AGE OF AUTISM

Jenny McCarthy, A Real Housewife and a Beauty Queen Walk Into Autism One

Jenny just held a panel Jacquelyn and Chris Laurita (Real Housewives of New Jersey) and Miss Montana Alexis Wineman ( who herself has autism.)

Well Amy A New Concept in Allergen-free Shopping

Check out WellAmy.com shopping.

Age of Autism Team at Autism One

Some of our team at AO. Anne Dachel, Mark Blaxill, Dan Olmsted, Cat Jameson, Julie Obradovic, Kim Stagliano and Teresa Conrick.

New Video: How Mercury Triggered The Age of Autism

By Dan Olmsted and Mark Blaxill. Motion design by Natalie Palumbo. With Special Thanks to Teresa Conrick. View YouTube Link How Mercury Triggered The Age of Autism here.  We will be discussing this video and more this morning at 8:30 at Autism One in the Louvre Room.

It's Not a Tornado But It's Deadly. This is Just Autism.

 

Owen Black

How many Americans know the names Owen Black, Mikaela Lynch and Andrew Howell?  Why hasn't the pediatric fear machine gone full throttle to warn parents about this deadly scourge?  Why isn't CDC providing an immediate preventative solution? Ah, because this is "just autism," not an infectious  disease like chicken pox, or flu, right? Sadly, yes, that's right. And it's so plainly wrong.  Autism is a tornado for families facing the challenges of a diagnosis. Hey....

 

It's just autism.

It's just three beautiful children. Two sons and a daughter.

Mikaela Lynch

One newspaper did report the deaths The Zanesville (Ohio) Times Recorder did a fine job of sharing details about wandering and death in autism. But where were "the big guys?"  Where is NBC's Nancy Snyderman, weeping openly and begging parents to take caution? Where is the American Academy of Pediatrics, too busy telling America about the dangers of spices? Hey....

 

It's just autism.

It's just three beautiful children. Two sons and a daughter.

Laurie Cramer of Autism Society of Akron was quick to explain the realities of autism in the article. She contacted us at Age of Autism and asked us to share with readers that the there is a fund for burial costs for Andrew Howell.

Tools for Parents of Children with Disabilities, including Video-Modeling and Community Support, Now Available Online from YourSpecialEducationRights.Com

Managing Editor's Note: YSER happens to be here in CT - and I know both Julie and Jennifer. I highly recommend you sign up for a FREE membership to access videos that walk you through IEP meets for just about every circumstance from Early Intervention to Transitioning to Adult services.  KIM

Connecticut Special Education Advocate Julie Swanson and Attorney Jennifer Laviano, together with Mazzarella Media, announce the official launch of YourSpecialEducationRights.com, a free online resource that provides the first and only video-based special education resource for parents of children who have disabilities.

Attorney Jennifer Laviano and Special Education Advocate Julie Swanson, having spent their professional careers securing appropriate special education services and protecting the Civil Rights of students, announce the launch of http://www.YourSpecialEducationRights.com (YSER), a free online resource for parents. Developed with Mazzarella Media, an Emmy-award winning educational content provider in Southington, CT, YSER is the first and only online social community to provide video-based training and an online social support network comprised exclusively of parents of children who have disabilities.

With a constantly-updated series of engaging videos, designed to help parents recognize and model appropriate responses to roadblocks put forth by public school administrators when special education services are requested, YSER gives parents powerful tools and guidance to effectively advocate for their child’s education. Parents who take advantage of YSER’s online membership are able to learn about their legal rights in a practical, user-friendly format.

What’s more, YSER features a robust online community, plus up-to-the-minute blogs by Jen and Julie and live WebShows featuring a variety of disability experts where members can engage with Jen, Julie and fellow YSER fans to learn even more about how to support their child’s educational needs. In just the last six weeks, almost 350 parents have joined, with new members added every day.
Given that May is Mental Health Awareness month, the timing for YSER's official online launch couldn't be better, and was kicked off with a WebShow on May 15th entitled "The Intersection of Special Education and Mental Health." The need for the site is clear and growing: the U.S. Centers for Disease Control and Prevention recently reported that as many as 20% of American children have a mental disorder including autism. And in 2009, the U.S. Department of Education reported that about 5.8 million of the nation’s schoolchildren, ages 6 to 21, receive special education services through the Individuals with Disabilities Education Act (IDEA). But for many of these children appropriate services are being routinely denied.

“So many parents tell me that nobody at the school is listening,” says Julie Swanson, Special Education Advocate and YSER co-founder. “It can be intimidating to attend an Individualized Education Program (IEP) meeting when you aren’t an expert in the laws. How can you advocate effectively for your child? We’re here with YSER to empower parents with the tools and information they need to feel prepared for that next IEP meeting.”

YSER co-founder and special education attorney Jennifer Laviano agrees: “One of the hardest things for me to hear from parents is that their lack of knowledge resulted in a lack of service for their child,” she explains. “Julie and I are absolutely convinced that the outcomes for kids whose parents know their rights—and whose parents can speak from a position of authority about their child’s rights and needs—are far better than for kids whose parents are uninformed.”

That explains Jen and Julie’s primary motivation to launch YSER. “Securing an appropriate education for your child—and getting your child the services he or she needs—shouldn’t be something reserved only for the wealthy," says Jen, "and parents shouldn’t have to risk financial ruin to fight for their children’s rights. We launched YSER so that parents of any income could access appropriate resources to help them do right by their child.”

To learn more about YSER, visit YourSpecialEducationRights.com.

ABOUT JENNIFER LAVIANO

Attorney Jennifer Laviano is in private practice in Connecticut. Ms. Laviano is the Chair of the Board of Directors of COPAA, the Council of Parent Attorneys and Advocates, the leading national voice for the Civil Rights of students who require special education. Her representation of children with special needs encompasses the full spectrum of advocacy under the IDEA (Individuals with Disabilities Education Act), from attendance at IEP Team meetings and Mediation, to zealous and experienced litigation in Due Process Hearings and Federal Court. Ms. Laviano is a regular presenter, both locally and nationally, on the subject of the special legal rights of children with disabilities and their entitlement to receive a Free and Appropriate Education, and writes the popular blog SpecialEdJustice.com.

ABOUT JULIE SWANSON

Julie Swanson is in private practice as a special education advocate in Connecticut. After her son was diagnosed with autism, Ms. Swanson decided to change careers and returned to school to obtain an additional degree as a Disability Specialist. Her practice is exclusively dedicated to helping parents of children with disabilities obtain appropriate special education services. Ms. Swanson's website YourSpecialChild.com is dedicated to the everyday needs of children who have autism spectrum disorders and other disabilities.

Robert F. Kennedy Jr. Speaking at Autism One

Now speaking. Fascinating opening. He spent his life around people with intellectual disabilities and yet did not know anyone with autism. Talking about his family's work with so many IDs. His focus as environmental lawyer leading him to mercury topic. Now to listen.

Congressional Panel Autism One

Mark Blaxill introduced the Congressional Panel. .

New Study by Dr. Martha Herbert & Dr. Julie Buckley in Journal of Child Neurology on Autism and Dietary Therapy

Dr. Martha Herbert

Managing Editor's Note: Thank you to Dr. Martha Herbert and Dr. Julie Buckley.

Dr. Julie Buckley

Of special significance is that we have an academic researcher working in conjunction/cooperation with a practicing physician in order to publish academically rigorous case studies that may have an immediate impact on patients. Sure beats another eye gaze study in Amazonian water rats, eh?  :)

Journal of Child Neurology

Autism and Dietary Therapy
Case Report and Review of the Literature

Martha R. Herbert, PhD, MD1⇑
Julie A. Buckley, MD, FAAP2

1Pediatric Neurology and TRANSCEND Research, Massachusetts General Hospital, Boston, MA, USA

2Pediatric Partners of Ponte Vedra, Ponte Vedra Beach, Florida; Nova Southeastern University, Fort Lauderdale, FL, USA

Martha R. Herbert, PhD, MD, Pediatric Neurology, TRANSCEND Research, Massachusetts General Hospital, Boston, MA 02129, USA. Email: marthaherbertmd@gmail.com

Author Contributions MRH and JAB contributed equally to this work.

