IACC Meeting (9/23/14): Video excerpt of public comment by parent, Megan Davenhall, with transcript

[proverbialwisdom]

"AT LEAST WE CAN BEGIN TO LISTEN MORE CAREFULLY AND REALIZE THAT THIS IS A MULTIFACETED PROBLEM WITH PEOPLE HAVING VERY DIFFERENT EXPERIENCES."

- Dr. Thomas Insel @2:23 (bottom video)

We are the experts #hearthiswell

Published on Sep 23, 2014
Thinking Moms Revolution

FULL TRANSCRIPT:

"What we're here to say is absolutely nothing new, nothing that this committee hasn't heard before from multiple public commenters over the years. There's a huge subset of individuals with the label of autism who were not born with autism. These children, young adults and adults who were born as typically developing healthy children and then regressed into autism. This is not the autism that you see in our highly functioning adults, the way that Mr. Robinson described himself. This is not what we are talking about. But we don't have another word; we have autism. So we are talking about high functioning adults, people who love who they are and should celebrate who they are. And we're talking about kids who are sick. They are two different things, and we call it all autism.

"This autism is extremely different. It's a different experience for these individuals. It's pain. It's bowel disease. It's mitochondrial dysfunction. It's seizures. It's immune deficiency. And in many cases, it is a silent plea for help through head banging, and self-injurious behaviors and aggression. Parents have been searching for treatment for these co-conditions for years. We pay out-of-pocket because insurance won't cover the staggering cost of healing the many physical ailments our children suffer from. Our kids who fall into this model of autism, the ones who are healthy and become urgently ill, need to be treated with respect and like human beings who are sick. Their physical symptoms need to be addressed by medical professionals in the same ways that they would be handled in a person without autism. Never again should a parent have to hear from a doctor or a psychiatrist that a physical problem such as diarrhea or constipation..., that it's just part of their autism. But it still happens. That is what parents are hearing. When you go to the pediatrician, they hear, 'Well, kids on the spectrum, have diarrhea. They have constipation. It's part of autism.'

"I talked about my son's regression at the pediatrician's. A regression. A typically developing child regressed into autism and I was told, 'Well that's the very definition of autism.' We need to rework how we're talking about these things in pediatricians' offices across the country. And you need to be the change for that happening.

"Parents have been telling you for years that there was some trigger that sent their healthy child into a physical and developmental tailspin. They watched this happen to their kids. And we're ignored. You ignore our firsthand eyewitness accounts of damage to our children. You hold these meetings that accomplish nothing. And [you] give us the mike a few times a year and we tell you, 'Autism is medical.' This version of autism that the parents come here and talk to you about. Let me be clear on that. Our children get better when we treat the medical problems they have. Their behaviors that land them on the spectrum in the first place, improve when they get healthier. And you don't hear us. You give us fifteen minutes of your day and interrupt parents who travel on their own dime to come here and speak to you. If they go over their allotted three minutes, they get interrupted--as long as we end the meeting by five.

"I want to thank Dr. Cory for recognizing the one thing I haven't heard here in all the time I've been listening, watching and coming to these meetings. I heard the phrase, 'The parents are the experts on their children.' I heard it from other people in the room too. And the bottom line is, we are. We are the experts on our children. We see what they are living with day in and day out--the medical conditions that we are trying so desperately to find the answers for. But we receive none.

"I hope today that you hear this well, treating the co-occurring conditions is critical, but it is absolutely not enough. This committee needs to start getting serious about prevention. You need to start investigating the dangers of vaccines, pesticide exposure, antibiotic overuse, chemicals that are in our food supply that we know cause neurological dysfunction.

"We have a medical system that is run by pharmaceutical companies who don't care one bit if our kids are healthy or not. This committee needs to start working with our government to lessen the toxic burden our children are exposed to. We parents are watching and don't see this committee doing much of anything.

"The autism numbers continue to climb with no end in sight. And we have been screaming into the abyss. We've been telling you what is happening. We've given you clues to study, but you ignore us.

"Are you afraid of what you will find? Afraid of doing the right thing until it's too late? It's quickly becoming too late. How many more kids will die in ponds or in pools, because they wandered off and drowned? How many more diagnosed will it take for you act? This epidemic and the U.S. government's inaction is creating a vocal, intelligent, passionate army of loved ones that has reached a critical mass in number and will not back down. We'll be at every one of your meetings. We want to hear about what you're going to do about these co-occurring conditions and we want to know what you're going to do to prevent the rise in autism. It can't be ignored any longer. We've been telling you these things for well over ten years and what I want to know today is, who in this room is going to be a champion for this? Who will stand up and force the independent study looking at causation? Or spearhead individualized effective treatment for our sick children? If that person is in this room, now is the time to stand up.

