A Mother Delivers When the IACC Fails
Age of Autism on The Interagency Autism Coordinating Committee

The (Not) Combating Autism Act in Action

Paper soldier By Katie Wright

This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the CAA bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.

Today The Interagency Autism Coordinating Committee is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science. Only Lyn Redwood, who has an encyclopedic knowledge of autism research, of NAA and SafeMinds is representing my child and the hundreds of thousands like him. Only Lyn comprehends the tremendous medical challenges facing our children and urges IACC to fund research that reflects a sense of urgency and purpose.

Most of the bureaucratic committee members could not make a decision about how to get out of paper bag. The talking and talking in circles, the requesting for the creation “blue ribbon panels”, more subcommittees and more outside opinion, goes on forever. Why didn’t Tom Insel just appoint autism experts to this autism committee in the first place? Why are committee members constantly struggling to understand the basics of autism science and looking to others to inform them how to make decisions? They wait and wait and wait to make decisions. Insel wants to wait for more subcommittees, wait for more expert opinion, wait for a new administration, wait until the next meeting- wait to grow old? The only thing IACC is in a hurry to do is adjourn! Then when IACC finally does make an important decision, such as to fund 2% of CAA monies on vaccine safety research, Insel hastily undoes that vote after the meeting.

The public members include Lyn Redwood, who represents 100,000s of families, as well as Lee Grossman of ASA and Stephen Shore, who represent organizations serving people with autism. An ASD Mom, Christine, was appointed because she is Insel’s neighbor. Christine seems like a perfectly nice person but represents no national autism organization and has no scientific background. And finally, Alison Singer. Singer, as you may remember, absconded with AS’s IACC seat and now runs a mysterious autism org in her basement. This bizarre org is led by Paul Offit and a handful of autism ancient history researchers. Don’t our families deserve better than this? Don’t our kids deserve REAL representation from established autism organizations?

Where are our families’ voices? Where is AS’s seat? Where is NAA’s seat? Where is Generation Rescue’s seat? Where is TACA’s seat? All these organizations are legitimate, professional 501c3 nonprofits, they have funded tremendous research, aided families and represent hundreds of thousands of our children yet they have been purposely excluded by Insel’s IACC.

At the last meeting Insel and Della Hamm rushed through the agenda as if the building was on fire. In the process they canceled scheduled appearances of 3 Moms and their seriously affected autistic children in order in order to end the meeting 2 hours early.  One gets the impression that Hamm and Insel have more important places to be. Cutting out early and getting home ahead of schedule seems to be priority #1.

Please check out the IACC website and take a look at the next agenda schedule. At the bottom of the agenda is a warning that IACC will possibly end early (again) so if you tune in via telephone or computer don’t be surprised if you hear dead air.  Again. What? These people should be working day and night on autism, not treating these meetings as some kind of tedious inconvenience to be dealt with as quickly as possible.

If IACC is such a burdensome responsibility for the bureaucrats I suggest that they lighten their load and step aside. There are so many brilliant minds who would work flat out 24 hours a day in order to spend this money wisely. Lisa Ackerman, Wendy Fournier, Peter Bell, Elizabeth Emken, Theresa Wrangham, Jane Johnson, Mark Blaxill, Stan Kurtz, Sallie Bernard, Becky Widen, Jon Poling, Teri Poling, Rebecca Estepp, Vicky Debold, Laura Bono,  Scott Bono, Barbara Loe Fisher…I could go on forever. These people are ALL parents of affected children, leaders of large, legitimate, autism organizations and experts in autism science. These advocates would make IACC their top priority. There would be absolutely no canceling meetings or ending early. Any one of these parent advocates would view serving our community as an honor, rather than a chore.

Katie Wright is Contributing Editor for Age of Autism.

Comments

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Benedetta Stilwell

Well said Cherry!

Cherry Sperlin Misra

To Evan, Sorry buddy, the job description for solving the autism problem , in todays world does not include being a nice person who does ABA. It does include having heard of the terms, methylation, sulphation,mitochondria, glutathione and porphyrins and having some clue as to how we are going to research the utter disaster of physiology which lies beneath the skin of an autistic child. The United States is not short of scientists who are capable of research but someone has to give them funds to do it and fast. No one dislikes Christine as a person but you have to understand that this is called Fiddling while Rome Burns. Everyday autistic children are suffering and sometimes dying ;to ignore them is despicable. We need scientists - who do real science, not junk science and we need them right now. Are you aware that already a decade or more has passed ? A nation that can put people on the moon is still stuck on ABA and Early Diagnosis for children whose bodies are barely functioning and the parents have the lab tests to prove it. And these people have the nerve to take our tax dollars and virtually jettison them into the sea? The need of the hour is to turn our backs on those who choose to ignore the suffering of the helpless.

