Rise in autistic adults worries caregivers

http://www.sacbee.com/ourregion/story/1983338.html

Rise in autistic adults worries caregivers

By Cynthia Hubert
chubert@...

Published: Sunday, Jun. 28, 2009 - 12:00 am | Page 1A

As a chubby, smiling baby boy, Marlon Barton delighted everyone around him. Now that he is a strapping young man who flaps his hands and makes odd noises, no one knows quite what to do with him.

Barton is 26 years old, 6 feet 2, 283 pounds and acutely autistic. He was diagnosed when the condition was considered unusual and when doctors offered little hope to parents of the children who suffered from it.

His mother, Pearlie Barton, cares for her son around-the-clock now in their south Sacramento home. "He scares people, even though he usually is not aggressive," she said.

"Being large, African American and autistic does not work in his favor," either socially or in programs designed to help people with disabilities, she said.

Autism, a neurodevelopmental disorder that affects language and social skills, was relatively rare when Barton was born. Since then, for reasons that are unclear, diagnoses have skyrocketed and the condition is surfacing in an estimated 1 in 150 children.

As a tidal wave of these youngsters moves toward adulthood with complex behavioral and medical problems, society is largely unprepared.

"We don't have the programs. We don't have the research," said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. "We have this very large adult population of autistics coming along, and we don't know how to deal with them. We just haven't come to terms with it."

But the futures of hundreds of thousands of autistic people in America cannot be ignored for long, said Hendren and others.

In California, regional centers will be serving more than 50,000 autistic people of all ages by the end of this year, according to the state Department of Developmental Services. If the trend continues, that number will grow to 70,000 by June 2012.

By 2013, according to the department, more than 4,000 teenagers with autism will reach adulthood, and by 2018 the agency will be serving more than 19,000 adults with the condition. Nationally, the number of autistic children expected to need extensive adult services by 2023 is about 380,000 people, and the bill for caring for them will be in the billions of dollars.

Care providers are just beginning to grapple with how to deal with the surge, even as governments slash social services to cope with budget deficits.

"The financial impact will be huge," said Hendren. "Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, 'Who is going to take care of my autistic child after I am gone?' "

It is a question that haunts Pearlie Barton, 58, and her friend Helen Richard, 78, who also has an adult autistic son.

"Right now, every time I leave Marlon out of my sight I'm taking a chance," said Barton, recalling how once, when she looked away for a moment, her son wandered into a women's restroom. "I have to watch him every minute. But I'm not going to be around forever."

Research focuses on children

Some people with autism, including Ray Richard, can speak and care for themselves with limited supervision. Some are able to work, if employers are willing to adapt to their limited social skills. Others, like Marlon Barton, are entirely dependent on caretakers and family members. Day programs, job opportunities and housing options geared specifically toward adults with autism are limited.

"There's really nothing out there to meet the needs of these guys, even guys who are as highly functional as Ray," Richard said. Her son is 43 years old and has Asperger's syndrome, a milder form of autism.

"Ray can type 40 words per minute," Richard said. "He has a great vocabulary. He has a photographic memory, but I can't get him a job because you can't really teach socialization. It's terrible."

Life for her son might have been better, she said, had he had access to training programs when he was younger.

Hundreds of millions of dollars a year are now devoted to research around autism. But the vast majority of studies and treatment are focused on children, whose brains are still developing and who, with early intervention, have a good chance to develop speech, social, and vocational skills.

#612

From: Lydia Glider-Shelley <mizlydia@...>
Date: Wed Jul 1, 2009 3:31 pm
Subject: Fwd: [ASANDiscussion] "Scottish scientists raise hopes of new treatments for autism"

ledheadlydia

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http://www.timesonline.co.uk/tol/news/uk/scotland/article6579371.ece

Scottish scientists raise hopes of new treatments for autism

Charlene Sweeney

Scottish scientists have discovered a gene linked with autism, raising the prospect of the development of new treatments for the condition.

Drugs to control autism could be developed within five years as a result of the findings, according to the doctor who led the research team at the University of Aberdeen. The condition affects more than 500,000 people across Britain and there is no cure.

The study, published yesterday, began seven years ago with one child with severe autism.

The boy attended the genetics clinic at Aberdeen Royal Infirmary, where he was found to have a rare re-arrangement of chromosomes in which one had broken and swapped with another. By using genetic mapping techniques, researchers discovered that this realignment had disrupted a gene known to be important to memory and learning.

http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm166667.htm

Stimulant Medications used in Children with Attention-Deficit/Hyperactivity Disorder - Communication about an Ongoing Safety Review

Products involved include: Focalin, Focalin XR (dexmethylphenidate HCl ); Dexedrine, Dexedrine Spansules, Dextroamphetamine ER, Dextrostat (dextroamphetamine sulfate); Vyvanse (lisdexamfetamine dimesylate); Desoxyn (methamphetamine); Concerta, Daytrana, Metadate CD, Metadate ER, Methylin, Methylin ER, Ritalin, Ritalin-LA, Ritalin-SR (methylphenidate); Adderall, Adderall XR (mixed salts amphetamine); Cylert (pemoline) and generics.

Audience: Pediatricians, Neuropsychiatric healthcare professionals

[Posted 06/15/2009] FDA notified healthcare professionals that it is providing its perspective on study data published in the American Journal of Psychiatry on the potential risks of stimulant medications used to treat Attention-Deficit/Hyperactivity Disorder (ADHD) in children. This study, funded by the FDA and the National Institute of Mental Health (NIMH), compared the use of stimulant medications in 564 healthy children from across the United States who died suddenly to the use of stimulant medications in 564 children who died as passengers in a motor vehicle accident.The study authors concluded that there may be an association between the use of stimulant medications and sudden death in healthy children. Given the limitations of this study’s methodology, the FDA is unable to conclude that these data affect the overall risk and benefit profile of stimulant medications used to treat ADHD in children. FDA believes that this study should not serve as a basis for parents to stop a child’s stimulant medication. Parents should discuss concerns about the use of these medicines with the prescribing healthcare professional. Any child who develops cardiovascular symptoms (such as chest pain, shortness of breath or fainting) during stimulant medication treatment should immediately be seen by a doctor.

FDA is continuing its review of the strengths and limitations of this and other epidemiological studies that evaluate the risks of stimulant medications used to treat ADHD in children. FDA and the Agency for Healthcare Research and Quality are sponsoring a large epidemiological study that will provide further information about the potential risks associated with stimulant medication use in children. The data collection for this study will be complete later in 2009.

[06/15/2009 - Communication About An Ongoing Safety Review - FDA]
[06/15/2009 - News Release - FDA]
[06/15/2009 - Stimulant Medications Prescribing Information, Medication Guides - FDA]

#606

From: Lydia Glider-Shelley <mizlydia@...>
Date: Mon Jun 22, 2009 4:00 pm
Subject: Fwd: Brain Regions Responsible for Empathy Mapped by Researchers

ledheadlydia

Offline

http://www.physorg.com/news164382270.html

Brain Regions Responsible for Empathy Mapped by Researchers

June 16th, 2009 Brain Regions Responsible for Empathy Mapped by Researchers

Enlarge

Regions of the brain responsible for empathic accuracy Image credit: Kevin Ochsner and Niall Bolger

Columbia University researchers have shown for the first time that two brain systems are primarily responsible for allowing humans to accurately predict the emotions of others. Psychology professors Kevin Ochsner and Niall Bolger, graduate student Jamil Zaki and research assistant Jochen Weber used functional MRI scans to zero in on the parts of the brain that people use when correctly discerning how others are feeling.

“Prior work has only shown us what goes on in the brain when you’re reacting to or thinking about another person’s emotions,” said Ochsner. “Until now, we haven’t known whether and how these parts of the brain really make you accurate.”

The study, “The neural bases of empathic accuracy,” is being published this week in the early online edition of the Proceedings of the National Academy of Sciences.

Later, a new group of 16 volunteers, dubbed “perceivers,” watched each video. They rated the emotions experienced by each speaker while lying down in a functional MRI scanner, which measures blood-flow in the brain. Researchers then compared the two sets of ratings to judge the perceivers’ “empathic accuracy.”

The researchers found a correlation between the perceivers’ level of accuracy and their reliance on two kinds of brain systems: regions of the parietal and premotor cortex that help people understand the simple intentions behind simple gestures, and the medial prefrontal cortex, responsible for interpreting the meaning of those gestures and putting them into context.

Interestingly, in cases where perceivers were inaccurate, they engaged a third region: one of those responsible for controlling and responding to one’s own emotions.

“It may be the case that when you’re focusing in on your personal experience while watching someone else, you may be missing the cues that they’re giving off,” said Zaki, adding that that finding would need further investigation.

The paper’s authors now plan to apply their findings to the study of autism and, more broadly, to the understanding of social dysfunction. Their methodology may help researchers predict which autism patients will fare better or worse in social settings and to track patients’ progress through treatment.

“There’s the potential of using this to study social function in everyday life,” said Ochsner. “This paradigm could help us figure out why some people are good at interacting with others and have lots of strong, healthy relationships and why others don’t.”

