Research

JAMA Psychiatry | Original Investigation

Neurodevelopmental Disorders Among Publicly or Privately Insured Children

in the United States
Loreen Straub, MD, MS; Brian T. Bateman, MD, MS; Sonia Hernandez-Diaz, MD, DrPH; Cassandra York, BS;
Barry Lester, PhD; Katherine L. Wisner, MD, MS; Christopher J. McDougle, MD; Page B. Pennell, MD;
Kathryn J. Gray, MD, PhD; Yanmin Zhu, MS, PhD; Elizabeth A. Suarez, MS, PhD;
Helen Mogun, MS; Krista F. Huybrechts, MS, PhD

Supplemental content
IMPORTANCE Neurodevelopmental disorders are associated with poor health and social
outcomes. Population-based data on incidence, age at diagnosis, and demographic variations
are essential to identify modifiable risk factors and inform the planning of services and
interventions.
OBJECTIVES To assess the incidence and timing of diagnosis of neurodevelopmental disorders
during childhood in the US and to evaluate differences by population characteristics.

DESIGN, SETTING, AND PARTICIPANTS This population-based cohort study used nationwide
data on birth cohorts nested in the 2000-2014 Medicaid Analytic eXtract and the 2003-2015
IBM MarketScan Research Database on 2 070 541 publicly and 1 309 900 privately insured
children enrolled at birth. Data were analyzed between May 1, 2020, and June 30, 2021.

MAIN OUTCOMES AND MEASURES Neurodevelopmental disorders, autism spectrum disorders,

attention-deficit/hyperactivity disorder, learning disabilities, speech or language disorders,
developmental coordination disorders, intellectual disabilities, and behavioral disorders were
identified based on validated algorithms. Kaplan-Meier analyses were used to estimate the
incidence and timing of diagnosis, stratified by child’s sex, birth year, maternal age at delivery,
and race and ethnicity.

RESULTS The cohorts comprised 2 070 541 publicly insured children (1 045 426 boys [50.5%])
and 1 309 900 privately insured children (667 607 boys [51.0%]) enrolled at birth. By 8 years
of age, 23.9% of publicly insured children and 11.0% of privately insured children received
a diagnosis of 1 or more neurodevelopmental disorders (autism spectrum disorder, 1.6% and
1.3%; attention-deficit/hyperactivity disorder, 14.5% and 5.8%; learning disability, 1.2% and
0.6%; speech or language disorder, 8.4% and 4.5%; developmental coordination disorder,
0.9% and 0.7%; intellectual disability, 0.7% and 0.1%; and behavioral disorder, 8.4% and
1.5%). Risks were substantially higher among boys (incidence of ⱖ1 neurodevelopmental
disorder by age 8 years for boys vs girls: 30.7% vs 16.7% among publicly insured children and
15.0% vs 6.7% among privately insured children) and White children (30.2% vs 9.1% among
Asian children, 23.0% among Black children, 15.4% among Hispanic children, and 22.7%
among children of unknown race or ethnicity; information on race and ethnicity was available
only for publicly insured children). The association of maternal age and birth year with
incidence of neurodevelopmental disorders varied by outcome. Except for attention-deficit/
hyperactivity disorder, the diagnosis tended to be established somewhat earlier for privately
insured children. The association of race and ethnicity with age at diagnosis varied by
outcome. Co-occurring neurodevelopmental disorders were common, especially among
children with autism spectrum disorder and intellectual disability (>70% had ⱖ1 other
disorder).

CONCLUSIONS AND RELEVANCE In this population-based cohort study, a relatively high

incidence of and co-occurrence of neurodevelopmental disorders as well as the disparity in Author Affiliations: Author
affiliations are listed at the end of this
incidence and timing of diagnosis by insurance type and race and ethnicity were found. These article.
findings represent important public health concerns and underscore the need for timely and Corresponding Author: Loreen
accessible developmental assessments and educational services to help reduce the burden Straub, MD, MS, Division of
of these disorders. Pharmacoepidemiology and
Pharmacoeconomics, Department of
Medicine, Brigham and Women’s
Hospital, 1620 Tremont St, Ste 3030,
JAMA Psychiatry. 2022;79(3):232-242. doi:10.1001/jamapsychiatry.2021.3815 Boston, MA 02120 (lstraub@bwh.
Published online January 5, 2022. harvard.edu).

