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.

Registration includes:

• Access To All Summit Lectures

• Complimentary Coffee and Tea Throughout the Event

• Gift Bag with Products, Conference Program Guide and Vendor Coupons

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:

https://secure.donationreport.com/donate.html?key=F6U0PAVWIA85  

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.

Thank you to our good friend Laura Bono and our sponsor Safeminds for this letter. Please share with family, friends throughout social media. Thank you.

Dear Tom,

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

Great Job Everyone!  The Autism CARES bill is being held but we need to make sure that the Senate continues to hold the bill.  Please call the following Senators and:

1. Ask them to ensure that the bill is held until it is fixed or let it sunset so we can start fresh.  
   
   
2. 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.

Thanks! 

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.

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.
   
CAA

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

Have you registered yet? 

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?

 Here is an online registration form.

 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.

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.

1 in 68 is Only Part of the Autism Story; What CDC Didn’t Report Ten Times the Prevalence of Severe Autism over Time, But No Increase vs. 2008

By Katie Weisman, for the SafeMinds’ Research Committee

Thanks to Mark Blaxill and Cynthia Nevison, PhD for the graphs.

Introduction

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.

Learn more about our our program or discover more about neurophysical development.

 

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

Originally published in EP Magazine; excerpts posted here.

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.

UPDATE: Wow - Chili's CAVED to media pressure and cancelled their support of NAA. What a tragedy - from now on when a child wanders and dies you can Tweet and FB Chili's and remind them.

Chili's Grill & Bar 54 minutes ago Chili's is committed to giving back to the communities in which our guests live and work through local and national Give Back Events. While we remain committed to supporting the children and families affected by autism, we are canceling Monday's Give Back Event based on the feedback we heard from our guests. We believe autism awareness continues to be an important cause to our guests and team members, and we will find another way to support this worthy effort in the future with again our sole intention being to help families affected by autism. At Chili's, we want to make every guest feel special and we thank all of our loyal guests for your thoughtful questions and comments.

PLEASE dine at Chili's on April 7  to support NAA. There is a  bot-based campaign to ATTACK NAA - a great org - started at the kitchen table of real autism Moms a decade ago and protecting, loving and supporting real families EVERY DAY - these attackers have branded NAA falsely - and viciously in social media - to protect an industry.  NAA SAVES LIVES with their wandering program. Eat. At. Chili's.

We'd like to thank Chili's restaurants for their support of the National Autism Association and their many programs that help keep children, teens and adults with autism spectrum disorders safe and in many instances, can save their very lives.

A 29% increase in two years. Not Just Genetics. Not Just Increased Awareness and Better Diagnosis!

On March 27, 2014 the CDC published "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010" (MMWR Surveillance Summaries / Vol. 63 / No. 2). The study finds the rates of autism spectrum disorders (ASD) of children born in 2002 have increased to 1 in 68, up from 1 in 88 of children born in 2000. With males five times more likely to develop autism, the prevalence rate increased from 1 in 54 in boys born in 2000 to 1 in 42 in boys born in 2002.  SafeMinds is in the process of reviewing the most recent report but has these comments based on preliminary data presented to the autism community.  A more detailed analysis will be available soon at www.safeminds.org.

Problems with the ADDM Data

1. No Unified Process:  After a decade, the CDC has still not unified the review process among ADDM sites as it pertains to access to school-based health records, meaning there are site to site differences in the study. CDC notes that the lowest prevalence rates were found in states in which little or no access to education records was available (Alabama, Colorado, Missouri, and Wisconsin). When these four states are removed, total prevalence is 1 in 58, not 1 in 68.  Read more and download the full statement at the Safeminds site.

VOR 2014 Annual Conference, Legislative Briefing and Dinner Event

Making it Happen: Reforming Policy and Law in Support of Person-Centered Quality and Choice

Have you registered yet? 

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?

 Here is an online registration form.

 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

An analysis of 100 million US medical records reveals that autism and intellectual disability rates correlate with genital malformation incidence in newborn males, an indicator of exposure to harmful environmental factors. The study also finds that Autism and intellectual disability incidence decreases dramatically in states with stronger regulations on diagnosis.  Read article. 

