Brief report: independent validation of autism spectrum disorder case status in the Utah Autism and Developmental Disabilities Monitoring (ADDM) Network Site.

Utah’s ADDM team wanted to know if their routine record review really catches kids with autism. They pulled a sample of existing case files and sent them to outside autism experts who had never seen the kids.

The outside clinicians looked at the same records and gave a yes-or-no autism call. Then the team compared the two sets of decisions to see how often they matched.

The outside experts agreed with Utah’s ADDM call almost every time. High agreement means the surveillance system labels the right kids as having ASD and does not miss many who do.

Lotfizadeh et al. (2020) tried to spot ASD using only billing codes and hospital tags. Their method failed; many kids were wrongly labeled. Worsham et al. (2015) shows that careful record review works, while cheap admin codes do not.

Taylor et al. (2017) watched short ADOS videos and found poor agreement among clinicians. That looks like a clash, but it is not. ADDM uses thick school-medical files, not one short video, so the high match here makes sense.

Prigge et al. (2013) proved that adding early-intervention and university records catches toddlers the usual CDC review misses. Worsham et al. (2015) confirms that once those extra records are in, the final yes-no call is trustworthy.

If you rely on state or school data for caseload planning, you can trust Utah-style ADDM files. Push your district to include early-intervention and university reports; the extra papers boost both sensitivity and accuracy. When you see a file stamped ASD, you know the label is solid without needing a fresh full ADOS.