UNIVERSITY PARK, Pa. – Researchers at Penn State and the University of South Carolina have recently found that a program for parents of children recently diagnosed with autism spectrum disorder (ASD) shows promising evidence of helping parents access services for their child, strengthening their co-parenting skills and contributing to their well-being overall.
Autism Parent Navigators (APN) focuses on the knowledge, skills, and support that parents need during the transition period after a professional informs them of their child’s ASD diagnosis, said Mark Feinberg, program co-developer and research professor with Penn State’s Edna Bennett Pierce Prevention Research Center (PRC).
APN was developed to address the service gaps for families with a young child recently diagnosed with ASD. Parents of children with ASD often regard the diagnosis of ASD as a “life-altering event” which requires substantial family adaptation in the form of changing and restructuring family processes, including shifting roles and interactions, Feinberg explained.
Parents’ adjustment to the autism diagnosis can be stressful, including conflict between parents, depression, and feelings of being overwhelmed, according to Feinberg. He said that parental conflict and depression undermine sensitive, warm, and consistent parenting—which are critical for the well-being and healthy development of children with autism.
To address these issues, APN helps parents communicate and support each other in their role as parents, as well as learn to navigate complex and often fragmented education, health, and social service systems, Feinberg explained.
The study involved thirty families including 63 caregivers who participated in the test of the six-week Autism Parent Navigators program. Parents were eligible if they had a child up to 8 years old who had received a diagnosis of ASD or a positive screen within the past 12 months. Feasibility and acceptability data were collected weekly.
According to Feinberg, “Parents appeared to like APN, completing 80% of scheduled sessions and rating the program highly in feedback surveys. One parent told the researchers that APN ‘has made us realize we are a team, not just two people trying to make it through a difficult time.’”
Parents reported on their well-being and relationships before and after participating in APN. Mother’s reports showed increased levels of positive co-parenting. Both mothers and fathers showed increases in reports of quality of life and decreases in scores on a measure of caregiver strain.
The researchers developed Autism Parent Navigators by adapting a program for expectant and new parents, Family Foundations, which helps new parents learn to provide warm and consistent parenting while coordinating and supporting each other. Feinberg noted that in four trials, Family Foundations has demonstrated robust long-term impacts on family relationships, parent mental health and child adjustment.
The study’s findings, published in the Journal of Family Studies, show that Autism Parent Navigators could be an effective tool for supporting families in the months following their child’s diagnosis, Feinberg concluded. The researchers are now conducting a randomized trial of the program, funded by the National Institute of Child Health and Development.
The lead author on the paper was Robert Hock, associate professor in the College of Social Work, University of South Carolina. Co-authors on the paper included Feinberg; Aimee Rovane, graduate teaching assistant, University of South Carolina; Damon Jones, associate research professor with the PRC at Penn State; and Amy Holbert, CEO, Family Connection of South Carolina. Funding for the project was provided by Penn State’s Social Sciences Research Institute.