When her toddler son seemed not to notice a door slamming nearby during his checkup, Jo James thought nothing of it. Her husband, a Microsoft manager, also has an uncanny ability to block out his surroundings.
A check of Ben's hearing after a nurse's prompt found nothing amiss. It wasn't until two years and one perceptive Montessori teacher later that his parents finally learned the cause of Ben's obliviousness: autism.
"He didn't mix terribly well socially," Jo James, of Sammamish, recalled ruefully. "But then, what 2- 1/2-year-old boy does?"
Autism typically isn't diagnosed until after age 2. Yet it may be detectable even in infancy before a baby is old enough to display telltale traits such as social ineptitude and compulsive preoccupations. Pioneering research at the University of Washington during the 1990s, for example, found that trained observers can spot, with remarkable accuracy, kids who were later diagnosed with autism by viewing videos of their first birthdays.
Now UW researchers are aiming to decipher those early clues in hopes of short-circuiting autism before it becomes full-blown.
In January, they began a $11.3 million trial to identify latent signs of autism in infants for intensive behavioral therapy. It is the nation's first attempt to test a hypothesis that early intervention may actually prevent autism in high-risk infants by rewiring their brains.
"We know the brain has a lot of potential to respond" to the right stimulation, said Sara Webb, a research assistant professor of psychiatry and behavioral sciences and the principal investigator for the study at UW Autism Center.
The goal is "to teach parents to give the child that missing piece that he's not getting on his own."
The study's very premise that autism may need not be destiny has stirred unease and skepticism among some parents. They also fret that it may rekindle the discredited notion that autism is triggered by detached and unloving mothers.
"I object to the message that if parents don't rush out like headless chickens before the child is X age, they've lost them," said Lisa Rudy, a mother and autism advocate from Falmouth, Mass.
The implication is that "if only the mother spent more time bonding with the infant, that child will never develop autism," Rudy added.
But UW researchers say they're not laying any blame on parenting. The goal is akin to averting diabetes through vigilance in a person with a family history of the disease, said Annette Estes, associate director of the Autism Center and a study investigator.
"If you are at risk for diabetes, you look for signs," Estes said. With autism, the genetic "risk factors are present at birth. What we are doing is heightening the parents' awareness."
Though some parents report concerns early on, tiny babies by definition don't have autism. That's because they can't manifest such diagnostic symptoms as language deficits and repetitive rituals.
Yet researchers suspect that babies exhibit subtle clues that precede overt symptoms. For instance, healthy babies react visibly to changes in a person's expression, such as switching from cooing to a sad face. A baby who doesn't seem to register the change may warrant watching, Estes said.
"At 6 months, a baby has a limited repertoire of signs" of autism, she said. "The question is 'What are the real early signs?'"
To answer that, UW researchers will track 200 infant siblings, 6 months or younger, of kids with autism. The disorder's strong hereditary nature means that 10 or more of those babies will develop autism themselves. The odds for a typical American child are a little greater than 1 in 200.
The infants in the study will be randomly separated into two groups. Mothers in one group will be coached on engaging with their babies. Later, the children will receive up to 25 hours a week of a type of developmental intervention called the Denver Model that uses play to teach appropriate behaviors.
The other group will be monitored but not given treatment. All children will undergo regular brain imaging to measure brain activity during tasks.
In the UW researchers' view, autism is both congenital and perhaps avoidable.
Genetics is the main cause of autism, yet there are cases where one identical twin has it and the other does not. That leaves room for possible environmental causes, but none has yet been definitively isolated.
At the same time, researchers are learning that the brain is a dynamic organ, capable of forging new neural networks well beyond the womb. Just as playing the piano might form particular synaptic connections, Webb said, environmental manipulation could help calm a brain that is threatening to go haywire.
"The unknown is the family environment," Webb said. "We do not know if the amount or the quality of stimulation is the culprit."
That some families with autism reacted warily to the UW's study does not surprise Laura Schreibman, an autism investigator at the University of California, San Diego. Since it was first described in 1943, autism has largely remained a baffling challenge for parents and researchers alike.
In her book, "The Science and Fiction of Autism" (Harvard University Press, 2005), Schreibman debunks popular speculation about origins of and treatments for autism. They include the link to the measles/mumps/rubella vaccine (rejected by scientific consensus), chelation therapy, which is ridding the body of mercury and other metals (ineffective and potentially toxic) and the myth of the frigid "refrigerator" mother.
No cure has been found for autism. And only one type of therapy, behavioral intervention, has shown measurable, albeit mostly anecdotal, success in curbing outward signs of the disorder, Schreibman said.
"I feel so much for these poor parents," she said.
James, the Sammamish mother, wonders how she could have missed it.
As a first-time parent, she didn't know that healthy babies instinctively look up to share a laugh. She didn't notice that Ben never uttered the toddler's universal refrain: "Why?"
Ben, now 4 1/2, began behavioral therapy shortly after his diagnosis. He made quick strides. He has become more engaging and inquisitive, and sometimes even offers hugs.
Ben's brother, 15-month-old Hugh, is enrolled in the UW study to track whether he might share his sibling's affliction. That seems unlikely. Hugh loves to lock gazes with visitors, and expectantly crawls toward any interest that beckons.
Still, James said of her younger son, "You always have it in the back of your mind, 'Could it happen to him, too?'"
James is reassured that although Ben still has autism, his condition has become much less obvious. She doesn't know whether researchers can find a way to cure autism instead of merely masking it. But the distinction may not matter.
Tuesday, May 27, 2008
Crist signs autism health insurance coverage bill for Fla.
With the hope that early diagnosis and treatment of autism will lead to better lives for thousands of children and families, Gov. Charlie Crist signed legislation Tuesday that could force many large insurance plans to cover the increasingly diagnosed condition.
Former Miami Dolphins star and autism activist Dan Marino watched as Crist signed a bill that advocates have pushed for more than a decade - and said he hopes that it will lead other families without an NFL star's income to get some of the treatment that his son benefited from.
Marino's son Michael is now 20.
"He's in college, doing very well, and he's a direct result of early intervention," Marino said. "He's a direct result of occupational therapies, speech therapies, the things that you need to do at an early age."
He added: "It's given me chills actually, just thinking about the opportunity this is going to give so many children in Florida and so many families that have to deal with autism."
The new law calls for health insurance companies to negotiate agreements with the state on how they will cover diagnosis and treatment of autism-related disorders. If companies don't enter into such agreements, the state will require certain coverages by July of next year.
The coverage is capped at $36,000 a year, or $200,000 over a lifetime.
That's meant to help families like Ron Watson's. His 4-year-old son Dylan has autism.
For the next year until the coverage starts, his family will pay for the child's care out of pocket. But eventually, the program will be a huge help for Watson, who works as a lobbyist in Tallahassee for the Florida Dental Association.
"It will probably prevent me from having to sell my home or a car or max out my credit cards," Watson said. "Fortunately, we have stuck aside enough money where I think we should be good for a year. But I can't imagine all these families that for five, six, seven years have been spending $20,000, $30,000, $40,000 a year on medical services."
"This is a very happy day for an awful lot of people," said Crist.
But the measure only applies to large group insurance plans. That means families whose insurance is provided through a small employer, or who have an individual plan, may not benefit.
Sharon Wilpon still won't be able to afford the $600-a-week behavioral therapy for her 5-year-old son Benjamin because she has an individual insurance policy.
"It's a great first step and I'm glad it's going to help some," said Wilpon, of Cooper City, who attended an event with Crist at a Davie preschool. "The majority of people, it's not going to help. We still have a lot of work to do."
The bill's sponsor, Sen. Steve Geller, D-Cooper City, said the bill will only help about half of the people with insurance who need the coverage - and won't help anyone who doesn't have insurance at all. He's leaving the Legislature because of term limits, but hopes lawmakers will expand the initiative.
The measure also has a provision that allows insurers to negotiate deals with the state on how they might increase coverage for other developmental disabilities, but the provision doesn't carry any penalties for those that don't.
The bill is unusual in that the Republican-dominated Legislature has been largely unwilling in recent years to create new requirements on what insurance companies must cover. Insurers have argued, successfully, against such mandates by pointing to them as one of the main drivers of health costs.
Ironically, another bill Crist will sign this week is aimed at making cheap health insurance available to more people - precisely by removing such mandates. That bill, which Crist intends to sign Wednesday, will make cheap plans that aren't required to cover many of the current 50 or so mandates, such as coverage for mammograms, or certain cancer treatments.
Crist has battled with property insurance companies extensively in his year and a half in office. He said insurance companies should be covering autism because "it's the right thing."
"Many companies in our country do very, very well, and there's a time to give back," Crist said. "And this would be that time."
Former Miami Dolphins star and autism activist Dan Marino watched as Crist signed a bill that advocates have pushed for more than a decade - and said he hopes that it will lead other families without an NFL star's income to get some of the treatment that his son benefited from.
Marino's son Michael is now 20.
"He's in college, doing very well, and he's a direct result of early intervention," Marino said. "He's a direct result of occupational therapies, speech therapies, the things that you need to do at an early age."
He added: "It's given me chills actually, just thinking about the opportunity this is going to give so many children in Florida and so many families that have to deal with autism."
The new law calls for health insurance companies to negotiate agreements with the state on how they will cover diagnosis and treatment of autism-related disorders. If companies don't enter into such agreements, the state will require certain coverages by July of next year.
The coverage is capped at $36,000 a year, or $200,000 over a lifetime.
That's meant to help families like Ron Watson's. His 4-year-old son Dylan has autism.
For the next year until the coverage starts, his family will pay for the child's care out of pocket. But eventually, the program will be a huge help for Watson, who works as a lobbyist in Tallahassee for the Florida Dental Association.
"It will probably prevent me from having to sell my home or a car or max out my credit cards," Watson said. "Fortunately, we have stuck aside enough money where I think we should be good for a year. But I can't imagine all these families that for five, six, seven years have been spending $20,000, $30,000, $40,000 a year on medical services."
"This is a very happy day for an awful lot of people," said Crist.
But the measure only applies to large group insurance plans. That means families whose insurance is provided through a small employer, or who have an individual plan, may not benefit.
Sharon Wilpon still won't be able to afford the $600-a-week behavioral therapy for her 5-year-old son Benjamin because she has an individual insurance policy.
"It's a great first step and I'm glad it's going to help some," said Wilpon, of Cooper City, who attended an event with Crist at a Davie preschool. "The majority of people, it's not going to help. We still have a lot of work to do."
The bill's sponsor, Sen. Steve Geller, D-Cooper City, said the bill will only help about half of the people with insurance who need the coverage - and won't help anyone who doesn't have insurance at all. He's leaving the Legislature because of term limits, but hopes lawmakers will expand the initiative.
The measure also has a provision that allows insurers to negotiate deals with the state on how they might increase coverage for other developmental disabilities, but the provision doesn't carry any penalties for those that don't.
The bill is unusual in that the Republican-dominated Legislature has been largely unwilling in recent years to create new requirements on what insurance companies must cover. Insurers have argued, successfully, against such mandates by pointing to them as one of the main drivers of health costs.
Ironically, another bill Crist will sign this week is aimed at making cheap health insurance available to more people - precisely by removing such mandates. That bill, which Crist intends to sign Wednesday, will make cheap plans that aren't required to cover many of the current 50 or so mandates, such as coverage for mammograms, or certain cancer treatments.
