Documenting Autism Recoveries

From Steven Edelson of the Autism Research Institute:

Dear ARI e-newsletter subscriber,

To date, more than 1,100 families with recovered or nearly-recovered children have registered on our website, www.AutismIsTreatable.com. Our list continues to grow on a steady basis! This is remarkable and much-needed news for all of those families working to help their own children recover from autism.

Starting next week, I will be driving through the Midwest to meet with families whose children have recovered or nearly recovered from autism. During these visits, I will be collecting records, reports and videos looking at children who were diagnosed with autism (and had the characteristic symptoms); and videotaping them to show how well they are doing now.

If your son/daughter has recovered or has almost recovered from autism, please consider participating in this project. The criteria for your child to be included in the project are:


1. Your child can no longer be diagnosed as autistic. Other people who meet the child would never have imagined that he or she once had autism.

2. Your child is no longer considered autistic by the school teacher and no longer needs an aide while attending mainstreamed school classes.

3. Your child has less than one hour per week of speech therapy (or none at all).

4. You can provide official documentation of your child's autism diagnosis from an established autism clinic, a government-sponsored assessment center, a hospital, a psychologist, and/or a physician.

(It is all right if your son/daughter is receiving help for reading and his/her verbal ability is slightly lower than his/her same-aged peers.)

If your child meets the criteria described above and you live on or near the route outlined below, we invite you to participate in the project. Since I will not be able to visit every city in the Midwest, I plan to stop for a day or two in several moderate- to large-size cities.

The tentative dates and driving route:


· July 16 to 26
o Hwy 10 E - from Phoenix to San Antonio
o Hwy 35 N - from San Antonio to Oklahoma City
o Two possible routes from Oklahoma City to St. Louis (not yet determined)
§ Hwy 35 N to 70 E
§ Hwy 44 E
· July 30 to August 10
o Hwy 55 N - from St. Louis to Chicago
o Hwy 90/94 W - from Chicago to Seattle
Note: I will be stopping in cities along the driving route that are not mentioned above.

A map of my route is located at: www.autism.com/roadtrip

If you do not live near or along this route and you are willing to drive several hours to participate in this project, ARI can pay for travel and one night of lodging costs.

Unfortunately, I will not know the exact dates when I will be in each city until three or fours days before my arrival. If your schedule is somewhat flexible, an ARI staff member will call you once the date, time, and place have been determined. The appointment should last about two hours.

When you meet with me, please bring:


· Most, or preferably all, of your documentation, including diagnostic assessment(s), on your son or daughter. I will bring a small photocopy machine with me to copy the documents. However, I would appreciate it if you could copy the documents in advance and/or scan them (pdf format) and save them on a cd-rom disc. ARI will reimburse you for any costs involved in copying your documents.

· If available, please bring any drawings your son or daughter made while he/she had autism as well as recent drawings.

· If available, please bring videos providing evidence that your child was truly autistic. I will bring equipment with me to copy most video formats. It will be very helpful if you can cue the videos to those behaviors often associated with autism, such as hand-flapping, rocking, echolalia, or self-injurious behavior.
Please note: Your son's/daughter's identity will remain anonymous when reporting these findings.

I look forward to meeting informally with groups of parents in the evenings. As Director of the Autism Research Institute, it is critical for me to stay in touch with the autism community, to hear your feedback on interventions, and the role that ARI and DAN! have played in your child's improvement. If you would like to arrange such a "get-together," please send an email to: recovery@autism.com.

We look forward to hearing from interested parents. Please call our office at: 619.281.7165 for more information. ARI's staff will ask you several questions that should take about 10 to 15 minutes. Your help, as always, is very much appreciated!

Best Regards,

Stephen M. Edelson, Ph.D.
Director

Bill Welsh of Autism Treatment Trust Shames UK Epedemic Deniers

Give'em Hell, Bill!

Undeniable Fact of Autism
The Scotsman
Wed 11 Jul 2007

It will come as no surprise to parents that one child in 58 in the UK has autism (your report, 9 July). The diagnosis of this devastating childhood condition has increased to such an extent since 1990 that many families are now affected. What is very worrying is that it has taken so many years for the "experts" to even concede that there is an autism epidemic.

Psychiatrists and psychologists and those within the traditional autism support and services organizations must bear the responsibility for this tragic state of affairs, as it is they who have continually denied what we have been witnessing with our own eyes. Foreign epidemiological studies that never survive close scrutiny are paraded as proof that an estimated 100-fold increase in autism is a mirage, or that the controversial MMR vaccine cannot possibly be implicated. The Scotsman article clearly helps illustrate what is a farcical and irrational stance in the face of the latest Cambridge University revelations.

By sustaining their standpoint, these interest groups have hampered clinical examination, and therefore medical treatments.

Autism Treatment Trust opened a consultation and treatment centre in Edinburgh in April 2006 and to date has comprehensively tested almost 200 autistic children. The results are very revealing. For example, heavy-metal toxicity is a common feature, with significantly high levels of lead, aluminium, tin and antimony present.

Inflammation, particularly of the bowel, is often identified. Immune dysfunction is a recurring theme. Food allergies and intolerances regularly emerge.

These abnormalities are all treatable. The simple fact is, autistic children are ill and have been failed at every turn.

This is a shameful episode.

BILL WELSH
President, Autism Treatment Trust
Great King Street
Edinburgh

The Impact of One Autistic Child

Walgreen VP Randy Lewis has an autistic son named Austin.

Austin changed Randy and Randy changed Walgreens and Walgreens changed the lives of more of the disabled and is now changing the way companies think about our children.

Contrast this with my last post. The solution to disability is not terminating the lives of the disabled.

... and also Walgreens Rocks!

The Blessings of a Least Of These Downs Syndrome Child

Virginia is the mother of a young adult with Downs. She grieves for the children who would have been her daughter's friends, had their parents chosen life.

This is the future of children with the genetic predisposition for autism if the gene track is put at the forefront of research.

Not healing our children, eliminating them.

I will say it again, disabled children are a blessing. In the pain and the struggle all the unimportant crap falls away and as Virginia notes, you have to slow down. Life becomes purposeful by necessity.

If we do not come together to serve these children, not the disorder, not the research community, not a medical program, not the pharma infrastructure, not non-profits, not even the parents, but the best interests of the child in front of you, and then the next child in line, then we just move faster and faster down the road toward moral bankruptcy.

What has happened to children with Downs must not happen to our children.

Virginia Arbery: Ending Down syndrome pregnancies bears all the marks of a pogrom
Dallas Morning News
09:06 AM CDT on Sunday, July 8, 2007

The year Julia was born in New Hampshire, 1987, I was the only geriatric pregnancy in the state issuing in a Down syndrome child. When I recovered from the pediatrician's insult – I was 37 – I learned from him that the other nine mothers in the state to deliver Down syndrome babies were still in their 20s.

I asked him why this was the case; conventional wisdom had led me to believe that the likelihood of giving birth to a Down syndrome child increased with maturity. When he told me that most woman over 34 usually had amniocentesis done to avoid giving birth to a Down syndrome child, I was stunned. After first being dismayed by – what to call it? – my demographic solitude, I soon turned my attention to what Down syndrome meant practically for my new infant. The books we quickly read, and the instruction from excellent social services helped us. Operating outside the realm of reason and structure were other powerful supports – call them graces.

At the end of Julia's first week, I learned that a publisher friend of ours had lost his wife to colon cancer. We had known them since graduate school, and the widower came over to tell us that his wife gathered their eight children around her bed to pray for Julia and us every night of that first week.

Even as she said goodbye to her own children and to the infant she had given birth to – an operation might have saved her and killed the baby inside of her – Susan was thinking about our challenge. I felt a liberating happiness over Julia, as did our little girls and their dad, for reasons too deeply private to explain.

Julia's life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom.

I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of "all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness."

We were all working for that fullest expression of life and happiness for our babies. I thought about the "prudent" mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child.

I will never forget Julia's first birthday with all her sisters around her. When we finished singing happy birthday, Julia put her hands together and clapped for the first time. Of course, we all cried on cue. Things that were so ordinary for the others became accomplishments – triumphs.

Julia slowed us down, and, instead of waiting for each stage of development to naturally emerge, we would coax it along, beckoning it with intentionality and art. She taught each child an intelligence of the heart, and she began to teach me patience.

Each member in our family could give a personalized account of his or her relation to Julia. Every daughter, for instance, has a perspective on her own vanity because of her. Julia expected to be 3 inches taller when she turned 16; I solved that problem by buying her 3-inch platform wedges.

But often it's not that simple. For instance, on the way to school she will pull down the visor mirror, look at herself, and say, "When I get to heaven, my eyes are going to be like my sisters', and I am going to be 5-foot-11, and my voice is going to sound like Kelly Clarkson's." I tell her that God made her the way she is, that she wouldn't be Julia any other way, that we love her just as she is, and that she is beautiful.

Of course, not everyone thinks that way. Some told me I should not make the same mistake twice – to have my tubes tied. I'm glad I didn't. Our one son was born after Julia, when I was 40, and our seventh daughter – now a sophomore at Ursuline – two years later.

