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Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification NAACHO Webcast April 17, 2008. Catherine Rice , Ph.D. Katie Kilker , MPH, CHES National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention. - PowerPoint PPT Presentation
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Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification NAACHO Webcast April 17, 2008 Catherine Rice, Ph.D. Katie Kilker, MPH, CHES National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention 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.
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  • Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification

    NAACHO WebcastApril 17, 2008Catherine Rice, Ph.D.Katie Kilker, MPH, CHESNational Center on Birth Defects and Developmental DisabilitiesCenters for Disease Control and Prevention

    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.

  • What is Autism?

  • Autism Spectrum Disorders (ASDs)Pervasive Developmental Disorders (PDD)PDD = an umbrella categoryAutismPDD-NOS (Atypical Autism)Aspergers SyndromeChildhood Disintegrative DisorderRetts Syndrome

  • 3 Core Areas Affected:Reciprocal Social InteractionsCommunicationBehaviors and Interests------------------------------------------------------Development in these areas follows a DIFFERENT path than that of most children. Differences are QUALITATIVE, not only the result of delays.

  • What is Autism?Developmental Disability not identifiable at birthNeurological Disorder complex genetic interaction + ???Complex Disorder many areas affectedWide Range of Impairmentmild to severe across areas

  • ASD Defies GeneralizationMeasured Intelligence Severe-----------------------------------------------GiftedSocial Interaction Aloof-----------------Passive-------------Active but oddCommunication Nonverbal-------------------------------------------VerbalBehaviors Intense---------------------------------------------------MildSensory Hyposensitive-----------------------------HypersensitiveMotor Uncoordinated-------------------------------Coordinated

  • DiagnosisBased on observable behaviorsPattern of developmentSocial, Communication, Behavioral Profile (DSM-IV Criteria)Developmental history is importantThere is no medical test to diagnose autism or related disordersRule out other disorders

  • Myths of AutismThe child with autismIs not affectionateDoes not form attachmentsNever makes eye contactDoes not communicateEngages in self-stimulatory and repetitive behaviors all the timeLack emotional experience

  • Issues of Autism LabelRarely diagnosed before 3 years (improving) Fear associated with AutismStereotypes of the person with autismBoys and developmental milestoneswait and see approachSubtler forms misdiagnosedAccess to services/treatment Early and intense intervention makes a difference!

  • What is Aspergers Syndrome?No delay in basic language skills, but communication may be impairedAverage to above average intelligenceCommon issues as high-functioning autismPattern of unusual development in social interaction skills and behaviorsImpairment in daily functioning, despite skillsOften not diagnosed until 6+ yearsEarly diagnoses: ADHD, OCD, LD, NVLD

  • Impact of ASD on ChildInability or difficulty communicating frustrationReduced understanding of what is going on around themLack of interest or skill in interactingUnusual play and learningUnusual sensory reactionsVariable attention, activity levelOther medical issues or sensitivities (seizures, GI distress, allergies, etc.)SAFETY (reduced awareness, reaction, and self-injury)

  • Impact of ASD on FamilyLack of support from other family members and community (know something is not going right)Navigating system to get help Just getting recognition of a problem is often a challengeHard to get intense intervention Long waits for diagnosisSignificant stress on parents and entire familySiblings may also have difficulties, or must act as caretakerIntense and complicated needs of childEmotional and financial costs of identifying problem and getting supportBombarded by options of interventions

  • Concerns Over Numbers of People with Autism

    Low Incidence Disorder?Past estimates of 4-5 per 10,000 children with autism

    Service Provider Numbers: show more people identified with an Autism Spectrum Disorder (ASD) for services

    Number of Children with Autism Served under IDEA, Part B, 1992-93 to 2000-01, 6-21 years

