FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

ADVOCACY

* Action Alert: Drug Companies Out to Gut Vaccine Compensation Reform

RESEARCH

* Lay Summary Explanation of Murch, "Wakefield" Study

EDUCATION

* Challenges of Special Ed Extend To Finding Teachers

CARE/TREATMENT

* Editorial: Mental Health Parity

* British TV Shows 'Linked To Pond Drownings'

* Asher's Assuring Progress Is Kiddie Garden's Reward

* Drugs For Ossie Children, US-Style, On The Rise

AWARENESS

* China Has 400,000 to 500,000 Children Suffering from Autism

* Xingxingyu: Boon for Families With Autistic Children

* Readers' Posts

Action Alert: Drug Companies Out to Gut Vaccine Compensation Reform

[From from New York Attorney John F. McHugh.]

As you may know Congressman Dave Weldon of Florida and Jerold Nadler of New York had introduced a bill to make obtaining compensation under the Vaccine Injury Compensation Program easier. Today I was informed by Stuart Burns. Congressman Weldon's legislative director, that the bill, now sponsored by Dan Burton of Indiana and Henry Waxman of California, is in trouble. The vaccine manufacturers have lobbied heavily against it.

The Bill is HR 3741, the National Vaccine Injury Compensation Program Improvement Act of 2002. Mr. Burns tells me that to get this bill passed we need to have a major letter writing campaign by parents of injured children directed both to the representative and to the

J. Dennis Hastert, Speaker,

United States House of Representatives,

The Capitol,

Washington, D.C. 20515.

Fax: 202-225-0697.

If we do not do this, the bill has only about a 30% chance of passage. Local representatives need to be urged to co-sponsor the bill. The Speaker must be urged to bring the bill up for a vote. If possible parents should visit their representative's district office and if possible ask to speak to the representative personally.

The bill provides for the payment of the costs of medical experts from the trust fund as they are incurred. This provision will be particularly useful to the parents of Autism Spectrum children as the tests needed to link this type of disorder to a vaccine are expensive and hard to find. Further, expert witnesses who are willing to testify in vaccine cases are also hard to find as many doctors fear ostracism by their profession if they

do so. It is equally useful to parents who do not have surplus funds as

the medical costs which must be incurred to prove even a case supposedly automatically covered by the Vaccine Act can be considerable.

The bill also deals with the statute of limitations problem. Most parents and practitioners do not connect their child's disability to a vaccine immediately. Sometimes medical practitioners never make the connection. Therefore, many parents do not learn of either the cause of their child's disability or of the compensation program until the limitations period has expired. This bill extends the period from three years to six years and allows anyone with a claim which has now expired to file within two years of the bills becoming law.

This situation is urgent. Thank you for your assistance to these Congressmen who have taken up this cause, notably a coalition of conservative Republicans with Liberal Democrats. If these diverse thinkers can see the need for this Bill, those of us most affected must help. A suggested text of the two letters now needed is following, but if you can draft your own that would be preferable, particularly if you can explain your own situation emphasizing that you are a constituent of the representative addressed.

* * *

Lay Summary Explanation of Murch, "Wakefield" Study

This study is part of a continuing investigation into a novel gastrointestinal pathology in children with regressive autism. Inflammatory pathology has already been confirmed in the large intestine and upper gastrointestinal tract by independent investigators.

The current study confirms the presence of immunopathology in the mucosal lining of the small intestine. It identifies the unique nature of the pathology when compared with developmentally normal children with normal intestinal tissues, those with known inflammatory pathologies, and children with mental retardation without autism.

The study reports the detection of an antibody in the circulating blood of affected children that binds to a target(s) molecules on the membrane of the epithelial cells that line the intestine. The antibody appears to bind in the same distribution as a chemical – complement component C1Q - that forms part of the activated inflammatory cascade. The co-localisation of these two molecules at this site is unique to the children with regressive autism and indicates a likely autoimmune basis to the intestinal disease, in which the bodies’ immune system turns upon itself to cause tissue injury.

Autoimmune diseases tend to occur in families, and are often linked to a genetic susceptibility that requires an environmental trigger to initiate and propagate the disease itself. The pathology in these children is consistent with a virally driven autoimmune entero-colitis (intestinal inflammation), and the study adds an important piece to the evolving jigsaw of autistic regression, intestinal disease and the presence of measles virus in many affected children.