An innovative methodology from researchers at the University of Chicago was used to detect the role of environment on population level for autism risk. The study shows the strong contribution of non-genetic, i.e., environmental factors driving autism rates. Our only quibble is the author’s supposition that vaccines play a weak role. This inference is due to the methodology not incorporating time trends but only single time point geographic differences. Since vaccines are given across geographies, this methodology would not be able to detect any effect of the burgeoning vaccination schedule over time. Nevertheless, a much needed and welcomed study.

Read the full post at the SafeMinds site.

Attention New Jersey Constituents!

Urge your Legislators to Protect New Jerseyans with I/DD From Eviction

The New Jersey Department of Human Services' Division of Developmental Disabilities (DDD) is moving ahead, with the blessing of Governor Chris Christie, on two initiatives that will result in hundreds of New Jersey's most fragile citizens with intellectual and developmental disabilities (I/DD) losing their homes.

The Governor recently announced a new, aggressive timeline for the closures of the North Jersey (by July 2014) and Woodbridge (by Jan 2015) Developmental Centers. These closures, being pursued by DDD, come at the same time as DDD is aggressively pursuing its "Returning Home New Jersey" initiative which seeks to move New Jersey citizens now receiving quality supports in other states (for lack of supports in New Jersey), back to New Jersey.

The vast majority of the hundreds of affected individuals with profound I/DD and their families/guardians OPPOSE these transitions. Woodbridge, North Jersey, and the targeted facilities in other states (including Woods Services, Melmark and Devereaux) are HOME to the affected residents, and have been for years, even decades. Many residents have experienced failed "community" placements and will predictably suffer if transitioned to unprepared, unlicensed smaller settings. 

These proposals are dangerous and cruel. They are being pursued with a goal that money will be saved, but even that goal is highly questionable if adequate, life-sustaining services are provided.  With a waiting list of more than 8,000, what makes New Jersey think they can safely serve individuals with profound I/DD with complex medical and behavioral challenges in already over-saturated, underfunded "community" system. And why? The affected individuals are already receiving great care.

Taking action is easy – just click here  for a ready to send letter that will be sent directly to your legislators. Then share this alert with all your New Jersey family and friends on email lists and social media. (New Jersey residents only please.)

We believe strongly that a position in support of person-centered needs and choice is not only morally correct, but also legally justified by the Supreme Court's Olmstead decision.  These individuals are already home. Please help by taking action today.

 

Here are the highlights from the latest VOR newsletter.  To subscribe please fill out this form. Thank you.

Table of Contents

1. Facebook 500! Help VOR reach 500 Likes

2. 2014 Speaker Feature: Meet Kathy Brown, President of the Developmental Disabilities Nurses Association

Just a Good Editorial on Person-First Language

3. The Problem with Person-First Language: What’s Wrong with This Picture?

In the News

4. Kentucky: Adult abuse registry bill heads to House

5. National: Too many intellectually disabled are still excluded from the world of work, study says

Quality in the Community?

6. Washington, D.C.: 25 charged in largest Medicaid fraud bust in D.C. history, feds say

Quotable, by Samuel R. Bagenstos

Here are the highlights from the latest VOR newsletter.  To subscribe please fill out this form. Thank you.

Table of Contents
VOR and You
1.  Be a Sponsor. Get a Sponsor!

2.  VOR 2014 Annual Conference and Initiative Speaker Feature:  William Choslovsky –Brother, Lawyer and Advocate

3.  Using Social Media More Effectively

FEDERAL NEWS

4. H.R. 831:  The Fair Wages for Workers with Disabilities Act of 2013

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

"The entire program was well thought-out, inspiring and interesting." ~ 2013 Conference Participant

2014 VOR Annual Board Meeting, State Reports, and Conference

Saturday, June 7, 2014
•Annual Board meeting
•State Reports
•State Networking and Hospitality Reception

VOR is our newest sponsoer.  Please  like the FaceBook page and follow them on Twitter @VOR_net.

VOR is a national, nonprofit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities, including autism (I/DD). We're delighted to have this opportunity to share with you information about the work VOR does and the news and issues of importance to our constituency with I/DD. 

If you ever have any questions about our organization, please contact Julie Huso or Tamie Hopp at info@vor.net.

This week's newsletter included:

1.  Facebook 500! Help VOR reach 500 Likes

2.  Introducing Ellen Laurence, VOR’s new Colorado State Coordinator

3.  Annual Conference Speaker Feature:  Meet  Kim Stagliano – Mother, Advocate, Speaker and Author (See more and REGISTER HERE.)

