Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 SAR " Healing Autism: Schafer Autism Report No Finer a Cause on the Planet " ________________________________________________________________ Tuesday, August 8, 2006 Vol. 10 No. 139 PUBLISHING NOTE: Publication this week of the Schafer Autism Report may be spotty. I will be attending the USAAA conference in Utah from Wednesday to Sunday. Any " breaking news " of significance will be reported nonetheless. Otherwise, all important information regarding autism will be reprinted here eventually. Come visit me at the SAR booth and the A-CHAMP booth. (There was no Monday edition.) - Lenny Schafer. RESEARCH * Ultrasounds May Harm Brain * Families Needed for CAN Research Studies CARE * Bridging the Gap Between Dads And Their Kids With Autism * 'Well Child' Visits Revisited * Missing Southern CA Autistic Child Sparks Multiagency Search ADVOCACY * A-CHAMP Call To Political Action For August * Court warning for Red Arrows MEDIA * " Autism Every Day " To Be Featured on ABC's " Good Morning America " * Request for Parent and Professional Reviewers COMMENTARY * Brit Researchers: No Male Children For Families With Autism History LETTERS >> PROMOTE YOUR FALL EVENTS NOW - FREE << Conferences * Presentations * Parent Meetings DEADLINE FOR SEPTEMBER SAR AUTISM CALENDAR IS AUGUST 25! Submit listing here: http://www.sarnet.org/frm/cal-frm.htm RESEARCH Ultrasounds May Harm Brain A new study reports scans reduce fetal nerve cell development, may cause some disorders. By Randolph E. Schmid for Associated Press http://tinyurl.com/lzo9l Exposure to ultrasound can affect fetal brain development, a study suggests. But researchers say the findings, in mice, should not discourage pregnant women from having ultrasound scans for medical reasons. When pregnant mice were exposed to ultrasound, a small number of nerve cells in the developing brains of their fetuses failed to extend correctly in the cerebral cortex. " Our study in mice does not mean that use of ultrasound on human fetuses for appropriate diagnostic and medical purposes should be abandoned, " said lead researcher Pasko Rakic, chairman of the neurobiology department at Yale University School of Medicine. However, he added in a phone interview, women should avoid unnecessary ultrasound scans until more research has been done. Dr. Copel, president-elect of the American Institute of Ultrasound Medicine, said his organization tries to discourage " entertainment " ultrasound, but considers sonograms important when there is a medical benefit. " Anytime we're doing an ultrasound we have to think of risk versus benefit. What clinical question are we trying to answer? " Copel said in an interview. " It may be very important to know the exact dating of pregnancy, it's certainly helpful to know the anatomy of the fetus, but we shouldn't be holding a transducer on mom's abdomen for hours and hours and hours. " Rakic's paper said that while the effects of ultrasound in human brain development are not yet known, there are disorders thought to be the result of misplacement of brain cells during their development. " These disorders range from mental retardation and childhood epilepsy to developmental dyslexia, autism spectrum disorders and schizophrenia, " the researchers said. Their report is in today's edition of Proceedings of the National Academy of Sciences. The paper noted that the developmental period of brain cells is much longer in humans than in mice, so that exposure would be a smaller percentage of their developmental period. However, it also pointed out that brain cell development in people is more complex and there are more cells developing, which could increase the chances of some going astray. -- > DO SOMETHING ABOUT AUTISM NOW < -- SUBSCRIBE. . . ! . . .Read, then Forward the Schafer Autism Report. To Subscribe http://www.SARnet.org/ $35 for 1 year - 200 issues, or No Cost Review Sub.! .. . . Families Needed for CAN Research Studies You Can Participate! By nne Toedtman R.N., M.N., Cure Autism Now, National Resource Manager Families Move Autism Research Forward Without research, new knowledge and advanced treatments are not possible. However, without family participation, autism research would progress at a much slower pace. Families are a vital link to accelerating the pace of autism research. For years, Cure Autism Now has been a leader in family recruitment through its Autism Genetic Resource Exchange (AGRE). While CAN has excelled at AGRE's recruitment - families with two or more children diagnosed with Autism Spectrum Disorder - many other families have had limited information about the latest research studies and how to participate. Recognizing this need for family information, CAN has developed a Clinical Trial/Research Studies Web Listing service. Central to this effort is providing information to help