The search for a timely diagnosis: Parents’ experiences of their child being diagnosed with an Autistic Spectrum Disorder

Abstract

Objective: This study aimed to describe the experiences of a group of South African parents whose children had received Autistic Spectrum Disorder (ASD) diagnoses. Method: A qualitative approach involving semi-structured interviews with a sample of eight parents (seven mothers and one father) of ASD children was used. Results: These interviews highlighted key issues in the area of ASD in South Africa, including: a lack of knowledge amongst professionals, an unwillingness to diagnose, and lack of available support and facilities. Many of the parents in the sample reported significant difficulties in obtaining an ASD diagnosis. These findings are discussed in the light of the importance of early intervention in South Africa. Conclusions: Practitioners appear to be reluctant to diagnose and label children with ASD at an early age. This reluctance results in lost opportunities for early intervention and years of uncertainty and distress for families. Access to resources for diagnosis and intervention for children with ASD in South Africa appears to be limited to a few families. For this select population, many difficulties and much dissatisfaction with diagnostic processes remain. The study recommends enhancing awareness of ASD to facilitate early identification, and to strengthen the support offered to parents of children with ASD.

Journal of Child and Adolescent Mental Health 2014, 26(1): 49–62