!!Combating autism: Santorum's bill would provide almost $1B!!

[Guest guest]

http://www.pittsburghlive.com/x/pittsburghtrib/s_457595.html Combating autism: Santorum's bill would provide almost $1B Photo Galleryclick to enlargeCoaxing Tyler Bridge/Contributing photographer Federal fundingThe Combating Autism Act would authorize almost $1 billion in spending on autism research, training and treatment

over five years. Although the bill's language has not been finalized, the amounts listed in last year's proposal are not expected to change significantly. Here's what the bill would authorize the federal government to spend on autism: • $435 million: Expanding and coordinating research overseen by the National Institutes of Health and the Centers for Disease Control and Prevention. • $375 million: Improving and speeding the screening and diagnosis process. • $50 million: Training programs for doctors, scientists and health-care professionals. • $20 million: Improving medical care and the dissemination of information on

treatment for autistic patients. Tools Print this article E-mail this

article Subscribe to this paper Larger / Smaller Text By Liz VALLEY NEWS DISPATCH Sunday, June 11, 2006 Shelby Hainan can name dozens of things that would make life with her 6-year-old autistic son easier. She wishes a nearby school district had an autism support classroom so

she wouldn't be faced with the decision of home-schooling Tyler next year, sending him to a class that's a half-hour drive away or having him remain in an emotional support classroom at Kiski Area School District that doesn't suit his needs. She's working with limited resources -- both in her finances and in the area's professional services -- to get Tyler the correct level of medication and behavioral, speech and occupational therapy to keep him calm and focused enough to learn. And she's trying to scrape together enough money to build a fence around her Washington Township home so she can take Tyler outside without worrying about him bolting into traffic on nearby Route 66 or disappearing into the surrounding woods. "I cannot take my son outside because it's not safe," Hainan said as she looked into her tree-lined, sunny back yard from the inside of her locked house. Hainan is not unique in her experience

with autism and her criticism of the availability of services in the region. As the rate at which autism spectrum disorders are diagnosed continues to rise dramatically, more and more families are likely to share her problems. Federal legislation sponsored a year ago by Sen. Rick Santorum would help address some of the difficulties experienced by families affected by autism. The Combating Autism Act, proposed in April 2005 by Santorum, R-Penn Hills, and Sen. Dodd, D-Connecticut, would funnel almost $1 billion over five years toward expanded research and improved diagnosis, treatment and professional training. One of the bill's provisions would require all children to be screened for autism before they reach their second birthday because research has shown that early intervention of therapy and educational services helps children with autism or other developmental disorders to overcome their disabilities. Sharon Huss, a New Kensington resident and former therapy provider, said the services her autistic son, , 2, receives have made a significant improvement in his language and communication skills. "We've been really blessed with our early intervention program," Huss said, noting that is able to communicate through sign language. Huss also advocates better training for pediatricians so they can recognize the symptoms of autism earlier, which could get autistic children into early intervention programs sooner. The Combating Autism Act includes money for training programs for doctors, scientists and other health professionals to improve diagnosis and treatment of autism. The act also would double the number of Autism Centers of Excellence, which were established in 2000 by the National Institutes of Health to centralize research on the causes and treatment of autism. Another

requirement would be for the National Institutes of Health and the Centers for Disease Control to create long-range goals for autism research and to continue to centralize autism research among the many government agencies involved. Carpenter, the chief executive officer of the Pittsburgh-based Advisory Board on Autism and Related Disorders (ABOARD), said his organization is very supportive of the Combating Autism Act. "There's not a bill that's perfect, but this is a substantial piece of legislation," Carpenter said. "It will benefit the autism world. "This will double autism funding at the National Institutes of Health," Carpenter added. "This is a tremendous improvement over the past." Grieve-, the clinical director for North Huntingdon-based therapy provider Family Behavioral Resources, said any legislation that increases funding for research and training would be welcomed. "Most therapists weren't taught about autism in school," Grieve- said. "We learn about it in the field." With better-trained therapists working with children whose autism was diagnosed sooner, Grieve- said autistic children have a better chance to thrive and lead normal lives. "The diagnosis rate is just skyrocketing," Grieve- said, noting that FBR treats 800 autistic children in the region. The agency has 13 offices, including one in New Kensington. Carpenter noted that, while autism advocacy organizations are supportive of the legislation, some are concerned that language authorizing research into possible environmental causes of autism could be cut. Some people believe that thimerosal, a mercury-based substance once used as a preservative in childhood vaccines, causes or helps trigger autism. Not only are many autism cases diagnosed at about the time that children finish a series of childhood

