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Teacher Disciplines Autistic Student with Spray Bottle - Video
WASHINGTON (AP) — Early diagnosis is considered key for autism, but minority children tend to be diagnosed later than white children. Some new work is beginning to try to uncover why — and to raise awareness of the warning signs so more parents know they can seek help even for a toddler.
"The biggest thing I want parents to know is we can do something about it to help your child," says Dr. Rebecca Landa, autism director at Baltimore's Kennedy Krieger Institute, who is exploring the barriers that different populations face in getting that help.
Her preliminary research suggests even when diagnosed in toddlerhood, minority youngsters have more severe developmental delays than their white counterparts. She says cultural differences in how parents view developmental milestones, and how they interact with doctors, may play a role.
Consider: Tots tend to point before they talk, but pointing is rude in some cultures and may not be missed by a new parent, Landa says. Or maybe mom's worried that her son isn't talking yet but the family matriarch, her grandmother, says don't worry — Cousin Harry spoke late, too, and he's fine. Or maybe the pediatrician dismissed the parents' concern, and they were taught not to question doctors.
It's possible to detect autism as early as 14 months of age, and the American Academy of Pediatrics recommends that youngsters be screened for it starting at 18 months. While there's no cure, behavioral and other therapies are thought to work best when started very young.
Yet on average, U.S. children aren't diagnosed until they're about 4½ years old, according to government statistics.
And troubling studies show that white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children, says University of Pennsylvania autism expert David Mandell, who led much of that work. Socioeconomics can play a role, if minority families have less access to health care or less education.
But Mandell says the full story is more complex. One of his own studies, for example, found that black children with autism were more likely than whites to get the wrong diagnosis during their first visit with a specialist.
At Kennedy Krieger, Landa leads a well-known toddler treatment program and decided to look more closely at those youngsters to begin examining the racial and ethnic disparity. She found something startling: Even when autism was detected early, minority children had more severe symptoms than their white counterparts.
By one measure of language development, the minority patients lagged four months behind the white autistic kids, Landa reported in the Journal of Autism and Developmental Disorders.
It was a small study, with 84 participants, just 19 of whom were black, Asian or Hispanic. But the enrolled families all were middle class, Landa said, meaning socioeconomics couldn't explain the difference.
One of the study's participants, Marlo Lemon, ignored family and friends who told her not to worry that her son Matthew, then 14 months, wasn't babbling. Boys are slower to talk than girls, they said.
"I just knew something was wrong," recalls Lemon, of Randallstown, Md.
Her pediatrician listened and knew to send the family to a government "early intervention" program that, like in most states, provides free testing and treatment for young children's developmental delays. Matthew was enrolled in developmental therapy by age 18 months, and was formally diagnosed with autism when he turned 2 and Lemon enrolled him in Kennedy Krieger's toddler program as well. In many of his therapy classes, Lemon says, Matthew was the only African-American.
Now 7, Matthew still doesn't speak but Lemon says he is making huge strides, learning letters by tracing them in shaving cream to tap his sensory side, for example, and using a computer-like tablet that "speaks" when he pushes the right buttons. But Lemon quit working full-time so she could shuttle Matthew from therapy to therapy every day.
"I want other minority families to get involved early, be relentless," says Lemon, who now works part-time counseling families about how to find services early.
For a campaign called "Why wait and see?" Landa is developing videos that show typical and atypical behaviors and plans to ask Maryland pediatricians to show them to parents. Among early warning signs:
—Not responding to their name by 12 months, or pointing to show interest by 14 months.
—Avoiding eye contact, wanting to play alone, not smiling when smiled at.
—Saying few words. Landa says between 18 and 26 months, kids should make short phrases like "my shoe" or "where's mommy," and should be adding to their vocabulary weekly.
—Not following simple multi-step commands.
—Not playing pretend.
—Behavioral problems such as flapping their hands or spinning in circles.
___
EDITOR's NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
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Autism not diagnosed as early in minority children
WASHINGTON — Early diagnosis is considered key for autism, but minority children tend to be diagnosed later than white children. Some new work is beginning to try to uncover why — and to raise awareness of the warning signs so more parents know they can seek help even for a toddler.
"The biggest thing I want parents to know is we can do something about it to help your child," says Dr. Rebecca Landa, autism director at Baltimore's Kennedy Krieger Institute, who is exploring the barriers that different populations face in getting that help.
Her preliminary research suggests even when diagnosed in toddlerhood, minority youngsters have more severe developmental delays than their white counterparts. She says cultural differences in how parents view developmental milestones, and how they interact with doctors, may play a role.
Consider: Tots tend to point before they talk, but pointing is rude in some cultures and may not be missed by a new parent, Landa says. Or maybe mom's worried that her son isn't talking yet but the family matriarch, her grandmother, says don't worry — Cousin Harry spoke late, too, and he's fine. Or maybe the pediatrician dismissed the parents' concern, and they were taught not to question doctors.
