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Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

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November 2010 #1

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

1. Find a TACA Meeting

Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

2. Join Us for Coffee Talk!

Come and receive some extra support or to

chat all topics related to autism and meet

other TACA families at these informal,

monthly get-togethers.

3. We're Missing Grandma Sharon So Much

It is with deep sadness that I write you all that Grandma Sharon Swafford passed away October 29, 2010. Her battle against lung cancer was strong. Her legacy of love & gifts are immeasurable. Words cannot express my gratitude to her for all her hard work. Her family and TACA family will miss her beyond words.

Many of TACA families have met Sharon at conferences, the TACA office, a meeting or coffee talk, or her love filled advice via phone or email. Some of Sharon’s accomplishments include: Former Chapter manager, Coffee talk hostess at many Southern California locations,  Volunteer coordinator of Long Beach and fill in for several other chapters as needed, Mentoring to parents and grandparents, GFCFSF demonstration cook & recipe converter – with some of the best tasting end products, Conference volunteer, Key event volunteer, grandparent, mom, wife, & friend. Before Sharon started “officially” working for TACA she volunteer thousands of hours driving back and forth from Escondido to Costa Mesa, CA 4-5 times a week for well over a year. Her biggest claim to fame was procuring much needed TACA foundation items for pennies on the dollar and beaming with pride on her cost savings proclaiming “that leaves more money for the TACA mission & families!” 

Sharon had to step down from her TACA efforts in November 2009. The office misses her humor, her advice and love for the families we all serve.  She believed in children with autism and knew recovery was possible based on her family’s experience. To get to know Grandma Sharon – take 30 minutes and watch a video how she helped recover her grandchildren. (Click on: Video = Family 1)

Sharon has done much for TACA and families living with autism. It is time we honor her in return. If you have a Grandma Sharon story I would love to hear about it. We are creating a special gift for her family to honor her efforts.

On an 8 1/2 x 11" paper (or multi pages) please write your favorite Grandma Sharon story - please include any pictures that you have. Mail it to me at the TACA office 3070 Bristol Street #340 Costa Mesa CA 92626 or email. All stories are due by November 11th to be included in the gift for the family.

Her services are open to everyone who wishes to attend:
Date time: Sunday, November 14th at 3pm
Dessert Reception to follow

Location:
Bethel Baptist Church
855 Brotherton Rd.
Escondido, CA 92025

Everyone and anyone is invited to attend. She wanted a celebration and laughter of her life.
I can barely type these words. It pains me so. I still cannot believe it.

In sadness,
Lisa Ackerman @ TACA

4. Pepsi Refresh - Vote for TACA today and everyday in November!

A vote for TACA is a vote for $50,000 of
Real Help Now for families affected by autism

You can help TACA provide financial assistance to these families to ensure that their child gets Real Help Now. Help us change the life of a child – one click everyday is all it takes.

Vote from your mobile phone

Text to 73774 and in the body of
the text put TACA Code: 103042.

Please help us spread the word!

• Forward this email to all of your family and friends.
• Send out reminders on Twitter.
• Promote on your Yahoo! groups.
• Put a widget on your website or blog.
• Vote every day!

5. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

6. Autism & Vaccines: What I Don't Want to Believe

By Julie Ryan Evans, CafeMom.com

I don't want to believe Kim Stagliano and her concerns about a possible link between autism and vaccines.

I want to write her off as a parent who's just looking to blame someone or something, or as a parent who missed the signs that were there all along.

I want to cling to studies and reports I've read that say there is no link between autism and vaccines, that the rise in incidents in recent years has to do with better diagnosis of the disease.

I want to believe that vaccinating my children is the safest choice, that people are being scared in the wrong direction by avoiding vaccinations and point to things like the whooping cough epidemic in California as proof that vaccines are necessary.

But after reading Stagliano's book, All I Can Handle: I'm No Mother Teresa, I'm rethinking everything I want to believe about autism and how children are being stricken by it.

Or perhaps better put, it's bringing back to the surface so many fears I've tried to quell over the years as I've made choices affecting my children.

