The Experience of Stress in Caregivers of Children with ASD: An Examination of Stressors

Background:

The caregivers of children with autism spectrum disorder (ASD) have typically reported high levels of stress in previous research. The impact of stress is typically negative for the individual and in turn can impact therapeutic activities directed toward the child. The specific sources of stressors have received less attention than establishing the presence of stress.

Objectives:

To examine the utility of two low cost (caregiver completed) instruments to examine possible stressors in a large sample of caregivers of children with ASD and a comparison group of caregivers of children with other developmental delays. The research validated measures were chosen to represent the types of instruments needed for large scale screening in the public service, rather than for a research, setting. That is, instruments were chosen that caregivers complete, are inexpensive, and require modest professional training to score and interpret.

Methods:

A large state wide sample of children receiving early intervention services through the New York State Part C Early Intervention Program was utilized. The Parenting Stress Index (PSI) and the Pervasive Developmental Disorder Behavior Inventory (PDDBI) were administered at the time of entry to services.

Results:

266 caregivers responded and the average child age of the sample was 2.3 years. High levels of caregiver stress for the ASD group were recorded as has been reported in previous research. Significantly higher stress levels for the ASD group vs the comparison group were found. A significant proportion in the ASD group scored in the clinically elevated range. However, elevated stress level for the comparison group was also recorded. The PDDBI autism severity scores were positively correlated with PSI scores for both the ASD and comparison group, indicating a possible common composite source of stressors. However, analysis of the specific subscales of the PSI and PDDBI associated with child specific characteristics indicated complex interactions with group, such that there were both shared (such as problem behaviors) and separate (such as communication deficits) stressors.

Conclusions:

Appropriate emphasis has been placed on the necessity of early diagnosis and intervention for children with ASD. Less formal attention has been directed at caregiver needs and supports during this process. The use of the PSI as a low cost screener of caregivers to identify individuals experiencing elevated levels of stress in both ASD and other developmental delay groups is recommended. Such screening should be routine to allow caregivers to access appropriate services should they wish. The use of the PDDBI as a low cost instrument allows for identifying possible sources of stressors that can then form the basis of an appropriate caregiver-child assessment and intervention strategy. The present research indicates that there are shared and separate child characteristics that may affect caregiver stress in an ASD and non ASD population that may permit appropriate individualization of services. Results also affirm that caregiver stress is problematic not simply for caregivers of children with ASD.