By MARIA CHENG, AP Medical Writer Maria Cheng, Ap Medical Writer – Mon May 24, 9:30 pm ET
LONDON – The doctor whose research linking autism and the vaccine for measles, mumps and rubella influenced millions of parents to refuse the shot for their children was banned Monday from practicing medicine in his native Britain.
Dr. Andrew Wakefield's 1998 study was discredited — but vaccination rates have never fully recovered and he continues to enjoy a vocal following, helped in the U.S. by endorsements from celebrities like Jim Carrey and Jenny McCarthy
Wakefield was the first researcher to publish a peer-reviewed study suggesting a connection between autism and the vaccine for measles, mumps and rubella. Legions of parents abandoned the vaccine, leading to a resurgence of measles in Western countries where it had been mostly stamped out. There are outbreaks across Europe every year and sporadic outbreaks in the U.S.
"That is Andrew Wakefield's legacy," said Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia. "The hospitalizations and deaths of children from measles who could have easily avoided the disease."
Wakefield's discredited theories had a tremendous impact in the U.S., Offit said, adding: "He gave heft to the notion that vaccines in general cause autism."
In Britain, Wakefield's research led to a huge decline in the number of children receiving the MMR vaccine: from 95 percent in 1995 — enough to prevent measles outbreaks — to 50 percent in parts of London in the early 2000s. Rates have begun to recover, though not enough to prevent outbreaks. In 2006, a 13-year-old boy became the first person to die from measles in Britain in 14 years.
"The false suggestion of a link between autism and the MMR vaccine has done untold damage to the UK vaccination program," said Terence Stephenson, president of the Royal College of Paediatrics and Child Health. "Overwhelming scientific evidence shows that it is safe."
On Monday, Britain's General Medical Council, which licenses and oversees doctors, found Wakefield guilty of serious professional misconduct and stripped him of the right to practice medicine in the U.K. Wakefield said he plans to appeal the ruling, which takes effect within 28 days.
The council was acting on a finding in January that Wakefield and two other doctors showed a "callous disregard" for the children in their study, published in 1998 in the medical journal Lancet. The medical body said Wakefield took blood samples from children at his son's birthday party, paying them 5 pounds (about $7.20) each and later joked about the incident.
The study has since been widely rejected. From 1998-2004, studies in journals including the Lancet, the New England Journal of Medicine, Pediatrics and BMJ published papers showing no link between autism and the measles vaccine.
Wakefield moved to the U.S. in 2004 and set up an autism research center in Austin, Texas, where he gained a wide following despite being unlicensed as a doctor there and facing skepticism from the medical community. He quit earlier this year.
Offit said he doubted Britain's decision to strip the 53-year-old Wakefield of his medical license would convince many parents that vaccines are safe.
"He's become almost like a Christ-like figure and it doesn't matter that science has proven him wrong," Offit said. "He is a hero for parents who think no one else is listening to them."
Wakefield told The Associated Press Monday's decision was a sad day for British medicine. "None of this alters the fact that vaccines can cause autism," he said.
"These parents are not going away; the children are not going to go away and I most certainly am not going away," he said on NBC's "Today Show."
Wakefield claimed the U.S. government has been settling cases of vaccine-induced autism since 1991.
However, two rulings by a special branch of the U.S. Court of Federal Claims in March and last year found no link between vaccines and autism. More than 5,500 claims have been filed by families seeking compensation for children they claim were hurt by the vaccine.
Wakefield has won support from parents suspicious of vaccines, including Hollywood celebrities.
McCarthy, who has an autistic son, issued a statement in February with then boyfriend Carrey asserting Wakefield was "being vilified through a well-orchestrated smear campaign."
"It is our most sincere belief that Dr. Wakefield and parents of children with autism around the world are being subjected to a remarkable media campaign engineered by vaccine manufacturers," the actors said.
McCarthy, whose best-seller "Louder Than Words" details her search for treatments for her son Evan, wrote the foreword for a new book by Wakefield about autism and vaccines.
In Monday's ruling, the medical council said Wakefield abused his position as a doctor and "brought the medical profession into disrepute."
At the time of his study, Wakefield was working as a gastroenterologist at London's Royal Free Hospital and did not have approval for the research. The study suggested autistic children had a bowel disease and raised the possibility of a link between autism and vaccines. He had also been paid to advise lawyers representing parents who believed their children had been hurt by the MMR vaccine.
Ten of the study's authors later renounced its conclusions and it was retracted by the Lancet in February.
At least a dozen British medical associations, including the Royal College of Physicians, the Medical Research Council and the Wellcome Trust have issued statements verifying the safety of the measles, mumps and rubella vaccine.
This verdict is not about (the measles) vaccine," said Adam Finn, a professor of pediatrics at the University of Bristol Medical School. "We all now know that the vaccine is remarkably safe and enormously effective... We badly need to put this right for the sake of our own children and children worldwide."
Monday, May 24, 2010
Friday, April 2, 2010
Autistic Kids At The Movies :Where Shhhh Is'nt Allowed
On April 10, thousands of children with autism will be able to do something that for many of them was impossible until recently: go to the movies. They'll see How to Train Your Dragon at one of 93 "sensory-friendly" screenings in 47 cities across 30 states. The lights will dim but remain on, the volume will be lowered, the movie will start promptly at 10 a.m. with no previews, families with special dietary needs will be allowed to bring snacks from home, and if the kids yell or even stroll around the theater, no one will complain.
April Autism Awareness Month marks the first anniversary of the Sensory Friendly Films program, a joint venture of AMC Entertainment and the Autism Society. Screenings of the G- or PG-rated movies, all newly released, are held once a month on a Saturday morning. Expansion to other cities is planned.
A regular at the screenings is Marianna Pollock of Virginia Beach, Va., and her 6-year-old son Xander. "We attempted a regular movie a few times," says Pollock. "We always ended up having to leave within the first 15 minutes because Xander gets so excited that he flaps and makes noise. It was very stressful."
Xander's behavior at the movies is typical for many people with autism, which the Centers for Disease Control and Prevention estimates affects 1 in 110 children. "One of the challenges for people with an autism spectrum disorder is coping with strong sensory stimulation," says psychologist Sandra Harris, who runs the Douglass Developmental Disabilities Center at Rutgers University in New Brunswick, N.J. "They may be overwhelmed by loud sounds, bright lights, crowds of people. A person of any age with an ASD may flap his or her hands, twist her fingers, call out or rock when she is excited by an event such as a movie."
Silvia Townsend of San Diego took her 12-year-old son Bailey to a regular movie. Once. "It was horrible," says Townsend. "He was terrified when the lights turned off. And when the loud music started, he was covering his ears and started screaming in obvious pain." Now Bailey loves attending sensory-friendly films.
So does 18-year-old Matthew Kay, who has severe autism and attends the films with other young adults and the staff of the group home he lives in near San Diego. The last time Matthew was able to attend a regular movie, he was 4.
