SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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October 3 - 4, 2002 Promote Your Event - Free! -

Send a CALENDAR LISTING: EVENTS@doitnow.com

CARE

* BOOK EXCERPT - When Your Doctor Is Wrong:

Hepatitis B Vaccine And Autism

TREATMENT

* Dietary Approach for Autism?

* On Schools Paying for GFCF Diets

MEDIA ALERT

* Investigative Dallas Report Regarding Autism & Vaccines Tonight

RESEARCH

* Structural Basis for Gluten Intolerance in Celiac Sprue – Paper

* The Social Deficits Of The Oxytocin Knockout Mouse

* Screening Young Children For Autism

And Other Social-Communication Disorders

* Putative Animal Models for Autism

ADVOCACY

* Special Fight For A Special Boy

FUNDRAISING

* 3,000-plus Attended the Inaugural Walk for Autism in Buffalo

* "Music To My Ears" Tribute Concerts in Boston and NY Information

* Brad Pitt, Jennifer Aniston and Courtney Cox Arquette, Others

Donate Emmy Designer Clothes

LETTERS

* Number 1 of "Bad Guys" Bacteria On Her List

* People Foist

* Stick to the Science, Please

* Readers' Posts

BOOK EXCERPT:

When Your Doctor Is Wrong: Hepatitis B Vaccine And Autism

By Judy Converse

I learned from Debbie Bermudes at Massachusetts Citizens for Vaccination Choice that, in my state, like most others, there is no legislative process for vaccine mandates. I was astounded to find that when it becomes law for a child to receive a vaccine in Massachusetts, legislators are normally not involved. Instead, the CDC tells state health departments that they want children to have yet another vaccine on their school entrance requirements.

Adherents of the view that a vaccine for every ill is a good thing, the health department agrees with little fanfare. A public hearing on the issue is only held when parents are concerned and aware enough to ask for one.

There is no vote, no debate. The health department simply tells the legislature to add another vaccine mandate to the law books, et voila: Your pediatrician starts telling you your kid must have this shot. Trusting the CDC's recommendations, as I was taught to do, pediatricians likely see no need to review literature for vaccine risks or benefits. Besides not having time to do this to begin with, there is virtually no independent, peer reviewed safety information published anyway. Literature abounds on injuries from the vaccine, but these reports get little attention without a public relations machine such as the CDC has through fifty state health departments. Even if your pediatrician questioned the recommendation of a new vaccine, he would be hard pressed to find academic literature or valid study information to support his concern. This is why it is so easy for officials to keep repeating that this vaccine is safe. No one has proven that it isn't, because no one has done a large scale epidemiological study which includes unimmunized controls. The government won't undertake this research, citing the excuse that there are no unvaccinated control subjects to be had. There are indeed, especially if we include countries like Sweden which have never used hepatitis B vaccine for infants.

It might be expedient to let the CDC make laws about vaccines in the manner described above if there were adequate safety reviews done before each vaccine gets its automatic market via these mandates. The trouble is, this hasn't historically been the case. The hepatitis B vaccine is not unusual in that there were no independent safety reviews before it was given to millions of children. It was hustled through the FDA approval process in an unprecedented five months. The only clinical trials done were those by shot manufacturers Merck and Smith Kline; these looked only at immunogenicity, not safety. They established that the shots created antibody titers in test subjects. They didn't know if it was safe, and they didn't ask.

But early in this vaccine's development, an individual by the name of John Hoffman notified the National Indian Brotherhood in Ottawa, Canada with concerns about a death in a human trial of the vaccine. Hoffman was from The Bell of Atri, a "public interest organization concerned with health, science, and public policy". In his letter, Hoffman quoted physicians working for Merck and the CDC as they nervously mention, in their June 1981 meeting of the FDA's Vaccines and Related Biologics Committee, "a sudden death as we have had in our vaccine study within seven hours of receiving hepatitis B vaccine...it makes us a bit uncomfortable". Indeed. Imagine how the guy who died felt. The doctors go on to gingerly state, according to Hoffman, that one dead Native North American shouldn't stop licensure. Dr.

James Maynard of the CDC is quoted in the letter: "I think this is a problem that must be considered for all vaccines. I am not saying that this should be any impediment to licensure, but I think this is something we have all got to consider." Hoffman's letter is one of restrained outrage for the lack of follow up for human subjects and adverse events, and the use of Native Alaskans for vaccine trials without informed consent. The human plasma derived vaccine used in these trials was pulled from market use in 1992 because, according to the CDC, of "unbased fears of transmission of live hepatitis B virus or other blood borne pathogens".

