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Thursday January 19, 2012 Reader Supported
AUTISM CALENDAR DEADLINE
For February 2012
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Another Clue in the Mystery of Autism
"Our study of discordant twins -- twin pairs in which only one twin was affected by ASD -- found birth weight to be a very strong predictor of autism spectrum disorder," said Northwestern University researcher Molly Losh. Losh, who teaches and conducts research in Northwestern's School of Communication, is lead author of the study that will be published in the journal Psychological Medicine and is now available online.
Prior twin studies have shown that when one identical twin had ASD, the other twin was much more likely to have ASD than not. "Because identical twins share virtually 100 percent of their genes, this is strong evidence for the role of genetics in autism," said Losh. "Yet it is not 100 percent the case that ASD affects both identical twins in a twin pair."
"That only one twin is affected by ASD in some identical twin pairs suggests that environmental factors may play a role either independently or in interaction with autism risk genes," she added. "And because autism is a developmental disorder impacting brain development early on, it suggests that prenatal and perinatal environmental factors may be of particular importance."
The researchers found that lower birth weight more than tripled the risk for autism spectrum disorder in identical twin pairs in which one twin had ASD and the other did not.
To control for shared genetic and environmental factors, the researchers used a co-twin control study design in which the ASD-affected twin served as the case and the unaffected twin served as the control. They found the risk for autism spectrum disorder rose 13 percent for every 100 gram- (3.5 ounce-) decrease in birth weight.
"There's been a great deal of misinformation about the causes of autism -- from the 1950s misconception that the distant maternal behavior of what were dubbed "refrigerator mothers" was at fault to the ill-informed myth that vaccines can cause autism," said Losh.
Losh and her colleagues' findings add to a growing body of knowledge about the complex causes of autism and suggest that birth weight could be one of the environmental features that interacts with underlying genetic predisposition to autism.
Losh, who directs Northwestern's Neurodevelopmental Disabilities Laboratory, warned that the findings from twin studies might not extend to singletons, as the prenatal and perinatal conditions for twins and singletons differ in important ways.
The researchers studied a population-based sample of 3,725 same-sex twin pairs that were part of the Swedish Twin Registry's Child and Adolescent Twin Study that was directed by Paul Lichtenstein of Sweden's Karolinska Institute. The discordant twins they studied were pairs in which one twin was more than 400 grams (about 14 ounces) or at least 15 percent heavier at birth than the other.
In addition to Lichtenstein, Losh -- the Jane Steiner Hoffman and Michael Hoffman Assistant Professor of Communication Sciences and Disorders -- co-authored "Lower birth weight indicates higher risk of autistic traits in discordant twins," with D. Esserman and P.F. Sullivan (University of North Carolina at Chapel Hill), H. Anckarsater (Lund University, Sweden) and P. Lichtenstein (Karolinska Institute, Sweden).
Disabilities Report Author Is Concerned That Many Kids Have 1 Or No Friends
By: Anne-Marie Tobin, The Canadian Press
Dr Anne Snowdon holds a copy of the national report, Strengthening Communities for Canadian Children with Disabilities, before presenting her key findings and recommendations, in Toronto on Thursday January 19, 2012. THE CANADIAN PRESS/Chris Young.
Toronto - Social interaction and meaningful relationships are hard to come by for children and young adults with certain disabilities, says the author of a study of families in three Canadian cities.
Anne Snowdon released her report on Strengthening Communities for Canadian Children with Disabilities at a conference Thursday after a one-year study funded by Human Resources and Skills Development Canada.
Numerous programs are available, but they can be challenging to access and navigate, said Snowdon, who has a PhD in nursing and is a professor at the University of Windsor's Odette School of Business.
"Communities tend to have more opportunities for children in the zero-to-six, maybe zero- to eight-year-old age range, but when we're working with children who are 18 or 21 or 24, there are many, many fewer opportunities," she said in an interview.
"Our data suggests that the social involvement in communities declines quite sharply as the children get older."
The study involved a survey of 166 families in Fredericton, Regina and Toronto, as well as focus groups made up of eight to 12 participants in each community.
Sixty-three per cent of respondents said they were not satisfied or only somewhat satisfied with the level of community support available to them.
