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- News and Current Events About Autism - NIMH Funds Pitt Researchers To Find Best Treatments For Children With Autism And ADHD Symptoms
http://www.medicalnewstoday.com/articles/112820.php
Researchers at the University of Pittsburgh and the Western Psychiatric Institute and Clinic of UPMC have received $3 million from the National Institute of Mental Health to conduct a national study of the treatment of attention deficit hyperactivity disorder (ADHD) in children with autism spectrum disorders.
"ADHD symptoms are common in children with autism, but children with autism often do not respond well to stimulant medications, the conventional treatment for ADHD," said Benjamin Handen, Ph.D., principal investigator of the study and associate professor of psychiatry and pediatrics at the University of Pittsburgh School of Medicine.
In this 10-week clinical trial, which will start enrolling patients in September, Pitt researchers and colleagues from the University of Rochester and Ohio State University will recruit 144 children ranging in ages from 5 to13 who have autism w! ith ADHD symptoms. The researchers will assess the safety and effectiveness of two treatments: atomoxetine (also know as Strattera), a nonstimulant medication for treating ADHD, and parent management training in which parents learn how to use behavioral interventions as another form of conventional ADHD treatment.
At the close of the trial, the researchers will continue to follow for six months all participants who respond favorably to treatment to examine the safety, effectiveness and tolerability of long-term treatment.
"Existing research on medication and behavioral treatments for children with autism is sparse," noted Dr. Handen. "The findings from this study will provide guidance for doctors and parents on the best treatment options for many children with autism who also have symptoms of ADHD."
the delivery of outstanding patient care. _______________ Bittersweet Farms sows inspiration
Lucas County autism facility serves as model
By GABE NELSON
BLADE STAFF WRITER
On an idyllic spring morning near Whitehouse, the farmers were up and about. One rode a mower across a pasture. Another chopped wood: fragrant cedar and oak. Others were in the stable, tending to and playing with the animals.
It was another day at Bittersweet Farms, a care center for autistic adults and teenagers that has become one of the most influential in the world.
The farm, which recently turned 25, has grown in size and reputation since its first residents moved in during 1983. Similar farms have sprouted up across the country in recent years, many of them calling Bittersweet their inspiration.
"There are a lot of places that say they like to model after us," said Tammy Bolley-Chambers, the farm's director of day programming. "But I'm not aware of an! y place that's quite like us."
At the 80-acre farm in southwestern Lucas County, residents grow corn, tomatoes, pumpkins, gourds, various greens, and grass for hay. Though the farm's goal is largely therapeutic, the crops aren't for show or for play; the corn and hay are fed to the farm's cattle, sheep, and pigs, while the gourds are turned into birdhouses and sold along with the pumpkins at the farm's annual fall harvest festival.
Daniel Everett, who has autism, takes part in hands-on barnyard activities at Bittersweet Farms.
Bittersweet appears like other small farms at first glance, even though all the farm's residents have autism, a developmental disorder that affects social skills and communication.
Beth Meyer, 45, one of the farm's original residents, re-cently chopped and bundled firewood, cheerfully pointing out which type of tree each log came from. The wood collected from the trees on the property is sold to neighbors, as are many of the young animals raised on the farm.
The organization was founded by former Toledo Public Schools teacher Bettye Ruth Kay, who was disappointed with the options for adults with autism. While Ohio's public schools provide services to children with developmental disabilities, the services are cut off when the student turns 22, forcing difficult choices upon people with autism who cannot secure jobs or live independently. For many, the only employment option is working in "sheltered workshops."
Ms. Kay considered workshops repetitive and unfulfilling, Ms. Bolley-Chambers said. Ms. Kay thought life on a farm would allow autistic adults to work and live at their own pace in a more calming environment.
"Bettye's dream was not only integrating them and making them a part of their community, but using farming as a model to show that there's a beginning, middle, and an end to everything," Ms. Bolley-Chambers said. "When the tomatoes grow, we have sandwiches. There's a purpose to everything that we do."
In 1981, the organization bought its 80-acre parcel of land in Swanton Township and two years later opened its doors to 15 residents. Twenty people with autism now live full-time on the farm, with another nine coming during the day on weekdays.
At first, Ms. Bolley-Chambers said, lawmakers questioned the state-funded farm's methods. Medicaid subsidizes the cost of the farm's participants to attend and for its res! idents to live there, with the rest of the farm's funding coming from donations, grants, and from selling crops, wood, crafts, and animals.
"The old standing joke in the early years was that once every week or so, Bettye would have to drive down to Columbus, to the Statehouse, to explain how buying horse feed benefited people with autism," Ms. Bolley-Chambers said. "Back in the '80s, this kind of thing was just unheard of."
Beth Meyer feeds a goat during an open house at Bittersweet Farms near Whitehouse. The farm is 25 years old.
That's not the case anymore. There are similar farms in Kansas, New Hampshire, Florida, Iowa, California, North Carolina, and New Mexico, with others being planned in Connecticut, Massachusetts, Pennsylvania, and New Jersey.
Many of them cite Bittersweet Farms as an inspiration. People who want to start a similar program come from around the world to Bittersweet Farms to learn from the organization's model, Ms. Bolley-Chambers said.
Brita Darany von Regensburg, the founder and president of Friends for Autistic People in Greenwich, Conn., visited Bittersweet Farms three years ago to help develop a plan for a farm. She said she was impressed by her visit, taking home a slew of tips and suggestions on how to start a farm of her own.
She started the group to help people like her 30-year-old daughter, Vanessa, who has profound autism and doesn't speak. Her daughter went through a series of institutions as an adu! lt but was not given enough attention. In one instance, Vanessa was found bruised, leading her caretakers to suspect that an employee of the institution where she was living may have abused her physically. Ms. von Regensburg said she's still not sure what happened. Her daughter couldn't tell anyone.
Ms. von Regensburg said her group is raising money to buy and develop a property in Connecticut. She said she plans to eventually open a farm with space for 20 residents. Her daughter, who now lives at a group home, would be one of them.
Even with farms opening across the country, the demand for autism services continues to outstrip supply because of a rise in the number of children being born with autism. Bittersweet Farms has a waiting list of more than 100 applicants, but there are few openings and little turnover, Ms. Bolley-Chambers said.
While researchers estimated decades ago that 1 in 2,000 children was born with autism,! the most recent studies indicate that 1 in 160 children falls somewhe re on the autism spectrum, according to L. Eugene Arnold, a psychiatry professor and interim director of the Nisonger Center for developmental disabilities at Ohio State University.
Dr. Arnold said he suspects the change reflects both an increase in the incidence of autism and in the likeliness that a case of autism will be diagnosed.
Explanations vary on why more children than ever are being diagnosed with autism, Dr. Arnold said.
Some argue that environmental contaminants such as insecticides, refrigerants, and heavy metals could contribute to autism, he said. Most scientists agree that autism has a genetic aspect, but it might only predispose people to autism, Dr. Arnold said.
"It could be all of these things," he said. "There's just a lot we don't understand."
With ever-rising demand for the services it offers, Bittersweet Farms has grown during the last 25 years. It ! now has locations in Pemberville and Lima and serves about 55 people across the three locations. Most are adults, but the organization also runs summer programs for teenagers to help them transition into adulthood.
Shane Warner, a direct care professional at Bittersweet, ran last year's summer program in Lima, during which students split their time between learning in the classroom and vocational training. He said the goal is to prepare them for the transition to adult life so they might be able to live independently or find competitive employment after they leave the public school system.
But Ms. Bolley-Chambers said Bittersweet plans to expand its facilities so the teenagers will have a place to live if they decide to stay at the farm as adults. The first step will take place in September, when a pair of six-unit "mini-apartment" buildings will be dedicated and named in honor of Ms. Kay, who died of breast cancer in 1996.
In recent years, the farm has added a building for arts and crafts, including a room where residents use looms to weave fabrics for sale, and a greenhouse-like tent where residents grow crops during the winter.
_______________ Strong Decision in Autism Case;
Cutting Edge Autism Research In February 2008, a U.S. District Court in Pennsylvania issued a strong decision on behalf of a child with autism and his mother.
The issues in Tereance D. v School District of Philadelphia include the district's failure to provide FAPE over a period of years, misdiagnosing the child as mentally retarded and emotionally disturbed, misleading the parent about her son's rights to autism services and extended school year services, and more.
Learn about a new research tool to help diagnose autism earlier. Find out if you are eligible to participate in the Early Autism Study or the free research evaluations available from the National Institutes of Health.
Please don't hesitate to forward this issue to other families, friends, and colleagues. _______________________________ NBC's "Days of Our Lives" Addresses Growing Autism Crisis as Head Writer Dena Higley and Autism Speaks Collaborate to Tell Profound Story of Couple Who Discover Their Son Has the Disorder
Dr. Lexie Carver (Renee Jones) and Commissioner Abe Carver (James Reynolds) Learn Their 3-Year-Old Son Has Autism Beginning in the June 24 Episode of “Days of our Lives”
BURBANK, CA (June 10, 2008) – The growing autism crisis – which has recently drawn increasing national attention -- is addressed in a personal manner beginning in the June 24 episode of NBC's daytime drama “Days of our Lives” in an insightful story based on the experiences of the series' head writer, Dena Higley, who, with her husband has raised Commisioner Abe Carver, Dr. Lexie Carver and Theo an autistic child of their own. NBC joins with Autism Speaks, the nation's leading autism advocacy organization, to help convey a message of hope and useful information during the course of the storyline.
In the creative arc to continue through the summer, Dr. Lexie Carver (Renee Jones) and Commissioner Abe Carver (James Reynolds), are told their 3-year-old son, Theo, has autism. The news of Theo's diagnosis is understandably hard for the couple to comprehend, but through the love and support of family and friends, and the love for their son, they learn a lot about their family and how to cope with this tremendous, new challenge.
The Higleys' son, Connor, was diagnosed at age three. Now 19 years old, he recently graduated from high school. Higley and her husband's personal struggles and triumphs of raising a son with autism, plus three other children, are why she is so passionate about sharing her story -- one that hundreds of thousands of other American parents are also currently experiencing.
