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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

January Calendar Update: http://www.freewebz.com/schafer/1Cal3fin.htm

________________________________________________________________

Friday, January 24, 2003

>>> LAST DAY TO PROMOTE YOUR AUTISM MEETING, CONFERENCE: JAN 25

for THE AUTISM CALENDAR FEBRUARY UPDATE:

http://www.freewebz.com/schafer/calendar-form.htm

 

EDUCATION

* Fighting for Education: Parents Of Kids With Autism Face Daily Challenge EVENTS

* Genetic Research and Vaccine Safety: NAAR on NPR Friday Noon PST

* WAFF WALK 2003 in Colorado

RESEARCH

* Child Neurology in the 20th Century

PUBLIC HEALTH

* Vaccines Seen a $10 Billion Market by '06

* Parents Weigh Choice Of Risks

CARE

* Poor, Elderly Face Aid Crisis, Kentucky Legislators Told

* Autism Program Possible With NJ State Grant

LETTERS

* More On FC

* Some Aren't That Lucky

* Do the Math: We Can't Afford Autism

 

EDUCATION

Fighting for Education: Parents Of Kids With Autism Face Daily Challenge

[By Lisa M. Sodders for the Daily News, Los Angeles.] http://www.dailynews.com/Stories/0,1413,200~20954~1120955,00.html

Fifth-graders Aaron Bruck and Teddy Landes live just five doors apart on the same winding street. Both have younger sisters they alternately dote on and tease.

And both have autism, the complex developmental disorder that affects verbal and nonverbal communication and social interaction.

The boys' parents have fought to give their sons as many opportunities as they can, but no fight has proven more frustrating than their search for a sound education.

Their struggle, according to the boys' parents and critics of the Los Angeles Unified School District, exemplifies what's broken in a district accused of cutting corners to save money on spiraling special education costs.

"My kid is still a child of taxpayers in the district," said Teddy's father, Stan Landes, an attorney who teaches part-time at California State University, Northridge. "My child is still entitled to a free and appropriate education."

But what constitutes a "free and appropriate education" is, at best, a fuzzy concept in the highly regulated world of special education.

Known by its four-letter acronym, FAPE is guaranteed to children with disabilities under the federal Individuals with Disabilities Education Act.

The law defines it as one that "emphasizes special education and related services designed to meet (disabled children's) unique needs and prepares them for employment and independent living."

For the district, FAPE means assembling a program that will "bring the child to the starting line," said Donnalyn Jaque-Anton, associate superintendent of special education.

"There's a certain misunderstanding to what is FAPE in terms of ceiling and floor," she said. "It's not just what's good, but what's calculated to bring some benefit."

But that can be hard to achieve in LAUSD, where efforts to educate a large number of special needs children are hampered by inadequate federal funding and a dearth of resources, such as speech and language therapists.

Growing numbers Since 1996, the number of special education students has grown by nearly a quarter to about 86,000, or nearly 12 percent of the district's total enrollment.

It also spends 12 percent of its $10 billion budget -- or $1.2 billion -- on special education services. This breaks down to an average of $7,065 annually for general-education students, and $12,976 for special education students.

Because federal funding doesn't cover the full cost of educating students with special needs, district officials say, their reach is limited.

Under the Individuals with Disabilities Education Act passed by Congress in 1975, the federal government was expected to cover 40 percent of the cost of educating students with disabilities and behavioral problems.

Since then, the subsidy granted to schools nationwide has averaged 8 percent a year. But last year, the subsidy amounted to just 6.1 percent for LAUSD, representing a shortfall of more than $400 million.

"Special education is underfunded and the federal level needs to come to the table with what they promised," Jaque-Anton said. "People shouldn't be angry at the local level. We're endeavoring to get our representatives to fully fund what special education should have. It's a long-standing issue that creates resentment and pits general and special education against each other, when we should be working on a unified system."

The district also struggles to provide special education services. The problem is especially acute for qualified speech and language therapists, who are in short supply nationwide.

The district is trying to compensate for the shortage by contracting with nonpublic agencies and using interns from the 14 universities in California who train these therapists.

Parents discouraged While LAUSD officials say they are doing all they can to help special education students, parents say the district routinely denies services to their children to save money, figuring most parents don't have the money to fight the decision in court.

