________________________________________________________________
Saturday,
August 15,
2009
Vol. 13 No. 85
RESEARCH
Hospital Gets $3 Million To Hunt For ‘Fingerprint’ Of Autism
PUBLIC HEALTH
Death From Preventable Medical Injuries Approaches 200,000 Per Year
TREATMENT
Couple Debuts Autism Iphone App
The Expense of Eating With Celiac Disease
PEOPLE
Eunice Kennedy Shriver's Faithful Service
NY School Bus Matron Accused Of Abusing 8-year-old
NY Family Mourns Autistic Teen's Drowning
EDUCATION
Corporal Punishment in U.S. Schools
Trent U. Participating In Autism And Bullying Research
EVENTS
Registration is Open: Hear Top Experts on Effective Autism Treatments
COMMENTARY
Could Endocrine-Disrupting Chemicals in Vaccines Cause Autism?
RESEARCH
Hospital Gets $3 Million
To Hunt For ‘Fingerprint’ Of Autism
By Ben Young Landis, sciencedude.freedomblogging.com, bit.ly/yTcFR
Children’s Hospital of Orange County (CHOC) has received a large federal grant to hunt for the ‘genetic’ fingerprint of autism — a search that, if successful, could lead to a simple test to diagnose a disease that afflicts tens of thousands of Californias.
The $3 million NIH study will be led by Philip Schwartz, a well-known CHOC stem cell researcher. New technology now makes it possible to create stem cells from simple skin biopsies. No embryonic stem cells are involved. Schwartz’s team can create a “bank” of autism stem cells for use in research.
The California Department of Developmental Services says there are at least 38,000 autism patients in the state, a figure based on people who receive services at state-funded centers.
Dr. Philip Schwartz has published stem cell research in the journal Nature.
Currently, there is no lab test for autism, a developmental brain disorder. But Schwartz says researchers have long thought brain stem cells could be used to develop such a diagnostic tool.
“The trouble was coming across donors,” says Schwartz. Unfortunately, these brain stem cells could only be collected from an autistic patient who has passed away. Schwartz says only three donors were found in the last few years.
But it’s far easier to find live donors for simple skin cells.
Now, the stem cells created from autism patient skin biopsies could be “converted” into brain stem cells. This gives Schwartz the ability to compare a wide collection of autistic brain cells, and figure out the genes and chemical properties that determine autism.
The skin biopsies will be collected from donor patients at the UC Davis M.I.N.D. Institute, which runs a clinic serving autistic children. Cells from 100 boys (autism is four times more common in boys than girls) will help establish this cell bank.
The funding also will let CHOC train scientists from around the country on this new field of autism stem cell research.
“The part that’s really exciting for me is that I’ve been working on the fringes of autism for almost 15 years,” says Schwartz. He says what scientists wanted to do all these years was recruit enough donors for detailed research. The funding and the technology finally gives Schwartz his supply of research cells.
“Now I can get samples. Now I can do the study."
DO SOMETHING ABOUT
AUTISM NOW
. . . Read, then Forward
the Schafer Autism Report.
$35 for 1 year - or free!
www.sarnet.org
. . . Read, then Forward
the Schafer Autism Report.
$35 for 1 year - or free!
www.sarnet.org
• • •
PUBLIC HEALTH
Death From Preventable Medical Injuries Approaches 200,000 Per Year
By Cathleen F. Crowley and Eric Nalder Hearst Newspapers
bit.ly/whWnk
Richard Flagg drowned in his own blood.
Stanley Stinnett choked on his own vomit.
Both were victims of the leading cause of accidental death in America — mistakes made in medical care.
Experts estimate that a staggering 98,000 people die from preventable medical errors each year. More Americans die each month of preventable medical injuries than died in the terrorist attacks of Sept. 11, 2001.
In addition, a federal Centers for Disease Control and Prevention study concluded that 99,000 patients a year succumb to hospital-acquired infections. Almost all of those deaths, experts say, also are preventable.
These numbers are not absolutes. There is no definitive study — which is part of the problem — but all of the available research indicates that the death toll from preventable medical injuries approaches 200,000 per year in the United States.
Ten years ago, a highly publicized federal report called the death toll shocking and challenged the medical community to cut it in half — within five years.
Instead, federal analysts believe the rate of medical error is actually increasing.
