UPDATE: The person whose name has been bandied about is NOT the person in the photo. We have confirmation of this. Please put down the pitchforks before someone puts an eye out. His rude gesture isn't appreciated by any of us. It's puerile at best. Obnoxious too. I suppose his fight or flight kicked in and he chose.... finger. Protests trigger anger all around. We are a community near the brink in many ways.
Onward with our mission. The real culprits are safely ensconced in corner offices.
UPDATE: The person whose name has been bandied about is NOT the person in the photo. We have confirmation of this. Please put down the pitchforks before someone puts an eye out. His rude gesture isn't appreciated by any of us. It's puerile at best. Obnoxious too. I suppose his fight or flight kicked in and he chose.... finger. Protests trigger anger all around. We are a community near the brink in many ways.
There's still time to register for the Autism Education Summit in Dallas September 29 - October 2. Check out the keynote panel! Registration costs just $89 and includes all of this! Click here for details.
• Access To All Summit Lectures
• Access To Saturday Night Hope for Recovery Party
• Complimentary Coffee and Tea Throughout the Event
• Gift Bag with Products, Conference Program Guide and Vendor Coupons
From our friends at Safeminds:
The time is now to take action to protect our families—H.R. 4919, Kevin and Avonte’s Law of 2016, addresses wandering incidents and fatalities in children with developmental disabilities. If passed the bill would:
- Ensure that grants from the U.S. Department of Justice can be used by state and local law enforcement agencies and nonprofits for education and training programs to proactively prevent and locate missing individuals with autism and other developmental disabilities.
- Make resources available to provide first responders and other community officials with the training necessary to better prevent and respond to these cases.
Kevin and Avonte’s Law passed by unanimous consent in the U.S. Senate in July. It is critical the bill gets the attention it deserves as soon as possible—we are hoping it is passed in early September. So here’s what we need you to do:
Contact your Representative and ask him or her to co-sponsor H.R. 4919 today. Here are the main points for you, and feel free to add your own personal reason for calling:
- I am calling/writing to ask you to co-sponsor Kevin and Avonte’s Law, H.R. 4919.
- If enacted, H.R. 4919 would help families like mine, and would work to keep children with autism — and other developmental disabilities — safe.
- Thank you for helping to protect some of our nation’s most vulnerable citizens.
With your help and a donation, SafeMinds can make a positive impact on the lives of individuals and families living with autism. Thanks for your time and treasure! To donate to SafeMinds, click here.
From Generation Rescue:
We're excited to announce that Jacqueline and Chris Laurita will once again be joining us on Friday, June 24th for the 8th Annual Rescue Our Angels.
One of the original ladies of The Real Housewives of New Jersey, Jacqueline Laurita is a revered TV personality, mom, wife, philanthropist, and businesswoman. She is returning to the cast this year and the new season debuts on July 10th. Jacqueline is also the co-author of two books, Get It! A Beauty, Style and Wellness Guide To Getting Your 'It' Together, available now and Defy Expectations, coming this fall and written with her husband, Chris, on their struggles and successes while raising a child on the Autism Spectrum, with secrets to keeping their marriage strong.
A mother to Ashlee, 25, CJ, 14 and Nicholas, 7, Jacqueline is a Warrior Mom and has been a celebrity ambassador to several non-profit Autism organizations, since Nicholas was diagnosed. She regularly travels the country as a sought-after public speaker raising Autism awareness. Her mission is not only to help her youngest son reach his full potential, but to also help as many families as she can along the way.
Jacqueline and Chris are amazing parents and we're so thankful that they will be supporting Rescue Our Angels again this year! Time is running out to get your tickets as sales end at midnight on June 20th. Please visit www.RescueOurAngels.com to buy your tickets or make a donation.
Download the video podcast here. Ms. Wiederlight’s testimony starts at 03:26:00
SafeMinds Executive Director Lisa Wiederlight testified in front of the Interagency Autism Coordinating Committee (IACC) in January to ask its members to immediately establish the four work groups SafeMinds recommended at the November 16, 2015 meeting. The work groups are:
1) Environmental Factors that May Underlie the Rise in Autism Prevalence
2) Co-occurring Conditions with Autism
3) Autism and Wandering
4) Caregiver Support
Ms. Wiederlight’s full testimony is below:
My name is Lisa Wiederlight. I am the mother of a 15 year old son with autism, and executive director of SafeMinds, a national nonprofit organization whose mission is to end the autism epidemic by promoting environmental research and effective treatments.
In November, I asked this Committee to form four workgroups to address the urgency of the autism crisis. I am told that you must begin to formulate a Strategic Plan immediately, and so I ask that these workgroups are established today, to inform the Strategic Plan document. The four workgroups are: (1) Environmental Factors that May Underlie the Rise in Autism Prevalence; (2) Co-occurring Conditions with Autism; (3) Autism and Wandering; and (4) Caregiver Support.
Workgroup 1: the Environment. Autism is an urgent issue for this country—in terms of the safety, health, and welfare of people with autism and the skyrocketing costs to American taxpayers. As you know, autism prevalence has increased from 1 in 88 in 2012 to 1 in 45 in 2015, according to the U.S. Centers for Disease Control and Prevention. With a number of potential environmental causes tentatively identified scientifically but no policy in place to utilize these findings for prevention, it is unlikely this number will cease its downward spiral anytime soon.
Albert Enayati, co-founder and board member of SafeMinds, testified in front of the Interagency Autism Coordinating Committee (IACC) at its January 2016 meeting, to support SafeMinds' recommendation of forming a workgroup on co-occurring conditions with autism. He stressed that there "is an urgent need for a workgroup to follow promising treatment leads, shepherd existing treatments through clinical trials and facilitate FDA approvals and/or mainstream acceptance."
His full testimony follows:
My name is Albert Enayati. My son regressed into autism after receiving seven vaccines in the space of two days.
Today, I would like to expand on the SafeMinds recommendation to establish a workgroup under the IACC to investigate co-occurring conditions. Many of the most disabling or fatal features that are present in a person on the spectrum are co-morbid conditions. These conditions are amendable to treatment. There is an urgent need for a workgroup to follow promising treatment leads, shepherd existing treatments through clinical trials and facilitate FDA approvals and/or mainstream acceptance. This group would require membership from within the committee as well as significant representation from the broader autism advocacy and research communities. An example is Isaac Kohane, MD of Harvard Medical School[i] who was invited to speak to the IACC in the past and who has the knowledge to advise IACC on this topic. Over the history of the IACC, there has been no coordinated effort to develop treatments for people on the spectrum.
Despite 1.6 billion dollars in spending, parents still have few options that have been proven effective. Risperdal and Abilify are only appropriate for certain symptoms and have significant side effects. We can and must do better. In 2015, researchers at Johns Hopkins University Medical School in collaboration with Massachusetts General Hospital for Children determined that chemicals extracted from broccoli sprouts may help ease autism symptoms[ii] . In another published paper, researchers at Stanford University found that symptoms of autism can be caused by a gene mutation that both blocks the body's natural production of endocannabinoids and also interferes with the way cannabinoids communicate with the brain[iii]. These leads need immediate follow-up and there is currently no mechanism to ensure this.
There are existing medications such as antibiotics, pioglitazone (Actos), and naltrexone that need further study in autism. In addition, there are vitamins and supplements such as folinic acid, melatonin, methyl B-12, carnitine, folinic acid, probiotics and tetrahydrobipterin that have preliminary evidence of efficacy, but need further study. Lastly, many psychiatric medications are prescribed off-label for those with autism despite lack of properly controlled clinical trials and long-term safety studies in this population. A toll-free number and the IAN surveys should be used to collect community input on treatments to be investigated and to report side effects as a way to include the broad community's input. All of these areas need the concentrated attention of a dedicated workgroup to move the research forward. Perhaps most importantly, this workgroup should play a key role in identifying the biomarkers associated with various comorbidities, assessing what treatments might help, and shepherding these treatments through clinical trials. For example, someone with a co-occurring phenotype of PANDAs and tics will have an underlying immune problem (biomarker) and can be treated with an existing and validated intervention (IVIG) for PANDAS. Or, someone with co-occurring irritability and glutathione imbalance can be helped by N-Acetyl Cysteine treatment. We need to investigate broadly what differentiates the biology of people with autism compared to controls and pursue treatments that make sense. Related to all of this, I must draw attention to the fact that the IACCs database of published research in autism is now ridiculously out of date[iv].