    Chart1

    15000

    17500

    20000

    26000

    31000

    40000

    52000

    65000

    79000

    School Year (# states reporting) *includes DC & PR

    Children with Autism Served

    Sheet1

    School Year# of Children# of States Reporting

    92-931992-1993 (n=49)1500049

    93-941993-1994 (n=51)1750051

    94-951994-1995 (n=52)2000052

    95-961995-1996 (n=52)2600052

    96-971996-1997 (n=52)3100052

    97-981997-1998 (n=52)4000052

    98-991998-1999 (n=52)5200052

    99-001999-2000 (n=52)6500052*(50 US States + DC & PR)

    00-012000-2001 (n=52)7900052

    Sheet1

    0

    0

    0

    0

    0

    0

    0

    0

    0

    School Year (# states reporting, includes DC & PR)

    Children with Autism Served

    Chart1

    14231042173

    228120170234

    266216248230

    350252304388

    231388467339

    427490434593

    566457488416

    656705664700

    728746846812

    676786831832

    723795

    Fourth Qtr

    Third Qtr

    Second Qtr

    First Qtr

    Year Number (1994 -2004)

    Number Increased per Quarter

    Quarterly Trends in Number of Persons with Autism Added to the System (1994-2004)

    Sheet1

    Date ReportedDate ReportedTotal Persons with AutismIncrease from Previous QuarterQuarterly Percent ChangeTotal* Caseload (CDERs)

