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, Inclusion scolaire des enfants TSA et interventions basées sur les nouvelles technologies : une revue de littérature
, Auteurs. Charles Fage, vol.1, p.3
, Quartier Village 2, B38 -rue de l'aunaie, 30. B-4000 Liège
, , p.33000
, Ces atteintes doivent pouvoir être observées précocement dans le développement de la personne, impacter significativement son autonomie sans pouvoir être expliquées par une déficience intellectuelle seule. Les difficultés associées aux TSA en vie quotidienne limitent grandement l'inclusion scolaire en classe ordinaire des enfants avec TSA. Pour l'année scolaire, les Troubles du Spectre Autistique (TSA) décrivent des troubles neurodéveloppementaux caractérisés par des déficiences dans deux domaines majeurs : la communication sociale et les activités et intérêts restreints (comportements répétitifs et stéréotypies), 2013.
, Aussi, ces élèves bénéficient de matériel adapté dans 4,4% des cas. Dans ce rapport, « les élèves avec troubles intellectuels rencontrent le plus de difficultés a? suivre un cursus ordinaire » (pour revue, 2016.
, La variété des profils cognitifs au sein de la population des enfants avec TSA requiert des prises en charge individuelles spécialisées et par conséquent, des assistances individualisées pour surmonter les barrières de leur participation sociale, qui sont malheureusement largement renforcées par les attentes normalisées des environnements de vie quotidienne
, Ces interventions présentent souvent de bons résultats quant à l'amélioration des comportements ou des processus cognitifs ciblés, mais n'affichent généralement pas de transfert (i.e., généralisation) aux situations de vie quotidienne, Typiquement, les prises en charge sont menées dans des structures spécialisées, en ville dans le cabinet d'un thérapeute, 2002.
, Les interventions d'Instruction Assistée par Ordinateur (ou Computer-Assisted Instruction
, Si elles peuvent adresser spécifiquement l'ensemble des troubles cognitifs associés aux TSA, des auteurs ont proposé de considérer 4 catégories de domaines d'application des CAI numériques : la communication, les aptitudes sociales, la reconnaissance des émotions, ainsi que les processus de Théorie de l'Esprit (Theory-of-Mind en anglais dont l'acronyme est ToM, Les interventions d'Instruction Assistée par Ordinateur (notées CAI) dans cet article comme dans la littérature anglophone pour Computer Assisted Instruction) numériques sont généralement réservées aux environnements protégés, 2013.
, La grande majorité des interventions basées sur les technologies auprès d'élèves ou d'enfants d'âge préscolaire avec TSA cible, encore aujourd'hui, l'apprentissage des compétences verbales : lecture, écriture, compréhension, vocabulaire, etc. La rééducation des déficits dans l'expression et la réception du langage ainsi que de la lecture a été étudiée dès 1973, date à laquelle l'étude de Colby fait état pour la première fois de l'utilisation d'un ordinateur et d'un clavier pour encourager des enfants avec TSA à parler, 1973.
, de nombreux travaux ont été menés pour déterminer les effets de ces interventions basées sur ordinateur qui s'adressent aux enfants non-verbaux ou aux capacités communicationnelles très limitées
, Dans ce contexte, nous choisissions de présenter les études offrant les meilleures qualités méthodologiques (nombre de participants ou groupe contrôle permettant de mesurer la valeur ajoutée de l'intervention CAI). A cet égard, les dernières études reposant sur des systèmes robotiques ne seront, 1975.
, Dans une intervention comparant des instructions délivrées par ordinateur sous la forme de feedback visuels (un « speech-viewer ») avec des interactions traditionnelles, une augmentation significative de l'imitation vocale a été observée, Cependant, ces deux études n'impliquaient que très peu de participants (respectivement n=10 et n=3), 1999.
, ABRACADABRA), a permis à 20 enfants avec TSA ayant suivi le programme pendant 13 semaines d'obtenir « des gains considérables » en comparaison avec le groupe témoin, Très récemment, une étude rapprochant un programme pédagogique ave une solution technologique, 2017.
