Autism Spectrum Disorders Surveillance Summary, Denver Metropolitan Area, 2012
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Autism Spectrum Disorders
Surveillance Summary,
Denver Metropolitan Area, 2012
Report from the Colorado Autism and Developmental
Disabilities Monitoring Project
Questions or comments:
Kelly R. Kast, MSPH
Coordinator, Autism Projects
Colorado Department of Public Health and Environment
4300 Cherry Creek South Drive
Denver, CO 80246
Phone: 303-692-2680
Email: kelly.kast@state.co.usTable of Contents
• Executive summary …………………………………………………………………. Page 3
• Introduction and methods …………………………………………………………….Page 4
• Summary of ADDM surveillance results for the Denver Metropolitan Area.……… Page 5
o Demographics
o Intellectual ability
o Adaptive behavior
o Regression and plateau in development
o Diagnostic behaviors
o Associated behaviors
o Previously documented ASD diagnosis
o Age of evaluation
• Overall conclusions and next steps ………………………………………………… Page 9
• Literature cited…..………………………………………………………………….. Page 10
Colorado Autism and Developmental Disabilities Monitoring Project
2012 Monitoring Year Report, June 2017 Page
2 Page 2Executive Summary Autism spectrum disorder (ASD) is a behaviorally defined neurodevelopmental disorder characterized by social communication impairments and repetitive and restrictive behaviors and interests. The Colorado Autism and Developmental Disabilities Monitoring (CO ADDM) Project at the Colorado Department of Public Health and Environment is a surveillance project funded by the Centers for Disease Control and Prevention (CDC) and part of the Autism and Developmental Disabilities Monitoring (ADDM) Network. Its primary objective is to determine the prevalence of ASD among 8- year-old residents in the seven counties of the Denver Metropolitan Area – Adams, Arapahoe, Boulder, Broomfield, Denver, Douglas, and Jefferson Counties. Prevalence is monitored every two years. The monitoring process consists of two phases. The first phase involves screening and abstraction of evaluations from qualified examiners at health facilities and school districts for children with ASD- like behaviors. In the second phase, all abstracted evaluations are compiled and reviewed by specially-trained clinicians to determine ASD case status. A child meets the ASD case definition if he or she displays behaviors consistent with diagnostic criteria from the American Psychiatric Association's Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) for ASD. The following are key findings from the CO ADDM Project for the 2012 monitoring year for the Denver Metropolitan Area. 1. The proportion of 8-year-old children identified with ASD remained similar in 2012 compared with same area in 2010 (10.8 per 1,000 (n=436) compared with 9.9 per 1,000 (n=384)). 2. The prevalence of ASD is not the same among all racial and ethnic groups. It was significantly lower among Hispanic children (6.5 per 1,000) compared with non-Hispanic, white children (12.2 per 1,000). 3. Most children with ASD, who had cognitive testing information available, did not have an intellectual disability (76.3%, n=239). Intellectual disability is defined as an IQ (intelligence quotient) test score of 70 or less, or an examiner’s report of intellectual disability. 4. Among the children identified with ASD, only 40.6% (n=131) received a comprehensive developmental evaluation before 3 years of age, which is below the Healthy People 2020 objective. 5. Not all children are diagnosed or identified with ASD by a community provider or school district. Approximately 32.3% (n=141) of children meeting the ASD case definition had not been diagnosed or identified with ASD by the time they were 8 years of age in 2012. Further study is needed to develop programs to understand and address racial and ethnic differences, determine ways to improve the early evaluation of children with ASD, and identify barriers to the diagnosis of ASD by age 8. Colorado Autism and Developmental Disabilities Monitoring Project 2012 Monitoring Year Report, June 2017 Page 3 Page 3
