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 χ2 . | Mean ADI-R Social (Verbal Subjects)a . | Mean ADI-R RRB (Verbal Subjects)b . | Verbal 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 χ2 . | Mean ADI-R Social (Verbal Subjects)a . | Mean ADI-R RRB (Verbal Subjects)b . | Verbal 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.
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.
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.
Proportion of verbal versus nonverbal subjects who endorsed experiencing specific barrier to care; χ2.