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Katie Wright on IACC: "Can You Hear Me Now?"

Deaf ear Managing Editor's note: Katie Wright, Contributing Editor for Age of Autism wrote this piece for SafeMinds. Reprinted with permission.

By Katie Wright

I first read the Interagency Autism Coordinating Committee (IACC) member roster and thought why does the National Institute for Deafness have a seat on an autism research committee? Then again, maybe there was common ground! Maybe Dr. James Battey of the National Institute on Deafness should take over IACC entirely because he is an expert on the hearing impaired, a condition that seems to affect almost every member of IACC.

IACC was created as a direct result of the hard work of thousands of families with autistic children who called, wrote and even visited their congress people and Senators to get the Combating Autism Act (CAA) passed. Parents organized phone campaigns and sit-ins in offices of non-supportive legislators. My parents, Bob and Suzanne Wright, traveled to DC dozens of times to lobby for our families, in efforts to rectify the near total absence of autism research within the NIH. Families everywhere worked tirelessly, and at their own expense, in order to make the CAA law.

Meanwhile, Secretary Leavitt did nothing to help by allowing the National Institute of Mental Health (NIMH) to remain as lead agency in the effort to answer autism’s riddle and leaving its Director Dr. Tom Insel as the IACC’s Chair. As the scientific community’s understanding of this disorder has evolved, it is apparent that autism has biologic underpinnings that are treatable, meaning that our kids are physically ill – not mentally ill. The nod to NIMH as lead agency continues to place a stigmatism on those affected by autism and delays urgent research by promoting the old association of autism as a mental health disorder.

To add insult to injury, the majority of IACC members are federal employees and out number public members by 2 to 1 and used that advantage to out vote public IACC members on key research objectives during the passage of the committee’s first strategic plan. This despite the consensus on many issues voiced by autism organizations and the public during town hall meetings that public IACC members represented in casting their votes. The feds essentially control decisions on how all autism research dollars should be spent in opposition to public IACC members. This is also contrary to the intent of the Combating Autism Act, as the legislative history specifically directed a portion of research dollars be spent on vaccine research.

To top it off, only 2 of the 6 public seats are occupied by representatives from the autism community, despite formal requests to expand the number of public member positions to balance the committee and provide seats for organizations like Autism Speaks, National Autism Association, Generation Rescue and Talk About Curing Autism. To date there has been no answer. As a result almost none of IACC’s actions reflect the critical research priorities of our 2 million families and operates with no sense of urgency.

The only sense of urgency displayed by Dr. Insel appears to come when adjourning meetings early. Sadly this urgency left 3 mothers and their ASD sons who had traveled great distances, in order to offer public comment, without an audience at the pre-scheduled time for their comment.  Undeterred by the negative impact this has on our families, IACC’s website now advises that all meetings could end early, so don’t be surprised if you dial in to hear IACC in session and hear dead air. So much for public input and acknowledging the needs and efforts of the affected struggling to make their voice heard to the committee charged with representing their research interests.

Selective deafness of Insel’s IACC is the most disturbing happenstance. The Combating Autism Act specifically states in section 399c, subsection d, that, (4) “All meetings of the Committee shall be public and shall include appropriate time periods for questions and presentations by the public.” IACC is a federal advisory committee that is charged with taking public input seriously and acting upon the priorities of our families. Instead, IACC “catalogues” all public enquiries and suggestions and puts them into a binder. End of story. When will questions that have been asked receive answers? When will our input as a community be meaningfully integrated? The answer appears to be - when it aligns with the federal pre-approved agenda.

Families are lucky if they are allowed to speak during the tiny public comment portion of an IACC meeting, as comments must be submitted ten days in advance, which does not allow for public comment on the day’s events. While the byzantine manner in which parents are required to obtain approval of their public comment request complies with the letter of the Federal Advisory Committee Act (FACA), it violates the spirit of the act and does not allow for true public participation. That’s right, anyone wanting to make a public comment must submit it prior to the meeting in writing. If a parent doesn’t get their comment in by the deadline set, they don’t get a voice at the IACC’s table. By contrast, public comment at the recent National Vaccine Advisory Committee (NVAC) and the Institute of Medicine (IOM) meetings review of the Centers for Disease Control’s Immunization Safety Office Draft Research Agenda allowed for off the cuff responses from the public. They too are FACA reporting committees. Guess they understand the spirit of FACA, which is to provide transparency and public participation at these types of committee meetings.

