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

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

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 2006-2010 (10+CDC) 16 ADDM Sites 2001-2006 (15 +CDC) Guam +

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.

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.

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

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.

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

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

Communication Learn the Signs.

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.

Campaign materials

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

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

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

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)

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

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

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