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Katie Wright on the IACC: An Autism Mom Goes to Washington

A mother's protectionManaging Editor's Note: Katie Wright has written extensively on the Interagency Autism Coordinating Committee.  You can read her posts HERE..

By Katie Wright

You know how watching something on TV is never quite the same as the real thing? I’ve been listening to IACC meetings for 2 years and wanted to see this committee in action. My Mom and I also wanted to attend IACC in order to support the five families affected by autism who would be addressing the committee. Very rarely does IACC hear from parents of severely autistic children.

Dr. Insel started off the meeting apologizing to Lyn Redwood for Dr. Landis’ note. The apology was overdue and should also have been coming from Story Landis, but Redwood graciously accepted. The room was absolutely packed with autism families. My Mom and I were in awe of their abilities to get through the onerous NIH security check points and be at the meeting on time. Meanwhile at least 4 IACC committee members were absent. It seems to me that if a parent traveling alone with a severely autistic child can get to this meeting on time, so should IACC members. Even Insel pointedly remarked to the group that many, many people would like to sit on this committee and all members need to make a better effort to be present and on time.

As if on cue, federal members Dr. Jennifer Johnson and Dr. Lark Huang strolled in 45 minutes late holding coffee and snacks. Apparently, they were in no hurry.

Then, at long last, parents told the story of their child’s descent into autism. Elizabeth Emken was there with her handsome 17 yr old son, Alex. Elizabeth spoke about how loved Alex is and how grateful their family is for Alex’s good health and general happiness. However, Alex is severely disabled. He cannot communicate with more than a few words at a time, he cannot live independently, he will not get married or have a family and Elizabeth, like all of us, worries about what will happen when she is gone.

Judy Chinitz spoke bravely about her son, also Alex, and his nightmarish descent into regressive autism and concurrent onset of severe bowel disease. Judy spoke about spending years caring for her son as he endured a decade of bloody diarrhea, extreme pain, chronic illness and the inability to sleep. Alex was taken from doctor to doctor; no pediatric GI knew how to help Alex and most dismissed him as “just autistic.” Out of desperation Judy enrolled in a graduate school nutrition course after reading Elaine Gottschall’s “Breaking the Vicious Cycle.”  By the time Alex was eleven his health stabilized as a result of the SCD diet, but sadly Alex remained profoundly autistic. Moms like Judy wonder how different their children might be had they had the benefit of the sound medical intervention their children desperately needed.

This was the very first time in 2 years that IACC committee members, largely non autism experts and non parents heard from a parent of an autistic child with gut disease. Judy’s story was truly wrenching. Alex’s journey was so much difficult than even my son’s. The reaction of the committee was silence and apparent discomfort.

After the end of parent presentations not one committee member had a question for Judy, not one. Dr. Yvette Janvier of Toms’ River, NJ, has insisted that GI issues do not exist among ASD kids and she was “offended” by Lyn Redwood’s assertions that these children have not been receiving adequate medical help. Well here was Dr. Janvier’s big opportunity to learn about kids like Alex, ask his Mom some questions and exhibit some compassion and humility. But no, Dr. Janvier sat there like a stone.

During the break, at least Tom Insel approached Judy to thank her for coming, but not one other member of the committee spoke with Judy or Alex.  That is the whole IACC committee in a nutshell: most are not parents, most are not autism experts, largely uninvested in our children and do not want to learn from our families. They want ugliness of autism to just go away. I want that too, but wishing doesn’t make it so.

These courageous Moms had spoken about so many issues IACC never discusses, subjects that are of grave importance to so many families. It was the perfect opportunity to delve into a discussion of co-morbid issues like GI disease, autoimmune dysfunction, adverse vaccine reactions, dietary interventions, seizure disorders, etc. But no, guess what? The next hour and a half presentation was about ABA! IACC had engaged an ABA expert to basically explain this methodology to the committee. I know! The ONE autism topic that doesn’t need IACC’s attention.  IACC is charged with causation research. How about spending an hour and a half on the cause of GI disease, seizures, regressions, or adverse vaccine reactions? ABA is already widely accepted, is extensively utilized and exhaustively well researched. If committee members do not know what ABA is; a) that is really embarrassing and b) they should educate themselves about autism basics on their own time and not waste ours. Imagine a cutting edge dermatology conference on skin cancer presenting a panel on sunscreen: good or bad?

Maybe it because of the dry academic tone of this ABA lecture, but the committee really came alive during this presentation. There was question after question! Clearly it was the first time many of the committee members were learning about ABA. After 2 long years, this committee of autism experts is just now learning about ABA? So disappointing and distressing. IACC is no Manhattan Project, that’s for sure.

