Schafer Autism Report

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Monday, August 31, 2009                                              Vol. 13 No. 92


PEOPLE
Putting Faith Into Practice For Autistic Kids
Rag Business Enriches Life Of Woman With Autism
Voice Of An Angel
Mom Of Student Voted Out Of Class "Survivor-Style" Files Lawsuit

PUBLIC HEALTH
How Independent Are Vaccine Defenders?

EDUCATION
Service Animal Or Comfort Dog?

RESEARCH
Brain Structure Invests Us With Sense Of Personal Space

TREATMENT
Removing The Barriers Of Autism
Possible Cure For Peanut Allergy Discovered: Peanuts

MEDIA
Could Vaccines Given To Young Children Cause Autism?

LETTERS



PEOPLE

Putting Faith Into Practice For Autistic Kids


      By Diana Fishlock for the Harrisburg Patriot-News.
bit.ly/1DB50K

      Sometimes, when the choir sings, Aubree Canonizado throws her head back, closes her eyes and lifts her hands to the heavens.
      At those moments, her father George believes, she's sharing a moment with Jesus.
      "Jesus didn't shun anybody. He migrated toward people who needed him," said George Canonizado, a resident of Mechanicsburg, a few miles west of Harrisburg across the Susquehanna River. His daughter Aubree is autistic. "Everybody needs to know Jesus loves them."
      Jesus loves them, but the person in the next pew might struggle. Children with autism sometimes exhibit behaviors people don't normally see in church. They yell, flap their hands, talk nonstop about one topic, have inappropriate contact with strangers, throw tantrums and behave unpredictably. Some are sensitive to light, noise, crowds and change.
      With autism dramatically on the rise, the religious community is seizing an opportunity to reach out to families with autism, said Shelly Christensen, author of "The Jewish Community Guide to Inclusion of People with Disabilities."
      "This isn't about them and us. This is us. This is all of us," said Christensen, program manager of the Jewish Community Inclusion Program for People with Disabilities in Minneapolis.
      Christensen tells of adults who longed to take part in religious life for decades, but never felt welcome. "It's their birthright," she said.
      "A faith community should be the first place people turn to. You look at the tenets of Judeo-Christian, Muslim religions." Christensen said. "Abraham and Sarah welcomed the strangers. He washed their feet, feeding them, serving them, not patronizing them."
      Autism can isolate a family.
      Anne Platt doesn't even try to take her son Billy, 10, to church anymore. She and her husband, Keith, attend Good Shepherd Church in nearby Camp Hill with their other children, one parent staying home with Billy while the other worships.
      "I can't think of my son first. As Catholics first, that's our worship and that's a very sacred thing," said Platt, of Mechanicsburg. "My son is not going to benefit spiritually from being there, so I feel it's not fair to me to put that on someone else, to detract from their experience so my son can be physically present in the church."
      Billy would spend the entire service singing, talking, running through scripts and getting into other people's personal space, she said. Taking him to the church cry room just sent Billy into sensory overload, she said.
      She would love to go to church as a family, especially at the holidays, but Easter and Christmas, with their packed pews, are especially bad times for Billy.
      It's all about juggling the needs of one group with that of another, Platt said. "There are times you can do that, but there are times that might not be possible."
      William Stillman, a writer who lives in Hummelstown, about 10 miles east of Harrisburg, believes people with autism have a great capacity for knowing God.
      There's a myth that people with autism are in their own little world, but monks meditate to get into their own world, to get closer to God, said Stillman, author of several books on autism and God.
      Some people with autism do a lot of rocking and twirling. "Sufi dervishes do the same thing to get closer to God. The autistic person does it naturally," he said at a workshop this spring at First United Methodist Church in neighboring Hershey.
      "This is not a plague. This is not a scourge. This is not the epidemic that the media reports it to be. It's an opportunity," said Stillman, who has Asperger's syndrome and has worked with autistic children for many years.
+ Read more: bit.ly/1DB50K




