Combating Autism Reauthorization Act of 2011

I thank my good friend, the chair, Mr. Pitts, for yielding and for his leadership on all issues relating to health, and in particular on autism. I do want to thank Speaker Boehner and Majority Leader Cantor for bringing the bill to the floor. Without them, it wouldn't be on the floor today. And I also thank Energy and Commerce Committee Chairman Fred Upton. And of course, again, Chairman Pitts.

And I want to thank my good friend Mr. Doyle. We have worked on this for well over a decade. We formed the Autism Caucus. It has over 100 members. It is totally bipartisan. It has been a pleasure to work with him, and I thank him for his leadership as well.

Mr. Speaker, I do rise in support of this bill, H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation is critically important to continue without interruption the progress that has been achieved to date in understanding autism and in developing interventions that will have the greatest impact in helping individuals affected by autism or other developmental disabilities.

When I first got elected to Congress in 1980, the autism community accepted that autism prevalence rates in the United States were something on the order of 3 in 10,000. Today it is estimated to be 1 in 110, and in some places like New Jersey, the data suggests 1 in 94, for a total of about 1.5 million individuals in the U.S. who are suffering from autism.

On May 31 of this year, I chaired a hearing as chairman of the Africa, Global Health, and Human Rights Subcommittee, a hearing entitled, ``Global Autism: A Developmental Disability Pandemic.'' My committee received testimony that some 67 million people worldwide suffer from ASD in the world. There are tens of millions in Africa, according to the World Health Organization. It is an epidemic, and this legislation, the Combating Autism Act, is a very responsible and, I would suggest, modest effort to combat this pandemic that's occurring.

In 1998, Mr. Speaker, the wonderful parents of two autistic children in my district, Bobby and Billy Gallagher, asked me to look into what appeared at the time to be an autism prevalence spike in Brick Township, New Jersey. I invited CDC and the Agency for Toxic Substances and Disease Registry, ATSDR, and others to investigate. Not only did their probe show what appeared to be elevated numbers of children with the disorder in Brick Township, but the data strongly suggested a much wider problem than anticipated in other parts of my State because they weren't doing comparisons, and the data calls produced information which said, we have a problem not just in Brick, but elsewhere.

In direct response to that, in 1999 I introduced the Autism Statistics, Surveillance, Research, and Epidemiology, or ASSURE, Act to establish centers of excellence and create a Federal advisory committee which became Title I of the Children's Health Act of 2000. I always want to thank Chairman Bilirakis for including it in his bill. It made all the difference in the world. Five years later, the initiative was reauthorized and expanded in the Combating Autism Act, the law we respectfully ask Members to renew today.

According to the NIH, autism spectrum disorder--and just for the record, again, autism is defined as impaired verbal or nonverbal communication skills and social interactions, and restricted, repetitive, and stereotyped patterns of behavior ranging in impact from mild to significantly disabling--it ought to be noted that the Combating Autism Act of 2011 will continue the success of the CAA of 2006 by authorizing funding for programs at NIH, CDC, and HRSA for 3 additional years.

I would point out, and this is important, autism spectrum disorder is very expensive and, again, efforts made to mitigate its prevalence and to treat with early intervention those who show or manifest signs of it are not only humane, and that should be our driving force, but they are also very cost effective. It's estimated that ASD costs per year are between $35 billion and $90 billion dollars, with a ``b.'' So the costs are very, very large.

H.R. 2005, as my colleagues I know have said, would also reauthorize the Interagency Autism Coordinating Committee, or the IACC, a panel of government and public members tasked with coordinating all ASD-related activities within HHS, as well as developing and annually updating a strategic plan for ASD research in order to enhance the quality, efficacy, and applicability of research grants. In other words, let's spend the money wisely.

To avoid waste and duplication, the IACC has crafted three strategic research plans: one in 2009, one in 2010, and another for this year. For example, in 2009, the strategic plan included 40 research objectives, including development of new diagnostic tools, identification of genetic and environmental risk factors, and assessments of services for people with ASD in all ages in a community setting.

It should be noted that the aging-out issue is becoming increasingly a concern. What does a parent whose son or daughter or sons or daughters turn 21 and the full array of those services are no longer available? What do they do?

