Une approche sensible à l'expérience des soins avec et pour les enfants et les jeunes autistes dans les services cliniques

Titre original en anglais : An Experience Sensitive Approach to Care With and for Autistic Children and Young People in Clinical Services

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref OpenCitations
En savoir plus sur les sources utilisées

McGreevy, E., Quinn, A., Law, R., Botha, M., Evans, M., Rose, K., Moyse, R., Boyens, T., Matejko, M., & Pavlopoulou, G. (2024). 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. https://doi.org/10.1177/00221678241232442

Date de publication: 15/03/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
10
Auteur·ices de la publication identifié·es comme autistes
3 / 10 (30,0 %)
  1. Elaine McGreevy
  2. Alexis Quinn *
  3. Roslyn Law
  4. Monique Botha *
  5. Mairi Evans
  1. Kieran Rose *
  2. Ruth Moyse
  3. Tiegan Boyens
  4. Maciej Matejko
  5. Georgia Pavlopoulou

Résumé

De nombreux dispositifs de soutien dans les services cliniques actuels de l'autisme destinés aux enfants et aux jeunes reposent sur des notions de neuro-normalité mettant l'accent sur le comportement. De telles approches du neuro-trouble minent progressivement la personne, restreignent l'expression authentique de soi et ne parviennent pas à prendre en compte l'impact d'un monde hostile sur le bien-être autiste. En outre, ces approches détournent l'attention d'un défi fondamental : conceptualiser un cadre alternatif de soins, éclairé par l'humanisme, pour le personnel travaillant avec des enfants et des jeunes autistes diagnostiqués ou non diagnostiqués. Dans cet article, nous proposons une appréciation du modèle de soins guidé par le monde vécu de Todres et al. Nous examinons comment les praticiens de la santé mentale peuvent adopter un cadre de soins de santé sensible à l'expérience en intégrant les huit dimensions des soins dans la pratique. Cette approche neuroinclusive crée une culture du respect, honore la souveraineté de la personne, donne la priorité à la personnalisation des soins fondée sur la prise de décision collaborative et permet aux praticiens de soutenir le bien-être selon une perspective existentielle et humaniste, ancrée dans l'acceptation de la diversité autiste des manières d'être. Sans un changement fondamental vers un tel soutien affirmant la neurodivergence, les praticiens devant être disposés à transformer leur compréhension, aucun véritable progrès ne peut être accompli pour prévenir de mauvais résultats en matière de santé mentale chez les personnes autistes tout au long de la vie. Ce changement est nécessaire pour modifier les pratiques dans les contextes de recherche, cliniques et éducatifs.