Children and youth represented in the survey had a variety of diagnoses: autism spectrum disorder, global developmental delay, intellectual disability, multiple cognitive and physical disabilities or Down syndrome.
When families were asked to describe their child's friendships with peers, 53 per cent said their child has "no close friends" or only "one close friend."
It's a subject that "really reaches at the heartstrings when you talk to these children and their families," said Snowdon.
"More than half of them had one or had no friends. So that is a very compelling red flag for me, that we need to work harder in our communities to help them maintain and to really build those social networks beyond no friends, and-or just one friend, because we all know nobody really thrives with just one friend."
One parent told Snowdon that it was harder for her daughter to make and maintain friends after about Grade 5 or 6.
"It really, really becomes a challenge. And that's an area we really hope to work very hard on in working with our community and community partners — on finding some innovative ways to strengthen that piece," Snowdon said.
Deborah Barrett is the mother of a 23-year-old son with autism, and agreed that it can be challenging to find community support once kids reach a certain age.
"Once they turn 18 or leave school at 20, if they stay that long, it's like they're dead," said Barrett, director of community awareness and development at the Autism Society of Edmonton Area.
"There's nothing for them in the community. My son, particularly, even with his limited verbal skills, he was very clear he wanted to continue to go on to school."
Snowdon said the study showed that social interaction and connectivity is important for development and quality of life, and many of the children want to be engaged in meaningful social networks.
"One of the very important and useful tools that children themselves are telling us about is how critical it is to be on social networking sites, because they're able to connect with friends, acquaintances, peers, other family members at a distance," she said.
Social networking tools could also connect parents, Snowdon said.
• • •
Umbilical Cord Stem Cells Converted Into Brain Support Cells
James Hickman. (Credit: Image courtesy of University of Central Florida)
ScienceDaily — For the first time ever, stem cells from umbilical cords have been converted into other types of cells, which may eventually lead to new treatment options for spinal cord injuries and multiple sclerosis, among other nervous system diseases.
"This is the first time this has been done with non-embryonic stem cells," says James Hickman, a University of Central Florida bioengineer and leader of the research group, whose accomplishment is described in the Jan. 18 issue of the journal ACS Chemical Neuroscience.
"We're very excited about where this could lead because it overcomes many of the obstacles present with embryonic stem cells."
Stem cells from umbilical cords do not pose an ethical dilemma because the cells come from a source that would otherwise be discarded. Another major benefit is that umbilical cells generally have not been found to cause immune reactions, which would simplify their potential use in medical treatments.
The pharmaceutical company Geron, based in Menlo Park, Calif., developed a treatment for spinal cord repair based on embryonic stem cells, but it took the company 18 months to get approval from the FDA for human trials due in large part to the ethical and public concerns tied to human embryonic stem cell research. This and other problems recently led to the company shutting down its embryonic stem cell division, highlighting the need for other alternatives.
+ Read more.
• • •
New Gene Discovery Unlocks Mystery of Epilepsy in Infants
ScienceDaily — A team of Australian researchers has come a step closer to unlocking a mystery that causes epileptic seizures in babies.
Benign familial infantile epilepsy (BFIE) has been recognised for some time as infantile seizures, without fever, that run in families but the cause has so far eluded researchers. However clinical researchers at the University of Melbourne and Florey Neurosciences Institute and molecular geneticists at the University of South Australia have discovered a gene.
BFIE is a disorder that occurs in previously healthy infants who are developing normally. Seizures commence when a baby is about six months old and stop by the age of two years. BFIE is a rare form of epilepsy with the Australian researchers having studied about 40 families from around the world. Some of the children with this gene abnormality develop an unusual movement disorder later in childhood or adolescence called Paroxysmal Kinesigenic Choreoathetosis (PKC).
This movement disorder causes sudden, brief stiffening or twisting of their muscles as the person starts to move, for instance, people with this condition often have difficulty crossing the road when the traffic lights change to green. While this condition can be easily controlled by medication, it impacts on quality of life and may prevent people from participating in some activities.
+ Read more.
• • •
New Definition of Autism May Exclude Many, Study Suggests
By Benedict Carey, NY Times
Mary Meyer, right, of Ramsey, N.J., said that a diagnosis of Asperger syndrome was crucial in getting her daughter, Susan, 37, access to services that have helped her.
Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and may make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.
The definition is under review by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The D.S.M, as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions.
The study results, presented on Thursday at a meeting of the Icelandic Medical Association, are still preliminary, but they offer the latest and most dramatic estimate of how tightening the criteria for autism could affect the rate of diagnosis. Rates of autism and related disorders like Asperger syndrome have taken off since the early 1980s, to prevalence rates as high as one in 100 children in some places. Many researchers suspect that these numbers are inflated because of vagueness in the current criteria.
“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”Experts working on the new definition — a group that formerly included Dr. Volkmar — strongly questioned the new estimate. “I don’t know how they’re getting those numbers,” said Catherine Lord, a member of the task force working on the diagnosis.
Previous projections have concluded that far fewer people would be excluded under the proposed diagnosis change, said Dr. Lord, director of the Institute for Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill Cornell Medical College, Columbia University Medical Center and the New York Center for Autism.
Disagreement about the effect of the new definition will almost certainly increase scrutiny of the finer points of the psychiatric association’s changes to the manual The revisions are about 90 percent complete and will be final by December, according to Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions.
At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified” — or P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual. Under the current criteria a person can qualify for the diagnosis by exhibiting six or more of 12 behaviors; under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors — a much narrower menu.
Fix to Virginia Autism Measure Sailing Through House
By Wesley P. Hester, Richmond Times Dispatch
The House of Delegates is poised to pass a measure correcting a kink in the autism insurance mandate approved last year designed to provide coverage to young autistic children.
House Bill 1106, introduced by Del. Thomas A. "Tag" Greason, R-Loudoun, sailed through its second reading by the chamber today – the debating stage -- with no opposition. It could be approved Friday.
The legislation gives the Board of Medicine the power it needs to develop licensure regulations for behavioral analysts treating children with autism spectrum disorder.
The bill directs the board to develop the regulations within 280 days and creates a work group of industry experts to help the board with the regulations.
Gov. Bob McDonnell's amendment to last year's autism coverage legislation required behavior analysts to be licensed by the state for their treatment to be covered by insurance, but the attorney general's office concluded that the state Board of Medicine lacked the power.
Greason's bill is emergency legislation, which means it would take effect immediately upon receiving the governor's signature. When the bill clears the House tomorrow, it will move to the Senate.
The legislation passed last year requires health insurers to cover some treatments for autistic children ages 2 to 6, with a cap on annual coverage costs of $35,000. It does not apply to self-insured companies and would exempt businesses with 50 or fewer employees.
• • •
Parents Outraged Over 'Scream Rooms'
After much debate amongst parents and school officials, an elementary school in Connecticut that put students in so-called "scream rooms" for time-outs will no longer use the rooms for some students.
The “scream rooms” at Farm Hill Elementary School in Middletown, Conn., are described as small, windowless spaces where special needs students are reportedly sent to calm down.
However, irate parents argue the rooms are more like solitary confinement and that the screaming that the children in school are hearing is not only distracting, but disturbing and maybe even traumatizing.
On Dr. Drew Friday night, Joseph Haraszti Ph.D., a psychiatrist who specializes in treating children, said the rooms will have a tremendous negative impact on the students who hear the alleged screams.
"They feel helpless," he said. "They feel angry. They feel anxious. It provokes a stress response if they hear this day-in and day-out… what needs to be done is some type of a behavioral assessment of the children to try to identify what are kind of behaviors that trigger the inappropriate response."
Pediatrician Dr. Harvey Karp added, “I think it's crazy that you lock kids in a room by themselves. You know, there are other ways to taken care of kids who have emotional problems or disruptive behaviors… you have to have strategies. Kids are going to be disruptive... you have to have a strategy that's acceptable. It's not acceptable to have a strategy where you lock a kid in a closet because they're misbehaving."
After several complaints, officials now say that the rooms will only be used for children in Individualized Education Programs (IEPs), WFSB-TV reporter Jill Konopka explained to Dr. Drew. Those disruptive students will be placed into a new suite area in the school where officials say walls will be padded and have paned glass so behaviors can be observed from outside the room.
+ Hear more of the debate in the video clip here.