Nicole Boyd

I am doing research for a meeting with several Senators. What has this money from the Combatting Autism Bill to date gone to study?

Katie Wright

Evan, I am sure Christine is a great Mom and would be amazing on the services committee but I have listened to every IACC meeting and Christine almost never speaks. She does not seem comfortable with the scientific discussions- maybe because her child to healthy (I hope so). We desperately need to parents on IACC who understand the complex science behind all the research so they may advocate for our kids. ALL of us supervise ABA, speech, OT in our homes, assembly materials, meet with specialists (I do every week) and raise money for our kids schools. Our community needs independentIACC members who are not Insel's neighbors and are advocates with experience within the broader community- not only in their home or school.

I do not undertsand why anyone would disagree with that.

Benedetta Stilwell

Well I just got an email from IACC asking me what I wanted researched. What should I ask for? Did anyone else get that email?

Alison Macneil

Would Christine be willing to talk to 'us' AoA about her experience of being on the IACC? Could we get to know her, hear her perspective, share ours, create a bridge of some sort? Maybe she could represent some of the needs of Autism parents better with more of our support and info? I'm an ABA fan, we need a lot more than that at my house, but it's a big part of what we do behaviorally. At this point I feel we ASD parents are so under-represented perhaps we could strengthen her position. Am I ridiculously naive? We share so many commonalities in daily struggles with her. Can we help her and can she help us? I'm willing.

Stagmom

Evan, Katie's verbiage did not appear to be a personal attack, in fact, it's quite polite, "Christine, was appointed because she is Insel’s neighbor. Christine seems like a perfectly nice person but represents no national autism organization and has no scientific background."

Here's her bio: Christine McKee, J.D., has developed and manages an in-home therapy for her autistic child, creating and/or assembling all of the therapy related materials. Ms. McKee participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.

In short, she's an ABA mom, who runs therapy programs in her home, as so many autism parents do. Perhaps she's the best ABA mom in the world, but her bio is hardly substantive for this committee.

Kim

Raymond Gallup


Dear Lenny Schafer:

Thank you very much for that letter by the late Dr. Bernie Rimland on the CAA. It is the first time I have seen that and I'm glad he expressed in writing what I have felt about the NIH, CDC, CAA, IACC, etc. I loved the man as did lots of parents who knew him. When I went to the NIH in September 1997 to get funding for autism research for Dr. Singh and Dr. Oleske, I was surprised to see him there too pushing for autism research.

Unfortunately and sadly, both Dr. Rimland and I realized that getting funding from the NIH or the CDC for real autism research would be a futile effort. The reason I'm sure why he wrote that letter about the CAA.
I have written a lot about not wasting efforts on funding the NIH and CDC ad nauseam
and know that parents and autism organizations will continue to do it.

My suggestion is that all the autism organizations/parents should get together and fund their own research. Forget the NIH, CDC, IACC, CAA, etc. If anything, once autism organizations/parents decide to do this then there should be an effort to cut autism funding by the NIH and CDC since the research they will fund will lead to a dead end. Even today, there has been no autism research by the NIH or CDC of any consequence. No one can prove me wrong.

You want real autism research!!!!
Then only parents and autism organizations can do it.....not any Federal agency. Doesn't matter if Democrats or Republicans are in control. The NIH and CDC will not fund any real autism research linking vaccines unless they come up with bogus research to disprove a link between autism and vaccines.

To do otherwise than what I suggest, is only wasting time and banging your head against a cement wall. It is better to spend time with your families than wasting time on efforts that will NEVER succeed.

Evan Baylinson

I just saw this article and was disappointed with the personal attack on Christine. I personally know Christine. Her child and mine were in the same autism classroom. She is a wonderful Mom and a great advocate for autism. I thought that the committee wanted diversity, diversity meaning not everyone is from the scientific community, diversity meaning a parent of a child with autism dealing with the issues on a daily basis, diversity meaning someone who had no preconceptions. I think Christine is perfect for this position. I am sure you would agree if you met and discussed this issue with her also.

