Special Needs Resource Fair - Thursday, March 27, 6:30 - 9PM at the Sid Jacobson JCC, 300 Forest Drive, East Hills, NY 11548 featuring over fifty vendors from camps, schools and agencies that offer services for children, teens and adults with special needs.
World Autism Awareness DayWednesday, April 2, 2008. Please visit www.autismspeaks.org and www.worldautismawarenessday.org for more information.
The Fifth Annual Woodbury Ball - A Disco Night for AutismSaturday, April 12, 20087:00 p.m.The Mirage Nightclub, Westbury, NY. Event proceeds benefit Autism Speaks, North Shore Autism Circle and AHRC.
Autism Awareness Day with the Long Island Ducks Tuesday evening, August 26, 2008. Sponsored by Autism Speaks and DeMatteo Monness, LLC. Join us as the LI Ducks take on the Southern Maryland Blue Crabs. For more information on the game, please email us at longisland@autismspeaks.org
Tuesday, March 25, 2008
The United Nations WAAD Art Exhibition Comes To The Manhattan Children's Center April 9 - 10, 2008
http://www.manhattanchildrenscenter.org/mccsavantexhibition.html
The United Nations WAAD Art Exhibition Comes ToThe Manhattan Children's Center April 9 - 10, 2008124 West 95th StreetNew York, NY 10025
The Manhattan Children's Center World Autism Awareness DayExhibition will be open to the public on April 9th & 10th, 2008.World Autism Awareness DayExhibition of Artwork by Individuals on the Autism Spectrumat The Manhattan Children's Center124 West 95th StreetNew York, New YorkOriginal artwork and prints available for purchase.Don't 'dis' the ability:Artworks of the Autistic Savant* Gregory Blackstock * Christophe Pillault* Susan Brown * Richard Wawro* Dr. Temple Grandin * George Widener* Amanda LaMunyon * Donna Williams* Jonathan Lerman * Stephen Wiltshire* Jessica Park * Ping Lian YeakEXHIBITION HOURS Open to the General PublicAPRIL 9, 2008 12 PM to 2 PM & 3 PM to 7 PMAPRIL 10, 2008 10 AM to 2 PM & 3 PM to 8 PMFOR FURTHER INFORMATION CONTACTJANELLE LEWIS 212.749.4604jlewis@manhattanchildrenscenter.org
The United Nations WAAD Art Exhibition Comes ToThe Manhattan Children's Center April 9 - 10, 2008124 West 95th StreetNew York, NY 10025
The Manhattan Children's Center World Autism Awareness DayExhibition will be open to the public on April 9th & 10th, 2008.World Autism Awareness DayExhibition of Artwork by Individuals on the Autism Spectrumat The Manhattan Children's Center124 West 95th StreetNew York, New YorkOriginal artwork and prints available for purchase.Don't 'dis' the ability:Artworks of the Autistic Savant* Gregory Blackstock * Christophe Pillault* Susan Brown * Richard Wawro* Dr. Temple Grandin * George Widener* Amanda LaMunyon * Donna Williams* Jonathan Lerman * Stephen Wiltshire* Jessica Park * Ping Lian YeakEXHIBITION HOURS Open to the General PublicAPRIL 9, 2008 12 PM to 2 PM & 3 PM to 7 PMAPRIL 10, 2008 10 AM to 2 PM & 3 PM to 8 PMFOR FURTHER INFORMATION CONTACTJANELLE LEWIS 212.749.4604jlewis@manhattanchildrenscenter.org
Monday, March 24, 2008
Comedy Central Autism Benefit
On April 13, Comedy Central is hosting a benefit with proceeds goingto helping educate autistic children and adults. It was created bySaturday Night Live Cartoonist Robert Smigel who has an autistic son.The link is below:The Biz: Comedy With A Cause: Toyota Touts Corolla, Takes On AutismMarch 17, 2008Dozens of comedy titans will appear at Night of Too Many Stars, anupcoming autism benefit on Comedy Central: http://www.brandweek.com/bw/magazine/columns/article_display.jsp?vnu_content_id=1003725874
Mysteries and Complications Autism is everywhere—once again. Separating fact from fear as the courts and Hollywood wade in.
You wonder what he thinks. The little boy who flaps his arms and bangs his head. Who bristles at the touch of wool and covers his ears when balloons go "pop!" The boy who doesn't respond to his name and will never say "I love you." What does he think of the world outside? The busy world of childhood vaccines, celebrity fund-raising and genetic research. The cauldron of medicine, media, politics and the law. What does he think of autism?
For that matter, what are we to think? Passions about autism are running higher than ever, and for good reason. Autism spectrum disorders affect one in 150 kids from all walks of life, according to the Centers for Disease Control and Prevention, a tenfold jump in just the past decade. As the numbers grow, public awareness increases and the fervor surrounding each new development intensifies.
Earlier this month, after the federal government said vaccines aggravated an underlying disorder that led to autism-like symptoms in 9-year-old Hannah Poling, the longstanding controversy over the role of childhood vaccines flared anew on network newscasts, the Internet and talk radio. The culture of autism is hitting prime time, too. Next week HBO will air "Autism: The Musical," a documentary about five children with autism who perform in their own show. A week later, Sundance Channel will broadcast "Autism Every Day," a film laying out the challenges faced by families. April 2 marks the first World Autism Awareness Day, a global effort voted into existence by the U.N. General Assembly. Less than two weeks after that, Jon Stewart will host an autism fund-raiser at New York's Beacon Theater, to be aired live on Comedy Central. Among the glittery lineup: Tina Fey, Stephen Colbert and Conan O'Brien.
Despite its high profile, however, autism is one of the most complicated neurological disorders known. Some of the people on "the spectrum" attend college; others never speak an intelligible word. Its complexity, in fact, is what has fueled the ongoing vaccine debate and caused divisions within the "autism community." Unlike most conditions that attract popular and celebrity support—breast cancer, AIDS—autism is almost a complete mystery, with no known cause. The vacuum created by this lack of knowledge has been filled with the theories, worries and frustrations of desperate parents. It's hard not to want something, or somebody, to blame. But now, as the spotlight glares again, it's time to separate fact from fear, to strive for perspective and clarity over emotion, to define the true scope of the disorder.
For decades, researchers have been trying to pinpoint a cause for autism. In the 1950s, clinicians blamed "refrigerator mothers" and their cold, uncaring parenting. More recently, the furor has swirled largely around childhood vaccines. In 1998, a controversial British study, later retracted by most of its authors, suggested a possible link between autism and the MMR vaccine, which contained live viruses. Not long after, a debate over the effects of thimerosal, a mercury-based preservative used in other vaccines, began to build. Starting in 2001, thimerosal was removed from almost every childhood inoculation (some flu shots still contain it), and the weight of scientific evidence has found no connection between autism and the preservative. Today, scientists believe that genes (the disorder runs in families) and environmental factors, which could be anything from pesticides to antibodies in a mother's womb, both play a role. But some parents continue to believe their children were injured by modern medicine. Sen. John McCain lent his voice to their cause recently when he said "there's strong evidence" that autism is connected to "a preservative in vaccines." That, and this month's ruling in the Poling case—which was one of thousands yet to be decided by a federal "vaccine court"—have given new fodder to the debate. In a CNN "quick vote" conducted after the news broke, 58 percent of respondents said they believe there's a connection between childhood vaccines and autism.
But the court case wasn't that simple. It turned out that Hannah had a rare mitochondrial disorder. Rather than support the thimerosal hypothesis, the decision endorses a whole other field of research into the causes of autism. It's possible, scientists say, that a challenge to the immune system—be it an infection, a vaccine or some other trigger—could stress already fragile cells and exacerbate the problem. Scientists want to know how many children with autism have mitochondrial disorders. And would it be possible to identify those who might be vulnerable to vaccines? "This case is a call to action to continue to understand this very complex disorder," says Geraldine Dawson of the advocacy group Autism Speaks.
To appreciate the complexity of the condition, all you have to do is look at the extraordinary range of people who fall under the umbrella diagnosis of autism spectrum disorders. At one end are kids like Charlie Fisher. At 10, he's unable to read and can speak only short sentences. For two years, he head-banged several times a day, says his mother, Kristina Chew, who writes a blog called autismvox.com. Chew believes that vaccines had nothing to do with her son's condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services—the kind of help her son has received. Today, Charlie is doing much better, even learning to surf, but he is still "profoundly different" from other children, says Chew. "There are some things that maybe he can change and other things I hope people can come to accept."
On the other end: Ari Ne'eman, president of the Autistic Self-Advocacy Net work and a 20-year-old university student. Ne'eman was diagnosed at 12 with Asperger's syndrome, a high-functioning subgroup of the spectrum. Exceedingly articulate, Ne'eman says he has never struggled with speech, but he has always had difficulty understanding nonverbal forms of communication, like sarcasm. He also flaps his hands occasionally and he can't stand the feel of certain fabrics, especially velvet.
With the vast range in abilities comes a striking diversity in thinking, too. Over the years, the autism community has divided into camps, often with conflicting ideas about how to view and treat the disorder. Elizabeth Horn, president of the Autism Recovery Consortium, believes vaccines may play a role. Kids "slip away after getting these shots," she says. Horn, whose daughter, Sophia, has autism, believes children on the spectrum are sick, but can recover with help. Sophia, 12, is on a special diet, avoiding artificial colors and chemicals, and she takes supplements like magnesium and vitamin D. Ne'eman, on the other hand, believes in neurodiversity, the idea that differences in human behavior should be celebrated, not fixed. People with autism should be called "autistic people," he says, not "people with autism," the language favored by mainstream advocacy groups. "Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated," says Ne'eman. And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne'eman's fear? That autism will become like Down syndrome—essentially selected out of the population.
It's a provocative idea. But the ultimate goal of the researchers, and the many families who support their work, is to solve the mystery of autism. Clarity is what we need, and science is the way we'll get there.
Editor's note: In an earlier version of this story, we said that the MMR vaccine once contained thimerosal. It did not. Other childhood vaccines, however, did contain the mercury-based preservative.
With Karen Springen
© 2008
For that matter, what are we to think? Passions about autism are running higher than ever, and for good reason. Autism spectrum disorders affect one in 150 kids from all walks of life, according to the Centers for Disease Control and Prevention, a tenfold jump in just the past decade. As the numbers grow, public awareness increases and the fervor surrounding each new development intensifies.
Earlier this month, after the federal government said vaccines aggravated an underlying disorder that led to autism-like symptoms in 9-year-old Hannah Poling, the longstanding controversy over the role of childhood vaccines flared anew on network newscasts, the Internet and talk radio. The culture of autism is hitting prime time, too. Next week HBO will air "Autism: The Musical," a documentary about five children with autism who perform in their own show. A week later, Sundance Channel will broadcast "Autism Every Day," a film laying out the challenges faced by families. April 2 marks the first World Autism Awareness Day, a global effort voted into existence by the U.N. General Assembly. Less than two weeks after that, Jon Stewart will host an autism fund-raiser at New York's Beacon Theater, to be aired live on Comedy Central. Among the glittery lineup: Tina Fey, Stephen Colbert and Conan O'Brien.
Despite its high profile, however, autism is one of the most complicated neurological disorders known. Some of the people on "the spectrum" attend college; others never speak an intelligible word. Its complexity, in fact, is what has fueled the ongoing vaccine debate and caused divisions within the "autism community." Unlike most conditions that attract popular and celebrity support—breast cancer, AIDS—autism is almost a complete mystery, with no known cause. The vacuum created by this lack of knowledge has been filled with the theories, worries and frustrations of desperate parents. It's hard not to want something, or somebody, to blame. But now, as the spotlight glares again, it's time to separate fact from fear, to strive for perspective and clarity over emotion, to define the true scope of the disorder.
For decades, researchers have been trying to pinpoint a cause for autism. In the 1950s, clinicians blamed "refrigerator mothers" and their cold, uncaring parenting. More recently, the furor has swirled largely around childhood vaccines. In 1998, a controversial British study, later retracted by most of its authors, suggested a possible link between autism and the MMR vaccine, which contained live viruses. Not long after, a debate over the effects of thimerosal, a mercury-based preservative used in other vaccines, began to build. Starting in 2001, thimerosal was removed from almost every childhood inoculation (some flu shots still contain it), and the weight of scientific evidence has found no connection between autism and the preservative. Today, scientists believe that genes (the disorder runs in families) and environmental factors, which could be anything from pesticides to antibodies in a mother's womb, both play a role. But some parents continue to believe their children were injured by modern medicine. Sen. John McCain lent his voice to their cause recently when he said "there's strong evidence" that autism is connected to "a preservative in vaccines." That, and this month's ruling in the Poling case—which was one of thousands yet to be decided by a federal "vaccine court"—have given new fodder to the debate. In a CNN "quick vote" conducted after the news broke, 58 percent of respondents said they believe there's a connection between childhood vaccines and autism.
But the court case wasn't that simple. It turned out that Hannah had a rare mitochondrial disorder. Rather than support the thimerosal hypothesis, the decision endorses a whole other field of research into the causes of autism. It's possible, scientists say, that a challenge to the immune system—be it an infection, a vaccine or some other trigger—could stress already fragile cells and exacerbate the problem. Scientists want to know how many children with autism have mitochondrial disorders. And would it be possible to identify those who might be vulnerable to vaccines? "This case is a call to action to continue to understand this very complex disorder," says Geraldine Dawson of the advocacy group Autism Speaks.
To appreciate the complexity of the condition, all you have to do is look at the extraordinary range of people who fall under the umbrella diagnosis of autism spectrum disorders. At one end are kids like Charlie Fisher. At 10, he's unable to read and can speak only short sentences. For two years, he head-banged several times a day, says his mother, Kristina Chew, who writes a blog called autismvox.com. Chew believes that vaccines had nothing to do with her son's condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services—the kind of help her son has received. Today, Charlie is doing much better, even learning to surf, but he is still "profoundly different" from other children, says Chew. "There are some things that maybe he can change and other things I hope people can come to accept."
On the other end: Ari Ne'eman, president of the Autistic Self-Advocacy Net work and a 20-year-old university student. Ne'eman was diagnosed at 12 with Asperger's syndrome, a high-functioning subgroup of the spectrum. Exceedingly articulate, Ne'eman says he has never struggled with speech, but he has always had difficulty understanding nonverbal forms of communication, like sarcasm. He also flaps his hands occasionally and he can't stand the feel of certain fabrics, especially velvet.
With the vast range in abilities comes a striking diversity in thinking, too. Over the years, the autism community has divided into camps, often with conflicting ideas about how to view and treat the disorder. Elizabeth Horn, president of the Autism Recovery Consortium, believes vaccines may play a role. Kids "slip away after getting these shots," she says. Horn, whose daughter, Sophia, has autism, believes children on the spectrum are sick, but can recover with help. Sophia, 12, is on a special diet, avoiding artificial colors and chemicals, and she takes supplements like magnesium and vitamin D. Ne'eman, on the other hand, believes in neurodiversity, the idea that differences in human behavior should be celebrated, not fixed. People with autism should be called "autistic people," he says, not "people with autism," the language favored by mainstream advocacy groups. "Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated," says Ne'eman. And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne'eman's fear? That autism will become like Down syndrome—essentially selected out of the population.
It's a provocative idea. But the ultimate goal of the researchers, and the many families who support their work, is to solve the mystery of autism. Clarity is what we need, and science is the way we'll get there.
Editor's note: In an earlier version of this story, we said that the MMR vaccine once contained thimerosal. It did not. Other childhood vaccines, however, did contain the mercury-based preservative.
With Karen Springen
© 2008
Whole Child Spring Conference - Raising Awareness for Children's Health & Healing
Whole Child Spring Conference - Raising Awareness for Children's Health & Healingin
in response to the overwhelming increase of children being diagnosed with ADHD, Learning Disabilities, Allergies, Asthma & Autism. Keynote Speaker:Dietrich Klinghardt, M.D., Ph.D. & others
Apr 12 New York 8a-5p$125 $100 adv by Mar 10NYC Seminar & Conference Center71 West 23 Street -
www.wholechild..infowholechildinfo@verizon.net
914-450-6971
in response to the overwhelming increase of children being diagnosed with ADHD, Learning Disabilities, Allergies, Asthma & Autism. Keynote Speaker:Dietrich Klinghardt, M.D., Ph.D. & others
Apr 12 New York 8a-5p$125 $100 adv by Mar 10NYC Seminar & Conference Center71 West 23 Street -
www.wholechild..infowholechildinfo@verizon.net
914-450-6971
In the Mainstream but Isolated
Montgomery's Integration of Special-Needs Students Angers Some Parents
By Daniel de ViseWashington Post Staff WriterMonday, March 17, 2008; B01
Victoria Miresso cannot button a shirt, match a sock or tell one school bus from another. Yet at Roberto Clemente Middle School in Germantown, she is expected to function much like any other sixth-grader, coping with class changes, algebra quizzes and lunchroom bullies.
Victoria's parents say she is a victim of inclusion: a trend, in Montgomery County and across the nation, toward shutting down traditional special education classes and placing special-needs students in regular classrooms at neighborhood schools.
"At this point, we're about halfway through the school year, and she hasn't learned anything," said Laura Johnson, her mother. "It's not fair for her to go to school and sit there and be teased because she doesn't understand what they're teaching her."
Montgomery school officials say Victoria is no victim. She is, however, one of the first generation of students who cannot attend secondary learning centers, a network of self-contained classrooms open to special education students at eight middle and high schools in the county since the 1970s. Montgomery school leaders decided in 2006 to phase out the centers, part of an ongoing shift of special-ed students and teachers out of separate classrooms and into the general school population.
It ranks among the most controversial decisions made by Montgomery Superintendent Jerry D. Weast, who has run the 138,000-student system since 1999. A hundred parents picketed the school board in the dead of winter to protest the closure. They argued that the small, sheltered classes were the only setting that worked for their children. Weast and the school board maintained that students in the centers weren't learning and deserved the same rigorous lessons offered to everyone else.
The conflict illustrates a broader schism within the special education community over inclusion, a national effort to break down the walls that have separated special-needs students from their peers. Some parents want their special-needs children exposed to the brisk academics and complex social tapestry of a suburban neighborhood school. Others, including the Johnsons, do not.
Victoria Miresso has an IQ of 55, according to diagnostic papers her parents keep in a thick file at the family home. She is only partially mainstreamed at Roberto Clemente, taking a mix of mainstream and special-ed classes. Nonetheless, her mother said, she is lost.
"She doesn't understand a word," Laura Johnson said. "She writes on her tests, 'I don't know,' and she has to hand it in."
Students such as Victoria were routinely housed in separate schools until 1975, when the federal Individuals With Disabilities Education Act mandated that disabled and non-disabled students be taught together "to the maximum extent appropriate." A first wave of inclusion shifted special education classrooms into neighborhood schools. A second wave, starting in the late 1990s, moved many special education students out of those classrooms and into large mainstream classes, along with an army of special education teachers and aides charged with helping them keep up.
The No Child Left Behind Act of 2001 pressed the issue further, requiring school systems to demonstrate that special-ed students attain academic proficiency at the same rate as their peers.
