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RESEARCH Autism Study Reveals a 'DNA Tag' (Methylation) Amenable to Treatment sciencedaily.com is.gd/bkmLi
"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope that our studies as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals," said Valerie W. Hu, Ph.D., one of the researchers involved in the work from the Department of Biochemistry and Molecular Biology at The George Washington University Medical Center in Washington, D.C. "Since autism is very diverse in the array of symptoms present in any given individual, it is first necessary to be able to identify specific deficits in each individual in order to design and then prescribe the best treatment. As an example of this personalized approach to medicine, we identified RORA as one of the genes that was altered specifically in the sub group of autistic individuals who exhibited severe language deficits." To make their discovery, Hu and colleagues identified chemical changes in DNA taken from cells of identical twins and sibling pairs, in which only one of the twins or siblings was diagnosed with autism. The researchers then compared genes that showed changes in DNA tagging (methylation) with a list of genes that showed different levels of expression from these same individuals. Then the scientists studied the amount of protein product produced by two genes that appear on both lists in autistic and control regions of the cerebellum and frontal cortex of the brain. They found that both proteins, as predicted by the observed increase in DNA tagging, were reduced in the autistic brain. This suggests that blocking the chemical tagging of these genes may reverse symptoms of the disorder and demonstrates the feasibility of using more easily accessible cells from blood (or other non-brain tissues) for diagnostic screening. "For far too long, autism research has been side-tracked by the cranky notion that it's caused by the MMR vaccine," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "Studies like this, which define genetic and epigenetic changes in discrete subgroups of the autism spectrum, offer real hope that effective treatments and accurate diagnosis are closer at hand."
NEWS Supreme Court May Hold Key for Vaccine Foes By Tony Mauro, The National Law Journal, is.gd/bhfBT
One reason for her optimism is that the U.S. Supreme Court has agreed to hear next fall the case of Bruesewitz v. Wyeth, a non-autism case that asks the justices to decide whether the federal vaccine law pre-empts state law tort claims of vaccine design defects. David Frederick, a partner at Kellogg, Huber, Hansen, Todd, Evans & Figel who trounced Wyeth in a drug pre-emption case last year, will argue against Wyeth again in the Bruesewitz case. He'll face off against former Stanford Law School dean Kathleen Sullivan, now name partner and head of the appellate practice at Quinn Emanuel Urquhart & Sullivan. If Wyeth wins, then more than 5,000 families making autism-related vaccine claims may not be allowed to sue vaccine makers in tort actions after they are adjudicated under the so-called "vaccine court" system Congress devised in 1986. In part to keep vaccine manufacturers from leaving the field, Congress established a special system for compensating vaccine injuries. The cases are handled by the claims court in an expedited, no-fault process. Claims are made against the government, not vaccine makers. To a limited degree, the law left the door open to taking cases to court after losing in the claims system, and the high court will decide when that can happen. If Wyeth loses, then parents may find a more sympathetic state-court forum for their claims than the one Congress created. "The system hasn't worked the way it was supposed to work at all," said New York University School of Law professor Mary Holland, who has written legal briefs on the side of parents in autism cases. "Through the Bruesewitz case, the Supreme Court will find out the program is a disaster." Cedillo agreed. "It wasn't supposed to be adversarial; it was supposed to be quick and family-friendly," she said. "It has been none of those things. The Supreme Court case could give us another option." Cedillo's daughter was born healthy in 1994 but, a week after receiving the standard measles-mumps-rubella vaccine in 1995, she ran high fevers and her development slowed. In 1997, she was diagnosed with autism. Now 15, Michelle requires constant monitoring because of frequent and life-threatening seizures, according to her mother -- and her case is still pending. "It's really sad." The Cedillo family volunteered to be the first "test case" of one of the theories of causation linking the vaccine to autism. After a three-week hearing and the testimony of 17 witnesses against her, a special master last year dismissed the claims, asserting the evidence was "overwhelmingly contrary" to the claim that vaccines containing mercury caused Michelle's disabilities. Last