Optimizing an intervention to reduce disparities in timely autism diagnosis

Issues:

Intensive services for very young children with ASD have strong evidence of improving child outcomes. Because a formal diagnosis is required to access such services, interventions that improve timely diagnosis are necessary to address existing disparities among low-income and minority children with ASD, who are diagnosed later than their white, more financially advantaged peers.

Project Description:

We describe the development of a family navigation intervention through two pilot randomized controlled trials. Family navigation is a time-limited care management strategy that addresses family-specific barriers to accessing a defined set of services. In these studies, the navigation period began with a failed ASD screen and ended with diagnostic resolution. 

Lessons Learned:

The results of the first pilot study showed that family navigation improved time to diagnosis and was well received by participants. The second pilot study addressed 3 areas identified for improvement: 1) integrating the intervention within the child’s medical home, which has improved communication with the child’s PCP; 2) implementing best practices for ASD screening, which was accomplished by using the MCHAT-Revised with Follow-Up to identify children most at risk for ASD; 3) decreasing the time to diagnostic resolution for all, which was addressed by changing the clinic scheduling procedures and has resulted in a decrease in mean to time to diagnosis from 146 days to 78 days.

Recommendations:

Pilot studies supported optimization of an intervention with scale-up potential. The optimized family navigation intervention is being tested in a multi-site RCT comparing the effectiveness of family navigation to conventional care management.