Understanding the Experiences of Parents in Raising Children With Autism Spectrum Disorder: A Qualitative Study

Younesi, Seyed Jalal; Hosseinpour, Amirhossein; Azkhosh, Manoochehr; Safi, Mohammad Hadi; Biglarian, Akbar

doi:10.32598/irj.22.1.433.12

Volume 22, Issue 1 (March 2024) Iranian Rehabilitation Journal 2024, 22(1): 35-46 | Back to browse issues page

‎ 10.32598/irj.22.1.433.12

Ethics code: IR.USWR.REC.1399.041

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Younesi S J, Hosseinpour A, Azkhosh M, Safi M H, Biglarian A. Understanding the Experiences of Parents in Raising Children With Autism Spectrum Disorder: A Qualitative Study. Iranian Rehabilitation Journal 2024; 22 (1) :35-46
URL: http://irj.uswr.ac.ir/article-1-1729-en.html

Understanding the Experiences of Parents in Raising Children With Autism Spectrum Disorder: A Qualitative Study

Seyed Jalal Younesi¹

, Amirhossein Hosseinpour ^*¹

, Manoochehr Azkhosh¹

, Mohammad Hadi Safi²

, Akbar Biglarian³

1- Department of Counseling, School of Behavioral Sciences, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
2- Department of Psychology, Faculty of Humanities & Social Sciences, Ardakan University, Yazd, Iran.
3- Department of Biostatistics and Epidemiology, School of Rehabilitation Sciences, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.

Abstract: (1867 Views)

Objectives: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that includes abnormal communication, repetitive and limiting interests, and social dysfunction. This study aimed to identify the experiences of parents in raising children with ADS in Iran.
Methods: A total of 18 parents of children with ASD were selected by purposive and convenient sampling method to participate in the study. To collect data, in-depth semi-structured interviews were conducted. The text of the interviews was analyzed using interpretative phenomenological analysis.
Results: Two main themes of positive and negative experiences were identified in the analysis. In the positive experiences two sub-themes of “continuing education and acquiring spirituality” and “increasing life skills” and in the negative experiences five sub-themes of “reduction of communication and lack of social support,” “improper treatment with the child with ASD,” “feeling ashamed,” “lack of adaptability,” and “being judged by others” were identified.
Discussion: These findings can provide a deep understanding of the experiences of caring parents of children with ASD in Iran. In addition, the results of this study can provide valuable information to researchers, clinicians, etc. to indicate the specific needs of families who care for children with ASD.

Keywords: Autism spectrum disorder, ASD, Parents, Child, Care

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● The findings of this study indicated that there are two main themes of positive and negative experiences for parents in raising ASD children. In the positive experiences two sub-themes of “continuing education and acquiring spirituality” and “increasing life skills” and in the negative experiences five sub-themes of “reduction of communication and lack of social support,” “improper treatment with the child with ASD,” “feeling ashamed,” “lack of adaptability,” and “being judged by others” were identified.

Plain Language Summary

Autism spectrum disorder (ASD) is a type of neurodevelopmental disorder. This disorder includes defects in interaction and establishing a social relationship, difficulty in processing perception, and repeated behaviors. The term “spectrum” indicates that symptoms are different from person to person and vary in type and intensity. The chain or spectrum of ASD symptoms in individuals varies from mild to severe. In the term, those who experience mild to moderate symptoms have Asperger’s symptoms. However, there is no official category for diagnosis. Autistic people seem apathetic and have difficulty connecting emotionally with others. Their response to sensory experience is also unusual. For example, they will be distracted by the sound of a dripping faucet. Increasing the prevalence of autism requires a greater focus on parenting experiences in caring for these children. The special needs of autistic children affect the child and the lives of other family members involved in the child’s upbringing. Parents of children with ASD experience severe stress during the care of these children. Given the high rates of stress and depression among parents of children with ASD and their negative effects on family relationships in life and the costs that are imposed on families and society, conducting such a study to identify parents’ experiences is important. Results of this study showed that having a child with ASD sometimes gives the parents a hard time and sometimes is good for them. It means parents have both negative and positive experiences in raising a child with ASD. In the positive experiences two sub-themes of “continuing education and acquiring spirituality” and “increasing life skills” and in the negative experiences five sub-themes of “reduction of communication and lack of social support,” “Improper treatment with the child with ASD,” “feeling ashamed,” “lack of adaptability,” and “being judged by others” were identified

Article type: Original Research Articles | Subject: Psychology
Received: 2022/07/16 | Accepted: 2023/10/11 | Published: 2024/03/1

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