Helping families
affected by autism to thrive

Every parent knows that raising a child can be stressful. However, parenting a child with autism spectrum disorder (ASD) can be all the more difficult. When a child has difficulty communicating with others and establishing typical relationships and exhibits repetitive behaviors or has restrictive interests, it can result in increased stress throughout the family.

It's a serious issue in the United States. The Centers for Disease Control and Prevention (CDC) estimates that about 1 in 88 American children have ASD, a tenfold increase in prevalence in the last 40 years.

The challenge of caring for a child with ASD isn't limited to within the family itself. Parents find that the lack of social, professional and societal support adds another layer of strain in their lives.

Brian Freedman, director of the Transition, Education and Employment Model (TEEM) unit in UD's Center for Disabilities Studies, was interested in exploring whether the increased stress had a negative impact on a family's stability.

"Early on, I observed firsthand that many families of children with ASD show amazing resiliency and desire to advocate for their child," Freedman remarks. "After seeing this resiliency—and the accompanying stress—through my clinical work, I decided to explore the internal and external challenges that families face with a child with autism."

Freedman, together with a team of researchers from Kennedy Krieger Institute and Johns Hopkins University, first conducted a study examining divorce rates. It was published in 2012 and was cited more recently in the article "Love in the Time of Autism" in Psychology Today.

"Despite a commonly quoted statistic that indicated an 80 percent divorce rate among parents of children with ASD, we could not identify an evidence-based source. We did not observe a difference between the marriage rates of parents of children with ASD and other parents. We also discovered that an increased severity of autism symptoms did not correlate to more marital strife," says Freedman.

That does not mean there is not additional stress. A second element of Freedman's research, conducted in collaboration with colleagues at Loyola University Maryland, examined the relationship of siblings in a family with ASD, compared to families with a child with Down syndrome. Siblings of children with ASD reported more challenges in such relationships compared to siblings of children with Down syndrome. Furthermore, greater relationship challenges also were linked with a higher likelihood of sibling anxiety.

Freedman has used the results of this research to develop interventions that can increase a family's overall quality of life, decrease their stress and help them to live fulfilling lives.

Through his work at the Center for Disabilities Studies (CDS) in UD's College of Education and Human Development, Freedman has fostered a variety of programs that provide support for children, families and young adults with developmental disabilities. Freedman oversees UD's college program for students with intellectual disabilities (Career & Life Studies Certificate–CLSC), offers support groups for families of young adults with ASD and other developmental disabilities, and contributes to the CDS-led Delaware Statewide Plan for Improving Services/Support for Individuals with ASD.

Through his work with families, Freedman has found that raising a child with ASD is often compounded by challenges in obtaining adequate medical, psychological and educational services. Children with ASD experience high rates of sensory processing problems, and new research suggests a potential linkage between ASD and gastrointestinal (GI) issues.

These children may also exhibit co-occurring mental health challenges, such as anxiety and aggression, which can lead to additional issues for families. Freedman and his colleagues at Kennedy Krieger Institute and Johns Hopkins University found that children with ASD are nine times more likely than other children to visit an emergency room for psychiatric reasons.

"Limited access to outpatient mental health services often leads children with ASD to seek treatment in the emergency room," Freedman explains. "Due to the limited availability of knowledgeable providers and a lack of insurance coverage for behavioral health services, these issues may go untreated until they become a major health and safety concern for the family."

Freedman hopes his findings will serve as a resource for other practitioners—and emerging professionals who take his undergraduate Families and Developmental Disabilities course in the Department of Human Development and Family Studies.

"I have always greatly admired families of children with ASD," says Freedman. "At the end of the day, I'd like to create an atmosphere for these families in which they can thrive, by knowing how to support themselves and one another and working with a community of service professionals who understand their needs."