ABSTRACT:

We report the history of a child with autism and epilepsy who, after limited response to other interventions following her regression into autism, was placed on a gluten-free, casein-free diet, after which she showed marked improvement in autistic and medical symptoms. Subsequently, following pubertal onset of seizures and after failing to achieve full seizure control pharmacologically she was advanced to a ketogenic diet that was customized to continue the gluten-free, casein-free regimen. On this diet, while still continuing on anticonvulsants, she showed significant improvement in seizure activity. This gluten-free casein-free ketogenic diet used medium-chain triglycerides rather than butter and cream as its primary source of fat. Medium-chain triglycerides are known to be highly ketogenic, and this allowed the use of a lower ratio (1.5:1) leaving more calories available for consumption of vegetables with their associated health benefits. Secondary benefits included resolution of morbid obesity and improvement of cognitive and behavioral features. Over the course of several years following her initial diagnosis, the child’s Childhood Autism Rating Scale score decreased from 49 to 17, representing a change from severe autism to nonautistic, and her intelligence quotient increased 70 points. The initial electroencephalogram after seizure onset showed lengthy 3 Hz spike-wave activity; 14 months after the initiation of the diet the child was essentially seizure free and the electroencephalogram showed only occasional 1-1.5 second spike-wave activity without clinical accompaniments. (see the pdf of the abtract HERE.)

SCOTUS Affirms Recovery of Attorney's Fees in Vaccine Cases Under Broad Circumstances

U.S. Supreme Court Affirms Recovery of Attorney’s fees in Vaccine Cases under Broad Circumstances

Under the National Childhood Vaccine Injury Act of 1986 (“NCVIA”), vaccine injured parties became entitled to a no-fault compensation system to be commenced by service upon the Secretary of Health and Human Services and “the filing of a petition containing” specified evidence with the clerk of the Court of Federal Claims. See 42 U. S. C. 300aa–11(a)(1).  The Act allowed claimants the opportunity to file a claim without being charged by an attorney because the Court of Federal Claims paid attorney’s fees and costs incurred by a claimant in any proceeding on an unsuccessful petition, so long as that petition was brought in good faith.

In the Cloer matter, the vaccine injured party received her third Hepatitis-B vaccine in 1997.  She experienced symptoms that led to a multiple sclerosis (MS) diagnosis in 2003 and then filed a NCVIA claim in 2005 when she learned of a link between MS and the Hepatitis-B vaccine.  The special master concluded, although reasonable minds could differ, that Cloer’s claim was untimely because the NCVIA’s 36-month limitations period began to run when she first experienced MS symptoms in 1997. The Federal Circuit affirmed the special master’s decision.  Nevertheless, Cloer sought reinbursement of her attorney’s fees and costs. The Federal Circuit ruled in favor of Cloer.  This past week, the Supreme Court affirmed that decision.

Did VICP former Director Geoffrey Evans Share Private Patient Medical Information with Dr. Paul Offit?

By Lou Conte

I recently received an audiotape  of an American Academy of Pediatrics sponsored teleconference that Dr. Offit held with other physicians in November of 2008. Dr. Offit spoke on the tape spoke about the HHS decision to concede that Hannah Poling, a petitioner in the Omnibus Autism Proceeding, suffered vaccine injury leading to encephalopathy with “features of autism.” 

In the audiotape, Dr. Offit criticized the decision to compensate Hannah Poling based on information provided to him in a conversation with Dr. Geoffrey Evans.  Dr. Evans, the former Director of the Division of Vaccine Injury Compensation, is the man who ran the Division  since the inception of the National Vaccine Injury Compensation Program in 1989 before retiring at the end of 2012. The Division of Vaccine Injury Compensation reviews the medical aspects of all petitions to the VICP and makes threshold decisions about whether to settle cases or to contest them.

Dr. Offit clearly stated that he  spoken to Dr. Evans about the case.  Dr. Evans appears to have shared confidential information about Hannah Poling’s case with Dr. Offit who then told other doctors. 

Listen to Audio File Here

(If you have difficulty with the audio file, the unofficial transcript is at the end of this post. Please note, we BLEEPED the medical diagnosis information that Dr. Offit discussed to preserve patient privacy.)

This leads me to ask the question: Did the National Vaccine Injury Compensation Program Fail to Protect Those “Least Able to Help Themselves”?

The money powers prey upon the nation in times of peace and conspire against it in times of adversity. The banking powers are more despotic than a monarchy, more insolent than autocracy, more selfish than bureaucracy. They denounce as public enemies all who question their methods or throw light upon their crimes. I have two great enemies, the Southern Army in front of me and the bankers in the rear. Of the two, the one at my rear is my greatest foe.
                                                                                                                               Abraham Lincoln on corporations

Does the pharmaceutical industry influence government to such an extent that officials in the National Vaccine Injury Compensation Program (VICP) failed to act in the public interests?

The VICP falls under the Health Resources and Services Administration, a department under the Secretary of Health and Human Services. According to the VICP website:

The VICP was established to ensure an adequate supply of vaccines, stabilize vaccine costs, and establish and maintain an accessible and efficient forum for individuals found to be injured by certain vaccines. The VICP is a no-fault alternative to the traditional tort system for resolving vaccine injury claims that provides compensation to people found to be injured by certain vaccines. The U. S. Court of Federal Claims decides who will be paid. Three Federal government offices have a role in the VICP:

•    the U.S. Department of Health and Human Services (HHS);
•    the U.S. Department of Justice (DOJ); and
•    The U.S. Court of Federal Claims (the Court).

The VICP is located in the HHS, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Vaccine Injury Compensation.

As a co-author of Unanswered Questions From the National Vaccine Injury Compensation Program in the Pace Environmental Law Review [1], I have studied the VICP in great detail. My interest in the functioning of the VICP flows from my 29 years of working in New York’s courts.

Texas High Court Hears Wakefield Appeal

Yesterday, the three judges of the Texas High Court heard the appeal over jurisdiction in the case of Andrew Wakefield against the British Medical Journal and journalist Brian Deer. The case was presented by attorney Brendan K McBride, which was felt to be well-conducted. It will now be between 1 and 6 months before the judges return their verdict.

Dachel Media Update: MN Insurance, DSM-5, Latino Campaign

By Anne Dachel

May 21, 2013, Minneapolis Star Tribune: Autism insurance mandate wins in Minnesota

May 21, 2013, Fox News: The DSM-5 is here: What the controversial new changes mean for mental health care

May 21, 2013, NBC Latino: Autism Speaks launches new campaign to reach Latino, black parents

May 21, 2013, KPLC 7 Lake Charles, LA Housing needed for adults with autism

May 21, 2013, New York Times: Aiming Autism Ads at Hispanic and African-American Parents 

 

Does Ethylmercury(Thimerosal) Inhibit The Clearance Of Measles Virus Infection Of The Brain?

By Teresa Conrick

 

 On June 18th, 1994, my daughter received an MMR vaccine and a HIB vaccine during a well-baby visit at our pediatrician.  Megan was fifteen months old.  Ten days later, her pediatrician report shows, -  "Fever- rash on body - ear infection."  That would be from me calling more than once as she had been sick since those vaccines.  She was to be put on antibiotics numerous times to try and recapture the health she once had.  Illness had become her chronic companion.  What was even more troubling was that my little girl had disappeared into an array of behaviors soon to be called "autism."

 

Years later I find myself, like so many others, still in disbelief that science is so polarized about autism.  There are puzzle pieces showing hints to a picture yet they need to be pointed out to be seen. I want to point out some of those puzzle pieces here. To do that, I need to present two studies that when solo, are intriguing, but as a pair, paint a picture of concern:

 

Differential immunotoxic effects of inorganic and organic mercury species in vitro.

 

"Recent work has indicated that the immunotoxic effects of mercury compounds may be significant contributors to human disease as well as mechanistically relevant to other target organ toxicities.....These results indicate that both organic and inorganic species of Hg can affect the human immune system, but that they may exert different effects on immune function."  Since Megan has had immmune dysfunction for years and now has an autoimmune diagnosis, I have been very interested in research on exactly that.

