In This Edition
TACA News
In the News
6. Daily Autism Updates for Families
7. Defrocked doctor answers critics about vaccines
8. Autism and Assault in Our Family
9. Five Benefits of Growing Up With an Autistic Sibling
10. Lessons From the Egg Recall: Cheap Food Makes You Sick
11. Surfers Healing provides memorable day for autistic kids
12. iPad Apps That Help Autistic Children's Development
13. NIH Launches Effort to Define Markers of Human Immune Responses to Infection and Vaccination
14. Vaccine refusals are on the rise
Are you receiving TACA's regional newsletters with information on local TACA meetings and events? We can't send it to you if we don't know where you are! Please Join TACA (it's free) or update your membership to include your location. If you include your mailing address, you'll receive TACA's print newsletter, Talking Autism.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
September 2010 #1
Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.
We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
1. Find a TACA Meeting
Come to a TACA Meeting!
TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.
Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.
Are you wondering what happens at a TACA meeting? Watch our video.
2. Join Us for Coffee Talk!
Come and receive some extra support or to
chat all topics related to autism and meet
other TACA families at these informal,
monthly get-togethers.
3. Autism Journey Seminars
Costa Mesa, CA
Saturday, September 25, 2010, 8:30 a.m.-4:30 p.m.
Greenwood, IN,
Saturday, October 16, 2010, 9 a.m.-5 p.m.
After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day Autism Journey Seminar is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.
Who should attend?
Our one-day seminar is geared for parents and caretakers of children affected by autism. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 18 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.
4. Ante Up for Autism
4th Annual Ante Up for Autism
November 13, 2010
This gala is TACA’s main fundraiser held at the beautiful St. Regis Hotel in Monarch Beach, California.
This fun filled night includes: celebrities, a poker tournament & professional poker players, athletes, live and silent auctions, gourmet food, and many surprises -- all to support TACA’s mission and the families we serve. The event is designed for our corporate and individual sponsors that want to “go all in” to support families affected by autism. (Note: TACA does not push this event to the families we serve.)
This event needs the community’s support. TACA has a special event page with videos and photos from past years, and the latest up-to-date event information for this year’s event including hosts, a guest list, and more.
• Sponsorship Information & Opportunities
• Download a Sponsorship Commitment Form
5. Special Education Law Day
Saturday, October 23, 2010, 8 a.m.-5 p.m.
Alice Peters Auditorium, Fresno State University, Fresno, CA
Sponsored by Talk About Curing Autism (TACA), Central California Autism Center and Central California Autism Society
Pre-registration is required
Thursday, November 11, 2010, 8 a.m.-5 p.m.
National Autism Association Conference
TradeWinds Island Grand Resort, Tampa, FL
Register now
Advocating for your child is often a complex and sometimes counter-intuitive process. At Law Day, parents will learn the basic concepts of special education law, the importance of strategizing and how to use this knowledge to gain control of their child's education.
It's an intensive day of training designed to get parents up to speed quickly and become a more effective advocate for their child. To facilitate this process, each participant will receive a workbook with supporting information on key concepts, selected sections of IDEA, background facts on case studies as well as recommended reading and resources.
The primary goal of Law Day: parents will become empowered IEP team members by gaining an understanding of special education law, which then can be directly applied to their child's specific needs and situation.
Presenters:
• Timothy A. Adams, Esq., special education attorney
• Lynne Arnold, TACA mom
• Mitchel Perlman, clinical forensic psychologist
6. Daily Autism Updates for Families
All news related to autism: AgeofAutism.com
7. Defrocked doctor answers critics about vaccines
By LANDON HALL
THE ORANGE COUNTY REGISTER
To many long-suffering parents of autistic children, he's a crusader. To many pediatricians, scientists and public-health advocates, he's a charlatan and a central figure in the anti-vaccine movement.What Dr. Andrew Wakefield is not is conciliatory. Although his research was largely discredited and his medical license stripped in his native Britain, Wakefield has remained outspoken about what he sees as a campaign by the pharmaceutical industry to destroy him. He is also not backing down from his claims that vaccines targeting childhood illnesses, particularly the measles-mumps-rubella vaccine, are insufficiently tested for safety.
Dr. Andrew Wakefield, who several years ago published research establishing a link between autism and the Measles Mumps Rubella vaccine, has written a book titled "Callous Disregard: Autism and Vaccines: The Truth behind a Tragedy."
