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|Title:||From Doing to Being : The Lives of Mothers of Adolescents with Autism Spectrum Disorder (ASD)|
|Keywords:||School of Human Ecology|
Autism Spectrum Disorders
|Abstract:||Autism is a complex developmental disorder with a variety of communication and behavioural challenges which places multiple demands on primary caregivers, most commonly mothers. Past research in India has focused on the experiences of parents when their child is diagnosed with autism, and on engaging interventions in early and middle childhood. An exploratory study with a qualitative approach to inquiry was conceptualized to explore the process of caregiving for mothers of adolescents with Autism Spectrum Disorder (ASD). Nine mothers were interviewed using an in-depth interview guide and the data was analysed using thematic analysis. Drawing from participants’ experiences, the study proposes a model which describes the various phases of their caregiving process. The participants faced unique concerns in every phase, which resulted in an emotional response along with meaning-making and initiating action to address these concerns. Findings revealed that the adolescence period was challenging due to the various hormonal changes that the children underwent and the difficulties the mothers experienced in dealing with these changes. In addition to this, the existing interventions for their children were often found to be lacking in terms of quality and consistency to address the concerns of adolescents with ASD. The impact of the caregiving process on participants’ identities, how class mediates experiences of caregiving, factors of resilience and need for advocacy for inclusion have been discussed . The study emphasizes the need for improved training of professionals working with adolescents and their families and increased academic and policy attention on the lives of individuals with ASD in adolescence and adulthood. Key words: autism spectrum disorder, adolescents, caregiving, qualitative research, mothers|
|Appears in Collections:||M.Phil.|
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