#605

From: Lydia Glider-Shelley <mizlydia@...>
Date: Mon Jun 22, 2009 3:59 pm
Subject: Fwd: The Vaccine Evangelist

ledheadlydia

Offline

This article is from the University of Pennsylvania alumni magazine. Dr. Offit is Chief of the Infectious Diseases Department at the Children’s Hospital of Philadelphia, which is part of the University of Pennsylvania health system.

The Vaccine Evangelist

Paul Offit doesn’t look like the kind of person who inspires hate mail. Gray-haired and slightly rumpled, neither does he seem a likely candidate to play Defender of Science against a celebrity-studded medical crusade. Yet with the publication of a new book, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, the Maurice R. Hilleman Professor of Vaccinology has found himself at the center of a maelstrom of controversy.

Offit’s argument is straightforward. He contends that childhood vaccines are safe and that there is no scientific basis for the notion that they cause autism. This puts him in tune with most of the public-health and medical establishment, including the Centers for Disease Control and Prevention (CDC). Yet as Gregory Poland, chief of vaccine research at the Mayo Clinic, told The New York Times, “Paul is a lightning rod, a figure who goes charging into the fray.”

Hence the hate mail.

Autism’s False Prophets is in part a response to a controversial theory proposed in the British medical journal The Lancet in 1998, by a charismatic doctor named Andrew Wakefield. Wakefield suggested that the measles-mumps-rubella (MMR) vaccine caused autism. His theory has since been discredited, and Wakefield has been investigated by the British General Medical Counsel on charges of falsifying data and scientific fraud. But that didn’t diminish the theory’s grip on a group of predominantly non-scientist advocates.

“When I appeared on television and was quoted in newspaper and magazine articles saying that vaccines didn’t cause autism, my life changed,” Offit writes in the book’s introduction. “While I was on a federal advisory committee to the CDC—one that had made recommendation about the use of the mercury-containing preservative thimerosal in vaccines—I got a death threat.” An FBI investigation found the threat credible, so the advisory committee hired an armed guard for its meetings for the next few years. In 2006, Offit had to pass by an anti-vaccine rally to get to another CDC event. One protester brandished a sign with a photo of Offit’s face and the word terrorist in large red letters.

Several celebrities have aligned themselves against Offit and the medical establishment he represents. Robert F. Kennedy Jr. has accused the CDC of covering up evidence linking vaccines to autism, and actress Jenny McCarthy is a public spokesperson for Generation Rescue, an organization supporting the vaccine-autism connection.

Offit first became concerned about changing public attitudes toward vaccines after a measles outbreak in Philadelphia in 1991. The disease, which had been eradicated for almost 30 years, had resurfaced because parents were choosing not to vaccinate their children against it. Over the next few years, Offit noticed a dramatic increase in children being treated for other vaccine-preventable diseases at Children’s Hospital of Philadelphia (CHOP), where he is chief of the infectious diseases department. Kids were presenting at the hospital with whooping cough; pneumonia caused by whooping cough; severe skin infections from pox-related complications; and meningitis caused by Haemophilus influenzae type b (HIB), a preventable infection that killed an infant in Minnesota last year.

“The percentage of parents choosing to withhold, delay, or separate vaccines has increased dramatically over the last 10 years,” says Offit. “It could be as high as 15 percent of parents. That’s a problem.” He founded the Vaccine Education Center at CHOP in 2000 to address the issue.

The first third of Autism’s False Prophets chronicles the way Wakefield’s controversial theory rose and fell, based on personal charisma and dubious science. Offit then delves into the two other major stages of the vaccine-autism debate. The next popular theory was that thimerosal, a preservative used in many vaccines prior to 2001, caused autism. That morphed into the overload theory: that taking too many vaccines at once caused autism. Subjecting all three to the “marvelously self-correcting” gaze of disciplined science, Offit finds the theories lacking.

The book has begun to gain traction. The New York Times credited it with “galvanizing a backlash against the anti-vaccine movement in the United States.” The vaccine-autism connection has been on trial in the court of public opinion for a decade, and for the last few years it has been on the federal docket as well. Special masters of the U.S. Court of Federal Claims have conducted multiple evidentiary hearings in the Omnibus Autism Proceeding, a large class-action lawsuit brought under the auspices of the Vaccine Compensation Program. Offit is an expert witness for the defense in this “vaccine court.” February 2009 marked what Offit calls “a victory for American children” in that the court rejected the claim that thimerosal causes autism. The same week, The Sunday Times (UK) reported that Andrew Wakefield “changed and misreported results in his research,” falsifying data in his Lancet study linking MMR vaccine and autism, according to evidence presented before the British General Medical Council.

Offit sees the U.S. vaccine court decision as pivotal. “It’s a confirmation of the science,” he says. “When the court supports science, it makes it easier to explain science to the public. People see the courtroom as an independent arbitrator.” He predicts that the decision will herald the victory of science over pseudoscience. “The ‘vaccines-cause-autism’ hypothesis is largely dead,” he said in an interview. “My reaction? Joy! Absolute joy.”

Offit didn’t start his scientific career intending to become a figurehead for a public-health crisis. An internationally renowned expert in rotavirus-specific immune responses, he is the co-inventor of the rotavirus vaccine RotaTeq, for which he received the Jonas Salk Award from the Association for Professionals in Infection Control and Epidemiology, among other awards. A diarrheal disease, rotavirus kills 600,000 children in poor countries every year, according to the World Health Organization.

Part of the difficulty of his new public role, Offit confesses, is learning to speak what amounts to a different language. “Frankly, it counters all your instincts,” he says. “A good scientist will rigorously define a hypothesis, establish burdens of proof, subject that proof to statistical analysis, and then will be very careful. As a scientist, you say what your data allow you to say—your discussion never exceeds your results. That does not play on Larry King Live or Oprah. [In those venues] you have to be willing to say, ‘Vaccines don’t cause autism, MMR vaccine doesn’t cause autism, thimerosal doesn’t cause autism’—even though technically the science never allows you to say that.”

“There’s always a fear that the science gods will strike you dead,” Offit adds with a grin.

Provided the science gods spare him, Offit will be able to enjoy one surprising consequence of his new book: fan mail. Now parents of autistic children write to thank him, as do physicians. “Thank you for providing a well-thought-out, alternative response to the screaming snake-oil merchants and the media coverage they attract,” wrote one such fan, the parent of an autistic child. “Had I read your book 15 years ago, it would have saved me time and money. Maybe now we can finally begin to put more faith into science.”

#604

From: larry Lyons <larryd552002@...>
Date: Thu Jun 18, 2009 5:57 pm
Subject: Re: Fwd: Globe and Mail: Study finds autistic subjects finish reasoning exam 40 per cent faster than volunteers without the disorder

larryd552002

Offline

Thanks Lydia,

Here's my favorite part of the study:

The most striking part of the study, Dr. Mottron said, is that when the questions got harder, the part of the brain involved in visual processing became increasingly active in the people with autism.

â€œThe

The most striking part of the study, Dr. Mottron said, is that when the questions got harder, the part of the brain involved in visual processing became increasingly active in the people with autism.

â€œThey have a special kind of intelligence for doing this task.â€ On average, the 15 people with autism, who were between the ages of 14 and 36, didn't score any higher than the 18 members of the control group, but finished much more quicklyy have a special kind of intelligence for doing this task.â€ On average, the 15 people with autism, who were between the ages of 14 and 36, didn't score any higher than the 18 members of the control group, but finished much more quickly."

-----

It turns out there is an old study done at Carnegie-Mellon Institute where men and women were tested against each other. In those, similar parts of the brain were more active in women during testing, even though the women scored significantly lower on the intelligence tests. The conclusion was that the brains of men were more efficient. In other words, the brains of men were more capable of overcoming *resistance.*

It looks to me like maybe autistics are generally dumber than normal people is that we are intelligence, but we have resistance to learning. The reason the machines lit up during parts of the test where we didn't need verbal skills was because we were encountering resistance to thinking. The reason we finished up quicker is because we did not like that part of the test!

Duh. These researchers (so-called) need to get their shit together and study the research done by others before they make half-baked conclusions.

Yours,

Larry

#603

From: Lydia Glider-Shelley <mizlydia@...>
Date: Thu Jun 18, 2009 3:52 pm
Subject: Fwd: Globe and Mail: Study finds autistic subjects finish reasoning exam 40 per cent faster than volunteers without the disorder

ledheadlydia

Offline

http://www.theglobeandmail.com/news/technology/science/people-with-autism-ace-intelligence-test/article1184701/

People with autism ace intelligence test
Study finds autistic subjects finish reasoning exam 40 per cent faster than volunteers without the disorder

Anne McIlroy
Tuesday, Jun. 16, 2009 06:53PM EDT
People with autism were 40 per cent faster at finishing an intelligence test that measures reasoning than volunteers without the disorder, a new Canadian study has found.
Using a brain scanner, the scientists also discovered that their autistic subjects used different parts of their brain to solve problems. They said the work, published in the journal Human Brain Mapping, could lead to new ways to help people with autism learn.

“By studying how they solve this test, we could find a way to teach them and present information in a way they could process. I think it could fundamentally change the way they are taught,” said Isabelle Soulières, the lead author of the paper, who is now at Harvard University doing a post-doctoral fellowship.