Crist has battled with property insurance companies extensively in his year and a half in office. He said insurance companies should be covering autism because "it's the right thing."
"Many companies in our country do very, very well, and there's a time to give back," Crist said. "And this would be that time."
Ga. family challenges federal vaccine law
Stefan Ferrari's parents say he was a talkative toddler until he got a round of booster shots with a mercury preservative. Now age 10, he hasn't spoken since those shots.
The Ferrari family asked the Georgia Supreme Court on Tuesday to rule that vaccine maker American Home Products Corp. can be held liable for damages in a civil case. The family believes they can prove that thimerosal, the mercury-based preservative, caused Ferrari's disability.
Attorneys for American Home Products argued that a 1986 federal law bans vaccine manufacturers from being held liable in civil courts for vaccine-related injuries or deaths if they were spurred by "unavoidable" side effects, properly prepared and accompanied with directions and warnings.
The case has drawn the ire of the vaccine industry as well as powerful right-leaning lobbying groups from the U.S. Chamber of Commerce to the conservative Pacific Legal Foundation.
Seven other state courts have ruled that the federal laws pre-empt any state law that might give families the power to challenge the vaccine manufacturers. But the Georgia Court of Appeals became the first appellate court in the nation to rule that the federal law doesn't take precedence over state tort law.
An attorney for the vaccine maker told Georgia's high court that the federal law has helped make vaccines available throughout the U.S. Attorney Daniel Thomasch told the justices that other courts have concluded Congress wanted the law to pre-empt state law, in part so that manufacturers aren't subjected to a mishmash of different state standards.
Ferrari's attorney, Lanny Bridgers, contended the federal law was meant to "supplement, not displace, state tort law," and asked the court's seven justices not too be swayed by earlier legal decisions.
Families of autistic children have claimed in court that thimerosal is linked to autism, although government lawyers say the Centers for Disease Control and Prevention has rejected any link.
Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single doses. The CDC says single-dose flu shots currently are available only in limited quantities.
The Ferrari family asked the Georgia Supreme Court on Tuesday to rule that vaccine maker American Home Products Corp. can be held liable for damages in a civil case. The family believes they can prove that thimerosal, the mercury-based preservative, caused Ferrari's disability.
Attorneys for American Home Products argued that a 1986 federal law bans vaccine manufacturers from being held liable in civil courts for vaccine-related injuries or deaths if they were spurred by "unavoidable" side effects, properly prepared and accompanied with directions and warnings.
The case has drawn the ire of the vaccine industry as well as powerful right-leaning lobbying groups from the U.S. Chamber of Commerce to the conservative Pacific Legal Foundation.
Seven other state courts have ruled that the federal laws pre-empt any state law that might give families the power to challenge the vaccine manufacturers. But the Georgia Court of Appeals became the first appellate court in the nation to rule that the federal law doesn't take precedence over state tort law.
An attorney for the vaccine maker told Georgia's high court that the federal law has helped make vaccines available throughout the U.S. Attorney Daniel Thomasch told the justices that other courts have concluded Congress wanted the law to pre-empt state law, in part so that manufacturers aren't subjected to a mishmash of different state standards.
Ferrari's attorney, Lanny Bridgers, contended the federal law was meant to "supplement, not displace, state tort law," and asked the court's seven justices not too be swayed by earlier legal decisions.
Families of autistic children have claimed in court that thimerosal is linked to autism, although government lawyers say the Centers for Disease Control and Prevention has rejected any link.
Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single doses. The CDC says single-dose flu shots currently are available only in limited quantities.
Charges dropped against U.S. doctor accused of killing autistic British boy by giving him wrong drug
Criminal charges have been dropped against a U.S. doctor accused of causing the death of a British five-year-old autistic boy by giving him the wrong drug.
Dr Roy Kerry was trying to use chelation therapy on Abubakar Tariq Nadama in 2005 after his parents moved to the U.S. to seek treatment for his autism.
Chelation therapy, approved in the U.S. for treatment for acute heavy metal poisoning, is regarded by some as a promising treatment for autism.
The U.S. drugs authority disagrees and Kerry was charged last year with involuntary manslaughter, endangering the welfare of a child and reckless endangerment
However, yesterday a judge in Pittsburgh, Philadelphia, allowed the district attorney of Butler County to drop charges.
Kerry, 70, still faces a civil lawsuit from Abubakar's parents, Mawra and Rufai Nadama, who have returned to Britain since their son's death.
In a petition, prosecutor William Fullerton asked that the charges be dropped after reassessing the merits of the case and "given the existence of additional and more germane judicial avenues for addressing the conduct of Dr Kerry".
Kerry had surrendered his license during the case, but it will now be reinstated, a U.S. State Department spokeswoman said.
The boy went into cardiac arrest in Kerry's office on August 23, 2005, immediately after receiving chelation therapy.
The Centres for Disease Control and Prevention (CDC), which investigated Abubakar's death, has said he was given a synthetic amino acid called Disodium EDTA instead of Calcium Disodium EDTA. Both are odourless, colorless liquids and may have been confused, the CDC found.
The Department of State also contended Kerry prescribed an IV push - giving the drugs in one dose intravenously instead of over a period of time - despite warnings that it could be lethal.
Kerry's lawyer, Al Lindsay, denied the drug caused the boy's death.
He said yesterday that the drug given was not the wrong drug, as prosecutors contended, though he said it was not the "preferred" drug. He also said it was not administered incorrectly.
Mr Lindsay said Abubakar died of a lack of oxygen to the brain, caused by a heart problem not associated with the drug.
"There was a lot of misinformation that was out there and we were anxious to present it to a jury," he said. "But the truth of the matter is, we're obviously grateful that the district attorney took this position."
John Gismondi, who represents the family in the civil case, said, "I don't agree with the decision and we're disappointed. But I respect that the district attorney is the boss of the criminal case."
He maintains Kerry acted improperly. "It was the wrong drug, given the wrong way," Mr Gismondi said.
Dr Roy Kerry was trying to use chelation therapy on Abubakar Tariq Nadama in 2005 after his parents moved to the U.S. to seek treatment for his autism.
Chelation therapy, approved in the U.S. for treatment for acute heavy metal poisoning, is regarded by some as a promising treatment for autism.
The U.S. drugs authority disagrees and Kerry was charged last year with involuntary manslaughter, endangering the welfare of a child and reckless endangerment
However, yesterday a judge in Pittsburgh, Philadelphia, allowed the district attorney of Butler County to drop charges.
Kerry, 70, still faces a civil lawsuit from Abubakar's parents, Mawra and Rufai Nadama, who have returned to Britain since their son's death.
In a petition, prosecutor William Fullerton asked that the charges be dropped after reassessing the merits of the case and "given the existence of additional and more germane judicial avenues for addressing the conduct of Dr Kerry".
Kerry had surrendered his license during the case, but it will now be reinstated, a U.S. State Department spokeswoman said.
The boy went into cardiac arrest in Kerry's office on August 23, 2005, immediately after receiving chelation therapy.
The Centres for Disease Control and Prevention (CDC), which investigated Abubakar's death, has said he was given a synthetic amino acid called Disodium EDTA instead of Calcium Disodium EDTA. Both are odourless, colorless liquids and may have been confused, the CDC found.
The Department of State also contended Kerry prescribed an IV push - giving the drugs in one dose intravenously instead of over a period of time - despite warnings that it could be lethal.
Kerry's lawyer, Al Lindsay, denied the drug caused the boy's death.
He said yesterday that the drug given was not the wrong drug, as prosecutors contended, though he said it was not the "preferred" drug. He also said it was not administered incorrectly.
Mr Lindsay said Abubakar died of a lack of oxygen to the brain, caused by a heart problem not associated with the drug.
"There was a lot of misinformation that was out there and we were anxious to present it to a jury," he said. "But the truth of the matter is, we're obviously grateful that the district attorney took this position."
John Gismondi, who represents the family in the civil case, said, "I don't agree with the decision and we're disappointed. But I respect that the district attorney is the boss of the criminal case."
He maintains Kerry acted improperly. "It was the wrong drug, given the wrong way," Mr Gismondi said.
Thursday, May 22, 2008
Autism's mysteries remain as numbers grow
ELLICOTT CITY, Maryland (CNN) -- It remains one of the greatest mysteries of medicine. Although autism will be diagnosed in more than 25,000 U.S. children this year, more than new pediatric cases of AIDS, diabetes and cancer combined, scientists and doctors still know very little about the neurological disorder.
Unlike childhood diabetes or pediatric leukemia, there is no blood test, no scan, no image that can detect autism. Diagnosis relies totally on behavioral observation and screening. And that's not easy.
According to the National Institute of Neurological Disorders and Stroke, three distinctive behaviors characterize autism: lack of social interaction, problems with verbal and nonverbal communication, and repetitive behaviors or narrow, obsessive interests. But children with autism display these symptoms in many different ways, some as mild as avoiding eye contact, while others are totally immersed in a world of their own.
Dr. Gary Goldstein, president of Kennedy Krieger Institute, one of the leading U.S. facilities for autism research and treatment, says although doctors know more about autism than ever, plenty of questions remain unanswered. Over the past few years, it has become clear that genetics play a big role in the development of autism. But researchers believe something -- a trigger -- sets off autism in a child.
"It's a combination of being genetically vulnerable, and then having some kind of social or toxic exposure that tips you over," Goldstein says. If scientists find that trigger, they could find the missing piece of the autism puzzle.
It's that missing puzzle piece that frustrates families with autistic children. When the Gaston triplets of Ellicott City, Maryland, were born seven years ago, their parents, Lynn and Randy, were thrilled. For years, they had been trying to have children. After in vitro fertilization, Lynn gave birth to identical twins, Hunter and Nicholas, and a fraternal brother named Zachary. Though they were born prematurely, they grew to be healthy, happy babies. Then something changed.
At around 18 months, the boys began to display unusual behaviors. Zach became compulsive, lined up cereal boxes and toys; he wouldn't socialize and kept to himself. Hunter would roam the house at night and scream at the top of his lungs. Nick just stopped talking.
Lynn asked her pediatrician about it. Her sons' doctor said she was overreacting and they should wait and see. But Lynn and Randy were sure there was something wrong with their children. It was frustrating for Lynn, who watched her children change every day before her eyes. "It was almost as if somebody turned the switch off. It was like the first 18 months of their lives didn't happen."
As months passed, the Gastons became frustrated as doctor after doctor told them to wait. That was unfortunate, because doctors now know that the sooner autism is diagnosed, the better chance the child has for getting successful treatment.
"Early intervention is key, because brain development starts before birth," says Dr. Pat Levitt, director of the Vanderbilt Kennedy Center for Research on Human Development in Nashville, Tennessee.
"During the ages of 0 to 5 years, there is a tremendous amount of change that occurs in the brain and brain chemistry."
In October, the American Academy of Pediatrics set up new guidelines to help pediatricians recognize the early signs of autism, in order to diagnose the disorder and get children into treatment as soon as possible.
Unfortunately, that didn't happen for the Gastons. Their boys were 4 years old before doctors at Kennedy Krieger confirmed the family's fears. All three sons had some variation of autism.
The Gastons had never heard of autism before their sons were born. Now they were raising three autistic children. That was tough enough, but even after the diagnosis, it was hard to find any information on the condition. That's because until recently, very little information on autistic children has been widely available. The Centers for Disease Control and Prevention have been collecting data only since 2001, the year the Gaston triplets were born.