Where is the discussion on cutting edge science? During the public comment period it took a mom to speak about the new development regarding chronic fatigue syndrome and the recent finding that nearly all CF patients are infected with the same virus. For decades chronic fatigue had been incorrectly classified as a psychiatric disorder and now we know it has a true biological basis. The implications for treatment are exciting and unprecedented. This discovery opens a whole new window into disorders like autism, in which a substantial % of individuals with ASD suffer from acute autoimmune dysfunctions and chronic illnesses.

When I couldn’t listen to the ABA lecture another minute I went into the hallway to call home. I suddenly realized how thirsty I was and reached for a bottled water on a snack table. Just as I untwisted the cap I saw the sign, “FOOD AND BEVERAGES FOR COMMITTEE MEMBERS ONLY.” I instantly felt terribly guilty and debated whether or not to put the water back. I had already opened the bottle, what should I do…But then I thought- wait, this is insane! “food and beverages for committee members only?” Who the hell is paying for all of this anyway? Not the committee, but you, me and every American taxpayer. Does anything say, “Welcome Public!” like a sign basically telling families don’t eat our food and don’t drink our water? Classic IACC.

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half.  Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Comments

Steve Kossor

Let's not forget that every state is desperately trying to conceal the fact that Medicaid is available to fund the treatment of children with Autism in their homes, schools and communities -- as a Civil Right under the Social Security Act. In 36 states, Medicaid funding is available regardless of family income. Federal authorities know what the states are supposed to be doing with Federal Medicaid EPSDT funding, but it will take agrieved parents to bring their child's plight to the attention of state Medicaid authorities in Federal court to get justice done and funding in place. State "autism equity" laws actually forfeit Civil Rights in exchange for the right to demand payment for services from private insurance companies. They are a dream come true for state Medicaid authorities, that's all, because they force some children with autism off the Medicaid eligibility rolls.

More information is available at www.ibc-pa.org

maggie

Can't someone look the nonbelieving doctors in the eye and ask them directly and publicly.... Why are you so willing to cast these sick children aside without examining them? The neurological labels these children get are preventing medical assessments... Accuse these doctors of negligence. Why won't one of the autism lawyers start a class action suit agains these doctors for negligence?

Judy Chinitz

Hi all,
I didn't say that Dr. Insel was going to do something about it! I simply said that he went out of his way to be courteous to me - and that he is most certainly NOT ignorant. He knew about the GI issues, he knew the major GI doctors and spoke very highly of Tim Buie (even offering to make a personal call to him if I needed him for Alex), he knew about the immune issues, he even knew a little about some of the unorthodox treatments I am trying (including helminths).

Whether or not he's going to actually take some action, I obviously have no idea. I don't have high hopes. Believe me, no one is more cynical than me. But if we don't have SOME hope, we may as well all give up now.

My thinking was that in presenting my obviously extremely sick son in a balanced and professional manner, I might open their eyes just a tiny bit more. I believe that if I had appeared to be a extremist, the members would simply have become more defensive and tuned out even more.

I don't think I did badly. I managed to get in the colitis, the immune dysregulation (diagnosed by one of the NIH's own), and the kids' responses to diet and anti-inflammatory treatments (both natural and pharmaceutical). I even slipped in the fact that one of Alex's major regressions was the direct result of the flu vaccine.

maggie

Can't someone do what we have had to do with our peds???? someone who is going needs to take an ice chest and pack some ripe poop samples to place next to the food and beverage table that Katie was talking about

IACC meeting info and link for Monica

Monica - here is the link for the schedule www.iacc.hhs.gov

The next meeting is Nov. 10.

Monica

Does anyone know when these meetings are planned or announced? Are they open to the public or invitation only? Would really like to attend with my 9 1/2 year old severely physically ill autistic child. Appreciate comments/info.

HeidiN

Katie: You are such an inspiration. I love your fighting spirit and perfect way of describing things, just the right balance of frankness, truthfullness, irony, insightfullness, and eloquance. I just might go to a meeting myself. Do you think they would let me speak? I recovered five children, one adopted. I learned a few things. But after listening to a couple of meetings online, I was not very optimistic that they are open-minded to learn from me. I was very dismayed at their closed-mindedness. Thus, I don't have hopes that their research will bring about a halt to this epidemic. I will keep my hopes on the private sector, which taught me how to recover my children. And I freely share my knowledge throughout this Internet for others to learn. Our word-of-mouth system is working great!

