2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC
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2020
AUTISM AND DEVELOPMENTAL DISABILITIES
MONITORING (ADDM) NETWORK
A Snapshot of Autism Spectrum Disorder among
8-year-old Children in Multiple Communities across
the United States in 2016
Funded by the Centers for Disease Control and Prevention (CDC)
United States Department of Health and Human Services
This community report summarizes the main findings from the following published reports:
Maenner MJ, Shaw KA, Baio J, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and
Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ 2020, 69 (No. SS-4): 1-12.
Shaw KA, Maenner MJ, Baio J, et al. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years — Early Autism
and Developmental Disabilities Monitoring Network, Six Sites, United States, 2016. MMWR Surveill Summ 2020, 69 (No. SS-3): 1-11.
To read the full scientific report, please go to www.cdc.gov/mmwr
To read more about autism spectrum disorder, please visit CDC’s Autism Homepage at www.cdc.gov/autism
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the
Centers for Disease Control and Prevention.
3TABLE OF CONTENTS
Table of Contents
Executive Summary.........................................................................................6
Key Findings from the ADDM Network ................................................8
A SNAPSHOT OF AUTISM SPECTRUM DISORDER IN 2016
A Deeper Dive ...................................................................................................11
FREQUENTLY ASKED QUESTIONS ABOUT ADDM NETWORK DATA
Data Spotlights................................................................................................14
Closing the Racial and Ethnic Gap in the Identification of ASD ................ 15
Progress in Evaluation and Diagnosis of Autism Spectrum Disorder ........16
ADDM Network Data for Action ............................................................ 18
ADDM Network Site Snapshots ..............................................................21
Overview ........................................................................................................................ 22
Arizona .......................................................................................................................... 23
Arkansas ....................................................................................................................... 25
Colorado ...................................................................................................................... 27
Georgia ......................................................................................................................... 29
Maryland ...................................................................................................................... 31
Minnesota .................................................................................................................... 33
Missouri ........................................................................................................................ 35
New Jersey ................................................................................................................. 37
North Carolina ........................................................................................................... 39
Tennessee .................................................................................................................... 41
Wisconsin .................................................................................................................... 43
Glossary .............................................................................................................45
References.........................................................................................................47
5EXECUTIVE SUMMARY
Executive Summary
For more than two decades, CDC’s Autism and Developmental
Disabilities Monitoring (ADDM) Network has been tracking the
number and characteristics of children with autism spectrum
disorder (ASD) and other developmental disabilities in diverse
communities throughout the United States.
Key Findings At-A-Glance
These findings are based on the analysis of data collected from the health and
special education records (if available) of 8-year-old children who lived in one of
11 different areas throughout the United States in 2016.
• The estimated percentage of 8-year-old children identified with ASD is higher than
previous estimates from the ADDM Network.
• For the first time, ADDM Network data found no overall difference in the number of
black children identified with autism compared to white children. However, the number of
Hispanic children identified with autism is still lower compared to white or black children.
• Overall, progress has been made toward the Healthy People 2020 goal of increasing
the percentage of children with ASD who receive their first developmental evaluation by
36 months.
• More children who were born in 2012 received an ASD diagnosis by 4 years of age
compared to children born in 2008.
The 2020 Community Report in the United States. While
1 in 54 on Autism highlights the
ADDM Network’s most recent
these findings indicate that
there continue to be many
8-year-old children findings on ASD in 8-year- children living with ASD who
identified with ASD old children, showing that need services and support,
in 2016 the estimated percentage of now and as they grow into
*Based on tracking within 11 communities in children identified with ASD is adolescence and adulthood,
the United States
higher than in previous reports. they also offer good news
In 8-year-old children, about that screening and awareness
1.85%, or 1 in 54, were identified continue to identify children
with ASD in 2016, based on who will benefit from services.
tracking within 11 communities
6EXECUTIVE SUMMARY
• Knowing how many children school systems), researchers, CDC will continue tracking the
have ASD is just part of the and policymakers can use number and characteristics of
picture. While findings also ADDM Network findings to: children with ASD, researching
show that significant progress risk and protective factors
• Support service planning;
has been made in reducing for ASD, and promoting early
racial and ethnic disparities • Inform policies that promote identification—the most
in the identification of ASD in improved outcomes in health powerful tool we have now for
children, CDC and its partners care and education; and making a difference in the lives
continue efforts to: of children with ASD—through
• Guide research on risk CDC’s Learn the Signs. Act
• Ensure that children are and protective factors for Early. program.
evaluated and diagnosed ASD and the interventions
as soon as possible after that can help children with
developmental concerns are ASD succeed.
identified; and
Together, those who work
• Promote efforts for early and with or on behalf of children—
equitable identification of from healthcare providers
ASD and timely enrollment to educators to community
in services. advocates—can ensure that all
children with ASD are identified
Service providers (such as and connected to the services
healthcare organizations and they need as early as possible.
The ADDM Network’s goals are to
Obtain as complete a count as possible (also known as prevalence)
of the number of children with ASD in each ADDM Network area and
identify changes in prevalence over time;
Provide information on the characteristics of children with ASD,
including sex, race/ethnicity, whether or not intellectual disability is
present, and age of evaluation and diagnosis;
Determine whether ASD is more common in some groups of children
than among others (for example, among boys versus girls), and if those
differences are changing over time; and
Understand the impact of ASD and related conditions upon children,
families, and communities in the United States.
7Key Findings from the ADDM Network 8
KEY FINDINGS FROM THE ADDM NETWORK
Key Findings from
the ADDM Network
A Snapshot of Autism Spectrum Disorder in 2016
Data from the Autism and Developmental Disabilities Monitoring
(ADDM) Network help us understand more about the number of children
with autism spectrum disorder (ASD), the characteristics of those children,
and the age at which they are first evaluated and diagnosed. Read on to
learn more about ASD across the ADDM Network.
How many children were
identified with ASD? 1 in 54
About 1 in 54 or 1.85% of 8-year-olds were 8-year-old children were identified with ASD
identified with ASD by the ADDM Network.
in 2016
How did the percentage of children Percentage of children identified
identified with ASD range across with ASD by ADDM Network Site
geographic areas?
The percentage of children identified with ASD
ranged widely across geographic areas from a
low of 1 in 76 or 1.3% in Colorado to a high of
1 in 32 or 3.1% in areas of New Jersey.
