NORTHEAST LA CHAPTER, AUTISM SOCIETY OF AMERICA

P.O. Box 4762, Monroe, LA 71211

www.autismnela.org

September, 2004

Compiled and edited by Lynda Huggins

The purpose of this newsletter is simply to provide you with information on various therapies, resources, activities, and conferences. My intention is to inform. I do not endorse any treatments or therapies presented here. I provide information so that persons who are involved in the lives of individuals with autism are knowledgeable of what is available and can make an informed decision when considering various options. Please feel free to reproduce any part of this newsletter for redistribution to others. The more people know about autism, the more they understand our kids!

State Autism Conference in Monroe, Nov. 2005!

Our chapter will host the State Autism Conference next year! It will mean a lot of work and we will need a lot of help. The dates are set - November 11-12, 2005 and the location will be the Holiday Inn Holidome. We plan to bring in some of the best autism experts to speak on topics of interest to all. We plan to include the topics of early intervention, biomedical treatments, educational strategies, and adult issues. What specifically would you like to see included? We need to hear from you ASAP as we are already contacting prospective speakers. This is an opportunity to bring information to everyone involved in your child’s life. Come to our monthly meetings and volunteer to help in some way.

We will be approaching area businesses seeking sponsors to help with the conference expense. We need your help NOW in a very important way. Companies are more likely to contribute to a cause that directly affects its employees. Please call (343-7698) or e-mail me (oh_mom@yahoo.com) with the name of your employer(s). We will be contacting companies by the end of the year, in hopes of being included in their plans for 2005. If you are aware of a grant source, contact us. As you know, we do not charge local dues. And without a major fundraiser, we depend on contributions to continue our work.

Magnetic Autism Car Ribbons

Our chapter has these brightly colored magnetic car ribbons available! We are selling them as a fundraiser. The price is $5. You need one for every vehicle in your family (and extended family)! You can pick them up at Families Helping Families or send a check to the chapter address – P.O. Box 4762, Monroe 71211. Make check payable to NELA ASA.

Research Studies seeking participants

EARLY DETECTION OF AUTISM SPECTRUM DISORDERS AND LANGUAGE IMPAIRMENT STUDY

The Kennedy Krieger's Center for Autism and Related Disorders REACH program has funding from the National Institutes of Health (NIH), including a STAART Center, to conduct research on the early detection of autism spectrum disorders and language impairment. Funding has also been awarded by the NIH for an early intervention study of autism spectrum disorders. Dr. Landa is the principal investigator of these studies. Three groups of children are being recruited for participation in the early detection study:
1. Children who are 18 months or younger who are late talkers, but who have no family history of autism.

2. Baby siblings less than 14 months of age having older siblings with autism.

 3. Typically developing infants at 6 months of age. For the early intervention study, children under age 3 with autism spectrum disorders are sought.

Parents interested in learning more about the study may contact Dr. Landa's team through email at: mailtreach@kennedykrieger.org or by calling the toll free number at 1-877-850-3372.

ADULT ASPERGER SYNDROME STUDY ANNOUNCEMENT 

This study will examine the preferences of adults (age 20 and older) who have Asperger Syndrome. Individuals who participate in the study will be asked about their likes and dislikes, and preferences in their daily lives including home, work, and free time. In addition they will be asked for information about their life history and sensory needs. It is our hope that we will have many participants since this study will be the first of its kind. This study is sponsored by researchers at the University of Kansas.


All information will be gathered by mail using surveys and questionnaires. Participants will be sent questionnaires through the mail with return postage paid envelopes provided for their convenience. All information will be confidential. Individuals will receive the results of their surveys and questionnaires. If you are 20 years old or older and have Asperger Syndrome, please email the researchers if you are interested in participating in this study.


The contact email address for this survey is:

adultasstudy@mail.ku.edu

 

PARENTS WHO HAVE TRIED ANY KIND OF DETOXIFICATION OR CHELATION THERAPY (ORAL,, I.V., TRANSDERMAL, SAUNA, ETC.) TO REMOVE MERCURY FROM AUTISTIC CHILDREN:

In ARI's ongoing (since 1967) monitoring of parent evaluations of various treatment modalities, we have never encountered a biomedical intervention with higher parent ratings of effectiveness than are now being reported for mercury detoxification and chelation. See the August 2004 update of parent ratings of "Biomedical Interventions" on our website:

www.AutismResearchInstitute.com (under heading: Topics of Special Interest).


Note that 75% of the 189 parents who reported using mercury detox on their children claimed "good" results. This is a higher "good" rating than any of the 76 other interventions -- better than any drugs, vitamins or special diets.


There is a great deal of disagreement and controversy about the various ways of detoxifying. ARI is actively engaged in learning "what works best," so we can inform parents and physicians. We have already contacted the 189 parents mentioned above, to learn more about their experience with detoxifying/chelation.

The ARI website includes the ARI Mercury Detox Consensus report, based on our February, 2001 Think Tank of experts. Much has been learned since then, so ARI is convening a second Think Tank of experts in late September. We would like to present our Think Tankers with the results of our mercury detox survey. If you did detox your autistic child and are not part of the group of 189 we are contacting separately, please complete the survey form RIGHT AWAY at:

www.AutismEval.com/DetoxSurvey


This email is now being sent to as many parents as we can reach. Many of you have experience with mercury detox done on your own or with help of a health-care practitioner. Your experience can add valuable information to our database. Please help!


Bernard Rimland, Ph.D., Stephen M. Edelson, Ph.D., Autism Research InstituteSan Diego, CA 92116


If you would like additional information about autism, please write to us at: ARI, 4182 Adams Avenue, San Diego, CA 92116, USA or send a fax to: 619-563-6840.

Autism/Asperger’s 2004 – Oct 21-22, Austin Texas

This conference features Dr. Tony Attwood from Australia, Eustacia Cutler (Temple Grandin’s mother), and these adults with Asperger’s Syndrome: Jerry Newport, Sean Barron, Alex Gilpin, and Scott Lembeth.