Only 8 percent of learning center students in Montgomery middle schools rated proficient last year on the Maryland School Assessment in reading, and only 4 percent passed the statewide math test. Students with comparable disabilities who attended mainstream classes performed much better. Under No Child Left Behind, all special-needs students tested are expected to pass by 2014.
School system leaders say the transition, grade by grade, away from learning centers has been a resounding success. All sixth-grade teachers and hundreds of aides responsible for serving the students attended mandatory training over the summer. Case managers were assigned to each of the 70 students being mainstreamed, most of whom had attended elementary school learning centers, which are not being closed. Each student has been monitored over the year, and extra staff assigned as needed to help them succeed. A parent survey, given this fall, found just two parents dissatisfied with inclusion, although only 24 families responded.
Ketia Ingram-Adams said her 12-year-old foster daughter has made a smooth transition from an elementary learning center to mainstream classes at Briggs Chaney Middle School in the Spencerville area, where she is getting A's and B's.
Ingram-Adams's daughter had no formal schooling until about age 7. School psychologists concluded she had attention-deficit hyperactivity disorder, although her foster mother thinks that the diagnosis might be wrong.
Last year, the learning center setting -- 10 students and two teachers, working at an easy pace -- helped the girl gain years of missed reading and math instruction.
"She would get tips on things that would help her learn more math, do better at her reading, practice her writing, her reading comprehension," the mother said. "And she would sometimes get frustrated. But they taught her how to get back the focus, to 'Slow down, close your eyes, count to 10.' "
This year, she has moved effortlessly into the neighborhood middle school.
"She can read chapter books, she can do addition and subtraction, multiplication and division," Ingram-Adams said. "It's just like they gave her the push she needed in school."
But other parents say inclusion has been a disaster, leaving their children bewildered and friendless. They are particularly resentful at being excluded from the decision-making process that doomed the centers. Resentment lingers, even after Weast altered the plan so that all of the roughly 600 students attending the centers could stay through graduation.
Michelle Ryan of Gaithersburg said she was open to the idea of mainstreaming daughter Allyson, 12, who has autism. She wanted Allyson to earn a diploma.
But Allyson was not ready for Forest Oak Middle School. She had a meltdown in the first week of school, "crying and screaming," her mother said. She found her locker, and her classes, only with help from an attentive aide who followed her around.
Today, Allyson is getting B's and C's. But Ryan suspects teachers might be inflating her daughter's grades to make the transition look like a success. Worse, Allyson has begun to feel inferior to her classmates, "and she never had that problem before," her mother said. Isolated from other special-needs students, she has no friends and eats lunch alone.
"Yes, academically, it might be better for her to be mainstreamed, and that was always my goal for her as a parent," Ryan said. "But she wasn't ready."
By Daniel de ViseWashington Post Staff WriterMonday, March 17, 2008; B01
Victoria Miresso cannot button a shirt, match a sock or tell one school bus from another. Yet at Roberto Clemente Middle School in Germantown, she is expected to function much like any other sixth-grader, coping with class changes, algebra quizzes and lunchroom bullies.
Victoria's parents say she is a victim of inclusion: a trend, in Montgomery County and across the nation, toward shutting down traditional special education classes and placing special-needs students in regular classrooms at neighborhood schools.
"At this point, we're about halfway through the school year, and she hasn't learned anything," said Laura Johnson, her mother. "It's not fair for her to go to school and sit there and be teased because she doesn't understand what they're teaching her."
Montgomery school officials say Victoria is no victim. She is, however, one of the first generation of students who cannot attend secondary learning centers, a network of self-contained classrooms open to special education students at eight middle and high schools in the county since the 1970s. Montgomery school leaders decided in 2006 to phase out the centers, part of an ongoing shift of special-ed students and teachers out of separate classrooms and into the general school population.
It ranks among the most controversial decisions made by Montgomery Superintendent Jerry D. Weast, who has run the 138,000-student system since 1999. A hundred parents picketed the school board in the dead of winter to protest the closure. They argued that the small, sheltered classes were the only setting that worked for their children. Weast and the school board maintained that students in the centers weren't learning and deserved the same rigorous lessons offered to everyone else.
The conflict illustrates a broader schism within the special education community over inclusion, a national effort to break down the walls that have separated special-needs students from their peers. Some parents want their special-needs children exposed to the brisk academics and complex social tapestry of a suburban neighborhood school. Others, including the Johnsons, do not.
Victoria Miresso has an IQ of 55, according to diagnostic papers her parents keep in a thick file at the family home. She is only partially mainstreamed at Roberto Clemente, taking a mix of mainstream and special-ed classes. Nonetheless, her mother said, she is lost.
"She doesn't understand a word," Laura Johnson said. "She writes on her tests, 'I don't know,' and she has to hand it in."
Students such as Victoria were routinely housed in separate schools until 1975, when the federal Individuals With Disabilities Education Act mandated that disabled and non-disabled students be taught together "to the maximum extent appropriate." A first wave of inclusion shifted special education classrooms into neighborhood schools. A second wave, starting in the late 1990s, moved many special education students out of those classrooms and into large mainstream classes, along with an army of special education teachers and aides charged with helping them keep up.
The No Child Left Behind Act of 2001 pressed the issue further, requiring school systems to demonstrate that special-ed students attain academic proficiency at the same rate as their peers.
Only 8 percent of learning center students in Montgomery middle schools rated proficient last year on the Maryland School Assessment in reading, and only 4 percent passed the statewide math test. Students with comparable disabilities who attended mainstream classes performed much better. Under No Child Left Behind, all special-needs students tested are expected to pass by 2014.
School system leaders say the transition, grade by grade, away from learning centers has been a resounding success. All sixth-grade teachers and hundreds of aides responsible for serving the students attended mandatory training over the summer. Case managers were assigned to each of the 70 students being mainstreamed, most of whom had attended elementary school learning centers, which are not being closed. Each student has been monitored over the year, and extra staff assigned as needed to help them succeed. A parent survey, given this fall, found just two parents dissatisfied with inclusion, although only 24 families responded.
Ketia Ingram-Adams said her 12-year-old foster daughter has made a smooth transition from an elementary learning center to mainstream classes at Briggs Chaney Middle School in the Spencerville area, where she is getting A's and B's.
Ingram-Adams's daughter had no formal schooling until about age 7. School psychologists concluded she had attention-deficit hyperactivity disorder, although her foster mother thinks that the diagnosis might be wrong.
Last year, the learning center setting -- 10 students and two teachers, working at an easy pace -- helped the girl gain years of missed reading and math instruction.
"She would get tips on things that would help her learn more math, do better at her reading, practice her writing, her reading comprehension," the mother said. "And she would sometimes get frustrated. But they taught her how to get back the focus, to 'Slow down, close your eyes, count to 10.' "
This year, she has moved effortlessly into the neighborhood middle school.
"She can read chapter books, she can do addition and subtraction, multiplication and division," Ingram-Adams said. "It's just like they gave her the push she needed in school."
But other parents say inclusion has been a disaster, leaving their children bewildered and friendless. They are particularly resentful at being excluded from the decision-making process that doomed the centers. Resentment lingers, even after Weast altered the plan so that all of the roughly 600 students attending the centers could stay through graduation.
Michelle Ryan of Gaithersburg said she was open to the idea of mainstreaming daughter Allyson, 12, who has autism. She wanted Allyson to earn a diploma.
But Allyson was not ready for Forest Oak Middle School. She had a meltdown in the first week of school, "crying and screaming," her mother said. She found her locker, and her classes, only with help from an attentive aide who followed her around.
Today, Allyson is getting B's and C's. But Ryan suspects teachers might be inflating her daughter's grades to make the transition look like a success. Worse, Allyson has begun to feel inferior to her classmates, "and she never had that problem before," her mother said. Isolated from other special-needs students, she has no friends and eats lunch alone.
"Yes, academically, it might be better for her to be mainstreamed, and that was always my goal for her as a parent," Ryan said. "But she wasn't ready."
Autism & Dyslexia - Ambitious new project studies origins
Vol. 18 •Issue 11 • Page 13 Autism & Dyslexia
Ambitious new project studies origins
Two prominent experts in neuroimaging and human brain development will head an ambitious new project to study the origins of autism and dyslexia. Cognitive neuroscientists Nancy Kanwisher, PhD, and John Gabrieli, PhD, will lead the $8.5 million project at the McGovern Institute for Brain Research at MIT in Cambridge, MA.
Autism and dyslexia are complex brain disorders that first appear in early childhood. Little is known about the causes of either disorder, although both are highly heritable. In both cases it is thought that the earlier treatments begin, the more effectively they help the child compensate. Therefore, it is important to develop methods for early diagnosis.
Scientists believe that non-invasive brain-imaging may be a means to this end. Neuroimaging methods have advanced greatly over the last five years, and a major emphasis of the new project will be to translate these advances to pediatric neuroimaging. Brain-imaging with young children presents many challenges, not least of which is their inability to lie still for long periods in the scanner.
Drs. Kanwisher and Gabrieli will collaborate with neuroimaging experts at Massachusetts General Hospital (MGH) in Boston. Larry Wald, PhD, director of the Nuclear Magnetic Resonance Core at the Martinos Center for Biomedical Imaging at MGH; Bruce Fischl, PhD, associate professor of radiology; and Ellen Grant, MD, director of pediatric radiology, will develop scanning coils designed specifically for children's heads, as well as new procedures to shorten scan times and methods to analyze data from brains that are not yet fully developed.
"We expect these technological advances to radically improve pediatric neuroimaging and help us make major strides in understanding typical and atypical human brain development," commented Dr. Kanwisher, a member of the National Academy of Sciences. She will lead the work on autism; and Dr. Gabrieli, a professor of health sciences and technology, will lead the dyslexia component.
The researchers plan to study a cohort of children, scanning them at regular intervals to examine the development of brain systems that have been implicated in social cognition for autism and reading for dyslexia. They hope to include children who are at increased risk for autism or dyslexia, due to their family history, and to compare them to control subjects with no special risk factors.
The investigators also will look at children who already have been diagnosed. They will look for telltale markers that could be useful for diagnosing and tracking the progression of the disorders. They also plan to examine the effects of therapeutic interventions in the hope of identifying markers that will guide the development of more effective therapies.
In the longer term the researchers hope to link their findings to future advances in understanding the genetics of autism and dyslexia. By combining both approaches, Dr. Gabrieli said, eventually it may be possible to develop genetic tests that will be easier and less expensive than brain scans.
He and Dr. Kanwisher also will collaborate with Rebecca Saxe, PhD, assistant professor of neurobiology in the MIT Department of Brain and Cognitive Sciences, who will focus on the development of neural mechanisms for social cognition to identify the earliest stage at which an infant's brain becomes specialized to perceive other people and understand language.
Other collaborators are Laura Schulz, PhD, an assistant professor of cognitive sciences at MIT; April Benasich, PhD, director of the Infancy Studies Laboratory, Center for Molecular & Behavioral Neuroscience, at Rutgers University, in Newark, NJ; Maryanne Wolf, EdD, director of the Reading and Language Research Center at Tufts University, in Medford, MA; David Pauls, PhD, director of the Psychiatric and Neurodevelopmental Genetics Unit at MGH; Matti Hamalainen, PhD, director of the MEG (Magnetoencephalography) Core at the Martinos Center; and Glenn Rosen, PhD, an associate professor of neurology, and Albert Galaburda, MD, a professor of neurology, at Beth Israel Deaconess Medical Center in Boston.
The project is supported by a grant from the Ellison Medical Foundation.
For More Information
McGovern Institute for Brain Research: http://web.mit.edu/mcgovern
Ambitious new project studies origins
Two prominent experts in neuroimaging and human brain development will head an ambitious new project to study the origins of autism and dyslexia. Cognitive neuroscientists Nancy Kanwisher, PhD, and John Gabrieli, PhD, will lead the $8.5 million project at the McGovern Institute for Brain Research at MIT in Cambridge, MA.
Autism and dyslexia are complex brain disorders that first appear in early childhood. Little is known about the causes of either disorder, although both are highly heritable. In both cases it is thought that the earlier treatments begin, the more effectively they help the child compensate. Therefore, it is important to develop methods for early diagnosis.
Scientists believe that non-invasive brain-imaging may be a means to this end. Neuroimaging methods have advanced greatly over the last five years, and a major emphasis of the new project will be to translate these advances to pediatric neuroimaging. Brain-imaging with young children presents many challenges, not least of which is their inability to lie still for long periods in the scanner.
Drs. Kanwisher and Gabrieli will collaborate with neuroimaging experts at Massachusetts General Hospital (MGH) in Boston. Larry Wald, PhD, director of the Nuclear Magnetic Resonance Core at the Martinos Center for Biomedical Imaging at MGH; Bruce Fischl, PhD, associate professor of radiology; and Ellen Grant, MD, director of pediatric radiology, will develop scanning coils designed specifically for children's heads, as well as new procedures to shorten scan times and methods to analyze data from brains that are not yet fully developed.
"We expect these technological advances to radically improve pediatric neuroimaging and help us make major strides in understanding typical and atypical human brain development," commented Dr. Kanwisher, a member of the National Academy of Sciences. She will lead the work on autism; and Dr. Gabrieli, a professor of health sciences and technology, will lead the dyslexia component.
The researchers plan to study a cohort of children, scanning them at regular intervals to examine the development of brain systems that have been implicated in social cognition for autism and reading for dyslexia. They hope to include children who are at increased risk for autism or dyslexia, due to their family history, and to compare them to control subjects with no special risk factors.
The investigators also will look at children who already have been diagnosed. They will look for telltale markers that could be useful for diagnosing and tracking the progression of the disorders. They also plan to examine the effects of therapeutic interventions in the hope of identifying markers that will guide the development of more effective therapies.
In the longer term the researchers hope to link their findings to future advances in understanding the genetics of autism and dyslexia. By combining both approaches, Dr. Gabrieli said, eventually it may be possible to develop genetic tests that will be easier and less expensive than brain scans.
He and Dr. Kanwisher also will collaborate with Rebecca Saxe, PhD, assistant professor of neurobiology in the MIT Department of Brain and Cognitive Sciences, who will focus on the development of neural mechanisms for social cognition to identify the earliest stage at which an infant's brain becomes specialized to perceive other people and understand language.
Other collaborators are Laura Schulz, PhD, an assistant professor of cognitive sciences at MIT; April Benasich, PhD, director of the Infancy Studies Laboratory, Center for Molecular & Behavioral Neuroscience, at Rutgers University, in Newark, NJ; Maryanne Wolf, EdD, director of the Reading and Language Research Center at Tufts University, in Medford, MA; David Pauls, PhD, director of the Psychiatric and Neurodevelopmental Genetics Unit at MGH; Matti Hamalainen, PhD, director of the MEG (Magnetoencephalography) Core at the Martinos Center; and Glenn Rosen, PhD, an associate professor of neurology, and Albert Galaburda, MD, a professor of neurology, at Beth Israel Deaconess Medical Center in Boston.
The project is supported by a grant from the Ellison Medical Foundation.
For More Information
McGovern Institute for Brain Research: http://web.mit.edu/mcgovern
Wednesday, March 19, 2008
Gene for brain connections linked with autism
By Maggie Fox, Health and Science Editor
WASHINGTON (Reuters) - A gene that helps the brain make connections may underlie a significant number of autism cases, researchers in the United States reported on Tuesday.
Disruptions in the gene, called contactin 4, stop the gene from working properly and appear to stop the brain from making proper networks, the researchers reported in the Journal of Medical Genetics.
These disruptions, in which the child has either three copies of the gene or just one copy when two copies is normal, could account for up to 2.5 percent of autism cases, said Dr. Eli Hatchwell of Stony Brook University Medical Center in New York, who led the study.
"That is a significant number," said Hatchwell.
"Generally the mistake that people make is they are looking for one unifying cause for autism, and there is no such thing and there never will be," Hatchwell said in a telephone interview.
He said his finding adds to the list of potential tests for autism, and perhaps treatments for a range of conditions known as autism spectrum disorders.
Hatchwell's team tested 92 patients from 81 families with autism spectrum disorder and compared them to 560 people without autism.
They did a whole genome analysis, looking at the entire DNA map, and found three of the patients had deletions or duplications of DNA that disrupted contactin 4.
They were all inherited from fathers without a history of autism, which can cause severe social and developmental delays and even mental retardation.
This may seem like a small number but millions of people have some type of autism, Hatchwell noted. The U.S. Centers for Disease Control and Prevention estimates that 1 in every 150 children has autism or a related disorder such as Asperger's syndrome, which is marked by often mild social awkwardness.
"Autism is a syndrome. These individuals have all been grouped together as having the same thing. There will be many, many dozens if not hundreds of different causes," he said.
MUTATION PRESENT AT BIRTH
Contactin 4 is involved in the development of axons, which are the long strings that connect one neuron to another. Other
disruptions of this gene are known to cause developmental delay and mental retardation.
The genetic mutation is present at birth, Hatchwell said.
"In each case a father who was reported as normal had the same thing," he added.
"This happens in genetics all the time. Often there are cases in which someone is reported as normal. They pass it on to their child, who has severe disease."
It could be the fathers had mild Asperger's or some other condition that was never diagnosed when they were children. Hatchwell noted that parents today in the United States are far more likely to seek a diagnosis for autism spectrum disorder in their children than parents were in past generations.
This is controversial, with some advocates and experts saying autism and related disorders have become more common in recent years, and others saying there is no evidence this has occurred.
"My personal view is that it is not becoming more prevalent," said Hatchwell. "If a parent has a child with some sort of learning problem, if they get labeled as autism they get all sorts of help at school," he added.
Hatchwell has helped found a biotechnology company called Population Diagnostics Inc. to develop DNA based pre-symptomatic and early detection tests for autism, Alzheimer's, Parkinson's, Type 2 diabetes and other genetic diseases.
In 2004 researchers at Yale University found one child with developmental delays who had a deleted copy of contactin 4. In January, they and two other teams linked a gene called contactin associated protein-like 2 with some cases of autism, and a third team found a stretch of DNA on chromosome 16 that they said may cause 1 percent of autism cases.
(Editing by Cynthia Osterman)
WASHINGTON (Reuters) - A gene that helps the brain make connections may underlie a significant number of autism cases, researchers in the United States reported on Tuesday.
Disruptions in the gene, called contactin 4, stop the gene from working properly and appear to stop the brain from making proper networks, the researchers reported in the Journal of Medical Genetics.
These disruptions, in which the child has either three copies of the gene or just one copy when two copies is normal, could account for up to 2.5 percent of autism cases, said Dr. Eli Hatchwell of Stony Brook University Medical Center in New York, who led the study.
"That is a significant number," said Hatchwell.
"Generally the mistake that people make is they are looking for one unifying cause for autism, and there is no such thing and there never will be," Hatchwell said in a telephone interview.
He said his finding adds to the list of potential tests for autism, and perhaps treatments for a range of conditions known as autism spectrum disorders.
Hatchwell's team tested 92 patients from 81 families with autism spectrum disorder and compared them to 560 people without autism.
They did a whole genome analysis, looking at the entire DNA map, and found three of the patients had deletions or duplications of DNA that disrupted contactin 4.
They were all inherited from fathers without a history of autism, which can cause severe social and developmental delays and even mental retardation.
