Katie Wright on IACC 2012
By Katie Wright
Secretary Sebelius came to address the 2012 Inaugural Interagency Autism Coordinating Committee. Over and over again Sebelius has failed to connect with the concerns affecting the 2 million American families affected by autism, and this time was no different. By any stretch of the imagination autism is a national crisis, a national emergency, an epidemic. 1 in 88 American boys have autism. That is an astounding number, a number with tremendously negative implications for the continued success of our country.
More American children have autism than those with all pediatric cancers and HIV combined. So how did Secretary Sebelius and NIH director Dr. Francis Collins describe this epidemic? “Autism is a national health challenge.” “A health challenge?” That sounds like a good thing! Does anyone remember the President’s National Physical Fitness Health Challenge of the 1980s? School aged kids who met minimal Phys Ed requirements earned a “diploma” from President Reagan. I remember proudly hanging my “health challenge” certificate on the wall. It was a “challenge” to do the arm hang for 30 seconds. Autism is not a “challenge,” autism is a national health emergency.
However, what disturbed me more about Sebelius’s speech was its primary focus on the Affordable Care Act, rather than autism. Sebelius talked about how difficult insurance reform has been for the administration, how the Congress is trying to repeal the Affordable HealthCare Act…the subject of children and families suffering with, not just celebrating, autism barely came up! The only stakeholders Sebelius acknowledged were the 4 IACC members with HF Aspergers. None of them even campaigned for the CAA, the act that made IACC possible. Even worse, at least one of Sebelius’ appointees campaigned against the CAA!
I would like to see Secretary Sebelius praising Democratic Congressman Matheson for voting against President Obama’s Affordable Health Care Act. Matheson not only voted against the law but is fighting to repeal it. Matheson brags, “I will vote against the Affordable Health Care Act at every opportunity!” Now imagine Secretary Seblius rewarding the Congressman with a seat on the HHS health insurance committee after publically thanking him for lobbying against the Affordable Health Care Act in the first place.
Secretary Sebelius failed to demonstrate that she understands: a) for many families autism involves tremendous suffering, b) too many people with ASD have disabling medical problems, c) the majority of ASD families want more environmental and less genetic research and d) the CAA was passed and the NIH has money to spend on autism research thanks to the tireless lobbying work of ASD families throughout the country. Easy stuff to understand and validate. Nothing controversial here. It would have cost Secretary Sebelius nothing to acknowledge these points. And it would have been the smart thing for her to do.
Then we heard from NIH Director Dr. Francis Collins. Immediately Collins complained about the paucity of research funds. Listen, we are realists. The autism community is not fighting for more research money; we just want to better utilize the money we have! There is too much waste and redundancy in NIH financed autism research and families want to put an end to it.
Let’s begin by ending the ACE program and use that money for innovative autism treatment research. The Autism Centers for “Excellence” are a disaster. Way too much of the ACE budget goes to overhead. I found all these tricky NIH autism research grants for “special ACE supplementation" or “ACE core supplementation.” Translation: supplementation=bureaucracy. ACE does not adhere to IACC’s Strategic Plan priorities and does almost no environmental or medical treatment research. ACE performs no cutting edge research, in fact almost no research marginally useful to those living with autism. 90% of ACE research involved genes, brain imaging (to the 10th power! Redundancy galore) and early diagnosis. Stakeholders play no role in the running either of ACE centers or in the choosing of the grants or setting research priorities. There is no accountability mechanism at all. ACE is the ultimate autism pork: a giant employment project for university geneticists and psychologists. Let’s end it, now, today, goodbye, good riddance.
Autism parents know a lot more about how to stretch a dollar than the NIH. Parents from SafeMinds, the NAA or Generation Rescue would squeeze 100x the value out of ACE money and actually help people living with autism in the process. Dr. Collins, I urge you to get these organizations involved in NIH autism research and I promise you that we will see transformative progress.
