Raising a child with a disability alters parental responsibilities dramatically, impacting many aspects of life. In the United States, roughly one in every 44 children is diagnosed with autism spectrum disorder, while one in 700 born per year has Down syndrome.
While each family in these situations is unique, there tend to be two common areas of concern based on data from parents of children with autism or Down syndrome: marital quality and stress. However, new research from Brigham Young University identifies a powerful key factor to help parents in these areas — uplifts, or the ability to positively perceive relationships, situations and responsibilities. An uplift is an uplifting experience that includes any perceived pleasant experience that may counterbalance daily stress.
According to a study published in the journal Intellectual and Developmental Disabilities, parents of children with Down syndrome have what is called a “Down syndrome advantage”: they report more uplifts, less stress and better marital quality than parents of children with autism. Despite differences between mothers’ and fathers’ reported stress, the study asserts that parents of children with either disability are better off when experiencing consistent uplifts and respite care, or temporary relief for primary caregivers.
“These resources are not frequently investigated,” said co-author Tina Taylor, BYU professor in the Department of Counseling Psychology and Special Education and associate dean in the David O. McKay School of Education. “A lot of power comes when parents choose to perceive their situations in a favorable light. When parents of these children look at the good things that happen — like gaining caring and compassionate attributes — the difficulties become more manageable and stress is mitigated.”
To conduct the research, Taylor worked with former BYU graduate student Jamie Easler, School of Family Life professor Jeremy Yorgason and retired professors Susanne Roper and James Harper. The researchers based their study on a survey of 426 parents (213 couples) of children with these disabilities across the United States and Canada. Connecting stress and quality of marriage to interventions remained a central focus of the study.
The researchers found that nearly 25% of mothers and 20% of fathers of children diagnosed with autism consider their marriages to be distressed. That data contrasts with the 10% of mothers and 2% of fathers of children diagnosed with Down syndrome. “There could be many reasons for these percentage differences,” Taylor said. “These data point to not only a ‘Down syndrome advantage’ but a possible ‘husband advantage.’ One possible explanation is that husbands may not be as directly involved with daily caregiving responsibilities. Because parents’ experiences are interconnected, this warrants further investigation.”
These high percentages indicate there is much work to be done in helping parents lower overall marriage stress levels. The study notes that respite care is directly associated with marital quality for parents of children with autism, and creative solutions to increase access to respite care are needed.
Respite care can be offered by organizations, family members or other individuals and is a necessary part of the process to increase uplifts and recharge. Respite care may allow parents of children with disabilities to step back and recount specific moments of joy with their children, which results in an uplift. Experiencing more uplifts might counteract the detrimental effect of stress on parents.
“For whatever reason, these parents can have a tough time seeing positive perceptions of their family relationships,” said Easler. “We need to find ways to help parents perceive their situation as rewarding and experience uplifts. That’s where interventions can come into play.”
Individualized interventions specific to the differences that come with autism and Down syndrome may aid in closing the percentage gap of stress levels between parents of these children. Government and private organizations, including schools, can greatly improve the quantity and quality of respite care resources available. Individuals and families can fuel these organizations with regular volunteers. In the community at large, people should be mindful of the positive impact uplifts provide, which can be brought on by offering respite care and fostering discussions of uplifting experiences.