Lived Experience of the Social Suffering of the Parents with Autism Spectrum Disorder (ASD) Child

Abstract

Introduction : The current study is performed to identify the parents with an autistic child’s lived experience of social suffering. Method : The current study applies qualitative method with the thematic analysis approach. Purposive sampling is performed on parents of the children with autism spectrum. Thirteen parent were interviewed about 45 to 70 minutes. Participants include four fathers and nine mothers with a child who has diagnosed with autism. The data collection method was a semi-structured in depth inter -view. Data analysis process was started from the first in terview via MAXQDA software and coding is perfumed after each interview. Following that, Thematic analysis is used to study the data. Finally, the lived experience findings were categorized in main and sub themes. In this study, four criteria of Guba and Lincoln were used to increase scientific accuracy. Findings : 155 codes were extracted from interviews and those codes were categorized in five main themes and six sub themes. Main themes include: diagnosis process، parents’ everyday problems، family’s presence in the community، support services and financial problems. Discussion : the results have shown that parents of a child which is in autism spectrum facing excessive suffering and difficulties in various aspects of their life. The chal lenges begin in early stages of diagnosis procedure and extend to every aspect of their life. Abstract Introduction: ASDs are classified as developmental neurological group disor -ders, which cause significant deficiencies in social interaction and communication. Restricted and repetitive behaviors are also present. Raising a child with ASD is a difficult experience, and it negatively affects both the child and his/her family. The parents of the child with ASD has are the ones who have the most interaction with him/her, and they suffer from ASDS challenges more than other relatives. De creasing parenting efficiency and increasing their physical and psychiatric prob lems are some examples of those challenges. The studies reveal that parents and mothers in particular, experience higher levels of stress compared to the ones with normal children. For many years, most of the studies have focused on the effects of parents on children with ASDs, but recent research have concentrated on the effects of children with ASDs on their parents’ lives. The present research aims to discover the ASDs children’s parents’ sufferings and problems thorough the study of their lived experiences. Method: The current study applies qualitative method with the thematic analy sis approach. Purposive sampling is performed on parents of the children with autism spectrum. In this study, 13 interviews were conducted with parents, each of which had lasted between 45 to 70 minutes. The participants were four fathers and nine mothers with a child diagnosed with ASD. The data collection instru ment was a semi-structured in depth interview. Data analysis process started from the first interview via MAXQDA software and coding was perfumed after each interview. Data were eventually analyzed by thematic analysis method. Finally, the outcomes of parents’ lived experiences were documented in the primary and secondary themes. In this study, four criteria of Guba and Lincoln were used to increase scientific accuracy. Findings: The data were categorized into five main themes. The first category was on the diagnosis process. The sub-themes included pre-diagnosis confusion and the different medical diagnoses. The confounded parents were trying to understand the cause of their child’s abnormal behavior, which was the first hard and tough step of medical diagnose process. There is no specific reference available for par ents to instruct them how to setup a health record and ease their journey. All the participants complained about the difficulty of that period. Some of