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"This is about how the system deals with threats to its interest."
Wakefield spoke in late July at a meeting of Talk About Curing Autism, the Costa Mesa-based nonprofit that was started in 2000 by 10 families. Now it offers help to more than 17,000 nationwide. During that timeframe, the rate of diagnosis of autism spectrum disorder has risen steadily.
In December the Centers for Disease Control and Prevention, using data from 11 states, estimated that as of 2006, 1 in every 106 children had been diagnosed with an autism spectrum disorder by age 8, up from 1 in every 167 four years earlier. Among boys, the ratio jumped to 1 in 66 from 1 in 105 in the earlier survey.
Wakefield and his colleagues at the Royal Free Hospital in London spotted this trend mostly by accident. Wakefield is a gastroenterologist, and he began observing young patients with bowel problems: searing abdominal pain, constant diarrhea and rashes. The symptoms often accompanied behavioral issues known to be associated with an ASD, such as hand-flapping, loss of language and communication skills.
He and a dozen other researchers authored a study that was published in The Lancet, a respected British medical journal, in February 1998. It mentioned that the parents of eight of 12 children examined noted that the onset of behavioral symptoms came not long after the children got an MMR (the "triple jab," in British parlance) vaccination.
Nowhere in the paper do Wakefield and his team make a direct link between autism and the MMR, but the mention of the parents' assertions, followed by a news conference upon the paper's publication — at which Wakefield called for the MMR to be separated into three shots, preferably a year apart — sent shockwaves through the medical community and the public. MMR vaccination rates plummeted and haven't recovered to peak levels. A surge of the highly contagious measles virus was reported in Britain.
Wakefield's tactics, motivations and ethical decisions were later scrutinized. In January of this year, the General Medical Council found that Wakefield had "repeatedly breached fundamental principles of research medicine." The Lancet paper was retracted, and Wakefield and a senior colleague were "struck off" the GMC registry, meaning their licenses to practice medicine were revoked.
Wakefield says he never uses the word "conspiracy" to describe the inquiry. Instead he views it as a "ruthless, pragmatic approach to dealing with dissent. If you are compromising my policy or my profit, I'm going go after you and I'm going to make your life hell."
No credible research has found a link between vaccines and autism. In March, a federal "vaccine court" in Los Angeles ruled that thimerosal, a mercury-based vaccine preservative, does not cause autism. Many parents of autistic children had long believed that thimerosal caused the neurological damage that led to autism, even though the chemical was phased out by 2003 and the autism rate continued to climb afterward. In 2009 the vaccine court ruled that MMR does not cause autism.
Vaccine advocates say that despite these decisions, the damage by the skeptics has been done. Recently the Watchdog Institute, a nonprofit journalism center at San Diego State University, reported that public and private schools granted 10,280 "personal belief" exemptions for vaccines statewide in the fall of 2009, up from 2,719 in 1990. And in August, the national research company Rasmussen Reports released a poll showing 52 percent of U.S. adults are concerned about the safety of vaccines; 27 percent said they were very concerned.
Wakefield says the skepticism is healthy, and that the onus is on vaccine-makers to rigorously test their products for safety. In his new book, "Callous Disregard: Autism and Vaccines, the Truth Behind a Tragedy (Skyhorse Publishing, $26.95)," Wakefield writes: "those who do not mandate a safety first agenda are the greatest threat to the vaccine program; they are ultimately anti-vaccine."
The book is dense with counterpoints and citations meant to prove his case. The questions Wakefield raised are highly relevant to vaccine-preventable diseases.
Incidence of pertussis (or whooping cough), a childhood illness once virtually eradicated in California, has come back with a vengeance, triggering the worst outbreak of the disease here in a half-century. Inside the Costa Mesa Hilton where the TACA meeting was held, Wakefield was asked by a parent about pertussis. Wakefield said parents shouldn't feel guilty about questioning how the vaccine is made and how well it works. "When you are stonewalled in your questions about safety," he said, "use your instincts."
Philip Schwartz, a senior scientist at CHOC Children's Research Institute, says parents often turn to the Internet or support groups, and end up seeking out fad cures or junk science in desperation to find relief for their children. Autism "is not a disease, it's a set of diseases, and the reason it's a set of diseases and not a disease is that we really don't know what it is."
