Parents as Trainers of Legislators, Other Parents, and Researchers

Abstract

Parents of autistic children learn early in their child’s life how little professionals know about autism. Trained by their culture to trust the experts, they are soon dismayed and unsettled to learn that the “experts” know as little as they do, or less. Alone, especially at first, and faced with an extremely atypical child, many exhaust themselves in finding information that might help. They soon realize that the service providers will not provide unless there is a better understanding of autistic children and the urgency of their needs. With the fervor of desperation they read articles, study references, write to authors, call authorities in the field, exchange information with more knowledgeable parents. They will often deluge a professional with material from their latest search. Their files become fat, their wallets thin from copying at the local libraries.