SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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________________________________________________________________

December 16, 2002

TREATMENT

* Attention-Deficit Children Benefit From 'Brain Wave' Training

* Diagnosis: ADHD Not Airhead Girls

* Treatment of Late Onset Autism As A Consequence Of Probable Autoimmune Processes Related to chronic bacterial infection

CARE

* The Caring Kids Who Give Up Their Childhood

* Drug Firms And Doctors: The Offers Pour In

EDUCATION

* My Disabled Son Deserves A Diploma

* Aspergers Student Earns 2 Degrees From A&M-CC at Age 18

* Autistic 13-year-old Finishes First at Swim Meet

LETTERS

* Illustrating Autism

* These Researchers Seem Never Finnish-ed

* For the Fragile X File

* Dear Mr. President

TREATMENT

Attention-Deficit Children Benefit From 'Brain Wave' Training Biofeedback was also the only treatment that significantly reduced the amount of slow brain waves in the children.

A year's worth of counseling and medication relieved some symptoms of attention-deficit hyperactivity disorder among a group children, but only children receiving additional biofeedback therapy managed to hold on to these healthy gains after going off the medication, according to a new study. Half of the 100 children in the study received EEG biofeedback therapy, a treatment in which individuals are taught to retrain electrical activity in their brains. The biofeedback group also experienced significant changes in these "brain wave" patterns associated with attention-deficit disorder, according to Vincent J. Monastra, Ph.D., of the FPI Attention Disorders Clinic and colleagues.

"While ADHD is diagnosed on the basis of behavioral symptoms, our findings suggest that the disorder also involves neurophysiological factors," says Monastra and colleagues.

The study results are published in the December issue of Applied Psychophysiology and Biofeedback.

Most studies suggest that drugs like Ritalin, the medication used in this study, do a good job of relieving ADHD symptoms. But up to 45 percent of patients diagnosed with certain forms of the disorder do not respond to medication, and some researchers have raised concerns about the long-term use of Ritalin, especially in children. Alternative behavioral therapies like EEG biofeedback are receiving increased attention as a result.

Monastra and colleagues followed 100 children between 6 and 19 years old through a year of ADHD treatment that included special parenting classes, school consultation and Ritalin. The researchers evaluated the severity of each child's ADHD symptoms using a computerized attention test and survey of their behavior before and after the year's therapy.

Fifty-one of the children also received weekly EEG biofeedback treatments. The treatment uses a device called an electroencephalograph to measure the types of electrical activity, or brain waves, produced in certain areas of the brain.

According to a few previous studies, therapies that reduce the amount of "slow," or low-frequency, brainwaves and boost the number of "fast," or high-frequency, brain waves can relieve some symptoms of ADHD. The children in the study were rewarded for their efforts to change their slower brain waves to faster ones after seeing how certain behaviors affected their brain wave patterns.

The year's worth of Ritalin treatments improved attention deficit and impulse control in most children, independently of the effects of parental counseling and the biofeedback therapy. But without the medicine, the symptoms of attention deficit quickly returned in among all children except for those who had participated in the biofeedback therapy. Biofeedback was also the only treatment that significantly reduced the amount of slow brain waves in the children.

Parental counseling appeared to ease ADHD symptoms at home, but not at school, Monastra and colleagues concluded.

"Systematic school intervention, typically through 'individual education plans' were necessary in order to reduce the adverse effects of ADHD in the classroom," says Monastra.

Further research is necessary to find out whether EEG biofeedback is an effective long-term treatment for ADHD and to discover how Ritalin and biofeedback work together, the researchers say.

Attention-deficit-hyperactivity disorder affects between 3 percent and 5 percent of school-aged children. Along with the main symptoms of hyperactivity and inattention, individuals with ADHD frequently suffer from anxiety and depression and may have learning disorders.

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Diagnosis: ADHD Not Airhead Girls

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CBS - According to the National Institute Of Mental Health, attention deficit hyperactivity disorder (ADHD) affects about 3 to 5 percent of all American children. While the great majority of those diagnosed are boys, experts now believe ADHD may be just as prevalent in girls.

The main reason girls are undiagnosed is that the disorder often exhibits itself differently in them, says Dr. Kathleen Nadeau, a child psychologist and author of "Understanding Girls With AD/HD." Friday, she visits The Early Show to offer tips on spotting the disorder in girls.

