ArticlePDF Available

Diagnosed Developmental Disabilities in Children Aged 3-17 Years: United States, 2019-2021

Authors:
Benjamin Zablotsky at Centers for Disease Control and Prevention
Benjamin Zablotsky
Amanda E. Ng at Centers for Disease Control and Prevention
Amanda E. Ng
Lindsey I Black
Lindsey I Black
Lindsey I Black
  • This person is not on ResearchGate, or hasn't claimed this research yet.
Stephen J Blumberg
Stephen J Blumberg
Stephen J Blumberg
  • This person is not on ResearchGate, or hasn't claimed this research yet.
Download full-text PDF
Read full-text
Download citation

Abstract

Developmental disabilities are common in children in the United States, and the prevalence has increased in recent years (1). Timely estimates are necessary to assess the adequacy of services and interventions that children with developmental disabilities typically need (2). This report provides updated prevalence estimates for diagnosed autism spectrum disorder, intellectual disability, and other developmental delay among children aged 3-17 years from the 2019-2021 National Health Interview Survey (NHIS), with differences in prevalence examined between years and by sex, age group, and race and Hispanic origin. Estimates are also presented for any developmental disability, defined as having had one or more of these three diagnoses.
Content uploaded by Amanda E. Ng
Author content
All content in this area was uploaded by Amanda E. Ng on Jul 23, 2024
Content may be subject to copyright.
NCHS Data Brief ■ No. 473 ■ July 2023
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
National Center for Health Statistics
Diagnosed Developmental Disabilities in
Children Aged 3–17 Years: United States, 2019–2021
Benjamin Zablotsky, Ph.D., Amanda E. Ng, M.P.H., Lindsey I. Black, M.P.H., and
Stephen J. Blumberg, Ph.D.
Key findings
Data from the National
Health Interview Survey
●During 2019–2021,
the prevalence of any
diagnosed developmental
disability in children aged
3–17 years increased from
7.40% to 8.56%.
●The prevalence of any
developmental disability was
lowest in non-Hispanic Asian
children compared with other
race and Hispanic-origin groups.
●The prevalence of
intellectual disability increased
with age, while the prevalence
of other developmental delay
decreased with age.
●Boys (4.66%) were more
than three times as likely as
girls (1.50%) to be diagnosed
with autism spectrum disorder.
Developmental disabilities are common in children in the United States,
and the prevalence has increased in recent years (1). Timely estimates are
necessary to assess the adequacy of services and interventions that children
with developmental disabilities typically need (2). This report provides updated
prevalence estimates for diagnosed autism spectrum disorder, intellectual
disability, and other developmental delay among children aged 3–17 years
from the 2019–2021 National Health Interview Survey (NHIS), with
differences in prevalence examined between years and by sex, age group, and
race and Hispanic origin. Estimates are also presented for any developmental
disability, defined as having had one or more of these three diagnoses.
The prevalence of any developmental disability, including
other developmental delay, increased from 2019 to 2021.
NCHS reports can be downloaded from: https://www.cdc.gov/nchs/products/index.htm.
Percent
Figure 1. Prevalence of children aged 3–17 years ever diagnosed with selected developmental
disabilities, by year: United States, 2019–2021
202120202019
1
Linear increase from 2019 to 2021 is significant (p < 0.05).
NOTES: Developmental disability includes autism spectrum disorder, intellectual disability, and any other developmental delay.
As children could be diagnosed with multiple developmental disabilities, “any developmental disability” is not the combined sum of
intellectual disability, autism spectrum disorder, and other developmental delay. Estimates are based on household interviews of a
sample of the U.S. civilian noninstitutionalized population. Access data table for Figure 1 at:
https://www.cdc.gov/nchs/data/
databriefs/db473-tables.pdf#1
.
SOURCE: National Center for Health Statistics, National Health Interview Survey, 2019–2021.
0
2
4
6
8
10
Other
developmental
delay1
Autism spectrum
disorder
Intellectual
disability
Any developmental
disability1
7.40
8.34 8.56
1.70 2.20 1.65
2.79 3.49 3.05
5.08
5.86 6.06
NCHS Data Brief ■ No. 473 ■ July 2023
■  2  ■
●During 2019–2021, the prevalence of any diagnosed developmental disability in children
aged 3–17 years increased from 7.40% in 2019 to 8.56% in 2021 (Figure 1).
●No significant change in the prevalence of diagnosed intellectual disability was observed
during 2019–2021 (1.70% in 2019, 2.20% in 2020, and 1.65% in 2021).
●No significant change in the prevalence of diagnosed autism spectrum disorder was
observed during 2019–2021 (2.79% in 2019, 3.49% in 2020, and 3.05% in 2021).
