Autism spectrum disorders: experience of parents in Kazakhstan

Abstract Background Autism spectrum disorders (ASD) is a neurodevelopmental disorder manifested by a violation of the lack or deficiency of communication, socialization and repetitive behavior. The prevalence of ASD is rising globally. Early identification of children and comprehensive assistance ar...

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Main Authors: Aziza Imamatdinova, Aizhan Samambayeva, Nazgul Akhtaeva, Laura Kozhageldiyeva, Zhanara Sabyrdilda, Gulnara Kapanova, Lyazzat Kosherbayeva
Format: Article
Language:English
Published: BMC 2025-08-01
Series:BMC Public Health
Subjects:
Online Access:https://doi.org/10.1186/s12889-025-23764-3
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author Aziza Imamatdinova
Aizhan Samambayeva
Nazgul Akhtaeva
Laura Kozhageldiyeva
Zhanara Sabyrdilda
Gulnara Kapanova
Lyazzat Kosherbayeva
author_facet Aziza Imamatdinova
Aizhan Samambayeva
Nazgul Akhtaeva
Laura Kozhageldiyeva
Zhanara Sabyrdilda
Gulnara Kapanova
Lyazzat Kosherbayeva
author_sort Aziza Imamatdinova
collection DOAJ
description Abstract Background Autism spectrum disorders (ASD) is a neurodevelopmental disorder manifested by a violation of the lack or deficiency of communication, socialization and repetitive behavior. The prevalence of ASD is rising globally. Early identification of children and comprehensive assistance are critical to reduce the burden. The purpose of our work is to study the current practice and experience of parents of children with ASD in obtaining care for their children and identify future directions for improving systemic care in Kazakhstan. Methods The multidisciplinary team of specialists, including parents of children with ASD were involved in developing the questionnaire that aimed to identify the gaps in complex care for children with ASD. A cross-sectional study was conducted for 390 parents of children with ASD from all regions, including urban and rural areas of Kazakhstan. Statistical analysis was performed using the chi-square test. Results Parents of children with ASD living in cities have higher income and education level compared to those living in rural areas. About 16.3% of the participants belonged to single-parent families, and a third of the families did not own their home. In most cases, only one parent (63.3%) was employed. Additionally, 25.4% of parents, especially mothers, had to quit their jobs, while 18.8% opted to change employment areas or shifts. Insufficient state financial support was reported by 73.3% of respondents, particularly with regard to the costs of education in correctional centers and child treatment, which were statistically significant. Respondents also highlighted the needs for legal advice. Conclusion This study offers valuable insights into the current state of care and support for children with ASD in Kazakhstan. The findings emphasize the challenges faced by families in securing appropriate care for their children, particularly in relation to financial burden, limited access to specialists, and the need for comprehensive support systems.
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institution Kabale University
issn 1471-2458
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spelling doaj-art-152099ad7eea4cd6815768d6c0630baf2025-08-20T04:02:45ZengBMCBMC Public Health1471-24582025-08-0125111210.1186/s12889-025-23764-3Autism spectrum disorders: experience of parents in KazakhstanAziza Imamatdinova0Aizhan Samambayeva1Nazgul Akhtaeva2Laura Kozhageldiyeva3Zhanara Sabyrdilda4Gulnara Kapanova5Lyazzat Kosherbayeva6Asfendiyarov Kazakh National Medical UniversitySDU UniversityAsfendiyarov Kazakh National Medical UniversitySDU UniversityAsfendiyarov Kazakh National Medical UniversityAl-Farabi Kazakh National UniversityAsfendiyarov Kazakh National Medical UniversityAbstract Background Autism spectrum disorders (ASD) is a neurodevelopmental disorder manifested by a violation of the lack or deficiency of communication, socialization and repetitive behavior. The prevalence of ASD is rising globally. Early identification of children and comprehensive assistance are critical to reduce the burden. The purpose of our work is to study the current practice and experience of parents of children with ASD in obtaining care for their children and identify future directions for improving systemic care in Kazakhstan. Methods The multidisciplinary team of specialists, including parents of children with ASD were involved in developing the questionnaire that aimed to identify the gaps in complex care for children with ASD. A cross-sectional study was conducted for 390 parents of children with ASD from all regions, including urban and rural areas of Kazakhstan. Statistical analysis was performed using the chi-square test. Results Parents of children with ASD living in cities have higher income and education level compared to those living in rural areas. About 16.3% of the participants belonged to single-parent families, and a third of the families did not own their home. In most cases, only one parent (63.3%) was employed. Additionally, 25.4% of parents, especially mothers, had to quit their jobs, while 18.8% opted to change employment areas or shifts. Insufficient state financial support was reported by 73.3% of respondents, particularly with regard to the costs of education in correctional centers and child treatment, which were statistically significant. Respondents also highlighted the needs for legal advice. Conclusion This study offers valuable insights into the current state of care and support for children with ASD in Kazakhstan. The findings emphasize the challenges faced by families in securing appropriate care for their children, particularly in relation to financial burden, limited access to specialists, and the need for comprehensive support systems.https://doi.org/10.1186/s12889-025-23764-3Autism spectrum disordersHealth policyParentsCareKazakhstan
spellingShingle Aziza Imamatdinova
Aizhan Samambayeva
Nazgul Akhtaeva
Laura Kozhageldiyeva
Zhanara Sabyrdilda
Gulnara Kapanova
Lyazzat Kosherbayeva
Autism spectrum disorders: experience of parents in Kazakhstan
BMC Public Health
Autism spectrum disorders
Health policy
Parents
Care
Kazakhstan
title Autism spectrum disorders: experience of parents in Kazakhstan
title_full Autism spectrum disorders: experience of parents in Kazakhstan
title_fullStr Autism spectrum disorders: experience of parents in Kazakhstan
title_full_unstemmed Autism spectrum disorders: experience of parents in Kazakhstan
title_short Autism spectrum disorders: experience of parents in Kazakhstan
title_sort autism spectrum disorders experience of parents in kazakhstan
topic Autism spectrum disorders
Health policy
Parents
Care
Kazakhstan
url https://doi.org/10.1186/s12889-025-23764-3
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AT nazgulakhtaeva autismspectrumdisordersexperienceofparentsinkazakhstan
AT laurakozhageldiyeva autismspectrumdisordersexperienceofparentsinkazakhstan
AT zhanarasabyrdilda autismspectrumdisordersexperienceofparentsinkazakhstan
AT gulnarakapanova autismspectrumdisordersexperienceofparentsinkazakhstan
AT lyazzatkosherbayeva autismspectrumdisordersexperienceofparentsinkazakhstan