Sigan Hartley, PhD studies developmentally disabled individuals. For the past 5 years, she has been working with children with autism spectrum disorder (ASD) and their parents, asking: Why are some families that deal with these challenging situations thriving, while others fall apart?
Hartley, associate professor in Human Development and Family Studies at the University of Wisconsin–Madison, and a researcher at UW's Waisman Center,opens in new window is a clinical psychologist by training and a member of the APA. She hopes her project assessing the well-being of parents of children with ASD, which is expected to wrap up this year, will lead to the development of interventions and psychosocial programs for families.
Hartley would like to help parents enjoy their own lives and relationships more. She says, "We see that the well-being of the child is strongly linked to the well-being and development of the family, the parents in particular. The outcomes are related."
Hartley's study, which has led to a number of publications, recognizes the challenges parents face when they raise children with ASD. The children's behavior can be disruptive. Their care is expensive, often requiring various therapies, and at the same time, their needs can interfere with the parents' ability to work and care for themselves.
On average, parents of children with ASD have less marital satisfaction and higher divorce rates than parents of children without disabilities, but many of these parents do stay married and often report that their marriages are "highly satisfying," Hartley has found.
What are those satisfied couples doing right? That's what Hartley wants to know. Her team has recruited nearly 200 families with children with ASD, and a comparable comparison group, from a good-sized swath of southern Wisconsin. Participants kept a diary for 14 days. Parents were tasked with separately gauging their child's symptoms and behavior, as well as the tone and topic of "their most meaningful or important daily couple problem-solving interaction."
The study revealed that these couples by and large are great at addressing the daunting array of tasks they must execute as parents of an ASD child, "putting out the flames of everyday fires," as Hartley puts it. What they wind up sacrificing is their carefree time together. Study subjects spent about 21 fewer minutes together daily than parents in the control group. "They're not taking the time for intimacy, and that's not something we necessarily see in other couples," she says.
These couples weren't typically reporting negative experiences; rather, "they were reporting fewer positive ones than the comparison group," Hartley says. "If you're dealing with this higher level of everyday childcare demands—IEP meetings, therapists—your positive couple time may be going by the wayside. It's not that the stress happened from within the couple, not that they are disagreeing over fundamental issues, or that one partner is constantly less committed, or other reasons that can destroy relationships. When couples undergo stressors—work, money, kids—that stress can seep into the relationship."
The question Hartley wants to address next is, "Can we help couples carve out some way to engage in positive interactions?" Examples she gives are emailing a joke to your partner or reserving the last 5 minutes of the day to talk about things unrelated to work or childcare.
Many small, helpful gems have already emerged from the study. For instance, mothers of children on the autism spectrum who had a higher average quality of sleep across a 2-week period reported that their children had less severe emotional and behavioral problems than mothers who had a lower average quality of sleep. Getting enough sleep had a major impact on parents' moods and on their perceptions of how difficult their job of parenting was. "Sleep is one of the most powerful predictors of how people do during the day," Hartley says.
She and her collaborators made a point of capturing participants from urban areas like Milwaukee, 80 miles away, as well as those from smaller cities and more rural settings. "We do travel, up to two to three hours," she says. Notably, families with children with ASD were eager to participate.
"They want to tell their story, they want to give back to other families who may be experiencing the joys and also the struggles" of raising children with ASD, not all of which are particular to autism, she says. Hartley hopes to continue to follow these families for a longitudinal study of how their relationships do over time.
Citing findings from her other work, Hartley notes that some parents with developmentally disabled children have distinctive challenges of their own. For example, some mothers of children with the heritable Fragile X syndrome,opens in new window who themselves are not developmentally disabled, may still be genetically susceptible to anxiety, depression and other conditions. Hartley's Fragile X team has tried to assess the extent to which these underlying predispositions can shape outcomes, she says.
And in another long-term, multisite study, Hartley is also looking at adults with Down syndrome,opens in new window who are known to age more rapidly than the general population. Their condition derives in most cases from an error in cell division that gives them a third copy of chromosome 21, which contains a gene that's involved in the production of the amyloid precursor protein (APP). Accumulation of amyloid-beta, a molecule shed by APP, is strongly correlated with Alzheimer’s disease, and is thought to be an early brain change in the process leading to Alzheimer's.
"This is a group that, by the time they're in their 40s, will virtually all show brain neuropathology associated with Alzheimer's. Half will go on to have clinical signs of Alzheimer's by the time they're in their mid-60s, which is substantially higher than for the general population," Hartley says.
Not only are individuals with Down syndrome "highly deserving of research" aimed at ameliorating their brain pathology, but "by tracking this group, we can also learn a lot that will help us more broadly understand the disease," she says. "The goal for this work is to discover ways to intervene early on the pathway to Alzheimer's disease and to develop programs to support lifestyles linked to optimal aging outcomes."
Hartley, who grew up in Madison, got involved in research as an undergraduate student. "I was just so drawn to that scientific inquiry, thinking of the big questions, thinking through how to set the questions and collect the data."
Over time, as she pursued her education at UW and the University of Wyoming at Laramie, she developed a real focus on connecting that process to what she was seeing in her clinical training.
"I want to be sure I'm researching these questions I observe in people, and in families, in ways that can be translated into improving interventions," she says.
Sigan Hartley is investigating how the lives of children with autism spectrum disorder and their parents connect and influence one another, in terms of function and well-being.
