Unfortunately a new study might imply that if you have Moebius Syndrome, it's possible. Given that there are so many in our society who are obsessed with appearance and looks, especially if those fit in with today's societal definition of what is "good-looking", then someone with Moebius too often is judged by such folks as being "unattractive." And if certain people define you as being unattractive, that may trigger bullying instincts. Here, read more about it--and then I'll have some comments at the end of the piece:
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Some workplace bullies will target anyone for any reason. But preliminary research has shown that less attractive employees are more likely to become victims of bullying than others.
Though much of the bullying research has focused on what leads someone to bully others, very little attention has been paid to what characteristics may draw their ire. A new study examined whether physical attractiveness and personality traits made people more likely to be the target of aggressive or hostile behavior from co-workers.
“We focused on the victim because the research literature has implicitly assumed that bullying behavior is due to the traits of the bully,” study author Dr. Timothy A. Judge, professor of management at the University of Notre Dame Mendoza College of Business, said. “To reduce bullying, we need to see the whole picture.”
Previous studies have shown that attractive people are perceived as both friendlier and more likeable than unattractive people. They are treated better, receive more attention and experience less hostility from others, compared to their homelier colleagues.
Research on personality traits has found that people who are victims of bullying tend to have a more negative disposition - a tendency to be angry, anxious, emotional or irritable.
In the current study, published in the journal Human Performance, Judge also found that those with negative dispositions were more likely to be bullied than agreeable employees. These negative emotions were sensed by co-workers, suggesting that negative employees tend to elicit similar feelings in their coworkers, according to the study's authors.
The study also found that unattractive employees were more likely to be bullied at work. The authors offered several hypotheses to explain these results.
“One possibility is that unattractive employees act differently,” Judge said. “We know that attractiveness is related to self-esteem and low self-esteem is related to bullying by others – so it may be that unattractive employees show a victim mentality that makes them easy targets for workplace bullies.”
However, Judge ultimately blames society for placing too much value on looks.
“There are few occupations in which attractiveness is job-related, yet it plays an important role in hiring decisions, pay decisions and, we show, bullying behavior,” Judge said.
Another possibility is that bullies look for any excuse to target someone—whether it’s a physical handicap or an emotional vulnerability.
“Unattractiveness may be one of those cues that activate bullying instincts,” Judge said. In fact, plenty of research has found that weak or unattractive children are more likely to be victims of schoolyard bullying.
“Some bullies may outgrow these tendencies less than we think,” Judge said.
Though bullies may not seem like the most self-reflective types of people, if they can better understand what sets off their hostility, they may be better able to control their behavior.
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So our job remains: we need to continue to raise awareness about Moebius Syndrome--and other physical differences that can exist, too; we need to remind people that those with differences are people, too; that beauty doesn't always have to do with outward appearances and with an artificial societal definition of what "beautiful" is supposed to look like; that beauty comes from the heart, not just from one's looks. In other words, we have to change the culture.
It's a big job! But we just have to work at it, day by day, piece by piece.
Wednesday, August 14, 2013
Tuesday, August 13, 2013
WHAT IF THERE WAS A CURE?
This piece asks: what if there was a cure for Down Syndrome? So, naturally that might make those of us in our community ask: what if there was a cure for Moebius Syndrome? Seems like a cure couldn't possibly have anything bad or negative about it, right? It could only be good, right? But--hmmm. Think about it some more. Just as these folks in these piece, who have been affected by Down Syndrome, thought about it. A cure after all would change things. Only for the better? Well...read on:
In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.
“I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”
But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.
“It’s so hard to imagine you could actually do that,” Mast told NBC News. “Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, ‘Oh my goodness, how would that impact the rest of her?’”
Hailed as a “cure in a Petri dish,” the research by scientists at the University of Massachusetts Medical School is the first to find that it may be possible to switch off the genetic material responsible for the condition that causes cognitive delays, heart defects and shortened lifespans.
The development is expected to help create new treatments for problems caused by Down syndrome -- but it also raises the prospect of eliminating the condition entirely.
Since it became public last month, the breakthrough has sparked a firestorm of reaction among parents, advocates, ethicists and people with the condition, said Dr. Brian Skotko, a medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital.
“This research really launches a million questions,” Skotko said.
On one hand, almost everyone agrees there’s a need for treatments to help the 250,000 people in the U.S. living with Down syndrome, including the nearly 7,000 babies born with it each year.
On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.
"If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."
Brian Long of Boulder, Colo., is the father a 19-year-old son with Down syndrome. He welcomes the research, which could lead to treatments to boost Connor’s intellectual abilities and speaking skills and prevent disease. But he also wonders how tinkering with chromosomes could alter the essence of his son.
“So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”
Advocates like Julie Cevallos, vice president of marketing for the National Down Syndrome Society, emphasize that the research is still early.
“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.