 

This abstract summarizes in vitro findings that ethylmercury decreases IFN-gamma release.   Further reading showed that IFN-gamma has antiviral activity and also important immunoregulatory functions. It is a potent activator of macrophages, has antiproliferative effects on transformed cells and it can potentiate the antiviral and antitumor effects of the type I interferons.  Those seemed like good nuggets of information that I tucked away.  I was to later remember it when I came upon this other abstract:

Tell IACC and AAP How Sick Your Autistic Child Is And About Unmet Medical Needs

SafeMinds believes that the lack of appropriate medical treatment for individuals with autism is a violation of basic human rights. Together we can improve the lives of children with autism now, but we need your help.

The IACC (NIH’s Interagency Autism Coordinating Committee) added the existence of co-occurring conditions associated with autism in the strategic plan for autism research back in 2011, acknowledging the need to better understand the scope and cause of these conditions, and the need for multidisciplinary heath assessments and effective treatment guidelines. But to date, far too little progress has been made. In an effort to address this urgent unmet need the IACC has invited Dr. Perrin, President of the American Academy of Pediatrics, to attend the July 9^th meeting to discuss what can be done to improve health care for children with autism. This is your chance to let them know what you think!

Those in the autism community understand that many of the behaviors present in children with autism, especially those that are self-injurious, are often related to physical pain and are treatable and preventable with appropriate medical interventions. Therefore, every effort must be made to increase the medical community’s knowledge and awareness of these co-existing medical conditions. 

Dachel Media Update:

By Anne Dachel

May 20, 2013, Washington Post: Measles outbreaks flourish in UK years after discredited research tied measles shot to autism

May 20, 2013, NY1: Family Of Autistic Man Claims He Was Tortured At Bronx Group Home

May 20, 2013, Psychology Today:  A Puzzle Piece? The Need for a New Symbol for Autistics

May 16, 2013, NewsmaxHealth.com: Johns Hopkins Scientist Slams Flu Vaccine

Professional Opinion on the Question of Changes in Autism Incidence

"...Results suggest that among professional psychologists with a terminal degree (n = 88), the majority believe that diagnostic changes can not fully account for the observed increase; 72% reported either the true rate may have, or definitely has, increased..."

Professional opinion on the question of changes in autism incidence

PDF (Size:162KB) PP. 61-67   DOI: 10.4236/ojpsych.2013.32A010
Author(s)

M. Catherine DeSoto, Robert T. Hitlan

ABSTRACT

The question of whether the prevalence increase observed in autism due to an actual increase in the incidence of autism is a matter of concern to professional psychologists, and has been a matter of debate. As professionals trained in diagnosis and research methodology, the opinions of psychologists are of interest. We report the results of what we believe to be the first survey of professional opinion on the topic. Results suggest that among professional psychologists with a terminal degree (n = 88), the majority believe that diagnostic changes can not fully account for the observed increase; 72% reported either the true rate may have, or definitely has, increased. In this sample, the professionals who are certain about the occurrence of a real increase (n=20) are five times as many as those who do not think the increase has occurred (n=4). These results are not meant to document whether or not an increase has or has not occurred, but instead speak to the question of consensus opinion among professional psychologists. What experts believe is an empirical question, and statements about what experts believe should be empirically based.

KEYWORDS

Counselor Attitudes; Professional Opinion; ASD; Autism Prevalence; Autism

Cite this paper

DeSoto, M. and Hitlan, R. (2013) Professional opinion on the question of changes in autism incidence. Open Journal of Psychiatry, 3, 61-67. doi: 10.4236/ojpsych.2013.32A010.

Preview the Legal Training Conference at Autism One

Fifth Annual EBCALA Legal Training Conference
Autism One • May 23-25, 2013

We hope we'll be seeing you at our fifth annual conference in Chicago during Autism One. In addition to our training sessions listed below, be sure to stop by our exhibition table.
Multiple Autism Law Topics provide a thorough overview of the many legal challenges facing the autism community. This track pulls together tremendous lawyers and advocates who are fighting for justice for the autism community.

Topics:

•    Know Your Parental Rights with DSM5 ASD Changes
•    Know Your Family Law Rights
•    Navigating the Maze of Health Insurance for Autism-related Interventions
•    An Update on Congress, Autism and the VICP
•    Know Your Vaccine Exemption Rights

Speakers & Moderators:

Kevin Barry, Esq., Mark Blaxill, MBA, Lou Conte, Rick Ellis, PhD, Karen Fessel, Dr PH, Mary Holland, Esq., Rolf Hazelhurst, Esq., Brian Hooker, Steven Kosser, Bob Krakow, Esq., Mitchel Perlman, PhD, Kim Mack Rosenberg, Esq., and Katie Weisman.

Special Education Law Day is an intensive day of training designed to get parents up to speed quickly and become a more effective advocate for their child. Parents will learn the basic concepts of special education law, the importance of strategizing and how to use this knowledge to gain control of their child’s education.

Topics:

•    IDEA Overview
•    Preparing for Advocacy
•    Assessments & Evaluations
•    IEP Strategy
•    Advanced Special Education Case Studies
•    Questions & Answers

Speakers:

Timothy Adams, Esq., Lynne Arnold, Jennifer Keefe, Esq. and Mitchel Perlman, PhD.

Dachel Media Update: Measles Mania, DSM-5 Worries

By Anne Dachel

May 20, 2013, Fox News: Measles surge in Britain years after vaccine/autism scare

May 18, 2013, Midland (MI) Daily Review: Benefit at CMU to showcase local talent, raise autism awareness

May 18, 2013, Santa Cruz Sentinel: Dr. Terry Hollenbeck: Immunizations work wonders-- and are still vital

May 18, 2013, Boston Global Post: DSM-5, controversial update to psych manual, released

May 18, 2013, UK Daily Mail: One in five U.S. children may have mental disorder

May 17, 2013, WWLP-TV East Longmeadow, MA: Raising funds for autism research

May 15, 2013, Chicago Tribune: How early can a child be diagnosed with autism?

 

Second Child with Autism Wanders, Drowns in One Week

 

(Note: This comment came in today -  "Make that three. We had a 2 yo boy who has autism drown over the weekend at his family's cottage (we live in Akron, OH). He got away from his mother and went right to the river. They found him within minutes, but it was too late. They need help for funeral expenses, as no one is prepared for those costs. We are helping to get the word out about the issue of wandering and autism in our community, as well as the family's need for assistance. Here is a link to a page they created for donations: https://www.giveforward.com/fundraiser/wnd2/in-memory-of-drew-Howell Thank you, Laurie Cramer Director, Autism Society of Greater Akron www.autismohio.org/GreaterAkron"

By Kim Stagliano

I awoke to an email on Saturday, the subject line read, "My son is missing." I paused for a moment. You know how email can be - lots of funky subjects that lead to phishing emails of all sorts.   But I opened and read the email.  And then I Googled the name of the child and the details that the sender had provided.  My God, her son was missing.

Owen Black had wandered away from his holiday condo in Perdido Beach,

Owen Black

Alabama and within two minutes, was out of his mother's sight, having slipped out the door.

I sent out a FB missive that hundreds shared and Tweeted for anyone in the area to try to help. Joe Scarborough from MSNBC, a Pensacoloa native, retweeted the call for help. Hundreds turned out to search. To no avail. Owen, like Mikaela Lynch last week, wandered and drowned.

Mikaela Lynch

THIS is the reality of autism and all the blue buildings and "It's just a difference" t-shirts and the "We don't need a cure - just accept them" in the world doesn't mean jack diddly squat. AUTISM IS AS DEADLY AS CANCER FOR MANY CHILDREN.  I woke up thinking of Owen. And now the news we all dreaded. AGAIN.

I Tweeted the sad news about Owen - and yes, I blamed his autism. Someone Tweeted back, "It wasn't the autism you moron" or something to that effect.  And then she blamed "negligent parents." Really? Must have been one of the "Autism is a difference not a disability" crowd.  Or perhaps a cruel skeptic - as there wasn't a scintilla of emotion for the child, for Owen.

