The experiences of families raising autistic children

Abstract

BACKGROUND: Conditions and needs of autistic children have impacts on both the children and the family members who have crucial roles in raising the child. The prevalence of autism is increasing, and this fact makes it necessary to focus more on experiences of parents who have children with autism spectrum disorder (ASD). Hence, this study aimed to reflect the experiences of parents who have autistic children. MATERIALS AND METHODS: The present study was a qualitative research with phenomenology approach which was conducted using content analysis approach. Participants were 14 parents with ASD children in Ahvaz, and they were included based on purposive sampling method. To gather the required data, semi-structured interviews were formed. Data analysis was performed by Colaizzi's seven-step method. RESULTS: Fifty-four conceptual codes were extracted from interviews of ASD children parents. Parents of these children had two main experiences: first family related and second education and treatment problems. Family problems included three categories (financial, psychological, and family relationships). Education and treatment was categorized into three (schooling, transporting, and quality in facilities). CONCLUSIONS: Problems mentioned by parents of autistic children highlight the need for providing training and counseling services as well as emotional supports from both society and government. Planning and implementing supportive plans empower parents to strategically face problems and eventually improve their life quality and mutual understanding.

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

“…Iranian parents of children with ASD experience depression at various stages, including after diagnosis, after realizing that the disorder is incurable, and after ineffective treatment measures. Anxiety is another psychological problem expressed by parents ( 20 , 22 , 25 , 26 , 28 , 29 ).…”

“…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 ).…”

Exploring Challenges and Needs of Parents Providing Care to Children with Autism Spectrum Disorders: A Qualitative Study

“…Parents of children with autism are imposed with higher health costs than parents of children with other disabilities (8). Studies have shown that treatment costs for children with ASD are three times higher than that for normal children at the same age, as well as that for children with other mental and physical disabilities (17).…”

What do parents of children with autism spectrum disorder think about their quality of life? A qualitative study

“…The term autism is used for a wide range of problems related to social skills, repetitive behaviors, speech challenges, and nonverbal communication. [ 1 ] Studies on the prevalence of this disorder in recent years show an upward trend. [ 2 3 4 5 ] Regardless of the reasons behind this increasing trend (expanding diagnostic criteria, raising awareness about the disorder, and better diagnosis) being diagnosed with autism spectrum disorder (ASD) can have several negative effects on different aspects of the life of a person with ASD and their family and community.…”