Ask any mother and she’ll tell you that raising a preschooler is no easy task. Now imagine what it must be like to bring up a child with autism or a developmental delay.
Researchers at the UW’s Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children’s problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism.
“Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers,” said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
Surprisingly, the research also found no link between a child’s decreased daily living skills and increased parental stress and psychological distress.
“This finding was counterintuitive,” said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. “If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay.”
These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.
For this study parental stress was defined as being the stress directly related to a person’s role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.
The study included 73 mothers and their children — 51 of the youngsters had an autism spectrum disorder and 22 had developmental delays. The families were part of a larger study exploring the neurobiology and developmental course of autism. The children in the stress study were predominantly male, white and about 3 1/2 years old when data was collected.
Parents filled out a number of detailed surveys that measured parenting stress, psychological distress, problem behaviors and adaptive functioning level. The last charted a child’s daily living skills in such areas as dressing, feeding, using the toilet, bathing and helping with household chores.
The study, Estes said, looked at psychological stress, not psychiatric disorders in mothers.
“We were not diagnosing disorders and our sample of parents likely did not include the most distressed parents, those who did not have the resources to take the time to participate in a research study or those who were probably too busy and stressed raising a disabled child to participate.
She noted that problem behavior needs to be a crucial target in treating children with autism and developmental delay.
“We need to focus on it because it appears to have the potential to disrupt the family, parenting and the child. While problem behavior is not a core element of autism, it might rise to the top of the issues that have to be dealt with first in a clinical setting,” Estes said. “Help in what we call family adaptive functioning is what we need to figure out in these cases. How to help families is important because high levels of stress and psychological distress can interfere with early identification of autism and interventions which are delivered by parents. There’s another good reason to do this: Parents who feel supported can better support their children.”
The paper has been published in the online edition of the journal Autism and the research was funded by the National Institute of Child Health and Human Development. Co-authors are Jeffrey Munson, an assistant research professor in the UW Autism Center; Geraldine Dawson, a UW emeritus professor of psychology who is now the chief science officer of Autism Speaks; Elizabeth Koehler, a former UW biostatistics graduate student; and Xiao-Hua Zhou and Robert Abbott, UW professors of biostatistics and educational psychology, respectively.