This may seem like a small number but millions of people have some type of autism, Hatchwell noted. The U.S. Centers for Disease Control and Prevention estimates that 1 in every 150 children has autism or a related disorder such as Asperger's syndrome, which is marked by often mild social awkwardness.
"Autism is a syndrome. These individuals have all been grouped together as having the same thing. There will be many, many dozens if not hundreds of different causes," he said.
MUTATION PRESENT AT BIRTH
Contactin 4 is involved in the development of axons, which are the long strings that connect one neuron to another. Other
disruptions of this gene are known to cause developmental delay and mental retardation.
The genetic mutation is present at birth, Hatchwell said.
"In each case a father who was reported as normal had the same thing," he added.
"This happens in genetics all the time. Often there are cases in which someone is reported as normal. They pass it on to their child, who has severe disease."
It could be the fathers had mild Asperger's or some other condition that was never diagnosed when they were children. Hatchwell noted that parents today in the United States are far more likely to seek a diagnosis for autism spectrum disorder in their children than parents were in past generations.
This is controversial, with some advocates and experts saying autism and related disorders have become more common in recent years, and others saying there is no evidence this has occurred.
"My personal view is that it is not becoming more prevalent," said Hatchwell. "If a parent has a child with some sort of learning problem, if they get labeled as autism they get all sorts of help at school," he added.
Hatchwell has helped found a biotechnology company called Population Diagnostics Inc. to develop DNA based pre-symptomatic and early detection tests for autism, Alzheimer's, Parkinson's, Type 2 diabetes and other genetic diseases.
In 2004 researchers at Yale University found one child with developmental delays who had a deleted copy of contactin 4. In January, they and two other teams linked a gene called contactin associated protein-like 2 with some cases of autism, and a third team found a stretch of DNA on chromosome 16 that they said may cause 1 percent of autism cases.
(Editing by Cynthia Osterman)
Monday, March 17, 2008
Leaders in Assistive Technology
Ray Kurzweil
Ray Kurzweil was the principal developer of the first omni-font optical character recognition, the first print-to-speech reading machine for the blind, the first CCD flat-bed scanner, the first text-to-speech synthesizer, the first music synthesizer capable of recreating the grand piano and other orchestral instruments, and the first commercially marketed large-vocabulary speech recognition. Ray has successfully founded and developed nine businesses in OCR, music synthesis, speech recognition, reading technology, virtual reality, financial investment, cybernetic art, and other areas of artificial intelligence . All of these technologies continue today as market leaders. Ray's Web site, KurzweilAI.net, is a leading resource on artificial intelligence. Ray Kurzweil was inducted in 2002 into the National Inventors Hall of Fame, established by the U.S. Patent Office. He received the $500,000 Lemelson-MIT Prize, the nation's largest award in invention and innovation. He also received the 1999 National Medal of Technology, the nation's highest honor in technology, from President Clinton in a White House ceremony. He has also received scores of other national and international awards, including the 1994 Dickson Prize (Carnegie Mellon University's top science prize), Engineer of the Year from Design News, Inventor of the Year from MIT, and the Grace Murray Hopper Award from the Association for Computing Machinery. He has received twelve honorary Doctorates and honors from three U.S. presidents. He has received seven national and international film awards. Ray's books include The Age of Intelligent Machines, The Age of Spiritual Machines, and Fantastic Voyage: Live Long Enough to Live Forever. Four of Ray's books have been national best sellers and The Age of Spiritual Machines has been translated into 9 languages and was the #1 best selling book on Amazon in science. Ray Kurzweil's new book, published by Viking Press, is entitled The Singularity is Near, When Humans Transcend Biology. Reprinted with permission from Kurzweiltech.com.To comment on this profile, please write to John Williams at jwilliams@atechnews.com.
Ray Kurzweil was the principal developer of the first omni-font optical character recognition, the first print-to-speech reading machine for the blind, the first CCD flat-bed scanner, the first text-to-speech synthesizer, the first music synthesizer capable of recreating the grand piano and other orchestral instruments, and the first commercially marketed large-vocabulary speech recognition. Ray has successfully founded and developed nine businesses in OCR, music synthesis, speech recognition, reading technology, virtual reality, financial investment, cybernetic art, and other areas of artificial intelligence . All of these technologies continue today as market leaders. Ray's Web site, KurzweilAI.net, is a leading resource on artificial intelligence. Ray Kurzweil was inducted in 2002 into the National Inventors Hall of Fame, established by the U.S. Patent Office. He received the $500,000 Lemelson-MIT Prize, the nation's largest award in invention and innovation. He also received the 1999 National Medal of Technology, the nation's highest honor in technology, from President Clinton in a White House ceremony. He has also received scores of other national and international awards, including the 1994 Dickson Prize (Carnegie Mellon University's top science prize), Engineer of the Year from Design News, Inventor of the Year from MIT, and the Grace Murray Hopper Award from the Association for Computing Machinery. He has received twelve honorary Doctorates and honors from three U.S. presidents. He has received seven national and international film awards. Ray's books include The Age of Intelligent Machines, The Age of Spiritual Machines, and Fantastic Voyage: Live Long Enough to Live Forever. Four of Ray's books have been national best sellers and The Age of Spiritual Machines has been translated into 9 languages and was the #1 best selling book on Amazon in science. Ray Kurzweil's new book, published by Viking Press, is entitled The Singularity is Near, When Humans Transcend Biology. Reprinted with permission from Kurzweiltech.com.To comment on this profile, please write to John Williams at jwilliams@atechnews.com.
Bookshare.org Partners With Don Johnston To Provide Free Text Reader For Print Disabled Students
Read:OutLoud® Bookshare.org Edition "Text Reader" Will Provide Technology Access to Thousands of Online Educational MaterialsMarch 13, 2008-Volo, IL and Palo Alto, CA- Bookshare.org and Don Johnston have announced a partnership to provide qualified print disabled students with a free text reader to access electronic books from the Bookshare.org library. This technology access partnership announced at the 2008 CSUN conference in Los Angeles, CA, will serve an estimated 1-3 percent of the total K-12 student population, specifically those who receive special education services and qualify under the 1996 Chafee Amendment. Beginning at the start of the 2008-09 school year, qualified students will have the opportunity to use Don Johnston's Read:OutLoud Bookshare.org Edition text reader (Windows Version) to access more than 36,000 books, magazines and newspapers in the Bookshare.org library. The Read:OutLoud Bookshare.org Edition text reader offers embedded reading comprehension strategies and instructional supports that align with state educational standards. The text reader software includes audio feedback, electronic highlighting and note-taking features that allow students to effectively capture ideas. A Macintosh version will follow in 2009. "Don Johnston and his products have a solid reputation in the special education community," says CSUN keynote speaker Jim Fruchterman, CEO of Benetech, the Palo Alto, California-based nonprofit organization that operates Bookshare.org. "We chose Read:OutLoud because of its strong support tools for students with reading disabilities and its ability to read DAISY files that have the richness that comes from the NIMAS publisher files. Benetech and the team at Don Johnston are working closely together to create more equality for students with learning disabilities and special needs." The goal of this partnership is to help eliminate barriers for print disabled students and provide the tools needed to ensure access to educational texts. Bookshare.org offers digital books produced from the National Instructional Materials Accessibility Standard (NIMAS) and delivers them to students in the BRF Braille file format and the Digital Accessible Information System (DAISY) standard for Digital Talking Books. Don Johnston's Read:OutLoud Bookshare Edition text reader gives students better access to books and effective reading instruction through a direct connection to Bookshare.org's digital texts. "Now that students with the most significant print disabilities will have free technology access to Bookshare.org's library of texts, we want to make sure that they will also benefit from using our technology to improve their reading comprehension skills and study habits," says Ruth Ziolkowski, President of Don Johnston.About Bookshare.org Bookshare.org is an online community that allows people with print disabilities to legally download books and periodicals to be read as Braille, large print or synthetic speech. In October of 2007, Bookshare.org received a $32 million five-year award from the U.S. Department of Education to significantly expand the availability of accessible digital books and software for reading those books. Over the next five years, Bookshare.org expects to add over 100,000 new book titles and textbooks to its collection.About Don Johnston Incorporated Don Johnston empowers educators with supplemental instruction and intervention solutions to help struggling learners build core literacy skills with confidence. Since 1980, the company has partnered with literacy experts, psychologists, teachers, researchers, and scientists to develop over a dozen educational technology access products. The company also publishes Start-to-Finish®, a collection of paperback, audio and computer books to engage struggling readers and ESL learners. To comment on this press release, write to John Williams at jwilliams@atechnews.com.
REFERENCE POINTS: NEW INTERNET COURSE: "READY, WILLING, AND ABLE, ASSISTING PEOPLE WITH DISABILITIES DURING DISASTERS"
REFERENCE POINTS is an activity of TATRA, a project of PACER Center
REFERENCE POINTS: NEW INTERNET COURSE: "READY, WILLING, AND ABLE, ASSISTING PEOPLE WITH DISABILITIES DURING DISASTERS"
Ready, Willing & Able is a free, professional, 2 hour, introductory, online training course offered for independent study and for continuing education. It is designed for public health and hospital staff, health professionals, disaster preparedness managers, emergency response workers, and personnel working with people with disabilities. This course is offered through TRAIN, a project of the Public Health Foundation, funded by a grant from the Robert Wood Johnson Foundation, participating states, and the Centers for Disease Control and prevention. Information about this training can be found at http://www.train.org/ The course name Ready, Willing, & Able and course number 1010882 are necessary to get to the course to register.
REFERENCE POINTS: NEW INTERNET COURSE: "READY, WILLING, AND ABLE, ASSISTING PEOPLE WITH DISABILITIES DURING DISASTERS"
Ready, Willing & Able is a free, professional, 2 hour, introductory, online training course offered for independent study and for continuing education. It is designed for public health and hospital staff, health professionals, disaster preparedness managers, emergency response workers, and personnel working with people with disabilities. This course is offered through TRAIN, a project of the Public Health Foundation, funded by a grant from the Robert Wood Johnson Foundation, participating states, and the Centers for Disease Control and prevention. Information about this training can be found at http://www.train.org/ The course name Ready, Willing, & Able and course number 1010882 are necessary to get to the course to register.
Thursday, March 13, 2008
We are Pleased to Announce the Fall Premier of Autism Spectrum News
The Autism and Mental Health Community
From The Publisher of
The Award-Winning Mental Health News
We are Pleased to Announce the Fall Premier of
Autism Spectrum News
Visit www.mhnews-autism.org For More Details
And to Get On Our Mailing List
Best Regards, Ira H. Minot, LMSW David H. Minot, BAExecutive Director Associate DirectorMental Health News Education, Inc.Publishers of Mental Health News, Salud Mentaland the soon to be published Autism Spectrum News16 Cascade DriveEffort, PA 18330(570) 629-5960 (Phone)mhnmail@aol.com (E-mail)
Mental Health News Education, Inc.Your Award Winning Source of Information, Education, Advocacy & ResourcesFrom The Local, State and National Mental Health ScenePlease visit our Websites:Mental Health News www.mhnews.orgSalud Mental www.mhnews-latino.orgAutism Spectrum News www.mhnews-autism.org
From The Publisher of
The Award-Winning Mental Health News
We are Pleased to Announce the Fall Premier of
Autism Spectrum News
Visit www.mhnews-autism.org For More Details
And to Get On Our Mailing List
Best Regards, Ira H. Minot, LMSW David H. Minot, BAExecutive Director Associate DirectorMental Health News Education, Inc.Publishers of Mental Health News, Salud Mentaland the soon to be published Autism Spectrum News16 Cascade DriveEffort, PA 18330(570) 629-5960 (Phone)mhnmail@aol.com (E-mail)
Mental Health News Education, Inc.Your Award Winning Source of Information, Education, Advocacy & ResourcesFrom The Local, State and National Mental Health ScenePlease visit our Websites:Mental Health News www.mhnews.orgSalud Mental www.mhnews-latino.orgAutism Spectrum News www.mhnews-autism.org
HEALTH CARE NOTEBOOK TRAINING WORKSHOP
HEALTH CARE NOTEBOOK TRAINING
PLEASE NOTE CORRECT DAY & TIMEParent to Parent of NYSWednesday, March 19, 200810:00 AM – 12:00 PM415 A Oser Avenue (LIDDSO)Hauppauge, NY 11788In this informal, hands-on workshop, you'll learn to take yourchild's medical records and related paperwork and create acomprehensive, centralized resource. We provide the binder, formsand instructions. For more information or to register, contact LisaTerenzio at (631) 434-6196 Ext. 12.
PLEASE NOTE CORRECT DAY & TIMEParent to Parent of NYSWednesday, March 19, 200810:00 AM – 12:00 PM415 A Oser Avenue (LIDDSO)Hauppauge, NY 11788In this informal, hands-on workshop, you'll learn to take yourchild's medical records and related paperwork and create acomprehensive, centralized resource. We provide the binder, formsand instructions. For more information or to register, contact LisaTerenzio at (631) 434-6196 Ext. 12.
Wednesday, March 12, 2008
Workshop: Benefit Planning for Students with Disabilities
Long Island Transition Coordination Site
Benefit Planning for Students with Disabilities
Save the Date
Thursday, March 27, 2008
Nassau BOCES Administration Center
71 Clinton Road
Garden City
7:00pm – 9:00 pm
Joan Ryan, Transition Specialist – OMRDD
Paola Nappo, Director of Placement – VESID
Social Security
Students with disabilities often need individualized career, benefit and residential planning. This presentation will provide an overview of benefit planning (SSI, SSD, Medicaid/Medicare). Representatives from the NYS Office of Vocational and Educational Services for Individuals with Disabilities (VESID) and the NYS Office of Mental Retardation and Developmental Disabilities (OMRDD), as well as a Social Security Benefits Specialist will be available to answer your questions and provide you with all the necessary resources. VESID and OMRDD (which provide funding for both vocational and residential services) will explain the role their agencies play to promote and include persons with disabilities in the areas of employment and post-secondary education.
For further information and/or to reserve a seat please call Suffolk SETRC 631-473-1397
The Eastern Suffolk BOCES does not discriminate against any employee, student, applicant for employment or candidate for enrollment on the basis of gender, race, color, religion or creed, age, national origin, marital status, disability or any other classification protected by law.
Benefit Planning for Students with Disabilities
Save the Date
Thursday, March 27, 2008
Nassau BOCES Administration Center
71 Clinton Road
Garden City
7:00pm – 9:00 pm
Joan Ryan, Transition Specialist – OMRDD
Paola Nappo, Director of Placement – VESID
Social Security
Students with disabilities often need individualized career, benefit and residential planning. This presentation will provide an overview of benefit planning (SSI, SSD, Medicaid/Medicare). Representatives from the NYS Office of Vocational and Educational Services for Individuals with Disabilities (VESID) and the NYS Office of Mental Retardation and Developmental Disabilities (OMRDD), as well as a Social Security Benefits Specialist will be available to answer your questions and provide you with all the necessary resources. VESID and OMRDD (which provide funding for both vocational and residential services) will explain the role their agencies play to promote and include persons with disabilities in the areas of employment and post-secondary education.
For further information and/or to reserve a seat please call Suffolk SETRC 631-473-1397
The Eastern Suffolk BOCES does not discriminate against any employee, student, applicant for employment or candidate for enrollment on the basis of gender, race, color, religion or creed, age, national origin, marital status, disability or any other classification protected by law.
“WORKING TOGETHER” COLLABORATIVE CONFERENCE ON AUTISM
March 28 & 29, 2008
New York Academy of Medicine – New York City
In a collaborative effort to disseminate accurate and useful information about the provision of effective education services for individuals with autism spectrum disorders, Alpine Learning Group, Connecticut Center for Child Development, Eden II Programs and Nassau-Suffolk Services for Autism have joined together again to host their 6th annual conference entitled, "WORKING TOGETHER: SYSTEMS AND STRATEGIES FOR IMPROVING OUTCOMES FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS" to be held at the New York Academy of Medicine in New York City on March 28 & 29, 2008. The conference will draw on the expertise of prominent researchers and practitioners in the field of autism and will cover a wide variety of topics.
For further information, to receive the conference brochure, register for the conference, or inquire about sponsorship, journal advertising and exhibit/vending information, please contact 631.462.0386 or mbennett@eden2.org. The conference brochure can also be viewed online at www.eden2.org. CEUs for SLPs, BCBAs, and BACBAs will be offered.
***********************************************************************************
CONFERENCE AGENDA
Friday, March 23, 2007 - 9:00 a.m. – 4:15 p.m.
9:00 a.m. – 10:15 a.m.
Keynote Presentation: The Social Brain in Autism
Presenter: Robert T. Schultz, PhD
10:30 a.m. – 12:00 p.m.
Breakout Session 1:
Feeding, Nutrition, and Diet in the Child with Autism
Presenters: SUSAN HYMAN, MD
Fitting In and Having Fun Strategies for Enhancing Social Competency
Presenter: TERESE DANA
Successful Transition from an Individualized Education Plan to an Individualized Vocational Plan
NICOLE WEIDENBAUM, MS Ed, SAS, JASON WATSON
Dealing with Challenging Behavior: A Decision Tree
Judith L. Palazzo, MS, BCBA, AIMEE HARAY
12:00 p.m. – 1:00 p.m. LUNCH (provided)
1:00 a.m. – 2:30 p.m. - Breakout Session 2:
No More Meltdowns: Creating Behavioral Support Plans for Students with Autism Spectrum Disorders
JED BAKER, PhD
Peer Mentoring: Teaching Typically Developing Children to Instruct Children with Autism in a Public School
MOIRA CRAY, LMSW, JULIE FISHER, LMSW, BCBA
Augmentative Communication Devices and Autism: Assessment to Intervention
KATE CERINO BRITTON, MS Ed, MA, JAIME SCHILLING, MS
Increasing Independence for Maximum Success
BRIDGET TAYLOR, PsyD, BCBA, HANNAH HOCH, PhD, BCBA
2:45 p.m. – 4:15 p.m. - Breakout Session 3:
Key Components of Social Skills Training for Student with Autism Spectrum Disorders
JED BAKER, PhD
Promoting Language in Individuals with ASD: What’s New?
JOANNE GERENSER, PhD, CCC-SLP
Making Learning Fun
JILL CASTELLANI, MS, BCBA, KRISTINE MARINO, BCABA
Applying Behavior Strategies to Address Staff Retention and Development: Promoting Quality Outcomes
EILEEN HOPKINS, PhD, RANDY HOROWITZ, MS Ed, SAS
POST-CONFERENCE WORKSHOP
Saturday, March 29, 2008
9:00 a.m. – 4:00 p.m.
Workshop 1:
The Use of Assistive Technology to Increase Functional Skills in Individuals With Autism Spectrum Disorders
MICHAEL J. CUNNINGHAM, MS, Ed, MS, CCC-SLP
Workshop 2:
Innovative Teaching to Accelerate Student Progress
MARY McDONALD, PhD, CCC-SLP, NICOLE WEIDENBAUM, M.S. Ed., SAS,
STACEY AGOSTA, MS, DEBORAH ASTMAN, MS Ed, ELIZABETH BOYD, JACQUIE FRANGOULIS, MS Ed
************************************************************************************
Conference Registration Form
Please complete and mail with payment information to:
Collaborative Conference c/o NSSA
80 Hauppauge Road
Commack, NY 11725
If paying by check, please make checks payable to: NSSA
For further information, contact 631-462-0386
Name
Organization
Check One: ___ Parent ___Professional ___Student
Address:
City State Zipcode
Phone Number: Email
Conference registration fee includes: attendance, conference material, continental breakfast, and buffet lunch.
