UC Merced study sheds light on challenges faced by parents of autistic children

Parents of children with autism deal with great amounts of stress. Nikko Da Paz, a Los Banos resident, can tell you.

Da Paz is the mother of a 9-year-old with autism. She also happens to be leading a new study at UC Merced that looks at the mental and physical distress faced by parents of children with autism spectrum disorder.

Da Paz, a doctoral student in psychological sciences, said the objective of her research is to expand the understanding of the disorder and get the parent-health perspective – an angle that is often overlooked.

“There may be a multitude of services, but none of those services are geared toward parents and their mental health,” Da Paz said.

Parents of children with autism, she said, can experience stress levels much higher than parents of children without the disorder.

Through a journal-writing intervention, Da Paz and her research assistants survey parents, mostly mothers, from Merced, Mariposa, Madera and Fresno counties. The study collects and evaluates parents’ measurements of blood pressure, resting heart rate and salivary cortisol, which contains a stress hormone.

Parents are also asked questions about their perceptions of the disorder, their strain and their concerns. Researchers then correlate the parents’ health measurements with their responses.

So far, researchers have collected testimonies from about 80 parents and continue to gather information.

Regarding stress, 80 percent of parents reported that they have felt nervous and stressed in the past month. Sixty-three percent of the parents indicated that their child gets upset easily over the smallest thing, while 59 percent report that their child makes more demands on them than most children.

Da Paz has looked at autism spectrum disorder since the 1980s. As a research project manager at Stanford’s Prevention Research Center, she also studied chronic diseases, such as childhood obesity. Last year Da Paz was appointed to the California State Council on Developmental Disabilities.

Her interest in parent perception began when her son was diagnosed with autism at the age of 3. She soon learned that a caregiver’s health is just as important as the child’s.

Da Paz is working under the supervision of UC Merced health psychology professors Jan Wallander and Jitske Tiemensma.

“It’s a challenging situation to be in,” Wallander said. “Raising children with these needs can create high levels of physical and psychological stress.”

Wallander explained that in the long run, findings of research such as this can lead to publications that can be used by professionals who work with parents of autistic children. Written disclosure activities, such as the one Da Paz is conducting, he said, can aid these professionals in developing coping mechanisms to reduce stress.

Isolation is also a very common feeling for parents of autistic children, Da Paz explained. Many times parents lack support, and feel as is they’re on their own. Da Paz said it does not help that society is quick to judge parental skills. Because autistic children look like any other child, people may not think of the possibility of autism.

Da Paz recalls a time when she used to carry cards in her purse everywhere she went. The cards contained reassuring phrases such as “My child is not misbehaving, my child has autism.” This was one of her coping strategies.

One time, while in a store’s dressing room, her son was “having a moment,” Da Paz shared. As she allowed her son to calm himself down, concerned store employees checked in with her twice. As soon as she handed them the card that explained her son’s autism, the mood changed and people offered help, she said.

“When people know and when they understand, it’s easier to get that support,” Da Paz said. “Sharing knowledge has been helpful.”

It’s not uncommon for parents to apologize and hurry away from a public setting when their child is having a meltdown.

“Most of the time, parents are just trying to do the best they can,” she said.

Even with extreme amounts of stress, the ongoing survey shows that parents try to find positive ways to cope. Forty-nine percent of the parents found comfort in religion or spiritual beliefs, and 57 percent prayed or meditated. About 46 percent report participating in activities to think about their situation less, such as going to the movies, watching TV, reading or shopping. Less than 10 percent reported turning to alcohol or other drugs.

This story was originally published July 31, 2015 at 5:49 PM with the headline "UC Merced study sheds light on challenges faced by parents of autistic children."