, préalable, notamment les capacités d'imitation et de compréhension ainsi que les capacités attentionnelles afin d'adapter les vidéos en termes de durée
, La coopération est encouragée au travers de tâches dans lesquelles les enfants doivent coordonner ensemble leurs actions sur l'interface pour réussir la tâche. Par exemple, un puzzle collaboratif permet aux pièces d'être déplacées uniquement lorsqu'elles sont touchées par deux enfants simultanément : les protocoles d'évaluation établissaient par exemple, des diades d'enfants avec TSA et d'un pair ordinaire dans la classe (pour revue : (Chen, 2012)). Plus récemment, au travers l'utilisation d'une table interactive, 14 enfants avec TSA ont pu améliorer significativement leurs interactions sociales positives et leurs jeux collaboratifs avec leurs pairs, Encore plus récemment, d'autres types d'approches pour la rééducation des compétences sociales des enfants avec TSA ont vu le jour : c'est le cas des tables interactives multi-touch (i.e., l'interface permet des interactions simultanées à plusieurs endroits, voir Figure A1, 2011.
, Dimensions of collaboration on a tabletop interface for children with autism spectrum disorder, Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, vol.18, pp.591-617, 2011.
, Si l'entraînement a permis de réduire les erreurs dans le groupe TSA, il a surtout permis des améliorations significatives de ce dernier dans les tâches d'identification des émotions sur photo, sur des images de cartoons ainsi qu'au travers d'histoires non-littérales (Histoires Étranges de Happé : l'enfant doit expliquer un énoncé abstrait qui vient de lui être énoncé -Happé, La reconnaissance des émotions a également fait l'objet d'interventions en environnement scolaire. Le logiciel « Emotion Trainer, 1994.
, réduisant ainsi la fiabilité des résultats. De plus, ces études incluaient relativement peu de participants. Figure A3 : Application d'aide à la communication de type CAA Reprinted from "Speech-generating devices: effectiveness of interface design: a comparative study of autism spectrum disorders, ) rapportent des résultats mitigés, 2012.
, Ces dispositifs visuels ont été inclus dès les premières versions des CAI pour les enfants avec TSA, que ce soit dans l'ABA 18 (Rosenwasser & Axelrod, 2001) et la méthode Lovaas 19 qui l'a implémentée, Les outils les plus utilisés dans les structures spécialisées prenant en charge les enfants avec TSA sont les programmes d'activités (ou Activity Schedules en anglais, 1999.
, Pour les auteurs, bien que les études examinées rapportent une faible validité sociale (mesures nonstandardisées, faisabilité et acceptabilité limitées), l'efficacité de ces supports réside dans la compensation des fonctions exécutives déficitaires associées aux TSA, ainsi qu'à la réduction de l'anxiété (i.e., nature invariante et explicite de l'interface, rendant la tâche
, En effet, leur utilisation dans la vie quotidienne peut être stigmatisante pour l'enfant ; leur création et leur adaptation aux besoins uniques de chaque enfant prennent un temps non-négligeables pour les enseignants spécialisés et les auxiliaires de vie scolaire, sans laisser d'opportunité de suivre la progression de l'enfant dans la tâche, 2010.
, Par exemple, le système vSked, une application pour la création et la gestion de programmes d'activités à l'échelle d'une classe a été conçu à partir d'entretiens (familles, enseignants, thérapeutes, enseignants spécialisés, neuroscientifiques) et d'observations directes dans 3 classes spécialisées américaines, Des résultats qualitatifs en termes de réduction de la charge de travail de l'équipe pédagogique ainsi que des améliorations de la communication et des interactions sociales entre les élèves ont été rapportés, 2007.
, A la fin des 8 semaines d'intervention, les participants présentaient une performance accrue dans la tâche, ainsi qu'une utilisation autonome de l'assistant. Enfin, plus récemment, l'application Classroom Schedule+, conçue spécifiquement pour soutenir l'inclusion scolaire des enfants avec TSA en classe ordinaire (voir Figure A4), comporte deux volets : l'un concernant les routines de classe et l'autre les routines communicationnelles. Ces applications ont été déployées en classe ordinaire auprès de 5 enfants avec TSA et 5 avec déficience intellectuelle (plus 5 enfants avec TSA contrôles) durant 3 mois. Les auteurs rapportent une utilisation autonome de l, D'autres interventions ont eu lieu dans l'environnement scolaire, afin d'assister les enfants à l'initiation, ou bien à la gestion des tâches. Cihak, et al. ont assisté des enfants avec TSA dans l'initiation d'une tâche scolaire classique (e.g., écrire, lire, écouter, etc.) à l'aide d'un smartphone, 2010.