Our son just graduated from Cistercian Preparatory School. Over the past few years, he and his classmates have helped to organize the bi-annual Down syndrome Dance. Will's friends love Julia, and she shamelessly loves them back. They'll all be here at her 20th birthday party Tuesday. She will probably sing "Desperado," as she did at the recent graduation of two of her sisters, belting it out on key and bringing the house down.

I understand that the American College of Obstetricians and Gynecologists is offering women a safer method than amniocentesis to determine whether a child has Down syndrome. The College makes the argument that it is more responsible to inform parents of their options beforehand so that they can decide whether or not to let the baby live.

This argument shakes me to the core, for it bears all the marks of a pogrom – the license to be aggressive against the most benign population conceivable.

Until now I have never been an advocate of special needs' issues. I have quietly reared my daughter and her brother and six sisters. But I can remain silent no longer. Twenty years ago, many of Julia's potential friends who are like her were intentionally eliminated, perhaps out of fear or perhaps out of a desire for a regular family with regular children.

I think of those thousands of children who will never change those families for the better. They will never be at a Down syndrome dance, never hug their grandmothers, unafraid of their wrinkles or of people's imperfections. Who will love us as well, as simply, with such undesigning candor if we invent a world protected from our difficult blessings?

Ironically, scientific work on turning off the additional action of the genes that cause cognitive impairment in Trisomy 21 now offers more hope than ever before, especially at Stanford School of Medicine's Center for Research and Treatment for Down Syndrome (dsresearch.stanford .edu). More research dollars are going into killing these children before they are born than into this noble project of helping them. And why? Because citizens value their freedom?

Are my husband and I less free because we might have Julia with us our whole lives? Hardly. We would probably be enslaved to many more false notions of reality. In any case, we must trust that there will be a meaningful work and life for Julia. Maybe one of her sisters will take her in. Maybe she'll live in a group home.

These are all decisions we will have to make as a couple, as a family and with Julia. These will not be easy decisions. One thing is sure, though: She is our defining blessing. How could we have known that in advance? To accept her full humanity is to accept our real selves in all our imperfections.

My son put it well in describing how Julia likes to personalize her lead pencils, tapping them on the table top as they become characters in her daily life – at school or at home. We will sometimes hear ourselves oddly repeated in her animated version of our loss of temper or other foibles. In describing this game Julia plays, our son wrote that as she taps her pencil people, she taps into us.

Virginia Arbery teaches in the Master of Humanities Program at The University of Dallas and is the mother of eight children. Her e-mail address is varbery@sbcglobal.net.

A Tribute to Autism Parents

Wendy Fournier of NAA put this together.

Thanks Wendy.

World Health Org Bans a Hep B Vaccine After Infant Deaths

WHO bans vaccine, sends experts to probe child deaths in Vietnam
Thanh Nien News

The World Health Organization has suspended the use of a Hepatitis B vaccine worldwide after three newborns died and another became seriously ill in Vietnam after getting shots in the last few weeks.

Nguyen Tran Hien, head of a council set up in Vietnam to investigate the cases, told the council’s first meeting that two international experts from the UN health agency would arrive in Vietnam Saturday to work with local investigators.

The cases occurred between April 23 and May 7 in Ho Chi Minh City, Ha Tinh Province, and Thanh Hoa Province.

One baby fully recovered after taking ill.

The WHO-approved vaccine is made by South Korea's LG Life Sciences and distributed in Vietnam through a UN program.

Earlier this month, Vietnam instructed all localities nationwide to stop using the vaccine.

WHO's Department of Immunization, Vaccines and Biologicals has asked that countries around the world stop using shots from the affected batches until the cause of the illness can be determined.

A Ray of Light at the U of Minnesota

I am back from my week off and I have missed much drama since I have been gone. The hostility continues to increase with the Wakefield hearing approaching, new charges that Autism Speaks is in bed with Pharma, and California wants to put the ACIP in charge of their vaccine schedule and give up their say on what will go into their own children.

As I catch up and sort all this out, I thought I would bring you something that encouraged me in it's non-polarizingness.

U Minn is setting up an autism research/treatment center that seems as if it will earnestly study biomed interventions like gfcf and chelation, and implement what they can discern might be working for children.

The article on it written by by Jeremy Olson of the Pioneer Press makes them sound like they are actually interested in finding out about what is going on in the bodies of our children, and what is working to make them healthier. I called Mr. Olsen to get his general impressions of their efforts, because I spend my emotional life bouncing between cynicism and optimism (is there such a thing as a cynical optimist?) when reading about main stream medicine's approach to autism, and he reports that they seem genuinely impressed with what Rick Rollens' MIND is doing and really want to model it.

So I am choosing to believe that U of Minn is not just engaging in fund raising spin and that they are gonna be real investigators. I look forward to hearing what their plans are, what they are going to look into first and how.

My advice to the U, because you know they are waiting on the edge of their seat for my advice, ("how will we be able to open this research center with out Ginger's help", they privately fret) ditch the mindset, "does this intervention work?" and think, "who does this work for and why?". Chelation, diet, HBOT, Zinc, B12, Antivirals all work (you have thousands of families out there that can show you their results), but not on all kids who have an ASD label slapped on them. Find a group of kids that are responding to a specific intervention and figure out why it is working for them.

Also... listen to mommies... they know what they are talking about.

The times they are a-changin'.

Any day now Julie Gerberding will call a press conference and say that after listening to parents stories and reading their research that there is a slight possibility that the vaccine schedule might be a tad too aggressive and just to be super safe they are gonna start rolling the schedule back a tiny bit and spacing out shots and screening kids before vaccination just to be sure they don't have any immune system abnormalities and maybe just perhaps free metal tests for all ASD kids!

It is coming... I can feel it in my bones!!!

I believe in the power of Christmas!!

Ginger Perine Taylor
"The Cynical Optimist"

U project's goal: a top autism center
Raising $2 million is an early step toward learning which treatments actually work
BY JEREMY OLSON
Pioneer Press
Article Last Updated: 07/08/2007 10:51:13 PM CDT

The University of Minnesota is raising $2 million to study and improve the treatment of autism, the nation's fastest-growing developmental disability, which afflicts an estimated 10,000 people in Minnesota.

Over time, the doctors leading this initiative hope the U will grow into a top U.S. autism center that evaluates the best available treatments, researches the next generation of treatments and studies the disorder's biological and genetic origins.

"We're trying, really, to get at the whole picture," said Dr. Michael Reiff, director of the university's clinical autism program.

In autism, the university is focusing on a disorder that is gaining national attention and public funding but remains shrouded in mystery, politics and controversy.

While behavioral therapy is known to help some autistic children, there is little proof of what medical therapies are effective. Many parents suspect environmental causes, such as mercury preservatives in vaccines, for the growing number of autistic children. Research has not yet proved such a link, but skeptical parents suspect a coverup.

"Right now, we don't have anything that would be considered a cure, so it's no surprise that parents are looking for answers," Reiff said.

Autism refers to a broad spectrum of brain disorders in children that typically involve difficulty talking, interacting with others or learning. One in 150 births results in an autistic child, according to federal estimates. Autistic children also have medical problems that are often misunderstood and receive inconsistent treatment. Stomach problems and sleep disorders are common, but autistic children often can't describe them.

"Whatever behavior therapies you're trying to implement, they're not going to work very well if that child is sick," said Dr. Scott Selleck, director of the U's developmental biology center.

He compared the nation's emerging focus on autism to the quest that intensified 30 years ago to gain a basic understanding of cancer.

The vision for the Minnesota center is to embrace all ideas about the treatment of autism and to determine whether they should be used in clinical care. Evidence is lacking, for example, about whether autistic children can be treated effectively with chelation therapy, a powerful but risky medication therapy that removes heavy metals such as mercury from the body. Research also needs to address whether gluten-free diets can treat autism by eliminating the gluten proteins that may have a role in the disorder. Some methods work in helping some children; others do not.

"We are open to all possibilities, but we are going to evaluate them rigorously," Selleck said. "That is the only way, in the end, that we're going to make sense of this. ... We are not going to go down the road of implementing the things we don't study."

The university's interest coincides with increasing concern among Minnesota insurers over the rising costs of autistic children and the lack of evidence on how best to treat them. Blue Cross and Blue Shield of Minnesota plans to collaborate with the university initiative and has created its own advisory group on the issue.

"What's out there just isn't working," said MaryAnn Stump, Blue Cross' chief innovation officer.

State lawmakers this session required the Minnesota Department of Human Services to study how to encourage and reward doctors to provide the best care for autistic children. The state and the university envision a "medical home" that will coordinate the efforts of family doctors and specialists who often are involved in a single child's case.

An attempt to boost public funding by more than $4 million per year for treatment and family support services was not included in the state health budget this session. However, the federal government has tripled its research dollars for autism since 2000 and increased support for education and early intervention services.

Among the university's goals is a registry of autistic children in Minnesota that will be used to research trends in the development and treatment of autism.