Dr. Collins did display an understanding of the need for treatment research and the failure of the NIH to make progress in this area. However, Collins went on to point out what he considered some modest NIH funded research successes. Yes, the usual learn the signs campaigns (we learned the signs now what?), better diagnosing and the obese Moms cause autism research! I remember sitting there thinking, “no he did not just say that.” The “fat moms cause autism” research has been thoroughly ridiculed by families and scientists alike. The fat moms study is a perfect example of inane and wasteful autism research. Let’s be serious and do some real environmental research instead of Mom blaming nonsense.
I mean this is autism 101. Autism is strongly linked to inflammation. Obesity = inflammation. It isn’t healthy for ANY Moms to be obese while pregnant. OK, now let’s actually learn something new.
Congressmen Chris Smith and Congressman Michael Doyle showed Secretary Sebelius how it is done; how to address autism as the national health emergency it is. The congressmen came to IACC and gave heartfelt speeches about what autism means to their constituents and why we need answers. Doyle and Smith spoke with a real sense of urgency and actually talked about the need to prevent autism. Smith recounted New Jersey’s history of environmental contamination and how hard NJ families worked to get the CDC to research the giant autism hotspot in Brick Township. Smith discussed foot-dragging at the CDC and why consumer advocacy is essential. Smith and Doyle spoke about how difficult it was passing the CAA and how essential our grass roots campaigns were.
Congressman Doyle spoke about the need for bipartisanship. Autism is not a republican or democratic issue. It is about serving the constituents. No re election speeches here- it was all about autism.
Finally Michael Strautmanis spoke. Mr. Strautmanis is a special counselor to the President. Strautmanis spoke movingly about his own experience with his ASD teenage son and the struggle to maintain safety in the home. It was a poignant speech from a loving father and compassionate man. However, it was a speech we had heard before. Mr. Strautmanis is not interested in autism research. Listen, my husband isn’t either, that’s fine. However, we desperately need someone in the White House or the HHS who closely follows the autism research and can hold the NIH accountable for progress. We cannot continue from this place of research stagnation, with the same people in charge, doing the same things the same way, investing in the same lackluster research and failing our families.
I appreciate Mr. Strautmanis’ empathy very much. However, we don’t need him making apologies for our families because we are fed up with the NIH’s failure. Strautmanis told the committee that he understands that it must be hard to hear all the criticism about their actions regarding the state of autism research. He asked them to hear these concerns as they remember ASD parents haven’t had a good night sleep in a while. Gosh, isn’t that like saying don’t listen to no-nonsense breast cancer advocates because they are probably menstruating? I think Mr. Strautmanis meant well, trying to make the committee understand the tremendous challenges our families face. However, what about the research? Where are the calls for change, excellence or real consumer representation when it comes down to actually choosing the grants? What is he going to do about the fact only 5% of ASD research money studies environmental factors or the fact that less than 1% of ASD research money studies medical interventions? I don’t have the power to fix that Mr. Strautmanis, but you do.
Despite what the CDC and the NIH may believe we cannot early-diagnose and “learn-the-signs” our way out of this epidemic. The NIH needs to send out RFAs on environmental science, medical treatment and yes, vaccine/regression research. This NIH passive “I’ll fund the research I like” no matter how unimportant, redundant or dumb (fat moms) behavior has to end.
--
Katie Wright is a Contributing Editor.
Oh, an if that help, it is easier for me if you ask specific question because I can answer them in details.
A.L.
Posted by: Autistic Lurker | July 30, 2012 at 08:33 PM
Ok, fair enough. What are your questions?
A.L.
Posted by: Autistic Lurker | July 30, 2012 at 08:28 PM
Lurker;
Sigh;
I am having to play 20 questions here.
You provide a little and I am having to guess.
So I was not exactly carried away - puzzled would be more like it.
Posted by: Benedetta | July 30, 2012 at 06:54 PM
@Benedetta,
don't get carried away with the diagnostic of lunatic, the diagnostic papers I have on hands (provided to me by request from the last doctor) never mention schizophrenia or psychosis and I can provide 2 psychiatrist who can attest I never have been psychotic. Lunatic is just that, I tend to be easily absorbed by TV or a book.
A.L.
Posted by: Autistic Lurker | July 30, 2012 at 05:10 PM
Hera;
I will pray for your son.