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* * *

Challenges of Special Ed Extend To Finding Teachers

Hundreds of thousands of American students need the benefits of special education, but nearly half of the nation's special ed teachers aren't qualified to provide them, according to a national education group.

More than 30,000 special education teachers nationwide teach without the appropriate license, reports the Council for Exceptional Children, a teachers organization.

"It's pretty dismal," said Lynda VanKuren, council spokeswoman. "You have your inexperienced people or teachers who aren't even prepared to take the special education classes."

In Arizona, the state Department of Education has been under scrutiny, the result of a lawsuit by parents claiming the state failed to meet the needs of their special education children.

"When fully certified teachers can't be found, the vacancies are filled with people on emergency certifications; the law allows for that," said Steve Mishlove, Arizona's director of Exceptional Student Services.

"There is no requirement . . . to have special education training or experience."

Federal laws don't require school districts to inform parents about a teacher's lack of qualifications.

Arizona has granted about 400 emergency credentials this year to help teach some of its 100,000 special education students. Arizona has about 6,500 special education teachers.

Finding qualified teachers is an uphill battle for many reasons, including low pay, a high volume of paperwork, heavy caseloads, lack of support and limited resources.

Kathy Smith, a 30-year special education veteran, is familiar with the job's many challenges. Her 10-hour days include working with other teachers, aides and seven students with multiple disabilities. At lunch, she feeds a student with Down syndrome.

"Some of the students can be very challenging," said Smith, who works at Carminati Elementary School in Tempe. "But your pay is the satisfaction in knowing that you have had a positive impact on students and families."

VanKuren said, "Special education teachers are more likely to leave than general education teachers. It's a hard job, bottom line. It takes our kids a long time to learn."

The state Education Department has intensified efforts to increase the pool of special education teachers by working with colleges and universities on internship programs, upgrading its online job bank, recruiting teachers from other states and applying for a $5 million federal grant.

The grant would be used to hire more teachers, improve special education services at charter schools and implement reading programs.

A typical day

Smith's busy schedule is fairly typical of those who choose to be special education teachers. Her day is organized into half-hour sessions, including teaching sign language to third-graders and working one-on-one with students on reading.

And Smith has developed a lunchtime game for her Down syndrome student.

"Bite number one, let's go," Smith says. The student takes a bite after about two minutes. "Good job," she says. "Bite number two, you know what to do."

After five bites, the student is rewarded with a gulp of chocolate milk. Then the game continues.

Smith works with students from kindergarten through sixth grade who have multiple disabilities, including autism, hearing loss and speech problems. Teaching such a range of students requires creativity.

She develops strategies with other teachers to get students to pay attention. For example, she suggests a kindergarten teacher touch one student and tell him he is off task rather than just communicating verbally. Some students respond better to touching.

Smith also recently developed a color-coded card system to teach sentence composition to a student who may be autistic. The colored cards serve as cues: subjects are yellow, verbs are green, adjectives are blue and articles are orange.

Teachers hard to find

A recent state survey showed that teachers for students with multiple disabilities are in highest demand. But the state also found a scarcity of specialized teachers, such as occupational and physical therapists and autism specialists.

"Even for the lower incidences of impairment, it's still a challenge to find qualified personnel," said Miriam Podrazik of the state Education Department, who helps recruit special ed teachers.

Podrazik recently attended the National Council for Exceptional Children conference, where she found 50 special ed teaching candidates interested in Arizona. Low starting salaries are the chief barrier to recruitment, Podrazik said.

"When you talk to students, the first question they ask is: 'What is the starting salary?'" she said. "So that's a significant hurdle."

The average special education teacher in Arizona earns about $26,000, just $1,000 more than general education teachers.

"So even when they're hired, many leave the field for higher-paying jobs," Podrazik said.

Diane Bruening, director of special education for Chandler Unified, said her district's starting salary for special education teachers is about $32,000.

"Even that salary is pretty miserable for someone with a professional degree," Bruening said.

Podrazik and Bruening said another obstacle is the workload required by the 143-page 1997 Individuals with Disabilities Education Act. More than 60 percent of special education teachers spend a half-day to a day and a half a week doing paperwork, according to a survey by the Council for Exceptional Children.

A long way to go

Karen Deadrick became a special education teacher after she struggled to find adequate services for her child, who is learning disabled.