Parents are told, "We don't do that," or "He's not eligible," but when questioned, district officials are reluctant to put anything in writing, said Ruth N. Holzman, a parent of an autistic child who serves on the Chanda Smith Consent Decree committee.

The decree is part of a 1996 settlement of a class action civil rights lawsuit that calls for improved programs and services for the district's special needs students. A committee of parents, educators and community members are responsible for overseeing implementation of the court order.

But even when services are available, obtaining them can be cumbersome and time-consuming.

Recently, the district gave parents a list of vendors specializing in speech, behavior therapy and other specialties that it wants parents to contract with. The Landeses called three speech therapists who had offices nearby.

One never returned the family's phone calls, another had a waiting list that would have delayed Teddy's therapy until the end of this school year, and the third was a recent college graduate who had never worked with an autistic child.

For now, the Landeses are staying with the speech therapist they found on their own three years ago, although the district reimburses less than half of her fee.

"It took six months for Teddy to establish a rapport with the wonderful therapist he has. I don't have another six months to waste," Stan Landes said.

In fact, the family has spent years cobbling together a peripatetic education for Teddy because no single school can provide for all of his needs. Since preschool, Teddy has changed schools four times and attended one school twice.

"There are people who say every neighborhood school has to have it, but the reality is, it's not going to happen," Stan Landes said. "I don't think every neighborhood school can be all things to all people, but you shouldn't have to travel an hour and a half."

Jaque-Anton said the district is allowed to do some "clustering" of students if services aren't available at their home schools, but is working to minimize that so students can stay with their neighborhood peers.

Out-of-pocket costs Like many families with special needs children, the boys' parents supplement special education services out of their own pockets.

At Cantara Street School in Reseda, Teddy gets adaptive physical education, speech therapy and occupational therapy.

After school, he receives behavior therapy in Encino, paid for by the district; additional speech therapy, partially paid for by the district; and music therapy at CSUN and horseback-riding therapy, both of which the Landeses subsidize. On Sundays, Teddy plays Little League baseball on a special needs team in Altadena.

Aaron's parents put him in a private school at their own expense until the district began paying his educational costs when he reached kindergarten. They also paid for a one-on-one aide until kindergarten.

"He wasn't ready for a big, 650-person playground mayhem," said Aaron's mother, Helen Wu, noting that autism makes Aaron extremely sensitive to noise and crowds.

Like many autistic children, Aaron is a bundle of contradictions. Despite problems with fine motor skills, he plays piano. He recently played Rolf, the budding Nazi, in a local theater production of "The Sound of Music."

"He is fascinated by cars and mechanical things and he pretty much has memorized the Consumer Reports 2002 rating for cars and SUVs," Wu said, noting that Aaron informed both his uncle and his aide that the cars they bought weren't the most reliable ones on the market.

But she sees trouble ahead, as Aaron grows older and is asked to achieve more challenging goals.

"As he progresses and goes up the grades, he's having trouble with things that are more abstract, like literature," Wu said. "His strengths are going to be in areas where (concepts are) more concrete."

Despite the problems they encountered, Wu and her husband say they are now satisfied with their son's education. But that could change next year, when he will matriculate to middle school.

"I think his elementary school years are better than I ever could have imagined they would be," Wu said. "I just feel blessed at how far he's come. We put a lot into it, but I just feel blessed."

 

 

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EVEMTS

Genetic Research and Vaccine Safety: NAAR on NPR Friday Noon PST

NAAR will be featured on tomorrow's edition of National Public Radio's Talk of the Nation Science Friday airing Friday, Jan. 24 from 3 - 4 p.m. (EST).

Guests include Dr. Andy Shih, NAAR's director of Research & Programs, Dr. Susan Folstein, of Tufts/New England Medical Center and coordinator of the NAAR-funded Autism Genetics Cooperative, and Dr. Neal Halsey, director of the Institute for Vaccine Safety, Johns Hopkins Bloomberg School of Public Health. (Dr. Halsey is not affiliated with NAAR).

The program is scheduled to focus on the rising prevalence of autism spectrum disorders and the latest research focusing determining the causes of autism.

To determine what station in your community is an NPR affiliate, visit the NPR website at: http://www.npr.org

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WAFF WALK 2003 in Colorado

Boulder, Grand Junction, Durango, Pueblo and Castle Rock, Colo. Sat., April 26, 2003

[This announcement comes from The OARacle, the monthly newsletter of the Organization for Autism Research, "Research and Resources That Help Families Today!"] http://www.autismorg.com

Ninety days and counting! Join more than 1000 runners and walkers in one of five cities to help raise autism awareness in Colorado and funds for local programs, national advocacy, and autism research.