Boys with ADHD tend to be more disruptive and act out physically, while girls tend to be less rebellious and are written off as airheads. That said, there are still some girls who act out like boys do. No matter what their sex, though, nearly all children with ADHD don't perform as well in school and have short attention spans.

Another big difference between boys and girls with ADHD is that in boys, the symptoms tend to subside a bit once they hit puberty. However, due to hormonal changes, the symptoms often increase in girls.

Treating girls with ADHD can be more difficult than it is with boys. Ritalin and similar stimulants, which are widely prescribed, can worsen the ADHD symptoms in some girls and cause anxiety.

Failure to diagnosis the disorder in young girls can have serious long-term consequences. Girls with ADHD may compensate for their poor grades by becoming "social butterflies" and engaging in risky behavior such as drugs and sex.

Here are three different personality types for girls with ADHD, Dr. Nadeau identified:

"Tom Boy" The "tom boy" type of girl with ADHD most closely resembles your typical boy with ADHD. They are more physically active and are drawn to risk-taking activities such as climbing a tree. They also tend to be more assertive and aggressive.

"Day Dreamer" The "Day Dreamer" type is the most likely to be overlooked because she is often shy, sweet and passive. She may also exhibit anxiety and have trouble getting her schoolwork done.

"Chatty Cathy" A "Chatty Cathy" girl with ADHD has symptoms that are both hyperactive and inattentive. While they have a higher activity level than the "Day Dreamers" they aren't "Tomboys." These girls tend to be very silly and when speaking may jump from topic to topic.

© MMII, CBS Worldwide Inc. All Rights Reserved.

* * *

Treatment of Late Onset Autism As A Consequence Of Probable Autommune Processes Related to chronic bacterial infection

ds=12478882&dopt=Abstract <- - address ends here.

Matarazzo EB.

Department of Psychiatry, School of Medicine, University of Sao Paulo, Brazil. eneidam_br@yahoo.com.br

Two cases are described of children who at first developed normally, but before the age of three developed autistic symptoms following the reactivation of a chronic oto-rhinolaryngologic infection. The clinical and laboratory data of the cases support the aetiological hypothesis of an autoimmune process. Adrenocorticotrophic hormone (ACTH), prescribed in the first months of the disease, cured one case.

The other patient, who was two years old when autistic symptoms appeared and was treated only six years later, showed a partial but definitive improvement with the immunosuppressive treatment.

This report proposes that reactivation of a chronic bacterial infection be included among the aetiologies of Late Onset Autism, and demonstrates that, when the aetiological hypothesis of an autoimmune process based on clinical and laboratory data is considered, an immunosuppressive treatment, particularly with ACTH, can be very effective and also safe.

PMID: 12478882 [PubMed - in process]

* * *

CARE

The Caring Kids Who Give Up Their Childhood

Autism is a family disability

Laura Baxter helps look after a woman with epilepsy, a man who has difficulty walking and a 15-year-old boy with autism.

What is even more remarkable is that Laura is 13 and the woman is her mother, the man her father and the boy her brother.

Laura is one of an estimated 6,500 young people in Scotland who have a caring responsibility for a family member.

She enjoys her role, her parents, Linda and Vic, are well enough to work and look after their children most of the time, and she says it has not affected her school work or friendships.

But other young carers are not so well off. According to new Scottish research, a third of them have harmed themselves and 36% have considered suicide.

They range from seven-year-olds who do the shopping to teenagers who fulfil ‘adult’ roles, including managing the household finances and cooking meals.

Many are unable to take part in the out-of-school activities their friends enjoy because they have to be at home, caring for someone else.

Others are bullied, either because they are isolated from their peers or because a sick or disabled parent is an easy object of ridicule.

Many also fall behind at school because they are too tired or too distracted to complete homework properly.

Researchers at Edinburgh University who looked at the mental health needs of 61 young people attending a Young Carers Project in the city this year found 60% reported difficulty in sleeping and 30% in eating, while 34% had harmed themselves and 36% had thought of suicide.

A third also said they had been looking after a family member for "as long as I can remember".

