SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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Tuesday, December 31, 2002

TREATMENT

* New Jersey Takes Lead In Confronting Autism

* Another Perspective From NJ: Parents Fear Possible Vax-Autism Link

AWARENESS

* 'The Secret Sharer' in People Magazine

* Autistic Teen Shows Artistic Talents

* One Little Boy's Priceless Words

EDUCATION

* Report Targets Special Needs, Early Intervention Programs Tripled

* Charter School Explored for the Autistic

* 'No Child Left Behind' a Misnomer?

* Husband of Arrested Tenn. Autism Teacher Talks

TREATMENT

New Jersey Takes Lead In Confronting Autism

Researchers are challenging assumptions about the disorder

Catherine Wersinger remembered the day she held a cup of juice in front of her son Peter, then 2 1/2 years old and diagnosed with autism.

"Say juice, Peter," she called out. "Juice. See, juice! Juice! Just say, 'juh' 'juh!' Can you say, 'juh'?"

Her bright-eyed boy stood stone-faced. He could not say one word. Not mama. Not dada. Not juice.

Today Peter is among the first autistic children being treated by a center that is paving new ground in the treatment of this mysterious and devastating disorder, one that many believe is on the rise in New Jersey and elsewhere. The number of children classified as autistic by New Jersey school officials has tripled in less than a decade and is now close to 4,000.

Autism hinders a child's ability to communicate and form relationships. The most profoundly affected live in a world all their own, obsessively playing with toys, perhaps, or bursting into uncontrollable rages.

An explosion of research -- much of it pushed by parents of autistic children, who have become a potent force -- is challenging assumptions about the disorder and moving New Jersey to the forefront of autism research.

· Doctors at the Autism Center at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School in Newark are researching the physical symptoms common to many children with autism -- allergies and asthma, eczema, epilepsy, sleep problems and gastrointestinal disorders. Researchers there believe these physical ailments parallel what is going on in the brain.

· Researchers at the Autism Center also are working with the U.S. Centers for Disease Control and Prevention on one of the largest and in-depth autism surveys ever undertaken. The aim is to determine the prevalence of autism in New Jersey. The first data could be available in the fall.

· Researchers at the Robert Wood Johnson Medical School in New Brunswick are examining neurological toxins among autistic children. The Center for Neurotoxicology and Exposure Assessment will examine toxic exposure in autistic children who are 24 months to 36 months old.

Improvement

The Autism Center opened just eight months ago. Doctors there see autism as a medical disorder, not psychiatric or behavioral. They have treated autistic children for their physical ailments. And, in a remarkable turn, some then improved eye contact or behavior. A few began talking for the first time.

One of them was Peter Wersinger.

Doctors at the Autism Center discovered that Peter was allergic to milk. He was put on a special diet. Doctors also prescribed essential fatty acids, a common over-the-counter supplement. Soon after, Peter began saying his first words. Doctors then prescribed Singulair, a common asthma medicine that blocks leukotrienes, compounds that play a role in inflammation and allergic reaction.

"Two weeks later Peter began forming sentences," said Catherine Wersinger. "I don't know why it is working, but I can't disregard the fact that his development has blossomed." She also credits his teachers at the Wawa House, an autism program affiliated with the Eden Institute in Princeton.

Now 3, Peter can tell a visitor that he lives in Marlboro, that his favorite color is red and that Santa Claus brings him presents. He knows several hundred words, sings "Jingle Bells," smiles and readily hugs his parents.

The center has treated 500 patients and is one of the few, if not only, centers that bring together pediatric specialists, such as gastroenterologists and allergists, to examine the physical ailments of autistic children. The director is Sue X. Ming, a slight, 40-year-old pediatric neurologist who could pass for one of the students lugging backpacks around the New Jersey Medical School campus. She said she was always taught that autism was a psychiatric disorder. Education might help some, but really there was little for a medical doctor to do. Besides, autism was rare.

Then in the past decade, parents of autistic children began knocking on her door. Their numbers kept rising. Some of the parents had videotapes of their babies and toddlers laughing and smiling and building up considerably vocabulary. Then, at about 12 months to 18 months old, these children started to regress, losing words and eye contact. Some never talked again.