Read the full post here.
For those of you who are unfamiliar with Lyn Redwood, she is a Nurse who sounded the alarm on the number of micrograms of mercury being injected into babies, including her son, when industry, government agencies and the pediatric community had failed to do the same. The result was the beginning of the biomedical autism movement really. She recently was a member of IACC - which had to have been akin to sleeping on a bed of nails - with grace and tenacity. Learn more about Lyn's decades long contribution to helping our kids and the history of our community in David Kirby's book Evidence of Harm.
Below is an excerpt from the SafeMinds site - please read the full article here.
SafeMinds co-founder and board member Lyn Redwood spoke at last weekend’s Truth, Transparency & Freedom Rally. Read her moving account of decades of Federal inaction on vaccine harms – and her personal triumph helping her own son lead a successful life beyond autism.
My name is Lyn Redwood. I have a master’s in nursing and worked for years as a nurse practitioner in obstetrics, gynecology, and pediatrics. I co-founded the nonprofit organization SafeMinds in 2000 and the National Autism Association in 2003, and I have been fighting on behalf of families affected by autism for over 15 years.
My youngest son weighed in at almost 9 lbs at birth. He was a strapping, happy baby who smiled, cooed, walked, and talked all by one year. Shortly after his first birthday we started to lose him. Suddenly my active, healthy baby was sick all the time. He had back-to-back colds, ear infections, and even strep throat. All he wanted to do was to sit in front of the TV and watch the Disney movie, “The Fox and the Hound,” over and over again. And he would cry inconsolably if you interrupted his routine. He stopped interacting with us, he refused to eat most foods and suffered intermittent bouts of diarrhea. He also lost all the words he had been saying and the twinkle in his eye was gone too. Something was horribly wrong with my beautiful baby boy.
At first he was diagnosed with a global receptive and expressive speech delay. Typanostomy tubes and aggressive speech therapy did nothing to help him recover his speech. Then he was diagnosed with autism.
SafeMinds Review of Autism-Like Outcomes from Vaccinations in a Non-Human Primate Model
Findings identify distortion in public reporting and argue need for full disclosure of study documents.
Does published research always reflect the truth? A research paper came out last month in the prestigious Proceedings of the National Academy of Sciences with this title: Administration of thimerosal-containing vaccines to infant rhesus macaques does not result in autism-like behavior or neuropathology. The paper, by Bharathi Gadad, Laura Hewitson and colleagues, concluded that "administration of TCVs and/or the MMR vaccine to rhesus macaques does not result in neuropathological abnormalities, or aberrant behaviors, like those observed in ASD."
This paper was preceded earlier this year by another based on the same primate model of vaccine administration and autism and was led by the same primary investigators. It too was published in a prestigious journal, Environmental Health Perspectives. It also "provided no consistent evidence of neuro-developmental deficits or aberrant behavior in vaccinated animals."
Pretty strong conclusions. Case closed, no? Well, not so fast. The Medical literature is rife with misreported investigations and selective reporting. What is published in journals is only a small piece of the entire body of any investigation's work, and some investigations are not published at all, so a large part of the evidence base may remain largely invisible to the scientific community or to the public. What's ultimately published may reflect bias, intentional or not.
SafeMinds partially funded this investigation of vaccine administration and autism-like outcomes in a non-human primate model. We have been following it since its inception in 2003, have had regular internal updates from and interaction with various investigators, and have read all the public documents that have appeared from this decade-long, complex placebo-controlled experiment. Based on our knowledge, SafeMinds has serious concerns about the validity of the conclusions of the two most recent papers. Read the full article at SafeMinds.
From our friends at Safeminds:
Wednesday afternoon we got a voicemail from a reporter at Newsweek asking SafeMinds how much money we spent on a primate vaccine safety study that was just published in the Proceedings of the National Academy of Sciences. We weren’t sure why Newsweek wanted this dollar figure, and what relevance it had in the endless mudslinging in the vaccine-autism debates.
We sent the reporter this following statement:
“The epidemic of autism is expected to cost the country $1 trillion by 2025 if prevalence trends continue. In a recent study, over 40 percent of parents agree or strongly agree that vaccines played a part in the development of their children’s autism. The vaccine primate study in question consisted of multiple phases. The initial phase found a series of negative effects in infant reflexes and brain growth among those exposed to vaccines. The second, recent phase purported to find no effect. SafeMinds has concerns about changes in the study design protocol and analysis that may have led to these contradictory results. We are in the process of collecting and reviewing additional information regarding this study.”
The reporter, Jessica Firger, told us she was delaying her article until she could speak with us directly about the statement. We thought this was a good sign, so Thursday afternoon my colleague and SafeMinds Board President, Sallie Bernard, and I spoke with Firger for about 20 minutes by phone.
From our friends at SafeMinds.
SafeMinds is delighted that several candidates for president of the United States have been speaking out on national television about the epidemic of autism in our country, as well as the choice that some parents and medical professionals are making to slow down and spread out the administration of childhood vaccines. Autism prevalence rates have skyrocketed since the 1980s. Prior to that decade, autism was reported to affect 1 in 2,000 children(1). Now, the data show that 1 in 68 children has been diagnosed with an autism spectrum disorder (ASD) (2).
The autism epidemic continues to escalate unchecked as indicated by the latest California prevalence numbers (3), and it must receive the priority it deserves so that we can better protect children born today. A new study from the University of California-Davis estimates that autism will cost the United States $268 million in 2015, and this number is projected to increase to $1 trillion by 2025 if prevalence trends continue(4). This is far more than Alzheimer’s is expected to cost(5).
While autism is not new, the explosion of environmentally-induced brain disorders is unprecedented. Independent scientists have confirmed what classroom teachers and parents already know—the increase in autism is not just a question of better diagnosis or more awareness. Rather, it is also the result of something environmental, or perhaps several environmental factors, causing harm to children’s brains(6). Autism is one of the major crises of our time.
From our friends at SafeMinds. Read the entire article at the SafeMinds site.
"Acetaminophen as a cause of the autism pandemic? It makes absolutely no sense … at first."
Dr. William Parker
My research looks at what causes harmful inflammation in people in Western societies. The triggers of inflammation are recent developments in human history, appearing after the agricultural revolution only 10,000 years ago. Most did not appear until just a few decades ago, as we entered the post-industrial age . My favorite example is the loss of biodiversity from the human body. Humans have always been bathed inside and out with bacteria, viruses, fungi, worms, and other organisms, but in recent decades our bodies' ecosystems have become much less diverse, to our detriment.
Inflammation can be described simply as an aggressive immune response. It's not a bad thing, and in fact is necessary under certain circumstances. However, inflammation in Western society has gotten out of control, resulting in pandemics of allergies, autoimmune conditions, and increased rates of cancer.
SafeMinds joins the autism community in mourning the death of Dr. Jeff Bradstreet. Jeff was remarkable. Always working so hard for our autistic children, recognizing that they suffered from comorbid conditions long before the medical establishment. You see, Jeff was one of us, a parent of an autistic child. He understood our heartbreak, our hope, our struggles, and our happiness over the “small” things: a new word, better behavior for one day at school, more smiles indicating our child felt better… a brown, formed poop. He rejoiced when we rejoiced. With his death, there is a hole left in the universe; and a Grand Canyon sized gap in the autism community.
Jeff wasn’t just an autism clinician treating our kids. Following a protocol that seemed to work for one child, then forcing our children’s square needs into round holes. He searched for answers for every child’s medical needs knowing that every child was an individual.
Jeff was a thinker… always making things happen. Publishing science. Understanding that every research paper adds to the knowledge needed to tackle and stop the autism epidemic. He collaborated with so many other doctors in the US and other countries, continuing the vision of Dr. Bernie Rimland, who wanted autism doctors to share their knowledge of what was working.
Duke University Study Finds Helminths are Beneficial to the Gut Biome Promoting More Good Bacteria and Less Bad
From our sponsor Safeminds:
Durham, NC — The idea that loss of species diversity from the ecosystem of the human body is leading to inflammation and disease is gaining widespread acceptance. This loss of diversity, known as “biome depletion”, is caused by a variety of factors in modern society and has an effect on every aspect of our body’s development and function, including our brain’s development and function. Most attention among scientists and the media alike has focused on the microbiome, the microorganisms or germs in our biome. However, a substantial body of experimental evidence points toward the presence or absence of larger organisms, helminths or worms, as having a generally more global effect on the body’s function, including alteration in the microbiome.