A certain percentage of a community needs to be vaccinated to ensure "herd immunity," meaning that even those who have refused vaccines will be protected. The vaccination rate needed to reach this point varies depending on the disease, but it ranges from about 80 percent to 94 percent. Once the level of vaccination falls below that point, "it could be catastrophic," Schwartz said.
Simran Garcia of Anaheim Hills was among the parents who attended the TACA meeting. She believes in Wakefield, and believes a vaccine caused her son, Akshay, to develop autism. She said he was developing normally until his MMR vaccine at 15 months. He then lost all his language skills and started melting down in public at the slightest disturbance. "He used to dance with me, and then he didn't do it. He would sit there with his hands covering his ears." Now 8, he's doing better, thanks to a gluten-free diet. But "he's got other issues — gut issues, seizures. I had a healthy kid and I suddenly didn't. People say, 'You're just looking for something to scapegoat.' I don't think it's the vaccines alone. The vaccines are what helped pull the trigger."
The controversy surrounding Wakefield has overshadowed his original work, which was finding a solution to these children's gastrointestinal problems. In "Callous Disregard," there are multiple cases of children getting relief through a combination of drugs and diet to treat their intestinal inflammation. Often this regimen would end up solving the behavioral issues as well. In his presentation Wakefield showed a photo of a girl who had bruises on her face from repeatedly hitting her head against a wall, unable to stop the pain in her stomach. "What changed this child's life for all time was a diet," he said.
For children who continue to have neurological impairments associated with an ASD, Wakefield offers another theory: The damage starts in the intestines, then makes its way to the brain.
"Were we, by treating the bowel disease, removing a source of toxins getting into the body? We didn't know, and we still don't know," he said. "But others have now got onto that idea and are looking at it in great detail, because we believe it's true."
Wakefield now lives in Austin, Texas, where he served as a board member at an autism center called Thoughtful House, until he resigned in February. He says he's now involved in assisting others with research to look at other factors and their possible relationship to autism, such as parental age and environmental pollutants.
"It has been a far less rocky road for me than it has for you guys, so no complaints," he told the parents at the meeting. "I have no intention of going away."
Contact the writer: lhall@ocregister.com or 714-796-2221
8. Autism and Assault in Our Family
Kim Stagliano on the HuffingtonPost.com
Three summers ago, I wrote a post for HuffPo called, "I Will Shake Your Foundation" on the fears my husband Mark and I have about bullying, abuse, neglect, rape and murder of our three defenseless daughters with autism.
Danny Bonaduce, the child star from the seventies TV show "The Partridge Family" had growled, "I will shake your foundation!" in a mock jealous husband rage during his reality TV show, implying he'd rock anyone who approached his wife. I adopted the phrase.
Last week, a 24-year-old special education school bus monitor from Bridgeport, Connecticut was arrested and charged with three counts of assault against a handicapped person and three charges of risk of injury to a minor. That minor is Mark's and my nine-year-old daughter.
The Connecticut Post newspaper has been covering the story Court Case of Woman Accused of Hurting Autistic Child Continued :
According to police, on at least three occasions last April and May, Davila, a monitor on a bus for special needs children for the First Student Bus Co., abused the little girl. Police said there could have been more incidents but only three were captured on the bus's video surveillance camera.
Police said the girl's parents were trying to figure out how their nonverbal daughter kept getting bruises and sprained fingers on her right hand when on May 19 they received a call from the nurse at Frenchtown Elementary School that their daughter had arrived at school that morning crying hysterically. The parents then demanded to see the video from their daughter's school bus.
That video, which also had audio, showed Davila grabbing the girl's hands and the girl then crying out in pain.
Police said they then obtained DVD copies of the bus videos for April 27, April 29 and May 19. On the 27th and the 19th the driver of the bus was Davila's mother. Police said the April 27 video shows Davila, during the bus ride from the school to the girl's home, putting her hands in the area of the girl's hands. With each movement the girl's cries get louder, police said.
On the April 29 video, Davila is heard telling a substitute driver to stop at the girl's home first after they leave the school, according to police. "Because she (the girl) will (obscenity) her pants," she explains, and within minutes of leaving the school the video shows Davila again reaching towards the girl's hands and the girl is heard crying, according to police.
On May 19, the girl is seen on the video boarding the bus with her mother who assists her being seated. When the mother leaves the bus Davila is heard saying, "Goodbye mom," police said. She then touches the girl's head twice and then grabs the girl's right hand and begins to manipulate it as the girl whimpers, according to police.
