Thursday, July 16, 2009

What stresses parents of special-needs children?



A new study provides some unexpected results

Parenting kids with disabilities is stressful. But sometimes pulling apart what elevates parent stress, and how factors related to different types of disability contribute to parent stress, is trickier.

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?

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9 comments:

As a mom of a child with autism, I've learned to cope with my son's behavioural challenges. While it is stressful, it's nothing in comparison to the stress caused to me (and thousands of parents like me who are raising autistic children) as a direct result of government policies.

My stress comes from the fact that our family nearly went bankrupt paying for treatment while he languished on a waiting list. My stress comes from the fact that Ontario's IBI program is a mess, and that the education system is completely overwhelmed by the complexities of dealing with autistic students. My stress comes from living with the knowledge that once the new Benchmarks policy is introduced, my son will surely lose his IBI, and that I will be powerless to do anything about it. My stress comes from knowing that the Charter of Rights and Freedoms has been of absolutely no use to the families living with autism, as the courts have thrown out virtually every case they have brought forward. My stress comes from a government that hands out massive bailouts to car companies while freezing any new funding for SSAH.

For their next study, maybe the researchers should look at how governments cause stress by failing to take the rights of the disabled seriously.

Just a thought.

Hi Laura: I'm playing catch-up with comments. I'm very grateful to you for this thoughtful post, which I'm sure will resonate with all readers who have children with autism.

I wanted you to know that I sent your post to Annette Estes, the author of the study. I hope financial stress/battles to secure government funding is a factor looked at in future research.

Hope to hear more about your son! Best wishes, Louise

As a parent to a child with FAS, I find the behavioral challenges the most stressful. Since FAS is connected to short term memory loss, it is the repetitive nature of parenting, demanding endless patience, that is so challenging. we work endlessly on daily problems and work out strategies to overcome the issues, only to do the same thing over again the next day.
Also advocating constantly for a child whose diagnosis is not necessarily visually clear to others, who then misinterpret bad behavior is stressful.
Deep breath and on I go!

Agree totally with the last comment. We have 3 kids with F.A.S. Our 13 Year-old has great communitive skills but no understanding, She really has that "Invisible" condition.

I am a single mom to a 9 year old daughter with Asperger's, a 5 year old daughter with Severe Autism, and a 22 month old daughter who so far seems neurotypical. The inability to actually be a parent is very stressful. There just is not enough time and energy in a day to be a parent, therapist, bread winner, housekeeper and an individual. I am in complete agreement also the stress caused by lack of government attention to the growing rate of Autism.

Parenting programs are highly effective in teenagers stress and depression recovery. Parenting programs are recommended after assessment and intervention of teenage problems. Program teaches various tips, guidelines and advices to parents to teen stress recovery. For fulfilling special needs and demands of troubled kids treatment centers offer counseling and parenting programs.

I am a teacher and also a mother of 1 year old son who so far seems neurotypical. I am very upset. what should i do ?

Also advocating constantly for a child whose diagnosis is not necessarily visually clear to others, who then misinterpret bad behavior is stressful.
Deep breath and on I go!

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