Attention Disorders, 25(2), 245-257. SAGE Publications.
    Crossref OpenAlex
  7. Susan W White , Carla Mazefsky , Gabriel S. Dichter , Pearl H. Chiu , John A. Richey , Thomas H. Ollendick (2014). Social‐cognitive, physiological, and neural mechanisms underlying emotion regulation impairments: understanding anxiety in autism spectrum disorder . International Journal of Developmental Neuroscience, 39(1), 22-36. Wiley.
    Crossref OpenAlex
  8. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Crossref OpenAlex
  9. Monica Cavanagh , Declan Quinn , Don Duncan , Tom Graham , Lloyd Balbuena (2017). Oppositional Defiant Disorder Is Better Conceptualized as a Disorder of Emotional Regulation . Journal of Attention Disorders, 21(5), 381-389. SAGE Publications.
    Crossref OpenAlex
  10. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Crossref OpenAlex
  11. Josh M. Cisler , Bunmi O. Olatunji , Matthew T. Feldner , John P. Forsyth (2010). Emotion Regulation and the Anxiety Disorders: An Integrative Review . Journal of Psychopathology and Behavioral Assessment, 32(1), 68-82. Springer Science and Business Media LLC.
    Crossref OpenAlex
  12. Ru Ying Cai , Amanda Richdale , Cheryl Dissanayake , Mirko Uljarević (2020). How Does Emotion Regulation Strategy Use and Psychological Wellbeing Predict Mood in Adults With and Without Autism Spectrum Disorder? A Naturalistic Assessment . Journal of Autism and Developmental Disorders, 50(5), 1786-1799. Springer Science and Business Media LLC.
    Crossref OpenAlex
  13. Ovsanna T. Leyfer , Susan E. Folstein , Susan Bacalman , Naomi Davis , Elena Dinh , Jubel Morgan et al. (2006). Comorbid Psychiatric Disorders in Children with Autism: Interview Development and Rates of Disorders . Journal of Autism and Developmental Disorders, 36(7), 849-861. Springer Science and Business Media LLC.
    Crossref OpenAlex
  14. Karen Campbell , Elizabeth Orr , Pamela Durepos , Linda Nguyen , Lin Li , Carly Whitmore et al. (2021). Reflexive Thematic Analysis for Applied Qualitative Health Research . The Qualitative Report, 26(6). Nova Southeastern University.
    Crossref OpenAlex
  15. Kim L. Gratz , Lizabeth Roemer (2004). Multidimensional Assessment of Emotion Regulation and Dysregulation: Development, Factor Structure, and Initial Validation of the Difficulties in Emotion Regulation Scale . Journal of Psychopathology and Behavioral Assessment, 26(1), 41-54. Springer Science and Business Media LLC.
    Crossref OpenAlex
  16. Virginia Carter Leno , Georgia Forth , Susie Chandler , Philippa White , Isabel Yorke , Tony Charman et al. (2021). Behavioural and physiological response to frustration in autistic youth: associations with irritability . Journal of Neurodevelopmental Disorders, 13(1), 27. Springer Science and Business Media LLC.
    Crossref OpenAlex
  17. Karen E. Seymour , Andrea Chronis-Tuscano , Derek K. Iwamoto , Gretchen Kurdziel , Laura MacPherson (2014). Emotion Regulation Mediates the Association Between ADHD and Depressive Symptoms in a Community Sample of Youth . Journal of Abnormal Child Psychology, 42(4), 611-621. Springer Science and Business Media LLC.
    Crossref OpenAlex
  18. Caricia Catalani , Meredith Minkler (2010). Photovoice: A Review of the Literature in Health and Public Health . Health Education & Behavior, 37(3), 424-451. SAGE Publications.
    Crossref OpenAlex
  19. Sara Cibralic , Jane Kohlhoff , Nancy Wallace , Catherine McMahon , Valsamma Eapen (2019). A systematic review of emotion regulation in children with Autism Spectrum Disorder . Research in Autism Spectrum Disorders, 68, 101422. Elsevier BV.