I disagree. At all levels, from a preverbal child like Owen and Mikaela (and my own Bella) to an adult with Asperger's - autism affects day to day life in myriad ways. And yes, some are deadly. And as far as "negligent parents" go? Well, yes, I am quite sure there are rotten, negligent parents in the autism community, just as there are anywhere. The parents I have met have moved heaven and earth to keep their kids safe. I know one Mom who slept on a mattress barricading her front door in case her son tried to slip out at night. Another Mom whom I know to be a stalwart of the community, her son was found walking along a busy state route having slipped away - alive by the grace of a guardian angel. I lost my own daughter in Orlando as she quietly slipped out a hotel room door and got onto an elevator to the lobby of  a 22 story property on 2200 acres while I was in the bathroom.  We are not negligent - we are human.   I remember being pregnant with Bella and so tired by 2pm that I had to sleep. I put on the TV and locked my bedroom door and put a bell on a chair in front of the door, knowing that Mia and Gianna would knock the bell to the ground and I'd hear it before they could leave my room. Just to get a 30 minute nap. 

Chicago Bound For Autism One

Mark, Cat and Dan smile for a photo op.

(Note: we''ll be live blogging from Autism One on Friday and Saturday to bring the conference to our readers.)

By Cathy Jameson

I wait all year for this week to arrive.  This is the week I get to take a much-needed break and head to the Windy City.  Surrounding myself with friends who are like family, I get to see people I've known online for years.  I get to hang out with a group of believers who prove time and time again that nothing will stop them from helping their children.  Besides the Christmas holidays, going to the Autism One conference is my favorite week of the year.

This year, the conference sounds bigger than ever.  Congressional representatives will be in attendance.  Several authors of newly release books will be presenting and offering book signings.  Talks on biomedical, therapeutic, traditional and think-outside-of-the box approaches will be available.  Favorite old timers and some fresh, new faces in the field will share their knowledge and experience.  Many of us from the AofA team will also be at the conference.  We’d love to meet you and hear your story. 

The Autism One website lists the scheduled presentations and speakers.  This year’s schedule is

Cat and long-time AofA reader and supporter Lin Wessels meet for the first time. Wade Rankin proudly wears his Canary Party t-shirt in the background.

packed from Wednesday through Sunday and looks like it has something for everyone.  The keynote and Congressional panel will no doubt be a must-see for many conference goers.  Trying to find time to do everything and see everyone may be tricky, but as usual, special events will round out the conference.  These events help balance the intense learning and listening that goes on during the day.  It’s a great way to meet new friends while enjoying a fun night out.  

Hope remains the theme as we all create stronger unity within the community.  With only a few days left before the Autism One annual conference begins, I better start packing my bags.  AO, here I come!  Hope to see you there!

Cathy Jameson is a Contributing Editor for Age of Autism.
For more information and how to register, call 1.800.908.5803 or email info@autismone.org. 
 



 

 

Weekly Wrap: Gag Me

By Dan Olmsted

There's a moment in the 1950 movie Born Yesterday where the malaprop-prone Judy Holliday says, "This country and its institutions belong to the people who inhibit it." I'm starting to think Judy got that exactly right.

It's hard to conclude otherwise after this week's Columbia Journalism Review piece that singled out me and AOA (flattered, to tell you the truth), and said we were mangy dogs, all right, but that even balanced coverage of the vaccine-autism debate is, effectively, killing babies. It reminds me of the time after 9/11. If you criticized the invasion of Iraq, the terrorists win. If you didn't go shopping, the terrorists win.

Why not just root for the terrorists since about anything you did or didn't do would help them win?  It's more straightforward that way.

Nowadays, if you echo, let's say, Darrell Issa or Elijah Cummings or the late great Bernadine Healy, not to mention Andy Wakefield, and ask questions about vaccines and autism or even, apparently, quote those people disapprovingly, the babykillers win. Perhaps the most exotic babykiller allegation I came across was the idea that Susan Dominus's whack job on Andy Wakefield in The New York Times shouldn't have been published either -- even viciously anti-anti-vaccine attack pieces kill babies by continuing to bring up the subject.

Seriously, they do! Paul Raeburn said so on the Knight Journalism at MIT blog in 2011:

"So why would the Times do this story now?

"Here's why not to do it: I believe that this story will prompt more parents to refuse to vaccinate their children. Some of those children will suffer or die from illnesses that the vaccines would have prevented.

Congratulations to Sam Wessels 10 year old CNN iReport Award Winner for Autism

Many of you know Lin Wessels, a tireless advocate for people with autism - who by virtue of living in Iowa was able to meet all of the Presidential candidates, along with her son, to introduce them to autism. Lin has also been a supporter of the United States of Autism movie which features her family.

Sam's video "I speak about autism because I can" has won an CNN iReport award.   Said one judge: “Sam and his family are so thoughtful to share ‘their’ story. It's special that Sam talks so openly about autism and documented it via iReport,” wrote public relations consultant Sarah Evans.  Please join us in thanking both Lin and Sam for their work.

Watch the video at CNN here.

Autism and MMR before the Lancet Paper? Mumps, Marketing, and Monopoly!

Below is a new video from Dr. Andrew Wakefield. You can view the full series of videos at Autism Channel.  https://www.youtube.com/watch?v=HYcxIrs4oyk

Safeminds: Impact of the DSM-5 Criteria for ASD – Community Update - May 2013

By Katie Weisman, for the SafeMinds Research Committee Introduction

This month, the American Psychiatric Association will publish the latest edition of its Diagnostic and Statistical Manual – the DSM-5.  The manual contains significant changes to the diagnostic criteria for individuals with autism.

1. The name of the category will be changed from Pervasive Developmental Disorder to Autism Spectrum Disorder.

2.  The four previous diagnoses: Autistic Disorder, Asperger’s Syndrome, Pervasive Developmental Disorder- Not Otherwise Specified and Childhood Disintegrative Disorder will all be combined into the single category of Autism Spectrum Disorder.  Rett Syndrome will be eliminated from the manual since the gene that causes it has been identified. 

3. Three symptom domains will be reduced to two by combining the speech and social symptoms into a single category.  The number of criteria has been reduced from 12 to 7 which reduces the number of possible combinations of symptoms to receive an ASD diagnosis.

4. Severity codes will be added for each symptom domain, though the details will not be clear until the new manual is published.

5. Criterion B4 adds a sensory component to the diagnosis for the first time.

Criteria

The new criteria under the DSM-5 are as follows:

Autism Spectrum Disorder
Currently, or by history, must meet criteria A, B, C, and D:

A. All individuals must have or have had persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

Barbara Loe Fisher: Desperate Times for Vaccine Risk Denialism

Note: This post is from the NVIC site, please add them to your favorites and check frequently for up to date vaccination facts, data and news.  Their vaccine exemption chart by state has helped countless families learn their personal healthcare rights for themselves, and their children.

By Barbara Loe Fisher

These are desperate times for those denying vaccine risks. We know it because we are witnessing so many acts of desperation being committed by doctors determined to shut down the public conversation about vaccination and health. Vaccine risk deniers are working overtime to restrict public access to information, cover up vaccine injuries and deaths and violate the human right to informed consent to medical risk-taking.
 
No Flu Shots? No Employment.
 
2013 was only a few days old when public health agencies and medical trade groups called for veteran nurses and other health care workers to be fired for refusing to obey orders to get annual flu shots – no exceptions and no questions asked. 1 It did not matter that the risky and notoriously ineffective influenza vaccine turned out to be almost useless in preventing infection with the most prevalent influenza strains circulating in the U.S. this year. 2
 
Proposed State Legislation to Force Vaccine Use
 
This was followed by the introduction of legislation backed by public health officials and Pharma-funded medical trade groups like the American Academy of Pediatrics in states like Texas, Oregon, Arizona and Vermont. 3 Their goal is to remove or restrict non-medical vaccine exemptions in state laws so doctors have more power to force vaccine use by children and adults - no questions asked and no exceptions....    Read the full article at NVIC.org.