We've had an epidemic of abuse against people with autism in the last several months.
A mother in Dallas murdered her youngsters. A mother in The Bronx shot and killed her 12-year-old son and herself. A 20-year-old man in Pennsylvania was left to die in a residential school's van on a hot summer day. A father in Canada killed himself and his son in their basement. A socialite in Manhattan plied her son with pills in a luxury hotel until he seized to death. A mother in England jammed caustic cleaning product into her son burning his throat and stomach until he bled to death.
And now our daughter, nine years old, preverbal, 62 pounds soaking wet, sitting quietly on her school bus was (allegedly) assaulted once, twice, thrice, four times and who knows how many more?
Let the foundation shaking begin.
9. Five Benefits of Growing Up With an Autistic Sibling
By Dana Fialco, CenturyCityNews.com
Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:
1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.
2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.
3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.
4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.
5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.
Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.
Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the "Starabella" three-book audio series. Visit her online atwww.starabella.com.
10. Lessons From the Egg Recall: Cheap Food Makes You Sick
David Kirby on the HuffingtonPost.com
Americans currently "enjoy" the cheapest animal protein in history. Such a monumental achievement could only have been attained through the industrialized mega-production of meat, milk and eggs -- which now cost about $1.56 on average for a large white dozen in the nation's supermarkets.
At just 13 cents apiece, even the poorest American can afford a two-egg omelet in the morning: It will set them back by less than four-percent of the Federal hourly minimum wage.
But now Americans are finally coming to terms with the true cost of their wondrous 26-cent breakfasts: a gargantuan recall of mass-produced eggs -- 380 million of them -- contaminated with deadly salmonella bacteria. Hundreds of people have reportedly been sickened, and the true number could be higher.
The laying hens in question were raised (held prisoner is a more apt term) in Iowa, in a massive concentrated animal feeding operation (CAFO), better known as a factory farm. In the typical egg-laying CAFO, hens are crammed into battery cages and given room to move in an area that's roughly equivalent to a piece of typing paper.
Cages are stacked one on top of the other, sometimes 10 or more high, inside large confinements that never see the light of day. Fresh air is pumped into one end, and air fouled with bacteria, viruses, mold, dust, antibiotics, litter and dander spits out the other.
Residents of Florida, Arizona and California have already approved ballot measures that will ban battery cages for hens, and the government of Ohio recently completed major negotiations that will also stop the sickening practice there, as well.
The exact source of the salmonella bacteria now making headlines is not known, though some media reports suggest it may have been in the birds' feed. MSNBC also reported today that the hens' ovaries had been infected with salmonella, which in turn infected the eggs, and then the bargain-hungry shoppers -- and hotel and restaurant guests -- who ate the contaminated food.
Salmonella is largely a problem for factory-farmed eggs. Laying hens raised in organic or sustainable conditions are allowed to peck around outdoors for grubs and high-quality feed provided by farmers who are as concerned about animal health and the safety of the food they sell as they are about keeping their costs -- and prices -- to a minimum. These eggs are less likely to carry disease, and to me at least, they taste a whole lot better.
Even the FDA recognizes the risk from factory eggs. Last month, the agency issued a rule requiring mandatory "flock-based salmonella-control programs,' that include routine microbiologic testing -- for producers with more than 50,000 hens.
Since I began working on my book, Animal Factory, I started buying organic, humanely produced eggs in my supermarket. Yes they cost a lot more: $4.99 a dozen, or about 42 cents apiece. But an 84-cent omelet still seems like a good value to me, especially when I know that the animals were raised like animals are supposed to be raised, and that I'm supporting sustainable farming practices, and not CAFOs, with my limited consumer dollars. (Then again, I don't have a large family to feed, so it's admittedly easier for me).
What good is a 13-cent egg if it's going to get you hospitalized? And why isn't the federal government doing more to encourage and even subsidize the production of humanely-raised and less pathogenic eggs?
Instead, we are told we will have to learn to live with it. The FDA says to cook all eggs thoroughly, but I like my yolks runny and my omelets soft, thank you very much. And the FDA is also recommending that food service providers offer only pasteurized eggs and "egg products" (scrambled eggs in a box) at their establishments.
Of course, The Great American Egg Recall is terrific news for one sector of the staggering economy: egg pasteurizers.
