Untangling the Path: Challenges in Autism Diagnosis for Kazakhstani Families

Karina Nukeshtayeva, Bauyrzhan K. Omarkulov, Marina Lyubchenko, Nailya O. Delellis, Aiman Mussina, Gaukhar Kayupova, Zhaniya Dauletkaliyeva

2024

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DOI 10.54500/2790-1203-2024-3-122-19-26
Data confidence 70 medium
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Abstract

Navigating the labyrinth of Autism diagnosis in Kazakhstan can be an arduous journey for families. The scarcity of specialized professionals, coupled with limited awareness and resources, poses significant hurdles for early identification and intervention. This study aimed to offer a comprehensive examination of caregivers' experiences in navigating the process of diagnosing autism in their children within the context of Kazakhstan.Objective: The overarching aim of this study is to illuminate caregivers' experiences in navigating the diagnostic journey for Autism Spectrum Disorder in Kazakhstan, shedding light on factors influencing parental decision-making and elucidating barriers faced by families seeking diagnostic support for their children.Methods. This study involved a mixed interview of caregivers of children diagnosed with childhood autism, atypical autism, about difficulties in the process from initial concern about the child's development to formal diagnosis.Results. On average, autism concerns emerged at 1.91 years, with specialist contact at 2.19 years. Median diagnosis age was 4.51 years, taking 2.45 years from concern. Comorbidities included Attention deficit hyperactivity disorder (16.98%), psycho-speech delay (15.09%), and mental retardation (9.43%). Satisfaction with diagnosis was low (9.43%), yet 41.5% were content. Caregivers struggled with timely diagnosis, facing awareness and support deficits from specialists and society, along with logistical and psychological challenges.Conclusion.The study sheds light on the challenges faced by caregivers in Kazakhstan during the diagnosis of autism in their children. It highlights the delayed age of diagnosis, the prevalence of comorbidities, and the dissatisfaction with diagnostic assistance, underscoring the urgent need for improved access to timely and effective diagnostic services, as well as enhanced support for caregivers navigating the complexities of autism diagnosis.Keywords: autism spectrum disorder, parents’ experience, Kazakhstan.