    8/27/93Friday,August 27, 19934,911105,650

    1/24/94Monday,January 24, 19945,1081974.01%106,565

    4/14/94Thursday,April 14, 19945,2811733.39%107,367

    7/13/94Wednesday,July 13, 19945,323420.80%107,617

    11/8/94Tuesday,November 8, 19945,6333105.82%108,551

    1/12/95Thursday,January 12, 19955,7751422.52%109,359

    4/11/95Tuesday,April 11, 19956,0092344.05%110,886

    7/12/95Wednesday,July 12, 19956,1791702.83%111,928

    9/13/95Wednesday,September 13, 19956,2991201.94%112,464

    1/12/96Friday,January 12, 19966,5272283.62%113,047

    4/12/96Friday,April 12, 19966,7572303.52%114,139

    7/15/96Monday,July 15, 19967,0052483.67%115,214

    10/10/96Thursday,October 10, 19967,2212163.08%116,358

    1/10/97Friday,January 10, 19977,4872663.68%117,539

    4/9/97Wednesday,April 9, 19977,8753885.18%120,141

    7/16/97Wednesday,July 16, 19978,1793043.86%121,783

    10/8/97Wednesday,October 8, 19978,4312523.08%122,999

    1/8/98Thursday,January 8, 19988,7813504.15%124,024

    4/9/98Thursday,April 9, 19989,1203393.86%124,834

    7/8/98Wednesday,July 8, 19989,5874675.12%126,487

    10/7/98Wednesday,October 7, 19989,9753884.05%127,750

    1/6/99Wednesday,January 6, 199910,2062312.32%128,500

    4/7/99Wednesday,April 7, 199910,7995935.81%130,645

    7/7/99Wednesday,July 7, 199911,2334344.02%132,591

    10/7/99Thursday, October 10, 199911,7234904.36%133,888

    1/6/00Thursday, January 6, 200012,1504273.64%135,377

    4/6/00Thursday, April 6, 200012,5664163.42%136,536

    7/1/00Friday, July 7, 200013,0544883.88%138,700

    10/1/00Friday, October 6, 200013,5114573.50%140,316

    1/1/01Thursday, January 4, 200114,0775664.19%142,114

    4/3/01Tuesday, April 3, 200114,7777004.97%144,040

    7/6/01Friday, July 6, 200115,4416644.49%145,881

    10/4/01Thursday, October 4, 200116,1467054.57%147,857

    1/3/02Thursday, January 3, 200216,8026564.06%149,806

    4/4/02Thursday, April 4, 200217,6148124.83%152,062

    7/5/02Friday, July 5, 200218,4608464.80%154,190

    10/9/02Wednesday, October 9, 200219,6497466.44%161,947

    1/6/03Monday, January 6, 200320,3777283.71%163,792

    4/4/03Friday, April 4, 200321,2098324.08%165,535

    7/7/03Monday July 7, 200322,0408313.92%167,583

    10/3/03Friday, October 3, 200322,8267863.57%169,257

    1/5/04Monday, January 5, 200423,5026762.96%170,900

    4/2/04Friday, April 2, 200424,2977953.38%172,358

    7/2/04Friday, July 2, 200425,0207232.98%173,709

  • Public Health ModelSurveillanceWho is affected?ResearchWho is at risk?PreventionHow can we reduce risk and impairment?

  • CDC Programs Specific to ASDsSurveillance/MonitoringAddress questions on the prevalence/trends

    Epidemiologic Research: Examine risk/protective factors

    Prevention Learn the Signs. Act Early.

  • Whats in a Number?1 in 10,000 4-5 in 10,000 1 in 1,000 1 in 500

    1 in 200 1 in 166 1 in 150

  • Whats in a Number? How do we know who is affected?It is clear that more children are identified with an Autism Spectrum Disorder (ASD) than in the past.Children receiving services under a specific classificationChildren diagnosed in a medical or clinical settingWho else may have the condition(s)?Little population-based data of the features of ASDsPopulation screeningDirect screening who participates?Records-based screening

  • Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)

    Ongoing, active monitoring program since 19915 counties of metro AtlantaMultiple sources (educational, clinical, service sources)5 Disabilities:Mental Retardation/Intellectual DisabilityCerebral Palsy Hearing Loss Vision Impairment Autism Spectrum Disorders (since 1996)

  • How do the prevalence of ASDs compare with other DDs?MADDSP Prevalence of Developmental Disabilities per 1,000 8-year-olds in 2000

    Intellectual Disabilities12.0Autism6.5Cerebral Palsy3.1Hearing Loss1.2Vision Impairment1.2Karapurkar-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 2000. MMWR SS 2005;55;19.

  • Prevalence of MR, CP, HL, VI and ASDs Among Children in MADDSP 8 year olds (1991-1994, 1996, 2000, 2002)

    LINEAR Prev for 3 SY by subgrp

    1111111111

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    Study Year

    Prevalence per 1,000

    Prevalence of ASD for 1996, 2000 & 2002 by sex, race/ethnicity and cognitive functioning

    LOG Prev for 3 SY by subgroup

    1111111111

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    #REF!

    Study Year

    Prevalence per 1,000

    Prevalence of ASD for 1996, 2000 & 2002 by sex, race/ethnicity and cognitive functioning

    LINEARPrev for 3 SY by subgrp 2

    10.62.91.31199119911991

    132.91.41.4199219921992

    133.50.91.1199319931993

    13.23.41.51.1199419941994

    Mental Retardation

    Cerebral Palsy

    Hearing Loss

    Vision Impairment

    Autism Spectrum Disorders

    Study Year

    Prevalence of ASD per 1,000

    Figure 1. Prevalence of ASD for 1996, 2000, & 2002 by sex, race/ethnicity, cognitive functioning

    LOG Prev for 3 SY by subgrp 2

    10.62.91.31199119911991

    132.91.41.4199219921992

    133.50.91.1199319931993

    13.23.41.51.1199419941994

    Mental Retardation

    Cerebral Palsy

    Hearing Loss

    Vision Impairment

    Autism Spectrum Disorders

    Study Year

    Prevalence of ASD per 1,000

    Figure 1. Prevalence of ASD among males for 1996, 2000, & 2002 by sex, race/ethnicity, cognitive functioning