month, Ronald Homer of Conway, Homer & Chin-Caplan in Boston challenged the ruling in the U.S. Court of Appeals for the Federal Circuit. He claimed the system is biased because the government fears that linking autism to vaccines will scare parents away from having their kids vaccinated. "She was denied compensation because she was a messenger," Homer wrote. A second test case in which a family lost, Hazlehurst v. HHS, is also on appeal at the Federal Circuit. For its part, the government claims that Cedillo had six expert witnesses of her own. In a brief filed in the Cedillo case, Justice Department lawyer Lynn Ricciardella said the special master's decision "reflects a careful and well-reasoned analysis." • • • Skanky UK Billboards Draw Attention To Autism By Amelia Gentleman guardian.co.uk is.gd/bkcGe One woman's bold campaign to increase awareness of autism is causing controversy. But has it had the desired effect? Polly Tommey was finding it difficult to attract attention to her campaign for increased awareness of autism, so she took her top off and posed, Wonderbra-style, for billboard posters beneath the words "Hello Boys". The boys she has in mind are the three main party leaders, and the appearance of dozens of these images around London last week prompted a surprisingly swift response from representatives of each party. Tommey was invited by an adviser to Gordon Brown to meet Phil Hope, care minister, to discuss her concerns, while David Cameron's office contacted her to promise that a detailed response was on its way. Nick Clegg wrote a letter pledging a week's respite for those caring for people with autism, and improvements in special educational needs training for teachers. There has been a swift but mixed reaction from other autism charities, some uncomfortable with the style of Tommey's campaign and the agenda behind it, but she shrugs off the criticism. The poster was, she says, simply a ruse to force people not to avert their eyes from the subject of autism, and its success is evident, she argues, in the instant reaction from the politicians she was targeting. To those people who have emailed the Autism Trust, the charity she founded, saying the image is degrading to women, she replies: "What is degrading is how people with autism are forced to live." "It's sad that billboards have to go up in the first place to get autism the attention it deserves," she says. "I'm 43; I shouldn't be on billboards taking my top off, but if that's what's needed to get attention, then I'll do it." Tommey is the mother of 14-year-old Billy, who has autism, the editor of the Autism File, a magazine directed at parents and carers, and the founder of a charity dedicated to developing autism centres across the country. This is where adults with autism could be housed and employed, and where the rest of the public could receive training about the condition. She is also a former body double for actor Charlotte Rampling, making her relatively relaxed about being photographed in her underwear. The posters, funded by anonymous sponsors, went up last week to mark World Autism Awareness Day, and come a year after a similarly arresting set of billboards that featured a postcard to Gordon Brown with Tommey's home phone number scrawled across it, and promising: "I can save you £508m a year [through improved autism care]. Please call me when it's convenient." That campaign secured her an invitation to breakfast with the wife of the prime minister, Sarah Brown, and time with the government's health advisers. Tommey's assertion that 6 million voters could be swayed by positive commitments on autism comes from a complicated calculation based on the number of people with autism across the country, and the number of family members, carers and teachers who she believes would vote for any party that pledged greater resources for the condition. Autism affects one in 100 adults, and there are an estimated 300,000 adults with a condition somewhere on the autistic spectrum. "I know of 14 people in my family alone that would vote for any leader who would seriously consider initiating a real action plan for Billy," she says. Tommey has five points she wants party leaders to commit to, including: demands for improved training in autism for public sector workers, a commitment to building regional autism centres, and funding of further research into the condition. Her campaign has proved divisive also because of her record of supporting Andrew Wakefield, the chief proponent of the theory of a link between the vaccination against mumps, measles and rubella (MMR) and a form of bowel disease and autism. His research triggered a huge dip in the numbers of children being vaccinated. The General Medical Council found him "dishonest" earlier this year, and the Lancet subsequently retracted the 1998 paper in which he had set out his findings. + Read more: is.gd/bkcGe
RESOURCES $5 iPad App Helps Autistic Teen Communicate From a company release.
