Schafer Autism Report


Monday, January 19, 2021                                                  Vol. 13 No. 8

This Friday - January 23

 For  February 2009
Autism Events Calendar

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Group Calls For Ban On Restraints In Schools
TN Issues Restraint Rules For Special Ed Students

Detecting Fragile X at Birth

EPA Nominee Vows To Follow Science

Nimble Moves Come From A Different Section Of The Brain

Kids With Autism Love This Software

Too Poor To Part: Some Divorced Couples Can't Afford To Separate
Extreme Makeover: Home Edition Features Family Who Helps People With Special Needs

Simon Baron Cohen on Autism One Radio

Conference 2009 Biomedical Treatment For Children With Autism - Sweden


Group Calls For Ban On Restraints In Schools
National report includes young Racine boy’s story


age 7,

killed while

      By Paul Sloth, Journal Times.

      Racine — The story of a Racine boy with autism who was restrained in a chair at school was included in a national report released Tuesday detailing the use of restraint and seclusion in U.S. schools.
      The 60-page report includes the experience of Zachary Tempesta, a Racine boy who had been restrained in a chair when he was 3 years old for up to 50 minutes at a time by teachers in a Racine Unified school.
      The National Disability Rights Network unveiled the report during a Capitol Hill news conference last week that outlined specific cases of abuse and identifies what the organization considers inconsistent state laws and a lack of government oversight and investigation of the issue.
      “I read about some of those cases. Seeing it compiled was startling,” said Hasmig Tempesta, Zachary’s mother. “It’s just sad to think about the fact that children had to die because there were no rules about this in schools. That was probably the most horrifying thing."
      Tempesta removed her son from an early childhood program in the district in October 2007 when she learned his teachers restrained him without her knowledge or permission. She filed a complaint with the Department of Public Instruction.
      Officials started investigating the district’s use of the Rifton chair, a specially designed chair used with children who need help sitting upright.
      Following a December 2007 investigation, state education officials determined that teachers in the Racine Unified school improperly restrained Zachary. The investigation spawned several changes in Unified’s practices.
      District officials had started making changes before the results of the investigation were released, including requiring additional staff training and removing the chairs from classrooms that didn’t have children with stability issues.
      Sen. Chistopher Dodd, D-Conn., joined members of the National Disability Rights Network in calling for a nationwide ban on the use of restraint and seclusion in schools.
      Dodd first learned about the use of seclusion and restraint on children more than a decade ago after a newspaper in his state ran a series about an 11-year-old boy who died under restraint in a hospital, he said during the news conference.
      “As a senator and as a parent, those stories chilled me to the bone. They still do to this day,” Dodd said in a news conference. “I plan to use this report and this Congress to help our cause, and together we’ll continue to work toward the ban of use of seclusion and restraint in schools."
      Zachary will celebrate his fifth birthday in a few days, his mother said. He attends school in another district and is doing very well, she added.

      See related story below. –editor.


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• • •

TN Issues Restraint Rules For Special Ed Students
Law aims to keep disabled children safe

      By Christina E. Sanchez for The Tennessean.

      Felicia Burk has homeschooled her 11-year-old son with autism since he had an outburst at school in September and ended up handcuffed and in the back of a police car.
      His Murfreesboro school had called police to try to get him under control.
      Burk said restraint only escalates and prolongs Heith's wild behavior. Also, it went against his individual education plan — drawn up for all special education students to spell out how to help them succeed in school.
      Debates about restraint or even isolation to control behavioral explosions of special education students are not new in Tennessee, which had no laws or rules governing the use of restraint or isolation of special education students.
      A new state law effective this month attempts to change that. The aim of the Special Education Isolation and Restraint Modernization and Behavioral Supports Act is to keep students safe from unreasonable, unsafe or unwarranted discipline.
      And a national advocacy group is focusing attention on the issue, releasing a report last week that highlights a notorious Nashville-area case from 2007.
      In Sumner County, children were being isolated in 4-by-3½-foot plywood boxes that were placed in 12 schools. A parent notified the state's Disability Law and Advocacy Center, which worked with the district to create what are known as calming areas to use when children get unruly. The boxes then were dismantled.
      Advocates from the Disability Coalition on Education and the Arc of Tennessee have pushed for years to prohibit discipline methods that include sitting on students as restraint or putting them in a locked room.
      The new rules allow districts to restrain or isolate under certain conditions. Among steps they prohibit are tie-down straps, use of locked or barricaded rooms, or any restraint that restricts air.
      The State Board of Education will have a first reading of the proposed rules at its Jan. 30 meeting in Nashville.
      Still, many advocates and parents would like to see even stronger state and federal rules. Burk wants restraint outlawed.
      "Restraint is not changing the behavior, but is just interrupting a behavior at that time," said Burk, who also works in special education and is a behavioral analyst. "I understand restraint may be necessary in an emergency situation, but we need to call in every available resources to make sure it does not happen again."

