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 interview. Data analysis process was started from the first interview 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 challenges begin in early stages of diagnosis procedure and extend to every aspect of their life.

Lived Experiences of Iranian Parents of Children with Autism Spectrum Disorder: A Systematic Review

“…However, some share these issues with their relatives. Relatives usually try to make the child’s problem seem normal or deny the child’s problem ( 14 , 18 , 19 ).…”

“…Some others have made quick diagnoses without an accurate assessment, have not used a specific test or protocol for diagnosis, and finally have different opinions about the child’s problem. Also, parents have stated that they did not give sufficient explanation and necessary support from the diagnostician ( 14 , 19 , 20 – 22 ).…”

“…Public misbehavior in society causes parents of children with autism to experience different types of stigmas. Isolation, feelings of shame, and pity are other consequences of inappropriate behaviors in society toward these children and their families ( 14 , 19 , 20 , 22 , 25 , 27 , 29 ).…”

“…Parents of children with autism have described transportation as a barrier to community presence for themselves and their children. The unfit public transportation system, and not accepting a child with autism without a companion in transport vehicles are some issues mentioned by parents ( 19 , 20 , 25 – 27 ).…”

“…Parents’ experience indicates that children with ASD experience occupational challenges mainly in activities of daily living (ADL), sleep, leisure, and education ( 14 , 19 , 23 , 25 , 29 , 32 ). The field of education has received more attention from former researchers and parents.…”