The Holy Grail became a new, genetically recombined vaccine which would be free of the specter of tainted human plasma or a potentially injurious attenuated virus. Recombivax (from Merck) and Energix-B (from

SmithKline-Beecham) were just the ticket. Merck's Recombivax was the first recombinant vaccine mass marketed, and the first vaccine of any kind given to neonates (infants 0-30 days old). It is made by inserting genetic material for hepatitis B antigen into yeast cells. Yeast cells then produce the antigen, which is harvested and purified. The vaccine contains over 95% hepatitis B antigen protein and up to 5% yeast protein, along with aluminum hydroxide, as well as 12.5 micrograms of mercury in stocks up through 2001.

Merck initially recommended marketing its new recombinant DNA (rDNA) hepatitis B vaccine based on a trial of only thirty-seven adults. The trial reviewed immunogenicity alone and had no safety data. It essentially showed that an rDNA vaccine could generate immunity as well as its predecessors.

Safety was apparently assumed. The FDA's Vaccine and Related Biological Products Advisory Committee replied that "immunogenicity data alone are not sufficient" to grant licensure and marketing rights for the hepatitis B vaccine. Donald Hopkins, MD, a Committee member and employee of the CDC, remarked that "...there are enough unknowns here to make me feel that we do need a trial of some sort." But the FDA's Office of Biologics Director John Petricciani, MD, wanted to speed things along. He and Office of Biologics Medical Officer Henry Miller, MD, suggested that the FDA grant licensure before clinical trials for safety were done. Another Office of Biologics staffer, Robert Gerety, MD, chimed in, saying "...post marketing testing should be able to resolve [safety and efficacy questions] in a very short amount of time." In other words, "sufficient data" to measure the new rDNA hepatitis B vaccine's safety would come from market use on an unwitting public, including infants. Making FDA officials especially eager was Petricciani's awareness that "...there are broader implications for rDNA biologicals in the sense that the efficacy requirements, which are established for rDNA hepatitis vaccines, also set something of a standard for other rDNA products." Enough data existed to satisfy him that the rDNA vaccine worked - it imparted immunity - and he knew that the technology used to make it could be a template for countless future biological products. The profit potential was unimaginable; just about any vaccine could be made for any disease, if this were successful. Good news of the vaccine's performance would pave the way. Injecting newborns without informed consent, as happened throughout the 1990s, provided big, free data sets. Ironically, even retrospective analyses of VAERS data on this vaccine find inexplicable, excessive adverse events, seizures, and deaths. Unbelievably, the authors waive these off as "probably unrelated" to the shot, but offer no data to support their opinion.

Ultimately, Merck did test the vaccine on a few hundred children, in a trial it describes in its own product insert. Whether or not infants were included in the trial is unclear. Not surprisingly, they gave their new product high marks for safety, even though various adverse effects were noted in 17% of the subjects. This data has been roundly criticized since test subjects were only followed for three days post injection. No measure of longer term effects was made, and it is these which seem to play out so viciously in children who react.

Hopkins' concerns were prophetic. The FDA has been aware of insufficiencies in the VAERS since at least 1995, when outside consultants were hired to point them out. Aside from highlighting the inadequacy of a passive system - which by design causes under reporting of adverse reactions - the review team urged the FDA to perform more "pre-licensure safety trials" as well as to provide "more direction regarding post marketing surveillance" to pharmacies and manufacturers. Weeks later, CDC Vaccine Safety and Development Activity Chief Robert Chen, MD, said in another meeting that while measures were taken to define effective vaccine dose before marketing, "similar efforts were not done for safety." Years later, the FDA is still dragging its feet. Essentially nothing has been done to change either how adverse reactions are reported or how vaccines are scrutinized for safety before market use.

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Dietary Approach for Autism?

estionId=114834 <- - address ends here.

For what it's worth, today's (Wednesday) question for the day on Dr. Andrew Weil's website is:

"What is your insight on gluten-free / casein-free diets for young children with autism, and do you have any suggestions/recipes for implementing this diet?"

For those who aren't aware of Dr. Weil, here's some info on the "Meet Dr. Weil" link on the site:

He is a clinical professor of internal medicine as well as the founder and director of the Program in Integrative Medicine at the University of Arizona's Health Sciences Center in Tucson, where he is training a new generation of physicians. He has recently established a nonprofit organization, the Polaris Foundation, to advance the cause of integrative medicine through public policy, education, and research.