Last week during the Senate’s hearing on autism research Senator Tom Harkin repeatedly asked Dr. Insel why IACC will not invest in a comparative study of the unvaccinated and vaccinated populations to investigate differences in total health outcomes. Parents, former Director of NIH Bernadine Healy and nearly every autism organization want this research done. Senator Harkin wants it done and is not alone in terms of the support of other members of the Health and Human Services Committee. Senator Harkin also noted that many parents are choosing not to vaccinate their children at all, and therefore it would be possible to collect data on this population along with how many individuals in unvaccinated families suffer with autism. Dr. Insel’s response was that the vaccine autism research question was closed. When the Senator asked why there has not been research studying the effects of the massive increase in vaccines given to babies under 2, Insel’s response was that it would be a waste of money. When the Senator insisted that this is an important question to answer, given that autism cases have skyrocketed along with the exponential increase in the vaccine schedule, Insel stated that the correlation doesn’t equal causation. Fair point, but given the critical research gaps revealed in the National Vaccine Advisory Committee report - why not just find out? Again, Insel said no way.

Full video of the Senate Appropriations Committee’s, Hearing on Autism Research may be found at the C-Span website, here..

It has become crystal clear that Insel is deaf in terms of hearing anyone outside the small community of people who says the vaccine safety debate has been settled. He has completely ignored the educated position of the autism community; the implications of autism specific research indicated in the NVAC’s report that should be taken up by the IACC; the mandate for vaccine safety research as stated in the Combating Autism Act; and the concerns held by individuals like Bernadine Healy with regard to the weaknesses in science that Insel stands on. With continued rebuffing of requests to expand its public membership component to bring into balance public and federal representation the status quo is likely to continue and give Insel cover in remaining non-responsive to requests from CAA’s major sponsor, Senator Tom Harkin, as well as other members of Congress. In short, Insel appears to be accountable to no one.

Our community deserves better representation and real leadership and to that end, SafeMinds has requested that Secretary Sebelius investigate Dr. Insel’s actions and reinstatement of vaccine objectives that were removed under false premises in January from the IACC’s Strategic Plan.
 

Comments

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Dr. L'Hommedieu

Carrie,

I’m sorry to hear of your son’s affliction. A parent’s love for their child endures and grows even greater in spite of difficult circumstances. That’s the common denominator I see with the parents of these children. They love their child so much they continue to search for answers to recover the child they once knew and who once recognized them. It is persistent and open-minded parents who are able to begin to recover a child which was once thought to be hopelessly lost.

Yes, I have seen how these children can change a family; although painfully, most families can reflect back to recognize it as a blessing in disguise. But another greater blessing is when their child begins to recover. It can be a difficult road and only likely to occur unless matched with unwavering parental persistence and an understanding of the biochemical interferences involved.

It may be unwise to simply dismiss the experiences and diligent research offered by parents on this web site as an over-exaggeration of the dangers of vaccinations; they have done their homework and I can tell you haven’t. The destruction of children’s minds and the resulting consequences to those families induced by adverse reactions to toxic vaccines and grossly excessive vaccination programs are very real. The life-long collateral damage far, far out-weighs any speculative benefits. The chance of dying from or incurring polio, diphtheria or small pox is not even a relevant issue today in this country. In fact, the only polio I have seen in my practice was vaccine-induced. Measles, mumps and rubella are childhood illnesses that build strong life-long immunity once incurred and are important for developing a healthy immune system. Again, the worst case of chicken pox I’m familiar with resulted from a vaccination that was supposed to be preventive.