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• • •

Rag Business Enriches Life of Woman
With Autism


      By Lorilee Craker, The Grand Rapids Press bit.ly/nnMnB

      Lisa Witte is zipping through old sweatshirts, turning them into rags, like a meat cutter slicing swiftly through hunks of roast beef.
      "She loves it," said Lisa's mom, Phyllis Witte, of her deft daughter. "She can produce 100 pounds of rags in three hours -- she's so fast."
      It's all part of a day's work at Lisa's Quality Rags, the remarkable -- and profitable -- business owned and operated by the 29-year-old woman with special needs. Diagnosed at age 2 with autism, Witte can't read, write or talk beyond saying, "Hi, I'm Lisa," and sometimes parroting what others say.
      "It's amazing she can be a productive member of society," Phyllis Witte said. She and Lisa's father, Teunis, used to think, "'There's so much she can do, yet then again, how will she ever find a real occupation?' God opened all the doors."
      Employed since the age of 15 by Goodwill Industries, Lisa Witte had been trained in a number of skills, including her starting task taking clothes out of boxes and putting them on hangers. "Her aide soon realized she could do a lot more than hang clothes," Phyllis Witte said. "Goodwill taught her skill after skill."
      By last summer, the young woman was a veteran rag cutter. Drawing on used knit sweatshirts and T-shirts that Goodwill hadn't been able to sell, Lisa Witte would slice the clothing into squares about 12-by-12 inches and produce absorbent rags ideal for heavy-duty industrial spills and equipment cleaning.
      It was the perfect match between worker and work, as high-energy Lisa thrived on whipping out 1,000 pounds of rags per month.
      When Goodwill's government funding for Lisa Witte's program ended, the Wittes had an idea: Why not set Lisa up with her own rag cutting business? Goodwill was happy to help their longtime employee. The organization sold three cutting machines to Lisa and her parents and handed over their customer list at no cost. "They really wanted Lisa to succeed," Phyllis Witte said.
      "We knew Lisa was a great individual and a hard worker," said Jill Wallace, vice president of community relations for Goodwill Industries. "We provided her with (the machines) at a discounted cost, and we were happy to help her. She's happy, and she's got a job and is contributing to society."
      Set up as a microenterprise through Hope Network (which provides Lisa with a "skill builder" aide during her 25-hour work week), Lisa's Quality Rags was born about a year ago. Four thrift stores -- New Life, New to You, Project Hope and Nice Twice -- throw their unusable shirts into a "Lisa's box."
      New Life Thrift Store on Division Avenue in Wyoming houses Lisa Witte's operation rent-free in its basement.

• • •

Voice of An Angel

      By Jessica Lyons. bit.ly/KBk3r

      Tennis stars playing at the U.S. Open aren’t the only people getting ready to shine at the event. Gina Marie Incandela, a 7-year-old with autism, will return for the third year in a row to sing the National Anthem before a match.
      Born in Long Island, Gina now lives in Florida. When she was just two, and not yet speaking, her parents took her to see a doctor to undergo some evaluations.
      Mom Michelle said that autism was a diagnosis they were not expecting. As soon as she heard it, she began doing research and the whole family sprang into action, she said, and began looking for services and meeting with therapists.
      *
       Even when Gina could only say vowel sounds, she seemed drawn to music and would frequently hum melodies. Michelle said that she had good pitch, could hold notes perfectly, was in tune and would even use vibrato.
      “We knew, at that point, she was definitely going to be somehow musically inclined,” Michelle said.
      By the age of four, Gina was speaking, and had also begun music therapy. Her ability to speak and sing soon went hand-in-hand, both improving dramatically, her mom said.
+ Read more: bit.ly/KBk3r

• • •

Mom of Student Voted Out Of Class "Survivor-Style" Files Lawsuit

      By Colleen Wixon South Florida Sun-Sentinel.com bit.ly/hGSMH

      The mother of the kindergartner voted out of his classroom more than a year ago has filed a federal lawsuit.
      The complaint in Florida's Southern District of federal court targets the St. Lucie County School Board, teacher Wendy Portillo, the principal and vice principal at Morningside Elementary in Port St. Lucie, Superintendent Michael Lannon, the local head of education for special needs and St. Lucie County Classroom Teachers Association and Classified Unit.
      Melissa Barton said in the lawsuit filed Thursday that the incident traumatized her son, Alex Barton, damaging his self-worth and feelings toward school and people.
      "It's been difficult," said Barton. Alex is in therapy to deal with the incident at Morningside Elementary, she said.
      While the lawsuit seeks unspecified damages, Barton and her attorneys say the lawsuit isn't about money.
      "This is a case about every child who attends school in Florida," said Barton's attorney Paul Sopp, adding that the lawsuit focuses on the violation of Alex's civil rights.
      In May 2008, Alex's teacher Wendy Portillo asked his classmates to vote as to whether he should be allowed back in the classroom. Alex was sent out of the classroom earlier because of behavior issues.
      As Alex stood in front of the room alongside Portillo, students told him how his behavior made them feel. Alex then was voted out of the class, 14 to 2.
      Alex, who since has been diagnosed with a form of autism, spent the day in the nurse's office. It was his last day in a St. Lucie County public school classroom. Last year, Alex got homebound services from the district. This year, he started second grade in a private school.
      Portillo originally was suspended for one year and her tenure was revoked.
      Although an administrative law judge upheld Superintendent Michael Lannon's recommendation, the School Board reversed itself and gave Portillo back her tenure. The one-year unpaid suspension ends in November.
      School District spokeswoman Janice Karst said the district does not comment on pending litigation.
      Barton said Alex still remembers the vote and gets therapy to work through those issues. He talks about how people don't like him, she said.
      "It's not going to disappear. This is something that is going to affect him the rest of his life," she said.

