CDC Webinar with Autism NOW April 17, 2012

From Numbers to Action: Understanding the

New Autism Prevalence Estimates & How YOU

Can Help Families Take Action

Presenters: Jon Baio and Katie Green, CDC

Autism Spectrum Disorders:

Findings from CDC’s Most Recent Prevalence Report

Autism and Developmental Disabilities Monitoring (ADDM) Network

14 Sites, United States, 2008

National Center on Birth Defects and Developmental Disabilities

Division of Birth Defects and Developmental Disabilities

Presented for the ADDM Network by Jon Baio, Ed.S.

Background

• Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior

• Challenges in tracking the prevalence of ASDs include:

– Complex nature of the disorders

– Lack of biologic markers for diagnosis

– Changes in diagnostic practices over time

CDC’s Autism Public Health Actions

• Surveillance:

– Autism and Developmental Disabilities Monitoring (ADDM) Network

• Document and understand changes in identified prevalence over time

• Expand monitoring to include younger populations

• Research:

– Study to Explore Early Development (SEED)

• Identify factors that may put children at risk for ASDs

• Awareness:

– Learn the Signs. Act Early.

• Improve early identification of developmental delays and ASDs

• Collaboration:

– Interagency Autism Coordinating Committee (IACC)

• Public/Private coordination of research efforts to address ASDs

ADDM Network Methods

Screening and abstraction of records at multiple data

sources in community

All abstracted evaluations reviewed by trained

clinicians to determine ASD case status

• Multisite, multisource, records-based surveillance methodology

ADDM Network ASD Prevalence Reports

• 2007: First reports in MMWR SS representing 2000 & 2002 surveillance years

– 1 in 150 8-year-old children in these communities identified with ASD

• 2009: Second reports in MMWR SS representing 2004 & 2006 surveillance years

– 1 in 110 8-year-old children in these communities identified with ASD

– Autism prevalence increased 57% between 2002 and 2006

• Current ADDM Network report provides:

– 14 areas in U.S.

– ASD prevalence estimates for the 2008 surveillance year

– Characteristics of children identified with autism spectrum disorders

– Comparisons to earlier ADDM surveillance years (2002 & 2006)

http://www.cdc.gov/mmwr

ADDM Network 2000-2008 Identified Prevalence of ASDs

Combining Data from All Sites

Surveillance Year

Birth Year Number of ADDM Sites Reporting

8-year-old Population

Number of children identified

with ASDs

Prevalence per 1,000 Children

(Range)

2000 1992 6 187,761 1,252 6.7

(4.5-9.9)

2002 1994 14 407,578 2,685 6.6

(3.3-10.6)

2004 1996 8 172,335 1,376 8.0

(4.6-9.8)

2006 1998 11 308,038 2,757 9.0

(4.2-12.1)

2008 2000 14 337,093 3,820 11.3

(4.8-21.2)

Change in Identified ASD Prevalence Among ADDM Sites

0

5

10

15

20

25

Iden

tifi

ed A

SD P

reva

len

ce p

er 1

,00

0 2002 2006 2008

Change in Identified ASD Prevalence by Sex (*Percent change in 13 sites completing both 2002 & 2008 surveillance years)

0

2

4

6

8

10

12

14

16

18

20

2002 2004 2006 2008

Iden

tifi

ed A

SD P

reva

len

ce p

er 1

,00

0

Surveillance Year

Both Sexes

Male

Female

*82%

*78%

*63%

Change in Identified ASD Prevalence by Race/Ethnicity (*Percent change in 13 sites completing both 2002 & 2008 surveillance years)

0

2

4

6

8

10

12

14

2002 2004 2006 2008

Iden

tifi

ed A

SD P

reva

len

ce p

er 1

,00

0

Surveillance Year

All Race/Ethnicity

White

Black

Hispanic

*78%

*91%

*110%

*70%

Change in Identified ASD Prevalence by Intellectual Ability⁺ (*Percent change in 7 sites⁺ completing both 2002 & 2008 surveillance years)

0

1

2

3

4

5

2002 2004 2006 2008

Iden

tifi

ed A

SD P

reva

len

ce p

er 1

,00

0

Surveillance Year

IQ ≤ 70

IQ = 71-85

IQ > 85

*107%

*44%

*96%

⁺Includes sites having information on intellectual ability available for at least 70% of children who met the ASD case definition