You may not be into politics, I wasn’t either, but as a doctor determined to understand the cause and treatment of health disorders I have had to recognize that we have arrived at a time where health care, science, politics and business have been deliberately corrupted and thoroughly entwined. Our corrupted mainstream science provides the tools of unrestrained political positioning to ruthlessly create business profits in today’s pharmaceutical industry and mainstream medical health care. But that’s only part of the story.

The reasons behind children developing neurological disorders have nothing to do with any belief preference you may have. You may not believe vaccines are the cause but that doesn’t change reality. I can certainly tell you from professional experience that vaccines are absolutely, without a doubt, a MAJOR contributing factor to ASD and other neurological disorders. Are they the only cause? Not necessarily. Any toxic element, and/or chemical, and/or combination thereof can produce the same symptoms. These toxic substances compromise immune functions, and along with poor nutrition and medications, can lead to severe chronic infections that further burdens an already compromised system (endotoxins/die-off adding to the toxicity level), which then leads to greatly increased uncontrolled damaging effects of those original toxic substances. You may think vaccines had nothing to do with your son’s condition, but that’s logic that defies the basic sciences, which is what the CDC, FDA and AAP specialize in.

I have certainly seen a couple of children that developed neurological disorders / ASD that were never vaccinated, but other toxic chemical exposure factors were involved, which were legitimate environmental causes. Keep in mind; ASD, ADHD, Asperger’s, etc. are not the only symptoms associated with vaccine toxicity. There are the developments of chronic allergies, asthma, skin rashes, constipation, more subtle difficulties in learning and coordination, poor memory, poor eyesight, diabetes, chronic infections, chronic fatigue, dental issues, endocrine issues, aggressive, introverted or overly sensitive personalities, Polycystic Ovarian Disease (in teens), chronic migraines, so-called genetic disorders (such as SMA), and many other symptoms directly related to vaccine toxicity. Vaccines not only influence the health of children; vaccines affect adults alike, only on different levels to different degrees than children to where one thinks it is normal to have certain symptoms because so many people have them.

Sorry to inform you, Carrie, but mercury is not being phased out as much as you would like to believe. The predominantly used vaccines are mercury containing such as flu (are you considering the up-coming flu vaccines?), meningococcal, Haemophilus influenzae B, and tetanus vaccines. So, in a few years the only thing you may realize is the tremendous damage that has been done to this generation of children -- after it’s too late. In addition, the mercury that is removed is substituted with other harmful adjuvants; these are not by any means safe substitutes.

God has a purpose for everything brought into our lives. Maybe He wants to use your experience to prevent this same thing from happening to someone else you know. I don’t know. All I know is that, “Ears that hear and eyes that see, the Lord has made them both.” When He wants you to know certain things He will be sure your eyes and ears will be opened in His timing.

Benedetta Stilwell

Professor Hanna Kirk-like captian Kirk, Neat!;
Yes I breast fed.
But ear infections were the least of my worries, really! The stroke that my son suffered only six hours after his third DPT shot was what really worried me.

Carrie I know it really too late and I don't want you to feel bad. It is not at all anything you could have done. We all just trust authorities too much! But measle, mumps, and chicken pox were not that big a deal growing up. Never thought of anybody dying. (I am sure they did, but we just never heard of it). I did not know that I was trading out whooping cough (that could have been treated with antiboitic after he got up to nine months old anyway) for epilepsy.

12 weeks after my son's stroke, I was in the emergency room for the third time for a grandmal seizure and high fever for my son. I had to drag along was me, my daughter, she just that very same day came down with fever, feeling really bad and I knew it was chicken pox. I knew she was going to down with it because she had been to bible school two weeks earlier and a couple of girls had come down with it then. The little nurse at the emergency room, when I said my daughter had chicken pox, turned and looked fearful at my daughter, and stated she did not think she ever had chicken poxs before. I felt like slapping her several times. NOOOOO, you have had chicken pox, I felt like yelling at her, You have had it. It was just so mild or you were just so young you don't remember it. No body ever got to her age and not ocme in contact with chicken pox. My son came down with chicken pox two weeks later after my daughter came down with it. He had no problems with it, no seizures just regular sick with chicken pox. It was rather nice to treat somebody for a disease I understood.