• • •

PUBLIC HEALTH

How Independent Are Vaccine Defenders?


bit.ly/1JozLT

      Sharyl Attkisson Investigates Vaccine Advocates Taking Funding From The Companies Whose Vaccines They Endorse
    
       Government officials and some scientists say there's no link between vaccines and autism ? and they're often backed by independent experts. But how "independent" are they? Sharyl Attkisson reports.
       (CBS) For years some parents and scientists have raised concerns about vaccine safety, including a possible link to autism and ADD. Many independent experts have sided with government officials and other scientists who say there's no possible connection. But how "independent" are they? CBS News investigative correspondent Sharyl Attkisson shares here's what she found.
       They're some of the most trusted voices in the defense of vaccine safety: the American Academy of Pediatrics, Every Child By Two, and pediatrician Dr. Paul Offit.
      But CBS News has found these three have something more in common - strong financial ties to the industry whose products they promote and defend.
      The vaccine industry gives millions to the Academy of Pediatrics for conferences, grants, medical education classes and even helped build their headquarters. The totals are kept secret, but public documents reveal bits and pieces.
      •  A $342,000 payment from Wyeth, maker of the pneumococcal vaccine - which makes $2 billion a year in sales.
      •  A $433,000 contribution from Merck, the same year the academy endorsed Merck's HPV vaccine - which made $1.5 billion a year in sales.
      •  Another top donor: Sanofi Aventis, maker of 17 vaccines and a new five-in-one combo shot just added to the childhood vaccine schedule last month.
      Every Child By Two, a group that promotes early immunization for all children, admits the group takes money from the vaccine industry, too - but wouldn't tell us how much.
      A spokesman told CBS News: "There are simply no conflicts to be unearthed." But guess who's listed as the group's treasurers? Officials from Wyeth and a paid advisor to big pharmaceutical clients.
      Then there's Paul Offit, perhaps the most widely-quoted defender of vaccine safety.
      He's gone so far as to say babies can tolerate "10,000 vaccines at once."
      This is how Offit described himself in a previous interview: "I'm the chief of infectious disease at Children's Hospital of Philadelphia and a professor of pediatrics at Penn's medical school," he said.
+ Read more: bit.ly/1JozLT

• • •

EDUCATION

Service Animal Or Comfort Dog?

Families, schools are at odds over whether service dogs should be allowed to accompany autistic children to classes, leaving the decision to the courts