David Egan, a 35-year-old Vienna, Va., man with Down syndrome, said he applauds the progress in part because it might help with some of the social stigma that comes with the disorder. He has friends who've been made fun of because of their disability, who have a hard time coping with the condition.
“I’m not saying to shut it down completely,” said Egan, who has worked for 17 years in the distribution department at Booz Allen Hamilton, the technology consulting firm. “I would say just to understand more about it.”
But ethicists fear that genetic manipulation could spell the end of the disorder – and of people who have it.
“We now see very few persons with the symptoms of polio or the scars of smallpox,” said Art Caplan, head of medical ethics at New York University Langone Medical Center. “The same fate, despite the protests of some, awaits Down syndrome and other genetic diseases if engineering genes creates cures.”
That strong reaction surprised Jeanne Lawrence, the professor of cell and developmental biology who led the research. People may misunderstand the scope and promise of her work, she said.
It likely wouldn't be possible to "cure" Down syndrome, because the condition occurs at conception, she said.
“Even looking forward really far, I don’t see how we could fundamentally change a person who has trisomy 21 to silence all the chromosomes in their body,” said Lawrence.
Instead, it might be possible to target specific conditions: Perhaps there will be a way to treat congenital heart disease early in children with Down syndrome or to stave off Alzheimer's disease in adults, she added.
No question, the research is an advance in the understanding of Down syndrome, which occurs when people are born with three copies of chromosome 21, instead of the normal two copies.
(Humans are typically born with 23 pairs of chromosomes, including one pair of sex chromosomes, for a total of 46 in each cell. People with Down syndrome have 47 chromosomes in each cell.)
The researchers discovered that a gene called XIST -- which normally turns off one of the two copies of the X chromosome in female mammals, including humans -- could be inserted into the extra copy of chromosome 21 in lab cultures.
Using skin cells from a person with Down syndrome, they created pluripotent stem cells, which can form a range of different body cell types. When they inserted the XIST gene, they found that it effectively silenced the extra chromosome.
When they compared brain cells with and without the XIST gene, they found that those in which the extra chromosome had been suppressed grew more quickly and were better able to form progenitors of other brain cells, Lawrence said.
“That’s kind of useful right away,” she told NBC News. “There hasn’t been a good way to understand what’s wrong with these cells.”
But her work was never targeted to eliminate the condition, Lawrence added.
“I guess that we always thought that we were developing therapies to help children with Down syndrome. We never thought for a moment we would aid in the eradication of it,” Lawrence said.
That’s a relief to geneticists like Skotko. He worries about the demographics of the disorder, which has been altered from an estimate of 400,000 people with Down syndrome in the U.S. to 250,000, according to new research by Dr. Edward R.B. McCabe, chief medical officer at the March of Dimes.
The number of babies born with Down syndrome has been rising in the past decade, McCabe found. But research suggests that about 74 percent of women who receive a prenatal diagnosis of Down syndrome end their pregnancies. And -- in a country where women are delaying childbirth -- there are not nearly as many Down syndrome births as there could have been.
“What if fewer babies with Down syndrome are being born and Down syndrome starts to inch closer to being a rare condition?” said Skotko.
The promise of new drug therapies and treatments may help, he says, giving hope to families expecting Down syndrome babies and to those with older children – and adults.
Still, Jawanda Mast says she’s certain the questions raised by the new research will be debated for years in public meetings and in private conversations.
“It’s an interesting thing because Rachel’s whole life, there’s been this discussion: ‘If you could take it away, would you?’” she said. “I think, ethically, we’re just taking the cap off the bottle.”
*******************************
In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.
“I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”
But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.
“It’s so hard to imagine you could actually do that,” Mast told NBC News. “Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, ‘Oh my goodness, how would that impact the rest of her?’”
Hailed as a “cure in a Petri dish,” the research by scientists at the University of Massachusetts Medical School is the first to find that it may be possible to switch off the genetic material responsible for the condition that causes cognitive delays, heart defects and shortened lifespans.
The development is expected to help create new treatments for problems caused by Down syndrome -- but it also raises the prospect of eliminating the condition entirely.
Since it became public last month, the breakthrough has sparked a firestorm of reaction among parents, advocates, ethicists and people with the condition, said Dr. Brian Skotko, a medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital.
“This research really launches a million questions,” Skotko said.
On one hand, almost everyone agrees there’s a need for treatments to help the 250,000 people in the U.S. living with Down syndrome, including the nearly 7,000 babies born with it each year.
On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.
"If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."
Brian Long of Boulder, Colo., is the father a 19-year-old son with Down syndrome. He welcomes the research, which could lead to treatments to boost Connor’s intellectual abilities and speaking skills and prevent disease. But he also wonders how tinkering with chromosomes could alter the essence of his son.
“So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”
Advocates like Julie Cevallos, vice president of marketing for the National Down Syndrome Society, emphasize that the research is still early.
“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.
