A Profile on Emergency Department Visits in Adolescents with Autism Spectrum Disorders

Background:  The prevalence of ASD started to increase dramatically about a decade ago, and now the first wave of these children have approached adolescence and early adulthood. While early diagnosis and intervention have been the focus of scientific and clinical community, the population of adolescents with ASD has not received the same attention. Although various ASD related healthcare services have been designed to better serve this population, it is relatively unknown how well they are being served.

Objectives:  In this study, we use a large, national healthcare claims database to compare the healthcare utilization history (in-/out-patient medical records) of adolescents with and without ASD, with a focus on emergency department (ED) visits.  The goal of this study is to provide an understanding of the physical and mental health well-being of adolescents with ASD.

Methods:  Using the healthcare claims data from MarketScan®, we identified subjects aged 12-21 during each year of 2005-2013.  In each annual cohort, we constructed an ASD cohort of  adolescents with at least two separate diagnoses of ASD (ICD 9 codes 299.0x and 299.8x) through the entire study period (2005-2013) and a non-ASD cohort of those without ASD diagnosis during the study period. We constructed the following annual measures: (a) proportion of adolescents with ASD having ED visit ; (b) proportion of adolescents without ASD having ED visit; (c) proportion of urban adolescents with ASD having ED visit; (d) proportion of rural adolescents with ASD having ED visit; (e) proportion of adolescents having a behavioral ED visit among those non-ASD adolescents with any ED visits; and (f) proportion of adolescents having a behavioral ED visit among those ASD adolescents with any ED visits.

Results:  We observed a consistent increase in the percentage of ASD patients among all adolescents who visited emergency department, from 0.28% in 2005 to 0.85% by 2013. While the percentage of subjects in non-ASD cohort who had ED visits have been fairly stable at around 3%, the percentage in ASD cohort steadily increased from 3.1% in 2005 to 15.8% by 2013. Although rural adolescents with ASD showed a similar pattern in ED visit to those living in urban areas, it took a sharp jump from 14.9% in 2012 to 18.5% in 2013, compared to 16% among urban adolescents with ASD. Among subjects with ED visits, behavioral health service-related ED visits increased from 11.9% in 2005 to 21.6% by 2013 among adolescents with ASD, compared to a more modest increase from 2.6% to 5.9% among adolescents without ASD.

Conclusions:  Our study showed a disconcerting increase in the proportion of adolescents with ASD who had ED visits over the recent decade or so. We also observed a drastic increase in ED visits primarily associated with behavioral health service, suggesting an ASD-related mental health crisis. Finally, adolescent ASD patients living in rural areas experienced a large increase in ED visits, suggesting that this may be a particularly vulnerable population.