Dr. Cathy Pratt
Indiana Resource Center for Autism
Indiana Institute on Disability and Community
The University Affiliated Program of Indiana
Autism Society of America
Board of Directors
House Committee on Government Reform
April 6, 2000
Mr. Chairman, Thank you for the opportunity to present testimony concerning Autism Treatment Options and Research. I am here today as director of the Indiana Resource Center for Autism located at Indiana University's Indiana Institute on Disability and Community and as a member of the Board of Directors of the Autism Society of America.
I would like to begin by commending this Committee for directing its energies toward todays hearings. For too long, individuals with autism spectrum disorders have not had their voices heard. While I have the attention of the Members of the Committee, let me urge you to do two things that will help. First, please send a letter to your colleagues at the Appropriations Subcommittee that funds the Centers for Disease Prevention and Control (CDC). Ask them to provide the proposed funding to expand the CDCs work in gathering national data on the prevalence of autism. Second, join 41 of your Colleagues in co-sponsoring H.R. 3301, an omnibus childrens health bill that provides clear direction to the CDC and the National Institutes of Health for speeding up the research and public education in autism.
The increasing incidence of autism has generated a renewed and much needed focus on autism spectrum disorders. As the incidence increases, research into both the causes and effective treatment options becomes paramount. Across the United States, families are struggling with the many challenges presented by a family member with autism and the systems which are needed to support him/her. Below are a few comments which reflect major issues often heard. These major issues include, research into potential causes, early intervention, insurance coverage/funding mechanisms, adult options, and trained professionals,
Research into Potential Causes. Autism is referred to as a spectrum disorder to highlight the differences among a population who share a common diagnostic label. Just as these individuals differ in their characteristics, so may they differ in the causes of their autism. It seems clear that autism is a genetic disorder. Children are born with a genetic predisposition for developing the characteristics of autism. At some point prior to, during or after the birth process, something occurs that triggers autism to occur. Potential triggers include environmental factors, illness, complications during the birth process, or factors related to diminished immune systems. One of the triggers that is being considered and discussed by families is the measles-mumps-rubella (MMR) vaccination. While this is not a statement in support of eliminating vaccinations, it is a plea for examining this potential relationship and for developing ways in which to more safely vaccinate children. The hope in examining potential causes is two-fold. First, the idea is that if the cause can be found, a cure will soon follow. While finding a cure may be in the distant future, research into potential causes can have a more immediate impact. If causes are found, such as the MMR vaccination, that can be dealt with immediately, we may be able to prevent numerous families and children from being affected by autism. However, I encourage the committee to support research which will look broadly at potential causes.
At the same, time, I would like to speak to the federal framework of support for those 500,000 individuals currently diagnosed with autism spectrum disorders and their families. These individuals and their families can benefit dramatically from early intervention, special education, and adult services. Yet, there are many barriers to their ability to secure such supports.
Early Intervention. The National Academies of Science and the National Institute on Health are to be applauded for their efforts in examining the status of research related to educating young children with autism spectrum disorders. While there is generally professional agreement regarding essential features of intervention for children with autism spectrum disorders, there is less agreement regarding the best specific program. The hope is to be able to identify treatment approaches which will have the greatest long term impact and which are responsive to the core deficits of autism spectrum disorders. Based on testimony provided by leading professionals to the National Academies of Science, it is clear that additional research is needed to determine critical features of programs.
Full Funding for IDEA and Professional Development Efforts. In a recent report, it was noted that 44 out of 50 states are not in compliance with the "free and appropriate education" mandate of the Individuals with Disabilities Education Act (IDEA). While the reasons for this situation may differ in each state, we do know that states need financial support when mandated to provide services.
While IDEA authorizes funding for personnel development, the funding allocated is not sufficient to meet the need. As the incidence of autism grows, we are encountering a stark gap between the demand for trained personnel and the availability of teachers and medical professionals who have had training in how to identify and respond to individuals with autism. In some cases, professionals with little or no training are taking primary responsibility for the education of children who challenge the most trained professional. Across the country, families cry out for training of pediatricians and other medical personnel. Physicians are often the first source of information for families whose children are newly diagnosed. They have a tremendous responsibility for starting parents on the right track. In order to do so, physicians must have more and better information related to diagnosis and treatment.
Insurance Coverage/Funding Sources. When faced with the high cost of interventions, therapies, medications and other necessary support services, families look to state and local agencies for financial resources, and/or to their insurance companies. Often times individuals with autism spectrum disorders are not eligible for insurance coverage. For example, one individual was ineligible for insurance coverage for an appendectomy because autism was considered a pre-existing condition. In other words, even though a physical illness is completely unrelated to autism or its behavioral manifestations, sometimes individuals with autism are denied coverage. This policy is based on a very distorted understanding of what autism spectrum disorders are and how they affect a persons physical health. When faced with the high costs of medical care, therapies, medications, and other treatment approaches and interventions, many find themselves mortgaging their homes to ensure that their child has the best possible care. The financial and emotional toll on the entire family is enormous. Families then turn to other state and local agencies for financial support. These resources are scarce, and in some states non-existent. Families are told that they have a window of opportunity in which to intervene with their child. When resources and services are not available during this critical time period, families are willing to risk financial devastation. The end result is tremendous stress on their marriages, and intense levels of personal stress in coping with their childs autism. And again, this impact is felt by the entire family, including siblings and grandparents.
Employment and Supported Living. Today, a high percentage of individuals across the autism spectrum remain unemployed. When employed, they are often either under employed or in jobs which do not match their talents. Some of our most talented individuals face a life of poverty. For others, living options which allow them to reside in their community and receive needed support is only a dream. While progress has been made in this arena, much is still left to do.
While I commend the Committee for taking this opportunity to listen to families today, I also urge you to support authorizing legislation and appropriations provisions that would further the state of autism research. Support Congressional efforts to fully fund IDEA, providing the supports and services that students with autism need, including adequate training for education personnel. We need better training for medical professionals, more opportunities for employment and supported living, and access to health care coverage. While much progress has been made, there is still much to do.