Jan Wells, manager of the Aberdeen Carers Centre, said: "They are very much the hidden carers and still often disregarded by professionals. Parents can also be frightened that if someone finds out a child is undertaking tasks which are perhaps not appropriate for their age, they could be taken into care, which is an unfounded fear unless there are other issues involved."

Chris Dearden, a research fellow at Loughborough University’s Centre for Children and Family Research, said: "Young carers can be doing pretty much everything in terms of running a home, as well as providing personal care to whoever is ill. Some are learning how to deal with incontinence and give injections and tube feeds, or coping with a parent who overdoses or self-harms."

She said the centre’s recent research had also shown young carers have a difficult transition to adulthood. Many leave school with either low-grade or no qualifications. They had a number of skills employers would be grateful for, such as time management and balancing tasks, but that was not recognised.

She said professionals needed to be more alert to potential problems.

"They often fail to spot young carers, who may be under-achieving or be missing school because of their responsibilities.

"There also needs to be more joint working between adult services and children’s services. An example might be making sure a care attendant who visits to look after a sick parent comes an hour earlier, so a child can get to school on time."

While other children might be texting their friends, Laura is often coping at home.

Laura, from Aberdeen, said: "I help my brother sometimes with his homework, and sometimes he has bad tantrums and I try to calm him down.

"If my mum has a seizure my dad’s not usually at home because he’s away on business, so I look after her. I get rosemary oil and put it under her nose and she stops shaking - then we get a duvet to keep her warm.

"Dad has to wear a caliper on his leg because he had polio when he was young. I carry books for him up the stairs and if he gets a new caliper he has trouble getting it off so I have to help him remove it."

Laura says she has no problem with her caring role and has time to see her friends and take part in outside activities.

Linda Baxter, 47, a psychiatrist, said Laura was also doing well at school. But she admits there have been difficulties, such as Laura’s reluctance to bring friends home to a misbehaving brother.

One important support for Laura is the Aberdeen Young Carers Project, where she attends a homework club. Funded by the local authority, the regional health board and the Princess Royal Trust for Carers, it is managed by Voluntary Service Aberdeen. Two staff help carers aged from five to 18 with advice and counselling, run a drop-in centre, lay on fun and games and give first-aid training.

The project is one of a number which have begun to spring up across Scotland now the needs of young carers have begun to be recognised. Experts say it is vital charities and public sector bodies which support such schemes are able to compete adequately for funding.

* * *

Drug Firms And Doctors: The Offers Pour In

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During the past six months, Dr. Eugene Fierman and his two colleagues were showered with offers worth thousands of dollars.

At least once a week, the nation's pharmaceutical firms invited them for "educational evenings" at some of the city's priciest restaurants, including cocktails and dinner at Radius paid for by Pfizer, an insomnia discussion at Locke-Ober, and a depression talk at Maison Robert - both on Wyeth's tab.

Drug firms through intermediary companies paid for at least 50 hours of free continuing medical education courses, which the psychiatrists could complete by phone, mail, on the Internet, or at hotels - required courses for doctors that traditionally were the province of medical schools but now are increasingly funded by the industry.

Some pharmaceutical companies wanted to hire them as temporary advisers, including Forest Pharmaceuticals, which promised the doctors $500 each for listening to a Saturday morning talk about the firm's new antidepressant, Lexapro, at a Cambridge hotel and then providing "advice and feedback."

And occasionally, drug company employees dropped off at the doctors' rented office at Faulkner Hospital small gifts: a box of cookies from the Wyeth salesman, four classical CDs from the Pfizer representative.

With investigations into the industry's sales tactics growing, and a new voluntary code of conduct in place that stresses educating rather than entertaining doctors, Fierman, Dr. Ann Potter, and Dr. Gregory Harris - like many of their colleagues throughout the medical profession - said sales representatives now rarely offer the most lavish gifts that were routine in past years: theater tickets, golf trips, and resort weekends.

Instead, drug makers are paying for or offering more consulting opportunities, even for one evening, continuing medical education courses, and dinners billed as educational events with specialist speakers. At the Globe's request, the three doctors kept track of pharmaceutical-related invitations and offers they received over a five-month period. The material was enough to overflow a 1-foot-square, 2-foot-high box.