Ming said more than half of the autistic children she saw had some medical disorder. Tests showed some had unusual swings in blood pressure or heart rate, or undiagnosed seizures. Tests showed super-charged immune systems. Ming began to wonder whether the autonomic nervous system -- which regulates unconscious bodily functions such as the heart rate, digestion and the immune system -- might be involved in autism.

"We began to see autism as a medical disorder. Every part of the body is controlled by the brain. The immune system is controlled by the brain. Everything interacts," she said.

Some children were put on allergy medicines. Some were treated for constipation, reflux or dietary protein intolerance. One child, found to have minute seizures that only showed up on brains scans, was treated with epilepsy medicine. Ming said a handful of the children are no longer on the autism spectrum, meaning their behavior no longer has the characteristics associated with the disorder.

"Some of our children are doing so well," Ming said. "But we don't have enough experience yet. We want to see if the improvements after intervention are sustained after two to three years."

It is not clear whether treating underlying disorders merely helps the children by relieving pain and discomfort, allowing them to become more open to learning, or whether something more fundamental is going on. Ming suspects the latter, at least for some autistic children. She talks of the gut-brain connection.

"There is feedback from the body back to the brain," she said. She will soon start to study the autonomic nervous systems of autistic children with a sophisticated instrument called a neuroscope, which measures such functions as heart rate and brain waves.

Joanne Iveson of Colonia said the center helped her daughter, Ashleigh. At preschool, Ashleigh had to be strapped into her chair. She had few words and poor eye contact. She would pull on her mother's coat if she wanted to go outside, or she would just scream, "Coat! Coat!" She has eczema and gastrointestinal problems.

Ming discovered Ashleigh was allergic to milk and whey, a milk byproduct present in thousands of everyday products. Iveson put Ashleigh, who is 6 now, on a special diet. After three weeks, the child's eczema cleared up. Her eye contact also improved, Iveson recalled. She started to use more words.

"She began to initiate questions. She would say to her sisters, 'C'mon, let's do this.' I remember one time she said something like, 'Can I go with you?' I thought, 'Wow!' I can't say that she is cured, but she is better," Iveson said.

The center also is educating young pediatricians to uncover the earliest signs of autism, prompting parents to begin intensive behavior and speech therapies while the children's brains are still malleable.

B. Madeleine Goldfarb of Livingston remembered when her son Jonathan, who was just over a year old, no longer turned when she called his name. Then he stopped pointing. He ran away while other children sat and listened at story time. She said her pediatrician told her not to worry -- a dismissiveness that other parents and autism experts said is not unusual.

"Then at his second birthday, Jonathan was sitting on the couch. We had all these balloons. I kept saying, 'Jonathan, the balloons! Look at the balloons! The balloons, Jonathan!' But he just sat there. I couldn't reach him. I knew then I wasn't the crazy mother," she said. "We were watching our intelligent, adorable, connected and loving child taken away from us day by day," she recalled.

Something Is Wrong

Agnes Cushing Ruby remembers when she and her autistic daughter, Danielle, pushed their cart through the Pathmark in Rahway and saw two other autistic children.

"When you turn around and realize your child is the third autistic child at the grocery store, then you know something is wrong," said Ruby, who also lives in Colonia. She believes autism is increasing. So do many researchers.

But is it a true rise in the disorder or just in the number of diagnoses? To answer that question, New Jersey epidemiologists, along with the CDC, are now seeking to identify every autistic child born in 1992 and in 1998 in four counties: Ocean, Essex, Union and Hudson.

Researchers know that the number of children classified as autistic by New Jersey school districts has more than tripled in less than one decade. In 1994, the state Department of Education classified 1,042 children from the ages of 5 to 21 with autism. In 2001, the figure was 3,984.

Epidemiologists must discern whether doctors and school officials are better at recognizing the disorder today, or whether in years past autistic children were instead classified as mentally retarded.

Plans for the survey started in 1998, after a CDC survey in Brick Township found that one in 250 children there was autistic. The study also found that one in 175 children was on the autism spectrum. At the time, autism was thought to affect about one in 3,000 children.

