Les fondations de l'épanouissement autistique

Ajouté le 12/10/2024

Type de contenu

Article de revue du type Revue de la littérature ( ; anglais)

Elizabeth Pellicano , Melanie Heyworth *
The foundations of autistic flourishing publié dans la revue "Current psychiatry reports", n°25, vol.9, 9 pages , doi: 10.1007/s11920-023-01441-9

*Un.e co-auteur·rice s'est publiquement identifié·e comme autiste. [En savoir plus sur cette mention]

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Résumé/Présentation

But de la Revue: Toutes les personnes — y compris les personnes autistes — méritent de mener des vies épanouies. Mais à quoi ressemble une vie épanouie pour les personnes autistes ? Nous suggérons que les biais cachés, les erreurs méthodologiques et les hypothèses clés de la science de l'autisme ont obscurci les réponses à cette question. Ici, nous cherchons à initier une discussion plus large sur ce que pourraient être les bases d'une bonne vie pour les personnes autistes et comment encadrer cette discussion.
Résultats: Récents Nous identifions cinq façons dont la science de l'autisme peut nous aider à assurer ces bases, notamment en (1) donnant une place centrale au bien-être des personnes autistes dans la recherche, (2) amplifiant l'autonomie des personnes autistes, (3) portant plus d'attention aux expériences quotidiennes, (4) reconnaissant le contexte, et (5) travaillant en partenariat avec les personnes autistes, leurs familles et alliés pour s'assurer qu'ils sont au cœur de la prise de décision en matière de recherche.
Résumé: Une telle approche orienterait la recherche sur l'autisme pour aider à façonner de bonnes vies pour les personnes autistes.
 

Pour information:

(1) Les références en bleu sont des ressources référencées sur notre site;

(2) Les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la liste des ressources publiées et partagées sur le site;

(3) Les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]

  • D. Allen, E. Frankel, W. Lim, D. Siddarth, J. Simons, E. Weyl (2023). "Ethics of decentralized social technologies". Gettingplurality.org. (Source)

  • A. Psychiatric Association (2013). "Diagnostic and Statistical Manual of Mental Disorders".

  • S. Baron-Cohen, A. Leslie, U. Frith (1985). "Does the autistic child have a 'theory of mind' ?". Cognition, 21(1). doi:10.1016/0010-0277(85)90022-8

  • E. Billstedt, C. Gillberg, C. Gillberg (2005). "Autism after Adolescence: Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood". J Autism Dev Disord, 35(3). doi:10.1007/s10803-005-3302-5

  • L. Bishop-Fitzpatrick, J. Hong, L. Smith, R. Makuch, J. Greenberg, M. Mailick (2016). "Characterizing Objective Quality of Life and Normative Outcomes in Adults with Autism Spectrum Disorder: An Exploratory Latent Class Analysis". J Autism Dev Disord, 46(8). doi:10.1007/s10803-016-2816-3

  • M. Botha* (2021). "Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production". Front. Psychol., 12. doi:10.3389/fpsyg.2021.727542

  • L. Brown* (2012). "Privilege and the myth of independence". Autistichoya.com. (Source)

  • P. BURGESS, N. ALDERMAN, C. FORBES, A. COSTELLO, L. M-A.COATES, D. DAWSON, N. ANDERSON, S. GILBERT, I. DUMONTHEIL, S. CHANNON (2006). "The case for the development and use of 'ecologically valid' measures of executive function in experimental and clinical neuropsychology". J Int Neuropsychol Soc, 12(2). doi:10.1017/s1355617706060310

  • S. Bölte (2023). "A more holistic approach to autism using the International Classification of Functioning: The why, what, and how of functioning". Autism, 27(1). doi:10.1177/13623613221136444

  • S. Bölte, W. Lawson*, P. Marschik, S. Girdler (2021). "Reconciling the seemingly irreconcilable: The WHO's ICF system integrates biological and psychosocial environmental determinants of autism and ADHD". BioEssays, 43(9). doi:10.1002/bies.202000254

  • C. Chevallier, G. Kohls, V. Troiani, E. Brodkin, R. Schultz (2012). "The social motivation theory of autism". Trends in Cognitive Sciences, 16(4). doi:10.1016/j.tics.2012.02.007

  • S. Cribb, L. Kenny, E. Pellicano (2019). "'I definitely feel more in control of my life': The perspectives of young autistic people and their parents on emerging adulthood". Autism, 23(7). doi:10.1177/1362361319830029

  • R. Davis, C. Crompton (2021). "What Do New Findings About Social Interaction in Autistic Adults Mean for Neurodevelopmental Research?". Perspect Psychol Sci, 16(3). doi:10.1177/1745691620958010

  • M. Dawson*, L. Mottron (2011). "Do autistics have cognitive strengths? Should ASC be defined as disorders?" In: Bölte S, Hallmayer J, editors. Autism spectrum conditions: FAQs on autism, Asperger syndrome, and atypical autism answered by international experts. Boston: Hogrefe. p. 32–9.