OVERALL: 1.85%
9KEY FINDINGS IN THE ADDM NETWORK
Which children were more likely
to be identified with ASD? For every girl identified with ASD,
For every one girl identified with ASD, 4 boys
4 boys were identified
were identified.
For the first time, ADDM Network data found
no overall difference in the number of black
children identified with autism compared White & black children were
to white children. However, the number of 1.2x more likely
Hispanic children identified with autism is still To be identified with ASD than
lower compared to white or black children. Hispanic children
Values indicate prevalence per 1,000 children
When were children evaluated
and diagnosed? More evaluated by 36 months
Findings from the Early ADDM Network* show 4-year-old children with ASD who
that 74% of 4-year-old children with ASD in received evaluation 2016 vs. 2014
2014 received a developmental evaluation by 36
months of age. This increased to 84% of 4-year-
old children with ASD in the 2016 group. 84%
2016
More children who were born in 2012 (1.02%)
74%
received an ASD diagnosis by 4 years of age 2014
compared to children born in 2008 (0.83%).
also appears on 16
What was the intellectual ability of
the children identified with ASD? Approximately 1/3
Among children identified with ASD who Of children with ASD also had
had intelligence quotient (IQ) scores intellectual disability
available, approximately one-third also had
intellectual disability.
*The Early ADDM Network is a subset of sites participating in the
broader ADDM Network that monitors ASD among 4-year-old children.
10A Deeper
Dive
Frequently Asked
Questions About
ADDM Network Data
11A DEEPER DIVE
A Deeper Dive
Frequently Asked Questions
About the ADDM Network Data
STATES WITH ADDM SITES
Surveillance Year 2016
How was this information
collected?
The ADDM Network uses a systematic record
review method. Specifically, the information
reported by the Network is based on the
analysis of data collected from the health and
special education records (if available) of 8-year-
old children who lived in one of 11 different areas
throughout the United States in 2016.
SURVEILLANCE AMONG
Only 8-year-olds
Where was this information
4-year-olds & 8-year-olds
collected? Which children does
it include?
POPULATION BY RACE/ETHNICITY
Tracking area
Total: 275,419 Children 8 years of age Specific areas of Arizona, Arkansas, Colorado,
Georgia, Maryland, Minnesota, Missouri,
New Jersey, North Carolina, Tennessee, and
Wisconsin (see ADDM Network site pages for
more information).
What is the key take-away
message?
There continue to be many children living with
ASD who need services and support, both
51.2% white now and as they grow into adolescence and
21.2% black adulthood. Efforts to ensure that all children
21.4% Hispanic with ASD are evaluated and diagnosed as early
as possible can help them be connected to the
5.5% Asian or Pacific Islander
services they need.A DEEPER DIVE
Why was the percentage of children
identified with ASD higher in some
areas but not in others?
Currently, research does not show that living in
certain communities puts children at greater
risk for developing ASD. These geographic
differences could be related to how the ADDM
Network identifies children—for example, access
to health records alone versus both health and
special education records. It could also be due
to changes in how children are identified and
served in their local communities—for example,
variations across communities in insurance
coverage for ASD services. Continuing to track
ASD over time will help the ADDM Network
monitor future changes.
Why does the ADDM ASD
prevalence estimate differ from
other ASD prevalence estimates?
Estimates from the ADDM Network, the
National Survey of Children’s Health (NSCH),
and the National Health Interview Survey
(NHIS) cannot be directly compared because
they use different methods to collect their
information and look at different age groups.
NSCH and NHIS, based on national surveys
of parental experiences, can provide insight
into how many children have been diagnosed
with ASD and other developmental disabilities.
The ADDM Network further enriches our
understanding of ASD by working with
communities across the United States to
collect information on specific characteristics of
children with ASD and track changes over time
in those communities and within groups with
similar characteristics.
13Data Spotlights 14
DATA SPOTLIGHTS | CLOSING THE RACIAL AND ETHNIC GAP IN THE IDENTIFICATION OF ASD
Spotlight On
Closing the Racial and Ethnic Gap in the
Identification of Autism Spectrum Disorder
For the first time, the Autism and Developmental Disabilities
Monitoring (ADDM) Network data found no overall difference in
the number of black children identified with ASD by 8 years of age
compared to white children, but ethnic disparities remain.
In past reports, the ADDM Differences continue in the age at identification
Network has consistently of ASD among black and Hispanic children
found that more white children
compared to white children.
are identified with autism
spectrum disorder (ASD) than Racial and ethnic differences still
black or Hispanic children. exist in how early ASD is identified
While significant progress through evaluation and diagnosis,
has been made in closing the especially when the child with
gap in the identification of ASD also has intellectual disability.
ASD between populations of Overall, black and Hispanic children
white and black children, the with ASD received evaluations later
number of Hispanic children than white children with ASD.
identified with ASD is still lower
In addition, black and Hispanic
compared to white or black
children with ASD and intellectual disability were diagnosed at a
children. Previous studies have
later age than white children with ASD and intellectual disability.
shown that stigma, lack of
This delay in diagnosis may limit opportunities to receive services
access to healthcare services,
that could improve outcomes and quality of life.
and non-English primary
language are potential barriers
to identification of children
Future directions
with ASD, especially among
Hispanic children. These Racial and ethnic gaps in the identification of ASD are closing,
barriers mean that certain and targeted community outreach and efforts to have all children
groups of children may not be screened for ASD are ongoing. The ADDM Network will continue
getting the services they need to monitor the number and characteristics of children with ASD
to reach their full potential. to find out if these gaps continue to narrow. This information can
More work is needed to improve help states and communities develop and evaluate strategies to
identification of ASD within increase awareness and improve identification of ASD and referral
Hispanic communities. to services in black and Hispanic communities.
15DATA SPOTLIGHTS | PROGRESS IN EVALUATION AND DIAGNOSIS OF AUTISM SPECTRUM DISORDER
Spotlight On
Progress in Evaluation and Diagnosis
of Autism Spectrum Disorder
Monitoring, screening, evaluating, and diagnosing children with
autism spectrum disorder (ASD) as early as possible are important
steps for making sure that children receive the services and
supports they need to reach their full potential. There are several
steps in this process.