    Crossref OpenAlex
  20. Carla Mazefsky , Xenia Borue , Taylor N. Day , Nancy J. Minshew (2014). Emotion Regulation Patterns in Adolescents With High‐Functioning Autism Spectrum Disorder: Comparison to Typically Developing Adolescents and Association With Psychiatric Symptoms . Autism Research, 7(3), 344-354. Wiley.
    Type: Article DOI: 10.1002/aur.1366 OpenAlex: https://openalex.org/W2128240130
    Crossref OpenAlex
  21. Kandyce Larson , Shirley A. Russ , Robert S. Kahn , Neal Halfon (2011). Patterns of Comorbidity, Functioning, and Service Use for US Children With ADHD, 2007 . Pediatrics, 127(3), 462-470. American Academy of Pediatrics (AAP).
    Crossref OpenAlex
  22. Mark Cohen (2017). A systemic approach to understanding mental health and services . Social Science & Medicine, 191, 1-8. Elsevier BV.
    Crossref OpenAlex
  23. Bruce E. Compas , Glen E. Davis , Carolyn J. Forsythe , Barry M. Wagner (1987). Assessment of major and daily stressful events during adolescence: The Adolescent Perceived Events Scale. Journal of Consulting and Clinical Psychology, 55(4), 534-541. American Psychological Association (APA).
    Crossref OpenAlex
  24. Pamela M. Cole , Sarah E. Hall , Nastassia J. Hajal (2017). Emotion Dysregulation as a Vulnerability to Psychopathology . In Emotion Dysregulation as a Vulnerability to Psychopathology (pp. 346-386). Wiley.
    Crossref OpenAlex
  25. Hilde M. Geurts , Sylvie Verté , Jaap Oosterlaan , Herbert Roeyers , Joseph A. Sergeant (2004). How specific are executive functioning deficits in attention deficit hyperactivity disorder and autism? Journal of Child Psychology and Psychiatry, 45(4), 836-854. Wiley.
    Crossref OpenAlex
  26. Emily Simonoff , Andrew Pickles , Tony Charman , Susie Chandler , Tom Loucas , Gillian Baird (2008). Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample . Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929. Elsevier BV.
    Crossref OpenAlex
  27. Caitlin M Conner , Susan W White , Lawrence Scahill , Carla Mazefsky (2020). The role of emotion regulation and core autism symptoms in the experience of anxiety in autism . Autism, 24(4), 931-940. SAGE Publications.
    Crossref OpenAlex
  28. Janice M. Morse , Michael Barrett , Maria Mayan , Karin Olson , Jude Spiers (2002). Verification Strategies for Establishing Reliability and Validity in Qualitative Research . International Journal of Qualitative Methods, 1(2), 13-22. SAGE Publications.
    Crossref OpenAlex
  29. Alan S. Cowen , Dacher Keltner (2017). Self-report captures 27 distinct categories of emotion bridged by continuous gradients . Proceedings of the National Academy of Sciences, 114(38), E7900-E7909. National Academy of Sciences.
    Crossref OpenAlex
  30. Philip Shaw , Argyris Stringaris , Joel Nigg , Ellen Leibenluft (2014). Emotion Dysregulation in Attention Deficit Hyperactivity Disorder . American Journal of Psychiatry, 171(3), 276-293. American Psychiatric Association Publishing.
    Crossref OpenAlex
  31. Laura Eccleston , James Williams Jr. *Autistic author. Learn more… , Sue Knowles , Laura Soulsby (2019). Adolescent experiences of living with a diagnosis of ADHD: a systematic review and thematic synthesis . Emotional and Behavioural Difficulties, 24(2), 119-135. Informa UK Limited.
    Crossref OpenAlex
  32. Rick E. Ingram , David D. Luxton (2005). Vulnerability-Stress Models . In Development of Psychopathology: A Vulnerability-Stress Perspective (pp. 32-46). SAGE Publications, Inc..
    Crossref OpenAlex
  33. Olga Eyre , Kate Langley , Argyris Stringaris , Ellen Leibenluft , Stephan Collishaw , Anita Thapar (2017). Irritability in ADHD: Associations with depression liability . Journal of Affective Disorders, 215, 281-287. Elsevier BV.