  • G. Dawson (2008). "Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder". Dev Psychopathol, 20(3). doi:10.1017/s0954579408000370

  • H. De Jaegher (2023). "Seeing and inviting participation in autistic interactions". Transcult Psychiatry, 60(5). doi:10.1177/13634615211009627

  • E. Demetriou, A. Lampit, D. Quintana, S. Naismith, Y. Song, J. Pye, I. Hickie, A. Guastella (2018). "Autism spectrum disorders: a meta-analysis of executive function". Mol Psychiatry, 23(5). doi:10.1038/mp.2017.75

  • L. Eaves, H. Ho (2008). "Young Adult Outcome of Autism Spectrum Disorders". J Autism Dev Disord, 38(4). doi:10.1007/s10803-007-0441-x

  • G. Engel (1977). "The Need for a New Medical Model: A Challenge for Biomedicine". Science, 196(4286). doi:10.1126/science.847460

  • M. Farley, W. McMahon, E. Fombonne, W. Jenson, J. Miller, M. Gardner, H. Block, C. Pingree, E. Ritvo, R. Arielle Ritvo, H. Coon (2009). "Twenty‐year outcome for individuals with autism and average or near‐average cognitive abilities". Autism Research, 2(2). doi:10.1002/aur.69

  • S. Fletcher-Watson, F. McConnell, E. Manola, H. McConachie (2014). "Interventions based on the Theory of Mind cognitive model for autism spectrum disorder (ASD)". Cochrane Database of Systematic Reviews. doi:10.1002/14651858.cd008785.pub2

  • U. Frith, F. Happé (1999). "Theory of Mind and Self‐Consciousness: What Is It Like to Be Autistic?". Mind & Language, 14(1). doi:10.1111/1468-0017.00100

  • J. Fuller (2017). "The new medical model: a renewed challenge for biomedicine". CMAJ, 189(17). doi:10.1503/cmaj.160627

  • P. Fusar-Poli, G. Salazar de Pablo, A. De Micheli, D. Nieman, C. Correll, L. Vedel Kessing, A. Pfennig, A. Bechdolf, S. Borgwardt, C. Arango, T. van Amelsvoort (2020). "What is good mental health? A scoping review". European Neuropsychopharmacology, 31. doi:10.1016/j.euroneuro.2019.12.105

  • M. Ann Gernsbacher (2017). "Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma". Child Psychology Psychiatry, 58(7). doi:10.1111/jcpp.12706

  • B. Gough, A. Madill (2012). "Subjectivity in psychological science: From problem to prospect.". Psychological Methods, 17(3). doi:10.1037/a0029313

  • F. Happé, A. Ronald, R. Plomin (2006). "Time to give up on a single explanation for autism". Nat Neurosci, 9(10). doi:10.1038/nn1770

  • N. Henninger, J. Lounds Taylor (2013). "Outcomes in adults with autism spectrum disorders: a historical perspective". Autism, 17(1). doi:10.1177/1362361312441266

  • A. Hogan (2019). "Moving Away from the 'Medical Model': The Development and Revision of the World Health Organization's Classification of Disability". Bulletin of the History of Medicine, 93(2). doi:10.1353/bhm.2019.0028

  • R. Imrie (2004). "Demystifying disability: a review of the International Classification of Functioning, Disability and Health". Sociology Health & Illness, 26(3). doi:10.1111/j.1467-9566.2004.00391.x

  • S. Jacob, J. Wolff, M. Steinbach, C. Doyle, V. Kumar, J. Elison (2019). "Neurodevelopmental heterogeneity and computational approaches for understanding autism". Transl Psychiatry, 9(1). doi:10.1038/s41398-019-0390-0

  • V. Jaswal, N. Akhtar (2019). "Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism". Behav Brain Sci, 42. doi:10.1017/s0140525x18001826

  • S. Kapp* (2023). "Profound Concerns about 'Profound Autism': Dangers of Severity Scales and Functioning Labels for Support Needs". Education Sciences, 13(2). doi:10.3390/educsci13020106

