Fetal alcohol syndrome through the eyes of parents.

Abstract

Although fetal alcohol syndrome (FAS) was first identified by research scientists in the USA in 1973, it was not until 1989 when an adoptive parent, Michael Dorris, wrote The Broken Cord, that a practical description of the disability came into public awareness. Within the next 2 years, parents of children diagnosed with this disability teemed up with interested professionals to organize the FAS Family Resource Institute (FAS*FRI). This educational non-profit organization has now devoted over a decade to their mission to identify, understand and care for individuals with fetal alcohol syndrome/effects (FAS/E) and to prevent this disability from occurring in future generations. Their mission has necessitated the identification of a behavioral phenotype for FAS/E, the development of a professional training curriculum, and operation of a national family advocacy and mentoring network. By adding their own families' experiences to the information gathered from thousands of other families with diagnosed children, they have accumulated enough experiential, frontline reports which are similar enough to serve as their research science base.