David Egan, a 35-year-old Vienna, Va., man with Down syndrome, said he applauds the progress in part because it might help with some of the social stigma that comes with the disorder. He has friends who've been made fun of because of their disability, who have a hard time coping with the condition.
“I’m not saying to shut it down completely,” said Egan, who has worked for 17 years in the distribution department at Booz Allen Hamilton, the technology consulting firm. “I would say just to understand more about it.”
But ethicists fear that genetic manipulation could spell the end of the disorder – and of people who have it.
“We now see very few persons with the symptoms of polio or the scars of smallpox,” said Art Caplan, head of medical ethics at New York University Langone Medical Center. “The same fate, despite the protests of some, awaits Down syndrome and other genetic diseases if engineering genes creates cures.”
That strong reaction surprised Jeanne Lawrence, the professor of cell and developmental biology who led the research. People may misunderstand the scope and promise of her work, she said.
It likely wouldn't be possible to "cure" Down syndrome, because the condition occurs at conception, she said.
“Even looking forward really far, I don’t see how we could fundamentally change a person who has trisomy 21 to silence all the chromosomes in their body,” said Lawrence.
Instead, it might be possible to target specific conditions: Perhaps there will be a way to treat congenital heart disease early in children with Down syndrome or to stave off Alzheimer's disease in adults, she added.
No question, the research is an advance in the understanding of Down syndrome, which occurs when people are born with three copies of chromosome 21, instead of the normal two copies.
(Humans are typically born with 23 pairs of chromosomes, including one pair of sex chromosomes, for a total of 46 in each cell. People with Down syndrome have 47 chromosomes in each cell.)
The researchers discovered that a gene called XIST -- which normally turns off one of the two copies of the X chromosome in female mammals, including humans -- could be inserted into the extra copy of chromosome 21 in lab cultures.
Using skin cells from a person with Down syndrome, they created pluripotent stem cells, which can form a range of different body cell types. When they inserted the XIST gene, they found that it effectively silenced the extra chromosome.
When they compared brain cells with and without the XIST gene, they found that those in which the extra chromosome had been suppressed grew more quickly and were better able to form progenitors of other brain cells, Lawrence said.
“That’s kind of useful right away,” she told NBC News. “There hasn’t been a good way to understand what’s wrong with these cells.”
But her work was never targeted to eliminate the condition, Lawrence added.
“I guess that we always thought that we were developing therapies to help children with Down syndrome. We never thought for a moment we would aid in the eradication of it,” Lawrence said.
That’s a relief to geneticists like Skotko. He worries about the demographics of the disorder, which has been altered from an estimate of 400,000 people with Down syndrome in the U.S. to 250,000, according to new research by Dr. Edward R.B. McCabe, chief medical officer at the March of Dimes.
The number of babies born with Down syndrome has been rising in the past decade, McCabe found. But research suggests that about 74 percent of women who receive a prenatal diagnosis of Down syndrome end their pregnancies. And -- in a country where women are delaying childbirth -- there are not nearly as many Down syndrome births as there could have been.
“What if fewer babies with Down syndrome are being born and Down syndrome starts to inch closer to being a rare condition?” said Skotko.
The promise of new drug therapies and treatments may help, he says, giving hope to families expecting Down syndrome babies and to those with older children – and adults.
Still, Jawanda Mast says she’s certain the questions raised by the new research will be debated for years in public meetings and in private conversations.
“It’s an interesting thing because Rachel’s whole life, there’s been this discussion: ‘If you could take it away, would you?’” she said. “I think, ethically, we’re just taking the cap off the bottle.”
*******************************
Monday, August 12, 2013
THE FIGHT AGAINST BULLYING: AN UPDATE
Kerry Kennedy, of the Robert F. Kennedy Center for Justice and Human Rights, writes an important anti-bullying column today in the Washington Post. In it, she discusses her organization's human rights/anti-bullying curriculum (which I did not even know they had). It's called "Speak Truth to Power" (STTP), and she demonstrates in her piece below how it can work. Good stuff. Read more about it below. There's only one thing I wish I'd seen in her piece, but did not--and that is, a recognition on her part that bullying can often come at the expense of those with physical differences. The examples Ms. Kennedy gives below have to do with bullying based on racial/ethnic prejudice, and political differences. And those certainly exist and must be dealt with. But bullying based on race, ethnicity, class, or gender unfortunately ain't the only game in town. And we need to keep reminding folks of that.
Still, I'm glad this campaign exists. Read below what Ms. Kennedy has to say:
When a wave of immigrant families settled in Bucyrus, Ohio, the schools faced a clash of cultures. Some 96 percent of the city’s 12,000 residents identify as white. In one classroom, a teacher instructed the class that Mexican immigrants were to blame for drug trafficking in the United States. Following his comments, a Mexican American fifth-grader was targeted with racial slurs, harassed and then suspended for misconduct.