“We're telling the profound and life-altering story of a child with autism from his parents' point of view,” said head writer Higley. “Their pain, their struggle -- and ultimately, their ability to find life-affirming hope in the midst of learning how to live day to day with this disability. This is a personal story for me...as my husband and I have walked in the shoes Abe and Lexie are now about to walk in.”
"I am thrilled that "Days" has decided to take on this very important topic,” said Bruce Evans, NBC's Senior Vice President of Daytime and Drama Programming. “We are hopeful that this storyline will serve as a resource for our viewers, many of whom have already been touched by this critical issue."
“This storyline realistically portrays the emotional trauma that every family faces when a child is diagnosed with autism, yet it also opens a window for viewers to see the hope and achievements that are possible as a family pulls together," said Alison Singer, Executive Vice President of Communications and Awareness for Autism Speaks. "We are honored to work with 'Days of our Lives' and applaud the show's commitment to shine a bright spotlight on the autism crisis and its effects on the whole family."
In order to share the storyline responsibly, “Days of our Lives” has joined with Autism Speaks, the nation's leading nonprofit organization devoted to autism. The partnership between “Days of our Lives,” whose loyal audience extends across generations for over 42 years, and Autism Speaks will help promote awareness about a disorder that is diagnosed in one in every 150 children in the United States.
Seven-time Emmy-nominated writer, Dena Higley, began her career at “Days of our Lives” in 1985, where she was a staff writer for 19 years. In 2008, she returned to “Days of our Lives” to become head writer.
Higley is married to Mark, her husband of 21 years, and together they have raised four children -- two biological and two adopted. Their eldest, son Connor, was diagnosed with autism at the age of 3. Now 19, Connor drives his own Mustang, has a black belt in Tae Kwon Do, recently graduated from high school and is preparing to go to college in Florida in the fall. Jensen, their second oldest, now 18 years old, is about to enter USC as a theater major. Helio, their third eldest, was adopted in 2003 from Ethiopia at age 8, and is now 13 years old and going into 7th grade. Adelle, the youngest, was adopted from Vietnam at 17 months in 1997 with her right leg missing below the knee and her fingers fused together. She is now a cheerleader, plays volleyball and is graduating from sixth grade. _____________________________ Voted Out Internal Investigation: Alex Gives Statement to District
Source; CBS12 News: http://www.cbs12.com/news/internal_4708193___article.html/voted_investigation.html
The family of a boy voted out of class for bad behavoir testifies in an internal school investigation today. Alex Barton was voted out of his Port St. Lucie Morningside Elementary kindergarten class for acting out. His peers voted 14-to-2 to send him to the principal's office and told the boy why he was disruptive. Alex's mom says he acts out because he is autistic and sufferers from Asperger's Syndrome.
Barton is pushing for the veteran elementary teacher Wendy Portillo to be fired.
The hearing this morning was for Alex to testify to the district's internal affairs over Portillo's future employment with the district.
"He's got a lot of energy as you can see, but he was able to answer the questions they were asking eventually. He's not a typical child you can sit down and have a face to face conversation with," said Barton attorney Jeff Vastola who put the district on notice they intend to sue, "It gives them an opportunity to investigate the claim, and come to us with a possible resolution. If they do that then we can it's a realistic possibility we can work things out with them and we won't have to file a lawsuit."
Many residents and viewers wrote with concerns over the cost of a lawsuit funded by taxpayers.
"Nobody has mentioned money so I don't know what taxpayers would be concerned about. What they should be concerned about as Americans is civil rights violations."said mother Melissa Barton, who is filing a lawsuit against the district, "I am actually hoping there is some sort of justice for Alex for what happened to him. I will make sure this never happens to another child in the St. Lucie School District again."
Barton said she is not primarily seeking monetary damages. She wants autism awareness and training for district employees. Alex plans to return to a different elementary school this fall as a first grader.
No word on when the investigation into Portillo will wrap up, or on when the district will make its decision regarding her employment. _____________________ Coroner: Autistic boy smothered at school
Published: June 20, 2008 at 9:35 AM
MONTREAL, June 20 (UPI) -- A Montreal-area 9-year-old autistic boy was smothered by a restraining weighted blanket at a special needs school, a newly released coroner's report said.
The report said 3-foot-11 Gabriel Poirier was wrapped at least four times in the blanket on April 17 with only his toes sticking out, The Gazette newspaper reported from Montreal.
The boy had made noises and was disturbing his classmates in St. Jean sur Richelieu, southeast of Montreal and was warned twice by the teacher to calm down, the report said.
When he didn't, she wrapped him in the weighted blanket and placed him on his stomach. When she checked on him 20 minutes later, he was blue, the newspaper said.
The boy's father had a news conference Thursday in Montreal to denounce the teacher's actions.
"He was only 53 pounds. He was so small," Gilles Poirier said. "How can they wrap him up like that in a 40-pound blanket? How can this treatment be tolerated?"
The family is preparing a lawsuit against the school, the father said. _________________________ School Leaves Autistic Kids Out Of Yearbook
Parents Say Act Done Intentionally, School Disagrees
POSTED: 1:08 am PD
ROSEVILLE, Calif. -- The parents of twin autistic boys left out of a yearbook are accusing the school of discrimination.Darla Granger said her sons Holden and Hunter were purposely left out of their Roseville, Calif., school yearbook -- along with the rest of the school's special needs children.
"When your own school district and the people that are supposed to be there to support you and your kids and your situation sort of shun you, it is hurtful," Granger said.Holden and Hunter Granger, who are in second grade, are students of the Placer County Board of Education, which assigns special-need students to various schools within the district.
The boys are in a collage photo in the yearbook, but the school's special needs class, including teachers, is missing."I got the book and was excited to look up their class and see their pictures with their names and their teachers, and they weren't in it," Granger said.Darla and her husb! and, Blandon, have filed a complaint with the Placer County Board of Education, but said they aren't taking legal action and would just like to ensure that the class pictures of their children and other special-needs students are included in future yearbooks.
The Placer County superintendent who oversees the special needs program at Quail Glen Elementary said she thinks the incident was an oversight, not a malicious act."I do have a hard time understanding how they could have not noticed that every autistic child from their campus was missing," Darla Granger said.
The boys' father said he doesn't know if the act was intentional but doesn't think care was given to include the children with special needs in the yearbook."I just felt like I needed to speak out," Blandon Granger said. "I feel like we are owed an apology." _______________________ Autistic Boy and Mom Kicked Off Plane
Mother Says Flight Crew Should Have Been More Understanding
By STEPHANIE DAHLE and JONANN BRADY
June 25, 2008
http://abcnews.go.com/GMA/story?id=5238571&page=1
There were no weapons on board or concerns about terrorism, but an American Eagle flight about to take off from the Raleigh-Durham, N.C., airport was turned back to its gate on Monday to remove two passengers.
The culprits? An upset, autistic toddler and his mother.
By all accounts, two-year-old Jarret Farrell wasn't a happy traveler. But his mother, Janice Farrell, who said she tried everything to calm her son, believes there was no reason for the airline to kick them off the plane.
The airline disagrees, saying they were removed primarily because Janice Farrell kept her carry-on bag on the floor in front of her seat, but that Jarret's behavior added to the tense situation.
"The child had been crying and screaming uncontrollably, to the point where the child's well being was in question," American Airlines, the parent company of American Eagle, said in a statement. "Though, ultimately, the parent's violation of FAA regulations was the cause for removal, both situations contributed to an uncomfortable and potentially unsafe atmosphere for our passengers and crew."
But Farrell told "GMA" she allowed the flight attendant to place her bag in an overhead compartment. And, even though Farrell said she explained Jarret's autism to the flight crew, they only made the situation worse by reprimanding and yelling at the toddler.
" kept coming over and tugging his seatbelt to make it tighter, 'This has to stay tight.' And then he was wiggling around and trying to get out of his seatbelt. And she kept coming over and reprimanding him and yelling at him" Farrell told ABC News' Raleigh-Durham affiliate WTVD.
Farrell said that a pilot came into to the cabin and told Jarret, "You have to get in your seat, young man."
Farrell said she started crying then, which just exacerbated Jarret's behavior.
"He just melted down. He saw me getting upset. He was upset. He was on the floor rolling around," Farrell told WTVD.
That's when the pilot turned the plane around and headed back to the terminal, where Farrell and her son were escorted off the plane.
The Farrells, who were on the way to visit family in New Jersey, were originally supposed to takeoff on Sunday, but the flight was cancelled when the plane was on the runway.
Jarret was perfectly fine on that flight, Farrell said, with crew members letting her son walk around the plane and watch his DVD player.
Farrell said that had the flight crew been more patient and understanding, the situation might not have escalated. She suggested that airline flight attendants and other crew members should be trained to deal with special needs children.
This story was originally reported by Ed Crump at ABC News affiliate WTVD.
______________________________ Florida Governor Signs Autism Bill into Law
Source: WCTV, http://www.wctv.tv/news/headlines/19125659.html
Florida Governor Charlie Crist signed historic legislation Tuesday, guaranteeing insurance coverage for autism therapy for very young children.
The therapy is deigned to mainstream children with the disorder and has been a topic talked about quite frequently by former Miami Dolphin quarterback Dan Marino-- whose son also has autism.
For more than a decade -- Marino has been fighting to help other kids-- saying they deserve the same therapy he was able to afford for his son.
"He’s in college, doing well. He is a direct result! of early intervention. He is a direct result of occupational therapies, speech therapies, things you need to do at an early age starting at two years old, maybe younger. Just think about that, he got all those opportunities and I think that’s why he’s where he’s at today,” Marino says.
The insurance coverage is limited to 36-thousand dollars a year with a 200-thousand dollar maximum benefit.
________________________ Priest Bans Autistic Boy From Church
Mom Told She'd Be Sent to Jail if She Brought Autistic Son to Church
BERTHA, Minn. May 19, 2008
A Catholic priest has filed a restraining order against the parents of a severely autistic 13-year-old boy in an effort to keep him from attending the church in Bertha on Sundays.