"It's hard to resist all this money and free stuff floating around," said Harris. "But it's a slippery slope, and I don't want to be in the position of doing something that crosses the line." The shift in the tactics drug companies are using to establish close relationships with doctors was occurring even before the industry adopted the new guidelines in July. The amount of money pharmaceutical firms spent on meetings and events, including continuing medical education, teleconferences, dinners, symposia, and get-togethers with physician advisers, more than doubled over four years to $2.1 billion in 2001, according to Verispan, a company that tracks promotional spending.

Drug industry funding of continuing medical education courses alone last year totaled $540 million, and the national organization that accredits continuing medical education providers has become so concerned about potential bias that it plans to issue stricter rules as early as January.

+ Article continues:

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* * *

EDUCATION

My Disabled Son Deserves A Diploma

ploma+.shtml

Must high standards necessarily be about winners and losers? Or can we think instead of high standards as what we aim for in public education but which looks different in each child? A diploma that means something could be, conceivably, a document that conveys specific information about the individual graduate: information that a potential employer or college would find very useful. If we were to allow towns control over graduation,the flexibility to decide how to use tools such as the MCAS, we might then have diplomas of value.

My two sons' experiences can provide insight into how this would work. My fifth-grader is what most teachers would call bright, perhaps even gifted in some areas. He is conversant in various subjects and stays on top of his work. This child, as expected, tests well. He scored "advanced" in the fourth-grade MCAS. He has mastered the standards set before him. If our town stamped "passed both English and Math MCAS" on his diploma, this may prove to be helpful information to a potential employer or college admissions board as to this son's abilities, the way the SAT might help. In that case, there is no reason not to use this information. But performance on MCAS should be used only where it will help. Other indicators can be used for different circumstances.

My seventh-grader, on the other hand, has autism, and his neurological sensitivities and reduced language create such discomfort and confusion for him that he frequently exhibits maladaptive behaviors. This son, who attends a state-overseen private special education school, has an Individualized Education Plan, or IEP, rather than following a generalized curriculum. But the IEP uses the state curriculum as its basis. My son's IEP is a 30-page document with goals not only in state-mandated subjects such as English, social studies, science, and math (at his level), but also in behavior strategies. All goals are measured by his teachers each quarter, and a highly detailed progress report goes home quarterly. Once achieved, the goals will help make my son appear and function more like a typical person, so that he will eventually be able to hold a job.

The standards his school holds him to are every bit as exacting and scrupulous as those of my other son. Thanks to Education Reform, both boys' schools incorporate the Massachusetts Curriculum Frameworks, set out a complex set of goals and evaluate them carefully. Both schools demonstrate a high sense of accountability, and high standards. Both schools are training my sons for what lies beyond school. Yet only one boy will receive a diploma at the end of it. At best, if the state has its way, my autistic son will receive a certificate that merely tells an employer that this child is limited in what he can do.

My autistic child is limited in some ways, but he has also learned many valuable skills that will eventually make him a good worker. This society would benefit more from his employment than his institutionalization. Kids like him would have a better shot at getting a job worthy of him if they felt that their diploma was not substandard like the certificate.

Furthermore, if the diploma could indicate my son's drive and progress, the self-control he has learned by mastering his behavioral goal, for example, that skill set may be of more value to a potential employer than the fact that he could not perform 10th-grade mathematics. Tremendous improvement like that is invisible on the current MCAS-driven diploma, and would only be viewed as a failure by board policy.

If we are looking for ways to make children more marketable in this demanding economy, then we must allow them to earn real diplomas, provided they have been given by accountable schools like my sons'. Only then will we have a comprehensive and just system of public school education worthy of our children.

© Copyright 2002 Globe Newspaper Company.

*

Aspergers Student Earns 2 Degrees From A&M-CC at Age 18

l

When Paul Drees was six months old, his mother handed him a shape-sorting ball. He turned it over and over in his hands and in seconds had put all of the correct shapes into place. Catherine Drees said she knew then that Paul was different.

What she did not realize then was that her son's early brilliance would translate into his graduating from college at age 18.

Paul was among 500 who earned degrees from Texas A&M University-Corpus Christi on Saturday. He graduated with a double major in mathematics and computer science, a minor in physics and a 3.5 grade point average. He said his studies came easy, but a rare neurological disorder presented him with some challenges.