Stagliano has three daughters on the autism spectrum -- Mia, Gianna, and Bella -- and she believes there could be a link between the vaccinations they received and their autism.

Hers can be a controversial position -- even among those in the autism community -- to put it mildly. Many get uncomfortable, exasperated, angry even by those who continue to explore the idea of an autism-vaccine link.

The question is: Why? Why not at least listen to a mother who has seen first-hand the progression of the disease in her daughters and spent more than a decade researching it and connecting with other families who have seen a similar progression in their children after receiving a vaccine?

In a world where we mistrust pretty much every industry and corporation, including pharma, whose drugs are often recalled and given black-box warnings for their severe side effects, it strikes me as curious that the public is willing to assume that vaccines are safe for everyone at all times and that those of us who question their safety are the kooks.

Reading her book took her firmly out of the kook box for me.

She is educated and smart and went into parenting expecting a "normal" life, just like most of us. Only she got something much different. She has no other agenda than helping her children and others like them.

If you're looking for a motive, then one can be found by those on the other side of the debate -- pharmaceutical companies -- who make bazillions of dollars from vaccines. That's not to blame pharmaceutical companies, but if you're looking for motive in this debate, they have one.

Parents like Stagliano? Not a motive in sight.

Currently, one in every 110 children has autism, according to the CDC. That number has grown from one in 500 over the past decade. That is staggering.

In the book, she addresses many of the justifications and reasoning people use to dismiss the link between autism and vaccines. For example, regarding those who claim the autistic population isn't really rising:

Believe it or not, there are people (some with autism, some just lacking in empathy, others trying to save their own political, professional, and economic arses) who want the general public to think autism has always been with us in these numbers, she states. If so, please look under your bed, chances are there is a gaggle of fifty-year-old autistic men hiding there.

As for better diagnosis:

Some people claim it's just better diagnosis and/or what's called diagnostic substitution, renaming people who would have been called mentally retarded in 1965 are being labeled autistic today. Not even the last loser in the class at Tick Tock Tech Medical School would fail to recognize autism in the children I see every day. It doesn't look like cognitive challenges or Down syndrome. It looks like autism.

Vaccines have done a great deal of good in this country, no doubt. They have virtually wiped out diseases that killed millions for years, but that doesn't necessarily mean they're entirely safe either.

Stagliano isn't advocating for parents to stop vaccinating or even necessarily using an altered schedule. What she is advocating for is education and answers. She says it's being "pro-informed" rather than anti-vaccine.

I can't say reading her book will change the fact that I vaccinate my children, since we've already progressed through the majority of them ... holding my breath the whole time. But if they were babies again, it may have made me do more research and give more thought to the issue before starting that course.

And I suppose that's what bothers people about the questions she raises too.

So many of us with doubts just close our eyes and take what feels like is a giant leap into a murky pool because our doctors and some studies say we should. To throw even more murkiness into the mix leaves us clinging desperately to the edge, immobile.

And sometimes it's easier if someone just pushes you in.

Regardless of where you stand on this debate, the book is worth reading. It's funny and raw and provides a real look into the world of autism.

From "crapisodes," a term she coined about the task of cleaning a child's feces from walls, carpet, and other non-toilet surfaces (a frequent occurrence in the lives of parents of many autistic children) to navigating services and attempting to treat symptoms, she and her husband Mark have felt the effects of autism as firmly as most anyone can.

It provides good insight into a world too many are entering whether you agree with her or not. And overall, it's an inspirational tale of taking life's challenges and meeting them head on, rather than letting them destroy you.

