Intersectoral Interaction in the Assistance of People with Autism Spectrum Disorders (ASD)

The orientation to WHO methodology for the prevalence of ASD allows us to conclude that about 1.5 million citizens of Russia need assistance. However a comprehensive system of support for people with ASD is still in the design stage and differs from the established “family-centric” foreign approach. Around the family as a central element is generated a supporting ecosystem, formed by the resources of the social environment of parents through the network of personal and professional relationships, formal organizations such as kindergarten, school, medical institutions, and also infrastructure of social institutions. Each of these elements contributes to the creation of a compensating environment for the normalization of the life-support of the child and adult with ADS, but it is the family that specifies the request regarding the range and extent of assistance. The specificity of the model of organization of support for people with ASD in Russia is that its core are non-profit organizations. They were created as projects initiated by individual parents whose families had a child with an autism spectrum disorder, or as parental communities of mutual assistance in the absence of reliable information about ASD in the 1990s and 2000s, as well as any support system in either the state or non-state sectors. However, today there is another vector of development of the system of support for people with ASD, in which NPOs are directly involved: the formation of a system of network interaction involving organisations belonging to different sectors. In a number of Russian regions (Khabarovsk Krai and the Republic of Bashkortostan), the practice of using formal institutions and informal ties between the authorities, representatives of the professional community and business to effectively build a system of support for people with ASD is spreading.

The study was supported by the Russian Science Foundation, project № 24-18-00542.