●The prevalence of diagnosed other developmental delay increased from 5.08% in 2019 to
6.06% in 2021.
The prevalence of any developmental disability varied by sex and race and
Hispanic origin but not age group.
●During 2019–2021, the prevalence of any developmental disability was higher in boys
(10.76%) than girls (5.31%) (Figure 2).
●The prevalence of any developmental disability was similar across age groups: 8.42% in
children aged 3–7, 8.05% in children aged 8–12, and 7.84% in children aged 13–17.
Figure 2. Prevalence of children aged 3–17 years ever diagnosed with any developmental disability, by sex, age, and
race and Hispanic origin: United States, 2019–2021
1
Significantly different from girls (p < 0.05).
2
Significantly different from Asian, non-Hispanic children (p < 0.05).
3
Children of Hispanic origin may be of any race.
NOTES: Developmental disability includes autism spectrum disorder, intellectual disability, and any other developmental delay. Estimates are based on household
interviews of a sample of the U.S. civilian noninstitutionalized population. Access data table for Figure 2 at:
https://www.cdc.gov/nchs/data/databriefs/
db473-tables.pdf#2
.
SOURCE: National Center for Health Statistics, National Health Interview Survey, 2019–2021.
Percent
0 2 4 6 8 10 12
Hispanic3
White, non-Hispanic
Black, non-Hispanic
Asian, non-Hispanic
13–17
8–12
3–7
Girls
Boys
Total
27.40
28.42
29.07
4.85
7.84
8.05
8.42
5.31
110.76
8.10
NCHS Data Brief ■ No. 473 ■ July 2023
■  3  ■
●Non-Hispanic Asian children (subsequently, Asian) (4.85%) were less likely to have any
developmental disability compared with Hispanic (7.40%), non-Hispanic Black (subsequently,
Black) (9.07%), and non-Hispanic White (subsequently, White) (8.42%) children.
●The observed differences in the prevalence of any developmental disability between
Hispanic and Black children and Hispanic and White children were not significant.
The prevalence of intellectual disability varied by sex, age group, and race
and Hispanic origin.
●During 2019–2021, the prevalence of diagnosed intellectual disability was higher in boys
(2.31%) than girls (1.37%) (Figure 3).
●The prevalence of intellectual disability increased with age, from 1.39% for children aged
3–7 years to 2.35% for children aged 13–17 years.
●Black children (2.82%) were more likely to be diagnosed with an intellectual disability than
Hispanic (1.77%), White (1.76%), and Asian (0.72%) children.
●Compared with other race and Hispanic-origin groups, Asian children were the least likely
to be diagnosed with an intellectual disability.
Figure 3. Prevalence of children aged 3–17 years ever diagnosed with intellectual disability, by sex, age, and
race and Hispanic origin: United States, 2019–2021
1
Significantly different from girls (p < 0.05).
2
Significant linear trend by age group (p < 0.05).
3
Significantly different from Asian, non-Hispanic children (p < 0.05).
4
Significantly different from Black, non-Hispanic children (p < 0.05).
5
Children of Hispanic origin may be of any race.
NOTES: Estimates are based on household interviews of a sample of the U.S. civilian noninstitutionalized population. Access data table for Figure 3 at:
https://www.cdc.gov/nchs/data/databriefs/db473-tables.pdf#3
.
SOURCE: National Center for Health Statistics, National Health Interview Survey, 2019–2021.
Percent
Hispanic
5
White, non-Hispanic
Black, non-Hispanic
Asian, non-Hispanic
13–17
8–12
3–7
Girls
Boys
Total
3,4
1.77
3,4
1.76
3
2.82
0.72
1.79
2.35
2
1.39
1.37
1
2.31
1.85
0123
NCHS Data Brief ■ No. 473 ■ July 2023
■  4  ■
The prevalence of autism spectrum disorder varied by sex and age group.
●During 2019–2021, the prevalence of autism spectrum disorder was higher in boys (4.66%)
than girls (1.50%) (Figure 4).
●Children aged 3–7 years (2.62%) were less likely to have been diagnosed with autism
spectrum disorder than children aged 8–12 years (3.36%) and 13–17 years (3.35%).
●While the prevalence of autism spectrum disorder was highest in Black children (3.56%), a
significant difference was not observed between any of the race and Hispanic-origin groups.
Figure 4. Prevalence of children aged 3–17 years ever diagnosed with autism spectrum disorder, by sex, age, and
race and Hispanic origin: United States, 2019–2021
1
Significantly different from girls (p < 0.05).
2
Significant linear trend by age group (p < 0.05).
3
Children of Hispanic origin may be of any race.
