Parent of Severely Autistic Adult Daughter On Clinton Autism Plan
Hillary Clinton’s Autism Plan Fails to Impress

Age of Autism Weekly Wrap: The Best Idea -- Listen to the Parents

AofA Red Logo Ayumi YamadaBy Dan Olmsted

Over the past few weeks we’ve taken a look at some of the bad ideas that combine to cause the ongoing autism epidemic – including the very bad one that there is no epidemic.

In fact, that is the worst idea of all, because it stops discussion before it starts. If there’s no epidemic, then there’s no environmental factor in play. Autism is part of life, one might even say part of God’s plan. Ergo, we should put all our efforts into helping the affected while ignoring the causes and the calamity, as Hillary Clinton’s feckless proposal this week manages nicely.

You can see that play out in a recent spate of books by authors who want to normalize autism and make it seem, in the Church Lady’s word, so very special, as opposed to so very disastrous.

Thus in the new Smithsonian, John Donvan and Caren Zucker find a few pre-Civil War case descriptions that might include autistic features and conclude, “Still, the dominant narrative has been that real rates are going up, and the United States is in the midst of an autism ‘epidemic,’ even though most experts see that as a highly debatable proposition. Moreover, the 'epidemic' story has helped crystallize the notion that 'something must have happened' in the near past to cause autism in the first place. Most famously, some activists blamed modern vaccines—a now discredited theory.”

That paragraph shows the potency of the "no epidemic" premise -- no epidemic, no vaccine link to autism, no need to worry your pretty little head. 

So much for bad ideas. Now for the best one: Listen to the parents. After pondering the trajectory of autism and thinking about reader comments, I realized this is really the universal antidote to the “autism awareness” and “no epidemic” idiocy.

First of all, most parents don’t think autism is any kind of blessing. Discussing the book Neurotribes, “Greg” commented on AOA:

“Bad Idea number 15, the neuro-diversity movement and autism as a gift: It's a gift to be a non-verbal kid, past early childhood and still in diapers. And, if you're high functioning autistic adolescent, sitting at home on your butt, unemployed and waiting for your aging folks to look after you, your autism is also most definitely a gift.”

And “Reader” said:

“Stoopid idea number 7: Pretending that autism is a good thing as in Neurotribes. Yeah it's just great that 30% of people with autism communicate not at all or minimally, 82% unemployment for adult autists, high number wandering and drowning deaths relatively, high murder suicide rates. High numbers with sensory and pain issues. It's just f'g great.”

But the main reason to listen to parents is that they know what happened to their children. As The New York Times famously wrote: “On Autism’s Cause, It’s Parents Versus Research.” Yes, it is, and the steady drumbeat of parental testimony about vaccination, illness, regression and autism trumps the conflicted, contorted “research.”

As Sarah Bridges wrote in Spectrum magazine about RFK Jr.:  “In 2006, Kennedy wrote an article for Rolling Stone magazine called Deadly Immunity. The response to his piece was overwhelming: following the publication, Kennedy received thousands of letters and emails from all over the world. 'The astounding thing was how alike all of them were and that people from Mississippi to New Delhi shared such identical experiences. Here is the typical scenario I heard: A mother took her toddler to the doctor where he received a spate of vaccines, became ill that night, often with a fever, sometimes with seizures, then lost the language he had, developed stereotyped behavior and regressed into a looking-glass world of debilitated relationships and social isolation. Essentially,' Kennedy adds, 'their lives were plunged into unimaginable agony.' It seemed imperative to Kennedy to keep getting the story out to prevent the catastrophe from damaging other children.”

Not listening to parents unites mainstream media and medicine. Listening to them unites RFK Jr., this humble blog, Andy Wakefield and many others. In no other universe but Autism Denial would this kind of evidence be dismissed as mere "anecdote" and relegated to the dust bin, while CDC studies exonerating the MMR and thimerosal are treated as gospel.

Last week I wrote about my adventures in the 1970s as a young investigative reporter. I’m convinced, on the basis of long experience, that if journalists were as deaf to other concerns as they are to the reality of vaccine-driven autism epidemic, Richard Nixon would still be president (or something like that).  The idea that we needed to listen to our readers was drummed into us. The idea that doctors need to listen to their patients – and, as Andy puts it, “listen to the mother” when the patient is an infant – is still the best idea in medicine.