, Déployées pendant 3 mois auprès de 50 enfants en classe ordinaire et au domicile, ces applications ont permis des améliorations aussi bien sur le plan des comportements (mesurés par des échelles standards -EQCA-VS 21 , SRS 22 ) que sur les processus cognitifs qui sous-tendent ces comportements (reconnaissance d'émotions, fluence émotionnelle, reconnaissance des visages, Cette dernière application s'inscrivait en réalité dans un projet global, nommé Collège+, rassemblant à la fois des applications d'assistance in situ (programmes d'activité, régulation émotionnelle) et des applications de remédiation cognitive (jeux sérieux autour des compétences de ToM, 2016.
, Échelle Québécoise des Comportements Adaptatifs -Version Scolaire, 2001.
, Social Responsiveness Scale (Constantino, 2004) Figure A4 : Application Classroom Schedule+ déployée en classe ordinaire pour soutenir les routines et la communication en classe ordinaire
, De même, les stimuli distracteurs doivent être évités, compte tenu de la présence fréquente de troubles d'inhibition attentionnelle associés aux TSA (Fombonne, 2003). Enfin, les interfaces devraient permettre des interactions sans erreur afin de favoriser les apprentissages procéduraux (souvent préservés dans le TSA) et d'éviter la frustration : pas de messages d'erreur, pas de réponse fausse, etc, ACM SIGACCESS Transactions in Accessible Computing, vol.8, issue.9, 2010.
, Proposée dans la majorité des programmes de prise en charge spécialisés aux TSA (e.g., ABA, TEACCH, Lovaas), la littérature a également mis en évidence la pertinence de l'utilisation des récompenses dans les interventions auprès des enfants avec TSA (pour revue, 2013.
, La conception participative
, Par exemple, une frise chronologique (« timeline ») visuelle de la séance de conception est affichée afin de guider l'enfant à travers les différentes tâches de conception. Le projet de recherche HANDS (Helping Autism-Diagnosed to Navigate and Develop Socially) vise quant à lui le développement d'une application mobile d'assistance à la communication sociale. Pour ce faire, les auteurs ont mis en place des focus groups dans trois écoles pour faire participer à la fois les enfants, les enseignants et les membres des équipes pédagogiques pour exprimer ensemble leurs besoins, 2007.
, En revanche, ici les auteurs vont plus loin, et proposent un outil numérique pour favoriser la conception participative avec les enfants avec TSA. Ils présentent le prototype d'un outil d'annotations, lui-même conçu en collaboration avec 7 enfants avec TSA. Validant l'efficacité de l'annotateur visuel, les auteurs rapportent même que l, ECHOES implique également les enfants avec TSA dans la conception d'un environnement d'apprentissage numérique, 2011.
, Les approches participatives permettent de faire émerger les préférences et les expériences-utilisateurs des enfants avec TSA pour l'implémentation des interventions basées sur les technologies, et ce, même sur des principes bien établis dans la littérature, 2017.
, On distingue généralement 3 aspects dans l'utilisabilité : l'efficacité (la capacité de l'utilisateur de réaliser la tâche attendue avec la technologie), l'efficience (la réalisation de la tâche en un minimum de temps et de ressources grâce à la technologie) et la satisfaction (propension à l'utilisation et confort). Des questionnaires spécifiques ont été développés pour l'évaluation de ces aspects, Les critères de l'EBP et autres dispositifs rappelés précédemment couvrent l'ensemble des aspects cliniques, 1996.
, Bien que tous ces outils soient disponibles, les études portant sur l'efficacité thérapeutique n'en tiennent pas compte pour évaluer l'impact des CAI. Pourtant, une récente étude signale les besoins hétérogènes du public TSA en termes d'accessibilité et d'utilisabilité des interfaces, et notamment en ce qui concerne le spectre autistique, 1996.
, Limites des travaux actuels
, Des protocoles expérimentaux à renforcer : Les enjeux méthodologiques ont été pointés du doigt depuis quelques années dans les interventions basées sur les technologies auprès des enfants avec TSA, 2016.
, En effet, certaines interventions, et particulièrement celles implémentées dans le cabinet du thérapeute ont pu bénéficier d'une validation clinique robuste, 2006.
, Si cet écart peut s'expliquer par des contraintes fortes du terrain, il reste également lié à une méconnaissance de l'ensemble des standards des différents champs de recherche en jeu. Combiner ces standards permettrait de renforcer significativement la qualité des protocoles expérimentaux tant sur la preuve clinique que sur celle relative à l, En revanche, d'autres interventions, plutôt basées sur des technologies mobiles ou robotiques, affichent des validations expérimentales limitées, 2013.