immunizations, but many of autism's symptoms can mimic those of mercury poisoning. Many government-sponsored studies have tried to rule out thimerosal's role in autism but parents and autism support organizations have not been convinced, questioning the impartiality and accuracy of the studies. E-mails circulated by organizations including ABOARD have accused American Academy of Pediatrics' lobbyists of working to remove environmental research language from the bill. Marjorie Tharp, a spokeswoman for the academy in Washington, said the organization has not taken a position on the legislation and is not lobbying for or against it. "The American Academy of Pediatrics (AAP) supports ongoing research to determine the cause or causes of autism, to improve screening, diagnosis and treatment standards and to find ways to prevent it," she said. A spokesman for the National Institutes of Health declined to comment on the bill, noting that it was NIH policy not to take a position on pending legislation. A Santorum spokesman said the bill's language is being finalized among members of the Senate's Health, Education, Labor and Pensions Committee, but he said provisions for environmental research will remain in the bill. "We absolutely are keeping in the environmental research," said Traynham, Santorum's director of communications. However, he said research into thimerosal and vaccines likely won't be mentioned in the bill because it is unusual for legislation to be that specific in identifying research topics. "It is preferred to let the science lead where it leads, not exclude any possibilities or draw any preconclusions," Traynham said. He noted that it is very rare for Congress to get involved in disease-specific legislation, and that the bill is unlikely to pass unless it is widely supported by

the autism community. "They (Congress) won't go near this with a 10-foot pole if there is not a consensus," Traynham said. Traynham said Santorum hopes the committee will approve the Combating Autism Act in the upcoming weeks and that it will go to the entire Senate for a vote. "We strongly believe something needs to be done about autism," he said. "(The legislation) is timely and very much needed." It couldn't come too soon for Shelby Hainan and her son, Tyler. "They're not talked about as much as other special needs kids," Hainan said of autistic children. "If you've got a mental retardation diagnosis, you've got it made. They have the facilities and services for them. "I'm always fighting somebody for him," she said. She gazed around her modest home, where she uses dog leashes to secure her kitchen cabinets, locks every door and has cleared the shelves of knickknacks to

prevent Tyler from smashing valuables or smearing food on himself. "You can't leave him alone for 20 seconds or it's a disaster," Hainan said. "But I'm crazy about him. I'd have him all over again." About autism Autism is a developmental disorder associated with a wide range of behavioral, communication and learning problems. It is classified under the umbrella of autism spectrum disorders, which include Aspergers syndrome and pervasive-development disorder as well as classic autism. Part of the difficulty in diagnosing and treating autism lies in the disparity in symptoms. Some autistic children never speak while others can talk normally. Some throw tantrums over something as simple as a missing puzzle piece while others rarely react to their environment. Some have severe mental retardation while others have few learning problems. Other characteristics include

obsessive-compulsive tendencies, problems with sensory overload and self-stimulating behaviors such as hand-flapping, rocking and jumping. Prevalence of autism Although no national data exist that clearly show how common autism has become, research by the Centers for Disease Control and Prevention indicates that from 1 in 500 to 1 in 166 children are diagnosed with an autism spectrum disorder. The CDC estimates 24,000 children are diagnosed with autism every year -- or about one child every 20 minutes. Autism is more common than all other developmental disabilities except for mental retardation, which affects about 1 in 100 children. Prevalence rates for other childhood disorders and illnesses include: • Cerebral palsy: 1 in 350 • Diabetes: 1 in 400 to 500 • Cancer: 1 in 6,600. Liz can be reached at lhayes@... or (724) 226-4680. __________________________________________________

[Guest guest]

Well let me tell you about the "birds and the bees and the flowers and the trees and the moon up above- and their connection to a thing called autism."

