Written Testimony of Lee Grossman, President of the Autism Society of America

Before the

U.S. House of Representatives
Committee on Government Reform

Hearing on Autism
April 18, 2002
 

My name is Lee Grossman and I am President of the Autism Society of America, Chair of the Autism Society of America Foundation, a member of the federal government's Interagency Autism Coordinating Committee, a resident of Honolulu Hawaii, a small business owner for over 20 years in the medical industry and, most importantly, a father of a child with autism, Vance. Mr. Chairman, I would like to thank you and your colleagues on the Committee on Government Reform for this opportunity to present testimony on the issue of autism, the fastest-growing disability in our country today. As president of the Autism Society of America, I can tell you that hearings such as this offer hope to the hundreds of thousands of individuals and families affected by autism.

The Autism Society of America (ASA) is the nation's largest autism organization with over 200 chapters throughout the U.S. representing professionals, individuals with autism, and their families.

I am here today to share some important information about autism with you and to tell you why it is imperative that we do everything possible to expand programs and research into this puzzling and debilitating disability. You may be surprised to learn that it has been 60 years since autism was first identified, and yet we still don't know what causes it, we don't know how to effectively treat it, and we don't know why it is on the rise although several theories exist regarding the dramatic increases that we are seeing across the United States.

Just ten (10) years ago, autism was thought to be a rare disorder affecting 1 in 10,000 individuals. Five years ago, researchers, including those at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and the Department of Education, estimated that 1 in 500 individuals had autism. Today, researchers believe this number may be closer to 3 in 500 (CDC, 2001). This means that as many as 1,500,00 individuals in this country alone may have autism today.

And, again, this number is on the rise and not solely due to better diagnosis and identification. Based on reports from the U.S. Department of Education and state agencies, the ASA estimates that autism is increasing at a the alarming rate of 10 to 17 percent each year, faster than any other disability or disease. At these rates, in the next decade, autism could surpass mental retardation as the most common developmental disability facing this country.

If we don't act now, there is no doubt that autism will have devastating effects on our national health and education systems. Today, the total cost of autism is $20 billion to $60 billion annually (based on current figures of 500,000 to 1,500,000 individuals with autism at an annualized per-person cost of $40,000). By 2010, this cost associated with autism could more than double or quadruple to $55 billion to $300 billion per year.

The only way to prevent this economic fallout from becoming a reality is to invest more money in research to solve the puzzle of autism, to expand educational and vocational opportunities, and to create support services that are currently lacking or non-existent for those already affected by autism.

Research and programs are needed now if we are to thwart the growth rate and to prevent more families from receiving the devastating news that their son or daughter has autism. We commend you and your committee for your recognition of the growing problem of autism with strides you have made in the last two to three years to raise awareness about autism and to support and put into motion several research initiatives and funding, including the research programs established as a result of the Children's Health Act of 2000. This is the type of informed action of which I speak.

In fiscal year 2002, NIH will be spending $66 million on autism activities, the CDC through its Center for Birth Defects and Developmental Disabilities will be allocating $9,230,000 for its surveillance programs. These funding levels represent a dramatic increase in research towards this disorder. We applaud the work of those federal agencies, which the ASA has enjoyed a close relationship with.

Unfortunately, these gains pall compared to the huge economic and social problem of autism today and in the near future. Our nation is in the grasp of an autism national emergency health crisis; a crisis that demands a significantly more aggressive response from the federal government to counter the growing costs and fractured lives caused by autism. If we are going to make further progress in our understanding of this disability and begin making strides in treating it, we must geometrically increase the research commitment from all areas of the federal government to approach the geometric growth of autism.

The ASA is the voice of the autism community, and that community seeks increased funding for: 1) research and prevalence studies, 2) physician and caregiver awareness programs, and 3) early intervention programs. The ASA also calls for legislative action with regard to the recommendations of the National Research Council's report "Educating Children with Autism" and the need for support services for adults with autism. Please note that as long as the cause and cure for autism elude us, more and more persons with autism will become adults with autism. The appropriate care levels for adults are and will be greater than costs related to children.

 

Autism Research

Current funding levels in biomedical research at NIH are terribly low in relation to the disorder's population and economic impact. We are recommending that the federal government increase the funding available for research over the next three years to a level of $500 million per year devoted to basic science, environmental science, tissue and genetic collection, and all aspects of biomedical research related to autism. When compared to the annual growing rate of autism in our nation, this is substantially below funding to keep pace with the projected growth of autism.