Many support schemes in current autism clinical services for children and young people are based on notions of neuro-normativity with a behavioral emphasis. Such neuro-disorder approaches gradually undermine a person, restrain authentic self-expression, and fail to address the impact of a hostile world on autistic well-being. Furthermore, such approaches obscure attention from a fundamental challenge to conceptualize an alternative humanistic informed framework of care for staff working with diagnosed or undiagnosed autistic children and young people. In this article, we offer an appreciation of the lifeworld-led model of care by Todres et al. We discuss how mental health practitioners can adopt an experience-sensitive framework of health care by incorporating the eight dimensions of care into practice. This neuroinclusive approach creates a culture of respect, honors the sovereignty of the person, prioritizes personalization of care based on collaborative decision-making, and enables practitioners to support well-being from an existential, humanistic view, grounded in acceptance of autistic diversity of being. Without a fundamental shift toward such neurodivergence-affirming support with practitioners being willing to transform their understanding, real progress cannot happen to prevent poor mental health outcomes for autistic people across the lifespan. This shift is needed to change practice across research, clinical, and educational contexts.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
60
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
11 / 60 (18,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
49 / 176 (27,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 49 / 100 (49,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 40 / 163 (24,5 %).
Occurrences citées rattachées à la base AutiHub
100 / 176 (56,8 %)
Auteurices cité·es distinct·es rattaché·es : 87 / 163 (53,4 %)
Occurrences rattachées, non identifiées comme autistes
51 / 100 (51,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 51 / 176 (29,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 47 / 87 (54,0 %).
  1. (2011). Self-objectification in women: Causes, consequences, and counteractions. American Psychological Association.
    Type: Livre DOI: 10.1037/12304-000 OpenAlex: https://openalex.org/W1530740999
    Crossref OpenAlex OpenCitations
  2. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Livre DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  3. David Ariel Sher , Jenny L. Gibson (2023). Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia . European Child & Adolescent Psychiatry, 32(3), 475-490. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00787-021-01875-7 OpenAlex: https://openalex.org/W3200542721
    Crossref OpenAlex OpenCitations
  4. Hans Asperger (1944). Die „Autistischen Psychopathen” im Kindesalter . Archiv für Psychiatrie und Nervenkrankheiten, 117(1), 76-136. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf01837709 OpenAlex: https://openalex.org/W1965210252
    Crossref OpenAlex OpenCitations
  5. Tatja Hirvikoski , Ellenor Mittendorfer-Rutz , Marcus Boman , Henrik Larsson , Paul Lichtenstein , Sven Bölte (2016). Premature mortality in autism spectrum disorder . British Journal of Psychiatry, 208(3), 232-238. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.114.160192 OpenAlex: https://openalex.org/W2168424072
    Crossref OpenAlex OpenCitations
  7. Simon Baron-Cohen , Alan M. Leslie , Uta Frith (1985). Does the autistic child have a “theory of mind”? Cognition, 21(1), 37-46. Elsevier BV.
    Type: Article DOI: 10.1016/0010-0277(85)90022-8 OpenAlex: https://openalex.org/W2093410327
    Crossref OpenAlex OpenCitations
  8. Ofer Golan , Nirit Haruvi-Lamdan , Nathaniel Laor , Danny Horesh (2022). The comorbidity between autism spectrum disorder and post-traumatic stress disorder is mediated by brooding rumination . Autism, 26(2), 538-544. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211035240 OpenAlex: https://openalex.org/W3184929652
    Crossref OpenAlex OpenCitations
  9. Lorna Wing , Judith Gould (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification . Journal of Autism and Developmental Disorders, 9(1), 11-29. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf01531288 OpenAlex: https://openalex.org/W1970293309
    Crossref OpenAlex OpenCitations
  10. A. J. Baxter , Traolach Brugha , H. E. Erskine , R. W. Scheurer , T. Vos , J. G. Scott (2015). The epidemiology and global burden of autism spectrum disorders . Psychological Medicine, 45(3), 601-613. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s003329171400172x OpenAlex: https://openalex.org/W2171607710
    Crossref OpenAlex OpenCitations
  12. Sally Ozonoff , Bruce F. Pennington , Sally J. Rogers (1991). Executive Function Deficits in High‐Functioning Autistic Individuals: Relationship to Theory of Mind . Journal of Child Psychology and Psychiatry, 32(7), 1081-1105. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.1991.tb00351.x OpenAlex: https://openalex.org/W1993462172