NOTES: Estimates are based on household interviews of a sample of the U.S. civilian noninstitutionalized population. Access data table for Figure 4 at:
https://www.cdc.gov/nchs/data/databriefs/db473-tables.pdf#4
.
SOURCE: National Center for Health Statistics, National Health Interview Survey, 2019–2021.
Percent
Hispanic3
White, non-Hispanic
Black, non-Hispanic
Asian, non-Hispanic
13–17
8–12
3–7
Girls
Boys
Total
2.96
3.06
3.56
2.87
3.35
3.36
22.62
1.50
14.66
3.11
012345
NCHS Data Brief ■ No. 473 ■ July 2023
■  5  ■
The prevalence of developmental delay other than autism spectrum
disorder or intellectual disability varied by sex, age group, and race and
Hispanic origin.
●During 2019–2021, the prevalence of any other developmental delay was higher in boys
(7.31%) than girls (3.94%) (Figure 5).
●The prevalence of any other developmental delay decreased with age, from 6.58% for
children aged 3–7 years to 4.89% for children aged 13–17 years.
●Asian children (2.53%) were less likely to have any other developmental delay compared
with Hispanic (5.13%), Black (6.43%), and White (6.00%) children.
●The observed differences in the prevalence of any other developmental delay between
Hispanic and Black children and Hispanic and White children were not significant.
Figure 5. Prevalence of children aged 3–17 years ever diagnosed with other developmental delay, by sex, age, and
race and Hispanic origin: United States, 2019–2021
1
Significantly different from girls (p < 0.05).
2
Significant linear trend by age group (p < 0.05).
3
Significantly different from Asian, non-Hispanic children (p < 0.05).
4
Children of Hispanic origin may be of any race.
NOTES: Estimates are based on household interviews of a sample of the U.S. civilian noninstitutionalized population. Access data table for Figure 5 at:
https://www.cdc.gov/nchs/data/databriefs/db473-tables.pdf#5
.
SOURCE: National Center for Health Statistics, National Health Interview Survey, 2019–2021.
02468
Percent
Hispanic4
White, non-Hispanic
Black, non-Hispanic
Asian, non-Hispanic
13–17
8–12
3–7
Girls
Boys
Total
35.13
36.00
36.43
2.53
4.89
5.56
26.58
3.94
17.31
5.67
NCHS Data Brief ■ No. 473 ■ July 2023
■  6  ■
Summary
During 2019–2021, a significant increase in the prevalence of any diagnosed developmental
disability was observed. However, no significant change in the prevalence of diagnosed autism
spectrum disorder or intellectual disability was observed over the same period. The increase in
the prevalence of any developmental disability was largely the result of the significant increase in
prevalence of any other developmental delay.
Estimates presented in this report are the first on developmental disabilities from NHIS since
the survey was redesigned in 2019. While the prevalence reported in this report was higher for
each selected condition than in a previous report from NHIS (3) with estimates from 2014–2016,
these estimates may not be comparable with pre-redesign estimates. Boys were more likely to
be diagnosed with a developmental disability than girls, younger children were less likely to be
diagnosed with intellectual disability, and older children were less likely to be diagnosed with a
developmental delay. This report did not find Black and Hispanic children to be more likely to be
diagnosed with autism spectrum disorder compared with White children, unlike recent reports (4).
Definitions
Diagnosed developmental disabilities: Children were considered to have a developmental
disability if they were diagnosed with one or more of the three selected developmental
disabilities:
●Autism spectrum disorder: Based on a “yes” response to the survey question, “Has a
doctor or other health professional ever told you that [sample child] had autism, Asperger’s
disorder, pervasive developmental disorder, or autism spectrum disorder?” Children
diagnosed with autism spectrum disorder could also be diagnosed with intellectual
disability.
●Intellectual disability: Based on a “yes” response to the survey question, “Has a doctor or
other health professional ever told you that [sample child] had an intellectual disability, also
known as mental retardation?” Children diagnosed with intellectual disability could also be
diagnosed with autism spectrum disorder.
●Other developmental delay: Based on a “yes” response to the survey question, “Has
a doctor or other health professional ever told you that [sample child] had any other
developmental delay?” Parents who affirmed that their child had autism spectrum disorder
or intellectual disability were asked to exclude those conditions when asked about any other
developmental delay. Children who were diagnosed with either or both autism spectrum
disorder and intellectual disability and had a “yes” response to this survey question were
considered to have been diagnosed with both or all three conditions.
Race and Hispanic origin: Categories shown for non-Hispanic children are for those who selected
only one racial group; respondents had the option to select more than one racial group. Children
categorized as Hispanic may be of any race or combination of races. Estimates for non-Hispanic
children of races other than White only, Black only, or Asian only are not shown but are included
in total estimates. Analyses were limited to the race and Hispanic-origin groups for which data
NCHS Data Brief ■ No. 473 ■ July 2023
■  7  ■
were reliable and sufficiently powered for group comparisons based on National Center for
Health Statistics presentation standards (5).