families with autism learn about the latest studies and make informed decisions about participating in autism research. This service lists new and on-going clinical trials/research studies throughout the world. Each listing provides key information about the study including a description of the study, criteria for participation and direct contact information with the study's coordinator and principal investigators. Importantly, we have tried to make the research descriptions detailed enough that you will understand the scientific rationale behind the study and be able to ask the coordinators informed questions. Cure Autism Now Web Based Clinical Trial/Research Studies Listing This is an opportunity for families to make a significant contribution to scientific research. By participating in research, you help to expand the knowledge base of autism and other neurodevelopmental disorders. This information helps researchers to understand causes, develop better treatments and ultimately, identify a cure. At the same time, it will allow us to help our affected family members sooner. We invite you to regularly visit www.cureautismnow.org/familyparticipation for updates and information about new research in your area. Note: Numerous other autism-related research studies looking for participants can also be found in the Readers' Posts section of the SAR Calendar of Events: http://www.sarnet.org/events/index.htm#RP -ed. .. . . CARE Bridging the Gap Between Dads And Their Kids With Autism http://www.wndu.com/news/mommo/082006/mommo_51916.php One and a half million people, both children and adults, are living with autism; often times, care and education become the mother's responsibility, however, some doctors think dads may hold the key to helping these kids One and a half million people, both children and adults, are living with autism; often times, care and education become the mother's responsibility, however, some doctors think dads may hold the key to helping these kids One and a half million people, both children and adults, are living with autism. Often times, care and education become the mother's responsibility. However, some doctors think dads may hold the key to helping these kids. was diagnosed with autism when he was three and his dad found it very frustrating. Dads like to be in control and it doesn't work with these special children. " There is a tendency to really direct the children, but what we found is that doesn't work very well in autism. It's much better to follow the child's lead, " explains Elder, M.D. of the University of Florida. Doctor Elder says to teach your children how to take turns. That's critical for language development. But don't focus on the disorder. Autistic children need to play with you like any other kid. Her research shows a dad's involvement improved communication and increased the number of understandable words by 50 percent. .. . . 'Well Child' Visits Revisited Pediatricians are busy. Parents are, too. So fitting one more thing into a " well child " visit - in addition to the weighing, measuring, poking and prodding - is tough. www.usatoday.com/news/health/yourhealth/2006-08-06-your-health_x.htm But when that one thing is assessing an infant's or toddler's development - all the outward signs that his brain, mind and body are working together as they should - it's worthwhile. That's because catching the early signs of problems ranging from mild speech delays to mental retardation can make a huge difference in the lives of children and families. " We just know that if we get kids in early, they do so much better, " says Frances Glascoe, an adjunct professor of pediatrics at Vanderbilt University in Nashville. The problem: making routine developmental screening happen in a world where a well-child visit lasts less than 15 minutes and insurers don't pay doctors to indulge in long chats with worried parents. The American Academy of Pediatrics published its latest policy in July. It calls for pediatricians to: .Ask parents questions about their children's development and look for signs of trouble at every well-child visit up to age 3. .Use formal, proven developmental screening tests at 9 months, 18 months and again at either 24 or 30 months (the group favors the later check but says children aren't always seen at that age). .Screen every child for autism at 18 months (a first-time call for formal autism screening). .Offer additional, formal screening any time a parent or doctor becomes concerned about a child. .Refer children who fail screening tests to public early-intervention programs and to specialists who can evaluate the child fully, both for developmental disorders and related medical problems. The mix of periodic formal screening, less formal checks in between and prompt responses to parents' concerns should work for time-pressed doctors but minimize