    Crossref OpenAlex OpenCitations
  13. Bettelheim B. (1967). The empty fortress: infantile autism and the birth of the self . The empty fortress: infantile autism and the birth of the self.
    Type: Autre
    Crossref
  15. Eric Schopler , Robert J. Reichler (1971). Parents as cotherapists in the treatment of psychotic children . Journal of Autism and Childhood Schizophrenia, 1(1), 87-102. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf01537746 OpenAlex: https://openalex.org/W1993779134
    Crossref OpenAlex OpenCitations
  17. Simon M. Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04425-3 OpenAlex: https://openalex.org/W3007056653
    Crossref OpenAlex OpenCitations
  18. Les Todres , Kathleen T. Galvin , Immy Holloway (2009). The humanization of healthcare: A value framework for qualitative research . International Journal of Qualitative Studies on Health and Well-being, 4(2), 68-77. Informa UK Limited.
    Type: Article DOI: 10.1080/17482620802646204 OpenAlex: https://openalex.org/W2030024645
    Crossref OpenAlex OpenCitations
  19. 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.
    Type: Article DOI: 10.1007/s40489-022-00330-w OpenAlex: https://openalex.org/W4285588766
    Crossref OpenAlex OpenCitations
  20. Naustin Deslauriers (1967). The Empty Fortress: Infantile Autism and the Birth of the Self. Archives of General Psychiatry, 17(4), 510. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archpsyc.1967.01730280126018 OpenAlex: https://openalex.org/W2050405400
    OpenAlex
  21. 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.
    Type: Article DOI: 10.1007/s10803-019-04323-3 OpenAlex: https://openalex.org/W2993272702
    Crossref OpenAlex OpenCitations
  24. Georgia Pavlopoulou (2020). A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts . Frontiers in Psychology, 11, 583868-583868. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2020.583868 OpenAlex: https://openalex.org/W3115088354
    Crossref OpenAlex OpenCitations
  25. Sula Wolff (2004). Autism: Explaining the enigma. Journal of Child Psychology and Psychiatry, 45(1), 172-173. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.2004.t01-3-00211.x OpenAlex: https://openalex.org/W2111882181
    OpenAlex
  26. Laura Crane , James W Chester , Lorna Goddard , Lucy A Henry , Elisabeth L. Hill (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom . Autism, 20(2), 153-162. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315573636 OpenAlex: https://openalex.org/W2118478153
    Crossref OpenAlex OpenCitations
  27. Chinese Autism (2024). Chinese Autism. (2024). Chinese Autism Community Interest Company (CACIC). Chinese Autism Community Interest Company (CACIC).
    Type: Autre
    Crossref
  28. Clements L. Aiello L. (2021). Institutionalising Parent Carer Blame: The experiences of families with disabled children in their interactions with English local authority children’s services departments. University of Leeds; CEREBRA. https://cerebra.org.uk
    Type: Autre
    Crossref
  29. Michelle I Malwane , Eric B Nguyen , Sergio Trejo , Erica Y Kim , José R Cucalón-Calderón (2022). A Delayed Diagnosis of Autism Spectrum Disorder in the Setting of Complex Attention Deficit Hyperactivity Disorder . Cureus, 14(6), e25825-e25825. Springer Science and Business Media LLC.
    Type: Article DOI: 10.7759/cureus.25825 OpenAlex: https://openalex.org/W4283380959
    Crossref OpenAlex OpenCitations
  30. Laura Crane , Fern Adams , Georgia Harper , Jack Welch , Elizabeth Pellicano (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism, 23(2), 477-493. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318757048 OpenAlex: https://openalex.org/W2787370458
    Crossref OpenAlex OpenCitations
  31. Anna Fridell , Christina Coco , Anna Borg , Sven Bölte (2023). School-based social skills group training (SKOLKONTAKT™): a pilot randomized controlled trial . Frontiers in Psychology, 14, 1128288-1128288. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2023.1128288 OpenAlex: https://openalex.org/W4385368342
    Crossref OpenAlex OpenCitations
  32. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315588200 OpenAlex: https://openalex.org/W2227393071
    Crossref OpenAlex OpenCitations
  34. Douglas P. (2014). Autism’s “refrigerator mothers”: Identity power and resistance [Comparative Program on Health and Society-Working Paper Series]. University of Toronto.
    Type: Autre
    Crossref
  35. Annaleena Holopainen , Daniëlle M. J. de Veld , Elske Hoddenbach , Sander Begeer (2019). Does Theory of Mind Training Enhance Empathy in Autism? Journal of Autism and Developmental Disorders, 49(10), 3965-3972. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3671-1 OpenAlex: https://openalex.org/W2887106818
    Crossref OpenAlex OpenCitations
  37. Frith U (2003). Autism: Explaining the enigma . Autism: Explaining the Enigma,.
    Type: Autre
    Crossref
