TMR goes to Washington: TMR President, Megan Davenhall, a.k.a. Sunshine, spoke to the Interagency Autism Coordinating Committee during their workshop on co-occurring conditions. This is her testimony, based on readers’ replies to a survey we ran.
“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 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. Robison 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 is 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 give us the mic 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. Coury 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.”
TMR President, Megan Davenhall
Preach it, Thinking Moms! I am so inspired by your boldness and bravery to fight for our children. Excellent job!
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Thank you for being our voice. The voice for those of us who feel fragile under autism’s weight. It is a struggle every day not to feel defeated and helpless. But your strong voice and determination buoy all of us in this community, a community we did not choose but which provides all of us with direction, resources, care and hope. Thank you. Beautifully done.
Why pretend we don’t know what causes autism when the CDC’s own studies very clearly point to vaccines? Is a 7.6-fold elevated relative risk among 400,000 infants not high enough? Why the vague references to “some trigger” and “toxic burden?” Why lump vaccines in with pesticides and antibiotics?
Hear this well. Vaccines cause autism. Don’t hesitate to say it just because you’re talking to a bureaucrat whose brother developed a vaccine that harmed our kids. In fact, say it even louder.
Also, autism is medical – but not only for those most profoundly affected. It’s medical for all on the spectrum – including those who celebrate their autism, because vaccines cause a spectrum of harm.
Megan’s passion and tremendous commitment to children with autism are admirable, but we shouldn’t be asking Tom Insel for anything except his resignation. Insel wants to partner with Paul Offit, as he stated at a congressional hearing. Insel is not, nor will he ever be, our friend.
Megan has no trouble whatsoever speaking the truth about vaccines. She will be participating shortly in a meeting with Dr. Insel on the subject of vaccines and autism. However, the fact that vaccines are a huge issue does not mean that antibiotics and pesticides are not extremely important as well. Both are implicated in the etiology of neurological issues in children and adults, along with a number of other environmental factors. The “vague references,” as you call them, are extremely important to people whose primary trigger for damage was not vaccines and Megan would be derelict not to address them.
Also, whether we like it or not, Tom Insel is the person currently in charge of federal autism policy. We may want his resignation (or replacement), as indeed we do, but the Autism CARES bill passed, and he has indicated no desire whatsoever to leave his post, the conclusion being that, at least for now, we have to deal with him. Just wishing that were not the case doesn’t get us anywhere with our agenda. That’s not how we roll here at TMR. We will continue doing everything in our power to induce him to address the real concerns of children and adults with autism, particularly severe autism, and their families — all of them.
There is no scientific evidence that either pesticides or antibiotics are the “primary trigger” for severe autism in any child, although there is certainly evidence that antibiotics play a role in the development of autism in some children and that prenatal pesticide exposure may also play a role (although very minor compared to that of vaccines and thimerosal, if you compare the findings). Studies that looked at pesticides and Augmentin did not eliminate vaccinated children from the samples being studied, therefore it’s entirely possible that no unvaccinated child exposed to pesticides or Augmentin would develop autism. TMR’s own “Mountain Mama,” who described the deleterious effects of Augmentin and Amoxicillin on her child, wrote “Of everything I did wrong, if I could have my pick of one thing to take back, it would be the shots. No question. ”
There is no known case of an unvaccinated child regressing dramatically into autism. So even though other environmental exposures should certainly be studied, they should not be presented as a primary trigger – on a par with vaccines. If our community is not able to prioritize vaccines as causation, then we will simply be supporting pharma’s own defense strategy which is to deflect blame from vaccines onto the thousands of chemicals in the environment.
Also, I did not suggest that you not speak to Insel or IACC. IMO, asking Insel for a study he cannot be trusted to execute honestly is not only a waste of time, but potentially counterproductive. We have six fraudulent CDC studies. Do we need to add a seventh? He’s publicly stated that he wants to partner with Offit on autism research! Let’s take him at his word on that.
I believe time would be better spent initiating a community-based campaign to Congress exposing Insel’s considerable conflicts of interest and poor track record. The fact that “he has no desire to leave his post” does not mean that we, taxpayers and stakeholders, cannot force him out. It’s certainly happened before in government. (And no, I am not suggesting “wishing” he were out.) With Insel in charge, IACC will continue to be useless – or worse.