John Stone

We can all see that Judy Chinitz feels constrained to acknowledge the courtesy that she was extended by Insel - we will still need to see whether there are any favourable consequences before attributing any wider significance to it.

The IACC have let us all down (including us on the other side of the Atlantic awaiting developments), now let's see if they can do anything if they try - which manifestly they haven't been till now.

Allison

Watching all of the parents and children with ASD get up and speak was amazing and this kind of reminder of what the IACC's job is supposed to be about is paramount. Every meeting should have at least one rep from different areas of the autism community speak and be heard. Hello?? You need to know what autism is in order to distribute the funding properly!

I too was BORED to tears with the dry ABA lecture! I mean ABA is important, but it has nothing to do with causation. Do we really need more money put into ABA studies in order for people to believe it's helpful and pay for it??? Is it going to take another 30 years, like it has with ABA, before we have medical breakthroughs and research on the medical aspects of autism and will we still be trying to prove it then?? With Cause/treatments/current research/etc the committee is in the dark. The committee that is supposed to know more than the rest of the country sadly knows less??? This is beyond frustrating.

Maria

Dr. Thomas Insel's salary for 2008 was $285,000. Check it out here:

http://php.app.com/fed_employees/results.php?name=thomas+insel&agency_name=%25&job_title=%25&statename=%25&countyname=%25&Submit=Search

Dr. Yvette Janvier's salary as a member of IACC for 2008 was $52,172. Check it out here:

http://php.app.com/fed_employees/results.php?name=yvette+janvier&agency_name=%25&job_title=%25&statename=%25&countyname=%25&Submit=Search

It's a waste of taxpayers money to pay out these big salaries to these members of IACC who can't seem to accomplish anything to help this autism epidemic. If these people had a job working at a corporation, they would have been fired for non-performance. Why does our federal government continue to pay out big salaries for unqualified federal employees?

MVC

Judy Chinitz writes that Dr. Insel "get's it" and "seems interested?" Wow. When are parents going to wake up and realize Insel and the others could give a flying crap about our kids. So sad to see she fell for this baloney.

To Jean M Brooks

It is believed by many that if vaccines were removed of known neurotoxins, carcinogens, etc - 25% of all medical procedures would be eliminated. The rates of autism, allergies, asthma, diabetes, ADD, ADHD, alzheimer's, certain cancers, cardiomyopathy would eventually reduce dramatically if the toxins were removed, especially mercury which is - don't ever let anyone forget or gloss over the fact that it is - the second most toxic substance known to man.

The people in charge figured out a way to create chronic illnesses from which they and other people could profit from over a long period of time. This was brought about by the tripling of mercury, aluminum, formaldehye, etc. laden vaccines in 1989.

The health improvements resulting from the removal of toxins would strip a lot of doctors and organizations of a lot of income. Think about the loss of business Children's Hospitals would suffer. It is an interconnected racket, fueled in large part by the AAP. Pediatricians must vaccinate or they don't get malpractice insurance. They must order X amount of vaccines Y year or they can't get X number next year, etc. Pharmaceutical companies would lose billions in profits, and politicians would lose millions in campaign contributions from them. It is all about money. Lots of money. And then you have to figure in losses from lawsuits.

The business of continuing to put toxins in vaccines is a profit-driven crime against humanity. The people who could stop it are too drunk on money - which is the root of evil. Some people kill for money. Some people mame children and families for money. And some people try to make the carnage seem to be no big deal or coincidental or like it's always been around, or like it's something that should be celebrated.

We cannot EVER be lulled into complacency. This is a massive cover-up and the insulting comments, the intimidation tactics, the attemts at guilt trips are all part of it. Some people are willing participants and some people are duped into it - like the parents who really believe that parents who do not vaccinate their children are a threat to other children.

Whoopie Goldberg said that Jenny McCarthy scared people into not vaccinating their children for fear of getting autism. WRONG.

See?

Jenny made parents aware that some of the ingredients in vaccines cause autism - a vaccine induced neurological disorder that causes multi-system damage - as well as other chronic illnesses.

The blame lies squarely on the pharmaceutical companies and their enablers, whose profits are more important than the people who are damaged from vaccines. They really think they can drown our voices out and gloss over what they have done and continue to do. It is very important ($$$$$) that they do just that.

Judy Chinitz

Katie, thanks so much for giving me that opportunity to talk.

I knew little of the committee members before attending, except Lyn Redwood of course. I walked away feeling more positive than I could have imagined.Dr. Insel actually gets it. He was interested, courteous and even kind. His take - children like my Alex have an as-yet-poorly understood autoimmune process. I agree. I had the opportunity to ask him - well, beg him, I suppose - to do what he could for children like my son.