Keep up the good fight, for mine too did not speak. Up untill the fourth grade - .
@Lurker - Hera is right there is a lot going on besides just mentally.
The descripition as - Lunatic - The only thing I can think of is that they meant you had psychosis, or schziophrenia when you were 6 or 7. I am sorry Lurker. That must have been tough. It also means that you probably were out of it enough not to really know just how sick your body was.
Also Sczihophrenia and bipolar sure seems to go along with all of the other stuff that is going on with autism.
It also means you had better be careful with what you take into your body such as alcohol.
I found this and perhaps this explains what happened from the time you were six untill now at age 37?
QUOTE: "The Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview — Revised (ADI-R) are considered to be the `gold standard' in diagnostic evaluations for autism. Developed as research tools and now gaining wide clinical use, the ADOS/ADI-R assessment package has been demonstrated to differentiate children with autism from those with other developmental disabilities; however, little work concerning the reliability and validity of the tools in children with a known history of psychosis has been undertaken. We report on the administration of the ADOS, ADI-R and clinical judgment in three cases of Childhood-Onset Schizophrenia. All 3 children met both ADOS and ADI-R criteria for an autism spectrum diagnosis, even though none of them received a clinical diagnosis of autism from either a research child psychiatrist or an experienced clinically trained, research psychologist with expertise in autism." .
@Lurker; It may interest you that many that have an autism diagnosis also has other things dignosed too. Such as tourettes and bipolar, and obssessive complulsive disorder, hyperactivity, Attention deficit, and over the whole spectrum of autism it is 1 out of 4 have epilepsy.
It is never just - just - just autism.
All of these things psychs are trying to tease apart, by behavior.
I am not sure it is really worth the trouble, or even the right thing to do.
Now I would understand if it was bio - medically being teased apart;
You know - Teasing apart what is going wrong with the endocrine system; the hypothalmus is not releasing enough stuff and keeping the pituitary working so hard that it has to enlarge. Same again for the thyroid, or maybe it is the pancreas and hypoglycemia, or too active adrenal glands -- all of which can cause manias and if bad enough ---- psychosis.
or an infection that was able to actually pentrate the brain.
But many, many have problems that criss cross the endocrine system and the immune system - which means lots of physical pain like anywhere in the GI track from acid reflux right on down - down, or asthma, or headaches, leg aches, body aches, sinuses and on and on.
Posted by: Benedetta | July 30, 2012 at 03:49 PM
I had 3 diagnoses; one made in 1982-1983 when I was 6 and 7 years old, this one was inconclusive (I was deemed lunatic with language development issues).
One in 1995 to get SSD benefits; this one was never communicated to me but I successfully got SSD. I was 19 years old.
The last one was in 2004 when I was 28 years old; the doctor reviewed the diagnostic paper from 1982-1983 and all my family did the interviews needed for the ADI and the ADOS.
Now, what changed between 1982-1983 (when I went to school at the hospital) and 2004 is the DSM (DSM-III in 1982 and DSM-IVr in 2004) and the appearance of tools (ADI, ADOS) based on the DSM-IVr. Under the new standard, I do get a diagnostic of autism.
A.L.
Posted by: Autistic Lurker | July 30, 2012 at 11:00 AM
A.L.,
you may or may not be aware that in having friends, choosing to communicate and interact on a board, having a career, you are different than many with an autism diagnosis.
I don't know what personal challenges you have faced in your life, but as you are now, most of the parents with children who have autism would b delighted to have their chid turn out like you.Unfortunately, most of their children have a different type of autism from you.
One of my friends oldest boy is non verbal, occasionally has temper tantrums in public in which he throws chairs around the room, and she was working on teaching him how to open cans to cook so that if after she died he ended up in a group home he would have as much independence as possible.She dreams he may have some type of assisted living when she gets too old to care for him,rather than going to an insitution.
You talked about being an advocate;if you would advocate for these people it would be wonderful.What kind of things would you advocate to help these people?
Some extremely high functioning people with an autism diagnosis are unaware that for many people, the kind of experiences Benedetta describes are the norm.