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 Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US
N
eurodevelopmental disorders (NDDs) are character-
ized by deficits in the development of the central
nervous system that can affect a child’s memory,
language, motor function, and ability to learn, socialize, and
maintain self-control. They frequently co-occur and may be
associated with severe impairments of functioning in adult-
hood. Neurodevelopmental disorders are clinically diag-
nosed by evaluating the presence of aberrant behaviors or
delays in achieving developmental milestones and by com-
paring such behaviors with those of children of the same age,
sex, and culture.1
Existing data on the occurrence of NDDs are primarily
from cross-sectional studies, surveys, or small prospective
studies.2-13 Although cross-sectional studies provide snap-
shots of a single moment, they cannot easily define temporal
trends and associations. Surveys can help quickly gather large
data but are susceptible to limitations, such as survey fa-
tigue, nonobjective responses, and low completion rates,
raising concerns regarding the representativeness of the
sample. Prospective cohort studies allow for close follow-up
over time and are well suited to document subtle manifesta-
tions of NDDs (eg, abnormal cognitive test scores or behavior
assessments), but they tend to be too small to evaluate the
risk of more debilitating conditions, such as autism spectrum
disorder (ASD), and can be challenged by substantial and
potentially informative losses to follow-up, especially when
cohorts are followed up from birth.
Because NDDs encompass a variety of phenotypes with
multiple symptoms and severity levels, measurement varies
considerably across studies, making comparisons difficult, es-
pecially because many studies do not report or insufficiently
report on the validity of the diagnostic criteria and the algo-
rithms used.14 Between-study comparisons are further ham-
pered by differences in the study population, including the
selected age range of children under study, the study period,
and sociodemographic variations that could serve as barriers
to diagnosis (eg, because of lack of access to specialized health
services).2
Neurodevelopmental disorders are an important public
health concern, and studies assessing risk factors at the
population level are needed to help identify opportunities
for prevention, early diagnosis, and intervention. Large-
scale studies using data on nationwide health care use are
well suited for this purpose. Such data sources provide pro-
spectively collected, comprehensive real-world information
on demographic characteristics and medical conditions for
population-based cohorts and are free of some of the prob-
lems that affect other types of data (eg, response bias, small
size, and lack of generalizability). Nevertheless, data are col-
lected for administrative purposes. Thus, when used for
research, algorithms need to be developed and applied to
measure health conditions (such as NDDs) that might not
perfectly reflect the patient’s actual status owing to variabil-
ity in the quality of clinical diagnosis and recording. Using
information from 2 large population-based health care data-
bases and validated outcome algorithms, we sought to
assess the nationwide incidence and timing of the diagnosis
of specific NDDs and their co-occurrence in publicly and pri-
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Original Investigation Research
Key Points
Question How do the incidence and timing of the diagnosis of
neurodevelopmental disorders among children in the US differ
by population characteristics?
Findings In this cohort study of more than 3.3 million children,
approximately 1 in 4 publicly and 1 in 9 privately insured children
had received a diagnosis of a neurodevelopmental disorder by
8 years of age; the risk was considerably higher among boys and
White children. For most disorders, privately insured children
tended to receive a diagnosis earlier than publicly insured children.
Meaning Because neurodevelopmental disorders are common
and risks may be ameliorated with early intervention, identifying
modifiable risk factors and opportunities for early intervention
is needed.
vately insured children in the US and to evaluate differences
by population characteristics.
Methods
Data Source and Study Design
We conducted a cohort study of publicly and privately in-
sured children nested in the 2000-2014 Medicaid Analytic
eXtract (MAX) (the most recent years available at the time of
study conduct) and the 2003-2015 IBM MarketScan Research
Database (MarketScan). The development of the MAX mother-
child cohort has been described previously.15 A similar ap-
proach was used for the development of the MarketScan co-
hort (for a detailed description of the cohorts, see eAppendix
1 in the Supplement). Linkage to maternal records allowed for
the examination of the association of maternal characteris-
tics, such as age, diabetes, and hypertension, with NDDs in
offspring. Both data sources include rich patient-level infor-
mation on demographic factors; diagnosis and procedure
claims recorded during inpatient, outpatient, or emergency
department visits; and outpatient prescription medication
dispensings. Children were followed up from birth until their
continuous eligibility ended, the study period ended, they de-
veloped the specific NDD of interest, they died, or they reached
their 12th birthday (to harmonize the maximum follow-up
in both cohorts), whichever came first. The research was
approved by the institutional review board at Brigham and
Women’s Hospital, which granted a waiver of informed con-
sent because the data were deidentified. We followed the
Strengthening the Reporting of Observational Studies in
Epidemiology (STROBE) reporting guideline.
Identification of NDDs
Outcomes of interest were the most common NDDs: (1) ASD,
(2) attention-deficit/hyperactivity disorder and other hyper-
kinetic syndromes of childhood (ADHD), (3) learning disabil-
ity, (4) developmental speech or language disorder, (5) devel-
opmental coordination disorder (DCD), (6) intellectual
disability, (7) behavioral disorder (including disturbance of con-
duct and disturbance of emotions), and (8) any NDD (defined
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 Research Original Investigation Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US
based on the presence of any of the specific 7 preceding dis-
orders) (eTable 1 in the Supplement). The presence of the
individual outcomes was assessed using validated claims-
based algorithms.16
Patient Characteristics
We considered the presence of co-occurring NDDs, as well as
demographic factors (including child’s sex, geographic re-
gion, birth year, and race and ethnicity). No information on race
and ethnicity was available in MarketScan; in MAX, race and
ethnicity were determined on the basis of information sub-
mitted to the Centers for Medicare & Medicaid Services by in-
dividual states, which was based on information that had been
collected and coded from Medicaid applications. We also con-
sidered selected maternal and birth conditions previously re-
ported to be associated with NDDs to evaluate whether such
crude associations could be replicated in our data, thus sup-
porting the validity of these data sources for studying NDDs.
Maternal conditions included maternal age at delivery, preex-
isting hypertension, preexisting diabetes, gestational diabe-
tes, and preeclampsia. Maternal age was assessed because
mothers of older age are more likely to experience pregnancy
or delivery complications that in turn might increase the risk
of NDDs, their age might reflect a longer cumulative expo-
sure to potential risk factors for NDDs (eg, environmental fac-
tors), and they might also be more likely to seek professional
medical advice to evaluate their child’s behavior. Birth con-
ditions included low birth weight, small size for gestational age,
preterm birth (>28 and <37 weeks’ gestation), very preterm
birth (≤28 weeks’ gestation), and neonatal hypoxia or as-
phyxia. The specific variables and their respective assess-
ment periods are presented in the Table17 and eTable 2 in the
Supplement.
Statistical Analysis
Data were analyzed between May 1, 2020, and June 30, 2021.
All analyses were conducted separately for publicly (MAX) and
privately (MarketScan) insured children. We used Kaplan-
Meier analyses to estimate the risk of each outcome through-
out childhood, plotted unadjusted cumulative incidence curves
with 95% CIs accounting for losses to follow-up (ie, end of en-
rollment or end of data) (Figure 1 and Figure 2), and stratified
analyses by demographic factors (eFigure 1 in the Supple-
ment). To explore variations in age at diagnosis, we calcu-
lated the mean age and 95% CI at which the respective out-
comes of interest (ie, NDDs) were first diagnosed, and we
assessed differences in mean age by insurance type, child’s
sex, maternal age, and race and ethnicity (Figure 3; eFigure 2
in the Supplement). Details on how these parameters were
estimated are shown in eAppendix 2 in the Supplement.
Characteristics were compared between children with the
specific NDD of interest and children without any NDD after
1:4 matching by state (because Medicaid eligibility require-
ments can vary by state) (Table17; eTable 1 in the Supple-
ment). Children without any NDD were identified using an
extended definition that also included other neurodevelop-
mental, mental, or behavioral disorders (eTable 1 in the Supple-
ment). They were further required to still be under follow-up
234 JAMA Psychiatry March 2022 Volume 79, Number 3 (Reprinted)
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(±60 days) at the age of first diagnosis of the matching case be-
cause children with shorter follow-up have less opportunity
to receive a diagnosis of an NDD. We also evaluated the fre-
quency of co-occurring NDDs.
There is potential for informative censoring because indi-
viduals who disenroll might be different from those who re-
main enrolled. Health policy and economic changes may affect
who qualifies for public and private insurances and for how
long people stay enrolled. In addition, children with more
health issues and/or who are born to mothers with more co-
morbidities might be eligible for Medicaid for a longer period
than healthier children. Thus, to assess whether such poten-
tially informative loss to follow-up was present and might have
been associated with the generalizability of our findings to the
broader pediatric US population, we explored potential varia-
tions in selected patient characteristics by length of the child’s
enrollment after birth in supplementary analyses (eFigure 3
and eTable 3 in the Supplement). All analyses were per-
formed using SAS, version 9.4 (SAS Institute Inc).
Results
The cohorts consisted of 2 070 541 publicly insured children
(MAX; 1 045 426 boys [50.5%]) and 1 309 900 privately in-
sured children (MarketScan; 667 607 boys [51.0%]) enrolled
at birth. Of these, 54.2% (MAX) and 45.6% (MarketScan) were
continuously followed up for at least the first 2 years of
life. The corresponding proportions were 21.8% (MAX) and
14.2% (MarketScan) for 5 years and 8.3% (MAX) and 4.4%
(MarketScan) for 8 years. There was no evidence of informa-
tive censoring due to loss of insurance coverage over time
(eFigure 3 and eTable 3 in the Supplement).
Incidence of NDDs
By 8 years of age, 23.9% of publicly insured children and 11.0%
of privately insured children received a diagnosis of 1 or more
NDDs (Figure 1 and Figure 2). Incidences were 1.6% and 1.3%
for ASD, 14.5% and 5.8% for ADHD, 1.2% and 0.6% for learning
disability, 8.4% and 4.5% for speech or language disorder, 0.9%
and 0.7% for DCD, 0.7% and 0.1% for intellectual disability,
and 8.4% and 1.5% for behavioral disorder, respectively.
For all outcomes of interest, the incidence was much higher
in boys than in girls (incidence of ≥1 NDD by age 8 years, 30.7%
vs. 16.7% among publicly insured children and 15.0% vs. 6.7%
among privately insured children), with the strongest discrep-
ancy observed for ASD in both cohorts (2.5% vs. 0.7% among
publicly insured children and 2.0% vs. 0.5% among privately
insured children; eFigure 1 in the Supplement). Compared with
children born in the early 2000s, those born in later years had
slightly steeper incidence curves for ASD, speech or language
disorder, and DCD (incidence of ASD by age 4 years [the high-
est age available in the data for those born in the more recent
years] among children born before or during 2005 vs those
born during or after 2010: 0.5% vs 1.0% among publicly
insured children and 0.5% vs 0.7% among privately insured
children), suggesting more and/or earlier diagnoses; they
had slightly more shallow incidence curves for ADHD and
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 Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US Original Investigation Research

