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Saturday, July 25, 2009 Reader Supported |
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 PUBLIC HEALTH Studies Show Increase In Autism Cases in Australia Gov't Considers Seven States For Mercury Site RESOURCES The Ultimate GPS Child Tracking Buyer's Guide RESEARCH Autism Not Tied To Bowel Movement Patterns Disorderly Genius: How Chaos Drives The Brain PEOPLE Care Level Query As An Autistic Teen Died After He Choked Cassandra Wilson's Story Is The Heart Of Obama's Push To Overhaul Healthcare Illinois Senior Doesn't Let Autism Slow Her Down Service Dog Gives Autistic Boy Chance At Normal Life EDUCATION Berkeley Students Find Bridge To College COMMENTARY Deborah Kotz of US News: Autism and Vaccines Is the Case Closed? What Really Causes Autism? Thousands of Parents Blame Vaccines LETTERS PUBLIC HEALTH Studies Show Increase In Autism Cases in Australia ABC, Australia is.gd/1KS6g Australian officials currently estimate that about one in 160 children are diagnosed with autism, but findings from two new studies suggest it is much more common. It is not clear whether autism itself is on the rise, or whether better diagnosis is inflating the figures. Jaidyn Sullivan was 18 months old when he was diagnosed with autism. His mother Toni says his lack of speech was the biggest clue. "He wasn't sort of engaging, he was just walking away and doing his own thing, and he did have quite major speech delay," she said. "A few little words that he had learned just drifted away and became nothing, [he] lost all his words, and even at home he wouldn't engage with my husband and I. "We thought he might have been partially deaf at first, because you'd walk up to him and clap your hands close to him and he'd turn around and respond, but then if you called his name whilst he was watching a TV program that he liked, he'd just completely ignore you." Researchers from Melbourne's La Trobe University studied 20,000 children as they grew from infants to toddlers. They trained baby health nurses to pick up early signs of autism. Dr Cheryl Dissanayake is one of the lead researchers. "So what we're finding from the SACS study is that one in 119 children are meeting criteria for an autism spectrum disorder at the age of two years," she said. "These data are in accordance with the data coming out of the UK." 'One in 100' Professor Margot Prior says a second independent study from the university found the figure was close to one in 100. "Well we had 19 autistic children in a sample of 1,900. So that's one in a 100. So again, we believe that the prevalence is certainly greater for whatever reason," she said. "And of course this is a population, you know, a non-clinical sample, just from the population out there." It is still unclear whether there are more cases of autism or whether doctors are just more aware of the condition and likely to pick it up. While a large study in the United States is looking at possible triggers in the environment, Dr Dissanayake says it is too early to tell what is behind the increase. "I do think that the jury is out still on this question. Certainly, we're picking up children much more broadly across the spectrum, which in the past we only picked up sort of the classic children, the children with autistic disorder," she said. "Now we are better at picking up children right across the spectrum of conditions and I certainly think that's adding to the increase in prevalence." She says children who are identified early go on to have the best outcomes. "The early identification and diagnosis has huge implications for the developmental outcome of these children. And we're seeing this in a very real way with our study, because now we're conducting the follow-up study," she said. Since his diagnosis, Jaidyn has had regular intensive speech therapy, which Toni says it has made a huge difference. "He's made huge progress. We've been doing fairly intense speech therapy with him, he's been doing private speech therapy since he was 18 or 20 months of age," she said. "And he's come a long way, he didn't have any language when he was two years of age, probably over the last 12 months his language has just progressed out of sight." DO SOMETHING ABOUT
AUTISM NOW
