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Katie Wright: IACC Public Members Disappoint

Idil AbdullBy Katie Wright Robison IACC

I was happy when I first heard Ms. Idil Abdul was appointed to IACC.  Abdul is an ASD mom who represents an under served community and brought much needed diversity to the committee. Initially, Idil was a real fighter, working hard to make change and give voice to all in her community. Over time, however, Idil has been active largely only on the wandering issue and cultural inclusion in autism research. Idil often focuses on the need for greater sensitivity training of researchers and better inclusion of the culturally under represented. Those are indeed very important and worthwhile issues. Yet, sadly, when rare opportunities for here and now prevention DO arise, instead of taking action, Idil demurs from controversy.

Skin lightening creams are commonly used by Africans and the Somalis who recently arrived in this country. Skin lightening creams contain mercury, a potent neurotoxin. They are extremely unsafe. These lotions are officially banned in the USA for a reason. The FDA’s minimal safety standards are incredibly low, so to be totally banned = really dangerous.

Mercury causes brain damage. Imagine rubbing mercury all over one’s face. I bet Somalis are unaware of these dangers. I sincerely doubt there are warning signs on these illegal skin lightening product containers. Even a few IACC members were astonished to see the content of these creams and learn they were readily available over the Internet. Idil acknowledged that these very dangerous creams were widely used but, “did not want to get into trouble by talking about it.” Idil, you are there to help your community, not to be liked or avoid controversy. Do the right thing and address this. Speak out Idil and say, “I am going to start a public conversation about the dangers of skin lightening cream NOW.” Don’t looking to the govt to answer every problem, take this opportunity to spearhead critical change.

Rarely do such clear-cut opportunities to prevent autism prevent themselves!

When 12 year old sisters of severely affected ASD boys share their heart with the IACC committee and share their deepest and more painful concerns, the response of an IACC member should never be: “you are wrong and you are looking for something to blame.”

Shame on John Robsion and Idil Abdul. How dare they tell the courageous girls they are “looking for something to blame,” or as Idil said, “well you hear something enough you start to believe it, even if it is not true.”  What a condescending comment. The job of public members is to be respectful of the public – not lecture 12-year-old girls that they are dumb and don’t get it. If John and Idil have nothing constructive to add how about being quiet for a change and allow someone who has something to contribute to speak.

So many faulty and illogical arguments regarding vaccines and autistic regression from John and Idil. Idil said that because she knows of ASD families in which the kids were unvaccinated and developed autism, these sisters are wrong. Apparently Idil “knows” that the brothers of these girls did NOT have an adverse vaccine reactions. Maybe Idil can also explain to my how my son contracted autism, maybe Idil can tell all of us who saw our children have adverse vaccine reactions why we are wrong and how she knows better. I would love to hear it!

Ms. Abdul’s reasoning is absurd. The girls were talking about their brothers, they never said over vaccination is the cause of everyone’s autism. Then Idil offered the hackneyed, “without vaccines people die!” argument.  OK, no one ever died from having a reasonable conversation, so let’s calm down about, “people dying!” For heaven’s sake, Idil and John need to take a course on active listening. The girls Never said they wanted to stop people from vaccinating; only they wanted the NIH to study their brothers and kids who suffered adverse vaccine reactions and regression. Pay attention people.

John said, “The research has been done.” Sure vaccine company research and patent holder research has been done and CDC research has been done and guess what – they all exonerated themselves!  What a surprise! Imagine if in high school we could have all graded our own papers! It would have been all “A”s for me! “Guess what Mom I made Honor Roll after all!”

The girls want independent vaccine research on toddlers who had adverse vaccine reactions and subsequently regressed into autism.  This is not too much to ask.  John you did not experience this, you do not have severe autism. John you do not care for a child with severe and medical autism. Try listening and not judging. The girls did not tell you not to vaccinate, they did not tell you they know how you developed your autism. 

The public members of IACC have been a very mixed bad, to say the least. The next post will address the performance of other IACC public members.