Tracking ASD among preschool-aged children
Tracking ASD among preschool-aged children increases our
understanding of the characteristics and early identification of
younger children with ASD. Early identification helps families
get earlier access to services in their communities. The Early
Autism and Developmental Disabilities Monitoring (Early ADDM)
Network collects information about ASD prevalence and early
identification among 4-year-old children in a subset of six
communities from the broader ADDM Network of 11 communities.
The latest report from the Early ADDM Network provides critical
information on progress made toward early identification of
children with ASD and informs providers—particularly public
schools—of future service needs.
More evaluated by
Key findings from the Early ADDM Network
36 months
More children are being evaluated for ASD at an earlier
4-year-old children age than previously reported
with ASD who received
In 2016, a higher percentage (84% compared to 74%) of children
evaluation 2016 vs. 2014
identified with ASD by 4 years of age received their first
developmental evaluation by 36 months compared to those in
2014. In addition, it indicates progress has been made toward
84%
2016 the Healthy People 2020 goal of increasing the percentage
of children with ASD who receive their first developmental
74% evaluation by 36 months.
2014
also appears on 16
16DATA SPOTLIGHTS | PROGRESS IN EVALUATION AND DIAGNOSIS OF AUTISM SPECTRUM DISORDER
More children are being diagnosed with
ASD at an earlier age Comparing children aged 4 and 8 years
More children who were born in 2012 (1.02%) In 2016 shown by age at ASD diagnosis
received an ASD diagnosis by 4 years of age
compared to children born in 2008 (0.83%).
This means more children are being diagnosed
AGE GROUP
with ASD by age 4 now than previously.
4 YEARS
Implications 8 YEARS
These are positive findings because the 95% CI
younger a child is when he or she receives a 4 YEARS
developmental evaluation or ASD diagnosis, 8 YEARS
the sooner the child can begin to receive
needed services.
Steps in the process to diagnose ASD
1. Developmental monitoring (also known as tracking or surveillance) is important for all
children. Caregivers, such as parents, healthcare providers, and early educators, can learn
how to look for developmental milestones—how children grow, move, communicate,
interact, learn, and play. This information helps caregivers know what to expect at different
ages, get ideas on how to promote positive development, and recognize potential concerns
about development as early as possible. Developmental monitoring is an ongoing process,
and CDC’s Learn the Signs. Act Early. program has tools and information to help at www.
cdc.gov/ActEarly.
2. A developmental screen is a short test using a validated screening tool to identify whether
a child is learning basic skills, and it can help determine if there might be a delay. The
American Academy of Pediatrics recommends screening children for ASD at 18 and 24
months of age.
3. A comprehensive developmental evaluation is a thorough review of how a child plays,
learns, communicates, acts, and moves, and whether those characteristics have changed
over time. Various professionals can conduct developmental evaluations, including
teachers, social workers, nurses, psychologists, doctors, and speech-language pathologists.
This evaluation can include clinical observation, parental reports of developmental
and health histories, psychological testing, and speech and language assessments. A
comprehensive developmental evaluation is often a key step in getting services, including
those through the school system.
4. Diagnosis occurs when a developmental pediatrician, child neurologist, child psychiatrist, or
child psychologist uses the results of the comprehensive evaluation to determine whether
a child has ASD. Neurological and genetic testing can often exclude other disorders
and can check for genetic and neurological problems that sometimes occur along with
ASD. A medical diagnosis can be a key step in getting medical services provided through
health insurance.
17ADDM Network Data for Action 18
DATA FOR ACTION
ADDM Network Data for Action
How Can You Use the ADDM Network Findings?
There are many children and families living with ASD across the
United States. The ADDM Network’s information on the number and
characteristics of children with ASD provides data for action. These
findings can be used in local communities and nationwide to advance
initiatives, policies, and research that help children with ASD.
The federal government is using Service providers, such as healthcare
this information to: organizations and school systems,
• Measure progress toward public can use this information to:
health goals. • Promote early identification efforts in
ADDM Network findings are used to measure order to lower the age when children
progress toward the Healthy People 2020 are first evaluated for developmental
goals to increase the proportion of children
concerns, diagnosed with ASD,
with ASD with a first evaluation by 36 months
of age and enrolled in special services by 48 and enrolled in community-based
months of age (1). support systems.
CDC’s Learn the Signs. Act Early. program
• Guide research on ASD. offers free tools, including the Milestone
ADDM Network findings have helped Tracker app, that service providers can promote
inform the Interagency Autism Coordinating among parents to help improve developmental
Committee’s Strategic Plan for ASD research (2). monitoring, a critical step in the early
identification of developmental delays.
• Promote early identification efforts.
ADDM Network findings on average age of • Plan for resource and service needs.
diagnosis of ASD support CDC’s Learn the Signs. • Target their outreach to under-
Act Early. program, which aims to lower the identified groups of children, such as
average age of diagnosis by promoting early
Hispanic children.
childhood developmental monitoring by parents,
childcare providers, and healthcare providers.
19DATA FOR ACTION
Policymakers and community Researchers can use this
leaders can use this information to: information to:
• Promote awareness of ASD and bring • Document the need for accelerated
the community together to address ASD research.
the growing needs of families living • Guide future research projects.
with ASD.
• Examine more closely why and how
• Develop policies and promote early ASD affects children differently by sex,
identification and equal access to race/ethnicity, intellectual ability, and
services and supports so that all community.
children get the help they need.
• Support the creation of ASD
• Serve as the basis for the creation of community research groups in local
a task force or commission focused on communities.
the coordination of ASD activities in
• Develop standard tools for measuring
local communities.
and documenting abilities and
challenges among children with ASD.
20ADDM
Network Site
Snapshots
21ADDM NETWORK SITE SNAPSHOTS | OVERVIEW
ADDM Network Site Snapshots
A Snapshot of Autism Spectrum Disorder in 2016
The Autism and Developmental Disabilities Monitoring (ADDM)
Network tracked ASD at sites within these states in 2016.
