The Prevalence of Autism Spectrum Disorders in the Russian Federation: A Retrospective Study

Abstract

BACKGROUND: There has been an increase in the prevalence of autism spectrum disorders (ASD) worldwide over the past decades. Studies have shown that the number of confirmed diagnoses correlates with the awareness of the disorder among the general public and the professional community, in particular, as well as the availability of formalized screening procedures and modern medical and educational tools for families raising children with ASD in regional population centers. Thus, comparing autism prevalence rates in regions of the same country helps identify regions with limited access to diagnostic services and adequate medical care. AIM: To estimate the overall number of individuals meeting the diagnostic criteria for ASD in Russia and determine the differences in the number of registered individuals with established diagnosis in the constituent territories of the Russian Federation. METHODS: We conducted a retrospective, observational study and analyzed data from official statistical reports (form 12 Information on the Number of Diseases Registered in Patients Residing in the Service Area of a Healthcare Institution for 20202021). RESULTS: A steady upward trend in the number of individuals with autism has been observed since 2014 in the Russian Federation as a whole and in the federal districts, although the prevalence rates differ from the global median prevalence of ASD (all-Russian figure by almost 40 times). In addition, regional differences (by 104.5 times) in the frequency of the diagnosis have been revealed: from a minimum of 1.7 to a maximum of 177.7 per 100,000 population. The percentile distribution of the number of individuals with ASD that are followed-up at healthcare facilities in the constituent territories of the Russian Federation was in the interquartile range (2575th percentile), below the 25th percentile, and above the 75th percentile in 38, 26 and 21 regions, respectively. CONCLUSION: The study has shown significant differences in the ASD diagnosis rates by regions in the country against a backdrop of a low (compared to international data) number of registered cases of autism. The presented data suggest that, due to the lack of proper diagnosis, a significant number of individuals with ASD do not receive adequate medical care, nor do they receive social, psychological, or pedagogical support. Possible reasons for this probably include low awareness of new diagnostic approaches among psychiatrists; low level of involvement of pediatrics professionals in screening activities; and fear of stigmatization because of a psychiatric diagnosis in the absence of a developed medical care infrastructure that encompasses a social, psychological, and pedagogical support system for people with ASD.