The non-verbal test that was used in the experiment measures problem-solving and learning skills. In one problem, subjects were given a diagram of dots and lines with a missing section. They had to pick the correct combination of dots and lines from eight options to fill in the blank space.

Dr. Soulières said people with autism relied on visual processing, and found the right answers more quickly than members of the control group, who were more likely to explicitly test potential solutions until they found the right one.

The work is still in the early stages, and a new teaching method would have be developed and tested, Dr. Soulières said. The current practice involves breaking tasks down into small components, she said.

But when teaching someone with autism to read the sound “ea,” for example, it might be better to present a page with 100 words like peach, teach and reach to show the visual pattern.

Her co-authors include Laurent Mottron, a respected autism researcher at the University of Montreal, and Michelle Dawson, who has autism, with whom Dr. Soulières has collaborated on several studies that show the intelligence of people with autism is not being accurately measured.

Autism and related conditions, known under the catch-all term autism spectrum disorders, have become increasingly common in recent years and affect communication and social interaction. The brain disorder starts in early childhood and persists into adulthood; research suggests that only about 5 per cent of adults with autism are self-supporting.

Traditionally, about three-quarters of people with autism have been classified after testing as having low intelligence. But Dr. Mottron and his colleagues have found that this depends on the type of test used. People with autism fare poorly on a standard IQ test known as the Wechsler scales, in which even the non-verbal questions require verbal instructions.

But another widely used test, Raven's Standard Progressive Matrices, is a more appropriate way to measure the intelligence of people with autism because it is as independent of language as possible.

Many people with autism – although not all of them – score much higher on the Raven test than on a standard IQ test, the University of Montreal team found. In one case, a research subject deemed mentally retarded scored in the 94th percentile on the Raven test. That's the intelligence level of a university student.

In this experiment, the researchers wanted to know if people with autism use different parts of their brain on the intelligence test. So they asked 15 people with autism and 18 other volunteers to take the Raven test in a brain scanner. Both groups practised in a mock scanner so they would be comfortable during the experiment.

The most striking part of the study, Dr. Mottron said, is that when the questions got harder, the part of the brain involved in visual processing became increasingly active in the people with autism.

“They have a special kind of intelligence for doing this task.” On average, the 15 people with autism, who were between the ages of 14 and 36, didn't score any higher than the 18 members of the control group, but finished much more quickly.

Dr. Mottron said it is important to explore new ways of teaching people with autism because there isn't strong scientific evidence that the behavioural therapies currently offered are effective.

That's a controversial idea among families affected by autism. Sam Yassine, an Ottawa father who has a 10-year-old son with autism, is worried that the latest research will be used to support the argument that people with autism are simply wired differently, and don't need specialized therapy. Behavioural therapy helped his son, who as a three-year-old was isolated and spent hours watching a spinning wheel. Now he has friends and is doing well in school.

He said he agrees that people with autism have a different kind of perception, intelligence and visual skills, but adds that behavioural therapy has made an enormous difference in his son's life.

“It is the most effective way to teach children with autism,” he said.

#602

From: Lydia Glider-Shelley <mizlydia@...>
Date: Thu Jun 18, 2009 1:55 pm
Subject: Fwd: Science Daily: Autistics Better At Problem-solving, Study Finds

ledheadlydia

Offline

Proof positive that they need us, LOL

Web address:
http://www.sciencedaily.com/releases/2009/06/
090616121339.htm

Autistics Better At Problem-solving, Study Finds

Participants were asked to complete patterns in the Raven's Standard Progressive Matrices (RSPM) -- a test that measures hypothesis-testing, problem-solving and learning skills. (Credit: Image courtesy of University of Montreal)

ScienceDaily (June 17, 2009) — Autistics are up to 40 percent faster at problem-solving than non-autistics, according to a new Université de Montréal and Harvard University study published in the journal Human Brain Mapping. As part of the investigation, participants were asked to complete patterns in the Raven's Standard Progressive Matrices (RSPM) – test that measures hypothesis-testing, problem-solving and learning skills.

"While both groups performed RSPM test with equal accuracy, the autistic group responded more quickly and appeared to use perceptual regions of the brain to accelerate problem-solving," says lead author Isabelle Soulières, a post-doctoral fellow at Harvard University who completed the experiment at the Université de Montréal. "Some critics agued that autistics would be unable to complete the RSPM because of its complexity, yet our study shows autistics complete it as efficiently and have a more highly developed perception than non-autistics."

Fifteen autistics and 18 non-autistics were recruited for the study. Participants were 14 to 36 years old and matched according to their preliminary results on the Wechsler Adult Intelligence Scale. All subjects underwent magnetic resonance imaging to explore their neural activity during RSPM problem-solving. While autism is a common neurodevelopmental disability characterized by profound differences in information processing and analysis, this study showed that autistics have efficient reasoning abilities that build on their perceptual strengths.

"This study builds on our previous findings and should help educators capitalize on the intellectual abilities of autistics," says senior researcher Laurent Mottron, the new Marcel & Rolande Gosselin Research Chair in Autism Cognitive Neuroscience of the Université de Montréal and psychiatry professor. "The limits of autistics should constantly be pushed and their educational materials should never be simplified."

Adds Dr. Soulières: "The Raven's Standard Progressive Matrices are among the most complex tests to provide insight on how a person understands and formulates rules, manages goal hierarchies and performs high-level abstractions. Our wager was that autistics could complete such a test and they surpassed our expectations."

This study was funded by the Canadian Institutes of Health Research and Autism Speaks.

Journal reference:

Soulieres, Gary E. Enhanced visual processing contributes to matrix reasoning in autism. Human Brain Mapping, 2009; DOI: 10.1002/hbm.20831

#601

From: Lydia Glider-Shelley <mizlydia@...>
Date: Mon Jun 15, 2009 11:28 pm
Subject: Fwd: Palm Beach Post - cast your vote

ledheadlydia

Offline

http://blogs.palmbeachpost.com/opinionzone/2009/06/14/teacher-voted-back-into-the-classroom/

And comment if you feel the urge...

---------- Forwarded message ----------
From: melissa barton <melissafbarton@...>
Date: Mon, Jun 15, 2009 at 1:10 PM
Subject: Palm Beach Post
To: Melissafbarton@...

The discrimination supporters found this blog first. But, there is a vote.......cast your ballot.

Melissa

--
Lydia Shelley
www.rainbow-websites.com
<3 <3 <3 <3 <3 <3 <3
"Every politician on earth claims to support freedom. The problem is so few of them understand the simple meaning of the word."
~Ron Paul
<3 <3 <3 <3 <3 <3 <3
WE CAN DO THIS
http://www.nopom.info
<3 <3 <3 <3 <3 <3 <3
Autism/Aspergers T-Shirts & Designs
http://www.cafepress.com/autismrules
<3 <3 <3 <3 <3 <3 <3
"First they ignore you, then they ridicule you, then they fight you, then you win."
~~Mahatma Gandhi

#600

From: larry Lyons <larryd552002@...>
Date: Thu Jun 11, 2009 4:58 am
Subject: Re: Fwd: A Time Comes When Silence is Betrayal

larryd552002

Offline

Now I am really disgusted. Wasn't it Socrates who warned against the tyranny of the majority? I don't know what he wanted us to do the majority, though. Here in California the majority just voted to remove the right for homosexuals to get married. And there's nothing anyone can do about it--except maybe sneak around at night and slap the shit out of any redneck or bible thumper or self-righteous schoolmarm we can sneak up on...

Yours,

Larry

--- On Wed, 6/10/09, Lydia Glider-Shelley <mizlydia@...> wrote:

From: Lydia Glider-Shelley <mizlydia@...>
Subject: [for-and-by-autistics] Fwd: A Time Comes When Silence is Betrayal
To: adult-asperger@yahoogroups.com, "aspergerscircle" <AspergersCircle@yahoogroups.com>, for-and-by-autistics@yahoogroups.com
Date: Wednesday, June 10, 2009, 8:05 PM

Melissa asked me to forward this to as many people as possible, so please pass it on...

---------- Forwarded message ----------
From: melissa barton <melissafbarton@ yahoo.com>
Date: Wed, Jun 10, 2009 at 9:05 PM
Subject: A Time Comes When Silence is Betrayal
To: Melissafbarton@ yahoo.com

A Time Comes When Silence is Betrayal

On April 4, 1967 -- one year before his death -- Martin Luther King spoke at Riverside Church in New York City.

Now is that time.

It is with sadness and dismay that I write to you this evening. As you know, Alex Barton my son, was ostracized by his kindergarten teacher last year for being autistic.

This evening, Mike Lannon and the school board members of Saint Lucie County Schools decided that the civil rights of people with autism, and those who do not fit their idea of perfect do not matter.

http://www.tcpalm. com/news/ 2009/jun/ 10/st-lucie- county-school- board-allows- portillo- keep-/

ST. LUCIE COUNTY â€” ST. LUCIE COUNTY --- Former Morningside elementary teacher Wendy Portillo said she hopes to return to teaching in local schools this fall, following a unanimous vote Wednesday evening by the school board that lets her keep tenure and contract, a decision that comes more than one year after she lead her kindergarten students to vote classmate Alex Barton out of class.