Hanno W. Kirk, LICSW, PhD

There are some studies on the use of Biofeedback, more specifically Neurofeedback, for autism. Siegfried and Sue Othmer had their autistic son successfully treated with it many years ago. Neurofeedback is currently being used by many therapists, including myself, for autism spectrum related disorders. We use operand conditioning to normalize brain function, and those areas in the brain responsible for interpreting environmental cues, can then develop normally.

Hanno W. Kirk, LICSW, PhD

Benedetta,

Did you breastfeed your son for the first year? Did his ear infection problems start when he went on solid foods?

You might investigate foods that are mucus producing, which can cause chronic ear infections.

I have worked with parents and found that once we eliminated the mucus producing foods or combinations of foods, the ear infections magically disappeared.

It's just one of several things that might be causing this.

Benedetta Stilwell

Carrie,
They just told me on this web site there is such a thing as titers, that tell you if your child has enough immunity towards these diseases. Your baby may not need boosters. It was the booster that did my two kids in. My two had constant ear infections, and strange fevers. It just made me ill. You do not want to give your baby a life long autoimmune disease either.

Carrie

I have to admit, I am not quite into politics. So some of what your are talking about I really have not kept myself current. I am a parent to a newly diagnosed son who just turned 3. I have to admit, I do not see the culprit as being his diet or vaccines. I noticed his decline shortly after he turned 1. The factor that I find as playing a huge role is his hearing. He began getting massive ear infections. Shortly after his second or third one, everything started declining. Beinf a new parent, not knowing that i would have to ask for the intervention for his ears, it took a year to get him relief. 6 months ago he was almost completely non-verbal. Now he seems to be a completely diferent child. I can believe that some kids have had bad vaccines. But i find it hard to belive that they are the only reason that kids are autistic.
They have started fasing mercury out of children vaccinations. In a few years we will know if it really had something to do with it. However, all this does scare me because I dont want parents to stop having there children vacinated. Me personally, I would rather have a son with autism than a son who died of polio, diphtheria, measles, mumps,rubella or small pox. Honestly, I dont think I could love my son any more if there was nothing wrong with him. He could continue to strive and be just fine, or we could struggle. Only God knows, and maybe, just maybe, he knows best. Someone asked me last night if I knew that God gave me him for a reason. I dont know what the reason is, but I am glad that I have him.

Dr. L

Similar to the medical establishment’s enduring pretense of “The Search for The Cure” for cancer, is their sustained call for more redundant misleading research to “discover” the cause autism that supports their agenda. Naturally, all of this research would exclude medically induced causes such as vaccines, toxic metals and related chemicals/drugs. From their perspective a Vaccinated vs Non-Vaccinated study would be a “waste” of money only because if it was carried out by a legitimate research committee, it would be absolutely incriminating to the medical establishment. Yes, that would be a waste. But even if such a study was started in order to pacify parent outcry, which is highly unlikely, you can be sure the results and the committee would be destined to ill fate.

It is very sad to realize that the hard work and effort poured into establishing potentially effective committees, research and legislation by dedicated parents and doctors will always be compromised or hog-tied when leading government officials and health agencies become involved. Your hope will not be working through these agencies, which are intentionally designed to be stumbling blocks for the wee folk.

SafeMinds’ request for Secretary Sebelius to investigate Dr. Insel’s actions will be another interesting show. Consider that Sebelius is a government insider who has attended the Bildeberger meeting, and Obama now has 12 CFR members appointed to high regulatory positions. This is what controls the medical system and research. What happens when they finally ram Obama’s abomination of health care by stealth down our throats? No money for valid vaccine safety research, that’s for sure. Then will come the dismantling of the alternative therapies that are really helping these children. Are most parents really aware of the political agenda they are up against? I don’t believe so.