Selleck said he hopes the university initiative will help bridge the divide between the medical community and parents of autistic children. Experts in autism tend to broaden the implications of autism research beyond the specific groups of children in their studies. The spectrum of autism disorders is so wide that such generalizations can be faulty and confuse and annoy parents, he said.

"The choice of one's words is extremely critical," he said, "because we don't want to ignore the studies that are out there, nor do we want to discount them. But we do want to recognize what their limitations are."

The university hopes to complete fundraising later this year. Supporters Alfred and Ingrid Lenz Harrison have pledged a $1 million matching grant. The university is prepared to start with a small budget and seed money that researchers on campus could use to start autism-related projects.

But Selleck said the university has a road map toward its larger vision. The MIND Institute at the University of California-Davis started small and grew to a $100 million center within seven years. The university's goal is to become the Midwest's premier autism research institute.

"Our objective is to have the comprehensive approach to this problem, equivalent to what they are doing, within that time frame," Selleck said.

Jeremy Olson can be reached at jolson@pioneerpress.com or 651-228-5583.

BY THE NUMBERS

1 in 150

Children believed born with autism

10,000

Autistic people in Minnesota

11 percent

Increase in boys diagnosed with pervasive developmental disorders, including autism, from 2004 to 2005

9.6 percent

Increase in girls diagnosed

Autism United: NY Special Ed Chief Denies Autism Increase

Autism United Challenges NY State Special Ed Chief's Denial of Autism Increase

Autism United, a new organization of parents and service organizations, today (7/8/07) submitted a letter to the NY State official in charge of special education policy challenging her statement that "diagnostic shift" explains the increase in the number of children with autism. The NY official's statement, quoted in a July 8, 2007 NY Times article reporting about supposed declining rates of children in special education, is the latest troubling statement by a public official denying the reality of the autism epidemic. Denial of an autism epidemic would justify a public policy denying the expenditure of public funds on the education of children with autism....

Read the whole thing.

NAA: No on California AB 16

California legislators need to hear from ALL of us on AB 16 BEFORE July 11!

California’s AB 16, approved last week by the Senate Education Committee, would remove all public input and legislative review on childhood vaccines added to the mandatory immunization schedule, automatically adding every new vaccine approved by the CDC's Advisory Committee on Immunization Practices (ACIP).

• Passage of this bill will set a dangerous precedent for all of us, whether or not we live in California.
• We’ve seen what public input has done to prevent Gardasil from becoming mandated in some states, as even many in the mainstream medical community opposed forcing the HPV shot on young girls.
• Merck, the drug company behind AB 16 and Gardasil, wants to ensure that public opinion, scientific debate, and common sense will never again stand in the way of profit.
• If this bill passes in California, similar legislation will most likely find its way to every other state.

PLEASE ACT NOW!

The California Senate Health Committee meets this Wednesday, July 11.

PLEASE CALL, FAX, OR EMAIL EACH MEMBER OF THE COMMITTEE LISTED BELOW WITH LINKS TO CONTACT INFORMATION, AND TELL THEM TO VOTE NO ON AB 16:

Senator Sheila Kuehl (Chair)
Senator Samuel Aanestad (Vice Chair)
Senator Elaine Alquist
Senator Gilbert Cedillo
Senator Dave Cox
Senator Abel Maldonado
Senator Gloria Negrete McLeod
Senator Mark Ridley-Thomas
Senator Darrell Steinberg
Senator Mark Wyland
Senator Leland Yee

Last week’s testimony from parent Rick Rollens is below. Please read this powerful statement, contact the California Senate Health Committee members now, and pass this message along to family members and friends. We can’t let Merck get away with stealing our civil rights, gaining even more power to foist poorly tested and potentially harmful products on our children.

Mr. Chairman and Members:

My name is Rick Rollens. This is my 33 year of being in and around the Capitol. For 24 years I served in the State Senate in numerous positions including a chief of staff to a Senator, chief consultant to the Senate Rules Committee, creator and director of the Office of Senate Floor Analyses, and finally as Secretary of the Senate. In 1996 I resigned my post ion as Secretary of the Senate in order to dedicate my life to finding effective treatments and a cure for my beloved son Russell who suffers from vaccine induced regressive autism.

Since leaving the Senate, I have been extremely active in the autism world. I am a co-founder of FEAT...Families for Early Autism Treatment, a co-founder of the UC Davis M.I.N.D. Institute, a Speaker's appointee to the Legislative Blue Ribbon Commission on Autism, Superintendent O'Connell's appointee to his Autism Advisory Committee, I have served as a national board member of ASA, the NIH Autism Advisory Committee, and currently serve on numerous autism organizations throughout California, the nation, and the world. My family and I have been featured in dozens of local, state, national and international media stories about autism and the autism epidemic, the crown jewel of them all is this (SHOW NEWSWEEK) cover story in Newsweek magazine that featured my son Russell on the cover and a feature on Russell's story of his decent into autism at 6 months old after receiving numerous shots at his well baby check up and immediately suffering a classic adverse vaccine reaction leading to his acquired full syndrome autism. That day changed his life and the lives of ALL who know and love him. Russell is not alone.

Today, California is adding 10 new children a day, seven days a week, like Russell to our DD system. In 1980 when California first enacted it's mandatory immunization law, autism accounted for 3% of all the intakes into our DD system. Today, autism only the fastest growing condition entering the system but now accounts for 64% of all the new intakes. In 1980 the incidence of autism was 1 in 10,000, today it is 1-150, and in some areas high as 1-84 children. Twenty years ago there were 2700 persons with autism in our system, today there are 34,000. In the past 9 months alone, we added more children with autism to our system then we did over the 16 YEAR period from 1971-1987! 886 new children in the past 3 months alone.

The most telling fact is that over 91%, or 9 out of 10 persons currently in our system were born after 1980, the year that California's mandatory immunization law was enacted. There is a tsunami of young children aged 3 to 17 years old accounting for nearly 80% of the autism population moving through the system.

I am here today to vehemently oppose AB 16. AB 16 represents an outrageous and arrogant attempt by the makers of the HPV vaccine and Vioxx, as well as those who front for them in the public health community, to strip away from the Legislature and the Governor the responsibility that has been in statute for nearly 30 years to review and approve or reject the addition of new vaccines to the mandatory childhood immunization schedule; and instead, turn over that responsibility to one and a group of their own, a non-accountable bureaucrat, the state Director of Public Health and a Committee 3,000 miles away of vaccine promoters who have yet to reject an application for adding a new vaccine to the schedule, and numerous members of which are personally and professionally conflicted for accepting research and professional funding and career opportunities from the same vaccine manufactures that are suppose to be regulating. Their behavior and actions have become subject to Congressional investigation and review.

AB 16 as introduced would have added Merck's HPV vaccine to the mandatory schedule. After extensive public hearing and debate in the Assembly Health Committee, it was clear that there was little support to approve the bill and the author refused to even let the bill come up for a vote. This was the second new vaccine that has been rejected by the Legislature in the past five years. I guess enough was enough in the minds of the vaccine manufacturers and their followers. The bill was subsequently gutted and amended the bill to include the provisions before you today.

Keep in mind, that today in California children receive up to 30 doses of vaccines by the age of 6 years old, most of which are administered starting moments after birth through the first two years of life when healthy brain development is most important. If the provisions of AB 16 had been in effect during this current decade, the number of doses of vaccines our children would have been subjected to would have increased to 40 doses. Throughout the country, including right here at the M.I.N.D. Institute, dozens of research projects are currently underway examining the connection between the immune system, vaccines, and autism.

And lastly, be aware that there are over 300 new vaccines currently in development and in the pipeline, including vaccines for such things as nicotine addiction, diarrhea, mononucleosis, cocaine, methamphetamine, and stomach ulcers. These vaccines, as well as vaccines currently in use today contain such potent toxic and poisonous agents as mercury, aluminum, formaldehyde, aborted fetal tissue, MSG, live viruses, and killed bacteria.

Mr. Chairman and Members, the system we have in place today has served us well for nearly three decades. You and your constituents and future members of the legislature and their constituents have a real say in the very serious issue of what new vaccines are added to MANDATORY childhood immunization schedule. There is sunshine in the current process, this bill takes away the sunshine away and replaces it with a wink and a nod by unaccountable bureaucrats and members of a Committee that have not seen a vaccine they can say no to.

On behalf of the children and their families of today, and the children yet to be born, please reject this horrific proposal. Keep this process in the hands of the people's representatives, do not hand over the future of our children's very health to those who would profit both personally and professionally by approving this bill. Please vote no. Thank you.

Telegraph: ASD in the UK now 1 in 58

New fears over MMR link to autism
Telegraph
By Stephen Adams
Last Updated: 3:11pm BST 08/07/2007

Fresh fears over a possible link between the measles, mumps and rubella (MMR) vaccine and autism have been raised after a new study found that almost double the number of children could have the condition than previously thought.

Researchers at Cambridge University’s Autism Research Centre (ARC) have estimated that one in 58 children suffer from some form of the disorder, compared to previous estimates of about one in 100.