    Crossref OpenAlex
  34. Julie Lounds Taylor , Katherine Gotham (2016). Cumulative life events, traumatic experiences, and psychiatric symptomatology in transition-aged youth with autism spectrum disorder . Journal of Neurodevelopmental Disorders, 8(1), 28. Springer Science and Business Media LLC.
    Crossref OpenAlex
  35. Graeme Fairchild , David J. Hawes , Paul J. Frick , William E. Copeland , Candice L. Odgers , Barbara Franke et al. (2019). Conduct disorder . Nature Reviews Disease Primers, 5(1), 43-43. Springer Science and Business Media LLC.
    Crossref OpenAlex
  36. Jutta Joormann , Colin H. Stanton (2016). Examining emotion regulation in depression: A review and future directions . Behaviour Research and Therapy, 86, 35-49. Elsevier BV.
    Crossref OpenAlex
  37. Sue Fletcher-Watson , Geoffrey Bird (2020). Autism and empathy: What are the real links? Autism, 24(1), 3-6. SAGE Publications.
    Crossref OpenAlex
  38. Alexis M. Garcia , Dassiell Medina , Margaret H. Sibley (2019). Conflict between Parents and Adolescents with ADHD: Situational Triggers and the Role of Comorbidity . Journal of Child and Family Studies, 28(12), 3338-3345. Springer Science and Business Media LLC.
    Crossref OpenAlex
  39. on behalf of Lombardy ADHD Group , Laura Reale , Beatrice Bartoli , Massimo Cartabia , Michele Zanetti , Maria Antonella Costantino et al. (2017). Comorbidity prevalence and treatment outcome in children and adolescents with ADHD . European Child & Adolescent Psychiatry, 26(12), 1443-1457. Springer Science and Business Media LLC.
    Crossref OpenAlex
  40. Vicki Gibbs , Jennie Hudson , Elizabeth Pellicano (2023). Poly‐victimization of autistic adults: An investigation of individual‐level correlates . Autism Research, 16(12), 2336-2349. Wiley.
    Type: Article DOI: 10.1002/aur.3031 OpenAlex: https://openalex.org/W4386945124
    Crossref OpenAlex
  41. Anna Shushakova , Patricia Ohrmann , Anya Pedersen (2018). Exploring deficient emotion regulation in adult ADHD: electrophysiological evidence . European Archives of Psychiatry and Clinical Neuroscience, 268(4), 359-371. Springer Science and Business Media LLC.
    Crossref OpenAlex
  42. Nicole B. Groves , Erica L. Wells , Elia F. Soto , Carolyn L. Marsh , Emma M. Jaisle , T. Kathy Harvey et al. (2022). Executive Functioning and Emotion Regulation in Children with and without ADHD . Research on Child and Adolescent Psychopathology, 50(6), 721-735. Springer Science and Business Media LLC.
    Crossref OpenAlex
  43. Stephanie J. Howe , Laura Hull , Felicity Sedgewick , Benjamin Hannon , Carly A. McMorris (2023). Understanding camouflaging and identity in autistic children and adolescents using photo-elicitation . Research in Autism Spectrum Disorders, 108, 102232. Elsevier BV.
    Crossref OpenAlex
  44. Carla Mazefsky , Lan Yu , Susan W White , Matthew Siegel , Paul A. Pilkonis (2018). The emotion dysregulation inventory: Psychometric properties and item response theory calibration in an autism spectrum disorder sample . Autism Research, 11(6), 928-941. Wiley.
    Type: Article DOI: 10.1002/aur.1947 OpenAlex: https://openalex.org/W2796255538
    Crossref OpenAlex
  45. Meng-Chuan Lai , Caroline Kassee , Richard Besney , Sarah Bonato , Laura Hull , William 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
  46. Johanna Kehusmaa , Heidi Ruotsalainen , Niko Männikkö , Anni-Emilia Alakokkare , Mika Niemelä , Erika Jääskeläinen et al. (2022). The association between the social environment of childhood and adolescence and depression in young adulthood - A prospective cohort study . Journal of Affective Disorders, 305, 37-46. Elsevier BV.
