2008 A2008 AUTISMUTISM S SPECTRUMPECTRUM D DISORDERSISORDERS PPREVALENCEREVALENCE R RESULTSESULTS

OverviewOverview

• Describe what autism is

• Describe the Autism and Developmental Disabilities Monitoring (ADDM) Network and its methodology

• Present the 2008 results

• Present surveillance trends for Arapahoe County

What is Autism?What is Autism?

• A group of developmental disabilities that cause significant social, communication and behavioral challenges over a lifetime.

• Can range from mild to severe.

* CDC Slide* CDC Slide

ADDM NADDM NETWORKETWORK M METHODSETHODS

• Active case-finding with broad retrospective records-based screening for ASD classifications or behaviors.

• Focus on children at age 8 to identify peak prevalence.

• Multiple health and education sources of information.

• Detailed behavioral, developmental, and testing information collected.

• Ongoing quality control within and across sites.

• Independent review and clinician confirmation of ASD case status based on the DSM-IV criteria.

• Standard for setting ASD prevalence estimates in the U.S.

* CDC Slide* CDC Slide

CCOLORADOOLORADO M MONITORINGONITORING P PROJECTROJECT

• Goal: Determine the prevalence of autism spectrum disorders (ASD) among children who were 8 years of age in 2008.

• Denver Metropolitan area: Adams, Arapahoe, Boulder, Broomfield, Denver, Douglas, and Jefferson counties

• “Complete participation”: Areas with both health sources and school district participation– 2002: Arapahoe and Boulder counties– 2006 and 2008: Arapahoe county

• “Incomplete participation”:- 2008: Adams, Boulder, Broomfield, Denver, Douglas, and Jefferson counties

Permission to Access RecordsPermission to Access Records

• Health care facilities: – ASD is a reportable public health condition

• Children < 10 years of age with confirmed or suspected ASD identified by health facilities in the Denver Metropolitan area are reportable to the Colorado Department of Public Health and Environment.

• Schools: – Individual agreements were developed with

each participating school district and/or IRB approvals.

• Lisa Miller, MD, MSPH• Andria Ratchford, MSPH

(Project Coordinator)• Jean Menconi, RN

(Abstractor)• Vicki Bondurant (Abstractor)• Stephanie Comienski

(Abstractor)• Beverly Meek (Abstractor)• Kevin Hake (Data Manager)

2006 2006 ANDAND 2008 2008 CCOLORADOOLORADO ADDM ADDM

• Corry Robinson, PhD, RN• Judy Reaven, PhD

(Expert Reviewer)• Terry Hall, MA, CCC-SLP

(Expert Reviewer)• Andrea Hoog

(Expert reviewer)

• Gina Quintana• Yolanda Castillo, MBA

(Project Coordinator)• Gabriela Perez (Abstractor)

RRESULTSESULTS2008 8 year olds2008 8 year olds

2008 COLORADO POPULATION 2008 COLORADO POPULATION CCHARACTERISTICSHARACTERISTICS

Arapahoe county

6-county Denver area

Population Characteristics N % N %

Total 8 year-old Population in 2008 7,725 29,336

White, Non-Hispanic 3,990 51.7 16,923 57.7

Black, Non-Hispanic 1,051 13.6 1,390 4.7

American Indian/Alaskan Native,

Non-Hispanic

64 0.8 184 0.6

Asian, Non-Hispanic 387 5.0 1,179 4.0

Hispanic (regardless of race) 2,233 28.9 9,660 32.9

Source CharacteristicsSource Characteristics

• Arapahoe County source types– School: 19%

– Health: 22%

– Both: 59%

• Denver metro area source types– Health: 100%

ADDM NADDM NETWORKETWORK 2008 2008 ASD estimated prevalence per 1,000 persons ASD estimated prevalence per 1,000 persons

among 8-year-old childrenamong 8-year-old children

Surveillance Year

Birth Year # sites

8-year-old Population

8-year-olds with an ASD

Avg Prev/1000

Range

2000 1992 6 187,761 1,2526.7

4.5-9.9

2002 1994 14 407,578 2,6856.6

3.3-10.6

2004 1996 8 172,335 1,3768.0

4.6-9.8

2006 1998 11 308,038 2,7599.0

4.2-12.1

2008 2000 14 337,093 3,82011.3

4.8 – 21.2

ADDM NADDM NETWORKETWORK O OVERALLVERALL

ASD Estimated Prevalence, 2000-2008ASD Estimated Prevalence, 2000-2008

* modified CDC Slide* modified CDC Slide

ADDM NADDM NETWORKETWORK 2008 2008 Estimated Prevalence by SexEstimated Prevalence by Sex