I can only hope that somehow, some day we (you, me, Alex, Christian) will make a difference.

Lin

Bless you Katie and all that you do.

Jenna Smith

Hi, anyone have phone contact info for the no-shows and late-shows? I think they need to hear from us.

maggie

Katie, why don't you take out a bill board like Polly Tommy did and demand a visit with Obama... The other thing is...
At these meetings, I just don't understand why parents who have an opportunity to speak,,, don't just come right out and say all that you are saying on this board. Is it not allowed??? Can they not ask them why they don't visit sick children with bowel disease to learn from it? Can they not say........ "Why don't you be like Lady Di and offer to visit the sickly and hear their needs? I believe sometimes the problem is that the fact that they are allowed to sit there and say nothing... When will someone yell at them? where is the outrage? I'm not blaming the parents who are allowed in.... I just don't understand why no one is in there yelling at the morons in charge. If I could, I would

claudine Liss

I always blame the person at the helm. Insel should resign. He obviously has no control over this committee. If this is how they conduct themselves in public, God only knows what is going on behind the scenes. I do not have a doubt that millions and millions of tax payer dollars are being flushed down the toilet.

Maurine Meleck

Thanks Katie for attending and giving us the info. When you wrote about the committee's huge interest in ABA my first thought was that they showed the interest in an effort to steer away from anything remotely related to vaccines, environment and our kids being so physically sick.

Jean M Brooks

I am mystified by the lethargy of the IACC committee members. Does anyone in the Age of Autism readership have any theories about how this came to pass, that a committee charged to deal with a massive public health crisis (as well as a tragedy for a world of families) would be without any sense of urgency or curiosity? Why do the members agree to be on the committee? There can't really be any personal or professional benefit to participating. Why isn't the committee filled with people who are eager, curious, concerned? It just doesn't make any sense. Any ideas?

Ginger Taylor

For those of you who would like to watch the video of the meeting, you can find it at:

http://videocast.nih.gov/Summary.asp?File=15381

Teresa Conrick

Thank you, Katie for attending and reporting back to us! What a narcissistic and inappropriate group this is - uncaring- unhelpful- uncompassionate - uneducated, ignorant, biased, perpetually rude.....I could go on just based on tardiness and segregated snacks.

If seeing all of our posts does not change any of their behavior - like they don't all of a sudden change because they have been "caught", then this is more than lazy bureaucrats.

Richard

the most depressing words to hear "I am from a government sponsored and tax payer funded committee and I am here to help"

bensmyson

I remember seeing a rally of people, all called together on a moments notice and yet each of them wore red t-shirts. There was no mistaking the number of people there to rally. When the news media came to capture visuals of the event, it was a sea of red. It was unity.

Katie this ABA business conducted by the IACC during a time that should have been more of the Rub Their Nose In It moments tells me this is nothing more than a stroll along the Autism Mall window shopping. No intention to buy.

Coffee and snacks in hand, this is their red shirt, their representational visual to us all. It really is outrageous.

Theodore M. Van Oosbree

If Dr. Paul Offitt qualifies as an expert on autism then surely these knowledgable folks deserve a spot on the IAAC.

Henderson

Katie - Thank you, your mother and Lyn Redwood so much for attending this meeting and keeping us to date.

I don't even know how you sat there with those people (the IACC, minus Lyn and whoever else I don't know about who can listen reasonably).

Oh look, the Benedict Arnold, ALISON TEPPER SINGER is on the IACC committee. Blech! Maybe, she doesn't know about ABA. Maybe she learned something.
http://iacc.hhs.gov/about/member-roster.shtml

Oh and for anyone out there who doesn't know this: Ms. Benedict Arnold Tepper is on the board at the Autism Treatment Foundation (Alison Tepper Singer/Paul A. Offit, MD/Karen Margulis London/Michael Lewis. Double Blech.
http://www.autismsciencefoundation.org/leadership.html

Read this guys...
http://www.autismsciencefoundation.org/autismscience.html

From the above link:
ASF funds research in accordance with the the federal Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, published in January 2009. ASF President Alison Singer serves as member of the IACC, and as a member of the IACC subcommittee on strategic plan oversight and implementation. ASF Scientific Advisory Board members Dr. Cathy Lord, Dr. Matt State, Dr. Manny Bloom and Dr. Eric London all participated as scientific experts in NIH workshops that were advisory to the strategic plan.