For more information, call Future Horizons at 1-800-489-0727 or www.futurehorizons-autism.com

For information on Asperger’s Syndrome:

http://www.aspennj.org/guide.html

http://www.med.umich.edu/psych/child/dd/sum2002nwsltr.htm

http://www.orgsites.com/md/asperger_syndrome_info/

All About Autism Conference Oct 26-27, Shreveport– Practical Ideas for Educators

Sam’s Town Hotel -This two-day conference is designed to provide teachers, administrators, behavior specialists, and educational support staff with high quality staff development related to autism spectrum disorders.

Be sure your child’s teacher is aware of this conference! Ask the school system to send those working with your child. The school system has monies specifically for teacher training in their budget!

For additional information Email: farekmcconnell@aol.com

MiniDAN! Conference – Nov. 6-7, Auburn Alabama

Autism is treatable! For all those interested in learning more about the successful biomedical approaches to treating autism, there will be a Mini DAN! in Auburn, Alabama, November 6th and 7th 2004.  Jaquelyn McCandless, MD (neurologist, psychiatrist, practicing DAN! clinician and author of Children with Starving Brains) will be joined by autism researcher Teresa Binstock and Maureen McDonnell, RN. The location is

Auburn University Hotel and Conference Center

241 South College Street

Auburn, Alabama  36830

The Mini DAN! format has a dual purpose. First, it was designed for those parents who are unable to travel to the larger DAN! conferences and for those who have requested smaller, more informal settings in which to learn the intricacies of the biomedical approach to treating autism.  The parent-focused segment will take place on Saturday, November 6, 2004

On the second day of the Mini DAN!, local physicians will learn effective DAN! based methods for assessing and treating children with autism.  Continuing medical education credits will be available for MD’s. To enhance the learning experience, the physician training will be limited to 25 practicing physicians.

Given the number of children affected by this disorder (1 in 250) and the major progress made by DAN! clinicians in treating, and at times, curing childhood autism, we urge physicians to attend this one day intensive training course.

To obtain more information about this unique and informative program or to register, go to www.DANconference.com

For questions call: 609-921-3717. Maureen H. McDonnell, RN DAN! Conference Coordinator

From Dr. McCandless:

For anyone who has not been attending the science sections of the recent DAN! Conferences, you might want to review the PowerPoint presentations of Dr. Richard Deth and Dr. Jill James (on the ARI-DAN! Site, www.autismresearchinstitute.com ) and their research on the effects of thimerosal on the methylation system and the ramifications of this on autism. As we are pulling in excellent and well-qualified scientists such as Dr. Boyd Haley, Dr. Deth, and Dr. James to explore the thimerosal connection, the evidence becomes more and more irrefutable that a certain subset of children have not been able to handle the thimerosal that was injected into them in early infancy. The resulting injury to the methionine synthase system and its resulting devastation to glutathione and the immune and nervous system is elegantly spelled out by their findings. The benefits we clinicians are seeing as we address these methylation defects are being more and more elucidated by what these researchers are bringing to us. I agree with many other commentators on this issue that the thimerosal struck the first blow (of course after the predisposing genetics), setting off the immune and gut impairment (well-known and well-documented effects of ethylmercury). Then come the frequent infections, increased antibiotics, and finally the inability to handle the onslaught of triple live vaccines in the MMR and the ensuing inflammation and autoimmunity that besets most of our children as they get their diagnosis in their second year of life. In my opinion, for anyone to separate the Hep B and MMR in this whole autism picture is folly, for they work together to disable our children, and the evidence is pouring in despite mainstream medicine and politics that injected ethylmercury in the form of thimerosal has been the primary trigger since it was mandated in 1991, and not removed until late in 2001 one (if then).

Yes, there are rarely kids who get autism without vaccines, but in my seven years of working on ASD children, I would say that 90-95% of kids in the U.S. that I see or know of as a clinician follow the pattern of Hep B plus the other 20 or so vaccines they get by the time they get the MMR, after which the immune system can no longer sustain them and the characteristic picture we call ASD becomes clinically apparent. The immune system, gut, and endocrine systems are damaged, and in different degrees in each child, making the clinical picture extremely complex and difficult to treat. Mercury doesn't just sit there waiting for us to send in a chelating agent to remove it. It has already damaged many enzyme systems and cellular patterns that are difficult to repair whatever we do, and autoimmune processes are daunting and hard to treat.

As a physician happily ignorant until my granddaughter was given the diagnosis of ASD 7 years ago, I have become completely disenchanted with many professional colleagues called "mainstream," most of whom receive all medical education after medical school by pharmaceutical reps who tell them the latest prescription they can write. Politicians who are grandly supported by the most profitable industry in the world are definitely not interested in an epidemic disorder that most likely has been caused by the pharmaceutical industry and gets well mainly by dietary and nutrient methods. However, the bottom line is that we have to keep finding out more and more and do everything we can to help these children REGARDLESS OF THE CAUSE OR HOW IT STARTED, so while the pharmaceutical companies deceive and distort and the politicians deny or persist in remaining ignorant of the scientific facts here, we will continue to make headway in finding ways to improve the health of our ASD children (and adults). Dr. JM

Congress Ordered to Investigate!

Office of Special Council ORDERS Congress TO INVESTIGATE HHS, CDC and FDA Wrongdoing Regarding Mercury in Children's Vaccines

Washington, DC - National Autism Association has announced that Scott Bloch, U.S. Office of Special Counsel, is calling for further investigation into the link between neurological disorders and Thimerosal, a mercury preservative found in childhood vaccines. In an OSC press release, Bloch states that the allegations of wrongdoing towards Health and Human Services (HHS), Centers for Disease Control (CDC), and Food and Drug Administration (FDA), "…raise serious continuing concerns about the administration of the nation's vaccine program."

Bloch also stated, ".it appears there may be sufficient evidence to find a substantial likelihood of a substantial and specific danger to public health caused by the use of Thimerosal/mercury in vaccines because of its inherent toxicity." Specifically, the OSC has asked Sen. Judd Gregg and Cong. Joe Barton, Committee Chairmen with HHS Oversight, to investigate these allegations:

Ethylmercury Thimerosal is still present in childhood vaccines and flu shots, contrary to statements made by government health agencies;

The heightened concern that CDC datasets from the Vaccine Safety Datalink (VSD) once showing a relationship between Thimerosal and neurological disorders may have been destroyed and independent researchers have been arbitrarily denied access to CDC vaccine databases.