chances that children in trouble will go months or years without help, says Lipkin, director of the Center for Development and Learning at the Kennedy Krieger Institute in Baltimore and head of the panel that wrote the policy. " Once a parent expresses a concern around a child's development, that in and of itself is significant, " he says. " We'd like to get 'wait and see' taken out of the vocabulary of the well-child visit. " Wiseman of Merrimac, Mass., would like that, too. Doctors told her to " wait and see " when she first expressed concerns about her toddler daughter's poor language, communication and play skills - warning signs of an autism-related disorder that was diagnosed months later. Today, her daughter is 10 and doing well, but Wiseman says too many doctors still fail to respond when a child falls behind. " I'd like to see screening at every visit, " says Wiseman, founder of First Signs, which promotes early diagnosis and treatment of developmental disorders and author of Could It Be Autism? A Parent's Guide to the First Signs and Next Steps. (Full disclosure: I was a paid contributor to that book.) The warning signs of many disorders, including autism, can be seen in the first two years of life. Yet the federal Centers for Disease Control and Prevention says children with autism are diagnosed at an average age of 5. Meanwhile, about 2% of children under 3 are enrolled in federally mandated early-intervention programs for children with developmental delays, Glascoe says. But, she says, 8% likely qualify. Got a health or medical question? E-mail kpainter@.... Please include your name, city and daytime phone number. Selected questions will be answered in the paper. .. . . Missing Southern CA Autistic Child Sparks Multiagency Search By Hand for The Valley Chronicle http://www.thevalleychronicle.com/articles/2006/08/04/news/05nautistic.txt A 12-year-old boy with autism was missing in San Jacinto for several hours Tuesday after walking away from his Pansy Way home early in the morning. He was reported missing at 6:37 a.m. by his mother, who found his bed empty at 5:15 a.m., but tried to find him on her own before calling police. The young man was found by a pair of fire investigators from the Riverside County Fire Department at approximately 10:15 a.m. He was riding his scooter westbound on Ramona Expressway west of on Avenue. Sgt. Rick Zerkel of the San Jacinto Police Department said the search became a multiagency effort because there was no way of knowing where the youngster had gone nor how he planned to get there. Besides, the development in which he lives is so new it appeared on no maps. " We knew the Fire Department would have a tract map, " Zerkel said, " so we called them. " Officers set up a command post outside the boy's house and also called in the helicopter, a K-9, and citizen volunteers. " We called in the helicopter to check back yards and other places we could not see from the ground, " Zerkel said. The boy's mother said she had last seen her son sleeping in his bed at approximately 4:45 a.m. and discovered him missing half an hour later. Since the family had moved to the house only a week earlier, the boy did not know the neighborhood, Zerkel said, but his mother reported that he may have left on the scooter. " He got it in his head that he wanted to ride his scooter, " Zerkel said. " I think he thought he was going to Grandma's. " The fire investigators held the boy until officers could get to the scene, where his identity was verified. " He was a little scared, I think, " Zerkel said, " but the first officer on the scene had a piece of candy and that took care of it. " The boy was unharmed. Zerkel said the incident highlights the need for reporting persons missing as soon as possible, particularly those who suffer from mental difficulties. The sooner a report is received the sooner a search can start, he said. .. . . ADVOCACY A-CHAMP Call To Political Action For August Advancing For Our " We Are Everywhere... " Campaign From an A-CHAMP announcement. In this election year we have an opportunity to be to make our Representatives listen to us regarding the needs of our children. Congress is in recess for the month of August. Members of Congress usually meet with their constituents in their home District. Now is the time to schedule appointments with your representatives and when you meet, if possible, bring your child and other family members with you. Make the call now. You may need to fax a request. The more parents/grandparents scheduling appointments the better. Ten appointments with constituents who discuss their child's mercury-induced autism will make an impression. If your Representative is unavailable to meet with you ask to meet with the Chief of Staff, District Director or senior advisor. Get an email address for person with whom you will continue to