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Caring for children with autism: Avoiding time pressure for better mental health?

Posted Dec 25 2009 10:07pm

Caring for children with autism, especially those with severe autism, is often extremely challenging for the entire family. Some children with autism require continuous monitoring throughout their childhoods and beyond, and the costs associated with the most common interventions and assessments can place major strains on the family’s resources. While some studies have found that mothers of children with autism indeed experience more psychological stress than other mothers, less is known about which factors contribute to such psychological difficulties. In the latest issue of the Journal of Autism and Developmental Disorders there is a very interesting study conducted in Australia that attempted to identify the protective as well as contributing factors to psychological distress among mothers caring for children with autism spectrum disorders.

The study included 216 mothers of children with autism (age 6 to 17, mean age 11). Eighty eight percent (n=190) of the children were boys, and 21% of the mothers were single parents.  All children were diagnosed based on DSM-IV criteria by a multidisciplinary team. After mothers the enrolled in the study, they were asked to complete a series of questionnaires and a 24-hour activity diary during a typical weekday or weekend day. Most of them (70%) completed the diary on a weekday.

The authors were interested in exploring some specific questions. First, they wanted to know the overall rate of distress among these mothers. To this end, the mothers completed a measure of general psychological health as well as a measure of depression symptoms. The authors were also interested in knowing whether psychological health and depression in the mothers was associated with 1) how much social support they received, 2) the level of behavior problems on the part of the child, 3) how much time the mother spent in care giving activities; and 4) how much time pressure was experienced by the mothers.  All of the variables were measured by a self-report questionnaire except for the total amount of time spent in care giving activities, which was determined based on the 24-hour diary completed by the mothers.

The results:

General Findings:

1. On average, mothers reported spending 6 hours per day caring for their children, and as expected, this was associated with the age of the child; those with older children spent less time than those with younger children. Also as expected, total hours was associated with severity of autism (the more behavior problems the more hours of time care required).

2. Fifty five percent (55%) of mothers scored in the distress range for a general metal health questionnaire, and 48% scored above the healthy cutoff on a depression scale.

What contributed to maternal mental health problems?

General Maternal Mental Health:

1. Surprisingly, severity of behavior problems did not contribute to maternal mental health problems.

2. Social support was associated with lover levels of mental health problems.

3. While controlling for support and behavioral problems, time pressure, but not total time, was associated with higher levels of mental health problems.

Maternal Depressive Symptoms:

1. Social support was also associated with lover levels of depressive symptoms.

2. Severity of autism (e.g., more behavior problems) was associated with higher rates of depressive symptoms.

3. While controlling for support and behavioral problems, time pressure, but not total time, was associated with higher levels of depressive symptoms.

It was not surprising at all that social support was a major protective factor for mothers. The more mothers felt they received social support, the less depressive symptoms they endorsed. It was also not surprising that having more challenging children (with more behavior problems) experience higher symptoms of depression, but it was a bit surprising that this was not the case for other mental health symptoms. What was really surprising is that it was time pressure, but not total time, that contributed to mental health problems including depressive symptoms. That is, it didn’t matter how many hours the mother spent caring for the child – this was not a contributing factor to maternal distress. What was important is how much time crunch the mothers felt. This raises a very interesting issue: it is not uncommon for mothers of children with disabilities, including mothers of children with autism, to have very structured and “packed” days that require the juggling of very busy schedules (coordinating services, schools, playgroups, etc., etc.). The results suggest that it may not be how “packed” the day is that may contribute to stress, but whether the schedules and activities are designed in a way that creates ‘time pressure,’ or a general sense of ‘not having enough time’ on the mother. However, there are a couple of issues that should be noted.  First, as with any correlational study, it is impossible to tell for sure ‘what causes what’. For example, it’s possible that those mothers with more mental health difficulties also ‘perceived’ themselves as having more time pressure whether true or not. In such a case, it is not the increased time pressure that is causing distress, but distress may be causing the ‘perception’ of increased time pressure. It would have been interesting if the authors had done a time pressure analysis of the 24-hour diary. Second, there are a number of variables that could also be at play. For example, the number of siblings in the family was not included in the analysis. It is possible that those mothers that were taking care of more children also felt the most time pressure and thus had higher distress.
Sawyer, M., Bittman, M., La Greca, A., Crettenden, A., Harchak, T., & Martin, J. (2009). Time Demands of Caring for Children with Autism: What are the Implications for Maternal Mental Health? Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0912-3

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