      By Lindsey Tanner for The Associated Press. bit.ly/aqk8s

      Like seeing-eye dogs for the blind, trained dogs are now being used to help autistic children deal with their disabilities. But some schools want to keep the animals out, and families are fighting back.
      Two autistic elementary school students recently won court orders in Illinois allowing their dogs to accompany them to school. Their lawsuits follow others in California and Pennsylvania over schools’ refusal to allow dogs that parents say calm their children, ease transitions and even keep the kids from running into traffic.
      At issue is whether the dogs are true “service dogs” — essential to managing a disability — or simply companions that provide comfort.
      School districts say they are not discriminating, just drawing the line to protect the safety and health of other students who may be allergic to or scared of dogs.
      “The school district has 650 students, not just one. So we have to balance,” said Brandon Wright, attorney for the Villa Grove district in central Illinois, which objected to 6-year-old Kaleb Drew’s plan to bring his yellow Labrador retriever, Chewey, to school.
      Kaleb’s family won a judge’s order in July allowing the dog to come to class until a trial, set to start Nov. 10.
      Service dogs have long been used by the blind, but training them to help those with autism is relatively new. While there’s little research on how these animals affect autistic children, families like Kaleb’s say they have seen marked improvement. And the support group Autism Speaks includes a list of dog-training groups among resources on its Web site.
      Autism is a developmental disorder that involves behaviors such as poor eye contact, trouble communicating and repetitive movements such as rocking or hand-flapping. Those with the disorder are prone to outbursts and may have trouble with changes in their environment.
      The dogs are trained to be a calming influence, providing a constant between home, school and other new places. Sometimes, as in Kaleb’s case, the dogs are tethered to children to prevent them from running off in dangerous situations.
      “It’s done so much more than we thought it could,” said Kaleb’s mother, Nichelle Drew. “We want Kaleb to be able to experience more of life,” and the dog has helped him do that, she said.
      Chewey does not react when Kaleb “throws a fit” during times of transition from one activity to another, which calms him much more quickly, Drew said.
      The tether fitted around Kaleb’s waist helps the dog stop Kaleb from running into traffic at pickup time, as he is prone to do.
      Under the federal Americans with Disabilities Act, “a person with autism would be considered a person with a disability in nearly all cases, and a service animal is any guide dog, signal dog or other animal individually trained to provide assistance to someone with a disability,” said Alejandro Miyar, a spokesman for the Department of Justice.
      Miyar declined comment on specific cases but said schools are required to make accommodations for disabled students to use a service animal. Illinois is among several states with similar laws.
      Schools, though, can argue that the animals do not provide a functional service. Wright said Kaleb’s school already provides him with adequate special services. Officials believe Chewey is more of a companion or comfort dog, not a true service dog.
      Elizabeth Emken, vice president of government relations for Autism Speaks, said her 17-year-old autistic son has used a service dog for about two years.
      Emken said the dog helps control her son’s pacing and circling, but the family opted against allowing the boy to take the dog to school because she did not know if he would be able to manage the dog effectively.
+ Read more: bit.ly/aqk8s

• • •

RESEARCH

Brain Structure Invests Us
With Sense of Personal Space


bit.ly/A4NJW

      IANS Neuro scientists have pinpointed the brain structure regulating our sense of personal space, possibly opening the way to a better understanding of autism and other disorders.
      The structure, the amygdala - a pair of almond-shaped regions located in the brain - was previously known to process strong negative emotions such as anger and fear and is considered the seat of emotion in the brain.
      However, it had never been linked rigorously to real-life human social interaction.
      The scientists, led by Ralph Adolphs, psychology and neuroscience professor and post-doctoral scholar Daniel P. Kennedy, at the California Institute of Technology (Caltech), were able to make this link with the help of a unique patient, a 42-year-old woman known as SM, who has extensive damage to the amygdala on both sides of her brain.
      “SM is unique, because she is one of only a handful of individuals in the world with such a clear bilateral lesion of the amygdala, which gives us an opportunity to study the role of the amygdala in humans,” says Kennedy, who led the study.
      SM has difficulty recognising fear in the faces of others, and in judging the trustworthiness of someone, two consequences of amygdala lesions that Adolphs and colleagues published in prior studies.
      During his years of studying her, Adolphs also noticed that the very outgoing SM is almost too friendly, to the point of “violating” what others might perceive as their own personal space.
      “She is extremely friendly, and she wants to approach people more than normal. It’s something that immediately becomes apparent as you interact with her,” says Kennedy.
      Previous studies of humans never had revealed an association between the amygdala and personal space.
+ Read more: bit.ly/A4NJW

• • •

TREATMENT

Removing The Barriers of Autism

Children with autism use alternative keyboard to communicate with their families and their world

bit.ly/ZjnUs

      Autism can build a wall of poor communication between those struggling with the condition and their families. While a personal computer can help bridge the divide, the distraction and complexity of a keyboard can be an insurmountable obstacle.
      Using a unique keyboard with only two "keys" and a novel curriculum, teachers with Project Blue Skies are giving children with autism the ability to both communicate and to explore the online world.
      At the heart of the project is a device called the OrbiTouch. Human-factors engineer Pete McAlindon of BlueOrb in Maitland, Fl., conceived of the concept behind the OrbiTouch more than a decade ago as a way to prevent carpal tunnel syndrome and provide computer access to people with limited or no use of their fingers.
      Developed with the support of two National Science Foundation (NSF) Small Business Innovation Research awards (9661259 and 9801506), the concept of representing keyboard strokes with paired movements was critical to the design from the start.
      "If you are unable to use a keyboard and mouse effectively or at all because of a physical disability, what chance do you have of using a computer?," asked McAlindon. "The OrbiTouch is designed to keep people with physical or developmental disabilities connected to their computers."
      The Project Blue Skies curriculum is based on the functions of the OrbiTouch, which allows a user to input letters, symbols and any other command by independently manipulating two computer-mouse shaped grips forward, back, diagonally and to the sides.
      For people with carpal tunnel syndrome, as well as other hand and finger ailments, the motions driving the OrbiTouch are far kinder than those for a keyboard.
      With Project Blue Skies, the hardware is matched to lesson plans, training aids such as games, and assessment tools. The two-grip device is ideal for people with autism because it is less distracting than a keyboard and does not require finger motion.
+ Read more: bit.ly/ZjnUs