. . . Read, then Forward the Schafer Autism Report. $35 for 1 year - or free! www.sarnet.org • • • Gov't Considers Seven States For Mercury Site By Shannon Dininny, Associated Press. is.gd/1LesE The federal government is trying to find a location to store the nation's excess mercury deposits, with seven states being considered. But the government is quickly finding out that very few people want the stuff. A Colorado woman who showed up at a public forum on the issue last week had this to say about the plan: "No, no, no, no, no. No mercury." The Idaho governor was equally emphatic in his opposition, saying "not gonna happen." The Kansas City Council already passed a resolution against the plan. Even people in this city, where locals embrace the atomic legacy of the neighboring Hanford nuclear reservation, are a little skittish. "I don't like it," waitress Amanda Wyrick said as she poured a Half-Life Hefeweizen for a customer at Atomic Ale Brewpub and Eatery. "I would rather it not be close to me." The United States still exports surplus elemental mercury, the purest form, often to developing countries with less restrictive environmental regulations. Then-U.S. Sen. Barack Obama sponsored a bill last year to bar mercury exports beginning in 2013, and President Bush signed it. The bill also requires the Department of Energy to identify a safe, long-term storage site for up to 17,000 tons of mercury, which is so dense that it would fill less than half of an Olympic-size swimming pool. That includes stockpiles held by the federal government, as well as commercial supplies. Officials are considering sites in seven states: Washington, Idaho, Nevada, Colorado, Texas, Missouri and South Carolina. Six already operate as federal defense or nuclear sites, but residents are swiftly voicing opposition because mercury is such a toxic substance. + Read more: is.gd/1LesE • • • RESOURCES The Ultimate GPS Child Tracking Buyer's Guide is.gd/1MdM3 According to the FBI's National Crime Information Center (NCIC), 836,131 persons were reported missing in 2006. About 80% of those were juveniles (persons under 18 years of age), the overwhelming majority of which were girls. While most missing persons return home safely, that statistic shows that 2,290 times per day, parents or primary care givers felt the disappearance was serious enough to warrant calling law enforcement. Even more troubling, the number of missing persons reported to law enforcement has increased almost 500% in the past 20 years. What if, instead of sitting at home in a terrified panic that harm has come to your child, you could instantly locate him or her on a map, pinpointing their exact whereabouts? That's the promise behind a new wave of GPS and RF (Radio Frequency) tracking devices aimed at helping parents keep electronic tabs on their children. I've spent the last few months testing a number of these products at length, sorting out the good from the bad. The bottom line? Hollywood-style GPS tracking still eludes us, but there are some good products available that will indeed help parents keep track of AWOL kids. There's also some duds out there that either underperformed or simply don't work at all. Read on for the full review, including which products I recommend, and which ones you should avoid. + Read more: is.gd/1MdM3 • • • RESEARCH Autism Not Tied To Bowel Movement Patterns is.gd/1MrAp Reuters Health - Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report. Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol, and colleagues note in their study in the journal Archives of Disease in Childhood. However, based on their results, "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population," Emond told Reuters Health. Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders. During the first three and a half years of life, there were no major differences between the groups in such factors as stool color, consistency, the frequency of diarrhea or constipation, and of stomach pain. There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note. Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed." SOURCE: Archives of Disease in Childhood, July 2009. • • • Disorderly Genius: How Chaos Drives The Brain By David Robson newscientist.com. is.gd/1MlYg Have you ever experienced that eerie feeling of a thought popping into your head as if from nowhere, with no clue as to why you had that particular idea at that particular time? You may think that such fleeting thoughts, however random they seem, must be the product of predictable and rational processes. After all, the brain cannot be random, can it? Surely it processes information using ordered, logical operations, like a powerful computer? Actually, no. In reality, your brain operates on the edge of chaos. Though much of the time it runs in an orderly and stable way, every now and again it suddenly and unpredictably lurches into a blizzard of noise. Neuroscientists have long suspected as much. Only recently, however, have they come up with proof that brains work this way. Now they are trying to work out why. Some believe that near-chaotic states may be crucial to memory, and could explain why some people are smarter than others. In technical terms, systems on the edge of chaos are said to be in a state of "self-organised criticality". These systems are right on the boundary between stable, orderly behaviour - such as a swinging pendulum - and the unpredictable world of chaos, as exemplified by turbulence. The quintessential