Bucyrus had a bullying problem, and city officials wanted to do more than punish students and react to incidents; rather, they wanted to stop the bullying before it began. They wanted a school environment in which standing up for someone in trouble would be a source of pride and standing aside would be a source of embarrassment. They wanted to teach courage in the face of persecution, even when — especially when — students saw their friends persecuting others.
And so it happened that I received a call from the superintendent of Bucyrus City Schools. He had heard about Speak Truth To Power (STTP), the human rights education curriculum offered by the Robert F. Kennedy Center for Justice and Human Rights, the organization my family founded in 1968 to carry forward my father’s unfinished work.
We teach that curriculum in schools around the world — from Phnom Penh, Cambodia, to Pisa, Italy, from Stockholm to Chicago. Some of our STTP students live in towns that still bear the scars of World War II or count their relatives among the victims of the Khmer Rouge. Here in the United States, too many of our students follow the bell at recess to a playground rife with gang violence.
Two years after the superintendent reached out to me, students in Bucyrus schools now learn the stories of legendary human rights heroes such as anti-apartheid leader Desmond Tutu and Holocaust survivor Elie Wiesel. They also hear about such women as Juliana Dogbadzi, an escaped child sex slave who at age 20 single-handedly emancipated 5,000 girls by successfully lobbying her government to ban a centuries-old cult practice. Students not only learn about human rights defenders, but they also are trained to become defenders themselves.
Following the implementation of STTP, according to a forthcoming independent study we commissioned, Bucyrus students reported a change in attitude regarding bullying, particularly their awareness of bullying as an issue. Administrators have seen an increase in reports of bullying, and one student described the STTP activities as “helpful not just in handling bullying, but [providing] reasons to be more open-minded about other people.”
We went to Bucyrus to teach Speak Truth To Power, our first experience working directly with a school and community to target bullying, and we learned something ourselves. Bullying is, at its core, a human rights violation. It is the abuse of the powerless at the hands of the powerful, and it is a threat against the right to receive an education free from persecution. Bullying is the first human rights violation millions of students in the United States will confront. As a human rights organization, it’s not something we can ignore.
Two children in every classroom in America are estimated to miss at least one day of school each month because they feel unsafe. Local governments realize we cannot afford to dismiss youth violence as simply “kids being kids.” Anti-bullying legislation has been passed in 49 states, the District of Columbia and Puerto Rico.
But laws and reporting systems aren’t enough. We must move beyond simply having the systems in place to react to bullying. We must instill in our youth the ideals of civility and respect, and we must create environments that prevent bullying everywhere our children live, learn and play.
Putting prevention back in bullying prevention is the goal of the RFK Center’s newly launched RFK Project SEATBELT — Safe Environments Achieved Through Bullying prevention, Engagement, Leadership and Teaching respect. The initiative provides resources for parents, educators and community members to create supportive environments through a human rights framework that instills responsibility, respect and resiliency to prevent bullying.
The initiative’s name is our answer to critics who say bullying is ingrained in the culture of an American childhood. To those people, I ask: Who remembers the days when wearing a seat belt was considered optional?
In my father’s lifetime, manufacturers weren’t even required to install seat belts in their vehicles, and it wasn’t until 1984 that riders were required to use them. But when my daughters get in a car today, putting on their seat belts is second nature. In just one generation, we watched a profound shift in social norms related to seat belts. How many people in 1984 said that Americans would never be persuaded to change an ingrained behavior in the name of public safety?
We can change for the better. We do it all the time, and our children are even better at it than we are. Parents, teachers, neighbors, bus drivers — we all can do our part to raise children who see themselves as human rights defenders. In doing so, we’re not just creating safer schools for them but also passing on to them a more just and peaceful world.
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Still, I'm glad this campaign exists. Read below what Ms. Kennedy has to say:
When a wave of immigrant families settled in Bucyrus, Ohio, the schools faced a clash of cultures. Some 96 percent of the city’s 12,000 residents identify as white. In one classroom, a teacher instructed the class that Mexican immigrants were to blame for drug trafficking in the United States. Following his comments, a Mexican American fifth-grader was targeted with racial slurs, harassed and then suspended for misconduct.
Bucyrus had a bullying problem, and city officials wanted to do more than punish students and react to incidents; rather, they wanted to stop the bullying before it began. They wanted a school environment in which standing up for someone in trouble would be a source of pride and standing aside would be a source of embarrassment. They wanted to teach courage in the face of persecution, even when — especially when — students saw their friends persecuting others.
And so it happened that I received a call from the superintendent of Bucyrus City Schools. He had heard about Speak Truth To Power (STTP), the human rights education curriculum offered by the Robert F. Kennedy Center for Justice and Human Rights, the organization my family founded in 1968 to carry forward my father’s unfinished work.
We teach that curriculum in schools around the world — from Phnom Penh, Cambodia, to Pisa, Italy, from Stockholm to Chicago. Some of our STTP students live in towns that still bear the scars of World War II or count their relatives among the victims of the Khmer Rouge. Here in the United States, too many of our students follow the bell at recess to a playground rife with gang violence.