7. The Raw Reality of the Autism Omnibus Program: Rebecca Estepp Speaks Out

By Rebecca Estepp, Age of Autism

The Court of Federal Claims Bar Association held its annual Judicial Conference last week in Washington DC. On Tuesday, the Special Masters of the Vaccine Program were made available to the petitioners’ bar to discuss the decisions of the first six test cases as well as talk about the future of the Omnibus Autism Program (OAP). I decided to attend and prepared a statement to read during the question and answer period. Before the panel discussion started I was informed that statements would not be allowed. However, I was notified that statements could be made during the public comment portion of the Advisory Commission on Childhood Vaccines (ACCV) meeting on Thursday. I wrote this statement to read in front of the Special Masters and I am sorry that didn’t occur. However, I was able to ask the Special Masters questions during the panel discussion. And I am grateful for the opportunity to convey my frustrations of the OAP during the ACCV meeting:

My name is Rebecca Estepp. My son Eric is a petitioner in the Omnibus Autism Program. I attended one week of the Cedillo hearing in 2007 and one week of the Mead and King hearings in 2008. I am here today to provide you feedback on the Omnibus Program from the petitioner’s point of view. I am speaking for my family today, however, I would like you to know that my feelings are very similar to many of the 5000 families still left in limbo in this program.

My family is just an average American family. We are not radicals or troublemakers. My husband is a Lieutenant Colonel in the Marine Corps Reserve. Since 2003, he has been deployed to Iraq twice and Afghanistan once. My husband’s civilian job is with the federal government. So my family is almost identical to several people’s families sitting in this audience today. Except there is one major difference, my son had a vaccine reaction and then regressed into autism.

I have been in the autism community for ten years. In fact, I have the Omnibus Program to thank for starting me down the advocacy path. The first parent support meeting I arranged was with an attorney who educated parents of their rights in vaccine court. At that time, parents had no idea that this program existed. I speculate that is largely still true today.

From the beginning, it was obvious to my husband and I that Eric’s autism was caused by his childhood vaccines. Raising a toddler with autism is beyond challenging. We spent most of those early years just trying to obtain proper therapies and medical treatments for him as well as trying to survive Eric’s tantrums and sleepless nights. We were exhausted most of the time and my husband and I started losing faith in many of the resources that were supposed to be helping. Our pediatricians gave us pearls of wisdom such as spanking our son severely when he had tantrums. These same physicians also told us that Eric would be institutionalized when he was older. We had no faith in our insurance company as they denied claim after claim. And dealing with our local school district was anything but easy.

When I received a call in 2002 from an attorney who explained that parents like my husband and myself had a remedy in federal court, I felt reassured. I began to have a little more faith in our country. Later when I looked up “Vaccine Court” on the Internet, I was very happy to see the words, “intended to provide individuals with a swift, flexible, and less adversarial alternative to the often costly and lengthy civil arena of traditional tort litigation.” I thought that sounded promising.

As time went on, I began having serious doubts about vaccine court. First, since there was no movement in this program for years, I began to question the term “swift.” In fact, at this point “swift” is almost laughable. My son was in preschool when we filed his claim. He is now midway through his middle school career.

It was during this time, I learned of the absurd statute of limitations in Vaccine Court. As most of you know, the statute is three years. But it is not three years from the date of autism diagnosis. No, it is three years from the first symptom of developmental delay recorded in the child’s medical records. And get this; the clock starts at that time whether or not the doctor even mentioned the recording of a symptom to the parents. A simple scribble from a pediatrician of “motor delay?” or “speech delay?” can start the clock without the parent’s knowledge. Since many children do not receive a formal autism diagnosis for years, it is quite possible that their statute ran out before they could ever enroll in the Omnibus Autism Program because they had not received the autism diagnosis in time. This three-year statute of limitations is a miscarriage of justice and hopefully the Cloer decision will change it.

Then I found out that the petitioner’s attorneys were blocked from using the Vaccine Safety Data (VSD) to prove their cases. This is beyond belief. Taxpayers fund that data! The VSD information should be made public for everyone and anyone that wants to see it. It should especially be made available for the attorneys of children who are seeking compensation. If the vaccine program is so safe, why is the data being hidden? Where is the transparency?

As I mentioned before, I attended two weeks of the test case trials. It was at that time that I knew “less adversarial” was also a facade. I watched the DOJ attorneys use ad hominen personal attacks against the petitioner’s experts. They dredged up small professional regulatory technicalities from decades ago to discount the experts even though there was no jury. Thus it had no bearing on the testimony they provided. The respondent’s attorneys made being an expert witness for the petitioners as painful as possible which puts the petitioner’s cases in a tough spot. Now experts cannot justify going through a public flogging by participating in this court.