STATE NEWS

4. Kentucky: State Senate Judiciary Committee approves bill that would create an adult protection registry

5. California: Developmental Center families are worried

6. Kansas: State Becomes First to Outsource Disability

Managing Editor's Note: We are pleased to welcome VOR as a new sponsor of Age of Autism. As our children are growing older, we are looking a a plethora of new issues related to aging out and beyond. VOR will help us navigate Community Resources, Special Education Resources, Legal Resources, Medical Resources and offers a Toolkit for Families. Please like VOR on Facebook, follow them on Twitter, bookmark their YouTube page and follow them on LinkedIn.

By Tamie Hopp, VOR Director of Government Relations & Advocacy

I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.

VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

We are the only national organization that has not redefined terms that other disability advocates have hijacked, like “choice,” “community,” and “self-advocacy.”  

Does Ari Ne'eman, a self-proclaimed self-advocate really speak for you?

For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Families know best.

To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year.Just send your email address to info@vor.net with your request. Your email will never be shared or sold.

You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all.  In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.

The U.S. Centers for Disease Prevention and Control (CDC) recently revealed, as a result of oversight requests by Congress, a research paper written by Thomas Verstraeten, MD titled “Increased risk of developmental neurologic impairment after high exposure to thimerosal-containing vaccines in the first month of life” that documents statistically significant adverse health outcomes associated with exposure to the mercury-based preservative thimerosal. The announcement of yet another thimerosal paper that was written by CDC officials, but not publicly made available until now, is sending ripples throughout the autism community and elsewhere.

According to the newly released document, CDC epidemiologic surveillance officers utilized the Vaccine Safety Datalink (a large linked database from four health maintenance organizations in Washington, Oregon, and California) containing demographic, medical and immunization data on over 400,000 infants born between 1991 and 1997 to conduct the investigation.  The data was categorized according to cumulative exposure to ethylmercury (thimerosal) after the first month of life and the subsequent risk of the infant developing degenerative, neurologic or renal disorders. In the paper the authors found an elevated relative risk (RR) for the following disorders: Autism 7.6, nonorganic sleep disorders 5.0 and speech disorders 2.1.  In a court of law, a relative risk of 2.0 typically implies cause and effect.

The newly released document mirrors an earlier analysis obtained by SafeMinds through a Freedom of information act request filed in early 2000.  This is when SafeMinds obtained hundreds of emails, minutes to the now famous Simpsonwood meeting and the “Generation Zero” data, the first computerized run of the Vaccine Safety Datalink investigation into thimerosal containing vaccines and adverse neurodevelopmental outcomes.

Managing Editor's Note: Last week Katie Wright wrote about the paltry assortment of research conducted by Autism Speaks. Here, SafeMinds shares their research from 2013.  Thank you, Safeminds.

A look back at Safe Minds Research in 2013 – “Research that focuses on need to know science.”

It is now widely accepted that environmental factors play a huge role in the etiology of autism. Yet, even with this fact, most autism research continues to be diverted into less fruitful areas. To date, the autism community has very little government-funded research that helps us to understand why some children are more vulnerable to environmental exposures and what those exposures might be so they can be avoided and individuals with autism successfully treated. That is why SafeMinds has been laser focused on environmental research and the gaps that exist in our knowledge of causes, treatments, recovery and ultimately, prevention.

Over the past decade, SafeMinds has funded approximately $1.5 million in research with the help of supporters like you. This research has lead to the publication of over 20 research articles / and a greater understanding of the mechanisms that underlie autism spectrum disorders. Below is a list of projects that SafeMinds funded in 2013, so be on the lookout for several new publications soon. We are proud of our research accomplishments but there is so much more we need to know to help those suffering with autism now. If you would like to help us fund more of these kinds of studies please visit www.safeminds.org and click on the “donate now” button to support our research efforts.  All donations are tax-deductible.

Lyn Redwood, RN, MSN and Laura Bono

SafeMinds Research

1. There is emerging evidence supporting the hypothesis that autism may result from a combination of genetic susceptibility and exposure to environmental toxins at critical moments in development. Recent research identified a much higher prevalence rate of autism among grandchildren of Acrodynia (pink disease) survivors, which supports the hypothesis that mercury susceptibility may be a risk factor for autism.  SafeMinds is currently funding additional research in an effort to identify genetic idiosyncratic sensitivity to mercury in an effort to be able to identify infants who are more vulnerable to mercury exposure so preventive treatments can be started early and efforts made to avoid unnecessary exposures. 

