Fathers' Experience With Autism Spectrum Disorder
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder that causes very mild to severe impairments in communication skills, social interactions, and unusual behaviors that interfere with the children's ability to function independently and interact appropriately with other people (American Psychiatric Association [APA], 2013). Children with ASD often appear normal (without physical deformities). The impairments are sources of economic burden, decreased emotional well-being, and decreased family cohesion. Some parents of children with ASD adjust, adapt, and become resilient when facing the multiple challenges of ASD, but others experience anxiety, depression, and poor mental health that can lead to decreased family cohesion and well-being. Fathers have an important role in family cohesion, overall family well-being, and improved outcomes for children with developmental delays; yet very little research exists regarding fathers of children with ASD. The purpose of the study was to describe the experience of fathers of children with ASD, the depression or anxiety they may experience, and any resources needed to help them actively engage in their role as a father of a child with ASD. ASD affects children in all socioeconomic and races, though not equally. A phenomenologic single case study was conducted with ten White fathers of children with a formal diagnosis of ASD (ASD: ICD-9 Code 299) who live in the same home as their children with ASD. White fathers were selected for the study because the ASD prevalence rate in White non-Hispanic children is 1 in 63, significantly higher than other races (Baio, 2014). Fathers were asked about their children with ASD, the effect of ASD on the fathers' lives and lives of their family, challenges they faced as fathers of children with ASD, strengths they had to meet and cope with the challenges, their reaction to the diagnosis, how other people reacted or responded to their children, reaction to these people, advice they had for other fathers of children with ASD, their needs to help them in their role as fathers of children with ASD, and their sources of support.Fathers in the study described their family life and making adjustments, their needs to meet the challenges of ASD, and feelings of grief and loss related to ASD. ASD became the center of family life requiring every member of the family to adjust and adapt to the challenges of ASD. The fathers described their needs including money, teamwork, honesty and information, get involved/take action, and time. The fathers expressed a variety of emotions, representing their grief and loss. Grief and loss after receiving the ASD diagnosis is similar to the grief and loss experienced with the death of a loved one. The stages of grief and loss for these fathers included denial and isolation, anger, bargaining, depression, and acceptance similar to the classic work of Kubler-Ross and Byock (2011). Movement through the stages of grief and loss is not linear, the stages may occur at any time, any order, and may be repeated at any time. Learning about the fathers' experience with ASD can assist health care providers to address the fathers' needs and help them move through the stages of grief and loss to the acceptance stage where they can become resilient against the challenges they face related to ASD.