This exciting event has something for runners and walkers of all levels and the post-event celebration features family entertainment of many types at all the venues. Many fundraising opportunities exist for people with the drive to help out this outstanding cause.

In addition to race participants, the WAFF WALK organizers are looking for volunteers to help in Boulder, Grand Junction, Durango, Pueblo and Castle Rock. For more information, visit the WAFF WALK website or contact Tom Schirmer, WAFF WALK Director, (303) 994-4061 or Kim Anderson, WAFF WALK Administrator, at (303) 688-1995.

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RESEARCH

Child Neurology in the 20th Century.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=12538797&dopt=Abstract

Ashwal S, Rust R.

Department of Pediatrics [S.A.], Loma Linda University School of Medicine, Loma Linda, California 92350, U.S.A.

Although considered a relatively new subspecialty, child neurology traces its origins to the Hippocratic descriptions of seizures and other neurologic conditions in children.

Its true beginnings can be traced to the 1600s and 1700s with classical descriptions of chorea, hydrocephalus, spina bifida, and polio.

It was, however, the remarkable clinical and scientific advances in neurology and pediatrics at the end of the 19th century that helped create its scientific foundation.

Like other pediatric disciplines, child neurology evolved into a distinct clinical and scientific specialty early in the 20th century.

Remarkable advances in the neurosciences, particularly in the fields of genetics, molecular biology, metabolism, immunology and nutrition, have greatly advanced our understanding of how the brain develops and responds to environmental influences.

Advances in neuroimaging, electroencephalography, electromyography, muscle histology, biochemistry, and neuropharmacology have considerably improved our ability to evaluate and treat children with neurological disorders.

These advances have allowed new and expanding approaches, unique to children, in the fields of epilepsy, neurodegenerative and neurometabolic disorders, nervous system infections, demyelinating diseases and tumors, neonatal neurological conditions, and neuromuscular diseases.

They have also led to a better understanding of the neurobiologic basis of common problems such as global developmental delay, cerebral palsy, and autism.

As remarkable as the advances have been in the past century, the accelerating pace of our understanding of the fundamental mechanisms responsible for brain development will lead to even greater achievements in the clinical care of children with neurological disorders in the 21st century PMID: 12538797 [PubMed - as supplied by publisher]

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PUBLIC HEALTH

Vaccines Seen a $10 Billion Market by '06

[Thanks to Roxanne & Ed Przybysz] story.news.yahoo.com/news?tmpl=story&u=/nm/20030107/bs_nm/health_vaccines_dc

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Reuters - Sales of vaccines, once considered a commodity market, are booming with global revenues set to reach nearly $10 billion in 2006 from $5.4 billion in 2001, according to research recently published.

Analysts at Merrill Lynch said the fastest growing section of the market would be for flu vaccines, sales of which are expected to more than double to $2 billion in the next five years.

Much of the flu vaccine market's 16 percent compound five-year growth will be driven by the entry of MedImmune Inc.'s premium priced nasal spray FluMist, which will be co-marketed by Wyeth.

The launch of FluMist later this year, coupled with increasing demand for pediatric jabs, could see the overall vaccine market leap by 20 percent in 2003 alone. Growth is then expected to moderate to an annual 10 percent from 2004 to 2006.

Merrill's projection of 13 percent compound five-year sales growth for the total vaccine market compares with global drug sales of just eight percent in the year to October, 2002, according to healthcare information firm IMS Health.

The infant sector currently makes up the largest section of the vaccine market, with 2001 sales of $2.5 billion, but adult demand is growing as governments actively promote flu shots for the elderly and more vaccines are used by tourists.

At the same time, the threat of bioterrorism in the wake of September 11, 2001 attacks on the United States has spawned a new business in supplying vaccines against smallpox following fears that the deadly virus might be used as a weapon.

The global vaccines market is currently dominated by four large pharmaceutical companies -- Aventis SA, GlaxoSmithKline Plc, Wyeth and Merck & Co Inc -- which together account for almost 85 percent of sales.

But a number of smaller companies are also carving out a niche, including Britain's PowderJect Pharmaceuticals Plc and Acambis Plc, Switzerland's Berna Biotech and Chiron Corp of the U.S.