As commenter Ottoschnaut put it: “Bad Idea: 'Ignore the hundreds of thousands of first hand, eyewitness reports of parents who witnessed vaccine injury unfold in real time.'”

That, of course, is why the “discredited” vaccine-autism debate rolls on, because thousands of parents know exactly what happened, way too credible and way too many to silence with appeals to conflicted, self-interested, shoddy “research” that suggest ordinary people can’t be trusted, that wisdom belongs to the priestly class, in this case the medical, legal, and journalism establishments.

This can’t last forever, especially when the damage keeps rising at the rates we are seeing now -- at epidemic rates. Our main task is to find the most effective and direct and immediate ways to blast through this denial of the age of autism, help sick kids and share the truth with anyone willing to listen. More and more people are.

--

Dan Olmsted is Editor of Age of Autism.

Comments

Carol

Donvan and/or Zucker interviewed Brian Deer for their extensive material about Andrew Wakefield appearing in In a Different Key. They also provide the url of Brian Deer's response to Dr. Wakefield's lawsuit. I don't see any evidence that either Donvan or Zucker asked Wakefield for an interview. Did I miss that?

Nor do they provide the url of Dr. Wakefield's affidavit. That must be an oversight. Here it is: http://issuu.com/wakefieldjusticefund/docs/1_3_12__plt_original_petition

Stephen Simac

Dan,
Thank you for your support in the battle for Health Freedom.
My book, Mandatory Vaccinations = Totalitarian Inoculation is a fierce response to the corporate/government campaign to ram SB377 through California's legislature and the nationwide war on vaccine exemptors. Informed opposition to mandatory vaccinations and/or recommended schedules is needed to defeat similar laws in other states, and reverse it politically or challenge it legally in California and states that have banned Freedom of Choice for parents of school children.
It refutes false claims and medical myths repeated by public health officials and corporate media to the public. It examines the history, safety and effectiveness of childhood vaccines including Measles, Mumps and Rubella, Diphtheria, Pertussis and Tetanus, Polio and others. It dissects the arguments used to support this bill and rebuts them conclusively. It reports on suppressed legal and medical news, scientific fraud, historic trends and the propaganda campaign to pass SB277.
MV=TI is a concise introduction to the labyrinthine world of vaccine information. It is intended to strengthen opponents understanding and arguments to win this public relations battle. This is a long war, but passage of this bill in California and introduction of similar bills in a dozen other states spurred many thousands of parents to join the fray. This book will give them a sharp weapon to slice through the hot air balloons of pro-vaxx arguments by demanding informed consent, safer vaccines and schedules.
This book supports readers willing to combat public ignorance that allows medical authorities and pharmaceutical corporations to lie without challenge or consequence. It is written for parents and adults who want a succinct, entertaining and informative entrance into the daunting catacombs of vaccine research, both pro and con.
Stephen Simac has been researching, practicing and reporting on health and wellness for decades. He has a Masters degree in integral health education and somatic psychology. He is an advocate of Freedom of Choice in Medicine, informed consent and reducing disease through healthy habits, not forced submission to viral brews. He is not "anti-vaxx", but pro-choice for informed consumers.
MV=TI is available on all electronic reading devices and from Amazon in print. Please contact me if you'd like to review it or publish an excerpt.

the Medical Monopoly Series includes Save Trillions with Universal Health Care, Cancer Cathedral: Prevention is the Cure and Mandatory Vaccinations=Totalitarian Inoculation
I'm not sure if I already posted this, so delete if repeat

kapoore

I quickly got a glimpse of the video of one woman in the video posted here saying that we shouldn't just look at one causality for autism but all of them. Groan!! It isn't that this is a bad idea but in the middle of a full blown epidemic you concentrate on the most likely cause and worry about the other things later.

For example, let's take the bubonic plague that swept through the world in the early 14th Century and killed two-thirds of the European population. Give that problem to our modern researchers and one would be claiming it was all due to sanitation, another to the rat population, another to poverty and starvation among the poor, another to possible crop failure and bad weather. Yes, all these are true but if the fleas hadn't been infected with the bubonic plague wouldn't have life struggled on as usual despite the poverty, starvation, rats, bad weather, failed crops, and poor sanitation...just as it had for centuries before and after. No it was the plague (bubonic) that caused the plague.

