Service Providers' Perspectives of Obstacles to ASD-Specialized Services

Background: Children’s early access to ASD-specialized intervention is associated with better long-term outcomes. However, access to ASD-specialized intervention is often impeded by delays in referral and long waitlists for diagnostic confirmation. This study analyzed service providers’ perceptions of obstacles that families face as they navigate three stages of the service delivery system: (1) obtaining a referral for an ASD diagnostic evaluation; (2) obtaining the diagnostic evaluation; and (3) obtaining ASD-specialized intervention.

Objectives: To identify: (1) prominent obstacles to each stage of service delivery; and (2) the extent to which county demographics (i.e., percentage of the population living below the Washington State [WA] poverty line, percentage of the population that is Hispanic, and whether the county is rural or urban) predict obstacles at each stage of service delivery. 

Methods: Service providers (n=128) from 12 demographically diverse WA counties attended one-day workshops on the use of an ASD-specialized intervention. Providers responded to open-ended questions about obstacles that families face at each stage of the service delivery system. Grounded theory was used to identify themes that emerged for each stage. Responses were grouped into system-level obstacles (e.g., limited capacity within the service delivery system) and family-level obstacles (e.g., parental knowledge about ASD) for each stage (Table 1). Six hierarchical linear regressions were conducted to examine the effects of the three county-level predictors on system- and family-level obstacles.

Results: Six identical obstacles emerged for the referral and diagnostic evaluation stages, and 7 obstacles emerged for the intervention stage (Table 1). For the referral stage: (1) system-level obstacles were associated with counties that were rural (β=-.47, p<.01), had larger Hispanic populations (β=.30, p=.03), and had lower levels of poverty (β=-.47, p<.01), R² =.15; and (2) family-level obstacles were associated with urban counties (β=.28, p<.01), R² =.08. For the diagnostic evaluation stage: (1) system-level obstacles were associated with counties that had larger Hispanic populations (β=.19, p=.04), R² =.03; and (2) family-level obstacles were associated with urban counties (β=.33, p<.01), R² =.10. For the intervention stage: (1) system-level obstacles were associated with higher levels of poverty (β=.18, p<.05), R² =.03; and (2) family-level obstacles were associated with urban counties (β=.31, p<.01), R² =.10.

Conclusions: Limited capacity of the service delivery system, as well as family factors such as knowledge about ASD, hesitance to acknowledge a problem, culture, and finances were reported as obstacles for all three stages, suggesting that these areas may be particularly salient for families navigating ASD service delivery systems. At the intervention stage, additional barriers related to complex, difficult-to-navigate systems and family logistical constraints. At all stages, family-level obstacles were generally associated with urban counties, and system-level obstacles were associated with counties with either large Hispanic populations or high levels of poverty. Hispanic ethnicity was associated with system-level challenges at the referral and evaluation stages but not the intervention stage. These findings suggest that multiple contextual factors must be considered when supporting families attempting to navigate service delivery systems for children with possible ASD.