Needs and challenges facing parents/caregivers of children with autism spectrum disorder: The southeast European autism network survey

Abstract

The Southeast European Autism Network (SEAN) was established to enhance understanding of diagnosis, needs and services for children with Autism Spectrum Disorder (ASD) and their caregivers in Southeast Europe. Toward this end, a survey was conducted in 2015/2016 with the main aim to understand the diagnostics, services and experiences of families/caregivers affected by ASD in the Southeast European region, including the Republic of Macedonia. The survey was performed using a questionnaire specially designed by the members of the SEAN network, which included the following four domains: Demographic family characteristics, index child characteristics, service encounters and parent/caregiver perceptions. In this article we present the findings from 60 parents/caregivers of children with ASD in the Republic of Macedonia. Although the average ages at first concern (20.1 months, SD 7.0) and at ASD diagnosis (35.3 months, SD 14.3) were comparable to those in US and Western European countries, important needs and challenges need to be addressed related to early diagnosis, interventions and inclusive educational practices. In this study we conducted descriptive analyses and non-parametric Spearman correlation analyses to examine whether current age of the child was associated significantly with time-to-diagnosis. We also conducted linear regression analysis and the t-test to measure the effects of diagnosis, parental education, time to diagnosis, and current age of the child on impact of the disorder and level of difficulties reported by the parents.