What was interesting about the plague as well was that those with the most disease experience, those in modern terms who had the most hardy cellular immunity were the ones more likely to survive the plague. Those disease innocent country people who had not been inundated with disease dropped like flies... That brings me to the Amerindians (anthropologists word for American indians) who were practically wiped out by the bad breath of the Spaniards. Yes, a Spaniard Conquistador with hundreds of years of disease experience could practically kill a native by merely breathing on him because he was teaming with disease from his rotten teeth (which the natives didn't have) to his diseased saliva.

I recommend a book Plagues and Peoples by William McNeill. This is history book, not a medical book, that chronicles the history of the world from the perspective of disease. Disease is aggressively seeking out new territory and when an ecological niche opens up it is quickly colonized by opportunity seeking bugs. It's been awhile since I read the book so I looked through the index for vaccines...not mentioned. I think it's a good idea to rethink disease from the broader perspective. We live in a world where disease is opportunistically traveling around the globe in search of a host. Those who have disease experience are better equipped to cope with the enemy. What we have done in dismantling our first line of defense with our cellular immunity is opening the door to unknown plagues... and maybe those plagues are diseases our ancestors had once conquered but now we have become vulnerable to again through vaccination like chicken pox, measles, and mumps. Diseases that once wiped out entire populations of natives, but in my generation amounted to ten days in bed with a relatively mild infection.... we're going back in time not forward.

Cynthia Cournoyer

Re the Smithsonian: Found some symptoms, but didn't rule out lead poisoning or mercury poisoning in the environment. The "always there" crowd think that simply identifying an historical case, makes their case stronger. The fact that a treatise in an academic publication needs to address "always there" shows how desperate they are to discount the epidemic.

Mentioning Leo Kanner without referencing Dan's role in researching ground zero in the autism epidemic is irresponsible.

david m burd

Anne,

If I recall correctly, your example "like the research done in Britain a few years ago" consisted of telephone interviews, interviews that of course could only be with interactive adults that could perceive and then accurately answer questions over the telephone..

Clearly the great majority of those autism-afflicted could not even get on the telephone much less provide accurate answers. This "research" is a perfect example of Interview/Interviewee Bias, and has no merit, and was massively "skewed" as you said.

Twyla

So well said, Dan!

There is another condition which also is afflicted with this huge gap between mainstream govt/med views and the experiences of the patients and a few brave alternative practitioners who treat them: Lyme disease. In the movie "Under Our Skin" one can see the same kinds of dogmatic declarations by mainstream doctors and govt officials as we see in relation to autism.
http://www.underourskin.com/film/
http://www.hulu.com/watch/268761

In the book "Cure Unknown: Inside the Lyme Epidemic" the author - longtime science journalist Pamela Weintraub - talks about the issue of published science vs. patient experiences:

"Medical science demands that we find a better answer to the question 'What is Lyme disease?' Conversely, Lyme disease demands that we answer the question 'What is medical evidence?' As consumers of medical information, we take for granted the idea that if a study has been codified in a medical journal, it is probably correct. But Lyme disease teaches us something else -- conclusions may be oversimplified, exaggerated, or widely disputed. Data might be massaged. Results might be embraced, but turn out to be false. When proponents of a viewpoint chair the ad hoc review committees of almost every major medical journal, they become gatekeepers of information and de facto arbiters of 'Truth.' If we are rejecting patient anecdote for the 'higher truth' of evidence-based medicine, shouldn't we make sure that the evidence is solid, objective, sound? Don't we need to know whether experimenters have included all the evidence, or just part of it, or whether the references cited to make an argument say what the authors contend? Don't we need to look at the methodology? After hearing the results of a study, don't we need to ask the next hard question: Is the study subject to circular thinking? Is the evidence any good?

"As I made my way through the Lymelands, I was instructed by the skeptics' mantra: Extraordinary claims require extraordinary levels of evidence. Long trained as a science journalist, I started by looking for evidence in the science. Despite my personal experience [she & her family were infected with Lyme], I truly believed that the patients, not the researchers, deserved my skepticism most. I started out as a journalist in search of the evidence but found the evidence convoluted, twisted, misleading, vague -- subject to continual change and challenge not just by patients and their treating physicians, but by many experts in the academic mainstream. Is evidence of this quality more compelling than tens of thousands of anecdotal reports, especially when those reports are so disturbing and so widespread? Should we dismiss patient experience because it isn't 'evidence based' while embracing as absolute -- for purposes of diagnosis, treatment, and insurance coverage -- experimentally derived evidence which, when scrutinized, is so disputed, lacking in context, and incomplete?...