Table. Select Patient Characteristics After 1:4 Matching by State and Follow-upa

Any specific NDD, No. (%) ASD, No. (%) ADHD, No. (%)
Children with Children Children with Children Children with Children
the outcome without the outcome without the outcome without
Characteristic of interestb any NDDc of interestb any NDDc of interestb any NDDc
Public insurance
Total 71 604 286 416 10 093 40 372 33 259 133 036
Follow-up, mean (SD), y 5.3 (2.1) 5.2 (2.1) 6.8 (2.8) 6.7 (2.9) 7.3 (2.0) 7.23 (2.0)
Maternal age at delivery, 24.8 (5.9) 24.7 (6.0) 25.8 (6.2) 24.7 (6.0) 23.9 (5.5) 24.6 (6.0)
mean (SD), y
Sex
Male 47 193 (65.9) 137 567 (48.0) 7703 (76.3) 18 869 (46.7) 23 171 (69.7) 61 979 (46.6)
Female 23 409 (32.7) 146 556 (51.2) 2207 (21.9) 21 181 (52.5) 9678 (29.1) 70 045 (52.7)
Unknown 1002 (1.4) 2293 (0.8) 183 (1.8) 322 (0.8) 410 (1.2) 1012 (0.8)
Region
Northeast 16 899 (23.6) 67 596 (23.6) 2586 (25.6) 10 344 (25.6) 6010 (18.1) 24 040 (18.1)
Midwest 19 721 (27.5) 78 884 (27.5) 2997 (29.7) 11 988 (29.7) 9852 (29.6) 39 408 (29.6)
South 18 597 (26.0) 74 388 (26.0) 2689 (26.6) 10 756 (26.6) 11 066 (33.3) 44 264 (33.3)
West 16 387 (22.9) 65 548 (22.9) 1821 (18.0) 7284 (18.0) 6331 (19.0) 25 324 (19.0)
Year of birth
Before 2006 16 913 (23.6) 84 379 (29.5) 3928 (38.9) 18 752 (46.5) 14 640 (44.0) 61 943 (46.6)
2006-2009 39 143 (54.7) 149 064 (52.0) 4353 (43.1) 15 923 (39.4) 17 675 (53.1) 67 192 (50.5)
After 2009 15 548 (21.7) 52 973 (18.5) 1812 (18.0) 5697 (14.1) 944 (2.8) 3901 (2.9)
Race and ethnicityd
Asian or Pacific Islander 2084 (2.9) 13 488 (4.7) 322 (3.2) 1688 (4.2) 398 (1.2) 5254 (4.0)
Black or African American 19 963 (27.9) 97 518 (34.1) 2660 (26.4) 15 036 (37.2) 10 263 (30.9) 52 515 (39.5)
Hispanic or Latino 9452 (13.2) 40 893 (14.3) 1106 (11.0) 4748 (11.8) 3295 (9.9) 16 655 (12.5)
White 33 071 (46.2) 10 8112 (37.8) 4848 (48.0) 15 402 (38.2) 17 283 (52.0) 49 933 (37.5)
Other or unknowne 7034 (9.8) 26 405 (9.2) 1157 (11.5) 3498 (8.7) 2020 (6.1) 8679 (6.5)
Maternal conditions
Preexisting hypertension 2286 (3.2) 6519 (2.3) 385 (3.8) 933 (2.3) 1012 (3.0) 3077 (2.3)
Preeclampsia 4595 (6.4) 14 408 (5.0) 653 (6.5) 2008 (5.0) 2037 (6.1) 6601 (5.0)
Preexisting diabetes 2642 (3.7) 7238 (2.5) 444 (4.4) 988 (2.5) 1078 (3.2) 3121 (2.4)
Gestational diabetes 136 (0.2) 422 (0.2) 20 (0.2) 57 (0.1) 53 (0.2) 202 (0.2)
Obstetric conditions
Low birth weight 5805 (8.1) 12 016 (4.2) 762 (7.6) 1724 (4.3) 2107 (6.3) 5765 (4.3)
Small for gestational age 2943 (4.1) 8406 (2.9) 364 (3.6) 1134 (2.8) 1104 (3.3) 3626 (2.7)
Neonatal hypoxia or asphyxia 756 (1.1) 2191 (0.8) 108 (1.1) 358 (0.9) 337 (1.0) 1187 (0.9)
Preterm birth (>28 and 10 846 (15.2) 27 244 (9.5) 1521 (15.1) 3788 (9.4) 4306 (13.0) 12 809 (9.6)
<37 wk gestation)
Very preterm birth (≤28 wk 1296 (1.8) 1444 (0.5) 146 (1.5) 210 (0.5) 318 (1.0) 670 (0.5)
gestation)
No. of specific NDDs, mean (SD) 1.3 (0.6) NA 2.3 (1.1) NA 1.7 (0.8) NA
Private insurancef
Total 32 426 129 704 3847 15 388 8260 33 040
Follow-up, mean (SD), y 5.7 (2.7) 5.6 (2.7) 5.9 (2.4) 5.9 (2.5) 8.5 (1.9) 8.4 (1.9)
Maternal age at delivery, 32.7 (4.7) 32.3 (4.6) 33.1 (4.8) 32.4 (4.6) 32.1 (4.8) 32.2 (4.5)
mean (SD), y
Sex
Male 22 229 (68.6) 64 094 (49.4) 3002 (78.0) 7534 (49.0) 5942 (71.9) 16 045 (48.6)
Female 9395 (29.0) 64 461 (49.7) 726 (18.9) 7695 (50.0) 2168 (26.3) 16 710 (50.6)
Unknown 802 (2.5) 1149 (0.9) 119 (3.1) 159 (1.0) 150 (1.8) 285 (0.9)
Region
Northeast 6075 (18.7) 24 300 (18.7) 973 (25.3) 3892 (25.3) 934 (11.3) 3736 (11.3)
Midwest 8649 (26.7) 34 596 (26.7) 825 (21.5) 3300 (21.5) 2140 (25.9) 8560 (25.9)
South 12 901 (39.8) 51 604 (39.8) 1398 (36.3) 5592 (36.3) 4440 (53.8) 17 760 (53.8)
West 4582 (14.1) 18 328 (14.1) 620 (16.1) 2480 (16.1) 699 (8.5) 2796 (8.5)

