Making the Diagnosis
Depending on the results of a child's screening test, the next step is a more definitive diagnosis process, like the one I recently observed at the University of Massachusetts Medical School, where I work. From behind a one-way mirror, I watched developmental pediatrician Jo Ann Carson, M.D., while she performed the Autism Diagnostic Observation Schedule (or ADOS) on young kids suspected of having autism. The evaluation looks something like a structured playdate, where the doctor and child might blow bubbles, talk about a birthday party, read a story, and do other fun projects over 45 minutes.
After each activity, Dr. Carson recorded a child's responses and assigned a score for 11 key skills (making gestures and recognizing facial expressions, for example). A zero meant that the child was normal, and higher numbers indicated a cause for concern. Dr. Carson then tallied the scores. This is essentially how doctors diagnose autism spectrum disorders: A total score of less than 4 means the child is probably developing typically, 4 or 5 implies a milder form of autism, and 6 or more points means the child has more severe autism.
As I watched the children, I realized that some pre-schoolers seemed clearly affected. They failed to make any eye contact, did not speak to share their feelings, and seemed not to notice people at all. Other children's symptoms didn't strike me as worrisome. One kindergartner who read, spoke, and appeared to be quite pleasant was diagnosed as having Asperger's syndrome, the form of autism characterized by peculiarities in speech and language and an inability to interact appropriately with peers, among other things. Later, Dr. Carson explained that she had been struck by the child's monotonous speech, inability to look directly at anyone, and, based on a report from his teacher, serious problems making friends.
Catherine Lord, Ph.D., director of the new Institute for Brain Development at New York-Presbyterian Hospital, Weill Cornell Medical College, and Columbia University Medical Center, in New York City -- who developed ADOS -- explains that in severe cases "you know within five minutes that the child has autism." Such children seem truly lost in their own world. But for other very young children, their behavior isn't definitive enough after several hours of testing to warrant an immediate diagnosis. The good news is that those children usually qualify for the same types of educational and support services they'd get if they were found to have autism -- and they are nearly certain to benefit. "All early intervention focuses on helping children develop social and communication skills, which are the keys to life," says Dr. Wright. Such services range from speech therapy (like my son Jake got) as infrequently as once a month to intensive one-to-one daily behavioral sessions from a specialized therapist.