    Crossref OpenAlex
  47. Glenn Wilson (1996). Mindblindness—an essay on autism and theory of mind . Personality and Individual Differences, 20(2), 278-279. Elsevier BV.
    OpenAlex
  48. Steve Lukito , Susie Chandler , Myrofora Kakoulidou , Kirsty Griffiths , Anna Wyatt , Eloise Funnell et al. (2025). Emotional burden in school as a source of mental health problems associated with ADHD and/or autism: Development and validation of a new co‐produced self‐report measure . Journal of Child Psychology and Psychiatry, 66(10), 1577-1592. Wiley.
    Crossref OpenAlex
  49. Eleanor M. G. Mansfield , Anita Soni (2024). ‘I have it, so I understand it, I feel it’: The secondary school experiences of adolescent females with ADHD in England . Journal of Research in Special Educational Needs, 24(3), 681-695. Wiley.
    Crossref OpenAlex
  50. Georgia Pavlopoulou (2020). A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts . Frontiers in Psychology, 11(2020), 583868. Frontiers Media SA.
    Crossref OpenAlex
  51. NIHR, C (2021). Payment guidance for researchers and professionals . Payment guidance for researchers and professionals.
    Type: Other
    Crossref
  52. Georgia Pavlopoulou , Clare Burns , Rosie Cleghorn , Theodora Skyrla , Julia Avnon (2022). “I often have to explain to school staff what she needs”. School experiences of non-autistic siblings growing up with an autistic brother or sister . Research in Developmental Disabilities, 129, 104323. Elsevier BV.
    Crossref OpenAlex
  53. Ana-María Soler-Gutiérrez , Juan-Carlos Pérez-González , Julia Mayas (2023). Evidence of emotion dysregulation as a core symptom of adult ADHD: A systematic review . PLOS ONE, 18(1), e0280131. Public Library of Science (PLoS).
    Crossref OpenAlex
  54. Sinead Rhodes , Christopher B. Eaton , Jessica Oldridge , Jacqui Rodgers , Stella W. Y. Chan , Ereni Skouta et al. (2023). Lived experiences of depression in autistic children and adolescents: A qualitative study on child and parent perspectives . Research in Developmental Disabilities, 138, 104516. Elsevier BV.
    Crossref OpenAlex
  55. Edmund J.S. Sonuga-Barke (2023). Paradigm ‘flipping’ to reinvigorate translational science: Outlining a neurodevelopmental science framework from a ‘neurodiversity’ perspective . Journal of Child Psychology and Psychiatry, 64(10), 1405-1408. Wiley.
    Crossref OpenAlex
  56. W. J. van der Putten , A. J. J. Mol , A. P. Groenman , T. A. Radhoe , C. Torenvliet , J. A. Agelink van Rentergem et al. (2024). Is camouflaging unique for autism? A comparison of camouflaging between adults with autism and ADHD . Autism Research, 17(4), 812-823. Wiley.
    Type: Article DOI: 10.1002/aur.3099 OpenAlex: https://openalex.org/W4391613946
    Crossref OpenAlex
  57. Edmund J.S. Sonuga-Barke , Melanie Palmer , Kirsty Griffiths , Anna Wyatt , Andrea Danese , Susie Chandler et al. (2024). Why do attention‐deficit/hyperactive disorder and/or autism traits place adolescents at risk for depression? Protocol for a longitudinal comparison of the mediating role of emotion regulation deficits versus emotional burden . Journal of Child Psychology and Psychiatry Advances. Center for Open Science.
    Crossref OpenAlex
  58. Edmund J.S. Sonuga-Barke , Melanie Palmer , Kirsty Griffiths , Anna Wyatt , Andrea Danese , Susie Chandler et al. (2025). Why do attention-deficit/hyperactive disorder and/or autism traits place adolescents at risk for depression? Protocol for a longitudinal comparison of the mediating role of emotion regulation deficits versus emotional burden . Center for Open Science.
    OpenAlex