Families in Transition: Parental Perspectives of Support and Services for Children with Autism in Kazakhstan

Abstract

ABSTRACTThis qualitative study focuses on the changing system of professional care for children with autism spectrum disorder (ASD) in post-Soviet Kazakhstan. We have explored parents’ experiences of caring for a child with ASD focusing on their perceptions of educational, health and social support services available to them in their communities. Focus group discussions with 17 parents raising children with ASD were conducted in two major cities of Kazakhstan. Focus group interview data were transcribed and analysed using open coding and axial coding procedures. The following main themes and categories were identified and discussed: delayed detection of ASD and multiple pathways to the diagnosis; challenges for families in accessing and receiving health care for children with ASD in the public health care system; obstacles to accessing special education and a lack of inclusive education programmes for children with ASD; limited public benefits and social services available for these families in their communities; the lack of support from professional service providers in aiding parents with children ASD; and low public awareness of the disorder in the society. Drawing on family caregivers’ perspectives, recommendations for policy-makers and service providers are given to strengthen the care for children with ASD in Kazakhstan.