Data source and methods
Data from the 2019–2021 NHIS were used for this analysis. NHIS is a nationally representative
household survey of the U.S. civilian noninstitutionalized population. It is conducted
continuously throughout the year by the National Center for Health Statistics. Interviews are
typically conducted in respondents’ homes, but follow-ups to complete interviews may be
conducted over the telephone. Because of the COVID-19 pandemic, interviewing procedures
were disrupted, and 68.0% of 2020 and 61.4% of 2021 Sample Child interviews were conducted
at least partially by telephone (6,7). In 2019, 31.7% of Sample Child interviews were conducted
at least partially by telephone (8). For more information about NHIS, visit https://www.cdc.gov/
nchs/nhis.htm. The NHIS questionnaire was redesigned in 2019, which may impact the ability
to compare estimates from this report with previous years. For more information on the NHIS
redesign, visit https://www.cdc.gov/nchs/nhis/2019_quest_redesign.htm.
Point estimates and the corresponding confidence intervals were calculated using SAS-callable
SUDAAN software (9). All estimates are based on parent or guardian report and meet National
Center for Health Statistics data presentation standards for proportions (5). Estimates are presented
at two decimal places to allow comparability with reports from the Autism and Developmental
Disabilities Monitoring Network (4) and previous National Center for Health Statistics reports
(3). Differences between percentages were evaluated using two-sided significance tests at the 0.05
level via logistic regression. Linear and quadratic trends by age group were evaluated using
two-sided significance tests at the 0.05 level.
About the authors
Benjamin Zablotsky, Amanda E. Ng, Lindsey I. Black, and Stephen J. Blumberg are with the
National Center for Health Statistics, Division of Health Interview Statistics.
References
1. Zablotsky B, Black LI, Maenner MJ, Schieve LA, Danielson ML, Bitsko RH, et al.
Prevalence and trends of developmental disabilities among children in the United States:
2009–2017. Pediatrics 144(4):e20190811. 2019.
2. Cogswell ME, Coil E, Tian LH, Tinker SC, Ryerson AB, Maenner MJ, et al. Health needs
and use of services among children with developmental disabilities—United States, 2014–2018.
MMWR Morb Mortal Wkly Rep 71(12):453–8. 2022.
3. Zablotsky B, Black LI, Blumberg SJ. Estimated prevalence of children with diagnosed
developmental disabilities in the United States, 2014–2016. NCHS Data Brief, no 291.
Hyattsville, MD: National Center for Health Statistics. 2017.
4. Maenner MJ, Warren Z, Williams AR, Amoakohene E, Bakian AV, Bilder DA, et al.
Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism
and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020. MMWR
Surveill Summ 72(2):1–14. 2023.
NCHS Data Brief ■ No. 473 ■ July 2023
5. Parker JD, Talih M, Malec DJ, Beresovsky V, Carroll M, Gonzalez JF
Jr, et al. National Center for Health Statistics data presentation standards for
proportions. National Center for Health Statistics. Vital Health Stat 2(175).
2017.
6. National Center for Health Statistics. National Health Interview Survey,
2020 survey description. 2021. Available from: https://ftp.cdc.gov/pub/
Health_Statistics/NCHS/Dataset_Documentation/NHIS/2020/srvydesc-508.pdf.
7. National Center for Health Statistics. National Health Interview Survey,
2021 survey description. 2022. Available from: https://ftp.cdc.gov/pub/
Health_Statistics/NCHS/Dataset_Documentation/NHIS/2021/srvydesc-508.pdf.
8. National Center for Health Statistics. National Health Interview Survey,
2019 survey description. 2020. Available from: https://ftp.cdc.gov/pub/
Health_Statistics/NCHS/Dataset_Documentation/NHIS/2019/srvydesc-508.pdf.
9. RTI International. SUDAAN (Release 11.0.3) [computer software]. 2018.
Keywords: autism spectrum disorder • intellectual disability • other
developmental delay • developmental disability • National Health Interview
Survey (NHIS)
Suggested citation
Zablotsky B, Ng AE, Black LI, Blumberg SJ.
Diagnosed developmental disabilities in children
aged 3–17 years: United States, 2019–2021.
NCHS Data Brief, no 473. Hyattsville, MD:
National Center for Health Statistics. 2023. DOI:
https://dx.doi.org/10.15620/cdc:129520.
Copyright information
All material appearing in this report is in the
public domain and may be reproduced or copied
without permission; citation as to source,
however, is appreciated.
