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

National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities

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
• Multisite, multisource, records-based surveillance methodology
Screening and abstraction of records at multiple data sources in community

All abstracted evaluations reviewed by trained clinicians to determine ASD case status

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)

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
2004

1994
1996

14
8

407,578
172,335

2,685
1,376

6.6
(3.3-10.6)

8.0
(4.6-9.8)

2006
2008

1998
2000

11
14

308,038
337,093

2,757
3,820

9.0
(4.2-12.1)

11.3
(4.8-21.2)

Change in Identified ASD Prevalence Among ADDM Sites
25

2002
Identified ASD Prevalence per 1,000 20

2006

2008

15

10

5

0

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

20 18
Identified ASD Prevalence per 1,000

*82%

16 14 12 10 8 6 4

Both Sexes Male Female
*78%

*63%

2
0 2002 2004
Surveillance Year

2006

2008

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

14 12 10 8 6 4 2 0 All Race/Ethnicity White Black Hispanic
*70%

Identified ASD Prevalence per 1,000

*78%
*91%

*110%

2002

2004
Surveillance Year

2006

2008

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

5
Identified ASD Prevalence per 1,000

4

IQ ≤ 70 IQ = 71-85 IQ > 85

*96% *44%

3

*107%

2

1

0 2002 2004
Surveillance Year
⁺Includes sites having information on intellectual ability available for at least 70% of children who met the ASD case definition

2006

2008

Variation across Sites in Identified Prevalence of ASDs
ADDM Network, 14 Sites, 2008
30 Health-Only Records Access Education & Health Records Access

Identified ASD Prevalence per 1,000

25

Prevalence for All Sites Combined

20

15

10

5

0

Change in Proportion of Children with Previously Documented ASD Classification
(Combining data from 10 sites completing 2002, 2006 and 2008 surveillance years)

Surveillance Year
% with Previously Documented ASD Classification

2002

2006

2008

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 44%

ASD/PDD 47%

Asperger Disorder 9%

Distribution of Subtypes:

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

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

• 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

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 YearginAllsopp, 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.

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

Katie K. Green, MPH, CHES Health Communication Specialist CDC’s “Learn the Signs. Act Early.” Program
National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities, Prevention Research Branch

“Learn the Signs. Act Early.” Overview
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

“Learn the Signs. Act Early.” Overview 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

“Learn the Signs. Act Early.” Overview
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

“Learn the Signs. Act Early.” Overview Communication Objectives 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)

“Learn the Signs. Act Early.” Overview
Communication Objectives 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.” 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.

www.cdc.gov/actearly

“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!

Learn the Signs. Act Early.

www.cdc.gov/actearly

Materials 101: Print Materials
“The Milestones Collection”  Milestones Card  Milestones Brochure  Milestone Moments Booklet  Growth Chart  “Parent Kit”

Learn the Signs. Act Early.

www.cdc.gov/actearly

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!

Learn the Signs. Act Early.

www.cdc.gov/actearly

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

Learn the Signs. Act Early.

www.cdc.gov/actearly

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

Materials 101: E-Resources


 

Milestones Quiz Widget Interactive Milestones Checklists Milestone Moments Fun Facts Health-E-Card (links to milestones page)

Learn the Signs. Act Early.

www.cdc.gov/actearly

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

Learn the Signs. Act Early.

www.cdc.gov/actearly

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

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.

Learn the Signs. Act Early.

www.cdc.gov/actearly

Materials 101: Putting the Materials to Work
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)

Learn the Signs. Act Early.

www.cdc.gov/actearly

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

Learn the Signs. Act Early.

www.cdc.gov/actearly

Materials 101: Putting the Materials to Work
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

Learn the Signs. Act Early.

www.cdc.gov/actearly

Materials 101: Putting the Materials to Work
Get Creative! Think impact! Share your message in “surround-sound!”

Learn the Signs. Act Early.

www.cdc.gov/actearly

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

Learn the Signs. Act Early.

www.cdc.gov/actearly

Contact us! ActEarly@cdc.gov
Contact me! KKGreen@cdc.gov

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 (pnguyen@autismnow.org ).