"Having a child in special education, I know just how difficult it can be," Deadrick said. She works at Westwind Academy charter school in Phoenix.

Despite the job's additional challenges, Smith said special education has come a long way. When she started her career, special education students were institutionalized because few educators knew how to reach out to these students. Federal special education laws were adopted in 1975.

"This is a good time to be in special education," Smith said. "It's hard work and it has its challenges, but people in special education have such an important role they need someone to advocate for them. They need someone to . . . make sure their needs are met."

* * *

Editorial: Mental Health Parity

Schizophrenia? Yes. Malingering? Maybe not

Bucking the insurance industry and business interests who have argued that mandated mental health coverage would add billions to already soaring health care costs, President Bush last week signaled support for increasing insurance coverage for the mentally ill. "Our health insurance system must treat mental illness like any other disease," the president said. Overall, that's good news.

The president is right to support expanded coverage for mental illnesses. Still, the cost concerns raised by business groups cannot be ignored. A bipartisan mental health bill pending in Congress would require companies that offer mental health coverage to do so on parity with coverage they offer their employees with physical ailments.

That means a patient would be charged the same co-pay for a her asthma medicine as for drugs to control her depression; the same deductible would apply for a toddler's visit to the pediatrician for an ear infection as for a suicidal teenager's visit to the psychologist's office.

All that makes sense. But the breadth of the federal legislation should give Congress pause. As currently drafted, the measure would force companies to cover every mental disorder listed in the Diagnostic and Statistical Manual of Mental Disorders, the bible of mental illness. As one would expect, the manual lists things like schizophrenia or manic depression. But it also lists a range of emotional upsets that most people would dismiss as the ordinary stresses of modern life. Among them, jet lag, caffeine induced sleep disorder, malingering, academic and occupational problems.

Rather than forcing employers to provide insurance coverage for this exhaustive list of mental ailments, Congress should follow California's lead. California's 2-year-old mental health parity law limits mandated coverage to only severe mental illness, including but not limited to such conditions as schizophrenia, bipolar disorder, major depressive disorders, anorexia, autism, bulimia and any serious emotional disturbance of a child.

Mental illness is real and can be every bit as debilitating as cancer or heart disease. Untreated, it can lead to complete mental break downs and costly hospitalization. Even the life stress issues can cause extreme pain, even incapacitation. But there is a limit to what employers can realistically afford to pay. The president and Congress can look westward for a sensible balance of compassion and realism.

* * *

British TV Shows 'Linked To Pond Drownings'

Gardening programmes on television may be partly to blame for a sharp rise in the number of children drowning in garden ponds, researchers have suggested.

A study found that while the overall number of children drowning in the UK had fallen over a 10 year period, the number of deaths caused by children falling into ponds had almost doubled.

The researchers said the rise might be due to an increased number of water features in gardens - perhaps inspired by TV gardening shows.

The team, from the University of Wales College of Medicine, the Royal Life Saving Society, and the Royal Society for Prevention of Accidents, compared statistics for deaths by drowning in children aged up to 14 in 1988-9 and 1998-9.

They looked at drownings in baths, garden ponds, domestic pools, private and public pools, rivers, canals, lakes and the sea.

In total, 104 children drowned in 1998-9, compared with 149 in 1988-9.

In all categories, except garden ponds, there were as many or fewer deaths in 1998-9 compared to 10 years earlier.

Eleven children drowned in garden ponds in 1988-9, but this figure rose to 21 a decade later.

Three times more boys than girls drowned during both periods, and autistic children were particularly at risk, the researchers found.

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Asher's Assuring Progress Is Kiddie Garden's Reward

Center honored for its success with autistic boy

When 9-year-old Asher Johnson-Dorman threw loud, raving temper tantrums that lasted a half-hour or more at Kiddie Garden, his after-school child care center, owner Paula Matheos could have said the autistic child needed more than her staff could provide, and shaken Catriona Johnson's world.

"As a parent, you worry that somebody's going to come and say, 'Sorry, his behavior is too bad we can't take him in,'" Johnson, Asher's mother, said. "I'm not hearing that. I'm hearing, 'Let's get technical assistance, let's get more information, let's get a copy of the school behavior plan, let's get more training.'"

Kiddie Garden is one of several child care businesses and programs that were honored last week by the county Child Care Resource Center during the fourth annual Celebrating Successes awards reception.