!!Combating autism: Santorum's bill would provide almost $1B!!

http://www.pittsburghlive.com/x/pittsburghtrib/s_457595.html

Combating autism: Santorum's bill would provide almost $1B

Photo Gallery

click to enlargeCoaxing Tyler Bridge/Contributing photographer

Federal fundingThe Combating Autism Act would authorize almost $1 billion in spending on autism research, training and treatment over five years. Although the bill's language has not been finalized, the amounts listed in last year's proposal are not expected to change significantly.

Here's what the bill would authorize the federal government to spend on autism:

• $435 million: Expanding and coordinating research overseen by the National Institutes of Health and the Centers for Disease Control and Prevention.

• $375 million: Improving and speeding the screening and diagnosis process.

• $50 million: Training programs for doctors, scientists and health-care professionals.

• $20 million: Improving medical care and the dissemination of information on treatment for autistic patients.

Tools Print this article E-mail this article Subscribe to this paper Larger / Smaller Text

By Liz VALLEY NEWS DISPATCHSunday, June 11, 2006

Shelby Hainan can name dozens of things that would make life with her 6-year-old autistic son easier. She wishes a nearby school district had an autism support classroom so she wouldn't be faced with the decision of home-schooling Tyler next year, sending him to a class that's a half-hour drive away or having him remain in an emotional support classroom at Kiski Area School District that doesn't suit his needs.

She's working with limited resources -- both in her finances and in the area's professional services -- to get Tyler the correct level of medication and behavioral, speech and occupational therapy to keep him calm and focused enough to learn.

And she's trying to scrape together enough money to build a fence around her Washington Township home so she can take Tyler outside without worrying about him bolting into traffic on nearby Route 66 or disappearing into the surrounding woods.

"I cannot take my son outside because it's not safe," Hainan said as she looked into her tree-lined, sunny back yard from the inside of her locked house. Hainan is not unique in her experience with autism and her criticism of the availability of services in the region. As the rate at which autism spectrum disorders are diagnosed continues to rise dramatically, more and more families are likely to share her problems.

Federal legislation sponsored a year ago by Sen. Rick Santorum would help address some of the difficulties experienced by families affected by autism.

The Combating Autism Act, proposed in April 2005 by Santorum, R-Penn Hills, and Sen. Dodd, D-Connecticut, would funnel almost $1 billion over five years toward expanded research and improved diagnosis, treatment and professional training.

One of the bill's provisions would require all children to be screened for autism before they reach their second birthday because research has shown that early intervention of therapy and educational services helps children with autism or other developmental disorders to overcome their disabilities.

Sharon Huss, a New Kensington resident and former therapy provider, said the services her autistic son, , 2, receives have made a significant improvement in his language and communication skills.

"We've been really blessed with our early intervention program," Huss said, noting that is able to communicate through sign language.

Huss also advocates better training for pediatricians so they can recognize the symptoms of autism earlier, which could get autistic children into early intervention programs sooner.

The Combating Autism Act includes money for training programs for doctors, scientists and other health professionals to improve diagnosis and treatment of autism.

The act also would double the number of Autism Centers of Excellence, which were established in 2000 by the National Institutes of Health to centralize research on the causes and treatment of autism.

Another requirement would be for the National Institutes of Health and the Centers for Disease Control to create long-range goals for autism research and to continue to centralize autism research among the many government agencies involved.

Carpenter, the chief executive officer of the Pittsburgh-based Advisory Board on Autism and Related Disorders (ABOARD), said his organization is very supportive of the Combating Autism Act.

"There's not a bill that's perfect, but this is a substantial piece of legislation," Carpenter said. "It will benefit the autism world.

"This will double autism funding at the National Institutes of Health," Carpenter added. "This is a tremendous improvement over the past."

Grieve-, the clinical director for North Huntingdon-based therapy provider Family Behavioral Resources, said any legislation that increases funding for research and training would be welcomed.

"Most therapists weren't taught about autism in school," Grieve- said. "We learn about it in the field."

With better-trained therapists working with children whose autism was diagnosed sooner, Grieve- said autistic children have a better chance to thrive and lead normal lives.