Dr. Jeff Bradstreet to Speak On Stem Cell Outcomes at Autism One

Furthering observations of Stem Cell Outcomes in ASD,

Stem cells are a powerful source of natural healing, but are still inadequately understood and challenges remain is ways to optimize the outcomes from cell therapies. This lecture will provide new insights into the methods being used and the likely mechanisms of healing. Cases will be discussed to illustrate the methods and successes.

Dr. Jeff Bradstreet is a graduate of the USF College of Medicine and a Fellow of the American Academy of Family Physicians. He is extensively published in autism biomedical interventions and recently published the first paper describing GcMAF protein therapy for autism. He is conducting research on stem cells in Europe and collaborating on an enhanced neurophysics intervention for ASD.

Columbia Journalism Review (CJR) Was For Free Speech Before They Were Against It

  Editor's Note: Yesterday, Anne Dachel took apart the recent piece in the Columbia Journalism Review that trashed "balanced" coverage of the autism-vaccines link. Back in 2005, they were much more tolerant of that hoary old first amendment thingee -- "Both sides in the debate make convincing arguments to support their cases," they wrote then, and, “With science left to be done and scientists eager to do it, it seems too soon for the press to shut the door on the debate." Now, for whatever reason, that story, called "Drug Test"  is not accessible on their site. So as a reader service to all you unbalanced Age of Autism types, here it is.  In addition, they ran an article in 2008 (see below) that attacked their own 2005 article, and that link is still live in their site. - -- Dan Olmsted

WayBack Machine CJR "Drug Test"

By Daniel Schulman

On May 18, 2004, the Institute of Medicine, a branch of the prestigious National Academies, delivered its eighth and final report on vaccine safety, seeking to end a scientific controversy that had built to a slow boil over the previous five years: whether a mercury-containing vaccine preservative called thimerosal was to blame for an alarming spike in autism cases among a generation of children. After three years of reviewing this and other immunization safety questions on behalf of the Centers for Disease Control and Prevention, the institute’s fourteen-member panel rejected the thimerosal link, and, in a powerful policy statement, recommended that research funding in this area be shifted toward other, more promising lines of inquiry. Under headlines such as this one from The Washington Post, EXPERTS FIND NO VACCINE-AUTISM LINK; PANEL SAYS MORE RESEARCH ON POSSIBLE CONNECTION MAY NOT BE WORTHWHILE, the press dutifully reported the IOM’s conclusions, perhaps as eager to lay the question to rest as the IOM panel itself.

For a time it appeared the controversy over thimerosal would end there. It didn’t. Over the past seven months, it has gained traction again, leaving journalists in an awkward position. The thimerosal question — scientifically, politically, and emotionally complex — is proving to be a test for journalism, and the successes and failures are evident in the coverage.

David Kirby, a Brooklyn-based writer, jumpstarted the debate in April with the publication of his book, Evidence of Harm, which lays out a compelling case for a connection between thimerosal and autism. Then, in June, Robert Kennedy Jr. followed with a more pointed — some say over-the-top — article, co-published by Rolling Stone and Salon.com, that alleges what amounts to a government cover-up of the harmful properties of thimerosal in the interest of buffering vaccine manufacturers from a cascade of lawsuits and maintaining public confidence in the national immunization program.

Still, the bulk of the scientific establishment denies the autism link, citing the conclusions of the IOM panel, and views believers as crackpots, conspiracy theorists, or zealots — a perspective many medical experts barely conceal in conversations with reporters. In an interview with Myron Levin of the Los Angeles Times after the publication of the IOM report, Dr. Stephen Cochi, the head of the CDC’s national immunization program, dismissed supporters of the thimerosal theory as “junk scientists and charlatans.” If so, then such universities as Harvard and Columbia, among others, employ charlatans — scientists who believe that a link between mercury exposure and autism is plausible. Even so, the perception that only distraught, activist parents and disreputable scientists back the thimerosal theory has seeped into the collective consciousness of the news media, which, in general, have been reluctant to cover the controversy.

Both sides in the debate make convincing arguments to support their cases, and in the cacophony of competing claims each is guilty of using data selectively. What is known is this: Since the late 1980s the number of children diagnosed with autism has increased sixty-fold, from one in every 10,000 in 1987 to one in every 166 in 2003. Much of this spike overlaps with a period when, due to recommendations by the CDC and the Food and Drug Administration, the number of suggested immunizations on the childhood vaccination schedule more than doubled, raising the doses of mercury that some children received to levels that far surpassed federal standards for mercury exposure. (The standards were based on methylmercury, the type emitted by coal-burning power plants. Ethylmercury, which makes up nearly half of thimerosal by weight, is a closely related compound. To date, ethylmercury has received far less study, and scientists disagree on whether it’s as harmful as methylmercury, though both are considered neurotoxins.) Until the late 1990s, health officials were unaware of the total amount of mercury children were receiving in their vaccinations. It’s not unreasonable to ask how this went unnoticed, and unreported, for so long. The answer is simple: no one had ever done the arithmetic. When scientists did, the U.S. Public Health Service recommended that vaccine manufacturers phase out thimerosal from children’s vaccines in 1999 as a precaution. It was careful to note, however, that “there are no data or evidence of any harm.” As it stands, the preservative, which allowed drug manufacturers to supply vaccines in multidose vials (the thimerosal-free, single-dose versions are costlier), has been eliminated from most immunizations, excluding some flu and tetanus shots. During 1999 and 2000, the thimerosal link was quietly under study by the CDC, and, as shown in internal memos and meeting minutes, health officials were deeply concerned about what they might find.

Another Child with Autism Wanders. Drowns. Where is the Outcry?

Managing Editor's Note: This story below brings into focus the reason AofA exists. For the children (of any age) with autism and their parents, families, who live with a reality few Americans acknowledge having been fed an ever increasing diet of happy blue stories that skirt the very real hardships of autism. Often I've seen the comment, "Well you can't compare autism to (insert serious medical diagnosis here) because it's not life threatening.  Really? Autism kills from the outside in. I encourage everyone to support National Autism Association's Big Red Safety Box wandering safety program.  Our prayers go out to the Lynch family.

By Anne Dachel

Are we all aware now? I have no words.

Searchers found the body of a missing 9-year-old San Francisco girl in a creek near her family Lake County vacation home Wednesday, authorities said.

Mikaela Lynch, who had autism and the mental capacity of a 1-year-old, was last seen in the backyard of the home on Harbor Drive in Clearlake on Sunday around 1:30 p.m. She had been playing on a trampoline with her younger brother but was left alone briefly when he ran inside to avoid a bee, police said.

Her body was found in nearby Cache Creek by dive team members just before noon, said Clearlake Police Chief Craig Clausen. Foul play is not suspected. Clausen said it appears she wandered into the creek.

"It's really tragic," said police Sgt. Nick Bennett, adding that Mikaela was "a sweet little girl. We had hopes it might turn out differently."

Searchers had looked in the marshes near the home because Mikaela, who did not speak but could communicate through basic hand signals, was "attracted to water," police said.

Dachel Media Update: Purdue, DSM-5, NVIC

By Anne Dachel

May 15, 2013, WISH-TV, Indianapolis, IN: Purdue seeks infants for child autism study

May 14, 2013, TV8 Grand Rapids, MI: More autism, less special education--Fewer kids in special ed despite rise in diagnoses

May 14, 2013, Albert Einstein Medical College: Autism Community Awaits DSM 5 Changes

May 10, 2013, NVIC: Desperate Times for Vaccine Risk Denialism

 

Columbia Journalism Review Casts Eye on Vaccine Safety Writers

By Anne Dachel

May 1, 2013, the Columbia Journalism Review published the story, Sticking with the truth--How 'balanced' coverage helped sustain the bogus claim that childhood vaccines can cause autism by Curtis Brainard
 
From the title of the article, it was clear that Brainard was on the attack against those who would give equal coverage to the idea that vaccines can cause autism.  He criticized the 1998 Lancet article by Andrew Wakefield because it added to parents' fears about vaccines and autism.  Brainard also said that the increase in the number of vaccines in the childhood schedule and the stunning increase in autism was "only coincidental."
 