National Center for Health
Statistics
Brian C. Moyer, Ph.D., Director
Amy M. Branum, Ph.D., Associate Director for
Science
Division of Health Interview Statistics
Stephen J. Blumberg, Ph.D., Director
Anjel Vahratian, Ph.D., M.P.H., Associate
Director for Science
For e-mail updates on NCHS publication
releases, subscribe online at:
https://www.cdc.gov/nchs/email-updates.htm.
For questions or general information
about NCHS:
Tel: 1–800–CDC–INFO (1–800–232–4636)
TTY: 1–888–232–6348
Internet: https://www.cdc.gov/nchs
Online request form: https://www.cdc.gov/info
ISSN 1941–4927 Print ed.
ISSN 1941–4935 Online ed.
CS340957
U.S. DEPARTMENT OF
HEALTH & HUMAN SERVICES
Centers for Disease Control and Prevention
National Center for Health Statistics
3311 Toledo Road, Room 4551, MS P08
Hyattsville, MD 20782–2064
OFFICIAL BUSINESS
PENALTY FOR PRIVATE USE, $300
For more NCHS Data Briefs, visit:
https://www.cdc.gov/nchs/products/databriefs.htm.
FIRST CLASS MAIL
POSTAGE & FEES PAID
CDC/NCHS
PERMIT NO. G-284
... As of 2021, 8.56% of children in the U.S. have a neurodevelopmental disorder (NDD), including autism spectrum disorder (ASD), intellectual disability (ID), and attentiondeficit/hyperactivity disorder (ADHD). 1,2 Recognizing factors that predispose individuals to NDDs and enhancing early detection can lead to interventions that reduce the severity of NDD symptoms and improve the quality of life for neurodivergent individuals and their families. 3 Furthermore, timely interventions can help prevent the progression of these conditions into other severe mental or medical complications in adulthood. ...
Association of Parental Prenatal Mental Health on Offspring Neurodevelopmental Disorders: A Systematic Review and Meta-Analysis
Preprint
Full-text available
  • Sep 2024
Objective: Parental prenatal mood and anxiety disorders (PMAD) are linked to child neurodevelopmental disorders (NDDs), but evaluations of the magnitude and mechanisms of this association are limited. This study estimates the strength of the association and whether it is impacted by genetic and environmental factors. Method: A systematic search of PubMed, CENTRAL, PsycINFO, OVID, and Google Scholar was performed for articles published from January 1988 to January 2024. Of 2,170 articles screened, 64 met the inclusion criteria. Meta-analyses were conducted on 20 studies, and 44 were included in the narrative synthesis. We conducted random-effects meta-analyses, along with tests for heterogeneity (I^2) and publication bias (Egger's test). The review followed PRISMA and MOOSE guidelines. Results: Maternal PMADs were associated with a significantly increased risk of ADHD (OR 1.91, 95% CI 1.45-2.52) and ASD (OR 1.57, 95% CI 1.37-1.81) in children. Paternal PMADs were also associated with the risk of NDDs, with combined odds for ASD and ADHD (OR 1.24, 95% CI 1.15-1.34). Several studies suggested that the link between parental PMADs and offspring NDDs might be impacted by both genetic and environmental factors, including the impact of ongoing parental depression on child behavior. Conclusions and Relevance: Parental PMADs are significantly associated with an increased risk of NDDs in children. These associations may be influenced by both genetic predispositions and environmental factors. Understanding these pathways is important for informing interventions aimed at mitigating mental health risks in families and supporting child development.
View
View
Tech-Based-Cueing for Career Development for Learners with Developmental Disabilities: A Literature Review and Usability Evaluation
Presentation
Full-text available
  • Nov 2024
This presentation delves into technology-based cueing (TBC) systems designed to enhance the career development of learners with developmental disabilities (DD), particularly those with autism and intellectual disabilities. Adults with DD often face significant challenges in the workplace, such as difficulties with job interviews, navigating social interactions, remembering task steps, and adapting to changing job requirements. These barriers highlight the need for innovative tools to support their employment success. TBC systems leverage smartphones, tablets, and handheld PCs to deliver text, picture, or audio cues, enabling users to navigate tasks independently and improve self-direction. By accommodating diverse executive functioning and cognitive skills, these systems offer tailored support for individuals with DD, fostering greater autonomy in workplace settings. This presentation also outlines a comprehensive literature review conducted using the PRISMA method, aimed at identifying studies focused on TBC systems for career skills development. Four studies met the eligibility criteria, which required participants with DD, the use of handheld devices, picture/text/audio cueing systems, independent device usage, and a focus on career or vocational tasks. The analysis of these studies underscores critical design considerations for TBC systems, including social, technical, and pedagogical factors that influence their effectiveness. In conclusion, the presentation proposes future research directions to broaden the scope and impact of TBC systems. Recommendations include exploring broader applications, creating individualized systems tailored to user needs, supporting executive functioning through advanced designs, incorporating the STP (situation-task-performance) framework, enhancing social interaction support, and expanding research to address the diverse employment needs of individuals with DD. These efforts aim to bridge the gap between technological innovation and meaningful career opportunities for this population.
