An In-Depth Analysis of the Life Experiences of Parents with Children with Autism Spectrum Disorder

Yassıbaş, Uğur; Çolak, Aysun

doi:10.15390/eb.2019.7366

Cited by 7 publications

(7 citation statements)

References 30 publications

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“…Families addressed the difficulties they faced during dioagnosis and educational process. Similar to these findings, Yassıbaş and Çolak (2019) mentioned that families have different difficulties in the educational processes and diagnosis process of their CSN.…”

Section: Conclusion and Discussionsupporting

confidence: 72%

Educational Process of Families of Children with Special Needs from Diagnosis to Transition: Legal Regulations and Opinions on the Solution of Problems

2021

ilkonline

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Working with individuals with special needs requires a systematic team effort. Families are among the most important members of this team in the education process of individuals with special needs. The active participation of the families of children with special needs (CSN) in all aspects of the special education process is indispensable for their children to succeed in academic and social fields. However, studies on the awareness of their families about the legal rights of CSN are very limited. The aim of this study is to examine the opinions of the families of CSN about their rights in the education and training processes and the solutions of the problems they face. Qualitative research design was used in the research and the data were analyzed by content analysis method. The research data were collected through semi-structured interviews. The results of the research revealed that parents of CSN have limited knowledge about the legal rights of their children and encounter problems with special education services.

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Section: Conclusion and Discussionsupporting

confidence: 72%

Educational Process of Families of Children with Special Needs from Diagnosis to Transition: Legal Regulations and Opinions on the Solution of Problems

2021

ilkonline

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“…They felt embarrassed so some parents stopped going out with their children to avoid the uncomfortable interactions that they encountered when their children did not follow social rules 20 . Similar results were reported in a study by Yassibas and Colak as half of the participants said that they did not utilize public transportation to protect themselves from the labelling attitudes of the community but they said this restricted their social life and isolated them from others 21 .…”

Section: Introductionsupporting

confidence: 84%

A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder

2022

Sci Rep

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Experiencing stigma related to having a child with autism spectrum disorder (ASD) can be difficult and is detrimental to parent well-being. Since the research on stigmatized experiences among parents of children with ASD in non-Western communities is limited, this qualitative study examined the experiences, reactions and impacts of stigma on parents of children with ASD in Hong Kong. In-depth interviews were conducted with 54 Chinese parents/caregivers of children with ASD aged between 35 and 73 years old. Data were analyzed using an inductive approach. The participants reported stigma which stemmed from negative labelling of their children by schools and healthcare professionals, bullying by peers, stereotypes of ASD and stigma linked to autistic children’s behavior in the community. The reactions of participants towards stigmatization were classified into internalizing reactions including apologizing, ignoring and concealing ASD and externalizing reactions such as fighting back. The participants also reported impacts of stigma on both personal and emotional levels. The results point to the urgent need for the government to allocate resources and make concerted efforts to reduce stigma by educating the community to foster more positive attitudes towards individuals with ASD and offer support and counselling services to parents.

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“…In the pre-diagnosis period, normalization of the child’s problems or deny it by relatives causes a delay in the specialized follow-up of the child’s problem and early intervention. Studies in Western countries have not reported similar ones, but studies by Desai et al have reported similar experiences about Indian parents ( 4 , 8 , 33 ). After parents decide to pursue their child’s problem professionally, Iranian parents do not have access to a specific reference for counseling and diagnosis.…”

Section: Discussionmentioning

confidence: 95%

“…The findings of this study about the treatment process are consistent with previous studies stating services accessibility, expensive treatments, and limited funding or insurance coverage as issues in the treatment pathway of children with autism ( 11 ). Also, like Turkish parents in the Yassıbaş study, Iranian parents were not satisfied with the quality of services provided in the medical, rehabilitation, and educational centers ( 33 ). Service providers in public and private centers can increase the quality of services by providing qualified specialists from different fields in their centers, proper client management, providing appropriate equipment and space, paying attention to the parent’s counseling needs, and continuous training of therapists and educators and monitoring their performance ( 14 , 24 , 25 , 27 ).…”

Section: Discussionmentioning

confidence: 99%

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

Jamshidian,

Hojati Abed,

Sourtiji

et al. 2023

ijph

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Background: Autism is a lifelong condition that seriously affects many aspects of children's and families' lives. The experience attained by living with a child with autism can be a valuable source of information to provide support and satisfactory services to children with autism and their families. We aimed to investigate the lived experiences of Iranian parents of children with autism. Methods: The search was conducted in PubMed, Web of Science, Embase, Google Scholar, CINAHL, PsychInfo, SID, and Magiran until Nov 2021. Two reviewers screened the articles, applied inclusion criteria, critically evaluated articles using the Critical Appraisal Skills Program (CASP), and extracted study details according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist. Thematic synthesis was used to analyze included studies. Results: From 2772 articles in the initial search, sixteen studies entered the final analysis. Four themes emerged, including treatment-related lived experience, individual lived experience, social lived experience, and occupational lived experience. Iranian parents of children with autism are confronted with negative experiences, including inaccurate diagnostic processes, lack of adequate support at the diagnosis time, low-quality treatment, psychological problems, and concern about the child's future. Also, Parent's experiences showed family problems, stigma, and problems with doing occupations. Conclusion: Practitioners, policy-makers, and regulatory organizations should urgently consider issues mentioned in the parents' experiences to provide proper healthcare services for children with autism and their families.

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An In-Depth Analysis of the Life Experiences of Parents with Children with Autism Spectrum Disorder

Cited by 7 publications

References 30 publications

Educational Process of Families of Children with Special Needs from Diagnosis to Transition: Legal Regulations and Opinions on the Solution of Problems

Educational Process of Families of Children with Special Needs from Diagnosis to Transition: Legal Regulations and Opinions on the Solution of Problems

A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder

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

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