"I don't meet many people I have a lot in common with," Paul said, and shrugged like it didn't matter much.

He does have a group of friends that he talks to online. They have never met face to face, but he is unconcerned. "Online, my friends are different, like me," he said.

When Paul was younger he often had problems socializing. He did not talk until he was 3 and did not have much to do with anybody but his family, which includes his father, Alexander, and his sister, Leila. Though he met with the school district's speech therapist regularly, he would not look people in the eye. By the seventh grade, his mother said she and people with the school district thought he had a severe case of Attention Deficit Hyperactivity Disorder.

After dragging him to doctor after doctor, the family finally got a diagnosis - Asperger's Syndrome. The syndrome, which is often compared to autism, is characterized by severe and sustained impairment in social interaction, development of restricted and repetitive patterns of behavior, interests, and activities. These characteristics result in significant impairment in social, occupational or other important areas of functioning.

In contrast to autism, there are no problems with cognition or self-help skills or in adaptive behavior, other than social interaction. Another difference is, Asperger's Syndrome can come with a genius component. Paul's did.

Lightbulb moment Once the diagnosis came in, it became easier to understand what makes Paul tick, said Catherine Drees, who compares her son to an "absent minded professor." Paul is tall and gangly with dark, tousled curls and bright green eyes. When he smiles, it almost lights up the room. But when he is focussed on something, it is his whole world. If he is reading an interesting book, he forgets to eat. Though homework is a breeze, remembering to turn it in is not.

People with Asperger's Syndrome tend to have a circumscribed area of interest that usually leaves no space for more age appropriate, common interests. Paul said for him, that area of interest is computers.

When he talks about computers there is excitement in his voice.

"I like the way I can tell a computer what to do and that it pretty much does it," he said.

Paul breezed through Baker Middle School and went on to Ray High School, where he graduated at age 15. Then it was on to A&M-Corpus Christi. He said that came pretty easy too. Making friends has been rough, though. He was teased mercilessly in grade school for being different.

After one particularly bad day, he came home to cry on his mother's shoulder. She asked him if he would rather be "normal" if it meant he would be popular, or to be himself, which is obviously special.

"It's kind of like being diagonally parked in a parallel universe, but I would still rather be me," he said.

High school better By the time he got to high school, things got a little easier because he could help the slower students with their homework. He was also involved in UIL competitions with peers who could sometimes match his intellect.

"Pretty much everyone liked me," he said. "I was not after their girlfriends. I was studying and taking tests. The only reason they might have had to not like me was that I blew the curves for tests."

He admits that when he is older, he wants to meet princess charming and settle down.

"Someday, if it happens, I want her to be smart and funny," he said. "I really don't care much about looks."

Paul knows that finding the right girl might be tough, because he thinks and acts a little differently. In the meantime, he plans to start back to school in January and pick up dual master's degrees in mathematics and computer science. After that he wants to work for an organization like NASA.

Catherine Drees has all the confidence in the world in Paul's abilities. She said brains like Paul's mean that he will make a good living. He will be able to hire a secretary and a maid to take care of day-to-day life, while he takes on the world.

Contact Jaime Powell by email at powellj@caller.com

* * *

Autistic 13-year-old Finishes First at Swim Meet

Parents at meet praise swim program

When Matthew Wechter of Geneva competed in the 25-yard backstroke, his legs kicked as fast as propellers on a motorboat.

The 13-year-old finished first by a landslide in the second heat of the youth division event at the Fox Valley Special Recreation Association's 23rd annual swim meet Saturday.

Eleven special recreation association teams, from Evanston to Crystal Lake, met at the Norris Recreation Center in St. Charles.

Afterward Matthew's mother, Connie, ran up to him with several congratulations and hugs.

She said the swimming program at the special recreation association has been wonderful for her son, who won the gold at the state swimming meet in Bloomington this past year.

"It's made him more independent and has given him self-worth," she said.

The program has even helped her son, who was born with autism, become less timid and more verbal.

Sue Lange, who is the Norris aquatics director, has coached the Fox Valley Special Recreation Association's Pioneers Team for four years.

She also has run the annual swim meet for 10 years and worked at the Norris Center for 25 years. Saturday, she kept busy making sure the swimmers were lined up and ready to compete.