I completely understand why you don't want to be fixed or cured; from what you have said you are healthy, happy have a great career and have friends; what is not to love?That is certainly success by anyones standards.
Yet some of our children will never even be able to ask for a drink of water.Imagine being trapped like that for your whole life .These people have seizures, not good health.
(By the way Benedetta, those who describe vaccine injury often seem to also have bowel problems.I wonder if some of these kids have a type of primary immunodeficiency; never used to be tested for, and apparently live viruses are very dangerous for these kids..Not sure if it is being tested for now.)
I someitmes wonder if amongst all those diangosed, there are different subsets.Some like Benedettas son, and many other children, have severe brain damage, and need help to regain the function that was their birthright before their brains were damaged.
Other people who are very high functioning and are described as being on the autism spectrum,may get a diagnosis even though in actual fact they are simply a normal variation of the human race, no damage involved, who prefer less social interaction.I think the experiences of the two groups are very very different.
(By the way A.L., my own son has severe speech delay.I pray one day he will be able to communicate as well as you.He is a beautiful boy.Maybe you could pray for him too.)
Posted by: hera | July 30, 2012 at 10:10 AM
You have mine, now don't you?
I have explained to you how things are that are pretty exactt.
I have nothing to hide.
I feel if I hide anything, I would be a bad person.
Because they need to be said.
You come on here and make a vague statements. That are confusing at best.
What age were you when you were dignosed with "Not aspergers"
But
"autism"
Posted by: Benedetta | July 30, 2012 at 08:56 AM
@Benedetta,
First, explain to me what you will do with my information?
A.L.
Posted by: Autistic Lurker | July 30, 2012 at 12:31 AM
Lurker;
Did you notice that the schools were on to my son at the very first.
As was I.
Now what age were you when the medical doctor with the same tools as the schools dignosed you with autism.
Not aspergers??? But sure enough autism.
You need to explain that some.
Posted by: Benedetta | July 29, 2012 at 07:41 PM
A psychiatrist is actually a medical doctor and can give you prescription medicines for your problem.
How can I stress that again, the psychiatrist who diagnosed me is indeed a medical doctor doing research on autism. He used the gold standard tools (ADI,ADOS) along with all the developmental testing tools he had access such as the Wechsler, the raven and a number of other assessment tools which I don't recall the name and finally, fMRI and DTI for research purposes.
A.L.
Posted by: Autistic Lurker | July 29, 2012 at 05:46 PM
So according to your criteria everyone is autistic and some are childish (to use conventional language) including everyone under 18, and some are childish over 18 (the problem cases). While some of us are fed up with the psychiatric profession this sounds like pure whimsy.
Posted by: For Robin | July 29, 2012 at 05:16 PM
Robin;
I am sorry, you will have try to explain it somewhat differently because I do not understand? What I do understand is that my son had a brain injury - that I get. I may be somewhat autistic??? Well we all sometimes don't catch on to things and feel like we don't exactly understand or fit in. So the whole world is somewhat brain damaged it is just degrees????
Lurker;
The schools do a darn good job evaluating. Psychologist and psychiatrists have the same test, the same types of protocal they have to follow to make a dignosis.
A spychologist will talk to you about your problems.
A psychiatrist is actually a medical doctor and can give you prescription medicines for your problem.
I already knew my son was having problems because I witnessed his vaccine reaction. And he stopped walking the very next day.
I hoped it would turn out okay and so I waited.
But he was late to potty train, he was not talking, he could not peddle a tricycle, and he cried sitting on his bike in frustration every day. Broke my heart then and still breaks my heart now.
@Robin; how is that for sort of not fitting in and knowing it?
@Lurker; The Pre school - teacher told me what I already knew there were a lot of problems. Not just social, but verbal, and physcial problems. We then went hunting for more specific help.
And we got it, for language and physcial thearpy.
But not the reoccurring temperatures and health problems.
In kindergarden - I came in and watched my very quiet little boy play by himself, with his dark rings under his eyes.
By the end of kindergarden they were evauluating him already and by the first month of the first grade they had him already labeled PDD-NOS.
