Mothers’ Experiences of Children in the Autistic Spectrum in Greece: Narratives of Development, Education and Disability Across their Blogs

Abstract

Autism occupies a prominent place in scientific research both as a medical and as a socio-cultural phenomenon. Autism is studied as a disorder and a diagnostic label, as an experience of people with autism, their parents and their supporters, and finally as a disability related to stigma and rejection. The purpose of this article is to describe the posted experiences on personal blogs of five mothers who have school-aged children in the autistic spectrum in Greece. The qualitative method of content analysis is used for analysing the personal narratives across their blogs because this method focuses on describing and understanding the presented experiences and acknowledges the central role of the researcher in describing and signifying the issues discussed. The results of the content analysis show that the mothers seem to view autism through a developmental perspective and as they lead efforts for their child’s developmental timeline they are worried about their child’s developmental course and tend to experience high levels of anxiety, depression and burnout. The mothers act as practical scientists and co-therapists, taking an active role in educating and raising their children, finding a school and selecting appropriate interventions. The mothers struggle to obtain quality in education and services, while faced with the absence of technical infrastructure and understaffing in schools, lack of funding, covert or overt practices of acceptance and rejection of people with disabilities in the educational system, the attitudes and ignorance of some educators, and the high cost of private services. These mothers, at first, view autism as a tragedy and within their social environment they face covert or overt rejection since their children are stigmatised as “abnormal”. Later on, the mothers accept their child’s disability as a prerequisite for gaining a new life experience. It seems that the mothers have a mixed perception of disability, which sometimes tends to be closer to the medical model, sometimes to the hybrid model, while other times to the social model of disability.

Keywords:

• Autism
• blogs
• content analysis
• disability
• education
• mothers of children in the autistic spectrum
• narratives
• online research
• social model of disability

Acknowledgement

There was no research funding for this study, and no restrictions have been imposed on free access to, or publication of, the research data.

Disclosure Statement

No potential conflict of interest was reported by the authors.