Walter Zahorodny, the principal investigator of the $1 million CDC study in New Jersey, said the study will determine whether Brick Township has experienced an autism cluster, or whether the township's autism prevalence actually reflects what is happening all over New Jersey -- or all over the nation. California researchers recently found that autism in that state tripled from 1987 to 1998.

As diagnoses of autism increase, experts and parents are casting about for possible reasons, from childhood immunizations, medications during pregnancy or delivery, genetics, viruses or environmental toxins. The New Jersey Answers for Autism Survey, a separate project funded with $160,000 from the New Jersey Governor's Council on Autism, is seeking information from all New Jersey families of autistic children.

Autism pains families and costs society, too. In New Jersey, tuition for schools for autistic children, a cost borne by the child's local school district, can reach $68,000 each year, according to the New Jersey Department of Education. Some autistic children attend local schools, but require special aides or special classes. Some of these children may require residential care for the rest of their lives.

Chemical Connection

Researchers at UMDNJ-Robert Wood Johnson Medical School in New Brunswick have begun to examine neurological toxins among autistic children. The Center for Neurotoxicology and Exposure Assessment will receive $1.5 million in federal grants each year for five years.

Researchers will examine toxic exposure in autistic children who are 24 months to 36 months old. George Lambert, who directs the study, said autism often arises just as children start to crawl, walk and explore their environment.

"Were they exposed to unusual chemicals? Or are they unusually susceptible to chemicals?" Lambert asked. Scientists will go out to houses to test soil, water and dust. They will vacuum and conduct home health surveys. The study will look at mercury levels in the hair of these children and examine their vaccination history. Some people suspect the mercury used as a preservative in vaccinations could set off autism. Researchers also will examine how far these children's homes are from underground chemical storage tanks, for instance, and their distance from toxic waste dumps.

Lambert suspects there is an actual rise in the prevalence of autism.

"People in the field feel they have just haven't seen these numbers before. If there is an increase in autism, we probably are not seeing altered genes," Lambert said. "That means it has to be something in the environment. We hope to possibly get at some causes."

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Another Perspective From NJ: Parents Fear Possible Vaccine Link To Autism

Sharon Oberleitner is facing a parent's nightmare.

She's convinced her two children developed autism because of vaccines they received and believes that having them immunized against smallpox will make their conditions worse.

"I'm hoping there's not a war with Iraq and that there isn't any use of biological weapons," said the Princeton Township resident. "I don't want to have to make a decision on whether to vaccinate my children and put them at risk, but I don't want them to get smallpox either. It's very scary," she said.

President Bush's move toward resurrecting wholesale smallpox inoculations for the first time since the 1970s comes as the nation's vaccination program is under increasing questioning - mostly from parents of autistic children.

Questions abound whether the vaccines themselves or thimerosal, a mercury-containing preservative used in many of them from the 1930s until 1999, may be a cause of autism, a neurological disorder that can leave children unable to communicate with or relate to other people.

The debate rages in scientific circles, courtrooms and the halls of Congress, where lawmakers last month mysteriously slipped into the homeland security bill signed by Bush a provision protecting Eli Lilly & Co., the maker of thimerosal, from lawsuits.

But the head of the Eden Family of Services in West Windsor, one of the nation's leading treatment centers for autistic children, said parents' concerns about vaccines are unfounded and that the benefits of inoculations far outweigh any risk they may present.

"There are a lot of myths out there about vaccines and autism," said Eden President David Holmes.

"You have parents who are desperately searching for answers as to why and how their children have autism," he said. "There is a small, but vocal faction that sees vaccines as a culprit.

"They were focused on the MMR (measles-mumps-rubella) vaccine as a cause, but scientific studies have shown there is no link. Now they're focused on the thimerosal, and so far the studies are showing there's not an autism link there either," Holmes said.

"You can't help but feel for them. They're clutching for whatever they can, but there's a much larger consideration."

-- -- --

Recent studies, including one of 500,000 children in Denmark published in the New England Journal of Medicine last month, have found no link between the MMR vaccine and a dramatic rise in autism cases in the United States.

And a small, but groundbreaking study of infants who received vaccines containing thimerosal published in a British medical journal earlier this month found the levels of mercury in their blood was within federal safety limits.

Parents and some scientists have theorized that a buildup of mercury from vaccines may have led to children developing autism.