__$150 – Conference
__$125 – Post-Conference Workshop
__$250 – Conference & Post-Conference Workshop
Walk Ins (subject to availability):
__$175 – Conference
__$150 – Post-Conference Workshop
__$275 – Conference & Post-Conference Workshop
Breakout Session Choices: Every effort will be made to accommodate your choices, however, seating s limited and will be determined on a first come first served basis.
___ Workshop- Day One
___ Conference- Day Two
Session 1: (circle one) 1 2 3 4
Session 2: (circle one) 5 6 7 8
Session 3: (circle one) 9 10 11 12
Refund Policy: No refunds after March 20, 2008. All refunds subject to a $20 processing fee.
Payment Method:
Purchase Order Payment: Please enclose your purchase order with your registration form.
Check Payment: Please make all checks payable to NSSA
Credit Card Payment:
___ Visa
___MasterCard
___American Express
Security Code #:_____
Card Number: Expiration Date
Signature:
To receive a brochure, contact 631-462-0386 or view on www.eden2.org.
New York Academy of Medicine – New York City
In a collaborative effort to disseminate accurate and useful information about the provision of effective education services for individuals with autism spectrum disorders, Alpine Learning Group, Connecticut Center for Child Development, Eden II Programs and Nassau-Suffolk Services for Autism have joined together again to host their 6th annual conference entitled, "WORKING TOGETHER: SYSTEMS AND STRATEGIES FOR IMPROVING OUTCOMES FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS" to be held at the New York Academy of Medicine in New York City on March 28 & 29, 2008. The conference will draw on the expertise of prominent researchers and practitioners in the field of autism and will cover a wide variety of topics.
For further information, to receive the conference brochure, register for the conference, or inquire about sponsorship, journal advertising and exhibit/vending information, please contact 631.462.0386 or mbennett@eden2.org. The conference brochure can also be viewed online at www.eden2.org. CEUs for SLPs, BCBAs, and BACBAs will be offered.
***********************************************************************************
CONFERENCE AGENDA
Friday, March 23, 2007 - 9:00 a.m. – 4:15 p.m.
9:00 a.m. – 10:15 a.m.
Keynote Presentation: The Social Brain in Autism
Presenter: Robert T. Schultz, PhD
10:30 a.m. – 12:00 p.m.
Breakout Session 1:
Feeding, Nutrition, and Diet in the Child with Autism
Presenters: SUSAN HYMAN, MD
Fitting In and Having Fun Strategies for Enhancing Social Competency
Presenter: TERESE DANA
Successful Transition from an Individualized Education Plan to an Individualized Vocational Plan
NICOLE WEIDENBAUM, MS Ed, SAS, JASON WATSON
Dealing with Challenging Behavior: A Decision Tree
Judith L. Palazzo, MS, BCBA, AIMEE HARAY
12:00 p.m. – 1:00 p.m. LUNCH (provided)
1:00 a.m. – 2:30 p.m. - Breakout Session 2:
No More Meltdowns: Creating Behavioral Support Plans for Students with Autism Spectrum Disorders
JED BAKER, PhD
Peer Mentoring: Teaching Typically Developing Children to Instruct Children with Autism in a Public School
MOIRA CRAY, LMSW, JULIE FISHER, LMSW, BCBA
Augmentative Communication Devices and Autism: Assessment to Intervention
KATE CERINO BRITTON, MS Ed, MA, JAIME SCHILLING, MS
Increasing Independence for Maximum Success
BRIDGET TAYLOR, PsyD, BCBA, HANNAH HOCH, PhD, BCBA
2:45 p.m. – 4:15 p.m. - Breakout Session 3:
Key Components of Social Skills Training for Student with Autism Spectrum Disorders
JED BAKER, PhD
Promoting Language in Individuals with ASD: What’s New?
JOANNE GERENSER, PhD, CCC-SLP
Making Learning Fun
JILL CASTELLANI, MS, BCBA, KRISTINE MARINO, BCABA
Applying Behavior Strategies to Address Staff Retention and Development: Promoting Quality Outcomes
EILEEN HOPKINS, PhD, RANDY HOROWITZ, MS Ed, SAS
POST-CONFERENCE WORKSHOP
Saturday, March 29, 2008
9:00 a.m. – 4:00 p.m.
Workshop 1:
The Use of Assistive Technology to Increase Functional Skills in Individuals With Autism Spectrum Disorders
MICHAEL J. CUNNINGHAM, MS, Ed, MS, CCC-SLP
Workshop 2:
Innovative Teaching to Accelerate Student Progress
MARY McDONALD, PhD, CCC-SLP, NICOLE WEIDENBAUM, M.S. Ed., SAS,
STACEY AGOSTA, MS, DEBORAH ASTMAN, MS Ed, ELIZABETH BOYD, JACQUIE FRANGOULIS, MS Ed
************************************************************************************
Conference Registration Form
Please complete and mail with payment information to:
Collaborative Conference c/o NSSA
80 Hauppauge Road
Commack, NY 11725
If paying by check, please make checks payable to: NSSA
For further information, contact 631-462-0386
Name
Organization
Check One: ___ Parent ___Professional ___Student
Address:
City State Zipcode
Phone Number: Email
Conference registration fee includes: attendance, conference material, continental breakfast, and buffet lunch.
__$150 – Conference
__$125 – Post-Conference Workshop
__$250 – Conference & Post-Conference Workshop
Walk Ins (subject to availability):
__$175 – Conference
__$150 – Post-Conference Workshop
__$275 – Conference & Post-Conference Workshop
Breakout Session Choices: Every effort will be made to accommodate your choices, however, seating s limited and will be determined on a first come first served basis.
___ Workshop- Day One
___ Conference- Day Two
Session 1: (circle one) 1 2 3 4
Session 2: (circle one) 5 6 7 8
Session 3: (circle one) 9 10 11 12
Refund Policy: No refunds after March 20, 2008. All refunds subject to a $20 processing fee.
Payment Method:
Purchase Order Payment: Please enclose your purchase order with your registration form.
Check Payment: Please make all checks payable to NSSA
Credit Card Payment:
___ Visa
___MasterCard
___American Express
Security Code #:_____
Card Number: Expiration Date
Signature:
To receive a brochure, contact 631-462-0386 or view on www.eden2.org.
INFORMATIVE EVENING ABOUT CANINE COMPANIONS FOR INDEPENDENCE
RE-SCHEDULED FROM AN EARLIER DATE
ALL ARE WELCOME TO AN INFORMATIVE EVENING ABOUT
CANINE COMPANIONS FOR
INDEPENDENCE (“CCI”)
CCI trains service dogs to assist
disabled children and adults
TEMPLE HILLEL
1000 Rosedale Road, North Woodmere, NY 11581
TUESDAY EVENING APRIL 8TH
7:30 PM
In addition to having CCI dog trainers on hand to provide you with information and answer any questions, we will have service dogs in training as well!
Everyone is invited to learn more about this wonderful service organization, and how CCI service dogs can help you, your family and friends.
For more information, please call Alice Laby: 791 5719
ALL ARE WELCOME TO AN INFORMATIVE EVENING ABOUT
CANINE COMPANIONS FOR
INDEPENDENCE (“CCI”)
CCI trains service dogs to assist
disabled children and adults
TEMPLE HILLEL
1000 Rosedale Road, North Woodmere, NY 11581
TUESDAY EVENING APRIL 8TH
7:30 PM
In addition to having CCI dog trainers on hand to provide you with information and answer any questions, we will have service dogs in training as well!
Everyone is invited to learn more about this wonderful service organization, and how CCI service dogs can help you, your family and friends.
For more information, please call Alice Laby: 791 5719
Monday, March 10, 2008
Autism Debate Go-To Blogs
Autism Debate Go-To Blogs
By Matthew Herper
Forbes.com
There's been quite a bit of hubbub in the blogosphere about the U.S. government's decision to concede that vaccines may have caused autism-like symptoms in one little girl. Anti-vaccine activists have used the case to argue that a chink has appeared in the government's armor. Government officials and researchers counter that the girl had a disorder related to her mitochondria, not just autism, and that little has changed from either a legal or scientific perspective. The girl's father believes that the benefits of vaccines outweigh the risks. (See this WebMD story.)
You can read plenty about this elswhere on the Web. Here are some great places to start.
Autism Vox is one of my favorite blogs about not just autism, but anything. It's written by Kristina Chew, a Ph.D. in classics who has an autistic son. It is by turns personal and erudite, with a real appreciation for what the science on autism actually says.
Neurologica is a good place to go for a neurologist's perspective. Blogger Steven Novella practices at the Yale University School of Medicine and is president of the New England Skeptical Society.
Stop. Think. Autism. is another thoughtful blog by the parent of an autistic child. Her writing is movingly straightforward, and she's good at finding appropriate articles in the scientific literature.
Respectful Insulence is written by a surgeon who goes by the nom-de-blog Orac. He blogs on this issue so often that I'm beginning he has some kind of alarm that goes off when someone, somewhere tries to point to vaccines as the primary cause of autism.
By Matthew Herper
Forbes.com
There's been quite a bit of hubbub in the blogosphere about the U.S. government's decision to concede that vaccines may have caused autism-like symptoms in one little girl. Anti-vaccine activists have used the case to argue that a chink has appeared in the government's armor. Government officials and researchers counter that the girl had a disorder related to her mitochondria, not just autism, and that little has changed from either a legal or scientific perspective. The girl's father believes that the benefits of vaccines outweigh the risks. (See this WebMD story.)
You can read plenty about this elswhere on the Web. Here are some great places to start.
Autism Vox is one of my favorite blogs about not just autism, but anything. It's written by Kristina Chew, a Ph.D. in classics who has an autistic son. It is by turns personal and erudite, with a real appreciation for what the science on autism actually says.
Neurologica is a good place to go for a neurologist's perspective. Blogger Steven Novella practices at the Yale University School of Medicine and is president of the New England Skeptical Society.
Stop. Think. Autism. is another thoughtful blog by the parent of an autistic child. Her writing is movingly straightforward, and she's good at finding appropriate articles in the scientific literature.
Respectful Insulence is written by a surgeon who goes by the nom-de-blog Orac. He blogs on this issue so often that I'm beginning he has some kind of alarm that goes off when someone, somewhere tries to point to vaccines as the primary cause of autism.
Working Dad: Rise in childhood mental illness is perplexing
Working Dad: Rise in childhood mental illness is perplexing
By PAUL NYHANP-I REPORTER
Scrambled eggs and toast were on the kitchen table, a soccer game began in an hour and October sun poured into Elizabeth Coplan's Seattle-area home.
Yet it was 11 a.m., and her 10-year-old son would not get out of bed, remaining tucked under his covers more like a teenager than a fourth-grader.
It was the latest of yellow flags that had been waving since Mark Coplan was born that something was wrong: night terrors, lips rubbed until bleeding, recurring stomach aches, aversion to smell, and never much sleep, maybe four hours a night for mother and son.
By the time her son was 6, a psychiatrist told Coplan the boy suffered from depression, the youngest case she had ever diagnosed, and gave him what would be the first in a series of medications.
"There is nothing worse than having a 10-year-old on a bright sunny day refuse to get up," said Coplan, 53, about that day three years ago. "There were times he was just so sad you couldn't get him to do anything."
Today, a growing number of younger children are diagnosed with depression, attention-deficit (hyperactivity) disorder and any number of other mental illnesses. Overall, 10 million children struggle with psychiatric disorders, according to New York University's Child Study Center.
Today's parent lives in an era of diagnosis. Even if a child isn't coping with a mental disorder, fear often lurks in the back of a parent's mind, put there partly by a drumbeat of persistent media coverage.
Sometimes it seems treatment is struggling to catch up and adapt to this fast-changing and expanding group of children. Health professionals seemingly worry about everything: misdiagnosis, underdiagnosis, overdiagnosis and use of medication.
There even is plenty of debate about what childhood mental illness is and how to treat it, though parents are taking a greater role in treatment.
Those parents, meanwhile, struggle with their own dread that it can mean a lifelong struggle for their children.
"I think the term mental illness is so scary for parents because it sounds like this is going to be persistent, and it's never going to go away," said Dr. Eric Trupin, a professor in the University of Washington's Psychiatry and Behavior Department.
The reality is that mental illness exists among children, but children also change, and a problem in an 8-year-old may be manageable a few years later, Trupin said.
At the same time, psychiatrists, or more often pediatricians, are detecting mental illness in younger children, as the stigma lightens and awareness grows, experts say.
When Elizabeth Coplan was looking for help 10 years ago, it was a different story.
After numerous doctor visits it became obvious her son's ailment wasn't physical, yet she spent the next eight years figuring out what it was.
At age 3, it was sensory integration disorder with traits of autism, though not a full-blown case. By age 5, it was general anxiety disorder, and the kindergartener was given small doses of Valium to help with sleep.
"I was so numb I didn't ask the right questions," Coplan said. "I just blindly filled the prescription because by then both my son and I were suffering six years of sleep deprivation."
Then he turned 6, and his psychiatrist told the family he had depression.
"You want your 6-year-old to be smiling, and if he's not, your heart breaks," Coplan said.
Over the next five years, Mark Coplan, who asked that his first name be changed for this story, tried a series of medications -- the antidepressants Trazodone, Remeron, Wellbutrin and Zoloft, and the hypertension drug Clonidine -- as well as therapy, but nothing worked for long.
Meanwhile, Elizabeth Coplan developed her own symptoms, including fibromyalgia and exhaustion. When her son didn't sleep, neither did she.
Finally, they hit on Paxil, another antidepressant that offered steady improvement, while Mark developed new coping skills, such as learning to leave situations and play piano when stressed.
Then he turned 11 and eased off everything.
But Elizabeth Coplan still struggled, frustrated with the little help she found around Seattle.
"Eleven years ago when I was going through this there were no resources," Coplan said.
In response, two years ago Coplan helped to create the Seattle-based Web site and blog support group A Wild Ride, where struggling parents, with or without diagnosed children, share stories, find resources and get child-rearing tips.
Perhaps the biggest problem facing Coplan and other parents is an acute shortage of child psychiatrists, only 6,000 for the nation's 73 million children, according to Dr. Christopher Lucas, an associate professor of child and adolescent psychiatry at New York University's Child Center.
The shortage means pediatricians are the nation's primary screeners for childhood mental health.
"I don't think you can make a diagnosis of depression in a 10-minute doctor visit, you just can't," said Dr. James Parker, a child psychiatrist at Group Health Cooperative in Seattle.
The challenge is only complicated by diagnoses that often are simplistic or poor, Lucas added.
The good news is resources slowly are improving in Seattle and nationally for mental illness and behavioral problems among children.
These days, Mark Coplan also is markedly improved. He is a typical 13-year-old who plays on a select soccer squad, earns A's and sleeps in a room plastered with posters of Jimi Hendrix, Rage Against the Machine and Kurt Cobain, and littered with clothes.
"I feel like every other kid," he said last week.
His mother still worries, but last week Mark offered her some assurance.
"I've gotten over it once and I can do it again, with a little help from my family."
A GUIDE FOR PARENTS
Childhood mental illness is a complicated, confusing and difficult challenge that should be handled by trained medical professionals. Experts advise parents to follow these guidelines in observing their children:
· Watch for anxiety. It can be an early sign of depression.
· Talk to your kids. They often will tell you how they are doing.
· Eat dinner together.
· Trust your gut instincts about your own child.
· Share concerns with your pediatrician.
· Learn what you can about a diagnosed disorder.
· Take care of yourself.
Resources:
· A Wild Ride: awildride.net
· National Alliance on Mental Illness Greater Seattle, 206-783-9264, nami-greaterseattle.org
· New York University Child Study Center, 212-263-6622, aboutourkids.org
SOURCES: NYU Child Study Center, University of Washington Department of Psychiatry and Behavior, NAMI Greater Seattle
By PAUL NYHANP-I REPORTER
Scrambled eggs and toast were on the kitchen table, a soccer game began in an hour and October sun poured into Elizabeth Coplan's Seattle-area home.
Yet it was 11 a.m., and her 10-year-old son would not get out of bed, remaining tucked under his covers more like a teenager than a fourth-grader.
It was the latest of yellow flags that had been waving since Mark Coplan was born that something was wrong: night terrors, lips rubbed until bleeding, recurring stomach aches, aversion to smell, and never much sleep, maybe four hours a night for mother and son.
By the time her son was 6, a psychiatrist told Coplan the boy suffered from depression, the youngest case she had ever diagnosed, and gave him what would be the first in a series of medications.
"There is nothing worse than having a 10-year-old on a bright sunny day refuse to get up," said Coplan, 53, about that day three years ago. "There were times he was just so sad you couldn't get him to do anything."
Today, a growing number of younger children are diagnosed with depression, attention-deficit (hyperactivity) disorder and any number of other mental illnesses. Overall, 10 million children struggle with psychiatric disorders, according to New York University's Child Study Center.
Today's parent lives in an era of diagnosis. Even if a child isn't coping with a mental disorder, fear often lurks in the back of a parent's mind, put there partly by a drumbeat of persistent media coverage.
Sometimes it seems treatment is struggling to catch up and adapt to this fast-changing and expanding group of children. Health professionals seemingly worry about everything: misdiagnosis, underdiagnosis, overdiagnosis and use of medication.
There even is plenty of debate about what childhood mental illness is and how to treat it, though parents are taking a greater role in treatment.
Those parents, meanwhile, struggle with their own dread that it can mean a lifelong struggle for their children.
"I think the term mental illness is so scary for parents because it sounds like this is going to be persistent, and it's never going to go away," said Dr. Eric Trupin, a professor in the University of Washington's Psychiatry and Behavior Department.
The reality is that mental illness exists among children, but children also change, and a problem in an 8-year-old may be manageable a few years later, Trupin said.
At the same time, psychiatrists, or more often pediatricians, are detecting mental illness in younger children, as the stigma lightens and awareness grows, experts say.
When Elizabeth Coplan was looking for help 10 years ago, it was a different story.
After numerous doctor visits it became obvious her son's ailment wasn't physical, yet she spent the next eight years figuring out what it was.
At age 3, it was sensory integration disorder with traits of autism, though not a full-blown case. By age 5, it was general anxiety disorder, and the kindergartener was given small doses of Valium to help with sleep.
"I was so numb I didn't ask the right questions," Coplan said. "I just blindly filled the prescription because by then both my son and I were suffering six years of sleep deprivation."
Then he turned 6, and his psychiatrist told the family he had depression.
"You want your 6-year-old to be smiling, and if he's not, your heart breaks," Coplan said.
Over the next five years, Mark Coplan, who asked that his first name be changed for this story, tried a series of medications -- the antidepressants Trazodone, Remeron, Wellbutrin and Zoloft, and the hypertension drug Clonidine -- as well as therapy, but nothing worked for long.