In a recent study funded in part by SafeMinds and published in the journal Gut Microbes , a team of investigators at Duke University asked what effect the addition of worms to a rat’s biome would have on the rat’s gut bacteria. Would the helminths affect the gut microbiome or would the microorganisms remain blissfully ignorant of the worm’s presence?
Read more here.
This ad is running in the Sacramento Bee today. Go to YourFamilyYourChoice.org to learn more.
Poll Shows 72% of Californians Think Parents and Doctors—Not Politicians Should Make Decisions About Vaccinating Children
SACRAMENTO, CA—Survey USA released new poll results today showing the majority of California residents believe parents and doctors, and not bureaucrats at the State Capitol, should make vaccination choices. SB277 (Pan/Allen) eliminates the Personal Belief Exemption for vaccination, and would deny a child the right of a classroom education if their parents chose to exempt them from one, some or any of California's state-mandated vaccines.
Opposition to this bill has reached record numbers. More than 1000 concerned California parents have shown up to express their opposition during recent Health and Education Committees hearings, many making trips multiple times from all over the state.
“Bills like SB277 are dying all over the country because this is America and we value freedom. In recent weeks, Oregon, Washington, Maryland, North Carolina, New Mexico, Illinois and Texas realized their proposed bills like SB277 were far too draconian to impose on their citizens. Those bills died. Is California going to join ranks with only Mississippi and West Virginia and be the third state that does not value parental choice,” asked Jude Tovatt of the California Coalition for Health Choice.
DURHAM, N.C. – A growing body of evidence in the medical community holds that greater diversity of bacteria and even worms in the digestive tract offers protection against a variety of allergic and autoimmune problems.
Germs from healthy people can be used to heal people with digestive disorders and other conditions caused by the loss of their own germs, and worms that live in the gut, called helminths, have shown success in quelling inflammatory diseases.
With this in mind, researches at Duke Medicine hypothesized that enhancing biodiversity in laboratory rats, including treating the rats with worms, would suppress their immune systems. Because worms have been shown to subdue inflammatory diseases such as asthma and allergies, the thinking was, the treated immune system would not fight infections as effectively.
Actual findings were quite the opposite. Researchers found enhanced rather than suppressed immune function in animals with increased biodiversity.
Publishing online in the April 8, 2015, issue of PLOS ONE, the findings add to the growing understanding of the complex environment in the digestive tract and its role in maintaining health.
“We were surprised – we thought enhancing biodiversity would make the animals more immune-suppressed,” said senior author William Parker, Ph.D., associate professor of surgery at Duke. “But it appears that at the same time we enhanced the biodiversity in a way that should suppress allergy and auto-immunity, we also enhanced the immune response to a variety of stimuli.”
Facebook is abuzz with posts about autism awareness. Buildings are lighting up in blue to show support for autism, while Twitter is chirping with the hashtags #autism and #awareness. There are hundreds of events around the country celebrating that more and more people know what autism is. Frankly, I think you’d have to be a hermit not to have heard of autism by now. The problem is that nobody seems concerned about how common autism has become.
I’m still waiting for the part where our government and the general public wake up and realize that what was considered a “rare disorder” when my boys were diagnosed 14 years ago, is now affecting children in every neighborhood in America.
Actually, in my neighborhood, counting my boys, there are eight kids on the spectrum. Eight children! And only one is high-functioning enough that you wouldn’t immediately know he’s on the spectrum. The general disregard for the increased numbers of people with autism baffles me. It is, as my son Don would say, an “Epic Fail! “
What are you doing for April Autism ACTION month in honor of someone you love with autism!? Blue buildings to raise money for seminars on how to raise money from autism doesn't cut it with AofA or our friends at GR.
Go to www.generationrescue.org
Print out a form
Choose something to "give up" for April
Post a selfie on social media holding the form with your ACTION using hashtag #ChatAutism
Donate to the Grant program each time you are tempted or..... give in to temptation!
SafeMinds is excited to announce that the digital download and DVD release of Trace Amounts will be available on Thursday, April 2nd, World Autism Awareness Day!.
Trace Amounts is a compelling documentary that tells the story of one man's journey (Eric Gladden) coping with the neurological effects of mercury poisoning that he believes resulted from a vaccine containing the mercury-based preservative thimerosal.
The mission of Trace Amounts is to educate the world on the dangers of mercury and to eliminate mercury-based products and manufacturing processes immediately and responsibly, starting with the removal of mercury from all medical products.
We need your support in sharing Trace Amounts with your friends and family in an effort to protect them from the harm that was inflicted on Mr. Gladden; help educate our community with the right science and get them involved to take positive action.
As a Trace Amounts Coalition Partner, SafeMinds will receive a $1.00 donation for each copy purchased. So please us the promo code TASAFE when you purchase to support SafeMinds. Digital Downloads and DVD purchases will be available April 2nd at TraceAmounts.com.
Thank you to our friends at Lee Silsby Compounding Pharmacy for providing the Folinic Acid for this clinical trial.
Researchers at Arkansas Children's Hospital Research Institute, in conjunction with the Rossignol Medical Center and Driscoll Children's Hospital, are conducting a study looking at the effects of Folinic Acid on language in Autism Spectrum Disorder and language impairment. The study has 3 phases. Phase 1 confirms that your child has language impairment (there is no compensation for this visit). If language impairment is verified in the phase 1 screening, then your child will be eligible for phase 2. Phase 2 consists of receiving 12 weeks of folinic acid or an inactive placebo, in addition to several evaluations of your child's abilities and a single blood test. Children that complete phase 2 will be eligible for a 12 week open-label trial of folinic acid which is phase 3.
By Lyn Redwood
I’ve blogged about the one-sided and exaggerated media coverage of the measles before. My colleagues and I are used to name-calling. But the hate circulating on the Internet and in mainstream newspapers about measles this week has escalated so much that even I am in shock.
In case you missed it, there is an article in USA Today claiming that non-vaccinating parents should be jailed and a Forbes opinion piece suggesting lawyers should sue parents whose children are not vaccinated against the measles.
The mainstream is actually endorsing and promoting the idea that we should put parents in jail, take their children away from them, and vaccinate the children against their parents’ best judgment. In America, not Stalin’s Soviet Union. Read the full article at Safeminds.org.
Those of you who are fairly new to the Age of Autism family might not know our history, particularly our history with our sponsor Generation Rescue. The "prototype" AofA was a blog called "The Rescue Post," and it was launched by JB Handley and GenRescue. Dan Olmsted and Mark Blaxill formed Age of Autism and rolled in Rescue Post, thus a star was born! GR, like each of our sponsors, and like all of the most effective autism orgs, runs lean and mean and provides immediately accessible information and services to families. You could say the walk they walk without the walk..... From GR:
"Today is "#GivingTuesday, a day for donations. And while we know that all of us run on tight budgets, if you have family and friends who are looking to donate to an autism organizations, we hope you might suggest Generation Rescue as a wise choice.
You already know Black Friday. You've probably heard of Cyber Monday. Now we want to introduce to you: #GivingTuesday!
On Tuesday, December 2, 2014, charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give.
This year, join us and give hope to families affected by autism."
It’s bacteria (Streptococcus pyogenes), after all, that cause strep throat.
And bacteria (E. coli) that cause urinary tract infections.
And bacteria (Salmonella) that cause food poisoning.
So, bacteria, of course, is bad.
The microbial world has been getting a bad rap for years.
But we humans have actually evolved to co-exist with bacteria.
Even more than coexisting, we humans are actually walking, talking microbial communities.
Bacteria is often beneficial
The bacterial cells in our bodies outnumber skin, blood, organ and other cells at least ten to one.
It’s not just that bacteria aren’t harmful. Bacteria are actually essential to our health. Bacteria and other microorganisms play a critical role in our survival.
Our skin, mouth, airways, gastro-intestinal and urogenital tracts all have microbial populations that co-exist and provide assistance to us. The microorganisms in our bodies help us digest our food, are a vital part of our immune system, and even help us grow.
