The Influence of Individual and Family Characteristics on Intervention Access for People on the Autism Spectrum: A RI-CART Study

Background: If services were based solely on need, family characteristics would not influence intervention utilization; however, serval characteristics besides symptoms or functioning have been identified as influencing access to services (Bishop-Fitpatrick & Kind, 2017). Few studies have combined several child and family characteristics within the same model to examine which characteristics have the most influence on service utilization for people with Autism Spectrum Disorder (ASD).

Objectives: The goal of this study was to simultaneously examine factors related to service utilization in a large heterogeneous sample community based sample of participants with ASD.

Methods: Participants consisted of 521 individuals (N female = 106) from the Rhode Island Consortium for Autism Research and Treatment (RI-CART) who completed questionnaire information on service usage. Participants ranged in age from 2-20 years (M = 10.30, SD = 4.35). All participants received an Autism Spectrum Disorder (ASD) diagnosis in the community and met criteria for ASD on the ADOS-2. Parents or guardians indicated whether the following services had ever been used: Applied Behavior Analysis (ABA), Individual Family Services Plan/Early Intervention Plan, Individual Education Plan, occupational therapy, speech and language therapy, physical therapy, summer services, other (examples of services described when other selected included social skills and music therapy).

Poisson and logistic regressions were used to examine number of services endorsed and specifically whether ABA had been received. The following independent variables were included in the models: ADOS comparison score, sex, age, Vineland Adaptive Behavior Composite (VABS), age at ASD diagnosis, whether the mother had a partner (i.e. married or living with partner), participant identified as Hispanic, African American, or Asian, English as the primary language in the household, and maternal education (High school or less, some college or BA/BS, advanced degree).

Results: Identifying as Hispanic was associated with reduced likelihood of ABA utilization (OR=0.49, 95% CI 0.99, 0.24) and was associated to a marginal degree with reduced total services utilization (OR = 0.88, 95% CI 1.01, 0.77). Age of diagnosis was negatively associated with both total services (OR = 0.97, 95% CI 0.98, 0.95) and utilization of ABA (OR = 0.84, 95% CI 0.91, 0.77). Full model results are reported in Table 1.

Conclusions: The only family characteristic significantly associated with service utilization was identifying as Hispanic. The more significant barriers faced by this group stand out even when accounting for difficulties specific to families where English is not the primary language spoken in the home. When controlling for ASD symptoms and functioning, the participant’s age of diagnosis was also a predictor of service utilization. Participants who received their diagnoses at older ages were less likely to receive services in both the model predicting total services and when predicting ABA service utilization. These findings highlight the importance of early identification by demonstrating how health disparities at one level of service delivery can have cascading effects.