I would never question anyone’s passion or commitment at TMR and I think you’ve made tremendous inroads, but I would hope that you’d be open to constructive criticism of strategy and message when representing the autism community to IACC.
Of course we’re open to constructive criticism, but as you have to have noticed we do not back off the subject of vaccines as a trigger for a lot of things, including autism. Ever. However, we call them as we see them. I don’t know who you are, but we here at TMR talk to a lot of people with autism and a lot of parents of people with autism. You say that there are no studies implicating antibiotics or pesticides as the primary trigger for any cases of autism. Fine. I won’t argue for that as I don’t know of any. Does that mean that they aren’t the primary triggers for specific cases of autism? Hell no! And I can tell you stories of people who say that they were the primary triggers for their children — some of them completely unvaccinated. Why would I believe the parents who tell me that vaccines caused their children’s autism and not believe the parents who say they didn’t vaccinate, but antibiotics and Tylenol messed their kids over but good?
No one loves our Mountain Mama more than I do, but her experience is her experience. Vaccines were the most important trigger for her son, as they were for a lot of other children, but that doesn’t negate or lessen the importance of other factors. Our own Tex knew that vaccines were a problem and avoided vaccinating her son. He regressed dramatically after general anesthesia. Again I say, we advocate for ALL families with autism.
I spent the early part of this year working quite hard to get Congress to release Insel’s stranglehold on autism policy, as we have been going nowhere fast with him in charge, including getting the community involved with specific Congressional targets. I am certainly all for community-based campaigns to effect change, and I expect to be involved in more going forward, but that still does not negate the fact that Tom Insel is who we are dealing with now. At the very least, we have to ask and we have to record the asking, if only to be able to show Congress that “This is what we’ve been telling him for years, and it has gone unheard. We need to change this system.”
I don’t know what “messed their kids over but good” means, but if the antibiotics did not actually cause regressive autism in an unvaccinated child, then they shouldn’t be presented as an autism trigger of equal importance to vaccinations.
This is not to say antibiotics, pesticides, and other environmental factors shouldn’t be studied. But if we don’t focus on the vaccine science already conducted (but suppressed), then we’ll never get any traction persuading legislators and others of the the role of vaccines in the autism epidemic. After all, vaccination is the primary reason that autism is medical – the subject of Megan’s talk.
Prof, I’m glad you agree we need to change the system. I hope you also agree that we have more than enough evidence for Congress that Insel is conflicted, has wasted millions, and needs to go.
The point of Megan’s presentation was to get them to study ALL the factors that go into creating and maintaining autism, not just the ones they WANT to look at. Whether or not those factors are “autism triggers of equal importance to vaccinations” is unknown and NEEDS to be studied. In addition, we here at TMR are not specifically focused on avoiding severe regressive autism; we are focused on how to get and keep your children healthy. Period. Every single one of the factors Megan mentioned, and others, contribute significantly to the toxic burden overwhelming children today and to the fact that more than 50% of children in this country are chronically ill, many of them with things that are not as bad or obvious as severe autism but are debilitating and respond to many of the same treatments, like ADHD, apraxia, allergies and asthma, that I call the “infrared” part of the spectrum. Some of those children exhibit symptoms “from birth,” and some have severe regressions. Most are somewhere in between, starting out with some symptoms of toxic burden and then reach a tipping point where there is obvious pathology.
Of course we have evidence that Insel is conflicted. We also have evidence that large parts of the CDC and the NIH are conflicted, but unfortunately that is not enough to get the desired outcome as many of the legislators THEMSELVES are conflicted. In addition, many others are scared off by the PR machine that paints all questioning of vaccines as unpatriotic at best and downright evil or insane at worst. We are doing our due diligence and advancing the cause on every front we can find. You can criticize us for not advocating exactly as you would advocate, but that is a fact of life. We have to advocate the way WE feel is best to get OUR agenda across. If you have another agenda and/or another way to pursue it, by all means do so.
Re: “Whether or not those factors are ‘autism triggers of equal importance to vaccinations’ is unknown and NEEDS to be studied.”