  • L. Kenny, A. Remington, E. Pellicano (2024). "Everyday executive function issues from the perspectives of autistic adolescents and their parents: theoretical and empirical implications". Autism; 28(9). doi:10.1177/13623613231224093

  • L. Kenny, C. Hattersley, B. Molins, C. Buckley, C. Povey, E. Pellicano (2016). "Which terms should be used to describe autism? Perspectives from the UK autism community". Autism, 20(4). doi:10.1177/1362361315588200

  • S. Yoon Kim (2019). "The experiences of adults with autism spectrum disorder: Self-determination and quality of life". Research in Autism Spectrum Disorders, 60. doi:10.1016/j.rasd.2018.12.002

  • A. Kingstone, D. Smilek, J. Eastwood (2008). "Cognitive Ethology: A new approach for studying human cognition". British J of Psychology, 99(3). doi:10.1348/000712607x251243

  • G. Yu Hin Lam, S. Sabnis, M. Migueliz Valcarlos, J. Wolgemuth (2021). "A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults". Autism in Adulthood, 3(1). doi:10.1089/aut.2020.0053

  • W. Lawson* (2015). "Older adults and autism spectrum conditions: an introduction and guide". London, England: Jessica Kingsley.

  • A. Llewellyn, K. Hogan (2000). "The Use and Abuse of Models of Disability". Disability & Society, 15(1). doi:10.1080/09687590025829

  • M. Lombardo, M. Lai, S. Baron-Cohen (2019). "Big data approaches to decomposing heterogeneity across the autism spectrum". Mol Psychiatry, 24(10). doi:10.1038/s41380-018-0321-0

  • C. Lord, T. Charman, A. Havdahl, P. Carbone, E. Anagnostou, B. Boyd, T. Carr, P. de Vries, C. Dissanayake, G. Divan, C. Freitag, M. Gotelli, C. Kasari, M. Knapp, P. Mundy, A. Plank, L. Scahill, C. Servili, P. Shattuck, E. Simonoff, A. Tepper Singer, V. Slonims, P. Wang, M. Celica Ysrraelit, R. Jellett, A. Pickles, J. Cusack*, P. Howlin, P. Szatmari, A. Holbrook, C. Toolan, J. McCauley (2022). "The Lancet Commission on the future of care and clinical research in autism". The Lancet, 399(10321). doi:10.1016/s0140-6736(21)01541-5

  • C. Mazefsky, J. Kao, D. Oswald (2011). "Preliminary evidence suggesting caution in the use of psychiatric self-report measures with adolescents with high-functioning autism spectrum disorders". Research in Autism Spectrum Disorders, 5(1). doi:10.1016/j.rasd.2010.03.006

  • H. McConachie, C. Wilson, D. Mason, D. Garland, J. Parr, A. Rattazzi, J. Rodgers, S. Skevington, M. Uljarevic, I. Magiati (2020). "What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries". Autism in Adulthood, 2(1). doi:10.1089/aut.2019.0008

  • C. Michael (2021). "Is Being Othered a Co-Occurring Condition of Autism?". Autism in Adulthood, 3(2). doi:10.1089/aut.2021.0019

  • J. Mill (1859). "On liberty". Ontario, CA: Batouche Books Limited.

  • P. Mitchell, E. Sheppard, S. Cassidy (2021). "Autism and the double empathy problem: Implications for development and mental health". British J of Dev Psycho, 39(1). doi:10.1111/bjdp.12350

  • J. Mold, G. Blake, L. Becker (1991). "Goal-oriented medical care". Fam Med;23(1):46–51.

  • E. Müller, L. Cannon (2016). "Parent Perspectives on Outcomes and Satisfaction Levels of Young Adults With Autism and Cognitive Impairments". Focus Autism Other Dev Disabl, 31(2). doi:10.1177/1088357614528800

  • n.a. (2021). "When Disability Is Defined by Behavior, Outcome Measures Should Not Promote 'Passing'". AMA Journal of Ethics, 23(7). doi:10.1001/amajethics.2021.569

  • n.a. (n.d). "Article 25 - health. UN.org". (Source)

  • M. Oliver (1986). "Social Policy and Disability: Some Theoretical Issues". Disability, Handicap & Society, 1(1). doi:10.1080/02674648666780021

  • L. Pellicano, A. Dinsmore, T.Charman (213). "Future made together: shaping autism research in the UK". (Source)

