Clark, Phil and I left the house this morning at 9:15 to go to the Center for Human Development and Disabilities in back of University Hospital (University of Washington Medical Center), the very place where Clark was diagnosed with mental retardation when he was five and Phil a few years later. It wasn’t until Clark was 11 and Phil was 5 that they were diagnosed with fragile X syndrome, inherited mental retardation. This morning each had a toasted scrambled-egg sandwich which they ate on their way to their last appointment for an Eye Gaze Study. We always enjoy an excursion together so there was much excited talking with church music playing (Philip’s choice) in the background. This study is concentrating on discovering the relation between brain functioning and eye gaze in individuals with fragile X syndrome. Phil definitely has eye aversion which is often seen in individuals with autism. This project will allow a research team to examine differences in social skills and brain activity in a study using behavioral tests and EEG measures of brain functioning.
As I sat in the waiting room I could at times hear both Clark and Phil interacting with their different research assistants. Both exhibited some nervousness and yet would probably deny feeling anxious or nervous. Clark talks almost nonstop and starts with “I can run fast.” If he senses any interest he tells about the time he beat the person in the wheelchair. He has told this story (which I doubt since I never observed it) many times and realizes it usually brings a laugh. I noticed that when he repeated how fast he can run for the umpteenth time this morning the assistant starting telling Clark that he has run a few marathons. That sparked an interest in Clark and he asked a few questions before he told about Andy on his Special Olympics track and field team who has run the Boston marathon twice.
Phil’s anxiety manifested itself this way. He spent time examining a colorful toy fan while his assistant waited for him. Then he burst out in laughter which was louder than normal but which was still friendly and showed his interest in being there. Both were cooperative and especially happy when they were told they would each get paid.