Oh goody.

Their stance on vaccines:
http://www.autismsciencefoundation.org/autismandvaccines.html

No conflict of interests there. Blech, Blech, Blech.

Kristina

Is it really true NECC makes parents sign contracts to not use GF/CF or biomed? What the hell business is it of theirs how the parents feed their kids and treat them medically?

nhokkanen

Thanks, Katie, for another revealing report. And I think that Lisa @ TACA has the right idea regarding true committee qualifications.

The "members only" water smacks of attrition tactics rather than a budgetary consideration. Or maybe it's just someone too lazy to wheel a damn cart. Completely unacceptable, either way.

Lisa @ TACA

Sorry - forgot another thing: when did Insel decide to care? I am actually shocked he acted in the manner described in the article. Sounds like a little clean up from his embarrassing leadership.

Lisa @ TACA

I have an idea for the IACC committee members. How about some requirements for their partipation in such an important effort for the future of our kids?

Lisa's rules for IACC members include:
1) Must spend a week with a family that has a child on the spectrum. Live with them. We have plenty of volunteers who will gladly host them, feed them and sign any disclaimer.
2) Must read the AAP standards of care on autism and refer to related research (where ABA is prominently displayed. So are other things such as diets and gastro intestinal referrals for those in need, etc.)
3) Must attend a clinic for one week where one to one intervention is provided and shadow clinicians providing therapy.
4) Must attend the number of scheduled IACC meetings on time and ready (barring personal emergencies such as death.)
5) Must attend a minimum of two support group meetings per year where parents of affected children attend and want their feedback (you know like our president does across the country on issues pertaining to our nation!)
6) Sadly, they must actually care to help... hard to quantify but it is a wish. Many of these members just seem to be passing time.

Katie - the years of hearing, watching and reading these accounts are horrific. I appreciate you beyond words for being a part of the proceedings. I am also deeply grateful and love Lyn Redwood. Thank you both.

Lastly, I am so fed up, frustrated and watch this process with utter disgust. What does the number of kids affected by autism need to be for them to actually care? I'd rather spend my times helping families help their kids. These people don't deserve anything but severe criticism and to be reassigned to other cushy government positions. We need to move on without them.

Deb O.

I was able to listen to most of the meeting up until the lunch break and the latter part of the meeting when the committee discussed ad nauseum about re-wording mission statements and bullet points. I found myself frustrated by the lack of urgency in IACC members. To them it is another SSDD meeting. They seemed ill prepared and disinterested, especially when faced with parents and children speaking before them.

Thank you, Katie, for sitting through a day which must have raised your blood pressure a few notches. We are all blessed to have you there to represent us.

Judy Converse MPH RD LD

Many, many thanks to Katie & parents attending. Though I've been up to my eyeballs in autism since the late 90s, it still shocks me that you endured such disdain from the Committee. Children in my caseload who are NT and have Crohn's are in severe physical pain and anguish, with GI inflammation. Imagine all the suffering for non verbal children with autism w/ GI pain, disease, and inflammation who don't get care, don't get scoped, don't get treatment - they get ABA instead. This is sheer brutality. These children are wearing (and breaking) helmets to protect themselves from the self injurious behavior they resort to, to cope with the pain. Makes me weak in the knees to hear of this bizarre, inhuman, non-response from IACC members. Thank you for casting daylight on events of this meeting and the inexplicable neglect imposed on the autism community by the Committee. Astounding.

frosty pitcher-full

Thank you, Katie.

Hmmm, ABA. What a strange little detour that is in itself. Which ABA "camp" can we suppose that the NIMH/Insel/IACC will support? The cool, open minded modern therapists who support vaccine safety research and respect biomed or the ABA Nazis at places like NECC who dole out allergenic junk food rewards and psych drugs, make parents sign contracts to never use GF/CF or biomed, use restraint and seclusion and, when their methods fail, route the kids off to places like the Judge Rotenberg "shock" Center? I'm thinking maybe that Insel/NIMH/IACC is going to be more prone to feature the views of the Kool-Aid school of ABA. I'm even concerned that any dabbling by IACC and its embedded powers that be will only strengthen the anti-biomed propaganda that national ABA organizations are already dishing out.

At best ABA works almost as excellent rehab therapy, similar to "rewiring" therapy stroke victims receive when they've lost an enormous number of faculties. At worst it's a nonscientific cult and, fact is, Skinner has some really silly theories of human development that have been overturned many times. I find the practitioners who are too religious about Skinner's views tend to be, well, a little on the stupid side.

