EXPLORING FATHERS’ PERCEPTIONS, BELIEFS, AND EXPERIENCES ABOUT THEIR CHILD’S AUTISM SPECTRUM DISORDER: A THREE-PART STUDY TO INFORM TARGETED SERVICE AND SUPPORT

Date

2022-07-21

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Abstract

Background: The cognitive experiences, such as perceptions and beliefs, of caregivers raising children with autism spectrum disorder (ASD) influence whole-family coping, treatment decision-making, and intervention needs and processes. Parents’ self-reported stress, coping and adjustment, etiological beliefs, and social support affect not only parent, family, and child functioning, but also influence long-term outcomes. Given the importance of contextual variables on children with ASD, understanding and supporting their caregivers is a critical focus of research. In most ASD studies, mothers are the primary parent participants, providing most, if not all, of the parent reported data. As a result, little is known about fathers’ perceptions of, beliefs about, and experiences surrounding their children’s ASD; as well as whether and how these differ from mothers’ perceptions, beliefs, and experiences. The omission of fathers in ASD research parallels a frequent failure to consider their unique needs when serving families whose children have a lifelong neurodevelopmental diagnosis. However, understanding the potentially unique experiences and needs of fathers may elucidate future directions for father focused ASD research and reveal considerations for practitioners to better support dads raising children with ASD. Purpose: This three-part study explored the aforementioned gaps in current ASD literature regarding fathers of children who have ASD. The purposes of the respective studies included: (1) comparing self-reported stress, coping, support, and cognitive representations of ASD between fathers and mothers; (2) identifying patterns in and comparisons between parental dyads’ etiological beliefs about their children’s ASD diagnoses that may influence treatment-seeking behaviors; and (3) examining the unique social support needs and barriers of fathers of children with ASD. Methods/Results: Study 1 was previously completed as a Candidacy (i.e., thesis) requirement. Data from 361 biological parents of children with ASD were analyzed, all of whom participated in a larger study exploring the relationships between parent cognitions, affective responses, social supports, and child-specific characteristics. Of these participants, 67 were fathers 294 were mothers. Results identified significant differences between mothers' and fathers' self-reported stress and coping. Using a mixed-methods approach, Study 2 explored the etiological beliefs of a subset of the participants from Study 1, fathers in parental dyads (N = 27 dyads), and compared these with their children’s mothers’. Findings indicated significant differences between mothers’ and fathers’ etiological beliefs about their child’s ASD. Finally, since so little work has been done to investigate fathers’ unique needs, Study 3 yielded a scoping review utilizing preferred reporting items for systemic reviews and meta-analyses (PRISMA) guidelines to provide insight into the unique social support needs and barriers to support of fathers whose children have ASD. Results revealed 35 studies for review. Upon data extraction, eight common support needs and seven support barriers for fathers of autistic children were identified. Conclusion: Outcomes of these interrelated studies have both research and practice implications that highlight the unique needs of fathers whose children have autism.

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Keywords

Autism spectrum disorder, Parental perceptions, Fathers, Stress, Coping, Support, Etiology

Citation

Portions of this document appear in: Grebe, Stacey C., Sarah S. Mire, Hanjoe Kim, and Milena A. Keller-Margulis. "Comparing fathers’ and mothers’ perspectives about their child’s autism spectrum disorder." Journal of Autism and Developmental Disorders (2022): 1-14.