In The Politics of Autism, I write:
A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).
Question What are the current prevalence and treatment patterns of autism spectrum disorder (ASD) among US children?
Findings According to data from the 2016 National Survey of Children’s Health, among 43 032 US children aged 3 to 17 years, 2.79% were ever diagnosed as having ASD. Among 1115 children with current ASD, 43.3% were treated with behavioral treatment only, 6.9% with medication treatment only, 20.3% with both behavioral and medication treatments, and 29.5% with neither treatment.
Meaning The prevalence of ASD is relatively high in the United States, and about one-third of US children with ASD did not receive behavioral or medication treatment.
Importance Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder. Previous surveys have reported a steady increase in ASD prevalence in US children over the past decades. Several behavioral therapies and medications have been developed to treat the symptoms of ASD; however, little is known about the current status of treatment usage for children diagnosed as having ASD.
Objective To estimate the prevalence and treatment patterns of ASD among US children using nationally representative data.
Design, Setting, and Participants This study used data from the 2016 National Survey of Children’s Health, a nationwide, population-based, cross-sectional survey. We included 43 032 children aged 3 to 17 years. Data were collected through questionnaires completed by a parent or guardian. Data were analyzed from February 2018 to March 2018.
Main Outcomes and Measures Outcome variables included ASD diagnosed by a physician or health professional and the use of behavioral treatment or medication treatment among children with ASD.
Results Of the 43 032 included participants, 22 072 (51.3%) were male, and the mean (SD) age was 10.7 (4.4) years. The weighted prevalence of ever-diagnosed ASD and current ASD were 2.79% (95% CI, 2.46-3.12) and 2.50% (95% CI, 2.21-2.79), respectively. The state-level prevalence of ever-diagnosed ASD varied from 1.54% (95% CI, 0.60-2.48) in Texas to 4.88% (95% CI, 2.72-7.05) in Florida. Nationally, about 70% of children with current ASD (70.5%; 95% CI, 65.1-75.8) were treated; 43.3% (95% CI, 37.4-49.2) received behavioral treatment only, 6.9% (95% CI, 3.7-10.1) received medication treatment only, and 20.3% (95% CI, 16.5-24.1) received both behavioral and medication treatments. The remaining 29.5% (95% CI, 24.2-34.9) of children with current ASD did not receive either behavioral or medication treatment.
Conclusions and Relevance This study showed that the prevalence of ASD in the United States was relatively high, and it varied substantially across US states. Almost 30% of US children with ASD did not receive behavioral or medication treatment, which calls for a critical need to understand and address the barriers for those children to receive appropriate treatments.