Yet because of aggressive anti-bacteria health campaigns and propaganda and the relentless marketing of antibiotics (seen a hand sanitizer commercial lately?), we are actually threatening the environmental balance by creating antibiotic resistant superbugsand harming human health.
On October 4, 2013, Avonte Oquendo eloped from his autism school in Queens, New York and vanished into thin air. His remains were found in January, in the icy waters of The East River.
Avonte was just one of many children, from tots to teens, who has died as a result of his or her autism. Safety is of paramount important in our community. There are orgs trying to promote safety, encourage programs and spread the world that autism is indeed deadly - from the outside in, which is to say, every bit as deadly as some cancers.
Our friends at National Autism Association are leading the way in safety with their Big Red Safety Box program. That program is currently "open" for families to apply for a FREE safety kit. Kits are available on a first come, first served basis and include:
1) Our Get REDy booklet containing the following educational materials and tools:
A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter
A Student Profile Form
2) Two (2) Door/Window Alarms with batteries
3) One (1) RoadID Personalized, Engraved Shoe ID Tag*
4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband
Click HERE to apply for a kit or to make a donation to this life saving program. Thank you.
Congrats to Michael Bailey, Brooke Gorham, Real Tanner's Dad and Andrea Keller.
Contest is closed. Thank you.
Our generous sponsor Lee Silsby is offering four free bottles of Enhansa to AofA readers. Choose from 150 mg 150 cap bottle or Enhansa REPAIR anti-inflammatory support, 60 cap bottle.
Enhansa is a proprietary blend of curcuminoids derived from the rhizomes of Curcuma longa (Curcumin). It is the specific ratio of curcuminoids, along with the specialized method of extraction, which allows for the unique benefits of Enhansa as compared to other Curcumin products.
Some of the positive results have been mentioned in a recent 20-patient study on Enhansa and concurred by hundreds of practitioners that prescribe it on a daily basis to their patients. Take a look at some testimonials here.
Enhansa has been tested to be very low in oxalates and phenols. Each batch of Enhansa is tested for heavy metal content. The results of the testing show that most heavy metals are below the detectable limit, and those that are detectable exist at extremely low concentrations.
A large and growing body of research has been dedicated to the study of plant polyphenols and their anti-inflammatory properties. The findings have been very promising so far. As a result of this, Lee Silsby Compounding Pharmacy has developed Enhansa-Repair™, a proprietary blend of specialized extracts that aims to harness the significant potential of plant polyphenols to alter the inflammatory response.* Each ingredient used in Enhansa-Repair™ was chosen based on the following criteria:
A large body of research on the anti-inflammatory effects of the plant
A long history of medicinal use in humans, with low side-effect profile
The extraction process must yield an extract with high potency, absorption, purity, and standardization
Atlanta, GA — For over a decade SafeMinds has claimed that the CDC manipulated data to show no link between vaccines and autism. But at least for one study, the rumors were put an end.
In a statement, William Thompson, Ph.D. acknowledged that he and his co-authors “omitted statistically significant information” linking the MMR vaccine to an increased risk of autism in a 2004 study. An independent reanalysis of the same data suggests that African American males have a 340% increased risk of autism if they received the vaccine prior to 36 months of age. Thompson also admitted to a cover-up of the increased risk, stating, “Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.”
“This is the tip of the iceberg,” says Lyn Redwood, RN, MSN, Vice President of SafeMinds. “We have found problems with every result generated by the CDC claiming no autism-vaccine link. Sadly, their studies were utilized by the Vaccine Injury Compensation Program to deny restitution to over 5000 families whose children developed autism after vaccines.”
In 2004, CDC researcher Thomas Verstraeten published a study examining the mercury preservative thimerosal that had similar protocol manipulations. The first run of the raw data obtained by SafeMinds showed that children were 7.6 to 11.4 times more likely to have autism if they had high exposure to thimerosal-containing vaccines compared to no exposure. Four alterations of the data occurred until the final publication showed no statistically significant findings.
From our sponsor Safeminds.
Earlier today the Natural News outlet released a letter from alleged CDC whistle-blower Bill Thompson to the Director of the CDC Julie Gerberding, MD dated February 2nd, 2004.
In the letter, Dr. Thompson refers to several news articles that appeared in the media during that time regarding CDC vaccine safety research and letters that Congressman Dave Weldon, M.D. sent to Dr. Gerberding regarding concerns related to the integrity of the scientists in the CDC’s National Immunization Program (NIP).
SafeMinds worked closely with Dr. Weldon for several years during his time in Congress. We shared with his staff FOIA documents SafeMinds received from the CDC and FDA regarding issues surrounding vaccine safety and the use of thimerosal in infant vaccines. These documents include emails from NIP employees, officials at CDC, officials from FDA, representatives from the American Academy of Pediatrics, and the vaccine industry, as well as the original transcripts of the Simpsonwood meeting.
Here is the letter referenced by Thompson where Congressman Weldon asks Dr. Gerberding about the upcoming publication of a CDC study regarding the use of thimerosal in infant vaccines and associations with adverse neurological disorders. Dr. Weldon’s concerns stemmed from earlier versions of the research obtained by SafeMinds which documented numerous statistically significant relations between exposure to thimerosal containing vaccines and ADD/ADHD, speech and language delays, tics, neurodevelopmental delays in general, misery disorder, sleep disorders, and autism.
According to these emails and documents, scientists were well aware of the harm that was occurring. An article appearing in the National Journal by Neil Munro titled, “Missing the Mercury Menace,” which Bill Thompson also references in his letter to Dr. Gerberding, outlines the manipulations made to the VSD thimerosal data in an effort to reduce the statistically significant adverse neurological outcomes. Read the full post at the Safeminds site here.
Thank you to our friends at The Canary Party for allowing us to share this post from their website. This story is shocking on so many levels. And makes Ferguson, MO look like Mayberry by comparison. How many African American males' lives have been irrevocably altered by autism, becuase the CDC hid the data? Avonte Oquendo instantly springs into my mind. And a tall, handsome classmate of one of my daughters. And my friend Jane's beautiful son. Boys of color. Whose families might have been able to stave OFF autism - even their pediatricians might have thought twice about the timing of vaccines had they been privvy to data that was instead - sent to the "privvy." Thank you to Rob Schneider, a celeb who has questioned even the medications Robin Williams was on at the time of his suicide - asking tough questions and putting his career on the line - for the truth. Sure wish we could "copy" him.
Written by The Canary Party
Sunday, 24 August 2014 14:59
In light of the revelation that Dr. William Thompson, senior scientiest at CDC, has admitted guilt in hiding data that found that black males are 340% more likely to have an autism diagnosis when given the MMR before age 3, Rob Schneider has written to the office of the Governor of California, Jerry Brown, to assure himself that Brown is aware of the fraud, and to demand answers and actions to protect California children.
From: Rob Schneider
Date: Fri, Aug 22, 2014 at 10:20 PM
Subject: CDC Autism Whistleblower Admits Vaccine Study Fraud - CNN iReport
To: Lark Park, Deputy Legislative Secretary, Governor's office < Lark.Park@gov.ca.gov>
Dear Ms. Park,
This is Rob Schneider. I want to first thank you for calling me several years ago when Governor Brown signed into law AB2109, the requirement for all parents of school children to have to "be counseled" to get a Doctor's note in order to obtain a vaccine exemption to attend public school in California.
As you may or may or not know this has caused hardships all over the state as Doctors have refused to meet with parents who want the exemption form signed and families who have been threatened with or have been kicked out of medical practices for not going along with the exact Vaccine schedule, currently 49 shots of over 16 different Vaccines before the age of Six Years old. This in spite of a family's objections whose child may have had another sibling that had a bad reaction to a particular Vaccine.
This policy of one size fits all Vaccine schedule for every child is as absurd as giving the same eye prescription glasses to every child. The fact is EVERY CHILD IS DIFFERENT and there is currently NO SYSTEM or thought to which child could be more susceptible to adverse reactions including permanent injury and death from any Vaccine or Vaccine ingredients.
Since I have opposed this undemocratic and onerous legislation (and Law) from its inception, I have kept up on how it has affected families in California. Now there is more reason than ever to be concerned, even outraged, by the CDC and by AB 2109.
From our sponsor Safeminds.