Meanwhile, Elizabeth Coplan developed her own symptoms, including fibromyalgia and exhaustion. When her son didn't sleep, neither did she.
Finally, they hit on Paxil, another antidepressant that offered steady improvement, while Mark developed new coping skills, such as learning to leave situations and play piano when stressed.
Then he turned 11 and eased off everything.
But Elizabeth Coplan still struggled, frustrated with the little help she found around Seattle.
"Eleven years ago when I was going through this there were no resources," Coplan said.
In response, two years ago Coplan helped to create the Seattle-based Web site and blog support group A Wild Ride, where struggling parents, with or without diagnosed children, share stories, find resources and get child-rearing tips.
Perhaps the biggest problem facing Coplan and other parents is an acute shortage of child psychiatrists, only 6,000 for the nation's 73 million children, according to Dr. Christopher Lucas, an associate professor of child and adolescent psychiatry at New York University's Child Center.
The shortage means pediatricians are the nation's primary screeners for childhood mental health.
"I don't think you can make a diagnosis of depression in a 10-minute doctor visit, you just can't," said Dr. James Parker, a child psychiatrist at Group Health Cooperative in Seattle.
The challenge is only complicated by diagnoses that often are simplistic or poor, Lucas added.
The good news is resources slowly are improving in Seattle and nationally for mental illness and behavioral problems among children.
These days, Mark Coplan also is markedly improved. He is a typical 13-year-old who plays on a select soccer squad, earns A's and sleeps in a room plastered with posters of Jimi Hendrix, Rage Against the Machine and Kurt Cobain, and littered with clothes.
"I feel like every other kid," he said last week.
His mother still worries, but last week Mark offered her some assurance.
"I've gotten over it once and I can do it again, with a little help from my family."
A GUIDE FOR PARENTS
Childhood mental illness is a complicated, confusing and difficult challenge that should be handled by trained medical professionals. Experts advise parents to follow these guidelines in observing their children:
· Watch for anxiety. It can be an early sign of depression.
· Talk to your kids. They often will tell you how they are doing.
· Eat dinner together.
· Trust your gut instincts about your own child.
· Share concerns with your pediatrician.
· Learn what you can about a diagnosed disorder.
· Take care of yourself.
Resources:
· A Wild Ride: awildride.net
· National Alliance on Mental Illness Greater Seattle, 206-783-9264, nami-greaterseattle.org
· New York University Child Study Center, 212-263-6622, aboutourkids.org
SOURCES: NYU Child Study Center, University of Washington Department of Psychiatry and Behavior, NAMI Greater Seattle
Friday, March 7, 2008
Announcing Glimpse: A new online literary magazine presents works by artists with autism and other developmental challenges
Washington, D.C., March 5, 2008 (ICDL). The premier issue of America’s first online literary magazine featuring works by people with autism and other developmental challenges offers more than a Glimpse into the rich, creative inner life of these individuals. Remarkable as both art and insight, these poems, short essays, paintings, drawings, and photography broaden our understanding of the creative processes in all of us.
Following are excerpts from the premier edition:
“If I go for a walk in the forest with a friend and they’re talking, I may as well be at home for I’ve missed the trees and the sounds; all I experience is their voice. If I notice the beauty around me I miss everything they said as I was focusing on the forest sights. So often I go on walks alone, but even then I find while walking I’m missing a lot of the forest. So I stop and enjoy a beautiful tree, but then find I’m missing the sounds and begin to immerse myself in the sounds of the birds and the leaves and even though my eyes are open I literally can not see the tree, my vision is blank. Then I flash back to the tree without planning to and it snaps me out of the trance I was in listening to the sounds. And so it goes.” Michael Moon in “ Autistic/Artistic”
“PLEASE LISTEN TO MY HEART
PLEASE FORGIVE THESE CLUMSY WORDS
JUST HEAR ME FROM MY OPEN HEART TO YOURS
THE LANGUAGE OF MY HEART SPEAKS ELOQUENTLY
WHILE MY FINGERS GRAPPLE FOR THE LETTERS ONE AT A TIME.
MY MOUTH HAS NOTHING TO SAY.” From “ Please Listen to My Heart” by Roy Bedford
Glimpse is published by the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), a non-profit organization dedicated to improving the prevention, assessment, diagnosis, and treatment of emotional and developmental disorders in infancy and childhood by promoting dialogue and integrating knowledge from different disciplines.
Please click here to access a PDF version of Glimpse:
http://www.icdl.com/bookstore/glimpse/documents/GLIMPSE-1308.pdf
For more information about Glimpse, including submission guidelines, please visit www.icdl.com or contact the editors at Glimpse@icdl.com.
Contact:
Lori Jeanne Peloquin (co-editor): 585-697-0944 X91 or Glimpse@icdl.com or
Natasha Labbe: 240-421-0606 or nlabbe@icdl.com
Following are excerpts from the premier edition:
“If I go for a walk in the forest with a friend and they’re talking, I may as well be at home for I’ve missed the trees and the sounds; all I experience is their voice. If I notice the beauty around me I miss everything they said as I was focusing on the forest sights. So often I go on walks alone, but even then I find while walking I’m missing a lot of the forest. So I stop and enjoy a beautiful tree, but then find I’m missing the sounds and begin to immerse myself in the sounds of the birds and the leaves and even though my eyes are open I literally can not see the tree, my vision is blank. Then I flash back to the tree without planning to and it snaps me out of the trance I was in listening to the sounds. And so it goes.” Michael Moon in “ Autistic/Artistic”
“PLEASE LISTEN TO MY HEART
PLEASE FORGIVE THESE CLUMSY WORDS
JUST HEAR ME FROM MY OPEN HEART TO YOURS
THE LANGUAGE OF MY HEART SPEAKS ELOQUENTLY
WHILE MY FINGERS GRAPPLE FOR THE LETTERS ONE AT A TIME.
MY MOUTH HAS NOTHING TO SAY.” From “ Please Listen to My Heart” by Roy Bedford
Glimpse is published by the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), a non-profit organization dedicated to improving the prevention, assessment, diagnosis, and treatment of emotional and developmental disorders in infancy and childhood by promoting dialogue and integrating knowledge from different disciplines.
Please click here to access a PDF version of Glimpse:
http://www.icdl.com/bookstore/glimpse/documents/GLIMPSE-1308.pdf
For more information about Glimpse, including submission guidelines, please visit www.icdl.com or contact the editors at Glimpse@icdl.com.
Contact:
Lori Jeanne Peloquin (co-editor): 585-697-0944 X91 or Glimpse@icdl.com or
Natasha Labbe: 240-421-0606 or nlabbe@icdl.com
Thursday, March 6, 2008
How About Not 'Curing' Us, Some Autistics Are Pleading
By AMY HARMON Published: December 20, 2004
Correction Appended
BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.
"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."
From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.
"People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."
That, at least, was what happened to these students at mainstream schools before they found refuge here.
But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to "act autistic" and also how to get by in a world where it is not.
Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest. This year's class includes specialists on supervolcanoes and medieval weaponry.
"Look at Jack," Justin pointed out. "He doesn't even need a map. He's like a living map."
The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger's - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.
It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition. But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children. Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.
The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed. Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away. Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.
Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to "defend the dignity of autistic citizens." The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year.
"We need acceptance about who we are and the way we are," said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. "That means you have to get out of the cure mind-set."
A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.
The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness. Some worry that in addition to troublesome interventions, the ultimate cure will be a genetic test to prevent autistic children from being born.
That would be a loss, they say, not just for social tolerance but because autistics, with their obsessive attention to detail and eccentric perspective, can provide valuable insight and innovation. The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic.
"What they're saying is their goal is to create a world that has no people like us in it," said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay "Don't Mourn for Us" serves as a touchstone for a fledgling movement.
At this year's "Autreat," an annual spring gathering of autistics, attendees compared themselves to gay rights activists, or the deaf who prefer sign language over surgery that might allow them to hear. Some discussed plans to be more openly autistic in public, rather than take the usual elaborate measures to fit in. Others vowed to create more autistic-friendly events and spaces.
Autreat participants, for instance, can wear color-coded badges that indicate whether they are willing to be approached for conversation. Common autistic mannerisms, like exceedingly literal conversation and hand-flapping, are to be expected. Common sources of autistic irritation, like casual hugs and fluorescent lighting, are not.
For many parents, however, the autistic self-advocacy movement often sounds like a threat to the brighter future they envision for their children. In recent months, the long-simmering argument has erupted into an online brawl over the most humane way to handle an often crippling condition.
On e-mail lists frequented by autistics, some parents are derided as "curebies" and portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating. Parents argue that their antagonists are showing a typical autistic lack of empathy by suggesting that they should not try to help their children. It is only those whose diagnosis describes them as "high functioning" or having Asperger's syndrome, they say, who are opposed to a cure.
"If those who raise their opposition to the so-called oppression of the autistic would simply substitute their usage of 'autism or autistic' with 'Asperger's,' their arguments might make some sense," Lenny Schafer, publisher of the widely circulated Schafer Autism Report, wrote in a recent e-mail message. "But I intend to cure, fix, repair, change over etc. my son and others like him of his profound and typical disabling autism into something better. Let us regain our common sense."
But the autistic activists say it is not so easy to distinguish between high and low functioning, and their ranks include both.
In an effort to refute parental skeptics, the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments. None of them are fully toilet-trained, one of them cannot speak, and they have all injured themselves on multiple occasions, they wrote: "We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic."
The touchiest area of dispute is over Applied Behavior Analysis, or A.B.A., the therapy that many parents say is the only way their children were able to learn to make eye contact, talk and get through the day without throwing tantrums. Some autistic adults, including some who have had the therapy, say that at its best it trains children to repress their natural form of expression and at its worst borders on being abusive. If an autistic child who screams every time he is taken to the supermarket is trained not to, for example, he may still be experiencing pain from the fluorescent lights and crush of strangers.
"Behaviors are so often attempts to communicate," said Jane Meyerding, an autistic woman who has a clerical job at the University of Washington and is a frequent contributor to the Autistic Advocacy e-mail discussion list. "When you snuff out the behaviors you snuff out the attempts to communicate."
Perhaps the most public conflict between parents and adult autistics came in a lawsuit brought by several Canadian families who argued that the government should pay for their children's A.B.A. therapy because it is medically necessary. Michelle Dawson, an autistic woman in Montreal, submitted testimony questioning the ethics of the therapy, which the Canadian Supreme Court cited in its ruling against the families in November.
Ms. Dawson's position infuriates many parents who are fighting their own battles to get governments and insurance companies to pay for the expensive therapy.
"I'm afraid of this movement," said Kit Weintraub, the mother of two autistic children in Madison, Wis.
Ms. Weintraub's son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from "The Lord of the Rings."
"I worry about when he gets into high school, somebody doesn't want to date him or be his friend," she said. "It's no fun being different."
The dispute extends even to the basic terminology of autism.
"I would appreciate it, if I end up in your article, if you describe me as 'an autistic' or 'an autistic person,' versus the 'person with...,' " Ms. Dawson wrote in an e-mail message. "Just like you would feel odd if people said you were a 'person with femaleness.' "
Ms. Weintraub insists on the opposite. "My children have autism, they are not 'autistics,' " she wrote in her own widely circulated essay, "A Mother's Perspective." "It is no more normal to be autistic than it is to have spina bifida."
Terry Walker, 37, who has Asperger's syndrome, said he was not opposed to the concept of a cure for autism but he suggested that there was a pragmatic reason to look for other options.
"I don't think it's going to be easy to find," Mr. Walker said. "That's why I opt for changing the world around me; I think that does more long-term good."
Correction Appended
BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.
"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."
From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.
"People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."
That, at least, was what happened to these students at mainstream schools before they found refuge here.
But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to "act autistic" and also how to get by in a world where it is not.
Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest. This year's class includes specialists on supervolcanoes and medieval weaponry.
"Look at Jack," Justin pointed out. "He doesn't even need a map. He's like a living map."
The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger's - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.
It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition. But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children. Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.
The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed. Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away. Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.
Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to "defend the dignity of autistic citizens." The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year.
"We need acceptance about who we are and the way we are," said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. "That means you have to get out of the cure mind-set."
A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.
The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness. Some worry that in addition to troublesome interventions, the ultimate cure will be a genetic test to prevent autistic children from being born.
That would be a loss, they say, not just for social tolerance but because autistics, with their obsessive attention to detail and eccentric perspective, can provide valuable insight and innovation. The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic.
"What they're saying is their goal is to create a world that has no people like us in it," said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay "Don't Mourn for Us" serves as a touchstone for a fledgling movement.
At this year's "Autreat," an annual spring gathering of autistics, attendees compared themselves to gay rights activists, or the deaf who prefer sign language over surgery that might allow them to hear. Some discussed plans to be more openly autistic in public, rather than take the usual elaborate measures to fit in. Others vowed to create more autistic-friendly events and spaces.
Autreat participants, for instance, can wear color-coded badges that indicate whether they are willing to be approached for conversation. Common autistic mannerisms, like exceedingly literal conversation and hand-flapping, are to be expected. Common sources of autistic irritation, like casual hugs and fluorescent lighting, are not.
For many parents, however, the autistic self-advocacy movement often sounds like a threat to the brighter future they envision for their children. In recent months, the long-simmering argument has erupted into an online brawl over the most humane way to handle an often crippling condition.
On e-mail lists frequented by autistics, some parents are derided as "curebies" and portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating. Parents argue that their antagonists are showing a typical autistic lack of empathy by suggesting that they should not try to help their children. It is only those whose diagnosis describes them as "high functioning" or having Asperger's syndrome, they say, who are opposed to a cure.
"If those who raise their opposition to the so-called oppression of the autistic would simply substitute their usage of 'autism or autistic' with 'Asperger's,' their arguments might make some sense," Lenny Schafer, publisher of the widely circulated Schafer Autism Report, wrote in a recent e-mail message. "But I intend to cure, fix, repair, change over etc. my son and others like him of his profound and typical disabling autism into something better. Let us regain our common sense."
But the autistic activists say it is not so easy to distinguish between high and low functioning, and their ranks include both.
In an effort to refute parental skeptics, the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments. None of them are fully toilet-trained, one of them cannot speak, and they have all injured themselves on multiple occasions, they wrote: "We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic."
The touchiest area of dispute is over Applied Behavior Analysis, or A.B.A., the therapy that many parents say is the only way their children were able to learn to make eye contact, talk and get through the day without throwing tantrums. Some autistic adults, including some who have had the therapy, say that at its best it trains children to repress their natural form of expression and at its worst borders on being abusive. If an autistic child who screams every time he is taken to the supermarket is trained not to, for example, he may still be experiencing pain from the fluorescent lights and crush of strangers.
"Behaviors are so often attempts to communicate," said Jane Meyerding, an autistic woman who has a clerical job at the University of Washington and is a frequent contributor to the Autistic Advocacy e-mail discussion list. "When you snuff out the behaviors you snuff out the attempts to communicate."
Perhaps the most public conflict between parents and adult autistics came in a lawsuit brought by several Canadian families who argued that the government should pay for their children's A.B.A. therapy because it is medically necessary. Michelle Dawson, an autistic woman in Montreal, submitted testimony questioning the ethics of the therapy, which the Canadian Supreme Court cited in its ruling against the families in November.
Ms. Dawson's position infuriates many parents who are fighting their own battles to get governments and insurance companies to pay for the expensive therapy.
"I'm afraid of this movement," said Kit Weintraub, the mother of two autistic children in Madison, Wis.
Ms. Weintraub's son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from "The Lord of the Rings."
"I worry about when he gets into high school, somebody doesn't want to date him or be his friend," she said. "It's no fun being different."
The dispute extends even to the basic terminology of autism.
"I would appreciate it, if I end up in your article, if you describe me as 'an autistic' or 'an autistic person,' versus the 'person with...,' " Ms. Dawson wrote in an e-mail message. "Just like you would feel odd if people said you were a 'person with femaleness.' "
Ms. Weintraub insists on the opposite. "My children have autism, they are not 'autistics,' " she wrote in her own widely circulated essay, "A Mother's Perspective." "It is no more normal to be autistic than it is to have spina bifida."
Terry Walker, 37, who has Asperger's syndrome, said he was not opposed to the concept of a cure for autism but he suggested that there was a pragmatic reason to look for other options.
"I don't think it's going to be easy to find," Mr. Walker said. "That's why I opt for changing the world around me; I think that does more long-term good."
Wednesday, March 5, 2008
Resource Fair - Tuesday, March 11
LAWRENCE PUBLIC SCHOOLS
SPECIAL EDUCATION
FAMILY RESOURCE FAIR
SPECIAL EDUCATION
FAMILY RESOURCE FAIR
You Are Cordially Invited to Attend
Our First Annual Resource Fair
Tuesday, March 11, 2008 • 7:00 PM - 9:00 PM
Lawrence Middle School • 195 Broadway, Lawrence
Local organizations and community agencies will provide
valuable information regarding recreational services including
camps, after-school programs, athletic opportunities and respite programs
for students with disabilities and their families.
Refreshments will be served.
To RSVP by phone, please contact
Rosanne Gromadski-Bogard at (516) 812-7505.
Please mail RSVP form to: Rosanne Gromadski-Bogard, Lawrence School District, Pupil Personnel
Services, 195 Broadway, Lawrence, New York 11559
PARENT’S NAME:
STUDENT’S NAME:
SCHOOL:
HOME ADDRESS:
PHONE #: E-MAIL:
The 1st Annual
LEARNING
CAN BE FUN!
Research study looking for teen participants
Does Your Teenager or Adolescent Have Autism, Asperger’s Syndrome, or PDD-NOS?
You may be eligible to participate in a research study being conducted by researchers at the North-Shore-LIJ Center for Autism about adolescence. Topics will include:
• PUBERTY AND HYGIENE
• GROWING UP
• SEXUAL FEELINGS
• SOCIAL AND RELATIONSHIP SKILLS
• APPROPRIATE BEHAVIOR
• PERSONAL SAFETY
The purpose of this study to learn whether a 10-week parent group education
program is helpful for parents to learn about sexuality/growing up issues that are
relevant for youth with autism spectrum disorders, and how to teach these subjects
to their children.
Participation in this study involves:
• A comprehensive diagnostic evaluation for your child
• Cognitive assessment for your child
• A 10-week parent education and skill building group including
completion of sets of questionnaires
There is no cost to participate. You will receive compensation for
completion of three (3) assessment sessions.
For more information about this project, please contact:
Georgianna Reilly, Research Assistant, at (516) 802-8686 or GReilly@nshs.edu
You may be eligible to participate in a research study being conducted by researchers at the North-Shore-LIJ Center for Autism about adolescence. Topics will include:
• PUBERTY AND HYGIENE
• GROWING UP
• SEXUAL FEELINGS
• SOCIAL AND RELATIONSHIP SKILLS
• APPROPRIATE BEHAVIOR
• PERSONAL SAFETY
The purpose of this study to learn whether a 10-week parent group education
program is helpful for parents to learn about sexuality/growing up issues that are
relevant for youth with autism spectrum disorders, and how to teach these subjects
to their children.
Participation in this study involves:
• A comprehensive diagnostic evaluation for your child
• Cognitive assessment for your child
• A 10-week parent education and skill building group including
completion of sets of questionnaires
There is no cost to participate. You will receive compensation for
completion of three (3) assessment sessions.