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It's possible to detect autism as early as 14 months of age, and the American Academy of Pediatrics recommends that youngsters be screened for it starting at 18 months. While there's no cure, behavioral and other therapies are thought to work best when started very young.
Yet on average, U.S. children aren't diagnosed until they're about 4½ years old, according to government statistics.
And troubling studies show that white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children, says University of Pennsylvania autism expert David Mandell, who led much of that work. Socioeconomics can play a role, if minority families have less access to health care or less education.
But Mandell says the full story is more complex. One of his own studies, for example, found that black children with autism were more likely than whites to get the wrong diagnosis during their first visit with a specialist.
At Kennedy Krieger, Landa leads a well-known toddler treatment program and decided to look more closely at those youngsters to begin examining the racial and ethnic disparity. She found something startling: Even when autism was detected early, minority children had more severe symptoms than their white counterparts.
By one measure of language development, the minority patients lagged four months behind the white autistic kids, Landa reported in the Journal of Autism and Developmental Disorders.
It was a small study, with 84 participants, just 19 of whom were black, Asian or Hispanic. But the enrolled families all were middle class, Landa said, meaning socioeconomics couldn't explain the difference.
One of the study's participants, Marlo Lemon, ignored family and friends who told her not to worry that her son Matthew, then 14 months, wasn't babbling. Boys are slower to talk than girls, they said.
"I just knew something was wrong," recalls Lemon, of Randallstown, Md.
Her pediatrician listened and knew to send the family to a government "early intervention" program that, like in most states, provides free testing and treatment for young children's developmental delays. Matthew was enrolled in developmental therapy by age 18 months, and was formally diagnosed with autism when he turned 2 and Lemon enrolled him in Kennedy Krieger's toddler program as well. In many of his therapy classes, Lemon says, Matthew was the only African-American.
Now 7, Matthew still doesn't speak but Lemon says he is making huge strides, learning letters by tracing them in shaving cream to tap his sensory side, for example, and using a computer-like tablet that "speaks" when he pushes the right buttons. But Lemon quit working full-time so she could shuttle Matthew from therapy to therapy every day.
"I want other minority families to get involved early, be relentless," says Lemon, who now works part-time counseling families about how to find services early.
For a campaign called "Why wait and see?" Landa is developing videos that show typical and atypical behaviors and plans to ask Maryland pediatricians to show them to parents. Among early warning signs:
Not responding to their name by 12 months, or pointing to show interest by 14 months. Avoiding eye contact, wanting to play alone, not smiling when smiled at. Saying few words. Landa says between 18 and 26 months, kids should make short phrases like "my shoe" or "where's mommy," and should be adding to their vocabulary weekly. Not following simple multi-step commands. Not playing pretend. Behavioral problems such as flapping their hands or spinning in circles.
Copyright 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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Autism not diagnosed as early in minority kids
critically acclaimed documentary film about autism by an autistic film director. 'autism reality' is a moving interview-based piece that shows a new and refreshing side of the issue
Original post:
autism reality
Related To Story
John Donvan (l), Caren Zucker
POSTED: 6:42 pm PST February 15, 2012
UPDATED: 7:21 pm PST February 15, 2012
SAN DIEGO -- Most people are familiar with the character Raymond from the hit movie "Rain Man," but most would not know actor Dustin Hoffman based part of his Oscar-winning portrayal of Raymond on San Diego artist Mark Rimland. "He had lunch with Dustin Hoffman back during the making of the film," explained ABC News correspondent John Donvan.Rimland is one of many fascinating figures Donvan and news producer Caren Zucker hope will help change attitudes in their book about autism.Donvan's brother-in-law and Zucker's son have autism. Donvan's role as an ABC News correspondent and Zucker's position as a news producer helped them glean autism stories over the years. However, the book is not about work, it's a labor of love."Nobody knows the back story so we decided to tell that story," said Donvan. "San Diego comes up in the history of autism a lot of times."For example, in the 1960s San Diegan Bernard Rimland, Mark's father, turned the autism world on its ear with research that showed bad mothers were not the cause of autism."That was absolutely, absolutely considered the official version of what was the cause of autism," according to Donvan.Zucker said, "He was every family's hero really because he just sort of said this is, you know, baloney."Their book will introduce readers to the first person diagnosed with autism, Donald Triplett. Triplett is known as "Case One" and is now in his 70s.Donvan and Zucker said because Triplett's Mississippi community accepted him, he thrived. That is what they are hoping their book will inspire."Whatever it takes to let acceptance happen, it can make an enormous impact on the life of somebody with autism," said Donvan."The awareness just makes people much more accepting," added Zucker.Donvan and Zucker were invited to speak Wednesday night by the Stein Education Center, which grew out of the first children's autism program in San Diego.The book is expected to be out in 2013.For more information on the book, visit VistaHill.org.