Holmes said the question of the effect of mercury in vaccines needs to be explored further but said he is looking at the larger picture.

"You have to look at the millions and millions of children in the United States who have been saved from a slew of devastating or fatal diseases because of our vaccination program," Holmes said. "That's a far larger number than any children who have had bad reactions from the vaccines.

"There are always questions when you talk about vaccines, and those should be investigated and answered to make the program safer, but the overwhelming benefit of these medications far exceeds any risk there may be."

Holmes said he is not concerned about the prospect of the United States resuming a smallpox inoculation program. "There's a legitimate threat from biological weapons, and we should be prepared," he said.

"Children who already have autism aren't going to become worse if they are vaccinated for smallpox," Holmes said. "Autism doesn't get worse."

-- -- --

Smallpox has not been seen for decades, but officials fear it could be used in defense by hostile countries or as part of a terrorist attack.

The last U.S. case was in 1949, and the last anywhere else in the world was in 1977. The disease was declared eradicated globally in 1980. Routine smallpox vaccinations for children in the United States ended in 1972.

So far, Bush has ordered about 500,000 military members in high-risk areas to receive the smallpox vaccine and has said vaccinations will be made available to about 500,000 health care workers around the country.

While he is not yet calling for all Americans to receive the vaccine, Bush has said those who want it will be able to get inoculated in 2003.

The move to restart the smallpox vaccination program coupled with questions by parents and researchers about the possible link of thimerosal and autism has been music to the ears of trial lawyers, who have filed lawsuits against Eli Lilly and other manufacturers and are looking to drum up additional clients for what they see as billions of dollars in damage claims.

"What we have at the moment is a temporal correlation, which is enough for us to look to find potential plaintiffs," said John Sakson, the co-managing partner at Stark & Stark in Lawrence, which is working with a Texas law firm and earlier this year ran television ads seeking parents of autistic children as clients for possible lawsuits.

Stark & Stark signed up hundreds of potential clients but has not yet filed any lawsuits. "We need to make sure the science is correct for us to make a claim, and then there's the matter of the lawsuit protection that Congress put in for Eli Lilly," Sakson said. "That will have to be tested first."

-- -- --

Under the legislation, thimerosal claims would be limited to the federal Vaccine Injury Compensation Program, which limits damages and severely restricts who can sue vaccine manufacturers.

Members of Congress are working to lift the litigation protection that was included in the homeland security legislation.

"We've had a number of meetings with parents groups and with other members of Congress to see what we can do about it," said Nick Manetto, a spokesman for Rep. Chris Smith, R-Washington Township.

Smith voted in favor of the legislation but was unaware of the provision that was included in the bill at the last minute, Manetto said.

All of the legal and political maneuvering doesn't solve the pending dilemma for Oberleitner, the Princeton Township mother.

"Vaccines are scary. My children are suffering because of them," she said. "Smallpox is scary also.

"If it actually gets to our shores, I don't know what to do. I thought I was protecting my children with the vaccines they've already had, and look what happened."

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AWARENESS

'The Secret Sharer' in People Magazine

A medical wonder, Tito Mukhopadhyay stuns doctors by explaining how autism feels.

Tito Mukhopadhyay sits on his bed flapping his hands, swiveling his head, laughing at nothing. Simultaneously, he tries to explain autism, the brain disorder that causes his tics and spasms. He grabs a pen and paper. "It is an intact mind," he writes, "with a disobedient body."

And that's the miracle: At 14, Tito is able to describe his condition in more precise detail and with more insight than any other severely autistic child ever has. His revelations have given scientists unprecedented clues about this mysterious disorder, which affects as many as 1 in 250 U.S. children to some degree. "Tito's very existence challenges a lot of dogma about autism," says Dr. David McGonigle, a neuroscientist at the University of California, San Francisco. Adds Portia Iversen, an autism-research

advocate: "He shows that autism doesn't mean you can't think, feel and reason."