● The CDC and the FDA colluded with pharmaceutical companies at a June 2000 meeting to prevent the release of a VSD study showing a link between Thimerosal exposure and neurological disorders including Autism, ADD/ADHD, Stuttering, Tics and Speech and Language Delays. The study's author, Dr. Thomas Verstraeten, and other CDC employees published a different version in the Nov. 2003 issue of Pediatrics, showing no link.

● That increasing clinical evidence showing a connection is being ignored by government health agencies.

The OSC's order for Congress to investigate wrongdoing underscores the inadequacy of the Institute of Medicine's (IOM) May 18th report stating "no link" between autism and Thimerosal. The IOM meeting was sponsored by the CDC, and the IOM panel used epidemiological studies, including the highly questioned CDC's Verstraeten Study mentioned above, to reach their conclusion while ignoring clinical and biological evidence showing a connection.

Visit http://www.osc.gov/documents/press/2004/pr04_07.htm or

www.nationalautism.org <http://www.nationalautism.org/>

It would be beneficial to contact the source below to register your feelings. Scott Bloch needs to hear this new information, needs to hear it from us, and needs to hear our stories again and again. It’s not over till it’s over....and it's far from being over.

Special Counsel Scott Bloch

U.S. Office of Special Counsel

1730 M Street, N.W. Suite 300

Washington, D.C. 20036-4505

OR FAX: (202) 653.5161 or (202) 653.5151

 

5th Circuit: Thimerosal Claims Against Lilly Not Barred

NEW ORLEANS - A federal appeals court has ruled that state tort thimerosal claims against Eli Lilly & Co. are not preempted by the Vaccine Act because thimerosal is not a vaccine and Eli Lilly is not a vaccine manufacturer under the terms of the act (Scott Moss, et al. v. Merck & Company, et al., No. 03-30958, 5th Cir.).

"Under the plain meaning of the Vaccine Act, Eli Lilly is not a vaccine manufacturer, so the Mosses are not barred from suing it," the Fifth Circuit U.S. Court of Appeals ruled Aug. 16. Scott and Janice Moss filed individually and on behalf of Amber Moss.

"Thimerosal is part of the finished product, to be sure, but it is not the finished product itself, and on its face the statute governs only lawsuits filed against manufacturers of a completed vaccine shipped under its own label and listed in the Vaccine Injury Table," the court held. "Not surprisingly, Thimerosal is not sold as a vaccine, nor is it listed in the statute's table."

The court denied that its opinion conflicts with Leroy v. Sec'y of Health & Human Servs. (2002 U.S. Claims LEXIS 284 [Fed. Cl. 2002]), which holds that thimerosal is a component of vaccines and not a contaminant or adulterant.

"Leroy . . . stands for nothing more than the unremarkable proposition that a Thimerosal-related injury, occurring as a result of the administration of a vaccine, is a vaccine-related injury within the meaning of the Vaccine Act," the Fifth Circuit held. "That does not end our inquiry, however, because a claim is barred under the statute only if it alleges a vaccine-related injury and is filed against a vaccine manufacturer. §300aa-11(a)(2)(A). It is this latter requirement that Eli Lilly fails to meet, and, as a result, the Vaccine Act affords it no cover from the Mosses' claims."

The court also refused to infer implied preemption in the Vaccine Act. "Congress could not have been much more plain in its desire not to preempt tort claims filed by persons who are ineligible to recover in the Vaccine Court. We therefore agree with the First Circuit that - assuming arguendo that state tort law permits claims for loss of consortium (and about which we express no opinion) - there is nothing in the Vaccine Act that implicitly or explicitly prevents this suit from going forward."

New Fears

U.S. call for flu vaccine rekindles fears for parents of autistic kids By Dorsey Griffith -- Bee Medical Writer

Five years after the federal government asked drug makers to remove a mercury-based preservative from childhood vaccines, the battle over vaccine safety rages on a new front.


Parents convinced that their autistic children suffered neurological damage as a result of vaccines felt vindicated once manufacturers agreed to remove the preservative, called thimerosal, from their products for children. They are outraged all over again now that the government wants babies immunized against the flu. The vast majority of flu vaccine supplies contain thimerosal. The decision to recommend the influenza vaccine for children 6 months to 23 months old came after last winter's devastating flu season in which 152 children died.


Although the federal government maintains there is no connection between childhood vaccines and autism, many parents of autistic children remain convinced of the link, and researchers have turned up tantalizing clues that support the possibility.


"I don't know if thimerosal causes autism or is a risk factor, but stepping back as a toxicologist, I have to ask, 'Why would you want to use mercury in vaccines?' "said Isaac Pessah, an autism researcher at the MIND Institute at the University of California, Davis.
Politicians are asking the same question. The state of Iowa has banned use of vaccines containing thimerosal, and other states, including California, are poised to do the same. Similar legislation has been introduced in Congress.


The movement worries public health officials who say legislative action could undermine efforts to protect children against a potential flu epidemic. Worse, they say, is their concern that until the case is closed on thimerosal, parents will opt against vaccinations and expose their children to preventable diseases.


But their worries have landed on a sea of deaf ears.

"Mercury is one of the most toxic substances on Earth. Why do we inject it into our kids' veins?" asked Elk Grove resident Bruce Kaminski.

Kaminski has two autistic sons, both of whom tested positive for excessive levels of mercury in their blood and urine. He believes his children were affected by mercury-tainted vaccines, as well as mercury-contaminated fish his wife consumed while pregnant and the amalgam dental fillings in her mouth. "If vaccinations are going to be given to our children, they ought to be clean and safe," he said.


Rhetoric on both sides of the debate has grown heated, with claims of bias, greed, faulty science and even conspiracy and cover-up.


"If it is ultimately concluded that in the 1990s we poisoned an entire generation of Americans, that's pretty bad," said Rep. Dave Weldon, a Florida physician pushing for passage of a nationwide ban on thimerosal-containing vaccines. "You're talking about a possible settlement against the government that could dwarf the tobacco settlement."


Dr. Steve Cochi, acting director of the CDC's National Immunization Program, counters that childhood vaccines are safe and that the government has no incentive to recommend an unsafe inoculation. "I am a pediatrician, a parent," he said. "A pediatrician is a child advocate."


