Family Experiences and Health Following the Diagnosis of Autism

The aim of this research was to explore the family’s experiences of everyday life after their child had been diagnosed with autism and plan for the future. This study used a grounded theory approach to capture, analyze, describe and generate a conceptual framework capturing the family’s experiences since the diagnosis of autism. Data were collected through open ended, semi structured interviews. Descriptive information was collected from a demographic survey, Family Quality of Life Survey and the Sense of Coherence Scale. From the data analysis, the Family Experiences and Health Following the Diagnosis of Autism (FEHDA) Conceptual Framework was generated and represents the experience following diagnosis of autism, the status of family health and the factors mediating family experience and family health. The FEHDA proposes the experience as a stage sensitive experience and involves the stages of paralysis, searching, and applying. Paralysis can be characterized by having a sense of being overwhelmed and experiencing inaction in thought, spirit and/or body. Families who move through paralysis enter a stage of frenetic, often hyper searching for readily available answers and solutions. The last stage, application, is the stage where the family has generated a plan for coping with and managing everyday life and parenting a child with autism. This stage includes the family’s ability to evaluate and modify their plans. The stages of navigating the unknown‚ are inversely related to the construct of family health. Family health has been conceptualized as mental, physical and emotional capacity to successfully manage everyday tasks and generate opportunities for preservation of family quality of life. The third construct self and others‚ suggests the processes of navigating the unknown‚ are mediated by internal (family or self) and external (others) factors. The factors are interconnected and include reflection, willingness, understanding, knowledge and experience, trust, strength and hope. These factors have characteristics of coping and sense of coherence. The FEHDA Conceptual Framework proposes relationships among the family’s experiences constructing everyday life and navigating family decisions that bring about various levels of uncertainty that ultimately influence family health