A national investigation by Hearst Newspapers found that the medical community, the federal government and most states have overwhelmingly failed to take the effective steps outlined in the report a decade ago.
Hearst also found that in states like California that have put some regulations in place, hospitals often ignore the rules without penalty.
Consequently, over that period, as many as 2 million Americans have died needlessly of preventable medical mistakes.
Secrecy built into the system has long kept both the scope of the crisis and the specific problem areas out of public view. Some of those lives could have been saved with innovations as simple as color-coding medical tubes to avoid confusion.
A Hearst data analysis lifted a corner of that veil of secrecy to show that in five states served by Hearst newspapers — New York, California, Texas, Washington and Connecticut — only 20 percent of some 1,434 hospitals surveyed are participating in two national safety campaigns begun in recent years.
+ Read more: bit.ly/whWnk
• • •
TREATMENT
Couple Debuts Autism Iphone App
Interactive program relates images with actions
By Michael C. Juliano. bit.ly/D5eZk
Dan and Carey Tedesco have found a way to use their iPhones to help their son with autism.
The married couple from Shelton in May launched iPrompts, an application that allows parents and caregivers to communicate tasks to an autistic child through images.
Beforehand, they had to create photos and laminate them into a notebook to show Evan, 4, what the next activity would be.
"I found it rather cumbersome," said Carey Tedesco, adding that iPhone's Picture Schedule feature gave her an idea. "I said to just take the notebook and put it into the iPhone?'"
Autism, which affects one out of every 150 individuals, according to the Centers for Disease Control and Prevention, is a developmental disorder that begins at birth or within the first 30 months of life.
The couple, who met while working at Stamford-based sister technology firms Walker Digital and Synapse Group, founded HandHold Adaptive in August 2008 to launch their idea.
Their application, which has been developed with help from Rob Tedesco, Dan's brother from Fairfield, has several hundred images to choose from, said Dan, 35, who still works at as an attorney Walker Digital., a research and development company founded by entrepreneur Jay Walker that gave birth to Priceline.com Inc.
"You can either use the pictures that come with iPrompts or take pictures with the camera," he said of the application, which costs $49.99 at the iTunes App Store. "We are working on expanding it to several thousand images."
iPrompts also uses the iPhone's GPS capability and the application's bank of images and features to create a multimedia "snapshot of a disabled person's current scenario," Dan said.
iPrompts will soon be able to "talk" for kids with language difficulties -- the child will touch the image on the screen and the iPhone will say the word.
It will also include a data-tracking feature so that caregivers can record a child's behavior in a specific scenario to help reveal behavioral patterns, said Carey, who is now self-employed as a freelance graphic designer after leaving Synapse, another Walker company that focuses on magazine and product fulfillment.
+ Read more: bit.ly/D5eZk
• • •
The Expense of Eating With Celiac Disease
By Lesley Alderman, NY Times. bit.ly/111u2
You would think that after Kelly Oram broke more than 10 bones and experienced chronic stomach problems for most of his life, someone (a nurse? a doctor?) might have wondered if something fundamental was wrong with his health. But it wasn’t until Mr. Oram was in his early 40s that a doctor who was treating him for a neck injury became suspicious and ordered tests, including a bone scan.
It turned out that Mr. Oram, a music teacher who lives in White Plains, had celiac disease, an underdiagnosed immune disorder set off by eating foods containing gluten, a protein found in wheat, rye and barley.
Celiac disease damages the lining of the small intestine, making it difficult for the body to absorb nutrients. Victims may suffer from mild to serious malnutrition and a host of health problems, including anemia, low bone density and infertility. Celiac affects one out of 100 people in the United States, but a majority of those don’t know they have the disease, said Dr. Joseph A. Murray, a gastroenterologist at the Mayo Clinic in Minnesota who has been studying the disease for two decades. The disease can be detected by a simple blood test, followed by an endoscopy to check for damage to the small intestine.
Seven years after receiving his diagnosis, Mr. Oram, who is married and has one daughter, is symptom-free, but the cost of staying that way is high. That’s because the treatment for celiac does not come in the form of a pill that will be reimbursed or subsidized by an insurer. The treatment is to avoid eating products containing gluten. And gluten-free versions of products like bread, pizza and crackers are nearly three times as expensive as regular products, according to a study conducted by the Celiac Disease Center at Columbia University.