Two years after the superintendent reached out to me, students in Bucyrus schools now learn the stories of legendary human rights heroes such as anti-apartheid leader Desmond Tutu and Holocaust survivor Elie Wiesel. They also hear about such women as Juliana Dogbadzi, an escaped child sex slave who at age 20 single-handedly emancipated 5,000 girls by successfully lobbying her government to ban a centuries-old cult practice. Students not only learn about human rights defenders, but they also are trained to become defenders themselves.
Following the implementation of STTP, according to a forthcoming independent study we commissioned, Bucyrus students reported a change in attitude regarding bullying, particularly their awareness of bullying as an issue. Administrators have seen an increase in reports of bullying, and one student described the STTP activities as “helpful not just in handling bullying, but [providing] reasons to be more open-minded about other people.”
We went to Bucyrus to teach Speak Truth To Power, our first experience working directly with a school and community to target bullying, and we learned something ourselves. Bullying is, at its core, a human rights violation. It is the abuse of the powerless at the hands of the powerful, and it is a threat against the right to receive an education free from persecution. Bullying is the first human rights violation millions of students in the United States will confront. As a human rights organization, it’s not something we can ignore.
Two children in every classroom in America are estimated to miss at least one day of school each month because they feel unsafe. Local governments realize we cannot afford to dismiss youth violence as simply “kids being kids.” Anti-bullying legislation has been passed in 49 states, the District of Columbia and Puerto Rico.
But laws and reporting systems aren’t enough. We must move beyond simply having the systems in place to react to bullying. We must instill in our youth the ideals of civility and respect, and we must create environments that prevent bullying everywhere our children live, learn and play.
Putting prevention back in bullying prevention is the goal of the RFK Center’s newly launched RFK Project SEATBELT — Safe Environments Achieved Through Bullying prevention, Engagement, Leadership and Teaching respect. The initiative provides resources for parents, educators and community members to create supportive environments through a human rights framework that instills responsibility, respect and resiliency to prevent bullying.
The initiative’s name is our answer to critics who say bullying is ingrained in the culture of an American childhood. To those people, I ask: Who remembers the days when wearing a seat belt was considered optional?
In my father’s lifetime, manufacturers weren’t even required to install seat belts in their vehicles, and it wasn’t until 1984 that riders were required to use them. But when my daughters get in a car today, putting on their seat belts is second nature. In just one generation, we watched a profound shift in social norms related to seat belts. How many people in 1984 said that Americans would never be persuaded to change an ingrained behavior in the name of public safety?
We can change for the better. We do it all the time, and our children are even better at it than we are. Parents, teachers, neighbors, bus drivers — we all can do our part to raise children who see themselves as human rights defenders. In doing so, we’re not just creating safer schools for them but also passing on to them a more just and peaceful world.
***************************
Friday, August 9, 2013
AUTISM UPDATE
Because although far from all persons with Moebius Syndrome have autism, still it can be associated with our condition. What's the latest? Here's some brain talk on it:
*************
A new study indicates that autism may affect men and women differently.
When studying autism, most research tends to be male-biased due to the fact that the condition afflicts more boys than girls - estimates of the condition’s male-to-female ratio range from 5:1 to 15:1.
Given the skewed statistics, fewer girls with autism are included in studies, and most of researchers’ understanding of the neurodevelopmental disorder is based on male test subjects.
In an attempt to provide a more balanced picture of the autistic brain, scientists at the Autism Research Center at the University of Cambridge examined the brains of a 120 patient cohort that was completely gender equal.
The ultimate goal? To see if autism manifests differently in men and women.
“We compared the brains of male patients with and without autism, so we have a pattern to demonstrate how autism manifests in the brain, and then do the same thing for females,” Dr. Meng-Chuan Lai, who led the research project, told FoxNews.com. “So if autism manifests the same for males and females, then the (patterns would be) quite alike. If it manifests differently by gender, then the two patterns would be quite distinct. And that’s what we found.”
Utilizing magnetic resonance imaging (MRI), the researchers scanned and compared the brains of 30 male and 30 female autism patients between the ages of 18 and 49, none of whom had intellectual disabilities. The brain scans were then compared to those of 30 male and 30 female control patients, who were considered typical developing adults.
As expected, the tests found that the brain anatomies of females with autism were substantially different when compared to the brains of their male counterparts. In fact, a completely different set of brain regions were implicated in the male autism brains than in the female autism brains.
The brain imaging revealed that females with autism showed what the scientists referred to as neuroanatomical “masculinization.” meaning areas of the brain that were atypical in adult females with autism were similar to areas that differ between typical developing males and females. This brain difference was not seen in the adult males with autism.
“In terms of brain morphology, females with autism look more alike to typical developing males when they are compared to typical developing females,” Lai said. “So the brain change in females with autism (are) actually shifting towards typical developing males.”
