Reducing Disparities in Timely Autism Diagnosis through Family Navigation

Large disparities in age of diagnosis of Autism Spectrum Disorder (ASD) exist, with white and more advantaged children being diagnosed on average 5-9 months earlier than minority and low-income children.  Evidence of improved outcomes is greatest when interventions are initiated at the youngest possible age.  We conducted a pilot randomized trial to assess the feasibility of employing patient navigators, referred to as family navigators, to decrease delays in diagnosis among minority and low-income children identified as at-risk for ASD.

Families were randomized into either standard care or family navigation.  Those with family navigation received individualized care to help overcome barriers to completing the diagnostic assessment. Primary outcomes were time to diagnosis, parental stress, and parent satisfaction with diagnostic process. Families were assessed at baseline and three-months after their last clinic visit or two weeks after their final scheduled appointment.

We have randomized 37 out of an expected 40 children-parent dyads.  The two groups were demographically similar; children were 75% male; 65% non-white; and average 2.6 years old; (89%) qualified as low-income.  All intervention families had minimum one visit with a navigator, with an average of 7.5 encounters.  To date, 13 of 15 families (87%) who received navigation, compared to 6 of the 18 families (33%) who received standard care, completed the developmental assessment.  Analysis of the trial is ongoing.

This novel, easily replicated program demonstrates the feasibility and acceptability of patient navigation in the pre-diagnostic setting for low-income and minority families, and suggests possible benefits to decreased time to diagnosis.