Lynn expressed her frustration: "It's not like you can look up autism in the phone book. I couldn't go to the Yellow Pages and find a doctor, and didn't even know what doctor to go see. I thought my pediatrician was going to handle all this."
The Gastons keep asking themselves, "Where is the trigger?" They've each looked into their family history and found no autism.
Some parents believe that thimerosal, a preservative found in childhood vaccines that virtually every child gets, causes autism, because many children were diagnosed after they were vaccinated. But most medical experts increasingly doubt that theory, because even though the chemical has been removed from virtually all vaccines, the number of cases of autism is rising.
"You remove thimerosal from all but the flu vaccine, which isn't given to children under 6 months of age, and the incidence of autism only increases. So you just have piece of evidence after piece of evidence after piece of evidence that really disproves this notion," said Dr. Paul Offit, chief of the Infectious Diseases Division at Children's Hospital of Philadelphia, Pennsylvania.
Although the Gastons don't express their opinions on vaccines, Randy makes a point: "There's something that's affecting these children at that age, and it's unfortunate that families are left to their own devices to find out what is going on."
For now the Gastons remain dedicated to getting their sons the best care possible, which can be expensive. They sold their house in order to pay bills for therapy and doctors that total in the hundreds of thousand of dollars.
They are also involved in autism awareness groups and try to help other parents of autistic children understand what their children are going through. Just recently they shot a public service announcement to promote a new project developed by the Kennedy Krieger Institute, called IAN, or interactive autism network, an online project that can help autism researchers link with families of autistic children as well as with other scientists. The hope is that IAN will alert families to local and national autism research projects they can participate in.
But minus the projects and the doctors and the therapists, the Gastons, like many families with autistic children, believe it all comes down to the attention they give their children that makes the real difference.
To say it's been difficult for the Gastons is an understatement. But above all, they love each other and work to give their children as much happiness as possible.
As Randy Gaston says while Zach turns to give him a hug and a smile, "The one thing he has to know for the rest of his life is that I did everything for him. That's what it comes down to. I love him."
Unlike childhood diabetes or pediatric leukemia, there is no blood test, no scan, no image that can detect autism. Diagnosis relies totally on behavioral observation and screening. And that's not easy.
According to the National Institute of Neurological Disorders and Stroke, three distinctive behaviors characterize autism: lack of social interaction, problems with verbal and nonverbal communication, and repetitive behaviors or narrow, obsessive interests. But children with autism display these symptoms in many different ways, some as mild as avoiding eye contact, while others are totally immersed in a world of their own.
Dr. Gary Goldstein, president of Kennedy Krieger Institute, one of the leading U.S. facilities for autism research and treatment, says although doctors know more about autism than ever, plenty of questions remain unanswered. Over the past few years, it has become clear that genetics play a big role in the development of autism. But researchers believe something -- a trigger -- sets off autism in a child.
"It's a combination of being genetically vulnerable, and then having some kind of social or toxic exposure that tips you over," Goldstein says. If scientists find that trigger, they could find the missing piece of the autism puzzle.
It's that missing puzzle piece that frustrates families with autistic children. When the Gaston triplets of Ellicott City, Maryland, were born seven years ago, their parents, Lynn and Randy, were thrilled. For years, they had been trying to have children. After in vitro fertilization, Lynn gave birth to identical twins, Hunter and Nicholas, and a fraternal brother named Zachary. Though they were born prematurely, they grew to be healthy, happy babies. Then something changed.
At around 18 months, the boys began to display unusual behaviors. Zach became compulsive, lined up cereal boxes and toys; he wouldn't socialize and kept to himself. Hunter would roam the house at night and scream at the top of his lungs. Nick just stopped talking.
Lynn asked her pediatrician about it. Her sons' doctor said she was overreacting and they should wait and see. But Lynn and Randy were sure there was something wrong with their children. It was frustrating for Lynn, who watched her children change every day before her eyes. "It was almost as if somebody turned the switch off. It was like the first 18 months of their lives didn't happen."
As months passed, the Gastons became frustrated as doctor after doctor told them to wait. That was unfortunate, because doctors now know that the sooner autism is diagnosed, the better chance the child has for getting successful treatment.
"Early intervention is key, because brain development starts before birth," says Dr. Pat Levitt, director of the Vanderbilt Kennedy Center for Research on Human Development in Nashville, Tennessee.
"During the ages of 0 to 5 years, there is a tremendous amount of change that occurs in the brain and brain chemistry."
In October, the American Academy of Pediatrics set up new guidelines to help pediatricians recognize the early signs of autism, in order to diagnose the disorder and get children into treatment as soon as possible.
Unfortunately, that didn't happen for the Gastons. Their boys were 4 years old before doctors at Kennedy Krieger confirmed the family's fears. All three sons had some variation of autism.
The Gastons had never heard of autism before their sons were born. Now they were raising three autistic children. That was tough enough, but even after the diagnosis, it was hard to find any information on the condition. That's because until recently, very little information on autistic children has been widely available. The Centers for Disease Control and Prevention have been collecting data only since 2001, the year the Gaston triplets were born.
Lynn expressed her frustration: "It's not like you can look up autism in the phone book. I couldn't go to the Yellow Pages and find a doctor, and didn't even know what doctor to go see. I thought my pediatrician was going to handle all this."
The Gastons keep asking themselves, "Where is the trigger?" They've each looked into their family history and found no autism.
Some parents believe that thimerosal, a preservative found in childhood vaccines that virtually every child gets, causes autism, because many children were diagnosed after they were vaccinated. But most medical experts increasingly doubt that theory, because even though the chemical has been removed from virtually all vaccines, the number of cases of autism is rising.
"You remove thimerosal from all but the flu vaccine, which isn't given to children under 6 months of age, and the incidence of autism only increases. So you just have piece of evidence after piece of evidence after piece of evidence that really disproves this notion," said Dr. Paul Offit, chief of the Infectious Diseases Division at Children's Hospital of Philadelphia, Pennsylvania.
Although the Gastons don't express their opinions on vaccines, Randy makes a point: "There's something that's affecting these children at that age, and it's unfortunate that families are left to their own devices to find out what is going on."
For now the Gastons remain dedicated to getting their sons the best care possible, which can be expensive. They sold their house in order to pay bills for therapy and doctors that total in the hundreds of thousand of dollars.
They are also involved in autism awareness groups and try to help other parents of autistic children understand what their children are going through. Just recently they shot a public service announcement to promote a new project developed by the Kennedy Krieger Institute, called IAN, or interactive autism network, an online project that can help autism researchers link with families of autistic children as well as with other scientists. The hope is that IAN will alert families to local and national autism research projects they can participate in.
But minus the projects and the doctors and the therapists, the Gastons, like many families with autistic children, believe it all comes down to the attention they give their children that makes the real difference.
To say it's been difficult for the Gastons is an understatement. But above all, they love each other and work to give their children as much happiness as possible.
As Randy Gaston says while Zach turns to give him a hug and a smile, "The one thing he has to know for the rest of his life is that I did everything for him. That's what it comes down to. I love him."
Sunday, May 11, 2008
Families will make case for vaccine link to autism
WASHINGTON - Families claiming that a mercury-based preservative in vaccines triggers autism will challenge mainstream medicine Monday as they take their case to a federal court.
They seek vindication and financial redress from a government fund that helps people injured by shots.
Two 10-year-old boys from Portland, Ore., will serve as test cases that determine whether the children and their families in similar situations should be compensated. Attorneys for the boys will attempt to show the boys were happy, healthy and developing normally. But, after being exposed to vaccines with thimerosal, they began to regress and show symptoms of autism.
Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single-doses. The CDC says single-dose flu shots currently are available only in limited quantities. In 2004, a committee with the Institute of Medicine concluded there was no credible evidence that vaccines containing thimerosal caused autism.
Overall, nearly 4,900 families have filed claims with the U.S. Court of Claims alleging that vaccines caused autism and other neurological problems in their children. Lawyers for the families will present three different theories of how vaccines caused autism.
The Office of Special Masters of the claims court has instructed the plaintiffs to designate three test cases for each of the three theories — nine cases in all — and has assigned three special masters to handle the cases. Three cases in the first category were heard last year, but no decisions have been reached.
The two cases beginning Monday are among the three that focus on the second theory of causation: that thimerosal-containing vaccines alone cause autism. The plaintiff in the third case originally scheduled for hearing this month has withdrawn and lawyers and court officials are working to agree on substitute case.
Hearings in the test cases for the third theory of causation are scheduled in mid-September.
Lawyers for the petitioning families in the cases being heard this month say they will present evidence that injections with thimerosal deposit a form of mercury in the brain. That mercury excites certain brain cells that stay chronically activated trying to get rid of the intrusion.
"In some kids, there's enough of it that it sets off this chronic neuroinflammatory pattern that can lead to regressive autism," said attorney Mike Williams.
In the end, the families' attorneys hope to convince the special master hearing their case that thimerosal belongs on the list of causes for the inflammation that leads to regressive autism.
To win, the attorneys for the two boys, William Mead and Jordan King, will have to show that it"s more likely than not that the vaccine actually caused the injury.
Many members of the medical community are skeptical of the families' claims. They worry that the claims about the dangers of vaccines could cause some people to forgo vaccines that prevent illness.
"I think that what's so endearing to me about the anti-vaccine people is they're perfectly willing to go from one hypothesis to the next without a backward glance," said Dr. Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia.
Autism is a developmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others. Dr. Andrew Gerber, a psychiatrist, said that medical experts don't have a comprehensive understanding of what causes autism, but they do know there is a strong hereditary component.
Toxins from the environment could play a role, but currently, data does not support that they do, Gerber said.
Arguments are scheduled to go on throughout the month. A final decision could take several more months. Claims that are successful would result in compensation taking into account lost earnings after age 18 and up to $250,000 for pain and suffering.
The families or the federal government can also appeal the decision of the special master to the Court of Federal Claims or to a federal appeals court.
The court Web site says more than 12,500 claims have been filed since creation of the program in 1987, including more than 5,300 autism cases, and that more than $1.7 billion has been paid in claims. It says there is now more than $2.7 billion a trust fund supported by an excise tax on each dose of vaccine covered by the program.
They seek vindication and financial redress from a government fund that helps people injured by shots.
Two 10-year-old boys from Portland, Ore., will serve as test cases that determine whether the children and their families in similar situations should be compensated. Attorneys for the boys will attempt to show the boys were happy, healthy and developing normally. But, after being exposed to vaccines with thimerosal, they began to regress and show symptoms of autism.
Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single-doses. The CDC says single-dose flu shots currently are available only in limited quantities. In 2004, a committee with the Institute of Medicine concluded there was no credible evidence that vaccines containing thimerosal caused autism.
Overall, nearly 4,900 families have filed claims with the U.S. Court of Claims alleging that vaccines caused autism and other neurological problems in their children. Lawyers for the families will present three different theories of how vaccines caused autism.
The Office of Special Masters of the claims court has instructed the plaintiffs to designate three test cases for each of the three theories — nine cases in all — and has assigned three special masters to handle the cases. Three cases in the first category were heard last year, but no decisions have been reached.
