Mothers' experiences: A missing puzzle piece in caring for children with autism spectrum disorder

Abstract

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by impairments in social relationships, communication, and restricted and repetitive behavioral patterns [1]. In recent years, epidemiological studies have shown a rapid increase in the prevalence of ASD. According to the report from the Center for Disease Control and Prevention in the United States, the prevalence was estimated to be 1 in 59 individuals in 2014 and 1 in 54 individuals in 2016 among 8-year-old children [2]. ASD is a complex developmental condition that is accompanied by persistent challenges in social interaction, speech, and nonverbal communication, significantly affecting mother-child interactions [3]. One of the most significant concerns for mothers of these children is how to care for them. The exact cause of this disorder remains largely unknown, and lack of awareness about autism often leads to delayed recognition of the child's difficulties by families [4]. As a result, the golden time for early intervention may be missed, and life in society becomes more challenging for both these children and their caregivers. Additionally, these children require care and support from their families and community institutions from birth throughout their growth and development, making caregiving a stressful process for mothers. Therefore, caring for these children necessitates the adoption of specialized caregiving and parenting approaches [5, 6]. The literature review indicates that the majority of studies conducted in the field of caring for children with autism have primarily been quantitative studies with a traditional intervention approach, focusing on the effectiveness of cognitive-behavioral therapy play therapy, storytelling therapy, supportive counseling, psychotherapy, and teaching coping skills [7-9]. While quantitative research methods have their benefits in many areas, they alone cannot provide a comprehensive examination of the deep dimensions of the phenomenon from the perspective of individuals' first-hand experiences [10].