Closing the Knowledge Gap: The Importance of Autism Education for Medical Professionals in Kazakhstan, Shaped by Parents’ Experiences

Background

In Kazakhstan, families of autistic children face significant barriers in obtaining timely diagnoses and accessing appropriate care. These challenges are shaped by cultural stigma, healthcare system limitations, and insufficient professional training. Understanding parents lived experiences can help inform more effective training for medical professionals.

Methods

This qualitative study conducted semi-structured interviews with ten parents of autistic children from both rural and urban areas in Kazakhstan. Participants were recruited through social media outreach, follow-up from a prior survey, and snowball sampling. Interviews were conducted in Kazakh or Russian, transcribed, translated, and analysed thematically.

Results

Five key themes emerged: (1) cultural stigma and dismissive attitudes from medical professionals; (2) over-reliance on pharmacological treatments; (3) reliance on informal support networks; (4) limited availability and high cost of autism services; and (5) lack of specialized training among healthcare providers. These barriers contributed to diagnostic delays, emotional distress, and inconsistent quality of care.

Conclusions

Parents’ experiences reveal urgent gaps in Kazakhstan’s autism care infrastructure and professional training. Findings highlight the need for culturally adapted training for medical professionals that addresses stigma, improves communication, and promotes evidence-based, non-pharmacological interventions. Integrating parent perspectives into curriculum design can enhance service responsiveness and promote more equitable autism care across the country.

Lay abstract

Many parents of autistic children in Kazakhstan face serious challenges when trying to get a diagnosis and access care. These challenges often come from medical professionals who may not be trained to recognize the early signs of autism or who hold negative attitudes. As a result, parents are often blamed for their child’s behaviour, dismissed by doctors, or given limited information about what autism means.

This study interviewed parents from across Kazakhstan to understand their experiences with the healthcare system. Parents shared feelings of frustration, confusion, and emotional distress during the diagnostic process. They also talked about relying on online groups or other parents for support because professional guidance was often unavailable, expensive, or hard to access, especially outside of big cities.

The results showed five major barriers: stigma and blame from professionals, pressure to use medications, limited access to services, poor communication, and a general lack of autism training for doctors. Based on these insights, the study suggests that future training programs in Kazakhstan should include information about autism, communication skills, and support for families. The goal is to help medical professionals better understand autism, reduce stigma, and offer the right kind of help from the beginning.