iMean was developed by Michael Bergmann, a New York-based filmmaker whose son is autistic, and Richard Meade-Miller, an 18-year-old first-time programmer from Los Angeles. Bergmann’s son, Daniel Bergmann, 14, was not only the inspiration for the app, but provided significant input on the app’s design and feature-set. “This is something the iPad can deliver in a way that few other devices could,” explains Bergmann. “It cannot be done on a small device like a phone because many of the users cannot operate such a small keyboard. But the iPad, with its unique combination of large size, touch display, and extreme portability, is perfect." Autism often includes physical limitations, such as motor-control difficulty, that make actions like speech or typing impossible. Some autistic people communicate using a card with a large alphabet printed on it, which they point to with a pencil to spell out words. This process often includes the active participation of a facilitator who encourages the user and says the words as they are being spelled. iMean presents a similar letterboard on the entire face of the iPad. The user points with a finger, and the app collects the words on its text display as they’re spelled out. iMean also offers word suggestions to complete partly-spelled words, speeding up the conversation. The facilitator can participate but the device encourages greater independence in communication. “Dan was using it reasonably well within minutes,” recounts Bergmann. “He used it to tell me that his favorite feature of the app is word-prediction, because it makes him read more." Much of the technical development of iMean was done by a self-taught, first-time programmer, Richard Meade-Miller, who learned the iPad development language and programmed the app in just three very intensive weeks. “My mind is a little blown,” confesses Meade-Miller. “I can barely believe I have an app in the App Store three weeks after the first time I opened the SDK [Apple’s iPad Software Development Kit]. It’s very exciting to be able to jump into something that’s totally new to me… and succeed!" The app also incorporates features developed by Aram Julhakyan of ZenBrains, Barcelona, Spain. Bergmann and Meade-Miller expect to extend the app with additional features to help a variety of non-speakers to communicate in different media. Bucking the trend in costly software aimed at people with disabilities, iMean is priced at a very modest $4.99, just one percent of the price of the iPad itself. • • • TREATMENT Sensory Integration Therapy Swings for Autism May Cause Injury By Denise Reynolds RD is.gd/bhiQU Two physicians, one in Israel and one in Cincinnati OH, have found a common cause for an uncommon eye injury in autistic children - a therapeutic swing which was shedding metallic particles. The “detective work” is published in the current issue of the Journal of the AAPOS, the American Association of Pediatric Ophthalmology and Strabismus. The first patient, an 8-year-old boy, had a recurrent corneal metallic foreign body is his right eye. His parents provided a meticulous history of the child’s activities, which led his physician to link the injury to the metallic suspension on his home therapeutic swing. The second patient, a 10-year-old boy, presented with a similar metallic foreign body in his eye. He had suffered from 3 similar events in the past three years. He was using a similar swing. According to author Dean J. Bonsall, MD from Cincinnati Children's Hospital Medical, "Raising awareness of this potential source of eye injury in children with autism is paramount. This type of injury is easily preventable by wearing protective eye wear or modifying the swing apparatus." Children with autism are not always able to communicate the presence of the foreign body or the pain associated with it. • • • PUBLIC HEALTH Vaccine Contamination: Pig Virus DNA Found in Rotarix By Barbara Loe Fisher, NVIC. is.gd/bkglF On March 22, 2010, Food and Drug Administration (FDA) officials adhering to the precautionary principle advised American doctors to suspend use of Rotarix vaccine until the agency finds out why DNA from a swine virus (porcine circovirus 1 or PCV1) was found in the live rotavirus vaccine. The FDA said there is "no evidence at this time" that the vaccine manufactured by GlaxoSmithKline and given to babies at 2,4 and 6 months of age to prevent diarrhea poses any safety risk. Independent Lab Using New Technology Found Contamination The discovery that viral DNA is contaminating Rotarix vaccine was made by a team of scientists at an independent research lab in San Fransisco, California, where they used new technology to detect fragments of viral genetic material in vaccines using genetic sequencing. More testing confirmed that many copies of DNA from the pig virus were present in all Rotarix vaccine lots released since the vaccine was licensed in 2008 because the pig virus DNA also contaminated the working cell bank and the original viral "seed" stock, from which Rotarix vaccine was first produced. + See video: is.gd/bkglF • • • SAVANT CITINGS The Surfing Savant In the water, Clay Marzo may be one of the greatest riders of all time. It's when he gets back on land that the trouble starts. Inside the obsessive mind of an unlikely prodigy. By Paul Solotraroff, Rolling Stone Magazine.