Of course I did not know what that meant - because I was clueless no straight forward language in this mess, learn as you go.
But there is a lot more to the label autism that social problems.
Posted by: Benedetta | July 29, 2012 at 03:45 PM
Hi A.L.,
Thought it might be helpful to go over the DSM IV TR fourth edition criteria for autistic disorder. ( slightly abbreviated)
For a diagnosis of autistic disorder 299 a total of 6 pointers altogether, with
At least two from
A marked impairment in use of non verbal behaviors such as eye to eye gaze
B failure to develop peer relatonships to appropriate developmental level
C lack of spontaneous seeking to share enjoyment , interests or achievements with other people
D lack of social or emotional reciprocity
at least one from
2 Qualitative impairments in communication as manifested by at least one of the following
A delay in or total lack of development of spoken language ( not attempting to compensate through alternative modes of communication such as gesture or mime)
B in individuals with adequate speech marked impairment in the ability to initiate or sustain conversations with others
c. Stereotyped and repetititive use of language or idiosyncratic language
lack of varied, spontaneous make believe play or social imitative play appropriate to the developmental level
at least one from
restricted and sterotypical patterns of behaviosr , interests, and activities as manifested by at least one of the following
encompassing preoccupation with one or more stereotyped and restricted patterns of behavior, interests, and activities that is abnormal in either interest or focus
apparently inflexible adherence to specific non functional routines or rituals
sstereotyped and repetititve motor mannerisms ( ie hand or finger flapping or twisting)
persistent occupation with parts of objects
The accompanying discussion in the DSM IV also mentions that in most cases, there is an associated diagnosis of Mental Retardation which can range from mild to profound.
Many people with a diagnosis of autism will remain non verbal all of their lives. I am sure that you have indeed been diagnosed as you say, but I put the criteria here so you might understand how differently you present from the majority of people with an autism diagnosis.
(By the way people with Apsergers do not have a delay in cognitive development or language development)
wish you all the best,
Hera
Posted by: Hera | July 29, 2012 at 03:41 PM
I am autistic, not asperger. I never had been evaluated by a psychologist but by a psychiatrist doing a lot of research on autism and I went to see the psychiatrist to be evaluated; not to get counselling.
A.L.
Posted by: Autistic Lurker | July 29, 2012 at 01:48 PM
"More American children have autism than"
In reality, NO children "have" autism. The world does not divide into those who "have" autism and those who do not. Rather people are more or less autisTIC just as they are more or less tall. The autistic syndrome is hard enough to explain to people without the needless use of this false language, not only here but also on all the official websites and on the (pro-vaccination) LeftBonkersRightBonkers blog too (not to mention every "peer-reviewed" paper parrots the same nonsense in its introduction!). You can start using the correct language right now. Autistics with childness. (All persons have childness up to exactly age 18 if you didn't already know.)
Posted by: Robin P Clarke (end of comment) | July 29, 2012 at 01:18 PM
Lurker;
When it comes to this disease - autism- it is a psychologist that named a personality disorder, but we all are experience so much more problems than just mental or personality problms.
It has much to do with the body as well.
Jake has to take vitamin b12 shots to maintain his health.
Tell us about yourself?
You are a master brewer, you have asperger, what lead you to a psychologist to seek help?
Posted by: Benedetta | July 29, 2012 at 08:52 AM
I'm not blogging, but here goes:
I don't have bowel issue because I'm not stressed. I never did any experimental treatment to fix my issues; yet, I have a disability whose name is autism and which has been diagnosed by a well known psychiatrist doing research on autism. I can be as active in advocacy as has been Jake Crosby; now, you don't question his diagnosis? Why are you questioning mine.
A.L.
Posted by: Autistic Lurker | July 29, 2012 at 12:10 AM
Kim;
I meant to thankyou for your concern.
And you are right on about the feeling of constant pressure till it is normal for them.
Not until a few years ago when we went on a none carb diet, that my son expressed surpise at how he felt great!
When pressed he said it was his lower stomach that felt really good.
