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 markerPavlopoulou, 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
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Authors
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.
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Carla Mazefsky , Susan W White (2014). Emotion Regulation . Child and Adolescent Psychiatric Clinics of North America, 23(1), 15-24. Elsevier BV.Crossref OpenAlex
-
S. Baron-Cohen (1997). Mindblindness: An essay on autism and theory of mind . Mindblindness: An essay on autism and theory of mind.Type: OtherCrossref
-
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
-
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
-
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
-
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
-
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
-
Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.Crossref OpenAlex
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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.Crossref OpenAlex
-
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
-
Mark Cohen (2017). A systemic approach to understanding mental health and services . Social Science & Medicine, 191, 1-8. Elsevier BV.Crossref OpenAlex
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
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
-
Sue Fletcher-Watson , Geoffrey Bird (2020). Autism and empathy: What are the real links? Autism, 24(1), 3-6. SAGE Publications.Crossref OpenAlex
-
Damian Santomauro *Autistic author. Learn more… , Jeanie Sheffield , Kate Sofronoff (2017). Investigations into emotion regulation difficulties among adolescents and young adults with autism spectrum disorder: A qualitative study . Journal of Intellectual & Developmental Disability, 42(3), 275-284. Informa UK Limited.
-
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
-
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
-
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.Crossref OpenAlex
-
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
-
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
-
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
-
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.Crossref OpenAlex
-
Myrofora Kakoulidou , Georgia Pavlopoulou , Susie Chandler , Steve Lukito , Maciej Matejko *Autistic author. Learn more… , Isabel Jackson et al. (2024). Deepening the participation of neurodivergent youth in qualitative mental health research: Co‐development of a general approach and the evaluation of its implementation in a study on emotion . JCPP Advances, 4(4), e12287. Wiley.
-
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
-
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
-
Glenn Wilson (1996). Mindblindness—an essay on autism and theory of mind . Personality and Individual Differences, 20(2), 278-279. Elsevier BV.OpenAlex
-
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
-
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
-
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
-
Elaine McGreevy *Autistic author. Learn more… , Alexis Quinn *Autistic author. Learn more… , Roslyn Law , Monique Botha *Autistic author. Learn more… , Mairi Evans , Kieran Rose *Autistic author. Learn more… et al. (2026). An Experience Sensitive Approach to Care With and for Autistic Children and Young People in Clinical Services . Journal of Humanistic Psychology, 66(1), 107-133. SAGE Publications.
-
Ailbhe McKinney , Sarah O’Brien *Autistic author. Learn more… , Jacqueline A. Maybin , Stella W. Y. Chan , Simone Richer , Sinead Rhodes (2024). Camouflaging in neurodivergent and neurotypical girls at the transition to adolescence and its relationship to mental health: A participatory methods research study . JCPP Advances, 4(4), e12294-e12294. Wiley.
-
NIHR, C (2021). Payment guidance for researchers and professionals . Payment guidance for researchers and professionals.Type: OtherCrossref
-
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
-
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
-
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
-
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
-
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.Crossref OpenAlex
-
Edmund J.S. Sonuga-Barke , Susie Chandler , Steve Lukito , Myrofora Kakoulidou , Graham Moore , Niki Cooper et al. (2024). Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research . The British Journal of Psychiatry, 224(4), 127-131. Royal College of Psychiatrists.
-
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
-
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