View
View
Reflections on AI-Augmented Professional Development in Special Education: Promises and Pitfalls
Chapter
  • Sep 2024
Artificial intelligence (AI) has the potential to radically change a wide range of disciplines, including special education. Given the chronic issues with recruitment and retention of personnel involved in services for people with disabilities, automating professional development and training represents a promising application of AI. However, powerful technologies such as AI often produce adverse or unintended consequences. This chapter discusses the ethical implications of a line of research involving the integration of AI into immersive virtual reality (VR)— ‘smart' VR—designed to teach practitioners a research-based behavior intervention for children with intellectual and developmental disabilities. Specific sections describe the impetus and potential advantages of smart VR, delineate the development and evaluation of the training, and identify concerns related to the use of similar applications in special education.
View
Pediatric Neurology
Chapter
  • Oct 2024
Pediatric neurology involves evaluation and treatment of disorders of the central and peripheral nervous systems in infants, children, and adolescents. There are health disparities in many neurologic disorders of childhood (including both common and rare disorders), leading to inequities in access to care, diagnosis, therapies, and health outcomes for children across multiple sociodemographic factors. Such disparities have been identified for children in terms of race, ethnicity, insurance type, gender, primary language, and socioeconomic status. In this chapter, we describe the evidence for the existence of health disparities in several neurologic diseases that can occur in childhood, including epilepsy, migraine, tic disorders, stroke, leukodystrophies, cerebral palsy, developmental delay, and autism spectrum disorder. We conclude by discussing the largely understudied area of interventions in pediatric neurology that are intended to address these disparities in care and what investigators planning interventions in pediatric neurology may be able to learn from prior efforts in adult neurology and implementation science.
View
Early Cues from Parent–Child Interaction: Comparisons Among Young Children Diagnosed with Autism Spectrum Disorder and Developmental Language Disorder and Children not Diagnosed with a Disability
Article
Full-text available
  • Oct 2024
  • J AUTISM DEV DISORD
Over the past ten years, there has been a significant improvement in the sensibility and specificity of the earlier diagnosis of ASD. However, parenting traits were relatively explored among children with different disabilities. We aimed to clarify the characteristics of parent–child interaction among children with ASD and DLD, compared with children not diagnosed with a disability. The study recruited 280 children aged 1.5−3.9 years (30 children with ASD, 48 children with DLD, and 202 TD children) and their primary caregivers. Parent–child interaction was measured based on video recordings and observation. One-way ANOVA was used for the comparison of IRS-C scores among the three groups, and the t-test was used for pairwise comparisons; effect size was also calculated. Children’s age and sex were further considered as grouping category in our analyses. All comparison models were adjusted by demographic background (i.e. child age and sex, sibling, main caregiver, mother education, and family annual income). Children with ASD showed the lowest level of general social competence compared to children with DLD (d = 1.298, P < 0.001) and TD group (d = 1.833, P < 0.001). Children with DLD showed less responsiveness (d = 0.780, P < 0.001) and less empathy (d = 0.706, P < 0.001) than TD children. Caregivers of children with ASD also showed the lowest level of parenting attributes relative to caregivers of children with DLD (d = 0.978, P < 0.001) and caregivers of TD children (d = 0.860, P < 0.001). The child- and parent-related traits also varied by child age and sex. We posit that parent–child interaction necessitates greater attention with respect to early screening and identification.
View
Current Issues in Intellectual and Developmental Disabilities: Families, Self-Advocates, and Intersectionality
Chapter
  • Sep 2024
In this chapter, the authors discuss three interrelated issues related to individuals with intellectual and developmental disabilities (IDD). The authors begin with the issue of family caregiving, including conceptual frameworks for understanding caregiving in IDD and caregivers’ experiences across the life course of the individual with IDD. The next issue discussed is that of self-advocacy among individuals with IDD including a discussion of the history and current roles of the self-advocacy movement among individuals with IDD and autism. Finally, the authors discuss the issue of intersectional identities of individuals with IDD, particularly on the topics of race and ethnicity, gender, sexual orientation and gender identity, and immigrants and refugees with IDD. It is important to highlight these issues related to those with lived experience for people who support individuals with IDD and their families to understand their effects on the quality of life of individuals with IDD. In conclusion, the case is made for individuals with IDD, family members, and service providers (including teachers, social workers, physicians, nurses, therapists, and policymakers) to strive to address the differentiating needs of individuals with IDD and their families, and tailor their services and policies accordingly.