Cynthia Cournoyer

I have to agree with the prophetic statements of Dr. Rimland. People ask, "what can we do?" I suggest that education must consume all our energies. Make AofA stronger and bigger. Start new organizations with the same like-mindedness. Find more pockets of unvaccinated populations as in Southern Oregon (receiving national attention as of late). Show the disappearance of autism in populations that opt not to receive vaccines. Show "them" over and over. I read the powers that be would like to see flu vaccination as high as 83% this fall. I will be the first to stand up and proudly announce I am one of the 17%!
Cynthia Cournoyer
http://www.whataboutimmunizations.com/

Lenny Schafer

The (Pretending to) Combat Autism Act

Months before he died, Bernard Rimland of the Autism Research Institute made this prophecy about the CAA and the research that would result from it.
Reprinted from the SAR, Jul 5, 2006.

The (Pretending to) Combat Autism Act
[From the Schafer Autism Report.]

By Bernard Rimland
Dr. Bernard Rimland is the founder and director of the Autism Research Institute

I strongly oppose endorsing "The (Pretending to) Combat Autism Act" unless it includes clear and explicit language supporting meaningful research on the role of vaccines and mercury as plausible causes of the autism epidemic.

The proposed Combating Autism legislation is as sincerely dedicated to combating autism as O.J. Simpson was to finding the "real killers" of his ex-wife Nicole. The fear that failure to pass the CAA will lead to a catastrophic failure to fund future autism research vastly overestimates the value of government funded research. Most such research is only of academic interest, which gathers dust on library shelves and advances the "publish or perish" aspirations of academic researchers. Is there any evidence whatever that more than a miniscule percent of government funded research has produced any positive and useful benefits for autistic children and their families, or ever will?

If you are aware of any examples showing such research is serving a truly useful purpose, please let me know. I was the first to announce the "autism epidemic", in 1995, and I pointed out in that article that excessive vaccines were a plausible cause of the epidemic. As you know, an enormous amount of clinical laboratory research (as opposed to epidemiological research), has been accumulated since that time, supporting my position. (I did not know then that the vaccines contained mercury, although I had been collecting data since 1967 from the mothers of autistic children, on any dental work they may have had during their pregnancy.) The evidence is now overwhelming, despite the misinformation from the Centers for Disease Control and Prevention, the American Academy of Pediatrics and the Institute of Medicine.

Real progress has been made in bringing recovery to autistic children by physicians and researchers who attend the autism/vaccine/mercury connection. A few million dollars, appropriately directed, has accomplished, and will continue to accomplish much more than the tens of millions of dollars directed along paths intended to exonerate the vaccine manufacturers, the CDC, the IOM and the AAP. I hope our consortium will purchase, or at least threaten to purchase ads in USA Today an elsewhere saying "Defeat the (Pretend to) Combat Autism Act". We should insist that significant resources be directed at exploiting the treatments that we know work, such as special diets, food supplements and chelation. We have a great deal to gain and nothing to lose by speaking out loudly against this sham legislation which would, in the long run, be harmful rather than beneficial to our children.

Lindy Smith

Thank you Katie!! I appreciate all you have done for us parents, keep fighting along with us!
J.B., here here Amen!

michael framson

The outrage that everyone feels only grows daily, by every biased, uninterested press or media report, by the constant bombardment of sloppy research with conflicts of interest, by the gross failure of health reform to leave children with ASD out in the cold and on and on.

Reading AoA at times, can be tough on the spirit. Too many bumps in the road.

Where's "The Godfather" when you really need one? One who could make Tom Insel/Allison Singer, et al an offer they can't refuse........Leave or you will be forced out.

Everybody knows that autism and the numbers of children affected, should have turned over the applecart, the wheels should have come off the trolley by now. Mercury, adjuvants, environmental toxins, and the whole vaccine schedule should have brought down industry, AAP, CDC, FDA, etc. The whole kit and caboodle is at stake and "they" know it. The IACC, as currently directed, is functioning as an impediment to the action that is needed. This behavior is either deliberate, strategic, or gross malfeasance.

So what's the choir to do? Sing louder! Change the rules. Make them come to you. And if they won't come, then its time for the Godfather.

Shannon Hunt

AMEN!!!!!!!!!!!!!!

Heidi R

Don't hold back Katie, tell us how you really feel. You, as always, are spot on. Please tell us how we can change the IACC to something useful. Thanks for all you do!

Garbo

If there's any karmic justice, Insel and all his bureaucratic cohorts will spend their eternities down below, roasting over flames like the bunch of rotisserie chickens they are. I wish we could see their comeuppance would happen in this lifetime, though. I always wonder, where the heck are the whistle blowers? You know there are people out there who are fully aware. What's needed is an autism version of the Pentagon Papers.