Sorry to be blunt, but that’s just plain wrong. I would strongly recommend you contact Hooker or Geier or a scientist who can help you undertand what is and isn’t known about autism causation. If pesticides or antibiotics were triggers of equal importance to vaccination, then there would not have been a 37-fold increase in autism since the 80’s, exactly in tandem with the skyrocketing vaccine schedule, and there would not be dozens of studies that show a strong link between vaccines or vaccine ingredients and autism. Not every pregnant woman lives within a mile of fields that are sprayed with pesticide, but every child is administered vaccines, with few exceptions. Please consider seeking out the advice of a scientific advisor who is conversant with autism causation research, because your statement is just not accurate, nor was your previous statement about primary triggers. We’ll lose even more ground if you persuade large numbers of people to pursue a strategy that equates vaccines with lesser environmental triggers of autism.
Megan correctly focused on autism and I responded to her focus on autism. At IACC, the “A” stands for autism. Not ADHD or asthma. If TMR wants to have a broader focus in its advocacy, that’s TMR’s choice. But I don’t accept that IACC is the correct forum for asking for studies for other disorders as you suggest.
Thanks for giving me permission to pursue my agenda. It’s essentially the same as that of most people in the autism/vaccine injury community – to win just one fight that’s eluded us in a very big, tragic way for 30 years – or more. And yet, even though we’re losing on that one front, and even though a large body of science already supports vaccine injury causing autism – you want to throw in pesticides and antibiotics and suggest that those might be causing the autism epidemic rather than vaccines? If that’s your agenda, then you’re diluting our message in the autism community and you’re playing right into pharma’s hands. Pharma doesn’t care about pesticides or off-patent antibiotics. They care about their golden egg: vaccines.
Thanks, Unity, but I don’t think I NEED “Hooker or Geier or a scientist” to help me understand what is and isn’t known about autism causation. The increase in autism is ALSO right in tandem with the increase in pesticides. Is that “proof” of either of them as the primary cause? NO! It’s suggestive for both of them. EVERY woman — who doesn’t go way the frickin’ hell out of her way to avoid them — EATS pesticides every day, as does her child. You may not have heard stories like the ones I have of children — with autism — who started eating all organic food WITHOUT pesticides and got better. And you’re right, Pharma doesn’t care about pesticides, but Monsanto sure as hell does. Think they’re any more eager to release their stranglehold?
There are more fronts in this battle than you understand, because you are fixated on vaccines. That is fine, vaccines are important, and it’s good that people are passionate about the subject. But it is NOT the whole truth, and WE care about the whole truth, because without the whole truth children will still not be well. And whether or not you realize it, wellness matters a heck of a lot to a lot of people in the autism community.
I did not suggest that the IACC “was the correct forum for asking for studies for other disorders.” I suggested that other disorders are milder versions of the same things, and ALL of those factors go into ALL of them.
I’m done arguing. You have made your point. We didn’t do it your way. And we never will, because your way is not our way. If you want to write yet another post telling us how wrong we are, don’t bother. We won’t approve it.
So you’ve already predetermined that you’re to have the last word here. Censoring my reply won’t make any of your false statements true, including this one:
“The increase in autism is ALSO right in tandem with the increase in pesticides.”
Another fabrication, easily disproven:
You certainly play fast and loose with the facts. This exchange has been an eye-opener for me as I know it will be for other members of the autism community with whom I intend to share it.
Thank you so much Megan Davenhall and Lyn Redwood!
I don’t think it gets any more bone-chillingly clear than what she said. Bravo, well done.
“We have a medical system that is run by pharmaceutical companies who don’t care one bit if our kids are healthy or not.”
Oh, but they do care…they care a lot…they care enough to want our children, and all Americans, somewhere between sick and dead…customers from cradle to grave, for as many years as possible. And they are laughing all the way to the bank, sick and devoid of all morals as that may be.
Megan, WONDERFUL speech! Your words were spot on and your message clear. Please don’t hold your breath, however, for this committee to do what’s needed. These committee members have had more than a decade to take needed and appropriate actions and they haven’t (Lyn Redwood, I am not including you in this group!). Thank you, Megan, for getting yourself to that meeting and speaking on behalf of parents everywhere and our injured children.
How do we contribute to make sure you have financial resources to be every meeting?
Wow, Ed! What a generous gesture! Not sure how we’d do that… Stand by…
Yes! Can you start some sort of donation site? I am a parent to a child with medical autism – and I thank you for doing what so many of us wish we could be doing! I would gladly donate to ensure continued support for this mission!
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That was a wonderful and articulate speech.