The figures mean up to 210,000 children under 16 across the UK could have some form of autism, the unpublished research by the ARC found.
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Two of the seven experts who took part in the study have now privately voiced concerns that the controversial MMR vaccine may be a factor in the emergence of autism among some children.

Dr Fiona Scott and Dr Carol Stott have reportedly said they think the jab, given to children between 12 and 15 months, could be responsible for growing numbers of children apparently exhibiting symptoms of the disorder. However, the other five, including team leader Professor Simon Baron-Cohen, rejected their view.

Autism is the term given to a wide range of development disorders that affects an individual’s ability to understand the world and communicate with others. It covers a "spectrum" ranging from severe cases of "classic" autism - which often renders a child unable to speak - to much milder Asperger’s syndrome, which can affect a person’s ability to socialise.

Until the early 1990s experts believed that only four or five people in 10,000 suffered from the condition. Since then studies have shown autism is much more common, with experts generally agreeing on the one in 100 figure.

Academics agree much of the apparent increase can be explained by the fact that more people are now aware of what autism is. But there is still a heated debate about whether or not autism is actually becoming more common in children.

Last year a study reported in the medical journal The Lancet put forward an estimate that one in 86 children suffered from some form of autism. The ARC’s paper, based on a study of 12,000 primary school children in Cambridgeshire between 2001 and 2004, raises the estimate significantly.

The results of the study, which was purely statistical and did not examine the possible medical causes of autism, so worried Professor Baron-Cohen that he contacted health officials in Cambridgeshire.

However, the professor - who is a first cousin of the comedian Sasha Baron-Cohen - stressed he did not believe the MMR vaccine was behind the apparent increase.

Professor Baron-Cohen said: "As for MMR, at this point one can conclude that evidence does not support the idea that the MMR causes autism."

He said he believed a better understanding of autism and environmental factors such as exposure to chemicals and hormones were more likely to be behind the recorded increase. Nonetheless, the research is bound to spark renewed doubts among concerned parents about the safety of the triple vaccine.

The percentage of children being given the jab fell dramatically after doubts were raised over its safety by Dr Andrew Wakefield, a gastroenterologist at the Royal Free Hospital in London. Vaccination rates have only just started to recover.

In 1998 Dr Wakefield co-authored a paper published in The Lancet which looked at bowel disease in 12 children with autism, and suggested a possible link with the MMR vaccine. Later he gave a press conference calling the safety of the vaccine into question and recommending children should be given the three inoculations separately.

Ten of the 13 academics who contributed towards the paper soon retracted its conclusions, but Dr Wakefield and two others have stuck by the 'interpretation’. Dr Wakefield is due before a General Medical Council hearing next week to answer a number of charges in relation to the 1998 study.

The new report has also triggered calls for the Government to do more to further the understanding of autism and help those with it.

Benet Middleton (OK), director of communications at the National Autistic Society, said: "There is an urgent need for a clear Government strategy for responding to autism.

"We need to have an accurate picture of how many people have autism, we need adequate services in place to support people with autism and we need those working with people with autism to have the right training.

"Current provision for those with the disability is deeply inadequate given the scale of the need. Autism is a lifelong disability and when an individual’s needs are not met the long term consequences both financially and for the individual’s well being are profound."

Ivan Corea, head of the Autism Awareness Campaign UK, said many autistic people were at the mercy of a "postcode lottery".

She said: "We are urging Gordon Brown to provide a world class education for all children with autism and Asperger’s Syndrome, to provide new specialist autism schools, even Special Needs Academies and autism units equipped with sensory rooms in mainstream primary and secondary schools."

A spokesman for the Health Protection Agency (HPA) today stressed the MMR vaccine was safe.

She said: "We have not seen this report, which has not been published yet and has not been peer reviewed, so we cannot comment on it. Every test that has tried to find a link between MMR and autism has not found one. MMR is a safe vaccine."

UK Observer: Wakefield Interviewed

I told the truth all along, says doctor at heart of autism row

In his only interview before he appears in front of the General Medical Council to face serious charges of malpractice, the campaigner against the MMR vaccine tells Denis Campbell that he has no regrets

Sunday July 8, 2007

The Observer

Flicking through some paperwork in an Italian restaurant in central London, Andrew Wakefield cuts an anonymous figure. Tall, wearing a deep green polo shirt, chinos and outdoor jacket against the rain, he could be an accountant checking figures. It is unlikely that the other mid-afternoon diners recognize a man who sparked one of the great public health controversies.

Wakefield is a hugely divisive figure. Nine years ago he claimed that the measles mumps rubella vaccine, or MMR, given to every baby in the country at 12-15 months, may cause autism. To many in the medical and political establishment he is a misguided, dangerous propagandist whose claims have caused unnecessary alarm among millions of parents and risked outbreaks of three diseases that remain potential killers. Some critics describe him as a crank, a publicity-lover, a peddler of spin, hype and pseudo-science. He has been attacked by the Chief Medical Officer, the then Health Secretary and Tony Blair.

Forced to leave Britain to practice in America because of the furor, Wakefield is now back. And unrepentant. Time, and the condemnation he faced, have deepened his suspicions about MMR. For the last few weeks he has spent long hours every day with his lawyers finalizing evidence he will give when he appears next week before the General Medical Council, the body which investigates alleged malpractice by doctors. He is facing a long list of serious charges relating to research he co-authored in 1998 that triggered the huge public uncertainty about MMR that endures today.

To supporters, Wakefield is a hero, a lone crusader for truth and a principled, caring doctor challenging a policy that is harming significant numbers of children. Some scientists, a handful of doctors and parents of sons and daughters they claim have been damaged by the triple vaccine see him as the victim of a Department of Health-led plot to discredit him, and the GMC hearing as a show trial designed to suppress an uncomfortable truth. Wakefield, talking to The Observer in his only interview before the hearing, says he plans to defend himself vigorously against allegations he sees as ill-conceived and malicious. 'I've done what I've done because my motivation is the suffering of children I've seen and the determination of devoted, articulate, rational parents to find out why part of them has been destroyed, why their child has been ruined. Why would I go through this process of professional isolation if it was simply to do with egomania? My alleged egomania doesn't explain things very well. There's been no upside for me in having pursued this issue. It's been very difficult.

'As Vaclav Havel once said: "Follow the man who seeks the truth; run from the man who has found it." I can't tell you that we know that the MMR vaccine causes autism. But the Department of Health can tell you with 100 per cent certainty that it doesn't, and they believe that, and that concerns me greatly.'

The MMR controversy began on 26 February, 1998 when a group of doctors at the Royal Free Hospital in north London, including Wakefield, held a press conference to publicise a research paper they had just published in the medical journal The Lancet.

Journalists asked about the authors' main claim to have discovered, in a study of 12 children, a new form of inflammatory bowel disease, which they linked to the MMR vaccine. The doctors outlined their theory that in some children the combination vaccine damaged the immune system because they could not cope with simultaneously receiving a tiny dose of three separate diseases, leaving them susceptible to illness.

The five doctors were asked if, given the findings, parents should continue having their children vaccinated with the three-in-one jab. Roy Pounder, professor of medicine at the Royal Free, passed the question to Wakefield. The gastro-enterologist replied that the potential link between gut disorders, autism and MMR vaccination could no longer be ignored. 'It's a moral issue, and I can't support the continued use of these three vaccines given in combination until this issue has been resolved,' he said.

Several co-authors disagreed, as did the Department of Health, which was furious. But, fuelled by huge publicity, Wakefield's remarks led to large numbers of parents then, since and today enduring anxious hours wondering what to do: follow the NHS advice and get their babies the MMR jab or opt for single vaccines - argued by some to be safer - privately instead.

MMR safety will be back in the news on 16 July when the GMC Fitness to Practice Panel begins disciplinary proceedings against Wakefield and two of his Lancet co-authors, Professor John Walker-Smith and Professor Simon Murch. The charges of serious professional misconduct in the way they conducted the disputed study are very grave. If upheld, all face being struck off.

They include allegations that the three undertook research with the 12 children without proper approval from the Royal Free's ethics committee, failed to conduct their study along the lines they had sought ethical approval for, and did not treat their young patients in accordance with the ethical approval given. The trio are accused of carrying out procedures on children in the study, such as lumbar punctures and colonoscopies, that were not in the best interests of the health of some seriously ill young people.

According to the charge papers, the GMC will also hear claims that Wakefield and Walker-Smith 'acted dishonestly and irresponsibly' in failing to tell The Lancet how they had recruited the patients, and that the pair also acted irresponsibly when they gave one child 'a purportedly therapeutic substance for experimental reasons prior to obtaining information about the safety of the substance'.

Wakefield himself is further accused of being 'dishonest and misleading' when he obtained research funds from the Legal Aid Board, of ordering investigations to be carried out on some children even though he did not have the pediatric qualifications to do so, and that he took blood from children at a birthday party to use for research purposes after offering them money.

Wakefield explains that legal advice and his desire not to turn the GMC panel against him, mean he is unable to respond directly to the allegations. But friends say that he views the GMC hearing as part of a long-running 'Stalinist' campaign to ruin his reputation. He and his co-accused deny all the claims.

