Perspectives parentales concernant les enfants atteints de mutisme sélectif et d'autisme concomitant
Titre original en anglais : Parent perspectives of children with selective mutism and co-occurring autism
Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.
À propos de la mention auteur·ice autisteKeville, S., Zormati, P., Shahid, A., Osborne, C., & Ludlow, A. K. (2023). Parent perspectives of children with selective mutism and co-occurring autism. International Journal of Developmental Disabilities, 70(7), 1251-1261. https://doi.org/10.1080/20473869.2023.2173835
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Auteurs
Résumé
Le mutisme sélectif (MS) et l'autisme coexistent fréquemment, exacerbant les déficits de communication sociale et l'anxiété associée. Cependant, les professionnels n'ont pas été disposés à diagnostiquer conjointement le MS et l'autisme, ce qui rend cruciale la nécessité de comprendre les expériences parentales liées à la prise en charge d'un enfant atteint de MS et d'autisme. La présente étude a utilisé l'Analyse Phénoménologique Interprétative (IPA) pour explorer l'expérience des parents prenant soin d'enfants atteints de MS et d'autisme. Des entretiens semi-structurés ont été menés auprès de onze mères et d'un père d'enfants âgés de 5 à 18 ans. Tous les enfants avaient reçu un diagnostic de MS et avaient entrepris, ou étaient alors en cours d'accomplissement, d'un processus diagnostique de l'autisme. L'analyse des transcriptions a abouti aux thèmes suivants : Complexités liées aux problèmes concomitants ; L'impact accablant du MS ; Le parcours diagnostique ; Trouver des solutions et défendre les intérêts. Les jugements et la minimisation des symptômes par les systèmes éducatif et de santé ont aggravé les retards de diagnostic, empêchant une intervention appropriée. Les complexités liées à la prise en charge d'un enfant atteint de MS et d'autisme, parallèlement à des incompréhensions plus larges, ont exacerbé le stress parental, avec des répercussions sur la famille. La défense des intérêts par les parents et des environnements sécurisants ont offert aux enfants des possibilités de mieux gérer le mutisme dépendant du contexte. Des améliorations de l'identification et une compréhension empreinte de compassion de la part des systèmes plus larges, en impliquant les parents comme parties prenantes essentielles, sont indispensables pour améliorer cette situation.
Bibliographie citée par cette référence
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