The Rev. Daniel Walz alleges that Adam Race's unruly behavior endangers others who attend the Church of St. Joseph.
Race's parents have ignored the restraining order, calling it discriminatory, and Carol Race, Adam's mother, was cited by police and is due to appear in court on Monday for violating the order.
"He said that we did not discipline our son. He said that our son was physically out of control and a danger to everyone at church," Carol Race said. "I can't discipline him out of his autism, and I think that's what our priest is expecting."
Carol Race said it all started last June, when Walz and a church trustee visited the Races at their home address the behavior of Adam, who stands taller than six feet and weighs more than 225 pounds.
In an affidavit, Walz said the church "explored and offered many options for accommodations that would assist the family while protecting the safety of parishioners. The family refused those offers of accommodation."
Carol Race said the family of seven, which has attended St. Joseph since 1996, typically sat in the cry room or in the back pew to keep avoid disrupting the services and did not hear a complaint from the parishioners until Walz showed up at their home in June.
Even after the restraining order was served, the family continued going to the church and would leave during the closing hymn to avoid contact with others, Carol Race said.
The Diocese of St. Cloud issued a statement saying the petition was filed "as a last resort out of a growing concern for the safety of parishioners and other community members due to disruptive and violent behavior on the part of that child."
Walz said the boy's behavior worsened over time, telling authorities that Adam has been "extremely disruptive and dangerous" since last summer.
According to Walz, Adam struck a child during mass, nearly knocks elderly parishioners over when he hastily exits the church, spits and sometimes urinates in church and fights when he is being restrained.
He also one time assaulted a girl by pulling her onto his lap and, during Easter mass, ran to the parking lot and got into two vehicles, starting them and revving the engine, Walz alleged.
"There were people directly in front of the car who could have been injured or killed if he had put the car in gear," Walz wrote.
Adam's parents have to sit on him and sometimes tie his hands and feet to get control of him, Walz wrote.
Carol Race has an answer to each complaint.
She said her son makes spitting faces but doesn't spit and acknowledged he has occasional problems with incontinence. She says that she and her husband sit on Adam because their weight calms him down, which is why he pulled the girl onto him.
_________________________ U.S. reports biggest measles outbreak since 2001
By Will Dunham
WASHINGTON (Reuters) - The biggest U.S. outbreak of measles since 2001 is unfolding in 10 states, with at least 72 people ranging from infants to the elderly becoming ill -- most of them unvaccinated, U.S. health officials said Thursday.
The U.S. Centers for Disease Control and Prevention said said none of those who caught the highly contagious viral illness has died, but at least 14 people have been hospitalized, most with pneumonia triggered by measles.
There were 116 cases in 2001, and the last major U.S. outbreak occurred from 1989 to 1991, when 55,000 people got measles and 123 died.
Anne Schuchat, who heads the CDC's National Center for Immunization and Respiratory Diseases, said she expects "many more cases this year than we had in 2001 based on what's going on today."
Public health officials have been stressing the import! ance of immunizing children in the face of increasingly vocal groups who object to vaccines for religious reasons or because they think the shots may cause autism or other problems.
CDC officials said overwhelming scientific evidence points to the safety of the combined measles-mumps-rubella, or MMR, shot and other childhood vaccines.
"We are concerned ... about the population of people who are choosing not to be vaccinated, and whether we may be on the verge of facing larger-scale outbreaks in the United States," said Jane Seward of the CDC's division of viral diseases.
The CDC said most of the measles cases can be traced to 10 people who picked up the disease overseas and then traveled back to the United States, where others became infected. The ages of those sickened ranged from 5 months to 71 years.
GLOBAL PROBLEM
"These cases and outbreaks resulted primarily from failure to vaccinate, many! because of personal or religious belief exemption," the agency s aid in a statement.
The CDC said 64 cases were reported from Jan. 1 through April 25 in Arizona, California, Hawaii, Illinois, Michigan, New York, Pennsylvania, Virginia and Wisconsin.
Eight more confirmed cases -- all involving unvaccinated children in one family who had attended a church gathering in the Seattle area -- have been reported since then in Washington state, the state department of health said Thursday.
Those spreading measles were infected in Switzerland and Israel, both of which have larger outbreaks, as well as in India, Belgium, Italy and likely China and Japan, the CDC said.
"Transmission has occurred in community and health care settings, including homes, child care centers, schools, hospitals, emergency rooms and physicians' offices," it said.
The disease causes fever, cough, redness and irritation of the eyes and a rash. Serious complications include encephalitis and pneumonia that ca! n be fatal. Measles remains a leading cause of death among children in poor countries, killing about 250,000 people a year globally.
Before a vaccine was introduced in 1963, more than half a million people got measles in the United States and 500 died annually. Thanks to the vaccination program, measles is no longer endemic in the United States, and ongoing transmission of the virus was declared eliminated in 2000.
The annual number of cases since then generally has been in the dozens and caused by someone infected in another country. (Editing by Maggie Fox and Xavier Briand)
__________________________ Join us on Sunday, June 8th for the Autism Center of Pittsburgh/AutismLink In Stride Therapeutic Ride
Cost: Only $5/person for 3 full hours!
Location: In Stride Therapeutic Riding
465 Springdale Rd., Eighty-Four, PA 15330
In Stride Therapeutic Ride
PLEASE NOTE: We will do this several times throughout the summer. For safety purposes, no more than 30 children and ! 60 adults can be present. We will try to conduct these events enough over the summer so that anyone who wants to participate will have the opportunity. NO REFUNDS. You MUST pay in advance to complete your reservation at: http://www.autismlinkstore.com/index.asp?PageAction=VIEWPROD&ProdID=160
Family Outing Includes: * 11 a.m. arrival
* Meet the horses -- families can spend time brushing and petting the program horses.
* 12:30 picnic lunch in the field (pack your lunch!)
1:30 - Riding program overview and demonstration
2:00 -- Pony rides for the kids!!!
_____________________________ Legos: A building block in autism therapy
By Marie McCullough Philadelphia Inquirer Staff Writer http://www.philly.com/philly/health_and_science/20080315_Legos_a_building_block_in_autism_therapy.htmlThe Lego raft carrying the Lego castaways approached the Lego island, "chased by raptors."
Lewis Roberts, a 12-year-old from Medford, moved the raft an inch, then another young filmmaker snapped a digital camera. A third boy consulted their script.
"Quiet on the set!" In the sudden silence, the boys let out a raptorlike ROAR.
Lego animation is like a cartoon. The illusion of movement is created with a sequence of slightly different photographs of the colorful plastic brick construction sets.
But this wasn't just fun and games. It was "Dr. Dan's Lego-based Social Development Therapy" - one of the many interventions that have been developed to teach social skills to children with autism.
The eight preadolescent boys who gathered one evening last week in the playroom at the Center for Neurological and Neurodevelopmental Health in Voorhees have been diagnosed with some form of the mysterious malady.
Their weekly hour together under the watchful guidance of three trained adult leaders helps them learn to interact and communicate socially - crucial abilities that are, by definition, impaired by the neurological disorder.
"They're willing to be social creatures - as long as they can get this Lego thing built," said the aptly named Daniel "Dr. Dan" Legoff, the center's pediatric neuropsychologist.
At first glance, the $45 session just looked like a bunch of boys having fun, not surprising since Lego Club members have good language skills and average or above-average intelligence. In contrast, children at the severe end of the autism spectrum may be mute and have catatonic behaviors.
But signs of problems were soon evident. A boy wearing a long-sleeve T-shirt stood amid the hubbub, staring at the floor, obsessively pulling the hem of his shirt - until leader Greg Shugar gently drew him into an activity. At a table, Lily Brown, another leader, helped two boys revise their "script" - a sheet of lined paper covered with angry scratch-outs and scribbles.
Jonathan Shanahan, 13, of Riverton, rocked from foot to foot and acknowledged that earlier that day, in school, he threw a pencil at a classmate.
"He's my archrival," Jonathan declared, holding a winged Lego beast he had created.
Autism is a heartbreaking puzzle. The cause is unknown, although theories abound and genetics seem to play a role. The incidence of autism has increased dramatically over the last few decades, yet no one knows whether this reflects greater awareness and improved diagnosis, or environmental changes, or both.
The encouraging thing, said Mark Mintz, president and founder of the center where the boys were gathered, is that early intervention usually helps: "You can change the developmental biology."
The surest way of doing that is unclear. Countless approaches, techniques and medications - not to mention alternative therapies, special diets and vitamin injections - are available. Few have been subjected to rigorous studies of effectiveness.
In Legoff's opinion, too many popular strategies involve "skillstreaming" - systematically explaining, modeling, and role-playing acceptable social skills to children.
"I found that approach to be, first, boring and painful to go through for the kids. And second, it didn't seem to work," said the psychologist, who has treated children with neurological disabilities for 20 years. "I needed to find something that they could practice but that they would enjoy and be motivated to do."
About 15 years ago, during post-doctoral training in Honolulu, Legoff noticed that his autistic patients, most of them boys, ignored a playroom full of toys - except for Legos.
A hallmark of autism is an obsessive dedication to one or two interests or activities - typically involving taxonomies, mechanical systems, hierarchies.
"A couple kids came with Lego creations they made at home," Legoff recalled. "In the waiting room, these kids started talking to one another, which surprised their parents. These are kids that don't have any friends because they're socially rejected or isolated."
Thus was born the Lego Club.
To force communication and collaboration, Legoff assigned rotating roles. The "engineer's" design had to be acceptable to the "builder," who had to get parts from the "supplier."
Jonathan's year-old group, one of eight at the center in Voorhees, has reached the club's premier level - "master builder" - so now members devote their sessions to producing stop-action videos. These are shown at the Lego Club's annual "film festival," attended by adoring fans (relatives).
"I feel bringing Lewis here has brought him out of himself," said Karen Roberts, mother of one of the filmmakers. "He's loved Legos since he was a tiny kid. But before this, he didn't really socialize a lot."
