One in 40 Children Have Autism in US, Parent Survey Shows

Troy Brown, RN

November 27, 2018

An estimated 1.5 million children in the United States had autism spectrum disorder (ASD) in 2016, according to a nationally representative survey of parents regarding their children's health and well-being. Boys were more than three times as likely as girls to be diagnosed with the disorder.

Yet many children are undertreated. Parents of children with ASD were 44% more likely to say they had problems obtaining mental health treatment and 46% were more likely to report that they did not receive needed mental health care compared with children who had other emotional, behavioral, or developmental disorders. Parents of children with ASD were twice as likely to say they were usually or always frustrated in obtaining services.

Although children with ASD have more medical and mental health needs, they were 23% less likely to live in a medical home and were 24% less likely to have help with care coordination.

Michael D. Kogan, PhD, from the Health Resources and Services Administration, Maternal and Child Health Bureau, Rockville, Maryland, and colleagues reported their findings online November 26 in Pediatrics.

The researchers analyzed data on 43,283 children aged 3 to 17 years from the 2016 National Survey of Children's Health (NSCH), a nationally representative survey related to the health and well-being of children aged 0 to 17 years.

Parents of one in 40 US children (2.50 per 100 children) reported that their child had ASD; 27% of these children were taking medication for ASD-related symptoms, and 64% had undergone behavioral treatment during the previous year.

This is the fourth time the NSCH has asked about ASD, but the authors caution against comparing surveys from different years, because the methods and survey questions have changed. That said, the prevalence rate of 2.50% is close to that found in the 2016 National Health Interview Survey, at 2.47%.

The authors note that they found less variation in prevalence rates with respect to age, race/ethnicity, and socioeconomic groups than was found in previous surveys. "Policy changes such as the 2007 AAP [American Academy of Pediatrics] recommendations for universal screening by 18 to 24 months may have helped to increase ASD diagnosis among young children, thus reducing the prevalence disparity by age," they write. "These types of recommendations might have also had broader impacts by increasing provider and parent awareness of ASD generally, possibly contributing to increased diagnoses in traditionally underserved racialethnic groups."

Heterogeneity Between States

These numbers tell only part of the story, Sarabeth Broder-Fingert, MD, MPH, from Boston Medical Center and School of Medicine, Massachusetts, and colleagues write in an accompanying editorial. Previous studies have shown a great deal of heterogeneity between the states. For example, between 2000 and 2012, ASD prevalence in Alabama increased at an average annual rate of 12% (relative rate, 1.12); by comparison, in North Carolina, the prevalence increased at an average annual rate of 28% (relative rate, 1.28).

"A single prevalence rate for the entire United States fails to capture this variance," Broder-Fingert and colleagues write. "Therefore, we recommend publishing metrics of heterogeneity alongside national estimates of ASD prevalence," the editorialists explain.

Such an approach would increase awareness of the wide variance in ASD prevalence across the United States and spark careful consideration of its causes, Broder-Fingert and colleagues add.

They hope increased awareness of heterogeneity will advance the conversation about what national prevalence estimates mean, "in particular how they conceal underlying heterogeneity that may reflect important differences in policies, educational and medical practices, and/or causal environmental exposures at the local level," they continue.

The editorialists urge researchers to carefully explore why the prevalence of ASD is rising faster in some states than in others. "This requires attention to local conditions and variations. For example, if the rate at which clinicians offer and parents accept ASD diagnoses is dependent on service availability, local policy, or community factors, then we should expect to find differences in ASD prevalence across states that differ in these ways," they add.

"[G]iven strong evidence of heterogeneity at the state level that may reflect important differences in policies, educational and medical practices, and/or causal environmental exposures, we question the meaning of any national estimate of ASD prevalence. More detailed reporting of heterogeneity in ASD prevalence offers an important first step," the editorialists conclude.

The survey was funded by the National Institutes of Health. The authors and editorialists have disclosed no relevant financial relationships.

Pediatrics. Published online November 26, 2018. Abstract, Editorial

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