But seriously: Have we really come to the point where we must disinfect our eggs before we consume them? Wouldn't it be better to focus on producing affordable eggs that won't kill you in the first place?
11. Surfers Healing provides memorable day for autistic kids
By Vince Nairn, StarNewsOnline.com
The sight of her 7-year-old son playing in the ocean brought Amanda Hooks to tears.
Hooks and her son, Colin, were one of about 100 families that participated in the fifth annual Surfers Healing at Wrightsville Beach Thursday. The all-day event let children with autism get into the water and surf with professionals from as far away as Hawaii.
"It's just amazing to see the kids have the opportunity to do this," Hooks said. "For a little while, they don't have to be the minority. They get to be the center of attention in a good way."
Hooks has lived here for nine years. This is the second time Colin has participated in the event.
"(I was) a little scared, but happy," Colin said of getting in the water.
Colin said his favorite part was being around the professionals, and his mother held back more tears as she had nothing but praise for the people that put on the event.
"This is a great reminder of what a great community this is," Hooks said. "I feel the love and support of these volunteers. To see your kid get to surf, is a pretty incredible thing."
One at a time, a surfer rode a wave with the child laying flat on the board. As the wave progressed, the pro would pull the child up on the board and they would ride it together to the shore.
"It's for the cause, It's great," said surfer Zane Aikau. "With a bunch of locals packaged with the good cause of autism, this event is awesome."
Zane's uncle, Eddie Aikau, was a well-known surfer and lifeguard in Hawaii before he died in 1978. Growing up on the beach, Aikau became serious about surfing early. But he said also learned it is important to help others.
"It's not only a daily, weekly thing. And it's all worth it," Aikau said. "That's what aloha is. It's love and support coming from the heart."
Event director John Pike's family has been affected by autism. He said that's what made him want to get involved with the program.
"This is a fellowship," Pike said. "Our kids typically sometimes aren't going to play team sports. To me, autism and board sports work."
Surfer Israel "Izzy" Paskowitz started the event in California after his autistic son enjoyed a day on the waves with his father one day. It has expanded, as programs are now put on across the country.
"It just keeps getting bigger and better every year," Pike said. "The day registration opens every year, it closes within 10 minutes. It's getting that popular."
Donna Chalfant and her 11-year-old son Matthew attended the event for the first time. They heard about it too late to enter last year, which only built the excitement to finally get in the ocean.
"(Matthew) loves the water," Chalfant said. "He can't wait. I'm having trouble keeping him under control. He's ready (to get out there)."
Chalfant said the event reflects the helpful attitudes of many people in the community.
"Wilmington is a welcoming community, a can-do community," she said. "No matter what the struggles are, there are things out here to help."
12. iPad Apps That Help Autistic Children's Development
The mother of Nolan, a young boy diagnosed with autism, found herself pleasantly surprised by what technology could do to help her son's development.
Nolan's mom created a list of fun iPad apps that are also useful for learning social skills, fine motor skills, language and communication skills, sensory skills and others.
This video highlights a few of her and Nolan's favorites, like Tom the Talking Cat, who repeats back out loud whatever you say -- just the way you said it -- so kids can hear themselves as they tell a story.
"I love how he encourages my child to communicate and build his vocabulary," Nolan's mother said.
A complete list of autism-friendly iPad apps can be found at BookroomReviews.com.
13. NIH Launches Effort to Define Markers of Human Immune Responses to Infection and Vaccination
Recovery Act Enables Research That Could Help Improve Vaccines and Therapeutics
A new nationwide research initiative has been launched to define changes in the human immune system, using human and not animal studies, in response to infection or to vaccination. Six U. S.-based Human Immune Phenotyping Centers will receive a total of $100 million over five years to conduct this research.
Funding for the centers is provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health. Support for the first year of this initiative will come from the American Recovery and Reinvestment Act.
“Recognizing the differences in immune system activity before, during and after exposure to an infectious agent or vaccine will help in the development of safer, more effective therapeutics and vaccines,” says NIAID Director Anthony S. Fauci, M.D. “This research effort also will contribute to the ongoing evolution in our ability to study the immune system.”
Investigators will analyze samples from well-characterized groups, including children, the elderly, and people with autoimmune diseases such as lupus. These groups represent diverse populations with respect to age, genetics, gender and ethnicity. The research teams will examine immune system elements of these populations before and after exposure to naturally acquired infections or to vaccines or vaccine components. The profile that will emerge of the body’s response to vaccination will be based on the most sophisticated and comprehensive assays currently available. This will enable new approaches to examining vaccine safety, not just of individual vaccines but of the processes of immunization in general.