This discovery relates to an idea known as the extreme male brain theory of autism, which hypothesizes that autism is actually an extreme version of the typical male profile. While the Cambridge study was only meant to be observational, Lai said these findings could ultimately point to the physiological mechanisms that drive physical sex differentiation – such as prenatal sex hormones and sex-linked genetic processes.
But more importantly, Lai said their research should serve as a wakeup call for other scientists. According to the latest estimates from the Centers for Disease Control and Prevention, one out of every 88 children in the United States has been identified as having an autism spectrum disorder, and the numbers seem to be on the rise. Given the increasing amount of children with the condition, Lai said it’s important to study girls with autism independently of boys.
“The key message is that researchers should not really assume that what we know about autism in males will always be applicable to females,” Lai said. “We need to pay more attention to the female population, looking at males and females separately and jointly. We have to identify both similarities and differences.”
Simon Baron-Cohen, a professor of developmental psychopathology at Cambridge, served as the senior author for the study, which was published in the journal Brain.
****************************
*************
A new study indicates that autism may affect men and women differently.
When studying autism, most research tends to be male-biased due to the fact that the condition afflicts more boys than girls - estimates of the condition’s male-to-female ratio range from 5:1 to 15:1.
Given the skewed statistics, fewer girls with autism are included in studies, and most of researchers’ understanding of the neurodevelopmental disorder is based on male test subjects.
In an attempt to provide a more balanced picture of the autistic brain, scientists at the Autism Research Center at the University of Cambridge examined the brains of a 120 patient cohort that was completely gender equal.
The ultimate goal? To see if autism manifests differently in men and women.
“We compared the brains of male patients with and without autism, so we have a pattern to demonstrate how autism manifests in the brain, and then do the same thing for females,” Dr. Meng-Chuan Lai, who led the research project, told FoxNews.com. “So if autism manifests the same for males and females, then the (patterns would be) quite alike. If it manifests differently by gender, then the two patterns would be quite distinct. And that’s what we found.”
Utilizing magnetic resonance imaging (MRI), the researchers scanned and compared the brains of 30 male and 30 female autism patients between the ages of 18 and 49, none of whom had intellectual disabilities. The brain scans were then compared to those of 30 male and 30 female control patients, who were considered typical developing adults.
As expected, the tests found that the brain anatomies of females with autism were substantially different when compared to the brains of their male counterparts. In fact, a completely different set of brain regions were implicated in the male autism brains than in the female autism brains.
The brain imaging revealed that females with autism showed what the scientists referred to as neuroanatomical “masculinization.” meaning areas of the brain that were atypical in adult females with autism were similar to areas that differ between typical developing males and females. This brain difference was not seen in the adult males with autism.
“In terms of brain morphology, females with autism look more alike to typical developing males when they are compared to typical developing females,” Lai said. “So the brain change in females with autism (are) actually shifting towards typical developing males.”
This discovery relates to an idea known as the extreme male brain theory of autism, which hypothesizes that autism is actually an extreme version of the typical male profile. While the Cambridge study was only meant to be observational, Lai said these findings could ultimately point to the physiological mechanisms that drive physical sex differentiation – such as prenatal sex hormones and sex-linked genetic processes.
But more importantly, Lai said their research should serve as a wakeup call for other scientists. According to the latest estimates from the Centers for Disease Control and Prevention, one out of every 88 children in the United States has been identified as having an autism spectrum disorder, and the numbers seem to be on the rise. Given the increasing amount of children with the condition, Lai said it’s important to study girls with autism independently of boys.
“The key message is that researchers should not really assume that what we know about autism in males will always be applicable to females,” Lai said. “We need to pay more attention to the female population, looking at males and females separately and jointly. We have to identify both similarities and differences.”
Simon Baron-Cohen, a professor of developmental psychopathology at Cambridge, served as the senior author for the study, which was published in the journal Brain.
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Thursday, August 8, 2013
TIPS FOR A HEALTHIER LIFE
And we're all for that. In this case, the tips come from a host of "Dancing With the Stars", yet! Read on:
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You'd never guess by looking at her now, but less than a year ago Brooke Burke-Charvet was undergoing treatment for thyroid cancer. The diagnosis was a shock for the 41-year-old "Dancing With the Stars" co-host. Newly married to David Charvet, the mom of four was busy juggling her career and blended family when her doctor found a lump.
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You'd never guess by looking at her now, but less than a year ago Brooke Burke-Charvet was undergoing treatment for thyroid cancer. The diagnosis was a shock for the 41-year-old "Dancing With the Stars" co-host. Newly married to David Charvet, the mom of four was busy juggling her career and blended family when her doctor found a lump.
She is now cancer-free,
and the experience reinforced Brooke's belief in the importance of
taking care of yourself -- inside and out. Here's her everyday advice
for eating right, getting fit, and staying grounded.
Focus on what matters
"Dance through the chaos.
