Autism in Russia: A Contradictory Field of Diagnostics and Statistics

Abstract

The multiplicity of interpretations of autism is connected with both uncertainty and variability of endogenous / exogenous factors that determine it, and recent tendencies of demedicalisation processes and growth of interdiscursivity of autism spectrum disorder (ASD). Issues of ASD have connected not only the health care but embraces practices and discourses of pedagogics, law, mass-media, and social policy. This is accompanied by the redistribution of accents of problematisation of ASD and growth of its multiple understanding. Apart from the dominant narrative which connects it with a disease / pathology, there are new narratives that associate ASD with an atypical condition and some radical views characterise ASD as alternative neurodevelopment pathways and claim for neurodiversity. The article is devoted to the study of the social characteristics of ASD in Russia related to the inconsistency of epidemiological assessments and the conflict field of problematisation of ASD within professional communities in terms of diagnosis and interventions. The study employed a mixed-method approach, including analysis of documents and semi-structured interviews with professionals and parents of children with ASD. In recent years, there are some qualitative transformations in institutional structures which support people with ASD both in the state level and in civil society and mass-media. Despite some positive changes in terms of the support of people with ASD both on levels of the government, civil society and mass-media, there are still many issues including the lack of the unified system of early diagnostics of autism which make difficult early interventions and support.