Perspectives des personnes autistes sur l'avenir de la recherche clinique sur l'autisme

Ajouté le 19/09/2024

Type de contenu

Article de revue du type Edito ( ; anglais)

Heta Pukki*, Jorn Bettin*, Avery Grey Outlaw*, Joshua Hennessy*, Kabie Brook*, Martijn Dekker*, Mary Doherty*, Sebastian Shaw*, Jo Bervoets*, Silke Rudolph*, Thibault Corneloup*, Kylieanne Derwent, Onemoo Lee*, Yadira Garcia Rojas*, Wenn Lawson*, Monica Vidal Gutierrez*, Kosjenka Petek*, Myria Tsiakkirou*, Annikka Suoninen*, Jo Minchin*, Rainer Döhle*, Silke Lipinski*, Heini Natri*, Emma Reardon*, Giovanna Villarreal Estrada, Ovidiu Platon*, Nick Chown*, Ayaya Satsuki*, Damian Milton*, Nick Walker*, Ondrej Roldan, Bárbara Herrán*, Citlali Limón Cañedo*, Sue McCowan*, Mona Johnson*, Eleanor Turner, Jessy Lammers, wn-ho Yoon* , Autistic perspectives on the future of clinical autism research publié dans la revue "Autism in adulthood", n°4, vol.2, 9 pages , doi:10.1089/aut.2022.0017

*Trente-trois co-auteur·rices sont autistes. [En savoir plus sur cette mention]

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[Premières lignes de l'édito]
La Commission du Lancet sur l'Avenir des Soins et de la Recherche Clinique en Autisme a récemment publié ses recommandations sur les actions à mener au cours des 5 prochaines années pour répondre aux besoins actuels des personnes autistes et de leurs familles. Bien que la Commission inclut de nombreux cliniciens et chercheurs de renom du monde entier, ainsi que quelques défenseurs autistes et parents de personnes autistes, de nombreuses expressions d’insatisfaction ont émergé au sein des personnes autistes et des communautés autistes concernant ces recommandations.
Nous, le Groupe de Travail Autiste Mondial sur la Recherche en Autisme, sommes un groupe de professionnels autistes et de représentants d'organisations dirigées par et pour des personnes autistes. Nous sommes des cliniciens, des thérapeutes, des éducateurs et des chercheurs autistes, des parents et des membres de la famille de personnes autistes de tous âges et ayant divers besoins de soutien, ainsi que des individus avec des besoins de soutien élevés. Parmi nous, se trouvent également des personnes autistes racisées, des personnes autistes du Sud Global et d'Asie, des femmes autistes, et des personnes autistes appartenant à des minorités de genre.
Bien que l'objectif de la Commission soit de rassembler divers acteurs, la représentation au sein de celle-ci a été limitée à ces égards. Nous espérons apporter davantage de voix à ce débat. Nous avons déjà rédigé une lettre ouverte à la Commission pour attirer l’attention sur nos principales préoccupations. Dans cet éditorial, nous offrons une discussion plus détaillée du rapport de la Commission ainsi que nos propres recommandations pour les futures orientations de la recherche et des soins en autisme.

[First lines of the Edito]
The Lancet Commission on the Future of Care and Clinical Research in Autism recently published their recommendations for what should be done in the next 5 years to address the current needs of autistic individuals and families.1 Although the Commission includes many prominent clinicians and researchers from around the world, as well as some autistic advocates and parents of autistic people, there have been widespread expressions of dissatisfaction among autistic people and communities regarding these recommendations.
We, the Global Autistic Task Force on Autism Research are a group of autistic professionals and representatives of organizations run by and for autistic people. We are autistic clinicians, therapists, educators and researchers, parents, and family members of autistic people of all ages and with all types of support needs, as well as individuals with high support needs. Among us are also autistic people of color, autistic people from the Global South and Asia, autistic women, and autistic people belonging to gender minorities.
Despite aiming at bringing together different stakeholders, representation within the Lancet Commission was limited in these respects. We hope to bring more voices to the discourse. We previously wrote an open letter to the Commission to draw attention to our main concerns.2 In this editorial, we offer a more detailed discussion of the Commission's report, as well as our own recommendations for future directions in autism research and care.