The idea for the films first came about in 2007 when Marianne Ross, of Elkridge, Md., took her then 7-year-old daughter Meaghan, who has autism, to see Hairspray. Ross purposely picked an early matinee, when there would be fewer people. "Meaghan loves Zac Efron, so when he came onscreen, she just danced, twirled, flapped her hands and jumped up and down." Several patrons complained, and the manager asked the Rosses to leave. "I was so frustrated, angry and upset," recalls Ross, "because Meaghan had been so happy. I thought, There's got to be a lot of children in the same situation."
The next day, Ross called her local AMC movie theater in Columbia, Md., and spoke to manager Dan Harris. She asked if he'd be willing to set up a special screening. Harris, who had never known anyone with autism, met with Ross, heard her suggestions and came up with some adaptations to make the screening more sensory-friendly to kids with the disorder.
Ross put the word out about the upcoming screening through her local Autism Society chapter. "We didn't know if we'd have an empty auditorium," says Harris. "We had 300 seats, and we had to turn people away. I knew we were on to something."
Harris held three more monthly screenings, then contacted AMC's national headquarters in Kansas City, Mo., where he spoke with community-relations manager Cindy Huffstickler. She thought it was a great idea and was surprised no one had thought of it before. Huffstickler then contacted the Autism Society's national headquarters, which got its chapters behind a few national test screenings that proved just as successful.
"Attending a film where you know everyone in the theater is either in the same situation as you or is at least informed that the 'Silence is golden' policy doesn't apply today takes the tension away," says Angela Vandersteen of Greenwood, Ind., who takes her 5-year-old son Ray to the screenings. When Marianne Ross takes Meaghan to the movies, she also takes along her 8-year-old son Gavin, who does not have autism; he has developed a network of friends who are siblings of autistic kids at the screenings.
Even families of children without autism but with other special needs, like those with physical disabilities, have started attending the screenings, citing the sense of acceptance they feel there.
"Our children are constantly under scrutiny," says Xander's mother Marianna. "They look normal, so people often think they're just misbehaving. It becomes exhausting trying to validate their right to be themselves. At a sensory-friendly movie, we as a family finally get to go to a movie and relax. Boy, does that feel wonderful."
April Autism Awareness Month marks the first anniversary of the Sensory Friendly Films program, a joint venture of AMC Entertainment and the Autism Society. Screenings of the G- or PG-rated movies, all newly released, are held once a month on a Saturday morning. Expansion to other cities is planned.
A regular at the screenings is Marianna Pollock of Virginia Beach, Va., and her 6-year-old son Xander. "We attempted a regular movie a few times," says Pollock. "We always ended up having to leave within the first 15 minutes because Xander gets so excited that he flaps and makes noise. It was very stressful."
Xander's behavior at the movies is typical for many people with autism, which the Centers for Disease Control and Prevention estimates affects 1 in 110 children. "One of the challenges for people with an autism spectrum disorder is coping with strong sensory stimulation," says psychologist Sandra Harris, who runs the Douglass Developmental Disabilities Center at Rutgers University in New Brunswick, N.J. "They may be overwhelmed by loud sounds, bright lights, crowds of people. A person of any age with an ASD may flap his or her hands, twist her fingers, call out or rock when she is excited by an event such as a movie."
Silvia Townsend of San Diego took her 12-year-old son Bailey to a regular movie. Once. "It was horrible," says Townsend. "He was terrified when the lights turned off. And when the loud music started, he was covering his ears and started screaming in obvious pain." Now Bailey loves attending sensory-friendly films.
So does 18-year-old Matthew Kay, who has severe autism and attends the films with other young adults and the staff of the group home he lives in near San Diego. The last time Matthew was able to attend a regular movie, he was 4.
The idea for the films first came about in 2007 when Marianne Ross, of Elkridge, Md., took her then 7-year-old daughter Meaghan, who has autism, to see Hairspray. Ross purposely picked an early matinee, when there would be fewer people. "Meaghan loves Zac Efron, so when he came onscreen, she just danced, twirled, flapped her hands and jumped up and down." Several patrons complained, and the manager asked the Rosses to leave. "I was so frustrated, angry and upset," recalls Ross, "because Meaghan had been so happy. I thought, There's got to be a lot of children in the same situation."
The next day, Ross called her local AMC movie theater in Columbia, Md., and spoke to manager Dan Harris. She asked if he'd be willing to set up a special screening. Harris, who had never known anyone with autism, met with Ross, heard her suggestions and came up with some adaptations to make the screening more sensory-friendly to kids with the disorder.
Ross put the word out about the upcoming screening through her local Autism Society chapter. "We didn't know if we'd have an empty auditorium," says Harris. "We had 300 seats, and we had to turn people away. I knew we were on to something."
Harris held three more monthly screenings, then contacted AMC's national headquarters in Kansas City, Mo., where he spoke with community-relations manager Cindy Huffstickler. She thought it was a great idea and was surprised no one had thought of it before. Huffstickler then contacted the Autism Society's national headquarters, which got its chapters behind a few national test screenings that proved just as successful.
"Attending a film where you know everyone in the theater is either in the same situation as you or is at least informed that the 'Silence is golden' policy doesn't apply today takes the tension away," says Angela Vandersteen of Greenwood, Ind., who takes her 5-year-old son Ray to the screenings. When Marianne Ross takes Meaghan to the movies, she also takes along her 8-year-old son Gavin, who does not have autism; he has developed a network of friends who are siblings of autistic kids at the screenings.
Even families of children without autism but with other special needs, like those with physical disabilities, have started attending the screenings, citing the sense of acceptance they feel there.
"Our children are constantly under scrutiny," says Xander's mother Marianna. "They look normal, so people often think they're just misbehaving. It becomes exhausting trying to validate their right to be themselves. At a sensory-friendly movie, we as a family finally get to go to a movie and relax. Boy, does that feel wonderful."
Wednesday, February 3, 2010
Medical journal retracts study linking autism to vaccine
(CNN) -- The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism.
The study subsequently had been discredited, and last week, the lead author, Dr. Andrew Wakefield, was found to have acted unethically in conducting the research.
The General Medical Council, which oversees doctors in Britain, said that "there was a biased selection of patients in The Lancet paper" and that his "conduct in this regard was dishonest and irresponsible."
The panel found that Wakefield subjected some children in the study to various invasive medical procedures such as colonoscopies and MRI scans. He also paid children at his son's birthday party to have blood drawn for research purposes, an act that "showed a callous disregard" for the "distress and pain" of the children, the panel said.
After the council's findings last week, The Lancet retracted the study and released this statement.
"It has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."
Dr. Richard Horton, editor of The Lancet, said he reviewed the General Medical Council report regarding Wakefield's conduct.
"It's the most appalling catalog and litany of some the most terrible behavior in any research and is therefore very clear that it has to be retracted," he said.
CNN was unable to speak to Wakefield, but in a statement he denied wrongdoing.
