Les besoins exprimés par les parents d’enfants ayant un TSA : une étude exploratoire franco-québécoise

Abstract

ObjectivesChildren with Autism Spectrum Disorder (ASD) may present, from birth, a range of behaviours, somewhat difficult to understand. For instance, language delays, a lack of social and emotional reciprocity, stereotypies and unusual behaviours, sleeping disorder or even eating issues may be observed. Such behaviours can significantly impair the daily functioning of families. Parents may not have all the necessary resources to face challenges associated with ASD. They might not always know how to educate their child or how to satisfy his needs which go beyond the basic needs of children without ASD present. Not only do they have to feed, dress, educate, encourage, stimulate and love their children, they also need to satisfy more specific needs. To do so, parents need to acquire and strengthen knowledge and abilities. Adaptive behaviours (i.e., autonomy) as well school, social and professional integration are greatly impaired by the severity of symptoms, meaning that limitations in these areas are more important when the severity of the disorder increases. ASD is considered to be a disability affecting all areas of parents’ lives. Individuals with ASD learn differently and require constant attention, thus their needs will become central and more often than not, activities of the family are reorganized around their needs. MethodsTo understand the needs of families of children with ASD, 257 parents of Quebec and France participated to the study. In Quebec, 101 parents (91 mothers and 6 fathers) were recruited through a private clinic and through Quebec's Federation of Autism. In France, 160 parents (113 mothers and 47 fathers) were recruited with the support of 15 clinical services and 4 parents’ associations. A sociodemographic form as well as a questionnaire on needs were sent to parents. Data obtained through these quantitative measures were analyzed. ResultsIt appears that more mothers than fathers completed the questionnaires. Even though parents in Quebec tend to keep their paid employment, their salary is perceived as being insufficient to satisfy the needs of their family. Most parents, Quebecer or French, live with their significant other and have at least two children including the one with ASD. Results show that French children are diagnosed later. However, they receive intervention earlier. In our sample, most children are verbal and one third use a communication system whether they are verbal or not. Parents in France believe their child presents weak adaptive skills, embarrassing behaviours and co-occurring disorders (i.e., eating disorders, sleeping disorders, etc.) even more so than parents in Quebec. More children in Quebec are enrolled in school and benefit from activities organized in integrated settings. However, more French children attend regular classrooms. Children in Quebec are enrolled as full-time students no matter what type of class they evolve in, which is rarely the case for children in France. Data with regard to the needs reveal that Quebec parents seek professional advice when making decisions about their child's future. They want their child to benefit from interventions adapted to his level of functioning. They show a desire to be listened to and encouraged. They want to learn more about their child's abilities and effective educative strategies. Few parents have expressed a need to get help from other parents or from their association to get more information on ASD and to share their own experience as parents. As for French parents, they tend to seek more information on intervention programs and specialized services that can be offered to their child and their family. They express the desire for care management that is more suited to their needs. They wish for optimal accompaniment to ensure their child's social participation. They believe a network of specialized and trained babysitters should be developed. They would like guidance concerning the education and the future of their child. As far as help from other parents and from their association is concerned, results show a similar perception of parents in Quebec. ConclusionsIn conclusion, it seems that all parents, French and Quebecer, show similar needs in regards to professional and educative advice when making decisions. Also, they all wish for their child to benefit from interventions adapted to their level of functioning. Children with ASD go through various transitions (daycare, school setting, youth, adulthood), just as any other children. However, they require specific and planned interventions tailored to their needs. Professional advice appears useful to guide families through these important steps. In addition, few parents from France or Quebec require help from other parents or their association. This result may be attributed to the increasing amount of information and help available through Internet (websites, discussion forums, etc.). Indeed, numerous parents of children with ASD visit discussion forums, for multiple purposes, either to find information, to confide, to ask for guidance or even to offer their help to parents living similar experiences.