Autism Activities at CDC: The Public Health ModelAutism Activities at CDC: The Public Health ModelThe Public Health ModelThe Public Health Model

Act Early Region II SummitBronx, NY

March 26, 2009

Marshalyn Yeargin-Allsopp, MDGeorgina Peacock, MD, MPHNational Center on Birth Defects and

Developmental Disabilities

Public Health ModelPublic Health ModelPublic Health ModelPublic Health Model

Surveillance Research

PreventionPrevention

Autism Activities at CDCAutism Activities at CDC

Surveillance/Monitoring— Address questions on the prevalence/trendsquestions on the prevalence/trends

Epidemiologic Research — Examine risk/protective factors

Prevention “Learn the Signs Act Early ” Prevention— Learn the Signs. Act Early.

Metropolitan Atlanta Developmental DisabilitiesMetropolitan Atlanta Developmental DisabilitiesMetropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)

Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)

Ongoing, active monitoring program since 1991 5 counties of metro Atlanta Multiple sources (educational, clinical, service sources) 5 Disabilities: Mental Retardation/ Mental Retardation/

Intellectual Disability Cerebral Palsy Hearing Loss Vision Impairment Autism Spectrum Disorders (since 1996) Autism Spectrum Disorders (since 1996)

How do the rates of ASDs compare with th di biliti ?

How do the rates of ASDs compare with th di biliti ?other disabilities?other disabilities?

MADDSP Rates of Developmental Disabilities (8- MADDSP Rates of Developmental Disabilities (8year-olds, 1996)

I t ll t l Di biliti 15 5 1 000 Intellectual Disabilities 15.5 per 1,000 Autism 4.2 per 1,000

C b l P l 3 6 1 000 Cerebral Palsy 3.6 per 1,000 Hearing Loss 1.4 per 1,000 Vision Impairment 1 4 per 1 000 Vision Impairment 1.4 per 1,000

Karapurkar-Bhasin, Brocksen, Avchen, Van Naarden Braun. Prevalence of four developmental disabilities among children aged 8 years - the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and g y p p g ,2000. MMWR SS 2005;55;1–9.

Autism and Developmental Disabilities

Washington

Monitoring (ADDM) Network

Montana

Oregon

N d

Idaho

Wyoming

North Dakota

South Dakota

Minnesota

IowaNebraska

Maine

New York

Michigan

Wisconsin

Michigan

New Jersey

Vermont

Rhode IslandConnecticut

New Hampshire

Massachusetts

Pennsylvania

Nevada

California

Utah

ArizonaNew Mexico

ColoradoKansas

South Carolina

North Carolina

Virginia

Oklahoma

Missouri

ArkansasTennessee

Kentucky

IllinoisIndiana Ohio

West Virginia

DC

MarylandDelaware

e Je sey

TexasFlorida

Mississippi

Louisiana

Alabama

Georgia

Carolina

Alaska

U S Virgin Islands

Hawaii

U.S. Virgin Islands

Puerto Rico

Guam

CDC

11 ADDM Sites 2006-2010 (10+CDC)

16 ADDM Sites 2001-2006 (15 +CDC)+

Goals: Accurate and comparable population-based p p p

estimates of the prevalence of Autism Spectrum Disorder (ASD) in selected regions

f U Sof U.S. Describe the characteristics of children with

A tiAutism Examine trends in prevalence

Prevalence ConclusionsPrevalence Conclusions Results from the largest US multi-site collaboration to

monitor ASDs underscore that ASDs are conditions of urgent public health concern.urgent public health concern.

For the majority of communities represented, ASD prevalence ranged from 5.2-7.6 per 1000 childrenS i ti Some variation ASD prevalence significantly lower in 1 site (AL) and higher

in 1 site (NJ). Average of 1 in 150 children

(range from about 1 in 100 to 1 in 300)

How many children in the U.S. have an ASD?How many children in the U.S. have an ASD?yy Estimated: 560,000 children between 0-21 years

Centers for Disease Control and Prevention (CDC). Prevalence of —Autism Spectrum Disorders --- Autismand Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002. MMWR SS 2007;56(No SS-1)2007;56(No.SS-1).

Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE)

Washington

Research and Epidemiology (CADDRE)

Montana

Oregon

N d

Idaho

Wyoming

North Dakota

South Dakota

Minnesota

IowaNebraska

Maine

New York

Michigan

Wisconsin

Michigan

New Jersey

Vermont

Rhode IslandConnecticut

New Hampshire

Massachusetts

Pennsylvania

Nevada

California

Utah

ArizonaNew Mexico

ColoradoKansas

South Carolina

North Carolina

Virginia

Oklahoma

Missouri

ArkansasTennessee

Kentucky

Illinois Indiana Ohio

West Virginia

DC

MarylandDelaware

e Je sey

TexasFlorida

Mississippi

Louisiana

Alabama

Georgia

Carolina

Alaska

U S Virgin Islands

Hawaii

U.S. Virgin Islands

Puerto Rico

Guam

CADDRE grantees including Data Coordinating CenterCADDRE grantees, including Data Coordinating Center

CDC, 6th CADDRE site

Research: Study to Explore Early Development (SEED)

Research: Study to Explore Early Development (SEED)y p y p ( )y p y p ( )

Multi-state collaborative study to help identify factors that may put children at risk for autism spectrumthat 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.