"The allegations against me and against my colleagues are both unfounded and unjust and I invite anyone to examine the contents of these proceedings and come to their own conclusion. In fact, the Lancet paper does not claim to confirm a link between the MMR vaccine and autism. Research into that possible connection is still going on."
The Centers for Disease Control and Prevention praised The Lancet's retraction, saying, "It builds on the overwhelming body of research by the world's leading scientists that concludes there is no link between MMR vaccine and autism. We want to remind parents that vaccines are very safe and effective and they save lives. Parents who have questions about the safety of vaccines should talk to their pediatrician or their child's health care provider."
Since its publication, Wakefield's study has attracted many critics who argued that the work had been so flawed, it should not be regarded as scientific.
Wakefield theorized that the measles vaccine caused gastrointestinal problems and that those GI problems led to autism. In his view, the virus used in the vaccine grew in the intestinal tract, leading the bowel to become porous because of inflammation. Then material seeped from the bowel into the blood, Wakefield's theory said, affecting the nervous system and causing autism.
But subsequent research has been unable to duplicate Wakefield's findings.
A September 2008 study replicated key parts of Wakefield's original paper and found no evidence that the vaccine had a connection to either autism or GI disorders. The study, conducted at Columbia University, Massachusetts General Hospital and the CDC, also found no relationship between the timing of the vaccine and children getting GI disorders or autism.
The Wakefield study has been a key piece of evidence cited by many parents who do not vaccinate their children because of autism fears.
"The story became credible because it was published in The Lancet," Alison Singer, president of the Autism Science Foundation, said Tuesday. "It was in The Lancet, and we really rely on these medical journals."
Singer, the mother of a child with autism, added, "That study did a lot of harm. People became afraid of vaccinations. This is the Wakefield legacy: this unscientifically grounded fear of vaccinations that result in children dying from vaccine-preventable diseases."
Retractions are rare in medical journals and usually occur as a result of fraud or plagiarism, said Marcia Angell, a former editor of The New England Journal of Medicine.
"It is a major event when there is a retraction like this," she said. "It sounds like there was a misleading design of the study ... patients not randomly chosen. There were ethical violations."
William Schaffner, professor and chairman of the department of preventive medicine at Vanderbilt University School of Medicine, described the journal's level of action as "unprecedented."
"Since Wakefield's study came out, some 20 other studies have come out, and each one of these studies, done by different researchers, in different populations and in different countries, has denied the associations between vaccines and autism," he said. "Scientifically, this story is over."
Schaffner added, "This series of events is damning and should refocus all of us in the field to find better methods of diagnosis and treatments."
The Lancet came under criticism for the initial publication of the paper 12 years ago.
"The mere publishing of this paper created something that will never fully go way: the false notion that MMR caused autism," said Dr. Paul Offit, author of "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," and the chief of division of infectious diseases at the Children's Hospital of Philadelphia.
The retraction did little to change the opinion of Rebecca Estepp, a spokeswoman for Talk About Curing Autism.
Estepp said her son has autism and bowel problems. She said she remains convinced that he had a vaccine reaction and that Wakefield's research helped doctors identify how to help her son.
"I guess the GMC can say whatever they want to say for the rest of their existence, but I know that my son got better because of Dr. Wakefield," she said.
Generation Rescue, an advocacy and support group founded by actress Jenny McCarthy, whose son has autism, expressed support for Wakefield. A co-founder of the group, JB Handley, called him "a courageous honest doctor who told an inconvenient truth." McCarthy is a high-profile proponent of the belief that childhood vaccinations may play a part in the condition.
Generation Rescue criticized the General Medical Council's judgment on Wakefield with this statement: "The sole purpose of the GMC's ruling this week is to try and quell the growing concern of parents that the expanding vaccine schedule and the remarkable rise in autism are correlated."
It also advised parents to do their own research before deciding to give their child the MMR vaccine.
Cases in which U.S. families have sued alleging a vaccine-autism link have had mixed outcomes.
In 2007, a U.S. federal program intended to compensate victims of injuries caused by vaccines concluded that a 9-year-old girl's underlying illness had predisposed her to symptoms of autism and was "significantly aggravated" by the vaccinations.
Two years later, three American families sought compensation from the Vaccine Injury Compensation Program, but the panel ruled that they had not presented sufficient evidence to prove that the vaccines caused autism in their children.
The study subsequently had been discredited, and last week, the lead author, Dr. Andrew Wakefield, was found to have acted unethically in conducting the research.
The General Medical Council, which oversees doctors in Britain, said that "there was a biased selection of patients in The Lancet paper" and that his "conduct in this regard was dishonest and irresponsible."
The panel found that Wakefield subjected some children in the study to various invasive medical procedures such as colonoscopies and MRI scans. He also paid children at his son's birthday party to have blood drawn for research purposes, an act that "showed a callous disregard" for the "distress and pain" of the children, the panel said.
After the council's findings last week, The Lancet retracted the study and released this statement.
"It has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."
Dr. Richard Horton, editor of The Lancet, said he reviewed the General Medical Council report regarding Wakefield's conduct.
"It's the most appalling catalog and litany of some the most terrible behavior in any research and is therefore very clear that it has to be retracted," he said.
CNN was unable to speak to Wakefield, but in a statement he denied wrongdoing.
"The allegations against me and against my colleagues are both unfounded and unjust and I invite anyone to examine the contents of these proceedings and come to their own conclusion. In fact, the Lancet paper does not claim to confirm a link between the MMR vaccine and autism. Research into that possible connection is still going on."
The Centers for Disease Control and Prevention praised The Lancet's retraction, saying, "It builds on the overwhelming body of research by the world's leading scientists that concludes there is no link between MMR vaccine and autism. We want to remind parents that vaccines are very safe and effective and they save lives. Parents who have questions about the safety of vaccines should talk to their pediatrician or their child's health care provider."
Since its publication, Wakefield's study has attracted many critics who argued that the work had been so flawed, it should not be regarded as scientific.
Wakefield theorized that the measles vaccine caused gastrointestinal problems and that those GI problems led to autism. In his view, the virus used in the vaccine grew in the intestinal tract, leading the bowel to become porous because of inflammation. Then material seeped from the bowel into the blood, Wakefield's theory said, affecting the nervous system and causing autism.
But subsequent research has been unable to duplicate Wakefield's findings.
A September 2008 study replicated key parts of Wakefield's original paper and found no evidence that the vaccine had a connection to either autism or GI disorders. The study, conducted at Columbia University, Massachusetts General Hospital and the CDC, also found no relationship between the timing of the vaccine and children getting GI disorders or autism.
The Wakefield study has been a key piece of evidence cited by many parents who do not vaccinate their children because of autism fears.
"The story became credible because it was published in The Lancet," Alison Singer, president of the Autism Science Foundation, said Tuesday. "It was in The Lancet, and we really rely on these medical journals."
Singer, the mother of a child with autism, added, "That study did a lot of harm. People became afraid of vaccinations. This is the Wakefield legacy: this unscientifically grounded fear of vaccinations that result in children dying from vaccine-preventable diseases."
