L'auto-représentation autistique et le mouvement pour la neurodiversité: implications pour la recherche et la pratique de l'intervention précoce en autisme

Ajouté le 03/11/2024

Type de contenu

Article de revue du type Perspective ( ; anglais)

Autistic self-advocacy and the neurodiversity movement: implications for autism early intervention research and practice publié dans la revue "Frontiers in psychology" vol.12, 7 pages , doi: 10.3389/fpsyg.2021.635690

*Deux co-auteur·rices se sont publiquement identifié·es comme autistess. [En savoir plus sur cette mention]

=> Accès libre et gratuit

Résumé/Présentation

La croissance de l'auto-représentation [self-advocacy] autistique et du mouvement pour la neurodiversité a suscité de nouveaux débats éthiques, théoriques et idéologiques au sein de la théorie, de la recherche et de la pratique sur l'autisme. Ces débats ont eu un impact réel dans certains domaines de la recherche sur l'autisme, mais leur influence est moins évidente dans la recherche sur les interventions précoces. Dans cet article, nous soutenons que tous les acteurs de l'intervention sur l'autisme doivent comprendre et s'engager activement avec les points de vue des personnes autistes ainsi qu'avec la neurodiversité en tant que concept et mouvement. Ce faisant, les chercheurs et praticiens de l'intervention sont tenus de s'éloigner d'un programme normatif et de prêter attention à l'adéquation environnementale, aux trajectoires de développement autistiques, aux moteurs et expériences internes, ainsi qu'aux objectifs d'intervention priorisés par les personnes autistes. Les chercheurs en intervention sur l'autisme doivent répondre à ces débats en reformulant l'efficacité, en développant des outils pour mesurer les résultats priorisés par les personnes autistes, et en formant des partenariats avec elles. Il est urgent d’augmenter la réflexion et l’articulation sur la manière dont les pratiques d’intervention s’alignent avec un cadre de neurodiversité et d’accorder une plus grande importance dans les programmes d’intervention aux processus naturels de développement, aux stratégies d’adaptation, à l’autonomie et au bien-être.

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.


  • Autistica (2015). "Your Questions: Shaping Future Autism Research". (Source)

  • C. Aldred, Jon. Green, C. Adams (2004). "A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness". Child Psychology Psychiatry, 45(8). doi:10.1111/j.1469-7610.2004.00338.x

  • J. Bascom* (2012). "Quiet hands". In "Loud Hands: Autistic People, Speaking" (pp. 177–182). The Autistic Press. (Source)

  • H. Belcher, R. Ford, S. Morein, S. Stagg (2019). "Social Skills Predict Diagnosis of Autism in Women" [Poster presentation]. British Psychological Society Division of Clinical Psychology Conference, Manchester, UK. (Source)

  • P. Benson, D. Daley, K. Karlof, D. Robison (2011). "Assessing expressed emotion in mothers of children with autism". Autism, 15(1). doi:10.1177/1362361309352777

  • K. L. Buckle* (2013). "Is reducing disability always good?" [Unpublished Master’s Thesis]. University of Manchester, UK.

  • S. Bury, R. Jellett, J. Spoor, D. Hedley (2023). "'It Defines Who I Am' or 'It's Something I Have': What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?". J Autism Dev Disord, 53(2). doi:10.1007/s10803-020-04425-3

  • S. Bölte, E. de Schipper, J. Robison*, V. C.N. Wong, M. Selb, N. Singhal, P. de Vries, L. Zwaigenbaum (2014). "Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder". Autism Research, 7(1). doi:10.1002/aur.1335

  • S. Cassidy, A. Robertson, E. Townsend, R. O’Connor, J. Rodgers (2020). "Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism". J Autism Dev Disord, 50(10). doi:10.1007/s10803-020-04643-9

  • M. Dekker* (2017). "Pick a side: the dilemma of being an autistic parent" [Presentation]. Autscape, Northampton. (Source)

  • M. Dekker* (2020). "From exclusion to acceptance: independent living on the Autistic Spectrum". In "Autistic Community and the Neurodiversity Movement: Stories From the Frontline", ed. S. Kapp (pp. 41–49). Singapore: Springer Nature. doi:10.1007/978-981-13-8437-0_3

  • K. Lorraine Dykshoorn, D. Cormier (2019). "Autism Spectrum Disorder Research: Time for Positive Psychology". Autism Open Access, 09(01). doi:10.35248/2165-7890.19.9.235

  • L. French, E. M.M. Kennedy (2018). "Annual Research Review: Early intervention for infants and young children with, or at‐risk of, autism spectrum disorder: a systematic review". Child Psychology Psychiatry, 59(4). doi:10.1111/jcpp.12828

  • K. Gordon, M. Murin, O. Baykaner, L. Roughan, V. Livermore‐Hardy, D. Skuse, W. Mandy (2015). "A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high‐functioning autism spectrum disorder". Child Psychology Psychiatry, 56(4). doi:10.1111/jcpp.12304