, La référence absolue en termes de validation clinique d'une intervention est évidemment l'étude de groupe randomisée (ou RCT pour Randomized Control Trial en anglais). Cependant, sur le terrain, il est souvent très difficile de rassembler un minimum de 40 participants, de constituer des groupes homogènes, etc. Les études de type CAI visent plutôt à valider un intérêt clinique, se tournant ainsi vers le champ des EBP (Evidence-Based Practice
, propose une classification des études CAI auprès des enfants avec TSA en fonction de critères méthodologiques stricts : il s'agit d'une part des critères d'Horner pour les études à sujet unique, complétés par les 20 indicateurs de qualité développés par le National Secondary Transition Annexes Technical Assistance Center (NSTTAC) ; et d'autre part Gersten pour les études de groupe. Ces critères couvrent les différents aspects du protocole : description et processus de sélection des participants, choix et réplicabilité des mesures, 2013.
, Les auteurs rappellent que pour qu'une intervention atteigne la certification d'Evidence-Based Practice (EBP), elle doit présenter non-seulement une validation expérimentale publiée sur ces critères, mais doit en réalité présenter plusieurs études impliquant au minimum 3 chercheurs, 20 participants et 3 sites géographiques différents, 2013.
, Désormais, les 29 études publiées entre 1995 et 2015 permettent de statuer de la pertinence des CAI auprès des enfants avec TSA sur les critères EBP. Ce résultat indique une nette progression dans la rigueur de validation de ces interventions ces dernières années. Cependant, sur les 12 études identifiées comme adéquates en termes de protocole expérimental, 8 étaient conduites en classe spécialisée, dont seulement une présentant des mesures de généralisation en classe ordinaire, 2017.
, qui proposent par exemple des séances préliminaires de formation au programme utilisé pour promouvoir la lecture et l'écriture sur base des manuels fournis par les auteurs. L'ensemble des progrès des participants dans le protocole sont documentés, Afin d'accompagner ces changements, et pour garantir l'impact des interventions, des CAI ont inclus des mesures de fidélité d'implémentation, 2017.
, qui doivent être généralisées à l'ensemble des CAI pour garantir les résultats affichés. Enfin, d'autres auteurs proposent des guides d'implémentation de ces interventions pour en tirer les plus grands bénéfices au sein de la classe, 2017.
, ces interventions ont toutes en commun de mettre l'enseignant spécialisé au centre du projet. D'ailleurs, dans leur intervention basée sur un smartphone pour faciliter la communication et les interactions sociales, De nombreuses interventions basées sur les nouvelles technologies mobiles ont été conduites dans le milieu scolaire. Que ce soit pour la conception (hirano2010vsked), pour la conduite de l'intervention, 2008.
, à 12, puis 12 à 15 en France), avec un enseignant spécialisé parfois formé aux prises en charge adaptées ainsi que sur un auxiliaire de vie scolaire, Cependant, ces interventions concernent toujours et uniquement les classes spécialisées, qui représentent des dispositifs à petits effectifs de classe, 2010.
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, les syndromes dys » chez l'enfant et les syndromes amnésiques, agnosiques, apraxiques chez l'adulte), et affectent alors sélectivement certains comportements de la personne. Dans les deux cas, le répertoire d'activités est impacté, la participation sociale est contrainte plaçant ainsi la personne en situation de handicap, qualifiée d'invisible pour signifier l'absence de « stigmates physiques » associés. Ces troubles, et les situations de handicap reliées, sont encore trop souvent méconnus du grand public, Springer. sous la forme d'une boucle Perception-Décision-Action, elle couvre un large spectre de connaissances et de mécanismes nécessaires aux comportements adaptifs, pp.93-106, 2004.
, Autonomie (TnA) et à la participation sociale. En effet, les progrès atteints dans ce domaine permettent d'envisager cette voie de recherche comme particulièrement prometteuse et porteuse de progrès social pour les personnes avec troubles cognitifs (Plan d'action Mondial 2014-21 -un meilleur état de santé des personnes handicapées, Avec la révolution numérique que connaît notre société, de nombreuses incitations et démarches sont opérées pour soutenir les recherches autour des Technologies numériques de soutien à l, 2016.