Children in locked closet
      The Disability Law and Advocacy Center, the state's protection and advocacy group, averages five or more calls a month from parents with complaints about special education programs inappropriately restraining or isolating their children.
      "We've had cases where children were put in locked closets — either the door was locked or objects were used to block the door," said Sherry Wilds, attorney for the Disability Law and Advocacy Center. "We've run into situations where restraint and seclusion were used inappropriately and sometimes to a dangerous level."
      It was a call from a parent that got the Advocacy Center involved in the 2007 Sumner County case.
      Discovery of the plywood "seclusion boxes" created a firestorm. The district removed the boxes from the 12 schools and worked with the Advocacy Center to find acceptable alternatives.
      "They changed to calming rooms with bean bag chairs and blankets," said Martha Lafferty, a managing attorney for the Advocacy Center.
      Norma Dam, social education coordinator for Sumner, said special education teachers are trained three times every year on how to deal with restraint and isolation. They no longer use isolation rooms but sometimes remove the child to a quiet, divided area of the room.
      "You try to remove them from whatever it is that is agitating them at the moment and given them time to cool down so they can re-enter the class," Dam said.
      In another case from 2007, a teen died of strangulation after being restrained by a staff member at Chad Youth Enhancement Center near Clarksville.
+ Read more:

• • •


Detecting Fragile X at Birth

      By Roxanne Stein.

      Background: Fragile X syndrome (FSX) is the most common genetic cause of mental impairment. The syndrome is caused by alterations in the FMR1 gene found on the X chromosome. FSX affects individuals in different ways and can vary from learning disabilities to other more severe intellectual impairments. FSX can also affect physical features and speech and language development. While some patients with fragile X may bear great challenges, the impact on others is so minimal they are never diagnosed.
      Males and females may also be impacted differently. Generally, females with fragile X have less severe characteristics than males. Experts attribute this difference to the fact that females have two X chromosomes while males carry just one. Therefore, females have a healthy X chromosome to make up for the one with the nonfunctioning FMR1 gene. It appears that females have the ability to create almost enough fragile X mental retardation protein (FMRP) that the body naturally needs.
      The Autism Link: FSX is the most common cause of autistic behavior, however not all children with the condition have autism or an autism spectrum disorder (ASD). Roughly one-third of all FSX children exhibit some degree of autism. Approximately 2 to 6 percent of all children with autism have the fragile X gene mutation.
      Late Onset Fragile X: Older male carriers of the fragile X gene may suffer from fragile X-associated tremor/ataxia syndrome (FXTAS), which can cause tremors as well as issues with balance and memory. FXTAS is often misdiagnosed as Parkinson's disease. Female carriers of the gene may suffer from problems with ovarian function. The condition fragile X-associated primary ovarian insufficiency (FXPOI) can cause infertility and early menopause.
      Newborn Screening: For the first time, a blood test exists that can identify the fragile X mutation using just a few drops of blood. The test was developed by University of California, Davis researchers and studied at Rush University Medical Center in Chicago. All newborns born at the two facilities whose parents have consented will be tested for fragile X at birth using the new screening method. The goal is to screen as many as 30,000 infants over the next five years. Experts say the test may pave the way for early identification and intervention for all children with fragile X.
      The new test costs just a few dollars while current tests range in the hundreds. Results can also be achieved in a few days, versus several weeks. The test works by utilizing a polymerase chain reaction (PCR) technique that amplifies the expansion of the FMR1 gene. Researchers can identify the amount of nucleotide repeats, from the normal number of repeats (generally up to 55 repeats) to the full fragile X mutation of 200 repeats or more.
• • •


EPA Nominee Vows To Follow Science
Lisa P. Jackson said politics will not compromise experts.

