Preliminary data from a five-year study on parenting support for families with autistic children shows improvements in mental health and parenting confidence.
The NIH-funded study conducted by Robert Hock, a professor in the University of South Carolina’s College of Social Work, helps families navigate next steps shortly after their child is diagnosed with autism. The Autism Parent Navigator Program connects parents of newly diagnosed children with parents who have already experienced the maze of decisions for families with children on the spectrum.
“We hope families come away with a map that helps set them up for continued development
in parenting skills and confidence, mental health and caregiver relationship quality,”
Hock says.
Early results highlight stronger coparenting and mental health
The study, which ends in 2026, works with two caregivers, whether it’s a married couple or a mother-daughter or some other caregiving team and focuses on service delivery, autism education, teamwork and communication, parent-child relationship skills, self-care and decision making. Children in the study, which includes 196 families from 40 counties in South Carolina and seven counties in North Carolina, range in age from 18 months to eight years and are the first in their family to receive an autism diagnosis.
Families are randomly assigned to one of two groups. One group participates in six sessions of structured content that includes skill-building activities and a workbook. The other group receives parent-to-parent support primarily over the telephone. Hock’s study compares the effectiveness of the two programs.
Preliminary results show participants experienced positive improvements in their coparenting relationship, such as less conflict, feeling more supported by their partner, increased closeness and better agreement about goals for their child.
Hock credits partners at USC and in the community with the development and success of the program. Family Connection of South Carolina helped develop and test the program and provided feedback on the curriculum.
More than 70 referral partners supported recruitment efforts. The Early Social Development Lab and psychology professor Jessica Bradshaw have helped provide 68 free autism evaluations. Dr. Mark Feinberg at Penn State is also a principal investigator on the study.
Through collaboration with community partners, the initial project has been able to
expand its presence through social media with the College of Social Work’s Autism and Family Lab as well as free events catered to children with autism, and initiatives such as an
inclusive swim program offered by the YMCA. The research team also has been presenting
preliminary data at national conferences.
Peer navigators offer real-world guidance
In addition, a grant from the Carolina Autism and Neurodevelopment Research Center supports virtual support groups for parents of children with autism, dads of children with autism, parents of adults with autism and autistic mothers. Each six-week session is led by experienced peer facilitators who provide guidance, encouragement and a non-judgmental space to share experiences and resources.
About 60 people from various locations, some from as far away as California, have participated in the support groups so far. Caregivers may sign up for summer and fall groups for which dates will be announced.
Two participants from the pilot phase of the Autism Navigators Program serve as peer facilitators for the support groups.
“It has been rewarding to see them build their own confidence and to use that to benefit others – professionally and personally,” Hock says. “Part of the value of the program is to build community assets and to allow others to pay it forward.”
“Part of the value of the program is to build community assets and to allow others to pay it forward.”
Carissa Stevens says her personal experience as a parent navigator and participant in the pilot study led to her interest in helping to coordinate the support groups. She also was inspired to pursue her master’s degree in social work. She has an undergraduate degree in journalism and a master's in management and leadership.
Stevens explains that many parents feel isolated and need guidance and support on what to do next after receiving a diagnosis. She remembers being there when her son Malachi, now 10, was diagnosed on the autism spectrum in 2017.
“My family needed direction at the time. Most parents like myself jump right into therapies and early interventions for their child,” says Stevens, who also has two neurotypical children, Malachi’s twin and a 17-year-old daughter. “You lose yourself sometimes because you are so focused on making sure your child has everything they need, but you don't care for yourself or other members of the family.”
Fast forward, and today, Stevens offers her support and experience to families who are where she once was. The support groups help caregivers reduce stress, maintain relationships, and care for their other children who may not be on the spectrum.
“In addition to making sure your child has what they need, one of the most important
things caregivers can do is to find resources for themselves,” Stevens says. “We become
a wealth of knowledge for our children, but we so often neglect our own needs, and
it results in stress and anxiety, health issues and broken relationships. Take care
of yourself so you can be fully there for your child.”
Building toward a sustainable statewide model
In addition to the Autism Parent Navigators research, Hock and Ph.D. student Yarin Cohen are analyzing data from a qualitative study with caregivers of autistic adults and plan to present it at the Society for Social Work and Research national conference in January. A new study starting in June, led by psychology professor Sarah Edmunds, will focus on supporting parents in implementing new skills with techniques such as emotional labeling and giving specific, descriptive compliments.
Ultimately, Hock’s goal is for the Autism Navigators Program to become a blueprint to launch similar programs beyond South Carolina. He also has been working with state agencies on a proposal to make access to peer support services sustainable for families by having them covered by Medicaid or other sources.