    CM chart version

    1.02530586530.46239799790.11394335230199119911991

    1.11394335230.46239799790.14612803570.1461280357199219921992

    1.11394335230.5440680444-0.04575749060.0413926852199319931993

    1.12057393120.5314789170.17609125910.0413926852199419941994

    0.5

    16.0

    8.0

    4.0

    2.0

    1.0

    Mental Retardation

    Cerebral Palsy

    Hearing Loss

    Vision Impairment

    Autism Spectrum Disorders

    Study Year

    Prevalence per 1,000

    Figure 1. Prevalence of ASD among males for 1996, 2000, and 2002, by race/ethnicity and cognitive functioning

    6.2

    10.3

    11.6

    2.2

    7.0

    6.5

    -0.8

    1.9

    1.1

    2.4

    2.5

    1.4

    -0.9

    1.4

    2.1

    2.9

    3.2

    4.0

    4.6

    4.5

    7.6

    MADDSP DD PREV LOG 1991-2002

    1.02530586530.46239799790.113943352301991

    1.11394335230.46239799790.14612803570.14612803571992

    1.11394335230.5440680444-0.04575749060.04139268521993

    1.12057393120.5314789170.17609125910.04139268521994

    1.19033169820.55630250080.14612803570.14612803570.6232492904

    1.0791812460.49136169380.0791812460.0791812460.8129133566

    1.10720996960.57978359660.146128035700.8808135923

    16.0

    1.0

    0.5

    8.0

    4.0

    2.0

    Mental Retardation

    Cerebral Palsy

    Hearing Loss

    Vision Impairment

    Autism Spectrum Disorders

    Surveillance Year

    Prevalence per 1,000

    15.5

    13.2

    13.0

    13.0

    10.6

    12.0

    12.8

    3.8

    3.1

    3.6

    3.4

    3.5

    2.9

    2.9

    1.3

    1.4

    1.5

    1.4

    1.2

    0.9

    1.4

    1.0

    1.4

    1.1

    1.1

    1.0

    4.2

    6.5

    7.6

    CM worksheet

    LOGLOGLOGLOGLOG

    Mental RetardationMental RetardationCerebral PalsyCerebral PalsyHearing LossHearing LossVision ImpairmentVision ImpairmentAutism Spectrum DisordersAutism Spectrum Disorders

    199110.61.02530586532.90.46239799791.30.113943352310

    1992131.11394335232.90.46239799791.40.14612803571.40.1461280357

    1993131.11394335233.50.54406804440.9-0.04575749061.10.0413926852

    199413.21.12057393123.40.5314789171.50.17609125911.10.0413926852

    199615.51.19033169823.60.55630250081.40.14612803571.40.14612803574.20.6232492904

    2000121.0791812463.10.49136169381.20.0791812461.20.0791812466.50.8129133566

    200212.81.10720996963.80.57978359661.40.1461280357107.60.8808135923

  • CDC has formed the Autism and Developmental Disabilities Monitoring (ADDM) Network in an effort to better understand the ASDs in the US.

    This is the first and largest multi-site report on ASD prevalence to use common methods in the US to date.

    Autism and Developmental Disabilities Monitoring (ADDM) Network

  • CDC Establishing a Network to Monitor ASDs and other DDs in the United StatesWashingtonMontanaOregonNevadaCaliforniaUtahArizonaNew MexicoColoradoIdahoWyomingNorth DakotaSouth DakotaMinnesotaIowaNebraskaKansasTexasFloridaMississippiLouisianaAlabamaGeorgiaSouth CarolinaNorth CarolinaVirginiaMaineNew YorkMichiganWisconsinOklahomaMissouriArkansasTennesseeKentuckyIllinoisIndianaMichiganOhioWest VirginiaDCMarylandDelawareNew JerseyVermontRhode IslandConnecticutNew HampshireMassachusettsAlaskaHawaiiPennsylvaniaU.S. Virgin IslandsPuerto RicoGuamCDC11 ADDM Sites 2006-2010 (10+CDC) 16 ADDM Sites 2001-2006 (15 +CDC)+

  • Phase 1 Results Summary of ADDM 2000, 2002, and Evaluation of ADDM Methods

    Three reports of the ADDM Network ASD prevalence results are published in CDCs MMWR Surveillance Summaries

    Feb 9, 2007www.cdc.gov/autism

    Podcast on Autismwww2a.cdc.gov/podcasts/

  • Surveillance Year 2002(8-year-olds born in 1994)For the year 2002, from the 14 sites representing approximately 10% of US 8-year-old children (born in 1994) 2,685 children were identified with an ASD.

