2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC

 
2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC
on

                   2020

AUTISM AND DEVELOPMENTAL DISABILITIES
     MONITORING (ADDM) NETWORK
2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC
2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC
on

                                                                       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.

                                                                                                                                     3
2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC
2020 AUTISM ND DEVELOPMENTAL DISABILITIES MONITO ING (ADDM) NETWORK - on - CDC
TABLE 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

                                                                                                                                        5
EXECUTIVE 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

6
EXECUTIVE 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.

                                                                                                      7
Key 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%

                                                                                            9
KEY 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.

10
A Deeper
Dive
Frequently Asked
Questions About
ADDM Network Data
                    11
A 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.

                                                               13
Data
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.

                                                                                                      15
DATA 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

16
DATA 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.

                                                                                                     17
ADDM 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.

                                                                                                  19
DATA 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.

20
ADDM
Network Site
Snapshots
           21
ADDM 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

22
ADDM 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

                                                                                                                           23
ADDM 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

24
ADDM 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

                                                                                                                                25
ADDM 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

26
ADDM 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

                                                                                                                           27
ADDM 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

28
ADDM 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

                                                                                                                             29
ADDM 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

30
ADDM 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

                                                                                                                         31
ADDM 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

32
ADDM 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

                                                                                                                      33
ADDM 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

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ADDM 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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