FEAT DAILY NEWSLETTER Sacramento, California

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

RESEARCH

* Bowel Finding Suggests Autism Is AID

* Mercury Fills May Be Ailing Dentists

* Cortex Drug to Be Evaluated as Treatment for Fragile X Syndrome

and Autism

AWARENESS

* Letters to Time Magazine on Their Coverage of Autism

* Interns, Autistic Students Learn From Each Other

* Readers' Posts

Researchers from England have shown that unexpected bowel abnormalities in children with regressive autism may have a basis in autoimmunity.

The authors used a panel of monoclonal antibodies to study small bowel biopsies from children with autism in comparison to unaffected children with other diseases.

The abnormalities were distinct from previously reported conditions, pointing to the gut epithelium as a target of a specific immune response.

This finding suggests that autism may be an autoimmune disorder.

The work was performed by researchers at the Centre for Paediatric Gastroenterology, with the Inflammatory Bowel Disease Study Group, Royal Free & University College Medical School, London, UK; The IBD Research Unit, St. Mark's Hospital, Harrow, London, UK; Department of Medicine, Royal Free and University College Medical School, London, UK; Department of Histopathology, Royal Free and University College Medical School, London, UK.

It remains unclear whether autism is a single disease or a condition occurring as an end result of various abnormalities. Fundamental uncertainty remains about the relative input of genetic predisposition and environmental exposures.

Central to this uncertainty is the conflicting evidence concerning the incidence of autism. While there are several reports of rapid increase in incidence in Western countries -- suggesting an important environmental component -- others suggest that the increase is more apparent than real, and dependent on increased recognition, thus favoring a primarily genetic predisposition.

Most research has focused on the genetics of autism, and several genes have been implicated in classic autism.

This study is based on children with a form of autism characterized by regression in the second year of life, after apparently normal early development.

Most reports of immunological abnormalities in autistic children have been from this subgroup of affected children, and the authors cite the increasing body of evidence for abnormal immune regulation and autoimmunity in autism.

The initial observation of unexpected bowel pathology in autistic children came from the same group, and centered on pathology in the colon (Lancet 1998; 351: 637-641, American Journal of Gastroenterology 2000; 95: 2285-2295).

Use of immunohistochemical techniques had suggested a novel form of colitis, in which the epithelium of the colon was particularly affected (Journal of Pediatrics 2001; 138: 366-372), and, thus, possibly suggestive of autoimmunity.

In the current study, the authors report a highly unusual form of small bowel abnormality, subtle on routine staining, but with distinct and apparent autoimmune features.

Again the epithelium appears to be the focus of this immune response, with evidence of direct binding of self antibody to the surface of the epithelial cells (enterocytes), increased epithelial division and infiltration of T lymphocytes.

The authors used an extensive panel of monoclonal antibodies, and made comparisons to children with celiac disease, cerebral palsy and mental retardation, and apparently normal controls, none of whom showed this pattern of abnormalities.

The findings thus support an autoimmune basis for the unexpected bowel abnormalities in children with autism.

Many questions remain, in particular, the relevance of these findings to the general autistic population, as these children had more obvious bowel symptoms than commonly seen.

The authors avoid a direct suggestion that these bowel findings may be causal in autistic regression, but they cite reports that cognitive function is enhanced in some children with regressive autism when gut-based therapy is introduced.

They also raise the possibility that the bowel changes may be a manifestation of a primarily genetic condition affecting several systems in which disturbance of brain function is simply more apparent.

Further work thus clearly needs to be done to determine the role of the "gut-brain axis" in autism. However, confirmation that autoimmune responses really do contribute to cognitive regression in autistic children will raise the probability of a fundamental change in the treatment of autistic regression, based on modulating the immune response in children with early autistic symptoms.

(Reference: "Small intestinal enteropathy with epithelial IgG and complement deposition in children with regressive autism;" F Torrente, P Ashwood, R Day, N Machado, RI Furlano, A Anthony, SE Davies, AJ Wakefield, MA Thompson, JA Walker-Smith and SH Murch, Molecular Psychiatry 2002 Volume 7, number 4, pages 375-382.)