Iden

tifi

ed A

SD P

reva

len

ce p

er 1

,00

0

Variation across Sites in Identified Prevalence of ASDs ADDM Network, 14 Sites, 2008

0

5

10

15

20

25

30

Prevalence for All Sites Combined

Health-Only Records Access

Education & Health Records Access

Change in Proportion of Children with Previously Documented ASD Classification

(Combining data from 10 sites completing 2002, 2006 and 2008 surveillance years)

Surveillance Year

2002 2006 2008

% with Previously Documented ASD

Classification 72% 77% 79%

• Proportion of children meeting the ASD surveillance case definition with a documented ASD classification in their records increased over time in 7 of 10 sites completing all three surveillance years

Earliest Known ASD Diagnosis Median Age and Proportion by Diagnostic Subtype

ADDM Network, 2008

(Combining data from 14 sites completing 2008 surveillance year)

Subtype of Earliest Diagnosis: Autistic Disorder

ASD/PDD Asperger Disorder

Distribution of Subtypes: 44% 47% 9%

Median Age of Earliest Diagnosis: 48 Months 53 Months 75 Months

Limitations: 1) Diagnostic information obtained from evaluation records may not

capture the exact age of each child’s earliest diagnosis 2) Instability of diagnostic subtypes over time

Summary of Findings

• Identified prevalence of ASDs continues to rise in most ADDM Network communities

• Combining data from all sites:

– 1 in 88 eight-year-old children identified with ASD

• 23% increase, 2006-2008

• 78% increase, 2002-2008

– Rate of increase higher among Hispanic children, black children, and children without intellectual disability

• Identified prevalence of ASDs varies widely

– Across sites

– By sex

– By race/ethnicity

Implications of ADDM Network Findings

• ASDs continue to be an important public health concern

– Estimate over 1 million children with ASDs in the United States

• Better identification among certain subgroups

– Still concerned about disparities in identified prevalence

• Across sites (methodologic: access to records / geographic: access to care)

• Among children of minority race/ethnicity, low socioeconomic status

• More children than ever are being recognized as having ASDs

– Still concerned that 20% are not classified with autism by community providers, others are not recognized as early as they can be

• Continue ongoing surveillance to evaluate temporal trends

• Investigator-initiated analyses

– Timing and stability of diagnosis – Socioeconomic disparities – Intellectual functioning – Geospatial analyses – Birth characteristics

• Parental age • Multiple births • Gestational age and birthweight

Moving Forward

http://www.cdc.gov/Features/

CountingAutism/

http://www.cdc.gov/Features/CountingAutism/



ADDM Network SY2008 Investigators and Coordinators Martha Wingate, DrPH, Beverly Mulvihill, PhD, University of Alabama at Birmingham;

Russell S. Kirby, PhD, University of South Florida, Tampa; Sydney Pettygrove, PhD,

Chris Cunniff, MD, F. John Meaney, PhD, University of Arizona, Tucson; Eldon

Schulz, MD, University of Arkansas for Medical Sciences, Little Rock; Lisa Miller,

MD, Colorado Department of Public Health and Environment, Denver; Cordelia

Robinson, PhD, University of Colorado at Denver and Health Sciences Center; Gina

Quintana, Colorado Department of Education, Denver; Marygrace Yale Kaiser, PhD,

University of Miami, Coral Gables, Florida; Li-Ching Lee, PhD, Johns Hopkins

University, Rebecca Landa, PhD, Kennedy Krieger Institute, Baltimore, Maryland;

Craig Newschaffer, PhD, Drexel University, Philadelphia, Pennsylvania; John

Constantino, MD, Robert Fitzgerald, MPH, Washington University in St. Louis,

Missouri; Walter Zahorodny, PhD, University of Medicine and Dentistry of New

Jersey, Newark; Julie Daniels, PhD, University of North Carolina, Chapel Hill; Ellen

Giarelli, EdD, Drexel University, Philadelphia, Pennsylvania; Jennifer Pinto-Martin,

PhD, University of Pennsylvania; Susan E. Levy, MD, The Children’s Hospital of

Philadelphia, Pennsylvania; Joyce Nicholas, PhD, Jane Charles, MD, Medical

University of South Carolina, Charleston; Judith Zimmerman, PhD, University of

Utah, Salt Lake City; Matthew J. Maenner, PhD, Maureen Durkin, PhD, DrPH,

University of Wisconsin, Madison; Catherine Rice, PhD, Jon Baio, EdS, Kim Van

Naarden Braun, PhD, Keydra Phillips, MPH, Nancy Doernberg, Marshalyn Yeargin-

Allsopp, MD, Division of Birth Defects and Developmental Disabilities, National

Center on Birth Defects and Developmental Disabilities, CDC.