Before this year, the Fox Valley Special Recreation Association team had not traveled to other meets except for the state qualifier, Lange said. But the team recently competed in Downers Grove and will travel to West Chicago in February.

Lange said the special-needs swimmers are just like anyone else.

"I don't treat them any differently - let's get the best stroke we can get with what we've got," she said.

* * *

LETTERS

Illustrating Autism

To the Wall Street Journal

Funny thing about cartoons. In just two dimensions, you can draw the world any way you want. Here's a different cartoon, one that you might also have written. "Courageous Republican Congressman takes on incompetent bureaucrats in the CDC. The reckless expansion of federal programs and regulations affecting American families may have contributed to the explosion in autism and Dan Burton wants to get to the bottom of it."

As much as I admire Burton's leadership on this issue, this cartoon doesn't do him justice. He has led the Congressional investigation into thimerosal not because he is a conservative but because he is the caring grandfather of an autistic child. And he sees the facts that other parents and grandparents see. The rate of autism has exploded in a decade. No one knows why. The rapid expansion of infant vaccine doses in the same period brought with it an unintended, but similarly rapid increase in mercury exposure through the vaccine preservative thimerosal. Did this cause the increase in autism? So far, it's the best hypothesis on the table, one the Institute of Medicine declared "biologically plausible." Meanwhile, the IOM--not trial lawyers--recommended a comprehensive research program to investigate the hypothesis. The University of Rochester research you declared definitive was actually part of the IOM review, and even the CDC acknowledged that "this was not a definitive study. The small cohort size was only to demonstrate what to look for in animal studies."

Confusing the thimerosal question with Homeland Security will only damage public confidence in the integrity of government when we need it most. Thimerosal is not a liberal vs. conservative issue, it is a families issue. We need more research, more science, more facts (and yes, maybe even some discovery), cooler heads and, please, no more cartoons.

- Sincerely Mark F. Blaxill Cambridge, MA Board of Directors, SafeMinds

*

These Researchers Seem Never Finish-ed

RE Neurologic Disorders After Measles-Mumps-Rubella Vaccination Annamari Mäkelä, MD, J. Pekka Nuorti, MD and Heikki Peltola, MD

My first reaction when I saw the above title in your newsletter was “Oh God! Not again!” I then read the abstract and all I could think of was “déjà vu”. It would be nice to know how many of your readers also wondered, “Did I see this before?” All these studies from Finland are just so much alike and so predictable.

Once more, let us all remember that

1. The original Peltola study, from which all these mini studies are sprouting, was over by 1996, two full years before Wakefiled’s first paper;

2. That Peltola said on BBC that his main study did not look for autism and IBD; and

3. That many knowledgeable epidemiologists, including the authors of the latest study from Denmark (Medgaard Madsen et al) have criticized the methodology of previous “Peltola Team” studies. Makela and Associates were so intent on shooting down Wakefield’s work that even in a paper titled “Neurologic disorders after MMR”, they found a way to mention that no hospitalized children with autism had IBD. (I can’t help but wonder whether Peltola’s Holiday Greeting cards mention IBD). Regardless of what Makela says, the fact is that the number of individuals who received assistance for IBD from the Social Security Institution in Finland doubled in nine years (9,737 in 1992 to 20,807 in 2001).

It is not clear why 352 children with autism were hospitalized during the study period. In the US, affected children are not usually hospitalized with a diagnosis of autism. Indeed, over here, such a diagnosis often compromises payment by certain HMOs.

The whole Makela study is based on ONE comparison: ” For encephalitis and aseptic meningitis, the numbers of events observed within a 3-month risk interval after vaccination were compared with the expected numbers estimated on the basis of occurrence of encephalitis and aseptic meningitis during the subsequent 3-month intervals”. If the children in the first group developed symptoms of encephalitis and meningitis within two weeks of vaccination, then causation is implied (medically and medico-legally). In this case, a comparison with the control group is meaningless and the author’s conclusion is unwarranted.

This study by Makela, Nuorti and Peltola will not be remembered for any convincing or striking finding. But it will be quoted though for another

reason: By stating, “The aim of this study was to assess whether an association prevails between MMR vaccination and encephalitis, aseptic meningitis, and autism” in an article titled “Neurologic Disorders after Measles-Mumps-Rubella Vaccination” the authors assert that autism is a neurological complication of MMR vaccination. Now that, we will not forget!