(continued)

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 Research Original Investigation Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US

Table. Select Patient Characteristics After 1:4 Matching by State and Follow-upa (continued)

Any specific NDD, No. (%) ASD, No. (%) ADHD, No. (%)
Children with Children Children with Children Children with Children
the outcome without the outcome without the outcome without
Characteristic of interestb any NDDc of interestb any NDDc of interestb any NDDc
Year of birth
Before 2006 4491 (13.9) 20 395 (15.7) 525 (13.7) 2408 (15.7) 2692 (32.6) 10 629 (32.2)
2006-2009 13 670 (42.2) 57 992 (44.7) 1731 (45.0) 7227 (47.0) 5019 (60.8) 20 101 (60.8)
After 2009 14 265 (44.0) 51 317 (39.6) 1591 (41.4) 5753 (37.4) 549 (6.7) 2310 (7.0)
Maternal conditions
Preexisting hypertension 943 (2.9) 2797 (2.2) 121 (3.2) 332 (2.2) 225 (2.7) 703 (2.1)
Preeclampsia 2807 (8.7) 7458 (5.8) 361 (9.4) 886 (5.8) 694 (8.4) 1835 (5.6)
Preexisting diabetes 978 (3.0) 2910 (2.2) 141 (3.7) 340 (2.2) 270 (3.3) 713 (2.2)
Gestational diabetes 40 (0.1) 169 (0.1) 4 (0.1) 14 (0.1) 5 (0.1) 45 (0.1)
Obstetric conditions
Low birth weight 2512 (7.8) 3958 (3.1) 287 (7.5) 451 (2.9) 457 (5.5) 980 (3.0)
Small for gestational age 1372 (4.2) 3345 (2.6) 149 (3.9) 374 (2.4) 222 (2.7) 626 (1.9)
Neonatal hypoxia or asphyxia 291 (0.9) 895 (0.7) 38 (1.0) 102 (0.7) 58 (0.7) 238 (0.7)
Preterm birth (>28 and 4847 (15.0) 10 316 (8.0) 577 (15.0) 1239 (8.1) 1009 (12.2) 2575 (7.8)
<37 wk gestation)
Very preterm birth 674 (2.1) 632 (0.5) 77 (2.0) 67 (0.4) 96 (1.2) 188 (0.6)
(≤28 wk gestation)
No. of specific NDDs, mean (SD) 1.2 (0.5) NA 2.0 (0.8) NA 1.5 (0.8) NA
Abbreviations: ADHD, attention-deficit/hyperactivity disorder or hyperkinetic using an extended definition that also includes other developmental, neurotic,
syndrome of childhood; ASD, autism spectrum disorder or pervasive and personality disorders (eTable 1 in the Supplement). Children with the
developmental disorder; LMP, last menstrual period; NA, not available; specific NDD of interest and those without any NDD were 1:4 matched on
NDD, neurodevelopmental disorder. state and duration of follow-up after birth (±60 days).
a d
The following assessment periods were used for the respective covariates: Race and ethnicity were determined on the basis of information submitted to
first date of LMP minus 90 days to LMP plus 90 days: preexisting the Centers for Medicare & Medicaid Services by individual states, which was
hypertension; LMP minus 90 days to LMP plus 140 days: preexisting diabetes; based on information that had been collected and coded from Medicaid
LMP plus 140 days to delivery: gestational diabetes; LMP plus 140 days to applications.
delivery plus 30 days: preeclampsia; delivery to delivery plus 30 days: preterm e
Race and ethnicity category “other or unknown” includes the following races
or very preterm birth, low birth weight, and small for gestational age; and and ethnicities: American Indian or Alaska Native, Native Hawaiian or Other
delivery hospitalization: neonatal hypoxia or asphyxia. Last menstrual period Pacific Islander, Hispanic or Latino and 1 or more races, more than 1 race, and
and gestational age at birth were estimated using a previously validated unknown. The category “Hispanic or Latino” includes Hispanic or Latino with
algorithm that is based on diagnostic codes for preterm birth recorded in no race information available, whereas “other or unknown” includes Hispanic
either the maternal or infant claims within the first month after delivery or or Latino with 1 or more races.
birth.17 f
Information on race and ethnicity not available in the privately insured cohort
b
Cohort includes all children with the specific NDD of interest. (MarketScan).
c
Cohort consists of a sample of children without any NDD, which is defined