2. Vaccination is inherently an immune activating process and many parents of children with ASD report episodes of regression after vaccination. While vaccines have been tested for efficacy in protecting against pathogenic infection, there have been no studies investigating whether immune challenge through vaccination in early infancy could negatively affect neurodevelopment. Therefore, SafeMinds is funding studies in an animal model to determine if immune challenge through vaccination can affect the various cell populations in the developing brain, including purkinje cell number, hippocampal cell size and microglia.

Congrats to our five winners: Stephanie, Weiss, Valerie Carson, Shelly Sharpless, Alison MacNeil, Heather Stafford. Check your email for instructions from Kim. 

Also, Lee Silsby wants you to know that they now accept MEDCO health insurance.  They are always seeking ways to serve families affordably.

The same original Enhansa in a water-dispersible powder form that is nearly taste-free.

The Canary Party presents: (Watch at YouTube.)

Our friends at National Autism Association are yet again -- putting tangible tools into the hands of autism families. This time it's iPads through their .Give a Voice program. 

REGISTER HERE and your dollars will help support the iPad program. You don't need to donate a penny - just SHOP retailers you already love!

From the MommyTechBites blog:

During the month of December, We-Care.com has teamed up with The Gwendolyn Strong Foundation (theGSF)  and the National Autism Association to empower children with SMA and Autism by granting them iPads. But they need our support. We can help by shopping online this holiday season through We-Care.com and selecting iCan: Empowering Kids with Autism and SMA as our Cause of the Month.

iPads have changed the lives of children with disabilities. With the help of therapists and parents, kids with special needs can communicate basic needs and wants, perform activities of daily living and even draw or write for the first time.

Gina Navani is the Director of Operations at We-Care.com, a unique, online shopping mall that incorporates donating into people’s everyday lives. Mommy Tech Bytes caught up with her to learn more about how readers can support this cause. Read the interview HERE.

Note:  Ben Swann interviewed our own Mark Blaxill.  Please comment at the YouTube video as well as here.  Thanks.




The claims that autism is caused by vaccines have been completely disproven, right? We have all heard that claim, maybe most famously by actress and model Jenny McCarthy.

But is the claim untrue? What if I told you that while HHS says there is no link between autism and vaccinations, the federal government has quietly awarded families of autistic children damages as a result of vaccine injuries?

The first step toward truth is to be informed.

The story we are talking about today is something that just doesn’t get attention from the mainstream media, and on the rare occasion when it does, the story is predictable. Scandal surrounding a doctor who claims autism and vaccines are linked. The bizarre parents who believe that their child has autism because of a vaccine, a claim clearly not based in science.

But is there more to this story than what the media has told you?

The real story behind vaccines begins in 1986...

Read more: http://benswann.com/truth-in-media-vaccine-court-and-autism/#ixzz2mSbkSlAo
Follow us: @BenSwann_ on Twitter

Dear Readers, we ask if you could take some time this holiday weekend to please assist ARI with this important survey. It might be more fun than spending an hour with Aunt Edna and Uncle Frank! And you can win an iPad for your time.  Thanks.

Help Research That Makes a Difference: Complete Updated ARI E-2 Survey to Identify Autism Subtypes by Nov. 30 

Who: Chief Investigator Steve M. Edelson, Ph.D., Executive Director, Autism Research Institute.

What: Comprehensive, consent-based online survey. The survey is lengthy and may take up to two hours to complete - you can start the survey and then save it, and return and complete it another time. The survey is online at: www.AutismResearchSurvey.com.  

Purpose: (1) To corroborate previous research on subtyping autism and (2) to determine, based on parent responses, possible underlying causes and the effectiveness of various interventions in relation to each subtype.

Compensation: Participants who complete the entire survey will receive a complimentary one-year subscription to ARI's science newsletter, the Autism Research Review International.  

Complete the survey this month for a chance to win

In addition, participants will be entered in a contest to win an Apple iPad. Must complete the form by 10 p.m., PST Nov. 30th. Note: one entry per individual with ASD. Drawing is Dec. 1, 2013.