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Mercury Fills May Be Ailing Dentists

Dentists had excess mercury in their urine and nails: study

A study of 180 dentists by researchers at the Glasgow Royal Infirmary in Scotland found they had up to four times the normal level of mercury in their urine and nails and had more kidney disorders and memory lapses than the general public.

“We found several differences in the health and cognitive functioning between our dentists and the control group,” Dr. Ewan Macdonald said in a report in the Journal of Occupational and Environmental Medicine.

“These differences could not be directly attributed to their exposure to mercury, but as mercury exposure at higher levels is known to cause similar health effects an association cannot be ruled out,” he added.

Mercury has been used in dentistry for about 150 years but some dentists and researchers believe the fillings can give off harmful vapors that can be dangerous for dentists and patients.

Critics of the fillings claim the mercury can poison the body and lead to health problems affecting the kidneys and other organs and neurological diseases such as Alzheimer’s.

But dental associations say it is safe when mixed with other metals and there are no scientific studies to prove a link between the filling and health problems.

The researchers in Glasgow compared mercury levels in urine, hair and nail samples and the results of psychomotor skills, response times, word recall and health problems of the 180 dentists and an equal number of volunteers.

The dentists had higher levels of the metal in their bodies, reported more health problems and did worse on the tests than the volunteers.

“The prevalence of self reported renal disease and memory disorders reflects other reports and suggests that these may be occupationally

related,” Macdonald added. © 2002 Reuters Limited. All rights reserved.

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Cortex Drug to Be Evaluated as Treatment for Fragile X Syndrome and Autism

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PRNewswire-FirstCall via COMTEX - Cortex Pharmaceuticals, Inc, today announced that the company is collaborating with several research organizations to carry out a phase II clinical study to evaluate one of the company's AMPAKINE(R) compounds as a potential treatment for fragile X syndrome and autism. Organizations participating in the study include the FRAXA Research Foundation, Rush-Presbyterian-St. Luke's Medical Center in Chicago, and the Child and Adolescent Psychiatry Department at the University of Chicago.

"We're very excited about this," said Vincent F. Simmon, Ph.D., President and CEO of Cortex. "Currently there are no therapies on the market to treat fragile X syndrome or autism. However, in the past five years, basic research has led to an improved understanding of these diseases and a number of scientists have suggested that the use of a drug to enhance glutamate transmission could be beneficial. Our AMPAKINE compounds have been proven to enhance glutamate transmission and therefore are obvious candidates as potential new therapeutics. Cortex has not licensed these indications and retains full rights in the U.S. and abroad."

About Fragile X Syndrome

Fragile X is an inherited disorder and is the most common cause of inherited mental retardation, affecting 1 in 2,000 males and 1 in 4,000 females. Symptoms of fragile X syndrome include mental impairment ranging from learning disabilities to mental retardation, attention deficit and hyperactivity, anxiety and unstable mood, autistic-like behaviors, long face, large ears, flat feet, and hyperextensible joints, especially fingers.

Males are typically more severely affected than females. Although most males have mental retardation, only one-third to one-half of females have significant intellectual impairment; the rest have either normal IQ or learning disabilities. Emotional and behavioral problems are common in both sexes. Currently there are no therapeutic treatments for the disease, although medications are used to treat some symptoms.

Rationale for the Study

A variety of scientific evidence suggests that increasing glutamate neuronal transmission may be beneficial in autism and fragile X syndrome. Imaging studies demonstrate that areas of the brain that are extremely rich in glutamate transmission are less active in autistic patients. Molecular studies suggest that although genes involved in the AMPA-type glutamate receptor are more active in autistic patients, the density of AMPA-type glutamate receptors is decreased. Drugs that reduce glutamatergic transmission induce symptoms similar to those seen in autistic patients. Taken together, these facts suggest that enhancing AMPA receptor activity may be beneficial in autistic patients.

