Qualité de vie des mères d’enfants présentant un trouble du spectre de l’autisme (TSA) alors qu’ils fréquentent une classe spéciale de niveau primaire ou secondaire

Le trouble du spectre de l’autisme (TSA) est un trouble neurodéveloppemental caractérisé par des déficits de la communication sociale et par des comportements et des intérêts répétitifs et restreints. Ce diagnostic entraîne des changements majeurs pour tous les membres de la famille et dans le parcours scolaire de l’enfant. Au Québec, tous les enfants présentant un TSA sont scolarisés dès l’âge de quatre ans jusqu’à leurs 21 ans. Certains enfants sont intégrés dans des classes ordinaires et d’autres, dans des classes spéciales. L’objectif de cet article est, d’une part, d’évaluer la qualité de vie des mères d’enfants ayant un TSA scolarisés en classe spéciale, ainsi que les variables transactionnelles (stress perçu, contrôle perçu, soutien social perçu, stratégies d’adaptation) pouvant l’influencer et, d’autre part, d’étudier l’effet du niveau scolaire (primaire versus secondaire) sur la qualité de vie de ces mères. Pour ce faire, 30 mères d’enfants ayant un TSA fréquentant une classe spéciale au primaire (n = 16) et au secondaire (n = 14) ont complété différentes échelles. Les résultats n’indiquent pas de différence significative sur la qualité de vie des mères et le niveau scolaire de l’enfant. Toutefois, les domaines les moins touchés sont les activités et les relations professionnelles pour les mères dont l’enfant fréquente le primaire et l’épanouissement personnel, ainsi que les relations avec le jeune pour celles dont l’enfant fréquente le secondaire. Ainsi, il serait bénéfique de développer un accompagnement parental sur la gestion du stress et des émotions, la rectification des cognitions dysfonctionnelles et la résolution de problèmes. Ce programme d’accompagnement permettrait d’évaluer les parents à risque de vivre une moindre qualité de vie, de donner de l’information sur le TSA, sur les services scolaires et sur le stress, de gérer l’anxiété et les émotions, de remédier aux pensées dysfonctionnelles, de résoudre les problèmes et d’ajuster les stratégies d’adaptation utilisées.

Autism Spectrum Disorder (ASD) is a neuro-developmental disorder characterized by deficits in social communication and by restricted repetitive patterns of behavior and interests. The Diagnostic and Statistical Manual of Mental Disorders introduces the notion of autistic spectrum and defines different degrees of intensity and frequency of symptoms. This notion makes it possible to categorize the disorder into three levels of severity in terms of the support required by the child. The severity of symptoms has a direct effect on the quality of life of parents and leads to major changes for all family members, as well as in the schooling of the child. In Quebec, schooling is provided for all children with ASD from the age of 4 to 21. Some children attend mainstream classes and others go to special classes. Generally, pupils with ASD who require substantial support from an adult to carry out daily activities attend the special classes. The adaptation of parents faced with ASD can be understood based on the transactional, integrative and multifactorial model proposed by Bruchon-Schweitzer (2001), which stipulates that personal and environmental antecedents influence transactional processes (perceived stress, perceived control, perceived social support, adaptive strategies) and adaptive issues. The aim of this article is, on the one hand, to evaluate the quality of life of mothers of children with ASD schooled in special classes, as well as the transactional variables (perceived stress, perceived control, perceived social support, adaptive strategies) which could influence it, and, on the other hand, to study the effect of the school level (primary vs secondary) on the quality of life of these mothers. In order to do this, 30 mothers of children with ASD attending a special class in primary school (n = 16) and in secondary school (n = 14) completed different scales. The results did not indicate any significant difference on the quality of life of mothers and the school level of the child. However, the least affected areas were the professional activities and relationships of the mothers whose child attended primary school, and personal development as well as relationships with the child, for those whose child was in secondary education. With regard to perceived stress, the two groups of mothers perceived their child's ASD as a challenge. The latter had a tendency to consider their experience with a child with ASD as pleasant, stimulating, enriching, passionate, instructive and exciting. In terms of perceived control, mothers whose children were in primary and in secondary education felt that they had control over the development of their child, and this was due to their actions or to the actions of outside persons. Therefore, they appeared to be able to influence the developmental evolution of their child. With regard to social support, it was noted that, on average, mothers with children in primary and in secondary education obtained a higher availability score than satisfaction score, thus they were grateful for the availability of people close to them, but seemed less satisfied with the support offered. Also, mothers of children with ASD in primary and secondary education had, on average, a tendency to use the same adaptive strategies. Indeed, they favored strategies centered on the problem and centered on social support, over strategies centered on emotion. It would be beneficial to develop parental support to deal with stress and emotional management, the correction of dysfunctional cognitions and problem resolution. This support program would enable the evaluation of parents at risk of experiencing a lower quality of life, provide information on the ASD, on school services and stress, manage anxiety and emotions, remedy dysfunctional thoughts, resolve problems and adjust coping strategies.