"Thank you for your time. And on a separate note, I really would like to thank Lyn Redwood for always being a voice for the families that have been screaming this. She asks the hard questions and she's not given up on that job. So thank you."

Follow-up interview here and discussion by Anne Dachel:

http://www.ageofautism.com/2014/09/thats-all-there-is-folks-the-government-can-do-nothing-more-about-autism.html

THAT'S ALL THERE IS, FOLKS...

By Anne Dachel
September 30, 2014

<>

Megan, after your heartfelt plea to the experts in the room, did anyone respond to what you said?

The response was a general discussion about all three public commenters. John Robinson spoke first and stated again that he doesn’t believe the vaccine link to autism, but then questioned whether or not the belief that vaccine cause autism is a widely held though out the community. He admitted that as public servants, the committee should investigate vaccines if the public truly believes that there is a connection.

Lyn Redwood followed up by explaining how she learned that vaccine induced autism is biologically plausible. She discussed studies that were altered and had data changed to affect the outcomes to show that vaccines are not linked to a higher rate of autism. She then suggested that the committee bring these findings of fraud to the secretary and request special counsel to further investigate the fraud.

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Did Dr. Insel acknowledge your remarks? What was his response?

Dr. Insel did not directly address my remarks. He went on to discuss what the committee could and couldn’t do and made an analogy of autism being like a fever. That the fever could be cause by ebola or strep throat, but that it presents the same way and that we are in the ‘early stages’ of this (meaning autism) and that it is all so new, despite parents coming to the IACC for years and discussing co-occurring conditions, vaccines and treatment options.

INSEL'S RESPONSE (This was where he said, 'We have no money. We have no ability to fund anybody to do anything.')

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What is your opinion of the attitude of IACC toward autism as an epidemic and the link to vaccines?

I don’t think the IACC will ever investigate the vaccine/autism link. It is far too messy for our government have this link exposed. The vaccine program in our country continues to balloon out of control, because it is a huge money maker for the pharmaceutical industry. There are lobbyists in DC that get paid big money to make sure that no one looks too closely at what causes autism. I think that the IACC will continue to sit on their hands and do nothing with the information that Lyn Redwood presented to the committee at the meeting.

While Insel sounded like he was powerless to get anything done about autism, I found this official IACC statement from April, 2014:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee, composed of Federal and public members, that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD).

Consider what that means. Thomas Insel just threw up his arms in response to Megan Davenhall and said he can't be expected to do anything about autism and the IACC website says that HHS has assigned ALL EFFORTS regarding autism to him and his committee...

RELATED: #CDCwhistleblower

[blackspade]

1. Interesting, but the focus is again on vaccines ...

To the exclusion of everything else.

Vaccines have been around for 60+ years so the recent rise in autism is unlikely to be the root of the problem. But anti vaxers have latched onto it for whatever reason.

I think a much better research avenue would be to look at the food supply and chemical exposure.

[proverbialwisdom]

2. VIDEO: CNN Features Rebecca Estepp and Dr. Harvey Karp on Parental Choice

CNN VIDEO: http://www.cnn.com/video/data/2.0/video/bestoftv/2014/10/03/cnn-tonight-parents-decline-vaccination.cnn.html

Added on October 2, 2014

http://www.ageofautism.com/2014/10/dachel-media-update-cnn-features-rebecca-estepp-and-harvey-karp-on-parental-vaccination-choice.html

TRANSCRIPT EXCERPTS:

Becky explained that she stopped vaccinating her younger son because of the vaccine reaction her older son experienced.

"I took him in for a Hepatitis B vaccine, he immediately a hideous diarrhea, later that night, developed a fever, arched his back, screamed. If I would have known, as a young mother, these were signs of encephalopathy--brain swelling, I would have known to get him to a doctor right away. After that evening his health deteriorated for the next two years. At two years and nine months he was diagnosed with autism. We didn't put the pieces of the puzzle together until I had my second son who also started to exhibit some strange vaccine reactions. At that point I had to really weigh the options. My husband and I decided that our children's neurodevelopment was more important than vaccinating for these diseases... They could have permanent damage."

When Becky was asked about what her unvaccinated children might do to herd immunity she said,

"I say that it's their right to vaccinate their children and if vaccines work the way they're supposed to, their children are safe. There's no reason to worry about my child; their children are vaccinated. I'm the one who's taken the calculated risk for a very good reason."

Dr. Harvey Karp was asked for his opinion on opting out.