• • •
'Extremely Loud' Movie Sends Autistic Boy On A Sentimental Journey
By Colin Covert startribune.com
After his father dies in the World Trade Center, young Oskar Schell embarks on a New York City walkabout.
Your enjoyment of "Extremely Loud and Incredibly Close" depends on whether you prefer sincerity to authenticity.
The protagonist, Oskar Schell, is a 9-year-old waif with Asperger's whose father died in the World Trade Center. The story (from Jonathan Safran Foer's 2005 bestseller) follows Oskar's therapeutic voyage across New York City, where kindly strangers help him connect a key left by his father with its mysterious lock. The film charts a path of growth through tragedy, as Oskar discovers the world in all its many-splendored glory and ends in a glow of uplift.
Did your heart wrench a bit in your chest? Did you feel a tidal surge of luxurious sentimental warmth? Good for you. Innocent Oskar and his isn't-life-wondrous adventures left me disappointed, depressed and somewhat irritated. The obliteration of thousands of lives on 9/11, the death of Oskar's father, they're just grist for the story. Oskar finds his redeeming triumph over trauma, and that's all that really matters. It feels like too big a price for the payoff.
The film is directed in magic-realist fashion by Stephen Daldry ("The Hours"). With soft focus, impressionistic aerial views and a romantic, Maxfield Parrish color palette, he imbues a gritty city with fairy-tale coziness. It's not in the execution that the film fails but the concept.
The fall of the Twin Towers is irrefutable evidence that the world is a harsh, dangerous place, yet the worst people Oskar encounters are sheep in wolves' clothing. Here and there is a gruff citizen, but no one is wild-eyed or unscrupulous. Really? What may have worked on the pages of a novel collapses before our eyes onscreen.
Young Thomas Horn is a fine actor, especially when his character is in a sour mood, but one gets very tired of Oskar's relentless precocity. As the boy's elderly sidekick, a gimmicky, nonspeaking role that could have been a sentimental deathtrap, Max von Sydow emerges mostly unscathed. The same can't be said for the audience. "Extremely Loud" does everything to compel our tears but feed us into a wringer.
+ Read more.
• • •
A French Film Takes Issue With the Psychoanalytic Approach to Autism
By David Jolly And Stephanie Novak, NY Times.
Paris — “Le Mur,” or “The Wall,” a small documentary film about autism released online last year, might normally not have attracted much attention.
But an effort by French psychoanalysts to keep it from public eyes has helped to make it into a minor cause and shone a spotlight on the way children in France are treated for mental health problems.
The documentary, the first film by Sophie Robert, follows two autistic boys: Guillaume, who has been treated with the behavioral, or “American,” approach; and Julien, who has been kept in an asylum for six years and treated with psychoanalysis. Guillaume, though challenged, is functioning at a high level in school. Julien is essentially silent, locked out of society.
Since Sept. 8, when the film first became available on the Web, it and Ms. Robert, 44, have been the targets of criticism from both the analysts who appear in the film and from within the country’s psychoanalytic establishment. Three of the psychoanalysts whom Ms. Robert interviewed for the film have sued her, claiming she misrepresented them in the 52-minute documentary, which has not yet been screened in cinemas or on television.
On Jan. 26, a court in the northern city of Lille will decide whether Ms. Robert must remove their interviews from the documentary if she wishes to keep screening it. The plaintiffs are also seeking damages of €300,000, or $384,000. The lawsuit might be futile, since the film is widely available on the Web (with English subtitles), having been viewed on YouTube more than 16,000 times. (Ms. Robert argues that the plaintiffs, all of whom appear in the film, signed detailed releases.) Ms. Robert is planning to screen the film in Philadelphia at an autism conference on Jan. 27, the same day the court is to rule. If she wins, a local channel in the north of France, Weo, has agreed to screen it, as has Télévision Suisse Romande, a Swiss channel.
The film makes no pretense of objectivity, juxtaposing interviews with psychoanalysts with scathing criticism of the field’s precepts. Ms. Robert, 44, describes herself as an anthropologist and said she once wanted to be a psychoanalyst herself.
“I would have never imagined what I discovered,” she said of her first few interviews for the film. “Then I thought, wow, what I hear is just crazy."
Christian Charrière-Bournazel, the lawyer for the three plaintiffs — Esthela Solano Suárez, Éric Laurent et Alexandre Stevens — did not respond to requests for comment.