Their studies will focus on immune responses to vaccines against specific viruses and bacteria, such as influenza and pneumococcus, as well as to infection with West Nile virus. The investigators will take advantage of technological developments and advances in creating databases and developing mathematical models to identify and analyze the complex changes in immune profiles.
Each awardee will contribute to the establishment of a centralized infrastructure to collect, characterize and store human samples and analyze the large data sets that will be generated. Eventually, the centers will gather the information from this effort into a centralized Web-based database they will make available to the scientific community to promote and support human immunology research.
“This research effort represents a major expansion of efforts to define the principles of human immune regulation, instead of relying on findings from animal models that have limitations and cannot always be extrapolated to people,” says Daniel Rotrosen, M.D., director of the Division of Allergy, Immunology and Transplantation at NIAID. “The knowledge gained also will improve our understanding of the range of vaccine responses in particular subpopulations, including newborns, young children, the elderly, patients taking immunosuppressive medications and those with underlying diseases of the immune system, such as allergy and autoimmune diseases.”
The following six core institutions and principal investigators will participate in the inaugural program:
Baylor Research Institute, Dallas – Jacques Banchereau, Ph.D.
Dana-Farber Cancer Institute, Boston – Ellis Reinherz, M.D.
Emory University, Atlanta – Bali Pulendran, Ph.D.
Mayo Clinic, Rochester, Minn. – Gregory Poland, M.D.
Stanford University, Calif. – Mark Davis, Ph.D.
Yale University, New Haven, Conn. – David Hafler, M.D., and Erol Fikrig, M.D.
A portion of the funding for the centers will be dedicated to support smaller studies proposed by investigators outside the program, including pilot projects, the development of research resources and clinical studies.
The activities described in this release are being funded through the American Recovery and Reinvestment Act. More information about NIH’s Recovery Act grant funding opportunities can be found at http://grants.nih.gov/recovery/. To track the progress of HHS activities funded through the Recovery Act, visit www.hhs.gov/recovery. To track all federal funds provided through the Recovery Act, visit www.recovery.go
NIAID conducts and supports research—at NIH, throughout the United States, and worldwide—to study the causes of infectious and immune-mediated diseases, and to develop better means of preventing, diagnosing and treating these illnesses. News releases, fact sheets and other NIAID-related materials are available on the NIAID Web site at http://www.niaid.nih.gov.
National Institutes of Health (NIH)—The Nation's Medical Research Agency—includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.
14. Vaccine refusals are on the rise
Amid whooping cough epidemic, health officials are pushing for more inoculations
BY HELEN GAO, WATCHDOG INSTITUTE
Getting inoculated for diseases such as whooping cough and measles used to be a childhood rite of passage that few questioned. Now with shifting parental attitudes about vaccine safety, a growing number of California children are entering kindergarten without shots.
The trend worries public health officials because of the link between immunization rates and infectious outbreaks. As they grapple with the worst whooping cough surge in half a century, they are fighting back with outreach campaigns to promote vaccinations.
The Watchdog Institute, a nonprofit investigative journalism center based at San Diego State University, found that waivers signed by parents who choose to exempt their children from immunizations for kindergarten enrollment have nearly quadrupled since 1990. California allows parents to opt out of some or all shots on the basis of personal beliefs, be it religious objections or distrust of the medical establishment.
The institute’s analysis also revealed that San Diego County’s exemption rate has been consistently higher than the state average over the past two decades.
“Un-immunized people in general contribute to any disease rates. As the rates of un-immunized kids go up, we are inevitably going to see more and more outbreaks of diseases,” said Mark Sawyer, a pediatric infectious disease specialist at Rady Children’s Hospital in San Diego.
The institute examined 20 years of county-by-county records and two years of school-by-school data from the California Department of Public Health to find:
• Personal-belief exemptions granted to entering kindergartners reached a record high of 10,280 in public and private schools statewide last fall, up from 2,719 in 1990.
• San Diego County’s exemption rate is 2.64 percent, compared to 2.03 percent statewide. While those percentages seem small, public health officials are concerned that unvaccinated children tend to cluster in certain areas, creating pockets of vulnerability.