Case in point is Special Master Hastings’s decision in Cedillo. He wrote, “After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment.”

I couldn’t believe my eyes when I read that paragraph, “gross medical misjudgment?” Not only is Special Master Hastings, in my opinion, very wrong about Dr. Krigsman; but think of the message that was sent to experts that may have been considering offering their opinion in one of the claims. These people now know that they could be risking their career by helping one of the claimants. Why would any credible expert spend any effort in this court when a Special Master could smear their professional reputation?

And surely everyone in this room knows that cases rely on their experts. Think about the attorneys who may have been considering taking a case to vaccine court. Why would they want to try a case if they cannot get experts to back up their theories? So not only can the petitioners no longer access experts to back up their claim, but also these families can no longer find attorneys to try their cases. Ultimately, this leads to the legitimate scientific debate of vaccine injury being kept out of the program. I am beginning to think keeping a legitimate debate out of this court was the ultimate goal.

I must say a few words about Dr. Arthur Krigsman. In our house, Dr. Krigsman is a saint. Eric had horrible gastro-intestinal problems until Dr. Krigsman treated him. I know with all my heart that Eric would not be mainstreamed for part of his day today if it were not for him. Seeing the professional assassination of Dr. Krigsman as well as the other experts in the Cedillo decision from a Special Master broke my heart and made me incredibly angry.

However, I think what made me the most furious was Special Master Vowell’s statement in the Snyder decision. To refresh memories, Special Master Vowell wrote, “To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast.” As if it were not heartbreaking enough for families like mine to see the test cases fail, Special Master Vowell made sure that she added insult to injury by making a mockery of our children’s experience by comparing it to a work of fiction. I was stunned when I read her words and it demonstrated to me further the bias was there from the beginning in this court.

What I am about to say may shock some in this room, but I do not believe that every case of autism was caused by vaccines. In my years in the autism community, I have met parents that have told me that their child was delayed from the beginning. Guess what? I believe these parents, why would they lie? I also believe the thousands of parents who have described their child’s vaccine reaction. I am sure that one day that autism will be similar to diabetes with a type 1 and type 2 distinctions. I envision Type 1 autism being classified as “classic autism” and type 2 as “regressive” autism. The cases this court heard in 2007 and 2008 were, in my opinion, type 2 “regressive.” I believe the current epidemic of autism is largely made up of “regressive” cases. I think these test cases were unsuccessful because you all were thinking these “regressive” kids should fit the mold of the “classic” kids and they are most definitely different.

So yes, this court has been a set back for my family. As my husband so succinctly said on the day of the first test case decisions, “This is a court where government attorneys, defend a government program using government funded science decided by judges who work for the government, kids like Eric NEVER had a chance.” I am so glad that ABC, CBS, CNN, the AP, the NY Times as well as hundreds of other outlets throughout the world picked up that statement. It hit a nerve with many and exposed how unfair this court really is.

However, in no way do the decisions in this court make me give up. It certainly does not make my colleagues stop their advocacy for a safer vaccine program either. Pharma can keep bank rolling more and more PR campaigns and non-profit organizations with the “vaccines do not cause autism” message. But the fact of the matter is that 89% of parents rated vaccine safety as their number one health concern according to a study from the University of Michigan from just days ago. Pediatrics reported last March that 1 in 4 parents believe that vaccines can cause autism in a healthy child.

Do you want to know why this is happening? Because parents know that Hannah Poling’s vaccines not “causing” but “resulting” in her autistic symptoms made for the same outcome. It’s also because on the playgrounds, schoolyards, parks, and cul-de-sacs of this country; parents are reporting that their healthy child changed after their vaccines. There are so many affected children now that any PR campaign is going to be rendered useless versus the eyewitness accounts of vaccine injury. The nation’s parents are losing faith in the vaccine program. That’s not the fault of parents like me. That is the fault of the powers that be that continue to bury their heads in the sand and not respond to this dire situation appropriately.