â€œIâ€™m overjoyed,â€ Portillo said after an emotional 90-minute hearing in which more than a dozen teachers and parents urged the school board to relent in the punishment. â€œIâ€™m happy that Iâ€™ll be able to go back to doing what I love to do.â€

The hearing was interrupted by applause after each and every speaker supported Portillo. Many who spoke blamed the incident on a lack of adequate policies by the school system to help teachers deal with disruptive students. Alex was in the process of being diagnosed with a high-functioning form of autism when the incident took place May 21, 2008.

School Board Website:

http://www.stlucie. k12.fl.us/

Sadly,

Melissa Barton

--
Lydia Shelley
www.rainbow- websites. com
<3 <3 <3 <3 <3 <3 <3
"Every politician on earth claims to support freedom. The problem is so few of them understand the simple meaning of the word."
~Ron Paul
<3 <3 <3 <3 <3 <3 <3
WE CAN DO THIS
http://www.nopom. info
<3 <3 <3 <3 <3 <3 <3
Autism/Aspergers T-Shirts & Designs
http://www.cafepres s.com/autismrule s
<3 <3 <3 <3 <3 <3 <3
"First they ignore you, then they ridicule you, then they fight you, then you win."
~~Mahatma Gandhi

#599

From: Lydia Glider-Shelley <mizlydia@...>
Date: Thu Jun 11, 2009 3:05 am
Subject: Fwd: A Time Comes When Silence is Betrayal

ledheadlydia

Offline

http://www.tcpalm.com/news/2009/jun/10/st-lucie-county-school-board-allows-portillo-keep-/

Melissa asked me to forward this to as many people as possible, so please pass it on...

---------- Forwarded message ----------
From: melissa barton <melissafbarton@...>
Date: Wed, Jun 10, 2009 at 9:05 PM
Subject: A Time Comes When Silence is Betrayal
To: Melissafbarton@...

A Time Comes When Silence is Betrayal

On April 4, 1967 -- one year before his death -- Martin Luther King spoke at Riverside Church in New York City.

Now is that time.

It is with sadness and dismay that I write to you this evening. As you know, Alex Barton my son, was ostracized by his kindergarten teacher last year for being autistic.

This evening, Mike Lannon and the school board members of Saint Lucie County Schools decided that the civil rights of people with autism, and those who do not fit their idea of perfect do not matter.

ST. LUCIE COUNTY — ST. LUCIE COUNTY --- Former Morningside elementary teacher Wendy Portillo said she hopes to return to teaching in local schools this fall, following a unanimous vote Wednesday evening by the school board that lets her keep tenure and contract, a decision that comes more than one year after she lead her kindergarten students to vote classmate Alex Barton out of class.

“I’m overjoyed,” Portillo said after an emotional 90-minute hearing in which more than a dozen teachers and parents urged the school board to relent in the punishment. “I’m happy that I’ll be able to go back to doing what I love to do.”

The hearing was interrupted by applause after each and every speaker supported Portillo. Many who spoke blamed the incident on a lack of adequate policies by the school system to help teachers deal with disruptive students. Alex was in the process of being diagnosed with a high-functioning form of autism when the incident took place May 21, 2008.

School Board Website:

http://www.stlucie.k12.fl.us/

Sadly,

Melissa Barton

#598

From: larry Lyons <larryd552002@...>
Date: Thu Jun 11, 2009 1:43 am
Subject: Re: Documentary - " Her Name is Sabine "

larryd552002

Offline

Thanks Lydia,

I'm sure this is an excellent story. My only complaint is against the reviewer. I can't stand the overuse of the term "devastated," and Jason Buchanan used it twice in rapid succession:

"Despite her mysterious and increasingly common disorder, however, it was an inadequate health care paradigm - not her lifelong affliction - that has wrecked the most devastating consequences on Sabine's life. A woman whose endearing personality, numerous talents, and remarkable potential for growth were tragically devastated by a five-year stay in an inadequate psychiatric hospital."

Yikes!

Larry

--- On Wed, 6/10/09, Lydia Glider-Shelley <mizlydia@...> wrote:

From: Lydia Glider-Shelley <mizlydia@...>
Subject: [for-and-by-autistics] Documentary - " Her Name is Sabine "
To: "asandiscussion" <ASANDiscussion@yahoogroups.com>, adult-asperger@yahoogroups.com, "aspergerscircle" <AspergersCircle@yahoogroups.com>, for-and-by-autistics@yahoogroups.com
Date: Wednesday, June 10, 2009, 8:14 AM

This film won the best film award at the Cannes 2008 Film Festival.

" Her Name is Sabine " is the title of the touching but quite sad documentary directed by the sister of an autistic woman.

http://www.blockbus ter.com/browse/ catalog/movieDet ails/353867

Theatrical Release Information |

The disheartening failure of specialized institutions and the irreparably damaging effect that they can have on the ailing patients that they purport to help are highlighted in actress-turned- filmmaker Sandrine Bonnaire's intimate portrait of her autistic sister Sabine. Sabine Bonnaire is a thirty-eight year old woman who has struggled with autism since childhood. Despite her mysterious and increasingly common disorder, however, it was an inadequate health care paradigm - not her lifelong affliction - that has wrecked the most devastating consequences on Sabine's life. A woman whose endearing personality, numerous talents, and remarkable potential for growth were tragically devastated by a five-year stay in an inadequate psychiatric hospital, Sabine was eventually able to stage a remarkable recovery thanks to the unwavering support of her family and friends. Featuring remarkable footage filmed over a twenty-five year period by Sabine's closest sister, Elle s'appelle Sabine presents the plight of the autistic from the unique perspective of two people who have lived and learned from the widely misunderstood disorder. ~ Jason Buchanan, All Movie Guide

Theatrical Feature Running Time:

85 mins

Complete Cast:

Â·         Sandrine Bonnaire

Â·         Sabine Bonnaire

Director(s):

Sandrine Bonnaire

Writer(s):

Catherine Cabrol, Sandrine Bonnaire

Producer(s):

Thomas Schmitt

Categories:

Special Interest, Documentary

Closed Captioning:

Check All Versions

Subtitles:

Check All Versions

Awards:

Â·         2007 - Her Name is Sabine - Cannes Film Festival - FIPRESCI - Criticsâ€™ Week and Directorsâ€™ Fortnight

#597

From: Lydia Glider-Shelley <mizlydia@...>
Date: Wed Jun 10, 2009 3:14 pm
Subject: Documentary - " Her Name is Sabine "

ledheadlydia

Offline

http://www.blockbuster.com/browse/catalog/movieDetails/353867

This film won the best film award at the Cannes 2008 Film Festival.

" Her Name is Sabine " is the title of the touching but quite sad documentary directed by the sister of an autistic woman.

Theatrical Release Information |

The disheartening failure of specialized institutions and the irreparably damaging effect that they can have on the ailing patients that they purport to help are highlighted in actress-turned-filmmaker Sandrine Bonnaire's intimate portrait of her autistic sister Sabine. Sabine Bonnaire is a thirty-eight year old woman who has struggled with autism since childhood. Despite her mysterious and increasingly common disorder, however, it was an inadequate health care paradigm - not her lifelong affliction - that has wrecked the most devastating consequences on Sabine's life. A woman whose endearing personality, numerous talents, and remarkable potential for growth were tragically devastated by a five-year stay in an inadequate psychiatric hospital, Sabine was eventually able to stage a remarkable recovery thanks to the unwavering support of her family and friends. Featuring remarkable footage filmed over a twenty-five year period by Sabine's closest sister, Elle s'appelle Sabine presents the plight of the autistic from the unique perspective of two people who have lived and learned from the widely misunderstood disorder. ~ Jason Buchanan, All Movie Guide

Theatrical Feature Running Time:

85 mins

Complete Cast:

· Sandrine Bonnaire

· Sabine Bonnaire

Director(s):

Sandrine Bonnaire

Writer(s):

Catherine Cabrol, Sandrine Bonnaire

Producer(s):

Thomas Schmitt

Categories:

Special Interest, Documentary

Closed Captioning:

Check All Versions

Subtitles:

Check All Versions

Awards:

· 2007 - Her Name is Sabine - Cannes Film Festival - FIPRESCI - Critics’ Week and Directors’ Fortnight

#596

From: larry Lyons <larryd552002@...>
Date: Tue Jun 9, 2009 6:49 pm
Subject: Re: US Researchers To Focus On Pregnant Women For Autism Study

larryd552002

Offline

http://www.ssc.education.ed.ac.uk/resources/vi&multi/hcass96.html

I hope they get some researchers who are psychoanalysts. The big problem with modern "researchers" is that they look for things they already know and ignore evidence that might contradict conventional wisdom. For instance, researchers found that blind children are a thousand times more likely to be autistic that the general population. The big problem wih this is that it confirmed none other than Bruno Bettelheim, so it was finally decided that the blind children don't have "true" autism.