Heidi N

I think the bottom line is that the members did not seem to have knowledge in autism. The few that did were out-numbered in voting the issues. Thus, the majority did not represent autism-specific issues, but rather they represented research perspectives from thier governmental regulating viewpoint.

Whomever picked the members set the whole thing up for failure from the beginning. What about having at least one member someone successful at reversing autism? I have recovered five, one adopted. What about having some doctors there that have recovered children from autism? I surely would think that successful individuals could offer some hopeful solutions. After all, one would have had to have learned something to be successful at such a challenging feat.

I listened to the first two meetings and was so disheartened at the antagonism towards research on possible causes and treatments, that I lost faith that there they would be much good coming out of it. I was very impressed with Lyn Redwood though. She was fantastic! Lyn Redwood speaks for me!

Alison Macneil

Mom4truth...let's do something. I am becoming exhausted stifling my rage in terms of how much we Autism parents are underestimated. My experience of the Autism parent community is that we are a really smart, funny, hard working, brave group of people. The powers that govern Autism treatment in this country have no sense of our massive numbers, how much scientific information we pour through, how dogged our tenacity to pursue healing and justice and safety for our children. I know we are all stretched beyond capacity just managing the day in day out of Autism. And our fear, grief and anger also, I would add.But, I had a really uncomfortable thought this morning for about the fiftieth time; I was absorbed on Autism lists on the computer and Nick was sprawled on the couch verbally stimming away.Another perfect opportunity for a little floortime or engagement and I'm blowing it on the computer. I guess I'm feeling today like that's the bad guys winning. We Autism parents all tied up talking to each other (granted the sharing of hope, bio med treatment, etc is priceless) but it really keeps us out of their way. I'm feeling a real need for us to be louder, to be seen and heard. It's getting to the point in my community that even the parent's of non-affected kids are starting to ask "when is anyone going to anything about Autism?" It's like this is a crisis to everyone except the people charged with solving it. I find Tom Insel's inertia inexcusable. Another mother wrote sometime back that she was a "lead, follow or get out of the way" kind of mom and I completely relate to that. My God, Tom Insel, if you can't tolerate a meeting about Autism for even just it's scheduled length (let alone they should be working 24-7,this is an EMERGENCY, for land sakes!) then get out of the way. We cannot allow ourselves to be underestimated. We need to become louder and more visible, a little less polite, and a little more inconvenient.Otherwise I predict Tom Insel, and all of the other ineffective leaders in the Autism world we have been stuck with, will continue just playing down the clock.It's their best defense.Tom Insel knows there is something wrong with the vaccine schedule. This is his strategy. We are letting them get away with it.Anyone else feeling a little less than polite?

Benedetta Stilwell

Ann I have an extra pair of knitting needles when the time comes!

Teresa Conrick

"If IACC is such a burdensome responsibility for the bureaucrats I suggest that they lighten their load and step aside"

Great idea, Katie. How does this happen? Do these people get paid or is it just an "honor" for them to put it on their resume? What is their motivation? Can we seek their resignation?

It seems that to actually look into autism research -- causation and treaments become married. The gene people would like to forever say you are born with this...then the medications can be made to attempt to alleviate symptoms, though this has shown not to be effective and sometimes dangerous. We all know that the symptoms our kids experience, from sensory overload to Strep in their stool, headaches, allergies, bloating, constipation, diarrhea, spinning, perseveration of speech (echolalia) and also movement (OCD) and all the many others, are tied up in their individual chemistries which are all so similar.

To actually look into what is causing those symptoms would lead one down the non-genetic road but rather into a detour of a new land where "autism" has biological, chemical, metabolic, mitochondrial, gastrointestinal, immunological, and neurological issues. One only has to look at lab reports and see all that is wrong with a child who has an autism diagnosis.

Could it be that the lazy and ineffective people are actually stumbling on purpose? Is there a reason that they would not want to look into the cause(s) and cure(s) of autism? If so, "combating autism" takes on a whole new meaning.

JB Handley

Where is the pressure and outrage from Autism Speaks? Why does the largest autism organization in the world have no public opinion on the joke the IACC has become, even as a former employee absconded with their seat? It boggles my mind that Katie Wright has to be the one to call bullshit on the joke the IACC has become, while Autism Speaks appears to be hiding in the shadows. Katie, thanks for being you. If your parents had founded Autism Speaks with the goal of staffing it with people who embodied your spirit, we'd be a hell of a lot further along right now. Best, JB

Anne Dachel

Ahhh Katie, I went to the website for the IACC to see what they say they're doing. http://iacc.hhs.gov/

I found:
"The Interagency Autism Coordinating Committee (IACC) has been established in accordance with the Combating Autism Act of 2006."