• Schools with the highest exemption rates tend to be private schools, public charter schools, and traditional public schools in affluent areas. Among schools with 25 or more kindergartners last year, 14 had immunization opt-outs for more than 15 percent of their kindergarten class. The top was the Waldorf School of San Diego in City Heights, at 51 percent.
Exemptions have drawn renewed scrutiny with each new report of measles or whooping cough, also known as pertussis. More than 3,000 cases of whooping cough have been confirmed statewide this year, with eight infant deaths. San Diego County reached an all-time high of 384 cases last week. This year, California has had 19 cases of measles as of Aug. 17, compared to nine for all of 2009.
Some medical experts believe that parental refusal of vaccines plays a contributing role in the whooping cough epidemic, and they want to see the exemption procedure changed. But even those who are fully vaccinated can catch it because their immunity wears off over time.
A bill is pending in the state Legislature to require booster shots for students in grades 7-12 starting Jan. 1. Opt-outs would still be allowed under this legislation.
The institute’s analysis found five of the ten counties with the highest incidence of pertussis as of Aug. 17 had above average exemption rates in 2009, while the other five were below average. Marin County, where 7.13 percent of the kindergartners had waivers last fall, tops the chart in the number of cases in relation to its population. Fresno, which had a 0.98 percent exemption rate last fall, also has a very high concentration of cases.
Multiple scientific studies have established correlations between geographical clusters of vaccine refusers and whooping cough and measles outbreaks throughout the country.
For each one percent increase in exemptions at a school, the risk of having a pertussis outbreak went up by 12 percent, a 2000 study in the Journal of the American Medical Association found. The study also found that at least 11 percent of the vaccinated children in measles outbreaks were infected through contact with somebody who was exempt.
Parents like Lara Hayes of Cardiff aren’t convinced vaccines are necessary. The mother of two children, ages 5 and 2, with another baby on the way, believes breast-feeding her children and raising them with proper nutrition and plenty of exercise are the better ways to protect them.
“If you are going to take responsibility for your children, you’ve got a right to say. ‘I don’t want to vaccinate,’” said Hayes, a former registered nurse who home schools.
Sawyer said parents who choose not to vaccinate are not just making an individual decision, they are making a community decision.
“You can choose to not put your child in a seat belt. All that’s going to happen is he might get injured,” he said. “But if you let your kid get measles, and it somehow spreads to another kid, and that kid dies, you have a direct role in putting that child at risk.”
Rebecca Estepp of Poway, a mother of two boys 12 and 10 years old, is familiar with that logic, but she cannot square it with her maternal instinct.
After her first son suffered adverse reactions from vaccines and developed autism, she decided to not to go through with the full schedule of immunization for her second son.
“I don’t know if there is an acceptable level of collateral damage in the war against infectious diseases,” said Estepp, who is also the government and media relations manager for SafeMinds, a nonprofit that investigates the link between vaccine ingredients and neurological disorders.
Like Estepp, Yvonne Haines of Serra Mesa perceives the risks of vaccinations to be far greater than the benefits. Her younger son, 15, and three of her grandchildren 5 to ten years old have either had no vaccinations or just a few of them. Based on her research, she’s convinced that it’s better for children to develop immunity naturally from being exposed to diseases like chickenpox.
“We do find that the unvaccinated kids are extremely healthy because their bodies have been allowed to develop their own immune system, rather than relying on vaccinations, which are like substitutes,” she said.
Public health officials emphasize that extensive research has debunked the connection between autism and vaccinations. They warn that some diseases, such as measles, can cause serious harm in unvaccinated children, including brain swelling and pneumonia.
This year, three children in San Diego County who were unvaccinated by choice have come down with measles, including one toddler from Solana Beach this month.
In 2008, an intentionally unvaccinated 7-year-old boy sparked the largest measles outbreak in the county in 17 years. The boy, who contracted the disease during a trip to Switzerland, attended San Diego Cooperative Charter School, where 20 percent of kindergartners that year had immunization waivers. The exemption rate there remained at 12.5 percent, last fall.
“The 2008 measles outbreak did not create a significant shift in immunization rates among our student population,” said Principal Wendy Ranck-Buhr. “There are strong emotions on both sides.”