Recently I met with Chuck Colson's daughter, who wrote a book called ``Dancing with Max,'' a wonderful story of love between a mother and son. Her son now is aging out, and she is frightened by the prospect of what happens if she gets elderly and those services are not there. We need to be focusing on that.

The 2010 strategic plan had 32 new objectives, including health disparities in

early diagnosis and treatment of co-concurring conditions, such as epilepsy, sleep, and gastrointestinal disorders. The 2011 strategic plan added another 16 objectives, including studies on the use and accessibility of alternative and augmentative communication tools for nonverbal individuals.

I just want to say to my colleagues, and I have much more that I will put into the Record of how important it is, but all these different agencies of government are surging to try to combat autism. We need to reauthorize this legislation. The CDC has its ``learn the signs, act early campaign.'' My friend, Mr. Butterfield, earlier mentioned the fact that minority communities have been left out or diagnoses are often not done in a timely way. That is absolutely true. And more needs to be done. The programs are in place. The policies are in place. We need to continue what is truly a very, very effective use of taxpayer dollars to help these autistic children.

There is also the problem, as the information has shown, that early detection is key to mitigating the impact of autism. But still, even with 10 years' experience educating doctors, parents, and educators, there is still about a 2-year lag when there's a detection of something is wrong with my son or daughter before that diagnosis is actually made. The earlier we start the intervention strategies, the greater chance that child will have a quality of life and a life where they can then achieve their goals and their dreams, but if we don't catch it early and begin taking action, very often, the life of that child is more seriously impaired.

This legislation, like I said, is a modest step, but a very crucial step. I want to thank all the organizations for the work that they have done--they have been tremendous--the NGOs that are in the community, Autism Speaks, the Autism Society, the AUCD, all of the groups, for the work that they have done in educating Members.

And again, thank you Chairman Pitts for bringing this bill to the floor, and to Eric Cantor for scheduling it and ensuring that we can act on this in a timely way, and again my good friend on the other side of the aisle, Mr. Doyle, for his leadership.

Mr. Speaker, I rise today in support of H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation is critically important to continue without interruption the progress achieved to date in understanding autism and in developing interventions that will have the greatest impact in helping individuals affected by autism or another developmental disability.

When I first got elected to Congress in 1980, the community accepted that autism prevalence rates in the United States were 3 in 10,000. Today, it is estimated to be 1 in 110, and in some places like New Jersey, 1 in 94--for a total of 1.5 million individuals in the United States. On May 31 of this year, I chaired a hearing entitled, ``Global Autism: `A Developmental Disability Pandemic,' '' and my committee received testimony that some 67 million people suffer from ASD worldwide.

In 1998, the wonderful parents of two autistic children in my district, Bobbie and Billy Gallagher, asked me to look into what appeared to be an autism prevalence spike in Brick Township, New Jersey. I asked CDC and the Agency for Toxic Substances and Disease Registry (ATSDR) and others to investigate, and not only did their probe show what appeared to be elevated numbers of children with the disorder in Brick, but the data strongly suggested a much wider problem than anticipated in other parts of the State.

In 1999, I introduced the Autism Statistics, Surveillance, Research and Epidemiology (ASSURE) Act to establish centers of excellence and create a Federal advisory committee, which became Title I of the Children's Health Act of 2000.

Five years later, the initiative was reauthorized and expanded in the Combating Autism Act--the law we respectfully ask members to renew today.

According to the National Institutes of Health, Autism Spectrum Disorder (ASD) is ``characterized by impaired verbal and nonverbal communication skills and social interactions and restricted, repetitive and stereotyped patterns of behavior, ranging in impact from mild to significantly disabling.''

The total cost to society of ASD has been estimated from 35 to 90 billion dollars annually. The Harvard School of Public Health calculated that it can cost $3.2 million to take care of one autistic person over his or her lifetime. Looking at medical expenses alone, a CD study of employer-based health insurance showed that individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,100 to $6,200 per year.

A decade of research, surveillance, treatment and education has had a significant positive impact on the ASD affected person, as well as his or her family--who, as we all know, face huge financial and emotional challenges of their own.

