03-28-2005, 03:51 PM
http://www.heraldsun.com/state/6-590682.html
Quote:
Families living with autism seek diagnosis on puzzling condition
By SAM SCOTT
Mar 26, 2005 : 12:53 pm ET
WILMINGTON, N.C. -- The purple bruise clearly came from a nasty knock. But Athena O'Connor can only guess how her 5-year-old son hit his back.
Asking is not an option. Daniel is the most reticent of three brothers with autism, staying in his own world even at times when his body would seem to demand he reach out. Last year, his eardrum burst after an infection his parents knew nothing about.
"I don't think you can ever understand this if you haven't been through it," O'Connor said.
Raising three kids with autism may make the O'Connors an extraordinary case, but more people in the region are in similar circumstances. From 1994 to 2004, the number of autistic children in New Hanover County Schools jumped 12-fold from 18 to 209, outpacing even the much-publicized growth at the national level, put at 500 percent for the past decade by the U.S. Government Accountability Office.
It's questionable whether the numbers represent more instances or just better awareness. Improved diagnoses now recognize that some children once dubbed mentally retarded or written off as simply weird may belong on the spectrum of autistic disorders.
And, plainly, families with autistic children who have moved here have had some effect on local numbers. An urban hub has more amenities. New Hanover County Schools, whose special education budget has risen 35 percent in the last five years, has a strong reputation for its autistic services.
The O'Connors, for example, moved from Raleigh to enroll Daniel and his twin, Samuel, at Eaton Elementary School, where they get highly repetitive one-on-one instruction that was unavailable in Wake County schools. To provide such care privately would cost tens of thousands of dollars, O'Connor said.
Whatever has fueled the rise, each new diagnosis represents a moment of devastation for a family. Ross Williams, a pediatrician at the local branch of the state Children's Developmental Services Agency in Wilmington, called diagnosing autism one of the most difficult things he has to do -- telling parents who only recently celebrated a seemingly healthy birth that their beautiful child has a lifetime disorder.
As a parent, Williams said he would rather a child receive a diagnosis of curable leukemia.
Autism covers a variety of related brain disorders that strike communication and social skills and often result in regimented, repetitive behavior. The cause is unknown. Sufferers, who are overwhelmingly male, may not be able to speak. Many are clumsy. Others have superior mental skills but are oblivious to social cues, making them ripe for bullying or exclusion.
Intensive education can develop skills, but the disorder has no cure. "It's a very lonely spot to find yourself," said Kathy Wines, whose 12-year-old son, Derek, was diagnosed at age 2 after never trying to speak.
Well-behaved, warm and happy, Derek began speaking at 8 years old. He shakes his hands when he's excited and has a passion for dinosaurs; both the repetitive movements and the intense focus are typical autistic behaviors.
At 185 pounds and with a size-13 foot, he is physically well beyond most boys his age. Mentally, however, he may always lag far behind. What happens as he becomes an adult is a deep concern to his parents and siblings.
"The hardest thing is to sit around and worry what is going to happen after we're gone," Wines said. "With Derek, we have to plan to be 80."
The future is one of the great frustrations for many parents, said Sarah Bentzler, a psychologist with the Children's Developmental Services Agency in Wilmington. They want to know whether their child will get married, go to college or live independently, she said. "We don't have a lot of really good answers," she said.
Predictions are difficult to make. Caleb, O'Connor's oldest son, was diagnosed at 5 years old, three weeks after the twins were born. He could count to 200 and navigate a computer, but he never said "no" or "yes" and never used pronouns, O'Connor said. He answered questions by repeating the question. She believed the language delays were a result of living in Uzbekistan, where she and her husband, Scott, were missionaries.
The verdict was crushing. She and her husband initially thought Caleb might require institutionalization, she said.
"The idea of a normal life didn't enter our minds," she said. But Caleb is now a fifth-grader who takes mainstream classes at Freeman Elementary School. With some special allowances, he gets good grades and has made the honor roll. His IQ was measured at 76 in kindergarten, 103 in third grade and now may be higher, though he remains socially awkward, she said.
"If he was born 20, 30 years ago, he'd be thought of just an extremely goofy kid who says all the wrong things at the wrong time," she said.
But whether Samuel and Daniel, who are more profound in their symptoms, enjoy the same growth remains to be seen. O'Connor said she has seen big improvements since they have been at Eaton, getting eight to 10 hours a week of private drills with small rewards drawing them on. They also get speech and occupational therapy at school and at home, O'Connor said.
The sheer time involved in treating autistic children can be overwhelming, especially when it's often unclear what direction to put that energy. There is no consensus on how to treat autism, and some parents put faith in experimental treatments, such as chelation therapy to remove heavy metals, a practice rooted in the controversial belief that children's vaccines cause autism. Others try special diets, such as cutting out grains and milk.
Even in the mainstream, there are a variety of choices. In New Hanover County schools, educators use an eclectic approach, said Bill Trant, director of special education.
What works for some does not for others. Nadine Antonelli gave up a career as an obstetrician-gynecologist to take care of her son, Noah, who recoiled from the type of intensive instruction in the schools that O'Connor praises, she said.
Incurring thousands of dollars of expenses to find an alternative to what the school system provides, she has adopted "Floortime," a method that uses play to engage Noah through his own interests.
Her husband, David, also is a medical doctor, but without assistance from agencies such as United Cerebral Palsy, they'd be hard pressed to provide all the hours and types of therapy her son receives.
It's a hard row to hoe. But Antonelli said she reminds herself each day that Noah is her gift. He has a sweetness that seems devoid of any evil, unable to lie. He slowed down the lives of two busy doctors, often too occupied to be together much as a family, she said. She finds a spiritual answer in the challenge: "My life is much better now."