Dr. Weil is an internationally recognized expert on medicinal herbs, mind-body interactions, and Integrative Medicine. A frequent guest on Larry King Live and Oprah, he has also hosted his own PBS-television specials. In addition, Dr. Weil is the author of eight books including the national bestsellers Spontaneous Healing, Eight Weeks to Optimum Health, and Eating Well for Optimum Health.

Q. "What is your insight on gluten-free/casein-free diets for young children with autism, and do you have any suggestions/recipes for

implementing this diet? " -- Caroline Beautier

The theory that gluten-free/casein-free diets can help young children with autism comes from studies suggesting that some cases of autistic behavior result from allergies or intolerances to the proteins in milk

(casein) and found in wheat (gluten, also in other grains). Limited research does show that some children with autism can’t break down the proteins completely. Instead, fragments of them (peptides) get into the bloodstream and the central nervous system before eventually being eliminated in the urine. Several groups of researchers have identified these peptides in urine samples from children with autism. Some of the peptides are quite similar to morphine and, in theory, may be the agents that cause autistic behavior.

My colleague, pediatrician Sandy Newmark, MD, tells me that he is “absolutely convinced” that gluten-casein free diets can help a certain proportion of youngsters with autism and recommends trying them whenever possible. There certainly is ample anecdotal evidence attesting to marked improvement in autistic patients as a result of removing foods containing gluten and casein from their diets. Dr. Newmark recommends the book “Is This Your Child?” by Doris Rapp, MD to parents of children with autism who want to try dietary approaches.

Dr. Andrew Weil

Know any success stories for treating autism? Share them on the

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Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

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* * *

On Schools Paying for GFCF Diets

"Does anyone have information about the school paying for a special diet (GFCF, yeast-free, etc.)" asked one of our readers in a recent Readers' Posting. "We are low income, and qualify for free breakfast and lunch. Also, the class goes out to eat once a week. I've asked the school for accommodations, but they won't accommodate his special diet, and I have to send all food in with him."

The following may be of some help. It refers specifically to the use of Sara's Diet (lutein-free), a specific regimine, but is applicable to any special diet:

"The Individuals with Disabilities Act (IDEA) provides for various services which can be of assistance for those who cannot afford the appropriate medical testing and evaluations. Additionally, under the circumstances of a residential program, it can be argued that the cost of the diet’s food and food supplements themselves ought to be covered by the Local Education Agency (LEA). One would expect a significant resistance to these interpretations from a school system initially.

Therefore, those who can afford to bear their own costs might be advised to do so if they are most interested in implementing the diet, instead of fighting over the cost of the diet. Yet, for subsequent children, who follow after some child in the community responds well to the diet, and also for those children whose parents are not blessed financially to be able to bear these extra costs, the following information should prove helpful:

Supplemental Payment for Special Dietary Needs In a Residential Setting and Payment for Medical Diagnostic and Evaluation Services; 20 USC 1401 ( 17 ) and 34 CFR 300.302

As a precursor to the financial/legal aspects about to be discussed, it would be appropriate to review certain pertinent information, which factually justifies a request for payments. This and other similar information should be related to your LEA. As we know, certain autistic children have become symptom-free based upon dietary intervention. Other autistic children faithfully and correctly on the diet for over 6 months have all made significant behavioral improvements. Sandra Johnson Desorgher has developed a lutein-free dietary approach to dealing with autism. Sandra has a database of over 1200 children on the diet, approximately 10% are symptom free.

Furthermore, this figure is unfair to the diet because effective tracking is not currently possible due to limited financial resources. Additionally, effective implementation and monitoring of the diet is also significantly restricted due to financial limitations. Sandra’s 14-year-old autistic adopted daughter (now 19), who Sandra already had on a gluten-free, casein restricted diet, became symptom-free in two weeks after including a carotenoid pigment- free aspect to her diet. Sara was 11-years-old when she became symptom-free and this status continues.

What is preliminarily needed to most effectively undertake the dietary approach is certain diagnostic testing for food allergies and intolerances, digestive system deficiencies, and immune system deficiencies (or excesses). These diagnostic tests provide the basic information needed to construct an appropriate diet for these autistic children as well as to determine what, if any, medical treatment is appropriate.