Data collection was coordinated at each site by ADDM Network project coordinators:

Anita Washington, MPH, Yasmeen Williams, MPH, Kwin Jolly, MS, Research

Triangle Institute, Atlanta, Georgia; Neva Garner, University of Alabama at

Birmingham; Kristen Clancy Mancilla, University of Arizona, Tucson; Allison Hudson,

University of Arkansas for Medical Sciences, Little Rock; Andria Ratchford, MSPH,

Colorado Department of Public Health and Environment, Denver; Yolanda Castillo,

MBA, Colorado Department of Education, Denver; Claudia Rojas, Yanin Hernandez,

University of Miami, Coral Gables, Florida; Kara Humes, Rebecca Harrington, MPH,

Johns Hopkins University, Baltimore, Maryland; Rob Fitzgerald, MPH, Washington

University in St. Louis, Missouri; Josephine Shenouda, MS, University of Medicine

and Dentistry of New Jersey, Newark; Paula Bell, University of North Carolina,

Chapel Hill; Rachel Reis, University of Pennsylvania, Philadelphia; Lydia King, PhD,

Medical University of South Carolina, Charleston; Amanda Bakian, PhD, Amy

Henderson, University of Utah, Salt Lake City; Carrie Arneson, MS, University of

Wisconsin, Madison; Susan Graham Schwartz, MSPH, CDC. Additional assistance

was provided by project staff including data abstractors, clinician reviewers,

epidemiologists, and data management/programming support. Ongoing ADDM

Network support was provided by Joanne Wojcik, Victoria Wright, National Center on

Birth Defects and Developmental Disabilities, CDC, Rita Lance, Northrop Grumman,

contractor to CDC.

Katie K. Green, MPH, CHES

Health Communication Specialist

CDC’s “Learn the Signs. Act Early.” Program

Helping Families “Learn the Signs” and “Act Early”

National Center on Birth Defects and Developmental Disabilities

Division of Birth Defects and Developmental Disabilities, Prevention Research Branch

Purpose

To improve early

identification of autism

and other developmental

disabilities so children

and their families can get

the services and support

they need

“Learn the Signs. Act Early.” Overview

Program Components

Health education campaign

Act Early initiative

Research and evaluation


Program Component 1: Health Education Campaign

Aims to change

perceptions about the

importance of identifying

developmental concerns

early

Gives parents,

professionals free tools to

help track development

Promotes awareness


Communication Objectives

Parents of young children…

Know that developmental milestones exist

Monitor their child’s development

Recognize some early warning signs of delay

Know the importance of acting early

Initiate discussion with provider about development



Health Care Providers who serve young children…

Initiate discussion with parent about development

Encourage developmental monitoring

Are receptive to parental concern (and take action!)

Have and use campaign materials (reinforce msg)



Early Educators/ Child Care Providers…

Know that developmental milestones exist

Know the early warning signs of delay

Have self-efficacy to talk with parents about

development

Aid in monitoring development

Have and use campaign materials (reinforce msg)


Learn the Signs. Act Early. www.cdc.gov/actearly

“Learn the Signs. Act Early.” Materials 101:

Campaign materials are

FREE!

Research-based, audience-tested

Designed for parents (mostly)

Useful for all those working with young children

Written in plain language

Focused on milestones, when to act early, what

to do if concerned


“Learn the Signs. Act Early.” Materials 101:

Campaign materials are

Reproducible (no copyright)

Easily customizable

Available in Spanish (and a few in other

languages)

Available to print immediately (most)

Popular!


Materials 101: Print Materials

“The Milestones Collection”

Milestones Card

Milestones Brochure

Milestone Moments Booklet

Growth Chart

“Parent Kit”


Materials 101: Print Materials

“Amazing Me—It’s Busy Being 3!”