Breathe through everything. I've got four kids -- including a
13-year-old going on 30 -- and this is my second marriage. I know
there's not going to be balance in every day, so I don't beat myself up.
I'm an idealist; I strive and dream big. But I focus on the stuff that
really matters, and I let everything else roll off. Truly, truly,
truly."
Keep the romance going
"In our house, with four
kids, it's tough to remember we're a couple, not just people's parents!
We try to have a regular date night, but sometimes it doesn't happen, so
we make sure we connect every week. Maybe it's a lunch. Maybe it's
dinner after the kids fall asleep. Sometimes it's with another couple.
It's just the fact that we got up, got dressed and got out of our
sweats!"
Have a big lunch
"Lunch is usually my
largest meal. I love sushi. Or I'll do a huge salad with mixed greens
and vegetables like cucumbers, and I'm not afraid of avocados. Then I
top it with a really nice piece of salmon or other fish."
Schedule workouts
"Pay for that class, buy
that DVD, commit with a girlfriend. As working women and moms, we make
it to all our meetings, get our kids to every appointment. But you have
to make yourself a priority. Just commit. Write it down. Make a plan. I
try to do my workouts early in the day, after I drop my kids off at
school, so they're just done. I think if you procrastinate your workout,
as evening falls, it's just never gonna happen! Also, I want that
energy. I want that adrenaline."
Eat more asparagus
"I've been baking
asparagus in the oven, which is so yummy and healthy because you don't
need all the oil and it cooks beautifully. You can even put a little
Parmesan on top."
Soak the stress away
"I love a great bath,"
says Brooke. "I explain to my kids, 'I do so many things for you guys, I
just need you to give me 10 minutes.' " Her ingredients for a perfect
dip?
• Zone-out music. "Easy listening, mellow instrumental, no lyrics. Nothing to think about."
• Epsom salts. "I use
them all the time, and you can get them at any drugstore for $5. They're
great for muscle aches and soreness."
• Spa add-ons. "I will
light candles, put on a facial mask and create this whole spa thing at
home. It is just as good as the real deal -- except that I have to keep
the kids out!"
Cook good food
"My husband is French,
and we love to cook and eat flavorful food. We try to eat a
Mediterranean diet -- lots of greens, lots of fish, lots of vegetables.
It's really all about portion control."
Add flavor without fat
"We flavor with salts
and rubs rather than drowning things in sauces. I use a lot of harissa
-- it's a Middle Eastern spice, like a chili paste. It's great on
sandwiches, and it's ideal on vegetables if you just put a little bit of
olive oil in them."
Don't be afraid to indulge
"If your body is really
craving something, you might need it. Last night, my mom came over and
made homemade meatballs and Bolognese, which is so not on the plan. But I
had a couple of meatballs and a little less pasta. Do it in moderation,
then get back on track."
Keep healthy snacks handy
"I keep a smart snack
pack in my SUV. Then my kids aren't running into the gas station and
buying chips. It might contain these foods:
• Fresh fruit and dried, roasted seaweed packs. Which, thank God, my kids eat.
• Nuts. Usually almonds.
• My girlfriend's
popcorn recipe. It's the best in the world -- I make it at home and put
it in baggies. You pop kernels using regular olive oil, not
extra-virgin, then you season with pink Himalayan salt."
Face your fears
"I try to remain neutral
(on DWTS), but I get emotionally connected to a few contestants. Rob
Kardashian was one. When he started he had no confidence, then he
learned to dance and became this stud. It's amazing to see people face
their fears and transform themselves."
Age gracefully
"The 40s are a reality
check. That's when some people are trying to look 25. I would like to
slow down my aging process, but I don't want to look like a pumpkin, all
swollen! I don't want to fill every flaw in my face. A few? (Laughs)
But you have to embrace Mother Nature a little. I'm a woman. I'm a wife.
I'm a mother of four. I don't want to look like a 25-year-old anymore. I
want to be my best healthy self."
Wednesday, August 7, 2013
A GOOD MESSAGE
Carolyn Hax writes a parenting advice column for the Washington Post. And just recently she had a very interesting discussion with a parent---about the importance of not just outward looks, but also of the need for inner beauty, too; something that those of us connected with Moebius Syndrome can really appreciate. Read on:
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Q: We adopted a little girl, and she is very beautiful. I have taken to heart your admonition to center praise around effort and accomplishments and not looks (although I sometimes slip; she really is cute).
My question is: What can I do about comments from people meeting her? [Noting her beauty] is usually one of the first things out of their mouths. And she meets a lot of people; she has a way of making friends with everyone in the store/restaurant/coffee shop just because she’s so outgoing.
Is there a graceful way to demur without being rude, or do we just hope the family emphasis on character has more weight than the entire rest of the world’s comments on her looks?
Raising a Beautiful Child
This is really hard, because people can’t (or won’t) help themselves, and kids do internalize messages they hear daily.