ADDM network Arapahoe County

Males 18.4 per 1,000 (1 in 54) 20.1 per 1,000 (1 in 50)

Females 4.0 per 1,000 (1 in 250) 2.9 per 1,000 (1 in 345)

Male to female ratio almost 5 boys to every 1 girl 7 boys to every 1 girl

ADDM NETWORK 2008 ADDM NETWORK 2008 Estimated Prevalence per 1,000 Estimated Prevalence per 1,000

by Race /Ethnicityby Race /Ethnicity

ADDM Network Arapahoe County

Average rate Range Rate 95% CI

White, non-Hispanic 12.0 4.6 - 40.0 14.8 11.5 - 19.1

Black, non-Hispanic 10.2 3.0 - 25.9 10.5 5.8 - 18.9

Hispanic 7.9 1.4 - 20.0 6.7 4.1 - 11.1

Associated Features of ASD Associated Features of ASD Cases, Arapahoe County, 2008Cases, Arapahoe County, 2008

ASSOCIATED FEATURE N Percent

Abnormality in eating/drinking 53 58.2

Abnormality in sleeping 35 38.5

Abnormality in mood/affect 77 84.6

Abnormality in cognitive skills 37 40.7

Aggression 50 54.9Argumentative, defiant, oppositional

75 82.4

Delayed motor functioning 74 81.3

Hyperactivity, attention problems 87 95.6

Lack of fear or excessive fear 46 50.5

Odd response to sensory stimuli 73 80.2

Self-injurious behavior 30 33.0

Staring spells/seizure-like activity 22 24.2

Temper tantrums 46 50.5

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Estimated prevalence of ASDs by IQ,Estimated prevalence of ASDs by IQ,ADDM Network, 2008ADDM Network, 2008

Proportion estimated incidence by Proportion estimated incidence by IQ scores, Arapahoe County, 2008IQ scores, Arapahoe County, 2008

• 36% of all cases in Arapahoe County had an unknown IQ score

2002, 2006 and 2008 2002, 2006 and 2008 CCOMPARISONOMPARISON

Change in Estimated ASD Prevalence by Change in Estimated ASD Prevalence by Race/Ethnicity, Arapahoe County, 2008Race/Ethnicity, Arapahoe County, 2008

Pre

vale

nce

per

1,00

0 pe

rson

s

Change in ASD Prevalence from 2002 to Change in ASD Prevalence from 2002 to 2006 and 2006 and 2006 to 2008 by Cognitive Functioning Level, 2006 to 2008 by Cognitive Functioning Level,

ADDM NetworkADDM Network

Cognitive impairment

(IQ ≤ 70)Borderline (IQ = 71-85)

Average to above average

(IQ > 85)

Overall percent change*, 2002 to 2006

35 90 72

Overall percent change**, 2006 to 2008

12 23 13

* From MMWR December 18, 2009 / 58(SS10);1-20

** From MMWR / March 30, 2012 / Vol. 61 / No. 3

ARAPAHOE COUNTY: ARAPAHOE COUNTY: EEARLIESTARLIEST D DOCUMENTEDOCUMENTED D DIAGNOSISIAGNOSIS

Earliest ASD Diagnosis in an Evaluation

20022002 20062006 20082008

Median Age 62

months60

months54

months

ADDM Network Summary of ADDM Network Summary of Findings, 2008 Findings, 2008

• Estimated prevalence of ASDs continues to rise in most ADDM Network communities, including Arapahoe County

• Average prevalence of ASDs > 1% of 8-year-olds• Average = 1 in 88 eight-year-old (1 in 85 in Arapahoe County)• 23% increase, 2006-2008• 78% increase, 2002-2008

• Estimated prevalence of ASDs varies widely– Across sites– By sex– By race/ethnicity

*Modified CDC Slide*Modified CDC Slide

GGENERALENERAL I ISSUESSSUES: W: WHYHY ISIS THETHE IDENTIFIEDIDENTIFIED PREVALENCEPREVALENCE OFOF ASD ASD RISINGRISING??