The capsulated theory is that deficiencies in the immune, digestive and metabolic systems as well as food allergy and food intolerance result in body chemistry imbalances which effect the neurotransmitters in the brain. Thus, one can readily recognize how useful and appropriate medical testing is. The IDEA starts at Title 20 USC § 1400. Title 20 USC § 1401 ( 17 ) specifically defines “related services” which are to be provided, at no costs to the parents, under the IDEA as “Including medical services, except that such medical services shall be for diagnostic and evaluation purposes only”. Inasmuch as the requested payment would be for diagnostic testing charges and are not related to charges for medical treatment, these charges should certainly be covered.

Theoretically, the use of one’s insurance should not even be required because one’s policy normally has a payment limit and therefore, it would be considered a cost to a parent contrary to the concept of a Free Appropriate Public Education ( FAPE ). One might offer, in the spirit of cooperation, to utilize their limited insurance resource so long as the LEA is willing to reimburse for uncovered testing charges and such other charges as co- pays and the applicable deductibles.

As far as reimbursement for extra food costs, if a child is in a residential program and if the private school charges parents for special diets, the LEA should consider several factors as to the issue of reimbursement. First, federal regulation at 34 CFR 300.302 requires that a residential program must provide that “non-medical care and room and board, must be at no cost to the parents of the child.”

Therefore, the LEA is required by law to cover such costs as supplemental food charges and food supplements that are appropriate for the child’s dietary needs. Second, while there may be current increased food costs that are directly attributable to the child’s diet, the LEA and the community which serves would ultimately save substantial financial funds inasmuch as the child could very possibly ultimately be able to return to his/her home, if the child is in a residential placement, or otherwise require less or no services.

Furthermore, the children, who have undertaken this dietary approach and who have not yet become symptom-free, after 6 months on the diet, have all manifested significant behavioral and other improvements. This makes them more available for training, eventually less in need of more restrictiv e environments, and less dependent as they become mature adults. This adds up to savings for the LEA as well as long term savings for the community as a whole in years to come."

[By Kenneth Joel Haber, a practicing attorney, General Counsel to the WCAP Corporation, and a former Assistant United States Attorney who has a child on Sara’s Diet. Mr. Haber practices in the field of health care law as well as other areas of practice. Mr. Haber’s advocation is special education law.]

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MEDIA ALERT

Investigative Dallas Report Regarding Autism & Vaccines

From vaccine damage advocate Jeff Sell. Our friend, Valeri Williams, was kind enough to call me to let me know that Channel 8 - WFAA in Dallas will be airing another investigative report regarding autism & vaccines on tonight's (10/3/2002) news cast. The story will be on the web after it airs.

If you would, e-mail her a nice "thank you" note and let her know how much we appreciate all that she is doing for us.

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RESEARCH

Structural Basis for Gluten Intolerance in Celiac Sprue

Lu Shan, 1 Øyvind Molberg, 5 Isabelle Parrot, 1 Felix Hausch, 1 Ferda Filiz, 1 Gary M. Gray, 2 Ludvig M. Sollid, 5 Chaitan Khosla 1,3,4 *

Celiac Sprue, a widely prevalent autoimmune disease of the small intestine, is induced in genetically susceptible individuals by exposure to dietary gluten. A 33-mer peptide was identied that has several characteristics suggesting it is the primary initiator of the inflammatory response to gluten in Celiac Sprue patients. In vitro and in vivo studies in rats and humans demonstrated that it is stable toward breakdown by all gastric, pancreatic, and intestinal brush- border membrane proteases. The peptide reacted with tissue transglutaminase, the major autoantigen in Celiac Sprue, with substantially greater selectivity than known natural substrates of this extracellular enzyme. It was a potent inducer of gut-derived human T cell lines from 14 of 14 Celiac Sprue patients.

Homologs of this peptide were found in all food grains that are toxic to Celiac Sprue patients but are absent from all nontoxic food grains. The peptide could be detoxified in in vitro and in vivo assays by exposure to a bacterial prolyl endopeptidase, suggesting a strategy for oral peptidase supplement therapy for Celiac Sprue.

