Enrollment in Early Intervention Associated with Increased Parental Stress in a Large Cohort of Parents of Young Children at Risk for Autism Spectrum Disorder

Background: Efforts to identify and treat developmental delay in young children require strengthening caregiver capacity to support their child’s needs. While an explicit goal of Birth to Three Early Intervention (EI) services is parent support, there is little data on the impact of such services on parental stress.

Objectives: To determine if low income, urban families involved in EI services experience lower levels of parental stress than those not engaged in EI services.

Methods: We analyzed cross-sectional data from 150 parents/guardians of children ages 15-27 months with confirmed autism risk at the time of enrollment in a large trial. Families were recruited from urban pediatric clinics in Boston, Philadelphia, and New Haven. We compared baseline levels of self-reported parenting stress (Parenting Stress Index – Short Form (PSI-SF)), Social Support (MOS-SS), and Negative Feelings toward Parenting (FIQ) among families participating in EI and those not involved in EI. Regression analysis was used to assess relationship between EI enrollment and measures of parental stress, while adjusting for prematurity (gestational age <37 weeks) and severity of child’s delays using the Adaptive Behavior Assessment System (ABAS).

Results: In this sample of low-income, minority families, 46.7% were receiving EI services. Family demographics and severity of child delays were similar across groups. Parents of children enrolled in EI reported increased stress across multiple measures. We observed significant differences in Social Support (MOS-SS) and Negative Feelings toward Parenting (FIQ), and a trend toward differences in parenting stress (PSI-SF) (adjusted mean difference, p-value; -0.38, 0.02; 1.66, 0.04; 7.45, 0.08 respectively).

Conclusions: Parents participating in EI services reported lower levels of social support and higher levels of stress and self-blame than parents whose children were not receiving such services, even after adjusting for autism severity. A possible explanation is that new demands related to obtaining developmental services and the acknowledgement that a child has significant delays may place additional burden on caregivers.