Comments

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Eileen Nicole Simon

"Neurodiversity" was not under consideration when the IACC was formed, under the Children's Health Act of 2000. The IACC was intended to provide an interdisciplinary approach to investigating causes and treatment of the severe problems of children called autistic, according to Kanner's description. Language development remains the greatest concern. Please lookup Kanner's paper Irrelevant and Metaphorical Language (Am J Psychiatry. 1946 Sep;103:242-6).

Neurological impairment is the cause of the communication, social, and repetitive (choreoathetoid) movement disorders described by Kanner. These are not part of a spectrum of delayed normal development.

My son who will be 52 next week suffered head trauma (cephalhematoma) and oxygen insufficiency at birth. I am grateful that he acquired language by age 6, and is "high functioning" (though not quite Asperger's). My son has an auditory processing disorder that continues to impede his understanding of speech. He writes well, but in an oversized handwriting (macrographia). I have not been able to get him to take an interest in computers. I hoped the IACC might be able to get programs started that could help him, including leaning to use a computer.

Where did the idea of neurodiversity come from, and why? What possible insights can you provide? Why should members of the IACC rely on what you have to say, but completely ignore my comments on how the brain might be impaired? I may be totally wrong!!! But shouldn't my long experience and efforts to make sense of my son's handicaps deserve at least as much discussion as the ideas of those who would put an end to brain research?

What are you trying to accomplish? Why are you trying to downplay the seriousness of our children’s disabilities, and the extreme sorrow of their parents?

Barry

First of all, the evidence I have seen suggests that kids ingest lead and mercury from far more sources than medication, and to the extent there is a metal poisoning problem in kids, we need to be looking at those other sources. When I say that I am not saying I support mercury in vaccine; rather I am saying fish and other sources put more mercury in most of us and for those who are sensitive, putting the focus on vaccine draws attention from other real environmental issues.

************

How much more, exactly?

And from what sources , exactly?

And can you also explain how children are being damaged more by environmental exposures, which have to get past their mucosal layer, than they are by injections which completely by pass their natural defences??

And when you answer the previous question, could you tailor it to explain how 40 odd thousand never-vaccinated Homefirst children, who live in the same environment as vaccinated children, have managed to completely avoid autism??

Opinions are like assholes Mr. Robinson, everybody has one. But what this argument needs is fact.

Barry

".... Finally, we have the portion of the population whose autistic behaviors appear naturally
*****************

Really? Where are they?

Jenna

John Elder Robison:

Thank you for commenting. You seem like an exceptionally intelligent individual, and I really enjoyed reading your books. They have given me great insight into how to work more effectively with my son.

I hope that you will reach out to William Thompson, Brian Hooker and/or the Congressional staff of Rep. Posey to understand the recent revelations about a connection between a vaccine and autism discovered in a CDC study, which was then re-engineered to erase the signal. Many are unaware of the fact that this type of conduct occurs with alarming frequency in the scientific world, and certainly not only in vaccine research. I also urge you to read the book "Evidence of Harm", which chronicles similar behavior in studies performed by Thomas Verstraeten. We need a clear- eyed, logical and unbiased person on the IACC to look at this evidence, and I think that person is you.

Thank you for your consideration.

Benedetta

Mr. Robinson:
I guess you just have to witness a child having reactions with in hours after a vaccine -- (3) times for my son -- and for my daughter -- her reactions took weeks --(too many times to count before I figured out what her vaccine reactions looked like) -- for some one that is indoctrinated to really get it.

I was indoctrinated as are you.

Katie Wright

Excellent point Nancy.

That is what I have observed as well. Over the past few years Idil's comments have come to be nearly identical as that of most conservative elements of the CDC.

No more, "listen to Somali mothers," it is now if vaccine safety is discussed Idil says, "people could die of diseases!" Talk about alarmist and tone deaf rhetoric. Also the self-congratulating about "how far they have come," (Idil and the CDC) regarding "their work together."

It is only a shame this "work together" has accomplished nothing to investigate the cause of the explosion of autism among Somalis in Minnesota- basically the reason Idil received an IACC seat in the first place.

In part it must be the need to be liked and accepted by the authorities who gave her these jobs.

nhokkanen

Six years ago the Minnesota Department of Health held an information session for the local Somali community about its high autism rates. The Commissioner circled the bureaucratic wagons and stated condescendingly, "We have facts; you have opinions."