Celiac Sprue (also known as Celiac disease or gluten-sensitive

enteropathy) is an autoim-mune disease of the small intestine caused by the ingestion of gluten proteins from widely prevalent food sources such as wheat, rye, and barley. In many human leukocyte antigen (HLA) DQ2 (or DQ8)– positive individuals, exposure of the small intestine to gluten induces an inflammatory response, leading to de-struction of the villous structure of the intestine (1– 3). It commonly appears in early childhood, with severe symptoms including chronic diar-rhea, abdominal distension, and failure to thrive. In many patients, symptoms may not develop until later in life, when the disease symptoms include fatigue, diarrhea, and weight loss due to malabsorption, anemia, and neu-rological symptoms. Celiac Sprue is a life-long disease, and if untreated it is associated with increased morbidity and mortality (4, 5). Despite its high prevalence in most popula-tion groups ( 1: 200) and serious manifesta-tions, the only effective therapy is strict di-etary abstinence from these food grains.

The principal toxic components of wheat gluten are a family of closely related Pro-and Gln-rich proteins called gliadins (6, 7). How-ever, given the enormous biological diversity and unusual chemistry of gluten proteins, and the absence of satisfactory assays for gluten toxicity, the structural basis for gluten toxic-ity in Celiac Sprue remains unclear (2). Not-withstanding the heterogeneity of T cell epitopes in gluten, a few epitopes appear to account for most of the -gliadin– specific recognition

by CD4 T cells from patients (8, 9). These peptides are also substrates

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The Social Deficits Of The Oxytocin Knockout Mouse

ds=12359512&dopt=Abstract <- - address ends here.

Winslow J, Insel T.

Numerous studies have implicated oxytocin (OT) and oxytocin receptors in the central mediation of social cognition and social behavior.

Much of our understanding of OT's central effects depends on pharmacological studies with OT agonists and antagonists.

Recently, our knowledge of OT's effects has been extended by the development of oxytocin knockout (OTKO) mice.

Mice with a null mutation of the OT gene manifest several interesting cognitive and behavioral changes, only some of which were predicted by pharmacological studies.

Contrary to studies in rats, mice do not appear to require OT for normal sexual or maternal behavior, though OT is necessary for the milk ejection reflex during lactation.

OTKO pups thrive if raised by a lactating female, but OTKO pups emit fewer ultrasonic vocalizations with maternal separation and OTKO adults are more aggressive than WT mice.

Remarkably, OTKO mice fail to recognize familiar conspecifics after repeated social encounters, though olfactory and non-social memory functions appear to be intact.

Central OT administration into the amygdala restores social recognition.

The development of transgenic mice with specific deficits in social memory represents a promising approach to examine the cellular and neural systems of social cognition.

These studies may provide valuable new perspectives on diseases characterized by social deficits, such as autism or reactive attachment disorder.

PMID: 12359512 [PubMed - in process]

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Screening Young Children For Autism And Other Social-Communication Disorders

ds=12357915&dopt=Abstract <- - address ends here.

Blackwell PB.

Division of Communicative Disorders, Department of Surgery, University of Louisville School of Medicine, Louisville, KY, USA.

pbblac01@louisville.edu

Autism is a severe, multifaceted disorder of childhood that affects a large number of young children, causing social and communication disorders.

Identification at a young age allows early treatment and the possibility of an improved outcome for these children and their families.

This article reviews three screening instruments (Table 1): The Checklist for Autism in Toddlers (CHAT), the Modified Checklist for Autism in Toddlers (M-CHAT), and the Infant/Toddler Checklist of Communication and Language Development (CHECKLIST).

These instruments may be used in the primary caregiver's office as an initial attempt to identify children who should be further examined for autism and other social-communication disorders.

PMID: 12357915 [PubMed - in process]

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Putative Animal Models for Autism

Increased Monoamine Concentration in the Brain and Blood of Fetal

Thalidomide- and Valproic Acid-Exposed Rat

ds=12357053&dopt=Abstract <- - address ends here.

Narita N, Kato M, Tazoe M, Miyazaki K, Narita M, Okado N. Neurobiology Laboratory, Institute of Basic Medical Sciences, University of Tsukuba, Ibaraki, Japan [N.N., M.K., K.M., M.N., N.O.], and Department of Pediatrics, Koshigaya Hospital, Dokkyo University School of Medicine, Saitama, Japan [N.N., M.T.].

Autism is defined as a congenital neurodevelopmental disorder in which serotonergic dysfunction may be involved in its pathogenesis.

One of the characteristic laboratory findings in autistic patients is hyperserotonemia, although its mechanism has not been elucidated to date because of difficulties in studying human patients.

Recent reports have demonstrated that thalidomide or valproic acid exposure during early embryonic days (first trimester) in humans causes higher incidence of autism.