example of self-organised criticality is a growing sand pile. As grains build up, the pile grows in a predictable way until, suddenly and without warning, it hits a critical point and collapses. These "sand avalanches" occur spontaneously and are almost impossible to predict, so the system is said to be both critical and self-organising. Earthquakes, avalanches and wildfires are also thought to behave like this, with periods of stability followed by catastrophic periods of instability that rearrange the system into a new, temporarily stable state. + Read more: is.gd/1MlYg • • • PEOPLE Care Level Query As An Autistic Teen Died After He Choked is.gd/1Mp7O A high-needs autistic teenager, who died after he choked while no one was watching him, was meant to be receiving one-on-one care, the Coroner's Court heard during the week. Jesse Duncan-McGann was found lying on the floor at Peninsula Access Support and Training centre in Langwarrin in April last year. He was blue in the face when he was found by a carer, who admitted she did not know what disability he had or have up-to-date first-aid training. Jesse's case is the latest incident exposing a failure to care for young people with autism. The Sunday Herald Sun revealed the case last month of autistic man Luke Modra, who spent up to 20 hours a day locked in a suburban home while in the care of the Department of Human Services. An autopsy found Jesse, 19, had choked, but his carers said he had chewed his food well when he had lunch about 20 to 30 minutes earlier, statements tended to the court. Jesse had a habit of snatching food and eating it and he could choke if not supervised. Carer Katherine Clipsham said in court that staff had cleared away all food after lunch and they had only lost sight of Jesse for "a minute or so", before he was found. + Read more: is.gd/1Mp7O • • • Cassandra Wilson's Story Is The Heart Of Obama's Push To Overhaul Healthcare By abclocal.go.com/wtvg. is.gd/1Mrro Nearly 5 years ago we introduced you to a little girl who earned the nickname "Miracle on Ice." Today, her story is the heart of President Obama's push to overhaul healthcare and she's getting major attention. Cassandra Wilson as we first met her was skating away in November 2004 at the Detroit Skating Club. She wowed doctors and her own family because this was supposed to be impossible. Cassandra is epileptic and has up to 200 "atypical absence seizures" a day! Cassandra says, "I'm done ice skating. Now I play the electric guitar and I swim now." She adds, "I want to be a musician or a fashion designer." Fast forward to 2009 and Cassandra has moved on to new hobbies and into a new national spotlight. "It just started a whole ball rolling from you and Good Morning America, testifying before congress. It's just a whole snowball effect," says Cassandra's mother Penny Wilson Story continues below Advertisement Cassandra's parents have sold everything they have and racked up tens of thousands of dollars in debt to pay for her treatment. "She currently has the BCMH, only covers her epilepsy in the state of Ohio and so if we go into Michigan, so we can't even get her treatment for the aspergers," says Penny. The homeschooled eighth grader has now been diagnosed with a form of autism. This month, her family's plight grabbed the attention of Senator Ted Kennedy who cited her in an op-ed piece for Newsweek. "I was pretty shocked when he mentioned my name in the article and a whole paragraph about me," says Cassandra. Cassandra's mother does not have insurance, and right now, the whole family is living off of her dad's Medicare. Still the family says they're not giving up hope that President Obama's plan will give them relief soon. • • • Illinois Senior Doesn't Let Autism Slow Her Down By Deborah Bayliss is.gd/1MrPi Eighteen-year-old Amanda Rzepka of Elmwood Park is in many ways a typical teenager: She likes music, dating, fashion trends and talking on the phone with her friends. The Leyden High School District 212 senior fulfilled a dream as she shared the stage last week with fellow classmates in the district's theater production of "Honk," the story of Hans Christian Andersen's "Ugly Duckling." "I want to be a singer and an actress," said Rzepka, who has a mild form of autism. "I had no stage fright. I was brave enough to be on stage." Mark Bernstein, a theater production instructor and special education teacher with the district, said Rzepka has always wanted to be part of a stage production. "She is just great," Bernstein said. Rzepka, a West Campus senior, had two roles in the production. "I played the mother swan and a hen," Rzepka explained. "Mr. Bernstein gave me the role of the mother swan because he said I read the lines so well. I got the role of the hen because there was a shortage of students for roles," she said. With the memory of the night still fresh, Rzepka, with mom Mary