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TABLE 3

Milestones in the Diagnostic Process Derived From Diagnostic Odyssey Interview Data by Parent-Report

WUSTL (N = 191), %Emory (N = 140), %UCLA (N = 121), %Einstein (N = 65), %All Sites (N = 517), %Across Site Comparison χ2Mean ADI-R Social (Verbal Subjects)aMean ADI-R RRB (Verbal Subjects)bVerbal v. Nonverbal Subjects χ2c
Required 3–5 visits to professionals 27.7 27.9 23.0 31.3 27.1 NS NS NS NS 
Required ≥6 visits to professionals 22.5 12.1 5.7 12.5 14.5 P < .001 NS NS NS 
Experienced a significant wait time to see a professional 36.6 42.1 30.6 27.7 35.6 NS NS NS NS 
Costs associated with the evaluation and diagnostic process 11.5 20.0 4.1 7.7 11.6 P < .001 NS 1; P < .04 Nonverbal = 4.4%; verbal = 13.6%; P < .01 
Lack of available places or professionals to receive an evaluation in their area 28.3 45.7 21.5 27.7 31.3 P < .001 NS 0.7; P < .02 NS 
Poor quality of the evaluation(s) 12.6 10.0 8.3 15.4 11.2 NS NS NS NS 
Scheduling conflicts between parent or caregiver and professionals 11.5 12.9 3.3 16.9 10.6 P < .01 NS NS NS 
Difficulties due to lack of transportation to appointments 6.8 3.6 2.5 15.4 6.0 P < .002 2.3; P < .05 1.1; P < .05 NS 
Difficulties with insurance coverage 11.5 16.4 4.1 9.2 10.8 P < .02 NS NS Nonverbal = 5.5%; verbal = 12.4%; P < .06 
WUSTL (N = 191), %Emory (N = 140), %UCLA (N = 121), %Einstein (N = 65), %All Sites (N = 517), %Across Site Comparison χ2Mean ADI-R Social (Verbal Subjects)aMean ADI-R RRB (Verbal Subjects)bVerbal v. Nonverbal Subjects χ2c
Required 3–5 visits to professionals 27.7 27.9 23.0 31.3 27.1 NS NS NS NS 
Required ≥6 visits to professionals 22.5 12.1 5.7 12.5 14.5 P < .001 NS NS NS 
Experienced a significant wait time to see a professional 36.6 42.1 30.6 27.7 35.6 NS NS NS NS 
Costs associated with the evaluation and diagnostic process 11.5 20.0 4.1 7.7 11.6 P < .001 NS 1; P < .04 Nonverbal = 4.4%; verbal = 13.6%; P < .01 
Lack of available places or professionals to receive an evaluation in their area 28.3 45.7 21.5 27.7 31.3 P < .001 NS 0.7; P < .02 NS 
Poor quality of the evaluation(s) 12.6 10.0 8.3 15.4 11.2 NS NS NS NS 
Scheduling conflicts between parent or caregiver and professionals 11.5 12.9 3.3 16.9 10.6 P < .01 NS NS NS 
Difficulties due to lack of transportation to appointments 6.8 3.6 2.5 15.4 6.0 P < .002 2.3; P < .05 1.1; P < .05 NS 
Difficulties with insurance coverage 11.5 16.4 4.1 9.2 10.8 P < .02 NS NS Nonverbal = 5.5%; verbal = 12.4%; P < .06 

For all individuals enrolled in the study, 40.4% of the sample had received a diagnosis of another condition before receiving their ASD diagnosis, and 14.7% of the children received their first ASD diagnosis as part of the research evaluation itself (mean age of diagnosis = 118.8 ± 70.1). The most common misdiagnosis was global developmental delay (40.7%), followed by attention-deficit/hyperactivity disorder (38.9%), and speech and language delay (12.4%). NS, not significant; RRB, restricted and repetitive behavior; WUSTL, Washington University in St. Louis.

a

Comparison of mean ADI-R social domain scores for subjects who endorsed experiencing specific barrier to care versus subjects who did not endorse barrier to care; t tests.

b

Comparison of mean ADI-R RRB domain scores for subjects who endorsed experiencing specific barrier to care versus subjects who did not endorse barrier to care; t tests.

c

Proportion of verbal versus nonverbal subjects who endorsed experiencing specific barrier to care; χ2.

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