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 listes 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]

  • Adventor (2022). "Naše c ́ıle [Our goals]". (Source)

  • D. Adams, K. Young (2021). "A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in Individuals on the Autism Spectrum". Rev J Autism Dev Disord, 8(10), doi:10.1007/s40489-020-00237-5

  • E. Anagnostou, L. Soorya, J. Brian, et al. (2014). "Intranasal oxytocin in the treatment of autism spectrum disorders: A review of literature and early safety and efficacy data in youth". Brain Res, 1580, doi:10.1016/j.brainres.2013.11.046

  • B.K. Ashinoff, A. Abu-Akel (2021). "Hyperfocus: The forgotten frontier of attention". Psychol Res, 85(1), doi:10.1007/s00426-019-01245-8

  • K. Bauer, K.L. Morin, T.E. Renz, S. Zungu (2022). "Autism assessment in low- and middle-income countries: Feasibility and usability of Western Tools". Focus Autism Other Dev Disabil, doi:10.1177/10883576211073691

  • J. Bettin* (2021). "Nurturing good company, one trusted relationship at a time". (Source)

  • K. Van den Bosch, D. Weve (2022). "Report of the Autism Research Agenda: Mapping research needs of three interest groups the field of autism: adults, parents and legal representatives [in Dutch]". Project Onderzoeksagenda Autisme. (Source)

  • S.A. Cassidy, A. Robertson, E. Townsend, et al. (2020). "Advancing our understanding of self-harm, suicidal thoughts and behaviours in autism". J Autism Dev Disord, 50(10), doi:10.1007/s10803-020-04423-5

  • R. Chapman* (2020). "Defining neurodiversity for research and practice". In: Bertilsdotter-Rosqvist H, Stenning A, Chown N, eds. Neurodiversity Studies: A New Critical Paradigm. Routledge.

  • M. Chapple, P. Davis, J. Billington, J.A. Myrick, C. Ruddock, R. Corcoran (2021). "Overcoming the double empathy problem within pairs of autistic and non-autistic adults through the contemplation of serious literature". Front Psychol, 12, doi:10.3389/fpsyg.2021.708375

  • N. Chown*, J. Robinson, L. Beardon, et al. (2017). "Improving research about us, with us: A draft framework for inclusive autism research". Disabil Soc, 32(5), doi:10.1080/09687599.2017.1320273

  • T. Corneloup* (2021). "L’urgence de la désinstitutionnalisation: L’évaluation de la France sur la CDPH/The urgency for deinstitutionalization: CRPD and the evaluation of France". Presentation at the Autistic Advocacy Across Europe online conference. (Source)

  • Australian Autism Research Council (2022). "Research report on focus groups to identify research questions for community informed priority areas". (Source)

  • Australian Autism Research Council (2019). "Draft Research Priorities for Consultation". (Source)

  • A4A and the Campaign Against Phony Autism Cures (2021). "Canadian Govt Consulting Document: Combating Phony Autism Treatments". (Source)

  • L. Smith DaWalt, J. Hong, J.S. Greenberg, M.R. Mailick (2019). "Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period". Autism, 23(7), doi:10.1177/1362361319835654

  • United States Department of Defense (2020). "Report to the Committees on Armed Services of the Senate and House of Representatives: The Department of Defense Comprehensive Autism Care Demonstration Annual Report". (Source)

  • T. Degener (2016). "A human rights model of disability". In: Blanck P, Flynn E, eds. Routledge Handbook of Disability Law and Human Rights, Routledge.

  • M. Dekker* (2020). "From exclusion to acceptance: Independent living on the autistic spectrum". In: Kapp S, ed. Autistic Community and the Neurodiversity Movement: Stories from the Frontline, Springer Nature Singapore.