What mostly makes up for some of Skinnner's silliness is that, in the right hands, ABA can address the problem of damage to the area of the brain responsible for motivation, particularly social motivation to communicate.

To my family, the "right hands" are ABA practitioners who are also open to environmental cause of autism. We find the two views work together optimally to get the best out of our kids without ignoring the fact that they may on any given day be in pain from physical cause or have had recent toxic exposures which could be worsening their performance. Understanding of biomed takes the potential cruelty out of ABA (the insistance on using illegal food "rewards" that make our kids sick; that view of our kids as performing monkeys who only use expressions of pain and distress to manipulate, etc.-- all the things that parents who've had bad experiences with ABA complain about).

Presently pharma has poked its moneyed little finger of influence into many of the ABA organizations and therapists at ABA conferences across the counry are now receiving anti-biomed brainwashing. How some ABA practitioners can refuse to look into vaccine (environmental, after all) cause or consider the effectiveness of biomed but yet entertain the idea that psych drugs can "complement" therapy is beyond my ability to understand. I guess with enough Kool-Aid, people are capable of simultaneously entertaining two mutually exclusive ideas all the time.

Garbo

Thank you, thank you, thank you for all you are doing. Thank you for sitting through this meeting. I was really curious to know what the parents had said, and I'm glad to know that they were there to tell "our" truth. At least it's a crack in the door, and I'm glad that the committee members were uncomfortable. I do wonder how long this had been in the works and how these parents were selected. Was this a response to the pressure on Insel or to the Story Landis situation? I wonder what would happen if we really organized pressure to get the committee members to host presentations from the DAN conference. It's depressing that they're so behind the times that they're excited about ABA, but it makes sense. If all they're interested in is convincing the public that autism's been here all along and that there's no known medical cause, then ABA fits right into their repertoire. Chelation, inflamatory cytokines, mitochondrial dysfunction, glutathione depletion, GERD, GI disease, ADEM and iatrogenic food allergies, not so much.

David Taylor

Sounds like the meeting's focus on ABA provided psychological relief and intellectual validation to people who are deeply conflicted and deep in denial.

As someone has pointed out, ABA has its place in a recovery and treatment program, but without addressing the underlying bio-medical issues, ABA is a dead end, just like the APA, CDC and the other three-letter bureaucracies that betray us every day.

AnaB

To these people our children do not matter -they are simply an inconvenient truth. Yeah, IACC are Autism experts, just as the Amer. Acad. of Peds reps who get on TV and talk as if were Autism experts, when in fact, Pediatricians do not treat Autism!

Autism mom

It seems to me that these IACC members are just going through the motions. I find it very hard to believe that they are truly committed to finding out the cause for, and wanting to stop autism.

Given these sole two objectives the IACC was supposedly set up for (was it?), the discussion of ABA has no place in it. It is upto the committee head to determine the agenda and ensure that the discussion remains on the topic at hand. Inability to do that should make for the committee head's replacement.

Col

They don't even know they should be ashamed. Has anyone mailed them all copies of this... or do you think they google themselves?

IACC doesn't care about us

Thank you Katie to you and your family for your advocacy for all of us and exposing IACC for what they really are- incompetent and uncaring. I have listened to many meetings where they sometimes took an hour to discuss logistics or the need for more meetings or more people that had to be consulted, and finally I stopped listening...it is too painful and I have better things to do with my time...like take care of my son. Our biggest problem is that our voice is not being heard because we ourselves are part of various autism groups which all have different philosophies and beliefs as to what caused our children's autism and how to treat it.. How do we unite into one voice and show our numbers? Is it possible? Is it possible that someday we won't be living underground to heal our children and biomedical intervention will be mainstream? That "someday" keeps me moving forward...day by day recovering my child. I don't have time to wait on the IACC to tell me what caused my child's autism or what could possibly help him. While I am not disputing the value of ABA, you are right--that is yesterday's intervention. Many of our kids are medically ill and ABA can help behaviors but not underlying neuro-immune dysfunction. I don't have a three inch binder of abnormal lab results over the past 5 years to have IACC tell me there is nothing wrong with my son. Maybe I should bring that binder and my loud and disruptive son to the next IACC meeting for them to see the face of autism. But it sounds like they don't care.

Renee Tag

"IACC is charged with causation research"

sigh!

ABA was never, and will never be something I would consider. I've witnessed this technique and it turned my stomach. It's backwards, you've got to heal the body so the brain can work.

Another great update Katie.