HOT SPOTS
Among schools with 25 or more kindergartners last year, here are the ones with more than 15 percent using immunization waivers:
Waldorf School, 51%
California Virtual Academy @ San Diego (Spencer Valley), 45%
Greater San Diego Academy (Jamul-Dulzura), 39%
Dehesa Charter School (Dehesa), 33%
Xara Garden (Lakeside), 31%
Julian Charter (Julian), 30%
Chabad Hebrew Academy, 28%
Horizon Prep, 23%
Soille San Diego Hebrew Day, 22%
Iowa Street School (Fallbrook), 20%
Encinitas Country Day, 20%
Learning Choice Academy (San Diego), 19%
California Avenue Elementary (Vista), 17%
Classical Academy (Escondido), 16%
Source: California Department of Public Health. (For public schools, district is shown in parentheses.)
She noted that many parents who sign waivers still partially vaccinate their children.
Schools that top the list of highest exemption rates in the county in 2009 are almost all either private or charter schools. The private Waldorf School of San Diego, where tuition ranges from $7,500 to $14,000 a year, has the highest exemption rate.
“Our parents are really educated. They are trying to make their own decisions, not being influenced by pharmaceutical companies,” said Johannes Lasthaus, Waldorf’s administrator.
His school, he noted, has had no outbreaks and maintains a policy of keeping sick children at home.
“It’s all about people’s right to choose what is right for their child and their family and really respecting people’s choices, whether they choose to vaccinate or choose not to vaccinate,” said Julie Joinson, Waldorf’s director of admissions, speaking for herself. She noted that her daughter, 14, who has never been vaccinated, is “super healthy.”
“It’s not that I think that vaccinations are terrible,” Joinson said. “If I lived in a third-world country with open sewage running down the streets, I would probably vaccinate my child. At this point, I really have concerns about what goes into vaccinations.”
California is one of 48 states that allow nonmedical exemptions. Parents sign a form stating that “some or all immunizations are contrary to my personal beliefs.” Other states, such as Wyoming and South Carolina, require notarized statements.
States with easy exemption procedures were associated with a 90 percent higher incidence of pertussis compared to states with difficult procedures, according to a 2006 study in the Journal of the American Medical Association.
Many public health officials believe California’s waiver process needs to be revamped so that parents understand the full implications of opting out.
Robert Benjamin of Alameda County, who chairs a committee on personal belief exemptions for the California Conference of Public Health Officers, wants to see the waiver language changed.
He would like the statement to read something like this: “By declining these immunizations, I understand that not only do I put my child’s health at risk but also the health of others.”
That type of language, he believes, would foster “social consciousness.”
It’s up to the state Legislature and the state Department of Public Health to make the change to exemption procedures but neither has plans to do so.
Fred Schwartz, public health officer for Marin County, which has one of the highest exemption rates in California, said the whooping cough epidemic provides a prime opportunity for lawmakers to re-examine the exemption policy.
“I think many public health officers would like to see things like a requirement to have more education offered to the parent in order for them to be able to make the decision to do a personal belief exemption,” Schwartz said.
He believes exemptions are a contributing factor to the pertussis epidemic but not a primary cause, as 91 percent of the 5- to 10-year-olds in Marin who contracted whooping cough were vaccinated. Many were in higher elementary grades, at which immunity from the vaccine begins to wane.
For many years California’s overall exemption rate was below one percent but in the last decade, the numbers started to climb steadily.
Much of the blame is directed at discredited British doctor Andrew Wakefield for linking autism to the vaccine for measles, mumps and rubella. His research was endorsed by celebrities such as Jenny McCarthy and Jim Carrey. It was also widely disseminated through the Internet, where a plethora of websites and blogs focus on vaccine problems.
“We’ve just got this perfect storm of a lot of information — some accurate, some not — mistrust of government and not seeing these diseases and not feeling like they are at risk,” said Catherine Martin, director of the California Immunization Coalition, a group that works to increase vaccination rates.
In the last few years, vaccine advocates have pushed back with Internet and traditional advertising campaigns of their own.
The “Why I choose” and “Shot by Shot” campaigns sponsored by the coalition and the California Department of Public Health feature testimonies by those who have chosen to vaccinate and stories of families and individuals who have suffered from vaccine-preventable diseases.
“The people who are personal belief exemptors, I don’t think, have seen polio,” Benjamin said. “I don’t think they have seen widespread measles. They certainly haven’t seen diphtheria. Aren’t these diseases of the past?
“Well, almost, but not quite.”