The scientific logic for using a positive modulator in fragile X is more complex but equally compelling. The genetic defect results in the reduction or absence of an important protein, FMRP. FMRP is believed to play an important role in allowing normal levels of AMPA receptor proteins to be made. Thus increasing the activity of AMPA receptors with an AMPAKINE may to some degree overcome the reduced number of AMPA receptors. FRAXA has previously funded a study of AMPAKINE molecules in fragile X mice.

The design of the Phase II clinical study is a randomized double-blind, placebo controlled trial lasting four weeks after a one-week placebo run-in and ending with a two-week washout period. 50 patients from the Chicago area will be recruited for the study. It is anticipated that enrollment will occur over a two-year period. Outcome measures will include testing in four domains:

-- Attention and executive function

-- Spatial and verbal/auditory memory

-- Language domain

-- Behavior domain

Copyright (C) 2002 PR Newswire. All rights reserved.

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Letters to Time Magazine on Their Coverage of Autism

Any time the incidence of a disease rises ten-fold; there is cause for alarm. When that disease disables hundreds of thousands of children in a silent holocaust, that sounds more like a national emergency. But autism remains a footnote in NIH funding of disease research while the CDC cannot be bothered to count the national incidence. Increases like this must come from somewhere. Why aren't we more consumed with the search?

The answer is complicated. Most experts are preoccupied with autism's genetic causes. Not surprising in the age of the genome, but an inquiry of marginal relevance in the face of such dramatic increases. Most parents prefer straighter arguments. You mention the vaccine concerns and cite the MMR theory but fail to mention an even more plausible hypothesis, the increased exposure to mercury via three different vaccines: DPT, haemophilus influenza B and hepatitis B. All three contained the preservative Thimerosal (made from 49.6% mercury); the last two were added to the childhood schedule in October 1990 and November 1991, respectively.

When mercury exposure in these vaccines increased, the incidence of autism went straight up. This could be coincidence, but mercury is a well-known and potent neurotoxin, especially in the developing brain. Authorities realized in 1999 (oops!) that the cumulative vaccine dose of mercury exceeded EPA guidelines, particularly in the earliest months of life. Soon after, they halted new production and suspended the infant birth dose of hep B. No question, the mercury hypothesis fits the evidence. But there is, as yet, no credible investigation of the case. Why? Probably because discovering that policies designed to protect children actually harmed them would be, to say the least, inconvenient. And autism may be the tip of an iceberg of developmental delay. But if the shoe fits, we must all wear it: inconvenience should not block pursuit of the truth, wherever it leads.

Sincerely, Mark F. Blaxill

Cambridge MA (father of an autistic child and Board member of SafeMinds,

Sensible Action for Ending Mercury Induced Neurological Disorders)

There is Still More to Come

Four and a half years ago, I had no idea what autism was. I didn't need to know, because I never thought that I could be touched by it. As a single mother of a 2-year-old boy, I was struggling just to learn how to be a good mom. In January 1998, my life changed forever when I was told why my son Henry didn't speak. Why he threw violent temper tantrums. Why he seemed so odd.

Finding out that he had autism nearly destroyed me. Finding out that

he is part of a horrible trend didn't make it any easier. Today, at age 6

and a half, he still has never called me "mom" and has never uttered a word. There are too many little boys just like him out there, too many to still come.

Thank you for your autism cover story.

Jill Briggs

San Antonio, TX

On the morning of April 29th, I picked up the May 6th issue of TIME, and read every word of the article "The Secrets of Autism" along with the "First Person" accounts included in the report.

To me, Time's Asia editor Karl Taro Greenfield and Time's head arts reporter Amy Lennard Goehner in their "First Person" accounts exemplified the Unconditional Love that is so often felt, within families, for those in the Autistic spectrum. I learned from what I read, and felt satisfied, that the population-at-large could be educated in regards to what we as families endure, living with Autism. As parents of a 3 year old son with the condition, we have the opportunity to experience life with Autism, living somewhat in a World Apart, from neighbors and extended families that do not directly experience Autism on a daily perpetual basis.