Kathy Blanco

Oh God...this is just another illustration how throw away our kids are. Once injured, who cares? No one. Not even your family. I am so sick of peo;le deciding for you and me what they think about our situation. I am so sick of pseudo feign concern from these over paid beaurocrats. I think it's time to give them what they truly don't want. Our untrust, our inability to "be workable"...this routine is not working...the nice presentations, the lovely accompianment of our children to these meetings, the charts the graphs...it's time we hit them where they don't want to be hit, their pocketbooks. Request Obama to never fund autism research because it is all so pointless... because the kind of "research" they want is the ones that don't implicate why this is happening. Let's all boycott vaccines...ask our sympathizers to do the same...and see where that goes heh? They will be like pit bulls, but we are like pussy cats...I am sorry, but this is only resulting with MORE vacicnes on the schedule and come see come saw attitudes.

Anne McElroy Dachel

Katie,

I have to ask myself if these committee member feel any embarrassment over their behavior.
How do they look at these severely autistic, vaccine-damaged children and not admit that they're failing them?
I never thought our medical system would ever so blatantly turn its back on a generation of sick kids.
They have no answers. They're not willing to look, The IACC is a complete failure. It's amazing that they keep on meeting. Maybe next time they could do an hour and a half on using social stories with autistic kids,
Anne Dachel
Media

Kari Buxton

Katie,
You are an inspiration to me and s source of strength. Thank you for attending the meeting yesterday and giving us a bird's eye view of the proceedings. Your expertly crafted letter with those visual images of Dr. Janvier sitting there like stone,was very moving. Go Katie!

Maggie

To this day, every story I hear about children and autism makes me cry. A couple of years ago at a school board meeting, several parents told their stories about their child's autism. I couldn't stop myself from crying at EVERY story. But, the school board members shuffled papers, answered their cells phones and typed on their computers and did not react at all. Are these bureacrats not human? How can such human suffering not invoke any response. It seems the IACC reacted the same way. We are doomed as a society.

Benedetta

Thanks Katie for going to this meeting, for sitting through it, and then telling us the real (yes real things that went on in this meeting). You can not get the flavor of the meeting through the telephone. So your work, Katie, is very important and I am so glad you have the talent to look around and pick up on attitudes!

The mood is ugly in my whole community out here!
Cap and trade has made a lot of people around me afraid! I have seen people aggravated before, but I have never seen people afraid.
If Cap and trade goes through it will cost an extra 75 dollars for each beef cow, and 180 dollars for each dairy Cream and beef main things on the Atkins and Ketogenic diet for epileptics and --- I have extended this to mean mitochondria/inflammation disorder too. I think the medical community has confused a lot of us on what a healthy diet is?????

Glad to know we are paying not only their salaries to sit around and do nothing, not think, not learn, not ask important questions. Glad to know we are paying good health insurance and pension benifits to them.
Glad to know we even pay for their snacks.
Meanwhile I always paid for lots of school supplies for my students in school because I feel like it is important.
It really is amazing how we the citizens have let those in Washington live so LARGE on us.

cmo

Katie,

Thank you again for your efforts, the unprofessional scope and quality of the IACC is rather obvious.

A better name for this group might be the Interagency Arrogant Corruption Committee.

4bobby

Thank you, Katie for attending and keeping us all informed about this sham of a committee.

kathleen

Discomfort? I can't help but laugh at that today. Our lovely neice/God-daughter stayed with us last night. Our security system is not working and I stayed up all night worried that she could get out without notice. We live near a large cave system with random sink holes that open into the system. That is discomfort....what a worthless group to be representing our families. No important questions, just blank stares. HOW did we ever get to a place where the truly uninterested are responsible for such important issues as that future of our loved ones...and they DON'T CARE!!

Step up IACC

Tom Insel, I hope you have learned something that will affect you profoundly from these recent IACC meetings.

The subject of autism and treatments and research needs to include causation (not just genetics) and treatments.

IACC needs to be full of committed members and include a priority focus on what the family members are telling about the biological, medical complexities.

Thank you Katie and other families who attended these important meetings. Your words and presence are important.

Holly M.

Thank you Katie and Katie's mom and all other families and speakers for attending. I wonder what the committe would think if Katie's dad, Bob and his followers show up for the next meeting. That was powerful at the Trenton insurance hearing. PS I liked meeting your dad.

Bob Moffitt

Katie....I want to thank you and your mom for taking the time and making the effort to attend this IACC meeting.

Our family greatly appreciates your attendance...considering...if not for you..we would know NOTHING of the shameless, indifferent, uninformed individuals.. who occupy seats on this critical committee.