SURVEILLANCE AMONG
Only 8-year-olds
4-year-olds & 8-year-olds
Arizona Maryland North Carolina
Sydney Pettygrove, PhD Li-Ching Lee, PhD, ScM Julie Daniels, PhD
Argelia Benavides, MPH Johns Hopkins University University of North Carolina at Chapel Hill
University of Arizona Health Sciences 615 N. Wolfe St., Suite E6032 919-966-7096
Center Baltimore, MD 21205 Julie_Daniels@unc.edu
sydneyp@arizona.edu 410-502-0605
argeliab@email.arizona.edu llee38@jhu.edu Tennessee
Zachary Warren, PhD
Arkansas Minnesota VKC/TRIAD
Allison Hudson Institute on Community Integration (ICI) 110 Magnolia Circle
University of Arkansas for Medical Sciences University of Minnesota Nashville, TN 37203
1 Children’s Way, Slot 512-4 150 Pillsbury Drive SE 1-877-ASD-VUMC
Little Rock, AR 72202 Minneapolis, MN 55455 autismresources@vanderbilt.edu
aehudson@uams.edu https://addm.umn.edu/
https://pediatrics.uams.edu/ar-addm autism@umn.edu Wisconsin
Maureen Durkin, PhD, DrPH
Colorado Missouri University of Wisconsin-Madison
Tiffany C. White, PhD, MSPH Robert Fitzgerald, PhD, MPH Waisman Center
Colorado Department of Public Health and Washington University in St. Louis 1500 Highland Ave, Room s101E
Environment 314-286-0151 608-263-7507
4300 Cherry Creek South Drive fitzgeraldr@wustl.edu mdurkin@wisc.edu
Denver, CO 80228
303-692-2680 New Jersey NOTE: Although these 11 states host the
tiffany.white@state.co.us Walter Zahorodny, PhD ADDM Network Sites, the entire state is not
Rutgers-New Jersey Medical School necessarily included in the tracked area. Please
Georgia 185 South Orange Avenue, F570 see individual ADDM Network site pages for a
maddsp@cdc.gov Newark, New Jersey 07101 closer look at the specific sites.
Centers for Disease Control and Prevention 973-972-9773
National Center on Birth Defects and zahorodn@njms.rutgers.edu
Developmental Disabilities
22ADDM NETWORK SITE SNAPSHOTS | Arizona
A Snapshot of Autism Spectrum Disorder in
Arizona
Findings from the Arizona Developmental
Disabilities Surveillance Program (ADDSP)
help increase understanding about the
number of children with autism spectrum
disorder (ASD), the characteristics of those
children, and the age at which they are first
evaluated and diagnosed. SITE TRACKING AREA
White children were 38% of children
1 in 63 1.5x more likely Identified with ASD
Or 1.6% of 8-year-old To be identified with received a Comprehensive
children in an area of ASD than Hispanic or Developmental Evaluation
Arizona were identified black children by age 3 years
with ASD by ADDSP
in 2016
Values indicate prevalence per 1,000 children
Boys were 4.2x 68% of children
More likely to be identified Identified with ASD had a
OVERALL: 1.85%
with ASD than girls documented ASD diagnosis
IQ data available for 91%
Of children identified with ASD by ADDSP
This percentage is lower than the average IQ SCORE
percentage identified with ASD (1.85%) in 2016
< 70 25% 25%
in all communities in the United States where
CDC tracked ASD in 2016.
45%
had
71 - 85
Intellectual
By 57 months
> 85 Disability
Half of children identified 30%
IQ = Intelligence Quotient
with ASD were diagnosed Intellectual disability = IQ < 70
23ADDM NETWORK SITE SNAPSHOTS | Arizona
What are the key take-away messages? Resources
• More children with average or above-average intelligence are being identified with
ASD since ADDSP began tracking in 2000.
ARIZONA AUTISM COALITION
• White children were more likely to be identified with ASD than black or Hispanic
www.azautism.org
children. This may reflect cultural or socioeconomic and/or differences in access to
diagnostic and therapeutic services.
ARIZONA EARLY
• Although Hispanic children are less likely to be identified with ASD compared to non-
INTERVENTION PROGRAM
Hispanic children in Arizona, this difference has been decreasing over the years.
602-542-4446
• Differences between the percentage of boys and girls identified with ASD continue;
https://des.az.gov/services/
a better understanding of sex differences may also lead to the development of more
disabilities/developmental-infant
effective screening tools for ASD in boys and girls.
AZ FIND
How can this information be useful? 800-352-4558
ADDSP’s latest findings can be used to: www.azed.gov/special-education/
• Promote early identification of ASD; az-find/
• Plan for the service needs of individuals with ASD and provide trainings related to
ASD for healthcare providers and families; AZA UNITED
• Guide ASD research; 602-773-5773
• Inform policies that promote improved outcomes in health care and education for www.azaunited.org/
individuals with ASD;
• Identify cultural, educational, and economic barriers to decreasing the age of CDC’S LEARN THE SIGNS.
evaluation and diagnosis; ACT EARLY.
• Improve screening tools to increase accuracy of the screening test result for ASD; Megan Wills
• Improve collaborations across the ASD community among providers, researchers, and Arizona’s Act Early Ambassador
families; and Mwills@blake.easterseals.com
• Increase awareness of associated behavioral, cognitive, and/or physical features in
children with autism. RAISING SPECIAL KIDS
602-242-4366
Where was this information collected? www.raisingspecialkids.org/
Information was collected from health and education records of children who were 8
years old and living in part of Maricopa County in metropolitan Phoenix in 2016. SOUTHWEST AUTISM
RESEARCH AND RESOURCE
8-year-old children in tracking area: 17,656
• 45% white
CENTER (SARRC)
602-340-8717
• 7% black
www.autismcenter.org
• 41% Hispanic
• 4% Asian or Pacific Islander
AUTISM SOCIETY OF
• 3% other
SOUTHERN ARIZONA
520-770-1541
What else does ADDSP do? info@as-az.org
ADDSP collaborates with the Arizona Department of Health Services and investigators
from the University of Arizona to track the percentage and characteristics of 4-year-olds CONNECT WITH ADDSP
and 8-year-olds with ASD and/or intellectual disability. ADDSP also provides extensive Sydney Pettygrove, PhD
ASD- and developmental disabilities-related outreach and training of students, parents, Argelia Benavides, MPH
educators, and clinicians. Further, ADDSP data help guide ASD research in the public University of Arizona Health
health community. Sciences Center
sydneyp@arizona.edu
argeliab@email.arizona.edu
“CDC’s ADDM Network provides a crucial understanding of the characteristics
about the growing number of individuals identified with ASD in multiple areas
of the United States. The information obtained by the Network has provided
the data necessary to create collaborations with different providers who
address the needs of the autism community across their lifespan.”