Larry

--- On Tue, 6/9/09, Lydia Glider-Shelley <mizlydia@...> wrote:

From: Lydia Glider-Shelley <mizlydia@...>
Subject: [for-and-by-autistics] US Researchers To Focus On Pregnant Women For Autism Study
To: adult-asperger@yahoogroups.com, "asandiscussion" <ASANDiscussion@yahoogroups.com>, for-and-by-autistics@yahoogroups.com
Date: Tuesday, June 9, 2009, 9:00 AM

http://online. wsj.com/article/ BT-CO-20090608- 714331.html

JUNE 8, 2009, 5:12 P.M. ET

US Researchers To Focus On Pregnant Women For Autism Study

By Jennifer Corbett Dooren

Of DOW JONES NEWSWIRES

WASHINGTON (Dow Jones)--Researchers are looking for 1,200 women who have a child with autism who are pregnant with another child as part of a study looking for clues into causes of the disorder.

The study, which is primarily being funded by the National Institutes of Health along with money from Autism Speaks, an advocacy group, is the largest of its kind.

The project, known as Early Autism Risk Longitudinal Investigation, or EARLI, study, will follow women from pregnancy and their babies until they are three years old.

The goals of the study are to identify early signs of autism and understand its earliest possible causes. The Centers for Disease Control and Prevention estimates that 1 in 150 U.S. children have an autism spectrum disorder, which includes autism, Asperger's syndrome and pervasive developmental disorders. There's no known cure for autism, which is characterized impairments in social interaction, communication and unusual behavior and interests, but therapy and medication can improve symptoms.

"By studying families who are already affected by autism, we feel we have the best chance at learning how genetics and environmental factors could work together to cause autism," said Craig Newschaffer, a department chair at the Drexel University School of Public Health in Philadelphia and the study's principal investigator.

Although the exact cause of autism remains unknown, people who already have a child with autism have a much higher risk of having another child with autism or an autism spectrum disorder such as Asperger's syndrome. The study is open to pregnant women who have a child with a diagnosed autism spectrum disorder.

Newschaffer said biological samples such as blood and urine will be collected throughout the study and DNA from the samples will be analyzed. When babies are born, researchers will also collect samples from the umbilical cord, the placenta, which supplies babies with nutrients and oxygen during pregnancy, and the meconium, which are baby's first stools.

The study is open to women who live near one of the four research centers in Philadelphia, Baltimore and northern California.

Newschaffer said women who are planning or hoping to become pregnant can contact a research center to pre-enroll in the study. Women would have to become pregnant to actually participate in the study. He also said women who less than 20 weeks pregnant now who already have a child with autism are eligible to participate in the study.

Babies born during the study period will have a number of developmental assessments beginning at three months until three years of age. Older siblings with autism may also have additional assessments to confirm their diagnosis.

More information can be found on the study Web site at http://earlistudy. org.

-By Jennifer Corbett Dooren, Dow Jones Newswires; 202-862-9294; jennifer.corbett@ dowjones. com

#595

From: Lydia Glider-Shelley <mizlydia@...>
Date: Tue Jun 9, 2009 4:00 pm
Subject: US Researchers To Focus On Pregnant Women For Autism Study

ledheadlydia

Offline

http://online.wsj.com/article/BT-CO-20090608-714331.html

JUNE 8, 2009, 5:12 P.M. ET

US Researchers To Focus On Pregnant Women For Autism Study

By Jennifer Corbett Dooren

Of DOW JONES NEWSWIRES

WASHINGTON (Dow Jones)--Researchers are looking for 1,200 women who have a child with autism who are pregnant with another child as part of a study looking for clues into causes of the disorder.

The study, which is primarily being funded by the National Institutes of Health along with money from Autism Speaks, an advocacy group, is the largest of its kind.

The project, known as Early Autism Risk Longitudinal Investigation, or EARLI, study, will follow women from pregnancy and their babies until they are three years old.

The goals of the study are to identify early signs of autism and understand its earliest possible causes. The Centers for Disease Control and Prevention estimates that 1 in 150 U.S. children have an autism spectrum disorder, which includes autism, Asperger's syndrome and pervasive developmental disorders. There's no known cure for autism, which is characterized impairments in social interaction, communication and unusual behavior and interests, but therapy and medication can improve symptoms.

"By studying families who are already affected by autism, we feel we have the best chance at learning how genetics and environmental factors could work together to cause autism," said Craig Newschaffer, a department chair at the Drexel University School of Public Health in Philadelphia and the study's principal investigator.

Although the exact cause of autism remains unknown, people who already have a child with autism have a much higher risk of having another child with autism or an autism spectrum disorder such as Asperger's syndrome. The study is open to pregnant women who have a child with a diagnosed autism spectrum disorder.

Newschaffer said biological samples such as blood and urine will be collected throughout the study and DNA from the samples will be analyzed. When babies are born, researchers will also collect samples from the umbilical cord, the placenta, which supplies babies with nutrients and oxygen during pregnancy, and the meconium, which are baby's first stools.

The study is open to women who live near one of the four research centers in Philadelphia, Baltimore and northern California.

Newschaffer said women who are planning or hoping to become pregnant can contact a research center to pre-enroll in the study. Women would have to become pregnant to actually participate in the study. He also said women who less than 20 weeks pregnant now who already have a child with autism are eligible to participate in the study.

Babies born during the study period will have a number of developmental assessments beginning at three months until three years of age. Older siblings with autism may also have additional assessments to confirm their diagnosis.

More information can be found on the study Web site at http://earlistudy.org.

-By Jennifer Corbett Dooren, Dow Jones Newswires; 202-862-9294; jennifer.corbett@...

#594

From: larry Lyons <larryd552002@...>
Date: Wed Jun 3, 2009 7:13 am
Subject: Re: Fwd: It's about time! The US Department of Education OCR investigates 64 of 67 school districts in FLORIDA!

larryd552002

Offline

Hi lydia,

This is wonderful news!

As for the other story, I'm sympathetic with the teacher. I would much rather have a loving teacher that liked getting neck rubs from me, than the kind I had when I was little. If I knew I could get away with it, I would seriously hurt those cold-hearted assholes.

Anyway, I have a close friend who is an elementary school teacher. His sexuality is perfectly normal. He has a wife and two adopted kids. He has been married for 40 years. I have known him for fifty years. We met as teenagers in college. At that time he shamelessly informed me that he really loved children. He said he wanted to be a schoolteacher because he loves children so much. He thought all the best schoolteachers really love children. Over the years, sending my own kids to school, I found he was right. The best teachers love their students.

If you ever saw the movie, "Up The Down Staircase," Sandy Dennis did an amazing acting job as a schoolteacher who loved all her students, including a teenage hood who had a simple-minded concept of love and tried to take advantage of it. She really did love him, but she groaned with disappointment and cried, "oh no" "please don't do this," as he tried to kiss her.

Love may be a lot more than the old in-out-in-out, but it's not so Saint-Paul innocent either. Everybody has a wish to touch and be touched by those they love. I just don't think it's so evil. And it's not against the law.

In fact, I think we should be grateful for such passion. These are the kind of people who help shape our best citizens. If a loving teacher wants a shoulder rub--"massage"--(talk about yellow journalism) from our children every now and then, we should be able to sacrifice that much for what we owe them.

Yours,

Larry

--- On Tue, 6/2/09, Lydia Glider-Shelley <mizlydia@...> wrote:

From: Lydia Glider-Shelley <mizlydia@...>
Subject: [for-and-by-autistics] Fwd: It's about time! The US Department of Education OCR investigates 64 of 67 school districts in FLORIDA!
To: "asandiscussion" <ASANDiscussion@yahoogroups.com>, adult-asperger@yahoogroups.com, for-and-by-autistics@yahoogroups.com
Date: Tuesday, June 2, 2009, 8:58 PM

I must admit all the retaliation has been tough to deal with for me and the kids and there were days I thought Alex would never have justice. TODAY I have a different feeling.

http://www.winknews .com/news/ local/46668757. html

Confirmed: ST LUCIE COUNTY AND PALM BEACH COUNTY ARE UNDER INVESTIGATION.

SOUTHWEST FLORIDA- Sixty-four school districts across Florida are now under investigation for civil rights violations, including five southwest Florida districts.
The U.S. Department of Education Office of Civil Rights is looking into complaints that the districts may be denying rights to special needs students.
The complaints were filed by Collier ESE Reform, an advocacy group made up of Collier County parents with Special Needs children.

There are 67 school districts in Florida if you want to know if your child's district is on the list call the number below:

Atlanta Office
Office for Civil Rights
U.S. Department of Education
61 Forsyth St. S.W., Suite 19T70
Atlanta, GA 30303-3104

Telephone: 404-562-6350
FAX: 404-562-6455; TDD: 877-521-2172
Email: OCR.Atlanta@ ed.gov

The story below turns my stomach but you must see it:

http://www.wptv. com/news/ local/story/ Massages- for-Jupiter- elementary- school-teacher/ itXoeoABBk6qqAsE o7P7Cw.cspx? p=Comments

Melissa Barton

PS Only a few made my email list SO Please tell everyone you know!!!