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San Diego's Part In Autism History Cited In Book
ROBBINSVILLE, N.J.--(BUSINESS WIRE)--
Organizers have announced the routes and start times for the 12thAnnual Ride for Autism taking place Saturday, June 9 at Brookdale Community College in Lincroft, NJ. In its 12th year, the Ride for Autism is a scenic recreational bicycle tour benefitting Autism New Jersey, the largest statewide network of parents and professionals dedicated to improving the lives of people with autism and their families.
Starting and finishing at Brookdale Community College, participants can choose from seven route options this year: 10 mile, 25 mile, 50 mile, 62 mile (metric century), 100 mile, the new 125 mile/double metric century or one mile fun ride. The ride is professionally supported with rest stops and SAG vehicles on all routes. The annual post-ride festival features a vendor expo, catered lunch, kids activities, music from the School of Rock and more. Online registration is open through June 1 at http://www.ride4autism.org. Walk up registrations on the day of the event will also be accepted the morning of the event.
The mission of the Ride for Autism is to raise significant awareness and funds for Autism New Jersey which serves as an invaluable resource for individuals with autism, their families, and the professionals who support them, said Andy Abere, founder and director of the Ride for Autism. With seven different route options, the Ride has a distance for any cyclist who wants to ride and help solve the puzzle of autism. Register or donate today at http://www.ride4autism.org!
The Ride start times are 7:00am - 100 and 125 mile routes; 8:00am - 50, 62 mile routes; 8:00am - 2:00pm Fun Ride; 9:00am - 25 and 10 mile routes. The route maps for the Ride are available to be downloaded to a GPS from the rides website at: http://bit.ly/JSLjDQ. Registered participants are eligible to enter a drawing to win one of two bikes donated by Fuji Bikes (www.fujibikes.com).
Autism Spectrum Disorders (ASDs) are usually diagnosed during the first three years of life and are four to five times more prevalent in boys than in girls. ASDs affect approximately 1 in 88 individuals nationally, and 1 in 49 in New Jersey according to the Centers for Disease Control.
The Ride for Autism is produced by g4 Productions (www.g4events.com). To register, for more information or to make a donation to directly support Autism NJ, visit http://www.ride4autism.org.
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Cyclists Gear Up for The 12th Annual Ride for Autism on June 9th Benefitting Autism NJ
By Denise Mann HealthDay Reporter
TUESDAY, May 29 (HealthDay News) -- Women who develop fevers while pregnant may be more than twice as likely to have a child with autism spectrum disorder or another developmental delay, a new study suggests.
Exactly how, or even if, fevers may increase the risk for autism is unknown, and experts were quick to say women should not panic if they do develop a fever while pregnant because taking fever-reducing medications cuts the risk.
One in 88 children in the United States has an autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention. This is an umbrella term for developmental disorders that can range from mild to severe and that often affect social and communication skills. Little is known about what causes autism or precisely why rates seem to be increasing.
Researchers from the University of California, Davis asked the moms of about 1,100 kids with and without autism spectrum disorder or other developmental delays whether they had the flu or fever during their pregnancies and if they took any medications to treat these illnesses. Their findings were published online in the Journal of Autism and Developmental Disorders.
According to the new data, moms who had a fever from any cause during pregnancy were more than twice as likely to have a child with autism or another developmental delay, when compared with moms who did not run fever during pregnancy. Moms who had the flu during pregnancy were not at greater risk for having children with autism or another developmental delay.
What's more, moms who took fever-reducing medication during pregnancy had similar risks as those moms who did not run a fever during their pregnancy.
"Our study provides strong evidence that controlling fevers while pregnant may be effective in modifying the risk of having a child with autism or developmental delay," study author Dr. Ousseny Zerbo, a postdoctoral researcher with Kaiser Permanente's Northern California Division of Research in Oakland, Calif., said in a university news release. Zerbo was a doctoral candidate with UC Davis when the study was conducted. "We recommend that pregnant women who develop fever take anti-[fever] medications and seek medical attention if their fever persists."
The findings are culled from the Childhood Autism Risks from Genetics and Environment (CHARGE) study. This is the same dataset that recently led to a report that moms who are obese or have diabetes may be at higher risk for having children with autism. The common denominator between diabetes, obesity and fever is inflammation.
"This study puts the spotlight on inflammatory factors as a possible role in autism," said Dr. Y. Jane Tavyev, director of pediatric neurology at pediatric services at Cedars Sinai in Los Angeles. But, she added, "I don't think that this should make people panic about getting sick during pregnancy. Mounting a fever is part of the body's immune response to help kill bacteria and viruses."
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Fever During Pregnancy May Raise Odds for Autism in Offspring
Credit: WSAV
National, state and local autism experts will convene at the "2012 Lowcountry Autism Forum," Saturday, June 16, at Seacoast Church, 750 Long Point Road in Mt. Pleasant, 9:00 a.m. - 4:00 p.m.