    The average prevalence across all 14 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; however, for 12 of the 14 sites ASD prevalence was in a tighter range from 5.2 to 7.6 per 1,000. Between 1:100 and 1:300 with an average of 1:150 children with ASD.

  • Three reports of the ADDM Network ASD prevalence results are published in CDCs MMWR Surveillance Summaries www.cdc.gov/autism

    ADDM v Admin chart

    3.270.650.542.17072620660.53927379340.4307262066

    5.270.821.114.08337685770.95662314230.7733768577

    5.150.810.73.90024483290.70975516710.6002448329

    5.91.621.273.35753176041.27246823960.9275317604

    6.041.080.923.66521495410.86478504590.7052149541

    6.210.770.693.72398200080.60601799920.5239820008

    6.511.21.014.58383594691.01616405310.8338359469

    6.70.990.875.78695915480.93304084520.8069591548

    6.880.910.85.40140381660.80859618340.7014038166

    7.131.221.055.54210134131.08789865870.9121013413

    7.311.070.945.27648044490.92351955510.7864804449

    7.511.130.986.16669220161.03330779840.8866922016

    7.610.850.776.11751958280.77248041720.6875195828

    10.621.241.117.42907086191.05092913810.9190708619

    ADDM 2002 ASD Prevalence

    Previously Documented Classification

    Prevalence of ASD (per 1,000)

    ADDM v Admin Data

    ADDM 2002 ASD PrevalencePreviously Documented Classificationaddm-addm+admin-admin+addmLCIaddmUCIadminLCIadminUCI

    table ordertab 3atab 4c

    14AL354723.27772.170.540.650.430.542.733.921.742.71

    31PA210615.27864.081.110.820.770.964.166.093.315.04

    42WI351265.151373.900.700.810.600.714.455.963.34.61

    78CO110205.90373.361.271.620.931.274.637.522.434.63

    123SC231916.04853.670.921.080.710.865.127.122.964.53

    610AZ451136.211683.720.690.770.520.615.526.983.24.33

    115NC207256.51954.581.011.200.831.025.57.713.755.6

    92MD297226.701725.790.870.990.810.935.837.694.986.72

    56AR364726.881975.400.800.910.700.816.087.794.76.21

    147WV214727.131195.541.051.220.911.096.088.354.636.63

    23MO280497.311485.280.941.070.790.926.378.384.496.2

    134UT261087.511616.170.981.130.891.036.538.645.287.2

    89GA442997.612716.120.770.850.690.776.848.465.436.89

    1011NJ2974810.622217.431.111.240.921.059.5111.866.518.48

    min1.743.272.172.733.921.742.71

    max11.8610.627.439.5111.866.518.48

    Biggest difference = NJ 10.6-7.4 = 3.2 prev diff.30% underestimate

  • ADDM 2002 ASD Prevalence ResultsFor every 1 girl with ASD there was approximately 3 to 7 boys affected.

    5 of 14 sites identified more White non-Hispanic children with ASD than Black non-Hispanic children.

    ASD prevalence was lower among Hispanic children across all sites.

    Most children were receiving special education services at age 8 years.between 31% (CO) and 74% (MD) with autism eligibility.

  • ADDM ASD Early Delays and Age of Diagnosis In both reports, the majority of children identified with an ASD had documented concerns by a parent or professional before 3 years of age, such as concerns about the childs language, social, or play development,

    but the median age of earliest ASD diagnosis was approximately 4 to 5 years.

    Over the 2 year period from 2000 to 2002, this delay in documented ASD diagnosis did not decline for the 6 sites included in both study years.