Where: International - this study is open to participants worldwide.  

When: Starts November 1, 2013 - data collection is ongoing, but the iPad drawing will take place on December 1st, 2013. The winner of the drawing will not be announced publicly.

Take the survey here.

From SafeMinds.

Unfortunately for those waiting for justice, the Committee on Oversight and Government Reform has been postponed (likely until next year) due to the Chairman’s desire to obtain more official information and background from CDC and HHS prior to the hearings.

This delay in the hearing timing gives everyone a few more days to send SafeMinds your stories.  Make sure you tell Congress your experiences with the VICP, even if you never filed a case.  In addition to those who filed vaccine injury cases, SafeMinds is interested in knowing what prevented or deterred people from filing cases.  We know from conversations with parents of autistic children, that many of you have not filed but have vaccine injured children.  Be sure to include things like a lack of information on what to do from your doctor, lawyer or health department; discouragement from anyone – including medical staff; or concerns including failure to provide timely information or to document or corroborate your child’s problems from physician’s offices, staff or insurance companies.

BUT FIRST — Please let your member of Congress know you still want to see these hearings happen as soon as possible. Phone: 202-224-3121 and ask to be connected to them.

Yesterday The Canary Party and her partners who have worked for a year on getting hearings on vaccine injury in Congress were informed that the hearing on the VICP that was set for December 4th has been postponed until next year.  We had a call this morning with the staff of the House Committee on Oversight and Government to get more clarity on their decision, and were informed that while the community of vaccine injured families is eager to testify, they were finding "reluctance" from others to participate in the hearings. 

Our response?  Of course they don't want to participate in these hearings!  Those both inside and outside of government who are involved in the Vaccine Injury Compensation Program and the monumental injustice that is being inflicted on untold thousands of vaccine injured children do not want to have to show up and explain what they have done under oath!

One thing is clear... Vaccine interests have been fighting this hearing in a way we have never seen before. 

Boiling down the message we received from OGR... they still want to work with us on things, and they might reschedule the hearings for next year.  Do they mean it or is it just a stall tactic?  We don't know.

We STRONGLY encourage you to take time today and call the Committee on Oversight and Government Reform and let them know how disappointed you are with their decision to pull the plug on hearings for our injured children a mere two weeks before the event.  Feel free to share with them your story.

Phone: (202) 225-5074

And call your Congressional representatives and tell them you want hearings on vaccine injury.

Chairman Darrell Issa
Oversight and Government Reform Committee
2157 Rayburn Building
Washington DC

Dear Chairman Issa,

Thank you for the opportunity to discuss recent developments with your staffers. On behalf of the many dedicated advocates who have been working so hard on the VICP hearing, we must express our great disappointment over your decision to defer hearings into the National Vaccine Injury Compensation Program (NVICP).

When you first raised the prospect of hearings with some of us last April, you raised the hopes of thousands of families who have experienced vaccine injury, many of whom have encountered mistreatment, abuse and outright fraud at the hands of the NVICP. As we discussed privately on numerous occasions, comprehensive hearings into the many faces of malfeasance within the VICP offer a unique opportunity to shine a light on how wildly the reality of the National Childhood Vaccine Injury Act of 1986 has veered from the original intent of Congress. We believe the path forward you have chosen--delaying the hearing into 2014 in order to receive an update of the 1999 Government Accountability Office (GAO) report on the VICP as well as an update of the 2006 NVICP strategic plan from HHS—is well-intentioned. But for the community of vaccine injured families, it represents a retreat into more of the same and only delays a true investigation of the failures of the NVICP. These involve the neglect, abuse and suffering of thousands of American families, including painful injury, lifelong disability, economic devastation and death. Congress’1986 Act and its VICP are what enable these tragedies to continue every day. “Strategic plan updates” prepared by HHS officials will only give the NVICP the opportunity to stonewall, while the kind of GAO report that would really hold the NVICP accountable would take more than a year not just a few months. As we said to your staffers, we’re interested in providing input to the scope of a GAO project, but we’re pessimistic at what it can accomplish in the time available.