#593

From: Lydia Glider-Shelley <mizlydia@...>
Date: Wed Jun 3, 2009 4:03 am
Subject: Re: [ASANDiscussion] AP: NIMH Study Finds Antidepressant Fails to Treat Autism in Children, Gives Them Nightmares

ledheadlydia

Offline

That does not surprise me. Zoloft gave me nightmares. Seroquel didn't, but I didn't take that for long... and ONLY to sleep, really.

I found this part to be especially sobering:

"The overall global market for drug treatment in autism is at least $2 billion and SSRI antidepressants account for nearly 60 percent of that, the study authors said."

On Tue, Jun 2, 2009 at 7:00 AM, Ari Ne'eman <Aneeman@...> wrote:

Study Finds Antidepressant Fails to Treat Autism in Children, Gives Them Nightmares

Monday , June 01, 2009

ADVERTISEMENT

An antidepressant that is among the most popular kinds of medicine used for treating autism didn't work for most kids and caused nightmares and other side effects, new research found.

Results showed risks with Celexa outweighed any benefits in the largest published study of medication versus dummy pills for autism. That's according to the lead author, Dr. Bryan King, director of child and adolescent psychiatry at Seattle Children's Hospital and the University of Washington medical school.

The drug is not approved for treating autism. However, many doctors have prescribed it, thinking it might help prevent repetitive behaviors such as spinning, twirling and head-banging that are hallmark autism symptoms. Similar antidepressants have been shown to help treat repetitive actions in people with obsessive-compulsive disorder.

But in the autism study, Celexa worked no better than dummy pills. In fact, compared with kids on placebo, those on Celexa were more than twice as likely to develop repetitive behaviors, as well as other side effects including sleep problems and hyperactivity.

Celexa is in a class of antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, which are among the most widely used medicines given for autism.

The new research could "change this practice," said prominent Yale University autism researcher Dr. Fred Volkmar. He commented in an editorial released with the study Monday in the June issue of Archives of General Psychiatry.

The results echo a separate study reported in February that showed a low-dose form of Prozac, another SSRI, also did not reduce repetitive behaviors in autism.

The overall global market for drug treatment in autism is at least $2 billion and SSRI antidepressants account for nearly 60 percent of that, the study authors said.

Celexa's maker, Forest Laboratories Inc., issued a statement saying the company "was not involved in this study and therefore cannot provide comment."

The National Institutes of Health paid for the research.

Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, said the new results underscore the difficulty in treating a condition with an uncertain cause and symptoms that range from mild to severe.

"We are still so challenged to come up with medications that can address core symptoms," she said, "largely because we still don't understand the biology of autism."

The study involved 149 autistic children aged 5 to 17 who were randomly given either up to 20 milligrams daily of Celexa for 12 weeks or dummy pills.

Doctors rated children's symptoms during treatment on a scale of 1 to 7, with high scores reflecting worsening symptoms. The rating method allowed doctors to evaluate improvements in repetitive actions and also other behaviors.

Only about one-third of children on Celexa showed substantial improvement; most showed little or no improvement or got worse.

Celexa is among antidepressants labeled with a warning about the potential for increasing risks for suicidal thoughts and behavior in children, but these symptoms didn't occur in the study.

About one-third of children on dummy pills also improved. King said reasons for that are uncertain. It could be they expected to get better with any kind of pill — the well-known "placebo effect." Or it could just have been a coincidence since autism symptoms tend to fluctuate over time.

That tendency might also explain why many kids on placebo also developed new or worse symptoms, he said.

#592

From: Lydia Glider-Shelley <mizlydia@...>
Date: Wed Jun 3, 2009 3:58 am
Subject: Fwd: It's about time! The US Department of Education OCR investigates 64 of 67 school districts in FLORIDA!

ledheadlydia

Offline

http://www.wptv.com/news/local/story/Massages-for-Jupiter-elementary-school-teacher/itXoeoABBk6qqAsEo7P7Cw.cspx?p=Comments

I must admit all the retaliation has been tough to deal with for me and the kids and there were days I thought Alex would never have justice. TODAY I have a different feeling.

http://www.winknews.com/news/local/46668757.html

Confirmed: ST LUCIE COUNTY AND PALM BEACH COUNTY ARE UNDER INVESTIGATION.

SOUTHWEST FLORIDA- Sixty-four school districts across Florida are now under investigation for civil rights violations, including five southwest Florida districts.
The U.S. Department of Education Office of Civil Rights is looking into complaints that the districts may be denying rights to special needs students.
The complaints were filed by Collier ESE Reform, an advocacy group made up of Collier County parents with Special Needs children.

There are 67 school districts in Florida if you want to know if your child's district is on the list call the number below:

Atlanta Office
Office for Civil Rights
U.S. Department of Education
61 Forsyth St. S.W., Suite 19T70
Atlanta, GA 30303-3104

Telephone: 404-562-6350
FAX: 404-562-6455; TDD: 877-521-2172
Email: OCR.Atlanta@...

The story below turns my stomach but you must see it:

Melissa Barton

PS Only a few made my email list SO Please tell everyone you know!!!

#591

From: Joshua Jencks <typhoon1820@...>
Date: Sun May 31, 2009 3:19 pm
Subject: Re: About Seclusion & Restraint on children...

typhoon1820

Online Now

www.myspace.com/anomalous92ty1820

You know, every timne I watch the video of that room on youtube, I get enfuriated... I can't even imagine how the parents of those who lost children in this way feel... If I was one of those parents, I'd probably be in jail for hurting someone or multiple people severley for the way my child was treated... And let alone, what the child is thinking while he/she is being forced into such a place, and being locked in there. It's torture on more than just a physical level, it's dangerously more the mentallity the child suffers while it's happening. I see it as putting a dog in a cage, and beating the cage to anger the dog. Needles to say, the dog is gonna take a chunk out of your ass for it. I think these parents deserve some kind of justice for these horendous crimes... An eye for an eye might make the world blind, but it gives people the message that we aren't fucking around when it comes to our blood.

I am thinking of soooo much, but yet can't think of how to say it. The people behind this kind of thing need to have their faces punched the fuck in. Like these poeple don't have kids of their own??? People are too stupid to realize something until it's too late. How would THIER kid feel if they got locked in a room for hours, and the hell they go thru mentally... Like that parent WOULDN'T be pissed off?? I know I would be well past the point of heated if my kid ever tells me something like this, or that someone hit him, ect... Because there are 3 things that you just don't fuck with:

- A Man's money,

-A man's posessions (car, ect.)

-and a man's family.

While the money and posessions are always replaceable, it still sucks losing that. But NOWHERE near what it's like to fuck with a person's kids or wife or whatever. That will almost guarenteed turn a normal, sane man into a homicidal maniac in an instant.

I'm sorry, but this does not sit right with me. And though I am not a parent myself, I still have friends that thier children absolutley adore the living shit out of me... If you have an emotional bond that strong with a child, then you'll know exactley where and why my thoughts are the way they are. Like any of you wouldn't be pissed as shit if your kid got locked in a room like a cell, or got hit by someone, or anything to that caliber???

Maybe I should start looking into things I can do with kids... Start looking into becoming an advocate of abused children, or something. This just aggrivates me and makes me want to hurt someone for doing some stupid shit like this. What ever happened to just going for a walk with a kid to let him cool off? What ever happened to letting a kid punch a pillow, or screaming into a pillow to vent thier anger? Has the world become so fucked up that we have to lock kids in a room and some kill themselves for it??? I honestly think I found something that moves me more than ever... And I think I need to act upon it, and make my voice heard and make a stand against asshole decisions that will negativley affect our kids.

Gonna start looking into what I can do to get started on this... I found something else that I'm just as passionate about besides music. I look forward to having a son one day, and the many years of enjoying his presence like I do with my friend's kids... The bullshit has got to stop, NOW!!! And I'm making the stand for it!

"Now is the time for me to rise to my feet. Wipe your spit from my face, wipe these tears from my eyes." - "I Will Be Heard", by Hatebreed

The beginning of a new journey is under way... It may take a while, but the wheels are turning now. Wish me luck everyone!

Love always...

Josh in RI

typhoon1820@...

--- On Wed, 5/27/09, larry Lyons <larryd552002@...> wrote:

From: larry Lyons <larryd552002@...>
Subject: Re: [for-and-by-autistics] DisabilityScoop: White House â€˜Very Concernedâ€™ About Seclusion, Restraint
To: for-and-by-autistics@yahoogroups.com
Date: Wednesday, May 27, 2009, 12:47 PM

Damn! Joshua is getting things done for sure! Now even Obama is paying attention.

Way to go Joshua!

Yours,

Larry

--- On Wed, 5/27/09, Lydia Glider-Shelley <mizlydia@gmail. com> wrote:

From: Lydia Glider-Shelley <mizlydia@gmail. com>
Subject: [for-and-by- autistics] DisabilityScoop: White House â€˜Very Concernedâ€™ About Seclusion, Restraint
To: adult-asperger@ yahoogroups. com, "aspergerscircle" <AspergersCircle@ yahoogroups. com>, for-and-by-autistic s@yahoogroups. com
Date: Wednesday, May 27, 2009, 6:15 AM

The Autistic Self Advocacy Network was present at this meeting. Later, we will be posting a summary of the major points we made during the meeting on the topic of restraint, seclusion and aversives.

