The impact of ASD on Macedonian families and their experience of parent education

Abstract

Autism spectrum disorder (ASD) is identified as having a significant impact on family life. Educating parents of children with ASD about the condition benefits both child and family. However, such programmes are typically unavailable in South-east Europe. To address this, the ESIPP project developed, provided and evaluated parent education for Croatian, Cypriot and Macedonian families, training 335 family members. A parent education curriculum and locally differentiated materials were developed, as well as recommendations for European policymakers. The project was evaluated using a mixed methods programme evaluation methodology in which families were surveyed regarding their experience of family life and the impact of parent education. This paper presents the findings of the study regarding the 70 Macedonian family members. Pre-training (n=70) and post training questionnaires (n=42) were completed, and semi-structured interviews were undertaken (n=16). The impact of ASD on quality of life, families’ experience of stigma and isolation, the inadequacy of professional support and the importance of family support are discussed. The positive impact of attending parent education is identified, as is its impact on parental happiness and relational issues and the need for continued parent and professional education regarding ASD