Abstract:

For families of children with disabilities, risk does not only come with the disability. Risk also comes with social exclusion and inability to meet and maintain the norms expected by the society. Disability in this context, is a defect and a stigmatizing mark because it prevents them from meeting the social and cultural expectations. The dilemma of recognizing the condition to come out seeking help for their child and maintaining the social image of the family creates real stressors for families. Therefore, while fighting/learning to live with a disability, families also seem to fight with the social and psychological stressors that create enormous barriers in this journey. This dilemma also impacts when these families get help and access to appropriate services.

The purpose of this qualitative study was to reveal and document the experiences of 5 families whose children were identified with Autism.

Qualitative research methods, mainly case study, were utilized in order to review the cases. Data were collected from semi-structured interviews conducted with the families and their special education teacher. Interviews were recorded and transcribed. Data were read, reread and coded, and emerged themes were compressed under overarching categories. Reliability measures were taken by triangulation, mainly using member checks, asking the interviewees to read the transcribed data and providing further clarification if needed. The following categories emerged from the analysis: 1. Reading between the lines: The impact of culture on the understanding of and dealing with the disability, 2. The experience of utilizing the special education system and the general education system, 3. Relationships with other families of students with Autism: support vs. encumbrance? 4.An unexpected: Education level does not matter when it comes to attitudes.

The social context makes it harder for families to accept, understand, and take action about their child’s disability. Keeping it secret seemed to be the easier route to take for most of the families. Due to the fact that mostly the characteristics of the child are attributed to the mother in the culture, mothers seem to struggle more with overcoming the denial and in taking the steps towards learning to live with the situation. In some cases, fathers seemed to struggle whereas the mothers took the role of a facilitator. The condition is viewed as something that would harm the status of the family and the child in the society, therefore is deemed as something to be kept hidden. The lack of understanding of the disability creates pressure on the family and interferes with the help and services they will get for their child and family. What keeps families going seemed to be the fact that they have hopes for overcoming Autism unlike other families of children with some other conditions. Feeling very lonely and helpless throughout the process due to lack of resources and support makes it harder for families to get through. Educational level of parents does not make a difference in how disabilities are viewed or understood.

Further research that shed light on the experiences of a broader population is warranted in order to develop effective ways of working with families and their children with special needs and consulting them throughout the process.

Keywords:

Families, students with disabilities, Autism, cultural issues.