You can send a polite message to people who say she’s beautiful by saying, “Inside and out, thank you.” You can also be patient, because the comments directed to you as though she’s not even there will slow down as she gets older.
And you can hold onto the fact that your influence towers over that of the people she meets, at least until peers take over. That’s not to say every remark you make about her looks needs to be treated as a “slip”; you’d be overcompensating if you never said, “I think you’re beautiful.” But if the bulk of the message is about things she controls — like her effort, her attitude, her manners, her determination, her compassion — then her chief messenger can lay a stable foundation (inner beauty trumps outer) beneath what the world keeps implying (outer beauty rules).
Check out the work of Carol Dweck or read “Nurture Shock,” by Po Bronson and Ashley Merryman, for more on constructive praise.
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Amen!
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Q: We adopted a little girl, and she is very beautiful. I have taken to heart your admonition to center praise around effort and accomplishments and not looks (although I sometimes slip; she really is cute).
My question is: What can I do about comments from people meeting her? [Noting her beauty] is usually one of the first things out of their mouths. And she meets a lot of people; she has a way of making friends with everyone in the store/restaurant/coffee shop just because she’s so outgoing.
Is there a graceful way to demur without being rude, or do we just hope the family emphasis on character has more weight than the entire rest of the world’s comments on her looks?
Raising a Beautiful Child
This is really hard, because people can’t (or won’t) help themselves, and kids do internalize messages they hear daily.
You can send a polite message to people who say she’s beautiful by saying, “Inside and out, thank you.” You can also be patient, because the comments directed to you as though she’s not even there will slow down as she gets older.
And you can hold onto the fact that your influence towers over that of the people she meets, at least until peers take over. That’s not to say every remark you make about her looks needs to be treated as a “slip”; you’d be overcompensating if you never said, “I think you’re beautiful.” But if the bulk of the message is about things she controls — like her effort, her attitude, her manners, her determination, her compassion — then her chief messenger can lay a stable foundation (inner beauty trumps outer) beneath what the world keeps implying (outer beauty rules).
Check out the work of Carol Dweck or read “Nurture Shock,” by Po Bronson and Ashley Merryman, for more on constructive praise.
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Amen!
Monday, August 5, 2013
I WAS GONE OVER THE WEEKEND...
...to Washington, DC, where we had out one face to face meeting of the year of the board of the Moebius Syndrome Foundation. It was a great weekend, and I was glad to spend it with people whom I'm glad to say are both my board colleagues, but also my friends. So, what about our meeting? I can tell you this much:
1] All of us from the meeting came away energized and more determined than ever to keep working for the cause. As my friend and fellow board member Roland Bienvenu always says, it's a labor of love.
2] The Washington DC and Bethesda area will be a terrific area in which to hold the 2014 conference. There's so much to do! Even if you've been to the area before--and let's face it, many have--I guarantee you, you have not exhausted all the things you can do.
3] There are of course many things to do to prepare for conference 2014. I promise all of you, though, that preparations continue apace for it and a lot has already been done. Our hosts in 2014 are of course Jacob and Nina Licht, and they are doing a tremendous job. The preparations will continue, and I think all of you will be impressed with the final outcome.
4] All of us on the board then have been to the hotel where the conference will be. I think it's going to be an excellent venue. It is clean, it is spacious, it's bright, it's cheerful, it's got an excellent staff, and good facilities. It's in an area of North Bethesda that has several good restaurants and other attractions around it, and the hotel is literally a stone's throw from the DC Metro rail line; if you want to go into DC, for example to the National Mall, there's a way to get there from the hotel that won't require a car, and won't cost you an arm and a leg.
Conference 2014 is a little less than a year away now, and I just know it's going to be great. Join us in July 2014!!!
1] All of us from the meeting came away energized and more determined than ever to keep working for the cause. As my friend and fellow board member Roland Bienvenu always says, it's a labor of love.
2] The Washington DC and Bethesda area will be a terrific area in which to hold the 2014 conference. There's so much to do! Even if you've been to the area before--and let's face it, many have--I guarantee you, you have not exhausted all the things you can do.
3] There are of course many things to do to prepare for conference 2014. I promise all of you, though, that preparations continue apace for it and a lot has already been done. Our hosts in 2014 are of course Jacob and Nina Licht, and they are doing a tremendous job. The preparations will continue, and I think all of you will be impressed with the final outcome.
4] All of us on the board then have been to the hotel where the conference will be. I think it's going to be an excellent venue. It is clean, it is spacious, it's bright, it's cheerful, it's got an excellent staff, and good facilities. It's in an area of North Bethesda that has several good restaurants and other attractions around it, and the hotel is literally a stone's throw from the DC Metro rail line; if you want to go into DC, for example to the National Mall, there's a way to get there from the hotel that won't require a car, and won't cost you an arm and a leg.
Conference 2014 is a little less than a year away now, and I just know it's going to be great. Join us in July 2014!!!
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