Rzepka sitting nearby, recited lines from her role as mother swan. "Cry, cry my dear for the warmth of a mother's tears can thaw the stoniest frost." In addition to the typical teenage challenges, Amanda Rzepka rises to meet the challenges presented by her mild form autism and for leads a full life. Until January of this year, the young actress attended Metropolitan Preparatory School in Arlington Heights for special needs children. "Amanda's younger brother also has a mild form of autism," Mary Rzepka said. "I want both of my kids to be a success to show that people with special needs can be successful." + Read more: is.gd/1MrPi • • • Service Dog Gives Autistic Boy Chance At Normal Life is.gd/1MszG Last year, a boy not yet a man, got a new best friend. 5-year-old Zachary Lowe has autism, and now, he has a service dog named Lincoln. For 4 years Zachary's mom struggled with his autism and it was nearly impossible for them to go into public settings. "Anything from going to the store or a walk was a big ordeal for him; he couldn't do it without a breakdown of some sort," Janet Lowe said. But for a year, Lincoln has been by Zachary's side. Calming him, and, giving him a new chance at a normal life. Lincoln's biggest job is to tether Zachary because he often tries to run away. "Zach had a tendency to run, now he can't, Lincoln makes sure Zach doesn't go anywhere. Lincoln came to Zachary's family free of charge from Hearing and Service Dogs of Minnesota. A non-profit group that gives trained service dogs to families in need. "The autism assist dogs are the biggest demand; the list is a never-ending one," HSDM Executive Director Alan Peters said. Peters added right now there are 25 families on the wait list for autism assist dogs. Hundreds of dogs have graduated from training and are now based with Minnesota families with all sorts of needs like dogs for epileptics, the hearing impaired, or, with physical disabilities. • • • EDUCATION Berkeley Students Find Bridge To College Program tailored for youths with autistic disorders By Jackie Burrell, Contra Costa Times is.gd/1MsZ1 Sheryl Meeuwsen's college career started with such promise — a scholarship to the University of Massachusetts at Amherst. "It went downhill from there," she says. "I ended up failing out. Moved in with an aunt and uncle in Colorado Springs. Failed out of Pikes Peak Community College. I had no idea there was anything wrong with me." By the time Meeuwsen, then 20, was diagnosed last year with Asperger's syndrome — which is a particularly high-functioning disorder on the autistic spectrum — she was scraping bottom, unable to figure out why things had gone so wrong. Meeuwsen was hardly alone. Just over a decade ago a flood of children with autistic spectrum disorders began entering regular classrooms, mainstreamed under new and significantly more forward-thinking federal regulations. They were given individualized education programs — or IEPs — that played to their strengths, helped them compensate for their weaknesses, and gave them advocates to help steer through challenges. A number of specialized elementary and secondary schools, including Moraga's Orion Academy and Lafayette's Springstone, sprang up as well. Now, those youths are starting to age out of that protective, well-supported academic environment and head off to college. And many of them are struggling. All the challenges of freshman year are multiplied 500-fold when you're also dealing with autistic Advertisement spectrum disorders, says Janet Miller, director of Berkeley's two-year-old College Internship Program for young adults with Asperger's and similar disabilities. It's not a question of intelligence. It's regular life they have difficulty with — getting up in the morning, prioritizing tasks, and taking care of themselves. Autism affects executive functioning, the brain's ability to process the overwhelming surge of information that streams through our lives every moment. They have trouble interpreting events and social cues, and formulating an appropriate response. "More and more I saw a problem that repeats itself," says Miller, who came to Berkeley from Menlo College's disability services department. "There's a semester, perhaps a year, where they tried it the traditional way. Socially, they couldn't do it. You don't have the advocacy of an IEP team." + Read more: is.gd/1MsZ1 • • • COMMENTARY Deborah Kotz of US News: Autism and Vaccines Is the Case Closed? By Anne Dachel on Age of Autism. is.gd/1MpIZ Senior writer Deborah Kotz at U.S. News and World Report brought up the question that continues to dog health officials: "Autism and Vaccines: Is the Case Closed?" is.gd/1MpGX Kotz and U.S. News Health Editor, Dr. Bernadine Healy, have shown remarkable skepticism when it come to accepting the endless American Academy of Pediatrics/Centers for Disease Control and Prevention mantra, "Studies