Lynda Shanahan, Jonathan's mother, said: "I wouldn't say he has dramatically changed since coming here. The diagnosis is like layers: Peel away one problem and another comes up. But I have seen growth. This has helped him get a group of friends where he fits in. It's built his self-esteem."
Legoff - who says he's tried and utterly failed to get freebies from the Lego company - has made modest efforts to popularize his therapy. He has published two studies of its effectiveness in medical journals. He has given presentations to several school districts.
And he has done collaborative research on the methodology with Simon Baron-Cohen, a distinguished psychologist at Cambridge University's Autism Research Centre in England.
In a small study submitted for journal publication, Baron-Cohen and colleagues found Lego therapy more effective than a better-known social skills intervention at reducing autistic behavior. It also was better at improving social interaction on the playground, apart from the therapy group.
"If these findings remain positive , then these approaches could be used in schools and clinic settings to make them widely accessible," the study concluded.
Yet Lego therapy hasn't really caught on, for several reasons. It's more difficult and expensive to do than it may look. It's not suitable for severely autistic children. And it's not based on any particular theory of what is wrong in the autistic brain.
"Because it evolved a-theoretically, it doesn't fit a particular theoretical framework. A lot of professionals don't like that," Legoff said.
Even Bancroft Neurohealth, a Haddonfield treatment organization where Legoff used to work, no longer offers Lego therapy, said Matthew Sharp, principal of Bancroft Elementary and Preschool.
But Sharp tells families about it and refers them to the Voorhees center.
"I think it allows socialization in a unique way," Sharp said. "And when a child has a birthday, now he has friends to invite back to the house, or to a movie night. So all these cool things can emerge from this group." _________________________________
WASHINGTON — Study after study has failed to show any link between vaccines and autism, but many parents of autistic children remain unconvinced. For the skeptics, the case of 9-year-old Hannah Poling shows that they have been right along.
The government has conceded that vaccines may have hurt Hannah, and it has agreed to pay her family for her care. Advocates say the settlement — reached last fall in a federal compensation court for people injured by vaccin! es, but disclosed only in recent days — is a long-overdue government recognition that vaccinations can cause autism.
“This decision gives people significant reason to be cautious about vaccinating their children,” John Gilmore, executive director of the group Autism United, said Friday.
Mr. Gilmore has filed his own claim that his son became autistic as a result of vaccinations.
Government officials say they have made no such concession.
“Let me be very clear that the government has made absolutely no statement indicating that vaccines are a cause of autism,” Dr. Julie L. Gerberding, director of the Centers for Disease Control and Prevention, said Thursday. “That is a complete mischaracterization of the findings of the case and a complete mischaracterization of any of the science that we have at our disposal today.”
Hannah, of Athens, Ga., was 19 months old and developing normal! ly in 2000 when she received five shots against nine infectious diseas es. Two days later, she developed a fever, cried inconsolably and refused to walk. Over the next seven months she spiraled downward, and in 2001 she was given a diagnosis of autism.
Hannah’s father, Dr. Jon Poling, was a neurology resident at Johns Hopkins Hospital at the time, and she underwent an intensive series of tests that found a disorder in her mitochondria, the energy factories of the cells.
Such disorders are uncommon, their effects can be significant but varied, and the problems associated with them can show up immediately or lie dormant for years.
There are two theories about what happened to Hannah, said her mother, Terry Poling. The first is that she had an underlying mitochondrial disorder that vaccinations aggravated. The second is that vaccinations caused this disorder.
“The government chose to believe the first theory,” Ms. Poling said, but added, “We don’t know that she had an underl! ying disorder.”
In a news conference on Thursday, Dr. Edwin Trevathan, director of the National Center for Birth Defects and Development Disabilities at the disease control agency, said, “I don’t think we have any science that would lead us to believe that mitochondrial disorders are caused by vaccines.”
Dr. Trevathan explained that children with mitochondrial disorders often develop normally until they come down with an infection. Then their mitochondria are unable to manufacture the energy needed to nourish the brain. As a result, they regress.
The Poling case has become a flashpoint in the long-running controversy over thimerosal, a vaccine preservative containing mercury. Some people believe that thimerosal is behind the rising number of autism diagnoses. Among them is Lyn Redwood, director of the Coalition for SafeMinds.
Many of the vaccines Hannah received contained thimerosal, and to Ms. Redwood, she! is more proof of thimerosal’s dangers.
The disease c ontrol centers, the Food and Drug Administration, the Institute of Medicine, the World Health Organization and the American Academy of Pediatrics have all largely dismissed the notion that thimerosal causes or contributes to autism.
Five major studies have found no link, and since thimerosal’s removal from all routinely administered childhood vaccines in 2001, there has been no apparent effect on autism rates.
Many of those who believe in an autism-vaccine link dismiss all this evidence, and Hannah’s case fuels their cause.
“Her story is very important because it echoes so many others, and it’s clear that thimerosal played a role,” said Rita Shreffler, executive director of the National Autism Association.
Dr. and Mrs. Poling said Hannah did not prove the case against thimerosal, but Dr. Poling noted that there was no debate that vaccines had risks.
“They’re not safe for everybod! y,” he said, “and one person for whom they proved unsafe happened to be my daughter.”
___________________________________________
Child Abuse By The Government Government rips an autistic boy from his home because it prefers a different treatment than the one offered by the parents.
By Steven Greenhut, Sr. editorial writer and columnist, The Orange County Register
(from Shafer Autism Report)
What kind of society rips a 17-year-old autistic boy from his loving home and places him in a state-run mental institution, where he is given heavy doses of drugs, kept physically restrained, kept away from his family, deprived of books and other mental stimulation and is left alone to rot? Certainly not a free or humane one.
Yet that's exactly what has happened to Nate Tseglin, after a teacher called Child Protective Services, the county agency charged with protecting children from many forms of abuse and given power to remove children from their family homes in certain circumstances. The teacher reported seeing self-inflicted scratches on Nate's body and complained about the doctor-approved arm restraints his parents used to keep Nate from hurting himself. Nate remains in Fairview Developmental Center (formerly Fairview State Hospital) in Costa Mesa, labeled a danger to himself and others, while his parents fight a lonely battle to bring their son back home.
Isn't there anyone out there who can help them? After the complaint, social workers intervened and decided that the judgment of a psychologist who examined Nate's records but never even met the boy trumped a lifetime of treatment and experiences by his parents, Ilya and Riva Tseglin. Without prior notice, "the San Diego Health and Human Services agency social worker, with the aid of law enforcement, forcibly removed a struggling and terrified autistic boy … from his home, while his mother and father, who are Russian Jewish immigrants, and Nate's younger brother stood by helplessly," according to the complaint the parents, who have since moved to Irvine to be near Nate, filed with the court.
The forced removal came after the Tseglins came to loggerheads with the government over Nate's proper treatment. The parents are opposed to the use of psychotropic drugs and argue that Nate has had strong negative reactions to them. They point to success they've had with an alternative, holistic approach that focuses on diet and psychiatric counseling. The government disagreed, so it took the boy away from home and initially placed him in a group home – where he had the same negative reaction to the drugs that his parents predicted would happen.
Of course, once social workers are involved in a family, they are reluctant to relinquish their power – something I've found in every Child Protective Services case I've written about. And even though the court determined "the evidence is clear that the parents have always stood by and tried to help their son," the court sided with the government. That's another common theme from these closed family-court proceedings – the social workers' words are taken as gospel, and the parents are treated like enemies and given little chance to defend themselves.
The details are complicated and discouraging. But, essentially, the parents were cut out of any decision-making regarding their son. They were given only short visits with him. After he ran away from the group home, the government transferred Nate to a mental hospital. The Tseglins say the drugs the hospital gave Nate caused him to have a "grand mal" seizure, and his health has continued to deteriorate while he languishes in a government mental facility. When they visited him over the summer, they found his face swollen. He faded in and out of consciousness and was suffering from convulsions. They believe he has been beaten and are worried about sexual abuse, given that he is housed with the criminally insane.
The Tseglins claim Child Protective Services has told them they have the "wrong set of beliefs" and even threatened to force them to undergo court-ordered psychological evaluation. The agency at one point suspended the parents' visitations as a way "to assist them in coming to grips regarding their son." The Tseglins, as former citizens of the Soviet Union, have good reason to be fearful of the authorities. But they tell me that they experienced nothing of this sort in the former communist nation. If their descriptions are correct, then the Soviets weren't the only ones who know how to create a totalitarian bureaucracy.
The family's legal argument is persuasive: "Riva and her husband have cared for Nate, in their home, for his entire life, until he was dragged kicking and screaming away from his parents. … The court found that it was very impressive that the parents 'were able to maintain Nate in the home for the better part of a decade when he was having some severe behavioral difficulties.' … The court found further that when the parents put Nate on a 'more holistic approach' and ignored the professional opinions, that 'for a period of time, Nate responded very well to that.' Even though Nate subsequently deteriorated, the court found that he fared no differently using the more traditional medical approach.' … "In short, this case turns on value judgments, such as whether it is preferable for Nate to be maintained in his own home, subject t! o occasional physical restraint, surrounded by the love and devotion of his parents and brother, or whether Nate should be placed in a locked facility, subject to occasional physical restraint and constant chemical restraint, surrounded by strangers and a burden to the California taxpayer. … The real issue in this case is that the agency and some medical personnel believe their opinions regarding Nate's treatment are better than the parents' choices, and have sought the judicial intervention to override the parents' decisions regarding their son."
In a free society, individuals and families get to make those judgments and decisions. As the Tseglins argue, "Riva has a right to raise her child, Nate, free from government interference, as long as he is not at risk of physical, sexual or emotional abuse, neglect or exploitation."
Sure, the state can and does intervene when parents are accused of abusing or neglecting their children. There are many problems and injustices even in those cases, but at least it's understandable when the government intervenes to protect a potentially threatened child. But in this case, the state is simply saying that it knows best, that no matter how diligently a boy's parents have worked to provide the best-possible care for him, that officials get the final say. And the government's choice of mandatory incarceration seems harsh and cruel, which shouldn't surprise anyone, given the basic nature of government.
