The Transition to the Adult Health Care System Among Adolescents with Autism Spectrum Disorder

Background:  The transition from the pediatric to the adult healthcare system is a noted challenge for all individuals, but particularly for those adolescents with special health needs (Stewart, 2009).  A population of adolescents who may experience additional difficulties are those with autism spectrum disorders (ASD) because they are commonly diagnosed with co-occurring developmental, psychiatric, neurological, and other medical conditions (Levy et al., 2010) that may persist into adulthood and require frequent and intensive service and treatments (Liptak, Stuart, & Auinger, 2006). 

These difficulties may be further compounded by the fact that many adolescents with ASD receive everyday services in the school setting (Kang-Yi et al., 2015) and may find themselves exiting both the educational system and the pediatric healthcare system simultaneously.  The current study examines the use of medical services in a national population of privately insured adolescents/young adults (aged 16-22) diagnosed with ASD. 

Objectives:  1) Calculate the percentage of adolescents/young adults with ASD receiving home, office/outpatient hospital, inpatient hospital and emergency department services annually by age; 2) Calculate the annual average number of services received at each place of service.

Methods: Data come from the Optum database, a clinically rich database that includes the health care claims of all individuals insured by Optum’s parent company from May 2000 to June 2013.  The sample includes individuals diagnosed with ASD (n=16,029). 

Estimates were calculated using Stata 13.0 SE.  Cross-sectional multivariate linear regressions were used to determine if an association exists between age and service usage after controlling for child characteristics, household characteristics, and insurance plan structure.

Results: Fewer individuals with ASD received services in an office/outpatient hospital department (p<.01) or inpatient hospital department (p<.01) as they aged, which was accompanied by a reduction in the annual number of visits each year.  There was not a reduction seen in the percentage of individuals with ASD receiving services in either the home or emergency department as they aged.

Females with ASD were more likely to use services in all locations than males, with two-and-a-half visits more per year than males in the outpatient/office setting and two more visits a year in the home.  Black children were less likely to use inpatient, emergency room, and office/outpatient services than white children with two fewer visits per year on average in the office/outpatient setting and one fewer visit to the emergency department.  Children living in households with lower net worth had fewer annual office/outpatient setting visits than children living in households with higher net worth.

Conclusions: As adolescents with ASD age out of the pediatric health care system, there is a notable decline in both the percentage of adolescents that receive services and the number of annual services received across multiple settings. This decline, which potentially co-occurs with a “service cliff” upon graduating from high school (Roux et al., 2015), could lead to unmet service needs.