Cochi said politicians wading into the debate with proposals for thimerosal bans will "cause potential problems with the vaccine supply, cause a great deal of confusion, and in some way legitimize a junk science that has been largely repudiated."


The debate over vaccine safety is rooted in two relatively recent phenomena: the dramatic rise in autism cases and the increase in the number of vaccines required or recommended for infants.

The term "autism" covers a constellation of neurodevelopmental disorders characterized by an inability to interact appropriately with the environment. The condition now affects as many as 20 of every 10,000 children. In California, the number of reported cases has jumped 400 percent since 1993 - from a caseload of 4,911 to 25,020.

Parents of autistic children, including the Kaminskis, often say their children were developing normally until about 18 months of age, and regressed after receiving the traditional childhood immunizations. The couple hasn’t vaccinated their third child, a 20-month-old girl who is meeting all developmental milestones, Bruce Kaminski said.


Concern about an autism-vaccine connection heightened when the CDC and the American Academy of Pediatrics in 1999 asked drug makers to remove thimerosal from childhood vaccines. The decision came after the Food and Drug Administration concluded that infants up to 6 months were getting amounts of mercury exceeding standards set by the Environmental Protection Agency.


The FDA and other government agencies maintained there was no evidence that the thimerosal in the vaccines had damaged children but said the move was a precautionary measure.


The number of recommended vaccines has grown in recent years. The CDC and the American Academy of Pediatrics now recommend that children between birth and 18 months get vaccinated against hepatitis B, diphtheria, tetanus and pertussis, Haemophilus influenzae type b (Hib), inactivated poliovirus, measles, mumps and rubella, chicken pox, pneumococcal disease and influenza. The crux of the debate is whether even trace amounts of thimerosal can lead to brain damage in young children.


While many argue that the slightest risk warrants removal of thimerosal from all vaccines, health officials say its use has enabled the production of large quantities of multidose vials of vaccines that are easier and less expensive to use. Switching to thimerosal-free, single-dose vials is a lengthy and costly process, officials said.


Until recently, thimerosal was used routinely in the production of vaccines against hepatitis B, Hib and diphtheria, tetanus and pertussis. In use since the 1930s, the preservative keeps the vaccine free of bacteria and fungi, allowing doctors to immunize up to 10 children with a single vial. "Thimerosal is the best preservative to use," said Dr. Thomas Saari, a member of the American Academy of Pediatrics' committee on infectious diseases. "It's a very effective way to manufacture vaccines cheaply."

But those who believe thimerosal is linked to autism argue that efficiency has come at too high a cost. And they are confounded by the government's decision to recommend the thimerosal-containing flu vaccine for babies after asking vaccine makers to remove thimerosal from other childhood vaccines.


Cochi, with the CDC, defends the decision. "We have to base policy and recommendations on what the science says, not on whatever way the political wind is blowing or who has been more successful in promoting mis-or disinformation," he said. "If we don't, there is a fear that either the vaccine supply will be compromised or parents will decide not to vaccinate against influenza." Cochi said that of the 100 million flu vaccine doses being readied for the flu season, 4 million to 5 million will be free of thimerosal. The preservative-free vaccine will cost about $4 more per shot.


Thimerosal contains about 50 percent ethyl mercury. The organic mercury compound is less understood than its chemical cousin, methyl mercury, an environmental contaminant that can build up in fish. The government recommends that pregnant women avoid certain fish, because high mercury levels can cause neurological damage to a developing fetus.


The CDC maintains that ethyl mercury does not accumulate in the body and is less toxic than methyl mercury. And they cite a recent Institute of Medicine report which evaluated five large epidemiological studies and concluded that vaccines do not cause autism.

Skeptics argue that the large-scale studies could not have spotted a subset of children genetically vulnerable to the effects of vaccines. "I don't know if anyone has addressed the right questions or even formulated the right questions," said Pessah, the MIND Institute toxicologist and director of the UC Davis Center for Children's Environmental Health and Disease Prevention.


He argues that many genes are involved in autism, and many different environmental toxicants may play a role in the development and severity of the disorder. And while one person easily might handle exposure to a certain dose of mercury, he said, another might be injured as a result. As the research - and debate - continue, local scientists will be watching the caseload in California as the state's youngest children grow up without routine exposure to vaccines containing thimerosal.

Although it is too early to draw conclusions, many parent advocates have noted that the rate of increase in new cases dropped for the past three quarters for the first time in 35 years.
"This has occurred approximately three years after the drug companies stopped using thimerosal," said Kaminski. "Most children are diagnosed at about age 3. Is it just some amazing coincidence? I doubt it."

"Your Next Patient Has Autism" – Informational Brochures for Doctors

"Your Next Patient Has Autism" is a tri-fold brochure developed for the many health professionals – nurses, physicians, technicians and others – who provide services for children on the autistic spectrum. It is especially designed for those who only occasionally treat this population. Physical assessment, diagnostic imaging and a variety of other interventions – both invasive and "non-invasive" – may induce extreme fear and anxiety in autistic children.

Their behavioral responses to such experiences often interfere with needed care, and increase the risk of physical and/or psychic trauma. This brochure provides caregivers with a brief synopsis of autism together with specific recommendation for managing the special needs of these patients in the context of in-patient or out-patient healthcare. It was put together by the North Shore Long Island Jewish Health System. For folks looking for some information to pass on to doctors this is a pretty good model.

Brochure with information for Doctors:

http://www.northshorelij.com/body.cfm?id=2536&oTopID=2536&PLinkID=159

or http://www.northshorelij.com/body.cfm?id=159 , press "Your Next Patient Has Autism" title in blue on the left side of page.

Introducing Your Child’s Class to Autism

Perhaps your child is the first or only child in his class with an Autism Spectrum Disorder. Below is a list of books that explain autism/disabilities in a way that children can understand. Your child’s teacher might be willing to read a book to the class.