Introduction and methods Autism spectrum disorder (ASD) is a behaviorally defined neurodevelopmental disorder characterized by social communication impairments and repetitive and restrictive behaviors and interests. The Autism and Developmental Disabilities Monitoring (ADDM) Network is a surveillance system funded by the Centers for Disease Control and Prevention (CDC) with the primary objective of estimating the prevalence of ASD among surveillance sites. Prevalence is monitored every two years. The data in this report reflect findings from 2012. The ADDM Network surveillance methods are fully described in a previously published report (1). The ADDM Network does not rely on the reporting of an existing ASD diagnosis to determine case status. Instead, information is obtained from children’s evaluation records to determine the presence of ASD behaviors at any time from birth through 8 years of age. The surveillance process consists of two phases. The first phase involves screening and abstraction of evaluations from qualified examiners at health facilities and school districts for children with ASD-like behaviors. Examples of qualified examiners include developmental pediatricians, speech-language pathologists, psychologists, and occupational therapists. During the second phase, the abstracted evaluations are compiled and reviewed by specially-trained clinicians to determine ASD case status. A child meets the ASD case definition if he or she displays behaviors consistent with diagnostic criteria from the American Psychiatric Association's Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) for any of the following conditions: autistic disorder; Asperger disorder; or pervasive developmental disorder–not otherwise specified (PDD-NOS), including atypical autism. In 2013 the American Psychiatric Association published an updated version of the Diagnostic and Statistical Manual for Mental Diseases. Because this 5th edition was not published until 2013, information in children’s records, and thus the ADDM Network case definition, will be in line with the DSM-IV-TR until that time. As part of the ADDM Network, the Colorado Autism and Developmental Disabilities Monitoring (CO ADDM) Project conducts ASD surveillance in the seven-county Denver Metropolitan Area, which includes Adams, Arapahoe, Boulder, Broomfield, Denver, Douglas, and Jefferson Counties. It follows the ADDM Network surveillance guidelines. The Colorado Department of Public Health and Environment (CDPHE) directs the overall activities of the CO ADDM Project and collects data during the first phase of the surveillance process. JFK Partners at the University of Colorado Denver provides clinical expertise and determines case status during the second phase. Population denominators for calculating ASD prevalence estimates were obtained from the CDC's National Center for Health Statistics (NCHS) vintage 2014 postcensal bridged-race population estimates for 2012. 95% confidence intervals (CIs) for prevalence estimates were derived under the assumption that the observed counts of children identified with ASD are random variables drawn from an underlying Poisson distribution. Differences in percent distribution were assessed by chi- square analysis and tests of the median were performed by a Wilcoxon-Mann-Whitney two-sample median test. A maximum value of p
Denver Metropolitan Area:
Summary of autism spectrum disorder surveillance
In the seven counties of the Denver Metropolitan Area – Adams, Arapahoe, Boulder, Broomfield,
Denver, Douglas, and Jefferson Counties – 436 children aged 8 years were identified from health and
education sources as meeting the ADDM Network case definition for ASD in 2012. The prevalence was
10.8 children with ASD per 1,000 8-year-old children. This represents an approximately 9% increase,
though not significant, from 2010 when the prevalence was 9.9 per 1,000 8-year-old children. The
following is a summary of demographic and clinical characteristics of 8-year-old children identified
with ASD in 2012.
Demographic characteristics
Table 1 shows the demographic characteristics of children meeting the ASD case definition in the
Denver metropolitan area, where 62.8% of ASD cases were non-Hispanic white, 6.0% non-Hispanic
black and 20.0% Hispanic. The prevalence of ASD was lower among Hispanic children when compared
with non-Hispanic white children. The majority of cases, 81.0%, were male.
