Parent activism in Kazakhstan: the promotion of autistic children’s educational rights by the Ashyk Alem foundation

Abstract

The goal of this research is to explore how, in the absence of a nationaltradition of parental activism, parents have been able to transcend their familyproblems, to register an organization, and to advocate for the rights of theirchildren with autism to receive educational, health, and social services andhave equal access to education as guaranteed by the constitution. The data forthis case study were collected from interviews, site visits, and two focusgroups. Interviews were accompanied by participant observation. We considerhow the parents who founded the NGO Ashyk Alem have come together,what has motivated them, and the ways they have interacted with the existingsystem of services for children with special needs. We explore the educational,social, economic, and cultural factors in the country that impact the currentstate policy. The paper suggests venues of collaboration between the state andNGOs using the agents of change working within the state system and withinbroader civil society in order to enhance the national system of education. Wefound several key contributing factors to Ashyk Alem’s success. First, themothers belong to a new group of post-communist era middle-class parentswith advanced degrees, working in business or other fields and capable oftransferring managerial skills into non-profit management. Second, the mothershave always received support from their husbands. Third, they havekept a broad view of the system while addressing specific problems of childrenwith autism by organizing press conferences and round tables withleading national specialists alongside activities for families and children.Finally, the founders of Ashyk Alem would not have been able to succeedwithout the respect and support of specialists in the state system who wantedto develop new ways of working. As some parents are changing from beingpassive recipients of state services and becoming active advocates of theirchildren’s rights, they are also networking with similar organizations worldwide.Educators consider inclusive education to be a serious challenge forpractitioners because it requires a lot of investment. Using the experience ofAshyk Alem can turn the good intentions of the state into reality.