  • ASD Over 2 Time Points 6 SitesSignificant Change

    Chart1

    6.56.35.54.56.59.9

    6.266.77.17.610.6

    AZ

    SC

    MD

    WV

    GA

    NJ

    ADDM v Admin Data

    200020022000-2000+2002-2002+

    AZ6.56.200.70.80.700.80

    SC6.360.91.10.901.10

    MD5.56.700.91.10.901.00

    WV4.57.100.90.91.001.30

    GA6.57.600.70.80.800.90

    NJ9.910.6011.21.101.30

    AZSCMDWVGANJ

    20006.56.35.54.56.59.9

    20026.2066.707.107.6010.60

    2000-0.70.90.90.90.71

    2000+0.81.11.10.90.81.2

    2002-0.700.900.901.000.801.10

    2002+0.801.101.001.300.901.30

  • ASDs Over 2 Time Points 6 SitesPrevalence was stable from 2000 to 2002 in four sites, but increased in 2 sites (slightly in GA and significantly in WV).

    While the stability of ASDs in 4 of the 6 sites is encouraging, the increase in 2 sites is a concern.

    We cannot yet say if ASDs are increasing overall, but these reports provide important baseline information continued monitoring of ASD prevalence in these sites will help us answer that question starting with children born in the 1990s.

  • Prevalence ConclusionsResults from the largest US multi-site collaboration to monitor ASDs underscore that ASDs are conditions of urgent public health concern.

    For the majority of communities represented, ASD prevalence ranged from 5.2-7.6 per 1000 childrenSome 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?Estimated: 560,000 children between 0-21 years

  • Next Steps for ADDM Network8 sites completed study year 2004 for ASD4 sites working on a joint trend report11 Sites beginning study year 2006 for ASD4 Sites for MR4 Sites for CPAnalyses using pooled datasetsPublic use datasetsNext surveillance study year, 2008

  • Public Health ModelSurveillanceWho is affected?ResearchWho is at risk?PreventionHow can we reduce risk and impairment?

  • Cause of AutismComplexity of Identifying CausesCause is likely to be CAUSESAutism is likely to be AUTISMSComplex Genetic and Environmental InteractionsWhat predisposes a child?What exposures are necessary?

  • Research: 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: Study to Explore Early Development (SEED)

    Some areas to be included:Infection and immune function, including autoimmunityReproductive and hormonal featuresGastrointestinal featuresGenetic featuresInvestigation of the broader ASD phenotypeSociodemographic characteristicsSubstance use, hospitalizations and injuries, sleep disorders, and mercury exposure

  • Interagency Autism Coordinating Committee (IACC)Congress called for an IACC to improve coordination of autism research among government and other organizationsIACC revising a National Research Plan for autism.www.nih/nimh/iacc.gov

    CDC is a member of the IACCAutism Speaks summarized Top 10 Research Findings of 2007

  • Significant NeedsImproving InterventionIndividualized interventionComprehensive treatment and coordinationAccess to interventionRapid, effective, and safe methods to evaluate new treatmentsCauses: Complex Genetic and Environmental InteractionsWhat predisposes a child?What exposures are necessary?Lifetime perspectiveChildren with ASD will be adults with ASDImproving IdentificationEarly, accurate, makes a difference in access to intervention

  • Public Health ModelSurveillanceWho is affected?ResearchWho is at risk?PreventionHow can we reduce risk and impairment?

  • Parent Struggle for Answers

    Early signs may be subtle Lack of physical signsInconsistent skills - strengths and weaknessesRegression in some childrenParents often suspect their child has a hearing losswas too good as a babyhas language delays

  • Parental Concerns (Wiggins, Baio, Rice, 2006)

    Recent study by CDC indicated most children with an ASD diagnosis had signs of a developmental problem before the age of 3, but average age of diagnosis was 5 years.