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Parents Weigh Choice Of Risks

Doctors say treatments are safe

[By Valarie Honeycutt Spears for the Herald-Leader.] http://www.kentucky.com/mld/heraldleader/news/local/5001898.htm

Michael Meehan and Thomas Dysarz are so concerned about the risk of a brain disorder from vaccinations for their quadruplets that they are refusing recommended immunizations and have been told to look for a new doctor.

Monica Wainscott, a mother of quintup-lets, can't imagine not immunizing her babies, whose lives seemed so fragile at birth.

The families represent the two sides of a national debate about the safety of vaccines.

Some parents, politicians, and researchers say that the minuscule amounts of mercury in vaccines could be responsible for a range of disorders, including autism.

The issue, raised during the 1990s, has received renewed attention recently from parents and advocates who met earlier this month on Capitol Hill. They asked the nation's leaders and pharmaceutical companies to stop the use of the mercury-containing preservative thimerosal in all vaccines, contending that illness and disability are resulting.

But other researchers and physicians say that the risks are small and that not getting the immunizations could be deadly.

"There is only a minuscule risk. The benefits far outweigh the risks," said Craig Gillispie, an administrator for Pediatric and Adolescent Associates, which dropped the quadruplets as patients because Meehan refused vaccinations.

Meehan is the quadruplets' biological father and Dysarz, his male partner, is helping to raise them since they were born two months prematurely in July.

Wainscott, the Frankfort mother of 13-month-old quintuplets, said she was not aware of the concerns about thimerosal, but thinks it is imperative to get the vaccines.

"The risks are outweighed by what could happen to them if they don't receive the immunizations. They were so sick in the neonatal intensive-care unit. We don't want to go down that road again," she said.

In 2001, the Institute of Medicine recommended that children and pregnant women avoid thimerosal.

According to The National Center for Disease Control, all seven vaccines produced since April 2001 and recommended for use among all children do not have thimerosal or have only trace amounts.

Even as vaccines containing thimerosal are being phased out, CDC officials say they are still safe.

But it's the trace amounts that concern parents. Like lead exposure, there is no "safe" level for mercury, said Sallie Bernard, Director of the group Safe Minds.

The principal ingredient of thimerosal is ethylmercury, a chemical cousin of the methylmercury found in mercury-contaminated fish. For years, ethylmercury was used in multidose vials of vaccines to prevent contamination by bacteria when a syringe needle was injected into the vial repeatedly.

Boyd Haley, chairman of the University of Kentucky Chemistry Department, has testified on Capitol Hill and his concerns about thimer-osal have been published in medical journals.

"Thimerosal is a severely neurotoxic compound," Haley said. "If it was my child or my grandchild, I would not give them the vaccinations. It's not worth the risk."

Meehan said he is not ruling out every immunization, just those that contain thimerosal. Meehan and Dysarz are most concerned about the shots for diphtheria, tetanus and pertussis and hepatitis B.

They agreed, however, to have the babies immunized against RSV, a lung ailment. That vaccine does not contain thimerosal.

Meehan and Dysarz gained international attention when a Nicholas-ville woman gave birth to Meehan's biological quadruplets through in-vitro fertilization, a situation that has drawn extremes of criticism and support.

The men say the immunization issue and their disagreement with their doctors has nothing to do with the fact that they are the gay parents of quadruplets.

"This is an issue for everyone," Dysarz said.

Gillispie declined to discuss the quadruplets' case specifically, but

said: "If patients do not follow the physician's prescribed treatment protocol, we don't keep them as patients."

Lexington pediatrician Thomas Pauly, who cares for the Wainscott quintuplets, said he wouldn't treat the quadruplets if Meehan and Dysarz didn't agree to recommended immunizations. "My job is to prevent disease and I would not be doing my job. It's a mistake not to immunize," he said.

A study released in November by researchers from the University of Rochester Medical Center bolstered the argument that the vaccines are safe.

But Haley and others worried about thimerosal point to another study released in October by researchers at University of California-Davis, which concluded that the nearly threefold surge in California's autism rate, which now stands at 4 to 5 per 10,000 people, could not be explained by shifting definitions, misclassification or migration.

Maquel Sarantakos, 32, a school librarian from Jessamine County, had some reservations, but her decision to get vaccinations for her daughter, Genaea, 4, was guided by experience and advice from her pediatrician.