Journalist David Kirby covered the meeting for Age of Autism:
http://www.ageofautism.com/2008/11/somali-parents.html

In another AoA article that I wrote, someone named Idil was quoted saying MMR causes autism, though the last name is spelled differently from Abdul.
http://www.ageofautism.com/2008/11/by-nancy-hokkan.html

"[Idil] Abdallah said parents need to be listened to by their doctors, saying that parents have noted children’s regression after some shots like the MMR. 'It is not helpful when you say no link… please do not disqualify mothers. When doctors say "no link," that may not be the answer.'”

MDH's communications director, an attorney, hovered closely by some of the more vocal thought leaders within the Somali community. In fact, she was seen physically placing herself between them and non-Somali autism activists, like a one-woman PR blockade.

Over time some of those thought leaders have been groomed by MDH staff. Idil was able to form her own autism nonprofit organization. After that the rhetoric of some self-appointed spokespeople flip-flopped to vaccine injury denial. Psychologically it's part Stockholm syndrome, part borderline personality disorder. Or maybe it's as simple as greed.


Katie Wright

Thank you everyone so much for your responses.

I learn a great deal from this conversation.

John Elder Robison deserves a lot for credit for writing a response.

I realize there is a limited amount of money but almost NO money has been used in over 5 yrs to study any vaccine related toxicities or autistic regression. It seems more than reasonable that tho study be funded and executed by objective (NOT CDC people or vaccine patent holders) professionals. The NIH has spent less than 1/10 of 1% on this subject and it matters a great deal to many, many taxpayers. We are not being fairly represented. Our kids matter.

John and Lyn were the only 2 people at IACC to suggest actually doing some research about the skin bleaching creams commonly used by Somalis.

This issue is like a gift! How often do we stumble across such a finding? Here we have a KNOWN trigger of ASD and it is 100% avoidable and avoidable today! No one needs to bleach their skin.

I know something about taking on issues and having people dislike you, but Idil has to either be a big girl or get off the IACC committee. Idil looks to the govt to solve a lot of problems and sometimes it can and it should. However, it is Idil who is best positioned to take on the toxic trigger of face creams in the Somali community. She should be eager to do this, not shirking the opportunity "because people will get mad at her."

Secondly Idil should have pushed for a better Somali study. Idil knows that autism in the Somali population far exceeds the % of autism in the non Somali population. The sorry and very expensive excuse for a research study denying this fact is an embarrassment. I wish Dr. William Thompson could lend us some insight here.

Finally at least John and Idil show up and participate. That is sadly, a lot more than most IACC pub reps. That story will follow.

Eileen Nicole Simon

Cherry Sperlin Misra: Thank you as always for your insights as a nursery school teacher. It was the director of my son Conrad’s nursery school who suggested we have him evaluated for autism, not the pediatrician. You are a “milieu researcher” and front-line observer of what is going on.

John Elder Robison: Epidemiology has been relied upon too much. Neurotoxicology must be the way to look for how environmental factors cause brain damage. Where to look in the brain? What systems are most vulnerable? Lookup Sokoloff’s deoxyglucose method, and research based on this method.

In PubMed lookup: (1) bertoni deoxyglucose lead, (2) vingan deoxyglucose, (3) soman deoxyglucose, (4) scremin soman.

Also lookup: (1) cavanagh harding leigh, (2) cavanagh alpha-chlorohydrin, (3) cavanagh methyl bromide, (4) morgan dl colliculus, (5) oyanagi colliculus, (6) husain k colliculus, (7) asphyxia colliculus, (8) thomson wernicke 1881.

Lookup the seminal paper by Seymour Kety, free online at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804882/?tool=pubmed

These are not “cherry-picked” out-dated articles, but just a few of many I have found over the past 50 years, looking for research relevant to my sons’ developmental language disorders.