By: News Release | WCBD News 2 Published: May 31, 2012 Updated: May 31, 2012 - 3:52 PM
Mt. Pleasant, SC - National, state and local autism experts will convene at the "2012 Lowcountry Autism Forum," Saturday, June 16, at Seacoast Church, 750 Long Point Road in Mt. Pleasant, 9:00 a.m. - 4:00 p.m.
The admission-free event is open to the public. News 2's Carolyn Murray will be the emcee for the morning session. Physicians, therapists and software vendors will also participate in the forum sponsored by the Lowcountry Autism Spectrum Disorders Consortium (LASD) and MUSC Project REX, an outpatient treatment program for children with autism.
Keynote speakers at the forum will include Dr. Joe Horrigan, Assistant Vice President and Head of Medical Research and Leslie Long, Director of Housing and Adult Services, both from Autism Speaks, the nations largest autism science and advocacy organization. Some other speakers are: Dr. Carol Page, Director, South Carolina Assistive Technology Program, USC School of Medicine; Dr. Jane Charles, MUSC Developmental Pediatrician; and Dr. Frampton Gwynette, MUSC Assistant Professor of Psychiatry and founder of Project REX.
The forum will provide valuable research data as well as answers to everyday questions such as how to use an iPhone or iPad to help a child with autism and how to get reimbursement from medicaid/health insurance to pay for Applied Behavior Analysis [ABA], the leading therapy recommended for early intervention. The forum will explore the formation of a lowcountry association of autism therapists.
Autism is a developmental disorder affecting a child's ability to interact with others. It typically appears somewhere between birth and three years of age. There is no known cause, and at present the disorder is incurable; however the condition can be controlled through early diagnosis and treatment. The Center for Disease Control released a study in March showing that 1 in 88 children have some form of the disorder, a 23 percent increase since their last report in 2009.
LASD was established last spring under the pioneering leadership of Dr. Rob Scharstein, a West Ashley father of two adult sons with autism and a retired radiologist. Today, more than 20 local institutions and agencies have linked with the consortium in its mission to heighten autism awareness and support. To enroll in the June 16 forum, visit Lowcountry Autism Forum at http://www.scautism.org. For information call Dr. Scharstein at 843-225-5835. A free lunch will be provided at the forum.
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Autism experts will convene in Mt Pleasant for the 2012 Lowcountry Autism Forum
MetroWest families are invited to celebrate autism awareness at the 12th Annual Kite Day at Bose Mountain on Sunday, April 29.
Festivities from noon to 4 p.m. are sponsored by The Doug Flutie, Jr. Foundation for Autism and the Autism Alliance of MetroWest, a program of Advocates Inc.
The first 500 families will receive free kites, and there will also be free balloons, games, face painting, raffles, character appearances and Framingham Police and Fire vehicles on hand. WODS-FM 103.3 will play music and have giveaways throughout the afternoon, while the police and fire departments will provide fingerprinting to children.
Kite Day allows families whose lives are affected by autism spectrum disorder to network with other families facing the same challenges. It also gives autistic children the chance to participate in a community event.
According to the Flutie Foundation, autism affects one in 88 children in the U.S., and the number of diagnoses continues to climb. April is Autism Awareness Month.
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Autism awareness event in Framingham on April 29
Posted on: 10:58 am, May 7, 2012, by Megan Reuther, updated on: 11:40pm, May 7, 2012
The need for autism services has grown as the number of kids diagnosed with the developmental disorder continues to climb. Autism affects the way people communicate and interact with others. This year, the Centers for Disease Control announced the spectrum of disorders affects one in eighty-eight kids.
A new program in the metro is helping kids overcome the challenges autism presents. Six year-old Alivia Ronesburg likes to swing, likes to play connect four and will let you know when shes ready to move on. She uses a tablet like device to say, Im done when she presses a picture of the phrase. She has trouble communicating and interacting with others.
Mom Alyssan Fitzgerald says, I saw the signs. Fitzgerald says doctors diagnosed Alivia with autism two years ago. She says her daughter wasnt saying many words and had trouble playing with others. She says, We finally had her diagnosed and started looking for resources or places to take her and things that would help us address that.
She brought Alivia to The Homestead in Altoona last fall. She comes for two and a half hours in the morning five days a week. Its part of the new Childrens Autism Project. Director of The Homesteads Youth Community Services Evelyn Horton says, Were the only one of our kind in the state. Although were hoping this is a pilot and we can replicate and have other sites.
Horton says the Childrens Autism Project in an intensive intervention using an approach called Applied Behavior Analysis, or ABA. It uses techniques like positive reinforcement to bring about a change in behavior. She says, Applied Behavior Analysis is the most evidence based, research based approach for treating individuals with autism. Its a learning system.
The clinic room may look like a preschool with kids playing board games and working with teachers, but Horton says its specially designed to teach social interaction. She says, The fact that they can sit close to each other, respond to each other, used shared materials, sometimes let somebody else decide which way were going to put something together or play because rigidity can be a problem.