The event highlighted 65 individuals, child care and early childhood education programs and businesses throughout the county that have made a difference in the life of a child.

Although Kiddie Garden teaches about 70 children each week and is seeking accreditation of its early childhood education program from the state, it is being recognized by the county for helping Asher.

The school, founded in 1996 by Matheos and her husband, George, does not specialize in working with children with special needs, but the award highlights the need for more centers like theirs in Laurel.

The Americans with Disabilities Act provides for special needs children to be able to attend any child care center - it is up to the center to show if there is too much of a burden.

But a 2001 report on care for children with special needs by the Maryland Committee for Children showed many proprietors are reluctant to accept children with special needs in their programs because of liability issues and the costs of adding and training staff members. The industry is burdened with staffing problems of high turnover rates, low wages and few or no benefits.

"They can't afford to hire another staff to be with children one on one ... [for] children with emotional needs. That is a very legitimate thing," said Vickie Scrivener, special projects co- ordinator at the Howard County Child Care Resource Center, who was on the steering committee that produced the report.

"There's a lot involved in every child with a special need, even if it's asthma," she said. "You need a protocol for the child's medication - what sets the asthma off, how severe does it get before I call 911?"

The need for child care is expanding in the county. Census figures for 2000 show Howard County has the highest percentage in the state of children younger than age 5. As the number of centers grows to accommodate the need, child care providers should pay more attention to providing for special-needs kids, said Debbie Yare, program manager for the county's resource center.

Too often, children like Asher, whose behavior is difficult to control, don't stay in one place long, she said.

"Those kids are dismissed from one center, and they're bounced around from center to center," Yare said. "That's why its so wonderful what's going on with Kiddie Garden because they're really working with Asher."

Asher's mother knows that scenario well. Kiddie Garden is the first center that her son, who has moderate to severe autism, has been able to stay in since he was about 4 years old.

When Asher arrived at Kiddie Garden in September, he would wander around the center with no regard for the routine, or he would play alone, counting objects and building with toys, staff members said.

Fascinated with machinery, he loved the hum of the fans coming through the ventilation ducts - so much so that the center incurred high electric bills before officials found that Asher had discovered the thermostat and was turning the fans on at will.

Karen Tracht, Asher's teacher at the center, got help from Project Act, a program of the nonprofit Abilities Network Inc. that trains and provides technical assistance to teachers of special-needs children to help the kids learn and be included. She also asked Johnson questions, and got information from Asher's school to learn the phrases and activities to which he responded best.

Over time, Tracht has learned a few key things about Asher and about communicating with children who have autism - how to use pictures to prepare him for changes in his schedule, and how a pair of safety goggles and a cold Sprite soda make Asher feel more comfortable.

Most important, the staff at Kiddie Garden has better learned how to tackle the biggest challenge with autistic children - drawing them out and helping them socialize.

Now one of Asher's favorite games is one he plays with Tracht. He pretends to be a school bus, slowly swinging his arm out perpendicular to his body like the yellow bar on a bus and holding it there. Tracht waits patiently until Asher tells her she can go.

"Just the other day, he was on the swing with a little girl playing a game they made," Tracht said. "It just took us getting to know him." Copyright © 2002, The Baltimore Sun

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* * *

Drugs For Ossie Children, US-Style, On The Rise

CARTOON:

Mother sits with child across the desk from the

doctor who is writing out a prescripton. She says ". . .and his dad's

never there and he watches lots of telly and he eats junk food."

Doctor replies: "All of which can be fixed with medication."

Australian doctors are following United States trends by prescribing an increasing range of mood-altering and behaviour-controlling drugs to children, according to a survey to be unveiled this week.

Medications for aggression, anxiety and sleep disorders are being given to children younger than three, and some parents are misusing the drugs by giving them to siblings with sleeping problems, the study found.

Little was known about the long-term effects of some of the drugs on children, particularly the mixing of medications, said researcher and Royal Children's Hospital paediatrician Daryl Efron.

"I don't think there is cause for alarm (but) there is cause for concern and we need guidelines on their use," he said. "We need further research to ensure the gaps in research . . . are filled and research catches up with the practice."

Dr Efron said the study tried to discover what was happening with drugs other than Ritalin, the use of which boomed in Australia in the early 1990s. "Ritalin is old news and most people think that it's appropriate treatment for children with ADHD (attention deficit hyperactivity disorder)," he said.

