I have been asked to appear before you today to give the Committee and the families of autistic individuals a sense of the NIH's ongoing and planned research and other activities related to autism. As a representative of the NIH, and more directly, of the member institutes of the NIH Autism Coordinating Committee, I want to explain that we share the sense of urgency that autistic individuals and their families and advocates feel with regard to unlocking the mysteries of this devastating disorder. There is considerable variability in the severity of the symptoms, and intellectual function can range from profound mental retardation to above average performance on IQ tests. Epilepsy also occurs in about 30 percent of autistic individuals.
Autism occurs in all racial, ethnic, and social groups.
The full committee meets at least three times a year to coincide with meetings of the institute national advisory councils, and meets annually with representatives of autism research advocacy organizations. Estimates vary widely, but recent studies suggest that as many as one in 500 persons may be affected by some form of autism. Recent reports suggest that the incidence of autism may be substantially increasing. It is not clear that the reported increases can be accounted for by improved or expanded diagnosis, or by the increasing availability of educational and other support services, although these are surely factors. NIH recognizes the pressing need to do the work that will give us essential knowledge of the true prevalence of autism and the trends of that prevalence over time, and is actively working with the CDC to design studies that could yield this knowledge.