At last check, autism is not a crime. It's time to free Nate Tseglin and return him to the love and care of his parents. ________________________
Melatonin well-tolerated sleep aid in children with autism
Vanderbilt Sleep Disorders Center researchers are reporting that melatonin, an over-the-counter and relatively inexpensive dietary supplement taken for insomnia and jet lag, shows promise in treating children with autism who have difficulty falling asleep.
Beth Malow, M.D., associate professor of neurology and Kennedy Center investigator, and collaborators reviewed clinical data from Vanderbilt Associate Professor of Pediatrics Susan McGrew, M.D., that showed the dietary supplement was safe and well tolerated in her patients. The results are published in the February issue of the Journal of Child Neurology.
The study is the ! largest of its kind, looking at the medical records of 107 children with autism, ages 2-18, who had tried varying dosages of melatonin for insomnia. Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms. Only three of the 107 children studied reported mild side effects.
“Although prospective trials will be needed to determine if melatonin is an effective sleep aid in this population, this study does support that it may be a reasonable treatment option in these children when administered under the care of a physician and combined with behavioral therapies for sleep,” Malow said.
Autism Speaks, in conjunction with the Dana Foundation, is contributing $100,000 over tw! o years to a prospective study led by Malow and McGrew. This study wil l follow how sleep patterns change in children with autism with the introduction of melatonin, as measured by parent reports and a method called actigraphy, which monitors sleep by tracking movements at night via a wristwatch-like device.
Although preliminary, so far all children completing the trial have had improved sleep, improved daytime behavior, and parents report that they are coping better with their child’s autism.
“This has had a big impact on the family,” Malow said.
In addition to McGrew, Malow's collaborators include Karen Adkins, R.N., CCRC, research nurse specialist and project manager; Wendy Stone, Ph.D., professor of Pediatrics and director of Vanderbilt's Treatment and Research Institute for Autism Spectrum Disorders; Lily Wang, Ph.D., assistant professor of Biostatistics, Suzanne Goldman, Ph.D., instructor in Neurology, and Courtney Burnette, Ph.D., assistant professor of Psychiatry. __________________________ Lead Poisoning Can Mimic Autism
We've heard a lot about the recalls for the toys made with lead paint. Lead poisoning can have severe impacts on a child and his or her family.Problems for Noah Breakiron began at nine-months-old. He was often sick and out of control.
"We couldn't go to the grocery store, chur! ch, really anywhere due to the screaming," said Rob, Noah's dad.
Noah was diagnosed with autism, but then the underlying problem was discovered: lead poisoning. Noah had seven-times the upper limit of lead in his body.
"We were shocked," said Lisa Breakiron, Noah's mother. "We were absolutely shocked. Like, lead poisoning? That can't be right."Lisa and Rob couldn't pinpoint how the lead got in Noah's body. But now, his parents believe it might have been from his toys.
"I can tell you when he was a toddler, he was always chewing on stuff," said Rob.Chealation treatments have reduced Noah's lead levels and have made a huge impact."It was really powerful and amazing for us to watch. It was like literally watching a miracle right in front of your eyes," said Rob.
Pediatrician David Berger is Noah's doctor."We have a child here who is virtually indistinguishable from his peers and that! 's certainly not what he was a year or two years ago," said Dr. B erger.
Dr. Berger says a developing brain is much more sensitive to lead exposure. He says universal testing for lead in young kids should be done. It's a blood test doctors stopped doing routinely ten years ago, but one he says parents should ask for.
"This can cause significant long term problems and it's worthwhile checking for," said Dr. Berger."With Noah's level of lead poisoning, if that would have continued, he could have died," said Lisa.
Today, you can't tell that Noah's body is in a battle to remove the lead. He just seems like a typical four year old, and that's good news. Because the symptoms of autism and lead poisoning mimic each other, Noah's parents say they will never know which came first, autism or lead poisoning.
______________________ Grants for Families of Children with Autism
There's no doubt about it: autism is expensive. For some families, though, the cost of autism can be devastating. That's why the National Autism Association has created a grant program specifically for families of children with autism who are in financial crisis.
If you are a family residing in the United States with a child on the autism spectrum aged birth to 18, you may qualify for the grant. The maximum you may request is $1,500. Money from the grant may be applied ONLY to biomedical treatments, supplements or therapies for your child with autism - and the money is paid directly to vendors (not to families).
Similar grants are offered to families by Act-Today for Autism, Autism Family Resources, and United Healthcare Children's Foundation. The important point to note is that money from these grants never goes directly to families - and it may be used only for autism treatments and related costs (not to, for example, keep the house warm in winter).
If you are in search of a grant for autism treatment, these grant opportunities are legitimate resources. Many advertised grant opportunities, however, are not. A Google search will almost certainly lead you to sites and ads for "free grants for autism." Many of these organizations will require you to pay in advance for your "free grants" - an absurd idea, since grant, by their very nature, are "free."
If any agency or individual requests money from you as part of a grant application process, run fast and far. Then, consider reporting that agency or individual to the police.
Do you know of other legitimate grant programs for families coping with autism? If so, please let us know! Know of any to be avoided? Your help is appreciated! _______________ Autism Link Editorial Oddly enough, the other day a post appeared on the popular discussion board "Aspies for Freedom" (http://www.aspiesforfreedom.com/showthread.php?tid=11704) that was just too interesting to NOT share. The post reads like this:
"NTSPEAKS SUED!!!!"
Today i received a legal document signed by 30 lawers global saying they are suing me for $90,000 reasons:
Copyright infringement
Funds Lost
And -1million Worth of Supporters Decline (cant be i got 1 hit per day on that site)
So the semi-popular site http://ntspeaks.org has been closed.
They also said any other websites to use the Autism Speaks Logo's, Phrases, And All Trade Marked Material Against Them Will Receive A Lawsuit As Well."
Say it ain't so!!! Can it be true? Autism Speaks is threatening to sue someone with Asperger Syndrome over a parody of their website?? Because she feels that she doesn't need anyone to speak for her? That she can speak for herself? Is this the definition of irony or what?
We've been watching the thread for quite some time, biting our lip for fear of being sued as well, but..... since it made fark.com (http://www.fark.com/), well I guess the cat's out of the bag. For those of you who are unfamiliar with Fark, it's one of the most popular sites on the internet. It receives literally MILLIONS of hits per day. It contains the most interesting, ridiculous, asinine, amusing and downright silly news from around ! the globe. And well, since the story has been Farked, lots of people are now on the aspie blog commenting about it. And it's fair game to share now.
Fark headline: Autism Speaks, a charity that claims to speak for autistic people sues 14-year-old autistic kid when she starts a parody website about autistic people being able to speak for themselves. K-Mart sucks
Even the Age of Autism (Kim Stagliano) has a hilarious piece on the debacle called, AUTISM SPEAKS IN AMER-REE-CAH! (Think West Side Story). Go to http://www.ageofautism.com/2008/01/autism-speaks-m.html to check it out.
What self-respecting organization would attempt to sue someone with the disorder for which they are supposedly supporting? Follow the thread and read it through the end, and you'll find the most amusing part of the story -- the person they're trying to sue is a teenager. A minor. ! An aspie teen!!!
I hope t hey're not wasting donated dollars on all of these Park Avenue legal fees. Hrm....
I don't know who's doing the public relations work at Autism Speaks, but I'm starting to suspect it's Britney Spears or Paris Hilton? Lindsay Lohan? Maybe they've consulted O.J. Simpson on how to win friends and influence people?
I'm just stunned. Amused. But sadly, not surprised. The saga continues.....
Cindy Waeltermann
AutismLink
____________________________ Autism Link Editorial Andrew is a bright eyed, blonde haired cheerful kid who lights up a room when he walks in. He seems to want to befriend you, to talk to you or make idle chatter, but doesn't quite know how. He still tries. But Andrew is a different Andrew today from the one I knew many years ago.
Andrew has autism. While I knew his mother in high school, we never really crossed paths much until we started socializing in the same circles -- you know, the autism circle. The one that houses all of your friends because you can't stand the friends you used to have with only neurotypical children who complain about the slightest thing while you're thinking, "if you only knew what you had....." And so, if you're anything like me, you embarked on your journey into autism and found solace and friendship in
those who know your li! fe -- those who go through the same thing you do day after day, and who can cheer with you when you say "Ohmigawd he told a lie! Isn't it great?" Tell that to a mom of neurotypical-only children and she'd probably look at you like you had a big booger hanging off the end of your nose. What? Rejoicing over your kid telling a lie? But your autism buds?? They get it.
Cindy, Andrew's mom, is one of my "autism buds." She has been an incredible advocate in our community and seems to have found her niche in educational advocacy. She is constantly learning, yet teaching and helping the rest of us at the same time. She gives back tenfold to the autism community. With a busy life of raising a child with autism (and one without), working outside of the home and inside the home, she still
manages to help others. She's one of those special people who feel a calling to make their! mark on this world by helping those in need. A rarity in these days of "it's all about me."
This week, Cindy taught me a lesson -- one of those lessons that makes you reflect on yourself and your own behavior and DING! goes the lightbulb. This was one of those moments for me and it might be for you too.
Cindy has always wanted Andrew to be included and has advocated for her own son and many others to be included in everything. School activities, social activities -- you name it. She's always been determined that Andrew will NOT be left behind, that he WILL participate and have every opportunity that every other child does. And so, with that in mind, Andrew has participated in just about everything the school offers. After-school activities, projects, fairs -- you name it, he's participated and Cindy has been there every step of the way.
Recently, Andrew participated in a school science fair. He completed his own Fair project in December, followed scientific m! ethods, wrote his own material, recorded data -- the works. On the night of the fair, Cindy and Andrew were there socializing, looking at all of the class projects, and participating in yet another school activity.
