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. 2023 Nov-Dec;138(6):971-980.
doi: 10.1177/00333549231163551. Epub 2023 Apr 19.

The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016

Michelle M Hughes  1   2 , Kelly A Shaw  1   2 , Monica DiRienzo  1 , Maureen S Durkin  3 , Amy Esler  4 , Jennifer Hall-Lande  5 , Lisa Wiggins  1 , Walter Zahorodny  6 , Alison Singer  7 , Matthew J Maenner  1
Affiliations

The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016

Michelle M Hughes et al. Public Health Rep. 2023 Nov-Dec.

Abstract

Objectives: Autism spectrum disorder (autism) is a heterogeneous condition that poses challenges in describing the needs of individuals with autism and making prognoses about future outcomes. We applied a newly proposed definition of profound autism to surveillance data to estimate the percentage of children with autism who have profound autism and describe their sociodemographic and clinical characteristics.

Methods: We analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20 135 children aged 8 years with autism during 2000-2016. Children were classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50.

Results: The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non-profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.

Conclusions: As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.

Keywords: autism; public health; surveillance.

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Conflict of interest statement

Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Prevalence of profound and non–profound autism among children aged 8 years, by sex, race and ethnicity, and site, Autism and Developmental Disabilities Monitoring Network, 10 sites, United States, 2016. Error bars indicate 95% CIs. Data source: Autism and Developmental Disabilities Monitoring Network. Abbreviations: AI/AN, American Indian/Alaska Native; API, Asian/Native Hawaiian/Other Pacific Islander; NH, non-Hispanic.
Figure 2.
Figure 2.
Prevalence of profound and non–profound autism among children aged 8 years, by year, Autism and Developmental Disabilities Monitoring Network, 15 sites, United States, 2016. Data from 2012 and 2014 were unavailable and were excluded from analyses. Error bars indicate 95% CIs. Data source: Autism and Developmental Disabilities Monitoring Network.
See this image and copyright information in PMC

Comment in

References

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