You are right it is a constant, ongoing thing - and only when it kicks in to severe (maybe nerves like going somewhere, or eating a little more carbs or birthday cake which is his favorite food in all the world - no close seconds ) did he pay any attention to it.
We know where all the bathrooms are any place we have eaten, shopped, gone to for more than a few minutes.
Posted by: Benedetta | July 28, 2012 at 03:35 PM
Sounds like our anonymous ND troll is about as on the spectrum as I am. He'd make a great new member for IACC.
Posted by: Another Lurker | July 28, 2012 at 02:06 PM
Katie, thank you for taking a leadership role on this tragic issue, one that is truly rooted in medicinal toxicity, not genetic predetermination. I admire your strength and courage to speak the truth---a virtue that we desperately need to hold on to in these times of profit before safety, fear-mongering, arrogance, and complacency from those in leadership at the highest levels.
I know many parents who support Autism Speaks and are completely unaware of the causative role vaccines have played in their children's poor health, analagous to the Susan B. Komen foundation's efforts in promoting dangerous medical interventions (chemo & radiation treatments/diagnostics). A paradigm transformation is desperately needed here.
Stand tall!!!
Posted by: Dr. Febbraro | July 28, 2012 at 12:50 PM
Lurker;
Your beer has milk protein in it? I did not know that!
I can understand the gluten in it.
It also has high carbs, which is just horrible too
an then there is also the
alcohol.
My son does not drink beer or alcohol because you do not mix alcohol with Keppra - a seizure/epilepsy medicine.
percentage pf aspergers that have epilepsy? 1 out of 5.
*So you don't have stomach problems.
*You don't have epielpsy
*You do have friends'
* You are commenting, blogging and lurking????
Posted by: Benedetta | July 26, 2012 at 09:50 PM
@Kim,
I'm a master brewer by training and the beer I brew are full of gluten & casein; you mean that if I get bowel issues with my reserve of beer, i wouldn't had noticed?
A.L.
Posted by: Autistic Lurker | July 26, 2012 at 07:56 PM
Hi Katie! BIG fan here. :) But just in case anyone who was relatively new to the subject came across this article, you might correct the incidence rate at the beginning of the article - it's not just 1 in 88 *boys*, it's 1 in 88 *kids* who were 8 years old in 2000 (can't remember the stat for boys - I think it's at least 1 in 50?)?
Just would hate for someone to misquote the statistic and underrepresent the problem.
I'm grateful for you and all you do!
Posted by: Kelly in Dallas | July 26, 2012 at 05:34 PM
Benedetta - I'm sorry for your son. I remember being in a grocery store and watching a person I know to have Asperger's in town and whose cart contents blew me away - it was chock full NOTHING but of English Muffins, Kraft Mac and Cheese and dairy products. Wheat and Dairy. Gluten and Casein. I believe that many people with HFA and Asperger's have had stomach issues for so long they don't even recognize them as such. It's like when I was a child and got my first pair of glasses and saw a billboard in crisp focus for the first time - I was noticeably shocked and only then realized how poor was my vision. KIM
Posted by: Stagmom | July 26, 2012 at 04:40 PM
Lurker;
I have a 26 years old son with PDD-NOS.
He has his bowel problems.
He also has no friends.
And before he'd read anything here, much less comment he would have to be obssessive compulsive interest in the subject and - even then - he would Never bother to comment.
Posted by: Benedetta | July 26, 2012 at 04:29 PM
Anne Dachel,
It isn't true because I'm autistic and I never had bowel issues, nor does my autistic friends.
A.L.
**************
Most of the autistic children I know, have significant bowel issues
Very few of the autistic children I know, enjoys the luxury of multiple friends
Not a single one of the autistic children I know..... lurks.
Posted by: Barry | July 25, 2012 at 09:09 PM
In my opinion, people fall may fall into a trap of making snap conclusions about some of the autism research. Remember-some studies only show a relationship; they do not tell you why that relationship exists.