"There were reports from the United States of a big trend using other medications beyond stimulants. Anecdotally, it seemed to have started in Australia."

Dr Efron said there was no national data on the amount of drugs prescribed to children. Data on drugs that are on the PBS, such as Ritalin, did not differentiate between adult and child recipients, he said.

The nationwide survey asked paediatricians and psychiatrists for children and adolescents about their prescriptions of psychostimulants, clonidine, antidepressants, neuroleptics and mood stabilisers in the preceding 12 months, and asked what, if any, drugs they would prescribe in nine hypothetical situations.

The survey was completed in late 2000 by more than 600 doctors (more than 70 per cent of those sent a questionnaire). It will be presented to the Royal Australasian College of Physicians conference in Brisbane on Wednesday.

"It pretty much confirms the impression from anecdotes reported that these trends from the US are being repeated in Australia," said Dr Efron. "There is an increasing menu of psychotropic medication which is being prescribed to Australian children."

+ Article continues at:

* * *

China Has 400,000 to 500,000 Children Suffering from Autism

Statistics show among the 380 million Chinese children about 400,000 to 500,000 are suffering from autism, who need concern and help from the whole society.

Statistics show among the 380 million Chinese children about 400,000 to 500,000 are suffering from autism, who need concern and help from the whole society.

Many children, being the only-one child in their families, are over-protected by their parents, being restricted to a narrow confine of living and lack of exercise for both body and mind. Besides, many parents, not knowing much about children's mind, experience much more problems on children's behavior.

Some children, though "emperor" of the family, are as timid as a mouse on public occasions, some having difficulty in concentrating and others being sluggish in action. In most cases, they are not "naughty" or "awkward", but autistic and in an ill state of mind.

Now the problem of autistic children has roused wide concern from related departments, and three advanced treating centers have been set up in Beijing, an expert said. There have appeared more and more doctors for psychological treatment, hoping to usher autistic children into a warm, colorful reality world.

* * *

Xingxingyu: Boon for Families With Autistic Children

Xingxingyu (Star Rain) Education Institute for Autistic Children, or Xingxingyu for short, is playing an increasingly important role in helping families with autistic children.

Nearly 500 families with autistic children across China have benefited by Xingxingyu, which lies on the outskirts of Beijing, since it was founded in 1993 by Tian Huiping, whose 15-year-old son was diagnosed as profoundly autistic 11 years ago.

Up to now, 10 children who have gone through the school's short- term training programs have been accepted by normal schools and special schools, including Tian's son, who stayed at Xingxingyu for two years.

There are 600,000 Chinese diagnosed with autism, 500,000 of them are children. But other than Xingxingyu, there is no hospital on the Chinese mainland or other facility specializing in care of autistic children.

Tian said that her center does not attempt to cure children with autism. "The most we can hope for is to draw these special- needs pre-school children out of their own world into a normal reality," says Tian.

The facility enrolls special-needs children, aged between three and six, who work with their parents in 10-week training programs that cost 3,000 yuan (about US$361.5). It does not board students, so parents and children have to live outside the school, mostly renting housing from farmers nearby.

As a NGO, Xingxingyu is largely dependent on international donations, said Tian Huiping.

According to Tian, the waiting list is so long that some parents will have to wait until 2003 to get help for their children. "Some of them want to come back for a second training program," said Tian.

Other parents who cannot wait have invited teachers from Xingxingyu to their homes to give lectures on the special therapy advocated by the school.

Encouraged by the success of Xingxingyu, Tian is considering opening a training program for teenage children with autism and their parents.

* * *

Readers' Posts

To parents of school-age children in Ontario with Autism Spectrum Disorders

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We are the custodial grandparents of a ten-year old girl who has a condition known as Lennox-Gastaut syndrome and who displays autistic behavior. We are in need of any resources near Kentucky which may offer training and respite care. Please respond to: Wallyg8er1@aol.com

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Moving to the Houston area end of July. My son is 7 years-old with mild/moderate austism. Looking for contacts for support groups, advice on schools, anything that will help. I am a single mom and have been struggling for five years trying to get him the help he needs. I hear that the system in Texas is better than here in Colorado. tlmwilson@yahoo.com Tamra Wilson, mother of Henry.

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Has anyone had any experience (good or bad) with York Nutritional Labs in Hollywood, FL? Offers a food test, but does it work? dvm77@juno.com

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