For more information about this project, please contact:
Georgianna Reilly, Research Assistant, at (516) 802-8686 or GReilly@nshs.edu
Tuesday, March 4, 2008
Journal SLEEP: Methylphenidate can have sleep benefits in adults with ADHD
Public release date: 1-Mar-2008
Contact: Jim Arcurijarcuri@aasmnet.org 708-492-0930
American Academy of Sleep Medicine
Journal SLEEP: Methylphenidate can have sleep benefits in adults with ADHD
WESTCHESTER, Ill. – Treatment with methylphenidate (MPH) appears to have beneficial effects on sleep parameters in adults with ADHD, including increased sleep efficiency and a feeling of improved restorative value of sleep, according to a study published in the March 1 issue of the journal SLEEP.
The study, authored by Esther Sobanski, MD, of the Central Institute of Mental Health in Mannheim, Germany, focused on 34 non-medicated patients with ADHD, of whom 24 were without current psychiatric disorders, and 34 control subjects without current psychiatric disorders or psychotropic medication. Compared to the control group, all subjects in the ADHD sample displayed reduced sleep efficiency, with longer sleep onset latency and more nocturnal awakenings. They had altered sleep architecture, with a higher percentage of stage 1 and reduced percentage of REM sleep. Patients also showed a trend toward the reduced total REM density and elevated percentage of wakefulness after sleep onset.
According to Dr. Sobanski, this study showed that objective and subjective sleep problems in adults with ADHD are identical with sleep problems in children with ADHD, including longer sleep latencies, more nocturnal activity, reduced sleep efficiency, more nocturnal awakenings and slightly decreased REM activity during sleep, although the clinical significance of the last findings remains to be clarified.
Dr. Sobanski added that the effects of MPH on sleep in adults with ADHD have never been shown before, and that this study demonstrated that it has beneficial effects on several sleep parameters in addition to the positive effects on daytime functioning.
“Under treatment with MPH, patients reported improved evening mood, less psychosomatic symptoms while falling asleep, reduced sleep latency, and fewer nocturnal awakenings during the night spent in our sleep laboratory,” said Dr. Sobanski. “For the two weeks at home preceding their polysomnographic investigation, patients reported significantly better restorative value of sleep and a trend for less nocturnal awakenings compared to baseline.”
MPH is a prescription stimulant commonly used to treat ADHD. It is also one of the primary drugs used to treat the daytime drowsiness symptoms of narcolepsy and chronic fatigue syndrome.
A medication can provide much needed relief for someone with a severe sleep problem. This can promote good health and an overall sense of well being. But there is also a level of risk involved with the use of any medication. Many people will have some side effects.
Keep in mind that the same drug can affect people in different ways. A medication that helps someone else may not work for you. Your doctor can determine if a medication is the best treatment for your sleep problem. Never take a medication without the approval of your doctor.
It is recommended that adults get between seven and eight hours of nightly sleep.
The American Academy of Sleep Medicine (AASM) offers the following tips on how to get a good night’s sleep:
· Follow a consistent bedtime routine.
· Establish a relaxing setting at bedtime.
· Get a full night’s sleep every night.
· Avoid foods or drinks that contain caffeine, as well as any medicine that has a stimulant, prior to bedtime.
· Do not bring your worries to bed with you.
· Do not go to bed hungry, but don’t eat a big meal before bedtime either.
· Avoid any rigorous exercise within six hours of your bedtime.
· Make your bedroom quiet, dark and a little bit cool.
· Get up at the same time every morning.
###
Those who suspect that they might be suffering from a sleep disorder are encouraged to consult with their primary care physician or a sleep specialist.
SLEEP is the official journal of the Associated Professional Sleep Societies, LLC, a joint venture of the AASM and the Sleep Research Society.
SleepEducation.com, a patient education Web site created by the AASM, provides information about various sleep disorders, the forms of treatment available, recent news on the topic of sleep, sleep studies that have been conducted and a listing of sleep facilities.
For a copy of this article, entitled, “Sleep in Adults with Attention Deficit Hyperactivity Disorder (ADHD) Before and During Treatment with Methylphenidate: A Controlled Polysomnographic Study”, or to arrange an interview with an AASM spokesperson regarding this study, please contact Jim Arcuri, public relations coordinator, at (708)492-0930, ext. 9317, or jarcuri@aasmnet.org.
Contact: Jim Arcurijarcuri@aasmnet.org 708-492-0930
American Academy of Sleep Medicine
Journal SLEEP: Methylphenidate can have sleep benefits in adults with ADHD
WESTCHESTER, Ill. – Treatment with methylphenidate (MPH) appears to have beneficial effects on sleep parameters in adults with ADHD, including increased sleep efficiency and a feeling of improved restorative value of sleep, according to a study published in the March 1 issue of the journal SLEEP.
The study, authored by Esther Sobanski, MD, of the Central Institute of Mental Health in Mannheim, Germany, focused on 34 non-medicated patients with ADHD, of whom 24 were without current psychiatric disorders, and 34 control subjects without current psychiatric disorders or psychotropic medication. Compared to the control group, all subjects in the ADHD sample displayed reduced sleep efficiency, with longer sleep onset latency and more nocturnal awakenings. They had altered sleep architecture, with a higher percentage of stage 1 and reduced percentage of REM sleep. Patients also showed a trend toward the reduced total REM density and elevated percentage of wakefulness after sleep onset.
According to Dr. Sobanski, this study showed that objective and subjective sleep problems in adults with ADHD are identical with sleep problems in children with ADHD, including longer sleep latencies, more nocturnal activity, reduced sleep efficiency, more nocturnal awakenings and slightly decreased REM activity during sleep, although the clinical significance of the last findings remains to be clarified.
Dr. Sobanski added that the effects of MPH on sleep in adults with ADHD have never been shown before, and that this study demonstrated that it has beneficial effects on several sleep parameters in addition to the positive effects on daytime functioning.
“Under treatment with MPH, patients reported improved evening mood, less psychosomatic symptoms while falling asleep, reduced sleep latency, and fewer nocturnal awakenings during the night spent in our sleep laboratory,” said Dr. Sobanski. “For the two weeks at home preceding their polysomnographic investigation, patients reported significantly better restorative value of sleep and a trend for less nocturnal awakenings compared to baseline.”
MPH is a prescription stimulant commonly used to treat ADHD. It is also one of the primary drugs used to treat the daytime drowsiness symptoms of narcolepsy and chronic fatigue syndrome.
A medication can provide much needed relief for someone with a severe sleep problem. This can promote good health and an overall sense of well being. But there is also a level of risk involved with the use of any medication. Many people will have some side effects.
Keep in mind that the same drug can affect people in different ways. A medication that helps someone else may not work for you. Your doctor can determine if a medication is the best treatment for your sleep problem. Never take a medication without the approval of your doctor.
It is recommended that adults get between seven and eight hours of nightly sleep.
The American Academy of Sleep Medicine (AASM) offers the following tips on how to get a good night’s sleep:
· Follow a consistent bedtime routine.
· Establish a relaxing setting at bedtime.
· Get a full night’s sleep every night.
· Avoid foods or drinks that contain caffeine, as well as any medicine that has a stimulant, prior to bedtime.
· Do not bring your worries to bed with you.
· Do not go to bed hungry, but don’t eat a big meal before bedtime either.
· Avoid any rigorous exercise within six hours of your bedtime.
· Make your bedroom quiet, dark and a little bit cool.
· Get up at the same time every morning.
###
Those who suspect that they might be suffering from a sleep disorder are encouraged to consult with their primary care physician or a sleep specialist.
SLEEP is the official journal of the Associated Professional Sleep Societies, LLC, a joint venture of the AASM and the Sleep Research Society.
SleepEducation.com, a patient education Web site created by the AASM, provides information about various sleep disorders, the forms of treatment available, recent news on the topic of sleep, sleep studies that have been conducted and a listing of sleep facilities.
For a copy of this article, entitled, “Sleep in Adults with Attention Deficit Hyperactivity Disorder (ADHD) Before and During Treatment with Methylphenidate: A Controlled Polysomnographic Study”, or to arrange an interview with an AASM spokesperson regarding this study, please contact Jim Arcuri, public relations coordinator, at (708)492-0930, ext. 9317, or jarcuri@aasmnet.org.
ABILIFY approved for acute treatment of bipolar I disorder in patients 10 to 17 years old
Public release date: 29-Feb-2008
Contact: Debra Kaufmanndebra.kaufmann@otsuka.com 240-683-3568
Otsuka America Pharmaceutical, Inc.
ABILIFY approved for acute treatment of bipolar I disorder in patients 10 to 17 years old
Otsuka-sponsored study evaluated use of ABILIFY for the acute treatment of manic and mixed episodes associated with bipolar I disorder in pediatric patients 10 to 17 years of age
TOKYO, JAPAN & PRINCETON, NEW JERSEY, FEBRUARY 29 -- Otsuka Pharmaceutical Co., Ltd. and Bristol-Myers Squibb Company (NYSE: BMY) announced today that the U.S. Food and Drug Administration (FDA) approved the supplemental New Drug Application for ABILIFY® (aripiprazole) for the acute treatment of manic and mixed episodes associated with Bipolar I Disorder, with or without psychotic features in pediatric patients (10 to 17 years old). ABILIFY has been approved for the acute and maintenance treatment of manic and mixed episodes associated with Bipolar I Disorder with or without psychotic features in adults since September 2004 and March 2005, respectively.
“Pediatric bipolar illness is a serious condition,” said Christoph Correll, M.D., Medical Director, Recognition and Prevention Program, The Zucker Hillside Hospital and Assistant Professor of Psychiatry and Behavioral Sciences, Albert Einstein College of Medicine, Glen Oaks, New York. “The availability of an additional treatment option that can help guide decisions in managing Bipolar I Disorder in children and adolescents is welcome news.”
The approval is based on results from a four-week, multicenter, randomized, double-blind, placebo-controlled study in pediatric patients (10 to 17 years old) with Bipolar I Disorder that demonstrated efficacy with ABILIFY compared to placebo on the primary efficacy endpoint, mean change from baseline to Week 4 on the Young-Mania Rating Scale (Y-MRS) Total Score.
“We are pleased that the FDA has approved ABILIFY to treat pediatric patients aged 10 to 17 years suffering from Bipolar I Disorder,” said Taro Iwamoto, Ph.D., Chief Executive Officer, President and Chief Operating Officer, Otsuka Pharmaceutical Development and Commercialization, Inc. “The approval of this new indication for ABILIFY provides clinicians with expanded treatment options that can help address the therapeutic needs of this population.”
“We are committed to developing innovative new medicines to their fullest potential,” said Elliott Sigal, M.D., Ph.D., Executive Vice President, Chief Scientific Officer and President, Research and Development, Bristol-Myers Squibb. “Expanding the clinical use of an important therapy such as ABILIFY gives pediatric patients with Bipolar I Disorder and their caregivers a new treatment option in their fight against this serious disease.”
Clinical Trial Design and Findings
These findings are from a four-week, multicenter, randomized, double-blind, placebo-controlled study, which evaluated the efficacy and safety of ABILIFY in 296 pediatric patients (10 to 17 years old) with a DSM-IV diagnosis of Bipolar I Disorder, manic or mixed episodes, with or without psychotic features. Diagnosis was made by a trained child and adolescent psychiatrist and confirmed by a separate diagnostic interview. This study was conducted on an outpatient basis with the possibility of inpatient hospitalization, as needed. This clinical trial was sponsored by Otsuka Pharmaceutical Co., Ltd. and its U.S. subsidiary, Otsuka Pharmaceutical Development & Commercialization, Inc. (Princeton, NJ) with enrollment at 54 U.S. centers.
After a screening period of up to four weeks, pediatric patients (10 to 17 years old) who scored greater than or equal to 20 on the Y-MRS* were randomly assigned to receive one of two fixed doses of ABILIFY [10 mg/day (n=98) or 30 mg/day (n=99)] or placebo (n=99). ABILIFY was initiated at a starting dose of 2 mg/day and titrated to the target dose of 10 mg/day or 30 mg/day.
The primary efficacy endpoint was the mean change in the Y-MRS Total Score from baseline to Week 4. Safety evaluations included incidence of adverse reactions, discontinuation due to adverse reactions, laboratory measures and body weight.
For the primary endpoint, both doses of ABILIFY demonstrated statistically significant improvement in symptoms when compared to placebo (p-value less than 0.0001) as measured by the mean change from baseline to endpoint (Week 4) on the Y-MRS Total Score. The efficacy of ABILIFY for the maintenance treatment of Bipolar I Disorder in the pediatric population has not been evaluated.
Approximately 80% of patients completed the four-week study (ABILIFY 10 mg: 86%; ABILIFY 30 mg: 78%; placebo: 77%). There was a low rate of discontinuation due to adverse reactions at Week 4 (ABILIFY: 7%; placebo: 2%).
During the study, the most commonly observed adverse reactions (greater than or equal to 5% in combined ABILIFY groups and at least twice the rate of placebo) associated with ABILIFY were: somnolence (ABILIFY: 23%; placebo: 3%), extrapyramidal disorder (ABILIFY: 20%; placebo: 3%), fatigue (ABILIFY: 11%; placebo: 4%), nausea (ABILIFY: 11%; placebo: 4%), akathisia (ABILIFY: 10%; placebo: 2%), blurred vision (ABILIFY: 8%; placebo: 0%), salivary hypersecretion (ABILIFY: 6%; placebo: 0%) and dizziness (ABILIFY: 5%; placebo: 1%). Four common adverse reactions had a possible dose-response relationship at Week 4: extrapyramidal disorder (ABILIFY 10 mg: 12.2%; ABILIFY 30 mg: 27.3%; placebo: 3.1%), somnolence (ABILIFY 10 mg: 19.4%; ABILIFY 30 mg: 26.3%; placebo: 3.1%), akathisia (ABILIFY 10 mg: 8.2%; ABILIFY 30 mg: 11.1%; placebo: 2.1%) and salivary hypersecretion (ABILIFY 10 mg: 3.1%; ABILIFY 30 mg: 8.1%; placebo: 0%). Children and adolescents might be more sensitive than adults in developing antipsychotic-related adverse events.(1)
In the study, weight gain greater than or equal to 7% change from baseline was seen in 3.2%, 9.4% and 3.3% for the ABILIFY 10 mg, ABILIFY 30 mg and placebo groups, respectively. The mean change from baseline to Week 4 in body weight was 0.6 kilograms (kg) for ABILIFY 10 mg, 0.9 kg for ABILIFY 30 mg and 0.5 kg for placebo.
In this study, ABILIFY demonstrated no clinically important differences on prolactin and the following metabolic parameters: triglyceride, HDL-C, LDL-C and total cholesterol. All treatment groups showed a reduction in mean serum prolactin levels at last visit relative to baseline.
###
About ABILIFY® (aripiprazole)
The first and only available dopamine partial agonist, ABILIFY is indicated for the treatment of acute manic or mixed episodes associated with Bipolar I Disorder in adults and pediatric patients (10 to 17 years old). ABILIFY® (aripiprazole) Injection is indicated for the treatment of adults with agitation associated with Bipolar I Disorder, manic or mixed.
Initially approved in November 2002, over 14.9 million prescriptions have been written for ABILIFY in the U.S.(2) through December 2007.
ABILIFY is available by prescription only. ABILIFY Tablets should be taken once daily with or without food and are available in 2 mg, 5 mg, 10 mg, 15 mg, 20 mg and 30 mg strengths. ABILIFY® DISCMELT(TM) (aripiprazole) Orally Disintegrating Tablets are available in 10 mg and 15 mg strengths. In addition, ABILIFY is available in a 1 mg/mL nonrefrigerated Oral Solution and as a single-dose, ready-to-use solution for intramuscular injection 7.5 mg/mL. In adult patients, the recommended ABILIFY® (aripiprazole) Oral target dose is 15 mg/day to 30 mg/day in Bipolar I Disorder. In pediatric patients (10 to 17 years old) with Bipolar I Disorder, the recommended ABILIFY Oral target dose is 10 mg/day (with a starting dose of 2 mg/day which was titrated to 5 mg/day after 2 days and to the target dose of 10 mg/day after 2 additional days). In adult patients with agitation associated with bipolar mania, the ABILIFY Injection initial dose is 9.75 mg/1.3 mL. If ongoing ABILIFY therapy is clinically indicated, oral ABILIFY in a range of 10 mg/day to 30 mg/day should replace ABILIFY Injection as soon as possible. The safety of doses of ABILIFY Oral or ABILIFY Injection above 30 mg/day has not been evaluated in clinical trials.
IMPORTANT SAFETY INFORMATION and INDICATIONS for ABILIFY
INDICATIONS:
· ABILIFY is indicated for acute and maintenance treatment of adults with manic or mixed episodes associated with Bipolar I Disorder with or without psychotic features
· ABILIFY is indicated for acute treatment of pediatric patients (10 to 17 years old) with manic or mixed episodes associated with Bipolar I Disorder with or without psychotic features
· ABILIFY Injection is indicated for the treatment of adults with agitation associated with Bipolar I Disorder, manic or mixed.
IMPORTANT SAFETY INFORMATION:
Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk (1.6 to 1.7 times) of death compared to placebo (4.5% vs 2.6%, respectively). ABILIFY is not approved for the treatment of patients with dementia-related psychosis (see Boxed WARNING).
Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of adjunctive ABILIFY or another antidepressant in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increased risk of suicidality in adults beyond age 24. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on antidepressant therapy should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised for the need for close observation and communication with the prescriber. ABILIFY is not approved for use in pediatric patients with depression (See Boxed WARNING).
Contraindications: Known hypersensitivity reaction to ABILIFY. Reactions have ranged from pruritus/urticaria to anaphylaxis.
Cerebrovascular adverse reactions (eg, stroke, transient ischemic attack), including fatalities, have been reported at an increased incidence in clinical trials of elderly patients with dementia-related psychosis treated with ABILIFY
Neuroleptic malignant syndrome (NMS)–As with all antipsychotic medications, a rare and potentially fatal condition known as NMS has been reported with ABILIFY. NMS can cause hyperpyrexia, muscle rigidity, diaphoresis, tachycardia, irregular pulse or blood pressure, cardiac dysrhythmia, and altered mental status. If signs and symptoms appear, immediate discontinuation is recommended
Tardive dyskinesia (TD)–The risk of developing TD and the potential for it to become irreversible may increase as the duration of treatment and the total cumulative dose increase. Prescribing should be consistent with the need to minimize TD. If signs and symptoms appear, discontinuation should be considered since TD may remit, partially or completely
Hyperglycemia and diabetes mellitus–Hyperglycemia, in some cases associated with ketoacidosis, coma, or death, has been reported in patients treated with atypical antipsychotics including ABILIFY. Patients with diabetes should be monitored for worsening of glucose control; those with risk factors for diabetes should undergo baseline and periodic fasting blood glucose testing. Patients who develop symptoms of hyperglycemia should also undergo fasting blood glucose testing. There have been few reports of hyperglycemia with ABILIFY
ABILIFY may be associated with orthostatic hypotension and should be used with caution in patients with known cardiovascular disease, cerebrovascular disease, or conditions which would predispose them to hypotension.
