Parents’ journey into the world of autism

Abstract

Background. Autism Spectrum Disorder (ASD) is a developmental disability that results in an impairment in an individual’s social interaction and communication, as well as restricted, repetitive and stereotyped patterns of behaviour. Children with ASD display difficulties in the areas of social as well as communicative behaviour. Parents, caregivers and family members are the main communication partners of children with ASD. Living with a child with ASD can result in changes within a family system. Objective. To describe the challenges and experiences faced by families in their interaction with their child with ASD, caregiver coping strategies and the success of these strategies, and the generalisation and carryover of therapeutic strategies provided by a speech language pathologist (SLP). Methods. A qualitative descriptive research design was selected to explore the objectives of the study. Ten participants were recruited; all participants were parents of a child with ASD attending Learners with Special Educational Needs School in Gauteng, South Africa. Data were collected through a semistructured face-to-face interview survey comprising open- and closed-ended questions, and were analysed using thematic content analysis. Results. The results revealed five main themes, namely communicative challenges, family experiences, communicative coping strategies, speech and language therapy services and strategies provided by the SLPs. Communicative challenges were experienced by parents of one child with ASD. The communication and behaviour of children with ASD were found to affect the daily functioning of the family. The majority of parents reported not learning a new mode of communication, but rather adapting and adjusting to the communication of their child. Communicative coping strategies were required for novel social settings. There were mixed responses with respect to parent’s abilities to access and learn new communicative coping strategies. Speech and language therapy assisted in improving the child’s communication skills, while strategies provided by SLPs were explained to be effective even though generalisation of strategies was limited. Conclusion. This study concluded that parents and children with ASD experience challenges in communication and interaction. The family systems approach as well as the World Health Organization’s International Classification of Impairments, Disabilities and Handicaps are two functional frameworks that can assist SLPs to provide intervention to children with ASD.