Learn the Signs. Act Early. Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Learn the Signs. Act Early. It’s time to change how we view a child’s growth

CDC, our planners, and our presenters wish to disclose they have no financial interest or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use. The findings and conclusions in this presentation are those of the author and do not necessarily represent the views of the Centers for Disease Control and Prevention

Campaign Founding Partners American Academy of Pediatrics (AAP) Autism Society of America (ASA) Autism Speaks First Signs Organization for Autism Research (OAR) …and many community champions!!! Strategic partnerships in the pediatric and autism community have been vital components to the campaign’s success Campaign’s founding partners: AAP, ASA, Autism Speaks, First Signs and OAR In addition to these national groups, we are partnering with more than 500 individuals in a grassroots effort to spread the message of this campaign

Every child reaches his or her Mission Every child reaches his or her full potential Campaign mission – for all children to reach their full potential Early intervention for a developmental delay – a child’s best hope for reaching his/her potential

Early Research: Health Care Providers Less than one-third (27%) believed their colleagues are well-informed about developmental disorders 42% did not know autism can be diagnosed as early as 18 months 59% said they do not have resources needed to educate parents To ensure the campaign would grab the attention of the targeted audiences and help them achieve the campaign’s mission, formative research was conducted before the campaign launched: Research with health care professionals revealed that the campaign could have an important role to play in meeting their needs for information: More information on developmental disorders Awareness that autism can be diagnosed as early as 18 months, so they are not waiting to look for signs of a delay More resources to educate parents

Early Research: Parents Lacked knowledge about Cognitive, emotional, and social development Developmental delays Recommend efforts communicate the urgency of acting early when there is a concern about developmental delay Clear consensus to avoid using language such as “autism” and “ASD” in materials designed to reach all parents of young children Parents tend to focus on physical development: height and weight. The were not as aware that they should also be tracking their child’s cognitive, emotional, social development, equipping them to identify developmental delays About half of the parents with typically developing children were familiar with autism, however few of them could actually define it or identify warning signs. Prior to their child’s diagnosis, most parents of children with autism knew very little about the condition or the warning signs. Parents said that the campaign needed to communicate a sense of urgency if there is a concern, so that they know not to “wait and see.” There was a clear consensus – among parents of children with autism and parents of typically developing children – that to reach parents with information on child development, the campaign should steer away from using language such as “autism” and “ASD.” Prior to being told their child had autism, they would not pay attention to or would turn away from information that focused on autism. Campaign theme born from research findings - “Learn the Signs. Act Early.” Teaching parents: to “learn the signs” of early childhood development that “acting early” if they see a sign of a developmental delay or disability can help their child reach their full potential

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

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.

Health Care Professional Resource Kit Health Care Professional Kit Designed to encourage conversation between professionals and parents Include posters, fact sheets, and informational cards, which have milestones by age and questions parents should ask their child’s doctor Fact sheets focus on milestones for each age (3 months through 5 years); developmental disorders, such as autism, cerebral palsy, and ADHD; resources for parents; and the importance of developmental screening Posters for exam rooms, posters for waiting rooms, info card stands Stand with 200 Informational Cards Small Posters (3) Set of 15 Fact Sheets

Parent Resource Kit Informational Card (1) Set of 8 Fact Sheets Developed resource kit for parents Growth chart, fact sheets, and an informational card Kit contains information about developmental milestones. A great resource in the kit is a growth chart, shown on the right of this slide. Parents are used to tracking their child’s height; this growth chart allows them to track other developmental milestones – such as waving, pointing, and showing affection – in addition to height. Informational Card (1) Set of 8 Fact Sheets Growth Chart (1)

Early Educator Resource Kit CD-ROM Fact sheets Milestones checklists Tips for talking to parents The kit includes a CD-ROM of fact sheets that providers can print out. It includes fact sheets on the age-specific milestones, developmental disabilities such as autism, along with other information include milestones checklists and resources. The CD-ROM also contains tips for talking to parents, a need we heard loud and clear during our research. Rounding out the kit are growth charts, small posters, and flyers that can be shared with parents. Flyers for Parents (50) Small Posters (3) Growth Charts (3)

Additional Resources on the Web www.cdc.gov/actearly CDC and AAP screening guidelines Coding information AAP Autism Toolkit M-CHAT template & instructions Interactive Milestone Checklist TV, Radio, & Print PSAs “Template” Materials Links to Partners, Resources

Promoting the Campaign Messages/Materials Strategic placement PSAs, print ads, flyers, e-cards, weblinks, newsletter articles, etc. Conference attendance (exhibit/present) Opportunities offered by partners

Promoting the Campaign Messages/Materials

Have Heard of “Learn the Signs. Act Early.” (2007) The campaign uses DocStyles, an internet-based panel survey. These data are from the 2007 survey, which included 765 physicians (250 pediatricians and 515 FP/GPs) 43% of pediatricians and 25% of FP/GPs have heard of the campaign.

Good news… More parents look for developmental milestones and know behaviors that suggest early signs of autism More HCPs state they have resources to educate parents Fewer HCPs advocate a “wait and see” approach when they suspect a child of having a developmental delay Parents More are looking for developmental milestones More know behaviors that suggest autism/early signs HCPs Fewer are recommending “wait and see” approach More state they have resources to educate parents More have favorable views of early intervention

Good news… More parents and HCPs Know the early warning signs of autism Believe that early identification/intervention can help and the best time is for children 2 years old and younger Report talking with each other about child development

Areas for Improvement Parents Need more encouragement to ask questions about child development Need to know what to do if a physician says “wait and see” Need to understand how difficult diagnosis is

Areas for Improvement HCPs Family Physicians and General Practitioners need to know more about referral resources and that diagnosis can occur as early as 18 months Need to use standardized screening tools

Act Early Need more Clarity Specificity Concordance in expectations

Act Early Screening, Identification, Referral, Diagnosis, Eligibility determinations What? How? When? Where? Who? Internal and external discussions Regional Meetings

How to Get Involved Visit www.cdc.gov/actearly today! Promote the campaign’s resources among colleagues, providers, parents… Distribute materials in your community Participate in grassroots outreach efforts--Speak about the campaign Provide ideas about Act Early messages How to get involved: Promote campaign among faculty and trainees Distribute materials Speaking to people in your community about the campaign Provide ideas about Act Early messages There are many tools to support you available on the Web site and you can also email us at actearly@cdc.gov to get involved!

Thank you! www.cdc.gov/actearly www.cdc.gov/autism kkilker@cdc.gov The findings and conclusions in this presentation are those of the author and do not necessarily represent the views of the Centers for Disease Control and Prevention