In a study published in the journal Autism this month, moms of preschoolers with autism reported significantly higher levels of parenting stress and psychological distress – general worry and anxiety – than moms of preschoolers with developmental delay (which was generally of no known cause).
“We wanted to find out what was driving the higher levels of distress in the moms of children with autism, and measured the impact of children’s problem behaviour and decreased daily-living skills,” says Annette Estes, lead author, clinical psychologist and associate director of the Autism Center at the University of Washington.
In both the autism and developmental delay groups, researchers found problem behaviour was associated with increased parenting stress and psychological distress. But to their surprise, children’s need for greater physical care – in areas like feeding, dressing, toileting and bathing – was not.
“I expected that both together would be related to stress, but the study shows that it isn’t the hard work of caregiving that’s stressful,” Estes says. “Parents seem to be resilient to the hard work – and also to comparing their kids’ daily-living skills to other kids’ skills.”
Estes says the study points to the need to target difficult behaviour – no matter what the diagnosis – as a top priority in early intervention. “Autism affects every domain of functioning, and yet you can’t do everything at once. If you have a child with problem behaviour, that should rise in terms of priority of treatment – because not only will it help the child, it will help the family.” Problem behaviours measured in the study included irritability, hyperactivity, crying, inappropriate speech and not being able to follow rules.
A third somewhat unexpected finding of the study was that the relationship between problem behaviour and stress was less pronounced in the group of moms whose children had autism.
“While the overall stress levels on both measures were higher in moms of children with autism, the relationship between problem behaviour and stress was stronger in the moms of children with developmental delay,” Estes says. “Problem behaviour still accounted for quite a bit of stress in the moms of children with autism, but it doesn’t explain the whole picture.”
More study is needed, she says, to identify other factors that contribute to high stress in moms of kids with autism. Is it the demands of intensive treatment? Is it public misperceptions about the disorder? Is it social deficits that make it harder for parents to connect with their child?
Stress in parents may also change over the lifespan, she notes, and this study only surveyed mothers of preschoolers. Fifty-one children in the study had autism and 22 had developmental delay without autism.
The families were part of a larger study of the neurobiology and developmental course of autism. “Many of the families have been involved in the study for 10 years and we’re starting to get a lot of longitudinal data that can help us answer some of these questions. I don’t think a lot is understood about how stress and coping work over the lifespan, and that’s the next step.”
What do you think of these results? Do you find coping with challenging behaviour in your child more stressful than physical caregiving? Click on Comments to post. If you’re a mom of a child with autism, what most stresses you?