communicate. To obtain contact information for your Congressional representatives go here: http://capwiz.com/a-champ/dbq/officials/ If your Representative cannot meet in August, ask for the first available date to meet at a later time. Request your representative's schedule or attend a publlic event when your Representative is speaking and approach your Congressman there. For general guidelines for communicating with your representatives and staff read the one page 'Tips for Talking with Legislators " prepared by professional lobbyist and A-CHAMP State Coordinator Cellini. You can download this document from our We Are Everywhere Political Action Campaign Web Pages by clicking HERE or pasting this url http://tinyurl.com/zwvza into your browser. What to bring to your meeting with your Congressional Representative: *MAKE your meeting PERSONAL, PROFESSIONAL AND PRACTICAL *Prepare a packet of information for your representative to review. Make sure your contact information is inside the fold of the packet binder. *Include the following (most of the referenced documents are available through links on the A-CHAMP web site HERE or at www.a-champ.org/weareeverywheredocuments.html): .Photograph of your child. Include your child's name and date of birth; .Your child's Mercury Chart (urine toxicology report showing how much mercury your child has excreted upon chelation challenge); .CDC/AAP Autism A.L.A.R.M. -Download from HERE or www.a-champ.org/weareeverywheredocuments.html; .Your state's autism (IDEA) statistics available by Download HERE or http://www.fightingautism.org/idea/autism-prevalence-report.php (Thank You " Fighting Autism " - Pittsburgh, Pa.); .Local news articles if you have them; .Printout of slides showing Lifetime Costs of Caring for a Disabled Child Download from HERE or www.a-champ.org/weareeverywheredocuments.html; .HR 5887 - " The Vaccine Safety Confidence Assurance Act of 2006 " Download from HERE or www.a-champ.org/weareeverywheredocuments.html; .H.R. 5940 - " The Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006 " - Download from HERE or www.a-champ.org/weareeverywheredocuments.html; .H.R. 881/S. 1422 The Mercury-Free Vaccines Act Download from HERE or www.a-champ.org/weareeverywheredocuments.html; .Full page newspaper ads by Generation Rescue Download from HERE or http://www.generationrescue.org/ (Thank you Generation Rescue) Talking Points: .You are the best advocate for your child. Briefly tell your representative how autism has affected your child, your family and your life. Don't spend a lot of time doing this, about 5 minutes, because your time is limited. There are limitations to what your representative can do to help you personally and you want to focus on what you want your representative to do and what he/she is capable of doing to help you and your child. .Ask your representative if they think they have done all that they could do to help autistic children and their families. .Then tell your Congressman/Senator what you want him/her to do for your child and our community. .These are the 'asks'. Tell your representative you want them to sign on as co-sponsor to: .Support HR 5887 - The Vaccine Safety Confidence Assurance Act of 2006 Sponsors: Weldon/Maloney .Support HR 5940 - The Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006 Sponsors: Maloney/Osborne .Support HR 881 / S. 1422 The Mercury-Free Vaccines Act .Try to get your representative to commit their support for these bills. If your representative has already signed on to The Mercury-Free Act, they are likely to support the other bills. To see if your representative is a co-sponsor on HR. 881 go HERE or http://thomas.loc.gov/cgi-bin/bdquery/z?d109:HR00881:@@@P .Currently there are no co-sponsors in the Senate for S. 1422 .If your representative is not listed as a supporter of HR. 881 (House bill) or S. 1422 (Senate bill) you can ask why they are not supporting this bill...we know they have been asked in the past. .Ask your representative if he or she thinks vaccines should be as safe as possible? If so, the Representative should support H.R. 5887. .Ask your representative if he or she thinks it is important to determine the truth about the role vaccines may or may not contribute to the increased rates of autism? If so, the Representative should be a cosponsor of H.R. 5940. .Ask your representative if he or she thinks children should be given mercury-containing vaccines? If not, they should be a co-sponsor of H.R. 881 or S. 1422. (You can remind them that both President Bush and Sen. Kerry supported the removal of mercury from vaccines in 2004) .Always be polite, passionate and respectful. Resist anger even if you feel it. It is unlikely you will get help from your representative if he/she feels they can't win your vote and you are against him/her from the get-go. .Finally, remind your representative that our community represents a big special interest voting block that often crosses party lines to support candidates who support our children. 