Study to Explore Early Study to Explore Early

Main research areas

Development (SEED)Development (SEED) Main research areas

ASD phenotypic variationSubgrouping for etiologic analysis

Infection and immune function, including autoimmunity

Reproductive and hormonal features Reproductive and hormonal features Gastrointestinal features Genetic features

S i d hi f t Sociodemographic features

Early ASD SurveillanceEarly ASD Surveillance

Challenge = The median age of ASD diagnosis is 4 5-5 5 years of age (ADDM Network) Current4.5-5.5 years of age (ADDM Network). Current surveillance must rely on older children to understand peak prevalence. No model for p ppopulation-based surveillance of ASDs in young children in US.

Goal = develop a valid way to characterize and track the population of children with an ASD in

hild ( d th f 4)young children (under the age of 4). Long-range goal = tie population-based surveillance with efforts

for early identification (“Learn the Signs. Act Early.”), screening, and link to intervention.

Model Projects for Early ASD SurveillanceModel Projects for Early ASD Surveillancej yj yResponse = NCBDDD issued a development RFA for

FY07 to support 3 projects (CA, FL, UT) to assess the pp p j ( , , )feasibility of Early ASD Surveillance.

Implementation RFA funded in FY08 for 2 i (CA FL)sites (CA, FL). UT continuing screening / surveillance efforts

on smaller scale.ADDM S th C li it i d t id ADDM South Carolina site received outside funding to supplement 8-year-old surveillance for 4 year olds.

MA Department of Health use of Early MA Department of Health use of Early Intervention Data to track ASDs – Susan Manning presented to ADDM and Early ASD Sites in 2008.

Methods of the state sitesMethods of the state sitesMethods of the state sitesMethods of the state sites

MA Early Intervention admin classification of autismMA Early Intervention admin classification of autism

SC Multiple source records-based ADDMp

CA Multiple source records-based and select screening

UT Screening in select pediatric practices

FL Screening in multiple pediatric practices

Benefits of Early ASD surveillanceBenefits of Early ASD surveillanceBenefits of Early ASD surveillanceBenefits of Early ASD surveillanceBenefits of Early ASD surveillanceBenefits of Early ASD surveillanceBenefits of Early ASD surveillanceBenefits of Early ASD surveillance

Best estimate of true prevalence at very young agesBest estimate of true prevalence at very young ages Best estimate of true prevalence at very young agesBest estimate of true prevalence at very young ages Compare rates from direct assessment v. administrative Compare rates from direct assessment v. administrative

methods, to see possible trends in awareness and methods, to see possible trends in awareness and diagnostic practicesdiagnostic practicesdiagnostic practices diagnostic practices

Opportunity to study validity of screening instruments and Opportunity to study validity of screening instruments and effectiveness of screening processeffectiveness of screening process

How to increase specificityHow to increase specificity How to increase specificityHow to increase specificity How do parents respond to screeningHow do parents respond to screening How can communities plan and provide supportHow can communities plan and provide support

Establish a cohort that can be followed over time to Establish a cohort that can be followed over time to examine developmental course and costs of care.examine developmental course and costs of care.

Provide participants the opportunity to seek earlier Provide participants the opportunity to seek earlier p p pp yp p pp yintervention.intervention. Source: J. MillerSource: J. Miller

Learn the Signs. Act Early.Learn the Signs. Act Early.g yg y

www.cdc.gov/actearly

Learn the Signs Act EarlyLearn the Signs Act EarlyLearn the Signs. Act Early.Learn the Signs. Act Early.

Traditional health Traditional health communication campaign

Capacity building through the Act Early projectproject

Partnership engagement

Evaluation

Communication ObjectivesCommunication ObjectivesCommunication ObjectivesCommunication Objectives

Raise awareness of Raise awareness of developmental milestones and early warning signs of developmental delay.

Increase knowledge about Increase knowledge about the benefits of early action and early intervention.

Increase parent-provider di l th t i fdialogue on the topic of developmental milestones and disorders.

Increase early action for ydevelopmental disorders.

Target AudiencesTarget AudiencesTarget AudiencesTarget Audiences

H lth C P f i l Health Care ProfessionalsPediatricians, family physicians,

physician assistants, nurses, allied health professionals

Parents of Young Children Ages 4 and younger

Early Educators

MaterialsMaterials

Flyers

Fact Sheets on Milestones and Developmental Disabilities

Growth Chart

Poster

Informational Card

Working TogetherWorking TogetherWorking TogetherWorking Together

Ensuring that every childEnsuring that every child reaches his or her full potential

Maternal & Child H lth B

National Center on Health Bureau Birth Defects &

Developmental Disabilities

Capacity buildingCapacity buildingCapacity buildingCapacity building

CDC& HRSA C ll b ti CDC& HRSA CollaborationAct Early Summits Act Early Minigrants

Other CDC initiatives Research Topics of Interest (RTOIs)Collaborative Research Awards (CRAs)Collaborative Research Awards (CRAs)

Thank you!Thank you!Thank you!Thank you!

www.cdc.gov/ncbddd

gpeacock@cdc.gov