  • Jon. Green, C. Aldred, T. Charman, A. Le Couteur, R. Emsley, V. Grahame, P. Howlin, N. Humphrey, K. Leadbitter, H. McConachie, J. Parr, A. Pickles, V. Slonims, C. Taylor (2018). "Paediatric Autism Communication Therapy-Generalised (PACT-G) against treatment as usual for reducing symptom severity in young children with autism spectrum disorder: study protocol for a randomised controlled trial". Trials, 19(1). doi:10.1186/s13063-018-2881-3

  • Jon. Green, T. Charman, H. McConachie, C. Aldred, V. Slonims, P. Howlin, A. Le Couteur, K. Leadbitter, K. Hudry, S. Byford, B. Barrett, K. Temple, W. Macdonald, A. Pickles (2010). "Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial". The Lancet, 375(9732). doi:10.1016/s0140-6736(10)60587-9

  • R. Grove, R. Hoekstra, M. Wierda, S. Begeer (2018). "Special interests and subjective wellbeing in autistic adults". Autism Research, 11(5). doi:10.1002/aur.1931

  • F. Happé, U. Frith (2020). "Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research". Child Psychology Psychiatry, 61(3). doi:10.1111/jcpp.13176

  • J. M. Hughes (2016). "Increasing neurodiversity in disability and social justice advocacy groups" [White paper]. Autistic Self Advocacy Network. (Source)

  • J. Hughes (2021). "Does the heterogeneity of autism undermine the neurodiversity paradigm?". Bioethics, 35(1). doi:10.1111/bioe.12780

  • V. Iemmi, M. Knapp, I. Ragan (2017). "The Autism Dividend: Reaping the Rewards of Better Investment". Vancouver: Michael Smith Foundation for Health Research.

  • P. Jaarsma, S. Welin (2012). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement". Health Care Anal, 20(1). doi:10.1007/s10728-011-0169-9

  • James Lind Alliance (2016). "Priority Setting Partnerships: Autism". (Source)

  • B. N. Kaufman (1976). "Son-rise". New York, NY: HarperCollins.

  • P. Kirkham (2017). "'The line between intervention and abuse' – autism and applied behaviour analysis". History of the Human Sciences, 30(2). doi:10.1177/0952695117702571

  • J. Kras (2016). "The 'Ransom Notes' Affair: When the Neurodiversity Movement Came of Age". DSQ, 30(1). doi:10.18061/dsq.v30i1.1065

  • G. Yu Hin Lam, E. Holden, M. Fitzpatrick, L. Raffaele Mendez, K. Berkman (2020). "'Different but connected': Participatory action research using Photovoice to explore well-being in autistic young adults". Autism, 24(5). doi:10.1177/1362361319898961

  • K. Leadbitter, C. Aldred, H. McConachie, A. Le Couteur, D. Kapadia, T. Charman, W. Macdonald, E. Salomone, R. Emsley, Jon. Green (2018). "The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention". J Autism Dev Disord, 48(4). doi:10.1007/s10803-017-3350-7

  • A. Lodder, C. Papadopoulos, G. Randhawa (2020). "SOLACE: A Psychosocial Stigma Protection Intervention to Improve the Mental Health of Parents of Autistic Children—A Feasibility Randomised Controlled Trial". J Autism Dev Disord, 50(12). doi:10.1007/s10803-020-04498-0

  • C. Maurice (1998). "Let me Hear Your Voice: A Family’s Triumph Over Autism". London: Robert Hale.

  • H. McConachie, J. Parr, M. Glod, J. Hanratty, N. Livingstone, I. Oono, S. Robalino, G. Baird, B. Beresford, T. Charman, D. Garland, Jon. Green, P. Gringras, G. Jones, J. Law, A. Le Couteur, G. Macdonald, E. McColl, C. Morris, J. Rodgers, E. Simonoff, C. Terwee, K. Williams* (2015). "Systematic review of tools to measure outcomes for young children with autism spectrum disorder". Health Technology Assessment, 19(41). doi:10.3310/hta19410

  • A. McDonnell, D. Milton* (2014). "Going with the flow: reconsidering ‘repetitive behaviour’ through the concept of ‘flow states’". In "Good Autism Practice: Autism, Happiness and Wellbeing", eds. G. Jones, E. Hurley. Birmingham: BILD.