  • P. Delion, J. Labreuche, D. Deplanque, et al. (2018). "Therapeutic body wraps (TBW) for treatment of severe injurious behaviour in children with autism spectrum disorder (ASD): A 3-month randomized controlled feasibility study". PLOS ONE, 13(6), doi:10.1371/journal.pone.0198726

  • M. Doherty* (2021). "Spectrum 10K and Cognitive Dissonance in Autism Research". www.thinkingautismguide.com/2021/10/spectrum-10k-and-cognitive-dissonance.html

  • S. Fletcher-Watson (2019). "Merging psychological theory with a neurodiversity framework for better autism interventions". The 31st European Academy of Childhood Disability (EACD) Conference. (Source)

  • R. Fulton, K. Richardson, R.A. Jones, E. Reardon* (2020). "Sensory Trauma—Autism Sensory Difference and the Daily Experience of Fear". Autism Wellbeing Press.

  • K. Gillespie-Lynch, P.J. Brooks, F. Someki, et al. (2015). "Changing college students’ conceptions of autism: An online training to increase knowledge and decrease stigma". J Autism Dev Disord, 45(8), doi:10.1007/s10803-015-2466-6

  • S.B. Helverschou, T.L. Bakken, H. Berge (2021). "Preliminary findings from a Nationwide, Multicenter Mental Health Service for Adults and older adolescents with Autism Spectrum Disorder and ID". J Policy Pract Intellect Disabil, 18(2), doi:10.1111/jppi.12378

  • I. Hipolito, D. Hutto, N. Chown* (2020). "Understanding autistic individuals: Cognitive diversity not theoretical deficit". In: Bertilsdotter-Rosqvist H, Stenning A, Chown N, eds. Neurodiversity Studies: A New Critical Paradigm. Routledge.

  • T. Hirvikoski, E. Mittendorfer-Rutz, M. Boman, H. Larsson, P. Lichtenstein, S. Bölte (2016). "Premature mortality in autism spectrum disorder". Br J Psychiatry, 208(3), doi:10.1192/bjp.bp.114.160192

  • R. Holden, J. Mueller, J. McGowan, et al. (2020). "Investigating bullying as a predictor of suicidality in a clinical sample of adolescents with Autism Spectrum Disorder". Autism Res, 13(6), doi:10.1002/aur.2263

  • C. Holyfield, K.D. Drager, J.M. Kremkow, J. Light (2017). "Systematic review of AAC intervention research for adolescents and adults with autism spectrum disorder". Augment Altern Commun, 33(4), doi:10.1080/07434618.2017.1371892

  • K. Horvath, G. Stefanatos, K.N. Sokolski, R. Wachtel, L. Nabors, J.T. Tildon (1998). "Improved social and language skills after secretin administration in patients with autistic spectrum disorders". J Assoc Acad Minor Phys, 9(1).

  • L. Hull, L. Levy, M.C. Lai, et al. (2021). "Is social camouflaging associated with anxiety and depression in autistic adults?". Mol Autism, 12, doi:10.1186/s13229-021-00421-1

  • J. Hwang, P. Srasuebkul, K.-R. Foley, S. Arnold, J. Trollor (2019). "Mortality and cause of death of Australians on the autism spectrum". Autism Res, 12(5), doi:10.1002/aur.2086

  • C.T. Keating (2021). "Participatory autism research: How consultation benefits everyone". Front Psychol, 12, doi:10.3389/fpsyg.2021.713982

  • A.V. Kirby, A.V. Bakian, Y. Zhang, D.A. Bilder, B.R. Keeshin, H. Coon (2019). "A 20-year study of suicide death in a statewide autism population". Autism Res, 12(4), doi:10.1002/aur.2076

  • S. Kumagaya (2017). "Informational support design aiming for the accommodation of individuals with autism spectrum disorders based on the social model of disability". J Natl Inst Public Health, 66(5), 532–544.

