Catherine Lord, who is one of my idols in this area, who was at the University of Michigan at the time, developed the clinical protocol for evaluation of the SSC. She taught all of the clinicians from each center. Each of the 12 centers came to Michigan and were trained and were videotaped and were re-evaluated periodically, every few months, to make sure that their skills were still sharp. It paid off. There was one paper published after the collection was complete, which compared scores on these tests across the 12 different sites, and they are remarkably close. It's shocking how accurate they were. The only variant was the leadership of each program, who was in charge of giving the syndrome a name. Some called it autism, some called it Asperger's, some called it benign progressive developmental disorder. Everybody had a different name for the same thing and that study was the key to saying how people should come together and understand better what the syndrome is.
That SSC, I just looked at it before I came today, is still in active use with several cases every month being requested from the Simons Foundation for data.