Parental Experiences of the Communication Development of a Child with Autism Spectrum Disorder: an Interpretative Phenomenological Analysis
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Background: Impairments in communication are considered one of the central features of Autism Spectrum Disorder (ASD), a complex neurodevelopmental disorder. It is held that even high-functioning individuals with ASD will experience difficulty in conversation due to difficulties with social and nonverbal aspects of communication. ASD has been described as a ‘hot topic’ in contemporary research, and the effects of ASD on communication are well-documented. Studies into parental experience are also increasing in number, showing a need for research in this area. However, literature relating to parental experiences of communication development in ASD is highly limited. Aims: The study’s aim was to explore parents’ experiences of the communication development of their children who had been diagnosed with ASD. Parents’ accounts of their experience of witnessing this development were analysed and interpreted in order to learn about how parents made sense of this lived experience, and to explore what meaning they attached to the phenomenon of communication development. The study also attempted to uncover parental values, beliefs, and knowledge relating to communication and its development. Methods & Procedures: Three participants were recruited from a support group for parents of children and adult with ASD. Participants were three mothers of young adults who were aged between 17 and 22. A qualitative research design was adopted, using semi-structured interviews to elicit rich data about lived experience from participants, related to the research aims. Participants were interviewed individually, and responded to open-ended questions relating to their child’s communication development and diagnosis. In order to conduct in-depth analysis of the data, an Interpretative Phenomenological Analysis (IPA) approach was chosen to uncover salient themes relating to the parents’ experiences. Outcomes & Results: Five superordinate themes, each containing a number of subordinate themes, emerged from analysis of the data and were evident across all three transcripts. These superordinate themes were: the parental role; perception of the child and their experience; ‘the big world out there’, or the influence of the outside world; journeys; and competing priorities. Conclusions & Implications: The study has several key findings and implications for clinical practice. Analysis of the data suggested the parents’ felt the young people with ASD did not have a static identity, but were conceptualised as either ‘normal’, ‘different’ or ‘disabled’ depending on which section of society they were compared to; these individuals were seen as ‘different’ from typically developing peers, but ‘normal’ within the ASD community. The sense of a prominent ASD community was another key finding. Interpretation of the data revealed a distance between the world of the ASD community and ‘the big world out there’ which encapsulates society and professionals such as teachers and SLTs. In order for clinicians to give effective person-centred care, this gap between worlds must be lessened. Finally, this study concludes that communication is not perceived as a priority by these parents, while mental health and issues surrounding diet are high priorities. This low priority should be taken into account by SLTs when considering whether they are the right person to offer the right care at the right time. Further research could usefully add to the knowledge about parental priorities relating to ASD.
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