By Eric Uram
In my 50 plus years on this planet, I’ve been to the dentist about 100 times. Routine stuff mostly; I’ve never had the same degree of problems our first president did (George Washington had notoriously bad teeth). All the pearly whites you see in my mouth are mine. Those dental visits—along with good oral hygiene, a decent diet, and good genetics—have kept me from the need for false teeth.
Yet I still have mixed feelings about the several times I spent with a drill whining in my ear as the dentist prepared a tooth for restoration to fix the damage caused by decay that had attacked the surface and was destroying the tooth. Without such a fix that decay could have damaged the root and caused even bigger problems—like having no teeth.
But during my childhood, and for over a century, the preference has been for using “silver” fillings to replace areas in a damaged tooth. Silver amalgams have been used in dentistry since before the Civil War. And this shiny metal material the dentist inserts into the area the drill removed is problematic, to say the least.
I didn’t find out until ten years after I had my first cavity filled that “silver” material is actually comprised of about 50% mercury.
Read the full post at the Safeminds site.
We're blessed in the autism biomedical community to have a range of choices in conferences. Old friends gather in the Windy City each Spring, on the sunny West Coast of Florida each November and now, in Dallas, Texas beginning this October with the inaugural Autism Education Summit. You'll see plenty of familiar faces and meet new friends and providers dedicated to helping every person on the spectrum achieve the best health and functioning.
Here's the schedule. Here is the current list of speakers including AofA's Mark Blaxill (stay tuned for more.)
Register with a friend or partner to save. (See registration rates below) Better yet - take advantage of the special group rate savings for TEN attendees who register together. This rate is for any group of ten and includes special bonus recognition at the conference. What a great way to acknowledge a local organization, school program, town support group or even a local treatment center in your area! Email info@autismeducationsummit for more info about creating your own group.
Join the Age of Autism team at The beautiful Fairmount hotel in the heart of downtown Dallas - meet old friends, make new friends - share your experience and take home medical expertise for your loved one on the spectrum.
• Access To All Summit Lectures
• Complimentary Coffee and Tea Throughout the Event
• Gift Bag with Products, Conference Program Guide and Vendor Coupons
People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities
We are reprinting this article by Tamie Hopp with permission. To view the original, please visit NPQ, The Non-profit Quarterly. If you have a child with autism or another disability, we suggest you join VOR (Vee-Oh-Are) an AofA sponsor and one of the only advocacy groups fighting for INDIVIDUALIZED housing and adult care. There are self-advocates and others who know nothing about the needs of our loved ones with autism who are seeking to deny choice. Learn more at the VOR site.
By Tamie Hopp
VOR Director of Government Relations & Advocacy
In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: "[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo."
The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) [later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID)].
Families and advocates alike applauded this infusion of federal funding, licensing and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).
Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options. In 1981 Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.
These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.”
The Pendulum Swings
Even though initial reforms were motivated by a lack of service options (an over-reliance on the ICF/IID program), it was not long before efforts to “rebalance” our system of care shifted from the expansion of options to the dramatic reduction of ICFs/IID and other specialized options.
In 1999, the Supreme Court handed down its landmark Olmstead v. L.C. decision which should have settled the deinstitutionalization debate. The Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings,” finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.
From our friends at Generation Rescue:
Dear Generation Rescue Community,
Many of us know that Congressman Posey has been an outspoken supporter in Washington for our children with autism. Because we desperately need people with integrity and honestly like Bill Posey in Congress, Jennifer Larson, Chief Executive Officer of Vibrant Technologies Inc., has offered to co-host a fundraiser for him.
There will be two pieces to the event.
The online donation goal from the community is $15,000. We are hoping that everyone who can afford to will consider giving at least $25 to help raise this amount through social media and email lists to all our fellow autism parents, grandparents and supporters. Please send this link far and wide:
Lyn Redwood wrote this post on the Safeminds website. For those of you who do not know who Lyn is, her son is what I would consider "Child Zero" for Thimerosal/mercury poisoning. Lyn is a nurse, a lone voice of reason on IACC and one of the first people to ask about mercury in vaccines back in the 1990s - and count the micrograms - and having realize there were hundreds of mcgs in the pediatric scheduke, sounding the alarm bell. A bell that CDC, AAP, AMA, Slate, Wired, Washington Post, New York Times, LA Times, Paul Offit, Nancy Snyderman, Dorit Reiss and so many others can NOT UNRING. We all owe Lyn a debt of gratitude for pursuing medical safety for our kids and ourselves (flu shots contain mercury).
You can purchase Robert Kennedy's book Thimerosal: Let The Science Speak today.
Several months ago I received a call on my cell from a number I didn’t recognize. Usually I let such calls go to voice mail but for some reason I picked it up. A friendly raspy voice alleging to be Robert F. Kennedy, Jr. requested to speak to me. At first I thought it was a hoax. But after a few seconds I recognized the voice from the Ring of Fire talk radio program and realized this was not a prank.
Robert F. Kennedy, Jr. was calling to invite me to attend a high profile meeting that he had arranged with U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius and officials from the Centers for Disease Control (CDC) and Food and Drug Administration (FDA) to discuss the continued use of thimerosal, a mercury-based preservative, in vaccines.
He also asked if I would be willing to read a research paper that he had commissioned reviewing the science regarding thimerosal, and to accompany him on a meeting with colleagues to call on select members of Congress for help.
I was more than glad to help out. I have spent the last 15 years of my life researching mercury. I have been involved in countless meetings with high levels officials at the CDC, the FDA, the NIH, and the HHS urging them to remove thimerosal from all medical products, including vaccines. I was honored to be a part of this effort and to work with Robert F. Kennedy, Jr. to protect other children from what happened to my son over 20 years ago.
My son’s story: poisoned by mercury
When he was born, my son weighed close to 9 lbs. He was a happy baby who ate and slept well, smiled, cooed, walked, and talked all by one year. But shortly after his first birthday, my son began to regress physically and developmentally, losing speech, eye contact, and social interactions. He no longer slept through the night and suddenly refused to eat foods that he had previously enjoyed, gagging and spitting them out. He started suffering bouts of bloody diarrhea.
It's been a while. I used to come and plead at the microphone for help for autistic children and families. Up until a couple of years ago, I submitted public comments under my name or with organizations for nearly every IACC meeting - going all the way to back when you took over the National Institute of Mental Health in 2002. Gosh, I've met with you in person more than a half a dozen times to talk about the science, what conditions we were seeing in kids on the spectrum, and the research that was needed to find the answers to help. But not anymore. I realize now that I was wasting my time. You haven't listened to anything I - or the thousands of other heartbroken parents - have been telling you.
Tom, as I know you know, twenty-five years ago, autism was a little-known, uncommon disorder. Today, autism is more common in America than childhood cancer, juvenile diabetes, and pediatric HIV/AIDS combined.
The increasing numbers of children being diagnosed with autism has created a national health emergency.
In a speech at the National Institutes of Health on September 30, 2009, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. Obama expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments, and therapies to help people affected by autism achieve their fullest potential.
That has not happened.
Instead of seeing any kind of improvement, or any kind of progress, the numbers of autistic children have continued to rise.
Now 1 in every 68 children in America has autism. My prediction for what you are going to do about it? The same old thing! Tweak the strategic plan, talk about it a lot, do the same old science anyway regardless of the plan, choose to promote the science you like, dismiss the science you don't, move on.
One of the biggest obstacles to doing meaningful research and to seeing any kind of real change, has been the fact that you, Tom, have turned a deaf ear to parents. We've been telling you about our children and their challenges for years. Read more at the Safeminds site.
Managing Editor's Note: Active Healing joined AofA as a sponsor earlier this year. I would be remiss if I did not share that Sarge Goodchild was the very FIRST professional to explain to me that my girls had treatment options beyond the early intervention and speech therapy recommended by the Neurologists who diagnosed them. He has spoken at Autism One and sees clients from coast to coast. He told me about diet, biomed and has been an active advocate for my girls for over a decade. (We're old, Sarge!) He has teamed up with a company and.. well I'll let him tell you below. Kim
By Sarge Goodchild
It’s summertime! Before we re-opened the pool for the season, we had to deal with any water which has remained from the past season. It is always shocking to see what has become of that water left without maintenance. It has stagnated and become filthy. Of course, this doesn’t happen during the season of use because we make sure to maintain proper flow of the pool water. If the water is circulated through filters the water maintains its health. In essence, where there is healthy flow there is health. I mention this because the same thing happens within our bodies.