The time came for the awards ceremony and as Cindy and Andrew sat in the audience,the 7th grade winners were announced, all of a sudden "ANDREW" boomed over the loudspeaker. HUH? *Blink blink* Are you SERIOUS? Andrew took second place! Not because of pity, not because he had autism and everyone felt badly for him, but because his project was GOOD. Andrew went to the stage and got his trophy, and sat back down in the audience with Mom.
She's still in shock, and so proud of this boy who spoke late, who had behavior problems, sensory problems, communication problems....... the boy who now just took 2nd place in his middle school science fair, just like any other typical chi! ld would do, except he had work 10 times harder to get there.
Cindy told us Andrew's story when she came home from the event, and taught us all a lesson. She wrote:
"While this made his day, please remember that unless we enter our kids in these extracurricular activities, they don't know if they will succeed or not. They have to at least have the chance. All extracurricular activities that are held during or after school and are school affiliated are eligible for ALL the support (provided by the district) that our kids may need. Thinking of track and field for your young runner? How about an Art Fair? Marching Band? JUST DO IT!"
So I looked back at my own behavior, and I realized that I do hold my son back. He doesn't participate in Boy Scouts or clubs or sports. He doesn't want to. But is it him, or is it me? Is it my insecurity that holds him back? Does he really want to participate? Maybe, just maybe, if I were more like Cindy, he would. If I just nudged him a little bit to participate, maybe he'd succeed. Who knows? I never give him the chance. I wonder how many other moms out there are like me, afraid of the behaviors, afraid that he'll fail, that the other kids will bully and torment him, that he will give up and won't succeed. But it's me.
I think that Cindy and Andrew taught me a good lesson, and hopefully you as well, that we should let our kids experience these things. Maybe our own insecurities and pride get in the way of us letting our! kids experience life.
So many times, they sit on the sidelines watching the game, and we let them, instead of letting them play. And they may try and fail, but at least they tried. I guess it's better to try and fail, than to never try at all.
In the words of Mickey Rooney, "You always pass failure on your way to success."
Way to go Andrew. Way to go, Cindy.
Cindy Waeltermann
Director, AutismLink __________________________ Pitt expert goes public to counter fallacy on autism
http://www.post-gazette.com/pg/08031/853618-114.stmThursday January 31, 2008 By Mark Roth, Pittsburgh Post-Gazette
Nancy J. Minshew is finally ready to take off the gloves. After years of sitting back and hoping the science would speak for itself, the director of the University of Pittsburgh's Center for Excellence in Autism Research has decided it's time for her to take a personal stand. Autism is not caused by vaccinations, she says, and those who continue to push that theory are endangering the lives of children and misdirecting the nation's scarce resources for autism research. "The weight of the evidence is so great that I don't think there is any room for dispute. I think the issue is done," said Dr. Minshew, who runs one of nine top autism research centers funded by the National Institutes of Health. "I'm doing this for all the families out there who don't have a child with autism, who have to deal with the issue of 'Do I get a vaccination, or do I not do it and risk my child's life' because they don't understand what the science is saying." By coincidence, her decision to speak out comes on the day that ABC is airing the pilot of a new TV drama, "Eli Stone," in which a young lawyer pursues a lawsuit on behalf of a woman who believes mercury in a vaccine caused her son's autism. The episode, which airs at 10 this evening, upset the American Academy of Pediatrics so much that it asked the network to pull the show. The Walt Disney Co., which owns ABC, declined to do so, but agreed to run a disclaimer that will direct viewers to the federal Centers for Disease Control and Prevention's autism Web site. That site will tell visitors what has been known for several years -- that virtually every mainstream public health and research organization, including the congressionally authorized Institute of Medicine, the CDC and the NIH, says there is no credible link between vaccines and autism.
That has not stopped a determined group of parents, iconoclastic researchers and lawyers from arguing that there is a link and that the government and drug companies have conspired to hide the truth.
"Eli Stone" picks up on that theme, and while ABC asserted that the program presents both sides of the argument, the drama clearly leans toward the vaccine-autism connection.
In real life, the main target of suspicion has been thimerosal, an ethyl mercury preservative that kept vaccines from being contaminated once they started to be used in a doctor's office or clinic.
In the TV drama, it's called "mercuritol," and the Eli Stone character says this during his closing argument to the jury:
"Is there proof that mercuritol causes autism? Yes. Is that proof direct or incontrovertible proof? No. But ask yourself if you've ever believed in anything or anyone without absolute proof. That's called faith."
Adding to the aura of conspiracy surrounding the debate, the script also has the lawyer saying to the jury, "The first lawsuit alleging a connection between tobacco and cancer was filed in 1954, but it took 30 years for a jury to award a single dollar for something we all now accept as patently true."
After watching an advance copy of the program at the Pittsburgh Post-Gazette's request this week, Dr. Minshew said she thought it was well done.
"It's great entertainment," she said. "If it didn't set off this whole other issue, I would think it was cute."
She was particularly perturbed by the tobacco reference in "Eli Stone." The evidence of heart and lung damage from smoking was overwhelming for years before tougher cigarette regulations were enacted, but there is no such parallel in the studies that have alleged that vaccines cause autism.
One of the main pieces of evidence against the vaccine theory, Dr. Minshew said, is that thimerosal has been banned from most childhood vaccines in America since 2001, and yet reported autism rates have continued to increase.
Dr. Eric Fombonne, an autism researcher at McGill University in Montreal, has an even more telling example of that.
In Quebec, children who got vaccines from 1987 to 1991 had about half as much mercury exposure as those in the United States; from 1992 to 1995, they had the same amount; and from 1996 on they had no exposure at all because mercury preservatives were removed. Yet the autism rates in Quebec increased steadily through that entire period, and actually went up faster after the mercury was eliminated.
"A key point in this debate for me," Dr. Fombonne said, "is that we have pumped a lot of money into these studies, and when do you stop pouring money into a theory which has no evidence supporting it?"
There is also the very real risk that parents who are afraid of vaccines won't protect their children against serious childhood diseases and infections, Dr. Minshew said.
In the United Kingdom, the controversy over vaccines and autism has centered more on the MMR (measles-mumps-rubella) vaccine, which does not contain mercury, following a controversial 1998 study in which a researcher claimed the measles part of the vaccine could cause autism.
A year later, more than 100 children were admitted to a Dublin hospital with measles. Seven had to be put on ventilators, and three died.
Dr. Minshew said she can remember when she was an intern 30 years ago, and a teenage girl died after being admitted with bacterial meningitis.
"And that's one of those immunizations we now have," she said. "That would not have happened today. A number of immunizations we have now prevent the deaths I saw as an intern."
One reason that the vaccine theory won't go away, she said, is the painful coincidence that most symptoms of autism show up in the second year of life, at 18 months on average, and that corresponds with the time many vaccinations are given.
When that happens, she said, "you want to blame something. Something horrible has happened to your child, and it did seem to start around that time, so for some people who aren't logical and who are affected, it's understandable that they would blame vaccinations.
"But when it gets to the point that people are seeing conspiracies at the Centers for Disease Control and they're accusing all these scientists and experts of conspiracy ... that's wrong."
In notes she made while watching "Eli Stone," Dr. Minshew wrote: "Co-occurrence does not equal cause," and "one case is not statistics."
Those are views that resonate with Lori McMaster, an attorney and the mother of a 13-year-old son who has autism.
There are two reasons Ms. McMaster knows that her son Ethan didn't get his autism from vaccines. Because he is one in a set of triplets who were born prematurely, the babies were all tracked by the Alliance for Infants project at Children's Hospital of Pittsburgh, and she knew within months of his birth that his development was delayed compared with his siblings.
The other reason, she said, is that all three children got their vaccinations on the same days from the same doctor, and neither Morgan nor Caitlin have autistic symptoms.
Ms. McMaster and her husband, David, who live in Pine, are both active in the autism parents' support group here, and she feels that those who are pushing the vaccine theory "are advocating a position that has not found support in the medical community."
On the other hand, she said it is sometimes natural for parents of autistic children to fight the medical establishment, because over the years, the medical community "has always been the last to get on board with families struggling with autism."
"I think one of the tragedies is that this ongoing debate is causing fissures in the autism community, and I would never want to contribute to that," she said. "We're all already living a tragedy. The sad thing from a parent's standpoint is that we spend so much of our time fighting -- fighting our schools for services and inclusion, fighting for treatment -- that to then have this internal debate is painful."
For Dr. Minshew, it wasn't "Eli Stone" that motivated her to speak out; it was actually a Maryland court ruling late last year in one of the many lawsuits brought by parents against vaccine makers.
In that case, the parents have sued Wyeth Pharmaceuticals, claiming their son became autistic in the 1980s after getting the company's thimerosal-laced vaccines.
In a December ruling, Baltimore Circuit Court Judge Stuart Berger ruled that none of the family's expert witnesses could testify in the case, because their research did not meet prevailing scientific standards.
The witness lineup included some of the most vocal vaccine-theory researchers, including Dr. Mark Geier, a genetic counselor who has published 15 studies on thimerosal. Judge Berger ruled specifically that "Dr. Geier's epidemiological studies purporting to show an association between thimerosal-containing vaccines and autism were not conducted in accordance with generally accepted methods."
Dr. Minshew said the judge agreed with the current scientific consensus that autism is caused by genetic abnormalities that exist before birth.
"I think if every family who has concerns got to read this decision, a lot of this crap would just stop," she said.
_________________ Autism and Divorce Unfortunately, many marriages where there is a child with autism involved, end in divorce. This is a troubling time for anyone to go through alone. The stress of raising a child with autism spectrum disorder can rip apart the best of unions. By request, AutismLink has formed a new yahoo group where parents can discuss marital troubles, divorce, and raising a child(ren) with autism spectrum disorder as a single parent If this applies to you, and you want to find online support, join the group at: http://health.groups.yahoo.com/group/Autism_Divorce ___________________ Mercury's Removal Doesn't Stop Autism's Rise, Study Shows
Cases of the disorder continued to increase in California children from 2004 to 2007, even after a preservative was removed from vaccines.