Here is a possible take on the fat mom: The fat mom eats more than the thin mom. Therefore she takes in more mercury in her food. The mercury is deposited in the fatty tissue and when she becomes pregnant, the mercury travels into the fetus- who enters the world already high in mercury.
and now for the freeway near your home- Does the air near the freeway contain more mercury? Maybe.. If not mercury, possibly the air contains toxins that occupy the proteins in the mom's body which are required for detoxification. The mom's doc told her it was just fine to eat a can of tuna each week and she foolishly believed this.Her body proteins are unable to catch on to the mercury and take it out in the urine, so she just passes the mercury on to her helpless fetus.
Would I put research money into studying fat moms and freeways ? probably not. I'd rather see the vax- unvax study, but nevertheless, lets keep our minds open.
Posted by: Cherry Sperlin Misra | July 25, 2012 at 03:34 PM
I pretty much agree with Raymond Gallup as to the futility of spending time, money on bodies such as the AICC. Please let me know- anyone out there- what can be the possible use of these efforts.? Arent there better things to dofor autism than bang your head against a wall- and spending money to get to the venue to do it? The way I see it, the people who caused this disaster of autism are waiting for the autism parents to pass away. Most of the autism cases would have occurred between about 1985 and 2005. Just a few little spikes of extra cases during the fake flu pandemic years, but they can iron those out by combining those years with other years and taking the average. So they just need to distract and ignore us till we die off and then statisticians of the future can work things over to show that there never was a real tsunami of autism. ( I mean - hey! how many people alive today know what the words Minimata and Thalidomide signify?) Now I know this has a negative tone, but what I would really like is for people to think seriously about how to alter this possible outcome.
Posted by: Cherry Sperlin Misra | July 25, 2012 at 03:15 PM
Bob Moffitt, thanks for your comments yesterday on my focus on language development. That since 2003 the language disorder has not been highlighted in the IACC Strategic Plan or Road Map is beyond belief. This is one reason why it should be so important for the IACC to give more time for public comments, and engage in conversations with members of the public. It would be useful to have an IACC meeting devoted to this activity.
Meanwhile, I responded yesterday to Matt Carey’s comment on the LBRB blog on what the IACC is charged to do. I have been inundated with responses. Excellent! As I just posted over there, we need conversation on causes, treatments, and lifespan care for children (and adults) with autism.
Now I look forward to what gets discussed by the IACC on Friday. I will be at work, so won’t be able to listen. I hope the webinar is recorded and posted online.
Katie, thanks again for your appraisal of the recent IACC meeting. Well done!
Posted by: Eileen Nicole Simon | July 25, 2012 at 08:52 AM
Anne Dachel,
It isn't true because I'm autistic and I never had bowel issues, nor does my autistic friends.
A.L.
Posted by: Autistic Lurker | July 25, 2012 at 02:04 AM
Thank you for all you do.
Posted by: 4Bobby | July 24, 2012 at 09:20 PM
Secretary of Health and Human Services Kathleen Sebelius, someone to trust to stop the autism epidemic and help the vaccine damaged kids? I don't think so per below........
Government Immunizes Pharmaceutical Companies From Swine Flu Immunization Lawsuits
A new document, signed by Secretary of Health and Human Services Kathleen Sebelius, reportedly immunizes Swine Flu vaccine manufacturers from lawsuits that result from any new swine flu vaccine -- just in time for protecting Pharmaceutical companies, including one that patented a Swine Flu vaccine a year ago, rushing to make billions of dollars in profits from a suspiciously questionable Swine Flu Pandemic manufactured by the World Health Organization (WHO) when the Swine Flu appeared during President Obama's visit to Mexico this past April.................
http://www.americanchronicle.com/articles/view/111280
Posted by: Raymond Gallup | July 24, 2012 at 07:36 PM
I think we need to complain to our congressional and senate reps. Most worked hard to pass the CAA and get this $ to spend on autism research. They would not be happy to know so much of it is being wasted on low priorities or redundant brain imagining. Our reps need to understand that of course early ID research is great but that area is saturated w $ we need treatment research to help people living NOW. They usually really latch on to that point once it is explained that, sadly, early ID rarely = cure.
