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Randomized Controlled Trial
. 2021 May;25(4):946-957.
doi: 10.1177/1362361320974175. Epub 2020 Nov 27.

Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial

Carolyn DiGuiseppi  1 , Steven A Rosenberg  1 , Margaret A Tomcho  2 , Kathryn Colborn  1 , Kristina Hightshoe  1 , Silvia Gutiérrez-Raghunath  2 , Jeanette M Cordova  3   4 , Jodi K Dooling-Litfin  5 , Cordelia Robinson Rosenberg  1
Affiliations
Randomized Controlled Trial

Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial

Carolyn DiGuiseppi et al. Autism. 2021 May.

Abstract

Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder's effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test "real-world" implementation of family navigation. We randomly assigned 275 children aged 16-30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families' access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.

Keywords: autism spectrum disorders; diagnosis; early intervention; education services; patient navigation; toddlers; underserved populations.

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Conflict of interest statement

Declaration of Conflicting Interests: None

Figures

Figure 1.
Figure 1.
Procedure for implementation of autism family navigation AFN = Autism Family Navigator; EHR = Electronic Health Records; M-CHAT-R = Modified Checklist for Autism in Toddlers-Revised *Gray shading indicates children who did not receive navigation. All were included in the intention to treat analysis.
Figure 2.
Figure 2.
CONSORT Flow Diagram for SaLSA Trial
See this image and copyright information in PMC

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