  • E.V. Larsson, S. Wright (2011). "O. Ivar Lovaas (1927–2010)". Behav Anal, 34(1), doi:10.1007/BF03392262

  • S. Lipinski*, E.S. Blanke, U. Sünkel, et al. (2019). "Präferenzen erwachsener Autist_innen bei Teilnahme an wissenschaftlichen Studien". 12. Wissenschaftliche Tagung Autismus-Spektrum (WTAS). Berlin: Wissenschaftliche Gesellschaft Autismus-Spektrum (WGAS) e.V., 131 p.

  • S. Lipinski*, K. Bögel, E. Blanke, U. Sünkel, I. Dziobek (2021). "A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum". Autism, doi:10.1177/13623613211057973

  • S. Lipinski*, E.S. Blanke, U. Sünkel, I. Dziobek (2019). "Outpatient psychotherapy for adults with high-functioning autism spectrum condition: Utilization, treatment satisfaction, and preferred modifications". J Autism Dev Disord, 49(3), doi:10.1007/s10803-018-3799-2

  • S. Lipinski*, A. Suoninen*, D. Weve (2021). "EUCAP survey data as a means to support advocacy". Presentation at the Autistic Advocacy Across Europe Online Conference. (Source)

  • A. Manzini, E.J.H. Jones, T. Charman, M. Elsabbagh, M.H. Johnson*, I. Singh (2021). "Ethical dimensions of translational developmental neuroscience research in autism". J Child Psychol Psychiatry, 62(11), doi:10.1111/jcpp.13374

  • A. McDonnell, M. McCreadie, R. Mills, R. Deveau, R. Anker, J. Hayden (2015). "The role of physiological arousal in the management of challenging behaviours in individuals with autistic spectrum disorders". Res Dev Disabil, 36C, doi:10.1016/j.ridd.2014.10.048

  • J. Mercer (2014). "International concerns about holding therapy". Res Soc Work Pract, 24(2), doi:10.1177/1049731513499415

  • D. Milton*, S. Ridout, M. Kourti, G. Loomes, N. Martin (2019). "A critical reflection on the development of the Participatory Autism Research Collective (PARC)". Tizard Learn Disabil Rev, 24(2), doi:10.1108/TLDR-02-2019-0006

  • R.L. Moseley, J.M. Turner-Cobb, C.M. Spahr, G.S. Shields, G.M. Slavich (2021). "Lifetime and perceived stress, social support, loneliness, and health in autistic adults". Health Psychol, 4(8), doi:10.1037/hea0001042

  • S.E. Mouridsen, H. Brønnum-Hansen, B. Rich, T. Isager (2008). "Mortality and causes of death in autism spectrum disorders: An update". Autism, 12(4), doi:10.1177/1362361308091653

  • Autistic Self Advocacy Network (2020). "ASAN leads letter on supporters in hospitals". (Source)

  • Autistic Self-Advocacy Network (2022). "For whose benefit? Evidence, ethics and effectiveness of autism interventions". (Source)

  • C. Nicolaidis, D. Raymaker*, K. McDonald, et al. (2011). "Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates". Prog Community Health Partnersh, 5(2), doi:10.1353/cpr.2011.0020

  • A4A Ontario (2022). "Guides & Policy Papers". (Source)

  • A4A Ontario (2020). "Letter to Public Health Ontario: Create uniform protocols for disabled patients’ communication access". (Source)

  • L. Pellicano, A. Dinsmore, T. Charman (2020). "A Future Made Together: Shaping Autism Research in the UK". Centre for Research in Autism and Education (CRAE), Institute of Education, University of London.

  • E. Pellicano, L. Crane, K. Gaudion, Shaping Autism Research Team (2017). "Participatory Autism Research: A Starter Pack". UCL Institute of Education.