Cherry Sperlin Misra

To John Elder Robison, I very much appreciate that you are on your journey to understanding the cause of autism and I hope that you will continue to stay with the truth as you see it, not as the CDC sees it.Please note that the place that you have on the IACC could have been occupied by one of America's leading mercury toxicologists, but it is not. What kind of world is this in which people keep talking about wanting to know things and never calling the real scientists who aleady have a lot of information, and who know where the research money ought to be allocated.
I personally would really really like to meet one of those "naturally occuring cases of autism" . Maybe you could say that my friend had one such child, but then it turned out the mother had dental work during pregnancy and was given rhogamma injections with mercury at the time of birth. I ran my nursery school in India for 22 years without seeing a single case of autism. Then came the years in which we had a few autistic kids who had been vaccinated abroad. Then came the years after the Indian Pediatric Association increased the number of vaccines containing mercury. Autism cases increased and some were severe. Then came the years when Indian pediatricians in Delhi were using imported vaccines, usually with less or no mercury, and the number of cases decreased. And then came the recent years when the Indian govt has brought in a pentavalent vaccine which has resulted in less mercury going into most children. So , That's just fine and dandy- Now we mostly get children with severe speech delays and just a few hints of autism. Gotta be grateful. I mean wasn't that kind of the WHO to work that one out- ONLY speech delay The point I am making here is that with each change of vaccine usage we saw changes in the children in my school. I have stopped keeping close track of how many autistic and mildly affected kids we have seen. It must be around 50-60 since we saw the first cases of autism back in the 90's. Now we have in India, too, a new development- mothers gathering their courage and having a second child with few or no vaccines and the mothers are refusing the tetanus toxoids that are given during pregnancy in India. Yes, they succeed in having a normal child .
So there you have it- Twenty-two years of no autism and twenty years of autism. I personally have never seen a case of naturally occuring autism. I do not think that after millions of years of evolution, the human body is programmed to self destruct. I think that biologists would laugh at that concept. I suppose no one is going to put them on the IACC either, at least not an independent one.

Linda1

John Elder Robison,
The committee you serve on emits an aura of paralysis. Lots of talk, lots of wasteful, useless research, no action, zero results. You say you don't want to focus on any one environmental cause to the exclusion of others and that is evident in the committee's lack of accomplishments. For instance, you acknowledge that pesticides are linked with autism. Fine. What has the committee done with that knowledge? What action has been taken to reduce the public's exposure to pesticides? None. The committee could have selected some members to focus solely on pesticides to determine the best ways to use that information to prevent future cases, setting clear goals and deadlines for ACTION. There could be educational materials distributed at pediatician, obstetrician and FP offices, in hospitals, on the FDA, CDC and NIH websites, at autism advocacy organization websites, in PSA's. Yet the public is still largely unaware of this pervasive hazard and even those that are aware and try to decrease their exposure are still exposed through the use of others in the community. This knowledge should have sparked immediate, emergent coordination by regulating government agencies that should have been tasked with ELIMINATING this cause. Yet, instead, the FDA continues to INCREASE the allowable percentage of pesticide residues on food, and NOTHING HAS BEEN DONE to decrease the over 1 billion pounds of pesticides used in the US alone each year.

You are rationalizing when you say that there are other sources of heavy metals and mercury that are more important than what is injected in vaccines. You are making excuses for looking away from the most direct and invasive exposure. If you are so convinced that mercury in fish is the major culprit, then where is the action aimed at analyzing the relationship between fish consumption and autism? There isn't any. In fact, just the opposite. In June of this year, the federal government advised pregnant women to eat more fish - the kind that are "lower in mercury" - because of the superior proteins and other nutrients. http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm397443.htm
What prompted this advice? Complaints of the fish industry over decreased fish sales.

You are deaf to the confession of one of the CDC's own senior scientists and his statement that mercury in flu shots are neurotoxic during pregnancy and that research done by himself and his colleagues at the CDC was deliberately manipulated to hide an increased risk of autism after the MMR when given to African American babies before 36 months. Thompson says that he believes that the mercury in flu shots given to pregnant women in this country directly causes tics and autism-like features in their children. Can't you hear that? Why are you unable to acknowledge what is before you in plain site and then act appropriately? Thompson's statements obviously cast doubt on the validity of all of the research and recommendations that have come from the CDC.

You share an obstructive mindset with other members of the IACC. You are biased, close-minded and one of many who should be removed from this committee.

flahute

The problem with using the 'lack of research dollars' as an argument for lack of progress on the issue of significantly increased autism rates since 1980 is that there perhaps isn't any simpler explanation than having the due-diligence process derailed by corporate indemnification and government malfeasance.