A key event was when a pregnant colleague feared she had been exposed to rubella, also known as German measles. Such exposure can cause serious birth defects, including blindness and heart abnormalities. It influenced Sarantakos to make sure her own immunizations were up to date before she got pregnant.

She realized the risk, though rare, was real.

"Measles still do happen," she said. "I don't want to take the chance. I wouldn't want my daughter to have that exposure."

"We would worry with each shot," said Michelle Hintz, 33, a Lexington mother of three. "But we felt we had to do it." She and her husband debated the benefits and drawbacks of vaccines for their first two children, now 6 and 3, and decided to have them immunized.

Their third child, now 1, was born at home. A growing interest in alternative health increased their doubts about immunizations, so they've delayed many of his shots.

"It's getting by on everyone else taking a risk," she said. "But there's no easy answer. We're kind of in limbo about what to do."

The concept is known as "herd immunity." Even those who are not immunized are somewhat protected because the vast majority of the population is not able to spread a disease. But as the unvaccinated population grows, so does the risk.

Ultimately, Hintz expects to get her youngest immunized. "We're going to be pushed, because of the risks, and because those diseases are out there. We're probably going to pick and choose which ones."

Kentucky children must be immunized before attending school, but Debbie Rickerd, a registered nurse and team leader of the immunization clinic at the Lexington-Fayette County Health Department, said parents who don't immunize for medical or religious reasons can sign a waiver.

"The chances of having a reaction is slim, much smaller than coming into contact with a disease that could be deadly," Rickerd said.

Meanwhile, Meehan and Dysarz say they will look for a pediatrician. Until then, the quadruplets can receive emergency medical care at area hospitals. Meehan is confident he can find a Lexington pediatrician who will work with them, because other parents with similar concerns across the country have been successful.

Gillispie, the administrator at Pediatric and Adolescent Associates, said it's not unusual for parents whose children are treated at their practice to be concerned about the immunizations.

"But it is unusual for them to be extremely adamant," Gillispie said.

The national debate over vaccinating children is playing out in Bluegrass doctors' offices, too.

Herald-Leader staff writer Barbara Isaacs contributed to this article.

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SAR Autism Resource

News Archive – Autism Database - No cost.

http://groups.yahoo.com/group/-AuTeach/messages

 

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CARE

Poor, Elderly Face Aid Crisis, Kentucky Legislators Told

State agencies plead for way to avoid cuts, which includes services for autism

[Similar scenarios are taking place in states across the country facing budget shortages of revenue, and overspending. By Deborah Yetter in The Courier-Journal.] http://www.courier-journal.com/localnews/2003/01/23/ke012303s354320.htm

Frankfort -- Psychiatric services would be slashed, hospitals could close, domestic abuse could rise and many of the state's poorest and neediest people could be forced into homeless shelters, jails and emergency rooms.

That's the scenario top human services officials outlined yesterday to lawmakers at an all-day hearing as they plan for proposed budget cuts of up to 9.1 percent. Gov. Paul Patton has ordered cabinet heads to plan for such cuts for the fiscal year that begins July 1 to resolve the state's budget crisis.

An overflow crowd of people representing the elderly, disabled and disadvantaged packed the hearing room to plead with lawmakers to find some way to avoid the cuts officials say are inevitable without additional revenue.

"Where will you get the money for the crisis this is going to create?" demanded an angry Kim Keller of Louisville, who said her disabled son stands to lose services under the cuts.

"What am I going to do?" asked a weeping Maureen Schell of Taylorsville, who said her autistic son "will slide back into the abyss" if he loses therapy covered by Medicaid.

Parents of disabled children, former welfare mothers, officials with residential centers for abused and severely disturbed children, officials who collect child support, advocates for the elderly and 55 members of the Kentucky Domestic Violence Association were among those who attended.

Lawmakers were clearly shaken by the magnitude of cuts outlined yesterday by Health Services Secretary Marcia Morgan and Families and Children Secretary Viola Miller -- and by the pleas for help from those who would be affected. Rep. Jimmie Lee, D-Elizabethtown, the chairman of the human services subcommittee of the House budget committee, urged those at the hearing to keep demanding answers from lawmakers about how the state will handle the anticipated crisis in human services.

"That's exactly the question you need to ask your legislator," he said. "That's the question you need to ask all of us. Those questions are going to come back to haunt us."