Morphologic abnormalities found in autism (e.g. cerebellar anomalies, reduced motor neuron numbers) have been reported in animals administered with these teratogens prenatally, suggesting the possibility of the use of these animals as an experimental autistic model.

In this study, we evaluated monoamine levels in the brain and blood of rats exposed to teratogens prenatally.

Of the groups exposed to thalidomide on embryonic day (E)2, E4, E7, E9, and E11, a significant increase of hippocampal serotonin was only observed in the group exposed on E9.

Furthermore, E9 thalidomide and valproic acid exposure both resulted in an increase of hippocampal serotonin, frontal cortex dopamine, and hyperserotonemia.

These results thus indicate that two potentially autism-inducing teratogens, thalidomide and valproic acid, have the same effect on early monoamine system development in the brain and the blood, which may explain the pathogenesis of autism.

PMID: 12357053 [PubMed - as supplied by publisher]

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ADVOCACY

Special Fight For A Special Boy

Irish family in Buena Park on visitors' visas may have to pull autistic son out of school they say changed his life.

L

Buena Park – Nine months ago, the Lehanes left family, careers and their home in Ireland behind in hopes their autistic son could find help at a special school here. Hugh and Edel Lehane traded their comfortable Dublin lifestyle for a one-bedroom apartment in Buena Park and visitors' visas that don't allow them to work. They live on a dwindling savings account and the progress they see in their 5-year-old son, who has gone from uttering one or two words at a time to speaking in full sentences.

But all that progress could end in two weeks.

On Oct. 7, the Lehanes' visas will expire, sending them back to a land where they say services for children like Matthew are virtually nonexistent. They are devastated at the possibility Matthew might be yanked from the program they say is changing his life.

"If Matthew was to go home, it would be disastrous," said Hugh Lehane, Matthew's father. "If they keep working on him he really has a strong chance of being able to enter back into school at his own age level." Before he entered the Speech and Language Development Center, Matthew seemed to be disappearing into his own little world. Since he enrolled at the school, his comprehension, communication and social skills have skyrocketed, the first signs of real improvement in years. His parents are now able to communicate with their only child, who had been turning into something of a mystery back home.

The Lehanes want nothing more than for their son to continue moving forward, but it's not entirely up to them.

Immigration law allows people to enter the United States for a variety of reasons, provided they meet certain qualifications. Some visas, for example, are granted for up to 10 years and allow the recipients to work, said Kathryn Terry, an immigration attorney in Orange who is not working for the Lehanes.

"There are methods for them to get legal here," Terry said. "You've got to be creative." Options include applying to live here as a student, an investor, a religious worker or a musician, Terry said. But some of those require the applicant to have an academic degree, a corporation to transfer from or a sponsor, none of which Hugh or Edel Lehane have. Other options require money. For example, enough funds to operate a new business here. That's also a problem for the Lehanes, who have spent half their savings on living expenses here, including their $900-a-month apartment. In Ireland, Hugh Lehane worked as a musician and Edel Lehane as a free-lance journalist.

Despite the challenges, Terry said she believes the Lehanes' chances of staying here are good.

Still, there are some pretty big hurdles to clear.

"If they have no relatives, an unskilled laborer with no one to petition, it's more difficult," said Ron Rogers, a spokesman for the Immigration and Naturalization Service. "If they possess a special skill or have a relative living here, it's a lot easier." The Lehanes are hopeful but realistic. They are willing to do whatever it takes to keep their son in school.

"Matthew has changed so much," Hugh Lehane said. "It's like magic at this place. ... It sounds too good to be true."

The Lehanes spent hundreds of hours in Ireland searching fruitlessly for a school for Matthew. They struggled for three years before stumbling on the Speech and Language Development Center while visiting Los Angeles in January.

"We'd go around the campus saying, 'Yes, we were right,' " said Hugh Lehane, describing the couple's reaction at seeing kids like Matthew who were getting help – and succeeding.

"It would be different if there were some services in Ireland," Hugh Lehane said. "It's like we're in the dark ages. There's been so many years of cumulative neglect of special-needs services." In Ireland, teachers qualified to deal with special-needs kids are scarce, Hugh Lehane said. Also, government funding for special-education services falls far short of the need, translating into a lack of schools.

In the last 47 years, thousands of children at the private Speech and Language Development Center have received schooling and therapy for disabilities ranging from speech problems to severe autism. Many students are referred to the school through public school districts, which are required by law to educate kids with special needs.