You can't explain these rates genetically (ie, mutations) and you can't use the criteria angle (ie, we're better at early detection) either.

Frankly, if nothing else- it's a national security issue as increasing numbers of families face the long term financial, emotional and health burden caring for irreparably harmed individuals. This hurts everyone's bottom line(s) on a number of levels.

flahute

@John Robison:
Nice summary- agree on many pts that the toxicant issue is a big one to tackle.

I have to disagree with your current assessment of the Somali rates and basically stand by my previous post.

From the report (U MN funded by CDC:
rates in MN Somali Children- 1/32
rates US nationally 1/88 (sorry hadn't seen this but recalled ~1/60 in Seneff's paper).

Also, MN rates overall seem to be considerably higher than US nationally- perhaps reflective of some important trend. The metal toxicant and pesticide/herbicide explanation angle makes more sense to me (as I've pointed out in other posts) than _only_ vaccination as a driver for autism but perhaps my own scientific bias.

FYI
http://rtc.umn.edu/autism/doc/Somali_Autism_study_press_release.pdf

from the CDC-funded MN study:
http://rtc.umn.edu/autism/

I don't know what the CDC told IACC but sounds like, as I've said, they've mislead not just the IACC group but the public. So, I will respectfully suggest that some due diligence and cultural awareness start being infused into this process.

John Stone

John Elder Robison

You are happy to sit there with Coleen Boyle, Jose Cordero etc (I think not long ago Marshalyn Yeargin-Allsop) and you believe everything they tell you, ignoring the many broken-hearted parents who over the years have paraded before your sneering committee - a contented place man. Even when Bill Thompson breaks ranks and blows the whistle it is like a pebble dropping through water, leaving not even a ripple of concern.

http://www.ageofautism.com/2014/08/cdc-frauds-connections-between-the-destefano-paper-and-the-thorsen-affair.html

WE ARE NOT BEING TOLD THE TRUTH

Jeannette Bishop

@Who Makes Money ...,

I wish my mercury addled brain could come up with the source. It seems like the actual stated case was that amalgam producers were paid to take the mercury off of the hands of whomever had possession.

Eileen Nicole Simon

At the IACC meeting held in January Lyn Redwood asked about the use of skin-bleaching creams (p281 of the transcript), and found via Google that many of them contain mercury. Idil Abdull admitted that many Somali people use these creams, not on their babies, but maybe during pregnancy (p297). This is huge, and I thought this would be something that should be investigated, but I don’t think it has come up again.

In PubMed, put in search terms: “skin bleaching” mercury. Ten articles come up. This should be followed up on, especially because Idil reported at the last meeting that after “vaccine injury” to one child, four or five subsequent unvaccinated siblings sometimes also developed autism.

These creams should be rubbed into the skins of laboratory mice (wearing quadruple or more gloves), then look for changes in the brain. I would look in the brainstem auditory pathway.

John Elder Robison

Katie, I hope you know I have never argued against the toxicity of mercury. I have seen the effects of mercury and lead poisoning, especially in low income kids, and I agree it's not pretty. While it's true that I do not have a child with severe disability we do have some of those kids in our high school program and I do have personal experience of disability far greater than my own. I am keenly aware that I have a responsibility to try and benefit all autistic people, not just the folks at one point or another on the spectrum.

My issue is different. First of all, the evidence I have seen suggests that kids ingest lead and mercury from far more sources than medication, and to the extent there is a metal poisoning problem in kids, we need to be looking at those other sources. When I say that I am not saying I support mercury in vaccine; rather I am saying fish and other sources put more mercury in most of us and for those who are sensitive, putting the focus on vaccine draws attention from other real environmental issues. Unregulated discharge of toxic metals is a huge environmental issue. The stuff gets into the food chain and kills and disables in the animal kingdom and in humans. And it's largely a result of our industrial practices.

When the CDC came to present the Somali autism results they told us that the rate of autism in Somali kids in Milwaukee was actually slightly lower than the rate for white kids. That surprised me, but it's there in the report and at odds with some commentary here. You may take issue with their numbers, but that was what they reported. They did not report an incidence "twice as high." That was the initial speculation which they say was wrong.