Unfortunately for celiac patients, the extra cost of a special diet is not reimbursed by health care plans. Nor do most policies pay for trips to a dietitian to receive nutritional guidance.
In Britain, by contrast, patients found to have celiac disease are prescribed gluten-free products. In Italy, sufferers are given a stipend to spend on gluten-free food.
+ Read more: bit.ly/111u2
• • •
PEOPLE
Eunice Kennedy Shriver's Faithful Service
From newsweek.washingtonpost.com bit.ly/407Hh1
Thirty-five years ago, a friend of mine gave birth to a girl with Down Syndrome and immediately put her in an institution. Everyone sympathized. My friend did the right thing, we all believed, not exposing her family to the shame of a damaged child. It was the proper way to deal with the situation.
Eunice Kennedy Shriver, who died Tuesday at age 88, changed all of our minds about that. Through her loving and tireless efforts on behalf of mentally disabled -- inspired by her sister's Rosemary's experiences with mental disabilities -- Eunice changed the world by changing our understanding of mental retardation.
Because of Rosemary, Eunice saw how people with mental disabilities were shunned, mocked and often discarded by society. Eunice spent most of her adult life tenaciously working to bring those people out of the shadows of society and into the mainstream, to be loved and cared for and valued in ways that would allow them to lead productive and useful lives.
The Post's obituary recounts the various ways in which Eunice did that, most notably by organizing the Special Olympics in 1968. But I know Eunice's impact on the world first-hand. My son Quinn Bradlee was born with severe learning disabilities as well as many medical problems. We were told that he would have to be institutionalized, that he would never go to high school or college, never have a job or a relationship, never have a life.
Today, at age 27, Quinn is the author of a book about being learning disabled, "A Different Life", he has his own Web site for those with learning disabilities called friendsofquinn.com, and he is in a relationship with a wonderful young woman. Without Eunice this probably would not have happened. Eunice's work gave Quinn (and me) the courage to be open and honest about his problems, and he has been able to help and inspire many people because of it. Eunice's son, Tim Shriver, now chairman of the Special Olympics, has also been a huge support for Quinn.
+ Read more: bit.ly/407Hh1
• • •
NY School Bus Matron
Accused Of Abusing 8-year-old
By Kevin Deutsch from riverdalepress.com bit.ly/14Fvr2
The city’s special commissioner of investigation (Riverdale) is looking into allegations that a bus matron abused an 8-year-old Riverdale boy who suffers from cerebral palsy by hitting his legs, pulling his hair, pushing him and forcing him off his special-needs bus during a series of abusive outbursts over the past month, according to the child’s family and the Department of Education.
The matron, whose job is to ensure the welfare of the children aboard the bus, was suspended Monday by the Department of Ed’s Office of Pupil Transportation pending the outcome of an investigation by Special Commissioner of Investigation Richard J. Condon, the DOE said.
The handicapped student, Samad Jan, had complained to his parents for four weeks that the woman was abusing him. His mother, Yolanda Jan, confronted the matron about the allegations three weeks ago, at which time the matron denied them.
Last week the boy’s father, Mansoor Jan, said he climbed onto the bus and witnessed the matron hitting his son forcefully on his upper legs and screaming at him before she grabbed hold of the boy and forced him toward the exit.
‘It hurt me’ Samad, who also suffers from epilepsy and has limited movement on his right side, said he’s afraid to get back on the bus.
“She hit me a lot,” he said, touching the places on his upper legs and lap where he claims the matron struck him hardest. “It hurt me."
+ Read more: bit.ly/14Fvr2
• • •
NY Family Mourns Autistic Teen's Drowning
By Sandra Peddie bit.ly/36SeNw
A Lindenhurst family is mourning the drowning death at a Catskills campground of their oldest son, Ryan Barrett, a teenager with autism and a history with seizures.
Ryan, 14, his brother, Kevin, 6, and their father, David Barrett, 43, had gone to the North South Lake Campground in Haines Falls on Thursday afternoon on their annual father-son camping trip. Some eight families make the trip, and Ryan eagerly looked forward to it every year, said his mother, Mary Ellen Barrett.
"He loved this trip," she said Saturday. "It was what he talked about all year."
The group was setting up tents when Ryan went to play at a shallow creek about 20 yards from the campground.
"He was there one minute and gone the next," David Barrett said.