  • O. McGill, A. Robinson (2021). "'Recalling hidden harms': autistic experiences of childhood applied behavioural analysis (ABA)". AIA, 7(4). doi:10.1108/aia-04-2020-0025

  • R. McKenzie, R. Dallos, J. Stedmon, H. Hancocks, P. Jane Vickery, P. Ewings, A. Barton, T. Vassallo, C. Myhill (2019). "SAFE, a new therapeutic intervention for families of children with autism: study protocol for a feasibility randomised controlled trial". BMJ Open, 9(5). doi:10.1136/bmjopen-2018-025006

  • D. Milton*, L. Moon (2012). "The normalisation agenda and the psycho-emotional disablement of autistic people". Autonomy Crit. J. Interdisc. Autism Stud. (Source)

  • L. Mottron (2017). "Should we change targets and methods of early intervention in autism, in favor of a strengths-based education?". Eur Child Adolesc Psychiatry, 26(7). doi:10.1007/s00787-017-0955-5

  • National Autistic Taskforce (2019). "An independent guide to quality care for autistic people". (Source)

  • S. Neumeier, L. Brown* (2020). "Torture in the Name of Treatment: The Mission to Stop the Shocks in the Age of Deinstitutionalization". Autistic Community and the Neurodiversity Movement. doi:10.1007/978-981-13-8437-0_14

  • M. Oliver (1990). "The Politics of Disablement".

  • C. C. Park (1972). "The Siege: The First Eight Years of an Autistic Child". Boston, MA: Little, Brown and Company.

  • J. Parr, S. Brice, P. Welsh, B. Ingham, A. Le Couteur, G. Evans, A. Monaco, M. Freeston, J. Rodgers (2020). "Treating anxiety in autistic adults: study protocol for the Personalised Anxiety Treatment–Autism (PAT-A©) pilot randomised controlled feasibility trial". Trials, 21(1). doi:10.1186/s13063-020-4161-2

  • A. Pickles, A. Le Couteur, K. Leadbitter, E. Salomone, R. Cole-Fletcher, H. Tobin, I. Gammer, J. Lowry, G. Vamvakas, S. Byford, C. Aldred, V. Slonims, H. McConachie, P. Howlin, J. Parr, T. Charman, Jon. Green (2016). "Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial". The Lancet, 388(10059). doi:10.1016/s0140-6736(16)31229-6

  • A. Pickles, J. McCauley, L. Pepa, M. Huerta, C. Lord (2020). "The adult outcome of children referred for autism: typology and prediction from childhood". Child Psychology Psychiatry, 61(7). doi:10.1111/jcpp.13180

  • U. Provenzani, L. Fusar-Poli, N. Brondino, S. Damiani, M. Vercesi, N. Meyer, M. Rocchetti, P. Politi (2020). "What are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials". Autism, 24(2). doi:10.1177/1362361319854641

  • E. Randell, R. McNamara, S. Delport, M. Busse, R. Hastings, D. Gillespie, R. Williams-Thomas, L. Brookes-Howell, R. Romeo, J. Boadu, A. Ahuja, A. Marie McKigney, M. Knapp, K. Smith, J. Thornton, G. Warren (2019). "Sensory integration therapy versus usual care for sensory processing difficulties in autism spectrum disorder in children: study protocol for a pragmatic randomised controlled trial". Trials, 20(1). doi:10.1186/s13063-019-3205-y

  • P. Burnham Riosa, V. Chan, A. Maughan, V. Stables, C. Albaum, J. Weiss (2017). "Remediating Deficits or Increasing Strengths in Autism Spectrum Disorder Research: a Content Analysis". Adv Neurodev Disord, 1(3). doi:10.1007/s41252-017-0027-3

  • A. Robertson, A. Stanfield, J. Watt, F. Barry, M. Day, M. Cormack, C. Melville (2018). "The experience and impact of anxiety in autistic adults: A thematic analysis". Research in Autism Spectrum Disorders, 46. doi:10.1016/j.rasd.2017.11.006

  • J. Rodgers, R. Herrema, E. Honey, M. Freeston (2018). "Towards a Treatment for Intolerance of Uncertainty for Autistic Adults: A Single Case Experimental Design Study". J Autism Dev Disord, 48(8). doi:10.1007/s10803-018-3550-9

  • R. Rodogno, K. Krause-Jensen, R. Ashcroft (2016). "'Autism and the good life': a new approach to the study of well-being". J Med Ethics, 42(6). doi:10.1136/medethics-2016-103595

  • K. Runswick-Cole (2014). "'Us' and 'them': the limits and possibilities of a 'politics of neurodiversity' in neoliberal times". Disability & Society, 29(7). doi:10.1080/09687599.2014.910107

  • J. Sinclair (1993). "Don't mourn for us". Autism Network International Newsletter: Our Voice. (Source)

  • J. Singer (1998). "Odd people in: The birth of community amongst people on the Autistic Spectrum: A personal exploration of a new social movement based on neurological diversity" [Doctoral thesis]. Faculty of Humanities and Social Science, University of Technology, Sydney.

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

  • N. Stevenson (2015). "Autism Doesn't Have to be Viewed as a Disability or Disorder" [Blog post]. (Source)

  • UK Parliament (2020). "Autism: Postnote number 612". (Source)

  • R. Wood (2021). "Autism, intense interests and support in school: from wasted efforts to shared understandings". Educational Review, 73(1). doi:10.1080/00131911.2019.1566213

Cette ressource est citée dans 13 ressources référencées sur le site:


 
Synthésiter/Commenter/Traduire cette référence?