The two cases beginning Monday are among the three that focus on the second theory of causation: that thimerosal-containing vaccines alone cause autism. The plaintiff in the third case originally scheduled for hearing this month has withdrawn and lawyers and court officials are working to agree on substitute case.
Hearings in the test cases for the third theory of causation are scheduled in mid-September.
Lawyers for the petitioning families in the cases being heard this month say they will present evidence that injections with thimerosal deposit a form of mercury in the brain. That mercury excites certain brain cells that stay chronically activated trying to get rid of the intrusion.
"In some kids, there's enough of it that it sets off this chronic neuroinflammatory pattern that can lead to regressive autism," said attorney Mike Williams.
In the end, the families' attorneys hope to convince the special master hearing their case that thimerosal belongs on the list of causes for the inflammation that leads to regressive autism.
To win, the attorneys for the two boys, William Mead and Jordan King, will have to show that it"s more likely than not that the vaccine actually caused the injury.
Many members of the medical community are skeptical of the families' claims. They worry that the claims about the dangers of vaccines could cause some people to forgo vaccines that prevent illness.
"I think that what's so endearing to me about the anti-vaccine people is they're perfectly willing to go from one hypothesis to the next without a backward glance," said Dr. Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia.
Autism is a developmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others. Dr. Andrew Gerber, a psychiatrist, said that medical experts don't have a comprehensive understanding of what causes autism, but they do know there is a strong hereditary component.
Toxins from the environment could play a role, but currently, data does not support that they do, Gerber said.
Arguments are scheduled to go on throughout the month. A final decision could take several more months. Claims that are successful would result in compensation taking into account lost earnings after age 18 and up to $250,000 for pain and suffering.
The families or the federal government can also appeal the decision of the special master to the Court of Federal Claims or to a federal appeals court.
The court Web site says more than 12,500 claims have been filed since creation of the program in 1987, including more than 5,300 autism cases, and that more than $1.7 billion has been paid in claims. It says there is now more than $2.7 billion a trust fund supported by an excise tax on each dose of vaccine covered by the program.
Friday, May 9, 2008
SPECIAL REPORT: Life After An Autism Diagnosis; Special Diets Pt. 3
The cause of most cases of autism remains a constant source of friction between doctors and parents of autistic children. A small percent of cases - between 2 and 6 percent-- are believed to be caused by a genetic condition called fragile x-syndrome. Researchers are also looking into the possibility that vaccines can trigger the disorder in some children.
The case of 9 year old Hannah Poling has re-ignited the debate surrounding a possible link between Autism and common childhood vaccines. In march, a Federal Court ruled that vaccines did cause the Autism of the 9 year old Georgia girl who had an underlying cell disorder.
Doctor Kyle Vandyke has a child with severe Autism. He's been a doctor for nearly 15 years and is a trained a DAN Practitioner. "DAN Practitioners are traditional doctors that have gone through the Defeat Autism Now Training Course," says Dr. VanDyke. Doctor Vandyke says DAN doctors focus on treating Autism. Many of his patients have expressed concern about vaccines. "Just from talking with dozens and dozens of parents certainty it is a factor in a lot of kids. A lot of parents had normally developing kids, they had certain shots and saw their kids regress after that."
Tracy Graveen of Edgar believes an ingredient in a vaccine may have contributed to her 4 year son Jaxon's Autism diagnosis. She says at 16 months old he suddenly stopped talking. "It was like someone flipped the switch after he got his MMR, he woke up the next morning a completely different child" says Graveen.
Doctor Vandyke says researchers are still exploring the possible link between vaccines and Autism but until someone figures out how to prevent autism - he's focusing on *treating* it - with a Bio-Medical Approach that removes certain foods from a child's diet. "90% of the children I’ve seen in my clinic have chronic diarrhea and chronic constipation. When you take away the gluten and the casein those problems get better or are completely resolved and as their GI problems get better their behavior gets better."
Doctor Vandyke recommends parents try the GFCG Diet because children with autism often have problems digesting the gluten found in wheat products and the casein found in dairy. He says he has seen positive results first hand with his son. "On my way home I bought a gallon of soy milk and gave him a bottle instead of regular milk and with in 24 hours he was aware and alert. It was a remarkable change and that was the only thing I had done"
Doctor Vandyke is not Jaxon's doctor but the Graveen's are trying the biomedical approach. Jaxon's mom says they noticed a change in Jaxon after two weeks. "The few weeks were really tough but two weeks later we actually able to see him say sentences things we never imagined would happen for years."
Jaxon's mom says right now he only eats about 6 things-- mainly peas and hamburgers but he continues to develop. "I do believe that there is a cure and I see it happening everyday in our own house and it's the best feeling in the world." As research continues into the possible link between immunization and autism - many pediatricians worry families will skip vaccines in hopes of avoiding autism.
But they warn that could lead to a resurgence in many dangerous diseases those vaccines prevent.
The case of 9 year old Hannah Poling has re-ignited the debate surrounding a possible link between Autism and common childhood vaccines. In march, a Federal Court ruled that vaccines did cause the Autism of the 9 year old Georgia girl who had an underlying cell disorder.
Doctor Kyle Vandyke has a child with severe Autism. He's been a doctor for nearly 15 years and is a trained a DAN Practitioner. "DAN Practitioners are traditional doctors that have gone through the Defeat Autism Now Training Course," says Dr. VanDyke. Doctor Vandyke says DAN doctors focus on treating Autism. Many of his patients have expressed concern about vaccines. "Just from talking with dozens and dozens of parents certainty it is a factor in a lot of kids. A lot of parents had normally developing kids, they had certain shots and saw their kids regress after that."
Tracy Graveen of Edgar believes an ingredient in a vaccine may have contributed to her 4 year son Jaxon's Autism diagnosis. She says at 16 months old he suddenly stopped talking. "It was like someone flipped the switch after he got his MMR, he woke up the next morning a completely different child" says Graveen.
Doctor Vandyke says researchers are still exploring the possible link between vaccines and Autism but until someone figures out how to prevent autism - he's focusing on *treating* it - with a Bio-Medical Approach that removes certain foods from a child's diet. "90% of the children I’ve seen in my clinic have chronic diarrhea and chronic constipation. When you take away the gluten and the casein those problems get better or are completely resolved and as their GI problems get better their behavior gets better."
Doctor Vandyke recommends parents try the GFCG Diet because children with autism often have problems digesting the gluten found in wheat products and the casein found in dairy. He says he has seen positive results first hand with his son. "On my way home I bought a gallon of soy milk and gave him a bottle instead of regular milk and with in 24 hours he was aware and alert. It was a remarkable change and that was the only thing I had done"
Doctor Vandyke is not Jaxon's doctor but the Graveen's are trying the biomedical approach. Jaxon's mom says they noticed a change in Jaxon after two weeks. "The few weeks were really tough but two weeks later we actually able to see him say sentences things we never imagined would happen for years."
Jaxon's mom says right now he only eats about 6 things-- mainly peas and hamburgers but he continues to develop. "I do believe that there is a cure and I see it happening everyday in our own house and it's the best feeling in the world." As research continues into the possible link between immunization and autism - many pediatricians worry families will skip vaccines in hopes of avoiding autism.
But they warn that could lead to a resurgence in many dangerous diseases those vaccines prevent.
SPECIAL REPORT: Life After An Autism Diagnosis; Special Diets
Learning that your child has autism can be heartbreaking news.
Since cases of autism are on the rise - it's a diagnosis many families in our area are dealing with.
But the good news is that many autistic kids are having great success with alternative therapies. A Weston family trying a bio-medical approach to their autistic son's diet.
Two year old Troy is the Esker's only child and his father Cory Esker, describes him as a daddy's boy.
Troy's parents say they noticed his speech delay and learned about his autism diagnosis in December of 2007. "First it was a little bit of a shock but after a while you just get used to it and it's just another challenge in life," says Esker.
The Esker's say doctors told them to immediately put troy in therapy. They tried to, but several programs they applied for had waiting lists with wait times as long as two years. "when you talk about early intervention some times i don't think those programs are really effective because of the waiting... Early intervention is like now." Says Troy's Mom Jamie.
The Eskers are trying a special diet and alternative therapy. He is on the Gluten Free, Casein Free Diet. He is also in an alternative therapy program called DIR Floor-time. Troy's mom says he is a blessing. To pay for his alternative therapy she says they've cut back on household items and delayed family vacation plans.
Troy's dad says like most fathers, he dreams of playing sports with his son someday. No matter what the future holds, autism won't stop him from enjoying time with his son. "I make time for him, and when I get into it, I enjoy it more than anything in the world."
Since cases of autism are on the rise - it's a diagnosis many families in our area are dealing with.
But the good news is that many autistic kids are having great success with alternative therapies. A Weston family trying a bio-medical approach to their autistic son's diet.
Two year old Troy is the Esker's only child and his father Cory Esker, describes him as a daddy's boy.
Troy's parents say they noticed his speech delay and learned about his autism diagnosis in December of 2007. "First it was a little bit of a shock but after a while you just get used to it and it's just another challenge in life," says Esker.
The Esker's say doctors told them to immediately put troy in therapy. They tried to, but several programs they applied for had waiting lists with wait times as long as two years. "when you talk about early intervention some times i don't think those programs are really effective because of the waiting... Early intervention is like now." Says Troy's Mom Jamie.
The Eskers are trying a special diet and alternative therapy. He is on the Gluten Free, Casein Free Diet. He is also in an alternative therapy program called DIR Floor-time. Troy's mom says he is a blessing. To pay for his alternative therapy she says they've cut back on household items and delayed family vacation plans.
Troy's dad says like most fathers, he dreams of playing sports with his son someday. No matter what the future holds, autism won't stop him from enjoying time with his son. "I make time for him, and when I get into it, I enjoy it more than anything in the world."
Seven's On Call with Dr. Jay Adlersberg
By Dr. Jay Adlersberg
NEW YORK (WABC) -- What are the best methods for teaching autistic children? Hundred of research projects are underway, looking for those answers.
One researcher here in New York is looking to the eyes for answers.
Seven's On Call with Dr. Jay Adlersberg.
The research is going on right now, and it is open to people who might want to take part, both people on the autism spectrum and anyone else simply interested in the subject.
The investigation might one day help educators and therapists learn more about how the brain of an autistic person works.
Faces tell us if someone appears happy, angry or sad, and they cue us how to act or react. But many children on the autism spectrum cannot read faces. Facial recognition and interpretation is a challenge.
Ten-year-old Phillip Cohen is helping Dr. Nim Tottenham find how and possibly why developmentally-challenged children have trouble reading faces. He is part of a study that is looking in how the brain works when someone looks at a face.
Phillip has a diagnosis that's on the autism spectrum.
"When he speaks to people, he doesn't focus," his mother, Marsha Rubin, said. "He gazes off in another direction, and especially for learning and academics, he has to be able to concentrate better and communicate better."
In the study, subjects like Phillip are quickly shown faces and prompted where to look, while a camera records where their eyes are looking.
But more information will come from their brain.
Phillip and people in the study will also be shown face pictures while in a functional MRI machine. In the test, the study subjects will look at faces while the MRI records their brain activity.
Dr. Tottenham will get information from the brain of autism spectrum people and ordinary people.
"The purpose of the study is to really ask, in childhood, what's going on between typical and atypical development in face processing," she said.
Dr. Tottenham hopes this research will answer question about possibly early intervention in children with autism, particularly, is there a window in which the brain could perhaps be trained.