View
Vocational rehabilitation service usage and outcomes for transition-age youth with serious mental health conditions
Article
  • Aug 2024
BACKGROUND: The postsecondary vocational outcomes of students with mental health disabilities (MHD) are poor and vocational rehabilitation factors contributing to better outcomes have not been identified. OBJECTIVE: Characterize demographic, service use and service outcome differences between youth with MHD and youth with other disabilities from state vocational rehabilitation agencies (SVRA) and identify factors predicting service use and service outcomes within youth with MHD. METHODS: Data were from 2015–2017 Rehabilitation Services Administration-911 case closure files. The sample consisted of 14–24-year-old SVRA applicants. Cross-disability characteristics, service use and outcomes were compared. Within youth with MHD, multivariate analyses examined factors contributing to having an Individual Plan for Employment (IPE) and successful case closure (i.e., with employment). RESULTS: Youth with MHD were underrepresented, older at application and were less likely to have IPEs and successful closures than youth in other disability groups. Within youth with MHD, application age and SVRA characteristics were the strongest predictors of having an IPE. Education and employment status at application strongly predicted successful closure. CONCLUSION: Youth with MHD, as in previous cohorts, continue to have lower service use and successful SVRA outcomes. Efforts are needed to increase their connection to SVRAs at younger ages. Youth with MHD without employment at application may need additional supports to achieve successful closures. Addressing several SVRA performance characteristics may improve their service use and outcomes.
View
Perinatal and Postpartum Health Among People With Intellectual and Developmental Disabilities
Article
  • Aug 2024
Importance Small, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States–based population-level data among people with IDD are lacking. Objectives To identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD. Design, Setting, and Participants This retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024. Exposure People who had a documented birth in Medicaid during the study years. Main Outcome and Measures Perinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression. Results The study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD. Conclusions and Relevance In this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.
View
Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020
Article
Full-text available
  • Mar 2023
Problem/condition: Autism spectrum disorder (ASD). Period covered: 2020. Description of system: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years. In 2020, there were 11 ADDM Network sites across the United States (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). To ascertain ASD among children aged 8 years, ADDM Network staff review and abstract developmental evaluations and records from community medical and educational service providers. A child met the case definition if their record documented 1) an ASD diagnostic statement in an evaluation, 2) a classification of ASD in special education, or 3) an ASD International Classification of Diseases (ICD) code. Results: For 2020, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 23.1 in Maryland to 44.9 in California. The overall ASD prevalence was 27.6 per 1,000 (one in 36) children aged 8 years and was 3.8 times as prevalent among boys as among girls (43.0 versus 11.4). Overall, ASD prevalence was lower among non-Hispanic White children (24.3) and children of two or more races (22.9) than among non-Hispanic Black or African American (Black), Hispanic, and non-Hispanic Asian or Pacific Islander (A/PI) children (29.3, 31.6, and 33.4 respectively). ASD prevalence among non-Hispanic American Indian or Alaska Native (AI/AN) children (26.5) was similar to that of other racial and ethnic groups. ASD prevalence was associated with lower household income at three sites, with no association at the other sites.Across sites, the ASD prevalence per 1,000 children aged 8 years based exclusively on documented ASD diagnostic statements was 20.6 (range = 17.1 in Wisconsin to 35.4 in California). Of the 6,245 children who met the ASD case definition, 74.7% had a documented diagnostic statement of ASD, 65.2% had a documented ASD special education classification, 71.6% had a documented ASD ICD code, and 37.4% had all three types of ASD indicators. The median age of earliest known ASD diagnosis was 49 months and ranged from 36 months in California to 59 months in Minnesota.Among the 4,165 (66.7%) children with ASD with information on cognitive ability, 37.9% were classified as having an intellectual disability. Intellectual disability was present among 50.8% of Black, 41.5% of A/PI, 37.8% of two or more races, 34.9% of Hispanic, 34.8% of AI/AN, and 31.8% of White children with ASD. Overall, children with intellectual disability had earlier median ages of ASD diagnosis (43 months) than those without intellectual disability (53 months). Interpretation: For 2020, one in 36 children aged 8 years (approximately 4% of boys and 1% of girls) was estimated to have ASD. These estimates are higher than previous ADDM Network estimates during 2000-2018. For the first time among children aged 8 years, the prevalence of ASD was lower among White children than among other racial and ethnic groups, reversing the direction of racial and ethnic differences in ASD prevalence observed in the past. Black children with ASD were still more likely than White children with ASD to have a co-occurring intellectual disability. Public health action: The continued increase among children identified with ASD, particularly among non-White children and girls, highlights the need for enhanced infrastructure to provide equitable diagnostic, treatment, and support services for all children with ASD. Similar to previous reporting periods, findings varied considerably across network sites, indicating the need for additional research to understand the nature of such differences and potentially apply successful identification strategies across states.