Wakefield told The Observer that he has no regrets for saying what he did in 1998 nor for continuing to seek to prove his view of MMR as the likeliest explanation for the rise in cases of autism in Britain. Almost every child health expert, though, regards the jab as hugely beneficial to public health and rules out any connection between it and autism.

'My concern is that it's biologically plausible that the MMR vaccine causes or contributes to the disease in many children, and that nothing in the science so far dissuades me from the continued need to pursue that question', Wakefield said. 'The trend in autism has gone up sharply in many countries. It's interesting that that increase coincides in many places with the introduction of the MMR vaccine. That doesn't make it the cause. But it's an observation that needs to be explained, because there was clearly some environmental change at that time that led to growing numbers of children becoming autistic. It's a legitimate question if MMR is one of those factors. I fear that it may be.'

His notoriety means he is effectively an exile in America, where he is now the executive director of research at Thoughtful House, a non-profit-making school and clinic in Austin, Texas, which treats children with autism from all over the world.

'The hypothesis that we have been pursuing for some years is that the vaccines in some way may interact to increase the risk of the measles element in the MMR jab damaging the intestine, and possibly the brain directly, or alternatively that the intestinal disease leads to secondary immune injury to the developing brain.'

As the Havel quote suggests, Wakefield sees himself as a dogged seeker after a disturbing truth. He compares himself to the small band of doctors who, soon after Aids emerged in the Eighties, pinpointed a previously unknown virus (HIV) as the cause, only for their theory to take years to become established.

'In the Thatcher-Reagan era, Aids was originally seen as something politically unacceptable, as an act of God or a gay plague - as anything but our problem. People were stigmatized,' he said. 'We are looking at something with autism which is similarly politically unacceptable. That is, how could one of medicine's modern miracles possibly be associated with damage to children? Because if it's shown to be linked, then it becomes less of a miracle and more of a potential scandal.' He believes that the Department of Health introduced MMR into the UK in 1988 to save money and that he has been persecuted for daring to take on powerful political and drug industry interests.

Professor David Elliman, of Great Ormond Street Children's Hospital in London, is one of Wakefield's chief critics. In his view a growing public distrust of health professionals, caused by a series of medical scandals, has helped create a climate in which Wakefield is seen by some as a David taking on the Goliath of a medical establishment.

'Some people are susceptible to conspiracy theories,' he said. 'Media coverage of the MMR row, which gave both sides equal say, gave the public the misleading impression that Wakefield represented a significant body of opinion. Yet there isn't a 50-50 split on this. It's 99.9 per cent to point one [of a per cent].'

The science author and broadcaster Vivienne Parry, a member of the government's independent advisory panel, the Joint Committee on Vaccination and Immunization, speaks for the large majority of scientific and medical opinion when she says: 'I think Wakefield is wrong about MMR. He has caused great alarm and distress. But the demonization of him has made some people think he's being hounded by a vengeful establishment, which has given him a certain amount of credibility with those who believe that all mavericks are right.'

Autism baffles science. Unlike diseases - and autism is a neurological condition, not a disease - few experts would claim to know exactly what causes it, much less treat it. Some blame genetic factors, others put the increase in those classed as being autistic down to better diagnosis, and others believe MMR is responsible.

Professor Simon Baron-Cohen, co-director of the Autism Research Centre at Cambridge University, is the UK's leading expert on the lifelong, so far incurable, condition, which is estimated to affect 588,000 people, about one in 100 Britons. But even he is not precise: 'The main causes of autism are likely to be genetic, though interacting with some as yet unknown environmental factors.'

The National Autistic Society is similarly vague. 'The causes of autism are still being investigated. Many experts believe that the pattern of behavior from which autism is diagnosed may not result from a single cause,' it has said in a statement. Sufferers have trouble forming relationships, encounter difficulties in communicating in verbal or written form, and often develop obsessional interests.

Interestingly, the charity does not adhere to the medical consensus which categorically rejects any link between MMR and autism. 'The NAS is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine,' says a spokeswoman.

Experts disagree on whether reported increases in the number of children with autism in the UK and elsewhere represent 'real' rises or better diagnosis. Wakefield is now a key figure in a growing world network of organizations, medical professionals, treatment centers, activist groups and campaigning parents which insists the rise is real and that the triple jab is the reason.

Pressure is building for fresh studies of possible links and in-depth examination of children apparently adversely affected by vaccines. The US Court of Federal Claims recently began hearing a case which could lead to compensation being paid to 4,800 families who have filed lawsuits claiming that their children ended up suffering from autism, inflammatory bowel disease, glaucoma and epilepsy after receiving the MMR jab and other childhood vaccinations.

Critics point out that the US court case is not about the MMR vaccine itself but centers on the use of a preservative called thimerosal, which contains 50 per cent mercury and until a few years ago was added to routine vaccinations given to children in the US under one. Crucially, it has never been an element of the MMR vaccine here.

In Japan the MMR jab became mandatory in 1989, but was withdrawn in 1993 after doctors warned of side-effects. There were more than 2,000 claims that it triggered reactions such as meningitis and encephalitis, an inflammation of the brain, and even caused deaths. Families of children who had died received £80,000 each in damages.

'America is like the UK in that many children are affected by autism, but over there there's a powerful drive to get to the truth, an inherent mistrust of the healthcare bureaucracy, and a can-do attitude among intelligent and articulate parents,' says Wakefield. He predicts that 'the truth' about MMR will eventually come from America, not the UK.

Before Wakefield's warning, 91.5 per cent of children in England had the MMR jab by the time they turned two. After he hit the headlines immunization rates fell to 87.4 per cent. Public distrust in the vaccine was enhanced when Tony Blair refused to say whether his son Leo had had the jab and rumors swirled that the Blairs had traveled to France to have the single jabs privately. The vaccination rate subsequently fell to 79.9 per cent. The World Health Organization says 95 per cent is necessary to ensure what medical experts call 'herd immunity' - that enough children have had MMR to ensure that they neither get the three illnesses nor pass them on to others.

Dr Natasha Crowcroft, a childhood immunization expert at the Health Protection Agency, said: 'There have been outbreaks of measles in places like nurseries. The fear is that children who weren't vaccinated following Wakefield's comments are now approaching secondary school age and may well get measles, for example on holiday in Thailand or even in Italy, where it's common.'

MMR's defenders admit that significant numbers of parents are still apprehensive. 'Confidence was shaken,' concedes Crowcroft. But parental fear seems to be gradually subsiding. MMR uptake has been increasing since 2003; by last year 84.1 per cent of two year olds in England had had it. Gordon Brown last year said that his son, John, two had the triple jab and made clear he saw it as a matter of parents' responsibility to ensure their child was covered.

Although Wakefield will be on trial at the GMC, the hearing could prove uncomfortable for those that make decisions about health. An editorial in the New Scientist magazine has expressed alarm over the implications of the GMC's action for health professionals' freedom to raise questions about possible safety flaws. 'The notion that he should have kept quiet is ludicrous: there are too many cases where doctors' concerns have proved correct, such as their fears over the impact of antidepressant drugs on children.'

MMR's defenders do not pretend it is always 100 per cent safe. JCVI member Vivienne Parry admits: 'There's a risk with all vaccines. It's a very small risk. No one has ever said that the MMR vaccine, or any vaccine, is completely without side-effects. But as a society we have to decide whether the benefits outweigh the risks. If we had measles, it would kill lots of children. If you have a vaccine, it will damage some children, but a very small number.' Parry believes the near-disappearance of measles, mumps and rubella in recent times means they no longer hold any horror for most people, and that helps explain the questioning attitude to MMR.

In the Italian restaurant, Wakefield fires a parting shot before another meeting with his lawyers. 'I'm determined to continue to do this work, regardless of the personal cost. It has to be done. Because the parents of these children deserve an answer, and their children deserve help and they can be helped', he says. 'My colleagues and I won't be deflected by the interests of public health policymakers and pharmaceuticals. I want to help children with autism; they are my motivation. If the work ultimately exonerates the vaccines, that's fine. If not, we need to think again.'

Rolling For Autism: A Brother's Love

We are having a nice vacation week, but this brought me to tears so I thought I would share it with you.


Dan and Ben

Dan is Ben's little brother. Ben is autistic. Dan is skating up the East Coast with his college friends to raise awareness for autism and raise scholarship money for those with autism.

Dan Tatar, whose father, Neil, helped set up the group ’s Web site and also established a 5013c nonprofit organization, ADK Charities, to handle donations, said his goal is to inspire other young adults to learn about autism.

There are now 750 members of Rolling for Autism, among students from 150 colleges.

“Through colleges and schools, we want to reach the teachers, lawyers, doctors of tomorrow, so they can be better informed about autism, ” Tatar said. “We want to fund grants for things like summer camps, to help build the autistic person’s self-confidence. ”

Read all about their efforts at http://www.rollingforautism.com. Today they are in Jacksonboro, South Carolina.

