'Pas de sortie possible sauf par une intervention extérieure' : témoignages de première main sur l'inertie autistique

Ajouté le 14/08/2024

Type de contenu

Article de revue du type Témoignage ( ; anglais)

Karen Buckle*, Kathy Leadbitter, Ellen Poliakoff, Emma Gowen , 'No way out except from external intervention': first-hand accounts of autistic inertia publié dans la revue "Frontiers in psychology", n°12, 17 pages , doi:10.3389/fpsyg.2021.631596

*Un·e co-auteur·rice est autiste. [En savoir plus sur cette mention]

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Cette étude, demandée par des personnes autistes et dirigée par une chercheuse autiste, est la première à explorer l'« inertie autistique », une difficulté répandue et souvent débilitante à agir selon leurs intentions. Les recherches précédentes se sont concentrées sur l'initiation uniquement dans le contexte des interactions sociales ou des conditions expérimentales. Cette étude est unique en ce qu'elle prend en compte la difficulté d'initier des tâches de tout type dans des situations de la vie réelle et recueille des données qualitatives directement auprès de personnes autistes. Quatre groupes de discussion en face-à-face et deux en ligne (par texte) ont été réalisés avec 32 adultes autistes (19 femmes, 8 hommes et 5 autres), âgés de 23 à 64 ans, capables d'exprimer leurs expériences internes avec des mots. Ils détaillent les actions avec lesquelles ils ont des difficultés, ce qui rend l'action plus facile ou plus difficile, et l'impact sur leur vie. L'analyse thématique des transcriptions a révélé quatre thèmes principaux : descriptions de l'inertie, échafaudages pour soutenir l'action, influence du bien-être, et impact sur les activités quotidiennes. Les participants ont décrit une difficulté à commencer, arrêter et changer d'activités qui échappe à leur contrôle conscient. Bien que la difficulté à planifier soit courante, un sous-groupe de participants a décrit une incapacité profonde à initier même des actions simples, suggérant davantage un trouble du mouvement. Les incitations et une activité compatible dans l'environnement favorisaient l'action, tandis que les difficultés de santé mentale et le stress aggravaient les problèmes. L'inertie avait des effets pervasifs sur les activités quotidiennes et le bien-être des participants. Cette recherche attendue depuis longtemps ouvre la voie à de nombreuses autres investigations pour mieux comprendre l'inertie autistique et les stratégies de soutien efficaces.

This study, called for by autistic people and led by an autistic researcher, is the first to explore 'autistic inertia,' a widespread and often debilitating difficulty acting on their intentions. Previous research has considered initiation only in the context of social interaction or experimental conditions. This study is unique in considering difficulty initiating tasks of any type in real life settings, and by gathering qualitative data directly from autistic people. Four face-to-face and 2 online (text) focus groups were conducted with 32 autistic adults (19 female, 8 male, and 5 other), aged 23-64 who were able to express their internal experiences in words. They articulate in detail the actions they have difficulty with, what makes it easier or harder to act, and the impact on their lives. Thematic analysis of the transcripts found four overarching themes: descriptions of inertia, scaffolding to support action, the influence of wellbeing, and the impact on day-to-day activities. Participants described difficulty starting, stopping and changing activities that was not within their conscious control. While difficulty with planning was common, a subset of participants described a profound impairment in initiating even simple actions more suggestive of a movement disorder. Prompting and compatible activity in the environment promoted action, while mental health difficulties and stress exacerbated difficulties. Inertia had pervasive effects on participants' day-to-day activities and wellbeing. This overdue research opens the door to many areas of further investigation to better understand autistic inertia and effective support strategies.

Pour information:

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

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

  • A. Abbott, A. Linke, A. Nair, A. Jahedi, L. Alba, C. Keown, I. Fishman, R. Müller (2018). "Repetitive behaviors in autism are linked to imbalance of corticostriatal connectivity: a functional connectivity MRI study". Social Cognitive and Affective Neuroscience, 13(1). doi:10.1093/scan/nsx129

  • I. Bertilsson, A. Lundvik Gyllensten, A. Opheim, G. Gard, C. Sjödahl Hammarlund (2018). "Understanding one's body and movements from the perspective of young adults with autism: A mixed-methods study". Research in Developmental Disabilities, 78. doi:10.1016/j.ridd.2018.05.002

  • 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

  • J. Bramham, F. Ambery, S. Young, R. Morris, A. Russell, K. Xenitidis, P. Asherson, D. Murphy (2009). "Executive functioning differences between adults with attention deficit hyperactivity disorder and autistic spectrum disorder in initiation, planning and strategy formation". Autism, 13(3). doi:10.1177/1362361309103790

