1. Catherine Rice, PhD for the ADDM Network paper team*
Diagnostic Testing Practices for Autism Spectrum Disorder (ASD) in Four U.S. Communities
Catherine Rice, PhD
for the ADDM Network paper team*
International Meeting for Autism Research (IMFAR)
May 17, 2014
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

2. Autism and Developmental Disabilities (ADDM) Network collaborators
Laura Carpenter, PhD and Catherine Bradley, PhD
Medical University of South Carolina
Li-Ching Lee, PhD
Johns Hopkins University
Sydney Pettygrove, PhD
University of Arizona, Tucson
Michael Morrier, PhD, BCBA-D
Emory University
Nancy Hobson, PhD
ADDM Network Clinician Review
Lisa Wiggins, PhD and Jon Baio, EdS
Centers for Disease Control and Prevention (CDC)

3. Background and Objective
The use of validated assessment tools is a recommended professional practice when considering an autism spectrum disorder (ASD) diagnosis
Little research has characterized the use of these tools in community population samples
Objective: To characterize ASD test use in developmental evaluations in 4 U.S. communities

4. Examples of ASD Diagnostic Instruments for Children
Questionnaires by Parents or Teachers
Autism Behavior Checklist – ABC
Gilliam Autism Rating Scale – GARS
Asperger Syndrome Diagnostic Scale - ASDS
2) Structured Caregiver Interview
Autism Diagnostic Interview - ADI-R
Parent Interview for Autism – PIA
3) Clinician Ratings from Observations
Childhood Autism Rating Scale – CARS II
Autism Diagnostic Observation Schedule – ADOS-2

5. Methods Autism and Developmental Disabilities Monitoring (ADDM) Network
Collaborative effort in multiple areas of US to
Estimate prevalence among
8-year-old children
Characterize the ASD population
Describe variation by over time

6. Methods Four ADDM Network sites in United States
Areas of Arizona, Georgia, Maryland, and South Carolina
Children 8-years-old in 2008 identifed from abstraction and clinician review of developmental evaluation records from multiple community education and health sources
Information on evaluation source and content (ASD tests)
N = 1,708 children met ADDM Network criteria for ASD
Based on DSM-IV-TR criteria for autistic disorder or PDD
84% male; 16% female
53% white; 26% black, 12% Hispanic, 9% other or unknown
Descriptive statistics were used to describe the frequency and types of ASD tests documented in developmental evaluation records and type of community professionals who administered the tests. Chi-square analyses were used to assess differences in ASD test use by surveillance site (i.e., AZ, GA, MD, and SC), child sex, child race/ethnicity, and record type (i.e., education or health).