+ Article continues:

http://www.courier-journal.com/localnews/2003/01/23/ke012303s354320.htm

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Autism Program Possible With NJ State Grant

[By Denise Jewell.] http://www.nj.com/news/gloucester/local/index.ssf?/base/news-2/1043234606553

60.xml

New Jersey's Department of Community Affairs announced Tuesday that it was doling out $40,000 worth of grants to support recreation programs in Gloucester County.

The four grants --which range from $3,000 to $12,500 -- are part of a statewide initiative to support recreation programs that offer a variety of activities to residents.

Gloucester County's Parks and Recreation Department will use a $12,000 grant to help fund a summer program for children with Asperger syndrome, a form of a autism.

Leone Mather -- the supervisor for the department's Therapeutic Recreation division, which provides programs for individuals with disabilities -- said the four-week program serves about 30 children between the ages of 6 and 21.

The program started 18 years ago as a camp for children with developmental disabilities who are now served by other programs, Mather said. As an increasing number of children were diagnosed with Asperger syndrome, Mather said, the program was changed to focus on their needs.

The grant will help pay staff salaries and transportation costs of the program, which brings the children on weekly trips into the community.

"We want them to have fun and we want them to learn to relate to their peers in an appropriate manner," Mather said.

 

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* * *

LETTERS

More On FC

As Janet Norman-Bain says, there are obvious similarities between Dov and Tito's experiences and those of FC users. Tito's book 'Beyond the Silence' tells of the intensive work of his mother during his childhood and this is the same the behavioural and language support received by many facilitated typists.

My daughter has been typing since 1987, first with physical support, then light touch and now with behavioural support only.

Her book 'Lucy's Story: Autism and Other Adventures' (Lucy Blackman, Publ. US/UK Jessica Kingsley, available through www.amazon.com , Publ. Australia www.bookinhand.com.au ) describes her autism in detail.

She undertook this as an explanation of why facilitation is effective and also why the language she uses does not perform exactly the same function as that of neurotypical writers and communicators.

Her insights into early childhood have been welcomed by many parents and professionals as a tool for understanding young children with autism.

'Lucy's Story' also contains a detailed description of the first few weeks after auditory integration training as an adult.

And no, of course facilitated communication and approaches such as those taken by Tito's mother are not a cure or even a treatment.

They don't make living with autism easier, but effective and well monitored FC over a period of time sure makes it different, and a whole lot better for everyone.

Mary Jane Blackman blackman@eis.net.au

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Some Aren't That Lucky

I am glad that the boy in "Breaking the Silence" is doing so well; did things earlier than other autistics, etc.

Some of us aren't that lucky. Our son is 10, has never had speech, has severe sensory problems, self-abuse, obsessive/compulsive disorder and is now having to be re-potty trained. We have tried hundreds of things to help him and we have not found the "missing link" yet.

So, reports such as the one on 60 minutes, may be the one thing that helps.

Why should we pass up anything up? No FC is not new, but some of her technique is way different than what is being used in schools today.

So please don't put down what might work for someone else. I believe people do "suffer" from autism. I have watched my son do it for years.

I know he is not happy trapped inside himself and it is frustrating to watch him each day, especially on the "bad" days.

- B.Hogard

* *

I noticed two letters in the Schafer Autism Report Thursday, Jan. 23. 2003, (from mothers Tashia Berman and Laurie Mirda) questioning the focus on vaccines as sole cause of autism.

I too am a mother, and believe the focus of research should be: (1) What brain circuits are compromised in autism? (2) What mechanisms selectively impair these circuits?

My own son was stillborn and brought back to life. The findings of William Windle (Scientific American, Oct 1969) on damage caused by asphyxia at birth seem most relevant to me. Windle and co-workers found selective bilateral damage of the inferior colliculus in the midbrain auditory system of monkeys subjected to asphyxia.

My son, Conrad, had clear hypersensitivity to sounds like the unexpected ring of a telephone, covering his ears every time he went into a room with a phone. On the other hand he only learned to speak after being taught deaf sign language.

Conrad had no delays in motor development, except that he never crawled on his hands and knees - only scooted around on his belly, which was reminiscent of what Windle and co-workers observed in asphyxiated monkeys.

Windle and co-workers also found that circulating bilirubin only entered the brain regions already compromised by asphyxia. Mercury also affects the auditory system (see Oyanagi et al. The auditory system in methyl mercurial intoxication: a neuropathological investigation on 14 autopsy cases in Niigata, Japan. Acta Neuropathologica, Berlin, 1989, 77:561).

