Home > Government Relations > Don’t Let the Sun Go Down on Combating Autism Act

Don’t Let the Sun Go Down on Combating Autism Act

The landmark Combating Autism Act (CAA), signed into law by President George W. Bush in 2006, gave all of us in the autism community a foundation on which to build. But key provisions in the law are scheduled to sunset September 30. Unless Congress acts quickly to renew the law, the funding we need to continue vital research will vanish. The progress we have made over the past five years will grind to a halt. There simply is no more important or immediate issue for us today at the national level.

Autism impacts not just the people with the disorder themselves, but their immediate families as well as taxpayers who will have to pay higher taxes to care for people with autism if treatments and therapies are not developed to help them live independent lives. Fortunately, bills have just been introduced in both houses of Congress – the Combating Autism Reauthorization Act of 2011 (CARA) – to continue the momentum we have built since 2006. These bills have the support of both political parties, a rarity in Washington these days, but need the support of the entire autism community. The original 2006 act passed Congress with near unanimous support – it is time again to make sure your voice is heard with your Senators and Congressmen. Sign up to receive alerts from Autism Votes.

Why was CAA so important? For the first time, the U.S. government recognized the specific impact autism spectrum disorder (ASD) has on a significantly large portion of the American population. Nearly $1 billion in federal investment was authorized for biomedical and treatment research for autism. The law also required the development of a comprehensive, strategic plan requiring all federal agencies that have anything to do with autism, whether in health, education, or social services, to coordinate their efforts and, for the first time, communicate with each other through the Interagency Autism Coordinating Committee (IACC). This is important because it is easy for each agency to work in isolation without ever realizing how their work or study could impact another agency’s efforts.

One billion dollars is an extraordinary amount of money. But the fact that one in 110 children, including one in every 70 boys, is now diagnosed with an ASD is also extraordinary, an alarming testament to the growing crisis of autism in the U.S. It is easy to understand why our community is coming back to Congress to reauthorize this legislation for vital research. The newly introduced CARA bills would continue federal funding at current levels for another three years. The need for even more funding is obvious; but the concerns within Congress over the size of the federal deficit must be respected if we are to move forward.

The CAA has given us the foundation on which to continue to build. Some of the bricks in that foundation include:

  • Development of standards of care for medical and behavioral health, clinician guidelines and training
  • New treatments for commonly associated medical conditions, such as sleep and gastrointestinal disorders
  • Improved methods for autism screening and recommendation for universal screenings at well baby check-ups
  • Development of effective early intervention methods for toddlers
  • Detailed surveillance by the federal Centers for Disease Control and Prevention (CDC) of the increasing prevalence of ASD
  • Identification of several autism susceptibility genes leading to drug discovery and earlier detection in infants at risk for ASD

And what do we lose if CAA is not renewed?

  • A requirement holding the federal government accountable for its efforts to improve the lives of persons with ASDs through research
  • Two intervention networks – physical and behavioral health – that support the development of clinical care practice guidelines, clinical training and research on effective treatments
  • Augmented support for the University Centers of Excellence in Developmental Disability (UCEDD) to promote training and dissemination of best practices in ASD screening, diagnosis and treatment
  • The mandate requiring that a strategic plan for autism be updated annually
  • A shutdown of the IACC – the special team that has come together to share any and every advance that has emerged to help combat autism

One day, we will put a roof on autism – find the causes, effective treatments and, ultimately, answers for all those seeking a cure.

In the coming months we will need your help to contact your United States Members of Congress, both in the House and the Senate. Please sign up to receive alerts from Autism Votes. We make it easy for everyone to get involved. To speak your mind. To tell legislators what you want. To make Congress listen.

  1. Montana
    May 26, 2011 at 8:36 pm

    Just thought I’d point out that, in addition to registering for Autism Votes, you always have the option of e-mailing your Senators and Congressperson directly. Just go to their Websites, you’ll find a contact form.

    For Congress: lastnameofcongressperson.house.gov
    For Senate: lastnameofsenator.senate.gov

  2. May 26, 2011 at 9:05 pm

    I wonder why autism speaks endorses the combating autism act when they have given laurent mottron a nearly half million dollar grant when he says the notion of curing autism is nonesensical and says autism is a harmless condition. I also wonder why autism speaks would endorse this law when they have John Robison on their scientific advisory board and Alex plank, who has stated that autism is a good thing and most autistics don’t want to be cured has his films funded by AS.

    • Brenda Dalke
      May 29, 2011 at 10:37 pm

      Wow…maybe I missed something. Was that a critical statement or are you serious?

    • jodi
      June 20, 2011 at 10:27 pm

      i know u dont have any idea what its like to live with autism. it is definately harmful and isnt a good thing. Have a child with autism then open ur mouth.

  3. May 27, 2011 at 3:36 am

    I look forward to contacting my Congressman and Senators in the very near future. While reading this blog, I found myself tearing up because my son is Autistic and we struggle daily with his needs. My wife is Epileptic and sometimes blames herself for our sons disability. The real reason is unknown and I am sure she could not have done anything different while she was pregnant or when Ryan was still very young. We continue to pray for a cure and for those who work on the cure. John, Father

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