To maintain the health of the body it is crucial to maintain proper flow. Flow consists of absorbing nutrients and expelling of waste products. When the body fails to maintain flow waste products and toxins sit in the body where they are absorbed deeper into the cells. Of all the interventions pursued by parents of children with autism detoxification ranks highest in efficacy with 74% of children improving according to the Autism Research Institute - ARI Publ. 34/March 2009. Homotoxicology has done a great job laying out why detoxification is so important. If we are unable to expel waste products the following sequence occurs.
- Excretion Phase = Expulsion of Toxic Products
- Intense sweating, difficulty concentrating, tears, joint pains, myalgia, coughing, sneezing, heartburn, diarrhea, polyuria, reticulocytosis, lymphedema, electrolyte shift, susceptibility to infection
- Inflammation = Turbo-Cleansing by the Activated Defense System
- Acne, meningitis, conjunctivitis, sinusitis, pharyngitis, epicondylitis, acute sprain, acute bronchitis, gastroenteritis, urinary tract infection, leucocytosis, lymphangitis, lipid metabolism disturbance, thyroiditis, acute infections, weak immune system
- Deposition = Storage of Toxins in the Extracellular Space
- Nevi, chalazion, exostosis, myogelosis, nasal polyps, silicosis, arteriosclerosis, intestinal polyps, gallbladder or kidney stones, polycythaemia, lymph-node swelling, gout, obesity, goiter
- Impregnation = Invasion of Toxins into the Cell
- Allergies, asthma, rosacea, migraines, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, chronic bronchitis, hypertension, coronary heart disease, chronic gastritis, chronic urinary tract infection, insufficiency of the lymph system, metabolic syndrome, adrenal exhaustion, dyslipidemia, menopausal symptoms, recurrent vaginitis, hyperthyroidism, glucose intolerance, chronic infections, autoimmune disease
- Degeneration = Destruction of the Cell by the Toxins
- Scleroderma, alzheimer’s disease, macular degeneration, spondylosis, osteoarthritis, bronchiectasis, chronic obstructive pulmonary disease, congestive heart failure, atrophic gastritis, renal atrophy, anemia, fibrosis, diabetes
- Dedifferentiation = Neoplastic Changes in the Cell
- Tumors, cancer
- Ask them to ensure that the bill is held until it is fixed or let it sunset so we can start fresh.
- Ask them to please adopt the APRC's proposed changes to make this bill worthy of the unanimous consent of the Senate. Our kids deserve better than the bill as it is currently written. We are asking for fiscal accountability, medical best practices and more action to keep kids safe.
Here are the phone numbers to call:
Senator Harry Reid - 202-224-2158 Senate Majority Leader
Senator Tom Coburn, 202-224-5754
Senator Ted Cruz, 202-224-5922
Senator Rand Paul, 202-224-4343
Senator Mike Lee, 202-224-5444
Senator Jeff Sessions, 202-224-4124
Senator Ron Johnson, 202-224-5323
Senator Jim Risch, 202-224-2752
We are hearing rumors that are scaring parents - telling them that if the bill sunsets, all the money will be lost. This is just wrong. This bill only "authorizes" money to be spent - it does not "appropriate" a dime. What we are fixing here is a failed policy that has ignored the needs of our community and not resulted in a single new treatment. Please make the calls and keep calling. And don't forget to send this far and wide on social media to get your friends and family to help.
Managing Editor's Note: This post on the SafeMinds site is a glimpse of the future for so many of us. The world is "aware" and "cares" and softly lit under blue lights while our kids age into an abyss of service, employment and housing choices regardless of the severity of their autism and Asperger's. Life will not be easy and we will have to work harder than ever. And so we will.
By Heidi Roger
This time of year is very hard.
My friends and colleagues are all attending high school graduations, going to graduation parties, and talking about what colleges their kids got accepted to.
My son Andrew is not going to college.
Andrew is 19 years old but he does not have a driver's license, he has never had a girlfriend, he has not learned to shave himself. I have to help him wash his hair when he takes a shower.
Your friends talk about the milestones, rites of passage, and new opportunities for their kids. You nod and smile even though your stomach gets a knot in it, not because you aren't happy for your friends-you are-just because you had so many hopes and dreams for your own child too.
Jennifer and I talked on the phone every day. Her husband barbequed the best ribs in the state of New Jersey. Their daughter was born four months before Andrew and we were deliriously hopeful together. Jennifer had another child, Avery, a year after Andrew was born. Andrew was 27 months old when he was diagnosed with autism. I hit the ground running trying to help him, researching treatments, finding other parents to talk to , fighting-I mean advocating-for his education with our ill-informed school district.
When Andrew was five, we went to Jennifer's house for a visit. Andrew walked around the room looking at colorful things that caught his eye. Avery was only four years old, he grabbed Andrew's Magna Doodle and made a beautiful drawing of a flower : "Look, Mommy, look what I drew!" Avery was being four -a typical four -that's all, but I couldn't breathe. My heart was broken in a thousand pieces. Read the full post at Safeminds.
Autism’s Environmental Component: New Research Upends Scientific Orthodoxy Strangling Autism Progress
By Sallie Bernard, President, SafeMinds
New research has just come out which will hopefully drive a stake into a scientific theory that has strangled scientific progress in autism. The theory – that autism’s cause is almost entirely genetic – hasn’t matched the evidence for decades and has undermined promising avenues to prevention and effective treatments.
My son with autism is a happy young adult with a big engaging personality. But his left hand is permanently swollen and scarred. He bites his hand when he gets anxious,occasionally so hard that it bleeds. Sometimes we know what triggers the panic attacks. Often we have no idea. They simply arise within, from his biology. In very anxious episodes he may pound his head and cry, “my head hurts.” His gift of autism comes with a heavy price.
Bill was diagnosed with autism in 1992 when he was four and a half years old. After developing normally for 2 1/2 years, he regressed into a severe condition marked by loss of speech and motor skills, behavior dysregulation and altered sensory and mood states that finally became what is called autism.
A few years after his diagnosis, the scientific theory that autism was all genetic—inherited from family members due to rare gene mutations—emerged as a way to explain the mystery of autism. At the time, this view was a step forward from the previous theory of autism as an outcome of bad parenting. At least it attempted to view autism as biologically based rather than psychosocial, and many parent advocates became believers.
Read the full post at the Safeminds site.
By Kent Heckenlively
As a father, I live a divided life. My daughter Jacqueline has severe autism, seizures, and at the age of sixteen years old still cannot speak. When she walks she sways like a drunken sailor, always looking like she’s about to capsize – but more often than not making it to her destination.
By contrast, my thirteen-year-old son Ben is neurotypical. He does not have seizures or autism, and is athletically gifted. He is usually the fastest kid in his group, and as his soccer coach recently told me, “Ben has this almost sixth sense for being in the right place at the right time to get the ball.”
My son is also highly verbal and has a wicked sense of humor. Because I’m a science teacher and a member of the executive board of my union, I’m often interacting with a few of his teachers and they tell me many of the funny things he says in class. I cringe sometimes because I recognize my barbed, sarcastic humor and know that in many instances it is appreciated and amusing to people, but fear in others it will get him into trouble. “Watch your tongue,” I’ll tell him, worried that he might be viewed as defiant, and yet secretly proud that he is nobody’s fool.
As a science teacher I’m aware that my parental life presents me with a classic science experiment. I have one child with no trace of autism or other neurological problems, and another who is severely affected. Granted, the sample size is small, but it might yet present some intriguing data for further consideration.
From our sponsor Safeminds on the reauthorization of the Combatting Autism Act: Pick up the phone and call your Representatives and Senators. If the CDC is correct, there are 1.2 million families with affected children in the country. That is a lot of phone calls. Tell them what your family needs. Tell them you support the APRC principles and that you expect them to work for a better bill. Tell them that 5 more years of the status quo is not going to help.