According to Brainard, media sources covering the controversy were "squandering journalistic resources on a bogus story."  And not only that, "there is evidence that fear of a link between vaccines and autism, stoked by press coverage, caused some parents to either delay vaccinations for their children or decline them altogether."  
 
What seemed most disturbing to Brainard was the fact that this subject just won't go away. "Those who never bought the vaccine-autism link-in the press and elsewhere-have been waiting for the proverbial nail in the coffin on this story for years, and it never seems to come."  It's clear to him that the reason this nagging theory is still around has to got be because the media continues to cover it. 
 
"'Concern about adverse events, particularly related to media reports of a putative association between vaccinations and autism and of the dangers of thimerosal, appeared to play a major role in the decision of these families to decline vaccination,' according to a 2006 study published in The New England Journal of Medicine."
 
Brainard seemed baffled that the public continues to doubt the safety claims. "Major reports from the Institute of Medicine...in 2001 and 2004, rejected the link and drew a lot of coverage, but the level of concern among the public remained on the rise."
 
The reason why the controversy lingers on must be because the press keeps bringing it up.  Brainard cited Robert Kennedy Jr's Deadly Immunity along with other examples.  He was especially upset by what David Kirby and Dan Olmsted have written.
 
"But it was the work of two veteran journalists, not Kennedy's shameful piece, that really kept the story simmering. In February 2005, St. Martin's Press published Evidence of Harm by journalist David Kirby, in which Kirby didn't reach any specific conclusions about a link but presented a litany of parental suspicions that suggested one. And that winter, Dan Olmsted, a senior editor at United Press International, turned out a series called 'Age of Autism,' for which he conducted an admittedly unscientific survey that found lower autism rates among ostensibly unvaccinated Amish communities."

Autism One Presents Age of Autism: Year in Review & Debut of an Important New Video

Join us at 8:30am on Saturday, May 25th at Autism One in the Louvre room. Mark, Kim, and Dan will review the year and then?

We are going to debut a new 9-minute video, "How Mercury Triggered the Age of Autism."  We made this video (with thanks to Natalie Palumbo for her film making expertise) for you to use as a tool to educate family, friends and colleagues about the autism epidemic in a quick, easy to understand format.   You will be the among the very first to view it.

We'll also talk with Teresa Conrick about her discovery of the first-born child with an autism diagnosis and the ongoing hunt for the Kanner 11.

We look forward to meeting friends, old and new, and thanking you for your support of AoA throughout the year, in person. 

Dachel Media Update: Screenings, Services

By Anne Dachel Read

Anne's comments after the jump:

May 13, 2013, Wayne County (NY) Post: Wayne ARC leads the way in autism services

May 13, 2013, Wall Street Journal: Autism Center Is Set to Target Need---A New Mental-Health Campus Is Opening in Westchester Campus


May 13, 2013, Washington Post: Kennedy Krieger offers free screenings to infant siblings of children with autism

May 13, 2013, New York Times: A Trudge to the Roots of Autism

Protocol 007: Merck Denies Fraud, But Feds Seek New Mumps Vaccine as Cases Spread

By Dan Olmsted and Mark Blaxill

Scattered mumps outbreaks – possibly underreported by the CDC – are reinforcing longstanding concern that Merck’s mumps vaccine is failing far more often than it should.
 
The outbreaks come as Merck defends itself in federal court against a whistleblower lawsuit filed last year claiming it faked data to mask the low efficacy of the mumps component of its MMRII vaccine. Within the company, according to the suit, the effort was known as Protocol 007.
 
In a filing earlier this year, Merck denied wrongdoing and said it stands by its claim that the vaccine is 96 percent effective. It asked the judge to dismiss the claim and pointedly noted that U.S. Justice Department officials have so far not joined on the whistleblower's behalf -- a move that often spells the difference in court.
 
But the government seems anxious despite Merck’s reassurances – just as the whistleblower suit was unsealed, Age of Autism has learned, health officials awarded almost $2 million to a research team at the University of Georgia. The goal: Find a much better mumps vaccine, in a hurry. “The fact that outbreaks had occurred in populations with over 95% coverage of two-dose [mumps] vaccine strongly suggests that the current vaccine is not effective,” according to project information filed by Biao He, a researcher at the University of Georgia who received the $1.8 million grant.

According to a recent filing by the whistleblowers: "The government has not joined in Merck's current motion [to dismiss the case] and has made no decision on the current Complaint. Instead, it has taken a 'wait and see' approach requesting that it be served with all pleadings, motions and court orders in this case, and that its consent be obtained before the case is settled, dismissed or discontinued.

"While the Department of Justice has chosen to sit on the sidelines of this case for now, both the FDA and its sister agency, the National Institute of Health, have since the complaint was filed begun to take steps to address the failure of Merck's mumps vaccine. The FDA has initiated its own study to determine the vaccine's efficacy, acknowledging that the recent mumps outbreak 'indicat[es] lower vaccine efficacy than previously estimated.' The NIH has gone even further. It is funding the University of Georgia to develop a new mumps vaccine because the recent outbreaks 'strongly suggest that the current vaccine is not effective.'"

Merck continues to state that its mumps vaccine is highly effective, as shown in this ad filed with the court by the whistleblowers; it claims 96 percent efficacy for the mumps portion of the MMRII -- in other words, 96 out of 100 people who get the shot are protected from the mumps virus: 

Dachel Media Update: Mother's Day, DSM-V

By Anne Dachel Read

Anne's comments after the jump.

May 14, 2013, Telegraph (Australia): Crackpot crusaders putting our kids at risk

May 12, 2013, Rock Hill (SC) Herald: Mother's Day difficult for SC mom with autistic son

May 12, 2013, New York Times: Why the Fuss Over the D.S.M.-5?

May 11, 2013, U of Houston-Victoria Advocate: UHV to offer new autism concentration for educators

May 10, 2013, Seattle Times: Oregon lawmakers wade into vaccination debate

May 10, 2013, WFTV Orlando FL: Outgrowing autism

May 10, 2013, HLN-TV: Autism becomes the new normal for five moms

Did Paul Offit Link Vaccine Exemption Rights To Pedophilia?

By Anne Dachel

I was angry to see Paul Offit's name under the May 9, 2013, Philadelphia Inquirer headline , "End religious exemption." 
 
I was furious to realize that there was a subtle implication that exempting parents are on a level with the actions of Jerry Sandusky. 

"The Jerry Sandusky scandal at Penn State generated a public outcry for stronger laws against child abuse and neglect. Several bills have been introduced that purportedly provide a 'complete overhaul' of Pennsylvania's child-protection laws.

"For example, Senate Bill 20 makes it clear that any adult who 'causes serious bodily injury,' either by 'kicking, biting, stabbing, cutting, or throwing a child,' or "'orcefully shakes or slaps a child under one year of age,' or 'causes serious physical neglect,' or 'causes a child to be near a methamphetamine lab,' or 'operates a vehicle in which a child is a passenger while driving under the influence of alcohol,' has committed child abuse.
"Unfortunately, one group of children has been left behind.

"The bill states that 'if a child has not been provided needed medical or surgical care because of seriously held religious beliefs of the child's parents ... the child shall not be deemed to be physically or mentally abused.' In other words, if parents decide not to give their children antibiotics for meningitis, or insulin for diabetes, or chemotherapy for cancer, or surgery for intestinal blockage, they won't be held accountable. According to the bill, parents are abusive if they slap their 1-year-old child, but not if they withhold lifesaving therapies."

Offit talked about parents who didn't have children vaccinated during a measles outbreak 1991.  He also gave examples of parents who refused various medical treatment because of their religious views.

Polish Study: Neurologic Adverse Events Following Vaccination

Prog Health Sci 2012, Vol 2 , No1 Neurologic adverse events vaccination
129

Neurologic adverse events following vaccination

Sienkiewicz D.*, Kułak W., Okurowska-Zawada B., Paszko-Patej G.
Department of Pediatric Rehabilitation of the Medical University of Bialystok, Poland

The present review summarizes data on neurological adverse events following vaccination in the relation to intensity, time of onset, taking into account the immunological and non-immunological mechanisms. The authors described the physio-logical development of the immune system and the possible immune system responses following vaccination. Toxic property of thimerosal - a mercury-containing preservative used in some

vaccines was presented. The neurological compli-cations after vaccination were described. The role of vaccination in the natural course of infectious diseases and the current immunizations schedule in Poland was discussed.

