Interagency Autism Coordinating Committee

By:  Kathleen Sebelius
Date: July 10, 2012
Location: Washington, DC

I'm very pleased to be here with you today.

This is the first meeting of the Interagency Autism Coordinating Committee since it was renewed by the Combating Autism Reauthorization Act of 2011. Today several members will be leaving the committee -- some of whom have served since it convened in 2007. Those of you finishing your service today have overseen historic improvements in our nation's approach to autism. Your advocacy and guidance has made it possible for researchers to open new doors to autism causes and interventions. And you've provided focus and attention on the needs of those living with autism and their families, creating new opportunities for them to reach their full potential. I want to thank you for your service to our Department and commend you on your ongoing commitment to the autism community.

I also want to thank the committee's returning members. And I want to welcome several new members who will make a major impact on the work being done here. I want to specifically acknowledge the three new self-advocates, Noah Britton, Scott Michael Roberts and John Elder Robison who will offer a unique and critical perspective.

The new committee convenes at an important moment.

For many years, autism has been a challenge families dealt with on their own. As recently as the 1990s, scientists thought autism was a rare disability that affected only 1 in every 2000 kids. Families and people living with autism often had nowhere to turn for answers or help.

Today we know that 1 in 88 children are living with autism. The need has never been greater for answers that will help individuals and families struggling with autism. President Obama recognized this when he named autism as one of his top three national health priorities in 2009. And since then, the Administration and HHS has sustained that urgency and worked diligently to improve the lives of those living with autism.

A perfect example is the passage of the Affordable Care Act, one the most historic laws for Americans with disabilities that our country has ever seen.

We know that access to affordable, quality health care is critical for people with autism and their families.

Now, thanks to the law, insurers can no longer deny coverage to children with pre-existing conditions like autism and new plans must cover autism screening for children at no cost to parents. The law will also ease the financial burden on treatment and care for people living with autism by allowing young adults to stay on their parent's coverage until age 26 and putting an end to lifetime dollar limits on care.

And when it comes to autism specifically, we're beginning to learn more about the causes. We're gaining a better understanding of how important interventions can be. And nationally, we've seen recognition of the full impact of autism and what it means for our country.

You've played a huge part in all of that.

In 2009, you created an inspiring strategic plan to guide autism research, and identify the key questions and priorities we needed to focus on. By updating the plan every year you've ensured that it continues to reflect the latest science and remains a roadmap for autism research around the country.

But even with all of the progress we've made in the last few years, we have a long way to go.

First, we need more answers from research. For example, we continue to learn more about the needs of those with autism, but there are still populations, like non-verbal, school age children, and adults on the autism spectrum, who we don't know enough about. And we need to do a better job of putting our resources where they can make the biggest difference.

Under the Obama Administration, we've made historic commitments to improve our knowledge of autism through research. In 2009 and 2010, as part of the funding provided for NIH grants through the Recovery Act, we made the largest single new investment in autism research our country has ever seen, adding more than $122 million to ongoing federal funding at NIH and other federal agencies.

And today autism research supported by NIH and many advocacy organizations, is addressing nearly every major objective in your Strategic Plan. Thanks to this work, we now have the foundation to make even more progress.

For example, Autism Centers of Excellence around the country are doing coordinated research on everything from causes of autism, to the most effective interventions, to possible medical treatments. This year we announced funding for new centers to build on and expand that work. And the National Database for Autism Research has pulled together results from federal and private research with data from over 30,000 subjects.

A second area, where we have to make a lot more progress is early detection of children showing signs of autism, and better access to interventions for those who are diagnosed. We know that whether it's screening, diagnosis, interventions, or services, the earlier we take action, the better. But too many children aren't getting diagnosed until they get to school, despite medical guidelines that recommend screening start at 18 months. And even then, a diagnosis doesn't always mean services will start right away. We need to change that.

This Administration has led the way in supporting research on innovative interventions that can help children with autism thrive. And we've also taken strides to close the gaps in autism services, particularly for minority communities.

For example, we know that many of the adults who spend the most time with our children -- like teachers, nurses, and social workers -- don't necessarily have the knowledge or training to recognize the signs of autism. Our Health Resources and Services Administration is working with universities and health training institutions to create interdisciplinary curriculum with an emphasis on learning the signs and providing the best services to a child who needs help.

We've also focused on creating culturally sensitive interventions for Hispanic and African-American children. This work recognizes that the way children display autism, and the best ways to help them, may differ between ethnicities. So we've put researchers in school districts like one in Los Angeles to work with minority children and learn what works. And we continue to support the CDC Learn the Signs, Act Early campaign to get families, health care providers and communities the information and resources they need on autism.

And, finally, we need to create better services and supports for older Americans living with autism.

The growing prevalence of autism in our country doesn't just mean more services for children and youth in school, but, increasingly, more services for adults in the community.

We know that living with autism can have big challenges. We also know that people with autism often possess amazing skills and can make amazing contributions to our communities. Our mission is to create opportunities that ensure people with autism, at all points of the spectrum, can thrive and participate in all aspects of our society.

To this end, we've invested over $3 million to develop a National Autism Resource and Information Center, called Autism NOW. The center will use a national network, regional events, along with training assistance to offer people and families living with autism quality information about services and interventions in their own communities.

Our vision is of a nation where every person with disabilities has the chance to live in their community and be treated with the dignity and respect they deserve. This is the right thing to do for all Americans. And it makes us a stronger country.

This is the vision that led our department to create the Administration for Community Living, bringing together our experts serving people with disabilities as well as seniors. The ACL is working to maximize the independence, well-being, and health of all people with disabilities, including people with autism, to make sure all Americans with disabilities have the opportunity to live a fulfilling, self-determined life in our communities.

For some that might mean help with affordable and appropriate housing. For others it might mean transition support as a young person moves from high school to adult life, including employment. For many families, it might mean finding support services and care.

And for all of these needs, ACL will be there to help.

If we are going to succeed in understanding and meeting the needs of people with autism, we need to do better in all of these areas. We need to continue to make progress. Not just for the sake of those living with autism and their families, but for our country. We cannot afford to leave people with autism on the sidelines. We must make every effort to help them live up to their highest potential and make a meaningful contribution to their communities and country.

Thanks in part to this committee's ability to focus and coordinate autism research and services, we've made significant progress. And we can't stop now. I know that each of you share that passion, and I look forward to working with you to continue improving the lives of people with autism together.

Thank you.