  • E. Pellicano, S. Cribb, L. Kenny (2020). "Patterns of Continuity and Change in the Psychosocial Outcomes of Young Autistic People: a Mixed-Methods Study". J Abnorm Child Psychol, 48(2). doi:10.1007/s10802-019-00602-w

  • E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research". Autism Research, 4(4). doi:10.1002/aur.201

  • S. Michael Robertson (2016). "Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges". DSQ, 30(1). doi:10.18061/dsq.v30i1.1069

  • L. Roche, D. Adams, M. Clark (2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25(2). doi:10.1177/1362361320967790

  • L. Ruble, N. Dalrymple (1996). "An Alternative View of Outcome in Autism". Focus Autism Other Dev Disabl, 11(1). doi:10.1177/108835769601100102

  • R. Ryan, V. Huta, E. Deci (2008). "Living well: a self-determination theory perspective on eudaimonia". J Happiness Stud, 9(1). doi:10.1007/s10902-006-9023-4

  • K. Shogren, T. Little, M. Wehmeyer (2017). "Human Agentic Theories and the Development of Self-Determination". Development of Self-Determination Through the Life-Course. doi:10.1007/978-94-024-1042-6_2

  • AppliedBehaviorAnalysisEdu.org. "Why do autistic people have issues with social skills". (n.d). (Source)

  • E. Späth, K. Jongsma (2020). "Autism, autonomy, and authenticity". Med Health Care and Philos, 23(1). doi:10.1007/s11019-019-09909-3

  • R. Stancliffe (2001). "Living with support in the community: Predictors of choice and self‐determination". Ment. Retard. Dev. Disabil. Res. Rev., 7(2). doi:10.1002/mrdd.1013

  • J. Wakefield (2007). "The concept of mental disorder: diagnostic implications of the harmful dysfunction analysis". World Psychiatry;6(3):149–56.

  • V. Warrier, X. Zhang, P. Reed, A. Havdahl, T. Moore, F. Cliquet, C. Leblond, T. Rolland, A. Rosengren, I., A. San Jose Caceres, H. Hayward, D. Crawley, J. Faulkner, J. Sabet, C. Ellis, B. Oakley, E. Loth, T. Charman, D. Murphy, R. Holt, J. Waldman, J. Upadhyay, N. Gunby, M. Lai, G. Renouf, A. Ruigrok, E. Taylor, H. Ziauddeen, J. Deakin, S. Ambrosino di Bruttopilo, S. van Dijk, Y. Rijks, T. Koops, M. Douma, A. Spaan, I. Selten, M. Steffers, A. Ver Loren van Themaat, N. Bast, S. Baumeister, L. O’Dwyer, C. Bours, A. Rausch, D. von Rhein, I. Cornelissen, Y. de Bruin, M. Graauwmans, E. Kostrzewa, E. Cauvet, K. Tammimies, R. Sitnikow, G. Dumas, Y. Kim, T. Bourgeron, I., D. Hougaard, J. Bybjerg-Grauholm, T. Werge, P. Bo Mortensen, O. Mors, M. Nordentoft, I., D. Adhya, A. Alamanza, C. Allison, I. Garvey, T. Parsons, P. Smith, A. Tsompanidis, G. Burton, A. Heazell, L. Gabis, T. Biron-Shental, M. Lancaster, D. Srivastava, J. Mill, D. Rowitch, M. Hurles, D. Geschwind, A. Børglum, E. Robinson, J. Grove, H. Martin, T. Bourgeron, S. Baron-Cohen (2022). "Genetic correlates of phenotypic heterogeneity in autism". Nat Genet, 54(9). doi:10.1038/s41588-022-01072-5

  • M. Wehmeyer (2020). "The Importance of Self-Determination to the Quality of Life of People with Intellectual Disability: A Perspective". IJERPH, 17(19). doi:10.3390/ijerph17197121

  • K. White, T. Flanagan, A. Nadig (2018). "Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder". J Dev Phys Disabil, 30(6). doi:10.1007/s10882-018-9616-y

  • D. Williams (1996). "Autism: an inside-out approach: an innovative look at the 'mechanics' of 'autism' and its developmental 'cousins'". London, England: Jessica Kingsley; 1996.

  • D. Woodly (2022) "On flourishing: political economy and the pursuit of well-being in the polity". In: Allen D, Benkler Y, Downey L, Henderson R, Simons J, editors. A political economy of justice. Chicago, IL: University of Chicago Press. p. 118–39.

  • World Health Organization (WHO). "Constitution of the World Health Organization". Basic Documents, Geneva World Health Organization. 1946.


 
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