, Pour autant, les situations de handicap liées aux troubles cognitifs sont peu connues du public et bénéficient encore peu des progrès technologiques liés aux sciences du numérique
, Cette approche inclut également le respect des contraintes socioenvironnementales afin d'en assurer une adoption large, de l'utilisateur individuel jusqu'aux organismes de prise en charge du handicap. Pour l'asseoir, sur deux situations, l'inclusion scolaire et l'autonomie domiciliaire, sont exposés les résultats d'études menées depuis leur conception jusqu'à leur déploiement sur le terrain en passant par des validations scientifiques amont (notamment l'ergonomie des outils proposés) et aval (étude des gains auprès des personnes et leurs aidants). Les études présentées concernent spécifiquement des enfants avec, Après avoir défini les limites actuelles du domaine, et notamment, l'approche techno-centrée liée à leur conception et le manque de justifications empiriques aux allégations de santé qu
, ) ont élaboré une classification multicritères (technologiques et sanitaires). Les critères technologiques renvoient au type de dispositif et aux fonctionnalités supportées par la technologie. Pour les critères sanitaires, les auteurs s'appuient sur ceux établis par la CIF, Les TnA sont la dernière génération des technologies d'assistance. Ces dernières sont définies comme « tout outil, instrumental ou technologique, qui permet d'améliorer ou de maintenir les capacités fonctionnelles d'une personne présentant un handicap, 1997.
, Sur la base de ces deux catégories de critères, les technologies pour l'assistance cognitive sont alors répertoriées : -Selon la catégorie ISO 25 de la technologie, incluant : alarmes, audio-visuels, ordinateurs, téléphones, autre -Selon les fonctionnalités de la technologie
, Selon la fonction cognitive à assister, comprenant : l'attention, les capacités de calcul, la régulation émotionnelle, l'expérience du soi, les fonctions cognitives de haut niveau (planification et organisation d'une activité
, Selon les activités quotidiennes à assister, identifiées comme étant : l'apprentissage et l'application des connaissances, les tâches générales, la communication, la mobilité, les soins personnels (l'hygiène et l'habillage), la vie domestique, les interactions interpersonnelles, les aspects principaux de la vie (la vie professionnelle et l'éducation)
, Cette typologie présente l'avantage d'être très exhaustive et de pouvoir ainsi inclure la majorité des TnA existantes. Par sa référence à la CIF, elle s'émancipe du diagnostic médical et adopte un point de vue fonctionnel d'activités quotidiennes à assister. Elle met ainsi en exergue le caractère transverse de certaines technologies pour pallier des pertes fonctionnelles ou` par exemple, un prompteur d'activité peut être utilisé pour des objectifs d'apprentissage ou pour des objectifs de contournement de troubles exécutifs. De plus, la CIF étant le référentiel international
, initiée par les besoins et demandes des utilisateurs finaux, guidée par les capacités à interagir avec de tels systèmes, pour en assurer in fine une meilleure acceptabilité et adoption en vie ordinaire. ii. Technologies en silo et manque d'uniformisation des dispositifs : Bien qu'il existe de plus en plus de TnA destinées aux activités quotidiennes, aux activités sociales et à la sécurité de la personne, elles demeurent majoritairement en silo. Cette caractéristique induit une multiplication des dispositifs avec l'augmentation et/ou la diversification des besoins d'assistance, alors qu'un maximum de trois dispositifs d'assistances est à fournir à une personne avec troubles cognitifs pour qu'ils soient acceptés et utilisés, En regard de la littérature sont dénombrées quatre grandes limites actuelles : i. Conception techno-centrée : Beaucoup de dispositifs, de laboratoire ou commerciaux, se basent uniquement sur des représentations stéréotypées des chercheurs en informatique ou concepteurs à propos des besoins des personnes avec troubles cognitifs ou les demandes du marché, 2002.
, iv. Manque d'implication des aidants : Que ce soit dans le domaine de la recherche ou celui de la Silver Economie ou du marché de la E-santé (dispositifs commerciaux), les aidants sont peu pris en compte. Notamment Blaschke, et al. (2009) mettent en avant le fait que les aidants professionnels sont souvent peu informés des TnA existantes, et de leur impact sur leurs pratiques de travail. Aussi, l'impact sur le fardeau des aidants proches est rarement évalué, la majorité des études omet une validation clinique concernant les bénéfices de santé (effets thérapeutiques) apportés aux utilisateurs et leurs aidants, 2009.
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, L'utilisabilité est définie comme le « degré selon lequel un produit peut être utilisé, par des utilisateurs identifiés, pour atteindre des buts définis avec efficacité, efficience et satisfaction, dans un contexte d'utilisation spécifié, pp.9241-9252, 1998.
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