Retractions are rare in medical journals and usually occur as a result of fraud or plagiarism, said Marcia Angell, a former editor of The New England Journal of Medicine.
"It is a major event when there is a retraction like this," she said. "It sounds like there was a misleading design of the study ... patients not randomly chosen. There were ethical violations."
William Schaffner, professor and chairman of the department of preventive medicine at Vanderbilt University School of Medicine, described the journal's level of action as "unprecedented."
"Since Wakefield's study came out, some 20 other studies have come out, and each one of these studies, done by different researchers, in different populations and in different countries, has denied the associations between vaccines and autism," he said. "Scientifically, this story is over."
Schaffner added, "This series of events is damning and should refocus all of us in the field to find better methods of diagnosis and treatments."
The Lancet came under criticism for the initial publication of the paper 12 years ago.
"The mere publishing of this paper created something that will never fully go way: the false notion that MMR caused autism," said Dr. Paul Offit, author of "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," and the chief of division of infectious diseases at the Children's Hospital of Philadelphia.
The retraction did little to change the opinion of Rebecca Estepp, a spokeswoman for Talk About Curing Autism.
Estepp said her son has autism and bowel problems. She said she remains convinced that he had a vaccine reaction and that Wakefield's research helped doctors identify how to help her son.
"I guess the GMC can say whatever they want to say for the rest of their existence, but I know that my son got better because of Dr. Wakefield," she said.
Generation Rescue, an advocacy and support group founded by actress Jenny McCarthy, whose son has autism, expressed support for Wakefield. A co-founder of the group, JB Handley, called him "a courageous honest doctor who told an inconvenient truth." McCarthy is a high-profile proponent of the belief that childhood vaccinations may play a part in the condition.
Generation Rescue criticized the General Medical Council's judgment on Wakefield with this statement: "The sole purpose of the GMC's ruling this week is to try and quell the growing concern of parents that the expanding vaccine schedule and the remarkable rise in autism are correlated."
It also advised parents to do their own research before deciding to give their child the MMR vaccine.
Cases in which U.S. families have sued alleging a vaccine-autism link have had mixed outcomes.
In 2007, a U.S. federal program intended to compensate victims of injuries caused by vaccines concluded that a 9-year-old girl's underlying illness had predisposed her to symptoms of autism and was "significantly aggravated" by the vaccinations.
Two years later, three American families sought compensation from the Vaccine Injury Compensation Program, but the panel ruled that they had not presented sufficient evidence to prove that the vaccines caused autism in their children.
Tuesday, January 26, 2010
Special, gifted
By Michael Tan
Philippine Daily Inquirer
First Posted 21:41:00 01/14/2010
Filed Under: Children, Health, Air Transport
LAST Wednesday I began to write about the wide spectrum of conditions we are dealing with when we talk about special children. I discussed global development delay (GDD), mental retardation (MR) and autistic spectrum disorders (ASD), and how there might be overlaps with these conditions.
To make things even more complicated, there are many other medical conditions that are not just associated with, but might actually be the causes, of GDD and MR. For example, a child’s speech delay might be due to a hearing disability. Lead poisoning, which can come from house paint and vehicular emissions, can likewise affect mental development.
The term “special child” is a good one, but carries over the strong stigma associated with older terms, for example, “retarded” or even “mentally ill,” which is the way society stereotypes and judges people. I have heard conversations where someone used the term, and got a response like, “Ah, abnormal child” or “Ah, retarded.”
Hidden labels
The hidden labels of “abnormal” and “retarded” are dangerous, often blocking parents from going to seek professional help and diagnosis, or marginalizing the stigmatized child in school and in the community.
Who knows how many children were forced to drop out of schools because they seemed “retarded” when the slower mental development might have been caused by easily reversible iron deficiency anemia, or malnutrition?
Some years back in my work in an urban poor community in Quezon City, I encountered someone who had dropped out of school at the age of 14, ashamed because he had only reached fourth grade. I suspected he had a learning disability called dyslexia, where the letters in words keep getting interchanged, which makes reading difficult. My suspicions came from the way he would text messages, as well as read signs. We never got to confirm if he had dyslexia because his family could not afford the diagnostic tests. He is now 20 and has a family, but can only find occasional work.
The term “special child” does include those with learning disabilities, and there’s another wide range of conditions here, many of which many families still don’t recognize. Even near-sightedness can create learning difficulties, yet in developing countries like the Philippines, many families do not have their children’s vision checked, partly because of economics and partly because there is still the idea that children don’t generally need glasses.
It might help then if we shift our mind-sets away from “special child” (and its continuing negative connotations) to “children with special needs.” This is especially important for teachers, who tend to only recognize the more extreme and visible “outliers” from the norm: the very “bright” ones, who are then labeled “gifted” and the ones who seem “slow.”
I am sorry about all those quotation marks but as I pointed out on Wednesday, intelligence is a controversial concept. You may have children labeled mentally retarded who have awesome skills in some fields, for example, math or music.
The old term used for them was “idiot savant” but objections have been raised with the term “idiot” so today there are alternative terms like “autistic savant” and even “mega savant,” emphasizing the aspect of genius.
My point is that we may have many savants out there whose potentials will never be developed because our biases about what is normal block us from seeing less apparent forms of genius.
Interchanged terms
Let’s get back now to the Cebu Pacific controversy. Some media reports said that the airline had a rule against boarding more than one passenger with “mental illnesses” on each flight. Other reports said it was more than one “special child.” The way the two terms are interchanged shows that our fears of the “special child” stem from a notion that they are mentally ill.
In the Internet exchanges about the Cebu Pacific incidents, people have argued that special children should not be allowed to fly because they become unruly or violent and could endanger other passengers. Others paint a scenario where there is a flight emergency and that flight attendants would have a hard time evacuating the “retarded.”
But if we use such criteria we would then have to set passenger quotas on people who tend to binge on alcohol. We would also need quotas for infants and toddlers, on the elderly, and on people who are physically handicapped, even someone having a cast for a fractured arm or foot.
The Cebu Pacific controversy reminded me of a case in the United States. In October last year, a woman from New Mexico filed a lawsuit against three airlines that were operating a flight from which she had been asked to disembark. The incident dated back to 2006 and what had happened was that she was breastfeeding her one-year-old daughter while waiting for the plane to take off. The flight attendant asked her to cover herself with a blanket and when she refused, she was made to get off the plane.
The passenger’s complaint led to women launching protest actions in 19 airports where they breastfed in public.
My point is that airline policies often only reflect public notions of morality and what is “normal” or “abnormal.” Cebu Pacific’s policy only reflected public discomfort with and fears of “special children,” and unfortunately, the ones who are most visible with their conditions – children with Down syndrome and global developmental delays, for example – end up the most stigmatized.
Diversity
Rather than training our sights on Cebu Pacific alone, we need to look at how we respond to special children in general in our own homes and schools.