- F. Edward Yazbak, MD, FAAP TL Autism Research, Falmouth, Massachusetts TLAutStudy@aol.com

*

For the Fragile X File

RE: Steve McKee's Letter on Fragile X

I happen to have two children with autism, a boy and girl, who don't have fragile X. I have a good friend who has 3 boys with autism, where one of his 3 son's has fragile X.

His boys respond well to chelation therapy, as well as his wife (who received a series of Hep B containing mercury while pregnant with their fragile X child). They do well on Secretin, which they still do to this day. His children speak well, and even take piano lessons. They are lightyears beyond my children without fragile X. Their doctor was so shocked, and has been loud about genetic disorders being 'treatable', if they test what is else is going awry in the child and treat THAT.

Don't forget the mercury and other treatments, even if Fragile X is present. Maybe Fragile X just means higher succeptibility to toxins. I hope your organization is looking into this, as well as footing research of environment triggering the terrible things that can go wrong with Fragile X.

We are in this together, and we need this vital communication between all organizations. The idea of stopping research or investigating treatment because of one test result, is what is happening all over with autism. Luckily, there are parents who understand that no one out there has definitive answers, and they keep searching and helping their children.

- Julie Duffield, UT, B.S. Math and Chemistry

*

Dear Mr. President

As a citizen of the United States I am concerned about the safety of America. My sister was one of the emergency personnel that worked day and night around ground zero during 9/11 in the hopes more victims would be

uncovered whose lives she could save. Many of the firemen who were killed

were people she knew well through her work in the emergency room at St. Vincent’s Hospital. So yes, I understand the War on Terrorism.

As a citizen of the United States, I also am concerned about No Child Left Behind. But unfortunately, I do not see quite the follow through on this slogan on the part of the federal government, or from you as the leader of this great country.

I am a parent of a 14-year-old child severely handicapped by autism. For years I have been involved in a voluntary capacity with school districts and parents in special education. And for years, Mr. President, the states have been waiting for the federal government to fund the Individual’s with Disabilities in Education Act (IDEA). School districts do not have the funds to continue paying for all that they must in order provide for a fair and appropriate education, as well as to be in line with federal legislation. Of course, I understand that this has been going on for some time, before you became president. But now, you are in charge.

Think also, Mr. President, of the dramatic increase in numbers of children who have autism spectrum disorders in the United States. These are children who are entering our school systems in ever increasing numbers, who need intensive early education so they can become contributing members of society. The money that the federal government is not sending to help pay for these children’s education is going to have to come out of funds earmarked for general education, meaning that educational standards will once again decline. All the Children Will Be Left Behind, not just the disabled.

Speaking of disabled children, Mr. President, what is the point of the government’s requesting courts to seal the vaccine records of drug companies? Regardless of whether or not vaccinations are to blame for some children developing autism, do we continue to speculate or do we investigate?

Mr. President, when I read the newspapers, I have a hard time remembering that I live in The Land of the Free and the Home of the Brave. Lately, it feels like I am living in a South American country where drug lords and weapons go hand in hand. That’s what the Homeland Security Bill appears to be to many Americans.

Congressman Dan Burton is requesting a White House conference on Autism. In light of your philosophy of No Child Left Behind, and the escalating numbers of children diagnosed with autism and the crucial issue of school funding as well as the mysteries of vaccinations, I respectfully urge you, Mr. President, to grant Congressman Burton’s request. America’s children are counting on you, not on weapons.

- Chantal Sicile-Kira

>>>>> CONGRESSMAN DAN BURTON IS CALLING ON THE PRESIDENT <<<<<

TO HAVE A WHITE HOUSE CONFERENCE ON AUTISM. YOU

CAN SUPPORT REP. BURTON BY SENDING YOUR LETTER

URGING HIM TO DO SO AS WELL:

President George W. Bush

1600 Pennsylvania Avenue, NW

Washington, DC 20500

EMAIL: President George W. Bush: president@whitehouse.gov

(Make sure you send a copy of your letter to us: edit@doitnow.com)

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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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