The Combating Autism Reauthorization Act of 2011 will continue the success of the CAA of 2006 by authorizing funding for programs at NIH, CDC, and HRSA for three additional years. Total funding for the legislation will be at the fiscal year 2011 appropriated level of $231 million for each of fiscal years 2012, 2013, and 2014. The Reauthorization Act will authorize appropriations of $22 million for surveillance; $48 million for education, early detection, and intervention; and $161 million for NIH research and operation of the Interagency Autism Coordinating Committee.

This is not considered ``new'' money, but rather a straight-line reauthorization of total funds for the legislation, in compliance with the ``cut-go'' requirements of the 112th Congress. The Combating Autism Reauthorization Act also retains sunset and reporting provisions that ensure appropriate review and accountability.

H.R. 2005 reauthorizes the Interagency Autism Coordinating Committee (IACC)--a panel of government and public members, tasked with coordinating all ASD-related activities within HHS, as well as developing and annually updating a strategic plan for ASD research. In order to enhance the quality, efficacy and applicability of research grants and to avoid waste and duplication, the IACC has crafted 3 strategic research plans in 2009, 2010, and 2011.

For example, in 2009, the strategic plan included 40 research objectives, including the development of new diagnostic tools, identification of genetic and environmental risk factors, and assessments of services for people with ASD of all ages in a community setting.

The 2010 IACC strategic plan has 32 new objectives, including health disparities in early diagnosis and treatment of co-occurring conditions, such as epilepsy and sleep and gastrointestinal disorders.

And the 2011 strategic plan added another 16 objectives, including studies on the use and accessibility of alternative and augmentative communication (AAC) tools for nonverbal individuals.

The IACC also summarizes advances in ASD research identified as having the greatest impact on the field of autism, which has included the association between family history of autoimmune disease and ASD, genetic risk factors, racial disparities, and novel ways to diagnose ASD using speech patterns. Just for fiscal year 2010, NIH awarded 528 grants from baseline funding to pursue promising research related to autism.

This reauthorization bill also continues support of the critical surveillance and epidemiology programs that were established by the Children's Health Act and strengthened by the Combating Autism Act.

The Autism and Developmental Disabilities Network (ADDM) has published the most comprehensive and highest quality estimates to date of the prevalence of ASD in multiple areas of the U.S.

The Centers for Autism Developmental Disabilities Research and Epidemiology has implemented the Study to Explore Early Development (SEED), which is the largest study planned to date of the causes of autism, including genetic and environmental risk factors. The study has enrolled 2700 families and initial findings are due next year.

The CAA also focuses on programs in education, early detection and interventions that have already impacted the lives of hundreds of thousands of individuals with autism and other developmental disabilities and their families.

CDC's health communication campaign, ``Learn the Signs. Act Early,'' educates parents, health care professionals, and early childhood educators about the importance of monitoring a child's developmental milestones, seeking further evaluation where there is a concern, and seeking early intervention services as soon as possible.

The Maternal and Child Health Bureau of the Health Resources and Services Administration developed and implemented the Combating Autism Act Initiative, which is conducting research on and providing training to health professionals in the use of valid, reliable screening and diagnostic tools and in the provision of evidence-based interventions for children with ASD or another developmental disability.

As a result of increased awareness of the public, of educators, and of health care professionals, the median age for diagnosis of autism-- which currently is about 4.5 years--appears to be on the decline. However, it is important to continue our efforts, as there is still on average a 2 year time gap from developmental concerns to actual diagnosis, research has demonstrated the positive impact of implementing behavioral intervention before age 3, and Applied Behavioral analysis has shown significant improvement for children as young as 18 months.

In summary, under the Children's Health Act and the Combating Autism Act, our scientific infrastructure for addressing autism and other developmental disorders has developed and we have made major advances in our understanding of ASD. For the first time, we have high quality data on prevalence and data to support analysis of causes of autism, and a clearer picture of promising paths and gaps in research. Health professionals have a level of knowledge for greatly improved diagnostics and interventions to provide meaningful medical and behavioral benefits. There is optimism that a sustained focus on genetic and environmental triggers will lead to efficacious treatments and prevention strategies. Importantly, the infrastructure and programs are in place to continue our progress.