When the father and others realized Ryan was missing, they immediately began searching for him but couldn't find him. They called state police, who searched for him overnight.
At 10 a.m. Friday, police found the teenager's body, face-down under a culvert leading from the creek into North Lake, a 70-acre lake that is one of two lakes at the campground, according to New York State Police Investigator William Fitzmaurice.
David Barrett said his son had not wandered off, but had suffered a seizure.
"Everybody knew where he was. He fell in an odd place and disappeared from view," he said.
Ryan's death is the second such in the area in the past month, Fitzmaurice said.
• • •
EDUCATION
Corporal Punishment in U.S. Schools
NOTE: This is one of a welcomed stream of articles in the media lately regarding abuse of students, disabled or not, in the public schools. Last edition, we reprinted a report from the NY Times. – Editor.
Impairing Education American Civil Liberties Union and Human Rights Watch
By M.J. Stephey. time.com bit.ly/nP2LZ
It seems like a scene from Oliver Twist — a young pupil being beaten by a 300-lb man wielding an inch-thick wooden paddle — but according to a new report by Human Rights Watch and the American Civil Liberties Union, nearly a quarter of a million children were subjected to corporal punishment in public schools in the U.S. during the 2006-2007 academic year. Based on 202 interviews with parents, students, teachers and administrators, and supplemented with data from the U.S. Department of Education, the report reveals how the spare-the-rod-spoil-the-child philosophy continues to rule thousands of classrooms across America, and how students with disabilities are disproportionately affected by such draconian methods of discipline.
Highlight Reel:
1. What "corporal punishment" means: "Corporal punishment is defined under human-rights law as "any punishment in which physical force is used and intended to cause some degree of pain or discomfort." There is no comprehensive definition of corporal punishment under U.S. state or federal law. The ACLU and Human Rights Watch documented cases of corporal punishment including hitting children with a belt, a ruler, a set of rulers taped together or a toy hammer; pinching, slapping or striking very young children in particular; grabbing children around the arm, the neck or elsewhere with enough force to bruise; throwing children to the floor; slamming a child into a wall; dragging children across floors; and bruising or otherwise injuring children in the course of restraint."
2. On its widespread use in classrooms, especially in punishing disabled students: "Corporal punishment is legal under domestic law in 20 states ... Texas paddles the most students in the nation, as well as the most students with disabilities ... The total number of students, with and without disabilities, who were subjected to corporal punishment in the 2006-2007 school year was 223,190. ... Nationwide, students with disabilities receive corporal punishment at disproportionately high rates. In Tennessee, for example, students with disabilities are paddled at more than twice the rate of the general student population. ... Students with autism are particularly likely to be punished for behaviors common to their condition, stemming from difficulties with appropriate social behavior. ... Anna M., whose son with autism was physically punished repeatedly when he was seven years old, noted, "The teacher felt he was doing some stuff on purpose. If you met him, you wouldn't know he was autistic straight away. People thought we were making an excuse for him.'"
+ Read more: bit.ly/nP2LZ
TAKE ACTION AGAINST ABUSE: Contact the NAA website: bit.ly/ATwh7
• • •
Trent U. Participating In Autism And Bullying Research
By Petersborough Examiner. bit.ly/KBVrf
A Trent University professor will share a $115,891 grant to research bullying in special education students.
James D. A. Parker from Trent and Queen’s University professor Elizabeth Kelley have received the grant from Autism Speaks, an American organization dedicated to researching autism spectrum disorders (ASD), a Trent release stated yesterday.
Parker and Kelley are the only two Canadian researchers to receive this award from Autism Speaks.
Parker is the Canada Research Chair in emotion and health at Trent and Kelley is a psychology professor at Queen’s. The grant will also support Trent PhD student Patricia Kloosterman to complete her work in the area of bullying and victimization in adolescents with special education needs.
The two-year project will investigate bullying behavior and peer victimization in adolescents with ASD.
Parents whose children have ASD often report their children are bullied at school but there is little scientific research available about why the problem exists and what can be done, the release stated. This project will investigate specific factors through experiences of ASD adolescents in junior high and high schools in the Peterborough, Kingston and Frontenac regions.
A better understanding of what it’s like to be bullied will help develop more effective interventions and prevention programs, the release stated.
