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Government Mapping Out a Strategy to Fight Autism
I feel this story is the beginning of funding for autism. Here's why (drum roll, please):
1. They admit autism is not being delt with. The federal government is actually considering putting money into the disability!
2. They are claiming it will take 7-10 years to get services for kids. If they claim it will be in the next year or two, that would be misleading and impossible.
3. They said the "B" word: "There is wide agreement that intensive behavioral therapy, which can include breaking a simple task like hand washing into a dozen component parts, beginning at the earliest possible age, is highly effective for many children. "
4. Oh no, now they've done it, they even mentioned the "P" word: "Parents of autistic children are stymied by how difficult it is to find properly trained behavioral therapists." No! Really?
Read on by clicking on the Title above.
Government Mapping Out a Strategy to Fight Autism By JANE GROSS
Published: November 19, 2003
Propelled by the skyrocketing number of diagnoses of the perplexing brain disorder autism in children, federal officials have for the first time mapped out a long-term, interagency plan to deal with the problem. The plan includes objectives like the development of teaching methods that will allow 90 percent of autistic children to speak; the identification of genetic and nongenetic causes of the condition; and adequate services for all afflicted children in the next 7 to 10 years. The plan, which is to be unveiled at a major autism conference in Washington that begins today, signals the start of the push-pull process over financing.
Such a plan was required by the Congressional appropriations committee that controls the budget for scientific and medical research and education programs of all kinds. Few of the nearly 150,000 autistic children and young adults now getting special education services under federal law will benefit significantly, experts say, since the most effective treatment involves early, intensive behavior therapy, which is poorly understood and in limited supply. Autism is a disorder with a wide range of symptoms sometimes so mild as to let a child function in a regular classroom with special services and at other times so severe that a child is mute and institutionalized. The three-pronged plan sets goals for more coordinated biomedical research, earlier screening and diagnosis, and effective therapy. The plan demands, for the first time, collaboration between scientists, clinicians, educators and policymakers in an array of federal agencies.
"Millions of people need help," said Robert L. Beck, president of the Autism Society of America, the nation's oldest and largest autism advocacy group. "And this is a new opportunity and a very exciting one." The need is enormous. According to federal education officials, in 1992-93, fewer than 20,000 of the nation's nearly five million special-education students, ages 6 to 21, were considered autistic. Ten years later, nearly 120,000 of six million special-education students had autism. That does not count the 19,000 children 3 to 5 receiving autism services under federal law, or those younger whose numbers have not been tallied. Nobody knows the cause of the surge, although epidemiologists suspect it is largely a result of refined diagnosis and public awareness.
That does not change the dimensions of a problem that strains schools, medical services and families. Nor does it affect forecasts of growing caseloads for decades to come. Dr. Fred R. Volkmar of the Child Study Center at Yale University, a leading autism researchers and a member of the committee that drafted the 10-year plan, measures the crisis in more anecdotal ways. Twenty years ago, Dr. Volkmar said, when he told people he worked with autistic children, they often misheard him and thought he had said "artistic." They had never heard of the disorder, which typically affects the ability to communicate, form relationships with others and respond appropriately to the external world. By contrast, Dr. Volkmar said, it is rare these days not to know someone with an autistic child. He now sees children as young as 12 months, gets referrals from day-care centers and has a two-year waiting list. Were screening techniques to improve so that diagnoses could be made in infants, he would be hard-pressed to find schools, trained behavioral therapists or other services for them.
The plan, which will be reviewed by the Interagency Autism Coordinating Council, established by the Child Health Act of 2000, is presented in broad brush strokes, with few details and no price tags. It was drafted by scientists to assess the state of autism research and identify the roadblocks that might be hindering progress in understanding the cause and the best treatment options. The plan lays out a timeline, in increments of 1 to 3 years, 4 to 6 years and 7 to 10 years and then ranks goals according to the likelihood of achieving them. Realistic goals in each of the three stages include the development, evaluation and institution of effective treatments, in collaboration with the Department of Education. More challenging goals, by contrast, include finding effective drugs for the symptoms of autism and identifying environmental factors that may contribute to the development of the disorder.
"The idea is to be challenging everyone in the field to be reaching for the best we can possibly do," said Dr. Steve Foote, the director of neuroscience at the National Institute of Mental Health, which was designated the lead agency by the Child Health Act. The legislation, passed in the Clinton administration, addresses dozens of childhood disabilities. Advertisement
Some parents are likely to be frustrated by the plan's suggestion that it will take at least seven years to provide treatment for all who need it. Mr. Beck of the Autism Society of America hoped that long-term research and improved services were not mutually exclusive. "There are good practices out there," he said, "just not enough of them." He added: "And there's no money on the services and treatment side. What do we do with the kids for the next 7 to 10 years? We have to do both. You cannot just throw away a generation of children." Many researchers and clinicians in the field credit the advocacy community with galvanizing the government, following in the footsteps of AIDS advocates in the 1980's.
There are several such organizations, all included at the conference, that have shifted emphasis from looking for a cure to also fighting for a more systematic study of treatments and more services for children. There is wide agreement that intensive behavioral therapy, which can include breaking a simple task like hand washing into a dozen component parts, beginning at the earliest possible age, is highly effective for many children. What remains a mystery is which children benefit and why, which techniques work best and whether early improvement is sustained over time, said Dr. Catherine Lord, director of the Autism and Communications Disorder program at the University of Michigan and an author of the interagency plan. Parents of autistic children are stymied by how difficult it is to find properly trained behavioral therapists.
Like others on the scientific side, Dr. Volkmar said that was because the Department of Education, under President Bush, had been "a real stumbling block." Mr. Beck agreed and said he was "quite excited to see them at the table." Education officials denied a lack of interest.
Robert Pasternack, assistant secretary for special education, said Mr. Bush had been generous in his financing requests for educational services for the disabled. Mr. Pasternack acknowledged a "critical shortage of special education teachers" and said the government was eager to "help states recruit and train them."