  38. Hayley Morgan (2018). A mismatch of salience: explorations of the nature of autism from theory to practice . Disability & Society, 33(10), 1681-1683. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2018.1541617 OpenAlex: https://openalex.org/W2906494691
    OpenAlex
  39. Ben Baumberg Geiger (2021). Disabled but not deserving? The perceived deservingness of disability welfare benefit claimants . Journal of European Social Policy, 31(3), 337-351. SAGE Publications.
    Type: Article DOI: 10.1177/0958928721996652 OpenAlex: https://openalex.org/W3085218427
    Crossref OpenAlex OpenCitations
  40. Young-Hui Yang (2019). Review of Early Intervention for Children with Autism Spectrum Disorder: Focused on Randomized Controlled Trials . Journal of the Korean Academy of Child and Adolescent Psychiatry, 30(4), 136-144. Korean Academy of Child and Adolescent Psychiatry.
    Type: Article DOI: 10.5765/jkacap.180035 OpenAlex: https://openalex.org/W2978335169
    Crossref OpenAlex OpenCitations
  41. GOV. UK. (2023). Suicide prevention strategy: Action plan. https://gov.uk
    Type: Autre
    Crossref
  42. Kana Grace , Anna Remington , Brynmor Lloyd‐Evans , Jade Davies , Laura Crane (2022). Loneliness in autistic adults: A systematic review . Autism, 26(8), 2117-2135. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221077721 OpenAlex: https://openalex.org/W4220790656
    Crossref OpenAlex OpenCitations
  43. Hemingway A. (2012). Humanising nursing care: A theoretical model . Nursing Times, 108(40), 26.
    Type: Autre
    Crossref
  44. Freya Rumball , Lucinda Brook , Francesca Happé , Anke Karl (2021). Heightened risk of posttraumatic stress disorder in adults with autism spectrum disorder: The role of cumulative trauma and memory deficits . Research in Developmental Disabilities, 110, 103848. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2020.103848 OpenAlex: https://openalex.org/W3118693932
    Crossref OpenAlex OpenCitations
  45. O. Ivar Lovaas (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3-9. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0022-006x.55.1.3 OpenAlex: https://openalex.org/W4234561288
    Crossref OpenAlex OpenCitations
  46. Damian Milton * , Emine Gürbüz , Beatriz López (2022). The ‘double empathy problem’: Ten years on . Autism, 26(8), 1901-1903. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221129123 OpenAlex: https://openalex.org/W4306860573
    Crossref OpenAlex OpenCitations
  47. Léo Kanner (1943). Autistic disturbances of affective contact . Nervous Child, 2(3), 217.
    Type: Article OpenAlex: https://openalex.org/W2255119171
    Crossref
  48. LaCroix J. M. (2015). Instrumentality and the denial of personhood: The social psychology of objectifying others . Revue Internationale de Psychologie Sociale, 28(1), 183.
    Type: Autre
    Crossref
  49. Lietaer G. (2001). Rogers' therapeutic conditions: Evolution, theory and practice—Vol. 1. Congruence . Rogers' therapeutic conditions: Evolution, theory and practice—Vol. 1. Congruence, 36.
    Type: Autre
    Crossref
  52. Milton D. E. M. (2017). A mismatch of salience: Explorations of the nature of autism from theory to practice . A mismatch of salience: Explorations of the nature of autism from theory to practice.
    Type: Autre
    Crossref
  53. Daniel Glenn (2022). Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities . World Futures, 78(5), 339-341. Informa UK Limited.
    Type: Article DOI: 10.1080/02604027.2022.2094194 OpenAlex: https://openalex.org/W4285727398
    OpenAlex
  54. Miserandino C. (2003). But you don’t look sick? Support for those with invisible illness of chronic illness: The spoon theory. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
    Type: Autre
    Crossref
  55. NHS England (2022). NHS England. (2022). Autistic people’s healthcare information strategy for England [National Strategy for Autistic Children, young people and adults (national autism strategy)]. Autistic people’s healthcare information strategy for England.
    Type: Autre
    Crossref
  56. PBS Clinical Competence Framework (2015). PBS Clinical Competence Framework. (2015). The PBS Academy UK—UK Positive Behavioural Support (PBS) Competence Framework. The PBS Academy UK—UK Positive Behavioural Support (PBS) Competence Framework.
    Type: Autre
    Crossref
  57. Pearson A (2023). Autistic masking: Understanding identity management and the role of stigma . Autistic Masking: Understanding Identity Management and the Role of Stigma.
    Type: Autre
    Crossref
  58. Quinn A. (2018). Unbroken: Learning to Live beyond Diagnosis . Unbroken: Learning to live beyond diagnosis.
    Type: Autre
    Crossref
  59. Rimland B. (1964). Infantile autism . Infantile autism.
    Type: Autre
    Crossref
  60. Walker, Nick (2021). Neuroqueer heresies notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities . Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities.
    Type: Autre OpenAlex: https://openalex.org/W7011697317
    Crossref