Matthew has been on a scholarship since he began attending classes here, which costs the center approximately $115 a day. Matthew's scholarship is not intended to be long term, said Muff Elstran, director of community relations at the center. The money to help families with special circumstances comes from fund raising.

The Lehanes have talked with lawmakers and are working with an immigration attorney who they hope can help make their case. Soon.

"We want to stay as long as we can," Hugh Lehane said. "There's nothing like this at home."

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FUNDRAISING

3,000-plus Attended the Inaugural Walk for Autism in Buffalo

[From a NAAR organization announcement.]

Over 3,000 enthusiastic people attended the Inaugural Walk for Autism in Buffalo held on Sunday, September 29, 2002 at Delaware Park and raised $93,000! Go Buffalo!

We are grateful to the many families, volunteers, and donations that made the walk such an enormous success including: Honorary Co-Chairs, "Baby" Joe Mesi, NYS Heavyweight Boxing Champion, Sam Hoyt, NYS Assemblyman, Body

Electric, and Star 102.5. Corporate sponsors: Fantastic Sams, State

University of New York at Buffalo, Wegmans, Taber Industries, Adelphia, Tops, Montana Mills Bread Company, Pepsi Cola Bottling Corp., M.J. Peterson Corp., Brawdy Construction, NYSOTA, Shady Acres Entertainment (Tom Shadyac, Film Director), Merrill Lynch, Tom Fontana (Award Winning TV Producer and

Writer) and WKBW-TV (Ch. 7)

Interested in leaving a lasting imprint on autism in 2003? Looking for new people to join the Planning Committee and for Corporate sponsors!

Walk donations (team/individual) should be sent to:

Monica Moshenko

Buffalo Walk F.A.R. for NAAR

P.O.Box 1077

Williamsville, NY 14231-1077

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"Music To My Ears" Tribute Concerts in Boston and NY Information

Tickets are still available for "Music to My Ears," the all-star concert tributes to Timothy White, the former editor in chief of Billboard, who suffered a fatal heart attack on June 27. White is survived by his wife Judy Garlan White and 10-year-old twins, Alexander and Christopher, who is autistic and has special educational needs.

The concerts, being organized by his BillBoard friends and staff, and which will take place on Oct. 7 at Boston's FleetCenter and Oct. 8 at New York's Madison Square Garden, will feature Sheryl Crow, Don Henley, John Mellencamp, Sting, Jimmy Buffett (in New York only), Billy Joel (Boston only), James Taylor, Roger Waters, and Brian Wilson (New York only). Net proceeds from the shows will benefit the family of Timothy White.

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

Brad Pitt, Jennifer Aniston and Courtney Cox Arquette Donate Emmy Designer Fashions to Auction for CAN, others.

doc Less Than One Week Left to Bid On and Own Celebrity Award Show Clothing Proceeds to Benefit Cure Autism Now, Heifer International, UNICEF and Union of Concerned Scientists

Actor/Television Show Outfit

Brad Pitt Christian Dior tuxedo and shirt

&"Friends" guest star Bulgari sunglasses

Jennifer Aniston Vintage Christian Dior gown

"Friends"

Courteney Cox Arquette Vintage Christian Dior gown

"Friends"

Bradley Whitford Ralph Lauren tuxedo

"The West Wing"

Jane Kaczmarek Heidi Kaczenski gown &

"Malcolm In The Middle" Pea in the Pod gown

[partial list.]

The first ever "Clothes Off Our Back" Emmy outfit charity auction where today's hottest television stars and Emmy nominees donate their award show formal wear to auction to the public -- all in the name of charity.

Proceeds from the auction to benefit Cure Autism Now, Heifer international, UNICEF and Union Of Concerned Scientists.

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LETTERS

Number 1 "Bad Guys" Bacteria On Her List

This bacteria has never been associated in medical studies done on autism, but. . .I have been for sometime making a list of which bacteria are inhibitors of DPPiv, #1 on my bad bacteria list is called Bacilli Cereus.

Bacilli Cereus is a food-borne illness, a psychrotrophic spore forming bacteria, inhibitor of DPPiv, found in fresh and pasteurized milk, infant foods and reconstituted infant milk formulas, bovine, human, and goat milk, and many other food stuff. Bacilli Cereus carries the variant Beta-Casomorphin-7, in addition to other casomorphines, as well as a producer of enterotoxins.