One assumption shattered each time Tito puts pencil to paper or pecks at his electronic keyboard is that his condition precludes communication. (People with milder autism than Tito's speak and write well, but those with his degree of impairment have been limited to uttering a few words or to typing with physical assistance.) Though his speech is virtually unintelligible, he composes his own vivid poetry and prose. One gusty Los Angeles afternoon, in the apartment he shares with his mother, Soma, he launches into a written soliloquy on the weather, then answers questions in verse. What makes him happy?" A wind like this, and potato chips," he writes. Sad? "A sultry day, and those chips taken away."

A decade ago, when doctors in his native India diagnosed the mute boy who seemed in a world of his own, they told Soma simply to keep him busy. She embraced the injunction with an unwavering intensity and a rare resourcefulness. From morning till night she read Tito literary classics -- Dickens, Twain, Hardy -- and led him in homegrown spelling and math exercises. "I knew more than the doctors," says Soma, 40. "They have studied the books. I am studying my son."

Now experts and educators are learning from Tito. One phenomenon that has long baffled neurologists, for example, is the inability of many autistics to maintain eye contact. Tito chalks up the problem to a glitch in processing sensory input. "I can either see or hear,"he writes. "I can't do both at the same time." As for the rocking and spinning motions that often accompany autism, Tito explains that he can't feel his body unless it's moving -- lending credence to researchers' theories that the brains of autistic people may lack the "body map" that helps healthy people orient themselves.

"Tito has a very complex intelligence," says Michael Merzenich, a UCSF neuroscientist. That was hard to discern when he was a toddler in Bangalore. The only child of Soma, then a chemistry grad student, and her husband, Ram Gopal, 48, a chemical engineer, Tito spent hours twirling in circles and arranging matchsticks in elaborate patterns. Yet Soma saw a mind waiting to be awakened. "I knew that learning was taking place," she says, "but in some other direction."

When Soma noticed Tito staring at calendars at age 3, she showed him how to count the days of the month. Next, by pointing to letters on a paper chart, she began to teach him to spell. She didn't know how much he was absorbing until she read him one of Aesop's fables, then asked what it was about. He spelled out C-R-O-W. "Once it started," she says, "there was no limit." Tito learned to write at 4, with a pencil Soma first fastened to his hand with a rubber band. Soon he was scribbling poetry -- about nature, trains and his own mind -- and eventually drew so much attention that in 1999 a British autism group took notice and sponsored a visit to London.

Later that year Iversen, a cofounder of the L.A.-based Cure Autism Now foundation, invited Tito and Soma to a Northern California conference. Iversen plied Tito with questions about her own son Dov, now 10 -- also severely autistic and nonverbal. "It was like this lifeline to Dov," says Iversen. The foundation helped Tito and Soma settle in the U.S. (Ram remains in India), where scientists at six universities have studied Tito. Iversen asked Soma to try her techniques on Dov, and within weeks he too began to type on a keyboard. Soma soon had nine of Dov's nonverbal autistic classmates at L.A.'s private Carousel School communicating as well. "Every day," says the school's Karen Spratt, "was another miracle."

Soma, who is still supported by the foundation, has become a volunteer at Carousel. "She's systematic and intuitive," says Merzenich. "She knows what kids need." Just ask Tito. Now attending another therapeutic school, he intends to become famous -- for his poetry. "Autism," he writes on his pad, "should not stop me from dreaming."

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Autistic Teen Shows Artistic Talents

Prosser, Wash. Jeremy Tonks was about 4 when he first saw a video of the Nutcracker ballet.

The autistic child was so taken by the film he wanted his parents to draw a particular scene - a mouse in the center of the stage as the camera panned past.

When Steve and Leonora Tonks couldn't fill their son's request to his satisfaction, they handed him the crayon and said, "Draw it yourself."

"He did ... and it was perfect," said Leonora.

That was the first sign that their son, Jeremy, whose first word was a scream, had a gift. It's been apparent ever since.

Thirteen years later, Jeremy's first gallery showing opened recently at Hangups Gallery in Prosser.

Jeremy, now 17, was diagnosed with autism, a neurological disorder that affects social and communication skills. His mother said that even as a baby he rejected normal touching.

"He would push away from me when I tried to hold him," she said. "We would always have to hold him facing away from us."

Jeremy, a tall, beefy young man, is a low-functioning autistic, Leonora said. The Prosser woman also is president of the Autism Society of Washington.

