Susana Ruiz worked in special education before her children were born, providing at-home treatments for young children with autism. Even with her professional expertise, after her younger son, Santiago, was diagnosed with autism at age 2, she found that parenting him was stressful.
“I realize now how extremely challenging and grueling it is on our bodies to care for a child with autism,” Ruiz said. At intervals since her son was diagnosed in 2013, she has struggled with depression, frustration, grief and trauma. When Ruiz learned about a Stanford study of resilience training for parents like her, she was eager to participate.
The study, published recently in the Journal of Autism and Developmental Disorders, showed that parents of kids with autism benefit from a program of scientifically backed strategies to build acceptance, mindfulness, optimism and resilience — and to improve family relationships.
“Parents of kids with autism experience more parenting-related stress than those whose children don’t have autism, or even than parents whose children have other developmental disabilities or medical conditions,” said Stanford autism expert Grace Gengoux, PhD, the study’s senior author.
Rather than providing generalized support, her team decided to teach techniques that had been shown to build mental health resilience for people in other high-stress situations. “We wanted to give parents exposure to a menu of science-based options that they could try out with some coaching,” Gengoux said.
When she joined the study in 2018, Ruiz hoped to learn how to bring more balance to her life. Her family, including her husband, Manuel, and older son, Marco, 16, have helped care for Santiago, 10, whose nickname is Santi. But because Ruiz is a full-time parent while her husband works outside their home, she has always played the biggest role.
In the early days, when Santi couldn’t talk and struggled to express himself, she was the main mediator between her little boy and the world. If Santi had a tantrum, his mom was usually handling it; if he had a therapy or treatment appointment, she was in the driver’s seat. “The day in, day out was very grueling,” Ruiz said.
The study included 34 parents. Half of them began the resilience curriculum immediately after enrolling in the study and completing questionnaires, and half were assigned to a delayed treatment control group. All volunteers had a child with autism who was 4 to 10 years old when the research began.
Parents met weekly for eight weeks, in groups of six to nine participants and a facilitator. Each session covered tactics for building resilience, which is the ability to cope flexibly with difficulty. Parents chose a “primary resilience strategy” to practice throughout the study, such as physical exercise, mindful breathing or taking self-compassion breaks, but were encouraged to try other coping strategies to figure out what worked best for them.
Before and after participating in the curriculum, the parents answered questionnaires about their levels of depression, anxiety and stress, as well as their resilience and coping abilities, the functioning of their families and marriages, and their perceptions of their children with autism.
Parents in the treatment group showed more resilience improvement than those in the control group, including more mindfulness, optimistic thinking, self-compassion and self-efficacy, the belief in one’s own capacity to meet challenges. The treatment group also had less anxiety. The improvements were large enough to shift participants out of the elevated or stressed ranges of the assessments and into normal stress levels. Also, the levels were sustained when parents were re-tested two months after the intervention ended.
“We knew parents were appreciating it and the clinicians teaching the intervention felt it was working,” Gengoux said. “But to see the data on how big a difference it made in parents’ perceived resilience and self-efficacy, and reductions in anxiety and stress, was really encouraging.”
Identifying circles of strength
Susana Ruiz said she gained solidarity from practicing stress management with other parents of kids with autism.
“We could talk about some of the heavy things we carry in a very open and safe place,” Ruiz said. “It felt nice to be in a room of parents experiencing that, and to know you’re not the only one and it’s not something you’re exaggerating.”
After her son’s diagnosis, Ruiz worried about how much he might progress. Would he learn to speak, for instance? What would happen if he didn’t? “I was stuck in that cycle,” she said. The curriculum helped her accept the reality of Santi’s autism and bring her mind more to the present.
Leaning how to handle negative thoughts helped change her reactions to her son’s outbursts. Instead of thinking, “This is horrible! Will it ever get better? I feel guilty for thinking it’s horrible!” she learned to frame her experience in a more positive light, such as, “This is just one moment, and it is not the worst thing.”
Ruiz’s “resilience recipe,” crafted during the class, included several activities, but her favorite was meditating on a piece of artwork she created showing her “circles of strength.” Her name is in the center of brightly colored concentric circles labeled with the names of her most important support people, a reminder to draw strength from them when parenting Santi is difficult. “I look at it often,” Ruiz said.
Gengoux said it’s particularly helpful for parents to try several different stress-reduction methods because what works for one person might not work for another. “The obvious next step is to try a program like this online,” she said. Although the program she tested is not currently being offered, Stanford autism experts offer a generalized support group for parents during the school year, which has met online since the pandemic began. More resources for families, including additional community-based support groups, are available through Stanford’s Early Support Program for Autism.
Ruiz said that while Santi still faces autism-related challenges, his family increasingly enjoys his contributions to their life. “He’s behind cognitively but is making great strides and is a super social kid,” she said.
Santi talks a lot and is engaging more in school. He loves bowling, golfing, swimming and baseball, and is driven to find out who shares these interests.
“Out and about in the neighborhood, he likes to ask people questions. At first, he would only ask ‘Do you like bowling?’ but I prompted him to ask general questions,” Ruiz said. “Now he’ll say, ‘How’s your day going?’ … It’s so nice to see him turn someone’s frown into a smile.”
Family photo, showing Manuel, Santiago, Marco and Susana Ruiz, by Kenneth Drachnik.
Program improves resilience for parents of kids with autism is written by Erin Digitale for scopeblog.stanford.edu