• Changes in diagnostic criteria over time• Increased awareness in the community • Changes in availability of services

• Parents as advocates• Development of specialty services• Training of professionals

• Recognition that ASDs can occur with severe ID, higher intellectual functioning, and other medical and psychiatric disorders

• True increase in symptoms in the population• Increased risk due to environmental and/or genetic factors

*CDC Slide*CDC Slide

Extra Slides

ASD characteristicsASD characteristics• Measured intelligence

Severe-------------------------------------Gifted• Social interaction

Aloof----------------Passive-------------Active but odd• Communication

Nonverbal------------------------------------------Verbal• Behaviors

Intense-----------------------------------------------Mild• Sensory

Hyposensitve---------------------------Hypersensitive• Motor

Uncoordinated-----------------------------Coordinated

Slide courtesy of Catherine Rice, PhD

Percent of cases in special education and Percent of cases in special education and with an ASD classification, with an ASD classification,

ADDM Network, 2008ADDM Network, 2008

0

10

20

30

40

50

60

70

80

90

100

% in special education

% with ASD classification

Earliest Known ASD DiagnosisEarliest Known ASD DiagnosisMedian Age and Proportion by Diagnostic SubtypeMedian Age and Proportion by Diagnostic Subtype

ADDM Network and Arapahoe County, 2008ADDM Network and Arapahoe County, 2008

Subtype of Earliest Diagnosis:

Autistic Disorder

ASD/PDDAsperger Disorder

Distribution of subtypes,

ADDM Network:44% 47% 9%

Median age of earliest diagnosis,

ADDM Network:48 months 53 months 75 months

Distribution of subtypes, Arapahoe County 46% 40% 14%

Median age of earliest diagnosis,

Arapahoe County52 months 54 months 79 months

Percent of Children with ASD by Percent of Children with ASD by Primary Education Eligibility Category, Primary Education Eligibility Category,

Arapahoe County 2008Arapahoe County 2008

Primary Exceptionality PercentAutism 39.0Emotional disturbance 2.6Speech/Language Disability 19.5Other Physical Disability 27.3Multiple Disabilities with Cognitive Impairment 7.8

Intellectual disability 3.9

• 84.6% of all children were receiving Special Education services

Change in Estimated ASD Prevalence Change in Estimated ASD Prevalence by Sex, Arapahoe County, 2008by Sex, Arapahoe County, 2008

Pre

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0 pe

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Study year

ADDM NetworkImplications of Findings

• ASDs continue to be an important public health concern– ~1 million children with ASDs in the United States

• Better identification among certain subgroups

• More children than ever are being recognized as having an ASD– Many may not be recognized as early as they can be

* Modified CDC Slide* Modified CDC Slide

Estimated ASD prevalence among 8-year-olds, by Estimated ASD prevalence among 8-year-olds, by access to education records and population size access to education records and population size

covered, ADDM Network, 2008 covered, ADDM Network, 2008

MMWR / March 30, 2012 / Vol. 61 / No. 3

Proportion of children identified with ASDs by Proportion of children identified with ASDs by previous ASD classification as of age 8 years, by state previous ASD classification as of age 8 years, by state

and year, ADDM Network, 2008and year, ADDM Network, 2008

MMWR / March 30, 2012 / Vol. 61 / No. 3

Change in Estimated ASD Prevalence per 1,000 Children by Change in Estimated ASD Prevalence per 1,000 Children by Cognitive Functioning Level – ADDM Network, 7 SCognitive Functioning Level – ADDM Network, 7 SITESITES, ,

2002 to 20082002 to 2008

*CDC Slide*CDC Slide

Previous diagnosis, ADDM Network, 2008

• 79% of cases had a previously documented ASD classification

• Range: 67% (Arapahoe County)–87% (Pennsylvania and Wisconsin).

• In Arapahoe County, – 67% had an previous ASD diagnosis

– 11% had a suspicion of ASD noted

– 22% had no mention of ASD noted

Number of Records ScreenedNumber of Records Screened

• Denver Metro Area Records Reviewed ~ 3,019– Number of records abstracted = 546

• Arapahoe County Records Reviewed ~1,282– Number of records abstracted = 177– 5 of 5 districts participated