These books for children are all available in our Chapter Lending Library at Families Helping Families:

"Andy and His Yellow Frisbee" by Mary Thompson

"Captain Tommy" by Abby Messner

"I Love My Brother" by Connor Sullivan

"Ians Walk: A Story About Autism" by Laurie Lears

"I Wish I Could Fly Like a Bird" by Katherine Denison

" Joey and Sam" by Ilana Katz

"Little Rain Man" by Karen L. Simmons

"Mori’s Story: A Book about a Boy with Autism" by Zachary Gertenberg

"My Brother Matthew" by Mary Thompson

"Talking to Angels" by Esther Watson

"Trevor, Trevor" by Dianne Twatchman-Cullin

"Kristy and the Secret of Susan" by Ann M. Martin

You may also want to provide the teacher an information sheet on autism, geared towards kids that they can go over with their kids:

WHAT IS AUTISM?

When a person has autism, it means that something in their brain is different from other peoples’ brains. This causes them to act differently than other people.

People with autism sometimes have trouble understanding what other people are saying. They can have a hard time using words to say what they need, and they might end up saying the same word or sentence over and over.

Children with autism might play in a different way than other kids. They may like to stare at something for a long time or maybe twirl a piece of string or spin a toy car around and around. A lot of times they may play by themselves because they don’t know how to play with other kids.

Some kids with autism might be happy, but all of a sudden they will become sad or mad and might even have a tantrum. It might be because they can’t tell people what they need or want.

WHAT ARE PEOPLE WITH AUTISM LIKE WHEN THEY GROW UP?

Lots of people with autism can learn to do all sorts of things when they grow up. They might have a job at a grocery store or as an artist or even working on a computer. Even though autism never goes away, many people with autism learn to make friends, do a job and have a very happy life.

HOW SHOULD I ACT AROUND SOMEONE WITH AUTISM?

Just remember that people with autism aren’t that much different from you. Just like you, they can do some things better than others. Just like you, they have lots of different feelings. They might feel happy, sad, excited, frustrated, proud, lonely, or loving – just like you. It’s important to know that even if someone with autism acts different from you or your friends, they still have feelings and they care about other people. You should always try to be a caring person too! So just be yourself when you’re with someone who has autism. You may even make a new friend!

What if you and the teacher composed a letter to be sent home to parents of classmates, explaining that there is a special needs child in the classroom and what autism is (and isn't)? Include some of your child’s wonderful qualities (i.e., loves to laugh, world's best block builder), and suggest to parents that if they haven't discussed differences and tolerance with their children that this might be a great time to do it.

Testing Baby Teeth for Mercury

From an online parent: We had 3 of our son's baby teeth tested at MMET, Inc. The cost was $40.00 per tooth and their service was both friendly and prompt. Here is all of the contact information in case you or others might be interested:

MMET, Inc. (Middleton Microbiological & Environmental Testing Laboratory), 3889 N. 20th (Hwy 65), Ozark, MO 65721. 417-581-6638 or Toll Free 877-581-6638, Fax 417-582-0269 email: mmetinc@classicnet.net Jeff Harmon, Inorganic Chemist

What are your Rights, as a Parent, in the Special Education Process?

The complete information regarding your rights/procedural safeguards is lengthy and detailed, listed below are the "highlights". Be sure to request and read a complete copy of your rights from your local school district.

You have the right to:

PARTICIPATE in the educational decision-making process.

Receive a Free Appropriate Public Education for Your Child. FREE means at no cost to you, APPROPRIATE means meeting the unique educational needs of your child.

REQUEST AN EVALUATION if you think your child needs special education or related services.

BE NOTIFIED whenever the school wants to evaluate your child, change your child's educational placement, or refuse your request for an evaluation or a change in placement.

Offer VOLUNTARY INFORMED CONSENT. That means you understand and agree in writing to the evaluation and educational program decisions for your child. Your consent is voluntary and may be withdrawn at any time.

Obtain an INDEPENDENT EVALUATION if you disagree with the school's evaluation.

Request a REEVALUATION if you think your child's present educational placement is no longer appropriate. (The school must reevaluate your child at least once every three years, but your child's educational program must be reviewed at least once during each calendar year.

Have your child tested in the LANGUAGE he or she knows best. For example, if your child's primary language is Spanish, this is the language in which he or she, must be tested. Students who are deaf have the right to an interpreter during the testing.

REVIEW all of your child's school records. You may request copies of these records, but the school may charge you a reasonable fee for making the copies. Only you, as parents, and those persons directly involved in the education of your child will be permitted access to personal records. If you feel that some information in your child's record is inaccurate or misleading or violates the privacy or other rights of your child, you may request that the information be changed. If the school refuses your request, you have the right to request a hearing in order to challenge the questionable information in your child's records or you may file a complaint with your state education agency.

Be FULLY INFORMED by the school of all rights that are provided to you under the law.

PARTICIPATE in the development of your child's individualized education program (IEP) or individualized family service plan (IFSP), if your child is under school age. The school must make every possible effort to notify you of the IEP or IFSP meeting and then arrange it at a time and place that is convenient for both you and the school personnel.

PARTICIPATE in all IEP or IFSP team decisions, including placement.

REQUEST an IEP or IFSP meeting at any time during the school year.

Be KEPT INFORMED about your child's progress at least as often as parents of children who do not have disabilities.

Have your child educated in the LEAST RESTRICTIVE ENVIRONMENT possible. Every effort should be made to develop an educational program that provides your child with the services and supports needed in order to be taught with children who do not have disabilities.

► Voluntary MEDIATION or a DUE PROCESS HEARING to resolve differences with the school that can not be resolved informally. Be sure you make your request in writing, date your request, and keep a copy.

The Autism Clock

Take a look at the Autism Clock.

http://www.fightingautism.org/clock/index.php

U.S. Autism Population Estimate

09/20/2004 10:29 PM PST

( ages 3-22 ) -177,969 cases and counting

U.S. Annual Economic Cost

$5,339,081,670 and counting

Next Diagnosis 14.06 mins

[DOES NOT include those less than 3 years or older than 21]

New Library Resources

The following videos have been added to our lending library at Families Helping Families (318-361-0487):

Autism & Law Enforcement Roll Call Briefing Video (2004 by Dennis Debbaudt Video 135 20 min. (FHF) This ground-breaking video features 15 children and adults at various points on the autism spectrum, an actor who has autism, actual 911 calls, and reflects American diversity. It has the look and feel of a TV news documentary, uses real life events to punctuate these issues, and on-the-job officers to deliver the message. The video merges documentary techniques and vignettes to explore and explain critical issues for first responders, including: sensory over-stimulation; wandering; communications and behaviors; responding to the call; restraint and arrest; interview; constitutional rights; and street crime. With guidance from professional law enforcement and first response advisors, this video offers tips and options for communications and responses designed to successfully resolve a call involving a person with autism. The use of state-of-the-art editing and graphics, a creative and informative script, and action make this video the perfect autism training tool for law enforcement.