7. ASD Tests Documented in Evaluation Records
Asperger Syndrome Diagnostic Interview (ASDI) Asperger Syndrome Diagnostic Scale (ASDS) Australian Scale for Asperger’s Syndrome Autism Assessment Pragmatic & Nonverbal Behavior Checklist (GA) Autism Behavior Checklist (ABC) Autism Developmental History Interview (site specific / SC) Autism Diagnostic Interview Autism Diagnostic Interview-Revised (ADI-R) Autism Diagnostic Observation Schedule (ADOS, ADOS-G) Autism Screening Instrument for Educational Planning (ASIEP) (subtests other than ABC) Autism Screening Instrument for Educ Planning – 2nd Ed (ASIEP-2) (subtests other than ABC) Autism Screening Questionnaire (ASQ) Autism Social & Developmental History Form (site specific / NC) Autism Spectrum Behavioral Checklist Scale (site specific / PA) Autism Spectrum Disorder Interview (site specific / SC) Autism Spectrum Screening Questionnaire (ASSQ) Autism Spectrum Rating Scale (ASRS Autism Treatment Evaluation Checklist (ATEC) Autistic Disorder Checklist (site specific / SC) Checklist for Autism in Toddlers (CHAT) Checklist for Autism in Young Children (site specific / AL) Child Symptom Inventory-4 Childhood Asperger Syndrome Test (CAST) Childhood Autism Rating Scale (CARS) Childhood Autism Rating Scale-2nd Edition (CARS2) Children’s Atypical Development Scale (CADS) Develop. Behavior Checklist – Autism Screening Algorithm (DBC-ASA) Devereux Scales of Mental Disorders / Critical Pathology Disorders Diagnostic Interview for Social & Commun. Disorders (DISCO) Diagnostic Worksheet for PDD (site specific / MD) Direct Observation Checklist: Autism Spectrum Disorders DSM-IV Checklist, Autism Specific (any variation; site specific) Early Childhood Inventory-4 Gilliam Asperger’s Diagnostic Scale (GADS) Gilliam Autism Rating Scale (GARS) Gilliam Autism Rating Scale-2nd Ed (GARS-2) (use GARS on drop-down) High Functioning Autism Checklist (site specific / NC) High Functioning Autism Spectrum Screening Questionnaire (ASSQ) Krug Asperger’s Disorder Index (KADI) Monteiro Interview Guidelines for Diagnosing Asperger’s Syndrome (MIGDAS) Modified Checklist for Autism in Toddlers (M-CHAT) Parent Interview for Autism (PIA), PIA Clinical Version (PIA-CV) PDD Behavior Inventory (PDDBI) Pervasive Dev Disorders Screening Test-II (PDDST-II) Pre-Linguistic ADOS (PL-ADOS) Preschool Autism Rating Scale Repetitive Behavior Scale (RBS) Repetitive Behavior Scale-Revised (RBS-R) Screening Tool for Autism in 2 Year Olds (STAT) “Semi-structured clinical interview” (site specific / AL) “Semi-structured interview” (site specific / GA) “Semi-structured observation schedule” (site specific / GA) Social Communication Questionnaire (SCQ) Social Responsiveness Scale / Social Reciprocity Scale Symptom Checklist for PDD (site specific/ GA) Systematic Observation of Red Flags (SORF) TEACCH Functional Abilities Scale The Screening Test for Autism in Two Year Olds (STAT) OTHER

8. Results
76.2% of the 1,708 children with ASD had at least one ASD test documented in evaluation records for 2008
Up from 56.4% in these sites in 2000
Mean = 2.7 ASD tests per child
Evaluations with ASD tests were administered between 9 and 107 months of age with a median of 70 months

9. Results: Site Variation
Sites varied in the proportion of children with ASD with at least one ASD test
(χ2=55.85, p<0.001)
Across all sites, ASD tests were more frequently administered in education settings (60.0%) than health settings (37.8%) (p<0.001) (2.2% source unknown)

10. Results: Demographic Differences in ASD Test Use
ASD tests were more frequently administered to boys identified with ASD (77.1%) compared to girls (71.1%) (p<0.05)
There were group differences by race and ethnicity of the proportion of children evaluated by an ASD test (p<0.001):
Asian or Pacific Islanders (81.6%);
black, non-Hispanics (80.0%);
white non-Hispanics (75.7%);
Hispanic children (65.0%)

11. Results: Who Administers ASD Tests?
Proportion of professionals administering all ASD tests (N=4,284)

12. Results: Which ASD Tests Were Used?
N=4,284 ASD tests administered

13. Conclusions
Three-quarters of children identified with ASD were evaluated using an ASD test
Very few were administered “gold-standard” tools (the ADOS and ADI-R) in community health and education settings.
Testing practices varied by site.
ASD tests were administered more frequently to boys than girls, and least frequently to Hispanic children.
ASD tests were also administered more frequently in education settings and by Educational Psychologists.
These results highlight the need for
Consideration of how ASD assessment tools are used in community practice
Accessibility
Utility (diagnosis or eligibility)
Validity

14. Thank you! crice@cdc.gov For more information: www.cdc.gov/autism
For more information please contact Centers for Disease Control and Prevention
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Telephone: CDC-INFO ( )/TTY:
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The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention