FAMILY EXPERIENCE OF COPING AND ADAPTATION FOR HAVING CHILDREN WITH AUTISM SPECTRUM DISORDER: THE CASE OF JOY AUTISM CENTRE

Abstract

The research study focuses on family experience of coping and adaption for having children with autism spectrum disorder the case of joy autism center. The study adapted the qualitative approach and the research design adopted for this study was phenomenological research. To achieve the objective of the study from the total populations 89 families out of those, 15 responses were valid for analysis. The samples of the study were selected through none probability sampling method with purposive sampling was used for the study. In-depth interview, open ended questionnaire and observation were used to obtain primary data collection and thematic analysis was used to analyze the data. The results of the interpretive phenomenological analysis containing nine themes indicated those families’ perceptions towards the cause of autism were based on spiritual explanations such as devil spirit and evil eye possessions. All of the families were not aware of autism before receiving the diagnosis and most of the perceptions of families were influenced by family members, neighbors and friends. The main challenges of families found in this study were psychological problems, difficulty to manage the family unit, economic strains, social stigma and labeling and lack of access to facilities and services for their children. Multifaceted social stigma and labeling, lack of facilities, services and lack of formal and informal support systems were the most pressing issues that impacted on the psychosocial and financial wellbeing of the families which aggravated their challenges in taking care of their children with autism. Based on the finding of the study, it was recommended that the involvement all segments of a society and the government is imperative to provide holistic support for families, their children and the whole family.