Learning to read faces is an integral part of our social interaction with each and a difficult problem for many children who are developmentally different. Anyone between age 6 and age 40 can take part in the study.
NEW YORK (WABC) -- What are the best methods for teaching autistic children? Hundred of research projects are underway, looking for those answers.
One researcher here in New York is looking to the eyes for answers.
Seven's On Call with Dr. Jay Adlersberg.
The research is going on right now, and it is open to people who might want to take part, both people on the autism spectrum and anyone else simply interested in the subject.
The investigation might one day help educators and therapists learn more about how the brain of an autistic person works.
Faces tell us if someone appears happy, angry or sad, and they cue us how to act or react. But many children on the autism spectrum cannot read faces. Facial recognition and interpretation is a challenge.
Ten-year-old Phillip Cohen is helping Dr. Nim Tottenham find how and possibly why developmentally-challenged children have trouble reading faces. He is part of a study that is looking in how the brain works when someone looks at a face.
Phillip has a diagnosis that's on the autism spectrum.
"When he speaks to people, he doesn't focus," his mother, Marsha Rubin, said. "He gazes off in another direction, and especially for learning and academics, he has to be able to concentrate better and communicate better."
In the study, subjects like Phillip are quickly shown faces and prompted where to look, while a camera records where their eyes are looking.
But more information will come from their brain.
Phillip and people in the study will also be shown face pictures while in a functional MRI machine. In the test, the study subjects will look at faces while the MRI records their brain activity.
Dr. Tottenham will get information from the brain of autism spectrum people and ordinary people.
"The purpose of the study is to really ask, in childhood, what's going on between typical and atypical development in face processing," she said.
Dr. Tottenham hopes this research will answer question about possibly early intervention in children with autism, particularly, is there a window in which the brain could perhaps be trained.
Learning to read faces is an integral part of our social interaction with each and a difficult problem for many children who are developmentally different. Anyone between age 6 and age 40 can take part in the study.
Adults with autism to be audited
For the first time the government is to calculate the number of adults with autism in England.
Announcing the £500,000 project, Care Services Minister Ivan Lewis said autistic adults are too often abandoned by health and social services.
The National Autistic Society welcomed the move, saying it hopes it will mark a turning point in the way the needs of adults with autism are met.
The statistics will be used to form a national strategy.
The challenge for the researchers will be to make sure people whose autism has not yet been diagnosed are not overlooked.
In making the announcement, Ivan Lewis highlighted how limited the understanding of the condition still is.
"We still don't know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families.
"One of the key gaps in our knowledge is simple - we don't know how many people have the condition in any given area.
"That is why I am ordering a study to address this."
Lifelong disability
The National Autistic Society describes the condition as a complex disability affecting someone's development and a defect in the way the brain functions.
Asperger Syndrome is a form of autism where people sometimes have high intellectual and verbal abilities, but it is still very disabling, and people with it can find many ordinary daily activities such as cooking, shopping, handling money, making phone calls almost impossible.
Autism is often associated only with children, but it is a lifelong disability with no cure.
There has been academic research into the prevalence of autism amongst children in the UK and that suggests it is one in every 100.
Adults with autism told us they feel isolated and ignored
Mark Leve
National Autistic Society
Your experiences of autism
But until now, there has been no specific study into how many adults have the condition.
The group has been hard to measure partly because so many people have grown up before improvements in recognition and diagnosis; and some may have been labelled inappropriately as having mental health problems or learning difficulties or not acknowledged at all.
Academics at the University of Leicester will lead the research which will include a study of a sample of the adult population - a sort of mini census .
Their challenge will be to find some way of taking account of those adults who have not been diagnosed to achieve as much accuracy as possible.
Once the work is complete, the government will use the statistics to craft the first national strategy for adults with autism to be published next year.
The National Autistic Society has long campaigned for this research to be done and is enthusiastic about the move.
Chief Executive Mark Lever said: "This is great news for the thousands of adults with autism who told us they feel isolated and ignored.
"We are delighted that the government has listened and is taking decisive action. Today's announcement should mark a sea change in the way that the needs of people with autism are recognised and met.
"However, we will keep campaigning to ensure real change happens at ground level."
Geoffrey Maddrell, chairman of the charity Research Autism added: "This is an important first step towards understanding the scale of autism in the UK and will help to decide what next steps need to be taken to ensure people with the condition are supported and signposted toward approaches that will enhance their quality of life."
Announcing the £500,000 project, Care Services Minister Ivan Lewis said autistic adults are too often abandoned by health and social services.
The National Autistic Society welcomed the move, saying it hopes it will mark a turning point in the way the needs of adults with autism are met.
The statistics will be used to form a national strategy.
The challenge for the researchers will be to make sure people whose autism has not yet been diagnosed are not overlooked.
In making the announcement, Ivan Lewis highlighted how limited the understanding of the condition still is.
"We still don't know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families.
"One of the key gaps in our knowledge is simple - we don't know how many people have the condition in any given area.
"That is why I am ordering a study to address this."
Lifelong disability
The National Autistic Society describes the condition as a complex disability affecting someone's development and a defect in the way the brain functions.
Asperger Syndrome is a form of autism where people sometimes have high intellectual and verbal abilities, but it is still very disabling, and people with it can find many ordinary daily activities such as cooking, shopping, handling money, making phone calls almost impossible.
Autism is often associated only with children, but it is a lifelong disability with no cure.
There has been academic research into the prevalence of autism amongst children in the UK and that suggests it is one in every 100.
Adults with autism told us they feel isolated and ignored
Mark Leve
National Autistic Society
Your experiences of autism
But until now, there has been no specific study into how many adults have the condition.
The group has been hard to measure partly because so many people have grown up before improvements in recognition and diagnosis; and some may have been labelled inappropriately as having mental health problems or learning difficulties or not acknowledged at all.
Academics at the University of Leicester will lead the research which will include a study of a sample of the adult population - a sort of mini census .
Their challenge will be to find some way of taking account of those adults who have not been diagnosed to achieve as much accuracy as possible.
Once the work is complete, the government will use the statistics to craft the first national strategy for adults with autism to be published next year.
The National Autistic Society has long campaigned for this research to be done and is enthusiastic about the move.
Chief Executive Mark Lever said: "This is great news for the thousands of adults with autism who told us they feel isolated and ignored.
"We are delighted that the government has listened and is taking decisive action. Today's announcement should mark a sea change in the way that the needs of people with autism are recognised and met.
"However, we will keep campaigning to ensure real change happens at ground level."
Geoffrey Maddrell, chairman of the charity Research Autism added: "This is an important first step towards understanding the scale of autism in the UK and will help to decide what next steps need to be taken to ensure people with the condition are supported and signposted toward approaches that will enhance their quality of life."
Making strides for autism school in Southborough
SOUTHBOROUGH - When Linda and David Shaffer moved to Southborough 14 years ago, they knew nothing about the New England Center for Children (NECC), a nonprofit education center for children with autism.
But when their son, Harrison, was diagnosed with autism and eventually needed services beyond what public schools could provide, the Shaffers discovered that the best place for Harrison to go to school was virtually in their backyard.
"It was a pretty weird twist of fate," said Linda Shaffer. "But I could go on and on about the gains my son has made in the years he's been at NECC."
Harrison, 9, has spent three years at the school, just off Rte. 9, and has flourished in that time, his mother said. Tomorrow, his family and about 750 other supporters will give back to the school by participating in NECC's second annual 5K Walk/Run for Autism.
The event raised $140,000 last year, and NECC special events director Jennifer Eames expects it will pull in a similar amount this year. Money will go toward the school's annual fund to pay for gym and playground equipment, computers, residence upgrades and safety equipment for the school's aquatic center.
The Shaffer family has created a 10-person team for tomorrow's event, including Harrison's older sister, Alexandra, 11, and a set of grandparents from New Hampshire. The team has raised $4,100 so far.
More important, said Linda Shaffer, is to spread the word to other Southborough residents about NECC.
"So many people drive by the school and don't know what it's about," she said. "People should come out and meet these kids and their families."
For the Shaffer family, NECC has been a place where Harrison has responded to applied-behavioral analysis teaching techniques. He has learned how to tie his shoe, read, write, add and subtract.
"Harrison has done beautifully because of the school," Linda Shaffer said.
When Harrison started at NECC at age 6, he was at the skill level of an 18-month-old, she said. Now, at 9, he has the abilities of a five-year-old.
"Never in my wildest dreams did I envision him doing homework," said Shaffer. "If you saw Harrison three years ago you'd be like, 'Wow, this is amazing.' "
Harrison loves the outdoors, and recently won two Special Olympics medals for running and the softball shot-put. He'll probably enjoy walking the 3.1-mile loop tomorrow, his mother said.
"He can't really express himself with words," she said. "But his face says it all."
The 10 a.m. race starts and finishes near Town Hall, at 17 Common St., and will be followed by a celebration cookout with a band and an awards ceremony. It will be held rain or shine, and registration will start at 8:30 a.m.
But when their son, Harrison, was diagnosed with autism and eventually needed services beyond what public schools could provide, the Shaffers discovered that the best place for Harrison to go to school was virtually in their backyard.
"It was a pretty weird twist of fate," said Linda Shaffer. "But I could go on and on about the gains my son has made in the years he's been at NECC."
Harrison, 9, has spent three years at the school, just off Rte. 9, and has flourished in that time, his mother said. Tomorrow, his family and about 750 other supporters will give back to the school by participating in NECC's second annual 5K Walk/Run for Autism.
The event raised $140,000 last year, and NECC special events director Jennifer Eames expects it will pull in a similar amount this year. Money will go toward the school's annual fund to pay for gym and playground equipment, computers, residence upgrades and safety equipment for the school's aquatic center.
The Shaffer family has created a 10-person team for tomorrow's event, including Harrison's older sister, Alexandra, 11, and a set of grandparents from New Hampshire. The team has raised $4,100 so far.
More important, said Linda Shaffer, is to spread the word to other Southborough residents about NECC.
"So many people drive by the school and don't know what it's about," she said. "People should come out and meet these kids and their families."
For the Shaffer family, NECC has been a place where Harrison has responded to applied-behavioral analysis teaching techniques. He has learned how to tie his shoe, read, write, add and subtract.
"Harrison has done beautifully because of the school," Linda Shaffer said.
When Harrison started at NECC at age 6, he was at the skill level of an 18-month-old, she said. Now, at 9, he has the abilities of a five-year-old.
"Never in my wildest dreams did I envision him doing homework," said Shaffer. "If you saw Harrison three years ago you'd be like, 'Wow, this is amazing.' "
Harrison loves the outdoors, and recently won two Special Olympics medals for running and the softball shot-put. He'll probably enjoy walking the 3.1-mile loop tomorrow, his mother said.
"He can't really express himself with words," she said. "But his face says it all."
The 10 a.m. race starts and finishes near Town Hall, at 17 Common St., and will be followed by a celebration cookout with a band and an awards ceremony. It will be held rain or shine, and registration will start at 8:30 a.m.
Saturday, May 3, 2008
Autism 'Epidemic' Follows Increase in Special Education Funding, Shift in Diagnosis
A few decades ago, people probably would have said kids like Ryan Massey and Eddie Scheuplein were just odd. Or difficult.