Read the study Neurologic Adverse Events Following Vaccination.

Ten Little Fingers

By Cathy Jameson

While anticipating the birth of my first child, someone told me that new moms shouldn't worry while pregnant.  It isn’t healthy for the pregnancy or for the baby.  As long as the baby has ten little fingers and ten little toes, that's all a new Mom should worry about. 

…ten little fingers

ten little toes

a new one to love

with a small button nose

skin that’s soft, pink and new

love so strong

from me to you…

Ten little fingers, ten little toes.  It sounds so simple, so pure an so peaceful.  As a first-time mother, that’s all I thought to hope for. 

I don't think anyone can fully prepare themselves for where motherhood will take them.  Not until they are fully immersed in that role will they understand it or appreciate it.  My journey as a mother has morphed greatly and goes far beyond what my imagination could ever reveal.  From expecting them to being able to hold each my children in my arms after their births, I never knew how having children would change me.  All of my children, especially Ronan with all of his severe needs, helped me mature and evolve into the mom I am today.  Worries have come and gone, but the love I have for my children has only grown stronger.

The thoughts and hopes that I had as a new mother are quite different than the ones I cling to now.  They have nothing to do with having ten fingers and toes and certainly don’t compare to complicated issues that cross my mind now.  Before Ronan got sick, I had limited knowledge of chronic diseases and how childhood ailments can take a turn for the worse.  I never knew about life-altering reactions from medicine or the complexities of an autism diagnosis.  Now, though, when those subjects bombard my thoughts, I can’t help but be reminded of every concern I have for Ronan and for his future.  I question things that I may never find the answer to.  I wonder if Ronan will ever speak again.  I worry about his safety and his health.  I contemplate how I managed his needs.  I examine my strengths and weaknesses and how they will affect Ronan and his future.  I face my fears in my thoughts.  I pray for strength to handle it all.  I do as much as I can always hoping it’s enough. 

Autism and Motherhood It's 1998 Every Day

By Kim Stagliano

My 18 year old daughter Mia made me this pin in preschool, 1998.  I wear it every Mother's Day with pride. Little did I know that my three year old daughter would remain very much a child, even as her body grew into that of a beautiful young woman.  This pin stabs me in the heart with every passing year. Not because of my aging eyes and fumbling fingers.

On this Mother's Day, I ask you to say a quick prayer for all Moms who live with the nagging ache of worry, even as they live, love and laugh. It's there behind our smiles. Mine. Yours. I'll say a prayer for you, and wish you a very Happy Mother's Day.

2013.

KIM

Natalie Palumbo's Gripping Autism Public Service Announcement Wins First Place

Natalie's PSA took FIRST PLACE  in the Notre Dame High School National Film competition. Congratulations, Natalie. You're an inspiration and you represent autism siblings and Age of Autism in an artistic and professional manner that will take you far.  Kim

By Natalie Palumbo

I am 18, a senior in High School, and the younger sibling of a 22 year old brother with low verbal autism.  I am busy preparing for graduation, and have good news to share.  I was accepted into the Motion Design major at Ringling College of Art and Design, which is my first choice for college.  I am currently taking a media arts class at a neighboring high school, and it has been an amazing experience. 

The Public Service Announcement that I made for class called “Age Of Autism” was submitted into the Notre Dame High School National Film competition by my teacher Ms. Esposito.  I received word last week that my PSA will be among the films being screened in Los Angeles this April.  Only runner ups and winners are screened.  Ironically, it is the same day as accepted students’ day at Ringling College.  Due to the cross country distance, they are sending me my award certificate in the mail.  I am thrilled and very grateful to be part of the screening, and am very excited to see if it won.  The support I’ve received for my PSA has been wonderful, and I’ve received many lovely notes and letters from families that told me they finally felt represented.  I worry about my future, and work very hard to do well.  I know my brother will need me, and I want us to have a good life together. 

Team Zoccoli Presidential Traverse 23 Mile White Mountains Hike For Autism Action

On June 15, Nick, Nicholas and Jonathan Zoccoli are going to hike through New Hampshire's White Mountains in a 26 mile Presidential Traverse to raise money for autism action through Age of Autism.  Nick is uncle, and Jonathan and Nicky are cousins, to a terrific youngster with autism - whose Mom is a close friend of AoA's Kim Stagliano.

Nick Zoccoli, a longtime and generous supporter of AoA,  has offered to dedicate the hike to his nephew and to donate proceeds raised to AoA.

From Section Hiker: "One of the great hikes in the White Mountains of New Hampshire is called a Presidential Traverse. It’s so-called because hikers climb all of the mountains in the  Presidential Range of the White Mountains in one continuous hike that’s nearly 23 miles long with close to 9,000 feet of elevation gain."


CLICK HERE TO DONATE to team Zoccoli via PayPal - no account required.  (Firefox & Chrome users may experience difficulty. Use Yellow donate button on right sidebar)

Click the YELLOW DONATE BUTTON on the right sidebar.

Send a check payable to Age of Autism c/o Team Zoccoli 41 Northfield Lane, Berlin, CT 06037

 

Presidential Traverses are usually hiked from north to south, climbing the following sequence of peaks, in order to get the greatest elevation gains over with early on, with hikers starting before dawn and often hiking into the night.

1. Mt Madison – 5367 feet
2. Mt Adams – 5774 feet
3. Mt Jefferson – 5712 feet
4. Mt Clay – 5533 feet
5. Mt Washington – 6288 feet
6. Mt Monroe – 5384 feet
7. Mt Franklin – 5001 feet
8. Mt Eisenhower – 4780 feet
9. Mt Pierce – 4310 feet
10. Mt Jackson – 4052 feet

By Anne Dachel

May 10, 2013, Toronto Globe and Mail: Here's an autism statistic: family

May 9, 2013, WCSH-TV Portland ME: Autism training preparing first responders

May 9, 2013, WLBZ2 Bangor ME: Keeping people with autism safe

UK Department of Health Deliberately Exposes Vulnerable Population to Flu Infection

By John Stone

Is the vaccine program there to prevent harm or to foist commercial products on a captive market at the public expense? The parrot cry of health officials trying to bully citizens into vaccinating is that they are putting other people at risk, but it is very easy to call their bluff when they pursue a contradictory policy over nasal flu vaccine and children, a vaccine which sheds and will put in harm's way immune-compromised people and younger siblings. From September this year in the United Kingdom children above the age of two are to be offered a nasal influenza vaccine ‘Fluenz’ which is the same as  the ‘Flumist’ many American children already get, and this is to be rolled out for all schoolchildren next year. Here is the text of my recent letter to the British Medical Journal, so far unpublished:

It is deeply disturbing that this senseless project ploughs forward regardless. While government seems to have seized the agenda over influenza vaccination by unwarranted claims of (influenza) mortality [1,2] there are definable risks to the use of nasal influenza vaccine. Manufacturer's product information states among other things [3]:

"FLUENZ should not be administered to children and adolescents with severe asthma or active wheezing because these individuals have not been adequately studied in clinical studies.
"Do not administer FLUENZ to infants and toddlers younger than 12 months. In a clinical study, an increase in hospitalisations was observed in infants and toddlers younger than 12 months after vaccination (see section 4.8).

"Vaccine recipients should be informed that FLUENZ is an attenuated live virus vaccine and has the potential for transmission to immunocompromised contacts. Vaccine recipients should attempt to avoid, whenever possible, close association with severely immunocompromised individuals (e.g. bone marrow transplant recipients requiring isolation) for 1-2 weeks following vaccination. Peak incidence of vaccine virus recovery occurred 2-3 days post-vaccination in clinical studies. In circumstances where contact with severely immunocompromised individuals is unavoidable, the potential risk of transmission of the influenza vaccine virus should be weighed against the risk of acquiring and transmitting wild-type influenza virus."

