June 27, 2007

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


2 comments:

John Elder Robison said...

As an Aspergian adult, I follow discussions like this with some interest.

I've learned a lot more since writing my book, Look Me in the Eye.

It certainly feels to me like there are more autistic people than when I was young. But the hard data . . . I don't have any.

One thing I notice . . . when I was young, autistic people were all born that way. Today, we have some number of children who are seemingly normal, and they become autistic at 4-5-6 years of age. That's troubling. And I don't know where it comes from. Vaccine certainly sounds like a possibility, but I'm not a medical person. I'm just a grown Aspergian.

When I do events the number of seriously impaired individuals surprises me, but to put it in perspective, autism events do concentrate such people in one place and I was never exposed to that before. So it's hard to judge "how much more common?"

You may find my blog interesting, because I was pretty non verbal and non interactive as a child and I'm reasonably fine today. So there's hope for kids like yours, and I'm an example of how things can end up OK.

best wishes
John

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