Living with Autism in Macao – The Experiences of Families Living with Autism

Abstract

The purpose of this project was to explore the issues of living and coping with autism in Macao focusing on the experiences and perceptions of families of a child living with autism. The researcher used the Collage Life-story Elicitation Technique (CLET) to collect rich narratives from three mothers and three elder sisters of children living with autism. An interpretive phenomenological analysis was used to examine the data for narrative performances in the non-verbal (collage) and verbal (stories) narratives and to understand the themes related to emotional aspects and social support for the families living with autism. Analysis of the interview contents showed that mothers of the families are particularly stressed, and overwhelmed by strong emotions and denial of the loss of the 'perfect child.' They also experience a lack of paternal support in their families. The siblings in the families are seeking for the attention due to their mother’s over-involvement with the child living with autism, and experience a sense of uncertainty and insecurity. Future research may focus on the emotional and stress levels of families living with autism on a larger scale, and explore the influence of culture on family roles and functioning. Societal support should emphasize enhancing the professional and medical system, and encourage involvement of fathers in the caring for their children living with autism.