Abstract
Background Autism is a neurodevelopmental problem that is increasing at an alarming rate worldwide. Rearing and caring for children with autism depends upon the perception of mothers and various factors associated with it. There is a gap in the literature regarding the detailed accounts of mother's experiences regarding autism in Nepal. Hence, this study was undertaken to explore lived experiences of mothers raising children with autism. Materials and Methods Qualitative phenomenological study design was used and nine mothers with autistic children were selected using purposive sampling technique. Data were collected using in-depth interview guidelines and analyzed using Colaizzi's steps. Results Findings of the study revealed that mothers raising children with autism encountered numerous problems in their life. They felt physically exhausted due to the continuous supervision of their child. Emotional problems such as denial, upset/sadness, and worry were also common among them. In addition, all mothers faced social problems such as social blame, social isolation, and ignorance from their relatives and society due to the atypical behavior of their child. Furthermore, the economic problem was also acute among mothers due to job loss, costly medical treatment, and therapies. So, to deal with the stressors they faced, mothers adopted various coping strategies such as respite care, problem-focused strategies, religious coping, and positive coping in their everyday life. Conclusion In conclusion, to the authors' knowledge, this is the first study documenting the experiences of Nepalese mothers having autistic children. Hence, health care professionals need to pay more attention to address the problems of mothers while treating their autistic children. The Government of Nepal also needs to formulate a policy for the rehabilitation of autistic children in society.
Highlights
Autism is a pervasive neurodevelopmental disorder characterized by impairments in social communication and restricted, repetitive patterns of behavior, interests, or activities [1]. e Centers for Disease Control and Prevention biennial data from the Autism and Developmental Disabilities Monitoring Network (ADDM) on the prevalence of autism in the US showed 1 in 54 children have autism spectrum disorder (ASD), representing a 10% increase from previous estimates [2, 3]
Findings are discussed with the established facts and published studies are related to lived experiences of mothers raising children with autism. e objectives of the study were to explore the lived experiences of mothers raising children with autism in their day-to-day life
Perception about Autism. e first major theme emerged from this study involved the perception of mothers on autism. ere was a varied experience of mothers’ perception on autism. Each mother has her own way of understanding the problem, i.e., behavioral problem, developmental problem, and mental retardation, which require life-long care, assistance, and attention. e current findings support previous studies that found overwhelming perception of mothers on autism as a developmental disability and believed that it is caused by several factors including developmental delay, medical disorder, genetic disorder, and neurodevelopmental problems that begin before birth or infancy [24]
Summary
Autism is a pervasive neurodevelopmental disorder characterized by impairments in social communication and restricted, repetitive patterns of behavior, interests, or activities [1]. e Centers for Disease Control and Prevention biennial data from the Autism and Developmental Disabilities Monitoring Network (ADDM) on the prevalence of autism in the US showed 1 in 54 children have autism spectrum disorder (ASD), representing a 10% increase from previous estimates [2, 3]. Problems in communication and social skills, and behaviors that they experience, cause their parents to have various challenges. This study was undertaken to explore lived experiences of mothers raising children with autism. Findings of the study revealed that mothers raising children with autism encountered numerous problems in their life. All mothers faced social problems such as social blame, social isolation, and ignorance from their relatives and society due to the atypical behavior of their child. To the authors’ knowledge, this is the first study documenting the experiences of Nepalese mothers having autistic children. Health care professionals need to pay more attention to address the problems of mothers while treating their autistic children.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