"Reporting on Lyme has meant reporting two realities. The first reality is neat and outwardly consistent, but it derives from a disease definition that has a partial relationship, at best, to the experience of that disease in the world... The second reality, the alternate one, is messy and chaotic and awash in confusion. Its language is the language of Babel. Yet the flawed Reality Two -- an open system that acknowledges the vast unknown -- seems the better place to start."
from p. 19 - 20
http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/1250044561/ref=sr_1_1?s=books&ie=UTF8&qid=1445147005&sr=1-1&keywords=cure+unknown

Although she is not a vaccine safety champion, I found her description of these Lyme issues to be so applicable to autism.

Anne McElroy Dachel

Dan, this is the lie that has to be repeated constantly: ALL THE AUTISM EVERYWHERE IS MERELY BETTER DIAGNOSING AND AN EXPANDED DEFINITION OF A CONDITION THAT'S ALWAYS BEEN AROUND, WE JUST CALLED IT SOMETHING ELSE. As long as the public believes the myth about the rate of autism, it'll never be a real crisis. There will never be a demand for real answers.

Part of Hillary Clinton's autism plan includes looking for the rate among adults. I am sure that the skewed results, like the research done in Britain a few years ago, will show a comparable rate. We'll be told we can all relax. Everything is fine. (I can't imagine any president would want the real disaster to come to light during their administration. They'll do anything to cover up the reality of what's happening.)

So the nightmare will continue as long as the REALLY BIG LIE ABOUT AUTISM can be sustained, despite what we see happening right before our eyes. AND IF THE LIE ABOUT THE RATE WORKS, THEN ALL THE OTHER ABSURDITIES WILL ALSO. This includes:

Thimerosal is safe mercury. Vaccines are well-tested. Studies show no link. No science shows vaccines are dangerous. Vaccines don't have serious side effects. Unvaccinated kids have just as much autism. Autism is genetic. Andrew Wakefield was a fraud. Every child should be vaccinated. Parents have no right to exempt children.

What's going to challenge all this is the army of disabled American kids marching toward adulthood. I listen to news commentaries on economics a lot and I hear calls for curtailing entitlements. Too many people are living off the government: unemployment/disability. Imagine when the autism debacle hits. Will we still console ourselves with the myth that all the autism is because doctors suddenly got smarter?

Anne Dachel, Media

Angus Files

For sure CMO “El Chapo, Putin,are looking very approachable these days unlike our own supposedly elected peoples choices.

MMR RIP

 Tony Bateson

The dismissal of parents'accounts is almost criminal given the scope medical agencies have to test any of the hypotheses that surround autism. Here is mine, I say as a parent of fifty years, as an activist developer of resources, as a proactive oral history researcher of autism families that I have still never found any evidence of unvaccinated autistic people. This anomaly has equally been ignored so I say to Mark Zuckerberg 'put your vast resources to the issue of vaccinated vs unvaccinated then lecture me about what you have found' but please don't tell me that you, as a novice father, can offer me advice about vaccination. I don't buy it. Please also don't tell me that association is not causation,when the association becomes rock solid, it probably is causation.
Tony Bateson, Oxford UK

Patience (Eileen Nicole) Simon

Birgit, you should write a book. I have written 6 books, self-published as eBooks on amazon.com. I hold out hope that some day my ideas might be of as much interest as those of Steve Silberman, author of NeuroTribes. I hope that eBooks will remain forever on Amazon's system-server computers.

I am so sorry to learn of your son's death. Next Sunday will be the 21st anniversary of my son Conrad's death at the age of 31. He died of Thorazine 1500 mg per day, prescribed by a psychiatrist on the advice of staff in Conrad's group home. I remain sorry for the group home staff, who were shaken and distraught over Conrad's death. They all attended his memorial service, but not the doctor. She should have been tried for murder, but she still practices psychiatry.