By Allison Chapman

Today The Canary Party is launching their new “Not a Coincidence” campaign through the release of a compelling video of stories involving girls, and Mothers of girls, whose  lives have been shaken after  receiving Merck’s HPV Vaccine, Gardasil.  To date there have been an astounding 31,741 adverse events, 10,849 hospitalizations and 144 deaths following HPV vaccines.  We are honored to be able to help these beautiful girls in any way we can and we thank all of them for taking the time to share their accounts, their feelings and their needs with us through this video. Gardasil Not A Coincidence Video from The Canary Party



How can you help?

Please take time to watch and share this video with everyone you know.  Share it with your Congressional representatives and ask them to attend the Vaccine Injury Compensation program hearing in the Oversight and Government Reform Committee in December. Tell them that the system is broken and these girls should not be left behind.  They are our future mothers and they are worthy of being heard, worthy of funding for treatments and worthy of action.  Also ask them to push for individual HPV vaccine hearings.

“Not a Coincidence” is a campaign started by The Canary Party to address the medical community’s repeated excuse that the symptoms,  too many experience after vaccination, are just coincidental.   Seizures, fainting, rashes, allergies, GI dysfunction, loss of speech, etc, etc, all labeled a coincidence.  It’s time to end the excuses and start to listen to the injured and the parents of the injured.  They deserve a forum to be heard, they deserve a voice, respect, attention, hearings and answers.  They need a medical discovery process that uses their symptoms and their progression, of illness in the process of finding treatments.  All injured are worthy of being treated individually instead of disregarding their many medical maladies because of a vaccination program that is not allowed to be questioned.  It’s time for the government, the medical community and the media to start taking into account the many affected.  Please take the time to hear from these beautiful, well-spoken girls and Moms tell their stories of injury after Gardasil. And share far and wide!

Allison Chapman is the Mother of 2 girls and 1 son who has regressive autism, seizures, apraxia and gastrointestinal dysfunction. She currently is on the board of the Canary Party

Managing Editor's Note: Thank you to Lori McIlwain and all of our friends at National Autism Association for this urgent message to the American public about wandering, autism and tragedy.

By Lori McIlwain

The Day My Son Went Missing Wandering Is a Major Concern for Parents of Children With Autism

NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.

While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.

The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.

Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.

Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.

Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.

Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”

Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”

That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.

Can’t attend the hearing on the National Vaccine Injury Compensation Program?

You are not alone!  The program created by congress to “swiftly and generously” provide compensation to care for those individuals harmed by vaccines is badly broken.  Vaccine safety advocates continue to expose malfeasance within the NVICP, and on December 2013 the Congressional Committee on Oversight and Government Reform will investigate this dysfunctional program.  Sadly, most of us who live with vaccine injury can ill afford the time or expense of traveling to Washington, DC.

But you can still have a voice in this historic proceeding!

The Canary Party has provided two methods by which you can tell congress your story:

1.    Complete a brief questionnaire

We have created a survey that can be completed within a few minutes.  Answers will be tabulated to provide the OGR committee an overview of how the NVICP worked or did not work for families affected by vaccine injury and death.  You will have the ability to provide short comments for some of the questions.  Click HERE to access the survey.

2.    Submit written testimony

Tell congress what happened to you or your loved one.  In your own words, describe how vaccines caused damage or death.  What was your child like before the vaccine(s)?  What were your own beliefs about vaccines?  Did your experience with the NVICP help you or your child in any way?  Report how your journey with vaccine injury has brought you to where you are today.  You can write a paragraph, a page, or more.  Email your story to pcarroll@canaryparty.org.

Deadline for submissions is November 27th.  Survey data and testimonials will be submitted to the OGR Committee for inclusion as hearing exhibits.  All submissions MUST include your name, email address, state and zip code.  We may contact you if clarification is needed, and will redact your personal data before submitting your testimony to congress, if you prefer.

Feel free to complete the survey AND submit your full story.  Excerpts from both methods may be used in oral testimony provided to congress.  Thank you!

Our friends at Generation Rescue are sponsoring a photo contest for Moms who might enjoy a glass of wine (or in the case of the photo above, Scotch, but I swear it was a prop!) to unwind after a day of Warrior'ing.  (Yeah, I made up that word, I'm a writer, I'm allowed to do that kind of fancy stuff.)

Here are the details:

Last month, we hosted a Kids Halloween Costume Contest and this month it’s all about the Mommy Warriors! Continuing our season of giving, we are hosting a How Mommy Likes Her Wine photo contest on our social media pages, November 11th-17th.