Then he goes and does it all day long. * But if you sit and list the things that Marzo has trouble doing, they quickly outrun the things he finds easy. He's unable, for instance, to eat a single meal without much of it ending up on his shirt or the floor. Out of water, he has trouble interacting with other people, either staring in bafflement at their grins and jokes or avoiding casual contact altogether. + Read more (long) www.sarnet.org/lib/SurfingSavant.pdf • • • PEOPLE Missing Autistic 6-Year-Old Found Dead In Lake is.gd/bkmmw Villa Rica, Ga. - Channel 2 Action News reporter Ross Cavitt has confirmed with Villa Rica officials that a missing 6-year-old autistic boy has died after he was found in a lake near his home. Cavitt reported that Christian Dejons was taken to Tanner Medical Center Villa Rica. Dejons went missing from his home in the Mirror Lakes subdivision just before 2 p.m. Wednesday. His body was spotted at about 3:40 p.m. in one of the lakes inside the subdivision by a state patrol helicopter. The Mirror Lakes subdivision has a golf course with heavily wooded areas. Dejons' parents told searchers the boy enjoyed the lake area of the subdivision and that he had a history of wandering, Cavitt said. • • • Jenny McCarthy and Jim Carrey Split By Amy Sciarretto. After five years, funny couple Jim Carrey and Jenny McCarthy are no more. The pair both announced their split via separate tweets on Twitter. The news was confirmed to The Associated Press by their publicists, so looks like celeb PR flacks are still needed to verify tweets! The former duo each thanked fans for their support. It's a shocking parting of ways, since Carrey was like a father to McCarthy's (formerly) autistic son, Evan. • • • EVENTS The 5th Annual Long Island Autism Fair Over 90Exhibitors! Sunday, April 18th, 2010 9AM-6PM Farmingdale State College Scheduled Speakers: Dr. Alan Sherr Lisa Rudley Dr. Lawrence Palevsky Cassandra Weingarten Dr. Keri Chiappino Dr. Stephen Shore Bill Heslin Dr. Bobby Newman Dr. Sidney Baker Gloria Wagner Rev. Lisa Sykes Helene Fallon Dr. Lenny Caltabiano Dr. Andrea Libutti Marlene Rosenson Dr. Mark Geier Scott Shoemaker Dr. Donna Conk David Geier Holly Bortfeld Marsha Luftig Mary Coyle Dr. Jeffrey Becker Edward Nitkewicz • Award Presentations • Samples • General Info Tables • Raffles • Sell Your Gold • Horse Rides Tickets: $ 25 online/$ 35 at the door (plus tax & fees) Children 12 & Under Free www.AUTISMFAIR.com • • • COMMENTARY Understanding Autism in Adulthood By Neil S. Greenspan, Immunologist, Department of Pathology at the Case Western Reserve University School of Medicine huffingtonpost.com is.gd/bklJE Recently, a family friend updated my wife about her young adult son who has relatively high-functioning autism. His current situation is reasonably illustrative of the realities for many individuals with similar attributes. He lives alone, has no job, and limited social life. So while the media prefers to focus coverage on the sometimes surprising talents of particular individuals with autism, or of late, on whether the diagnosis of Asperger's Syndrome should be included within or kept distinct from the broader diagnosis of autism, the most fundamental problems confronting the vast majority of young, and even not-so-young, adults with autism-related disabilities are left unaddressed. Across a range of cognitive and communicative abilities, particular challenges arise, in relation to social life, employment, housing, and health care. Social Life By diagnostic definition, most individuals with autism have difficulties initiating, establishing or maintaining interpersonal relationships. Not surprisingly, therefore, many young adults with autism, whether they live with their parents or independently of their nuclear families, are socially isolated. Local agencies responsible for those with developmental disabilities typically provide little to no support for socialization or recreation. Unless an enterprising private citizen or group of such citizens (usually parents of an affected individual) steps forward, the social and recreational opportunities for adults with autism remain severely restricted. With modern tools of communication and the considerable energies of many parents, siblings, or other family members, the relevant government agencies could at least more effectively coordinate such efforts. Better yet would be some degree of tangible support. Employment While the present the employment picture is rather depressing for adolescents and young adults (and for many others) in general, it is especially so for individuals with autism. Employment prospects for young adults with autism are particularly problematic if one is talking about what are referred to as "competitive" positions, as opposed to jobs in sheltered workshops. For individuals with autism who are verbal and have substantial cognitive abilities, such sheltered jobs would be deathly boring and frustrating. Nevertheless, without the requisite social skills, obtaining any position commensurate with ability is extraordinarily difficult. I know of a young adult in my area with an undergraduate engineering degree from a major state university who has been unable to find any job after looking for close to three years. + Read more: is.gd/bklJE Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.  Send your LETTER
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Vol.
14 No. 33
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