“Someone snuck into my home and stole my one-and-a-half year old’s mind, leaving his bewildered body behind.” This is how it feels to have your son diagnosed with autism, according to Jon Shestack, vice president of Cure Autism Now. “If 1 in 250 children were actually being abducted rather than diagnosed with autism it would be a national emergency.” This sobering observation sets the tone of the January 7, 2004 Journal of the American Medical Association report on the National Autism Summit. It’s staggering how little we understand about autism spectrum disorders. An act of Congress in 2000 created the Interagency Autism Coordinating Committee, which developed a 10-year agenda for understanding what causes autism, preventing at least 25 percent of cases, and enabling speech in at least 90 percent of those who are diagnosed. This ambitious plan, nicknamed, “the matrix” was unveiled at the first Summit. One piece of the matrix already underway is the Childhood Autism Risks from Genetics and the Environment (CHARGE) study, where tissue and blood from 1000 children with autism will undergo unprecedented intensive analysis. I’m thrilled that this agenda is moving forward, and hope that the momentum and speed will build – even faster than new diagnoses of autism are skyrocketing.
In the meantime, even though we are operating in the dark, we do know that substantial early intervention and treatment offers the best results for kids diagnosed today with autism. It may seem unduly expensive, but not only does this effort improve life for the child, early intensive neurobehavioral treatment has been calculated to slash lifetime disability bills for each child by about $1 million.