Parenting Under Pressure: The Experiences of Parents/Guardians of Autistic Children in Kerala, India

This Ph.D. thesis focuses on the first-hand, ground-level experiences of parents and guardians of autistic children in the State of Kerala, India. It explores the barriers faced by parents/guardians in relation to social interactions, raising an autistic child, and accessing services. Thirty-two semi-structured face-to-face interviews were conducted with parents/guardians of children (across the ‘autism spectrum’) aged ten and below, over a six-month period. All the interviews were completed before the onset of the coronavirus pandemic in India. Those who participated in the project identified with diverse socio-demographic backgrounds. The perceptions of parents/guardians enabled a comprehensive analysis of parenting experiences and the factors responsible for creating disabling barriers and disparities in terms of privilege.

Using the social relational model of disability as a tool, this thesis extended family debates and makes an original contribution by arguing that along with their autistic children, parents/guardians are disabled due to barriers arising from unequal social interactions which undermine their psycho-emotional well-being. This dissertation finds that the ‘impairment effects’ associated with the autistic child can create some restrictions in daily caregiving responsibilities. However, impairments do not constitute disability and are not the primary barriers in parenting. In order to understand the complex experiences of parents/guardians, this project has employed an intersectional approach to analyse the influence of factors including gender roles, access to resources, and caste/tribe status on parental perceptions of barriers and privilege. These concepts are rarely applied in the Indian sociological literature to comprehend the experiences of parenting autistic children, and so will provide a fresh addition to Indian sociology. Thus, by linking broad literature from disability studies and sociology with the generated data from the fieldwork that was conducted, this thesis contributes to Indian sociological literature by producing a qualitative, sociological study on the experiences of parenting autistic children in India.