For mothers of children with autism, the caregiving life proves stressful

Common wisdom tells us that to be the mother of a child with autism is to assume a heavier caregiving burden in life.

Now, in companion studies, the daily physiological and psychological toll on mothers of adolescents and adults with autism is documented, revealing patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in caregiving than mothers of children without disabilities.

“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin–Madison’s Waisman Center who was involved with both studies.

The new studies, which currently (November 2009) appear online in the Journal of Autism and Developmental Disorders, probe the daily experiences of mothers of adolescent and adult children with autism over a period of eight successive days. On four of those days, the researchers measured levels of maternal cortisol, a hormone released by the adrenal gland in response to stress. Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress.

“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, director of UW–Madison’s Waisman Center, an authority on families of children with developmental disabilities, and the leader of an ongoing longitudinal study of families of individuals with autism. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”

Changes in the pattern of cortisol expression in the general population have been shown to be associated with chronic health problems and can influence such things as glucose regulation, immune function and mental activity.

Autism is a widespread condition in the United States, affecting an estimated 1 in 100 children. It occurs on a spectrum of severity and is characterized by deficits in communication and social skills, and the presence of rigid, repetitive behaviors. Many with the condition require lifelong care.

For the “daily diary” study, mothers were contacted at the end of each day and asked a series of questions about time use, episodes of fatigue, leisure activities and stressful events. The data were compared with a nationally representative sample of mothers of children without disabilities drawn from a study known as MIDUS (Study of Midlife in the U.S.), directed by Carol D. Ryff, a UW–Madison professor of psychology.

For a mother of a child with autism, daily life includes at least two more hours of childcare than mothers of children without disabilities. These mothers were also more than twice as likely to be fatigued and three times as likely to experience a stressful event each day. Importantly, nearly a quarter of their days included work interruptions versus fewer than 10 percent of days in the comparison group, suggesting a potential economic impact.

The new findings also reveal a thread of resilience. Compared to mothers of children without a developmental disability, mothers of children with autism were just as likely to have daily positive interactions, serve as volunteers and lend support to others within their social networks.

Together, argue Seltzer and Smith, the research results demonstrate the need to develop programs and networks of support for families of people with autism throughout life.

“We need to find more ways to be supportive of these families,” says Smith, noting that the added caregiving burden and potential health problems associated with chronic stress can be a devastating combination. More and better programs of respite for parents and flexible policies on the part of employers, she says, are good places to start. In addition, Seltzer notes that interventions that reduce behavior problems can improve the health and quality of life of both the child and the caregiving mother.

Both studies were funded by the National Institute of Aging, with additional support from the National Institute of Child Health and Human Development. In addition to Smith and Seltzer, co-authors of the daily-diary study include Jan S. Greenberg, Jinkuk Hong and Somer L. Bishop, all of UW–Madison, and David M. Almeida of Pennsylvania State University. Co-authors of the cortisol study include Greenberg, Hong and Almeida, as well as Christopher Coe of UW–Madison and Robert S. Stawski of Pennsylvania State University.