By Katie Weisman, for the SafeMinds Government Affairs Committee
I’ve lived in “autism land” now for over 14 years with 3 wonderful boys. I love my children more than my life, but I cannot say that it has been an easy road and I wonder how much less they would have to work and struggle if autism didn’t affect them the way it does. Would they have girlfriends and be driving already? Would they be able to write a paragraph independently? Would they have part-time jobs and be saving for college? I have long since given up trying to predict where they will end up and I am beyond grateful for how far they have come, from being completely non-verbal at 4, but I will never give up fighting to get back what was taken from them and right now is one of those opportunities. They, and all of the other kids and adults with autism, deserve real help and real action.
I am asking all of you who have ever fought for your kids to help and take action.
The Combating Autism Act is up for Reauthorization by the end of September. SafeMinds is part of a coalition of groups advocating for substantive change in the bill. We are calling ourselves the Autism Policy Reform Coalition (APRC) and we represent over 100,000 families nationwide. You can read about our member groups and our policy recommendations on our brand new website: http://www.autismpolicy.org/
In a nutshell, we are working for the following in the bill:
1) A two-office model of autism policy coordination – one for research and one for working with all the other federal agencies. We truly need new leadership from the top down. I want this legislation to ensure that there is at least one person with whom the “buck stops”; just one person who wakes up every morning and says, “My job is to help people with autism lead better lives.”
Right now, the IACC, which is “in charge” of federal coordination is not functioning. It holds a handful of meetings a year, it has no authority to actually allocate any funds, and it does not have the resources to implement anything. This is a video from the end of the July 2013 IACC meeting in which members (mostly public) express their frustration with how things are going:
2) More community input into the research that gets funded so that the priorities shift away from basic research towards studies that will help people. Treatment, best-practice, environmental causation and prevention are all grossly underfunded. As an example, in the last 5 years reported, $169.8 million dollars has been spent trying to find genes for autism, while only $9.6 million was spent on studies of interventions to help non-verbal individuals speak/communicate. I do not believe that this represents the priorities of individuals with autism or their families...
Read the full post at Safemiinds.
By Scott Laster
Health officials, doctors, and the media are intentionally deceiving you about the link between vaccines and autism. The people who claim to be acting in your best interests are putting your children’s health, and even their lives, at risk
They say that the science has proven that vaccines don’t cause autism
But they know vaccines can and do SOMETIMES cause autism
The American government found that Hannah Poling became severely autistic after being vaccinated against nine different diseases at one doctor’s visit when she was 18 months old. An underlying “mitochondrial disorder” was found to make her vulnerable to vaccine injury. In fact, the American government has quietly compensated at least 83 children with autism for vaccine-injury
The Italian Ministry of Health found the MMR vaccine caused Valentino Bocca’s autism when he was 15 months old
They say it is proven that there is no link between vaccines and autism. But they know that only one shot (MMR) and one ingredient (thimerosal) has been studied, and the CDC has admitted to Congress that the basic science has never been performed to study autism rates in children who have been given the recommended 24 doses against 9 different diseases before age one versus autism rates in children who have not received those vaccines. Actually, there has been one such study – and it found a three times increased risk of autism from the vaccine administered at birth
Imagine after a food-poisoning outbreak at a buffet, the CDC tested only the potato salad and then declared that all of the food was safe and the food poisoning did not come from the buffet—would you believe them?
Read the full post here.
I hope to see you Sunday! I'm honored to be the dinner speaker. KIM
OR 2014 Annual Conference, Legislative Briefing and Dinner Event
Making it Happen: Reforming Policy and Law in Support of Person-Centered Quality and Choice
When Sunday, June 8, 2014 arrives we hope you will be by our side. Great speakers have been confirmed and include attorney Bill Choslovsky, advocate and author Kim Stagliano, and Kathy Brown, President of the Developmental Disabilities Nurses Association.
VOR’s Washington Initiative, which includes Congressional visits, will occur the week of June 9, 2014. For more information, including registration opportunities, visit VOR’s website.
What are you waiting for?
If you prefer to respond by mail, here is a print form with conference details and registration form to mail.
From our sponsor: VOR
VOR 2014 Annual Conference and Initiative
"Keep up the good work! I found this Conference to be very educational and encouraging! Thanks for all you do!" ~ 2013 Conference Participant
Register by June 30 and enter to win TWO free airline tickets from within the Continental US!
This Inaugural Autism Education Summit for parents, professional and caregivers showcases how implementing a holistic approach and treating the whole individual can ease the medical conditions and behavioral symptoms common in children, adolescents and young adults with autism spectrum disorders (ASD). Over the three days, summit attendees will have the opportunity to investigate:
•Practical guidance on how to manage the components of autism from medical treatments to behavioral therapies to long term care of adults
•Current treatment options available for autism medical conditions specific to your situation
•Recent developments on medical conditions associated with autism
✓ Physician Oversight Committee oversees and
curates all Summit curriculum
✓ Science-based lectures from national experts
in their field
✓ Many opportunities to interact and ask questions
of the speakers
✓ Parent support from veterans in autism treatment
✓ Expert panel discussions
✓ Free evening events to mingle and have fun
From our sponsor Safeminds.org.
By Lyn Redwood
You've noticed it.
I've noticed it.
There's been a major onslaught from the media in the past few weeks linking the recent cases of measles in the U.S. and the fact that a minority of American parents chooses to forgo vaccines for their children.
On April 28, 2014, Forbes.com accused parents who don't vaccinate as being part of an "anti-vaccine hysteria," and contended that this "hysteria" "continues to do real damage to the lives of children around the world."
On May 1, Michael Gerson, writing an op-ed in the Washington Post, argued that parents should not have the right to choose not to vaccinate.
But the most disappointing for me was from Stephen Colbert. Full disclosure: I love Colbert. He's smart and funny and does a great job of finding unexpected ways to educate and entertain. But I was incredibly disappointed with the interview he did with Dr. Paul Offit, the Chief of the Division of Infectious Diseases and the Director of the Vaccine Education Center at the Children's Hospital of Philadelphia, ending the show with Offit's claim that we have the pharmaceutical companies to thank for our good health in America, because Big Pharma has created vaccines that allow our children to "lead longer, better, healthier lives." Offit did not answer Colbert's question about whether he was directly profiting from Big Pharma. Which he is, of course. Dubbed "Dr. Profit" by some activists, Offit is co-inventor of the RotaTeq vaccine and a co-holder of the patent on it.
Read the full post at Safeminds.
VOR Speaks Out About National Crisis: A Lack of Choice, Quality and True Person-Centered Care For The Disabled
Managing Editor's Note: I'd love to meet AofA readers at the VOR National Conference dinner on Sunday, June 8 at the beautiful Hyatt Regency in Washginton DC. I have the great pleasure of being the dinner speaker. The event spans several days, includes panels, speakers and a chance to engage in Congressional advocacy during the week. Imagine face to face meetings with your Congressional leaders to tell them what YOUR CHILD will need for a safe and meaningful future - as opposed to what neurodiversity advocates and national agencies who smell M-O-N-E-Y in our kids want. Learn more and register HERE. Kim
Elk Grove Village, IL
Across the country, tens of thousands of individuals with developmental disabilities, including autism, are suffering due to lack of access to appropriate care and services.
The numbers representing present and future need are alarming. Almost all states have waitlists for accessing adult support services, with more than 280,000 individuals with developmental disabilities, including autism, going without necessary care in 2013. Almost one million individuals with developmental disabilities, including autism, are still living with caregivers over the age of 60. In the next decade, over 800,000 on the autism spectrum will transition to adulthood.
So where do we go from here?
For 30 years, VOR, a national nonprofit organization, has advocated for high quality care and human rights for people with intellectual and developmental disabilities. VOR is the only national organization calling into question the impact of decades-long state and federal deinstitutionalization that continues in earnest, especially in light of current unmet needs already in the community.
“Individuals with profound intellectual and developmental disabilities or autism have significant care needs,” Julie Huso, Executive Director commented. “The impact of going without adequate care is felt equally by the individuals and their family caregivers.”
In 2013, there were 280,000 people with developmental disabilities, including autism, who were waiting for services. VOR has carried these concerns to all levels of government, including the White House and Congress, and has recently joined forces with a group calling itself the Coalition of Community Choice, a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers to advance the principle that community can be experienced in all residential settings. VOR believes that true community is a concept not limited to any particular residential settings.
By Katie Weisman, for the SafeMinds’ Research Committee
Thanks to Mark Blaxill and Cynthia Nevison, PhD for the graphs.