He doesn't socialize well, she said, and conversations are rare, but he will answer simple yes and no questions.

But inside Jeremy's mind are the pictures and stories that magically appear when he picks up a marker, his wood-burning tool or the colorful gel pens he likes so well. His fondness for movies is apparent in much of his art.

The Tonks proudly display drawings and wood burns inspired by Disney characters Lilo and Stitch, the Lord of the Rings, Star Wars and, of course, Harry Potter.

This time of year, Jeremy spends hours in the large shop behind the Tonks' home making Christmas tree ornaments.

Steve cuts the wooden disks and Jeremy then goes to work.

Sometimes he draws on the ornaments before he burns them, other times he just works freehand with the hot tool.

After Jeremy burns in the design, he colors the ornaments with oil pastel pencils.

There are reindeer and Santas, teddy bears and toy soldiers. He never seems to run out of ideas.

"It's amazing how fast he works," said Steve, who coats the finished pieces with a protective clear finish.

So fast, in fact, his parents have had to scramble to keep him in art supplies. "We buy paper by the case," Leonora said. "And markers, crayons, pencils. I had to finally put him on a budget."

One of the most interesting pieces is a mosaic done in construction paper. Jeremy's art teacher, Sandy Graf, had assigned her students to do a mosaic, telling them to use 1-inch squares. Jeremy insisted on using 18-inch squares instead, creating a procession of wizards.

"I watched him use a toothpick and glue to place each piece," Leonora said.

She said the autism may help Jeremy with his art by keeping him focused on the tangible, a frequent characteristic of the disorder.

"English, math ... mean nothing," she said. "They must be able to see and feel."

She also said it's not unusual to find special abilities in autistic people. "Many, like Jeremy, are artistic. Others have perfect pitch."

Leonora said researchers suspect autism is linked to the same genes that make people each a distinct individual.

"We all have genes that make us different, autistic people just demand it," she said.

Copyright 2002. The Associated Press.

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One Little Boy's Priceless Words

tory

In the past 10 months, Steven Demos, 6, has learned a lot. Like how to get juice from the fridge and eat with a spoon.

This is what progress looks like when your precious child is diagnosed with autism, a neurological disorder that severely affects a child's ability to communicate and learn.

But the best thing that's changed in Steven's life today is words. He can say a few now.

"He's starting to speak," says Steven's mother, Linda Demos of North Miami Beach. "The other day, he said, `Mama, I love you,' and I almost fell over. I never thought I'd hear him say those words."

Demos is thrilled and credits extensive therapy with her son's progress. But she still believes what happened to her son wasn't inevitable.

Earlier this year, Steven became part of a lawsuit against the nation's major vaccine manufacturers. Demos and her husband, Nick, believe his autism is linked to vaccinations containing mercury. So do hundreds of other parents around the country who are also suing.

But earlier this month, Republicans added a last-minute provision in the homeland-security bill that blocks efforts to sue vaccine manufacturers. Nonetheless, Demos and her attorney aren't giving up.

"We're going to continue," says Roberto Villasante, a Miami attorney who's leading a large contingent of lawyers in the vaccine suits. "We're not discouraged."

Meanwhile, Demos concentrates on building a life for "my sweet angel." Progress may be measured in baby steps, but at least it's progress.

"I don't have the fear I once had," Demos says. "If I could handle him at his worst, then I can handle the future."

Copyright © 2002, South Florida Sun-Sentinel

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EDUCATION

Report Targets Special Needs, Early Intervention Programs Tripled Limits urged on enrollment

Enrollment of students in special education nationwide has increased by nearly a quarter in the past decade in the face of funding that offers incentives to identify students in need of such services, according to a recent study by the Manhattan Institute.

"Bounty" funding systems that pay per student placed in special education bear much of the responsibility for the rise in enrollment, the report argues. Nearly 12.5 of all students were classified as needing specia l education in the 2000-2001 school year.

In the 33 bounty states, special-education enrollments grew much faster than in those with set or lump-sum funding over the past decade, the report found. One of the 16 lump-sum states, Massachusetts, had enrollment decline from 16.4 percent to 15.5 percent in that period, the report found.

