Fathers' Experience with Autism Spectrum Disorder (ASD)

Monday, 9 November 2015

Linda S. Frye, PhD, RN, CPNP
College of Nursing and Health Innovation, University of Texas at Arlington, Arlington, TX, USA

Purpose: The purpose of this study was to describe the experience of fathers of children with autism spectrum disorder (ASD), the depression and anxiety they may experience, and their resources needed to help them actively engage in their roles as fathers of children with ASD.

Background and Significance:  ASD is a lifelong neurological disorder that causes impairments in communication skills and social interactions, and unusual behaviors that interfere with the children's ability to function independently and interact appropriately with other people. In 2010, the prevalence was 1:68 children, a significant increase from 1:88 children in 2008. As the prevalence rate increases, the cost and negative consequences for the children and their families will also increase. Actively engaged fathers were a strong predictor of outcomes for children with developmental delays, an early sign of ASD. Actively engaged fathers also improved family cohesion, family stability, and well-being of the family.  The experience of fathers of children with ASD must be understood and addressed to encourage the fathers to become actively engaged to improve the outcomes for the children and their families.

Design: A phenomenological case study was conducted to expand knowledge, understanding, and gain insight to improve clinical practice and outcomes for children with ASD and their families. Data collection included open ended questions about the children with ASD, the effect of ASD on the fathers', challenges they faced, reaction to the diagnosis and other people to their children, advice for other fathers of children with ASD, and their needs to meet the challenges of ASD. Data collection and analysis occurred simultaneously to identify common themes in the data. Data analysis by the primary investigator was conducted using line by line coding of each transcript using emotion and in vivo coding. Atlas.ti.7.5 software was used to organize the transcripts, quantify the codes, organize the codes into themes, maintain a codebook, and provide an audit trail. Rigor was maintained by evaluating credibility, applicability, dependability, and neutrality. Methodological and investigator triangulation was used to improve rigor.

Findings: All of the fathers stated this was the first time they were asked about their experience with ASD. The three major themes were family life: making adjustments, a father's needs, and grief and loss. ASD became the center of family life requiring the family to adjust and adapt to the challenges of ASD. Fathers’ needs were money, teamwork, honesty/information, getting involved/taking action, and time. Fathers experienced the loss of their ideal children and dreams for the children’s future. The stages of grief and loss for the fathers include denial and isolation, anger, bargaining, depression, and acceptance, similar to the classic stages of grief and loss when experiencing a death.

Clinical Implications: Nurses are in a unique position to serve locally to improve the lives of families and children with ASD. Nurses can proactively listening to fathers, advocating for fathers and their children, addressing their needs, providing information about beneficial interventions, including fathers in meetings and conversations about their children with ASD, and identifying ASD services and the increasing need for services for these children. Serving the children with ASD and their families on the local level can have the same transformation regionally by increasing awareness and number of services available improving the outcomes for the children and their families. Serving locally and transforming regionally can help nurses become leaders globally to improve the quality of lives and outcomes for the families and children with ASD.