We’re asking Moms to have fun, get creative, and send in photos of how you like to drink your wine for your chance to win! Must use hashtag  #MommyLikesHerWine. 
 
How to Enter:

To enter, you can:

    Post your photos to our Facebook wall,
    Tweet them to us @GenRescue,
    Or post them to your Instagram account and tag us @generationrescue.  

Must include hashtag #MommyLikesHerWine in order for your submission to be counted.
 
Must be 21 and over to enter.

Are you planning to attend the National Autism Association Conference in St. Pete Beach, FL November 14 - 17? Featuring special guests Jac and Chris Laurita, the conference is just $150 for 4 packed days of learning, friendship and support.  And you can bring a friend for just $100. Childcare is available - and The Tradewinds Resort boasts a family oriented staff TRAINED TO BE AUTISM FRIENDLY. (Most schools can't say that!)

This conference feels just like a vacation - the warm sands, cold cocktails and friendly faces at every turn will recharge your batteries. NAC is a single track format, so you can attend every session - or as many as you'd like.

Register and learn more at the National Autism Conference website.

Our friends at Generation Rescue have a blog on their website. It's loaded with usable info for autism families from coast to coast.  And there's still time to enter the Halloween costume contest. Be sure to add GR to your favorites. Follow them on Twitter at @GenRescue and on Facebook

Here's an excerpted post on special needs planning - an important topic.

Q&A with Ryan Platt, Founder of A Special Needs Plan

We are proud to highlight Ryan Platt, founder of A Special Needs Plan. In this feature Ryan will discuss Special Needs Planning and will explain how planning for your child’s future does not mean that you are giving up hope or giving up on your vision of your child’s independent future. Parents are the best advocates for their children and work tirelessly to ensure they have the brightest and best possible future. Hope for our children is important to our belief system as parents.

GR:        What is Special Needs Planning and where should I as a parent focus regarding my child’s lifetime needs?

RP:        Special Needs Planning is a process to identify the financial, legal, and lifetime needs for you, your family, and your loved one with special needs. Special needs planning does not end with the identification of these needs, but includes the necessary action steps that you need to take to ensure a bright future for everyone in your family while you’re alive and well, while you’re alive but are no longer able to be your loved one’s primary caregiver because of your own health issues, and when you pass away.

By Zack Peter

Surviving the Fall!

Is it fall already? I could’ve sworn I was just going broke buying last year’s Christmas gifts and here we are again. (I guess that’s what happens when your parents both like to keep busy and give you an abundance of siblings.)

With a young brother on the spectrum following a biomedical treatment plan (and living my own life gluten- and dairy-free), the holiday season can often be one of the most challenging times of the year. There’s all the food, the family members that lack respect for the GFCF diet, the relatives that don’t quite understand Ethan, all the food, the ever-changing schedules, and then there’s all the food. Not to mention all the dirty looks from family when Ethan slips some sweets and then goes nuts (when yeast and hyperactivity become his two best friends). 

I opened it up to you guys, via social media, asking for suggestions for beating the holiday pandemonium. Some said to skip the family gatherings and go on vacation. That certainly sounds nice, but who has the extra money? Some of you suggested passing out handouts to family members on autism. Please. My family believes Ethan just needs a “spankin’” and you want me to give them a handout?

Reality is, going out of town for the entire holiday season is just too expensive and reasoning with the family is likely going to end with aunt Gerald punching another hole through the wall. So you always want to come prepared.


The best thing to carry with you this holiday season is a survival bag. And in that bag make sure to pack:

-    Digestive enzymes for all that food! (My favorite is Digest Spectrum by Enzymedica - covers everything!)

SafeMinds proudly announces the launch of its new documentary: From Acrodynia to Autism:
Mercury Across Generations, More Evidence of Harm. This heartbreaking story about the forgotten childhood illness, acrodynia, has lessons for us today as we face an eerily similar disorder, that of autism. As the acrodynia epidemic disappeared from the earth through scientific truth, so can the autism epidemic end in our own lifetimes.



Acrodynia, more commonly called Pink Disease, ravaged children in Europe, North America and Australia in the first half of the 20th Century. Besides developing bright pink hands and feet, common symptoms included social withdrawal, lack of eye contact; loss of language; repetitive and self-injurious behaviors; body-rocking; toe-walking; sensitivity to light, noise and touch; low muscle tone; immune disorders and respiratory problems.