I sent a letter to the TIME Editor noting that Autism in the year 2002 does not experience the same wide level of grassroots public support that benefits fundraising for research dollars, nor does it extract the same level of public empathy, for those suffering from AIDS, Breast Cancer, Parkinson's, Alzheimer's and so many other unfortunate maladies.

Rather, parents who are now just learning that their toddler has autism, are forced not only to confront the illness and its regressive effects on their child, but also must now act aggressively with local public health and education systems in states throughout the US, in order to obtain timely treatments that have been proven effective. I also stated that while the present system does recognize the benefits of Early Intervention, it does not effectively enforce the application of Early Intervention in thousands of cases nationwide.

It is important to increase awareness among others disaffected by Autism, of Autism's realities. Many are unaware that, regretfully, it is entirely too common for many parents in our state of New Jersey, to turn towards litigation to enforce the principles of the IDEA, enabling special needs students the opportunity to receive an appropriate education that may very well remediate the symptoms of Autism. Nationwide, school districts routinely oppose parents' efforts to treat these children by implicitly encouraging less treatment than medically prescribed, or explicitly pursuing placements in Less Expensive programs that are themselves appropriate only for a percentage of the students with autism.

Having said this, I am sure that TIME's cover story will serve to better educate the public and hopefully lead to greater compassion for those suffering from Autism and greater empathy for those families that count autism as a central component of their lives - if we continue to Advocate for All of those on the spectrum, not just our loved ones.

Adnan Shamsi

Father of Irteza, born 2/11/99

>>> What You Can Do Raise Autism Awareness: <<<

This is an opportunity to build upon the public awareness that is generated by such prominent coverage, if you think it important. Why is autism awareness so important? Because your neighbors, the government, the schools cannot help solve a problem they don't know about.

* WRITE A LETTER - If you haven't already, to Time Magazine and let them know your appreciation for their coverage: daily@timeinc.net. Make sure you send a copy to FEAT: news@feat.org

* REVERSE BOYCOTT: BUY THEM UP. Send a message. The magazine is now out on the stands. Buy as many as you can afford, then pass them around to friends and neighbors. Brisk sales are a feedback to which they pay attention.

* BECOME A PUBLICITY HOUND. Call up all your local media news departments and suggest to them there is a local angle to this national hot

subject: your story. Try newspaper editors first. If successful, you will have an article to send to TV and radio news sources as prove the topic is newsworthy. Then let us know, too.

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Interns, Autistic Students Learn From Each Other

Koren Boggs makes the one-and-a-half hour commute to DeSoto County from her Oxford home at least two days a week and sometimes more, depending upon when she's needed.

When you work with autistic children, you've got to go the extra mile, said the 25-year-old Boggs.

The University of Mississippi graduate student is an intern with the school system's autism early intervention education program. She is one of three Ole Miss interns in the school system this year funded through the DeSoto County School system and by the annual "Give A Kid A Chance To Be A Kid" Celebrity Golf Tournament.

"These kids are amazing," said Boggs, a behavior specialist with the DeSoto County School System, hired last year to work with autistic children. "They have this amazing potential which is often overlooked."

Every program has a success story and Boggs said she has her own favorite. "There is one little boy who has started to talk and be more interactive," said Boggs. "He was completely non-verbal at the beginning of the year. When he realized there was a value to communication using words with gestures because he could get the object he wanted, he began a complete transformation."

Boggs said there are some students with Asperger's Syndrome, a higher functioning form of autism. These students, such as 8-year-old Joshua Hammons of Horn Lake, often do better than other children.

Joshua, who attends Walls Elementary School, is an avid reader, smiles appropriately and understands conversations-yet, he did not take his first steps until he was 18 1/2 months old. His mother, Rhonda Hammons, said Joshua was originally misdiagnosed as having Attention Deficit Disorder.

"He had trouble learning anything until they (DeSoto school officials) put him into the autistic program. That's when his whole turnaround began."

Joshua has had to undergo speech therapy from the time he was nearly 3. "He still has some problems with words but in video games, he is really brilliant."

Having an autistic child in the family can be tough on parents and siblings alike.