JENNIFER ANDREWS, PhD, University of Arizona
24ADDM NETWORK SITE SNAPSHOTS | Arkansas
A Snapshot of Autism Spectrum Disorder in
Arkansas
Findings from the Arkansas Autism and
Developmental Disabilities Monitoring (AR-
ADDM) Program help increase understanding
about the number of children with autism
spectrum disorder (ASD), the characteristics
of those children, and the age at which they
are first evaluated and diagnosed. SITE TRACKING AREA
White children were 33% of children
1 in 66 1.4x more likely Identified with ASD
Or 1.5% of 8-year-old To be identified with ASD received a Comprehensive
children in Arkansas were than black children Developmental Evaluation
identified with ASD by by age 3 years
AR-ADDM in 2016
White children were
1.7x more likely
To be identified with ASD
than Hispanic children 81% of children
OVERALL: 1.85% Identified with ASD had a
documented ASD diagnosis
Arkansas is 1 of 2 sites Where white children
were still more likely to be identified with ASD
than black children.
Values indicate prevalence per 1,000 children
IQ data available for 96%
Of children identified with ASD by AR-ADDM
This percentage is lower than the average
percentage identified with ASD (1.85%) in 2016 IQ SCORE*
in all communities in the United States where
CDC tracked ASD in 2016. < 70 38%
71 - 85 38% 38%
had
Intellectual
By 56 months > 85
Disability
Half of children identified
with ASD were diagnosed IQ = Intelligence Quotient
Intellectual disability = IQ < 70 23%
*Percentages may not total 100
due to rounding
25ADDM NETWORK SITE SNAPSHOTS | Arkansas
What are the key take-away messages? Resources
• Many children and families are living with ASD and need services and
support, now and as they grow into adolescence and adulthood.
• In Arkansas, white children remain more likely to be identified with ASD than FIRST CONNECTIONS
black or Hispanic children. Services for children under the age of 3 years
• Enhanced efforts are needed for early and equitable identification of ASD with developmental delays or disabilities
and timely enrollment in services. 1-800-643-8258
https://dhs.arkansas.gov/dds/
firstconnectionsweb/#fc-home
How can this information be useful? https://humanservices.arkansas.gov/about-
AR-ADDM’s latest findings can be used to:
dhs/ddds/autism
• Promote early identification of ASD;
• Plan for the service needs of individuals with ASD and provide trainings DEPARTMENT OF EDUCATION’S
related to ASD for healthcare providers and families;
SPECIAL EDUCATION UNIT
• Guide future ASD research; and
Special education services for school-aged
• Inform policies promoting improved outcomes in health care and education
children with disabilities (ages 3 to 21 years)
for individuals with ASD.
1-800-482-8437
Stakeholders in Arkansas might consider different ways to increase awareness www.arkansased.gov/divisions/learning-
of ASD among black and Hispanic families and identify and address barriers to services/special-education
evaluation and diagnosis in order to decrease the age at which all children are
evaluated and diagnosed. ARKANSAS AUTISM RESOURCE AND
OUTREACH CENTER
How and where was this information collected? Support, education, and advocacy for families
AR-ADDM uses a record review method. Data were collected and analyzed from of individuals with ASD
the health and special education records of children who were 8 years old and 1-800-342-2923 | aaroc.org
living in any of the 75 counties in Arkansas in 2016.
DENNIS DEVELOPMENTAL
8-year-old children in tracking area: 40,225
CENTER (DDC) AND SCHMIEDING
• 64% white
DEVELOPMENT CENTER (SDC)
• 20% black
Diagnostic multidisciplinary team evaluations
• 13% Hispanic
for children presenting with developmental and
• 2% Asian or Pacific Islander
behavioral concerns (birth to 21 years of age)
• 1% other
DDC: 501-364-1830 | SDC: 479-750-0125
https://pediatrics.uams.edu/clinical-
What is AR-ADDM doing currently? programs-affiliates/
AR-ADDM collaborates with the Arkansas Department of Education, Arkansas
Department of Health, and investigators from the University of Arkansas CDC’S LEARN THE SIGNS. ACT EARLY.
for Medical Services (UAMS) to continue tracking the percentage and Alan Mease, Arkansas’ Act Early Ambassador
characteristics of children with ASD. AR-ADDM recently added 4-year-olds and amease@eqhs.org | www.cdc.gov/actearly
16-year-olds to the tracking of 8-year-olds. In addition, AR-ADDM partners with
UAMS’ Department of Pediatrics and Arkansas Children’s Hospital to provide PROJECT CONNECT RESOURCE GUIDE
training to physicians and staff using AR-ADDM’s individualized presentations Arkansas resources for families and
on the number and characteristics of children with ASD. AR-ADDM also professionals on child development and what
cosponsors educational events for families and educators and collaborates on to do if there is a concern
developmental disabilities awareness events. Visit https://pediatrics.uams.edu/ http://www.adcpti.org/Assets/
ar-addm for more information. projectconnect_resourceguide_smallsize.pdf
SPOTTING AUTISM IN EARLY CHILD
“The work of AR-ADDM has been very valuable to me in my role as a local
CARE SETTINGS
special education director for three rural school districts in Van Buren County. Training for childcare providers on identifying
Prevalence of autism in schools has skyrocketed, growing so quickly that children at risk for being diagnosed with autism
it makes it difficult to keep adequate resources and supports in place for http://www.healthychildcarear.org/
students, staff members, and families. When I examine our data, I find that
autism is no longer a low incidence disability in my three districts, and it COMMUNITY-BASED AUTISM LIAISON
requires that I be diligent in supporting staff with resources and supports. AND TREATMENT (COBALT) PROJECT
The work of AR-ADDM has allowed us to look at real data that have meaning Comprehensive diagnostic assessments, early
around the prevalence of autism in our state. I have used the data over the intervention services, and family support
years when I do presentations locally and at the state level. I hope that work https://cobaltar.org/
continues- it is so very important!”