The Childrens Autism Project also works with the childs teachers, other providers and parents to coordinate care. Fitzgerald says shes already noticed a difference in her daughter. She says, She has gained so many skills. Most important, her eye contact. When you talk to her, shes giving you eye contact. She now says hi and bye to people.
Horton says private insurance and Iowa Medicaid cover the costs. The project started 15 months ago, and Horton says theyre already over capacity for the small clinic. Horton says may add sites in Cedar Rapids and West Des Moines in the future.
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AUTISM PROJECT: New Program Helps Kids
The famed quarterback's foundation raises awareness and provides support for families.
By Stephanie Stephens WebMD the Magazine - Feature
Doug Flutie Sr., 49, reaches his goals on the field and off. "For whatever reason, people have the feeling I can get things done," the Heisman Trophy winner says. Maybe they remember the former quarterback's famous heart-stopping, last-second Hail Mary pass in 1984 to win the Orange Bowl for Boston College.
But for families with children who have autism, Flutie's can-do mojo scores highest with the Doug Flutie Jr. Foundation for Autism. Flutie and his wife, Laurie, established it in 2000 to honor son Doug Jr., known as Dougie, who has childhood disintegrative disorder (CDD), a very rare autism spectrum disorder.
A Canadian study suggests one to six children in 100,000 may have CDD. Like Dougie, they develop normally for at least two years but then lose some or most language, motor, and social skills. Genetics or the body's autoimmune system could play a role, but scientists aren't sure. Dougie, now 20 and 6 feet tall, is termed "low functioning" -- he learns at a very slow pace, says Flutie, but does go to school.
To date, the Fluties have raised more than $13 million to support families affected by autism spectrum disorders, which are among the fastest-growing developmental disabilities in children and adults in the United States. The foundation funds national advocacy, educational, therapeutic, and recreational programs. For National Autism Awareness Month, the foundation's members and other organizations involved with Advocates for Autism of Massachusetts will visit Boston on April 9, the state's Autism Awareness Day, to remind legislators about the importance of critical services and support for families who need them.
Throughout the year, the foundation hosts numerous fund-raisers, some of which Dougie attends. "People really connect with him," says his proud dad. "We give comfort to families so they feel like they're not alone."
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The Flutie Family Tackles Autism, National Autism Awareness Month
When doctors diagnosed Darcie Crawfords 2-year-old daughter with autism, she and her husband were left scrambling to find treatment options. They didn't know where to turn to help Lauren at first.
"It was really devastating. We couldn't even leave the hospital, Darcie Crawford said.
After five years of visits to specialists and out-of-pocket expenses, Crawford was grateful to have found the help she'd been searching for at the Hospital for Special Cares new Autism Center.
Dr. John Molteni, who runs the center, said they try to help parents identify concerns that they have for their child, clarify diagnostics and provide treatment options.
One of the centers goals is to provide help for an underserved population of children with autism, including those whose families have limited resources to access the kind of specialized care they need. Its also a place where parents can get a game plan on how to care for an autistic child.
Hospital for Special Care Unveils New Autism Center
Hospital for Special Care officials said the new autism center will help diagnose patients with autism and lead families toward the best treatment options.
"It would have been so much more helpful had I gotten the diagnosis from someone that could actually point me to treatment and tell me what to do. And I think that's what this offers, Crawford said.
Specialists from the autism center want to reach out to children who need inpatient care.
The Hospital for Special Cares has a plan to open an inpatient facility in the near future and is working to secure funding for the project.
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Autism Center Offers New Options for Families
Newswise — The Vanderbilt Kennedy Center has created a resource with Autism Speaks to help improve sleep for children and teens affected by autism spectrum disorders. This new toolkit, titled “Sleep Strategies for Children with Autism: A Parent’s Guide,” offers strategies to help families whose children with autism have difficulty falling asleep and staying asleep through the night.
Beth Malow, M.D., M.S., Burry Chair in Cognitive Childhood Development and co-developer of the sleep guide, says that sleep is a common struggle for many children with autism. This new sleep guide can help families select ideas that have the best potential to work well with their lifestyle. Developers of the guide say that with consistent routines and persistent effort, families often see changes in their child’s sleep patterns over several weeks.
“My colleagues and I are excited about having the opportunity to develop this parent toolkit for sleep and are appreciative to Autism Speaks for disseminating it to families in need of this information,” Malow said. “Sleep problems in children with autism can be overwhelming for families, and we hope that this information makes a difference in their day-to-day lives.”
A professor of Neurology and Pediatrics and Vanderbilt Kennedy Center Investigator, Malow is an expert on the interface of sleep and neurological disorders and directs the Vanderbilt Sleep Division. She developed the sleep strategies guide with colleague Kim Frank, M.Ed., educational consultant for the Treatment and Research Institute for Autism Spectrum Disorders(TRIAD) at the Vanderbilt Kennedy Center and experts from the Autism Speaks Autism Treatment Network (ATN) and the Autism Intervention Research Network on Physical Health (AIR-P).
