Autism spectrum disorders: experience of parents in Kazakhstan.

A study of 390 families with autistic children in Kazakhstan found that most families struggle financially to get help for their children. Nearly three-quarters said government support wasn't enough to cover education and treatment costs. Many parents, especially mothers, had to quit their jobs or change their work schedules. Single parents and families without their own homes faced extra challenges. Urban families generally had better resources than rural families.

This cross-sectional study examined the experiences of 390 parents of children with autism spectrum disorders (ASD) across Kazakhstan, including urban and rural regions. The research identified significant challenges in accessing care and support services. Key findings revealed that 73.3% of families reported insufficient state financial support, particularly for education costs in correctional centers and treatment expenses. Employment impacts were substantial, with 25.4% of parents (especially mothers) leaving their jobs and 18.8% changing employment arrangements.

Urban families demonstrated higher income and education levels compared to rural families. About 16.3% were single-parent households, and one-third did not own their homes. The study highlights critical gaps in Kazakhstan's autism support system, emphasizing financial burden and limited specialist access as primary barriers to comprehensive care.

Results highlight urgent need for policy reforms in Kazakhstan's autism support system. Findings suggest requirements for increased financial assistance, employment protections for caregivers, enhanced rural service access, and comprehensive support systems. Geographic and socioeconomic disparities require targeted interventions to ensure equitable autism care access.

Cross-sectional design limits causal inferences. Study methodology not fully described in abstract. Sample representativeness unclear. No comparison groups included. Specific measurement tools and statistical analyses beyond chi-square not detailed.

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.

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. 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. 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.