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The Hidden Curriculum of Autism Care: Informal Learning among Clinicians and Caregivers in Kazakhstan

Foster, F.; Kanderzhanova, A.; Tolegenova, A.; Colet, P.; Stolyarova, V.; Noble, G.

2025-05-29 public and global health
10.1101/2025.05.27.25328431 medRxiv
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BackgroundAutism care in Kazakhstan continues to develop amid limited training, unclear referral systems, and uneven provider readiness. While gaps in formal infrastructure have been well documented, the informal adaptations used by families and Physicians have received less attention. AimTo explore how informal learning, peer knowledge, and role modelling shape autism diagnosis and care in Kazakhstan, by examining the everyday behaviours and improvised routines that form a hidden curriculum alongside formal systems. MethodsThis study uses secondary analysis of two datasets: semi-structured interviews with parents of autistic children (n = 10), and national survey data from parents (n = 190) and physicians (n = 110). A concept-driven thematic analysis was applied to both interview and survey responses to identify recurring informal behaviours and decision-making patterns. Descriptive survey statistics were used to contextualise these qualitative findings. ResultsParents frequently reported being left without post-diagnostic guidance, prompting them to rely on social media, peer groups, and personal networks. Physicians, especially those early in their careers, described relying on observation or mimicking more experienced colleagues in the absence of formal training. These behaviours reflect a hidden curriculum, unofficial but influential practices that shape practices that lead to inconsistent post-diagnostic guidance. ConclusionIn Kazakhstan, informal knowledge-sharing and improvisation often affect care consistency or outcomes. These practices help fill urgent gaps but also introduce inconsistencies and shift burdens onto families, especially mothers. Policy and training reforms must acknowledge and address these informal structures to improve equitable care.

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