I want to thank our Speaker Boehner and Majority Leader Cantor, as well as Energy and Commerce Chairman Upton, Health Subcommittee Chairman Pitts for the leadership that have shown in moving this legislation forward. I also would like to thank my friend and autism caucus co-chair, Congressman Mike Doyle, for his work in developing and supporting this legislation.

I yield myself such time as I may consume.

Mr. Speaker, I am pleased to see that the House of Representatives is considering legislation to reauthorize the Combating Autism Act, and it's not a moment too soon with the Combating Autism Act set to expire at the end of this month.

I want to take this opportunity to emphasize the importance of this act, and I also want to thank my counterpart, my colleague and my good friend, Chris Smith, on the other side of the aisle, for his leadership on this issue.

Five years ago, the House of Representatives passed bipartisan legislation by a voice vote that provided the support and direction for the country's first autism-specific research. That bill, the Combating Autism Act, included life-changing provisions relating to the diagnosis and treatment of persons with autism spectrum disorders, and expanded biomedical research on autism, including an essential focus on possible environmental causes.

With this funding, the Centers for Disease Control have been able to put together detailed surveillance of autism so that we have better data to use. Autism screening at well-baby checkups have become mainstream, and parents are better educated about the warning signs, along with the treatment options. Additionally, standards of care for those with an autism spectrum disorder have been developed for both physical and behavioral health where there had been none.

Early diagnoses and intervention for children with autism is utterly life changing. It can mean the difference between independence in the community and living in a communal home. It can mean the difference between speaking or being mute. And for many parents, it means peace of mind and a support network that would have been impossible without this initial investment in research on autism spectrum disorders.

I introduced this legislation with my good friend, Chris Smith, as part of a three-bill package. Those pieces of legislation would ensure that there are also services available to adults with autism, which I think is critical. It's my hope that in the future this body will have a conversation about the needs of adults living with autism, and that we will consider how best to provide for them so that everyone has a long, fulfilling and productive life.

But, for now, it is of grave importance that the House passes this reauthorization with the same overwhelming support as 5 years ago and that we can get this bill to the President's desk by the end of this month.

I urge my colleagues to support this bill, and I reserve the balance of my time.

Mr. Speaker, I would like to thank the gentleman from Alabama, a valuable member of the Autism Caucus, for his words of support.

My good friend, Chris Smith, has joined us on the floor. Chris, you weren't here, I thanked you for your leadership, and it's good to see you.

Mr. Speaker, at this time I would like to yield 3 minutes to my friend and colleague, the gentleman from North Carolina (Mr. Butterfield).

I want to thank my friend, Chris Smith, for his important words. I hope all Members were listening carefully because the clock is running.

Mr. Speaker, we anticipate maybe some people coming to the floor to speak, so at this time I will reserve the balance of my time.

I yield myself the balance of my time.

Mr. Speaker, I first learned about autism when I was a young staffer in the Pennsylvania State senate. A gentleman by the name of Dan Torisky came into our office one day. His son, Eddie, had autism, and he had asked us to see what we could do at the State level to give him and his family some help. Eddie was a young man at that time. He's an adult now. He's in his mid-forties. A lot of people's idea of autism I think was from the movie ``Rain Man.'' That was about the only thing they knew about autism. It was something that people didn't understand and something that was frequently misdiagnosed.

When Chris and I decided to form this caucus over 10 years ago, one of the goals that we had was to bring education and awareness, not only to our colleagues, many of whom were not familiar with the disorder, but also to the public, and also to bring some attention to the researchers at NIH too, that there was something much bigger to this than people realized. It has borne fruit over the years. We've seen research dollars greatly increased at NIH.

I want to also echo what my friend, Chris, said about the parents' groups. This is really the strength of the autism community. It's not the Autism Caucus. It's not Chris Smith or Mike Doyle. It's really the parents of these children that formed the many different groups you see out there. Their grassroots effort really has grown this movement, brought attention to it, given it strength and brought us to where we are today.

We have a clock ticking. This act expires at the end of September. I know there's some concern over in the Senate with some of our colleagues about reauthorizing these specific bills. I hope that all of us will speak to our colleagues over in the Senate--I certainly intend to speak to mine--and stress the importance of continuing the great progress that's been made over these past 5 years. This is not a time for us to stop what we're doing and to pull support for this very, very important act.