There are so many difficulties for the siblings of autistics, but so many blessings. I believe that the greatest is that you become aware and compassionate. I hope that we can do as well by our sons as the Tartar's have.

Team Taylor will be in Kittery on August 19th to welcome Dan and his friends to Maine and offer our thanks. In the mean time we will keep you posted on their journey.

Rolling along for autism
Brother to skate up East Coast to raise awareness for disease
By PAMELA A. BROOKS
Special to The Post-Star
Published: Thursday, July 05, 2007

At first glance, it might seem that the younger brother in this story is the hero.

After all, it’s Dan Tatar, 23, who’s inline skating up the East coast with three college buddies in an inspiring quest to raise money and awareness for autism.

But Dan has a big brother named Ben, now 25, who’s faced hurdles all his life, struggling with challenges consistent with autism spectrum disorder.

Dan Tatar said his admiration for his big brother is the real reason he’ll pull on his skates for the next 50-plus days straight and skate until he’s ready to drop.

Tatar is being joined for the journey by Carson Strang of Cleveland, Ohio, Sean Streich, of Kimberly, British Columbia, and Jason Ortolano of Carteret, N.J.

Underway at last

The trip began a week ago as an energetic team of four Union College grads pushed out of Florida and headed north, rolling stride after stride towards distant Kittery, Maine. It ’s expected to end on Aug. 19, some 2,000 miles later.

By Wednesday, Tatar and friends were in Savannah, Ga., where he reported the temperature - and the skating - was hot, hot, hot.

“I’ve done 20 miles so far, ” he said in an early evening phone interview. “Five more to go, and then we ’ll get some dinner. Three of us skate, one drives the car ahead seven or eight miles, then we switch. Tomorrow we ’ll start at 6 a.m. to avoid the heat.”

Media stars

All along the way, the core group of four is being joined by various other skaters who learned about the project on the group ’s Web site, www.rollingforautism.com. Plans for the arduous journey got started a year ago, and it has now grown into a media event wherever they go.

“We’ve been on the ‘Good Morning, Jacksonville’ show, and three other different morning shows,” Tatar said. “There was just a huge gala at a PGA golf course, where they honored Jenny McCarthy for her work for autism, plus a cutting-edge doctor - and us. It was amazing.”

Plans are in the works, Tatar added, for a visit to the “Good Morning America” show when the group reaches New York City.

“There are events in every city, at schools and summer camps, ” said Tatar. “We were at a cafe last night, meeting with families from the area, and the events will be getting bigger as we get farther north.”

What they want

Tatar, whose father, Neil, helped set up the group’s Web site and also established a 5013c nonprofit organization, ADK Charities, to handle donations, said his goal is to inspire other young adults to learn about autism.

There are now 750 members of Rolling for Autism, among students from 150 colleges.

“Through colleges and schools, we want to reach the teachers, lawyers, doctors of tomorrow, so they can be better informed about autism,” Tatar said. “We want to fund grants for things like summer camps, to help build the autistic person’s self-confidence. ”

Big brother Ben

Here at home, Ben Tatar and his father, Neil, are watching the journey on the group’s Web site and getting frequent updates by phone.

Ben was able to finish high school and graduate from Adirondack Community College, although it was a daily struggle. His passions are weightlifting and journalism, and he’s already had sports-related articles published on Web sites and in magazines.

“Weightlifting over 400 pounds, when I don’t even weigh 200 pounds, is good for me” said Ben. “I’m extra-intense by nature. I couldn’t sit still in the classroom until I learned how to use visualization, breathing and mind techniques to focus on one specific task.” When asked what he thought about his brother ’s trek on inline skates, Ben ’s response made the circle complete.

“There are a lot of autistic kids around the world with parents who don’t know how much they can accomplish with the right help,” said Ben. “What my little brother is doing is very, very inspirational.”

For more information, to follow the journey, or to make a donation, visit the Web site, www.rollingforautism.com.

Autism: An Epidemic, Worse Than Polio Was in the 1950s

The University of New Mexico Center for Development & Disability and the city of Albuquerque are partnering to host the state's first town hall meeting on autism.

Mayor Martin Chavez will host the meeting at the Albuquerque Convention Center from 8 a.m.-1 p.m. Saturday, Aug. 11. The forum is open to the public.

The partnership behind this grassroots initiative is the first ever between the city and UNM, said Maryellen Missik-Tow, a development specialist at the CDD.

The mayor is inviting all leaders from New Mexico to this forum, including local, state and federal representatives, industry leaders, community advocates, educational institutions and parents.

Missik-Tow, who calls autism "an epidemic, worse than polio was in the 1950s," said she is particularly eager to have business leaders attend so they can learn about the impact of autistic children on employees, who might pay $25,000 to $30,000 out-of-pocket per year to provide treatment for their children. She also hopes to recruit corporate investment in a planned state-of-the-art Autism Center for Excellence.

"People are leaving our state because we have no services [for autistic children]," Missik-Tow said.

Requesting Answers and Actions from Autism Speaks

June 28, 2007

From: Ginger Taylor, M.S. of AdventuresInAutism.com

To: The Greater Autism Community

For just over a month I, and many others, have been writing about our concerns over the way Autism Speaks has been using its considerable resources. During its two year existence, funds have been directed toward projects that yield little improvement in the quality of life for those with autism and AS has reportedly shown an unwillingness to cooperate with, or even acknowledge the contributions of, all but a few large autism groups. This action is in direct conflict with the public image held out by AS that they listen to all those in the autism community and that they wish to speak for the autism community.

Because Autism Speaks is raising tens of millions of dollars a year from the public based on their claim that they are serving people with autism, they must be held to account if these funds are not indeed being spent on projects that serve autistics.

Thus far, the only response from anyone at Autism Speaks has come from Jon Shestack, founder of Cure Autism Now and board member of Autism Speaks. Mr. Shestak has posted a public letter stating his earnest intentions, asking for restraint and patience in criticizing AS to give them a chance to respond on the merits, and calling on the board of AS to do some self examination to see if it is time for a change in direction. I believed that his public stance was both reasonable and admirable, and I committed to waiting to hear from AS.

After a week, during which Mr. Shestak stated his intention to respond to my open letter to him, the silence has continued. It is rumored that AS has no plans to comment on the issues that have been raised because they believe that ultimately the controversy will not cut into their bottom line. I do not know if this is accurate information, but it may explain the deafening silence from AS.

In light of this, I am proposing that those in the greater autism community, those who have not been invited into the “Big Tent” that Autism Speaks has stated that it wants to be, express their concerns and frustrations directly to Autism Speaks in one concerted effort. For the next two weeks I will be collecting letters from those in the autism community, both from individuals and organizations, who wish to directly question AS on their direction, methods and actions, and who wish to make specific requests of them. I will be delivering these letters to Autism Speaks under one cover letter.

If you would like your letter to be included, here are the requirements:

• Your letter to Autism Speaks be in good faith.  This is not an opportunity to vent the frustration that many of us have, but to open a constructive dialogue and attempt to get real answers and action. 


• Your letter to AS be specific.  List specific complaints and specific actions that you want taken.  In my letter to Mr. Shestack I asked, “… if we compile a list of hard questions that we want answers to, a list of “awareness” messages that we want circulated, a list of service projects we want undertaken, a list of legislation that we want lobbied and a list of research that we want funded, will the AS board give us open, concrete answers and actions, or legitimate justifications where they will not?”  Your letter should be such so that AS can have the chance to make specific answers and take specific action.


• Your letter to AS remain private for the time being.  Autism Speaks should have the opportunity to respond privately, either to you specifically or to the group as a whole, before the letters are made public.  You may not post your letter publicly until AS has had a reasonable amount of time to respond to it privately.  I will announce an agreed upon date.


• Your letter must be signed and include your contact information.


• Your letter must be submitted to me at ASLetters@AdventuresInAutism.com by July 13th, 2007

This debate as to how to best serve those with autism is becoming increasingly contentious. While that is regrettable, it is also reasonable because ultimately, the quality of the lives of millions of people world wide is at stake. It is my belief that the only thing that will change the tone of this debate is very frank, very transparent conversation followed by very concrete action. The days of paying lip service to the treatment and care of those with autism, and those yet to be born who may potentially be autistic, are long gone.

It is time for those who hold the most power in the autism world to allow themselves to be held accountable to those whom they claim to serve.

Ultimately the only value in this exchange will be if it leads to improvements in the quality of life for those with autism, their families and their care givers. It is my earnest hope that this will refocus our efforts onto serving them directly.

Sincerely,
Ginger Taylor, M.S.
AdventureInAutism.com

Saturday: Katie Wright on Air America

"Katie Wright, the mother of an autistic son who links his condition to thimerosol, the mercury preservative in childhood vaccinations", will be interviewed on the Ring of Fire radio show on Air America on Saturday.

Autism Speaks Aint Speakin'

For the last month or so other bloggers and I have been pointing out the serious ethical problems of Autism Speaks. Last week, one of the board members, Jon Shestack, wrote a personal note to those like me who have been critical of Autism Speaks, asking for us to use restraint in our criticism and to give AS the time to answer our charges on the merits. He also called on the board of Autism Speaks to do some soul searching to see if it was time for them to change direction.