Let me give a concrete example here. Right now, special children usually end up in special schools, which can be very much more expensive than regular schools. Now, what would happen if regular schools began to accept special children? It is actually happening, with a handful of schools, but with quotas and with a screening process that assesses whether the special children can handle life in the regular school.
It’s a good policy, expanding the options for the special children, while allowing “regular” children to become part of the worlds of special children. I visited one such school the other day and realized this is possible only when the schools’ parents and teachers value diversity.
Unfortunately, many of our schools and social institutions, fear anyone who’s different. They will not even allow adopted children, for example, or children of single mothers and separated couples simply because they don’t fit into definitions of a “normal” family. The underlying message of such discriminatory policies is that the “abnormal” children – adopted, “special,” whatever – might “contaminate” the “normal” ones.
Ultimately, we have to recognize that while special children need more time and attention, we also need to be sensitive to how children can be so different from each other, so that siblings in a family or children in one class, will need individualized attention. With that kind of thinking, we would value all children as special, and as gifted.
Philippine Daily Inquirer
First Posted 21:41:00 01/14/2010
Filed Under: Children, Health, Air Transport
LAST Wednesday I began to write about the wide spectrum of conditions we are dealing with when we talk about special children. I discussed global development delay (GDD), mental retardation (MR) and autistic spectrum disorders (ASD), and how there might be overlaps with these conditions.
To make things even more complicated, there are many other medical conditions that are not just associated with, but might actually be the causes, of GDD and MR. For example, a child’s speech delay might be due to a hearing disability. Lead poisoning, which can come from house paint and vehicular emissions, can likewise affect mental development.
The term “special child” is a good one, but carries over the strong stigma associated with older terms, for example, “retarded” or even “mentally ill,” which is the way society stereotypes and judges people. I have heard conversations where someone used the term, and got a response like, “Ah, abnormal child” or “Ah, retarded.”
Hidden labels
The hidden labels of “abnormal” and “retarded” are dangerous, often blocking parents from going to seek professional help and diagnosis, or marginalizing the stigmatized child in school and in the community.
Who knows how many children were forced to drop out of schools because they seemed “retarded” when the slower mental development might have been caused by easily reversible iron deficiency anemia, or malnutrition?
Some years back in my work in an urban poor community in Quezon City, I encountered someone who had dropped out of school at the age of 14, ashamed because he had only reached fourth grade. I suspected he had a learning disability called dyslexia, where the letters in words keep getting interchanged, which makes reading difficult. My suspicions came from the way he would text messages, as well as read signs. We never got to confirm if he had dyslexia because his family could not afford the diagnostic tests. He is now 20 and has a family, but can only find occasional work.
The term “special child” does include those with learning disabilities, and there’s another wide range of conditions here, many of which many families still don’t recognize. Even near-sightedness can create learning difficulties, yet in developing countries like the Philippines, many families do not have their children’s vision checked, partly because of economics and partly because there is still the idea that children don’t generally need glasses.
It might help then if we shift our mind-sets away from “special child” (and its continuing negative connotations) to “children with special needs.” This is especially important for teachers, who tend to only recognize the more extreme and visible “outliers” from the norm: the very “bright” ones, who are then labeled “gifted” and the ones who seem “slow.”
I am sorry about all those quotation marks but as I pointed out on Wednesday, intelligence is a controversial concept. You may have children labeled mentally retarded who have awesome skills in some fields, for example, math or music.
The old term used for them was “idiot savant” but objections have been raised with the term “idiot” so today there are alternative terms like “autistic savant” and even “mega savant,” emphasizing the aspect of genius.
My point is that we may have many savants out there whose potentials will never be developed because our biases about what is normal block us from seeing less apparent forms of genius.
Interchanged terms
Let’s get back now to the Cebu Pacific controversy. Some media reports said that the airline had a rule against boarding more than one passenger with “mental illnesses” on each flight. Other reports said it was more than one “special child.” The way the two terms are interchanged shows that our fears of the “special child” stem from a notion that they are mentally ill.
In the Internet exchanges about the Cebu Pacific incidents, people have argued that special children should not be allowed to fly because they become unruly or violent and could endanger other passengers. Others paint a scenario where there is a flight emergency and that flight attendants would have a hard time evacuating the “retarded.”
But if we use such criteria we would then have to set passenger quotas on people who tend to binge on alcohol. We would also need quotas for infants and toddlers, on the elderly, and on people who are physically handicapped, even someone having a cast for a fractured arm or foot.
The Cebu Pacific controversy reminded me of a case in the United States. In October last year, a woman from New Mexico filed a lawsuit against three airlines that were operating a flight from which she had been asked to disembark. The incident dated back to 2006 and what had happened was that she was breastfeeding her one-year-old daughter while waiting for the plane to take off. The flight attendant asked her to cover herself with a blanket and when she refused, she was made to get off the plane.
The passenger’s complaint led to women launching protest actions in 19 airports where they breastfed in public.
My point is that airline policies often only reflect public notions of morality and what is “normal” or “abnormal.” Cebu Pacific’s policy only reflected public discomfort with and fears of “special children,” and unfortunately, the ones who are most visible with their conditions – children with Down syndrome and global developmental delays, for example – end up the most stigmatized.
Diversity
Rather than training our sights on Cebu Pacific alone, we need to look at how we respond to special children in general in our own homes and schools.
Let me give a concrete example here. Right now, special children usually end up in special schools, which can be very much more expensive than regular schools. Now, what would happen if regular schools began to accept special children? It is actually happening, with a handful of schools, but with quotas and with a screening process that assesses whether the special children can handle life in the regular school.
It’s a good policy, expanding the options for the special children, while allowing “regular” children to become part of the worlds of special children. I visited one such school the other day and realized this is possible only when the schools’ parents and teachers value diversity.
Unfortunately, many of our schools and social institutions, fear anyone who’s different. They will not even allow adopted children, for example, or children of single mothers and separated couples simply because they don’t fit into definitions of a “normal” family. The underlying message of such discriminatory policies is that the “abnormal” children – adopted, “special,” whatever – might “contaminate” the “normal” ones.
Ultimately, we have to recognize that while special children need more time and attention, we also need to be sensitive to how children can be so different from each other, so that siblings in a family or children in one class, will need individualized attention. With that kind of thinking, we would value all children as special, and as gifted.
SM, ASP celebrate National Autism Week
MANILA, Philippines - The SM Committee on Disability Affairs, under the CSR umbrella of SM Cares, together with the Autism Society Philippines (ASP), is celebrating the 14th National Autism Week with the theme “Giant Leaps...Transcending Boundaries” simultaneously in all SM malls nationwide until Jan. 24.
Engineer Bien Mateo, chairman of the SM Committee on Disability Affairs, was made by the ASP as this year’s honorary chairman of the 14th National Autism Week Working Committee.
The celebration took off on Jan. 17 at the SM North Edsa Skydome with a Holy Mass and Family Fun Day. It will culminate with “Angels Walk for Autism” on Jan. 24 at the SM Mall of Asia.