• • •

Possible Cure For Peanut Allergy Discovered: Peanuts

By Loz Blain bit.ly/35Skcq

      Peanut allergies are very common - something like one in every 200 children will suffer from some sort of reaction, and while roughly 100 people per year die as a result, peanuts are still thought to be the most prevalent food-related cause of death. Certainly, for those afflicted, it's a huge annoyance to be constantly checking labels and asking at restaurants just to make sure. So it's good to hear that Duke University researchers are making progress on a cure - or at least a therapy for reducing the effects of peanut exposure.
      The cure for peanut allergy, at least for some people, appears to be ... peanuts. Peanut flour, taken daily in tiny and incrementally increasing doses, can help the body build up a tolerance to the point where sufferers can eat them without suffering any effects.
      Many peanut allergy sufferers experience anaphylaxis - a severe allergic reaction - which is at the extreme end of the allergic spectrum. Symptoms may include generalised flushing, difficulty in breathing and can result in cardiac arrest and death.
      Common causes of anaphylaxis include foods such as peanuts, tree nuts, sesame, fish, shellfish, dairy products and eggs. Non-food causes include wasp or bee stings, natural latex (rubber), penicillin or any other drug or injection.
      Duke University, in association with the Arkansas Children's Hospital, has been working on studies in which children with known peanut allergies were given precisely measured doses of peanut flour with their food each day. Starting with the lowest possible dose that brings no adverse reaction (sometimes as little as a thousandth of a peanut), the children slowly increased their exposure over the course of two weeks.
      Peanut allergies are very common - something like one in every 200 children will suffer from some sort of reaction, and while roughly 100 people per year die as a result, peanuts are still thought to be the most prevalent food-related cause of death. Certainly, for those afflicted, it's a huge annoyance to be constantly checking labels and asking at restaurants just to make sure. So it's good to hear that Duke University researchers are making progress on a cure - or at least a therapy for reducing the effects of peanut exposure.
      The cure for peanut allergy, at least for some people, appears to be ... peanuts. Peanut flour, taken daily in tiny and incrementally increasing doses, can help the body build up a tolerance to the point where sufferers can eat them without suffering any effects.
+ Read more: bit.ly/35Skcq

[Thanks to Richard Black.]

• • •

MEDIA

Could Vaccines Given To Young Children Cause Autism?


      WKTV – bit.ly/tgXWi

      Dr. Andrew Wakefield is the first doctor who suggested a possible link between vaccines and autism.
      The British doctor tells Matt Lauer that he is only going to keep fighting to prove to the world his research is the truth - research that says some children's immunizations cause autism.
      "What the authorities need to realize, the children are not going away, their parents are not going away. So we need to get on and deal with it," said Dr. Wakefield.
      Many parents, even here in the U.S. have jumped on the studies bandwagon. And even though newer studies haven't backed him up, Dr. Wakefield refuses to back down.
      Helen Stepowany, the Executive Director of The Kelberman Center for Autism in Utica says the overall research does not show that there is a link between vaccines and autism.
      She said the Centers for Disease Control and the American Academy of Pediatrics both agree there is no link. However, she does value the British doctor's work.
      "The thing that has happened because of this hypothesis, is it has raised a level of discussion about vaccine and what is the cause, the reason for autism," Stepowany said.
+See video: bit.ly/tgXWi

• • •

LETTERS

Gas Bags


      The "chambers" mentioned in this article, Hyperbaric Chamber: Healthy Or Hype? bit.ly/suluZ , are not chambers at all. They are "bags". And they make people rich because they are not actually a chamber at all. They skate on the coat tails of what real hyperbaric chambers do. It is sad that the community is once again mislead and this time by our own. The truth must be told. Bags that go to max 1.3ata are NOT hyperbaric chambers. Not by far.
      - Kerri

Research Money

      I am continually amazed at the amount of dollars spent on "research", while there never much spent on "how to help" areas.
       -Jo Bancroft-Deahl


                      
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