Stress, Health Behaviors, and Health Outcomes in Caregivers of Children with Autism Spectrum Disorder

Abstract

Autism spectrum disorder (ASD) is a developmental disorder marked by communication limitations and behavioral features that vary broadly across individuals. The identification of ASD has increased by approximately 30% since 2008. As the identification of ASD continues to increase, similarly so does the number of caregivers of children with ASD, making this an important, and growing population. Since children with ASD may have a unique phenotypic profile of behaviors caregivers of children with ASD often face increased levels of stress, and experience higher levels of stress compared to other populations, including caregivers of children of other developmental disabilities. Chronic stress is a known risk factor for a wide range of chronic diseases, including cardiometabolic and mental health outcomes. Chronic stress may also influence health behaviors such as smoking, alcohol use and physical activity through coping mechanisms. The occurrence of chronic diseases and their risk factors in caregivers of children with ASD has not been well studied. There is a need to further investigate specific child behaviors as correlates of caregiver health and health behaviors.

This project included two studies. The first study examined stress in caregivers of children with ASD and focused on specific child behaviors, within a locally-recruited sample of N=116 caregivers of children with ASD aged 3-17 years. Caregivers completed the Autism Behavior Inventory-Short as a measure of child behaviors, and the Parent Stress Scale as a measure of total parenting stress. We used linear regression to determine the association between specific child behaviors and caregiver stress. We hypothesized that caregivers of children with higher levels of behavioral difficulties (social-communication, mental health, repetitive behaviors) will report higher levels of self-reported stress, compared to caregivers of children with fewer behavioral difficulties. More behavioral difficulties in each domain was associated with higher levels of parental stress.

For the second study, data on health behaviors and health outcomes from the National Health Interview Survey 2016-2017 cycles were used to compare caregivers of children with ASD to caregivers of typically developing children and children with other disabilities (N=10,162). For the child, information on child’s diagnosis was reported by the parent. For the parent, health risk behaviors and health outcomes were self-reported. We used logistic regression to determine effects and hypothesized that caregivers of children with ASD will report more adverse health behaviors (i.e., smoking, alcohol use, less physical activity) compared to caregivers of typically developing children and caregivers of children with other disabilities. We also hypothesized that caregivers of children with ASD will have more cardiometabolic outcomes (i.e., type 2 diabetes, obesity, hypertension, high cholesterol) and more mental health symptoms compared to caregivers of typically developing children and caregivers of children with other disabilities. Compared to typically developing caregivers, caregivers of children with ASD had higher odds of physical inactivity, smoking and tobacco use, and heavy drinking, though these relationships varied when compared to other disability groups. The effect estimates for these relationships also were of low magnitude and were relativity imprecise. Similar patterns of association were shown for health outcomes compared to caregivers of children with other disabilities.

Overall, our findings suggest that it is the culmination of the child’s phenotype that results in increased caregiver stress, rather than individual, unique behaviors. This may support the idea that is the total experience of all behaviors that is important, including those not required for an ASD diagnosis, but that are commonly shared with other developmental disorders. Furthermore, caregivers of children with ASD had more adverse health behaviors and outcomes compared to caregivers of typically developing children, but not when compared to other disability groups, though these estimates had low magnitude and were relatively imprecise. Caregiver stress should be considered for potential interventions to improve their health. Future studies should seek to better understand why child behaviors influence caregiver stress and how caregiver stress may influence health risk behaviors and health outcomes.