By Jia-Rui Chong, Los Angeles Times Staff Writer
The prevalence of autism in California children continued to rise after most vaccine manufacturers started to remove the mercury-based preservative thimerosal in 1999, suggesting that the chemical was not a primary cause of the disorder, according to a study released Monday.
The analysis found that from 2004 to 2007, when exposure to thimerosal dropped significantly for 3 to 5 year olds, the autism rate continued to increase in that group from 3.0 to 4.1 per 1,000 children.
"If mercury exposure in vaccines was a major cause of autism, then the number of . . . affected kids should have diminished once they were no longer exposed to thimerosal," said Dr. Robert Schechter, lead author of the study and a medical officer at the state Department of Public Health. "That is not what we found."
The study, published in the Archives of General Psychiatry, is the latest in a series that has investigated the connection between th! imerosal and autism. The vast majority have found no association.
The latest findings failed to convince some parents and advocacy groups, which have long blamed mercury, a neurotoxin, for the disorder.
"This study presents a greatly oversimplified explanation of a very complex problem," said Claire Bothwell, chairwoman of the board at the National Autism Assn., which works on behalf of families with autism. "Rising numbers do not confirm that thimerosal never had a role."
Autism is a severe developmental disorder in which children seem isolated from the world around them. There is a broad spectrum of symptoms, marked by poor language skills and an inability to handle social relations.
Over the last two decades, the number of cases has boomed across the country for still-unexplained reasons. Psychiatrists estimated that 20 years ago there were 0.2 to 0.5 cases for every 1,000 children. Last year, the na! tional Centers for Disease Control and Prevention estimated that there were 6.6 cases per 1,000 schoolchildren, based on a study of 8-year-olds.
The latest study was based on data from the state Department of Developmental Services, which provides services to about 36,000 people with autism and has one of the best reporting systems in the country.
The researchers looked at all reported cases in the state starting with children born in 1989. They found the number of cases per 1,000 children has been steadily increasing from that point to March 2007, the end point of the study.
In a commentary accompanying the study, Dr. Eric Fombonne called the data "a clear and unambiguous test."
"Parents of autistic children should be reassured that autism in their child did not occur through immunizations," wrote Fombonne, a psychiatrist at Montreal Children's Hospital who was not involved in this study. He has provided advice to vaccine manufacturers in the past but has received no rese! arch funding from them, he said.
Steve M. Edelson, an experimental psychologist who is director of the Autism Research Institute, a nonprofit organization in San Diego, said the study, along with evidence from previous research, argued against thimerosal as the major culprit in autism.
But he added that thimerosal may still play some role. Edelson said such large-scale analysis could overlook smaller groups of children, who for whatever reason have a particular vulnerability to mercury.
He said more solid evidence can only come from laboratory studies, such as postmortem analyses of the brains of autistic children.
The National Autism Assn. criticized the study, saying that some children may still be exposed to mercury through either flu shots or trace amounts in other vaccines. The group also said that some vaccines containing thimerosal had expiration dates as late as 2005 and may have been used up to that point.
_____________________________________ "Autism 'Epidemic' Largely Fueled by Special Ed Funding, Shift in Diagnosing" By Mike Stobbe
A few decades ago, people probably would have said kids like Ryan Massey and Eddie Scheuplein were just odd. Or difficult.
Both boys are bright. But Ryan, 11, is hyper and prone to angry outbursts, sometimes trying to strangle another kid in his class who annoys him. Eddie, 7, has a strange habit of sticking his shirt in his mouth and sucking on it.
Both were diagnosed with a form of autism. And it's partly because of children like them that autism appears to be skyrocketing: In the latest estimate, as many as one in 150 children have some form of this disorder. Groups advocating more research money call autism "the fastest-growing developmental disability in the United States."
Indeed, doctors are concerned there are even more cases out there, unrecognized: The American Academy of Pediatrics last week stressed the importance of screening every kid - twice - for autism by age 2.
But many experts believe these unsociable behaviors were just about as common 30 or 40 years ago. The recent explosion of cases appears to be mostly caused by a surge in special education services for autistic children, and by a corresponding shift in what doctors call autism.
Autism has always been diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. For decades, the diagnosis was given only to kids with severe language and social impairments and unusual, repetitious behaviors.
Many children with severe autism hit themselves or others, don't speak and don't make eye contact.
Blake Dees, a 19-year-old from Suwanee, Ga., falls into that group. For the past eight years, he has been in a day program with intense services, but he still doesn't talk, he's not toilet-trained, and he has a history of trying to eat anything - even broken glass.
But he's not a typical case. Click here to read more.
___________________ "Enough of Big Brother" Cindy Waeltermann
Director, AutismLink
Sitting in my living room watching the news is usually a relaxing thing for me. I catch up with what's going on in the world, have a cup of coffee and relax for a few minutes before I start a hectic day. Today, however, has proven to be kind of irritating. I'm watching as thousands of parents in Prince George's County, MD are being forced to comply with a new school district policy that requires immunization. Luckily they do offer the option of signing a waiver to NOT immunize, but are being forced to either vaccinate or sign a waiver. They have no choice, they must comply or face fines of up to $50 a day and 10 days in jail. If this isn't a scene of Orwellian proportion, I don't know what is.
The Government seems to w! ant to butt into everything in our every day lives. What to eat, what medicines to take, what's safe, what's not safe, what we can own, what we can do. Every day I hear of something else that the Government wants to regulate, ad nauseum, but this one takes the cake.
They tell us when to immunize, they tell us its safe, then its not safe, then, wait, we're not sure if it's safe. We're investigating. We're researching. Hrm. I don't know about you, but I don't like being told what to do, when to do it, how to do it, why to do it, etc. etc., particularly by people who don't seem to have a bloody idea of what they're doing.
I certainly hope that the residents of Prince George's County, MD who have children with autism opt to go to jail. I know I would. It's not that I believe mercury causes autism. It's that I'm not sure, I suspect that maybe it! does, and I'm not willing to take that chance. I don't trust wh at they say, and when it comes to my children, I'd rather err on the side of caution. And who, exactly, is the Government, to tell us that we have to?
Unless Circuit Court Judge Philip Nichols (who, incidentally, is lecturing parents on the necessity of vaccinations) spent time in the labor room giving birth to your child, he has no say in whether you choose to immunize. Who is HE, or anyone else for that matter, to tell you how to raise your child?
I received a letter from my our school district just the other day telling me that I have to prove that my sons have been to the dentist, by state law. I politely wrote on the form that it's none of their business. It's not that they haven't been to the dentist. They have. Several times. It's the audacity of the State to require me to prove that I've been a good little parent that gets my goat. Who are YOU to ask? Who are YOU to tell me what t! o do with my child?
And something as important as immunization? I hope those of you in Prince George's County, MD stand up for your rights. I hope you tell them to buzz off and stop impeding our rights to make decisions as parents. I wish I were there to help you tell Big Brother to go find something else to do. I have a few suggestions:
#1 -- Make sure the districts are following Federal IDEA laws.
#2 -- Find out what's causing autism.
#3 -- Stop spending $500 for hammers.
I could go on, but my political beliefs are not of interest to you, I'm sure. Big Brother needs to go find someone else to pick on, because I think they bit off more than they can chew with parents of children with autism. We're not very nice when we're angry.
_______________________ ScienceDaily (Nov. 14, 2007) - A human stem cell line derived from embryos that were identified by preimplantation genetic diagnosis (PGD) to carry the mutation for fragile X syndrome has provided an unprecedented view of early events associated with this disease. In addition to giving scientists fresh insight into fragile X, results from this unique model system have emphasized the value of this new source of embryonic stem cells and may have a significant impact on the way that genetic diseases are studied in the future.
Fragile X syndrome, the most common cause of inherited mental impairment and of autism, is caused by the absence of the fragile X mental retardation protein (FMRP). Most individuals with fragile X exhibit a specific mutation in the fragile X mental retardation 1 (FMR1) gene that usually coincides with epigenetic DNA modifications. However, the developmental timing and mechanisms associated with acquisition of these characteristics are not clear due to the absence of appropriate cellular and animal models.
To examine developmentally regulated events involved in fragile X pathogenesis, Dr. Nissim Benvenisty and Dr. Rachel Eiges from the Hebrew University Department of Genetics in Jerusalem, Israel, together with Dr. Dalit Ben-Yosef from the IVF unit at the Tel-Aviv Sourasky Medical Center, established a human embryonic stem cell (HESC) line from a preimplantation fragile X-affected embryo identified by PGD. The fragile X cell line, called HEFX, displayed all characteristics typical of an HESC line and possessed the full genetic mutation observed in fragile X patients.
The researchers found that undifferentiated HEFX cells transcribed FMR1 and expressed FMRP, suggesting that the fragile X mutation by itself is not sufficient to cause FMR1 inactivation. The research team went on to show that differentiated derivatives of HEFX cells exhibited a decrease in FMRI transcription and FMRP expression along with an increase in epigenetic modifications associated with fragile X syndrome. "The fact that FMR1 inactivation and other modifications take place after differentiation suggests that it might be possible to prevent some of these events as an attempt to rescue the abnormal phenotype in cells with the full fragile X mutation," suggests Dr. Benvenisty.
HEFX cells represent an excellent model for examination of early embryogenesis and will contribute to a clearer understanding of the molecular mechanisms underlying fragile X pathogenesis. This research is also compelling on a more general level in that it validates the usefulness of HESCs derived from embryos that have been screened for specific mutations with PGD. ESC lines derived in this manner represent a potent tool for the study of a variety of human diseases and the development of new therapeutic strategies.
The research is published in the November issue of the journal Cell Stem Cell, published by Cell Press.
The researchers include Rachel Eiges, Achia Urbach, Amir Eden, Ofra Yanuka, andNissim Benvenisty, of the Silberman Institute of Life Science, The Hebrew University, Jerusalem, Israel; Mira Malcov, Tsvia Frumkin, Tamar Schwartz, Dalit Ben-Yosef, Ami Amit, and Yuval Yaron, of the Tel Aviv Sourasky Medical Center, Sackler Faculty of Medicine, Tel Aviv University, Tel-Aviv, Israel.