Table 1: Prevalence of autism spectrum disorder by sex and race/ethnicity in the Denver
Metropolitan Area, Colorado Autism and Developmental Disabilities Monitoring Project, 2012
Total 8-yo ASD Prevalence/1000
population Percent cases Percent (CI)
7-county Denver
40,538 -- 436 -- 10.8 (9.8-11.8)
metropolitan area
Sex
Females 83 19.0% 4.2 (3.4-5.2)
Males 353 81.0% 17.1 (15.4-19.0)
Race/ethnicity
White, non-Hispanic 22,370 55.2% 274 62.8% 12.2 (10.9-13.8)
Black, non-Hispanic 2,469 6.1% 26 6.0% 10.5 (7.2-15.1)
Asian/Pacific
2,029 5.0% 17 3.9% 8.4 (5.2-13.5)
Islander
Hispanic, all races 13,448 33.2% 87 20.0% 6.5 (5.2-8.0)
Other or unknown -- -- 32 7.3% --
Intellectual ability
The CO ADDM Project reports a child’s intellectual ability using standardized test scores or clinician
report of intellectual ability. The majority of the 8-year-old children identified with ASD in the
metropolitan area, 71.8%, had intellectual testing information available. Among these children, the
median age of testing was 70 months, ranging from 9 to 106 months. Figure 1 illustrates the
proportion of all children meeting the ASD case definition by intellectual ability. Of the 313 cases
with testing information available:
• 23.6% (n=74) were categorized in the range of intellectual disability (intelligence quotient
(IQ) test score of 70 or less or clinician report of intellectual disability)
• 24.9% (n=78) had borderline IQ scores (scores between 71 and 85)
• 51.4% (n=161) had average or above IQ scores (scores greater than 85)
Colorado Autism and Developmental Disabilities Monitoring Project
2012 Monitoring Year Report, June 2017 Page
5 Page 5Figure 1: Proportion of all cases of autism spectrum disorder by intellectual ability, Denver
Metropolitan Area, Colorado Autism and Developmental Disabilities Project, 2012, (n=436)
Above average: IQ>115
No intellectual test 5.1% (n=22)
data available
27.8% (n=121)
Average: IQ 86-115
31.9% (n=139)
Intellectual disability not
otherwise specified
3.2% (n=14)
Moderate to profound
intellectual disability:
IQFigure 2: Proportion of all cases of autism spectrum disorder by intelligence quotient and
adaptive behavior test scores, Denver Metropolitan Area, Colorado Autism and Developmental
Disabilities Project, 2012, (n=436)
Adaptive behavior > 70, IQ > 70
20.6% (n=90)
Adaptive behavior > 70,
IQ ≤ 70, 3.2% (n=14)
No Adaptive test
information availabe
57.6% (n=251)
Adaptive behavior > 70,
IQ missing, 1.1% (n=5)
Adaptive behavior ≤ 70,
IQ ≤ 70, 8.7% (n=38)
Adaptive behavior ≤ 70, IQ > 70
5.7% (n=25)
Adaptive behavior ≤ 70, IQ missing
3.0% (n=13)
Regression and plateau in development
Some children who met the ASD case definition experienced a plateau or regression in development.
Plateau is where a child began to reach developmental milestones, such as language, motor, social,
or daily living skills, but then stopped acquiring new skills. Plateau affected 3.0% (n=13) of the 8-
year-old children identified with ASD. Regression is where previously acquired skills are lost and
affected 12.6% (n=55) of children identified with ASD.
Diagnostic behaviors
To meet the case definition for ASD, a child needed to display, as described on a comprehensive
evaluation by a qualified examiner, a certain number and pattern of behaviors within three
behavioral domains – social, communication, and repetitive/restrictive behavior – as described in the
DSM-IV-TR diagnostic code. The monitoring system does not differentiate between the ASD subtypes –
autistic disorder, Asperger disorder, and pervasive developmental disorder, not otherwise specified
(PDD-NOS). Table 2 lists the percent of children meeting the ASD case definition who displayed each
of the 12 DSM-IV-TR diagnostic criteria.