The Vanderbilt Kennedy Center has developed other toolkits with Autism Speaks, including “Taking the Work Out of Blood Work” and “Visual Supports and Autism Spectrum Disorder.” These and other resources are available on the Autism Speaks website.
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'Toolkit' Makes Bedtime Less Stressful for Children with Autism
HARTFORD, Conn. — When Caleb Geary was diagnosed with autism at age 3, he had never spoken or eaten solid food.
Now 6, the boy speaks and tests at his first-grade level — progress that his parents attribute to insurance-based services at home and intensive behavioral intervention at the boy's school in Hamden, Conn.
But they worry what will happen to Caleb's diagnosis — and the services that have come with it — if the American Psychiatry Association's proposal to change the definition of autism is adopted.
Lori Geary said she has already fought to get her son the help he needs. Tom Zwicker, Caleb's father and the director of an autism center for the Easter Seals of Coastal Fairfield County, Conn., said he believes insurance companies will start requesting annual diagnostic evaluations if the definition is revised. As a result, his son — and many other children — will lose out on services to treat their conditions.
"You have an entire group receiving services that would be left out in the cold," said Zwicker, who lives in Branford, Conn. "We're going to lose a whole generation of children."
The autism community has been embroiled in a heated debate for the past few weeks over the proposal to dramatically change the criteria for autism diagnosis in the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The DSM-5, scheduled to be published in 2013, is the first revision since 1994.
The revision would create an umbrella category known as "autism spectrum disorder" that would include traditional autism, as well as Asperger's Syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (PDD-NOS) — which currently are considered separate disorders. A new category, social communication disorder, would also be created.
"What became very apparent is that there aren't clear boundaries, and that they really are all on a spectrum," said Darrell Regier, director of research for the APA. The current criteria, he said, is "fuzzy" and as a result, some people have been mislabeled as autistic, while others who need treatment can't get it because their symptoms don't match the current criteria.
"The thing that we tried to do is be a little more clear about the different deficits that these people have," Regier said.
But some experts worry that the revision's main effect will be to drastically reduce the number of people who are diagnosed with autism and who now qualify for services to treat it.
Fred Volkmar, director of the Child Study Center at Yale School of Medicine, is the lead author of a study that found that 44 percent of people previously diagnosed with autism would not meet the proposed new criteria for the diagnosis. The study was based on data collected about individuals in the early 1990s.
"We went back and re-analzyed the data and recoded it," said Volkmar, who was a member of the DSM task force committee but since has resigned. The methodology was "not perfect," Volkmar said, "but I don't think it's horribly bad either."
Periodic revisions and refinements of diagnoses are necessary, he said. "Certainly, you could make (the definition of) Asperger's better. The problem is, how do you justify change and how do you justify major change? It's an interesting discussion."
According to Volkmar's study, to be published in April in the Journal of the American Academy of Child and Adolescent Psychiatry and online later this month, about one-fourth of those diagnosed with autism would not meet the new criteria and nearly three-fourths of those with Asperger's also would not be diagnosed. Also, 84 percent of those diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified also would no longer meet the criteria.
"More and more people are doing better and better, so we have more people who are out and self-sufficient and independent," Volkmar said. "And there's a bit of worry that if you take away services, that that's the group that will suffer, not just in terms of losing a label but in terms of losing services.
"Schools have to do a re-assessment every three years. So in three years' time they say, 'Oh, this kid no longer qualifies.' Is that going to be a rationale for no more services?"
In Caleb's case, Lori Geary said, she and Zwicker spent $600 a week for four hours of daily ABA therapy before insurance started paying for it last year. The outlook for her son before treatment, she believes, was grim: "I fear he'd be in a group home setting for the rest of his life."
The boy couldn't speak. Caleb would explode at changes to his routine. If Geary was driving and made a left turn when he expected a right, there would be "hair pulling, shoes flying, kicking the seat," she said. Caleb's work with a therapist involves positive reinforcement to target impulse control, stimming — repetitive movements — and other behaviors.
"It's how we got him to talk, how we got him to eat, how we got him to sit on a stool at school," said Geary, a senior project manager at Yale's Center for Outcomes Research and Evaluation, which studies the effects of health care. Caleb now gets at-home therapy for two hours nearly every day for his social skills.
With the proposed change to the autism criteria, Geary said, "I'm nervous."
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Possible change in autism definition worries some
THURSDAY, Feb. 23 (HealthDay News) -- Children with autism may benefit from medications to treat children with attention-deficit hyperactivity disorder (ADHD) and other related disorders, but clearer guidelines are needed, a new study shows.
Researchers analyzed data from more than 1,000 U.S. teens enrolled in special education programs, to assess the use of psychiatric medications in those with autism, ADHD and both conditions.
Patients with both autism and ADHD had the highest rates of medicine use (about 58 percent), followed by those with ADHD only (around 49 percent) and those with autism only (about 34 percent), according to study author Paul Shattuck, an assistant professor at Washington University in St. Louis, and colleagues.