intellectual disability (incidence of ADHD at age 4 years, 1.4%
vs. 0.7% among publicly insured children and 0.2% vs. 0.1%
among privately insured children), suggesting fewer and/or later
diagnoses. We found no temporal trends for diagnoses of learn-
ing disability and behavioral disorder. These birth cohort pat-
terns held up for both publicly and privately insured children
(eFigure 1 in the Supplement). For publicly insured children, the
incidence of any NDD was higher for those born to younger
mothers, (incidence of any NDD by age 8 years among those
born to mothers aged ≤24 years vs ≥35 years, 25.7% vs 18.9%),
which was largely associated with ADHD and behavioral disor-
der. A similar difference by maternal age for any NDD was not
observed among privately insured children (incidence of any
NDD by age 8 years among those born to mothers aged ≤24 years
vs ≥35 years, 10.4% vs. 11.7%). Autism spectrum disorder and
DCD were diagnosed more commonly among the offspring of
mothers aged 35 years or older in both cohorts (incidence of ASD
by age 8 years among those born to mothers aged ≤24 years vs
≥35 years, 1.4% vs 2.3% among publicly insured children and
1.1% vs 1.6% among privately insured children). Speech or lan-
guage disorders were more commonly diagnosed among pri-
vately insured children born to older mothers, but a similar pat-
tern was not seen among publicly insured children (incidence
by age 8 years among those born to mothers aged ≤24 years vs
≥35 years, 3.3% vs 5.3% among privately insured children and
8.3% vs 8.1% among publicly insured children). No clear differ-
ences by maternal age were seen for the other outcomes (eFig-
ure 1 in the Supplement). We further found strong differences
by race and ethnicity in the public insurance cohort, with all
outcomes being least common among Asian children and most
common among White children (incidence of any NDD by age
8 years among Asian vs White children, 9.1% vs. 30.2%),
except for intellectual disability, which was most frequently
diagnosed among children of Asian origin (1.5% among Asian
children vs ≤0.9% among children of other races and ethnici-
ties) (eFigure 1 in the Supplement).
Age at Diagnosis
Diagnoses were typically made earlier among privately in-
sured children compared with publicly insured children, but

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 Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US Original Investigation Research

Figure 1. Cumulative Incidence Curves for Any Neurodevelopmental Disorder (A), Autism Spectrum Disorder (B),
Attention-Deficit/Hyperactivity Disorder (C), and Learning Disability (D) by Insurance Type

A Any neurodevelopmental disorder

45

Cumulative incidence , %
40 Public insurance
35 Private insurance
30
25
20
15
10
5
0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 665 752 1 106 543 784 612 559 445 402 350 280 201 189 471 127 480 81 157 46 682 25 710 9925
Private insurance 913 523 589 023 390 323 260 931 176 368 117 453 78 158 50 897 30 025 14 705 5233 109

B Autism spectrum disorder

3.5
Cumulative incidence , %

3.0
2.5
2.0
1.5
1.0
0.5
0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 668 213 1 121 673 816 580 599 885 447 810 329 096 236 670 168 404 112 683 67 403 37 933 14 599
Private insurance 914 736 597 292 401 899 270 586 184 368 124 353 84 522 56 372 34 005 16 938 6111 124

C Attention-deficit/hyperactivity disorder
30
Cumulative incidence , %

25

20

15

10

0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 668 213 1 122 741 817 469 596 286 436 647 308 325 211 029 143 531 92 456 53 744 29 745 11 495
Private insurance 914 736 597 835 403 268 271 801 184 685 123 199 82 005 53 441 31 556 15 399 5491 115

D Learning disability

4.5
Cumulative incidence , %

4.0
3.5
3.0
2.5
2.0
1.5
1.0
0.5
0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 668 213 1 122 741 819 431 603 483 451 326 331 837 238 389 169 305 112 964 67 445 37 833 14 578
Private insurance 914 736 597 835 403 378 272 247 185 828 125 457 85 289 56 844 34 245 17 016 6140 127

Solid lines indicate cumulative incidences, and dashed lines indicate 95% CIs.

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 Research Original Investigation Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US

Figure 2. Cumulative Incidence Curves for Developmental Speech or Language Disorder (A), Developmental Coordination Disorder (B),
Intellectual Disability (C), and Behavioral Disorder (D) by Insurance Type

A Developmental speech/language disorder

14

Cumulative incidence , %
12 Public insurance
Private insurance
10
8
6
4
2
0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 668 213 1 109 792 794 005 575 936 425 746 310 414 221 687 156 829 104 265 62 145 35 032 13 620
Private insurance 914 736 590 546 392 161 263 112 179 081 120 915 82 353 55 051 33 281 16 604 5987 122

B Developmental coordination disorder

1.8
Cumulative incidence , %

1.6
1.4
1.2
1.0
0.8
0.6
0.4
0.2
0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 665 752 1 119 223 816 032 601 050 449 761 331 155 238 563 170 113 114 031 68 284 38 467 14 863
Private insurance 913 523 596 246 402 118 271 356 185 124 124 981 85 048 56 800 34 308 17 103 6169 127