As with other antipsychotic drugs, ABILIFY should be used with caution in patients with a history of seizures or with conditions that lower the seizure threshold.
Like other antipsychotics, ABILIFY may have the potential to impair judgment, thinking, or motor skills. Patients should not drive or operate hazardous machinery until they are certain ABILIFY does not affect them adversely.
Disruption of the body’s ability to reduce core body temperature has been attributed to antipsychotics. Appropriate care is advised for patients who may exercise strenuously, be exposed to extreme heat, receive concomitant medication with anticholinergic activity, or be subject to dehydration.
Esophageal dysmotility and aspiration have been associated with antipsychotic drug use, including ABILIFY; use caution in patients at risk for aspiration pneumonia.
The possibility of a suicide attempt is inherent in psychotic illnesses, bipolar disorder, and major depressive disorder, and close supervision of high-risk patients should accompany drug therapy.
Physicians should advise patients to avoid alcohol while taking ABILIFY.
Strong CYP3A4 or CYP2D6 inhibitors increase ABILIFY drug concentrations when used concomitantly.
CYP3A4 inducers decrease ABILIFY drug concentrations when used concomitantly.
Commonly observed adverse reactions (greater than or equal to 5% incidence and at least twice the rate of placebo for ABILIFY vs placebo, respectively):
· Adult patients with bipolar mania: constipation (13% vs 6%), akathisia (15% vs 3%), sedation (8% vs 3%), tremor (7% vs 3%), restlessness (6% vs 3%), and extrapyramidal disorder (5% vs 2%)
· Pediatric patients (10 to 17 years) with Bipolar I Disorder: somnolence (23% vs 3%), extrapyramidal disorder (20% vs 3%), fatigue (11% vs 4%), nausea (11% vs 4%), akathisia (10% vs 2%), blurred vision (8% vs 0%), salivary hypersecretion (6% vs 0%), and dizziness (5% vs 1%)
· Adult patients with agitation associated with bipolar mania: nausea (9% vs 3%)
Please see FULL PRESCRIBING INFORMATION, including Boxed WARNINGS, for ABILIFY.
About Otsuka Pharmaceutical Co., Ltd. and Bristol-Myers Squibb
Otsuka Pharmaceutical Co., Ltd. and Bristol-Myers Squibb are collaborative partners in the development and commercialization of ABILIFY in the United States and major European countries.
ABILIFY was discovered by Otsuka Pharmaceutical Co., Ltd. Founded in 1964, Otsuka Pharmaceutical Co., Ltd. is a global healthcare company with the corporate philosophy: “Otsuka - people creating new products for better health worldwide.” Otsuka researches, develops, manufactures and markets innovative and original products, with a focus on pharmaceutical products for the treatment of diseases and consumer products for the maintenance of everyday health. Otsuka is committed to being a corporation that creates global value, adhering to the high ethical standards required of a company involved in human health and life, maintaining a dynamic corporate culture, and working in harmony with local communities and the natural environment. The Otsuka Pharmaceutical Group comprises
99 companies and employs approximately 31,000 people in 18 countries and regions worldwide. Otsuka and its consolidated subsidiaries earned U.S. $7.2 billion in annual revenues in fiscal 2006.
Bristol-Myers Squibb is a global biopharmaceutical and related healthcare products company whose mission is to extend and enhance human life.
For more information and FULL PRESCRIBING INFORMATION, including Boxed WARNINGS, visit: www.abilify.com
Visit Otsuka Pharmaceutical Co., Ltd. at: www.otsuka-global.com
Visit Bristol-Myers Squibb at: www.bms.com
* The Y-MRS is a standard measure that is an 11-item rating scale used by healthcare providers to assess the scope and severity of manic symptoms.(1) Y-MRS Total Scores range from 0 (no manic symptoms) to 60 (severe mania).(2) *(1) Young RC, Biggs JT, Ziegler VE, Meyer DA. A rating scale for mania: reliability, validity, and sensitivity. Br J Psychiatry. 1978; 133:429-435. *(2) Rush AJ, et al. Handbook of Psychiatric Measures. Washington, DC: American Psychiatric Association;2000.
References
(1) Kumra S, Oberstar JV, Sikich L, Findling RL, McClellan JM, Vinogradov S, Schulz SC. Efficacy and Tolerability of Second-Generation Antipsychotics in Children and Adolescents With Schizophrenia. Schizophrenia Bulletin. Published online October 8, 2007. (2) IMS Auditrac NGPS: ABILIFY total monthly retail prescriptions: Data accessed December 2007.
February 2008 0308N-0662
Additional Contacts
Hideki Shirai Otsuka Pharmaceutical Co., Ltd siraih@otsuka.jp
Sonia Choi/Communications Bristol-Myers Squibb Company Office: +1-609-252-5132 sonia.choi@bms.com
John Elicker/Investor Relations Bristol-Myers Squibb Company Office: +1-212-546-3775 john.elicker@bms.com
Contact: Debra Kaufmanndebra.kaufmann@otsuka.com 240-683-3568
Otsuka America Pharmaceutical, Inc.
ABILIFY approved for acute treatment of bipolar I disorder in patients 10 to 17 years old
Otsuka-sponsored study evaluated use of ABILIFY for the acute treatment of manic and mixed episodes associated with bipolar I disorder in pediatric patients 10 to 17 years of age
TOKYO, JAPAN & PRINCETON, NEW JERSEY, FEBRUARY 29 -- Otsuka Pharmaceutical Co., Ltd. and Bristol-Myers Squibb Company (NYSE: BMY) announced today that the U.S. Food and Drug Administration (FDA) approved the supplemental New Drug Application for ABILIFY® (aripiprazole) for the acute treatment of manic and mixed episodes associated with Bipolar I Disorder, with or without psychotic features in pediatric patients (10 to 17 years old). ABILIFY has been approved for the acute and maintenance treatment of manic and mixed episodes associated with Bipolar I Disorder with or without psychotic features in adults since September 2004 and March 2005, respectively.
“Pediatric bipolar illness is a serious condition,” said Christoph Correll, M.D., Medical Director, Recognition and Prevention Program, The Zucker Hillside Hospital and Assistant Professor of Psychiatry and Behavioral Sciences, Albert Einstein College of Medicine, Glen Oaks, New York. “The availability of an additional treatment option that can help guide decisions in managing Bipolar I Disorder in children and adolescents is welcome news.”
The approval is based on results from a four-week, multicenter, randomized, double-blind, placebo-controlled study in pediatric patients (10 to 17 years old) with Bipolar I Disorder that demonstrated efficacy with ABILIFY compared to placebo on the primary efficacy endpoint, mean change from baseline to Week 4 on the Young-Mania Rating Scale (Y-MRS) Total Score.
“We are pleased that the FDA has approved ABILIFY to treat pediatric patients aged 10 to 17 years suffering from Bipolar I Disorder,” said Taro Iwamoto, Ph.D., Chief Executive Officer, President and Chief Operating Officer, Otsuka Pharmaceutical Development and Commercialization, Inc. “The approval of this new indication for ABILIFY provides clinicians with expanded treatment options that can help address the therapeutic needs of this population.”
“We are committed to developing innovative new medicines to their fullest potential,” said Elliott Sigal, M.D., Ph.D., Executive Vice President, Chief Scientific Officer and President, Research and Development, Bristol-Myers Squibb. “Expanding the clinical use of an important therapy such as ABILIFY gives pediatric patients with Bipolar I Disorder and their caregivers a new treatment option in their fight against this serious disease.”
Clinical Trial Design and Findings
These findings are from a four-week, multicenter, randomized, double-blind, placebo-controlled study, which evaluated the efficacy and safety of ABILIFY in 296 pediatric patients (10 to 17 years old) with a DSM-IV diagnosis of Bipolar I Disorder, manic or mixed episodes, with or without psychotic features. Diagnosis was made by a trained child and adolescent psychiatrist and confirmed by a separate diagnostic interview. This study was conducted on an outpatient basis with the possibility of inpatient hospitalization, as needed. This clinical trial was sponsored by Otsuka Pharmaceutical Co., Ltd. and its U.S. subsidiary, Otsuka Pharmaceutical Development & Commercialization, Inc. (Princeton, NJ) with enrollment at 54 U.S. centers.
After a screening period of up to four weeks, pediatric patients (10 to 17 years old) who scored greater than or equal to 20 on the Y-MRS* were randomly assigned to receive one of two fixed doses of ABILIFY [10 mg/day (n=98) or 30 mg/day (n=99)] or placebo (n=99). ABILIFY was initiated at a starting dose of 2 mg/day and titrated to the target dose of 10 mg/day or 30 mg/day.
The primary efficacy endpoint was the mean change in the Y-MRS Total Score from baseline to Week 4. Safety evaluations included incidence of adverse reactions, discontinuation due to adverse reactions, laboratory measures and body weight.
For the primary endpoint, both doses of ABILIFY demonstrated statistically significant improvement in symptoms when compared to placebo (p-value less than 0.0001) as measured by the mean change from baseline to endpoint (Week 4) on the Y-MRS Total Score. The efficacy of ABILIFY for the maintenance treatment of Bipolar I Disorder in the pediatric population has not been evaluated.
Approximately 80% of patients completed the four-week study (ABILIFY 10 mg: 86%; ABILIFY 30 mg: 78%; placebo: 77%). There was a low rate of discontinuation due to adverse reactions at Week 4 (ABILIFY: 7%; placebo: 2%).
During the study, the most commonly observed adverse reactions (greater than or equal to 5% in combined ABILIFY groups and at least twice the rate of placebo) associated with ABILIFY were: somnolence (ABILIFY: 23%; placebo: 3%), extrapyramidal disorder (ABILIFY: 20%; placebo: 3%), fatigue (ABILIFY: 11%; placebo: 4%), nausea (ABILIFY: 11%; placebo: 4%), akathisia (ABILIFY: 10%; placebo: 2%), blurred vision (ABILIFY: 8%; placebo: 0%), salivary hypersecretion (ABILIFY: 6%; placebo: 0%) and dizziness (ABILIFY: 5%; placebo: 1%). Four common adverse reactions had a possible dose-response relationship at Week 4: extrapyramidal disorder (ABILIFY 10 mg: 12.2%; ABILIFY 30 mg: 27.3%; placebo: 3.1%), somnolence (ABILIFY 10 mg: 19.4%; ABILIFY 30 mg: 26.3%; placebo: 3.1%), akathisia (ABILIFY 10 mg: 8.2%; ABILIFY 30 mg: 11.1%; placebo: 2.1%) and salivary hypersecretion (ABILIFY 10 mg: 3.1%; ABILIFY 30 mg: 8.1%; placebo: 0%). Children and adolescents might be more sensitive than adults in developing antipsychotic-related adverse events.(1)
In the study, weight gain greater than or equal to 7% change from baseline was seen in 3.2%, 9.4% and 3.3% for the ABILIFY 10 mg, ABILIFY 30 mg and placebo groups, respectively. The mean change from baseline to Week 4 in body weight was 0.6 kilograms (kg) for ABILIFY 10 mg, 0.9 kg for ABILIFY 30 mg and 0.5 kg for placebo.
In this study, ABILIFY demonstrated no clinically important differences on prolactin and the following metabolic parameters: triglyceride, HDL-C, LDL-C and total cholesterol. All treatment groups showed a reduction in mean serum prolactin levels at last visit relative to baseline.
###
About ABILIFY® (aripiprazole)
The first and only available dopamine partial agonist, ABILIFY is indicated for the treatment of acute manic or mixed episodes associated with Bipolar I Disorder in adults and pediatric patients (10 to 17 years old). ABILIFY® (aripiprazole) Injection is indicated for the treatment of adults with agitation associated with Bipolar I Disorder, manic or mixed.
Initially approved in November 2002, over 14.9 million prescriptions have been written for ABILIFY in the U.S.(2) through December 2007.
ABILIFY is available by prescription only. ABILIFY Tablets should be taken once daily with or without food and are available in 2 mg, 5 mg, 10 mg, 15 mg, 20 mg and 30 mg strengths. ABILIFY® DISCMELT(TM) (aripiprazole) Orally Disintegrating Tablets are available in 10 mg and 15 mg strengths. In addition, ABILIFY is available in a 1 mg/mL nonrefrigerated Oral Solution and as a single-dose, ready-to-use solution for intramuscular injection 7.5 mg/mL. In adult patients, the recommended ABILIFY® (aripiprazole) Oral target dose is 15 mg/day to 30 mg/day in Bipolar I Disorder. In pediatric patients (10 to 17 years old) with Bipolar I Disorder, the recommended ABILIFY Oral target dose is 10 mg/day (with a starting dose of 2 mg/day which was titrated to 5 mg/day after 2 days and to the target dose of 10 mg/day after 2 additional days). In adult patients with agitation associated with bipolar mania, the ABILIFY Injection initial dose is 9.75 mg/1.3 mL. If ongoing ABILIFY therapy is clinically indicated, oral ABILIFY in a range of 10 mg/day to 30 mg/day should replace ABILIFY Injection as soon as possible. The safety of doses of ABILIFY Oral or ABILIFY Injection above 30 mg/day has not been evaluated in clinical trials.
IMPORTANT SAFETY INFORMATION and INDICATIONS for ABILIFY
INDICATIONS:
· ABILIFY is indicated for acute and maintenance treatment of adults with manic or mixed episodes associated with Bipolar I Disorder with or without psychotic features
· ABILIFY is indicated for acute treatment of pediatric patients (10 to 17 years old) with manic or mixed episodes associated with Bipolar I Disorder with or without psychotic features
· ABILIFY Injection is indicated for the treatment of adults with agitation associated with Bipolar I Disorder, manic or mixed.
IMPORTANT SAFETY INFORMATION:
Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk (1.6 to 1.7 times) of death compared to placebo (4.5% vs 2.6%, respectively). ABILIFY is not approved for the treatment of patients with dementia-related psychosis (see Boxed WARNING).
Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of adjunctive ABILIFY or another antidepressant in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increased risk of suicidality in adults beyond age 24. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on antidepressant therapy should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised for the need for close observation and communication with the prescriber. ABILIFY is not approved for use in pediatric patients with depression (See Boxed WARNING).
Contraindications: Known hypersensitivity reaction to ABILIFY. Reactions have ranged from pruritus/urticaria to anaphylaxis.
Cerebrovascular adverse reactions (eg, stroke, transient ischemic attack), including fatalities, have been reported at an increased incidence in clinical trials of elderly patients with dementia-related psychosis treated with ABILIFY
Neuroleptic malignant syndrome (NMS)–As with all antipsychotic medications, a rare and potentially fatal condition known as NMS has been reported with ABILIFY. NMS can cause hyperpyrexia, muscle rigidity, diaphoresis, tachycardia, irregular pulse or blood pressure, cardiac dysrhythmia, and altered mental status. If signs and symptoms appear, immediate discontinuation is recommended
Tardive dyskinesia (TD)–The risk of developing TD and the potential for it to become irreversible may increase as the duration of treatment and the total cumulative dose increase. Prescribing should be consistent with the need to minimize TD. If signs and symptoms appear, discontinuation should be considered since TD may remit, partially or completely
Hyperglycemia and diabetes mellitus–Hyperglycemia, in some cases associated with ketoacidosis, coma, or death, has been reported in patients treated with atypical antipsychotics including ABILIFY. Patients with diabetes should be monitored for worsening of glucose control; those with risk factors for diabetes should undergo baseline and periodic fasting blood glucose testing. Patients who develop symptoms of hyperglycemia should also undergo fasting blood glucose testing. There have been few reports of hyperglycemia with ABILIFY
ABILIFY may be associated with orthostatic hypotension and should be used with caution in patients with known cardiovascular disease, cerebrovascular disease, or conditions which would predispose them to hypotension.
As with other antipsychotic drugs, ABILIFY should be used with caution in patients with a history of seizures or with conditions that lower the seizure threshold.
Like other antipsychotics, ABILIFY may have the potential to impair judgment, thinking, or motor skills. Patients should not drive or operate hazardous machinery until they are certain ABILIFY does not affect them adversely.
Disruption of the body’s ability to reduce core body temperature has been attributed to antipsychotics. Appropriate care is advised for patients who may exercise strenuously, be exposed to extreme heat, receive concomitant medication with anticholinergic activity, or be subject to dehydration.
Esophageal dysmotility and aspiration have been associated with antipsychotic drug use, including ABILIFY; use caution in patients at risk for aspiration pneumonia.
The possibility of a suicide attempt is inherent in psychotic illnesses, bipolar disorder, and major depressive disorder, and close supervision of high-risk patients should accompany drug therapy.
Physicians should advise patients to avoid alcohol while taking ABILIFY.
Strong CYP3A4 or CYP2D6 inhibitors increase ABILIFY drug concentrations when used concomitantly.
CYP3A4 inducers decrease ABILIFY drug concentrations when used concomitantly.
Commonly observed adverse reactions (greater than or equal to 5% incidence and at least twice the rate of placebo for ABILIFY vs placebo, respectively):
· Adult patients with bipolar mania: constipation (13% vs 6%), akathisia (15% vs 3%), sedation (8% vs 3%), tremor (7% vs 3%), restlessness (6% vs 3%), and extrapyramidal disorder (5% vs 2%)
· Pediatric patients (10 to 17 years) with Bipolar I Disorder: somnolence (23% vs 3%), extrapyramidal disorder (20% vs 3%), fatigue (11% vs 4%), nausea (11% vs 4%), akathisia (10% vs 2%), blurred vision (8% vs 0%), salivary hypersecretion (6% vs 0%), and dizziness (5% vs 1%)
· Adult patients with agitation associated with bipolar mania: nausea (9% vs 3%)
Please see FULL PRESCRIBING INFORMATION, including Boxed WARNINGS, for ABILIFY.
About Otsuka Pharmaceutical Co., Ltd. and Bristol-Myers Squibb
Otsuka Pharmaceutical Co., Ltd. and Bristol-Myers Squibb are collaborative partners in the development and commercialization of ABILIFY in the United States and major European countries.
ABILIFY was discovered by Otsuka Pharmaceutical Co., Ltd. Founded in 1964, Otsuka Pharmaceutical Co., Ltd. is a global healthcare company with the corporate philosophy: “Otsuka - people creating new products for better health worldwide.” Otsuka researches, develops, manufactures and markets innovative and original products, with a focus on pharmaceutical products for the treatment of diseases and consumer products for the maintenance of everyday health. Otsuka is committed to being a corporation that creates global value, adhering to the high ethical standards required of a company involved in human health and life, maintaining a dynamic corporate culture, and working in harmony with local communities and the natural environment. The Otsuka Pharmaceutical Group comprises
99 companies and employs approximately 31,000 people in 18 countries and regions worldwide. Otsuka and its consolidated subsidiaries earned U.S. $7.2 billion in annual revenues in fiscal 2006.
Bristol-Myers Squibb is a global biopharmaceutical and related healthcare products company whose mission is to extend and enhance human life.