But a higher percentage of those enrolled in Massachusetts special education have more severe problems, as more children are born with disabilities or conditions such as autism.

Early intervention programs, where enrollments have tripled, reflect the trend. There the number of students classified as moderate to severe has nearly quadrupled in a decade, going from 5,518 to 22,661, said Sheldon Berman, chair of the Massachusetts Association of School Superintendents' task force on special education.

With these higher-needs students requiring more intensive services, Massachusetts school districts now spend 20.2 percent of their budgets on special education, up from 17.2 percent in 1990 - not including funds for health services.

With special education expenses continuing to soar, attention is turning to how best to meet the needs. In 2001, 21.4 percent of the state's education spending went to special education, or $1.8 billion out of an $8.4 billion budget, according to Department of Education figures.

Cutting special-education funding as the report recommends would only force school districts to spend money currently allocated for regular education to help special-needs students, said Berman, superintendent of the Hudson public schools.

"The argument around finances is a fallacious one. You may want to create incentives or find lower-cost ways of addressing needs but to create a lump-sum system means only that regular education will be compromised," he said. "Their study is a simplistic look at a very complex issue."

The Manhattan study argues that bounty systems encourage overdiagnosing children and concludes that all states should adopt a lump-sum model or submit to spot checks to ensure all students in special-education programs belong there.

"Right now it's a conflict-of-interest: The same organization that assigns the diagnosis is the same organization that receives the benefit," said study author Jay Greene. "We ought to think about how we distribute funds in a way that does not provide incentives to place students incorrectly in special education."

But local superintendents who have studied the situation in Massachusetts scoff at the idea of curbing special-education funding. They attribute the rise in special-education enrollments not to funding incentives but an increase in the number of needy children.

"I don't know too many superintendents that are trying to put youngsters into special education to garner more money," said Perry Davis, superintendent of the Dover-Sherborn Schools. "This report concerns me because it kind of lays blame, as if public schools are manipulating the system and creating more children that have disabilities."

Other specialists criticized the report for concentrating on funding rather than on exploring how well such programs work, not just for the students placed in them but for those in regular education classes. "The unfortunate thing about special education is that often times the focus seems to be on cost and on the stigma of being classified rather than the effectiveness of the program," said Steven Rivkin, associate professor of economics at Amherst College.

Other researchers, however, agreed with the Manhattan Institute report's findings. In her study of Texas school districts, a similar pattern emerged, said Julie Cullen, an assistant professor of economics at the University of Michigan.

That does not lead Cullen to conclude that students necessarily wound up inappropriately classified as needing special education.

"If you thought there were barriers to students gaining access to special education, you would say it's a great thing. If you thought students were misclassified, you would think it's a bad thing," she said.

Greene, however, suspects that behind these statistics are a number of students placed in special education who should not be there. He notes "learning disability," the most amorphous of the 13 federally recognized categories of special education, accounts for the largest bulk of the increase.

"It's hard to imagine more than one in 10 of students are disabled," he said. "We don't want to wrongly label students as disabled just to get them the help they need."

© Copyright 2002 Globe Newspaper Company.

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Charter School Explored for the Autistic

About a dozen parents of autistic children in Fairfax County, unhappy with the school district's programs, are in the early stages of forming a charter school, one of the parents said. The group's application would be one of the first tests in Northern Virginia of the state's new charter school law.

Ideally, the school would offer children with autism a year-round schedule with intensive instruction from preschool through sixth grade, possibly even a one-to-one teacher-student ratio. Parents are soliciting donations from private foundations to help pay for the extra cost of educating these students for a longer school day and year.

"Even with the same amount of money, we can do a better job than the Fairfax County public schools," said Randy Nicklas, one of the parents working on the charter school.

Fairfax parents of autistic children have been fighting with school officials for several years over the best way to teach their children. A pilot program that taught preschool autistic children by breaking down lessons into small steps and reviewing each one repeatedly was hailed by parents but discontinued by school officials last year. They said it was too expensive and not as effective for all students as parents believed.

The application is not due until July 1, Nicklas said, and the Fairfax School Board doesn't have to vote on it until next December.

Loudoun County has received no charter school applications. In Prince William County, the school system is negotiating with a charter school applicant for a linguistics academy that would mix students learning English with English-speaking students who want to learn a second language. No decisions have been made.

