Barriers to Participation in a Parent-Mediated Intervention for 12-Month-Old Infant Siblings of Children with ASD

Background: As more evidence emerges that optimal developmental outcomes for individuals with autism spectrum disorder (ASD) are associated with the earliest possible onset of intervention in the infant and toddler years (Rogers et al., 2012), it is essential to identify barriers to parent participation in very early intervention programs. Despite the strong evidence for parent-mediated early interventions for ASD (e.g., Bradshaw, Koegel, & Koegel, 2017; Carter, et al., 2011), caregivers may sometimes elect not to take advantage of treatment services that are available to them.

Objectives: The current study aims to describe barriers to enrollment into an early parent-mediated intervention trial as part of a longitudinal investigation of infant siblings of children with ASD.

Methods: As part of a prospective longitudinal design, 23112-month-old infants were given an assessment of social-communication skills (Communication Symbolic Behavior Scales – Behavior Sample) and autism symptomology (Home and Clinic Systematic Observation of Red Flags for ASD (SORF) and ESAC). Infants who exhibited early signs of ASD and delays in social-communication during the 12-month assessment based on the study’s eligibility criteria (i.e., scoring above the screening threshold for 2 out of the four measures) (N=47) were offered enrollment into a randomized controlled trial of a parent-mediated early intervention for ASD. Of these 47 infants, 29 (62%) caregivers enrolled into the treatment study and 18 caregivers (38%) declined treatment. We compare infant clinical characteristics, family demographics, and older sibling autism symptom severity across families who agreed to treatment and those who did not in an effort to identify those variables that may serve as barriers to accessing caregiver-mediated intervention.

Results: Results revealed significant differences in several demographic characteristics of the caregivers who elected not to enroll in the treatment study. Specifically, participants who declined treatment were characterized by greater maternal full-time employment (p < .01), higher level of education (p < .05), and living further from the clinic (p < .01). Child birth order also had an impact on enrollment statistics, with families who had more than two children (including the infant and older child with ASD) being less likely to enroll than families with only two children. Surprisingly, there were no significant differences in clinical presentation across infants who enrolled into treatment compared to those who did not.

Conclusions: In summary, findings highlight a number of barriers to enrollment into early intervention strategies for children at high risk for autism spectrum disorder, most of which are related to caregiver resources. In this study, one component of the treatment required parents to come to the clinic once per week with their infant, potentially leading to families with limited time (full-time work and/or more than two children) to decline participation. These data suggest that in-home treatment for young siblings of children with ASD may be critical in broad dissemination of infant interventions. Knowledge of such barriers by professionals may contribute to the use of additional techniques for increasing enrollment into important intervention strategies and improving outcomes for young children with social communication deficits.