1 in 175 children have been diagnosed with autism, 1 in 6 children with a learning and/or behavioral disorder is a national emergency. We want their support and our issues to be a priority. .For every child with mercury-induced autism there are parents, grandparents, aunts & uncles, cousins, friends, neighbors, teachers, bus drivers and baby sitters. Potentially dozens of votes for each child and millions of votes for members who show their support and interest in our children. .In conjunction with meeting or contacting your Representative on behalf of A-CHAMP we encourage you to participate as well in the National Autism Association's Putting a Facing on Autism Campaign. Please participate in NAA's web site at which NAA is asking you to post photos and comments about your meeting. You can go there by clicking HERE or at www.putafaceonautism.com. A-CHAMP and NAA stand for consistent substantive positions on most issues, with specific respect to the legislation outlined in this action alert message. A-CHAMP supports a united " autism " community for the benefit of our vaccine-injured children. After your meeting Let us Know How You Did by Sending an email message to info@.... You can continue to work with A-CHAMP as an A-CHAMP Advocate, a District Leader or as a State Coordinator. If you are interested contact Gilmore at yogilmore@... We Are Everywhere and we're not going away... Message Brought To You By A-CHAMP Advocates for Children's Health Affected by Mercury Poisoning See Our Action Alerts. Click the TAKE ACTION! button http://capwiz.com/a-champ/home/ www.a-champ.org/weareeverywhere.html www.a-champ.org BE A-CHAMP FOR CHILDREN! and check out www.caawatch.org (under construction) Combating Autism Act Watch - the Community's Watchdog .. . . Court warning for Red Arrows http://tinyurl.com/j8goq An autistic boy in Cyprus has been awarded some 430,000 euros (US $553,000) in damages after a court ruled that displays by the Red Arrows aerobatics team had caused the child great distress. In a ruling made public on Saturday, the court in Limassol (southern Greece) agreed with testimony from experts that the boy had suffered actual bodily harm because the Red Arrow jets regularly flew over his home. The renowned formation team spends several weeks every year training at the RAF base in Akrotiri. The family of andros Costaki sued the Cypriot government for " failure to protect its citizens " as under the law on the island, they could not file a case against a foreign state. The boy's lawyers argued that the sound of the jets was amplified for the child as he has sensitive hearing. .. . . MEDIA " Autism Every Day " To Be Featured on ABC's " Good Morning America " Tune-In Alert: " Autism Every Day " To Be Featured on ABC's " Good Morning America " at 8am on Tuesday August 8 Autism Speaks Senior Vice President Alison Singer and film producer Thierry are scheduled to appear on tommorrow's " Good Morning America " on ABC to discuss the powerful documentary " Autism Every Day. " In the film, a group of mothers -- including Singer -- frankly discuss the incredible challenges, frustrations and rewards they experience while raising a child with autism. Check local listings to find out when " Good Morning America " airs in your area. EVIDENCE OF HARM DISCUSSION LIST HEATS UP AS MERCURY LINK TO AUTISM QUESTION SPREADS >> PAPERBACK BOOK NOW OUT - CHECK AMAZON.COM An Evidence of Harm email discussion list has been created in response to the growing interest in the book and the issues it chronicles. Now almost 1,400 subscribers. Here is how to subscribe (no cost): EOHarm-subscribe .. . . Request for Parent and Professional Reviewers The Organization for Autism Research is nearing completion of A Guide for Transition to Adulthood, the 4th volume in the Life Journey through Autism series and we are seeking volunteer reviewers to assist us in the process. to that end, we are looking for volunteers to read the draft document and provide us feedback on accuracy, clarity, and readability of the information presented. Feedback is sought from parents, professionals, and individuals on the spectrum alike. If you are interested in helping us in this important project, please contact Gerhardt, OAR's President, at pgerhardt@... for more details and to obtain a review copy via email. .. . . COMMENTARY British Researchers: No Male Children For Families With History of Autism By White. http://www.lifesite.net/ldn/2006/aug/06080407.html Researchers at the University College Hospital London have applied for permission to begin using pre-implantation diagnosis (PGD) to screen IVF embryos for possible autism, even though there is no reliable test for the condition. Opting for what one commentator