Black teenagers with autism only or with autism and ADHD were less likely to receive medications than whites.
"Observations from the present study reinforce the complexity of pharmacologic treatment of challenging behavior in kids with [autism spectrum disorders] and ADHD," Shattuck said in a university news release. "There needs to be a clearer guide for treating kids with both an [autism spectrum disorder] and ADHD."
He noted that drug treatment for autism reflects a trial-and-error approach based on associated symptoms, and there is a poor understanding of overall medication use for children with autism.
"Also striking are the high rates of antipsychotic, antidepressant/anti-anxiety and stimulant medication use in these youths," Shattuck said. "Additional studies examining the treatment of core and associated [autism spectrum disorder] symptoms are needed to guide the treatment of these kids."
It is estimated that one in 110 people have autism, with the majority being boys. Signs of autism include problems with communication and social interactions.
The study appears in the Journal of Child and Adolescent Psychopharmacology.
More information
The U.S. National Institute of Neurological Disorders and Stroke has more about autism.
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Meds for Autism Not Well Understood: Study
Low birth weight affects a child's risk of having an autism spectrum disorder (ASD), according to a study conducted by a Northwestern University researcher.
After studying 3,715 pairs of twins that include one twin with an ASD, Northwestern researcher Molly Losh learned that a weight difference of at least 15 percent or 400 grams made the smaller twin three times more likely to have an ASD.
Losh directs Northwestern's Neurodevelopmental Disabilities Laboratory and teaches at Northwestern's School of Communication.
The twins were born between 1992 and 1995 and are part of the Swedish Twin Registry's Child and Adolescent Twin Study, which is directed by Paul Lichtenstein at Sweden's Karolinska Institute. The twins in Losh's study were the same sex, but included both identical and fraternal pairs.
"This is the first study of its size that links low birth weight with the potential for autism," said Losh. "Looking at twins is a good way to study autism because the unaffected twins serve as the controls."
The causes of autism are complex, but this study gives scientists one more clue, said Losh. "We already knew the genetic link, that you are more likely to have autism if you have a family history of it or have relatives that family members described as 'anti-social' and 'aloof.' This study helps us narrow down the environmental factors. But there are still a lot of unknowns."
ASD is an umbrella term that includes developmental disabilities that can cause "significant social, communication and behavioral challenges," according to the Centers for Disease Control and Prevention. Lack of social interaction is the common thread, although severity ranges from mild to severe.
The syndrome is an equal-opportunity condition, crossing racial, ethnic and socioeconomic lines. Its various forms are four times more common among boys than girls. They affect 1 in 110 children, the CDC said.
Children diagnosed with an ASD are more common today, but the CDC said scientists are not sure if that is due to better diagnoses or an increased rate of the disorders.
Years ago, said Losh, parents were blamed for autism. "Mothers were called 'refrigerator moms' because they were accused of being cold with their babies," she said. "In fact, I see just the opposite. These parents are doing all they can to help these children."
Losh's study will be published in a spring 2012 issue of the journal Psychological Medicine.
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Low birth weight may increase autism risk, study finds
03-02-2012 17:23 New guidelines are redefining what is considered autism, and that has some parents concerned.
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Parents Concerned Over New Autism Guidelines - Video
LOS ANGELES (AP)—Ernie Els is staging his “Els for Autism” golf challenge again, and this time he has backing from SAP, one of his top corporate sponsors.
He describes it as the largest golf charity event in the world, a series of 30 tournaments from April through September, with the final being held Oct. 19-20 at The Gallery Club in Las Vegas for the low net winning team (two players) and any team that raises at least $10,000.
In the first year, the event included 1,700 golfers, 9,000 donors and raised $1.8 million.
“SAP has taken over the golf challenge, so they’ve come in all guns blazing this year, and I think we’re going to have a wonderful time,” Els said. “I think we can double what we did last year.”
The money is going toward a $30 million education and research facility in south Florida for children with autism. Els’ son, Ben, is autistic, and Els has been driven in recent years to help families cope with children with autism and to help find a cure.
Els said with his own money and separate fundraising, he has reached the $9 million mark toward building the center.
“I was struck when I got to the grand finale in Vegas last year,” Els said. “Ninety percent of the people there that played in the challenge, those people’s lives are affected by autism, and a lot of them brought their kids to the event. I met people, numerous families, where the families have three kids, and all three of them have autism at a level where they have to care for their kids. They can’t even go to a school or anything.
“There were some really heart-wrenching moments there,” he said. “We learned. We give back to the autism community, and I think we feel like a big family when we get together there.”
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PRESIDENTIAL FUTURE: Fred Couples wouldn’t mind coming back as U.S. captain at the Presidents Cup for a third time.
A decision for the 2013 matches at Muirfield Village is expected in the next few months. The Americans have won the last two times with Couples at the helm, and with Greg Norman leading the International team. Couples said he has spoken to PGA Tour commissioner Tim Finchem and other tour brass.