"We all live in a community together and if you don't get vaccines, your child's going to have a higher risk of getting illnesses. Sure, if the other child's vaccinated, that may protect them. We wish vaccines worked a hundred percent, but they don't work a hundred percent. So it does increase the risk that a child even who's had vaccines can get an illness, but I'm more concern about the baby in the family, or your next door neighbor's baby. Maybe they're not old enough to get the vaccine yet and your toddler plays with them and can spread the illness to them. That poor unprotected child is totally at risk. And we're especially concerned about whooping cough, which is more contagious than any other known disease. If you live on a farm, I have no problem if you choose not to get the vaccines, but if you're benefitting by living in a community where everyone else is getting vaccinated and the next baby born on your block is depending on your children getting vaccinated, I think it's your responsibility. Otherwise you're really freeloading on the efforts made and the exposure made by the other families."

Becky was asked for her response.

"The problem that my children had was that I took my older son to an immunologist after he was diagnosed with autism. He ran a titer test. Every vaccine that we tested, my son did not develop titers. So even if I continued to vaccinate him, he would still be unprotected. There's no reason to vaccinate. The did not receive protection from his vaccines. He was vaccinated but he was not immunized. ...

Alisyn Camerota then did something I rarely ever see in broadcast journalism--she actually facts to challenge the efficacy of vaccination.

"I have here ... the whooping cough report. This is from the California Department of Public Health and it talks about this year--how there's been this spike in pertusus, as it's called. I want to read it to you because it's pretty fascinating. Pertusis is cyclical and it peaks every three to five years as the numbers of susceptible persons in the population increases due to the waning of immunity following vaccination. In other words, the vaccine is only good for five to ten years and then you're no longer immunized. It's not just parents in other words, who are opting out of vaccinating their kids, it's parents who think that their kids are immunized and it's worn off."

Karp:

"That's absolutely the case. We worry most about the littlest children because they're the ones who die from whooping cough and have to be hospitalized. Anyone can get whooping cough but it turns out to be more of a bad cold, a terrible cough as you get older. This is the crazy thing. We've weakened the vaccine. We were seeing some side effects of the vaccine, so to protect children from side effects, we weakened the vaccine. We made it more purified. And as an effect of that, it made the immunity last not as long as the old vaccine. It was more purified, so we have more children with fewer side effects.

Dr. Karp completely ignored what Becky said about her son's vaccine reaction. ("Wait a minute. I thought vaccines don't cause autism, but this mom claims they did for her son and the doctor here didn't say anything about it.&quot

Karp acted like vaccinating everyone for whooping cough would protect children too young to be vaccinated until Camerota pointed out that the vaccine's effects wear off in 5 to 10 years. Then he acted like he knew all about it. ("There must be millions of adults running around with no immunity to whooping cough so what good does it do to the insistence that every child be vaccinated?&quot

Karp did acknowledge that the old whooping cough vaccine had serious side effects so they replaced it with one that is less damaging and less effective.

<>

By Anne Dachel

RELATED: http://www.ageofautism.com/2009/06/aap-spokesperson-dr-karp-speaks-of-world-wide-rise-in-autism.html
(written 5 years ago by Anne Dachel)

[blackspade]

3. I'm not sure what your point is.

Are you saying that vaccines cause autism based on anecdotal evidence?
Was the link proved, or rather was it the allergic reaction that caused it via brain swelling?

How does this explain the increase in autism?
Is there an increase in allergic reactions?
If so why? Vaccines have been around a long time, why the increase now.
Maybe chemicals from processed foods?

My point is this, vaccines have proven effective for generations with very few problems.
Linking them to the increasing incidences of autism is not based on science and diverts attention and resources from the actual cause that seems to be in need of identification, pronto.

[proverbialwisdom]

4. My point? It's important to research "Senior CDC Scientist & Whistleblower, Dr William W. Thompson,"

and also watch all the videos on the thread (IACC meeting and CNN). The simplistic talking points presented in your post are out-of-date. Additionally, arguing semantics just won't cut it anymore (please see Dr. Thomas Insel's remarks, above).

Oh, yes, and you're arguing exactly what Dr. Harvey Karp did 5 years ago (see 2nd Dachel link) although judging from the CNN interview the other day, he's moved on, as he should, and pointedly did not confront Rebecca Estepp on her related assertions AT ALL, as he should not.

[blackspade]

5. My arguement is that linking Autism to vaccines has not been scientifically proved.

So yes, I guess my 'talking points' are simplistic in that I want to see some science that backs up the anecdotal 'evidence' and addresses my questions above.

[proverbialwisdom]

6. I'm sorry. No offense intended. (nt)