Dr. L

Similar to the medical establishment’s enduring pretense of “The Search for The Cure” for cancer, is their sustained call for more redundant misleading research to “discover” the cause autism that supports their agenda. Naturally, all of this research would exclude medically induced causes such as vaccines, toxic metals and related chemicals/drugs. From their perspective a Vaccinated vs Non-Vaccinated study would be a “waste” of money only because if it was carried out by a legitimate research committee, it would be absolutely incriminating to the medical establishment. Yes, that would be a waste. But even if such a study was started in order to pacify parent outcry, which is highly unlikely, you can be sure the results and the committee would be destined to ill fate.

It is very sad to realize that the hard work and effort poured into establishing potentially effective committees, research and legislation by dedicated parents and doctors will always be compromised or hog-tied when leading government officials and health agencies become involved. Your hope will not be working through these agencies, which are intentionally designed to be stumbling blocks for the wee folk.

SafeMinds’ request for Secretary Sebelius to investigate Dr. Insel’s actions will be another interesting show. Consider that Sebelius is a government insider who has attended the Bildeberger meeting, and Obama now has 12 CFR members appointed to high regulatory positions. This is what controls the medical system and research. What happens when they finally ram Obama’s abomination of health care by stealth down our throats? No money for valid vaccine safety research, that’s for sure. Then will come the dismantling of the alternative therapies that are really helping these children. Are most parents really aware of the political agenda they are up against? I don’t believe so.

KimberlyPaulson

Thank you Katie, wonderful followup on Insel's hearing with Senator Tom Harkin, Insel is unbeivable, however the "German" political party was also unbeivable as well, so it goes, and I beleive that nothing will change with this man guarding the gates to freedom of information about findings on autism. I am previously from Iowa, and are familar with Senator Harkin, however, I am the single parent of an autistic son, and I "know" that chemicals and genectic problems have caused his lifelong struggle to adapt, I also beleive that the CDC "knows", but their hands are tied by the many politicans who have their pockets lined by the profits from the vaccine manufacturers, and corporate insurance lobbist on an annual basis, and none of these groups are willing to let the public find out what horrible crimes that have been committed against our children by the vaccines themselves.

nhokkanen

Insel Island would be located at around latitude 80, longitude -50. Very remote, very cold.

dszy

I have some comments; I don't understand the factual basis of some of your arguments.

For example,"it is apparent that autism has biologic underpinnings that are treatable, meaning that our kids are physically ill – not mentally ill". Every bodily experience has biologic underpinnings, does it not? What's the problem with the category of mental illness? Autism is identified according to guidelines posted in the DSM-IV, which is the Diagnostic and Statistical Manual of Mental Disorders.

Also, "the nod to NIMH as lead agency continues to place a stigmatism on those affected by autism" . Well "stigmatism"
refers to the way your eye assembles information to send to your brain so it can make an image. I think you probably mean "stigma". While I think it's true that bigotry against people with mental illness is still considered socially acceptable in many quarters, I wonder why you buy into that.

Kevin Barry

Presidental appointees have the ability to replace ineffective people like Insel.

Why have we not heard a peep out of the Obama administration about Insel's lack of results for the past ten years? (I am a Democrat who voted for President Obama if it matters.)

Incompetent

IACC: Incompetent Autism Coordinating Committee.

As a parent, I don't even bother calling in anymore. I would rather work in my own state with my own state representatives.

Sarah

Regarding Insel..if the autism community wants to oust him then I think it'll take a unified lobbying effort among all autism organizations and parents toward members of congress. I worry that Sebellius is part of the medical community machine. I think the Senators are at least are listening

Another strategy is to keep the pressure on the Senators to not accept the IACC's recommendation to not fund further vaccine studies and to go ahead fund them. The more the IACC challenges this the more they'll expose the medical communities true agenda (CTA- Cover Their Asses and surpress the scientific truth).

One things for sure, as long as Insels there, he'll continue to ignore us and tow the company line.. it's so obvious that his political agenda is and probably always has been, to protect the medical profession from liability and maintain the status quo not to advocate for the families.

David Taylor

Thanks, Katie. Grinding teeth so hard that my bicuspids have become flat screen TVs.

Sounds like we need a strategy to remove Insel from this position. He seems to perceive his role as a cork to bottle up and hide from view any information that would move science along when it comes to the etiology and treatment of autism.