Colorado Autism and Developmental Disabilities Monitoring Project
2012 Monitoring Year Report, June 2017 Page
7 Page 7Table 2: Proportion of autism spectrum disorder cases meeting Diagnostic Statistical Manual-IV,
Text Revision criteria, Denver Metropolitan Area, Colorado Autism and Developmental Disability
Monitoring Project, 2012, (n=436)
Number Percent
Social impairments
DSM1a – Marked impairment in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body postures, and gestures 396 90.8%
to regulate social interaction
DSM1b - Failure to develop peer relationships appropriate to
322 73.9%
developmental level
DSM1c - A lack of spontaneous seeking to share enjoyment, interests,
or achievements with other people (for example, by a lack of showing, 271 62.2%
bringing, or pointing out objects of interest)
DSM1d - Lack of social or emotional reciprocity 396 90.8%
Communication impairments
DSM2a - Delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative 377 86.5%
modes of communication such as gesture or mime)
DSM2b - In individuals with adequate speech, marked impairment in
382 87.6%
the ability to initiate or sustain a conversation with others
DSM2c - Stereotyped and repetitive use of language or idiosyncratic
353 81.0%
language
DSM2d - Lack of varied, spontaneous make-believe play or social
271 62.2%
imitative play appropriate to developmental level
Behavioral impairments
DSM3a- Encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in intensity or 293 67.2%
focus
DSM3b - Apparently inflexible adherence to specific, nonfunctional
392 89.9%
routines or rituals
DSM3c - Stereotyped and repetitive motor mannerisms (e.g., hand or
307 70.4%
finger flapping or twisting or complex whole-body movements)
DSM3d - Persistent preoccupation with parts of objects 311 71.3%
More than half of the children meeting the case definition, 58.0% (n=253), exhibited 3 or more
diagnostic criteria in all three domains. The remaining 42.0% (n=183) exhibited variety in the types
and number of diagnostic behaviors in each domain. Thirty children meeting the case definition
(6.9%) had less than three behaviors in each of the three domains. The median number of diagnostic
criteria exhibited by children meeting the case definition was 10, with frequencies ranging from 2 to
12 (Figure 3).
Colorado Autism and Developmental Disabilities Monitoring Project
2012 Monitoring Year Report, June 2017 Page
8 Page 8Figure 3: Documented frequency of Diagnostic Statistical Manual-IV, Text Revision criteria for
autism spectrum disorder (ASD) cases, Denver Metropolitan Area, Colorado Autism and
Developmental Disability Monitoring Project, 2012, (n=436)
100
90
80
70
No. ASD Cases
60
50
40
30
20
10
0
2 3 4 5 6 7 8 9 10 11 12
No. of Documented ASD Diagnositc Criteria
Associated behaviors
Children with ASD also exhibit behaviors not related to the diagnosis of ASD, but common among
persons with ASD. The proportion of children who demonstrate these associated behaviors are shown
in Table 3. The median number of associated behaviors displayed by children meeting the ASD case
definition was 8, with frequencies ranging from 1 to 13 (Figure 4).
Table 3. Percent of autism spectrum disorder cases with associated behaviors, Denver
Metropolitan Area, Colorado Autism and Developmental Disabilities Monitoring Project, 2012,
(n=436)
Number Percent
Hyperactivity, attention deficits 391 89.7%
Delayed motor milestones 374 85.8%
Odd responses to sensory stimuli 373 85.6%
Abnormalities in mood or affect 378 86.7%
Abnormalities in eating 275 63.1%
Argumentative, oppositional, defiant, destructive 296 67.9%
Aggression 250 57.3%
Lack of fear or excessive fearfulness 217 49.8%
Temper tantrums 234 53.7%
Abnormalities in sleeping 224 51.4%
Abnormalities in the development of cognitive skills 215 49.3%
Self-injurious behavior 151 34.6%
Seizures/staring spells 90 20.6%
Colorado Autism and Developmental Disabilities Monitoring Project
2012 Monitoring Year Report, June 2017 Page