Both boys are bright. But Ryan, 11, is hyper and prone to angry outbursts, sometimes trying to strangle another kid in his class who annoys him. Eddie, 7, has a strange habit of sticking his shirt in his mouth and sucking on it.
Both were diagnosed with a form of autism. And it's partly because of children like them that autism appears to be skyrocketing: In the latest estimate, as many as one in 150 children have some form of this disorder. Groups advocating more research money call autism "the fastest-growing developmental disability in the United States."
Indeed, doctors are concerned there are even more cases out there, unrecognized: The American Academy of Pediatrics last week stressed the importance of screening every kid — twice — for autism by age 2.
But many experts believe these unsociable behaviors were just about as common 30 or 40 years ago. The recent explosion of cases appears to be mostly caused by a surge in special education services for autistic children, and by a corresponding shift in what doctors call autism.
Autism has always been diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. For decades, the diagnosis was given only to kids with severe language and social impairments and unusual, repetitious behaviors.
Many children with severe autism hit themselves or others, don't speak and don't make eye contact.
Blake Dees, a 19-year-old from Suwanee, Ga., falls into that group. For the past eight years, he has been in a day program with intense services, but he still doesn't talk, he's not toilet-trained, and he has a history of trying to eat anything — even broken glass.
But he's not a typical case.
In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as "autism spectrum disorders."
The spectrum includes Asperger's syndrome and something called PDD-NOS (for Pervasive Developmental Disorder-Not Otherwise Specified). Some support groups report more than half of their families fall into these categories, but there is no commonly accepted scientific breakdown.
Gradually, there have been changes in parents' own perception of autism, the autism services schools provide, and the care that insurers pay for, experts say.
Eddie, of Buford, Ga., was initially diagnosed with obsessive-compulsive disorder, attention deficit hyperactivity disorder and other conditions. But the services he got in school were not very helpful.
His mother, Michelle, said a diagnosis of autism brought occupational therapy and other, better services.
"I do have to admit I almost like the idea of having the autistic label, at least over the other labels, because there's more help out there for you," said Scheuplein.
"The truth is there's a powerful incentive for physicians and schools to classify children in a way that gets services," said Dr. Edwin Trevathan of the U.S. Centers for Disease Control and Prevention.
Many with Asperger's and PDD-NOS succeed in school and do not — at first glance — have much in common with children like Blake Dees.
At a recent gathering of families with Asperger's children in the Atlanta area, parents told almost comical stories about kids who frequently pick their noses, douse food in ketchup or wear the same shirt day after day.
Such a frank, humorous exchange was once a rarity. Doctors for many years believed in the "refrigerator mom" theory, which held that autism was the result of being raised by a cold, unloving mother. The theory became discredited, but was difficult to dislodge from the popular conscience.
Even in the early 1980s, some parents were more comfortable with a diagnosis of mental retardation than autism, said Trevathan, director of the CDC's National Center on Birth Defects and Developmental Disabilities.
Today, parents are more likely to cringe at a diagnosis of mental retardation, which is sometimes equated to a feeble-mindedness and may obscure a child's potential.
And increasingly, professionals frown at the term: The special education journal Mental Retardation this year changed its name to Intellectual & Developmental Disabilities.
The editor said that "mentally retarded" is becoming passe and demeaning, much like the terms idiot, imbecile and moron — once used by doctors to describe varying degrees of mental retardation.
In contrast, autism has become culturally acceptable — and a ticket to a larger range of school services and accommodations.
In 1990, Congress added the word "autism" as a separate disability category to a federal law that guarantees special education services, and Education Department regulations have included a separate definition of autism since 1992.
Before that, children with autism were counted under other disabling conditions, such as mental retardation, said Jim Bradshaw, an education department spokesman.
The Social Security Administration also broadened its definition of disability to include spectrum disorders, like Asperger's.
Something else changed: The development of new stimulants and other medicines may have encouraged doctors to make diagnoses with the idea of treating them with these drugs.
Perception of the size of the problem changed, too.
Fourteen years ago, only 1 in 10,000 children were diagnosed with it. Prevalence estimates gradually rose to the current government estimate of one in 150.
That increase has been mirrored in school districts. Gwinnett County Public Schools — Georgia's largest school system — had eight classrooms for teaching autistic youngsters 13 years ago; today there are 180.
Some researchers suggest that as autism spectrum diagnoses have gone up, diagnoses of mild mental retardation have fallen.
U.S. Department of Education data show that the number of students with autism rose steadily, from about 42,500 in 1997 to nearly 225,000 in 2006. Meanwhile, the number of students counted as mentally retarded declined from about 603,000 to about 523,000.
CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.
Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)
Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.
"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.
Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90 percent of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50 percent of that money on potential environmental triggers, Goldstein said.
Whether it's because of genes or the environment (or both), autism has hit the Massey family hard. Chuck and Julia Massey, of Dacula, Ga., have three sons with Asperger's.
The youngest, Ryan, was first diagnosed after he was slow to develop speaking ability. His brothers — Trevor, 14, and Morgan, 16 — had learning and behavior problems and were later diagnosed with Asperger's, too.
All got special education services and were treated with medications. Morgan has improved, or matured, or both, and is now a social kid in mainstream classes at a Gwinnett County high school. Trevor seems to be making the same transition, his mother said.
Ryan is the most extreme. He still has uncontrollable tantrums and must attend an Asperger's-only sixth-grade classroom that teaches social skills along with traditional subjects.
In a recent interview at the family's home, Ryan acknowledged he still has anger control issues. One of the three other students in his class is particularly irritating. Ryan said the way he reacts is by "grabbing his throat."
But on this night, Ryan was calm. He described himself as happy, and paced the room telling jokes, like a nervous stand-up comedian. ("Why didn't the skeleton go to the party? He didn't have the guts," he said, eyes fixed on his audience.)
Having three Asperger's boys under one roof has at times been very intense, Massey said, noting a replaced dining room window.
Ryan acknowledged it's been educational living in a house full of Asperger's kids. Asked to name something he's learned from his brothers, he replied, "Swears."
Both boys are bright. But Ryan, 11, is hyper and prone to angry outbursts, sometimes trying to strangle another kid in his class who annoys him. Eddie, 7, has a strange habit of sticking his shirt in his mouth and sucking on it.
Both were diagnosed with a form of autism. And it's partly because of children like them that autism appears to be skyrocketing: In the latest estimate, as many as one in 150 children have some form of this disorder. Groups advocating more research money call autism "the fastest-growing developmental disability in the United States."
Indeed, doctors are concerned there are even more cases out there, unrecognized: The American Academy of Pediatrics last week stressed the importance of screening every kid — twice — for autism by age 2.
But many experts believe these unsociable behaviors were just about as common 30 or 40 years ago. The recent explosion of cases appears to be mostly caused by a surge in special education services for autistic children, and by a corresponding shift in what doctors call autism.
Autism has always been diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. For decades, the diagnosis was given only to kids with severe language and social impairments and unusual, repetitious behaviors.
Many children with severe autism hit themselves or others, don't speak and don't make eye contact.
Blake Dees, a 19-year-old from Suwanee, Ga., falls into that group. For the past eight years, he has been in a day program with intense services, but he still doesn't talk, he's not toilet-trained, and he has a history of trying to eat anything — even broken glass.
But he's not a typical case.
In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as "autism spectrum disorders."
The spectrum includes Asperger's syndrome and something called PDD-NOS (for Pervasive Developmental Disorder-Not Otherwise Specified). Some support groups report more than half of their families fall into these categories, but there is no commonly accepted scientific breakdown.
Gradually, there have been changes in parents' own perception of autism, the autism services schools provide, and the care that insurers pay for, experts say.
Eddie, of Buford, Ga., was initially diagnosed with obsessive-compulsive disorder, attention deficit hyperactivity disorder and other conditions. But the services he got in school were not very helpful.
His mother, Michelle, said a diagnosis of autism brought occupational therapy and other, better services.
"I do have to admit I almost like the idea of having the autistic label, at least over the other labels, because there's more help out there for you," said Scheuplein.
"The truth is there's a powerful incentive for physicians and schools to classify children in a way that gets services," said Dr. Edwin Trevathan of the U.S. Centers for Disease Control and Prevention.
Many with Asperger's and PDD-NOS succeed in school and do not — at first glance — have much in common with children like Blake Dees.
At a recent gathering of families with Asperger's children in the Atlanta area, parents told almost comical stories about kids who frequently pick their noses, douse food in ketchup or wear the same shirt day after day.
Such a frank, humorous exchange was once a rarity. Doctors for many years believed in the "refrigerator mom" theory, which held that autism was the result of being raised by a cold, unloving mother. The theory became discredited, but was difficult to dislodge from the popular conscience.
Even in the early 1980s, some parents were more comfortable with a diagnosis of mental retardation than autism, said Trevathan, director of the CDC's National Center on Birth Defects and Developmental Disabilities.
Today, parents are more likely to cringe at a diagnosis of mental retardation, which is sometimes equated to a feeble-mindedness and may obscure a child's potential.
And increasingly, professionals frown at the term: The special education journal Mental Retardation this year changed its name to Intellectual & Developmental Disabilities.
The editor said that "mentally retarded" is becoming passe and demeaning, much like the terms idiot, imbecile and moron — once used by doctors to describe varying degrees of mental retardation.
In contrast, autism has become culturally acceptable — and a ticket to a larger range of school services and accommodations.
In 1990, Congress added the word "autism" as a separate disability category to a federal law that guarantees special education services, and Education Department regulations have included a separate definition of autism since 1992.
Before that, children with autism were counted under other disabling conditions, such as mental retardation, said Jim Bradshaw, an education department spokesman.
The Social Security Administration also broadened its definition of disability to include spectrum disorders, like Asperger's.
Something else changed: The development of new stimulants and other medicines may have encouraged doctors to make diagnoses with the idea of treating them with these drugs.
Perception of the size of the problem changed, too.
Fourteen years ago, only 1 in 10,000 children were diagnosed with it. Prevalence estimates gradually rose to the current government estimate of one in 150.
That increase has been mirrored in school districts. Gwinnett County Public Schools — Georgia's largest school system — had eight classrooms for teaching autistic youngsters 13 years ago; today there are 180.
Some researchers suggest that as autism spectrum diagnoses have gone up, diagnoses of mild mental retardation have fallen.
U.S. Department of Education data show that the number of students with autism rose steadily, from about 42,500 in 1997 to nearly 225,000 in 2006. Meanwhile, the number of students counted as mentally retarded declined from about 603,000 to about 523,000.
CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.
Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)
Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.
"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.
Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90 percent of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50 percent of that money on potential environmental triggers, Goldstein said.
Whether it's because of genes or the environment (or both), autism has hit the Massey family hard. Chuck and Julia Massey, of Dacula, Ga., have three sons with Asperger's.
The youngest, Ryan, was first diagnosed after he was slow to develop speaking ability. His brothers — Trevor, 14, and Morgan, 16 — had learning and behavior problems and were later diagnosed with Asperger's, too.
All got special education services and were treated with medications. Morgan has improved, or matured, or both, and is now a social kid in mainstream classes at a Gwinnett County high school. Trevor seems to be making the same transition, his mother said.
Ryan is the most extreme. He still has uncontrollable tantrums and must attend an Asperger's-only sixth-grade classroom that teaches social skills along with traditional subjects.