I hope that we will pass this swiftly in the House of Representatives, and I hope all of us will use whatever influence we may have with our colleagues in the other body to see that they also get this reauthorized by the end of the month so that the President can sign it for all of the families out in America who are dealing with this disorder.

With that, Mr. Speaker, I yield back the balance of my time.

General Leave

Mr. Speaker, as a member of the Coalition for Autism Research and Education, I rise today to recognize April as National Autism Awareness Month. Autism is the fastest growing developmental disability in America, with 1 to 1.5 million Americans living with it each day. Every April since the 1970s we celebrate National Autism Awareness Month, which provides an opportunity to educate the public on autism and the issues affecting those people afflicted with the disorder.

This disorder is universal, affecting children from all ethnic, racial and socioeconomic backgrounds. The latest statistics from the Centers for Disease Control and Prevention state that 1 in 88 children born in the United States will develop autism.

Mr. Speaker, this increase is a clear call that more needs to be done in terms of research and education. Congress must call for more resources to be given to early screening and diagnosis programs. This can lead to improved educational and social outcomes and increases the chances of employment and independent living for those suffering from autism.

My own State of California has seen a huge increase in autism diagnoses. In 1990, 6 out of every 10,000 children born in the State were diagnosed with the disease by the age of five. Only 11 years later that number had risen to 42.5 in every 10,000 children. Since then the numbers have only risen.

Children diagnosed with this disorder will struggle with significant social, behavioral and communication challenges. For example, an activity as simple as going to the movies is impossible for many families with autistic children. However, autism is treatable. There is no permanent cure for the disorder, but studies show that early detection and intervention can lead to significantly improved outcomes.

Mr. Speaker, the occurrence of autism is on the rise in our nation. This is why it is more important than ever that we continue to fund programs like the National Database for Autism Research, whose overall goal is accelerating scientific discovery in autism spectrum disorder though data and research sharing among ASD investigators.

That is why it was so important that Congress passed H.R. 2005, the Combating Autism Reauthorization Act of 2011. I am proud to have been an original co-sponsor of this legislation, which authorizes more than $200 million in continued funding for the Centers for Disease Control's surveillance and epidemiological research programs for autism and other developmental disabilities and for the National Institutes of Health's respect to research program on autism spectrum disorders and possible environmental causes of autism. The bill also authorizes a robust autism education, early detection, and intervention program at the Health Resources and Services Administration, HRSA.

Mr. Speaker, nowhere is autism's impact felt more than in underserved communities, where diagnosis is delayed on average two years. Given that early identification and intervention are paramount to the developing brain of children with autism, this two-year delay is especially devastating, as it denies thousands of vulnerable children the benefits of early diagnosis and intervention. This can mean the difference between a child who may someday live independently, and a child destined for a life of institutionalized care.

The alarming delay in diagnosis becomes even more detrimental when compounded by issues of poverty, such as a lack of housing, employment, and transportation. This is the reality faced by families in underserved communities who are affected by autism and other developmental disabilities.

That is why I also want to recognize, commend, and encourage organizations like the Special Needs Network, Inc., which serve the greater Los Angeles community for the great work and service they provide to families and individuals affected by the autism in underserved communities.

This month, let us recommit ourselves to raising awareness about autism. We have a responsibility to continue to broaden our efforts to research this disorder, and increase awareness about the importance of early detection.

Mr. Speaker, I ask my colleagues to join me in recognition of National Autism Awareness Month, and ask all Americans to take time this month to find out what you can do to help the growing population of those afflicted with, or affected by, autism.

Mr. Speaker, I rise today in support of H.R. 2005, the Combating Autism Reauthorization Act. As a founding Member of the Congressional Children's Caucus, I am greatly concerned with the impact that autism has on children and their families.

The Centers for Disease Control and Prevention (CDC) estimates that Autism Spectrum Disorders impact an average of 1 in 110 American children, and 1 in 70 boys. We can all benefit from learning about this disease; autism occurs in all racial, ethnic, and socioeconomic groups. Continuing research on treating this disease is essential for children's health. Thousands of children with autism disorders have already shown significant improvement and increased independence resulting from early detection and new treatments.