Children’s book

Milestones highlighted throughout story

Parent section includes 3 year-old milestones, tips,

when to act early

Limited availability

Fotonovela coming soon!


Materials 101: Ready-to-Print Materials

Milestones Checklists

2 months—5 years of age

Condition-Specific Fact Sheets

Lay introduction to disability

ASD, Asperger’s Syndrome, ADHD, FASD, CP, Intellectual

Disability, Vision Loss, Hearing Loss, Duchene’s Muscular

Dystrophy

Developmental Screening Fact Sheet

National Resource List


Materials 101: Outreach Materials

Flyers

Half sheet

General/Parent, Early Educator, Health Professional

Card Stand

Displays Milestones Cards and/or Milestones Brochures

Exhibit Table Topper

Public Service Announcements

TV & Radio

“Baby Steps” video

Web banner ads

Web buttons


Materials 101: E-Resources

Milestones Quiz Widget

Interactive Milestones Checklists

Milestone Moments Fun Facts

Health-E-Card (links to milestones page)

http://www.cdc.gov/NCBDDD/actearly/quiz/getWidget.html


Materials 101: Materials for Professionals

Early Educators/Child Care Providers

“Go Out & Play” Kit (ready-to-print)

Tips for Talking with Parents (ready-to-print)

Suggested links

Health Care Professionals

Autism Case Training (ACT) Curriculum

(ready-to-print, view online)

Suggested links

Including links to MCHAT, and other info about screening


Materials 101: Materials for Professionals

Milestones materials have multiple

professional uses

Early educators: milestone checklists or Milestone

Moments booklet >> track milestones & communicate with

parents

Home visitors : Milestone Moments booklet >> tool to help

parents track milestones and try new activities between visits

College instructors/ Professional trainers: Milestone

Moments booklet>> used to teach about development

Academic detailers: Milestone Moments booklet>>

offering of booklets for patients helped them gain access to

practices


Materials 101: Making the Materials Your Own

Customize! Help parents get help for their child sooner—

customize LTSAE materials with local contact

information and resources. Promote

customization among your partners.

Nearly all campaign materials can be customized with

your organization’s local contact information and logo.

1. Contact us and we will provide access to our file

sharing site

and the editable file (Adobe InDesign).

2. You add your contact information and/or logo.

3. You take the files to a local printer.


Examples:

Display brochures in pediatric waiting or exam rooms

Include a campaign flyer in mailings to parents (i.e. birth

certificates)

Include Milestone Moments booklets in new patient “welcome”

packets/ or “new mom” gift bags (encourage them to bring to

every well-child visit)

Incorporate Milestone Checklists into the home visit or WIC

certification visit (encourage staff to guide parent through

checklist during visit)

Materials 101: Putting the Materials to Work


Examples:

Encourage child care resource and referral agencies to offer a

milestones brochure when parents call with questions about

development//share cond-specific disability fact sheets with

child care professionals

Ask partners to add the LTSAE web button to their homepages

Have colleagues show the Milestone Moment Fun Facts during

break times at trainings or presentations

Add the Baby Steps video or TV PSA to waiting room video

programming



Examples:

Share “Go Out & Play” kit with child care trainers

Ask local day cares to celebrate kids birthdays by sending an

E-card to mom and dad

Add the campaign table topper to all planned exhibits

Share materials through new parent classes, breastfeeding

support groups, toddler play groups/classes



Get Creative!

Think impact!

Share your message in “surround-sound!”



Materials 101: Get the Most from Materials

Remember:

These materials are just the introduction to our

messages

How the materials are delivered, who delivers them,

and how often are all critical to the message making

a difference

Parent, early educators, and health professionals

need support to take the next step; tap into supports

that are already in place

Contact us!

[email protected]

Contact me!

[email protected]

The National Resource & Information Center

Website: www.autismnow.org

Information & Referral Call Center: 1-855-828-8476

Next Webinar: Tuesday, April 24, 2012, 2:00-3:00 PM, EDT Overview of Disability Services

PowerPoint/Recording: We will send out these materials to all attendees. If you do not receive

them, please email Phuong ([email protected] ).

http://www.autismnow.org/

http://www.autismnow.org/

mailto:[email protected]

CDC Webinar with Autism NOW April 17, 2012

Documents

milestone

salt lake

developmental

identified

johns hopkins

developmental

early warning

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