The National Autism Week, which is celebrated every year, aims to raise public awareness on the need to provide a supportive environment among communities to enable children and adults with autism to live with dignity and enable them to function independently and contribute productively to society.
Autism is a lifelong disability and getting people to understand and support ASP activities can make a real difference to the lives of those affected with autism and their families.
SM, through its Committee on Disability Affairs, has been very supportive of the causes of the ASP.
It has offered SM Malls as a venue for all their activities and hosted last September the first-ever sensory film showing of the Disney animated movie “Up,” which was attended by some 100 kids with autism and their families.
Because of its success, the sensory film program will be rolled out nationwide in SM Cinemas and will be scheduled in close coordination with ASP.
Engineer Bien Mateo, chairman of the SM Committee on Disability Affairs, was made by the ASP as this year’s honorary chairman of the 14th National Autism Week Working Committee.
The celebration took off on Jan. 17 at the SM North Edsa Skydome with a Holy Mass and Family Fun Day. It will culminate with “Angels Walk for Autism” on Jan. 24 at the SM Mall of Asia.
The National Autism Week, which is celebrated every year, aims to raise public awareness on the need to provide a supportive environment among communities to enable children and adults with autism to live with dignity and enable them to function independently and contribute productively to society.
Autism is a lifelong disability and getting people to understand and support ASP activities can make a real difference to the lives of those affected with autism and their families.
SM, through its Committee on Disability Affairs, has been very supportive of the causes of the ASP.
It has offered SM Malls as a venue for all their activities and hosted last September the first-ever sensory film showing of the Disney animated movie “Up,” which was attended by some 100 kids with autism and their families.
Because of its success, the sensory film program will be rolled out nationwide in SM Cinemas and will be scheduled in close coordination with ASP.
Friday, January 22, 2010
High Rates Of Birth Defects Found In Autistic Children
Nearly two-thirds of the children with Autistic Spectrum Disorders recorded in the National Birth Defect Registry (NBDR) also suffer from structural birth defects, according the national nonprofit, Birth Defect Research for Children (BDRC). The group reported that most of the defects affect the face, head and central nervous systems of newborns.
Birth Defect Research for Children, a national nonprofit founded in 1982, maintains the registry to collect data from parents on all kinds of structural birth defects and functional deficits including autistic spectrum disorders. Betty Mekdeci, executive director of BDRC explains, "We designed the registry with a collaboration of prominent scientists. The registry's extensive data allows researchers to identify possible patterns underlying the incidence of birth defects as well as prenatal conditions and exposures. We are asking all parents of children with structural and functional birth defects to contact us to register for our database to continue this study."
"Our current data suggests that genetic and environmental triggers may interact to account for the increase in ASDs. We need to collect more data to confirm the pattern we are seeing."
The new analysis reveals that over 60% cases also had structural birth defects, primarily Central Nervous System (CNS) or Craniofacial Defects. The other 40% of the ASD cases reported associated developmental problems, but no reported structural birth defects.
Most frequent CNS disorders reported were Microcephaly (small head), Cerebral Palsy, Chiari Malformation (a structural defect of the brain) and Absent or Thin Corpus Callosum (the band connecting the two halves of the brain), The most frequent Craniofacial Defects included Low Set Ears, Partial Hearing Loss, Abnormal Teeth and Abnormal Facial Structure.
The registry also collects data on prenatal exposures to medications, illnesses and toxins. The most frequently reported maternal exposure was acetaminophen (AP). AP use has increased in recent years. Recent studies have reported associations between maternal AP ingestion and childhood asthma and a stomach defect called gastroschisis.
Birth Defect Research for Children, a national nonprofit founded in 1982, maintains the registry to collect data from parents on all kinds of structural birth defects and functional deficits including autistic spectrum disorders. Betty Mekdeci, executive director of BDRC explains, "We designed the registry with a collaboration of prominent scientists. The registry's extensive data allows researchers to identify possible patterns underlying the incidence of birth defects as well as prenatal conditions and exposures. We are asking all parents of children with structural and functional birth defects to contact us to register for our database to continue this study."
"Our current data suggests that genetic and environmental triggers may interact to account for the increase in ASDs. We need to collect more data to confirm the pattern we are seeing."
The new analysis reveals that over 60% cases also had structural birth defects, primarily Central Nervous System (CNS) or Craniofacial Defects. The other 40% of the ASD cases reported associated developmental problems, but no reported structural birth defects.
Most frequent CNS disorders reported were Microcephaly (small head), Cerebral Palsy, Chiari Malformation (a structural defect of the brain) and Absent or Thin Corpus Callosum (the band connecting the two halves of the brain), The most frequent Craniofacial Defects included Low Set Ears, Partial Hearing Loss, Abnormal Teeth and Abnormal Facial Structure.
The registry also collects data on prenatal exposures to medications, illnesses and toxins. The most frequently reported maternal exposure was acetaminophen (AP). AP use has increased in recent years. Recent studies have reported associations between maternal AP ingestion and childhood asthma and a stomach defect called gastroschisis.
Scientific Learning's Fast ForWord Software Approved By Australian Government As Intervention For Children With Autism
Scientific Learning Corp. (NASDAQ:SCIL) today announced that the Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs has named the Fast ForWord ® family of products as an approved intervention for children under age six who are diagnosed with Autism Spectrum Disorders (ASDs).
Designed to accelerate learning by developing the student brain to process more efficiently, the Fast ForWord educational software consists of scientifically proven, intervention programs that apply neuroscience principles to build the fundamental cognitive skills required to read and learn. The strengthening of these skills results in a wide range of improved critical language and reading abilities, such as phonological awareness, phonemic awareness, fluency, vocabulary, comprehension, decoding, working memory, syntax and grammar.
In Australia, the Fast ForWord program is available to eligible children under the Helping Children with Autism funding package. Through this package, the Australian Government is working to address the need for support and services for children with ASDs. As part of the package, the government offers funding for early intervention services for children ages zero to seven who are diagnosed with an ASD. Eligible families can access the Fast ForWord program from Scientific Learning's two Value Added Representative (VAR) organizations in Australia, LearnFast Australia/Lindfield Speech Pathology & Learning Center in Sydney, New South Wales and Sonic Learning in Perth.
Designed to accelerate learning by developing the student brain to process more efficiently, the Fast ForWord educational software consists of scientifically proven, intervention programs that apply neuroscience principles to build the fundamental cognitive skills required to read and learn. The strengthening of these skills results in a wide range of improved critical language and reading abilities, such as phonological awareness, phonemic awareness, fluency, vocabulary, comprehension, decoding, working memory, syntax and grammar.
In Australia, the Fast ForWord program is available to eligible children under the Helping Children with Autism funding package. Through this package, the Australian Government is working to address the need for support and services for children with ASDs. As part of the package, the government offers funding for early intervention services for children ages zero to seven who are diagnosed with an ASD. Eligible families can access the Fast ForWord program from Scientific Learning's two Value Added Representative (VAR) organizations in Australia, LearnFast Australia/Lindfield Speech Pathology & Learning Center in Sydney, New South Wales and Sonic Learning in Perth.