White House â€˜Very Concernedâ€™ About Seclusion, Restraint
By Michelle Diament
May 26, 2009

http://www.disabili tyscoop.com/ 2009/05/26/ white-house- restraint/ 3423/

On the heals of a government report exposing abusive restraint and seclusion practices used with students who have disabilities, White House officials met Tuesday with representatives of approximately 40 organizations to discuss the issue.

The meeting with community advocates and education professionals was planned prior to the release of a Government Accountability Office report last week at a hearing of the House Education and Labor Committee. The report indicated that thousands of students are secluded or restrained in this countryâ€™s public and private schools each year, including hundreds of cases where the techniques are allegedly abusive or cause death.

â€œThe White House is very concerned about the restraint and seclusion issue, especially the deaths and serious injuries that have taken place across the country. We are committed to working with the secretary of education, Congress and the community to explore solutions to this issue,â€ a senior White House official told Disability Scoop, adding that the meeting Tuesday was â€œvery productive.â€

#588

From: Lydia Glider-Shelley <mizlydia@...>
Date: Fri May 29, 2009 8:16 pm
Subject: Re: The Argonaut: Autistic man uses art walls as means of self-expression

ledheadlydia

Offline

Wonderful! See if you can get a snapshot of yourself with him and the art, to upload to the group!
: )

On Fri, May 29, 2009 at 3:34 PM, larry Lyons <larryd552002@...> wrote:

I go to Venice every two weeks. I don't know where the art walls are though. I must find out, because I want to see Dumas.

Yours,

Larry

--- On Fri, 5/29/09, Lydia Glider-Shelley <mizlydia@...> wrote:

From: Lydia Glider-Shelley <mizlydia@...>
Subject: [for-and-by-autistics] The Argonaut: Autistic man uses art walls as means of self-expression
To: "Lydia Shelley" <rainbow.websites@...>
Date: Friday, May 29, 2009, 11:39 AM

I would love to turn Hollywood Beach into an "East Coast Venice Beach"

If the city would sell permits for artists, musicians and street performers to use certain areas it would generate revenue for the city, right?

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#587

From: larry Lyons <larryd552002@...>
Date: Fri May 29, 2009 7:34 pm
Subject: Re: The Argonaut: Autistic man uses art walls as means of self-expression

larryd552002

Offline

I go to Venice every two weeks. I don't know where the art walls are though. I must find out, because I want to see Dumas.

Yours,

Larry

--- On Fri, 5/29/09, Lydia Glider-Shelley <mizlydia@...> wrote:

From: Lydia Glider-Shelley <mizlydia@...>
Subject: [for-and-by-autistics] The Argonaut: Autistic man uses art walls as means of self-expression
To: "Lydia Shelley" <rainbow.websites@...>
Date: Friday, May 29, 2009, 11:39 AM

I would love to turn Hollywood Beach into an "East Coast Venice Beach"

If the city would sell permits for artists, musicians and street performers to use certain areas it would generate revenue for the city, right?

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#586

From: Lydia Glider-Shelley <mizlydia@...>
Date: Fri May 29, 2009 6:39 pm
Subject: The Argonaut: Autistic man uses art walls as means of self-expression

ledheadlydia

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http://www.argonautnewspaper.com/articles/2009/05/28/news_-_features/top_stories/1a.txt

I would love to turn Hollywood Beach into an "East Coast Venice Beach"

If the city would sell permits for artists, musicians and street performers to use certain areas it would generate revenue for the city, right?

Autistic man uses art walls as means of self-expression

BY GARY WALKER

The electric, at times carnival-like atmosphere at Venice Beach holds a special meaning for those who live and work there. It is often a place that is abundant with creative expression, fused with the entrepreneurial spirit during the day and resplendent with picturesque sunsets in the late evening. It is a place of many things for many people.

For Pierre Dumas, it has become like a second home, somewhere he can feel alive, with therapeutic benefits as an added bonus.

Dumas, 58, is autistic. While he cannot speak, he has found a way to communicate through art. And the Venice Arts Walls have served as his canvas to self-expression, which has in turn lead to the beginning of a progression of social interactions with fellow artists at the art walls and dramatic improvements in his everyday life.

“For autistics, art can often be very therapeutic, even if it is not part of a prescribed course of therapy,” says Dr. Paula Pompa-Craven, a psychologist who is familiar with Dumas’ case.

Art therapy has been used to rehabilitate addicts and is often employed with children who are autistic.

While Dumas, who was raised in Westchester, is not using art in a controlled clinical setting, it can still have great benefits for him, Pompa-Craven says.

“I don’t think that you have to be in a clinical setting for an approach to be therapeutic,” the psychologist, who is also an autism spokeswoman for Easter Seals of Southern California, told The Argonaut. “Being part of a community can be therapeutic.”

Dumas, accompanied by his life skills coach Eric Tapia, visits the graffiti wall area off of the Venice Boardwalk on weekends, an experience that both seem to enjoy.

“When he’s out there, you can really tell that he’s having a good time,” said Tapia, a budding artist who began coming to Venice Beach as a teenager. “Pierre really gets excited when people pay attention to his (art).”

Autism Spectrum Disorder (ASD) or autism is a developmental disability considered the result of a neurological condition affecting normal brain function, development and social interactions. It is the fastest growing developmental disability, increasing at a rate of ten to 17 percent annually, according to the Centers for Disease Control.

As many as 40 percent of autistic patients never learn to speak, and in many cases have significant problems developing nonverbal communication skills, such as eye-to-eye gazing, facial expressions, and body posture.

“There is a commonly held belief that art-making is beneficial to people (particularly children) with ASD due to their intense sensory needs (especially visual and tactile self-stimulation), often nonverbal nature, and need for more visual, concrete, hands-on therapies,” says Nicole Martin, a Missouri art therapist on her Web site, www.arttherapyandautism.com/.

Tapia, 24, noticed that Dumas became interested in the art walls after several trips to the beach as weekend outings as an alternative to working on arts and crafts at Dumas’ home in Culver City.

“You can tell by his facial expressions that he is trying to communicate with me and others when he’s (painting at the art wall),” Tapia said. “At first he would get very nervous around other people, but now he’s having fun hanging out with other artists and muralists.”

For the last three years, Dumas has lived with two other men, and according to those who know him best, he has progressed at a rate that no one had previously thought possible.

Yvette Beaird, Dumas’ sister, is a witness to those changes.

“He has changed so much,” she said. “He can prepare sandwiches for himself and do certain chores, which we thought would probably never happen.”

Prior to arriving at the home in Culver City, he was living in Costa Mesa in a more controlled environment. But since he moved to his new residence and began visiting the art walls, Dumas’ social skills have improved by leaps and bounds, says Beaird.

Beaird, who lived in Westchester through her high school years, mentioned a visit to her mother last December, when her brother shocked the family when he did something out of character.

“He called my mother ‘mama,’” she remembered. “And when we told him that it was time to go, he started crying.”

Pompa-Craven says interacting with his fellow artists at the art wall has done wonders for Dumas’ development.

“Being part of a community can be very therapeutic,” she said. “Pierre has grown by leaps and bounds. His eye contact, an important sign for someone with autism, has increased dramatically, and part of that is due to his family support and the opportunity to express himself artistically.”

The Venice Art Walls, like practically all arts venues, could be in jeopardy due to the city’s economic predicament. Since 2007, the city has given $35,000 to the art wall program, which pays for onsite supervisors who monitor the activity of the artists and provide permits for those who come to express themselves. Artists and muralists who wish to use the walls are required to have permits, which are issued onsite for one day.

Stash Maleski, the curator of In Creative Unity Art, a Venice-based art production company specializing in murals and live painting events, says that the walls have been an oasis for budding artists like Dumas and other muralists who use the space as a creative outlet.

“There were businesses and residents who complained about graffiti artists who were tagging their property before the art wall was built,” Maleski explained. “But what we’ve seen since the permitting plan was implemented is a higher quality of art and an observance of the rules, along with mentoring by some of the more experienced artists.”

Dumas has been the beneficiary of this community of artists, and that has undoubtedly played a role in his continued social development, says Pompa-Craven.

“There was some doubt initially about him being able to be a functioning member of the community,” the doctor said. “Being able to socialize with others in a community that accepts him has been very instrumental in his social growth.”

Maleski is hopeful that his organization will be able to raise additional funds to keep the art wall open.

“In previous years we have been able to raise additional money by fundraising, but with the budget deficit, the program is in jeopardy,” said Maleski.

The arts program is funded until August, but it is unknown whether it will be renewed by the city for another year.

For now, Pierre Dumas has found a home among the sand, sun and the Venice Art Walls, a place where self-expression can serve as therapy as well as the thread that can connect people from many walks of life.

#585

From: Lydia Glider-Shelley <mizlydia@...>
Date: Fri May 29, 2009 6:25 pm
Subject: Fwd: Somewhere Inside, a Path to Empathy

ledheadlydia

Offline

http://www.nytimes.com/2009/05/17/fashion/17love.html?pagewanted=all

Somewhere Inside, a Path to Empathy

By DAVID FINCH

Published: May 15, 2009

Skip to next paragraph E-mail: modernlove@...