Bad Apple

I’ve heard that the late Dr. Bernard Rimland was quoted as having referred to the CAA as the ‘Pretending to Combat Autism Act’.

I first looked into autism in my university library, long before I had any children. It was around about the late seventies, and the only studies that I found that purported to show progress in children with autism were studies on DMG by Dr. Rimland. This was my first encounter with the man’s work. I would later learn that, the father of an autistic boy himself, he would be credited as being one of the first people to dispel the refrigerator mother myth. A decade later , when it was suggested to me that my oldest child might have autism (this by her gastro-intestinal specialist), one of the first things that I did when trying to learn all that I could was to contact Dr. Rimland.

I remember how surprised I was when the receptionist at his research institute asked me if I would like to speak with him directly, on the phone. He was the head of the institute, and had time for me? I’ve since heard that he often spoke with parents. Our conversation wasn’t a long one, but I will never forget the words that he said to me.

We spoke about vitamin B6 and DMG, and I’m pretty sure we also spoke about casein free diets. I was told that something like one third to two thirds of children they were studying were being helped to some degree by the interventions they were suggesting at that time—one third somewhat, one third significantly. Numbers sound familiar?

I wasn’t about to put my child on massive amounts of vitamins however. I had too many concerns that the mainstream medical establishment didn’t advocate doing this. I told him that I was probably going to take the vitamin supplements myself, and put my daughter on a casein free diet. I asked him then why it was that the traditional medical establishment didn’t advocate using high dose vitamin B6. (He’d told me it was safe as long as it was used with a B vitamin complex) I will never for as long as I live forget the words he said to me. Though I didn’t understand them, they sent a chill down my spine. It’s been many years but this is what I remember:

“It almost seems as though they don’t want the cause of autism to be found.”

“Who are ‘they’?” I asked him, and he replied “well there are a lot of people getting government grant money to do research, in fact most of the research money is government funded.”

That was all he said to me. Not a word about vaccines. It scared the living daylights out of me for a while. But then after awhile the chill went away, and I forgot about our conversation for the most part. That sick feeling came back after I read Evidence of Harm, and it hasn’t gone away since.

It got worse and worse as I began speaking on internet political chat rooms and found that I was repeatedly and for longer and longer periods of time banned simply for stating facts about thimerosal. These were rooms, both conservative and liberal leaning, that I’d chatted amiably on for six or eight years with no problems. Then I found that I couldn’t stand on a public sidewalk politely asking people if they’d like information about vaccine safety without being threatened with arrest, and I got even more scared. Finding that my posts were being censored on many of the internet ‘autism support’ forums had me literally terrified. About the only thing that keeps the terror at bay these days is checking out AOA and a few of the other internet forums daily. And most especially seeing a post from you periodically, Katie.

Please, please, PLEASE keep on doing what you’re doing.

I hate to sound too pessimistic but I myself really don’t believe that anything significant is going to change for families dealing with autism until some privately funded research is done into the vaccine issue. If autism funding was transferred out of the NIMH, I still wouldn’t have a great deal of confidence in any studies that were being done. These days I feel that nothing coming out of my government can be trusted.

I was kind of surprised, when looking into the whole tobacco issue, to find that suspicions went back a very, very long time. Or maybe that was lead poisoning from the paints, or the peptic ulcer (being caused by a bacteria rather than simply stress) issue. At any rate it seems that no major changes ever happen in our health care industrial complex until the people who don’t want those changes to take place begin to retire or die.

But keep on doing what you’re doing to help our children. It was good to see that Senator Harkin seemed to show some genuine interest. Perhaps now that the numbers are one in a hundred--and somewhere between one in five hundred children to one in one thousand children, I think, who are severely affected with full blown autism (amazing that in the fifties, with the peak incidence of Polio at one in three thousand and most of those people ended up with no serious long term harm, our government was all in a panic and the sky was about to fall!) --perhaps now people will FINALLY start being held accountable, and something will be done.

It’s not going to happen under Insel’s leadership however.

John Stone

"Insel" is, of course, German for "island".

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