Well more than a week has gone by since then, Jon Shestack has been arguing with some in the ND crowd, but no one at AS seems to be offering the "defense on the merits" that we are supposed to be waiting for.

So exactly how long are we supposed to wait patiently?

CDC: Out of Excuses on the Autism Study that "Should be Done"

CDC: Out of Excuses on the Autism Study that "Should be Done"
Posted June 27, 2007 | 11:01 PM (EST)
HuffPo

A simple study of autism rates among vaccinated and unvaccinated children "could be done and should be done" to help settle the raging debate that has now spilled into the US Federal Courts.

The words of some anti-vaccine zealot? An overwrought parent lashing out at something, anything, to blame? Or perhaps a greedy trial lawyer pining for the big bucks of injured-kiddie tort.

No, these were the measured, thoughtful remarks of CDC Director Dr. Julie Gerberding, at a Washington press conference two years ago.

But Gerberding never ordered the study -- one that could silence this tiresome argument once and for all; a study that any rational person would concur "should be done."

Why not? One reason, the powerful director said, is that "very high levels of vaccination... record immunization levels," make it "very, very difficult to get an effective numerator and denominator to get a reliable diagnosis."

But maybe it's not that difficult to find an "effective numerator" (i.e., unvaccinated children) after all.

It certainly wasn't hard for the respected polling company, Survey USA, to find nearly 1,000 unvaccinated children living in nine counties in California and Oregon. All they had to do was pick up the phone.

Survey USA, commissioned by the anti-thimerosal group Generation Rescue, completed telephone interviews in 11,817 households with one or more children age 4 to 17. Of the 17,674 children inventoried, 991 were described as being completely unvaccinated.

Interestingly, the survey found that, among boys (who have neurodevelopmental disorders at a 4-to-1 ratio over girls) vaccinated children were 155% more likely to have a neurological disorder, 224% more likely to have ADHD, and 61% more likely to have autism. Among boys aged 11-18, the increased autism risk was 112%.

This survey suggests there might be a trend here worthy of further investigation. But is it hard science? Of course not, and that is precisely my point.

We need the CDC, or some other well-funded agency, to conduct a comprehensive health study of vaccinated and unvaccinated children, now, using the soundest epidemiological tools available.

And for those who think that phone surveys are a patently ridiculous way to study autism, consider this: The Survey USA methodology was based on the model that the CDC itself has employed in national prevalence studies for ADHD and autism. In fact, Dr. Laura Schieve, co-author of the CDC's two national autism phone surveys said that parent reports demonstrate "high reliability, or reproducibility."

Which brings us back to that numerator. There are clearly enough unvaccinated kids (outside Chicago there is an entire HMO-full) to finally do the study that Dr. Gerberding herself says "could and should be done."

Maybe the Survey USA poll is way off base. Maybe an actual scientific investigation, one that controls for bias and other potentially confounding factors, would show the exact opposite. Maybe, as one would hope and intuitively expect, vaccinated children are truly healthier and happier than unvaccinated children.

I hope that the CDC can prove that they are. Wouldn't that be a wonderful thing? And like I have said before, it would certainly shut up the likes of me.

Now that Dr. Gerberding no longer has the excuse that "record immunization levels" preclude such a study, perhaps she might direct some of the recently appropriated Combating Autism Act funds to studying the two groups of children.

For those that disagree -- and I look forward to your rational comments on why this study should never be done -- I suggest you take up your concerns with the CDC director herself, and not with me.

After all, Dr. Gerberding is the one who said that this study "should be done." And I, for one, could not agree with her more.

PS: This week, Rep. Carolyn Maloney (D-NY) introduced the "Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007" (H.R. 2832). For more information on this legislation, please visit: http://maloney.house.gov

Kathy Fowler Medical Reporter for ABC7 in DC Offers Us A Good Story

In the past Ms. Fowler has produced some really balanced reports and here she does not dismiss parents concerns like most main stream media do.

Thank you Kathy.

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Offit's RotaTeq Safety Labeling Updated to Include Cases of Kawasaki Disease

Paul Offit, who believes that it is safe to inject babies with more than "100,000" vaccines at once (I emailed him to make sure he was not being misquoted, and he replied, "The figure of 100,000 is correct, and probably a little conservative."), has his vaccine labeling changed to note that it may cause Kawasaki Disease.

RotaTeq Safety Labeling Updated to Include Cases of Kawasaki Disease
http://www.medscape.com/viewarticle/558530?src=mp
Yael Waknine
Medscape Medical News 2007. © 2007 Medscape


June 19, 2007 — Changes have been made to the adverse reactions and postmarketing sections of the safety labeling for a live, oral, pentavalent rotavirus vaccine (RotaTeq, Merck and Company, Inc); it now includes cases of Kawasaki disease, the US Food and Drug Administration (FDA) told healthcare professionals on Friday.

The poorly understood disease is uncommon in children, is characterized by high fever and blood vessel inflammation, and affects the lymph nodes, skin, mouth, and heart.

During a phase 3 clinical trial, 5 cases of Kawasaki disease were reported among 36,150 infants who received the vaccine, compared with only 1 case among 35,536 who were given placebo, according to an alert sent from MedWatch, the FDA's safety information and adverse event reporting program.

Three other cases have been reported through the Vaccine Adverse Event Reporting System (VAERS) since the vaccine was approved on February 3, 2006. There is no known cause-and-effect relationship between the use of this or any other vaccine and Kawasaki disease, the FDA said, noting that the cases reported to date are not more frequent than what would be expected to occur by coincidence.

Rotavirus vaccine is indicated for the prevention of rotavirus gastroenteritis in infants and children, which is caused by the serotypes G1, G2, G3, and G4, when administered orally as a 3-dose series to infants between the ages of 6 and 32 weeks.

Healthcare professionals are encouraged to report cases of Kawasaki disease and other adverse events potentially associated with the vaccine to VAERS by going online at www.vaers.hhs.gov or calling 1-800-822-7967 for a report form.

Additional information about the use of the vaccine can be obtained by contacting the FDA’s Center for Biologics Evaluation and Research at 1-800-835-4709 or by e-mail at octma@cber.fda.gov.

She's Mad As Hell and Not Taking It Any More

Kendra is a mom who apparently got sick and tired of the biased and illogical media coverage and shot back.

Her points were so good that I am posting the original article and her response.

I encourage the Valley Independent to be brave enough to publish it.

I encourage the Media to come to grips with the fact that people don't believe the medical community and the government claims that vaccines have no relationship to Autism, and by choosing to report those claims unchallenged, the public trust in them will ebb right along with their trust of PHARMA sponsored medicine.

[UPDATE: Kendra heard back from the author who is the father of a 16 year old with autism, and has softened a great deal toward him. She may update her remarks here.

This was part of a series. The latest installment, published today, indeed adds balance to the previous column. I had written to the columnist myself yesterday, and his response was, 'wait and see'.

To me, the most interesting part of his column today was this:

My wife was invited to attend a special luncheon held by National Association for Autism Research in Pittsburgh to kick off Walk Far for NAAR. About nine other parents of autistic children sat around the same table and naturally they began to discuss their children's condition. One by one, they expressed the same belief that the MMR shot caused their children to become autistic.

Even supporters of NAAR, who are the most anti autism/vaccine link group in existance, firmly believe that vaccines "caused" their own children's autism.

Stunning.

I saw an online poll a few weeks ago that 89% responded that they believed there was a link between vaccines and autism. So if everyone apparently believes this, even NAAR's own charity event goers, even the authors of articles that are criticized by parents who are actually turn out to be on the same "side" as they are, then what are we arguing about? Why are the authorities allowed to ignore the link?

When is someone going to stand up in public and say that the Emperor has no clothes???

I feel like I am living in the twilight zone.]

Report Addresses Autism Levels
By Chris Buckley
VALLEY INDEPENDENT
Tuesday, June 26, 2007

(Editor's note: This is the second part of a four-day series of informational stories about autism and profiles of people who are afflicted with the condition.)

The results of the study sent shockwaves through the medical community.

The Centers for Disease Control announced earlier this year that it had determined one in every 150 children was afflicted with autism or an autistic spectrum disorder.

But Dr. Nancy Minshew was not surprised by the results.

The findings did not indicate an increase in the number of people with autism, but an increased awareness that autistic children are living in our society, Minshew said.

"No, it's not an epidemic, it's an issue of how well a job we're doing diagnosing these kids," said Minshew, professor of psychiatry and neurology at the University of Pittsburgh.

"In Pittsburgh, we're doing a pretty good job. But get an hour out of Pittsburgh and we're doing a poor job."

Minshew has spent 22 years studying autism and is director of the National Institutes of Health Collaborative Program's Excellence in Autism at the University of Pittsburgh. She said university-based diagnoses are most effective in identifying autism.

Minshew said recent surveys found similar results to the CDC report. The community of Brick Township, N.J., concluded in 2001 that the rate was one in 150. A cluster of studies done from 2001 to 2005 found results ranging from one in 150 to one in 170. Autism related agencies agreed to use a figure of one in 166

The national numbers are based on two CDC surveys encompassing 22 states, including Pennsylvania.

