Parents of Children With Autism Report High Stress LevelsLast Updated: July 17, 2009. Behavior problems, not additional caretaking, seem to cause the distress.
By Serena Gordon
FRIDAY, July 17 (HealthDay News) -- Anyone who has tried to quell a 3-year-old's temper tantrum knows that dealing with small children can be stressful, but add an autism spectrum disorder to the mix and the likelihood of parental stress significantly increases.
But a new study in the July issue of the journal Autism suggests that it's not the additional daily caretaking tasks that add stress, but the behavioral issues common in children with autism.
"Mothers of children with autism reported more parent-related stress and psychological distress," said study author Annette Estes, a research assistant professor of psychiatry and behavioral sciences at the University of Washington in Seattle. "I think that parents of kids with autism are resilient in many ways, and it's not the hard work of daily living that's causing the stress. The thing that's most difficult for parents are the problem behaviors."
Autism is a developmental disorder that affects communication and social interaction skills. As many as one in 150 American children have an autism spectrum disorder, according to the Autism Society of America. Because autism is a spectrum disorder, individual children may range from mildly affected to severely affected.
Children with autism may have unusual language or their own communication patterns that can be difficult for others to understand. Some of the possible problem behaviors are: irritability, agitation, crying, social withdrawal, lethargy, hyperactivity and inappropriate speech.
To assess whether it is the daily tasks of living -- such as feeding, dressing, toileting -- or the behavioral issues that drain parents, Estes and her colleagues compared a group of 51 preschool-aged children with autism to a group of 22 age-matched children with other types of developmental delays. Both groups of children require extra daily care, but the children with autism may present more behavioral issues because communication is a skill in which they are developmentally behind their peers.
On a scale of zero to four, the average parenting stress score for parents of children with autism was 2.3, while the score for those with children with developmental delay was 2.04, the researchers found. Parents of children with autism were also more likely to report psychological distress, with an average score of 0.64 compared to the development delay group's average of 0.35.
"We wanted to know how to support families and help the children because there are many domains you can target with interventions," explained Estes. These findings suggest that "if you're making decisions about what types of difficulties to address first, especially if a parent is feeling overwhelmed, starting with problem behaviors might help," she noted.
"This study validates what we see and what we experience," said Lee Grossman, president and CEO of the Autism Society and a parent of a child with autism.
One reason that parents of children with autism may be so stressed, he said, is that every child with autism is different, so there's no standard treatment of care. "Parents don't have many avenues to go to for support," he said.
One of the most important things a parent can do to help reduce stress is to make sure your child receives appropriate help, and if one intervention isn't working, he suggested trying another. But sometimes it takes time to notice that a treatment is working. "Keep it up, because there's often a cumulative effect of the trying you're doing that seems to eventually add to the improvement," said Grossman.
Also, many children with autism have painful underlying medical conditions, such as stomach problems, that they may be unable to communicate to you or their doctor, so be sure to have a good medical workup periodically.
And, he said, it's important to set up a support system and connect with other families of children with autism. "You need to have an outlet and some form of respite so that autism doesn't consume you," said Grossman.
Divorce rates are high in families with an autistic child, so try to stay connected to your spouse, he said. "The way you see autism will be different, so you need to be patient with each other, but stay involved," he advised.
To read more about autism and family stress, visit the Autism Society of America.
SOURCE: Annette Estes, Ph.D., research assistant professor, psychiatry and behavioral sciences, University of Washington, Seattle; Leo Grossman, president and CEO, The Autism Society of America; July 2009 Autism