CONNECT WITH AR-ADDM
Allison Hudson
DEB SWINK , Special Education Director Clinton, Shirley, and South
University of Arkansas for Medical Sciences
Side School Districts 1 Children’s Way, Slot 512-4, Little Rock, AR 72202
aehudson@uams.edu
https://pediatrics.uams.edu/ar-addm
26ADDM NETWORK SITE SNAPSHOTS | Colorado
A Snapshot of Autism Spectrum Disorder in
Colorado
Findings from the Colorado Autism and
Developmental Disabilities Monitoring (CO-
ADDM) Project help increase understanding
about the number of children with autism
spectrum disorder (ASD), the characteristics
of those children, and the age at which they
are first evaluated and diagnosed. SITE TRACKING AREA
White children and black 48% of children
1 in 76 children were 1.3 times Identified with ASD
Or 1.3% of 8-year-old and 1.5 times more likely,
received a Comprehensive
children in an area of Respectively, to be Developmental Evaluation
Colorado were identified identified with ASD than by age 3 years
with ASD by the CO- Hispanic children
ADDM Project in 2016
Values indicate prevalence per 1,000 children.
No significant differences in ASD prevalence 67% of children
were found between white and black children.
OVERALL: 1.85%
Identified with ASD had a
By 48.5 months documented ASD diagnosis
Half of children identified
with ASD were diagnosed
IQ data available for 76%
This percentage is lower than the average
Of children identified with ASD by the CO-ADDM Project
percentage identified with ASD (1.85%) in all
communities in the United States where CDC
tracked ASD in 2016. IQ SCORE
< 70
32%
32%
had
Boys were 4.5x 71 - 85 46%
Intellectual
More likely to be identified > 85 Disability
with ASD than girls
22%
IQ = Intelligence Quotient
Intellectual disability = IQ < 70
27ADDM NETWORK SITE SNAPSHOTS | Colorado
What are the key take-away messages? Resources
• Many children are living with ASD, and they need services and support, now and as
they grow into adolescence and adulthood.
AUTISM SOCIETY OF
• Hispanic children are less likely to be identified with ASD than white or black children.
Research does not show that being Hispanic makes a child less likely to develop COLORADO
ASD. This difference in identification may reflect cultural and/or socioeconomic Information and support for families/
differences, such as delayed or lack of access to services, as compared to other groups providers
in Colorado. 720-214-0794
• Evaluating and diagnosing all children with ASD as early as possible can help them www.autismcolorado.org
be connected to the services they need.
COLORADO SITES OF AUTISM
TREATMENT NETWORK
How can this information be useful? Services for children with ASD
The CO-ADDM Project’s latest findings can be used to:
www.jfkpartners.org
• Promote early identification of ASD;
www.childrenscolorado.org
• Plan for the service needs of individuals with ASD and provide trainings related to
ASD for healthcare providers and families; DEPARTMENT OF
• Guide future ASD research; and
EDUCATION’S OFFICE OF
• Inform policies promoting improved outcomes in health care and education for
SPECIAL EDUCATION
individuals with ASD.
Special education services for school-
Stakeholders in Colorado might consider different ways to: aged children with disabilities
• Lower the age of first evaluation by community providers; and www.cde.state.co.us/cdesped
• Increase awareness of ASD among Hispanic families and identify and address Brooke Carson, Autism Specialist
barriers to evaluation and diagnosis in order to decrease the age at which Hispanic 303-866-6691
children are evaluated and diagnosed. carson_b@cde.state.co.us
How and where was this information collected? EARLY INTERVENTION
The CO-ADDM Project uses a record review method. Specifically, this information is based COLORADO
on the analysis of data collected from the health and some special education records of Services for children under the age of
children who were 8 years old and living in one of seven counties in Colorado in 2016. 3 years with developmental delays or
disabilities
Tracking area
1-888-777-4041
Adams, Arapahoe, Boulder, Broomfield, Denver, Douglas, and Jefferson counties
www.eicolorado.org/
8-year-old children in tracking area: 40,874
• 54% white FAMILY VOICES COLORADO
• 7% black Support for parents of children with
• 34% Hispanic special needs
• 5% Asian or Pacific Islander 800-881-8272
www.familyvoicesco.org
What else does CO-ADDM do besides tracking ASD among LEARN THE SIGNS.
ACT EARLY.
8-year-olds? Resources for families and
The CO-ADDM Project collaborates with the Colorado Department of Public Health and
professionals on child development
Environment and JFK Partners at the University of Colorado-Denver to track the number
and what to do if there is a concern
and characteristics of 4-year-olds with ASD.
Eileen Auer Bennet
Colorado’s Act Early Ambassador
eileen@coloradoabcd.org
THE ARC OF COLORADO
Support and advocacy for individuals
with disabilities and their families
303-864-9334
www.thearcofco.org
CONNECT WITH CO-ADDM
Tiffany C. White, PhD, MSPH
Colorado Department of Public
Health and Environment
4300 Cherry Creek South Drive
Denver, CO 80228
303-692-2680
tiffany.white@state.co.us
28ADDM NETWORK SITE SNAPSHOTS | Georgia
A Snapshot of Autism Spectrum Disorder in
Georgia
Findings from the Metropolitan Atlanta
Developmental Disabilities Surveillance
Program (MADDSP) help increase
understanding about the number of children
with autism spectrum disorder (ASD), the
characteristics of those children, and the age at
which they are first evaluated and diagnosed. SITE TRACKING AREA
White and black children 37% of children
1 in 53 were nearly 2x as likely Identified with ASD
Or 1.9% of 8-year-old To be identified with ASD received a Comprehensive
children in metropolitan than Hispanic children Developmental Evaluation
Atlanta were identified by age 3 years
with ASD by MADDSP 19.7
in 2016 18.9
11.3
Values indicate prevalence per 1,000 children.
No significant differences in ASD prevalence
were found between white and black children. 67% of children
OVERALL: 1.85%
Identified with ASD had a
By 55 months documented ASD diagnosis
Half of children identified
with ASD were diagnosed
IQ data available for 84%
Of children identified with ASD by MADDSP
This percentage is about the same as the av-
erage percentage identified with ASD (1.85%)
in all communities in the United States where IQ SCORE
CDC tracked ASD in 2016.
< 70
42%
37% had
Boys were 4x 71 - 85 42%
Intellectual
More likely to be identified > 85 Disability
with ASD than girls
IQ = Intelligence Quotient 21%
Intellectual disability = IQ < 70
29ADDM NETWORK SITE SNAPSHOTS | Georgia
What are the key take-away messages? Resources
• Many children are living with ASD, and they need services and support, now and as
they grow into adolescence and adulthood.