But in court filings, Mr. Charrière-Bournazel said the film had been edited to make his clients look absurd. Ms. Robert, he said, presented the project to the analysts as a documentary, though “it was in reality a polemical enterprise meant to ridicule psychoanalysis in favor of the behavioral treatments that are so fashionable in the United States."
“The film is unfair,” Élisabeth Roudinesco, a French historian of psychoanalysis at the University of Paris VII, said. “It is fanatically anti-psychoanalysis. But I don’t think she’s manipulated the film to make them look ridiculous; rather, I think she chose to talk with very dogmatic psychoanalysts who come across as ridiculous."
+ Read more.
+ Film, youtube, English subtitles here.
• • •
Council Settles Chicago Police Suit Involving Autistic Boy For $525,000
By Hal Dardick Chicago Tribune
The City Council today agreed to pay $525,000 to settle a lawsuit filed on behalf of an autistic boy police allegedly chased and clubbed for no reason at his family’s Little Village restaurant.
The money will go to the Guzman family to benefit Oscar Guzman, who was 16 at the time of the April 2009 incident, and his sister, Nubia, then a college student who allegedly was threatened with arrest for questioning the actions of officers.
Two police officers approached Guzman outside the restaurant, where he was watching pigeons, and then chased him inside after he walked away at the sight of the officers, according to the lawsuit and city officials.
Guzman’s parents shouted to pursuing officers that their son had “special needs,” and Guzman declared himself “a special boy,” but one of the officers pushed the teen’s father out of the way and hit the boy in the head with a retractable club, according to the suit and officials.
Guzman sustained a cut that was closed with eight staples at the hospital.
Officers said they saw the teen reach toward his waistband as he fled into the restaurant, leaving them to believe he had a weapon, officials said. They said one of the officers “inadvertently” hit Guzman with his retractable baton when Guzman pushed him in the chest, Burke said.
Complaints against the officers were sustained by the Independent Police Review Authority, said Leslie Darling, a top city attorney.
The Guzman case resolution was the fifth police abuse case settled by the council since September. The total taxpayer tally would be nearly $5.4 million.
Ald. Edward Burke, 14th, chairman of the Finance Committee and a former cop, suggested Tuesday that such behavior will have no place in the city come May, when the city hosts the back-to-back NATO andG-8 summits.
“There may be 10,000 protesters here,” Burke said. “Just imagine the potential for actions against the city and the possible financial burden that the taxpayers are going to have to confront."
• • •
Autism One And Health Freedom Expo Join Hands
Health Freedom Expo, March 2-4, 2012, Long Beach, CA.
Health Freedom Expo, one of the driving forces of the progressive health movement, and AutismOne will bring to Health Freedom Expo attendees throughout the year and from coast to coast a special program devoted to accurately informing the public about the real biological reasons and effective remediation for autism, with an emphasis on related advocacy issues. The first three-day program of lectures and panels, AutismOne SoCal at Health Freedom Expo, will be held March 2-4, 2012, in Long Beach, CA.
This combined meeting will give leaders of each advocacy arena a chance to synergistically grow ideas and develop common strategies. AutismOne thanks Tim Bolen of the Bolen Report <www.bolenreport.com> for his forward-thinking insight in facilitating this auspicious collaboration.
Teri Arranga, AutismOne’s director said: “We are delighted to be joining forces with a movement that is vital to the future of this country. Health Freedom Expo has a distinctive record of leadership, providing essential information for thousands of individuals.” Arranga continued: “We are at a tipping point. All of us must come together, or there will be no tomorrow. Our country cannot survive the exploding growth in the rate of autism that is now 1 in every 45 boys in many states. We have answers, and we are proud to present them and be a part of Health Freedom Expo."
“It’s not like it’s seen on TV,” said Laura Rowley, AutismOne’s associate director, who continued, “Autism is screams of agony in the middle of the night, seizures during the day, endless fear, and walking a tightrope that puts parents at odds with a dysfunctional school system, a public health system in denial, and doctors who would further harm their children." To learn the good news about children getting better and staying healthy, join us at the Health Freedom Expo. For more information and to register, please visit www.HealthFreedomExpo.com. For more information about AutismOne, please visit www.autismone.org.
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