Adapted from materials provided by Cell Press _____________________________________________ "Adolescence And Autism: A Difficult, But Not Hopeless Combination"
ScienceDaily (Nov. 3, 2007) — The challenges that autistic patients face become more pronounced during adolescence, a crucial period when many kinds of social behaviours are developed and when these individuals can become more keenly aware of their relationship difficulties. A paper by Dr. Eric Fombonne, Head of the Division of Child Psychiatry at the McGill University Health Centre (MUHC), describes the effectiveness of social skills training groups for autistic adolescents.
"This study shows that the social and interpersonal skills of autistic adolescents can be improved, and we established that our method is efficient and does not require significant resources," said Dr. Fombonne.
Dr. Fombonne organized the first training group in 2002, with his colleagues Jack Strulovitch, social worker at the MUHC, and Vicki Tagalakis, therapist in psychiatry paediatrics at the MUHC. They wanted to address the needs of autistic adolescents who had no major delay in their language development or who were not cognitively challenged (high-functioning autism and Asperger syndrome). Since then the training groups have been running twice a year for 14 sessions, each group involving seven to eight adolescents aged an average of 14.6 years.
The major component of the sessions is role play, which allows the patients to simulate different social situations and create new friendships with other members of the group. Both the adolescents and their parents were asked to fill out peer-validated questionnaires so that researchers can evaluate progress. "These groups were created based uniquely on clinical approach, meaning without the same selection or limitation criteria inherent in research projects. The groups are therefore very representative of what can be done in a classic therapeutic setting," explained Dr. Fombonne.
The study results definitely back up this conclusion, as there was a discernible increase in patients' social skills over the course of the sessions, an improvement that was maintained outside the training groups. This last point proves that behaviour improvement in these patients is not solely tied to the hospital environment. The training has also helped some of the adolescents reduce problems with excessive irritability or sensitivity.
This research is published in the November 2007 issue of the Journal of Autism and Developmental Disorders. ________________________________________
"Ohio Lawmakers Push Autism Coverage Bill"
COLUMBUS, Ohio (AP) — Fully insured health plans would be required to cover diagnosis as well as treatment for autism under an Ohio House bill advocates say would expose autistic children to early treatment that will benefit them the rest of their lives.
The proposal, which has bipartisan sponsors, is modeled after the two-month-old mental health parity law that requires health insurance providers to cover certain psychological conditions. Currently, many health plans cover the diagnosis of autism but not treatment.
"I just feel like taxpayers shouldn't have to pick up the tab," said Tamara Heydt, a mother of two autistic children, 9-year-old Gavin and 11-year-old Garrett. "My insurance should have to pay for it. Insurance companies pay for other neurological disorders. I feel like it's discrimination."
The family spent $60,000 on treatment in one 18-month period.
The Heydts were able to stave off bankruptcy because her children qualified for Medicaid waivers after their diagnosis. The family is insured through Medical Mutual of Ohio.
Joseph Gibbons, director of government relations for Medical Mutual, said his company doesn't cover autism treatment and doesn't believe any employer who buys insurance has ever asked for the coverage.
Insurance industry officials want more details about the House bill, which is being sponsored by Republican Rep. Jon M. Peterson and democratic Rep. Ted Celeste, both of suburban Columbus. Insurance officials are concerned the bill would lead to more mandates based on a disease or health condition.
"Each individual has the belief that their cause is the one that the government needs to find the solution to," said Kelly McGivern, president of the Ohio Association of Health Plans. "We believe employers who buy policies should make the decision."
Continuing treatments, involving such things as speech therapy, a psychologist working on socialization skills and home health aides, aren't covered, said Jacquie Wynn, director of the Center for Autism Spectrum Disorders at Nationwide Children's Hospital. Autistic children, she said, need 30 hours to 40 hours of intervention a week.
Wynn said 30 percent of families who come to the center for treatment leave because they can't afford it.
"There's a cost savings in the reduction of aggressive behavior or the self-care skills they learn," she said. "With short-term, early intervention in their early years, you see the payoff in their lifetime."
________________________________ An awkward childhood, eccentric family, fear overcome, love found, success created -- John Elder Robison, the author of Look Me in the Eye, certainly has the makings of a worthwhile memoir. What is most interesting in reading this book, however, is the tension between the worth of his story and the telling of it.
Robison has Asperger's syndrome, a mild and at one time often undiagnosed form of autism. To read his memoir is an odd experience, given the immediate respect that Robison's accomplishments demand, and the way in which one's ear must adapt to his understandably stilted style of writing.
LOOK ME IN THE EYE
MY LIFE WITH ASPERGER'S
By John Elder Robison
Crown, 288 pages, $25.95
Robison's lack of finesse with language is not only forgivable, but an asset to his story, and therefore readers would do well to overlook any awkwardness around words. His rigid sentences are arguably more telling of his condition than if he had created the most graceful prose this side of Proust.
Some common traits of someone with Asperger's are unease with communicating, intense focus on solitary work and aversion to eye contact. Robison provides a better understanding not just by providing further details of Aspergian tendencies, such as the need to name people and things (Robison names everyone else close to him with his own special moniker), but also by telling his intriguing story.
After leaving home at 16 to create sound and lighting design in the music industry, including for the rock group KISS, Robison goes on to carve out various successful careers, most recently repairing vintage automobiles in Amherst, Mass.
Robison is the older brother by eight years of writer Augusten Burroughs (a changed name, although Robison himself named him "Squirt" and "Varmint"). Burroughs' popular memoir, Running With Scissors, chronicles a childhood with an alcoholic father, psychotic mother and the strange family of the psychiatrist in whose house he often lived. Robison's childhood was vastly different from his brother's, and although he tells of his parents' dissolving marriage, a family tell-all is not what he's aiming for here. It is worth noting that scenes detailing the brothers' relationship are perhaps the most touching of the book. Among them is a casual mention -- a rare soft touch for Robison -- of his little brother's penchant for wearing aluminum foil. The image is priceless. Peppered with anecdotes, from sweet tales of driving Porsches with a doting grandfather to pranks he pulled in corporate America, Robison's goal is to share how he learned to use his natural abilities -- an affinity for machines and electronics -- and overcome or accept his obstacles as someone with Asperger's.
Robison's life, regardless of his condition, is fascinating. The man created a flaming guitar for KISS in the '80s! Readers will be most interested in some of Robison's explanations of everyday obstacles for an Aspergian. His description of an Aspergian's affinity for logic and subsequent trouble with small talk will have readers questioning the worth of 95 percent of their own conversations. He does, however, go on a bit too long at times. He also jumps forward in his life story without enough explanation, and the result can be confusing.
Robison was not diagnosed with Asperger's until he was well into his 40s, already a father and successful business owner. The diagnosis was a revelation, and he reflects on how so many people, doctors among them, had previously misunderstood him.
"I did not ever want to be alone. I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life. The sting of those failures followed me into adulthood, even after I learned about Asperger's."
Embarking on a memoir must have been a difficult decision for Robison. He suffers from frequent bouts of self-doubt, the pain of which he recreates quite well. He may not be a beautiful writer, but he is a remarkably intelligent man who has created an exceptional life for himself, and his story is worth being told. ___________________ "Supreme Court Upholds Parents' Right to Challenge IEPs"
The Supreme Court upheld the Second Circuit Court decision in the case of Board of Education of City of New York v. Tom F., 06-637, thereby affirming parents' statutory right to challenge a school district's Individualized Education Plan (IEP) without first “trying out” the school district's proposed placement. The New York City Department of Education had argued that even if the child's IEP is demonstrably inappropriate, a parent should not have standing to challenge their child's IEP unless the parent has first “tried out” the school district's IEP. Autism Speaks filed an amicus brief in this case, arguing that children with autism have no time to waste "trying out" inappropriate placements. _______________ "OAR Announces New Schwallie Scholarship for Individuals with Autism"
The Organization for Autism Research (OAR) is delighted to announce the Schwallie Family Scholarship, to support qualified individuals with autism or Asperger Syndrome pursuing post-secondary education. Beginning with the spring semester 2008, OAR will present one award of $3,000 in each of three categories: 1) Four-year undergraduate college or university; 2) Two-year undergraduate college, and; 3) Trade, technical or vocational school.
Applications are due by Friday, September 28, 2007.
For more information, visit our Web site by clicking here.
___________________ "Scholarships Available for Ohio Students on the Spectrum" The Hepp Family of Maineville, Ohio, announces the establishment of the Andrew P. Hepp Scholarship Fund, the purpose of which is to grant a $1,000/year scholarship for postsecondary education to a graduating high school senior who has an IEP with a diagnosis of autism, Aspergers, etc. The program was set up with initial funding by the Hepp family in conjunction with the Warren County Foundation, located in Lebanon, Ohio.
The Hepp’s son Andrew was diagnosed with autism in 2000 at age 4, and due to many and various forms of support and intervention is currently doing very well. He is mainstreamed in the local schools and is participating in a number of extracurricular activities, showing the promise of living an independent adult life. The family hopes that through this scholarship program, they can encourage many students with disabilities to further their education so that they may realize their full potential in the adult world.
For further information, contact Cindy Hepp at:
heppcindy@yahoo.com. _________________________
"The Kid-Friendly ADHD and Autism Cookbook:
The Ultimate Guide to the Gluten-Free, Casein-Free Diet"
by Pamela Compart, M.D., and Dana Laake, RDH, MS, LD
_______________ New Ohio Autism Awareness License Plate The new Ohio Autism Awareness License Plate is now available from the Ohio
Bureau of Motor Vehicles! Residents of the state of Ohio can show their support for people with Autism by purchasing this specially designed license plate. Funds raised from sales of the license plate will go directly to the Autism Society of Ohio to continue its work on behalf of people with Autism and their families. To learn more about the Autism Awareness License Plate, please click here. Or, to order the Ohio Autism Awareness License plate directly from the Ohio State BMV, visit the BMV's website by clicking here ______________________________________________________________ Please continue to check this page as we will be adding more news about Autism that may be of interest to you.
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