Introduction
Children are now considered to be an actor in their development and therefore able to participate in decisions that concern them (Florin, 2011). Hence, developmental psychology is interested in their well-being and personal fulfillment in order to promote their personal development (Florin & Guimard, 2017). At the same time, the perception of disability has evolved considerably to attain today a desire for inclusion in respect for the rights and freedoms of everyone (Magerotte, 2013). New laws have been promulgated to give the right to quality education for all children by meeting everyone’s needs (Ebersold & Detraux, 2013). Furthermore, the school has a new mission: to ensure the well-being of its students in order to improve their quality of life (QoL) and their personal development (Guimard et al., 2015). As a result, the schooling of children with disabilities is increasing and researchers are developing an interest in these students with special needs (Coudronnière, Bacro, & Guimard, 2017). However, very few studies involves students with Autism Spectrum Disorder (ASD). In addition, QoL measures are most often performed by third parties, parents, teachers and educators, but there is no known self-report measure of QoL for autistic children.
Objectives
The main objective of this study was to apprehend the QoL of autistic children aged 5 to 11, using a questionnaire self-assessment of the satisfaction in the various domains of life, this questionnaire having been validated with children with intellectual disability (Coudronnière, 2016). How do children with ASD evaluate the different areas of their lives? According to the literature, we assume that QoL of children with ASD is impaired (De Vries & Geurts, 2015). Therefore, we consider that children with ASD rate their overall life satisfaction as well as their QoL in the field of friends and school as being of lower quality than those of typical developing children. We also presume that the presence of disorders associated with autism impacts the overall life satisfaction of autistic children. Finally, just like for typical children (Coudronnière, Bacro, Guimard, & Florin, 2015), we hypothesize that the importance given to different life domains varies according to the age of the child with ASD.
Method
The recruitment of participants was particularly difficult and the questionnaire could only be administered to 19 children with ASD enrolled in ULIS-TED class in school, in Instituts Médico-Éducatifs (IME) and regular class. Therefore, we formed a single group of children with ASD regardless of the type of schooling. The comparison has been made with the group of children with typical development from the study of Coudronnière et al. (2017). We used a French adaptation of the QoL self-assessment scale, the Multidimensional Student’s Life Satisfaction Scale (MSLSS) in its abbreviated form (Huebner, Zullig, & Saha, 2012). This scale is used to assess children’s QoL by measuring their life satisfaction in the areas of family, relationships, school, self and lifestyle. Visual aids, in the form of emoticons, have been proposed to help children with the choice of their answer. For each item, the child had to give his degree of agreement or disagreement. Moreover, sociobiographical data were collected using a questionnaire for parents.
Results
Our assumptions are not verified. Indeed, the analyzes reveal that there is no significant difference between the group of children with typical development and the group of children with ASD regardless of the area of life considered. Autistic children do not seem to rate neither their overall life satisfaction nor their QoL in the areas of family and friends as being of lower quality than typical children. Furthermore, the life domains of children with ASD do not seem to change with age. Finally, the results suggest that autism-related disorders do not negatively impact the QoL of autistic children.
Discussion and conclusion
This study is exploratory and does not allow to conclude on the QoL of children with autism. The recruitment difficulties of the participants may partly explain the lack of significant results. Moreover, the specificities related to autism are also a possible clue that can explain the results. Indeed, the use of the questionnaire as it was presented may have been a hindrance in the collection of data. In particular, an adaptation time is necessary to establish good communication with the child, which is not allowed by the tool used. The atypical cognitive functioning of children with autism can also provide some explanations for these results, especially in terms of language understanding. The pragmatic level is particularly affected, which translates into inappropriate use of language in a communication context, even for children with a good level of verbal expression (Rogé, 2015). The use of verbal language seemed to us to be a limited way to help understanding the items in the questionnaire. Difficulties in the processing of information also hinder the development of efficient social interactions (Rogé, 2015). However, the use of touchscreens seems to be an interesting way to reduce the barriers related to the use of language (Jordan, 2008). Indeed, studies show that they promote concentration, collaboration and social interaction (Amar, Goléa, Wolff, Gattegno, & Adrien, 2012). They improve the skills of people with ASD in many areas (Garnier, 2017) and can be of great help in communication (Agius & Vence, 2016). Thus, it seems appropriate to carry on researches to study the QoL of children with autism by adapting the tools used to their specific functioning. Moreover, by pursuing these studies in the child’s schooling context, it could be possible to determine whether the aid offered to them takes into account their specific needs in order to improve the inclusion mechanisms for these children.
Dorothée LEBOURQUE
Words I have learned
Self-assessment = self-report: auto-évaluation
Fulfillment: épanouissement
To be impaired: altéré, perturbé, réduit, affaibli
A hindrance: un obstacle, une entrave ; to hinder: entraver
A touchscreen: un écran tactile
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