My son also has 1q21 duplication, with similar challenges as yours. We just participated in a research study through Simons VIP that provided the most helpful battery of tests regarding autism, intelligence psychological and motor development. All expenses were paid for -- including travel meals and stipend for every member of my family. It was the only time we have ever had input and feedback from doctors and therapists who have ever encountered this particular rare genetic disorder.
Fortunately, my son's symptoms are comparatively mild. He's 4 1/2 now, but has received special services for his learning delays since he was one. He is in a special need preschool now and we are hopeful he will be mainstreamed in 1st grade. He's quite intelligent, does not have autism, but struggles with fine motor, speech articulation, and impulse control. Hang in there!!