Dan, thank you for this important post. Yes, parents should be listened to, and encouraged to be partners in the search for autism's cause. I have submitted 30+ Public Comments for the next IACC meeting. Let's see if they are discussed as anything more than a source of amusement.

Birgit Calhoun

Parents have the right and the motivation to tell about what ails their children. And if it were not for the anecdotes that parents are telling, these doctors would be ignorant. As it is, right now, doctors feel that their competence is in doubt when parents tell them something they don’t understand. That’s partly because of their unwillingness to listen. That is especially true when it comes to autism. It is also true when it comes to diagnoses other than autism.

I know how much I have been looked down upon by the doctors who have had the "misfortune" to have had to treat my son. In the office they often averted their eyes when they came into the examining room. They didn't want to see him undressed so they didn't see him in a state of starvation (all belly, no muscles on arms and legs). They didn't want to know what I had to say. I said he was in pain. They said that's just the way he is. They were not curious enough to ask about any details. Were they just sorry or were they disgusted that they had been assigned this pathetic uninteresting case. Their reporting afterwards was atrocious. My son was, after about 30 years, diagnosed to have cerebral palsy which is usually discovered at birth. Of course he didn't have cerebral palsy. But that diagnosis was made because it was convenient. I really should write a book.

A gastroenterologist found my son to be severely zinc and vitamin D deficient. He was given a prescription of zinc that contained, I believe, over 300mg of zinc (that's 2,000% of the daily allowance) and of course Vitamin D. This did not cure his GI problems. So we tried to make another appointment with this man. Yes, he was a doctor. We must have called about 30 times for an appointment without getting one. We gave up. We believe the doctor simply didn't want to go to the bottom of it.

An orthopedic surgeon "fixed" a slipped femoral epiphysis by screwing it back on to the bone. After my son died we got the x-rays. They showed that the epiphysis was so rotten that the screws could not possibly have held anything together.

My son couldn't talk. So, there was no fear about a lawsuit. The doctor attempted to fix the contractures after the surgery. My son was in agony and the contractures were not improving. Erik never walked after that. Neither operation should have been done. Erik's Vitamin D deficiency was due to kidney failure. The active form of Vitamin D is made in the kidney. This orthopedic surgeon should have known that a slipped femoral epiphysis is a result of the Vitamin D hormone made in the kidney. Erik's kidney had never been checked. This is not the end of the story. Much later the problem with the kidney was detected. It was a bad problem that did not get any attention.

Eventually Erik died. The doctor at that hospital said it was due to kidney failure. But the pathologist who did the autopsy said that Erik had not died of kidney failure. He had died of severe inflammation of the intestines. This had never been discussed before by any doctor, at least not in my presence. I immediately thought of Dr. Wakefield's study.

Yes parents should be asked, and they should be listened to. But it is so easy to ignore them.

cmo

Looks like the multi-billionaire Mexican drug load “El Chapo” has been captured. I understand that he sells a number of liability free drug products.

Were any of his drug products mandated for use on Mexican infants and children ??? Any “El SIDSO” cases with his products within hours of their use ?

Was he more of a “free market type” person, or did his run to the Mexican legislators to have his products mandated ?

Did he actually ...use or overuse... any of his own drug products... or was he more of a diet and exercise type amigo ?

PANDAS Mom

Looks like Mark Zuckerberg has jumped into the fray as a new parent. He posted a picture of himself with his baby daughter on his lap on FB yesterday and announced "time for vaccines!" I pray nothing happens to his daughter, but if it did, THAT is a parent the world would most likely listen to. His post has almost 3 million likes and countless comments (mostly pro-vaccine, and it looks like dissenting comments were mostly deleted). It's going to take someone extremely famous and well-respected speaking out to start getting through to people.

tears of despair

All great comments!
I am hearing the story of lead in flint water and literally screaming at the radio --so many many parallels. A flint pediatrician said
Something like this " if you wanted to figure out how to keep an entire town and generation down you would do what they have done to Flint". . .the govt denied it the blood tests proved it --they could compare to tests from a few years ago--and now people finally losing their jobs.
All these people who arrogantly deny damage to children --yes Benedetta let's visit them in their cages some day and ask how it feels to be locked up as they locked up our children our lives our futures and even our connection to others in our community with their loud ridicule and refusal to listen. msm and their owners deserve to be locked up too.

go Rand

Sort of a rather slow flu season so far compared to the endless hype of other years.