C Intellectual disability
2.0
Cumulative incidence , %

1.5

1.0

0.5

0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 668 213 1 122 741 819 215 603 155 451 027 331 797 238 668 169 909 113 629 67 919 38 178 14 677
Private insurance 914 736 597 835 403 442 272 321 185 927 125 579 85 473 57 103 34 490 17 177 6202 129

D Behavioral disorder

18
Cumulative incidence , %

16
14
12
10
8
6
4
2
0
0 1 2 3 4 5 6 7 8 9 10 11 12
Age, y
No. at risk
Public insurance 1 668 213 1 122 741 814 859 593 866 437 736 315 934 222 634 155 318 102 122 59 968 33 419 12 787
Private insurance 914 736 597 835 403 025 271 505 184 799 124 394 84 396 56 220 33 875 16 858 6083 128

Solid lines indicate cumulative incidences, and dashed lines indicate 95% CIs.

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 Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US Original Investigation Research

Figure 3. Mean Age at Diagnosis of Specific Neurodevelopmental Disorder by Insurance Type

Difference in mean Earlier diagnosis Earlier diagnosis

Mean age at diagnosis age at diagnosis for publicly for privately
Outcome (95% CI), y (95% CI), y insured children insured children
Any neurodevelopmental disorder
Publicly insured 6.31 (6.28 to 6.34) 0.11 (0.02 to 0.20)
Privately insured 6.20 (6.12 to 6.29) 1 [Reference]
Autism spectrum disorder
Publicly insured 5.98 (5.84 to 6.12) 0.27 (–0.13 to 0.67)
Privately insured 5.71 (5.33 to 6.08) 1 [Reference]
Attention-deficit/hyperactivity disorder
Publicly insured 7.16 (7.13 to 7.19) –0.54 (–0.63 to –0.46)
Privately insured 7.70 (7.62 to 7.78) 1 [Reference]
Learning disability
Publicly insured 8.48 (8.39 to 8.58) 0.08 (–0.14 to 0.29)
Privately insured 8.41 (8.21 to 8.60) 1 [Reference]
Developmental speech/language disorder
Publicly insured 4.96 (4.91 to 5.01) 1.43 (1.30 to 1.55)
Privately insured 3.53 (3.42 to 3.65) 1 [Reference]
Developmental coordination disorder
Publicly insured 4.40 (4.25 to 4.56) 0.28 (–0.06 to 0.61)
Privately insured 4.13 (3.83 to 4.43) 1 [Reference]
Intellectual disability
Publicly insured 7.27 (7.09 to 7.45) –0.45 (–1.18 to 0.29)
Privately insured 7.72 (7.00 to 8.43) 1 [Reference]
Behavioral disorder
Publicly insured 7.20 (7.15 to 7.26) 0.39 (0.17 to 0.61)
Privately insured 6.81 (6.60 to 7.03) 1 [Reference]

–2.0 –1.5 –1.0 –0.5 0 0.5 1.0 1.5 2.0

Difference in mean age at diagnosis (95% CI), y

differences were generally small and nonsignificant. The ex-
ception was ADHD, which was diagnosed, on average, half
a year earlier, and speech or language disorders, which were
diagnosed 1.5 years later among publicly insured children
(Figure 3).
Attention-deficit/hyperactivity disorder and speech or lan-
guage disorders tended to be diagnosed slightly earlier (3-4
months) among boys than girls, whereas DCD was diagnosed
later, particularly among privately insured boys (1.4 years)
(eFigure 2 in the Supplement). Overall, NDDs were diagnosed
somewhat earlier in offspring of older mothers, but no con-
sistent and clear pattern was observed across specific NDDs
(eFigure 2 in the Supplement). Last, when assessing varia-
tions by race and ethnicity among publicly insured children,
we found that ASD was consistently diagnosed later and
ADHD was consistently diagnosed earlier in White children
compared with children with other racial and ethnic back-
grounds. Furthermore, Asian children were typically diag-
nosed earlier than White children for most outcomes, with the
strongest discrepancy for DCD (mean, 2.7 years). Except for
ADHD, there was no substantial difference in age at diagnosis
between Black and White children for other specific NDDs
(eFigure 2 in the Supplement).
Patient Characteristics
Compared with children without NDDs, those who received
a diagnosis of an NDD were more likely to be born to mothers
with preexisting diabetes (3.7% vs 2.5%), hypertension (3.2%
vs 2.3%), and preeclampsia (6.4% vs 5.0%) (Table17; eTable 2
in the Supplement). Children who received a diagnosis of an
NDD were more often White (MAX; 46.2% vs 37.8%), male
(65.9% vs 48.0%), and born preterm (15.2% vs 9.5%), small for
gestational age (4.1% vs 2.9%), and with low birth weight (8.1%
vs 4.2%) compared with children without NDDs. These asso-
ciations were observed for all specific disorders and were most
pronounced for DCD.
Co-occurring NDDs
Co-occurring NDD diagnoses were frequent; 23.0% of the pub-
licly insured and 17.9% of the privately insured children with
NDDs had 1 or more other NDD. The highest frequency (>70%)
of co-occurring NDDs was observed for children with either ASD
or intellectual disability, with about half the children also re-
ceiving a diagnosis of speech or language disorder. Similarly,
nearly half of all children with either a learning disability or
a behavioral disorder also received a diagnosis of ADHD in
both cohorts (eTable 2 in the Supplement). The most com-
mon combinations of NDDs are presented in Figure 4.
Discussion
Using large health care databases of private and public insur-
ance beneficiaries, we described the incidence, age at first di-
agnosis, demographic variation, and co-occurrence of spe-
cific NDDs among children. By the age of 8 years, approximately