9 Page 9Figure 4: Documented frequency of associated behaviors for autism spectrum disorder (ASD) cases, Denver Metropolitan Area, Colorado Autism and Developmental Disability Monitoring Project, 2012, (n=436) Previously documented ASD diagnosis Although all children meeting the ASD case definition had behaviors described in comprehensive evaluations by a qualified examiner that were consistent with the DSM-IV-TR diagnostic criteria, not all had been diagnosed or identified with ASD by a community clinician or school district. Among all children meeting the ASD case definition, 67.7% (n=295) had a previously documented ASD diagnosis or identification. An additional 18.1% (n=79) had a suspicion of ASD noted in the medical or education record, but no diagnosis. The remaining 14.2% (n=62) had no mention of ASD in their records. Age of first evaluation The median age at which children were first evaluated for ASD-like behaviors was 3 years and 9 months. Although 86% (n = 375) of children identified with ASD had developmental concerns noted in their record by age 3, only 37.8% (n=165) were evaluated ≤ 36 months of age. This includes all children identified with ASD regardless of linkage to Colorado birth certificate. Colorado Autism and Developmental Disabilities Monitoring Project 2012 Monitoring Year Report, June 2017 Page 10 Page 10
Overall conclusions and next steps The CO ADDM Project monitored the prevalence of ASD in 2012 among 8-year-old children residing in the Denver metropolitan area (Adams, Arapahoe, Boulder, Broomfield, Denver, Douglas, and Jefferson Counties). It found that the proportion of children with ASD increased from 9.9 per 1,000 in 2010 to 10.8 per 1,000 in 2012. It also found that children meeting the ASD case definition demonstrated a variety of behaviors, as well as a range of cognitive and adaptive ability. Among all cases identified in the Denver metropolitan area, the prevalence of ASD was not the same among all racial and ethnic groups. Disparities in identification exist between Hispanic and non- Hispanic white children, with white children being 1.9 times more likely than Hispanic children to be identified with ASD. Further study is needed to understand this disparity and the possible role of culture in differences in practitioner behavior, access to a qualified specialist, and health care seeking actions concerning childhood behaviors. Among children identified with ASD, the proportion of children who were evaluated at or before 36 months was 36.2%. This is below the objective set in Health People 2020 which encourages 42.9% of children with ASD to be evaluated by 36 months (2). Programs at the CDC such as the “Learn the signs. Act early.” and “Birth to 5: Watch Me Thrive!” campaigns are aimed at improving the early identification and evaluation of children with developmental disabilities. Additionally, current Colorado programs such as Assuring Better Child Health and Development (ABCD) and Launch Together emphasize routine developmental screening for all children which is a positive step toward the goal of early evaluations for children with developmental concerns. Further study is needed to monitor and improve the early evaluation of children with ASD in Colorado. Approximately 65% of children meeting the ASD case definition were diagnosed with ASD by a community clinician by their 8th year of age. Although these children presented with complex and varying behaviors, further study is needed to better understand why some cases were diagnosed with ASD while others were not, and to characterize differences between these two groups. The children who met the ASD case definition were 8 years old in 2012 and are now, at the time of this report 12-13 years old. The data from this CO ADDM Project report provide a better understanding of the number and characteristics of children with ASD who are living and aging in Colorado. These children are diverse in their behaviors and abilities, leading to a variety of challenges and opportunities for their treatment and care. Particular study is needed to develop programs to understand and address racial and ethnic differences in prevalence, ways to improve and expand the early evaluation of children with ASD, and barriers to the diagnosis of ASD. More information about the ADDM Network, including the Network’s prevalence and community reports, can be found at the CDC’s website at www.cdc.gov/ncbddd/autism/addm.html. Colorado Autism and Developmental Disabilities Monitoring Project 2012 Monitoring Year Report, June 2017 Page 11 Page 11
Literature cited
1. Rice CE, Baio J, Van Naarden Braun K, Doernberg N, Meaney FJ, Kirby RS, for the ADDM
Network. A public health collaboration for the surveillance of autism spectrum disorders.
Paediatr Perinat Epidemiol 2007; 21:179-90
2. Maternal, Infant and Child Health Objective 29.2. (n.d.). In Healthy People 2020. Retrieved
from www.healthypeople.gov/2020/topicsobjectives2020/objectiveslist.aspx?topicId=26
Colorado Autism and Developmental Disabilities Monitoring Project
2012 Monitoring Year Report, June 2017 Page
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