  • M. Brandimonte, P. Filippello, E. Coluccia, M. Altgassen, M. Kliegel (2011). "To do or not to do? Prospective memory versus response inhibition in autism spectrum disorder and attention-deficit/hyperactivity disorder". Memory, 19(1). doi:10.1080/09658211.2010.535657

  • V. Braun, V. Clarke (2006). "Using thematic analysis in psychology". Qualitative Research in Psychology, 3(2). doi:10.1191/1478088706qp063oa

  • V. Braun, V. Clarke (2019). "Reflecting on reflexive thematic analysis". Qualitative Research in Sport, Exercise and Health, 11(4). doi:10.1080/2159676x.2019.1628806

  • V. Braun, V. Clarke (2021). "One size fits all? What counts as quality practice in (reflexive) thematic analysis?". Qualitative Research in Psychology, 18(3). doi:10.1080/14780887.2020.1769238

  • J. Breen (2014). "An Empirical Investigation Into Autistic Catatonia: The Development of the Autistic Catatonia Questionnaire (ACQ)". Manchester: University of Manchester.

  • J. Breen, D. Hare (2017). "The nature and prevalence of catatonic symptoms in young people with autism". J intellect Disabil Res, 61(6). doi:10.1111/jir.12362

  • J. Brenner, Z. Pan, C. Mazefsky, K. Smith, R. Gabriels (2018). "Behavioral Symptoms of Reported Abuse in Children and Adolescents with Autism Spectrum Disorder in Inpatient Settings". J Autism Dev Disord, 48(11). doi:10.1007/s10803-017-3183-4

  • K. Buckle* (2021). "Tips for Using Text Chat for Meetings and Qualitative Research with Autistic People". (Source)

  • 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

  • J. Carmo, E. Duarte, C. Souza, S. Pinho, C. Filipe (2017). "Brief Report: Testing the Impairment of Initiation Processes Hypothesis in Autism Spectrum Disorder". J Autism Dev Disord, 47(4). doi:10.1007/s10803-017-3031-6

  • 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

  • A. Donnellan, D. Hill, M. Leary (2013). "Rethinking autism: implications of sensory and movement differences for understanding and support". Front. Integr. Neurosci., 6. doi:10.3389/fnint.2012.00124

  • K. Fournier, C. Hass, S. Naik, N. Lodha, J. Cauraugh (2010). "Motor Coordination in Autism Spectrum Disorders: A Synthesis and Meta-Analysis". J Autism Dev Disord, 40(10). doi:10.1007/s10803-010-0981-3

  • M. Hollocks, J. Lerh, I. Magiati, R. Meiser-Stedman, T. Brugha (2010). "Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis". Psychol. Med., 395:311905

  • V. Hoofs, M. Princen, E. Poljac, A. Stolk, E. Poljac (2018). "Task switching in autism: An EEG study on intentions and actions". Neuropsychologia, 117. doi:10.1016/j.neuropsychologia.2018.07.008

  • C. Hudson, L. Hall, K. Harkness (2019). "Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: a Meta-Analysis". J Abnorm Child Psychol, 47(1). doi:10.1007/s10802-018-0402-1

  • 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

  • G. Kohls, C. Chevallier, V. Troiani, R. Schultz (2012). "Social 'wanting' dysfunction in autism: neurobiological underpinnings and treatment implications". J Neurodevelop Disord, 4(1). doi:10.1186/1866-1955-4-10

  • M. Leary, D. Hill (1996). "Moving on: autism and movement disturbance". Ment. Retard., 34, 39–53.

  • D. Milton* (2017). "Going with the flow: autism and ‘flow states'". Proceedings of the Enhancing Lives – Reducing Restrictive Practices, Basingstoke.

  • X. Ming, M. Brimacombe, G. Wagner (2007). "Prevalence of motor impairment in autism spectrum disorders". Brain and Development, 29(9). doi:10.1016/j.braindev.2007.03.002

  • X. Ming, P. O.O. Julu, J. Wark, F. Apartopoulos, S. Hansen (2004). "Discordant mental and physical efforts in an autistic patient". Brain and Development, 26(8). doi:10.1016/j.braindev.2004.02.005

  • C. Miserandino (2003). "The Spoon Theory". (Source)

  • L. Mottron, M. Dawson*, I. Soulières, B. Hubert, J. Burack (2006). "Enhanced Perceptual Functioning in Autism: An Update, and Eight Principles of Autistic Perception". J Autism Dev Disord, 36(1). doi:10.1007/s10803-005-0040-7

  • L. Neil, N. Choque Olsson, E. Pellicano (2016). "The Relationship Between Intolerance of Uncertainty, Sensory Sensitivities, and Anxiety in Autistic and Typically Developing Children". J Autism Dev Disord, 46(6). doi:10.1007/s10803-016-2721-9

