Parental perspectives on support needs and availability of autism services in South and South-Eastern Europe

Abstract

Purpose Amid the expanding demand on the autism service delivery system, little knowledge is accumulated regarding access and availability of support and services in the region of Southern and South-Eastern Europe – critical for improvement of individual outcomes, as well as family quality of life. The purpose of this paper is to explore how service delivery systems are responding to the specific needs of autistic individuals with autism, as perceived by parents. Design/methodology/approach A qualitative exploratory descriptive method was used. Thematic analysis was used as a pragmatic method to report on the experiences of parents (92% mothers, n = 55) of children, youth and young autistic adults (76% male) across six South and South-Eastern European counties that participated in a survey involving a combination of qualitative and quantitative data collection. Findings Thematic analysis revealed three broad themes: challenging pathways to service utilization, insufficient service options and providers’ competences and lack of continuous and meaningful support across life span. Originality/value The findings from this study add to the small body of literature specific to South and South-Eastern Europe, by exposing problems related to meeting the needs of autistic children and youth and potential ways to strengthen services, as perceived by parents. The findings have potential policy ramifications for the region in which the research was conducted.