Disparities in Utilization of Services Around the Time of Autism Spectrum Disorder Diagnosis

Background: Many studies have pointed to the importance of early identification and treatment of ASD. However, despite mounting evidence, substantial delays still occur between the time of first expressed concerns, confirmation of diagnosis, and receipt of intervention services. It is well-documented that delays in diagnosis are related to geographic and sociodemographic factors. Fewer studies have examined variables influencing access to services around the time of diagnosis, which is critical for reducing the long-term impact of the condition.

Objectives:   The present study examined disparities in utilization of services around the time of ASD diagnosis on the basis of family income across settings. We investigated the relationship between household income and service use in five regional referral centers across Canada. Data were available through Pathways in ASD, a longitudinal study following preschoolers who received a diagnosis of ASD between ages 2 and 5 years in Halifax, Montreal, Hamilton, Edmonton, and Vancouver.

Methods: Parents completed a demographics survey and provided information about utilization/receipt of services; the latter information was coded using the Pathways Autism Services Log (PASL; Volden et al., in preparation) around the time of diagnosis. Data were available for 339 families. Overall, around the time of diagnosis, 17.5% of families in the national cohort were not receiving any services (either general community or specialized services). Information about demographics and service use was provided again 6 months later. To explore potential disparities in utilization (no services vs. any) on the basis of income, families were classified into three annual household income categories: lower (below $30,000 CAD), middle ($30,000-$80,000 CAD), and higher (above $80,000 CAD).

Results: There was a significant association between service use and income level (Chi-square = 13.8, p = .001, n= 339). Overall, 34.5% of lower income families were not receiving any services around the time of diagnosis vs.16.6% of middle- and 12.0% of higher-income families. We further inspected whether these disparities varied by site, given inter-provincial differences in service funding and delivery models. In three sites (Halifax, Vancouver, Edmonton), almost all families were receiving some service around the time of diagnosis. In the remaining sites, the association between income level and service use was mainly driven by the Montreal site (Chi-square = 12.3, p = 0.002, n= 123), which accounts for approximately a third of the overall national sample. In this site, 71.4% of lower-income families were not receiving any services around the time of diagnosis vs. 37.0% of middle-income and 27.1% of higher-income families. The disparities become narrower but do not completely close in the overall sample 6 months post-diagnosis, with 21.2% of families with lower income still not receiving services relative to 9.6% of middle- and 2.5% of higher income families.

Conclusions: These results highlight disparities in utilization of services around the time of diagnosis of ASD. Disparities appear to decrease over time, but do not disappear. This suggests that lower-income families experience more difficulty identifying, accessing, and/or sustaining services, with some regional differences noted. These findings have significant implications for regional/provincial policy makers and service providers.