For more information and FULL PRESCRIBING INFORMATION, including Boxed WARNINGS, visit: www.abilify.com
Visit Otsuka Pharmaceutical Co., Ltd. at: www.otsuka-global.com
Visit Bristol-Myers Squibb at: www.bms.com
* The Y-MRS is a standard measure that is an 11-item rating scale used by healthcare providers to assess the scope and severity of manic symptoms.(1) Y-MRS Total Scores range from 0 (no manic symptoms) to 60 (severe mania).(2) *(1) Young RC, Biggs JT, Ziegler VE, Meyer DA. A rating scale for mania: reliability, validity, and sensitivity. Br J Psychiatry. 1978; 133:429-435. *(2) Rush AJ, et al. Handbook of Psychiatric Measures. Washington, DC: American Psychiatric Association;2000.
References
(1) Kumra S, Oberstar JV, Sikich L, Findling RL, McClellan JM, Vinogradov S, Schulz SC. Efficacy and Tolerability of Second-Generation Antipsychotics in Children and Adolescents With Schizophrenia. Schizophrenia Bulletin. Published online October 8, 2007. (2) IMS Auditrac NGPS: ABILIFY total monthly retail prescriptions: Data accessed December 2007.
February 2008 0308N-0662
Additional Contacts
Hideki Shirai Otsuka Pharmaceutical Co., Ltd siraih@otsuka.jp
Sonia Choi/Communications Bristol-Myers Squibb Company Office: +1-609-252-5132 sonia.choi@bms.com
John Elicker/Investor Relations Bristol-Myers Squibb Company Office: +1-212-546-3775 john.elicker@bms.com
Workshop Wednesday March 5th - Davis Correction Method for DYSLEXIA,L/D & ADD/ADHD
Davis Dyslexia Association - Israel"THE CENTER FOR SELF-CHANGE"
INVITES YOU TO A FREE LECTURE
Presenting The Davis Correction Method for DYSLEXIA,L/D & ADD/ADHD PRACTICAL TOOLS FOR FUNCTIONING WITH ADD/ADHD DYSLEXIA AND LEARNING CHALLENGES in English & Hebrew.
LET ME SHOW YOU HOW YOUR CHILD /ADULT CAN SUCCEED!(DYSLEXIA AD/HD or ADD) L/D & and other related conditions can change even themost lovable child into an "impossible" child in the home and school environment; And our program GURANTEES NO Medication!Come and See HOW ...................................WHO SHOULD ATTEND: Educators, Special Ed Teachers, Guidance Counselors, Parents of children with these symptoms, Adults with these symptomsTOPICS TO BE DISCUSSED:How we can achieve Focusing & Listening Skills
1) How your child can achieve his/her true potential within the Yeshiva Environment.
2) The reduction of symptoms in ADD, ADHD and L/D. 3) Improvement in reading, math and learning abilities. 4) Gaining a higher threshold for confusion. 5) Improvement in self- confidence and self-esteem
Wednesday March 5th, 2008 @ 7:30 PM
Where: 596 Derby Avenue/Woodmere For more information and to Confirm attendance: Call 516-343-8331
For additional information visit her website at: www.dyslexia.org.il
INVITES YOU TO A FREE LECTURE
Presenting The Davis Correction Method for DYSLEXIA,L/D & ADD/ADHD PRACTICAL TOOLS FOR FUNCTIONING WITH ADD/ADHD DYSLEXIA AND LEARNING CHALLENGES in English & Hebrew.
LET ME SHOW YOU HOW YOUR CHILD /ADULT CAN SUCCEED!(DYSLEXIA AD/HD or ADD) L/D & and other related conditions can change even themost lovable child into an "impossible" child in the home and school environment; And our program GURANTEES NO Medication!Come and See HOW ...................................WHO SHOULD ATTEND: Educators, Special Ed Teachers, Guidance Counselors, Parents of children with these symptoms, Adults with these symptomsTOPICS TO BE DISCUSSED:How we can achieve Focusing & Listening Skills
1) How your child can achieve his/her true potential within the Yeshiva Environment.
2) The reduction of symptoms in ADD, ADHD and L/D. 3) Improvement in reading, math and learning abilities. 4) Gaining a higher threshold for confusion. 5) Improvement in self- confidence and self-esteem
Wednesday March 5th, 2008 @ 7:30 PM
Where: 596 Derby Avenue/Woodmere For more information and to Confirm attendance: Call 516-343-8331
For additional information visit her website at: www.dyslexia.org.il
Monday, March 3, 2008
ADVOCACY AND THE LAW What You NEED to Know! Workshop March 4th , 7pm-9pm
This presentation will be extremely informative, it is appropriate for Parents, Educators, Administrators, Attorneys and anyone with an interest in Special Education!Regina Brandow Esq., of Berger & Brandow, LLPwww.bergerandbrandow.com
…Will help us to understand Special Education Law and Regulations and…What we need to know to be sure our students are getting an appropriate educational program.Where: Long Island Parent Center887 Kellum Street, Lindenhurst(631) 603-3300 (Workshop is FREE of charge, please call to reserve your space)When: Tuesday, March 4th , 7pm-9pmLong Island Parent Technical Assistance Centeris funded through NYSED/VESID and hosted by the Just Kids Early Childhood Learning CenterLIPTAC provides training and support to families and professionals regarding the provision of appropriate services to children with special needs
…Will help us to understand Special Education Law and Regulations and…What we need to know to be sure our students are getting an appropriate educational program.Where: Long Island Parent Center887 Kellum Street, Lindenhurst(631) 603-3300 (Workshop is FREE of charge, please call to reserve your space)When: Tuesday, March 4th , 7pm-9pmLong Island Parent Technical Assistance Centeris funded through NYSED/VESID and hosted by the Just Kids Early Childhood Learning CenterLIPTAC provides training and support to families and professionals regarding the provision of appropriate services to children with special needs
Government Concede Vaccine-Autism Connection in Federal Court
Julie Cauich> Government Concede Vaccine-Autism Connection in Federal Court> The US Government has finally conceded that at least some cases of > autism can be caused by the mercury in vaccines. Despite what the > media says, some vaccines STILL contain mercury at toxic levels > ( for example, the FLU vaccine). This article is written by David > Kirby, who wrote the book "Evidence of Harm" about the politics > behind mercury and vaccines. There is a link at the bottom to the > courts full conclusion.>> I also highly recommend the reading of the book,> The Virus and the Vaccine: The True Story of a Cancer-Causing Monkey > Virus, Contaminated Polio Vaccine, and the Millions of Americans > Exposed (Hardcover)> by Debbie Bookchin (Author), Jim Schumacher (Author)> Be sure you have a strong stomach before reading.>> Laura - Mom to William, diagnosed with ADHD, Asperger's, asthma, > allergies, chronic gastrointestinal issues, chronic sinusitis, > chronic immune dysfunction, specific learning disabilities, visual > disabilities(newly diagnosed) and more! Waiting on test results for > mercury and other heavy metal poisoning.>>> After years of insisting there is no evidence to link vaccines with > the onset of autism spectrum disorder (ASD), the US government has > quietly conceded a vaccine-autism case in the Court of Federal Claims.> The unprecedented concession was filed on November 9, and sealed to > protect the plaintiff's identify. It was obtained through > individuals unrelated to the case.>> The claim, one of 4,900 autism cases currently pending in Federal > "Vaccine Court," was conceded by US Assistant Attorney General Peter > Keisler and other Justice Department officials, on behalf of the > Department of Health and Human Services, the "defendant" in all > Vaccine Court cases.> The child's claim against the government -- that mercury-containing > vaccines were the cause of her autism -- was supposed to be one of > three "test cases" for the thimerosal-autism theory currently under > consideration by a three-member panel of Special Masters, the > presiding justices in Federal Claims Court.> Keisler wrote that medical personnel at the HHS Division of Vaccine > Injury Compensation (DVIC) had reviewed the case and "concluded that > compensation is appropriate."> The doctors conceded that the child was healthy and developing > normally until her 18-month well-baby visit, when she received > vaccinations against nine different diseases all at once (two > contained thimerosal).> Days later, the girl began spiraling downward into a cascade of > illnesses and setbacks that, within months, presented as symptoms of > autism, including: No response to verbal direction; loss of language > skills; no eye contact; loss of "relatedness;" insomnia; incessant > screaming; arching; and "watching the florescent lights repeatedly > during examination."> Seven months after vaccination, the patient was diagnosed by Dr. > Andrew Zimmerman, a leading neurologist at the Kennedy Krieger > Children's Hospital Neurology Clinic, with "regressive > encephalopathy (brain disease) with features consistent with > autistic spectrum disorder, following normal development." The girl > also met the Diagnostic and Statistical Manual for Mental Disorders > (DSM-IV) official criteria for autism.> In its written concession, the government said the child had a pre- > existing mitochondrial disorder that was "aggravated" by her shots, > and which ultimately resulted in an ASD diagnosis.> "The vaccinations received on July 19, 2000, significantly > aggravated an underlying mitochondrial disorder," the concession > says, "which predisposed her to deficits in cellular energy > metabolism, and manifested as a regressive encephalopathy with > features of ASD."> This statement is good news for the girl and her family, who will > now be compensated for the lifetime of care she will require. But > its implications for the larger vaccine-autism debate, and for > public health policy in general, are not as certain.> In fact, the government's concession seems to raise more questions > than it answers.> 1) Is there a connection between vaccines, mitochondrial disorders > and a diagnosis of autism, at least in some cases?> Mitochondria, you may recall from biology class, are the little > powerhouses within cells that convert food into electrical energy, > partly through a complex process called "oxidative phosphorylation." > If this process is impaired, mitochondrial disorder will ensue.> The child in this case had several markers for Mt disease, which was > confirmed by muscle biopsy. Mt disease is often marked by lethargy, > poor muscle tone, poor food digestion and bowel problems, something > found in many children diagnosed with autism.> But mitochondrial disorders are rare in the general population, > affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 > cases filed in Vaccine Court, this case should be the one and only, > extremely rare instance of Mt disease in all the autism proceedings.> But it is not.> Mitochondrial disorders are now thought to be the most common > disease associated with ASD. Some journal articles and other > analyses have estimated that 10% to 20% of all autism cases may > involve mitochondrial disorders, which would make them one thousand > times more common among people with ASD than the general population.> Another article, published in the Journal of Child Neurology and co- > authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger > Institute autism patients studied had one marker for impaired > oxidative phosphorylation, and 47% had a second marker.> The authors -- who reported on a case-study of the same autism claim > conceded in Vaccine Court -- noted that "children who have > (mitochondrial-related) dysfunctional cellular energy metabolism > might be more prone to undergo autistic regression between 18 and 30 > months of age if they also have infections or immunizations at the > same time."> An interesting aspect of Mt disease in autism is that, with ASD, the > mitochondrial disease seems to be milder than in "classic" cases of > Mt disorder. In fact, classic Mt disease is almost always inherited, > either passed down by the mother through mitochondrial DNA, or by > both parents through nuclear DNA.> In autism-related Mt disease, however, the disorder is not typically > found in other family members, and instead appears to be largely of > the sporadic variety, which may now account for 75% of all > mitochondrial disorders.> Meanwhile, an informal survey of seven families of children with > cases currently pending in Vaccine Court revealed that all seven > showed markers for mitochondrial dysfunction, dating back to their > earliest medical tests. The facts in all seven claims mirror the > case just conceded by the government: Normal development followed by > vaccination, immediate illness, and rapid decline culminating in an > autism diagnosis.> 2) With 4,900 cases pending, and more coming, will the government > concede those with underlying Mt disease -- and if it not, will the > Court award compensation?> The Court will soon begin processing the 4900 cases pending before > it. What if 10% to 20% of them can demonstrate the same Mt disease > and same set of facts as those in the conceded case? Would the > government be obliged to concede 500, or even 1,000 cases? What > impact would that have on public opinion? And is there enough money > currently in the vaccine injury fund to cover so many settlements?> When asked for a comment last week about the court settlement, a > spokesman for HHS furnished the following written statement:>> "DVIC has reviewed the scientific information concerning the > allegation that vaccines cause autism and has found no credible > evidence to support the claim. Accordingly, in every case under the > Vaccine Act, DVIC has maintained the position that vaccines do not > cause autism, and has never concluded in any case that autism was > caused by vaccination.">> 3) If the government is claiming that vaccines did not "cause" > autism, but instead aggravated a condition to "manifest" as autism, > isn't that a very fine distinction?> For most affected families, such linguistic gymnastics is not so > important. And even if a vaccine injury "manifested" as autism in > only one case, isn't that still a significant development worthy of > informing the public?> On the other hand, perhaps what the government is claiming is that > vaccination resulted in the symptoms of autism, but not in an > actual, factually correct diagnosis of autism itself.> 4) If the government is claiming that this child does NOT have > autism, then how many other children might also have something else > that merely "mimics" autism?> Is it possible that 10%-20% of the cases that we now label as > "autism," are not autism at all, but rather some previously > undefined "look-alike" syndrome that merely presents as "features" > of autism?> This question gets to the heart of what autism actually is. The > disorder is defined solely as a collection of features, nothing > more. If you have the features (and the diagnosis), you have the > disorder. The underlying biology is the great unknown.> But let's say the government does determine that these kids don't > have actual "autism" (something I speculated on HuffPost a year > ago). Then shouldn't the Feds go back and test all people with ASD > for impaired oxidative phosphorylation, perhaps reclassifying many > of them?> If so, will we then see "autism" cases drop by tens, if not hundreds > of thousands of people? Will there be a corresponding ascension of a > newly described disorder, perhaps something like "Vaccine Aggravated > Mitochondrial Disease with Features of ASD?"> And if this child was technically "misdiagnosed" with DSM-IV autism > by Dr Zimmerman, how does he feel about HHS doctors issuing a second > opinion re-diagnosis of his patient, whom they presumably had > neither met nor examined? (Zimmerman declined an interview).> And along those lines, aren't Bush administration officials somewhat > wary of making long-distance, retroactive diagnoses from Washington, > given that the Terry Schiavo incident has not yet faded from > national memory?> 5) Was this child's Mt disease caused by a genetic mutation, as the > government implies, and wouldn't that have manifested as "ASD > features" anyway?> In the concession, the government notes that the patient had a > "single nucleotide change" in the mitochondrial DNA gene T2387C, > implying that this was the underlying cause of her manifested > "features" of autism.> While it's true that some inherited forms of Mt disease can manifest > as developmental delays, (and even ASD in the form of Rhett > Syndrome) these forms are linked to identified genetic mutations, of > which T2387C is not involved. In fact little, if anything, is known > about the function of this particular gene.> What's more, there is no evidence that this girl, prior to > vaccination, suffered from any kind of "disorder" at all- genetic, > mitochondrial or otherwise. Some forms of Mt disease are so mild > that the person is unaware of being affected. This perfectly > developing girl may have had Mt disorder at the time of vaccination, > but nobody detected, or even suspected it.> And, there is no evidence to suggest that this girl would have > regressed into symptoms consistent with a DSM-IV autism diagnosis > without her vaccinations. If there was such evidence, then why on > earth would these extremely well-funded government attorneys > compensate this alleged injury in Vaccine Court? Why wouldn't they > move to dismiss, or at least fight the case at trial?> 6) What are the implications for research?> The concession raises at least two critical research questions: What > are the causes of Mt dysfunction; and how could vaccines aggravate > that dysfunction to the point of "autistic features?"> While some Mt disorders are clearly inherited, the "sporadic" form > is thought to account for 75% of all cases, according to the United > Mitochondrial Disease Foundation. So what causes sporadic Mt > disease? "Medicines or other toxins," says the Cleveland Clinic, a > leading authority on the subject.> Use of the AIDS drug AZT, for example, can cause Mt disorders by > deleting large segments of mitochondrial DNA. If that is the case, > might other exposures to drugs or toxins (i.e., thimerosal, mercury > in fish, air pollution, pesticides, live viruses) also cause > sporadic Mt disease in certain subsets of children, through similar > genotoxic mechanisms?> Among the prime cellular targets of mercury are mitochondria, and > thimerosal-induced cell death has been associated with the > depolarization of mitochondrial membrane, according to the > International Journal of Molecular Medicine among several others. > (Coincidently, the first case of Mt disease was diagnosed in 1959, > just 15 years after the first autism case was named, and two decades > after thimerosal's introduction as a vaccine preservative.)> Regardless of its cause, shouldn't HHS sponsor research into Mt > disease and the biological mechanisms by which vaccines could > aggravate the disorder? We still do not know what it was, exactly, > about this girl's vaccines that aggravated her condition. Was it the > thimerosal? The three live viruses? The two attenuated viruses? > Other ingredients like aluminum? A combination of the above?> And of course, if vaccine injuries can aggravate Mt disease to the > point of manifesting as autism features, then what other underlying > disorders or conditions (genetic, autoimmune, allergic, etc.) might > also be aggravated to the same extent?> 7) What are the implications for medicine and public health?> Should the government develop and approve new treatments for > "aggravated mitochondrial disease with ASD features?" Interestingly, > many of the treatments currently deployed in Mt disease (i.e., > coenzyme Q10, vitamin B-12, lipoic acid, biotin, dietary changes, > etc.) are part of the alternative treatment regimen that many > parents use on their children with ASD.> And, if a significant minority of autism cases can be linked to Mt > disease and vaccines, shouldn't these products one day carry an FDA > Black Box warning label, and shouldn't children with Mt disorders be > exempt from mandatory immunization?> 8) What are the implications for the vaccine-autism debate?> It's too early to tell. But this concession could conceivably make > it more difficult for some officials to continue insisting there is > "absolutely no link" between vaccines and autism.> It also puts the Federal Government's Vaccine Court defense strategy > somewhat into jeopardy. DOJ lawyers and witnesses have argued that > autism is genetic, with no evidence to support an environmental > component. And, they insist, it's simply impossible to construct a > chain of events linking immunizations to the disorder.> Government officials may need to rethink their legal strategy, as > well as their public relations campaigns, given their own slightly > contradictory concession in this case.> 9) What is the bottom line here?> The public, (including world leaders) will demand to know what is > going on inside the US Federal health establishment. Yes, as of now, > n=1, a solitary vaccine-autism concession. But what if n=10% or 20%? > Who will pay to clean up that mess?> The significance of this concession will unfortunately be fought > over in the usual, vitriolic way -- and I fully expect to be slammed > for even raising these questions. Despite that, the language of this > concession cannot be changed, or swept away.> Its key words are "aggravated" and "manifested." Without the > aggravation of the vaccines, it is uncertain that the manifestation > would have occurred at all.> When a kid with peanut allergy eats a peanut and dies, we don't say > "his underlying metabolic condition was significantly aggravated to > the extent of manifesting as an anaphylactic shock with features of > death."> No, we say the peanut killed the poor boy. Remove the peanut from > the equation, and he would still be with us today.> Many people look forward to hearing more from HHS officials about > why they are settling this claim. But whatever their explanation, > they cannot change the fundamental facts of this extraordinary case:> The United State government is compensating at least one child for > vaccine injuries that resulted in a diagnosis of autism.> And that is big news, no matter how you want to say it.> NOTE: Full text of the government's statement is posted here.> David Kirby is the author of "Evidence of Harm - Mercury in Vaccines > and the Autism Epidemic, A Medical Controversy" (St. Martins Press > 2005> Laura Cox is offline Add to Laura Cox's Reputation Report Post IP > Edit/Delete Message
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