NGOs' opportunities in helping children with autism spectrum disorders

The article discusses the problem associated with the fact that the increase in the number of children diagnosed with autism spectrum disorder (ASD) in the last two decades in Russia is accompanied by an increase in the problems inherent in the families in which these children are brought up. The unpreparedness of state social, educational, and healthcare institutions to solve these problems influenced the positions of NGOs as the most interested providers of social services for children with ASD and their families at present. At the same time, most NGOs working with children with ASD have been created and are being created on the initiative of the parents of these children. An analysis of the most typical problems that families face during the birth of a child with ASD and their subsequent maturation, as well as the opportunities that NGOs have in solving these problems, is the subject of the study presented in the article. The authors' analysis of the study results is based on empirical material obtained by interviews with representatives of NGOs (7), interviews with parents (7) and parent focus groups (5). The study identified psychological problems experienced by all family members of a child with ASD. Most families have a low level of material well-being due to the high costs of rehabilitation of a child with ASD. They experience difficulties in placing a child in a preschool and school educational institution, difficulties in transport accessibility of those places where institutions are in which children with ASD receive services. Parents are faced with the unfriendly attitude of people around them; they believe that there is a hidden stigmatization of their families in society. According to parents, their children with ASD, as they grow up and reach adulthood, are doomed to live in neuropsychiatric boarding schools after the death of their parents. The problems identified by the parents indicate that in the Russian sphere of social services there is no system of services for this group of children that could provide them with social support at different age stages of their life path. Non-profit organizations strive to respond to the needs of this target group by providing them with the necessary social services. To solve the problems of families of children with ASD, NGOs use the resources of volunteers, pro bono specialists, attract private donations, and have the support of the state, which provides them with access to budget funding. However, the resources of NGOs are limited, so it is necessary to develop intersectoral interaction in solving the social problems of families raising children with ASD. Changes in public attitudes towards families with children with ASD as more tolerant and benevolent require systemic social and cultural changes over a long period of time.