called a " close enough solution, " the reasoning goes that since 90% of autism sufferers are males [sic], the answer is to allow only embryonic girls to be implanted in families with a medical history of autism. This, they say, will allow families with autistic children " to have a daughter free from the condition. " Simone Aspis of the British Council of Disabled People pointed to the inherent eugenic principles behind the application. " Screening for autism would create a society where only perfection is valued. " In the brave new world of the researchers, it is reasonable to fear " that anyone who is different in any way will not be accepted, " Aspis said. Bioethicist Ben said, " If unborn children are being eliminated for a genetic disposition to autism, no one is safe . . . Today autism, tomorrow intelligence below 70 I.Q., the next day male pattern baldness. When will this madness stop? " US columnist Chuck Colson, writing in Townhall, and reported in the SAR last week, about the British Researchers' application for the PGD screening, quotes Business Week saying, " the social cost of accommodating [their] birth is increasingly being seen as exceeding [their] worth. " This rhetoric from Business Week of the " social costs " of allowing the unfit to live and reproduce is identical to that of the early 20th century eugenics movement, led by abortion and contraception zealots such as Planned Parenthood founder Margaret Sanger. Colson makes the point, " Oh my! This utilitarian view of life inevitably leads us exactly where the Nazis were creating a master race. Can't we see it? " See Colson's Article in Townhall: The eliminators http://www.townhall.com/columnists/ChuckColson/2006/08/03/th... .... " the social cost of accommodating [their] birth is increasingly being seen as exceeding [their] worth. " Brief comment: In the US, one does not need a reason to have a legal abortion. Logically then, happening to have a particular reason beyond convenience, like selecting for no autism, or blue eyes, or a football line-backer physique is irrelevant. It's ok to terminate a fetus, but somehow not ok to tweak for it? It is silly to accept the blank check right to legalized abortion, but then get offended by some people's unaesthetic application of that right. So far, laws banning doctor involvement in eugenic screening seem difficult to enforce. As long as abortion is legal -- and that seems unlikely to change soon, the proverbial eugenics genie is out of the bottle and prospects are indeed frightening -- and not just in regards to autism. -LS. .. . . LETTERS Regarding " The Eliminators: Eugenics by Default. " My son regressed starting when he was 15 months old, and was eventually diagnosed with autism. Through a lot of hard work, he is also, at five years old, significantly recovered. And I can't imagine this world without him in it. He's an inspiration to many people, and the thought of a child like this being aborted because of a genetic test is unbearable. To this degree, I agree with the author of this article. However. There is a camp out there that advocates against genetic research in autism, based on the arguments that it will lead to abortions. They're the anti-Cure Autism Now, anti-using the " cure " word crowd. To them, genetic research, or a " search for a cure " equates to " let's kill autistic babies. " The line must be drawn here. You cannot equate this to testing for Downs, because with Downs there is no environmental component. We know there is an environmental component to autism. Genetic research will lead us to determining what the environmental components are, so we can prevent exposure. Not prevent autistics. There will come a day when autism is detectable like phenylketonuria (see http://en.wikipedia.org/wiki/Phenylketonuria for a definition). A simple test at birth can now detect phenylketonuria, and when detected, a modified diet (elimination of exposure to the environmental component of this genetic disease) prevents the effect of this disease, mental retardation. When used ethically, genetic research is a good thing. - Riley San Clemente, CA Public Service Announcement to the Reader: AUTISM IS TREATABLE. Consult these sources: . Autism Research Institute http://tinyurl.com/ccxco . Generation Rescue http://www.generationrescue.org . UK - Autism Treatment Trust http://www.autismtrust.org.uk COPYRIGHT NOTICE: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request. Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each item. SUBSCRIBE to SAR: http://www.sarnet.org or mailto: subs@... _______________________________________________________________________ Lenny Schafer, editor@... The Schafer Autism Report is a non-profit corporation. _______________________________________________ SAReport mailing list SAReport@... 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