In the area of applied research, we must find new and innovate ways to develop and implement therapeutic and clinical interventions and effective treatments. There have been to date virtually no activity and support from federal agencies in these vital areas. We recommend applied research funding be increased over the next five years to a level of $100,000,000 per year. This increase is needed in the case of autism because we are building from a zero base.

ASA also recommends that there is a need to increase the number of scientists involved with research and treatment grants. We request that NIH develop programs that encourage researchers to enter into fields associated with autism research and to stimulate new research protocols.

The CDC surveillance programs need to be implemented and then expanded immediately so that more exact figures on the prevalence and population of those with autism are established. In our discussions with CDC, we recognize that data from a substantial number of state or other geographic areas will be needed to better identify those who have autism and what scope of services will be needed. We, therefore, recommend that the CDC budget in the area be increased by $8 million to expand the number of regional centers and state surveillance programs from nine states to twenty states. These twenty states should represent a statistically sufficient database to allow CDC to better identify those who have autism, and then start looking for root causes and trends.

As we must find the causes and best treatments for those with autism, there is also a need to fund areas which could identify possible causes of autism created by our society. A substantial number of families within our autism community believe some forms of autism may be cause by some use of vaccines. While we do not know this to be specifically proved at this time, we should not ignore the body of evidence which calls into question the source of many children with autism. If causation is found, those injured must be provided recourse and compensation. This is why ASA supports and asked for early adoption by the Congress of the Burton-Waxman Bill (HR 3741) which improves the National Vaccine Injury Compensation Program by extending the statute of limitations for individuals to file claims and provides a two (2) year "Lookback provision" for the families that are presently prevented from filing under the program through no fault of their own.

 

Early Diagnosis and Early Intervention for Children with Autism

ASA strongly supports the general consensus that the most effective means for a successful result in the life of an individual with autism is through early diagnosis and early, intense, and appropriate intervention. Successful early diagnosis and intervention is a proven way to reduce the huge social and economic burden of autism.

Therefore, we recommend that a national awareness campaign be established through the U.S. Department of Health and Human Services (DHHS), national physician organizations, and community health centers to provide education and identification programs to pediatricians, child care providers and to the population at large. ASA has expressed its willingness to act in concert with DHHS to make this happen by drawing upon its unique membership and chapter bases with the entire autism community.

ASA also seeks increased fund for states through their Early Head Start (0-3) programs administered by the Administration for Children and Families to provide the intensive interventions that are necessary to provide effective treatments to these children with autism.

 

Education for Children with Autism

ASA recommends to the Committee that it support and develop legislation to implement the recommendations and plan detailed in the National Research Council's report "Educating Children with Autism." The report precisely addresses the educational and intervention needs of secondary school aged children with autism. This is a case where the outreach of ASA has confirmed that there is something already in existence that can work today to benefit those with autism. This means money need not be spent on creating something new, but funds should be provided to get out the messages in this document and get what it advocates, which will be supported by the ASA, into practice.

ASA further recommends that Congress immediately reauthorize the Individuals with Disabilities Education Act (IDEA) and fulfills the long overdue commitment to the full funding of IDEA so our children and loved ones will be able to obtain a free and appropriate education.

 

Support and Services for Adults with Autism

The current availability of service, support, employment and residential options available to adults with autism can only be described as almost non-existent. For too long the service supports for these people has dramatically dropped once the person passes through the secondary education system. A comprehensive program must be developed and implemented to address the tremendous needs of this growing and immense population.

ASA has developed a white paper on this subject and has posted it on our Web site to help develop interest in having it implemented. ASA has joined with a coalition of adult service providers, and is assessing the needs of adults with autism to formulate initiatives and legislation to address this problem. We ask the Committee to join us in supporting the development of legislation and funding that will be necessary to deal with this current and ever-growing dilemma.

 

Conclusion

In closing, Mr. Chairman, I would be remiss if I did not address the relevance and significance of this hearing. It is the first time that I am aware that the United States government has acknowledged the Autism Epidemic and attendant national health crisis. And with your acknowledgement, ASA stands firm and ardent in requesting that this nation take real and measurable actions today to stop this national economic, social and health emergency.

I have described in my testimony what needs to be done now in terms of money and autism. However, there is something just as important to be added - that is hope. The autism community has endured 60 years of unfulfilled hope.

Congressman Burton, I know you have waited with hope for five years, and I have waited and hoped for 14 years. If we will take the actions I have offered to you today, all our hopes can be translated into fulfillment. Please let us help each other give meaningful hope to the millions of people affected by autism. Let's take action!


 

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