• • •
EVENTS
Registration is Open: Hear Top Experts on Effective Autism Treatments
St. Paul, MN Sept. 12-13th
Fall 2009 Conference in
Dallas Oct. 8-12th at our
ARI's Defeat Autism Now! Conference has the reputation of providing the latest information, the kind that reduces roadblocks in individuals with autism and pries open the door of possibility and hope. That's why thousands of parents and professionals have attended our conferences over the past 14 years and why many will be joining us in the weeks to come: Sept. 12-13th in St. Paul, MN and Oct. 8-12th at our Fall 2009 Conference in Dallas. We hope you can join us too.
With leading experts from around the world, free evening sessions, hands-on learning opportunities, and workshops and seminars for healthcare professionals, these must-attend events should be on your calendar. You can attend with confidence: presenters are invited to our conference only after their presentation has been reviewed by doctors and scientists at one of our twice-yearly think tanks.
But the presentations are only part of the reason to attend--time with others who are engaged in the same struggle that you are is invaluable.
Visit the ARI/Defeat Autism Now! Web site bit.ly/mirll
• • •
COMMENTARY
Could Endocrine-Disrupting Chemicals in Vaccines Cause Autism?
By Deirdre Imus on Huffingtonpost.com bit.ly/PSvh7
In a recent Huffington Post article, "Cracking the Autism Riddle: Toxic Chemicals, a Serious Suspect in the Autism Outbreak" (6/30/09), Dr. Harvey Karp gives credence to the theory that environmental chemicals cause autism.
Dr. Karp correctly observes, "research has mounted against a virtual police lineup of EDCs, like BPA (in food cans, hard plastic water bottles), phthalates (in soft plastics, cosmetics) and fire retardants (in sofas, computers, flame-resistant clothing)." He later writes, "Furthermore, since multiple different EDCs have the same effect on the developing body, exposure to a variety of EDCs may create a large cumulative stress to the body."
Environmental "triggers," including endocrine-disrupting chemicals (EDCs), is an area in which autism organizations are seeking to encourage further research and it continues to be under-studied as a mechanism of autism causality.
So how should we study a potential link between EDCs and autism?
Perhaps this is too obvious, but why not examine what most normally developing children who are later diagnosed with autism have in common? Why not study the EDCs in childhood vaccines?
That's right, most vaccines contain aluminum adjuvants used to increase immune response, and aluminum is an endocrine-disrupting chemical. Like it or not, vaccines are likely the largest source of one-time exposure to endocrine-disrupting chemicals in early infant development.
In addition, some vaccines still contain mercury as a preservative, and mercury is also a known EDC as well as a developmental neurotoxin. The seasonal influenza vaccine contains as much as 25 mcg of mercury, exceeding federal safety guidelines established by the EPA.
There is a long list of research demonstrating mercury's effect as an endocrine-disrupting chemical, as referenced in the paper authored by Dr. Tan of the EPA in March 2009 (Tan, Shirlee W., Meiller, Jesse C. and Mahaffey, Kathryn R., "The endocrine effects of mercury in humans and wildlife," Critical Reviews in Toxicology,39:3,228-269).
+ Read more: bit.ly/PSvh7
Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.
• • •
LETTERS
Response to letter on "Mercurial Chinese Medicine"
It is true there is a real issue with quality control on products coming out of China and other markets. However that does not mean the Chinese medicine is not beneficial and shouldn’t be recommended. What it does mean is that it is up to us as parents and to healthcare practitioners to be very knowledgeable about the products we are purchasing and putting into our children. There are very reputable companies in the United States that go above and beyond the testing required by the US government. These companies have very high standards, control every single batch of herbs, and rigorously test them.
The company will always provide a Certificate of Analysis (COA) for each and every batch of herbs. I personally use Evergreen herbs which not only passes GMP guidelines but also passes pharmaceutical grade GMP guidelines. I am well aware of how sensitive children are to metals and toxins as my own son reacted very severely to vaccines and now has Autism. I have complete faith in this company along with a few select other companies. I guarantee there is no way my patients would take these herbs if I thought they were unsafe. There is absolutely no way I would put them into my own son if I was not extremely confident in their purity and he takes them every single day.
So I encourage and applaud parents for researching the herbs (and really any drug for that matter) their practitioners use, it is vital. But it would be such a shame to make a blanket statement that one shouldn’t use Chinese medicine - when it indeed can be used safely and effectively.
- Julie Ormonde, L.Ac., M.Sci.
