Characterizing the Relationship Between Autism Severity and Aberrant Behavior on Caregiver Strain and Family Empowerment in a Minority Population

Background: Caregiver strain, a measure of burden on emotional and physical health, is significantly higher among parents of children with autism spectrum disorder (ASD) than other developmental disabilities.  High levels of parental strain are associated with poor family functioning, inadequate child utilization of mental health services and lower quality of life reported by the parent.  Importantly, ethnic disparities in the utilization of mental health services are also well documented and while parent-centered approaches have been shown to be efficacious in Hispanic samples, they are often underutilized. It is therefore necessary to better understand factors, such as parental stress, that may affect service utilization in order to improve long term outcomes for minority families affected by ASD.

Objectives: To characterize caregiver strain, sense of family empowerment and the relationship with symptom severity and cognitive ability in a minority sample of children with ASD.

Methods: Forty-one Black and Hispanic children between the ages of 5 and 12 participated in this study. All children met DSM-5 criteria for ASD based on a consensus diagnosis, which included a psychiatric evaluation, the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R). Standardized measures of cognitive functioning were also obtained. Caregivers completed the Caregiver Strain Questionnaire (CSQ), the Family Empowerment Scale (FES), and the Aberrant Behavior Checklist (ABC). The CSQ measures negative occurrences associated with caring for a child with emotional disturbances (i.e., missed days at work), as well as parental externalizing (i.e., anger) and internalizing (i.e., sadness and guilt) feelings relating to their child. The FES measures attitudes, behaviors, and knowledge of family empowerment. The ABC measures behaviors observed in individuals with developmental disabilities across five subscales: Irritability, Lethargy, Stereotypy, Hyperactivity, and Inappropriate Speech.

Results: The relationship between variables was examined using Pearson correlations. CSQ total scores were significantly correlated with ABC total scores (r=.588, p<.001). The CSQ Internalizing subscale was significantly correlated with several ABC subscales, including Irritability (r=.529, p<.001), Lethargy (r=.62, p<.001), Stereotypy (r=.382, p=.014), and Hyperactivity (r=.571, p<.001). The CSQ Externalizing subscale was significantly correlated with ABC Irritability (r=.426, p=.005) and Hyperactivity (r=.550, p<.001). CSQ total score was negatively correlated with the Attitude (r=-.439, p=.004) and Behaviors (r=-.318, p=.043) subscales of the FES. The FES Knowledge subscale was not correlated with the CSQ. There was no correlation between ADOS-2 total raw scores, ADOS-2 severity scores, or IQ on caregiver strain or sense of family empowerment. Caregiver report did not differ significantly between ethnic groups.

Conclusions: Results indicate that there is a strong relationship between caregiver strain and aberrant behavior in minority families affected by ASD. Children’s externalizing behaviors were strongly associated with internalizing symptoms in caregivers. Less strain in caregivers was also correlated with empowering attitudes and behaviors, although greater knowledge was not associated with lower levels of strain. Importantly, ASD symptom severity and cognitive ability