Sometimes found in additional foods such as heat treated sausages, rice, egg products, and infant rice cereal. The methods discovered to either suppress or retard the growth of Bacilli Cereus were lactic acid bacteria, the same bacterial strains found in Kefir grains, others include low or high temperatures, chemicals, gases, the lactoperoxidase system, micro filtration, bactofugation, lactoferrin-related proteins, sanitation, flavors, and naturally occurring spore germinants.

Abstracts are available upon request.

- Linda Carlton Carltonl@Citadel.edu

People Foist

I love your "newsletter". I have a suggestion -- let's try to promote everyone using "person-first" language. It's much more respectful to use the term "children with autism" as opposed to "autistic children". They are so much more than "autistic children". Thanks.

-Erin Kenney

From the Editor: Thank you for your note. Our policy to accept either usage "children with autism" or "autistic children" as equivalent in demonstrating respect and correctness. We decline the "person-first" argument as contrivance some people, much less polite and supportive than yourself, use to correct the language of others where no correction is necessary, for the sole purpose of establishing a higher moral ground over the intended prey.

That someone finds a particular usage "much more respectful" than the other is a matter of personal preference in style and need not be foisted upon, nor even suggested to others. Autism is tough enough alone, without having to deal with contrived burdens. Let's put autism, not style, first. Besides, everything written here is rendered to be read by people first. <wink>

- Lenny Schafer

Your Happy Editor

(as opposed to "Your Editor with Happiness")

Stick to the Science, Please

I really wish you would stick to the science when choosing items to spotlight in your newsletter. I find that very helpful. . .as for the gore, well we all have enough devastation and sadness in our own lives and it sickens me to read headlines from stories like the few posted today. It's not what I call news.

-Roberta Daversa

From the editor: Thank you for your note. I am sensitive to the problem our format creates for those like yourself who prefer not to be exposed to the more mundane news related to autism. The SAR is not a scientific journal, although I find it gratifying that many readers have this expectation. It is a news clipping service that includes both scientific and lay reports. There is a wide range of material related to autism to address the interests of a wide range of readers. I put the news items in labeled categories so that readers can better identify and avoid the material that is not of interest to them.

Internet publishing, especially targeted and specialized daily vehicles, is a new medium for which the how-to manuals have yet to be written ("Publishing Online Daily for Dummies"?). This is mainly because the technology is still being developed and is barely exercised by the few of us willing to "brave the unknown." Even then, there are virtually no other larger scale daily publications that I am aware of being produced by non-commercial, non-profit interests. But the last time I researched this was six months ago - eons in internet time. Please be patient. If the internet was TV, this would be 1948. (Besides, who with family autism has time for TV nowadays?)

-Lenny Schafer,

Izak's Dad

Editor

* * *

Readers' Posts

I wondered if anyone could recommend an OT who wld be willing/happy to work alongside an ABA programme. We live in Kingston,Surrey, and have a daug0. Renu Wadhwani [w_renu@africatravelshop.com]

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Looking into Fast Forward reading/attention program for high-functioning six y.o. Anyone with experience using this for your children? It's an expensive program, and I would like to hear from other parents if it seemed to help with expressive/receptive language skills and increase in attention skills before we spend a lot of money. Please email Kris at krisschlepp@aol.com

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We are in need of a fund raiser who will volunteer time to write grants for an organization wanting to build a medical center for children on the spectrum. If you live in the Phoenix area and have a child with Autism, Asperger's or ADHD, we will gladly exchange services. Write to crcjct@ix.netcom.com

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Hi everyone! I had written during the summer about my 13 year old Nick and his sound sensitivities and was so very comforted by all of you! He had seemed to become extemely sensitive to sound, especially crying babies and we were not sure what to do and it had put a strain on our lives on a daily basis. Honestly, it was the first time I had become really scared about the future. The good news is (and there is some!) Nick is no longer having those sensitivites as before because we discovered when we took him off Adderall for his attention problems those issues stopped. Dr. Rimland has good suggestions and I plan to try diet and vitamins in the future. One last thing is that I wish we could change the name Autism to "Vaccine injured" Christinna Guzman.

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I am currently researching information about different successful programs used for helping autism. Does anybody know of any information linking PECS and ABA, such as how ABA validates PECS? Does anybody have any information pertaining to peer-reviewed and/or double-blind studies done on PECS in the 1980’s to present? Please respond to: projectquestion@hotmail.com

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