1. Autism Spectrum Disorders Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Autism Spectrum Disorders Centers for Disease Control and Prevention
OSEP
December 8, 2008

2. CDC Programs Specific to ASDs
Surveillance/Monitoring—Address questions on the prevalence/trends
Epidemiologic Research: Examine risk/protective factors
Prevention/Translation of Research— “Learn the Signs. Act Early.”
CDC’s current autism program has activities in each of the major public health components.
Surveillance re: the ADDM network – address issues relative to the burden of the disorder and to track trends
CDC has funded a network of 5 research sites – the CADDRE network to examine risk and protective factors for autism (Dr. Newschaffer will tell you more about this in his presentation.)
Prevention – CDC has partner with Autism Speaks to conduct a major health education campaign aimed at increasing awareness of the importance of early identification. Research has shown that early intervention leads to improve development in children with autism

3. CDC Establishing a Network to Monitor ASDs and other DDs in the United States
Autism and Developmental Disabilities Monitoring Network (ADDM): In 1999/2000 CDC began funding states to develop programs to monitor the prevalence of autism. CDC is currently funding ADDM programs in 10 sites representing 11 states.
Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology (CADDRE). The Children’s Health Act of 2000 directed CDC to establish regional centers of excellence for autism and other developmental disabilities for surveillance and research the causes and correlates of autism. Since 2001, CDC has funded CADDRE programs in 5 sites representing 6 states.
Washington
Montana
Maine
North Dakota
Minnesota
Vermont
Oregon
Michigan
New
Hampshire
Wisconsin
Idaho
South Dakota
Massachusetts
New York
Wyoming
Michigan
Rhode Island
Iowa
Pennsylvania
Connecticut
Nebraska
Nevada
New Jersey
Indiana
Ohio DC
Utah
Illinois
Delaware
Colorado
West
Virginia
Maryland
California
Kansas
Missouri
Virginia
Kentucky
North Carolina
Tennessee
Arizona
Oklahoma
Arkansas
New Mexico
South
Carolina
Mississippi
Georgia
Alabama
Texas
Florida
Alaska
Louisiana
U.S. Virgin Islands
Hawaii
Puerto Rico
CDC
11 ADDM Sites (10+CDC)
16 ADDM Sites (15 +CDC)
Guam +

4. Surveillance Year 2002 (8-year-olds born in 1994)
Sites represented approximately 10% of US 8-year-old children - 2,685 children were identified with an ASD.
The average prevalence across all sites was very similar to 2000 at 6.6 per 1,000.
There was also a range 3.3 (AL) to 10.6 (NJ) per 1,000 children
Between 1:100 and 1:300 with an average of 1:150 children with ASD.

5. Study to Explore Early Development (SEED)
Multi-state collaborative study to help identify factors that may put children at risk for autism spectrum disorders and other developmental disabilities.
California, Colorado, Georgia, Maryland, North Carolina, Pennsylvania
Approximately 2,700 children, ages 2 to 5, and their parents will be part of this study.

6. Research Areas Included
Infection and immune function, including autoimmunity
Reproductive and hormonal features
Gastrointestinal features
Genetic features
Investigation of the broader ASD phenotype
Sociodemographic characteristics
Substance use, hospitalizations and injuries, sleep disorders, and mercury exposure

7. Every child should meet their full potential.
Parent Education Campaign Developmental milestones and early warning signs of delay
Every child should meet their full potential.

8. Learn the Signs. Act Early.
Parent education campaign
about developmental milestones
and warning signs of delay

9. Campaign Objectives
Increase AWARENESS of developmental milestones and early warning signs
Increase KNOWLEDGE in the benefits of early action and early intervention
Increase parent-provider DIALOGUE on the topic of developmental milestones and disorders
Increase EARLY ACTION on childhood developmental disorders
The objectives of the campaign are to:
Increase AWARENESS of developmental milestones and early warning signs
Increase KNOWLEDGE in the benefits of early action and early intervention
Increase parent-provider DIALOGUE on the topic of developmental milestones and disorders
Increase EARLY ACTION on childhood developmental disorders

10. Communication Learn the Signs.

11. Target Audiences Health Care Professionals (HCPs)
Pediatricians, family physicians, physician assistants, nurse practitioners, nurses, and others
Parents of Young Children
Ages 4 and younger
Early Educators (EEs)
Preschool teachers, day care providers, and others
Target Audiences:
Health care professionals – the campaign launched to HCPs in the Fall of 2004, prior to any outreach to parents, so they would be equipped with the information and resources needed to help parents
Parents of Young Children – the campaign began raising awareness among parents in February 2005, educating them on the milestones and encouraging them to discuss their child’s development with their child’s HCP
Early Educators – like HCPs, research showed that EEs did not have the tools they need to talk with parents about childhood development, but see themselves as advocates for the children in their care. The campaign launched a series of materials to assist them at the National Association for the Education of Young Children (NAEYC) conference in 2006.

12. Campaign materials

13. Mobilization Act Early
Catalyst in helping parents and professionals to learn the signs and act early

14. Act Early Regional Summits
Bringing together key stakeholders in states to improve early identification and early intervention.

15. 2007-2008 Act Early Regional Summits
Region V – “Creating Medical Home Solutions for Individuals with Autism,” December 2007
Region VII Summit (Iowa, Kansas, Missouri and Nebraska) - Kansas City, MO February 2008
Region VI Summit (Arkansas, New Mexico, Louisiana, Oklahoma, and Texas) - Albuquerque, NM March 2008

16. Proposed outcomes of the Act Early Regional Summits
Increase awareness of Learn the Signs. Act Early, campaign and its impact in target regions
Develop common understanding among stakeholders of opportunities, challenges and barriers to early identification and diagnosis
Enhancing partnerships at the federal level (CDC, HRSA, AUCD)

17. Proposed outcomes of Regional Summits (continued)
Develop state teams to initiate and/or enhance state wide early identification, diagnosis and service provision and coordination for families with ASD
Create national web-based forum to disseminate promising evidence-based practices for stakeholders to use to develop innovative approaches in their states

18. Future plans Act Early activities
AUCD and HRSA
2009 Act Early Regional Summits
AUCD
Act Early fellow
Collaborative Research Awards
Research Topics of Interest – Developmental Screening

19. www.cdc.gov/actearly www.cdc.gov/autism gpeacock@cdc.gov
Questions?
The findings and conclusions in this presentation
are those of the author and should not be construed
to represent any agency determination or policy.