"The diagnosis rate is just skyrocketing," Grieve- said, noting that FBR treats 800 autistic children in the region. The agency has 13 offices, including one in New Kensington.

Carpenter noted that, while autism advocacy organizations are supportive of the legislation, some are concerned that language authorizing research into possible environmental causes of autism could be cut.

Some people believe that thimerosal, a mercury-based substance once used as a preservative in childhood vaccines, causes or helps trigger autism. Not only are many autism cases diagnosed at about the time that children finish a series of childhood immunizations, but many of autism's symptoms can mimic those of mercury poisoning.

Many government-sponsored studies have tried to rule out thimerosal's role in autism but parents and autism support organizations have not been convinced, questioning the impartiality and accuracy of the studies.

E-mails circulated by organizations including ABOARD have accused American Academy of Pediatrics' lobbyists of working to remove environmental research language from the bill.

Marjorie Tharp, a spokeswoman for the academy in Washington, said the organization has not taken a position on the legislation and is not lobbying for or against it.

"The American Academy of Pediatrics (AAP) supports ongoing research to determine the cause or causes of autism, to improve screening, diagnosis and treatment standards and to find ways to prevent it," she said.

A spokesman for the National Institutes of Health declined to comment on the bill, noting that it was NIH policy not to take a position on pending legislation.

A Santorum spokesman said the bill's language is being finalized among members of the Senate's Health, Education, Labor and Pensions Committee, but he said provisions for environmental research will remain in the bill.

"We absolutely are keeping in the environmental research," said Traynham, Santorum's director of communications.

However, he said research into thimerosal and vaccines likely won't be mentioned in the bill because it is unusual for legislation to be that specific in identifying research topics.

"It is preferred to let the science lead where it leads, not exclude any possibilities or draw any preconclusions," Traynham said.

He noted that it is very rare for Congress to get involved in disease-specific legislation, and that the bill is unlikely to pass unless it is widely supported by the autism community.

"They (Congress) won't go near this with a 10-foot pole if there is not a consensus," Traynham said.

Traynham said Santorum hopes the committee will approve the Combating Autism Act in the upcoming weeks and that it will go to the entire Senate for a vote.

"We strongly believe something needs to be done about autism," he said. "(The legislation) is timely and very much needed."

It couldn't come too soon for Shelby Hainan and her son, Tyler.

"They're not talked about as much as other special needs kids," Hainan said of autistic children. "If you've got a mental retardation diagnosis, you've got it made. They have the facilities and services for them.

"I'm always fighting somebody for him," she said.

She gazed around her modest home, where she uses dog leashes to secure her kitchen cabinets, locks every door and has cleared the shelves of knickknacks to prevent Tyler from smashing valuables or smearing food on himself.

"You can't leave him alone for 20 seconds or it's a disaster," Hainan said. "But I'm crazy about him. I'd have him all over again."

About autism

Autism is a developmental disorder associated with a wide range of behavioral, communication and learning problems. It is classified under the umbrella of autism spectrum disorders, which include Aspergers syndrome and pervasive-development disorder as well as classic autism.

Part of the difficulty in diagnosing and treating autism lies in the disparity in symptoms.

Some autistic children never speak while others can talk normally. Some throw tantrums over something as simple as a missing puzzle piece while others rarely react to their environment. Some have severe mental retardation while others have few learning problems.

Other characteristics include obsessive-compulsive tendencies, problems with sensory overload and self-stimulating behaviors such as hand-flapping, rocking and jumping.

Prevalence of autism

Although no national data exist that clearly show how common autism has become, research by the Centers for Disease Control and Prevention indicates that from 1 in 500 to 1 in 166 children are diagnosed with an autism spectrum disorder.

The CDC estimates 24,000 children are diagnosed with autism every year -- or about one child every 20 minutes.

Autism is more common than all other developmental disabilities except for mental retardation, which affects about 1 in 100 children.

Prevalence rates for other childhood disorders and illnesses include:

• Cerebral palsy: 1 in 350

• Diabetes: 1 in 400 to 500

• Cancer: 1 in 6,600.

Liz can be reached at lhayes@... or (724) 226-4680.

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