Experiences Impacting the Quality of Life of Mothers of Children With Autism and Intellectual Disability

Abstract

In order to identify factors affecting the quality of life of mothers of children with both autism and intellectual disability, the first author interviewed sixteen mothers of affected 11-24 year olds and transcribed audio recordings of the interviews. The first two authors analysed the resulting texts using a hermeneutical phenomenological approach. Mothers described living with their child's challenging behaviors, adapting to the increased demands and resultant isolation as lowering their quality of life. They described how surviving had strong negative impacts on their health and relationships. A majority of mothers described rewards associated with their children. Quality of life is a concept describing overall well-being and results from a complex interaction of health, independence, relationships, goals and standards in the context of a person's environment . Autism represents a group of severe, chronic, lifelong, neurodevelopmental disorders which are diagnosed by impairments in the areas of social interaction, communication, and repetitive behaviors or interests . Intellectual disability is characterized by an intelligence quotient of less than 70 and limitations in adaptive skill which are manifest before 18 years . About 70% of persons with autism also have_intellectual disability . Since the 1980s, the prevalence of autism diagnosis has been increasing both internationally (Centers for Disease Control and Prevention, 2012) and in Australia . Parents of children with autism have been reported to have poorer physical and mental health and quality of life than other parents. Furthermore, mothers of children with autism have been shown to have more compromised health than fathers , mothers of healthy children and the mothers of children with other developmental disabilities . Reasons for the impaired quality of life of mothers of children with autism are likely to be complex. Some have postulated_a genetic basis for the increased prevalence of mental disorders . However, there are many external factors why mothers might have a lower quality of life. Children with autism have more challenging behaviors than healthy children and_challenging behaviors_are associated with lower maternal quality of life . * Acknowledgments: We gratefully thank the Autism Association of Western Australia and the mothers who participated in this