[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
This historic legislation is designed to greatly increase funding and awareness of autism, a severe neurological disorder that currently affects over 400,000 individuals in the United States alone, and one in every 500 children born today, at an annual national cost of over $13.3 billion dollars.
Senator Slade Gorton (R-WA)
Representative Jim Greenwood (R-8th PA)
Spencer Abraham (R-MI), Barbara Boxer (D-CA), Thad Cochran (R-MS), Lauch Faircloth (R-NC), Dianne Feinstein (D-CA), Wendell Ford (D-KY), Phil Gramm (R-TX), Tom Harkin (D-IA), Daniel Inouye (D-HI), Mary Landrieu (D-LA), Frank Lautenberg (D-NJ), Joseph Lieberman (D-CT), Barbara Mikulski (D-MD), Daniel Patric Moynihan (D-NY), Robert Torricelli (D-NJ)
Gary Ackerman (D-5th NY), Thomas Allen (D-1st ME), John Baldacci (D-2nd ME), Robert Borski (D-3rd PA), Rick Boucher (D-9th VA), Jerry Costello (D-12th IL), Martin Frost (D-24th TX), Earl Hilliard (D-7th AL), Maurice Hinchey (D-26th NY), Marcy Kaptur (D-9th OH), Carolyn Kilpatrick (D-15th MI), Peter King (R-3rd NY), John LaFalce (D-29th NY), Thomas Manton (D-7th NY), Robert Menendez (D-13th NJ), Constance Morella (R-8th MD), Donald Payne (D-10th NJ), Ileana Ros-Lehtinen (R-18th FL), Steven Rothman (D-9th NJ), Marge Roukema (R-5th NJ), Jim Saxton (R-3rd NJ), Brad Sherman (D-24th CA), Ike Skelton (D-4th MO), Ellen Tauscher (D-10th CA), Robert Wexler (D-19th FL)
The main points of the legislation:
1. The bill creates five Centers of Excellence for autism.
Centers of Excellence for autism are university sites that would combine clinical and basic research in autism, and draw the attention of the nation’s top scientists. The centers are themselves part of a network that enables findings to be rapidly disseminated and replicated. This exact approach has been very effective in Alzheimer’s research and has been responsible for incredible advances in reasearch towards a cure for childhood leukemia. Currently autism, if it is studied at all, is for the most part lumped in with large programs on mental retardation.
2. Money is designated for creation of a centralized and open gene bank, and for brain banking.
These open banks are essential for scientific progress in autism. Because no such resources currently exist, family voluntary groups like Cure Autism Now (CAN), the Autism Society of America (ASA) and the National Alliance for Autism Research (NAAR) are raising the money and creating them on their own. This is a painfully expensive proposition for affected families, but without these resources, serious research cannot progress.
3. Development of an awareness campaign for the public and physicians.
Greater awareness means earlier diagnosis — which leads to more effective early intervention treatment– which leads to better outcomes and more independent people. Currently, physicians often do not know about autism or how to diagnose it. Doctors frequently tell parents, “Don’t worry he’ll grow out of it,” thus losing, in many cases, over a year or more of potentially critical treatment.
4. The NIH is encouraged to allocate money to the currently unfunded joint institute program announcement in autism.
For the first time in 40 years, talented scientists are now being drawn to the study of autism. This action would take advantage of this new momentum and expand on it by making a strong statement to the scientific community that autism is important to the NIH.
5. Legislate roughly $40 million a year for five years to autism.
That translates to approximately $100 per year per person — in contrast to roughly $158 for multiple sclerosis, $600 for breast cancer, $424 for diabetes, and over $1,000 for AIDS.