The CDC reports that 1 in 110 children now have autism. I hope most of you know that rate is 12 years old. It is a statistic from the last century. It is amazing to me that the CDC can pinpoint where tainted eggs are in a matter of days but yet not be able to give our country an accurate rate of autism. I have a feeling they are sitting on the current number because the true incidence rate is probably so disturbing that the CDC doesn’t know what to do or how to spin the news yet. Needless to say, our country is going to be hit with a tsunami of disabled adults very soon. The vaccine compensation trust will be kept solvent because these 5000 claimants will never be paid out of that fund, but the government is going to be responsible for the care for these individuals for the rest of their lives. So in the end, are you really out ahead?

Taxpayers are going to have to pick up the tab for these kids. I don’t think that is fair. I think the people who made this mess should clean it up, meaning the federal government and the pharmaceutical companies should be grabbing some brooms and mops very soon. Together, you can take care of these kids. Pharma may have to forfeit a quarter or two of their billion dollar profits to do so, but so be it. They were the mess makers. And members of the government, you were pretty much duped by the pharma lobbyists when the Vaccine Injury Compensation Act was passed. Please take off your blinders and recognize the correlation between the expansion of the vaccine program once that pharma was assured of liability protection. When those vaccines were added, the schedule became bloated and the autism epidemic was born.

As mad as I am at this country for wiping its hands of this tragedy, I think it is ironic that I have more faith in it than you all do. You see, I think if we collectively work together we can take care of the individuals that were harmed and change the vaccine program to make it safer for all people. I just wish you all saw it the same way too. Until that time comes, I am going to keep advocating, helping families, and lobbying for a better future for the vaccine injured in our country.

8. SafeMinds - Except When They Do

Video about the conflicting negative claims of the press regarding the link between autism and vaccines.

9. Autism rates stabilize in Wisconsin schools: study

By Frederik Joelving, Reuters.com

(Reuters Health) - Autism rates could be leveling off at just above one percent of children, Wisconsin researchers suggest.

Between 2002 and 2008, they found the number of kids in the state's special education autism category nearly doubled. But the increase was only seen in those schools that started out with very few autistic kids, hinting that the statewide rates may be stabilizing.

Autism spectrum disorders, which range from mild Asperger's Syndrome to severe mental retardation and social disability, affect about one in 110 children in the U.S., according to the Centers for Disease Control and Prevention.

Nationwide, the number has been rising inexplicably over recent decades, and experts have argued about the reasons.

One possibility is that kids who used to be classified as mentally retarded, or just plain eccentric, are now getting an autism-spectrum diagnosis. Another, more worrisome suggestion, is that some environmental factor could be impacting children's brain development.

The new study hints that at least some of the increase could be due to schools putting more and more kids in the autism category, said Matthew Maenner, a PhD student at the University of Wisconsin-Madison, who worked on the new study.

"The prevalence of autism in special education doesn't seem to be the same everywhere, and it doesn't seem to be increasing at the same rate everywhere," he said.

The findings, published in the journal Pediatrics, show that the statewide rate of children receiving special education for autism went from five to nine cases per 1,000 over seven years.

Not all of these kids may have a medical diagnosis of autism, but Maenner said data on enrollment in special education programs are often used as a proxy for the prevalence of disabilities.

Schools varied widely in the number of autistic children they had. But over time, the gap narrowed from a spread of more than 24 times to less than two.

The schools with more than one percent autistic kids at the beginning of the study period saw little or no change.

Dr. John Harrington, an autism expert who was not involved in the research, said it looked as if the autism rate could be stabilizing.

"As you get better at identifying something, your numbers get less varied," he told Reuters Health. "Finally we can look at these kids and say, they are not just odd, they have a diagnosis."

Harrington, who wrote a commentary on the new findings, said he believed the same patterns could be found in other parts of the country.

But he stressed they don't necessarily mean that the national increase in autism is solely driven by better diagnoses.