Making Lived Experiences Matter: Understanding The Journey of Mothers Of Children with Autism In India

Lived experiences have become increasingly significant within research in mental health, particularly for working on service reforms from a human rights perspective. The vulnerabilities within which women are positioned in a patriarchal society is further deepened by the extensive responsibility placed on her as she navigates motherhood. While traversing this role, meeting the challenges of early parenting, in addition to balancing her authentic self and her choices with that of her attachment with the child and family, she is also expected to ensure that the child meets the norms of development as set by the society. In such a scenario, when the child gets a diagnosis of autism, - that comes with no known single cause or cure, and with myriad interventions and approaches, the experiences of mothers of children with autism stand out from that of other mothers. Their experiences of vulnerability and of overcoming the same in the Indian context, along each phase of their journey with their child, forms the basis of this thesis. It aims to answer the question of how lived experiences of mothers of children with autism can be understood and supported so as to enable sustainable long-term solutions. The experiences were studied in four phases of her journey: From birth to noticing first differences, during the diagnostic process, early intervention, and further during the whole schooling phase. Findings show how the experiential knowledge of mothers of autistic children, despite their importance and prominence, is often not included in the rehabilitation process, in the context of Southern India. It is shown how vulnerability is a construct that is compounded and acts within multiple layers which include the lack of knowledge and lack of coordinated and collective support systems. It shows how the existing support predominantly focus on fitting the child into a ‘norm’ that most often disregards the dignity of the mother and the child, leading to human rights violations all through her journey. The thesis also emphasizes the disconnect of these experiences while framing policies that aim to improve her quality of life. Maternal knowledge and how it can add value to the diagnostic and intervention process and aid agency in mothers is shown. It is also shown how the mother’s agency, if not blocked by various societal barriers, has a strong potential for advocacy and social change, with mechanisms that can be replicated.