I found it interesting that the autism in the Somali kids was far more severe than the autism in other population subgroups in the city. That was one context in which the face cream toxicity was discussed but there had not been any studies of metal levels in those kids or their mothers to perhaps make an association. We discussed the advisability of doing those studies and reporting back.

The next concern that I have, as relates to metal toxicity, is that there is a great deal of evidence to support the idea that there are multiple causes of autistic behavior/disability. To direct the focus on one area - metals - is in my opinion unfair to all the others.

What about the study we discussed last year, which showed a striking correlation between proximity to fields using agricultural pesticides and neurological disorder in children? That was a pretty disturbing connection, one that went well beyond autism. And what about the studies that show a correlation between autism in kids and proximity to an interstate highway and its particulates? That too bears further study.

Finally, we have the portion of the population whose autistic behaviors appear naturally. When you have a naturally occurring condition, there is no "cause" to remediate, but there are therapies and interventions to make life better.

We have a limited amount of money, and I feel it's my duty to advocate for a range of research, not to focus on one thing. You've told me yourself how important research into GI-gut issues is, and I agree. Don't you think we should be pushing for that too?

Just as there is no one answer to "where does autism come from" I think there is no one answer to "how should we allocate our research dollars." I'm well aware that some people disagree with that position, but with all due respect I'd point out that I can ask five people who say "I'm certain what causes autism" and I would get five different answers. And in the end, the cause is not determined by popular vote, it's determined by research.

I do my best to be open to all points of view. I may not be successful, but I try. I spoke up in the last meeting to recognize all of those who wrote in for that reason, and I'll do my best to give people their turns as long as I am there.

John Elder Robison

Benedetta

Thanks Katie: I don't see how you do it. God Bless you for going and reporting about it -- we still need to write down how each meeting went even if

IACC continues to disappoint and nothing is new here.

Wayne Rohde

Katie, thank you for posting. Many of us know the real Idil Abdul and it is not pretty. Having tried to work with her in Minnesota to bring about private insurance coverage for autism and reforming Medicaid/Medicare for autism services, she often resorts to racial slurs. She even went as far as accusing a few state legislators of being color blind with her quote "they are as white as Minnesota rice". Never mind that those legislators were working on private insurance coverage (which she thinks is for white folks only, BUT also reforming Medicaid for allow autism treatments and therapies to be covered. She even verbally attacked members of the Minnesota Autism Task Force (all appointed by the Legislature) of being racists. Because of her constant actions, the legislature now has a bad taste in their mouth about her but also autism in the minority community.
I approached IACC and the Sec of HHS with a letter asking for Idil to be removed from this federal committee because of her actions in the state of Minnesota. It was signed by a couple of state legislators as well. The answer to my request, The Chair of IACC thru a spokesperson, Idil will remain a member for the full term unless she decides to resign.

Who Makes Money off Mercury

@jeannette wow! So they think treating humans as toxic waste dumps is okay. Wow. You just blew my mercury-addled mind ...

Jeannette Bishop

I don't remember the source but I read or heard (possibly an interview of Dr. Haley?) that dental amalgam is actually more expensive in terms of material value than composites, but the mercury is essentially given (or discounted?) to that application which is why it's use has been preferred by insurance, etc. The implication may have been or my impression was that this avoided toxic waste disposal/storage costs.

I wouldn't be surprised if there is little to no direct profit in the mercury mining industries for "healthcare" applications, but I do wonder if there are indirect financial supports for such uses?

Linda1

Tara,
Thank you for sharing. You know your girls were very effective communicators if they will be barred from speaking in the future. I'm sure many were deeply moved by their presentation. I know I was.

Double vaccination "to be sure"

Some adopted children were vaccinated twice "to be sure" they had "really" been vaccinated as records showed from origin country. I met one and she was severely autistic. So tragic.