Really? 2006? That was three years ago and they're still so disorganized.

Under "Strategic Plan for Autism Spectrum Disorder Research," we read,
"Two decades ago, autism was a little known, uncommon disorder. Today, with prevalence estimates increasing at an alarming pace, autism is emerging as a national health emergency. Autism is now recognized as a group of syndromes denoted as autism spectrum disorder (ASD). The most recent Centers for Disease Control and Prevention (CDC) prevalence estimates of ASD for children are 6.7 per 1,000 (1 in 150) (CDC, 2007). These estimates, more than ten-fold higher than two decades ago, raise several urgent questions: Why has there been such an increase in prevalence? What can be done to reverse this alarming trend? How can we improve the outcomes of people already affected, including youth and adults?"

It seems the IACC believes the prevalence of autism is increasing and at "an alarming pace"? They call autism "a national health emergency"?

Incredible. I have never seen any federal agency, most notably the CDC, use words like "alarming" and "emergency" in the same sentence with autism. And I can't imagine how much the IACC will ever accomplish considering that the CDC is part of this committee. The strongest language the CDC has ever used about autism is "serious health care concern."

The IACC also talks about "environmental factors" but...if you read through the endless paragraphs on research you'll find that the IACC agrees with the CDC on the absence of a link to vaccines......

"Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the
research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system,
or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do
not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale
study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD."

The IACC also reports, "Some people with ASD also have a range of medical conditions
including, but not limited to: motor and sensory impairments, seizures, immunological and metabolic abnormalities, sleep problems, and gastrointestinal symptoms." GI symptoms? Recent research has disproved that, so they'll have to remove that point. The IACC isn't willing to look at vaccines, yet they announced, "It is imperative that resources be devoted to research commensurate with the public health need. Specifically, we need research that deepens our understanding of ASD, including the complex genetic and environmental factors that play a role in its causation.

"Driven by both the sense of urgency and a spirit of collaboration, The Interagency Autism Coordinating Committee (IACC) has been established in accordance with the Combating Autism Act of 2006 (P.L. 109-416)."

It seems that the IACC is dedicated to autism busy work. IF THEY REALLY BELIEVED THAT AUTISM IS A "NATIONAL HEALTH EMERGENCY" THEY'D BE MOVING MOUNTAINS TO STOP THE EPIDEMIC AND RECOVER KIDS. Like the CDC and the AAP, they're paralyzed. To honestly address autism, they'd have to recognize that the common factor among these children is the vaccinations they receive. It should be a major focus but incredibly, it's not. Pretending to recognize and address the autism crisis does nothing but waste time and money. The IACC, along with AAP and the CDC have failed our children. And these kids are not going away. As they age and we have to care and support hundreds of thousands of disabled adults with autism, it's my sincere hope and prayer that we don't turn to the IACC for answers.

Anne Dachel

Media

mom4truth

"Is there something we can do? If there is, I will do it. Protest, phone, march, rally... anything."

Ditto!!

We need to take meaningful action. Their dismissive treatment of an urgent health crisis is beyond unacceptable.

K Fuller Yuba City

It is so hard not to lose hope in my government. At every turn we are shown that my child does not have the right kind of Autism for these people. He was not born with Autism, so he does not count. This committee will send my tax dollars away from help for my child.
How do these people sleep at night? What kind of person can ignore the needs and damage of thousands of children?

concerned mom

CAA should make room for any of the bright and caring individuals you have named in your last paragraph! ASAP

Alison Macneil

You are so right Katie, the biggest international children's health emergency in my lifetime and Tom Insel has so little he needs to cover he can end the meeting 2 hrs early!That's disgraceful.Is there something we can do? If there is, I will do it. Protest, phone, march, rally... anything. Tom Insel should be ashamed of himself.

Benedetta Stilwell

Politically stupid I am! How does all this work? I mean how did these people get on this IACC to begin with? What would it take to get Mark Blaxill, Babara Fisher, and the Polings on this committee?


Cathy M

Katie - Thank you for your statement and for telling it like it is - I whole heartedly agree!

Harry Tembenis

Way to tell it like it is, Katie !!!
Great job!

Autismville

Well said Katie... Thank you.

Tanners Dad

The campaign to call Pelosi again should be renewed to reinstate the AS seat, give our organizations a seat, and review why meetings are being adjourned early. We could give them a lot more to put on their agenda. Time to boot Insel! Not gonna wait 66 more years for a solution to the Rising Autism Pandemic Evolution... The Rt #APE of Minds and Bodies

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