Parents report noticing clumsiness and mobility problems in dim light and the dark.
They notice that their child has bicycle accidents and bumps into people frequently. Sometimes teachers notice that the child is missing signed communication and friends trying to get their attention. Many parents report very stressful experiences in dealing with the medical profession during the process of trying to determine what is wrong with their child. Some children are mis-diagnosed or the parent's perceptions are not taken seriously. When they are finally given an accurate diagnosis, it is often brusque and without further referral or connection to support services.