Who mines the mercury poisoning our children

Can anyone tell me who makes money selling the mercury used in thimerasol and in amalgams and in vaccines? Who mines it? Where does it originate? Who profits selling it? I think that we have to expose that industry as well and that perhaps that industry is behind some of these vicious attacks and some of the media control because they are trying to suppress our testimonies at all costs. I have tried to find the answer to these questions and they are buried:

Mercury in all forms Hurts

I have often wondered if Michael Jackson was a victim of mercury poisoning. We watched him get stranger and stranger. And he suffered effects such as difficulty sleeping among so many others consistent with mercury. He had a condition that affected his skin color and may have made him want to use creams like this. Now I can see how that could be plausible.

Carolyn

Ms. Idil Abdul also had the opportunity to question the study done in MN that did not include vaccinated vs unvaccinated children of Somali decent that had autism. It would be a perfect population to study considering timelines on vaccinations for both children and parents, especially since immigrants are subjected to multiple vaccinations upon entering the country.
It would have been, and still is the perfect population to study in a sense, especially if that is the reason she has a seat on the committee. If not she doesn't belong there.

Neither does a blogger nor a best selling author who doesn't seem to get it.

JMHO

Linda1

"Offit, Insel, CDC must love Idil."

Surely she was interviewed and chosen for the performance she is now giving.

tara

We left soon after John started replying and saying they have looked into vaccines.
We applied to talk again, and I received an email telling me my girls could no longer speak. They have changed the rules. No one under 18 can speak. No one from the same family.

Son In Recovery

Part of my letter for public comment I sent to the IACC today:

I am concerned about the recent public statement of Dr. William Thompson and the fact that the CDC has manipulated study data. The 2004 study entitled "Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta” has been referenced/cited in 344 studies. This study affects an entire body of work. All of these studies should now be re-evaluated. I demand that the IACC appeal for a vaccinated vs. un-vaccinated study by and an independent party not related to the CDC or drug companies. In addition, the lack of lack of representation of the autism community, especially parents, on the IACC is laughable. What actions have you taken over the last few years except for yet another genetic study that has been fruitless? Real action and leadership is needed now! We are quickly becoming “America the Disabled” and I beseech the IACC to open your eyes and get to work helping families in America.

The IACC is a joke and I have no real hope it will ever change.

autism mom


Is the IACC even relevant anymore? Not in my opinion given the current "leadership" and representation. Altogether IACC is a very disconnected board serving their own agendas whatever those may be.

Twyla

Interesting about the mercury cream. Could be one reason why there is a high rate of adverse vaccine reactions among this group. Too bad the govt won't investigate and act on the mercury issue. They can't admit a mercury-autism link because that would erode their defense of thimerosal.

lol - "they all exonerated themselves! What a surprise! Imagine if in high school we could have all graded our own papers!" That's a good one!

I hope those two 12-year-old sisters know that they are so appreciated for speaking, even if their reception there wasn't so appreciative.

The "I know unvaccinated people with autism" argument drives me crazy. It appears to be based on the assumption that there can only be one cause of autism, so if one person's autism wasn't caused by vaccines nobody's was.

Barry, there are actually three alternatives: tell people to vaccinate, tell people not to vaccinate, or simply tell one's own story without trying to decide for other people what are the best choices for them.

As always, Katie, thank you so much for attending these frustrating meetings, representing families, and reporting back on what is going on.

no-vac

After vaccinations people die in developed countries (see VAERS), but practically nobody dies because they were not vaccinated (EU statistics). Ms. Abdul is ignorant and should keep her mouth shut.

Truthseeker 2

Offit, Insel, CDC must love Idil.

flahute

Maybe I'm missing something: Since the rate of ASD/Autism (A/ASD) in Somali kids (in the US) is ~2X higher than US A/ASD average, a significant increased risk regarding MMR & persons of color developing A/ASD was recently (re)identified, _and_ it turns out that CDC manipulated/suppressed their original findings regarding this issue; doesn't the Somali group somewhat provide a real time confirmation of these suppressed findings and undeniably validate Hooker's paper?

That is the take home message at the moment- that needs to be made abundantly clear to the IACC/CDC in some type of public comment.