Best of: Wakefield vs. Brian Deer, Fiona Godlee and the BMJ: Dispatches from the Front

Managing Editor's Note: We ran this post by Dan Burns last March.  Here it is as again as a complement to the post we ran yesterday,  Andy Wakefield's Day In Court.

By Dan E. Burns

This is Chapter One in a series of occasional dispatches from An Independent Me, a charity for ASD adults on the front of the autism epidemic. Read the PROLOGUE HERE.

Zero and I stomped down the parking garage stairs near the Travis County Courthouse, footsteps ricocheting through the concrete ramps.  Above us, the courthouse stood like a stone sentinel, caressed by shadows of summer foliage, live oaks and panicles of crepe myrtle, this July day in 2012.

The hearing was about jurisdiction. Dr. Wakefield was suing BMJ – the British Medical Journal – for libel. Hack writer Brian Deer, commissioned by the Sunday Times of London, had called Dr. Wakefield a fraud; and Fiona Godlee, editor of the BMJ, reprinted the libelous Times article, embellished it, and profited from it in promotions throughout the United States, including Dr. Wakefield’s home state of Texas. Would the lawsuit play out in a Texas courtroom, or would the proceedings be remanded to England, home base for the libelers? “Mr. Wakefield has been found unfit to practice,” the BMJ team argued. “Why should a Texas court decide what has already been litigated in England?” Beyond that today rumbled the larger question: Who is the fraud, Wakefield or Deer?

I remembered a scenario Dr. Wakefield had created for me, first time we met. “Imagine a village,” he said, “where young adults with autism could live and work, enjoy life, continue to heal, and give back to society. Imagine the residences, the clinic, restaurant, gift store, microenterprise center, the gardens, the wellness center for conventions and outreach. Hang a sign on the gate that says ‘Autism Village.’ Now come back in thirty years. The village is abandoned and the sign is rusty, swinging in the wind, because the epidemic has ceased to exist. That’s the future I’d like to see. Let’s make it happen.”

Dachel Media Update: Men Falling Behind

By Anne Dachel

May 8, 2013, Fortune Magazine:  6 reasons why men are falling behind women

May 7, 2013, New York Times: Autistic and Coming (Reluctantly) of Age

Andy Wakefield's Day in Court Coming This Month

Editor's Note: The judge has set May 22 for an appeal in Austin, Texas of the jurisdiction issue in Dr. Andy Wakefield's defamation suit against the British Medical Journal, Editor Fiona Godlee and "journalist" Brian Deer. The case was dismissed by a judge who said Wakefield was not entitled to sue the British publication in Texas, but Wakefield appealed.  Supporters of Dr. Wakefield will be in attendance.

See here for the latest filings, and stay tuned for updates. -- Dan Olmsted

 

 

Musician Ry Romero Debuts New Single for Generation Rescue

© Incite Photography / Ysa Adams

Musician Ry Romero Debuts New Single for Generation Rescue
 
We recently came across a very talented supporter of Generation Rescue. His name is Ry Romero, a young singer-songwriter from Los Angeles, who stopped by our office to serenade us with an original song he had written. The song is titled, “Through the Storm.” Just recently, he debuted the song at Rock Now for Autism, our acoustic benefit concert at Boulevard3 in Hollywood, CA. We are glad to share with you that Ry’s new single is now available (iTunes , Amazon, etc.) and can also be heard in our new PSA.




“Through the Storm” is a song I started working on over two years ago. The idea came to me at a time when I saw people that I care about going through hardships in their lives. Being that almost every song that I have written is a love song, I wanted to do something completely different from my norm. I began with putting a melody together and finding a nice chord progression that I felt symbolized a motivational song. Once I found the sound that I was looking for, I began working on lyrics. I knew that the message I wanted to get across to my audience was that this was a song telling a story. I wanted the song to be expressed through the eyes of a person in need and the person who was there for them.

I remember how many times the lyrics had changed writing the song. I couldn’t seem to find the words to express how I wanted my story to be told. I continued working on the song for the next two years, and after struggling to find the words to say, I took a break from it. Early last year, I came across my friend Zack who told me about his work with Generation Rescue. I found it very motivating that a person of his age had accomplished so much and stood for a cause that I have always supported. Zack and I became good friends and overtime we both began to help one another with projects that we both had a passion for. He knew how much I enjoyed music and knew that I wanted to make a difference. One day, Zack approached me with an idea of me possibly donating a song to Generation Rescue. I thought it was an amazing idea! I saw this as an opportunity of doing my part to support the movement. I always wanted to give more of myself to the cause, but I never knew how.

Dachel Media Update: Outgrow Autism?

By Anne Dachel

Read Anne's comments after the jump.

May 8, 2013, Rochester (NH) Times: Autism awareness 911 registration event May 15 in Rochester

May 7, 2013, Jacksonville FL News4: New study suggests some kids can outgrow autism

May 7, 2013, Cleveland Plain Dealer: Self-taught beer historian visits Strongsville on way to accepting autism 
 

Autism One Features Julie Obradovic: Taking it to the Teachers

Meet Julie and the Age of Autism team at Autism One later this month in Chicago. Register today!

By Julie Obradovic

A few weeks ago, I had the opportunity to speak on a graduate panel. I had been asked to do so by one of my professors in Educational Administration. I will receive my second master’s degree in education next week.

Back in November, I was in his class the night of the congressional hearings on autism. For the first time ever, I kept my phone out and peeked at the emails and texts coming in from friends who were there. I could hardly pay attention, and at one point, I did one of those weird silent “YEAH!” moves with my fist pumped at the most inopportune time. One of my classmates looked at me like I was nuts.

My professor made a comment that night. Something to the effect of never being able to Google his name, and how he could care less. He told us that if we really wanted to get into administration we’d better be ready to be disliked, to take a stand, and to fight for what we believe is right.

I snickered. Been there, done that, I thought.

Our task that night was to write about it, and so I did. I told the whole sorted tale of the last ten years of my life. How it happened, what I did about it, and where I am today. And then I submitted it hoping I wouldn’t get dropped from the class. You just never know what people are going to think.

When we got our papers back, he asked to speak with me privately.

Oh. Crap. Here it comes.

But I was wrong. He wanted to meet me for coffee and learn more.

Video Modeling for IEP Meetings With Attorney and Advocate: Your Special Education Rights

Managing Editor's Note:   There is a terrific new FREE service to assist families with IEP meetings from early intervention to adult services transition (see video below.) Based in Connecticut, I'm proud to say that I know Julie Swanson and Jen Laviano and how they have helped so many families with their special ed legal rights.  They use video modeling (sound familiar?) to show YOU what words to use in an IEP meeting and how to translate some of the "jargon" educators will use to avoid giving your child services.  Membership is FREE.  You can register at Your Special Education Rights.

What is YourSpecialEducationRights.com?

This site is the first and only video-based special education resource for parents and advocates. The site was developed by Special Education Attorney Jennifer Laviano, Disability Rights Advocate Julie Swanson and Mazzarella Media,one of the nation’s leading educational content providers. The site’s primary purpose is to empower parents with the knowledge and understanding they need to advocate for their child’s education through engaging video programs. Never before have parents had the ability to learn about their rights in such a practical, user-friendly format. Members have access to a continuously updated video library, blogs and community forums with other parents and experts.

 


Why did we create YSER?

“I’ve had so many parents tell me over the years that nobody at the school is listening to them,” says Julie Swanson, Special Education Advocate. “I know how intimidating it can be to attend an IEP meeting – you’re in a room full of people and feel completely outnumbered. We’re here to empower parents with information so they feel prepared for that next IEP meeting.”
 
“One of the hardest things for me to hear from parents is that their lack of knowledge has resulted in a lack of service for their child,” explained Jennifer Laviano, Special Education Attorney. “Julie and I are absolutely convinced that the outcomes for kids whose parents know their rights and are able to exert them, are far better than when they don’t, which is why we came up with this site.”
 
Bios (Click below the jump for two videos on adult transition.)