Currently, there are between 1 and 1.5 million Americans living with a form of autism. If current diagnostic rates remain the same or increase, more children will be diagnosed with autism this year than AIDS, diabetes and cancer combined. Autism is the fastest growing serious developmental disability in the country. In my home state of Texas, where I represent the 18th Congressional District, there are 1 out of every 163 public students who are eight years old has a form of autism.

As many parents can attest, autism is an extremely costly disability; the average annual medical expenditures for individuals with autism are between 4 and 6 times greater than those without autism. The Center for Disease Control (CDC) places the average lifetime care cost for an autism patient at 3.2 million dollars. This legislation provides funding for services to assist individuals with autism and their families, and allocates vital dollars toward research to improve care and treatment.

The Combating Autism Act of 2006 was a landmark piece of legislation that raised awareness of autism spectrum disorders, and organized an aggressive federal response to autism. Reauthorizing this bill continues funding at current levels, $693 million dollars over 3 years for biomedical and treatment research, and services for those living with autism and their families.

In 2006, the Combating Autism Act established the disease as a national health priority, increased awareness, and highlighted the need for swift and urgent action to address autism. Since that time, promising developments and innovations have helped individuals living with autism lead more independent lives. Improvements in detection and treatment have led to increased independence in teenagers and adults with autism.

The Combating Autism Reauthorization Act is a shining example of how government can do more than issue Social Security checks and debate debt reduction. This legislation clearly demonstrates that our government can be a force for good, and a mechanism for change. New science and new technology have presented an unparalleled moment of possibility; this legislation has the power to make real differences in the lives of those affected by autism.

Mr. Speaker, we all have constituents living with autism. We all have constituents whose child, sibling, cousin, or friend is living with a form of autism. This disability affects Americans of all races and backgrounds, and I urge my colleagues to join me in supporting H.R. 2005, the Combating Autism Reauthorization Act.

I thank the gentleman from Pennsylvania and, in fact, both gentlemen from Pennsylvania.

Mr. Doyle, I commend you, and I commend my colleague, Chris Smith, for your excellent work over the years in combating autism and for bringing this bill to reauthorize the Combating Autism Act.

As Mr. Doyle said, there is an increasing prevalence of autism, and it is a diagnosis and a condition that these children and their families deal with for their entire life. It's a challenge for those families, a tremendous challenge, one that can't be overstated; but it's also a challenge for society as well because the long-term cost involved in providing care for individuals with development disorders can be great, although it can be lessened. There is hope; there is treatment.

The blessing of recent years, in fact, has been that new research and early intervention programs are making an enormous difference in bettering the lives of young boys and girls with autism spectrum disorders.

With early intervention, many can lead much better if not almost normal lives, which is a blessing for all of us, and it's a joy to see. It's a joy to see these children respond to early intervention and begin to develop emotionally.

As a member of the Congressional Autism Caucus, I personally have seen exciting innovations at facilities using a comprehensive approach to care. Mitchell's Place in Birmingham is helping young children and adolescents in Alabama improve both their academic performance and social behavior by combining the latest in research and services with a structured and caring environment.

That center was started by a couple whose young boy had autism, and it is a blessing for our community. You only need to visit that center and see the beautiful children and the new hope that they have, not only they but their proud parents and grandparents as they realize that every day, every week, every month they are improving and becoming more a part of society and more a functioning individual as far as their interaction with others. It is literally a godsend to these people. It's an oasis. It's a spring in the desert.

A coordinated and comprehensive approach to the treatment of autism spectrum disorders has been key to this encouraging process. My home State of Alabama, I am proud to say, has recognized the importance of close cooperation when it formed the Alabama Interagency Autism Coordinating Council in 2008. To a certain extent it looked to Pennsylvania and the work that had been done there. Children and parents across my State are being helped by the council's planning and awareness efforts.

Finally, the Combating Autism Act has been crucial to promoting a coordinated approach on the national level. The renewal of this legislation will build on the successes that have already been achieved in a responsible and effective way. I close by saying that it's my hope that this legislation will receive overwhelming bipartisan support because it is doing good work while making life-changing investments in the health and well-being of

very special children and very precious children.

I thank you, Mr. Doyle.