IT wasn’t working, any of it. Our third year of marriage threatened to be our last. I’d become cynical and withdrawn, obsessive and preoccupied, dismissive and unhelpful.

“I don’t know when things got bad,” Kristen said, wiping away tears. “I feel like I’ve lost you and I don’t know what will bring you back.”

In reality she hadn’t lost me. She’d found me. The facade of semi-normalcy I’d struggled to maintain was falling away, revealing the person I’d been since childhood. I didn’t even know what was wrong with me, though my wife, a speech pathologist who works with autistic children, had her suspicions. Even so, it would be another two years before she would put all the pieces together and attach a name to what was ruining our marriage: Asperger’s syndrome.

During Kristen’s first few years of practice, she worked only with severely autistic children. But as she expanded her clientele to include higher-functioning kids, she started learning more about Asperger’s syndrome, a comparatively mild autism spectrum disorder characterized by egocentricity and impairments in communication and socialization. That’s when she started seeing parallels to my behaviors.

One evening after we put the kids to bed, Kristen approached me with a smile, wrapped me in a hug and asked me to come downstairs to her office. First she allowed me to complete my 8:30 p.m. routine, fully aware of how essential it is to my peace of mind: circle the downstairs, note which lights are on, and stare out the front window, visually lining up the neighbors’ rooftops. I finally joined her at her desk, where she sat at the computer, ready to administer an online Asperger’s evaluation.

Looking somehow clinical in her pajamas, Kristen instructed me to answer the questions honestly. No problem, since I’m honest to a fault when I choose to speak to people. For the next two hours, she led me through questions that at times had us both laughing with recognition:

¶Do you often talk about your special interests whether or not others seem interested? Who’s not interested in cleaning-product slogans?

¶Do you rock back and forth or side to side for comfort, to calm yourself, when excited or overstimulated? Where’s the hidden camera?

¶Do you get frustrated if you can’t sit in your favorite seat? Friendships have ended over this.

And on it went.

During the years Kristen and I dated, I was on my best behavior. When I slipped, she seemed to find my eccentricity endearing. I remember her laughter upon discovering dozens of pictures I had taken of myself to see what I might look like to other people at any given moment: me watching TV; me about to sneeze; me on the toilet, looking pensive.

She loved the story of how I took an emergency leave from work to boil my glasses after they had fallen from my shirt pocket in a men’s room stall. She found it pitifully charming when I would stand alone at parties, kind of dancing, or follow her from room to room, unable to engage with anyone else.

That’s just how it goes with Asperger’s. Many of us who have the disorder, identified by the Austrian pediatrician Hans Asperger in 1944, could probably pass for normal if it weren’t for three defining characteristics: egocentricity, odd and sometimes repetitive behaviors, and an obsession with a special interest.

The obsession tends to make us experts in strange subjects (for me, motorist regulations, the characteristics of sounds, and the behavior of cattle, among others), with an enthusiasm for discussing them at length at cocktail parties, oblivious to audience interest. In my case, a successful cocktail party requires scripting my conversations in advance.

On a friendly level, and for short periods of time, I was able to sustain a wonderful version of myself. A casual girlfriend might have dismissed my compulsion to arrange balls of shredded napkin into symmetrical shapes as being idiosyncratic, or even artistic. But Kristen was living with me, and she had become increasingly skilled in assessing autism spectrum disorders. There was no longer anywhere for Hyde to hide.

She started observing my unusual behaviors — rigid adherence to routines, unusual reactions to social stimuli, conditional regard for the needs of others — as I became less capable of hiding them. Before long, my endearing quirks multiplied and became exponentially more annoying until eventually her life was flooded with my neuroses.

As I exited yet another gas station without getting gas, she asked, “Because it has an odd number of pumps?”

At a Cubs game, after I’d become overly attached to a friendly group of guys sitting near us, she said: “Yes, they were fun to talk to, but I don’t know if those guys want to be your friends. No, you may not ask them.”

And annoyed by my constant questioning about how long the Thanksgiving feast at Aunt Deb’s might last this year, she snapped: “Why does it matter how long the dinner will be? I have no clue. None. Get over it.”

Ashamed by my seeming insanity, I withdrew until our life together became long car rides without conversations or laughter, silent evenings watching TV in the same room but feeling worlds apart, months without any real connection.

But that day in Kristen’s office was a watershed moment for me, and ultimately for us. As she continued her evaluation, I laughed and cried as the questions so perfectly revealed me. My score: 155 out of 200. That meant, as Kristen put it, “a whole lot of Asperger’s” — an armchair diagnosis that would later be seconded by a health-care professional.

I’d spent two decades trying to understand why I didn’t fit in. Now I had my answer. As a control, Kristen evaluated herself. Her score: 8.

With the data on the table, it was obvious. But naming my problem was one thing. Fixing it was something else altogether. How does someone with Asperger’s rid himself of the very coping mechanisms that allow for day-to-day functioning?

Autism spectrum disorders are not cured with medication, but their associated behaviors can be worked with. What I needed initially were communication skills and a sense of empathy, neither of which, in my case, had been factory-installed. Fortunately, I was living with a highly qualified therapist with a strong motivation to help. Her objective: re-invent our marriage. Her first mission: figure out how to get me to communicate.

I know: a lot of husbands could use a lesson in this, right? For us, however, this went way beyond the typical husband/wife dynamic. Whenever my routine got disrupted, or I was made to do something that didn’t interest me, I would shut down, unable to engage in any constructive way. To get me to overcome this, Kristen started pushing me to my breaking point, backing off just before I was about to snap. If she thought I could handle 10 minutes of a TV show I didn’t pick, but 20 minutes would send me over the edge into meltdown, she would change the channel after 18 minutes.

She also stopped allowing me to swallow my frustrations. I would be sitting on the couch, upset about, say, the messy house, and I would hear: “Come on, Dave. Out with it.”

“What?”

“Your jaw is clenched and you haven’t spoken all night.”

Minutes would pass as she stared at me.

“All right, damn it, look, this place is a mess! Anytime I need to walk anywhere I’m stepping on books and clothes and toys and there’s piles of laundry on the chairs that need to be folded. I don’t see how this is ever going to work if we can’t keep a clean house.”

So we worked on how to vent constructively, a process that began with her actually having to explain to me why my insolent behavior might upset people. Positive changes — me talking reasonably about a problem — were rewarded with her newfound joy in being in my company, which is what I craved more than anything.

A few months later, the same conversation sounded more like this:

“What’s the matter, Dave?”

“The house is such a mess, you know? It’s frustrating. Doesn’t it seem like we’re barely able to keep a handle on things?”

“Well, sure. We have two toddlers and you work really late sometimes. I can’t keep them entertained, educated, on schedule and keep up with the housework. Something’s got to give, and I prefer it not be my time with them.”

“Fair enough.” Then something occurred to me. “I can help if that’s what you need.” Duh.

“That would be great. Actually, you could have picked up this room instead of sitting on the couch, pouting.”

“Right.” (“Pick up messes. Don’t pout,” I wrote in my Journal of Best Practices.)

Acquiring empathy seemed a taller order, given that my Aspergerish point of reference is myself in every circumstance. (Someone just slipped and killed himself in the men’s room? I see. How long until they get him out of there so I can go?) But I’ve learned that people can develop empathy, even if by rote. With diligent practice, it can evolve from a contrived acknowledgment of other people’s feelings to the real thing.

To that end, I started asking Kristen how her day was and then paying more attention to her body language than her words. (Occasionally I would have to ask if I was reading her correctly.) If I sensed she was tired, I would take the kids out so she could have quiet time. If she seemed really burned out, I would offer to give her a foot massage, or to just listen. Soon these started to feel like real rather than manufactured emotional responses.

WE’RE not out of the socially crippling woods yet, and we probably never will be, at least when it comes to my fixations and repetitive behaviors. Just the other day Kristen heard me reciting shampoo ingredients in the shower and quacking when I got to the unpronounceable “methylchloroisothiazolinone” (the two short quacks reinforced the rhythm of the list, and frankly, sounded hilarious).

But over all I’m a good patient, and we’ve made steady progress. We’ve even reached a therapeutic milestone. When something is wrong, Kristen is able to whisper to me those three magic words: “Can we talk?” And instead of shutting down and freezing her out with silent brooding, I’m able to provide an equally magical response: “Yes.”

David Finch lives outside of Chicago and works as a marketing engineer for a semiconductor manufacturer.

#584

From: "Larry D. Lyons" <larryd552002@...>
Date: Thu May 28, 2009 5:02 pm
Subject: Re: Gattaca (was: Autism Research at Columbia)

larryd552002

Offline

--- In for-and-by-autistics@yahoogroups.com, Lydia Glider-Shelley <mizlydia@...>
wrote:
>
> It's on "On Demand" free movies this month. If you don't have Comcast with
> that service, perhaps a friend does. Otherwise, order it from the library.
> If the local branch doesn't have it, you fill out a form and they'll call
> you when it arrives from another branch.
>

Thanks Lydia,

I only have dial-up, so I think I'll buy the movie at Amazon.com.

Yours,
             Larry