Twelve years ago today President George W. Bush signed into law the Combating Autism Act. At that time, there were no officially known causes for the vast majority of autism, there were no preventive methods, no treatments, and no cures. The autism rate was generally thought to be around 1 in 250 (sharply up from 1 in 2000 in the 1980s). Yet twelve years and $2 billion later, we still don’t officially know the causes for the vast majority of autism, there are no preventive methods, no treatments, and no cures. But the official autism rate is now 1 in 40 according to the National Children’s Health Survey (that’s approximately 1.5 million people under the age of 21 with autism) but the CDC still is not sure if the autism rate has gone up or not.
The Combating Autism Act morphed into the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014, a name contrived to create the absurd acronym Autism CARES Act. Annual spending on autism research increased from $180 million to $260 million per year (slightly more than the New York Yankee’s annual payroll.)
The Autism CARES Act must be re-authorized by Congress by September 30 of 2019. Re-authorization provides America and Congress with the opportunity to take a hard look at our federal autism research program and demand that it take a very different direction.
Please click on the Take Action link to send a message to your members in Congress asking them to support a re-authorized program that goes in a completely new direction outlined below.
The Autism Action Network will be focusing on informing the public and decisionmakers about the abject failure of the federal autism research program and pushing for an aggressive, well-funded program. Here are key changes we want to see in a re-authorized autism research bill:
- Epidemiology that answers whether the autism rate is going up. Every time new higher numbers come out they are always qualified with claims that we are not certain if the increase is real. This uncertainty provides the cover to deny that we are in an epidemic and provides the cover for inaction.
- Fund autism research at a level commensurate with the problem. $2 billion over ten years for a federal program is a rounding error. We spend $3 billion per year on HIV/AIDS research, and we know the cause, we have effective prevention and treatment methods, and we have accurate numbers. But it took an investment of more than $100 billion to get us here.
- We can't prevent, treat or cure a disorder if we don't know the causes. Genetic causes have been the focus of research, but if the rate is going up the cause can't be genetic. A great number of environmental causes from biocides, to air pollution, and vaccines are implicated in causing autism. All of them must be rigorously evaluated.
- Change the ridiculous name of the law.
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