For Safekeeping (2004) 20 min Video 348B (FHF) This video demonstrates how to recognize, safely approach and communicate with individuals with autism. The program was developed by the Autism Alliance in cooperation with a nationally recognized autism expert and an active member of the Massachusetts police force. Successfully used to train police, fire and other emergency personnel throughout Massachusetts, this video is ideal for educating hospital, school and church groups in any community. The program is hosted by Doug Flutie and features children and young adults with autism.

Hear the Silence (Dec. 2003) UK TV Drama Video 365 (FHF) Hear the Silence is Channel 5's dramatization of the case that the measles, mumps, and rubella (MMR) vaccine causes autism. It tells the story of Gastroenterologist Andrew Wakefield, whose 1998 paper ( Lancet 1998;351:637 [CrossRef] [ISI] [Medline]) first led to claims of a link between MMR and autism. Wakefield is played by actor Hugh Bonneville. We see him introduce himself as the caring, listening doctor to Nicky (Jamie Martin), a little boy with autism, and his mother, Christine (Juliet Stevenson). "Hello, I'm Andy," he says. At his positive response to Christine's conviction that MMR caused her son's bowel problems and his autism, she bursts into tears. "You believe me?" she says between sobs of joy and incredulity that she has at last found a doctor who endorses her claims. "Why wouldn't I believe you?" asks Dr Wakefield. In her fight for justice, heroic Christine loses her high-flying banking job and her aloof businessman husband, but not—her sultry good looks. The medical professionals she encounters (apart from Andy) are unsympathetic, pompous, and patronizing. Dr Wakefield's critics at the Royal Free Hospital, London, and the Department of Health are cynical and scheming, concerned about their own careers or influenced by the vaccine manufacturers. Dr Wakefield is a crusader for truth, a committed scientist, a conscientious physician, and a devoted family man. [Anticipating criticism of the decision to broadcast this account of the MMR controversy, Channel 5 organized a debate to follow on after Hear the Silence.]

Miracle Run (2004) Video 528 (FHF) Mari-Louise Parker and Aidan Quinn star in this Lifetime Original Movie about a mom who doesn’t know how to quit when it comes to helping her autistic twin boys reach for the stars. When Corrine Morgan-Thomas’ autistic twins, Steven & Phillip turned six, doctors said it was likely that her sons would need to be institutionalized by the age of nine. But their mom just said no! Over the ensuing years, she struggled for her kids to be accepted, battling their school district to keep them in the mainstream school. The boys have gone on to accomplish things on one ever believed they could.

My Life as an Autistic Boy (2003) by Kyle Priebe Video 530 19 min. (FHF) "Its all about me and what its like to have Autism. There are good things about Autism, and things that are confusing, and I talk about them in my movie. I tell the story of my life from preschool to high school, my struggles to learn and make friends, and my successes." Winner of the Temple Grandin Award from Future Horizons.

Mercury: Winged Messenger

http://www.prweb.com/releases/2004/9/prwebxml156196.php

AUTISM - A POLITICAL BOMBSHELL " NO CHILD LEFT BEHIND"? President Bush unwilling to address this National Tragedy. Parents are outraged.

Autism has hit epidemic levels with no end in sight. The President has failed to address this National Tragedy....WHY ? There are 25 facts that will leave the American people asking questions. New Book Titled, Mercury: The Winged Messenger presents these 25 facts and others... Seattle, WA (PRWEB) September 13, 2004 -- THE TWENTY-FIVE FACTS PRESENTED IN THE BOOK TITLED: MERCURY: THE WINGED MESSENGER.

Fact # 1 Mercury is one of the most poisonous substances known to medical science.

Fact # 2 Thimerosal, is a chemical that was used as a preservative in children's vaccines that was intentionally added to the vaccines to increase profits by way of multi dose bottles that were given to millions of our children.

Fact # 3 Thimerosal is 49.6% MERCURY, a proven and deadly neuro-toxin that causes permanent brain damage. The Material Safety Data Sheet (M.S.D.S.) confirms toxicity fears.

Fact # 4 Hundreds of Thousands of children received as much as 40 times the safe level for mercury exposure as established by the Environmental Protection Agency ( E.P.A.) from the thimerosal that was used in the vaccines.

Fact # 5 The pharmaceutical industry stocks exploded in value from 1986 to 1999. This was the direct result of federal mandates requiring vaccines for all school children.

Fact # 6 There has been over 700 waivers of the conflict of interest rule by the F.D.A., C.D.C., and the N.I.H regarding paid consultancy from the drug industry. Congressman Dan Burton of Indiana has called this a "VIOLATION OF THE PUBLICS TRUST".

Fact # 7 Former President Bush (41) was appointed to the Eli Lilly board of directors and lobbied for additional tax breaks until the Supreme Court itself told him to stop.

Fact # 8 Former Vice President Quayle's family controlled Eli Lilly during that time frame. As a result of Bush's appointment to the Eli Lilly Board of Directors, it is suspected that Dan Quayle was selected as the Vice Presidential Candidate.

Fact # 9 Present and former Eli Lilly executives are now employed with the current Bush Administration.

Fact # 10 The Current Administration has tried to insert an eleventh hour Eli Lilly Rider provision in the Homeland Security Bill, that illegally protected the drug industry at the expense of thousands of mercury poisoned children.

Fact # 11 The current administration tried to "SEAL" CDC documents that proved the danger to children from the thimerosal additive used in the vaccines.

Fact # 12 The CDC tried to bury documented reports on thimerosal. They deliberately marked public documents with the phrase "DO NOT COPY OR RELEASE" This violated most consumer protection laws.

Fact # 13 The drug industry has paid consultants that tried to disprove the relationship between autism and mercury poisoning from the multi doses of thimerosal that was given to our children.

Fact # 14 The symptoms of mercury poisoning and that of autism are IDENTICAL.