The Autism Society of Pennsylvania estimates there are about 75,000 people statewide with some form of autism and about 4,000 in the Pittsburgh region.

Still, Minshew said the figure may be even more startling. She said the CDC study could not reach home-schooled children and those in private schools.

Most pediatricians are not trained to diagnose autism, Minshew said. Regional centers for diagnosing and treating autism are needed, she said.

Collecting information on the number of autistic individuals is also hampered because families are not open to discussing their children. Society tends to cut off ties with families with autistic children.

Minshew recalled one parent of an autistic child who noted, "We don't have friends anymore. The only friends we have are the people who have an autistic child. Our old friends cut away."

MMR a cause?

Whether mumps, measles and rubella vaccinations are a cause of autism, especially the spike in autism cases in the past 20 years, has been debated.

In the June 16, 2005, edition of "Rolling Stone" magazine, an article titled "Deadly Immunity," by Robert F. Kennedy Jr., theorized a link between thimerosal in inoculations and autism in children.

Thimerosal is an antiseptic and antifungal agent that has been used as a preservative in vaccines, immune globulin preparations, skin test antigens, anti-venoms, ophthalmic and nasal products, and tattoo inks.

The compound is being phased out of most childhood vaccinations. Packaging the vaccines in single-dose vials eliminates the need for bacteriostatics such as Thimerosol.

Dr. Andrew Wakefield, of the Royal Free and University College Medical School in London, was the lead author of a controversial 1998 research study, published in the Lancet, which reported bowel symptoms in a selected sample of 12 children with autistic spectrum disorders and other disabilities, and alleged a possible connection with MMR vaccination.

Although in the paper the authors stressed no causal connection had been proven, Wakefield called for suspension of the triple MMR vaccine, recommending instead that the three vaccines be administered with one-year gaps.

A controversy surrounding his findings occurred in 2004, when it was reported in The London Times that some children in the study were recruited by an attorney preparing a lawsuit against a vaccine manufacturer.

The interpretation of the possible connection to vaccination, but not the report itself, subsequently was retracted by 10 of the paper's 13 authors.

General Medical Council, the regulator of the medical profession in the United Kingdom, has since investigated the reports' claims and is preparing to conduct hearings.

Currently, the U.S Court of Federal Claims is conducting hearings on whether the vaccines caused autism. More than 4,800 families have filed claims alleging the link.

Parents of autistic children - especially those diagnosed from 1988 to 2000, when Thimerosol was used in the vaccines - believe a connection exists.

Matt Kadash was developing at the same rate as a normal infant, and was even ahead of the curve. He spoke words at 13 months, for example, his mother, Sandy Kadash recalled.

Then, suddenly, his development stopped. He stopped speaking. The Amity woman is sure she knows why.

"I blame it on the MMR shots," Kadash said.

Kelli Tencer, of California, also believes the MMR vaccination is the root of her son's autism. She saw a dramatic change after he received the vaccination at about 16 months.

"I believe there is a direct link," Tencer said. "My son was fine and developing normally until he had that first shot."

Minshew, though, said the connection is purely coincidental. She said children usually show signs of developmental regression consistent with autism from 12 and 22 months of age. MMR shots are routinely given during that period.

She challenged parents who still believe in the link to view videotapes of their child's first birthday to look for signs of early regression.

"They are not oriented to other people," Minshew said. "They do not get the idea of presents, cake, celebration - the interaction with other people."

Chris Buckley can be reached at cbuckley@tribweb.com or (724) 684-2642.

Chris,

Do you ever stop when you hear all this and let the bat of common sense come up aside your head?

Anyone that repeats the "just better diagnosis" mantra cannot live in a reality based world. The story seemed to be about the CDC released data of 1 in every 150 but seemed to leave out the biggest shock that the CDC's study found. The study surprised the CDC by showing that diagnoses nationwide was abysmal. The CDC announced that their study showed that parents concerns and fears were being downplayed, ignorned, and neglected on average of 1 1/2 years after they expressed grave concerns. Does that sound like better diagnosis. No, instead, it sounds like what many of us know, that over 90% of all Autism diagnosis are parent driven. If this is the case then it would not have changed over time. A parent 20 years ago would have demanded just as adamantly "what is wrong with my child" as parents are demanding now.

Autism is not a unique skin rash that could be easily mis-identified as another rash. It is not a subtle condition and the signs and symptoms not easily missed. Missing autism is sort of like missing a grand mal seizure. The majority of those diagnosed will never live independently. They will require constant care for the rest of their typical lifespan. Autism is so devastating, there is no way it was ever missed in the past. When high-funcitoning or Aspergers is mentioned, even most of these individuals, while they may be verbally adept, will not lead an independent life either. Only the lightest affected could possibly "slip through the cracks" and those are probably more the ADD/ADHD area than autism. The criteria required to be met for an autism diagnosis under the DSM IV code are devastating and must incompass a majority of the areas across the Autism spectrum.

These so-called experts quoted in stories such as yours would like the American public to believe that our personal and collective memories are faulty. That we all lived among these people in the same numbers as now and we simply cannot remember them, but they were always there.

Many say other diagnosis are now more properly labeled Autism and were just mis-labeled or misunderstood before. How do they explain every school in America that is going broke from the sheer numbers. How do they explain the 20 year tenured teachers that cannot fathom the explosion in Autism and have never seen the kids in the numbers they are seeing now. Tiny towns with "Autism" classrooms, that never had an autistic student in over 50 years. Tiny towns with classrooms of kids unable to function in typical classrooms, unable to learn in a typical manner, unable to pay attention, sit still, grasp basic concepts, etc. etc. It would not have mattered what these kids were 'labeled' in the past, the schools still would have had to accomodate them, no matter the name that was put to their disability. But we all know that was not the case. Schools lack the facilities, staff, and training to deal with the tsunami of affected children.

I grew up in a town of less than 1,000 people. In my 12 years of education I never knew one kid with autism, or anyone I can remember that would have come close to meeting the criteria. I knew one child a few years older than me who was mentally retarded. 1 child many years older who was blind, and one a few years younger who died of cancer. My same home town now has Autism classrooms bulging at the seams. After coaching there for five years, four former athletes have informed me they have children diagnosed with severe Autism. Including myself, the former coach, that gives us five children with autism from 47 different mothers. But here in Oregon the rate state-wide is 1 in every 98. Of course this does not include ADD/ADHD, nor does it include the huge numbers of children now with life-threatening food allergies, the 1 in 5 with asthma, the 5000% increase in kids with diabetes, arthritis, cancer, etc.

Those like Dr. Paul Offit, owner of a vaccine patent, like to attempt to scare the American public with threats that if autism or other serious immune system diseases are connected to vaccines that people will stop vaccinating their children and serious childhood diseases will return. Just talking about vaccines and Autism, he speculated could destroy the health of American children. UH, Hello. It seems Dr. Offit is a little out of touch with reality. He is assuming we have some gold standard of health in our children today that merits protection. Yet new studies just today from Offit's very hospital and designed and run by Harvard University say our children are sicker than in any generation. Perhaps Americans aren't buying it anymore. Parents see their children's classrooms with Medicine "cubbies" where nearly half of all student have regular medication including the devastating numbers of children on anti-psychots, risperdal, ritalin, and more. Children with ANA kits, inhalers, and insulin injection kits. When you look at the life-shortening devastating lifelong illnesses children are now suffering from it sure makes a week with the measles look like a picnic. If Dr. Offit was more of the same, protect the great health of American children, no thank you. If he is proud of the ranking of 37th in the world of infant mortality...no thank you.

I saw a mainstream media poll the other day in which 89% of respondents replied that they believed in a link between vaccines and autism. Maybe all of us parents aren't such fringe whackos after all. The pharmaceutical companies have proven their motivation with lies and falsifications of drug trials and Americans are rightfully sceptical of all their claims now.

Just like global warming, the debate is over. In fact, besides government denials, there never was a debate. Injecting mercury into childrens' bodies is criminal, no debate. Mercury is a known neurotoxin, no debate. Mercury causes neurological damage, especially in fetuses and children, no debate. Only in corporate America can there even be a debate over injecting babies with the 2nd most toxic substance on earth. There is no debate, only corporate greed and self-preserving denials. An Autism Mom said the other day, "Autism spilled on a school room floor is a toxic event, the schools are shut down, the hazmat team called in, young people decontaminated, health screenings are done, and a major long term clean-up occurs. But, inject mercury into an infant and it's called a well baby visit".

The medias refusal to use common sense, to ask the tough hard questions is only making them look as bad as the now professional liars, protecting their own collective butts. I don't know how you can even write this stuff anymore without laughing or crying, but you have to have lost all common sense to not question even the most basic tenets of the crap now being spewed forth by the self-protectionists. Can you even have two neurons left to rub together and not see the truth? Apparently not.

Kendra Pettengill

Roseburg, Oregon

Mother of a recovered child, formerly diagnosed with Autism