“I think I have a very good shot at it, and I would love to do it again,” he said.
For the International side, speculation had shifted toward Nick Price, who wanted to wait until after Norman was captain, especially at Royal Melbourne last year.
Now, however, Ernie Els wonders if the Shark shouldn’t get another turn.
One of the complaints from the International team was it didn’t have enough say in how the matches were run—from picking which format to use on opening day, to how the team is selected (such as number of captain’s picks) to how the course is set up.
That’s the biggest difference from the Ryder Cup, which essentially is a competition between two tours. The Presidents Cup is run solely by the PGA Tour. Norman spoke out against these issues in the final press conference in Australia.
“There’s change coming, and it’s because of him,” Els said. “I feel Greg should get the benefit of these changes.”
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CHAIRMAN FRAZAR: Harrison Frazar gave up golf for a corporate job when he left Texas, unsure whether he wanted to play the game for a living. It won’t be long before he’ll be in a coat and tie at board meetings again, very much vested in golf.
Frazar has been elected chairman of the Players Advisory Council, winning a player election over Scott Verplank and Ben Crane. As head of the 16-player group, that means Frazar in two years will become one of four players on the PGA Tour policy board.
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MATCH PLAY: Ernie Els has had such a love-hate relationship with the Match Play Championship that he didn’t even bother playing in 2004 and 2005. This time, he barely made it. After sitting out last week, Els slipped to No. 65 in the world. The only reason he will get into the first World Golf Championship of the year is because Phil Mickelson is not playing.
Els is desperate to play in such tournaments as he tries to get into the top 50 to avoid missing the Masters.
“There were days when I didn’t even go there. It shows you how times have changed,” Els said. “Now I’m grateful to be in the field. I’ll be playing next week, and I’ve got to play myself into Doral and I’ve got to play myself into the Masters. That’s a nice break coming my way.”
Els wouldn’t have to worry about the Masters if he had won a green jacket. His closest call came in 2004, when he was tied for the lead until Mickelson holed an 18-foot birdie putt on the final hole. Now, he owes one to Mickelson for getting into the Match Play.
“I’ll buy Phil a steak dinner this week at some point,” Els said with a smile. “Maybe send him a good bottle of Bordeaux or something.”
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DIVOTS: The forecast is for a strong wind the opening two days, shifting directions on Friday. … UCLA sophomore Patrick Cantlay didn’t offer much when asked about his future, saying only that he is letting his father sort through the offers and possibilities. … Tim Clark is making his first start of the year. He played only four times last year—the last one as defending champion of The Players Championship—because of a mysterious elbow injury.
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Els to stage another big charity series for autism
TUESDAY, Feb. 14 (HealthDay News) -- When given the opportunity to have screen time, children with autism spectrum disorders typically choose television and video games over social interactive media, such as email, a new study finds .
The preoccupation with video games could interfere with the children's socialization and learning, warned the researchers, whose study appears online in the Journal of Autism and Developmental Disorders.
Autism is a neurodevelopmental disorder characterized by problems with social interaction, communication and restricted interests and behaviors. Autism spectrum disorders, or ASDs, include Asperger syndrome, which is a milder form of autism.
In conducting the study, the researchers analyzed information on more than 1,000 teens in special education classes, including those with autism spectrum disorders, learning and intellectual disabilities, and speech problems.
About 60 percent of the teens with autism spectrum disorders spent most of their time watching TV or videos, the investigators found.
"This rate appears to be high, given that among typically developing adolescents, only 28 percent have been shown to be 'high users' of television," Paul Shattuck, an assistant professor at the Brown School at Washington University in St. Louis, said in a university news release. "Television viewing is clearly a preferred activity for children with ASDs, regardless of symptoms, functional level or family status."
Moreover, 41 percent of the teens with autism spent most of their free time playing video games, the study authors found.
"Given that only 18 percent of youths in the general population are considered to be high users of video games, it seems reasonable to infer based on the current results, that kids with ASDs are at significantly greater risk of high use of this media than are youths without ASDs," Shattuck added.
In contrast, the teens with autism spectrum disorders were less likely to use email or social media.
"We found that 64.4 percent of youth with ASDs did not use email or chat at all," Shattuck said. "Kids with speech and language impairments and learning disabilities were about two times more likely to use email or chat rooms than those with ASDs."
He noted, however, use of social media increased among the teens with autism spectrum disorders as they got older and their cognitive skills improved. Cognitive is a word used to describe brain-based functions such as memory, thinking, learning and processing information.
"This proclivity for screen time might be turned into something we can take advantage of to enhance social skills and learning achievement, especially [with] recent innovations in devices like iPads," Shattuck suggested.
-- Mary Elizabeth Dallas
Copyright © 2012 HealthDay. All rights reserved.
SOURCE: Washington University in St. Louis, news release, January 2012
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Teens With Autism Preoccupied With TV, Video Games: Study