Does autism come with a manual? : the lived experience of families with autism, across time, in Malta

Abstract

Using an Interpretative Phenomenological Analysis (IPA) as the methodological framework, this research qualitatively explores the relationship between autism, society and state-funded disability and family policies and services, and the lived experience of families with autism across different points in time, in Malta. This study is based on three main research questions which represent the main themes of this dissertation. These include: ‘what is the lived experience of parents who have children with autism?’, ‘how do parents of people with autism perceive the effectiveness of state-funded disability and family policies and services in Malta’, and ‘over the years, what was the impact of advancement and development of these policies and services on the lived experience of parents of people with autism and their families?’ The lived experience of families with autism was explored through 11 face-to-face, unstructured interviews with parents having children with autism aged 10 years and under, and 25 years and over, who were recruited through purposive sampling, snowball sampling, and through the use of social media. The parents’ perceptions show that autism does not lie within the individual with autism only, but it is an experience shared by the whole family. As per the results of the present research, by applying the social model of disability to autism as one of the study’s conceptual frameworks, individuals with autism and their families are still not fully socially included within different segments of society, such as the educational sphere and the Church. By using the theory of resilience as another conceptual framework of this study, the participant parents in this study were capable of overcoming life’s disruptive challenges due to autism and society, and positively responding to the situation of autism. When the participants had positive feelings about autism, they took an active role in teaching society about autism to eliminate stigma. A disruption in communication was also established between the state, policymakers, and the family. Although state-funded formal support has improved over time, it is not sufficient, and more knowledge is needed. The latter is vital to increase autism awareness for social inclusion and to make parents with autism and their families aware of the locally available support.