Severe childhood autism: The family lived experience

Abstract

Background: There is limited literature that focuses solely on the experiences of families when a child has severe autism and includes data collected from multiple family members. Related review of the literature includes studies addressing family quality of life and qualitative studies on the experience of families with a child who has autism. Objective: The goal of this study was to understand the lived experience of families with children who have severe autism by narrowing the focus to only families of children with severe autism and broadening the interviews to include multiple family members. Method: The study used van Manen’s (2014) phenomenological approach for data collection and analysis based on in-depth unstructured interviews of 11 families with 22 family members including mothers, father, grandmothers, an aunt, a sibling, and a friend. Findings: Six essential themes were identified. First, families found autism a mysterious and complex condition. This included the misconception that autism is a mild disability, that autism is an invisible condition, the unpredictable nature of autism, and the challenges of assessing severity. Second, families dealt with startling and severe autism-related behaviors that were often self-injurious, harmed others, and damaged homes. Third, families dealt with profound communication deficits that resulted in isolation between the family and child. Fourth, families experienced unrelenting stress related to their lack of sleep, caring for a child with developmental delays, coordinating myriad health care services, cost and concern for the child’s long-term future. Fifth, extreme isolation from their child, friends, school, the public, and health care providers ensued. Sixth was a strong dependence on families for support and formation of hybrid families which included nuclear and extended families and friends coupled with a compassion that seemed to blossom over time. Conclusion: The findings inform health care providers about the need to recognize and provide better quality of care for children with severe autism and their families. Implications include the importance of education for health care providers on caring for these families. The findings emphasize the importance of developing appropriate health care policy to provide much needed resources for children with severe autism and their families.