ATLANTA AUTISM
• While the proportion of black and white children identified with ASD is about the
same, Hispanic children are less likely to be identified with ASD. This may reflect CONSORTIUM
cultural and/or socioeconomic differences, such as language barriers, and delayed or Support for collaboration among
lack of access to services. families, researchers, clinicians,
• Efforts may be directed toward evaluating and diagnosing all children with ASD as educators, and advocates
early as possible so that they can be connected to the services they need. www.atlantaautismconsortium.org/
AUTISM SOCIETY
How can this information be useful? OF GEORGIA
MADDSP’s latest findings can be used to:
Information and support for
• Promote early identification of ASD;
families/providers
• Plan for the service needs of individuals with ASD and provide trainings related to
1-844-404-ASGa
ASD for healthcare providers and families;
www.autismsocietyga.org
• Guide future ASD research; and
• Inform policies promoting improved outcomes in health care and education for AUTISM SPEAKS
individuals with ASD. Information and resources for families
770-451-0570
Stakeholders in Georgia might consider different ways to: www.autismspeaks.org/georgia-0
• Lower the age of first evaluation by community providers; and
• Increase awareness of ASD among Hispanic families and identify and address BABIES CAN’T WAIT
barriers to evaluation and diagnosis in order to decrease the age at which all children Services for children under the age of
are evaluated and diagnosed. 3 years with developmental delays or
disabilities
How and where was this information collected? 1-888-777-4041
MADDSP uses a record review method. Specifically, this information is based on the dph.georgia.gov/Babies-Cant-Wait
analysis of data collected from the health and special education records of children who
were 8 years old and living in one of two counties in Georgia in 2016. DEPARTMENT OF
Tracking area EDUCATION’S SPECIAL
DeKalb and Gwinnett counties EDUCATION SERVICES AND
SUPPORTS
8-year-old children in tracking area: 24,113
Special education services for school-
• 27% white
aged children with disabilities
• 41% black
404-656-3963
• 24% Hispanic
www.gadoe.org/Curriculum-
• 8% Asian or Pacific Islander
Instruction-and-Assessment/Special-
Education-Services/Pages/default.aspx
What else does MADDSP do besides provide estimates of ASD
among 8-year-old children? PARENT TO PARENT
MADDSP is a program administered by the Centers for Disease Control and Prevention OF GEORGIA
(CDC). MADDSP collaborates with health and education systems that serve children Support for parents of children with
with developmental disabilities and their families to understand the number and special needs
characteristics of 8-year-olds with ASD, intellectual disability, and cerebral palsy in 1-800-229-2038
select areas of Georgia. Upon request, MADDSP offers workshops and trainings for local p2pga.org
professionals and provides tailored data reports and presentations.
CDC’S LEARN THE SIGNS.
ACT EARLY.
“CDC’s ADDM Network has consistently generated critically important Resources for families and
information not only on how common ASD is but also on a range of prevailing professionals on child development
challenges affecting the population at large, in Georgia and in the country. and what to do if there is a concern
Thanks to this information, national priorities were established to reduce the www.cdc.gov/ActEarly
age of diagnosis, to address unacceptable healthcare disparities across sectors
CONNECT WITH MADDSP
of our community, and to build a concerted effort to afford all children with
maddsp@cdc.gov
ASD, irrespective of the race, ethnicity or level of income of their families, with Centers for Disease Control and
what they need in order to fulfill their promise.” Prevention
National Center on Birth Defects
AMI KLIN, PhD,Director, Marcus Autism Center, Emory University School and Developmental Disabilities
of Medicine, and Children’s Healthcare of Atlanta
30ADDM NETWORK SITE SNAPSHOTS | Maryland
A Snapshot of Autism Spectrum Disorder in
Maryland
Findings from the Maryland Autism and
Developmental Disabilities Monitoring (MD-
ADDM) Project help increase understanding
about the number of children with autism
spectrum disorder (ASD), the characteristics
of those children, and the age at which they
are first evaluated and diagnosed. SITE TRACKING AREA
No significant 48% of children
1 in 52 differences Identified with ASD
Or 1.9% of 8-year-old in ASD prevalence received a Comprehensive
children in an area of Were found among Developmental Evaluation
Maryland were identified white, black, and by age 3 years
with ASD by the MD- Hispanic children
ADDM Project in 2016
Boys were 3.9x
More likely to be identified 78% of children
with ASD than girls Identified with ASD had a
OVERALL: 1.85% documented ASD diagnosis
IQ data available for 65%
Of children identified with ASD by the MD-ADDM Project
This percentage is about the same as the av- IQ SCORE
erage percentage identified with ASD (1.85%)
< 70
35%
in all communities in the United States where
CDC tracked ASD in 2016. 39%
35% had
71 - 85
Intellectual
By 47.5 months
> 85 Disability
Half of children identified 26%
IQ = Intelligence Quotient
with ASD were diagnosed Intellectual disability = IQ < 70
31ADDM NETWORK SITE SNAPSHOTS | Maryland
What are the key take-away messages? Resources
• Many children with ASD need services and support, now and as they grow into
adolescence and adulthood.
PATHFINDERS FOR AUTISM
• ASD can be diagnosed as young as 18 months of age.
www.pathfindersforautism.org
• Efforts may be directed toward evaluating and diagnosing all children with ASD as
early as possible so that they can be connected to the services they need.
CENTER FOR AUTISM AND
RELATED DISORDERS
How can this information be useful? AT KENNEDY KRIEGER
Stakeholders in Maryland might consider different ways to lower the age of first
INSTITUTE
evaluation by community providers.
www.card.kennedykrieger.org
Where was this information collected? THE PARENT’S PLACE
The MD-ADDM Project information is based on the analysis of data collected from OF MARYLAND
the health and special education records of children who were 8 years old and living in https://www.ppmd.org/
Baltimore County in 2016.
8-year-old children in tracking area: 9,993 DEPARTMENT OF
• 48% white EDUCATION’S DIVISION
• 35% black OF SPECIAL EDUCATION
• 9% Hispanic AND EARLY INTERVENTION
• 7% Asian or Pacific Islander SERVICES
• 1% other http://marylandpublicschools.
org/programs/Pages/Special-
What is MD-ADDM doing currently? Education/index.aspx
The MD-ADDM Project collaborates with the Maryland Department of Health and
ITINERIS
investigators from Johns Hopkins University, as well as partners with the Maryland State
https://www.itinerisbaltimore.org/
Department of Education and the Kennedy Krieger Institute, to track the number and
characteristics of 8-year-olds with ASD and/or intellectual disability in Baltimore County,
AUTISM SOCIETY OF
Maryland. The MD-ADDM Project offers presentations on the number and characteristics
BALTIMORE-CHESAPEAKE
of children with ASD in Maryland and across the ADDM Network for stakeholders, state
www.baltimoreautismsociety.org
and local agencies, partnering institutes, and parent groups. The MD-ADDM Project also
participates in and organizes annual autism awareness month events in the community.
