Anyone who has ever survived being a teenager should be well aware that parenting a teenager can be no easy feat. But factor in a diagnosis of autism spectrum disorder (ASD) or intellectual disability (ID), and you’ll likely have the recipe for a unique set of challenges to the entire family unit.
According to autism expert Jan Blacher, a distinguished professor in the Graduate School of Education at the University of California, Riverside, the effects of those challenges went largely understudied for years while medical professionals blamed mothers of children diagnosed with ASD for their kids’ disorders.
Beginning in the 1950s, doctors turned to psychiatrist Leo Kanner’s “refrigerator mother” theory as evidence that a lack of maternal warmth could essentially cause autism. It wasn’t until the mid-1960s when psychologist Bernard Rimland, among others, began to discredit Kanner’s theory, instead popularizing the idea that autism could be rooted in neurological development, or even genetics.
Decades later, the race to find autism-linked genes continues. But it doesn’t yet benefit families of kids with ASD, said Blacher and her research colleague, UCLA’s Bruce L. Baker.
Within those families, the impacts of raising children with autism hit mothers especially hard, resulting in what Blacher and Baker refer to as “collateral effects.”
In a study recently published online in the Journal of Autism and Developmental Disorders, the researchers found that mothers of teenagers with ASD or ID reported higher levels of stress and other negative psychological symptoms — think depression or anxiety — than mothers of teenagers with typical development, or TD.
Those levels climbed even higher when teenagers with ASD or ID also showed signs of clinical-level disruptive behavior disorders.
To find out how such disorders affected mothers, Blacher and Baker surveyed 160 13-year-olds and their families. Eighty-four of the study’s teenage participants were classified as having typical development, or TD; 48 as having ASD; and 28 as having ID.
As the director of UCR’s SEARCH (Support, Education, Advocacy, Resources, Community, and Hope) Family Autism Resource Center, Blacher works with kids of all ages with ASD. She said this study, however, is special because it focuses on a pool of adolescents who are the same age.
“Usually when studies have looked at the impacts of autism on families, the children involved have reflected wide ranges of ages,” she said. “Here, we’ve eliminated the variance related to developmental stage.”
Blacher and Baker first assessed mothers and their 13-year-olds during in-person visits at their research site, and later asked mothers to complete separate questionnaires privately to measure youth behavior problems and parental well-being.
“ASD group mothers scored highest on each of the two distress indicators,” the researchers wrote, adding that ASD group mothers’ levels of stress and psychological symptoms did not differ significantly from those of ID group mothers.
The findings harken back to research demonstrating that parents of children with ASD have reported levels of stress consistent with those of individuals who experience post-traumatic stress disorder.
What’s more, mothers’ levels of parenting-related stress and other psychological symptoms were amplified by the presence of one or more clinical-level behavior disorders, Blacher and Baker said.
“The most common disruptive behavior disorder is attention deficit hyperactivity disorder, or ADHD, but children with autism can also show signs of oppositional defiant disorder, depression, and anxiety,” Blacher said. “The disorders that are most disruptive to parents are those we describe as ‘acting out’ disorders and involve behaviors like not following rules, hitting, screaming, arguing, lashing out, and breaking things.”
Still, the researchers emphasized that parents who face childrearing challenges need not resign themselves to lifetimes of mounting stress. The mothers they studied who demonstrated more resilience had one thing in common: an optimistic outlook on life.
Using the Life Orientation Test, which assesses individuals’ optimism or pessimism, Blacher and Baker found that mothers who were more optimistic — believing that good rather than bad things would happen to them — experienced fewer negative impacts associated with parenting a child with ASD or ID and comorbid behavior disorders.
In those cases, a more positive outlook on life became a buffer against parenting-related stressors.
“It’s in the face of stress when optimism really becomes important,” Blacher said. “A mom that has a high level of optimism is going to be able to better weather stress and be better prepared mentally for the challenges ahead.”
This research was funded by a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, one of the National Institutes of Health in the U.S. Department of Health and Human Services.
This article was first published in UCR Today, full piece here.