  • CDC Prevention:Learn the Signs. Act Early.Although we have much to learn about ASDs, there has been progress in the past 10 years. We do know that early identification and intervention can help a child develop skills, and that we need to do our best to appropriately plan for the significant support needs of people and families affected by ASDs.

    www.cdc.gov/actearly

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

    Activities in the Division of Birth Defects and Developmental Disabilities use the public health model. Surveillance of BD/DD feeds into research into particular birth defects and their etiologies. When a cause of a particular defect is identified through research, it can be intervened upon through prevention activities. The cycle continues, as the birth defects surveillance systems are critical in evaluating the effectiveness of birth defect prevention programs.

    A example that would fit into this cycle is folic acid for the prevention of neural tube defects. Rates of NTDs have been monitored by surveillance programs for many years. The lack of sufficient folic acid was identified as contributing to neural tube defects through several studies, and it was estimated that folic acid use may prevent 50-70% of all NTDs. Fortification of the U.S. grain supply with folic acid, as well as nationwide folic acid education programs, have led to a 26% decline in the neural tube defects spina bifida and anencephaly. This decline was detected using birth defects surveillance programs.CDCs 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 trendsCDC 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 Data on the prevalence rates of Developmental Disabilities comes from the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP).A study conducted by the Centers for Disease Control and Prevention, the Metropolitan Atlanta Developmental Disabilities Surveillance Program, found the rate of autism for children ages 3 to 10 years to be 3.4 per 1,000 children which is lower than the rate for mental retardation (9.7 per 1,000 children); but higher then the rates for cerebral palsy (2.8 per 1,000 children), hearing loss (1.1 per 1,000 children) and vision impairment (0.9 per 1,000 children) found in the same study.Approximately 2% of children under the age of 18 have a serious developmental disability (DD) and these include mental retardation, cerebral palsy, hearing loss and vision impairment. Of these serious DDs, mental retardation (or intellectual disability) is the most common. A genetic disorder often associated with having mental retardation (MR) or an intellectual disability (ID) that many people recognize is Down syndrome. Current information indicate that having Down syndrome occurs in 1 out of 800 births and is slightly less common than the ASDs. Approximately 17% of children have some type of developmental disability, including more mild conditions such as speech and language disorders, learning disabilities, and ADHD, which appear to be more common than the ASDs. While developmental disabilities may affect a childs speech or language, physical growth, psychological growth, self-care, or learning, childrens health may also be affected by diseases that impact adults as well. A common childhood disease, juvenile diabetes, is prevalent in approximately one in every 400 to 500 children and adolescents, which is in a similar range of the ASDs. However, the ASDs are more common than childhood cancer, which has a prevalence rate of 1.5 per 10,000 children (1 in 300 males and 1 in 333 females have a probability of developing cancer by age 20 according to the National Cancer Institute).

    This slide shows the period prevalence of our 5 DDs among 8 year olds for each of the MADDSP study years over time. For MR, CP, HL and VI data are shown from 1991 through 2002 study years and 1996 through 2002 for ASD.

    We found that the prevalence of MR increased from approximately 11 per 1,000 8 years olds in 1991 to 13 per 1,000 in 2002. We saw an increase to 15.5. per 1,000 in 1996 and while this is somewhat perplexing it is consistent with data from the Department of Education. We also found that the prevalence of CP is slightly increasing over time from 2.9 per 1,000 in 1991 to 3.8 per 1,000 in 2002.While there were minor fluctuations in the prevalence of HL and VI over time, the prevalence remains rather stable over this decade.