Communication Problems In The Brain
Maturation disorders of nerve terminals may trigger autism; researchers in Heidelberg publish in the Proceedings of the National Academy of Sciences
For brain cells to communicate, the contacts to each other must function. The protein molecule neuroligin-1 plays an important role in this as it stimulates the necessary maturation processes at the contact sites (synapses) of the nerves. A synaptic maturation disorder is possibly involved in the development of autism. Dr. Thomas Dresbach and his team from the Institute for Anatomy and Cell Biology at the University of Heidelberg, in cooperation with the study group led by Professor Dr. Thomas Kuner at the same institute and Professor Dr. Nils Brose, Max Planck Institute for Experimental Medicine in Göttingen, have published their results in the prestigious international journal PNAS (Proceedings of the National Academy of Sciences).
One hundred billion nerve cells make our brain a thinking machine. Each of these nerve fibers produces a long extension, the axon, which terminates in numerous small knobs. Transmitters are released here that transfer information to the next nerve cell. The contact site between nerve ending and adjacent nerve cell is called a synapse. The number and location of active synapses determine which areas of the brain are especially active at a given time.
Neuroligin-1 protein necessary for maturation
The synapses of young nerve cells must mature before they can release their neurotransmitters to the full extent. Researchers were able to show using genetically modified nerve cells from mice that the postsynaptic nerve cell, the receptor, must form a sufficient amount of a certain protein molecule, neuroligin-1, to allow this maturation process to take place. In addition, the nerve endings from where information is sent must release slight amounts of neurotransmitters to stimulate the neuroligin in the postsynaptic nerve cell.
"A fully functioning contact can develop only if both sides, transmitter and receptor of information, are involved in the maturation process," explained Dr. Dresbach. If no neuroligin-1 is formed, the nerve endings remain at an immature stage and release fewer neurotransmitters; the flow of information is interrupted. The nerve endings can only whisper, so to speak.
Autism caused by a malfunction at the synapses?
"The results are significant for actual concepts about how autism develops," says Professor Dr. Joachim Kirsch, director of the Institute for Anatomy and Cell Biology. Symptoms of autism are first noticed in early childhood as an information processing disorder. The symptoms may be more or less pronounced, but all patients display weaknesses in social contacts and communication. "There are many indications that malfunctions of synaptic molecules are involved in the development of this illness. It has thus far been unclear exactly what these malfunctions are, but we now know what to look for," says Professor Kirsch. The study was funded by the FRONTIER program of the excellence initiative at the University of Heidelberg.
For brain cells to communicate, the contacts to each other must function. The protein molecule neuroligin-1 plays an important role in this as it stimulates the necessary maturation processes at the contact sites (synapses) of the nerves. A synaptic maturation disorder is possibly involved in the development of autism. Dr. Thomas Dresbach and his team from the Institute for Anatomy and Cell Biology at the University of Heidelberg, in cooperation with the study group led by Professor Dr. Thomas Kuner at the same institute and Professor Dr. Nils Brose, Max Planck Institute for Experimental Medicine in Göttingen, have published their results in the prestigious international journal PNAS (Proceedings of the National Academy of Sciences).
One hundred billion nerve cells make our brain a thinking machine. Each of these nerve fibers produces a long extension, the axon, which terminates in numerous small knobs. Transmitters are released here that transfer information to the next nerve cell. The contact site between nerve ending and adjacent nerve cell is called a synapse. The number and location of active synapses determine which areas of the brain are especially active at a given time.
Neuroligin-1 protein necessary for maturation
The synapses of young nerve cells must mature before they can release their neurotransmitters to the full extent. Researchers were able to show using genetically modified nerve cells from mice that the postsynaptic nerve cell, the receptor, must form a sufficient amount of a certain protein molecule, neuroligin-1, to allow this maturation process to take place. In addition, the nerve endings from where information is sent must release slight amounts of neurotransmitters to stimulate the neuroligin in the postsynaptic nerve cell.
"A fully functioning contact can develop only if both sides, transmitter and receptor of information, are involved in the maturation process," explained Dr. Dresbach. If no neuroligin-1 is formed, the nerve endings remain at an immature stage and release fewer neurotransmitters; the flow of information is interrupted. The nerve endings can only whisper, so to speak.
Autism caused by a malfunction at the synapses?
"The results are significant for actual concepts about how autism develops," says Professor Dr. Joachim Kirsch, director of the Institute for Anatomy and Cell Biology. Symptoms of autism are first noticed in early childhood as an information processing disorder. The symptoms may be more or less pronounced, but all patients display weaknesses in social contacts and communication. "There are many indications that malfunctions of synaptic molecules are involved in the development of this illness. It has thus far been unclear exactly what these malfunctions are, but we now know what to look for," says Professor Kirsch. The study was funded by the FRONTIER program of the excellence initiative at the University of Heidelberg.
Rate Of Autism Disorders Climbs To 1 Percent Among 8 Year Olds
Autism and related development disorders are becoming more common, with a prevalence rate approaching 1 percent among American 8-year-olds, according to new data from researchers at the University of Alabama at Birmingham (UAB) School of Public Health and the Centers for Disease Control and Prevention (CDC).
The study is a partnership between UAB, the CDC and 10 other U.S. research sites. It shows that one in 110 American 8-year-olds is classified as having an autism spectrum disorder (ASD), a 57 percent increase in ASD cases compared to four years earlier.
The new findings, published Dec. 18 in the CDC's Morbidity and Mortality Weekly Report (MMWR), highlight the need for social and educational services to help those affected by the condition, said Beverly Mulvihill, Ph.D., a UAB associate professor of public health and co-author on the study.
ASDs are a group of developmental disabilities such as autism and Asperger disorder that are characterized by delays or changes in childhood socialization, communication and behavior.
"This is a dramatic increase in the number of kids classified as autistic or documented on the spectrum of similar disorders," Mulvihill said. "It is not entirely clear what is causing the rise, but we know major collaborative efforts are needed to improve the understanding and lives of people and families impacted."
The MMWR study discusses possible factors that might contribute to the increase in ASD cases. They include a broader definition of autism disorders and a heightened awareness of ASD by parents, doctors, educators and other professionals. The findings do not address whether or not any of the increase is attributable to a true increase in the risk of developing ASD, more frequent and earlier diagnoses, and other factors.
Data comes from the Autism and Developmental Disabilities Monitoring (ADDM) Network, a collection of 11 sites in Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina and Wisconsin. ADDM reviewers are uniformly trained to review and confirm cases; some children included in the study have documented ASD symptoms but never received a diagnosis.
The study also found that boys are 4.5 times more likely than girls to have ASD, a finding that confirms earlier studies, says Martha Wingate, Dr.P.H., a UAB assistant professor of public health and study co-author.
