An exploratory study of the experiences of care-givers of children with autism in KwaZulu-Natal.

Abstract

The term ‘autism’ was first used in 1906 to describe a condition in adults. The term was later used again in 1943 and 1944 by Leo Kanner and Hans Asperger respectively who used the term to describe symptoms found in children. Autism was a relatively unknown condition until the 1980s and 1990s when research on the condition began to increase. The increase in research and availability of information lead to a better understanding of autism and related disorders and there has since been an increase in the number of people diagnosed with 1 in 150 children being diagnosed with autism in South Africa. Autism manifests before 36 months of age with males being four times more susceptible to Autism Spectrum Disorders than females. Research available on autism and related conditions has focused largely on scientific studies in the attempt to discover a cause for the disorder and a cure for it. In recent years there has been an increase in parents writing about their experiences with their children who have autism, however very little literature is available on non-kin care-givers and their experiences in working with children with autism. This thesis provides a view into the world of the non-kin care-giver through research carried out at two school sites in the KwaZulu-Natal region. This research through participant observation and interviews aims to fill the gap in the literature regarding non-kin care-givers of children with autism. The study looks at why non-kin care-givers choose to work with children with autism, the stress and challenges associated with working with children with autism, the highlights and personal impacts of working with children with autism and why non-kin care-givers continue to work in this field. In addition this thesis looks at the experiences of parents of children with autism and as such aims to describe a symbolic journey that parents and non-kin care-givers embark on with autism. In order to understand this symbolic journey this thesis has used the theoretical framework of van Gennep’s (1960) Rites de Passage and Goffman’s (1969) Spoilt Identity and Stigma, analysing each stage of the participants involvement in relation to the concepts of separation, transition or liminality and finally incorporation. By using these theories to analyse the research findings this thesis argues for the formation of a group identity through shared experiences and understandings of autism and in this way for the creation of an Autism Community.