In a recent interview at the family's home, Ryan acknowledged he still has anger control issues. One of the three other students in his class is particularly irritating. Ryan said the way he reacts is by "grabbing his throat."
But on this night, Ryan was calm. He described himself as happy, and paced the room telling jokes, like a nervous stand-up comedian. ("Why didn't the skeleton go to the party? He didn't have the guts," he said, eyes fixed on his audience.)
Having three Asperger's boys under one roof has at times been very intense, Massey said, noting a replaced dining room window.
Ryan acknowledged it's been educational living in a house full of Asperger's kids. Asked to name something he's learned from his brothers, he replied, "Swears."
Pa. Doctor to Stand Trial in Boy's Death
SLIPPERY ROCK, Pa. — A doctor was ordered to stand trial on charges he caused the death of a 5-year-old autistic boy by incorrectly administering a controversial chemical treatment.
Dr. Roy Kerry, 69, used the wrong drug and administered it incorrectly while trying to use chelation therapy on Abubakar Tariq Nadama, another physician testified at Kerry's preliminary hearing Thursday.
The boy went into cardiac arrest in Kerry's office on Aug. 23, 2005, immediately after receiving the therapy, which is meant to remove heavy metals from the body.
Chelation is not approved by the federal government for treating autism, though the Food and Drug Administration has approved it for treating lead poisoning.
Some people link autism to a mercury-containing preservative that was once common in childhood vaccines. Those who believe this is a possible cause of autism advocate chelation as a remedy.
A district judge on Thursday determined prosecutors had enough evidence to proceed with the case and ordered Kerry to stand trial for involuntary manslaughter.
Kerry's Lawyer, Al Lindsay, argued there was not enough evidence that the doctor had committed a crime.
Dr. Mary Carrasco, a pediatrician who testified for the prosecution, said Kerry used the wrong drug and administered it incorrectly. She called his actions "extremely reckless."
The Centers for Disease Control and Prevention reviewed Abubakar's autopsy in January 2006. The agency said the boy died because the doctor administered a drug that removes calcium from the blood, disodium EDTA, rather than calcium EDTA, which is FDA-approved to treat heavy metal poisoning.
Carrasco also said Kerry administered the drug in one intravenous "push," but should have given the drug over several hours.
Theresa Vicker, a certified medical assistant who worked for Kerry and administered the drug to Abubakar, said he was the first child she had treated with chelation. She also said she had never been instructed to do so in one "push" before, but rather over a period of more than three hours.
"When I was finished with the administration of the mixture, I was switching syringes to push in the saline and Tariq quit breathing," Vicker said.
After removing the IV line, Vicker and the assisting physician checked the boy's vitals, called the paramedics and began administering CPR. When paramedics arrived, Vicker left the exam room and "we cried," she said.
The boy's parents, Mawra and Rufai Nadama, had moved from Plymouth, England, to the Pittsburgh area so he could receive the autism treatment. They have filed a wrongful death suit against Kerry. The parents, who have returned to the United Kingdom, did not attend Thursday's hearing.
Kerry has argued that the boy's autism symptoms improved after the first two treatments. He acknowledged there may have been "miscommunication" about which medicine to administer during the third treatment, but said it did not amount to gross negligence.
Kerry also will stand trial on charges of endangering the welfare of a child and reckless endangerment. The doctor has no prior conviction, so is unlikely to face the maximum sentence of decades in prison.
John Gismondi, the family's attorney, welcomed the district judge's decision.
"It was obviously reckless conduct. He did something no doctor in the world would do," Gismondi said.
Dr. Roy Kerry, 69, used the wrong drug and administered it incorrectly while trying to use chelation therapy on Abubakar Tariq Nadama, another physician testified at Kerry's preliminary hearing Thursday.
The boy went into cardiac arrest in Kerry's office on Aug. 23, 2005, immediately after receiving the therapy, which is meant to remove heavy metals from the body.
Chelation is not approved by the federal government for treating autism, though the Food and Drug Administration has approved it for treating lead poisoning.
Some people link autism to a mercury-containing preservative that was once common in childhood vaccines. Those who believe this is a possible cause of autism advocate chelation as a remedy.
A district judge on Thursday determined prosecutors had enough evidence to proceed with the case and ordered Kerry to stand trial for involuntary manslaughter.
Kerry's Lawyer, Al Lindsay, argued there was not enough evidence that the doctor had committed a crime.
Dr. Mary Carrasco, a pediatrician who testified for the prosecution, said Kerry used the wrong drug and administered it incorrectly. She called his actions "extremely reckless."
The Centers for Disease Control and Prevention reviewed Abubakar's autopsy in January 2006. The agency said the boy died because the doctor administered a drug that removes calcium from the blood, disodium EDTA, rather than calcium EDTA, which is FDA-approved to treat heavy metal poisoning.
Carrasco also said Kerry administered the drug in one intravenous "push," but should have given the drug over several hours.
Theresa Vicker, a certified medical assistant who worked for Kerry and administered the drug to Abubakar, said he was the first child she had treated with chelation. She also said she had never been instructed to do so in one "push" before, but rather over a period of more than three hours.
"When I was finished with the administration of the mixture, I was switching syringes to push in the saline and Tariq quit breathing," Vicker said.
After removing the IV line, Vicker and the assisting physician checked the boy's vitals, called the paramedics and began administering CPR. When paramedics arrived, Vicker left the exam room and "we cried," she said.
The boy's parents, Mawra and Rufai Nadama, had moved from Plymouth, England, to the Pittsburgh area so he could receive the autism treatment. They have filed a wrongful death suit against Kerry. The parents, who have returned to the United Kingdom, did not attend Thursday's hearing.
Kerry has argued that the boy's autism symptoms improved after the first two treatments. He acknowledged there may have been "miscommunication" about which medicine to administer during the third treatment, but said it did not amount to gross negligence.
Kerry also will stand trial on charges of endangering the welfare of a child and reckless endangerment. The doctor has no prior conviction, so is unlikely to face the maximum sentence of decades in prison.
John Gismondi, the family's attorney, welcomed the district judge's decision.
"It was obviously reckless conduct. He did something no doctor in the world would do," Gismondi said.
California Autism Cases Continue to Grow
OS ANGELES — Autism cases in California continued to climb even after a mercury-based vaccine preservative that some people blame for the neurological disorder was removed from routine childhood shots, a new study found.
Researchers from the state Department of Public Health found the autism rate in children rose continuously during the 12-year study period from 1995 to 2007. The preservative thimerosal hasn't been used in childhood vaccines since 2001, but is used in some flu shots.
Doctors say the latest study adds to existing evidence refuting a link between thimerosal exposure and autism risk and should reassure parents that the disorder is not caused by vaccinations. If there was a risk, they said, autism rates should have dropped between 2004 and 2007.
The findings show "no evidence of mercury poisoning in autism" since there was no decline in autism rates even after the elimination of thimerosal, said Dr. Eric Fombonne, an autism researcher at Montreal Children's Hospital who had no role in the research.
Some advocacy groups blame thimerosal for the impaired social interaction typical of autism. Nearly 5,000 claims alleging a vaccine-autism link have been lodged with the federal government, which is deciding whether victims should receive compensation from a government fund.
Dr. Daniel Geschwind, a neurologist at the David Geffen School of Medicine at the University of California, Los Angeles, said the focus now should be on exploring the causes of autism such as possible genetic links.
"Something else must be at play and we need to know what that is if we're really serious about preventing autism," said Geschwind, who had no connection with the study.
For their study, California public health officials calculated the autism rate by analyzing a database of state-funded centers that care for people with autism and other developmental disorders.
They found the prevalence of autism in children aged 3 to 12 increased throughout the study period. For example, 0.3 per 1,000 children born in 1993 had autism at age 3 compared with 1.3 per 1,000 children born in 2003. Similar trends were found in other age groups.
"These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California," the researchers wrote.
Results were published in January's issue of the journal Archives of General Psychiatry. The study did not explore why there was an increase in autism cases.
Federal statistics show about one in 150 children in the United States have autism, higher than previous estimates. Researchers say it's unclear if the increase is due to changes in how the disorder is classified or whether it's an actual spike.
Autism is characterized by impaired social interaction and communication skills. There is no cure, but early therapy can lessen the severity.
Geraldine Dawson, the chief science officer for the advocacy group Autism Speaks, called the California research "a very important study," and said all possible causes _ genetic and environmental _ need to be explored aggressively.
"The bulk of the evidence thus far suggests that mercury is not involved, but I think parents still have many questions," said Dawson. "I think until parents are satisfied, we need to continue to examine the question."
Researchers from the state Department of Public Health found the autism rate in children rose continuously during the 12-year study period from 1995 to 2007. The preservative thimerosal hasn't been used in childhood vaccines since 2001, but is used in some flu shots.
Doctors say the latest study adds to existing evidence refuting a link between thimerosal exposure and autism risk and should reassure parents that the disorder is not caused by vaccinations. If there was a risk, they said, autism rates should have dropped between 2004 and 2007.
The findings show "no evidence of mercury poisoning in autism" since there was no decline in autism rates even after the elimination of thimerosal, said Dr. Eric Fombonne, an autism researcher at Montreal Children's Hospital who had no role in the research.
Some advocacy groups blame thimerosal for the impaired social interaction typical of autism. Nearly 5,000 claims alleging a vaccine-autism link have been lodged with the federal government, which is deciding whether victims should receive compensation from a government fund.
Dr. Daniel Geschwind, a neurologist at the David Geffen School of Medicine at the University of California, Los Angeles, said the focus now should be on exploring the causes of autism such as possible genetic links.
"Something else must be at play and we need to know what that is if we're really serious about preventing autism," said Geschwind, who had no connection with the study.
For their study, California public health officials calculated the autism rate by analyzing a database of state-funded centers that care for people with autism and other developmental disorders.
They found the prevalence of autism in children aged 3 to 12 increased throughout the study period. For example, 0.3 per 1,000 children born in 1993 had autism at age 3 compared with 1.3 per 1,000 children born in 2003. Similar trends were found in other age groups.
"These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California," the researchers wrote.
Results were published in January's issue of the journal Archives of General Psychiatry. The study did not explore why there was an increase in autism cases.
Federal statistics show about one in 150 children in the United States have autism, higher than previous estimates. Researchers say it's unclear if the increase is due to changes in how the disorder is classified or whether it's an actual spike.
Autism is characterized by impaired social interaction and communication skills. There is no cure, but early therapy can lessen the severity.
Geraldine Dawson, the chief science officer for the advocacy group Autism Speaks, called the California research "a very important study," and said all possible causes _ genetic and environmental _ need to be explored aggressively.
"The bulk of the evidence thus far suggests that mercury is not involved, but I think parents still have many questions," said Dawson. "I think until parents are satisfied, we need to continue to examine the question."
Pediatricians Group Wants Show Canceled
By LINDSEY TANNER, AP Medical Writer
CHICAGO — The nation's largest pediatricians' group on Monday said ABC should cancel the first episode of a new series because it perpetuates the myth that vaccines can cause autism.
ABC's new drama, "Eli Stone," debuts on Thursday. It features British actor Jonny Lee Miller as a prophet-like lawyer who in the opening episode argues in court that a flu vaccine made a child autistic. When it is revealed in court that an executive at the fictional vaccine maker didn't allow his own child to get the shot, jurors side with the family, giving them a huge award.