One might think that Hillary would have had a “very public flu shot” this year to secure a few hundred million in pharma campaign dollars. She could have made a big show out of it by taking the entire family to get the mercury flu shot as that seems to be the only one available.

With the vaccine mandates the law of the land in California, it is now the North Korea of vaccines. I believe it is now under the direction of Kim Jong Pan, another rising star in American politics.

Benedetta

I hope I live to see a trial and people put in prison. Sure I want my kids healthy and happy and safe after I die -- Yeah, that is what I want above all -- but if there could be icing n the cake -- prison time.

I might some day in my walker go look at them in their cages.

pam

Great article. The dismissal of patients accounts especially women and mothers goes back to the Victorian era when hysterectomies were performed to "cure" what the doctors perceived as mental illness(hysteria), hence the name. As a women, mother, and surgeon this happens to me still even with female doctors (trained by men). Hillary Clinton has continually dismissed women throughout her entire career. It won't change now. As a life long Democrat,I could never vote for her.

Louis Conte


This has been an excellent series of articles that lay out the issue with great clarity.

The same pattern of injury that Dr. Sarah Bridges reports was clearly identified in the research leading up to the publication of Unanswered Questions From the Vaccine Injury Compensation Program in the Pace Environmental Law Review in 2011.

The Division of Vaccine Injury Compensation (DVIC) which serves as the intake function of the National Vaccine Injury Compensation Program understood this pattern of injury yet reported nothing.

Another bad idea.

A good idea would be to open those case folders down at the DVIC to independent evaluation.

We called for that almost 5 years ago and might have seen it happen had Pharma sponsored pro-vaccine groups not forced Congress to shut the door on hearings on the NVICP.

Isn't it interesting that our side continually calls for openness, transparency and dialogue while our opponents scream "anti-vaccine!" to silence discussion while suppressing information?

The truth will get out. And when it does, we must insist that those who enabled this disaster be held accountable.

Andrea

Bob,

Love your Horton analogy.

No small coincidence Jim Carrey did the vocie for Horton in the movie.


Patience (Eileen Nicole) Simon

The biggest flaw in the book NeuroTribes is failure to report any research on developmental language disorder, which is the most serious handicap for children with autism. Kanner, in his paper on "metaphorical speech" noted that he had to ask parents for the meanings of odd out-of-context comments made by their children.

Vaccine injury cannot be ignored, but no present day "expert" measures up to Kanner. Parental reports are anecdotal, but these should be carefully compared with developmental milestones in the medical record. I could be wrong, but I don't think this has been properly done, even with the Danish or Swedish womb-to-tomb data archives.

Failure to acquire fluent speech by age 5 or 6 implies disruption of maturation of the language areas in the cerebral cortex. How the brain is affected by vaccines must demanded as a priority for research. I am just a parent, but my 50+ years of personal research has convinced me that damage of the brainstem auditory pathway should be investigated as the reason for failure of normal language development.

I submitted 30+ comments for discussion at the IACC meeting next Tuesday. Let's see what they get around to discussing...

Bob Moffit

"So much for bad ideas. Now for the best one: Listen to the parents."

Ah yes .. if SOMEONE would just take the time and make the effort to "listen to the parents". Reminds me of Dr. Seuss "Horton hears a who" .. recounted here from Wiki:

"The book tells the story of Horton the Elephant, who, while splashing in a pool, hears a small speck of dust talking to him. Horton surmises that a small person lives on the speck and places it on a clover, vowing to protect it. He later discovers that the speck is actually a tiny planet, home to a community called Whoville, where microscopic creatures called Whos live. The Mayor of Whoville asks Horton to protect them from harm, which Horton happily agrees to, proclaiming throughout the book that "a person’s a person, no matter how small."

(To me "Whoville" could just as easily be named "Autismville")

"In his mission to protect the speck, Horton is ridiculed and harassed by the other animals in the jungle for believing in something that they are unable to see or hear. He is first criticized by a sour kangaroo and her little kangaroo in her pouch. The splash they make as they jump into the pool almost catches the speck, so Horton decides to find somewhere safer for it."

(To me .. Horton could just as easily be Dr. Wakefield .. the kangaroo the main-stream media "muddying the waters")

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