  • E. Perry, W. Mandy, L. Hull, et al. (2022). "Understanding camouflaging as a response to autism-related stigma: A social identity theory approach". J Autism Dev Disord, 52(2), doi:10.1007/s10803-021-05004-5

  • J. Price (2020). "Cell therapy approaches to autism: A review of clinical trial data". Mol Autism, 11(1), doi:10.1186/s13229-020-00348-w

  • B. Reichow, K. Hume, E.E. Barton, B.A. Boyd (2018). "Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD)". Cochrane Database Syst Rev, 5(5), doi:10.1002/14651858.CD009260.pub3

  • G.A. Rekers, I. Lovaas (1974). "Behavioral treatment of Deviant Sex-Role Behaviors in a Male Child". J Appl Behav Anal, 7(2), doi:10.1901/jaba.1974.7-173

  • The Global Autistic Task Force on Autism Research (2022). "An open letter to the Lancet Commission on the future of care and clinical research in autism". (Source)

  • L. Roche, D. Adams, M. Clark (2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25(2), doi:10.1177/1362361320959952

  • D.A. Rossignol, J.J. Bradstreet, K. Van Dyke, et al. (2012). "Hyperbaric oxygen treatment in autism spectrum disorders". Med Gas Res, 2(1), doi:10.1186/2045-9912-2-16

  • A.H. Sandoval-Norton, G. Shkedy, J.A. Rushby (2019). "How much compliance is too much compliance: Is long-term ABA therapy abuse?". Cogent Psychol, 6(1), doi:10.1080/23311908.2019.1641258

  • P. Sanz-Cervera, M.I. Fernández-Andrés, G. Pastor-Cerezuela, R. Tárraga-Mínguez (2018). "The effectiveness of TEACCH intervention in autism spectrum disorder: A review study". Papeles del Psicólogo, 39(1), doi:10.23923/pap.psicol2018.2855

  • N. Sasson, D. Faso, J. Nugent, et al. (2017). "Peers are less willing to interact with those with autism based on thin slice judgments". Sci Rep, 7(1), doi:10.1038/srep40700

  • Union of the Physically Impaired Against Segregation (1976). "Fundamental Principles of Disability: Being a Summary of the Discussion Held on 22nd November, 1975 and Containing Commentaries from Each Organisation". UPIAS/Disability Alliance.

  • J. Sinclair (2022). "Autism Network International: The development of a community and its culture". (Source)

  • J. Sinclair (2010). "Cultural commentary: Being autistic together". Disabil Stud Q, 30(1). (Source)

  • E. Sonuga-Barke, A. Thapar (2021). "The neurodiversity concept: Is it helpful for clinicians and scientists?". Lancet Psychiatry, 8, doi:10.1016/S2215-0366(21)00239-6

  • S.D. Stagg, H. Belcher (2019). "Living with autism without knowing: Receiving a diagnosis in later life". Health Psychol Behav Med, 7(1), doi:10.1080/21642850.2019.1631622

  • L.A. Stewart, L.C. Lee (2017). "Screening for autism spectrum disorder in low- and middle-income countries: A systematic review". Autism, 21(5), doi:10.1177/1362361316664181

  • The National Autistic Taskforce (2022). "The National Autistic Taskforce". (Source)

  • The National Autistic Taskforce (2019). "An Independent Guide to Quality Care for Autistic People". (Source)

  • K. Williams* (2019). "The fallacy of functioning labels". The National Centre for Mental Health. (Source)

  • C.X. Yap, A.K. Henders, G.A. Alvares, et al. (2021). "Autism-related dietary preferences mediate autism-gut microbiome associations". Cell, 184(24), doi:10.1016/j.cell.2021.11.016

  • Suomen Autismikirjon Yhdistys, Organiserade Aspergare, Eesti Aspergerite Ühing (2016). "Response to the European Medicines Agency regarding ‘Draft guideline on the clinical development of medicinal products for the treatment of Autism Spectrum Disorder’". (Source)

  • Xinhua News Agency (2022). "China launches large-scale autism study using fecal transplant therapy". www.china.org.cn/china/Off_the_Wire/2022-01/22/content_78005649.htm


 
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