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 Research Original Investigation
Figure 4. Most Common Combinations of Specific Neurodevelopmental Disorders (NDDs)
Among Publicly and Privately Insured Children With 2 or More Diagnosed Disorders
ADHD and behavioral
disorder
ADHD and speech
language disorder
ADHD, speech/language disorder,
and behavioral disorder
Speech language disorder and
behavioral disorder
Speech language disorder
and DCD
ASD and speech language
disorder
ADHD and learning
disability
ASD and ADHD
Other combinations
0 5 10 15
Children with ≥2 diagnosed NDDs, %
1 in 4 publicly insured and 1 in 9 privately insured children in
the US received a diagnosis of an NDD, the risk of which was
considerably higher among boys (both cohorts) and White chil-
dren (public insurance cohort). The risk was largely associ-
ated with ADHD, speech or language disorders, and behav-
ioral disorders. Although the incidence was lower for privately
insured children, diagnoses were typically made somewhat
earlier among privately insured children compared with pub-
licly insured children. Co-occurring NDDs were common,
with the highest frequency observed among children with ASD
and intellectual disability (with >70% of these children hav-
ing ≥1 other NDD).
Zablotsky and colleagues2 recently investigated the preva-
lence and patterns of a range of NDDs among children 3 to 17
years of age using data from the 2009-2017 National Health
Interview Survey (NHIS), an annual survey intended to pro-
vide nationally representative estimates. The authors re-
ported an overall prevalence of any NDD (defined as ASD,
ADHD, learning disability, intellectual disability, blindness,
cerebral palsy, hearing loss, seizures, stuttering or stammer-
ing, and other developmental delay) of 16.9% and, similar to
our results, found that boys, non-Hispanic White children, chil-
dren with low birth weight, and children with public insur-
ance were more likely to receive a diagnosis of an NDD. They
reported a prevalence of 13.8% for any NDD among privately
insured children (vs an incidence of 11.0% by 8 years of age
in our study) and of 21.8% among publicly insured children
(vs 23.9% in our study). However, direct comparisons should
be made with caution. The NHIS data were used to estimate
the prevalence among 3- to 17-year-old children at the time
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Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US
Publicly insured children
Privately insured children
ADHD indicates attention-deficit/
hyperactivity disorder; ASD, autism
20 25 30 35 40 spectrum disorder; and
DCD, developmental coordination
disorder.
ofthe survey, whereas we report the incidence up to a certain
age for a cohort followed up from birth. The NHIS includes
disabilities that can be caused by general medical conditions
(eg, blindness and hearing loss) but do not specifically con-
tain information about DCD, behavioral disorder, and speech
or language disorder (other than stuttering or stammering).
Beyond the NHIS, other data on NDDs are typically de-
rived from surveys (eg, the US National Survey of Children’s
Health3 and the National Center for Learning Disabilities
survey4), network programs (eg, the Centers for Disease Con-
trol and Prevention–funded Autism and Developmental Dis-
abilities Monitoring Network5 and the Metropolitan Atlanta
Developmental Disabilities Surveillance Program6-8), and pro-
spective longitudinal or cross-sectional studies.9-13 Corrobo-
ration of the observed NDD patterns is challenging owing to
differences in study design, outcome ascertainment, assess-
ment period, and population characteristics. For instance, with
respect to outcome ascertainment, DCD has previously been
reported in 1.4% to 19% of all children, depending on whether
the definition is restricted to severe coordination difficulties
that interfere with activities of daily living or based on failed
standardized tests of motor coordination.9-12 Authors of a re-
cent systematic review reported that, among 110 included
studies on child neurodevelopment after in utero exposure
to psychotropics or analgesics, outcomes were assessed with
47 different psychometric instruments and 13 diagnostic al-
gorithms, with most studies not reporting or insufficiently
reporting on the validity of these measures.14 Although ad-
ministrative databases have previously been used to assess
NDDs during childhood, such studies usually focused on preva-
jamapsychiatry.com
 Neurodevelopmental Disorders Among Children With Public or Private Insurance in the US Original Investigation Research

lence rather than cumulative incidence or on a single or a small
group of conditions.18-22
Strengths and Limitations
This study has some strengths. We used large established nation-
wide population-based birth cohorts of publicly and privately
insured children (linked to their mothers), which are broadly
representative of the entire pediatric population in the US.
This allowed us to directly compare the incidence of specific
NDDs ascertained using previously validated algorithms between
these 2 insurance types and to explore diagnosis patterns up to
12 years of age, given the longitudinal nature of the data.
Despite these strengths, our study is subject to some limi-
tations. Owing to a significant lag time in the availability of
Medicaid data, nationwide data were available up to 2014 at
the time the study was conducted. Our data therefore repre-
sent the most recent nationwide estimates available for the
Medicaid-insured population. We chose a similar study pe-
riod for the MarketScan cohort to facilitate the comparison be-
tween publicly and privately insured children. Second, when
conducting research using data on health care use, we infer ab-
sence of the condition based on absence of a recorded diag-
nosis. Neurodevelopmental disorders that were not recorded
or did not meet our highly specific definition were missed,
which could have resulted in an underestimation of the true
incidence. On the other hand, relying on diagnostic codes alone
might have led to inclusion of children with diagnostic codes
for NDDs who would not have been classified as having the out-
come based on clinical guidelines.23 However, the use of stricter
algorithm requirements with high positive predictive values
reduced the potential for the inclusion of coding errors, ruled-
out diagnoses, and minor developmental issues and allowed
us to focus on more clinically significant conditions. Finally,
while we examined co-occurrence of multiple NDDs, we were
not able to assess whether diagnoses of different NDDs were
perhaps manifestations of the same underlying disorder.
Conclusions
Our findings have research, clinical, and policy implications. This
study demonstrates the feasibility and advantages of using birth
cohorts nested in health care databases to study NDDs. It has
laid the groundwork that will enable research to increase our
understanding of the role of factors such as maternal morbidi-
ties and advanced paternal age (which has been suggested to
be associated with higher risk of ASD24) and to identify poten-
tial modifiable risk factors such as nutrition, drugs of abuse, and
other in utero drug exposures. The available information on en-
vironmental factors during critical periods of development and
growth, coupled with information on the timing of the diagno-
sis of health outcomes, should also support research related to
the Developmental Origins of Health and Disease hypothesis.25
Our findings that publicly insured children tended to receive a
diagnosis of NDDs somewhat later than privately insured chil-
dren and that there were substantial racial and ethnic discrep-
ancies in both incidence and age at diagnosis—even within a co-
hort where all children are publicly insured, and thus, expected
to be quite similar in terms of socioeconomic status—point to-
ward disparities in health service access and use, as has previ-
ously been reported for ASD,26,27 as well as to the overdiagno-
sis and/or underdiagnosis of these disorders in certain racial and
ethnic groups. As a next step, it will therefore be important to
explore potential associated factors, such as culturally differ-
ent perspectives on child behavior, communication barriers, and
differences in access to care. The difference in age at diagnosis
across cohorts could also point to differences in the distribu-
tion of underlying causes and in the severity of NDDs between
publicly and privately insured cohorts. For instance, genetic
causes might be associated with potentially more severe NDDs
that are apparent early in life, whereas environmental causes
(such as childhood infections, malnutrition, and maltreat-
ment) could be associated with NDDs that are less severe and
diagnosed later in life. Understanding the exact mechanisms as-
sociated with the discrepancies in the timing of diagnosis will
be an important focus for future work. The substantially higher
incidence and the tendency to earlier diagnosis in boys vs girls
is not necessarily associated with higher susceptibility of boys
to these disorders but might be partially due to symptoms pre-
senting differently in boys and girls, which may be associated
with both parental health care–seeking behaviors and clini-
cian diagnostic behaviors. For instance, girls tend to have more
subtle symptoms of ADHD that are harder to identify. Conse-
quently, these girls might be underdiagnosed and treated in-
sufficiently, which could further cause additional issues in the
future (eg, development of mental health disorders).28,29
The high incidence of NDDs, coupled with racial and so-
ciodemographic disparities, underscores the importance of
raising awareness of providing universal and timely access
to psychological and educational services to ensure that di-
agnosis, intervention, and support can start as soon as pos-
sible for all children with NDDs, with the goal of preventing
and/or mitigating long-term developmental deficits and eco-
nomic or other burdens on the family and society.