Fact # 15 The onset of "Autism" has exploded in the last 15 years to epidemic levels.

Fact # 16 This onset occurred when the multi dose vaccines containing the thimerosal was given to our children on multiple occasions during the first two years of a child’s life.

Fact # 17 The U.S. Government and state governments require ALL children to have 21 mandated vaccines before being admitted to schools. Most of these vaccines contained the Thimerosal / Mercury up to the year 2001. The current flu vaccine still contains thimerosal.

Fact # 18 The pet vaccine industry took thimerosal out of pet vaccines over ten years ago because of known risks to animals.

Fact # 19 Eli Lilly Company distorted information on the dangers of thimerosal as early as 1930. This has been proven by internal Eli Lilly documents and Congressional investigations by Congressman Burton's committee on Government Reform.

Fact # 20 The U.S. Government has a three year statute of limitation vaccine court of law, that has illegally protected the drug industry by way of violating the U.S. Constitution. This court has and will dismiss law suits because of this illegal three year statute...This in essence is obstruction of justice and violates the Constitutional rights of these vaccine injured children.

Fact # 21 Eli Lilly and other drug giants have contributed large sums of money to the Republican political process.

Fact # 22 The drug industry never disclosed that their baby vaccine products contained this dangerous mercury additive. Parents were never warned or notified.

Fact # 23 Congressman Burton of Indiana has proposed bringing criminal charges against those who are responsible for this national tragedy.

Fact # 24 There have been over 120,000 documented cases of "AUTISM" - Mercury poisoning to our children. Another 250,000 cases are suspected.

These children will require care and support for the rest of their lives. The costs to the parents will exceed $ 2 million dollars per injured child. These are crimes against humanity. Children's lives have been destroyed.

Fact # 25 Majority leader Bill Frist has proposed a new law that again illegally protects the pharmaceutical industry by way of violating the Constitutional Rights of over 120,000 vaccine injured children. Title ll of this proposed law is an atrocity. The rights of these children and that of their parents MUST BE PROTECTED AT ALL COSTS.

These 25 facts and others are presented in detail in the Book Titled, MERCURY: THE WINGED MESSENGER...A MUST READ BOOK FOR EVERY PARENT. [In our Library!]

The American people deserve the TRUTH! To buy the book

http://www.nccn.net/~wwithin/bookstor.htm#vaccine

Dan Marino Foundation Launches First Web Channel for Autism

www.childnett.tv
1 September 2004


The Dan Marino Foundation has recently launched Childnett.tv, the first 24-hour web channel dedicated to families living with autism and other neurological disorders.


Childnett.tv is an internet access web channel that broadcasts interactive programming 24 hours a day, seven days week via the internet. The lineup includes streaming video related to autism and other neurological disorders. The mission of Childnett.tv is to reach out globally to families, clinicians and educators, connecting them through the internet, to information related to autism and other neurological disorders.


NAAR and the Dan Marino Foundation recently co-produced a new program on Childnett.tv featuring Dr. Lonnie Zwaigenbaum, of McMaster University in Hamilton, Ontario. The program focuses on early detection of autism and Dr. Zwaigenbaum's infant sibling research, which is supported by NAAR and the Dan Marino Foundation.

To view the program, or check out the many other informative programs on
www.Childnett.tv , click here to register and view the Childnett Web TV Guide.


In addition to Dr. Zwaigenbaum, Childnett.tv currently features other NAAR-funded researchers such as Dr. Isabel Rapin, of Albert Einstein College of Medicine and Dr. Wendy Stone, of Vanderbilt University, who each serve as mentors to NAAR fellows. Also, former Scientific Advisory Board member Roberto Tuchman hosts a program on the web channel, as do NAAR
Honorary Board members Temple Grandin and, of course, Dan Marino. In addition, NAAR Trustee Dr. Michael Alessandri serves as clinical advisor to Childnett.tv.


On Childnett.tv, families, clinicians and educators can witness the latest therapies and treatments, seminars, as well as personal stories-all for free. The Dan Marino Foundation is funding this dynamic initiative to improve the lives of families around the world. It is the Foundation's hope the information broadcast on the website will help ensure every child with
developmental disabilities reaches his or her highest potential.

MMR AND AUTISM:  The link really has been established


A new study has confirmed a definite causal link between the MMR (measles, mumps, rubella) vaccine and autism - and it has used the same data employed by an earlier study that governments have relied on to deny the link.


The vaccine increases the risk of autism by 850 per cent, or nearly 500 per cent if we allow for greater diagnostic awareness, one of the major arguments put forward for the sudden increase in autism. 


This conclusion contradicts that of the Madsen study carried out in 2002, which found no link, and which governments have gratefully clung to ever since.


So why the enormous discrepancy between the two trials?  Autism is usually diagnosed only at age 5 or older, or it is in Denmark from where the data for both studies has been gleaned.  The Madsen study monitored the progress of vaccinated children in Denmark only for four years, so it's hardly surprising that few, if any, cases of autism were established.  Less severe cases, which might have become apparent even later, were certainly not included in the findings.


The new study, carried out by American pediatrician Dr Fouad Yazbak and Dr G S Goldman, tracks levels of autism in Denmark from 1980 - seven years before the MMR vaccine was introduced in Denmark - until 2002.  Prevalence of autism among children aged from 5 to 9 stood at 8.38 cases per 100,000 in the pre-vaccine years of 1980 to 1986, and then rose to 71.43 cases by the year 2000. 


Dr Samy Suissa of McGill University had similar problems with the Madsen study.  When he analyzed the statistics he discovered that the rate of autism increases to a high of 27.3 cases per 100,000 two years after vaccination compared with just 1.45 cases in non-vaccinated children.


No doubt in the spirit of the public's right to know, government officials will be broadcasting the latest findings as loudly as they did the Madsen conclusions.  Strangely, they have been silent thus far.


(Sources:  Journal of American Physicians and Surgeons, 2004; 3: 70-5; New England Journal of Medicine, 2002; 347: 1477-82).

 

Angels for Autism!

Our sincere thanks to the following Angels for Autism who have made donations to our chapter. Your generous financial support permits us to continue to help families living with an Autism Spectrum Disorder. Please know that we take this responsibility very seriously and will strive to be worthy of your faith and support. Thanks a million!