By SAM SCOTT
Mar 26, 2005 : 12:53 pm ET
WILMINGTON, N.C. -- The purple bruise clearly came from a nasty knock. But Athena O'Connor can only guess how her 5-year-old son hit his back.
Asking is not an option. Daniel is the most reticent of three brothers with autism, staying in his own world even at times when his body would seem to demand he reach out. Last year, his eardrum burst after an infection his parents knew nothing about.
"I don't think you can ever understand this if you haven't been through it," O'Connor said.
Raising three kids with autism may make the O'Connors an extraordinary case, but more people in the region are in similar circumstances. From 1994 to 2004, the number of autistic children in New Hanover County Schools jumped 12-fold from 18 to 209, outpacing even the much-publicized growth at the national level, put at 500 percent for the past decade by the U.S. Government Accountability Office.
It's questionable whether the numbers represent more instances or just better awareness. Improved diagnoses now recognize that some children once dubbed mentally retarded or written off as simply weird may belong on the spectrum of autistic disorders.
And, plainly, families with autistic children who have moved here have had some effect on local numbers. An urban hub has more amenities. New Hanover County Schools, whose special education budget has risen 35 percent in the last five years, has a strong reputation for its autistic services.
The O'Connors, for example, moved from Raleigh to enroll Daniel and his twin, Samuel, at Eaton Elementary School, where they get highly repetitive one-on-one instruction that was unavailable in Wake County schools. To provide such care privately would cost tens of thousands of dollars, O'Connor said.
Whatever has fueled the rise, each new diagnosis represents a moment of devastation for a family. Ross Williams, a pediatrician at the local branch of the state Children's Developmental Services Agency in Wilmington, called diagnosing autism one of the most difficult things he has to do -- telling parents who only recently celebrated a seemingly healthy birth that their beautiful child has a lifetime disorder.
As a parent, Williams said he would rather a child receive a diagnosis of curable leukemia.
Autism covers a variety of related brain disorders that strike communication and social skills and often result in regimented, repetitive behavior. The cause is unknown. Sufferers, who are overwhelmingly male, may not be able to speak. Many are clumsy. Others have superior mental skills but are oblivious to social cues, making them ripe for bullying or exclusion.
Intensive education can develop skills, but the disorder has no cure. "It's a very lonely spot to find yourself," said Kathy Wines, whose 12-year-old son, Derek, was diagnosed at age 2 after never trying to speak.
Well-behaved, warm and happy, Derek began speaking at 8 years old. He shakes his hands when he's excited and has a passion for dinosaurs; both the repetitive movements and the intense focus are typical autistic behaviors.
At 185 pounds and with a size-13 foot, he is physically well beyond most boys his age. Mentally, however, he may always lag far behind. What happens as he becomes an adult is a deep concern to his parents and siblings.
"The hardest thing is to sit around and worry what is going to happen after we're gone," Wines said. "With Derek, we have to plan to be 80."
The future is one of the great frustrations for many parents, said Sarah Bentzler, a psychologist with the Children's Developmental Services Agency in Wilmington. They want to know whether their child will get married, go to college or live independently, she said. "We don't have a lot of really good answers," she said.
Predictions are difficult to make. Caleb, O'Connor's oldest son, was diagnosed at 5 years old, three weeks after the twins were born. He could count to 200 and navigate a computer, but he never said "no" or "yes" and never used pronouns, O'Connor said. He answered questions by repeating the question. She believed the language delays were a result of living in Uzbekistan, where she and her husband, Scott, were missionaries.
The verdict was crushing. She and her husband initially thought Caleb might require institutionalization, she said.
"The idea of a normal life didn't enter our minds," she said. But Caleb is now a fifth-grader who takes mainstream classes at Freeman Elementary School. With some special allowances, he gets good grades and has made the honor roll. His IQ was measured at 76 in kindergarten, 103 in third grade and now may be higher, though he remains socially awkward, she said.
"If he was born 20, 30 years ago, he'd be thought of just an extremely goofy kid who says all the wrong things at the wrong time," she said.
But whether Samuel and Daniel, who are more profound in their symptoms, enjoy the same growth remains to be seen. O'Connor said she has seen big improvements since they have been at Eaton, getting eight to 10 hours a week of private drills with small rewards drawing them on. They also get speech and occupational therapy at school and at home, O'Connor said.
The sheer time involved in treating autistic children can be overwhelming, especially when it's often unclear what direction to put that energy. There is no consensus on how to treat autism, and some parents put faith in experimental treatments, such as chelation therapy to remove heavy metals, a practice rooted in the controversial belief that children's vaccines cause autism. Others try special diets, such as cutting out grains and milk.
Even in the mainstream, there are a variety of choices. In New Hanover County schools, educators use an eclectic approach, said Bill Trant, director of special education.
What works for some does not for others. Nadine Antonelli gave up a career as an obstetrician-gynecologist to take care of her son, Noah, who recoiled from the type of intensive instruction in the schools that O'Connor praises, she said.
Incurring thousands of dollars of expenses to find an alternative to what the school system provides, she has adopted "Floortime," a method that uses play to engage Noah through his own interests.
Her husband, David, also is a medical doctor, but without assistance from agencies such as United Cerebral Palsy, they'd be hard pressed to provide all the hours and types of therapy her son receives.
It's a hard row to hoe. But Antonelli said she reminds herself each day that Noah is her gift. He has a sweetness that seems devoid of any evil, unable to lie. He slowed down the lives of two busy doctors, often too occupied to be together much as a family, she said. She finds a spiritual answer in the challenge: "My life is much better now."