  • G. Northoff (2002). "What catatonia can tell us about 'top-down modulation': A neuropsychiatric hypothesis". Behav Brain Sci, 25(5). doi:10.1017/s0140525x02000109

  • S. Ozonoff, J. Jensen (1999). "Brief report: specific executive function profiles in three neurodevelopmental disorders". Journal of Autism and Developmental Disorders, 29(2). doi:10.1023/a:1023052913110

  • A. Ozsivadjian, M. Hollocks, I. Magiati, F. Happé, G. Baird, M. Absoud (2021). "Is cognitive inflexibility a missing link? The role of cognitive inflexibility, alexithymia and intolerance of uncertainty in externalising and internalising behaviours in young people with autism spectrum disorder". Child Psychology Psychiatry, 62(6). doi:10.1111/jcpp.13295

  • T. Paterson (2016). "Using the Maori Creation Story to Navigate Autistic Inertia". Altogether Autism Journal. (Source)

  • A. Pelzer, F. van der Heijden, E. den Boer (2018). "Systematic review of catatonia treatment". NDT, Volume 14. doi:10.2147/ndt.s147897

  • N. Riggs, L. Jahromi, R. Razza, J. Dillworth-Bart, U. Mueller (2006). "Executive function and the promotion of social–emotional competence". Journal of Applied Developmental Psychology, 27(4). doi:10.1016/j.appdev.2006.04.002

  • J. Robledo, A. Donnellan, K. Strandt-Conroy (2012). "An exploration of sensory and movement differences from the perspective of individuals with autism". Front. Integr. Neurosci., 6. doi:10.3389/fnint.2012.00107

  • O. Sacks (1976). "Awakenings". Harmondsworth: Pelican Books.

  • A. Shah (2019). "Catatonia, Shutdown and Breakdown in Autism". London: Jessica Kingsley Publishers.

  • A. Shah, L. Wing (2006). "Psychological Approaches to Chronic Catatonia-like Deterioration in Autism Spectrum Disorders". International Review of Neurobiology. doi:10.1016/s0074-7742(05)72015-8

  • P. Shakes, A. Cashin (2019). "Identifying Language for People on the Autism Spectrum: A Scoping Review". Issues in Mental Health Nursing, 40(4). doi:10.1080/01612840.2018.1522400

  • D. Ben Shalom (2000). "Developmental Depersonalization: The Prefrontal Cortex and Self-Functions in Autism". Consciousness and Cognition, 9(3). doi:10.1006/ccog.2000.0453

  • M. Sparrow (2016). "'Unstrangemind', Autistic Inertia: An Overview". Redwood City, CA: Myers-Rosa Foundation. (Source)

  • E. Torres, A. Donnellan (2015). "Editorial for research topic 'Autism: the movement perspective'". Front. Integr. Neurosci., 9. doi:10.3389/fnint.2015.00012

  • L. Uddin (2021). "Brain Mechanisms Supporting Flexible Cognition and Behavior in Adolescents With Autism Spectrum Disorder". Biological Psychiatry, 89(2). doi:10.1016/j.biopsych.2020.05.010

  • C. Welch, D. Cameron, M. Fitch, H. Polatajko (2021). "Living in autistic bodies: bloggers discuss movement control and arousal regulation". Disability and Rehabilitation, 43(22). doi:10.1080/09638288.2020.1729872

  • C. Welch, H. Polatajko, P. Rigby, M. Fitch (2019). "Autism inside out: lessons from the memoirs of three minimally verbal youths". Disability and Rehabilitation, 41(19). doi:10.1080/09638288.2018.1465133

  • D. Williams, C. Jarrold, C. Grainger, S. Lind (2013). "Diminished time-based, but undiminished event-based, prospective memory among intellectually high-functioning adults with autism spectrum disorder: Relation to working memory ability.". Neuropsychology, 28(1). doi:10.1037/neu0000008

  • L. Wing, A. Shah (2000). "Catatonia in autistic spectrum disorders". Br J Psychiatry, 176(4). doi:10.1192/bjp.176.4.357

  • L. Wing, A. Shah (2006). "A Systematic Examination of Catatonia‐like Clinical Pictures in Autism Spectrum Disorders". International Review of Neurobiology. doi:10.1016/s0074-7742(05)72002-x

  • K. Yamanaka, H. Fukuyama, J. Kimura (1996). "Abulia from unilateral capsular genu infarction: Report of two cases". Journal of the Neurological Sciences, 143(1-2). doi:10.1016/s0022-510x(96)00201-8

  • M. Yeung, A. Chan (2020). "Executive function, motivation, and emotion recognition in high-functioning autism spectrum disorder". Research in Developmental Disabilities, 105. doi:10.1016/j.ridd.2020.103730


 
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