Bill and Tommie Lee

The Family of Cecil Arant

Mr. & Mrs. Bob Jackson

Moms Club of Monroe LA

American Contract Bridge League Unit 211

Imagine…
~ Nicole Lannyk, nconnor@nlg.com, mother of James, 4yrs old

Imagine
No I-love-yous…
No family picnics, parades, or weddings…
No friends or playmates…
No common sense…

Imagine…
A 4yr old that doesn’t understand what
Will happen if he runs in front of a car
Or jumps into a pool…
Imagine a home looking like Ft. Knox
Just to keep your child safe….

Imagine…
Being told your child has a neurological brain disorder
And maybe never be able to speak, function in society,
Live alone, marry or have children, your heart sinks…

Imagine…
After waking your child in the morning, if you don’t do
Everything in the same order as the day before, at the
Precise moment it’s enough to ruin their entire day…

Imagine…
Watching your child on the first day of school stepping
Into the handicapped bus…

Imagine…
Having your home invaded with teachers, therapists,
State reps, child psychologists for 35hrs per week of intense
1 on 1 therapy in hopes of a better life someday…

Imagine…
Watching the agony on your child’s face giving you the
"Mommy why are you letting them do this to me" look while
Doing numerous EEG’s, blood work, x-rays, and testing to
Figure out how to help them feel better…

Imagine…
Just how many "your kids a brat" stares you get in public
Simply because your child cannot handle social situations
Including a simple trip to the grocery store…

Imagine…
What autistic children, parents and families go through
On a daily basis…

Helpful Websites

IEP site – Excellent for anyone working on an IEP

http://www.nclid.unco.edu/HVoriginals/Advocacy/Popup/popup.html

Autism Alarm flyer (click on "Fact Sheet"

http://www.medicalhomeinfo.org/screening/autism.html

Autism Education Network

http://www.autismeducation.net/

Chapter Products Available

"Brie" bears - This precious golden yellow bean bear sports an embroidered autism ribbon on her chest! She was created to honor those affected by autism. Brie Bears are available at each chapter support group meeting (2nd Sunday of each month) for $10. To order by mail, please send your check, made payable to NE LA ASA, for $12 (includes $2 shipping cost) to our chapter address.

Autism Awareness Cards - If your child has ever experienced a "meltdown" in a public place, you vividly recall the stress caused by the reactions of strangers who happen to be nearby. Some of their faces silently asked: "Why can't you control your child?" Or "What kind of a parent are you?" You can carry these Autism information cards with you and distribute them to those folks who just don't seem to understand. Carry several with you in your wallet or purse! The cards are available for purchase at our monthly support group meetings. We sell them for our cost – 15 cents/card. (20 cents/card if mailed; 10 cards mailed to you for $2) The cards (which fold to the size of a business card) have the brightly colored puzzle ribbon on the front. Mail orders can be sent to the chapter address: NE LA ASA, P.O. Box 4762, Monroe, LA 71211. Please specify number of cards and include your check made payable to NE LA ASA. Perhaps you would consider including a donation to support our work? J

Emergency Alert Window Decals - In an emergency, helpers may not understand our children. These decals, placed on the windows of your home and your vehicle(s) will immediately alert First Responders that a person with autism may be inside. We are making them available to you at our cost, $1/decal. Pick up several at our meetings or send your request to the chapter address.

Food For Thought Cookbook - Accurate, helpful information on autism - in a unique and easy-to-share format! Over 400 palate-tempting recipes and 175 short informational paragraphs about autism! A good way to get basic information about autism into the hands of others. A great gift idea for friends, grandparents, teachers and neighbors! Price - $18 (+$2, if mailed)

Daily Autism News via E-mail!

If you would like to receive the latest information on autism daily, send your e-mail request to oh_mom@yahoo.com

LSAC Administrative Assistant

Julie Bourgeois is our Louisiana State Autism Chapter Administrative Assistant. Julie can be reached at (800) 955-3760 or you may e-mail her at jabou@bellsouth.net.

( The generous support of the NORTHEAST LOUISIANA STREET RODS, enables us to do many things, including provide child care for chapter events at no cost to parents.

 

( A Special Thanks to Families Helping Families for making the hundreds of copies of our newsletter!

 

( Our sincere thanks to the ULM R.S.V.P. (Retired Seniors Volunteer Program) for collating and labeling our newsletters!

 

IF YOU DO NOT WISH TO RECEIVE OUR NEWSLETTER, PLEASE CALL FAMILIES HELPING FAMILIES AT 361-0487 AND ASK THAT YOUR NAME IS REMOVED FROM OUR MAILING LIST. MANY THANKS!

 

 

 

F Have questions? Call any chapter officer or LSAC board member.

Chapter Executive Board:

President, Anna Keith Foy

LSAC Board

318-649-7449 (home)

Vice-President, Barbara Cook

LSAC Board

387-9356 (home)

397-0086 (work)

Recording Secretary, Pat Evans

322-2841 (home)

388-3737 (work)

Corresponding Secretary

Newsletter Editor, Lynda Huggins

343-7698 (home)

342-1059 (work)

Treasurer, Dr. John Carr

LSAC Board

397-9180 (home)

342-1796 (work)

 

Exec Bd At-Large, Tina Roush

Seminar Chairman

396-5069 (home)

Social Chairman, Dianne Hilburn

322-1817 (home)

LSAC Board, Jim Huggins

318-343-7698 (home)

Chapter WebMaster, Dr. Levelle Haynes

343-3782

Dates to Remember!

à Second Sunday of Each Month- Support Group Meeting, Families Helping Families, 2:00 p.m. (unless another chapter event is planned during the month) Child care provided, refreshments served, call 361-0487 for directions

à October 21-22, 2004- Autism/

Asperger’s 2004, Austin Texas

à October 26-27, 2004- All About Autism Conference, Shreveport– Practical Ideas for Educators

Tell your child’s teacher!

à November 6-7, 2004 – MiniDAN! Conference – Nov. 6-7, Auburn, Alabama

à November 11-12, 2005- Louisiana State Autism Conference, Monroe!

 

 

 

Tear off this page and put it on your refrigerator! Keep these numbers handy and don't miss a single opportunity to become more involved!!!