PARENTS' KNOWLEDGE, UNDERSTANDING, AND CHALLENGES IN CAREGIVING FOR CHILDREN WITH AUTISM SPECTRUM DISORDER: A QUALITATIVE STUDY

Abstract

Parents of children with autism spectrum disorder (ASD) face multiple challenges, particularly in low-resource settings, including limited pre-diagnostic awareness, difficulties accessing clinical diagnosis, misconceptions about autism, and reliance on informal peer support. Moreover, inadequate post-diagnostic guidance and limited formal support often constrain parents’ capacity to address their children’s developmental and educational needs. This qualitative study aims to gain a deeper acquaintance of parents' knowledge and understanding of ASD in children, which are embedded in the context of parents' life stories as careers of children with ASD. The study adopts an Exploratory Qualitative design based on interpretive paradigm. The study population were 65 mothers of autistic children taking admission in Centre of Excellence for Special Children with Autism (COESCA), Peshawar. 15 participants (mothers) were selected through purposive sampling technique. A thematic analysis approach as outlined by Braun and Clarke (2006) is used to analyze the data. The results show considerable awareness of autism in the pre-diagnosis stage, in which several mothers have the impression that autism is only found in foreign countries or related to mental illness. Typically, diagnosis is triggered by parent or child's observation of early developmental warning signs, which include such things as not pointing to what they want, not responding when their name is called, or delayed speech development. Following a diagnosis, parents' attitudes from "illness" to "difference" shift from being one to be cured, to one to be supported. While doctors remain the mainstay of clinical diagnosis, peer parent networks can also serve as a valuable source of practical knowledge and emotional validation. The most impressive discovery is the continued lack of direction following a diagnosis, as most mothers say they are diagnosed with nothing in place to guide them through therapy, resources or what to expect next, leaving them to navigate a stressful and uncertain time alone. The study shows that the parents' understanding of the diagnosis itself, or an attempt to understand it, is not the problem and is the reason for the parents' distress. Distress is not due to parents lack understanding or attempt to understand, but because there is a lack of systematic post-diagnosis guidance as a systemic serious problem.  Therefore, the study recommends to the healthcare provider, education providers and policy makers to develop a coordinated, guided pathway to care to reduce the burden on mothers of children diagnosed with ASD.