Please do not get discouraged...YOU are making a difference!!!!

claudine Liss

"Meanwhile at least 4 IACC committee members were absent. "

OUTRAGEOUS, MY TAX DOLLARS PAY FOR THIS AND THESE IDIOTS DO NOT SHOW UP FOR MEETINGS!!!!! THEY SHOULD BE DISMISSED AND REPLACED NOW! What the hell is going on!!

"As if on cue, federal members Dr. Jennifer Johnson and Dr. Lark Huang strolled in 45 minutes late holding coffee and snacks. Apparently, they were in no hurry. "

OUTRAGEOUS, AGAIN, MY TAX DOLLARS PAYING FOR THIS, TOTALLY UNPROFESSIONAL, TOTALLY UNACCEPTABLE. THIS COMMITTEE IS A JOKE! THEY CAN'T EVEN ACT LIKE THEY CARE! RESIGN, PLEASE RESIGN. PUT PEOPLE THERE WHO WANT TO BE THERE, PEOPLE WHO CARE!!!

"The reaction of the committee was silence and apparent discomfort."

NOT SURPRISING, THESE IDIOTS STILL BELIEVE THAT THE WORLD IS FLAT. DINOSAURS, ALL OF THEM.

"FOOD AND BEVERAGES FOR COMMITTEE MEMBERS ONLY.” I instantly felt terribly guilty and debated whether or not to put the water back. I had already opened the bottle, what should I do…But then I thought- wait, this is insane! “food and beverages for committee members only?” Who the hell is paying for all of this anyway? Not the committee, but you, me and every American taxpayer. "

SO MUCH FOR MANNERS, I EXPECT THIS FROM THIS GROUP OF MORONS. WHAT REALLY GETS ME IS THAT MY TAX DOLLARS ARE BUYING THESE IDIOTS SNACKS.

PATHETIC, TOTALLY PATHETIC. AS ANGRY AS I AM, I AM DEEPLY SADDENED. THIS IS ANOTHER EXAMPLE OF OUR CRUMBLING NATION. WHEN OUR MOST PRECIOUS ASSETS ARE THROWN TO THE SIDE WHAT IS LEFT? HOW WAS THIS COMMITTE NOT BROUGHT TO THEIR KNEES, STORY AFTER STORY OF MISERY AND ILLNESS--WHAT IS IT GOING TO TAKE?

Katie,

Thank you for shining a light on yet another example of government incompetence. I am not surprised by it, it just hurts because the stakes are so high.


Claudine Liss, Esq.

Alison Davis

Mrs. Mom Goes to Washington!!! Sadly, I have temporarily stopped listening to the meetings, as I am fed up with the sound quality and grow weary of emailing the tech person who, admittedly, tries to fix the problem.

But the apparent impasse on discussing many crucial issues of autism is what's really maddening. All IACC members need to consistently show up on time or lose their seat at the table. Clearly, the public should be fully represented, which is not what's happening now. All research as directed by Congress needs to be investigated and initiated.

If these items keep being held at bay or ignored, perhaps Congress needs to hold some oversight over the IACC and a change in leadership should occur. Some federal seats need to be replaced by those who are knowledgeable about autism.

We have no time in this epidemic to educate those who are supposed to be directing our research and putting a national plan into place for our loved ones. The children swept up in this tsunami are growing older and so are we who currently care for them. More and more children are being identified as affected by this all-pervasive affliction. Time is growing short; the IACC must stop being the broken cog in the machine.

Angela

"The reaction of the committee was silence and apparent discomfort."

Though they apparently didn't care to learn much, I'm glad they were uncomfortable.

And Katie - I wish you had taken every bottle of water and piece of food and either put it in your purse or thrown it in the trash.

The nerve of these bureaucrats denying WATER to people who sat through their sham meeting all day (for which they were paid!).

The 2010 and 2012 elections are right around the corner and I am taking notes.

Lisa Thompson

Nothing like a little visual communication to slap the hands of us autism parents looking to feed at the public trough.

Obviously the IACC needs to protect their precious refreshments from greedy autism families who in addition to seeking huge pay outs in vaccine court, schlepp their disabled kids across the country to indulge in free food and beverages!

UNBELIEVABLE!!!!

Tanners Dad

The more I think about the meeting, I am glad I was not there and my phone was cutting in & Out. Although, frustrating at the time it gave me time to reflect & not boil over. I am not sure how you could sit through an entire day of very little forward movement. God Bless the families that spoke & all families dealing with Autism. Thanks for being our point person Katie.

Natasa

IACC is just getting more and more disgusting.

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