    A study conducted by the Centers for Disease Control and Prevention, the Metropolitan Atlanta Developmental Disabilities Surveillance Program, found the rate of autism for children ages 3 to 10 years to be 3.4 per 1,000 children which is lower than the rate for mental retardation (9.7 per 1,000 children); but higher then the rates for cerebral palsy (2.8 per 1,000 children), hearing loss (1.1 per 1,000 children) and vision impairment (0.9 per 1,000 children) found in the same study.Approximately 2% of children under the age of 18 have a serious developmental disability (DD) and these include mental retardation, cerebral palsy, hearing loss and vision impairment. Of these serious DDs, mental retardation (or intellectual disability) is the most common. A genetic disorder often associated with having mental retardation (MR) or an intellectual disability (ID) that many people recognize is Down syndrome. Current information indicate that having Down syndrome occurs in 1 out of 800 births and is slightly less common than the ASDs. Approximately 17% of children have some type of developmental disability, including more mild conditions such as speech and language disorders, learning disabilities, and ADHD, which appear to be more common than the ASDs. While developmental disabilities may affect a childs speech or language, physical growth, psychological growth, self-care, or learning, childrens health may also be affected by diseases that impact adults as well. A common childhood disease, juvenile diabetes, is prevalent in approximately one in every 400 to 500 children and adolescents, which is in a similar range of the ASDs. However, the ASDs are more common than childhood cancer, which has a prevalence rate of 1.5 per 10,000 children (1 in 300 males and 1 in 333 females have a probability of developing cancer by age 20 according to the National Cancer Institute).

    CDC has formed the Autism and Developmental Disabilities Monitoring (ADDM) Network in an effort to better understand the ASDs in the US.The purpose of this project is to establish an ongoing system for better understanding the magnitude and characteristics of the population of children with an ASD 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 Childrens 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.

    Special Education EligibilityAs with the 2000 data the prevalence based on the ADDM methods were higher in all states (blue diamond) versus the prevalnce estimates based on previous document classification

    The percentage of ASD cases receiving special education services through public schools was determined for the ten sites with full access to school records. This percentage was above 60% in all sites and above 80% in eight of the ten sites (Table 4). The percentage of cases receiving special education services with an Autism classification was considerably lower and ranged from 30.5% (CO) to 73.8% (MD) (Table 4).Previously Documented Classification of ASDChildren with a previously documented ASD classification included those who received special education services under an Autism special education exceptionality category and/or those with a diagnosis of ASD documented in their health or school records. In all sites, the estimated prevalence based on having a previous diagnosis of ASD was lower than that based on the ADDM Network Surveillance methodology (Figure 3). What are our key findings from the ADDM network:

    Activities in the Division of Birth Defects and Developmental Disabilities use the public health model. Surveillance of BD/DD feeds into research into particular birth defects and their etiologies. When a cause of a particular defect is identified through research, it can be intervened upon through prevention activities. The cycle continues, as the birth defects surveillance systems are critical in evaluating the effectiveness of birth defect prevention programs.

    A example that would fit into this cycle is folic acid for the prevention of neural tube defects. Rates of NTDs have been monitored by surveillance programs for many years. The lack of sufficient folic acid was identified as contributing to neural tube defects through several studies, and it was estimated that folic acid use may prevent 50-70% of all NTDs. Fortification of the U.S. grain supply with folic acid, as well as nationwide folic acid education programs, have led to a 26% decline in the neural tube defects spina bifida and anencephaly. This decline was detected using birth defects surveillance programs.Activities in the Division of Birth Defects and Developmental Disabilities use the public health model. Surveillance of BD/DD feeds into research into particular birth defects and their etiologies. When a cause of a particular defect is identified through research, it can be intervened upon through prevention activities. The cycle continues, as the birth defects surveillance systems are critical in evaluating the effectiveness of birth defect prevention programs.

    A example that would fit into this cycle is folic acid for the prevention of neural tube defects. Rates of NTDs have been monitored by surveillance programs for many years. The lack of sufficient folic acid was identified as contributing to neural tube defects through several studies, and it was estimated that folic acid use may prevent 50-70% of all NTDs. Fortification of the U.S. grain supply with folic acid, as well as nationwide folic acid education programs, have led to a 26% decline in the neural tube defects spina bifida and anencephaly. This decline was detected using birth defects surveillance programs.


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