       By Tom Avril and John Sullivan for the Inquirer.

       Lisa P. Jackson, President-elect Barack Obama's pick to head the Environmental Protection Agency, testified yesterday that if confirmed by the Senate she would put science before politics.
      Although Jackson did not mention the Bush administration by name, the testimony from the former head of New Jersey's Department of Environmental Protection was an apparent - but restrained - swipe at the departing president's stewardship of the air and water.
      "If I am confirmed, I will administer with science as my guide,"
      Jackson told members of the Senate Committee on Environment and Public Works. "Political appointees will not compromise the integrity of EPA's technical experts to advance particular regulatory outcomes."
      Environmentalists, Democrats, and even some Republicans have sharply criticized the Bush EPA.
      Pointing to posters mounted behind her, committee chair Barbara Boxer (D., Calif.) cited headlines from an Inquirer series and articles in other newspapers as evidence that the agency had departed from its mission.
      "All you have to do is look at these headlines and see how astray they've gone," Boxer said.
      The Inquirer series last month detailed how administrator Stephen L.
      Johnson rejected the advice of the nation's leading scientists in setting certain air-quality standards; issued flawed regulations that resulted in delayed protection of public health; and pushed a program that praised certain companies with subpar records as being environmental leaders.
      Johnson was at a Martin Luther King Day celebration elsewhere in Washington and did not watch the hearings. Agency spokesman Jonathan Shradar insisted that Johnson considered science in his decisions.
      "Science has been the foundation of EPA decisions" within the confines of the law, Shradar said. "Because of that, the air is cleaner, the water is cleaner, and the land is better protected."
      Shradar reiterated Johnson's support for his likely successor.
      During the hearing of more than four hours, the committee considered Jackson's appointment and that of Nancy H. Sutley, whom Obama has chosen to head the White House Council on Environmental Quality. Both nominees are expected to be confirmed by the full Senate, possibly as soon as next week.
      Jackson's testimony came as the Bush administration got another rebuke - from one of its former members.
      In a commentary today in the British scientific journal Nature, Christine Todd Whitman, the former EPA chief and former New Jersey governor, wrote that the environment "was not a priority" for the Bush administration.
• • •


Nimble Moves Come From
A Different Section Of The Brain

      By Mark Roth, Pittsburgh Post-Gazette

      The nimble finger movements of a violin soloist, an expert typist and a pro football receiver are all made possible by a special part of the brain that is separate from the region that controls other muscle movements.
      That's the main finding of research published this week by neurobiologists at the University of Pittsburgh. The animal experiments not only shed new light on how the human brain has evolved, but may offer a new way of treating brain disorders by using an inactivated form of the rabies virus.
      The research showed that the neurons that control fine motor movements in the hands, arms and shoulders of rhesus monkeys are connected directly to a part of the brain's motor cortex that evolved more recently, said Peter Strick, co-director of the Center for the Neural Basis of Cognition, a joint operation of Pitt and Carnegie Mellon University.
      This area, which allows much more precise control over muscles, is present in some monkeys, the great apes -- gorillas, orangutans and chimpanzees -- and humans, Dr. Strick said, and appears to be a brand new area that was added to the brain later in evolutionary history.
      More ancient animals, even agile ones like cats and gazelles, control their muscles with another part of the motor cortex that sends neurons to the spinal cord, where they pass their messages on to other neurons that intersect with the muscles.
      Cats are impressively graceful, he said, "but can you show me a cat that can type, play the violin, or catch a football? Cats can do flips, but compare a cat to a ballerina -- that's the difference we're talking about."
      The rabies vaccine comes into play because that is what Dr. Strick and his colleague, Jean-Alban Rathelot, used to trace the nerve connections in the rhesus monkeys.
      What makes rabies so dangerous, Dr. Strick said, is that the virus can move directly up the nerves to the brain. By injecting anesthetized monkeys with the virus and later staining the nerve cells after the animals were euthanized, the researchers could tell exactly which part of the brain was controlling the muscle neurons.
      Scientists are working on ways to detoxify the virus, he said, and if they succeed, it conceivably could be used to deliver gene therapy to the brain for such conditions as Alzheimer's or Parkinson's disease.
+ Read more:

• • •


Kids With Autism Love This Software
A program created for architects is an unexpected hit with children on the spectrum.