Justin Hammons, 11, is Joshua's older brother and says approvingly, "He loves books, boats and planes. But he's gotten used to sitting in the front seat and if he doesn't get to sit in the front seat, he pitches a fit."

Rhonda Hammons said behavior problems with autistic children are often the most difficult to understand and comprehend. "People who don't know him think he's spoiled. He's not. He just goes in his room, pitches a fit once a week and then he's fine for the rest of the week." Hammons said families of autistic children learn to deal with outbursts and temper tantrums.

Dr. Lynn Crain, director of special education for the DeSoto County School system, said there is no known cause for autism but its numbers have increased exponentially over the past decade, not only in the United States but in Great Britain and the rest of Europe.

"Some people say we are just identifying more people but I don't think that's the whole answer," said Crain.

Childhood vaccinations are being investigated as a possible cause and dietary habits are now being looked at as a link to chemical imbalances and a way to improve behavior.

Whatever the cause or treatment, the DeSoto County School system is being looked to as a pioneering program in the Mid-South, she said.

And the program in DeSoto County started as the result of one child.

"We had one child move in who had autism and we sent one of instructors, Gwen McGee, to North Carolina for training and she began to learn more and more about autism," Crain said. "That was six years ago. We believe in training. Now we have some teacher assistants who know as much about autism as many of the experts."

Boggs said the faculty at Ole Miss recognizes the work being done in DeSoto County as ground breaking.

"I would definitely say it's a model program," Boggs said. "All of the parents who I've spoken to said it's really comforting to them to see someone who has a strong desire to see their children succeed."

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Readers' Posts

Registration for Concord AYSO VIP soccer on May 4, El Dorado Middle School. Families with kids who have autism or ASD from ages 4-18 are encouraged to sign up. Teams limited to kids with special needs. Players may also compete in Special Olympics events. David LaDue, Director VIP program, dladue@astound.net or 925-798-5956.

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Seeking Speech/Language Therapist (or graduate student) to be key player in a new, one-week summer camp program for Asperger's children (ages 9 - 12) in the Philadelphia suburbs. Camp to focus on social skills, teamwork, problem-solving, and fun academic pursuits. Please respond to Nelle219@aol.com.

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Looking for an aba therapist to work with a 4yr old boy w/ autism in Malden, Mass. this August Diane at dksullivan@attbi.com

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I am looking for a summer camp for my teenage son. He is 18 and has High-Fuctioning Autism/Aspergers. Looking for a program that meets the social needs of teens and young adults with ASD. We live in southern CA, but would be happy to hear of any good program, anywhere. Thanks. Emily emilyiland@socal.rr.com

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Amherst, Mass: I'm looking for a female to live rent-free in my home (she gets her own large bedroom and private bath) in exchange to 10-12 hours of babysitting weekly for 5-year-old boy with Asperger's Syndrome. A love of children and an interest in learning about A.S. are necessary. Contact me at lwentwo@crocker.com.

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We have a 4.5 yo son with ASD, we just started using Super Nu-thera. Is anyone out there using SNT and have you had any positive results? KJSeile@hotmail.com

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If you are part of a parent group trying to get services for your child, sharing resources, offering support, etc. or know of such a group, please send to this newsletter the group's name, an overland mail address and a phone number. Some autism groups are building a nationwide advocacy network and everyone doing advocacy needs to be plugged in. Important - Contact Lenny Schafer at editor@feat.org

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Looking for information and someone offering training in our area on Lovaas and ABA therapy. We live in southern Indiana. Austin is eleven and have tried many hospitals and trainings. Please email april_hoke@hotmail.com or april@pentusa.com. April

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Why is the pertusis vaccine not in question? Why the drugs given to women in labour and the actual labour scenarios are not being looked at as a possible reason for the increased numbers of children affected with aspergers and PDD or autism? In my small group of aquaintances and friends, we have an outragiously large proportion of children affected with one or another of these disorders. In my children's school we have a very high incidence as well. This is not genetic. If you are interested in contacting me, e-mail monarv@rogers.com

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