Au regard de la littérature, il reste difficile d’obtenir une connaissance précise du développement, à l’âge adulte, des personnes présentant un TSA et une DI associée. En effet, les études disponibles se basent sur des populations hétérogènes en termes d’âge chronologique, d’intensité symptomatologique et de sévérité de la DI. Il semblerait toutefois que, de manière générale, ce sont les personnes les plus déficientes qui connaissent les changements les moins significatifs.
Cette étude exploratoire, portant sur 7 sujets adultes présentant un autisme associé à une DI sévère, vise à retracer le parcours de vie de ces personnes. Nous nous sommes donc attachés à décrire rétrospectivement, sur une période de trente ans, leurs évolutions depuis leurs 20 ans, au travers de l’examen de différentes variables : symptomatologie, troubles du comportement, niveau de langage expressif, relations interpersonnelles, autonomie dans la vie quotidienne, comorbidités médicales (somatiques et psychiatriques) et traitements médicamenteux par psychotropes.
Notre hypothèse générale postulait la présence de changements discrets, davantage appréciables sur un plan qualitatif que quantitatif.
La méthodologie a consisté en un recueil de données à partir des dossiers médico-éducatifs d’une part et d’entretiens auprès du personnel de prise en charge d’autre part. Toutes nos variables ont pu faire l’objet, pour chaque sujet, d’une analyse qualitative. Par ailleurs, les variables inhérentes aux profils clinique, comportemental et adaptatif ont bénéficié d’une analyse quantitative par traitements statistiques. Compte-tenu de la taille limitée de notre échantillon, nous avons choisi de procéder à un ré-échantillonage par boostraping pour chaque profil à chaque temps. L’éventuelle présence de changements a ensuite été recherchée au moyen de l’Anova de Friedman et du test des signes.
Les résultats statistiques obtenus n’ont pas permis de mettre en évidence d’évolution significative pour aucun des sujets. En revanche, l’analyse qualitative permet de repérer pour certains sujets de discrètes évolutions positives, notamment sur le plan de la symptomatologie, des troubles du comportement et du niveau adaptatif.
Notre hypothèse apparaît donc validée et congruente avec une partie de la littérature. La discrétion des changements observés au sein de notre population semble ainsi pouvoir s’expliquer en partie par l’intensité de la DI associée. Par ailleurs, le phénomène de niche écologique caractérisé par une prise en charge « similaire » depuis trente ans et non spécifique aux TSA, pourrait également freiner l’évolution positive de ces personnes. Nous insistons cependant sur le fait que l’ensemble de nos sujets a évolué positivement, certes de manière non significative, sur au moins l’une des variables de notre étude.
Il nous apparaît ainsi primordial de soutenir ces évolutions au moyen d’interventions éducatives spécifiques comme celles qui sont proposées aux enfants et adolescents porteurs d’un TSA avec DI associée. Il est important de noter que la prochaine génération d’adultes a déjà fait l’objet, durant l’enfance, de tels accompagnements au sein des établissements médico-sociaux et il semble donc indispensable d’assurer une continuité dans leur parcours de prise en charge.
Enfin, compte tenu du manque de littérature portant sur ces populations avec TSA, déficitaires et vieillissantes, il nous semble nécessaire de mener davantage de recherches afin de mieux caractériser leurs spécificités et besoins en matière d’accompagnement.
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