      Newsweek Magazine

      Science is rich with happy flukes. Remember the story of penicillin? Alexander Fleming discovered the bacteria-destroying mold by accident when he left a culture dish uncovered in his lab in 1928. Eight decades later, here's another one: a Googlesoftware program called SketchUp, which was intended largely for architects and design professionals, has found a very unexpected and welcome fan base—children with autism. SketchUp is not only entertaining kids with autism spectrum disorders, it's providing them with skills that might one day help them as they age out of school and into the workforce.
      It all started when Google's Tom Wyman and Chris Cronin started getting enthusiastic calls and e-mails from architects who had children on the spectrum. Their kids, the parents reported, had discovered the software program and loved it. All they needed was their creativity and a computer mouse and they could design entire neighborhoods. It turns out that SketchUp, which was acquired by Google from a small Colorado-based startup in 2006, allows people with autism to express their ideas in a visual way—a welcome release for kids who have trouble communicating through speech or writing. "After the second or third call, you begin to think there may be something here," says Wyman. So he contacted his local chapter of the Autism Society of America (ASA) in Boulder. "What gives?" he asked.
      What gives is that many people with autism excel at visual thinking. Studies show they perform exceptionally well on the Block Design Task, part of a standard IQ test, which assesses an individual's ability to recreate a complicated red and white pattern using a set of red and white blocks. "They're able to mentally segment the design into its component parts so they can see where each block would go," says Ellen Winner, a professor of psychology at Boston College, something non-autistic kids have trouble doing. Geraldine Dawson, chief scientific officer for Autism Speaks, a leading autism advocacy group, found that the parents of children with autism have superior spatial abilities on the Block test, too—a gift they may be passing on to their kids. Environment likely plays a role as well, says Dawson. Because children with autism have trouble communicating with people, they tend to spend their time interacting with objects. The end result: the visual portion of their brain becomes highly developed.
      Anja Kintsch, head of the assistive technology team for the Boulder Valley School District, has seen this spatial talent up close. Kintsch, who is trained in special education, has seen students with autism walk the streets of Denver, then go back to their desks and create perfect architectural renditions of the city. "I thought they were professional blueprints," she says. Kids with autism tend to love computers, too, because they're predictable and don't demand the social skills required of humans: you don't have to look them in the eye, talk to them, or read their emotions.
+ Read more:

• • •


Too Poor To Part: Some Divorced Couples Can't Afford To Separate
Oldest son is autistic, and her daughter has epilepsy.

      By Holly Herman, Reading Eagle.

      The Agstens of Cumru Township have one thing in common - they don't want to be married.
      And they aren't anymore.
      The couple signed their divorce agreement Monday.
      But they are still living in the same house off Oregon Road.
      And they have no plans to live apart in the near future.
      They are among a growing number of divorced couples who family law officials said can't afford to live apart because of the declining economy.
      "There isn't enough money coming in," said Cherie Agsten, 34. "I'm not thrilled. I want my own place. The marriage is over and done and I want to get out. The economy is horrible. You just can't do it anymore."
      Her ex, Jody Agsten, 43, agreed the two do not have enough money to live separately. They have three children, Stephen 13, Luke, 10, Cora, 8.
      "Our goal is to live separately," Jody said after finalizing the divorce in his lawyer's Wyomissing office. "We have a lot of hardships. The economy is horrible, and we just don't have enough money to make it."
      Cherie said she and Jody get along well enough to stay in the same home.
      "We know we have to get along because of our children," she said. "We would not want it to be this way, but there is nothing we can do about it.
      She said living under the same roof with her former spouse is awkward but tolerable because each understands the other's situation, so they are civil to each other.
      "Jody understands that I am trying to get a higher paying job," Cherie said.
      Jody said that it's frustrating, but he is willing to allow his ex-wife to live in his house until she can afford to move out.
      Cherie said she fears the country is heading into an economic depression.
      "I just don't see things getting better," she said. "It's sad."
      Jody said he plans to file for bankruptcy to clear his debt with the hope of getting a fresh start, adding that his heating and air conditioning business is not doing very well.
      "I don't know what to tell the creditors when they call asking for money," he said.
      Judge Scott D. Lash, head of Berks County family court, said more couples are living under the same roof despite divorce proceedings.
+ Read more:

• • •

Extreme Makeover: Home Edition Features Family Who Helps People With Special Needs

      By Joe Reality.

      As is often the case with Extreme Makeover: Home Edition, Ty Pennington and his design team are coming to the aid of a family who has spent their lives helping others. The Drumm family of  Quincy Township, Pennsylvania works with disabled children through the Challenger Little League Program. Unfortunately, their home has been used as a site to dump trash and waste and is in need of repair.
      Matthew and Blasia Drumm have two children with autism, and they have dedicated their lives to children with disabilities. The Drumms help to manage special needs Little League, and Blasia works as a teacher’s aid at the Franklin Learning Center for Handicapped Children.
      At the Little League games, the Drumms help operate the concessions stand. They also coordinate travel for to tri-state games and tournaments for the League. In 2006, the Drumms were awarded the Penn Marr Challenger League, Division Family Service Award.
      When Matthew and Blasia bought their home, they did not know that it had been used as a dump site for trash and waste. The Drumms do not have the finances necessary to make improvements to the home, and the entire home is heated by a single wood-burning stove. The Drumms’ dream is to one day be able to offer in-home respite care to other special needs children in their home.
      Ty Pennington, his design team, multi-state builder Dan Ryan Builders, Challenger Little League Program and hundreds of volunteers will work to rebuild the Drumm family home. The design team includes designers Paul DiMeo, Eduardo Xol, John Littlefield, Didiayer Snyder. Extreme Makeover: Home Edition airs on Sunday, January 18 from 8 PM to 9 PM ET on ABC.

• • •


Simon Baron Cohen on Autism One Radio Tuesday, January 20,
1:00 pm ET

      Polly Tommey presents: Autism Issues Around the World Guest:  Simon Baron-Cohen, PhD, MPhil Topic:  Prof. Simon Baron-Cohen's testosterone theory, his view on what he found, what he is seeing, and how he was misrepresented by the British press.
      Join The Autism File magazine editor-in-chief, Polly Tommey, as she talks with Prof. Simon Baron-Cohen. According to Polly Tommey: "Simon Baron-Cohen asserts that he was grossly misrepresented by the British press, he is horrified with the Guardian article, and says this has absolutely nothing to do with terminating pregnancies." Polly continued talking about the British press: "The press is just crap. They grossly misprint anything to do with autism over here. They are stopping all the science...everything in this country, and you can't move forward due to the British press."
      For additional background on the obstructionism of the British press and the influences behind it, please see the upcoming article in the January 2009 edition of The Autism File magazine titled  "Vaccine Damage Denial and the British Press" by Martin J. Walker.  Visit 

• • •


Conference 2009 Biomedical Treatment For Children With Autism - Sweden

       Lecturers: Elisabeth Mumper, MD, Medical Director Autism Research Institute, CEO Advocates for Children, Founder of Rimland Center – Autistic children's medical problems and how to heal them, Karyn Serrousi, Writer ”Unraveling the Mystery of Autism” och “The Encyclopaedia of Dietary Intervention for the Treatment of Autism and Related Disorders"
      Philip James, Emeritus Professor of Medicin, University of Dundee – Specialist in Hyperbaric Oxygen Therapy, HBOT Saturday 31 January 2021 10am- 6 pm Birkeaulan, Karolinska Sjukhuset, (Carolean Institute) Huddinge The lecture will be held in English Price: 400 kr. (includes lunch) Price BAN! members: 150 kr.( membership fee 250 kr.) Apply to: Limited number of seats Organised by BAN! – parents treating their children's autism


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