View
Health Needs and Use of Services Among Children with Developmental Disabilities - United States, 2014-2018
Article
Full-text available
  • Mar 2022
Developmental delays, disorders, or disabilities (DDs) manifest in infancy and childhood and can limit a person's function throughout life* (1-3). To guide strategies to optimize health for U.S. children with DDs, CDC analyzed data from 44,299 participants in the 2014-2018 National Health Interview Survey (NHIS). Parents reported on 10 DDs,† functional abilities, health needs, and use of services. Among the approximately one in six (17.3%) U.S. children and adolescents aged 3-17 years (hereafter children) with one or more DDs, 5.7% had limited ability to move or play, 4.7% needed help with personal care, 4.6% needed special equipment, and 2.4% received home health care, compared with ≤1% for each of these measures among children without DDs. Children with DDs were two to seven times as likely as those without DDs to have taken prescription medication for ≥3 months (41.6% versus 8.4%), seen a mental health professional (30.6% versus 4.5%), a medical specialist (26.0% versus 12.4%), or a special therapist, such as a physical, occupational, or speech therapist, (25.0% versus 4.5%) during the past year, and 18 times as likely to have received special education or early intervention services (EIS) (41.9% versus 2.4%). These percentages varied by type of disability and by sociodemographic subgroup. DDs are common, and children with DDs often need substantial health care and services. Policies and programs that promote early identification of children with developmental delays and facilitate increased access to intervention services can improve health and reduce the need for services later in life.§ Sociodemographic inequities merit further investigation to guide public health action and ensure early and equitable access to needed care and services.
View
Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009–2017
Article
  • Sep 2019
Objectives: To study the national prevalence of 10 developmental disabilities in US children aged 3 to 17 years and explore changes over time by associated demographic and socioeconomic characteristics, using the National Health Interview Survey. Methods: Data come from the 2009 to 2017 National Health Interview Survey, a nationally representative survey of the civilian noninstitutionalized population. Parents reported physician or other health care professional diagnoses of attention-deficit/hyperactivity disorder; autism spectrum disorder; blindness; cerebral palsy; moderate to profound hearing loss; learning disability; intellectual disability; seizures; stuttering or stammering; and other developmental delays. Weighted percentages for each of the selected developmental disabilities and any developmental disability were calculated and stratified by demographic and socioeconomic characteristics. Results: From 2009 to 2011 and 2015 to 2017, there were overall significant increases in the prevalence of any developmental disability (16.2%-17.8%, P < .001), attention-deficit/hyperactivity disorder (8.5%-9.5%, P < .01), autism spectrum disorder (1.1%-2.5%, P < .001), and intellectual disability (0.9%-1.2%, P < .05), but a significant decrease for any other developmental delay (4.7%-4.1%, P < .05). The prevalence of any developmental disability increased among boys, older children, non-Hispanic white and Hispanic children, children with private insurance only, children with birth weight ≥2500 g, and children living in urban areas and with less-educated mothers. Conclusions: The prevalence of developmental disability among US children aged 3 to 17 years increased between 2009 and 2017. Changes by demographic and socioeconomic subgroups may be related to improvements in awareness and access to health care.
View
Estimated Prevalence of Children With Diagnosed Developmental Disabilities in the United States, 2014-2016
Article
  • Nov 2017
Developmental disabilities are a set of heterogeneous disorders characterized by difficulties in one or more domains, including but not limited to, learning, behavior, and self-care. This report provides the latest prevalence estimates for diagnosed autism spectrum disorder, intellectual disability, and other developmental delay among children aged 3–17 years from the 2014–2016 National Health Interview Survey (NHIS). Estimates are also presented for any developmental disability, defined as having had one or more of these three diagnoses. Prevalence estimates are based on parent or guardian report of ever receiving a diagnosis of each developmental disability from a doctor or other health care professional.
View
National Center for Health Statistics data presentation standards for proportions. National Center for Health Statistics
  • J D Parker
  • M Talih
  • D J Malec
  • V Beresovsky
  • M Carroll
  • J F Gonzalez
  • Jr
Parker JD, Talih M, Malec DJ, Beresovsky V, Carroll M, Gonzalez JF Jr, et al. National Center for Health Statistics data presentation standards for proportions. National Center for Health Statistics. Vital Health Stat 2(175).