I have more on my website, http://conradsimon.org/. I hope to add some updates soon. I have become interested in the practice of immediate clamping of the umbilical cord at birth. This has to be dangerous if it is done before the baby is breathing on his own - Windle and co-workers prevented newborn monkeys from breathing, and then clamped the cord. I think parents of children with autism should be questioning the practice of immediate cord-clamping as vigorously as vaccinations (see

http://www.cordclamping.com/)

- Eileen Nicole Simon -- Conrad Simon Memorial Research Initiative To

promote interdisciplinary insights on autism spectrum disorders.

http://conradsimon.org/

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Do the Math

In Yesterdays Boston Globe there was an article about an assisted living programme in MA for adults with mental retardation. It cited as an example a 55 year old man diagnosed with cerebral palsy (but able to walk) who enjoyed sheltered employment, spoke in short sentences was somewhat independent but needed keeping an eye on. This scenario could be translated to the fate of the 3577 children diagnosed with level 1 autism in California last year (but many of them could require considerably more care as adults) The cost of this man's assisted living was $60,000 per annum. Translated into California's 2002 figures this would equate to $214,620,000 (at today's

prices) per year for last years cohort when they reach adulthood. It works out at about $6.4 billion over a 30-year adult lifespan. This represents ONE year's worth of diagnosis in ONE state.

It seems too fantastic to be credible, but do the math yourself.

- Heather

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READERS' POSTS

I have a 15 year old son. He has been denied SSI because of my income. Does anyone know who I can go to for advice? blairk@eustis.army.mil

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The popular book Visual Strategies for Improving Communication by Linda Hodgdon is now available in Spanish. http://www.UseVisualStrategies.com

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My 3 year-old son has an undiagnosed syndrome, and falls within autistic spectrum. He was exposed to the drug purinethol (6-mercaptopurine) during gestation, which is used for Crohn's disease as well as other ailments. Anyone have any personal knowledge of other children exposed to this? RtepperMD@aol.com

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Parent Practitioner incorporates nutrition, behavioral and sensory intervention in assisting caregivers manage autism. Uses saliva testing to customize lipodermal plant- based crème for natural liver cleansing and absorption of vitamins minerals, amino acids etc, via skin to blood, while concentrating on healing the faulty gut. Free educational tools upon request. Non chemical heavy metal detoxification available. mbmrja@msn.com International consultations.

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I'm looking for anyone who has had experience with Zoloft. I am interested in knowing what if any side effects occurred, how long it took to see positive results, how much was given and what time of day. Joanna cjhahn@bluemarble.net

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I'm a mom with two autistic kids in Pittsburgh -- I have a great website (free of charge -- no advertising accepted) for parents of kids with autism to help them find services in the Pittsburgh area. I also have an online support group. Everything is free of charge. I didn't have anything like it when my son was diagnosed. Cindy Waeltermann www.autismlink.com

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Does anyone know of a floor-time therapist in the Sacramento (CA) region? My seven year old has had 3 years of ABA, and while he's made great strides forward, he has not made the progress we were hoping for. DeAnna, torresd53@aol.com

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"Remedial Therapy And The Autism Spectrum Disorder - Balancing Body, Mind and Soul." Here's an important booklet for parents, physicians and educators who are involved with Autism, Asperger's, ADHD or other neurological disorders. Written by the President/CEO of Children's Resource Center in Scottsdale, AZ, you'll discover how the various arts affect the soul of a child, thereby initiating changes. Remedial Therapy is a highly specialized form of therapy. Web site: http://www.childrensresources.com/booklet.html.

Contact: info@childrensresources.com

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I could use a five minute consult with anyone who knows Perl script, egrep, or Brief syntax, for a good cause – this newsletter. email Lenny, editor and lead programmer. schafer@sprynet.com. The weird stuff autism makes you have to learn sometimes. sheesh!

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FOR MORE READERS' POSTS: http://www.freewebz.com/schafer/readpostarch.htm

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>> FREE (Almost) READERS' POSTS <<

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but posters are obligated to thank all those who take

the time to answer your ads. This is a consideration

for others with autism after you and yours, who seek

assistance from appreciated readers. Send submissions to:

READERS' POSTS: http://www.freewebz.com/schafer/postsc.htm

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