MnMomma

Thank you for sharing your thoughts Katie.....as horribly sad as it is, I actually find it refreshing to know that others see and unfortunately deal with this. Idil is from my state and when not in DC for IACC spends her time at our state Capitol spewing forth the same rhetoric. No matter what legislation we put forth, it's always somehow racially discriminating (in her opinion). She usually spreads the same message but she also talks out both sides of her mouth when one on one. She absolutely does not do any justice for her community and it's heartbreaking to see as we have always tried to include everyone in our efforts.
IACC needs revamped obviously....maybe Idil will work her "magic" and cause the entire committee to fall apart and disband like she did to our state autism task force. We can only hope!

Jill Fenech

Katie - Again, thank you for going to this meeting and reporting back to us. I could never do what you do. The frustration, the ridiculous same old, same old false claims that "vaccines are safe for everyone, every day, every minute, no matter what,"the blatant refusal to see the forest for the trees...there goes my blood pressure! I would never be able to make it through one of these meetings without losing it. All that time and money wasted. Those poor girls who spoke at this meeting. Boy, they sure got a big spoonful of "I'm from the government and I'm here to NOT help you." These people are supposed to advocate for our young adults (my daughter is now 21!!!), our children and our families affected by "autism." How can they possibly believe they are doing their jobs? Do they really think that "vaccines are safe" is going to stay under the radar forever? C'mon Congressman Posey! I just sent my letter describing our descent into autism to his office and also to the office of our Michigan representative. Everyone needs to speak out. I am reminded of Horton Hears a Who. It took that one extra voice for everyone to finally "hear" the voices on that small dust speck. MAKE SOME NOISE PEOPLE!

Carolyn

Today is the final day for Written Public Comment submission for the Sept. 23rd IACC meeting. I would urge all parents, especially those who have submitted "Hear this well" videos, to send a written comment to the IACC with the link to your videos. If you have concerns about the make up of the committee, and lack of representation of the autism community, especially parents, please do so. Also those with concerns over the CDC Whistleblower exposure of CDC fraud, please also do so and please indicate your public written comments can be used for public viewing. Also look at the agenda for this meeting on co-occurring and address the lack of biomedical or functional and complementary medicine representation. Thank you. http://iacc.hhs.gov/events/2014/co-occurring-conditions-workshop-announcement-sept23.shtml

flahute

Feeling a bit cranky today & thinking that this story could have been better framed to provide more context.
The blatant cultural insensitivity and scientific incuriousity on the part of IACC folks are disturbing.

A little background information- rate of ASD/autism in SOmali kids is 1/28 or roughly 2x the 'current' US national average. The thing that struck me with a bit of background reading was the absurd dysfunctionality and apparent obfuscation on the part of CDC and MN DPH folks.
AoA 2009 link:
http://www.ageofautism.com/2009/03/autism-the-scourge-of-the-21st-century-somali-immigrants-in-minneapolis-and-autism-epidemic-or-stati.html

ASD in immigrants possibly due to chemical exposure / dietary changes
AoA 2008 link: http://www.ageofautism.com/2008/11/minnesota-and-t.html

Barry

The girls Never said they wanted to stop people from vaccinating; only they wanted the NIH to study their brothers and kids who suffered adverse vaccine reactions and regression. Pay attention people.

************************

So what the hell is wrong with girls who watched their siblings get injured by vaccines, telling people that they shouldn't vaccinate their children???

The alternative is to watch you siblings get poisoned, know damn well that it could happen to any other child…. and STIll tell people that they should line their kids up for the same vaccine poisoning.

Wouldn't THAT be the irresponsible to do?? Especially when you consider that there is no proof whatsoever that vaccines are safe or effective?

beth johnson

Katie, you are performing a significant public service with your IACC watchdog actions. This article is especially useful.

BoB Moffitt

"Idil said that because she knows of ASD families in which the kids were unvaccinated and developed autism, these sisters are wrong."

How many families with "unvaccinated" ASD kids does she know?

As I understand it .. the "legal" immigrants from Somalia were routinely administered vaccines upon their arrival in the U.S. I seriously doubt she means to suggest that a significant number of the Somalia immigrants she "knows" .. entered the country without receiving vaccinations?

From the reports I have read .. the recent influx of children entering our country by the thousands are being diagnosed with a host of various diseases that are far less common in the U.S. Are they being vaccinated as were the Somali children?

Isn't that exactly why Ellis Island existed in the "good old days" when we welcomed the "poor huddle masses yearning to be free"?

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