Raising a child with autism : exploring family support structures

[摘要] ENGLISH ABSTRACT: Autism or Autism Spectrum Disorder (ASD) is a condition that, at present, affects approximately one out of every 100 children globally and indications are that the prevalence thereof is steadily on the rise. ASD is a complex neurological condition that impairs social interaction, communication and behaviour. Research on the wide-ranging effects of ASD and its unique characteristics in each child with ASD is widely available. Several studies refer to the fact that ASD has an impact on the family unit, but very few researchers have investigated the support that families from different cultural groups in South Africa are enjoying whilst raising a child with autism. The current situation being what it is means that professionals and families have very little data on the subject and inadequate support is available to address the specific needs of families who are raising a child with autism.The aim of this study was to investigate the support structures of three families from three different cultural groups in South Africa who were raising a child with autism. The central issue that was researched was the support structures available to parents raising a child with autism, and how parents access that support.This is a qualitative study within an interpretive research paradigm. In this case study, the methods of data collection comprised semi-structured interviews, observations and reflective journals. This design embraced qualitative research methods that could expose the uniqueness of each family's experience and allowed participants the freedom to express this. The three families, who were purposefully selected for this study, were from different cultural backgrounds. One of the children in each family met the criteria published in the Diagnostic and statistical manual of mental disorders, fourth edition, text revision (American Psychiatric Association, 2000) for Autism or Pervasive Developmental Disorder not Otherwise Specified (PDD-NOS). The study found that the parents in the three families received support from their spouses and the neuro-typical siblings. The families also enjoyed physical support, financial support and emotional support from different sources. Parents reported feeling supported when others show acceptance and understanding of their children's deficits and when such others are prepared to 'go the extra mile'. The three families also perceived information and guidance as a valuable source of support. Even though they had firm support structures in place, they also reported on the lack of support available to them. All three families enjoyed these forms of support, but it was interesting to find out that the families received the support from different sources.

[发布机构] Stellenbosch University