COMMUNITY SERVICES
FOR AUTISTIC ADULTS AND
“MD-ADDM Project data help us plan person-centered services for individuals CHILDREN (CSAAC)
with autism so they can achieve their fullest potential. We appreciate having http://csaac.org/
an ADDM site in Maryland to inform us of the number and characteristics of
CDC’S LEARN THE SIGNS.
individuals with autism in the community that we serve.”
ACT EARLY.
ERIC SALZANO, Executive Director, Community Services for Autistic Adults www.cdc.gov/actearly
and Children Inc. (CSAAC) CONNECT WITH MD-ADDM
Li-Ching Lee, PhD, ScM
Johns Hopkins University
615 N. Wolfe St., Suite E6032
Baltimore, MD 21205
410-502-0605
llee38@jhu.edu
32ADDM NETWORK SITE SNAPSHOTS | Minnesota
A Snapshot of Autism Spectrum Disorder in
Minnesota
Findings from the Minnesota Autism and
Developmental Disabilities Monitoring Network
(MN-ADDM) help increase understanding
about the number of children with autism
spectrum disorder (ASD), the characteristics of
those children, and the age at which they are
first evaluated and diagnosed. SITE TRACKING AREA
No significant 39% of children
1 in 44 differences Identified with ASD
Or 2.3% of 8-year-old In ASD prevalence received a Comprehensive
children in an area of Were found among Developmental Evaluation
Minnesota were identified white, black, and by age 3 years
with ASD by MN-ADDM Hispanic children
in 2016
Boys were 3.9x
More likely to be identified 54% of children
with ASD than girls Identified with ASD had a
OVERALL: 1.85%
documented ASD diagnosis
IQ data available for 90%
Of children identified with ASD by MN-ADDM
IQ SCORE*
This is higher than the average percentage
identified with ASD in 2016 (1.85%) in all < 70 25% 25%
communities in the United States where CDC
tracked ASD data in 2016. 71 - 85 had
54% Intellectual
> 85
By 56 months Disability
20%
Half of children identified IQ = Intelligence Quotient
Intellectual disability = IQ < 70
with ASD were diagnosed *Percentages may not total 100
due to rounding
33ADDM NETWORK SITE SNAPSHOTS | Minnesota
What are the key take-away messages? Resources
• Minnesota identified the third highest prevalence of ASD in the ADDM Network.
• In Minnesota, there were differences between percentage of boys and girls identified,
HELP ME GROW
with more boys being identified than girls. This is consistent with previous estimates
1-866-693-GROW (4769)
and other states in the ADDM Network.
www.helpmegrowmn.org
• MN-ADDM findings also reveal no differences in ASD prevalence across racial and
ethnic groups in Minnesota. The small number of children in some of these groups MDE.ECSE@state.mn.us
makes it difficult to determine whether ASD prevalence is truly different across
MINNESOTA AUTISM PORTAL
groups. MN-ADDM will continue to track ASD prevalence and use this information to
www.mn.gov/autism/
address health difference between groups in Minnesota.
• Although ASD can be diagnosed as young as 18 months of age, MN-ADDM is
MINNESOTA DEPARTMENT
identifying children with ASD at much later ages. MN-ADDM will continue to
OF EDUCATION
work with the community to promote regular developmental screening and early
https://education.mn.gov/MDE/dse/
identification.
sped/cat/aut/
How can this information be useful? AUTISM SOCIETY OF
MN-ADDM’s findings can be used to: MINNESOTA
• Promote early identification of ASD; www.ausm.org/
• Plan for the service needs of individuals with ASD and provide trainings related to
ASD for healthcare providers and families; CDC’S LEARN THE SIGNS.
• Guide future ASD research; and ACT EARLY. PROJECT-MN
• Inform policies promoting improved outcomes for people with ASD. https://addm.umn.edu/ltsae
How and where was this information collected? UNIVERSITY OF MN AUTISM
MN-ADDM information is based on the analysis of data collected from the health and AND NEURODEVELOPMENT
special education records of children who were 8 years old and living in parts of two (VOYAGER) CLINIC
counties in 2016. 612‑365‑8400
Tracking area https://www.mhealth.org/childrens/
Parts of Ramsey and Hennepin counties, including Minneapolis-St. Paul locations/buildings/2512-building/
pediatric-specialty-care-voyager-clinic
8-year-old children in tracking area: 13,728
• 42 % white CONNECT WITH MN-
• 27% black
ADDM PROJECT
• 15% Hispanic
Institute on Community
• 15% Asian or Pacific Islander
Integration (ICI) University of
• 1% other
Minnesota
150 Pillsbury Drive SE
Minneapolis, MN 55455
https://addm.umn.edu/
autism@umn.edu
34ADDM NETWORK SITE SNAPSHOTS | Missouri
A Snapshot of Autism Spectrum Disorder in
Missouri
Findings from the Missouri Autism and
Developmental Disabilities Monitoring (MO-
ADDM) Project help increase understanding
about the number of children with autism
spectrum disorder (ASD), the characteristics of
those children, and the age at which they are
first evaluated and diagnosed.
SITE TRACKING AREA
White children were 40% of children
1 in 74 more likely Identified with ASD
Or 1.4% of 8-year-old To be identified with ASD received a Comprehensive
children in St. Louis and St. than Hispanic children Developmental Evaluation
Louis City counties were by age 3 years
identified with ASD by the
MO-ADDM Project in 2016
No significant differences
In ASD prevalence were
found between white and
black children
OVERALL: 1.85%
91% of children
Identified with ASD had a
By 56 months documented ASD diagnosis
Half of children identified
with ASD were diagnosed
This percentage is lower than the average
percentage identified with ASD (1.85%) in all Boys were 3x
communities in the United States where CDC
tracked ASD in 2016. More likely to be identified with ASD than girls
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