"It still is not clear why males more frequently are affected," Wingate said. "One thing we know for sure is that more research is needed to quantify the effects of single or multiple factors such as diagnosis patterns, inclusion of milder cases and other components."
The ADDM sites are not selected based on any statistical pattern, but the 300,000-plus children included in the study represent 8 percent of the nation's 8-year-olds.
The Alabama Autism Surveillance Project, located within the UAB Department of Health Care Organization and Policy, is a member of the ADDM network. Funding for the project is from the CDC's National Center for Birth Defects and Developmental Disabilities Division.
About the UAB School of Public Health
The School of Public Health is a community of scholars and professionals working and teaching in varied arenas of public health with the goal of fostering research and best practices crucial to the health of our nation and its peoples. The school offers more than 20 areas of study and manages dozens of research and community-service centers.
The study is a partnership between UAB, the CDC and 10 other U.S. research sites. It shows that one in 110 American 8-year-olds is classified as having an autism spectrum disorder (ASD), a 57 percent increase in ASD cases compared to four years earlier.
The new findings, published Dec. 18 in the CDC's Morbidity and Mortality Weekly Report (MMWR), highlight the need for social and educational services to help those affected by the condition, said Beverly Mulvihill, Ph.D., a UAB associate professor of public health and co-author on the study.
ASDs are a group of developmental disabilities such as autism and Asperger disorder that are characterized by delays or changes in childhood socialization, communication and behavior.
"This is a dramatic increase in the number of kids classified as autistic or documented on the spectrum of similar disorders," Mulvihill said. "It is not entirely clear what is causing the rise, but we know major collaborative efforts are needed to improve the understanding and lives of people and families impacted."
The MMWR study discusses possible factors that might contribute to the increase in ASD cases. They include a broader definition of autism disorders and a heightened awareness of ASD by parents, doctors, educators and other professionals. The findings do not address whether or not any of the increase is attributable to a true increase in the risk of developing ASD, more frequent and earlier diagnoses, and other factors.
Data comes from the Autism and Developmental Disabilities Monitoring (ADDM) Network, a collection of 11 sites in Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina and Wisconsin. ADDM reviewers are uniformly trained to review and confirm cases; some children included in the study have documented ASD symptoms but never received a diagnosis.
The study also found that boys are 4.5 times more likely than girls to have ASD, a finding that confirms earlier studies, says Martha Wingate, Dr.P.H., a UAB assistant professor of public health and study co-author.
"It still is not clear why males more frequently are affected," Wingate said. "One thing we know for sure is that more research is needed to quantify the effects of single or multiple factors such as diagnosis patterns, inclusion of milder cases and other components."
The ADDM sites are not selected based on any statistical pattern, but the 300,000-plus children included in the study represent 8 percent of the nation's 8-year-olds.
The Alabama Autism Surveillance Project, located within the UAB Department of Health Care Organization and Policy, is a member of the ADDM network. Funding for the project is from the CDC's National Center for Birth Defects and Developmental Disabilities Division.
About the UAB School of Public Health
The School of Public Health is a community of scholars and professionals working and teaching in varied arenas of public health with the goal of fostering research and best practices crucial to the health of our nation and its peoples. The school offers more than 20 areas of study and manages dozens of research and community-service centers.
Landmark Consensus Articles Published In Pediatrics Acknowledge The Need To Improve Treatment Of Gastrointestinal Disorders In Individuals With Autism
A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self-injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.
Because it was felt that many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, representatives from the Autism Research Institute (ARI) and other autism advocacy groups worked to convene a gut consensus meeting from which the articles were derived. On May 29-30, 2008, a multidisciplinary panel of 27 clinical and research experts met in Boston, Massachusetts to develop recommendations for the evaluation and treatment of GI disorders in individuals with ASD.
ARI's Director Dr. Stephen Edelson commented, "This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism. This published report brings much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions of the report are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative."
Parents and physicians should be on the lookout for the most common GI symptoms reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, reflux, and abdominal bloating. Problem behaviors such as self-injury and aggression, as well as overall changes such as sleep disturbance or irritability, might be indicators of stomach pain. The authors concluded that "The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD."
Because it was felt that many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, representatives from the Autism Research Institute (ARI) and other autism advocacy groups worked to convene a gut consensus meeting from which the articles were derived. On May 29-30, 2008, a multidisciplinary panel of 27 clinical and research experts met in Boston, Massachusetts to develop recommendations for the evaluation and treatment of GI disorders in individuals with ASD.
ARI's Director Dr. Stephen Edelson commented, "This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism. This published report brings much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions of the report are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative."
Parents and physicians should be on the lookout for the most common GI symptoms reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, reflux, and abdominal bloating. Problem behaviors such as self-injury and aggression, as well as overall changes such as sleep disturbance or irritability, might be indicators of stomach pain. The authors concluded that "The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD."
First Step Toward Needed Guidelines For Children With Autism Provided By Pediatrics Gastrointestinal Consensus Statement And Recommendations
Autism Speaks applauds the consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal (GI) disorders in children with autism spectrum disorders (ASD) released online in Pediatrics as one step in advancing physician awareness of unique challenges in the medical management of children with autism. "We are pleased to see the publication of these consensus recommendations. Autism Speaks' current efforts will take this further by creating evidence-based guidelines for physicians. The goal is to develop a comprehensive care model that will guide physicians in addressing a wide range of medical issues, including GI problems, that many individuals with autism suffer from," commented Geraldine Dawson, Ph.D., Autism Speaks chief science officer.
The two reports published today present outcomes of a meeting held in May 2008, sponsored by the Autism Forum, in which working groups participating in the meeting reviewed current evidence on the evaluation and treatment of GI disorders specifically for children with autism. The 2008 meeting from which these consensus recommendations were derived recognized that health care practitioners severely lack solid information to guide care of children with autism and GI problems and there is a need for more research data, including genetic research, as a prerequisite to develop evidence-based guidelines specific to autism.
"The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches," reacted Dr. Dawson. "Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks' Autism Treatment Network (ATN)."
Dan Coury, M.D., ATN medical director, commented, "We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines." In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. "Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians," added Dr. Dawson.
The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.
In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, "The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN's on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD."
Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there's not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) - the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.
The two reports published today present outcomes of a meeting held in May 2008, sponsored by the Autism Forum, in which working groups participating in the meeting reviewed current evidence on the evaluation and treatment of GI disorders specifically for children with autism. The 2008 meeting from which these consensus recommendations were derived recognized that health care practitioners severely lack solid information to guide care of children with autism and GI problems and there is a need for more research data, including genetic research, as a prerequisite to develop evidence-based guidelines specific to autism.
"The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches," reacted Dr. Dawson. "Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks' Autism Treatment Network (ATN)."
Dan Coury, M.D., ATN medical director, commented, "We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines." In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. "Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians," added Dr. Dawson.
The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.
In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, "The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN's on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD."
Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there's not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) - the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.
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