ARTICLE INFORMATION
Accepted for Publication: November 8, 2021.
Published Online: January 5, 2022.
doi:10.1001/jamapsychiatry.2021.3815
Author Affiliations: Division of
Pharmacoepidemiology and Pharmacoeconomics,
Department of Medicine, Brigham and Women’s
Hospital and Harvard Medical School, Boston,
Massachusetts (Straub, Bateman, York, Zhu,
Suarez, Mogun, Huybrechts); Department of
Anesthesiology, Perioperative and Pain Medicine,
Brigham and Women’s Hospital, Harvard Medical
School, Boston, Massachusetts (Bateman);
Department of Epidemiology, Harvard T.H. Chan
School of Public Health, Boston, Massachusetts
(Hernandez-Diaz); Center for the Study of Children
at Risk, Department of Psychiatry, Alpert Medical
School of Brown University, Women and Infants
Hospital, Providence, Rhode Island (Lester); Center
for the Study of Children at Risk, Department of
Pediatrics, Alpert Medical School of Brown
University, Women and Infants Hospital,
Providence, Rhode Island (Lester); The Asher
Center for the Study and Treatment of Depressive
Disorders, Department of Psychiatry and
Behavioral Sciences, Feinberg School of Medicine,
Northwestern University, Chicago, Illinois (Wisner);
Department of Obstetrics and Gynecology,
Feinberg School of Medicine, Northwestern
University, Chicago, Illinois (Wisner); Lurie Center
for Autism, Massachusetts General Hospital,
Lexington (McDougle); Department of Psychiatry,
Harvard Medical School, Boston, Massachusetts
(McDougle); Department of Neurology, University
of Pittsburgh School of Medicine, Pittsburgh,

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 Research Original Investigation
Pennsylvania (Pennell); Division of Maternal-Fetal
Medicine, Department of Obstetrics and
Gynecology, Brigham and Women’s Hospital,
Boston, Massachusetts (Gray).
Author Contributions: Drs Straub and Huybrechts
had full access to all the data in the study and take
responsibility for the integrity of the data and the
accuracy of the data analysis.
Concept and design: Straub, Bateman,
Hernandez-Diaz, Wisner, Huybrechts.
Acquisition, analysis, or interpretation of data:
Straub, Bateman, Hernandez-Diaz, York, Lester,
McDougle, Pennell, Gray, Zhu, Suarez, Mogun,
Huybrechts.
Drafting of the manuscript: Straub, York, Lester,
Wisner, Huybrechts.
Critical revision of the manuscript for important
intellectual content: Straub, Bateman,
Hernandez-Diaz, Lester, Wisner, McDougle,
Pennell, Gray, Zhu, Suarez, Mogun, Huybrechts.
Statistical analysis: Straub, Hernandez-Diaz, Lester,
Suarez, Mogun, Huybrechts.
Obtained funding: Hernandez-Diaz, Huybrechts.
Administrative, technical, or material support:
Straub, York, Wisner, Gray, Zhu.
Supervision: Bateman, Huybrechts.
Conflict of Interest Disclosures: Dr Bateman
reported receiving grants to his institution from
Pacira and UCB; and serving as a consultant to
Aetion Inc and the Alosa Health. Dr Hernandez-Diaz
reported receiving grants to her institution from
Takeda for unrelated studies; personal fees from
UCB and Roche outside the submitted work; and
having served as an epidemiologist with the North
America AED pregnancy registry, which is funded
by multiple companies. Dr McDougle reported
serving as a consultant to Precidiag and Receptor
Life; receiving payment for editorial services from
Springer Publishing; and receiving book royalties
from Springer Publishing and Oxford University
Press. Dr Pennell reported received contributing
author royalties from UpToDate Inc. Dr Gray
reported serving as a consultant to and receiving
nonfinancial support from Illumina Inc; and serving
as a consultant to and receiving personal fees from
Aetion and BillionToOne outside the scope of the
submitted work. Dr Zhu reported receiving grants
to her institution from Takeda and UCB for
unrelated studies. Dr Huybrechts reported
receiving grants from the National Institute of
Mental Health during the conduct of the study; and
research grants to Brigham and Women’s Hospital
from Eli Lilly, Takeda, and UCB for unrelated
studies. No other disclosures were reported.
Funding/Support: This study was supported by
grant R01 MH116194 from the National Institute of
Mental Health.
Role of the Funder/Sponsor: The National
Institute of Mental Health had no role in the design
and conduct of the study; collection, management,
analysis, and interpretation of the data; preparation,
review, or approval of the manuscript; and decision
to submit the manuscript for publication.
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