Charter schools can operate independent of state and local regulations but are financed by the local school district where they are based. Supporters say a charter school could spark creativity and innovation that would improve the entire school system, but opponents say the schools would siphon money from public schools without the same oversight.

Autism is a neurological disorder that comes in many forms and degrees of severity. It usually appears during the first three years of life and impairs a child's communication and social skills. School officials said they would welcome a charter school application to help autistic kids.

"I say more power to them," said Fairfax School Board Chairman Stuart D. Gibson (Hunter Mill). "If there's a way for them to get the resources that we surely can't provide, I think that's great."

© 2002 The Washington Post Company

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* * *

'No Child Left Behind' a Misnomer?

U.S. policy might alienate disabled

The goal of President Bush's No Child Left Behind is to bridge the achievement gap between disadvantaged students and their peers.

But some educators fear the landmark education reform policy will alienate a sometimes forgotten minority: the severely mentally disabled.

At last count, there were 1,897 severely physically or mentally impaired students in Arizona. Students deemed significantly mentally handicapped function at or below readiness, or kindergarten standards. The No Child Left Behind Act would require these students to take standardized tests at grade level.

Jane Hecker, coordinator of elementary special education programs at Gilbert Public Schools, called the legislation's goals unrealistic and harmful.

"For children with lower cognitive abilities, you're setting those kids up for failure," Hecker said. "Every child needs to feel they are successful, and that's one of the underlying tenants of testing the child at their level."

In January, Bush signed into law the most sweeping reform since the Elementary and Secondary Education Act of 1965. Its premise is that every child will improve in school through better teaching practices, more options for parents and increased accountability at the state and local level.

Standardized testing is a way to keep schools accountable. This year, schools must begin administering annual tests in grades 3-12. If schools do not show adequate yearly progress as benchmarked by national standards, they will be penalized financially.

Gina Johnson is president of Sharing Down Syndrome, a non-profit agency that educates and offers support to parents of children with Down syndrome. Her son, David, 19, is a senior at Gilbert High with Down syndrome. She, too, is concerned about the implications of standardized testing at grade level.

"For those children (with disabilities), you're labeled as one who doesn't fit the mold," Johnson said. "For some, it (testing at grade level) might be just another measure that they don't fit."

Like other students, those functioning below readiness levels have been taking the AIMS test - Arizona's Instrument to Measure Standards - for several years. Only, they've been taking AIMS A, an alternative version focusing on expressive language skills, pre-math skills and basic number concepts.

Eligibility of AIMS A is determined by the child's Individual Education Plan (IEP) team, whose rights are protected under the Individuals with Disabilities Education Act of 1975.

Incongruency surfaces between No Child and IDEA when the new law overrides the IEP recommendations.

Lynn Busenbark, director of program support in the state department of Exceptional Student Services, anticipates Congress will resolve that and other inconsistencies during IDEA's five-year review in 2003. "Until IDEA is reauthorized and we get some congruence, we're in a quandary," she said. "Right now, we're stuck between those laws and don't know which ones to pay attention to."

State and local administrators are generally at a loss on how to approach the new legislation. One of its major tenants is every child will be proficient in core subjects by the 2013-2014 school year.

"You hate to put a limit on what any child can do, but you also need to be realistic," Hecker said. "You have to look realistically at a child's disability and what they can achieve."

Copyright 2002, The Arizona Republic.

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Husband of Arrested Tenn. Autism Teacher Talks

A Wilson County man's 17-year marriage is wrecked by his wife, a 14-year-old boy, and a month-long run from the law.

We're learning more about what might have prompted a Wilson County woman to run off with the [autistic] teenager she was home-schooling. Cindy Guthrie and her young counterpart were picked up Sunday outside Albuquerque, New Mexico. They had been on the run since December first.

Detectives in Lebanon said media coverage helped them nab Cindy Guthrie after a cross country trek with a teenager.

"She was attempting to get charity from this charity company. And the person that she was attempting to get charity from recognized the name from the media," said Detective James Whited.

But is this mother of two capable of being a sexual predator? Her husband has his doubts.

+ Article continues at:

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Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith

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