On March 28th, thousands of media outlets released the new US autism prevalence numbers of 1 in 68 in 8-year-olds born in 2002 and counted in 2010. These children are 12 years old now. What was glaringly lacking in the media coverage was any critical thought about that actual data, any sign that reporters had actually read the new report or any sign of urgency on behalf of our children.
The CDC’s take away messages were as follows:
1) We’re reporting a 30% increase in autism in 2 years, but you don’t need to worry because these kids have always been here. We are just better at counting than we were before.
Comment: There has been a 37-fold increase in reported autism spectrum disorders in the past 30 years – which would be about 1984, hardly the dark ages. Do you really believe that there were this many kids with autism around when you were young? The prevalence was 1 in 2500 in the early 80s or .4/1000; as of this month, it is 14.7/1000. The CDC has yet to conduct a population-based count of people with autism of all ages and severities which would lay this issue to rest. We should all be asking why they haven’t. They continue to say that they still can’t be sure if the increase is real – over and over again – for the past decade.
2) It looks like the kids are getting milder – they have less intellectual disability (ID) – and it’s due to broader diagnosis.
Comment: Up until the 2006 data, the ADDM reports only stated the percentage with IQ’s below 70, which were stable (on average) in the early reports (see chart 1) but the averages masked a wide spread in the actual percentages by state. Breakdowns into three categories of ID started in the 2008 data. The percentage of children diagnosed with autism in the newer reports (see chart 1) is consistent with the percentage with ID in the older reports, but the CDC did not supply data on diagnostic categories in the past. What is unclear is what is driving the change in the ID of the children. Are we seeing children who still have autism but are less language impaired?
3) There is no possibility that autism and vaccines are connected because the numbers are still going up.
Comment: Assuming that there is, in fact, a smaller percentage of ASD children with Intellectual Disability, those shifts do correspond to the beginning of the phase out of thimerosal in vaccines, which is a plausible explanation as well – but one CDC doesn’t mention. Thimerosal reduction in the recommended childhood vaccine schedule (HepB, Hib and DTaP) started in 1999 and it was phased out over several years. However, shortly thereafter, in the 2002-2003 season, the CDC started encouraging flu shots (most of which contained thimerosal) for infants 6-23 months and in the 2004-2005 flu season flu shots were formally recommended for all infants starting at 6 months of age. Meanwhile, the CDC and ACOG also added influenza vaccines (most of which still contained thimerosal) to the recommendations for pregnant women in all trimesters in 2004. This FDA letter makes clear that thimerosal-containing infant vaccines would still have been administered throughout 2002 – the birth year of the current ADDM report but at amounts, on average, probably less than in the 2000 birth cohort. The exposure to any particular child is an unknown without checking their history.
4) If you are a young parent, check out our website to learn the signs of autism and talk to your pediatrician if you have concerns. Early intervention is the answer.
Note: We have covered the strange case of fugitive from justice Dr. Poul Thorsen (Principal Investigator on the Danish Autism Studies, indicted on 22 counts of wire fraud and money laundering by a U.S. Federal Grand Jury) at AofA:
Autism Researcher Poul Thorsen Indicted
Round 2: CDCs Poul Thorsen Lying in Plain Sight
First Fraud: Dr. Poul Thorsen and the original “Danish Study”
Poul Thorsen Called Industry “Scumbag” Scientist and Mercury Shill
WANTED BY THE FEDS: Poul Thorsen, Who Helped Pull Off CDC Vaccine Autism Heist
Three years after his indictment, here is follow up from Safeminds:
Dr. Poul Thorsen, Principal Investigator on the Danish Autism Studies, extends his unwarranted freedom from prosecution as another anniversary on his indictment for 22 counts of wire fraud and money laundering by a U.S. Federal Grand Jury passes on April 13.
SafeMinds calls upon the US Department of Justice and the US Department of State to bring Dr. Thorsen back to the United States and to justice. We also call upon Chairman Darrell Issa and the House Committee on Oversight and Government Reform to take up this issue as an oversight activity this year. We believe this warrants a Congressional hearing to understand this failure to fully address the allegations, to determine if others at the Centers for Disease Control and Prevention (CDC) were complicit, and to address the failure of the CDC and the scientific community to investigate all of the studies from this project while holding current findings in deferral until fully investigated.
Following Thorsen’s indictment in 2011, SafeMinds issued a statement calling for an independent review of vaccine/autism research for data manipulation and conflicts of interest. To review those comments, click HERE. A year later a full report delivered to Chairman Issa, the Committee and other members of Congress outlined the issues. For that detailed report on Poul Thorsen, click HERE. In 2013, the Office of Inspector General at the Department of Health and Human Services (HHS/OIG) elevated Thorsen to the top of their “Most Wanted” List. Information from the OIG may be viewed HERE.
A Brief Background on the Indictment: The Criminal Indictment No. 1:11-C R-194 United States of America v. Poul Thorsen states that beginning around February 2004 and continuing through February 2010, that Thorsen ‘aided and abetted by others known and unknown, did knowingly devise and intend to devise a scheme and artifice to defraud and to obtain money and property by means of materially false and fraudulent pretenses, representations, and promises and omissions of material facts, well knowing and having reason to know that said pretenses, representations and promises were and would be false and fraudulent…’ The indictment provides that Thorsen submitted false invoices and created private invoices (from a CDC laboratory using false signatures). He is alleged to have stolen more than $1 million from a CDC grant to Denmark he helped establish while working at CDC. If convicted on all counts, Thorsen could face up to 260 years in prison and $22.5 million in fines.
Please join us in welcoming Sargent Goodchild and his neurological reorganization program called Active Healing to the AofA family. Sargent was the very first provider I met who told me about biomedical treatments, diet, and a wide range of therapies that could help my girls improve their functioning. He has presented at Autism One and across the country at conferences. Kim
Neurological re-organization (NR) honors and integrates the natural order of human development. NR uses a prescribed set of repetitive movements to remap your child’s neural pathways. Just as traffic is rerouted around damaged sections of road, NR strengthens existing neural pathways around damaged or underdeveloped parts of the brain.
Please take 7 minutes to listen to Dr. Albert Enayati passionately petition IACC to include regressive autism and vaccination in their work. Their blithe response? "You've used up two minutes of your time." Thank you to Canary Party for posting this video link.
From the Safeminds site: Albert Enayati is one of the original founding board members of SafeMinds and an author of the original Auitsm and Mercury paper. He is a Principal Research Engineer with 33 years experience in R&D/mechanical testing of over 100 orthopedic devices maxillofacial, trauma and spine systems.
Managing Editor's Note: Please support our sponsor VOR and consider attending their conference in June in Washington DC., to ensure appropriate care and housing choices for YOUR child in the future. "Making it Happen: Reforming Policy and Law in Support of Person-Centered Quality and Choice." VOR is the ONLY national, nonprofit advocacy organization supporting residential choice from small to large housing options.
By Desiree Kameka, Director of Community Education & Advocacy, Madison House Autism Foundation and Tamie Hopp, Director of Government Relations & Advocacy, VOR
Did you know…
ü In the next decade, over 800,000 on the autism spectrum will transition to adulthood.
ü Almost all states have waitlists for accessing adult support services, yet the average growth of funding nationally is only 3.2%.
ü Almost one million individuals with intellectual and/or developmental disabilities (I/DD) are still living with caregivers over the age of 60.
In response to these staggering statistics, there is a movement of families and local organizations working together to create sustainable solutions to this national housing and support service crisis. They are gathering information at conferences, many have joined together for advocacy as the Coalition for Community Choice, and are sharing solutions at the new Autism Housing Network.
This collective energy and collaboration is in direct response to efforts by some government officials and even advocacy organizations to limit and eliminate certain options based solely on residence or workplace size and location, without assessing the smiles, laughter, sustainability, job security and true empowering sense of community and belonging that is alive and well in these residential and vocational opportunities.
What does policy have to do with housing, employment and service choices?
Federal and state policy and laws are largely responsible for how long term support services (LTSS) are regulated and funded.
In one recent, significant example, the Affordable Care Act of 2010 required that the Centers for Medicare & Medicaid Services (CMS) modify their regulations. On January 10, 2014, CMS released the long-awaited final version of the regulations, CMS 2249-F and CMS 2296-F. The new rule defines what CMS considers to be characteristics of “home and community” settings and the new person-centered planning requirements.