The show's co-creators say they're not anti-vaccine and would be upset if parents chose not to immunize their children after seeing the show.
But, said Dr. Renee R. Jenkins, president of the influential American Academy of Pediatrics, "A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co."
"If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation's children," Jenkins said in a statement.
Autism is a complex disorder featuring repetitive behaviors and poor social interaction and communication skills. Scientists generally believe that genetics plays a role in causing the disorder; a theory that a mercury-based preservative once widely used in childhood vaccines is to blame has been repeatedly discounted in scientific studies.
The academy released the text of a letter Jenkins wrote on Friday, addressed to Anne Sweeney, president of Disney-ABC Television Group. In the letter, Jenkins writes that many viewers "trust the health information presented on fictional television shows, which influences their decisions about health care. "
Jenkins noted that erroneous reports in the United Kingdom linking the measles vaccine to autism prompted a decline in vaccination and the worst outbreak of measles in two decades.
Greg Berlanti, a co-creator of the show, said the episode is fictional but designed "to participate in what is a national conversation" about a controversial subject. He said the boy who plays the autistic child has autism, but that the show's producers have no connection with advocates involved in the autism debate.
"We would be deeply upset" if parents opted against vaccination because of the episode, Berlanti said.
Marc Guggenheim, who helped create the show, said the first episode shows how a fictional company covered up a study that raised questions about its product, and that the message is really about "the downside of the corporatization of America."
CHICAGO — The nation's largest pediatricians' group on Monday said ABC should cancel the first episode of a new series because it perpetuates the myth that vaccines can cause autism.
ABC's new drama, "Eli Stone," debuts on Thursday. It features British actor Jonny Lee Miller as a prophet-like lawyer who in the opening episode argues in court that a flu vaccine made a child autistic. When it is revealed in court that an executive at the fictional vaccine maker didn't allow his own child to get the shot, jurors side with the family, giving them a huge award.
The show's co-creators say they're not anti-vaccine and would be upset if parents chose not to immunize their children after seeing the show.
But, said Dr. Renee R. Jenkins, president of the influential American Academy of Pediatrics, "A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co."
"If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation's children," Jenkins said in a statement.
Autism is a complex disorder featuring repetitive behaviors and poor social interaction and communication skills. Scientists generally believe that genetics plays a role in causing the disorder; a theory that a mercury-based preservative once widely used in childhood vaccines is to blame has been repeatedly discounted in scientific studies.
The academy released the text of a letter Jenkins wrote on Friday, addressed to Anne Sweeney, president of Disney-ABC Television Group. In the letter, Jenkins writes that many viewers "trust the health information presented on fictional television shows, which influences their decisions about health care. "
Jenkins noted that erroneous reports in the United Kingdom linking the measles vaccine to autism prompted a decline in vaccination and the worst outbreak of measles in two decades.
Greg Berlanti, a co-creator of the show, said the episode is fictional but designed "to participate in what is a national conversation" about a controversial subject. He said the boy who plays the autistic child has autism, but that the show's producers have no connection with advocates involved in the autism debate.
"We would be deeply upset" if parents opted against vaccination because of the episode, Berlanti said.
Marc Guggenheim, who helped create the show, said the first episode shows how a fictional company covered up a study that raised questions about its product, and that the message is really about "the downside of the corporatization of America."
Government Concedes Vaccine Injury Case
Wednesday, March 05, 2008
By MARILYNN MARCHIONE, AP Medical Writer
Government health officials have conceded that childhood vaccines worsened a rare, underlying disorder that ultimately led to autism-like symptoms in a Georgia girl, and that she should be paid from a federal vaccine-injury fund.
Medical and legal experts say the narrow wording and circumstances probably make the case an exception _ not a precedent for thousands of other pending claims.
The government "has not conceded that vaccines cause autism," said Linda Renzi, the lawyer representing federal officials, who have consistently maintained that childhood shots are safe.
However, parents and advocates for autistic children see the case as a victory that may help certain others. Although the science on this is very limited, the girl's disorder may be more common in autistic children than in healthy ones.
"It's a beginning," said Kevin Conway, a Boston lawyer representing more than 1,200 families with vaccine injury claims. "Each case is going to have to be proved on its individual merits. But it shows to me that the government has conceded that it's biologically plausible for a vaccine to cause these injuries. They've never done it before."
A lawyer for the 9-year-old girl has scheduled a news conference in Atlanta on Thursday. Her parents have declined to comment in the meantime because the case is not final and the payment amount has not been set.
Nearly 5,000 families are seeking compensation for autism or other developmental disabilities they blame on vaccines and a mercury-based preservative, thimerosal. It once was commonly used to prevent bacterial contamination but since 2001 has been used only in certain flu shots. Some cases contend that the cumulative effect of many shots given at once may have caused injuries.
The cases are before a special "vaccine court" that doles out cash from a fund Congress set up to pay people injured by vaccines and to protect makers from damages as a way to help ensure an adequate vaccine supply. The burden of proof is lighter than in a traditional court, and is based on a preponderance of evidence. Since the fund started in 1988, it has paid roughly 950 claims _ none for autism.
Studies repeatedly have discounted any link between thimerosal and autism, but legal challenges continue. The issue even cropped up in the presidential campaign, with Republican John McCain asserting on Friday that "there's strong evidence" autism is connected to the preservative.
The girl has a disorder involving her mitochondria, the energy factories of cells. The disorder _ which can be present at birth from an inherited gene or acquired later in life _ impairs cells' ability to use nutrients, and often causes problems in brain functioning. It can lead to delays in walking and talking.
Federal officials say the law bars them from discussing the case or releasing documents without the family's permission. However, The Associated Press obtained a copy of the concession by U.S. Department of Health and Human Services officials.
According to the document, five vaccines the girl received on one day in 2000 aggravated her mitochondrial condition, predisposing her to metabolic problems that manifested as worsening brain function "with features of autism spectrum disorder." In the 1990s, the definition of autism was expanded to take in a group of milder, related conditions, which are known as autism spectrum disorders.
The document does not address whether it was the thimerosal _ or something else entirely in the vaccines _ that was at fault.
The compensation fund lists problems with brain function as a rare side effect of certain vaccines. Such problems are enough on their own to warrant compensation, even without autism-like symptoms, and the fund has made numerous payouts in such cases.
The Health Resources and Services Administration, which is in charge of the fund, said: "HRSA has maintained and continues to maintain the position that vaccines do not cause autism."
A Portuguese study suggested that 7 percent of autistic children might also have the mitochondrial disorder, versus one in 5,000 people _ or 0.02 percent _ in the general population, said Dr. Marvin Natowicz, a Cleveland Clinic geneticist.
"Even if they're off by a factor of seven" and only 1 percent are afflicted, "it's still a striking statistic," he said.
Others said they doubt the Georgia case will have much effect.
"No link between mitochondrial disorders and autism spectrum disorder has been made in mainstream medicine," said Dr. Michael Pichichero of the University of Rochester in Rochester, N.Y., who has consulted for the government on vaccines and has received speaking fees from vaccine makers.
A decision is expected this spring on the first test case for a larger group of autism-vaccine claims, which are being heard in the U.S. Court of Federal Claims.
Reported cases of autism have been rising in the U.S., even after thimerosal was removed from most childhood vaccines. However, some experts believe the rise is due to an expansion of the definition of autism and related conditions, and a desire to diagnose children so they qualify for special services and aid.
By MARILYNN MARCHIONE, AP Medical Writer
Government health officials have conceded that childhood vaccines worsened a rare, underlying disorder that ultimately led to autism-like symptoms in a Georgia girl, and that she should be paid from a federal vaccine-injury fund.
Medical and legal experts say the narrow wording and circumstances probably make the case an exception _ not a precedent for thousands of other pending claims.
The government "has not conceded that vaccines cause autism," said Linda Renzi, the lawyer representing federal officials, who have consistently maintained that childhood shots are safe.
However, parents and advocates for autistic children see the case as a victory that may help certain others. Although the science on this is very limited, the girl's disorder may be more common in autistic children than in healthy ones.
"It's a beginning," said Kevin Conway, a Boston lawyer representing more than 1,200 families with vaccine injury claims. "Each case is going to have to be proved on its individual merits. But it shows to me that the government has conceded that it's biologically plausible for a vaccine to cause these injuries. They've never done it before."
A lawyer for the 9-year-old girl has scheduled a news conference in Atlanta on Thursday. Her parents have declined to comment in the meantime because the case is not final and the payment amount has not been set.
Nearly 5,000 families are seeking compensation for autism or other developmental disabilities they blame on vaccines and a mercury-based preservative, thimerosal. It once was commonly used to prevent bacterial contamination but since 2001 has been used only in certain flu shots. Some cases contend that the cumulative effect of many shots given at once may have caused injuries.
The cases are before a special "vaccine court" that doles out cash from a fund Congress set up to pay people injured by vaccines and to protect makers from damages as a way to help ensure an adequate vaccine supply. The burden of proof is lighter than in a traditional court, and is based on a preponderance of evidence. Since the fund started in 1988, it has paid roughly 950 claims _ none for autism.
Studies repeatedly have discounted any link between thimerosal and autism, but legal challenges continue. The issue even cropped up in the presidential campaign, with Republican John McCain asserting on Friday that "there's strong evidence" autism is connected to the preservative.
The girl has a disorder involving her mitochondria, the energy factories of cells. The disorder _ which can be present at birth from an inherited gene or acquired later in life _ impairs cells' ability to use nutrients, and often causes problems in brain functioning. It can lead to delays in walking and talking.
Federal officials say the law bars them from discussing the case or releasing documents without the family's permission. However, The Associated Press obtained a copy of the concession by U.S. Department of Health and Human Services officials.
According to the document, five vaccines the girl received on one day in 2000 aggravated her mitochondrial condition, predisposing her to metabolic problems that manifested as worsening brain function "with features of autism spectrum disorder." In the 1990s, the definition of autism was expanded to take in a group of milder, related conditions, which are known as autism spectrum disorders.
The document does not address whether it was the thimerosal _ or something else entirely in the vaccines _ that was at fault.
The compensation fund lists problems with brain function as a rare side effect of certain vaccines. Such problems are enough on their own to warrant compensation, even without autism-like symptoms, and the fund has made numerous payouts in such cases.
The Health Resources and Services Administration, which is in charge of the fund, said: "HRSA has maintained and continues to maintain the position that vaccines do not cause autism."
A Portuguese study suggested that 7 percent of autistic children might also have the mitochondrial disorder, versus one in 5,000 people _ or 0.02 percent _ in the general population, said Dr. Marvin Natowicz, a Cleveland Clinic geneticist.
"Even if they're off by a factor of seven" and only 1 percent are afflicted, "it's still a striking statistic," he said.
Others said they doubt the Georgia case will have much effect.
"No link between mitochondrial disorders and autism spectrum disorder has been made in mainstream medicine," said Dr. Michael Pichichero of the University of Rochester in Rochester, N.Y., who has consulted for the government on vaccines and has received speaking fees from vaccine makers.
A decision is expected this spring on the first test case for a larger group of autism-vaccine claims, which are being heard in the U.S. Court of Federal Claims.
Reported cases of autism have been rising in the U.S., even after thimerosal was removed from most childhood vaccines. However, some experts believe the rise is due to an expansion of the definition of autism and related conditions, and a desire to diagnose children so they qualify for special services and aid.
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