show no link." Healy and Kotz have reported on vaccine safety issues in the past and this coverage has not gone unnoticed by the AAP. Kotz said, "After reading my article and [one] by my colleague Bernadine Healy, M.D., leaders at the American Academy of Pediatrics wrote to U.S. News expressing their concerns that the articles would drive parents away from having their children vaccinated." To help settle the issue, Kotz and Healy sat down with AAP president, David Tayloe, MD, and president-elect, Judith Palfrey, MD. The video link is included in the U.S. News story. I was actually amazed listening to the opinions expressed by Palfrey and Tayloe. While they predictably denied that vaccines were in any way linked to ASD, they were surprisingly concerned about autism. Palfrey told us, "We must continue to look for the cause of autism. It is increasing. It's a terrible burden for families..." She said that officials need to "take our collective energies, with the National Children's Study, with everything we can possibly do to see what's going on. It's incredibly important." Tayloe echoed her emotion. "What in the world is going on? Is it pesticides in the environment? Is it all genetics? Is it something that happens prenatally?" Healy challenged both AAP officials who stated that the science is in on vaccines and autism and she brought up issues like vaccine-induced autoimmune-type encephalopathy and the development of "autistic-like behaviors." She emphatically stated, "We don't know as much about autism as we should." + Read more: is.gd/1MpIZ • • • What Really Causes Autism? Thousands of Parents Blame Vaccines By Scott Thill, AlterNet is.gd/1Mq7v "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks …to get back diagnoses that help explain away the deficiencies of their junior morons," actor and comedian Denis Leary controversially argued with patented flippancy in a chapter called "Autism Shmautism" from his 2008 book Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid. "I don’t give a shit what these crackerjack whack jobs tell you—yer kid is NOT autistic. He’s just stupid. Or lazy. Or both." That explosive insult, intensified by Leary’s decision to pen his riotous book under the assumptive moniker "Dr. Denis Leary," is just one of many bombs that has rocked either side of autism’s increasingly contentious divide. That currently includes, on one side, scientists and researchers hard at work on discovering the causes of the escalating neurological and developmental disorder, which according to a recent Cambridge University study could affect one in every 64 children. Complicating those efforts is the fact that autism’s far-ranging spectrum of psychological conditions has only widened with time, an increase in diagnosis, awareness and the overall environmental toxicity of our lives which we take for granted. But Leary’s crack also roiled the other side of autism’s battlefield. It’s commandeered by distraught parents of autistic children, who have mobilized their frustration with a medical and pharmaceutical establishment increasingly short on definitive answers but seemingly long on unnecessary pharmaceuticals and inflammatory theories. Along the way, it has become a critical mass movement aimed at injecting major amounts of anecdotal evidence into what before was almost purely a psychiatric or scientific debate. As a result, the conflict over autism has come to resemble autism itself: A connectivity disorder, fraught with crossed neurological wiring, threatening to spark into mass distraction. + Read more: is.gd/1Mq7v
Note: The opinions expressed in COMMENTARY are those of the author and
do not necessarily represent the views of the Schafer Autism Report LETTERS Subject: Needed - Parents of children with autism If you are the parent of a child with autism, only you know the daily reality of this disorder. Your participation in a short survey will help physicians and therapists understand how families cope with autism. The survey will take less than 5 minutes to complete and is completely confidential. Your contribution gives your child and family a voice which must be heard. Please click on the link below or copy and paste the address into your internet browser to take you to the survey. is.gd/1MsS6 This independent study is being conducted as part of the academic requirements for a PhD. - Kathy Herziger-Snider PhD Candidate Cardinal Stritch University Milwaukee, WI Today's SAR newslist is human compiled and provided through the support of paid subscription readers. - THANK YOU - |
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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. |
| Lenny Schafer editor@sarnet.org The Schafer Autism Report is a non-profit corporation |
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Vol. 13 No. 77
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