Secondly yes I really admire much of the work of the "fat moms" study authors but I am not going to pretend I like this one. It is stupid. Everyone was laughing it at on TV. It was a rare moment in which the media and nearly all the ASD community was in agreement. Being fat = bad. Hitting my hand with a hammer = pain. Wow.
Posted by: Katie Wright | July 24, 2012 at 06:41 PM
So, who decides who gets what money because I think we need to be talking directly to them.
Posted by: Heidi N | July 24, 2012 at 05:41 PM
Love to Katie! And as for inflammation...no kidding!
I weighed 96 lbs pre-pregnancyy. HEY RESEARCH TEAMS!: Wanna explain why I doubled my weight during pregnancy? or how I lost 10 lbs in the 20th week and gained it back the next? PDD ain't a cake walk but, it did start prebirth for us. Ping me if anyone wants to add research or similarities.
Posted by: s | July 24, 2012 at 05:37 PM
@ Eileen Nicole Simon, RN, PhD (Biochemistry)
As the proud grandfather of a loveable TWELVE YEAR OLD WHO CANNOT SPEAK .. I want to take a moment to personally thank YOU .. for the extra-ordinary .. courageous .. effort YOU have made .. "reading (seeking evidence) on language development and the brain since at least 1964".
My grandson and our family .. bless you for your dedication.
@ Katie
Webster's dictionary describes "euphemism" as the "use of a less direct word or phrase for one considered offensive".
That Secretary Sebelius carefully selected the euphemism "challenge" .. instead of "epidemic" .. hopefully .. will eventually provide the evidence of her own complicity should future events .. unknown and unrecognized today .. such as .. appointing an independent prosecutor .. result in criminal prosecutions.
Why do I say that?
High level Penn State University officials thought they had protected themselves when they used the euphemism "guests" .. instead of "victims" .. to describe the children that Sandusky had been "inviting" onto their campus.
Sometimes .. if the crime is horrendous enough .. formerly untouchable .. high level officials .. using "euphemisms" become "evidence" of THEIR OWN complicity in CRIMES.
Posted by: Bob Moffitt | July 24, 2012 at 05:34 PM
Hello friends -
The “fat moms cause autism” research has been thoroughly ridiculed by families and scientists alike. The fat moms study is a perfect example of inane and wasteful autism research. Let’s be serious and do some real environmental research instead of Mom blaming nonsense.
It wasn't wasteful, it was quite clever. Jesus Christ, that data was born from the CHARGE study, the most comprehensive study of environmental insults and autism that we've seen so far. The chemical makeup of the mother during pregnancy is the fetuses environment; the obesity paper is an environment paper. Don't you get that?
The obesity paper was written by the MIND institute, who are some of the only people out there actually trying to detangle autism as a medical condition and spend tons of their focus on immunological findings. The primary author on the obesity paper is Krakowiak, who also is author of Altered T cell responses in children with autism., Associations of impaired behaviors with elevated plasma chemokines in autism spectrum disorders, and Elevated plasma cytokines in autism spectrum disorders provide evidence of immune dysfunction and are associated with impaired behavioral outcome all of which implicate immune dysregulation with autism. This lady should be one of your best friends, but according to you her findings are 'inane'. Do you think you could give her a lesson in autism 101?
Another author on the obesity paper is Hertz-Piccioto, who people on this site love because she's willing to advocate against a static rate of autism. Do you believe that she suffered from a sudden, transient case of idiocy during the analysis and writing of this one particular paper? Why?
I mean this is autism 101. Autism is strongly linked to inflammation. Obesity = inflammation. It isn’t healthy for ANY Moms to be obese while pregnant. OK, now let’s actually learn something new.
If we already knew obesity in the mother was a risk factor for autism, there should be something in the literature previously to this effect; there isn't anything.
Of all places, the obesity paper ought to be front and center on this website; it is a dagger in the heart of the diagnostic driven epidemic argument, the foundation of how talking heads can put forth that autism is a 'challenge' instead of an 'emergency'.
If we accept that metabolic syndrome is a risk factor for autism, then other findings start making sense like the maternal asthma study.
It isn't as simple as 'being obese during pregnancy is unhealthy', it is, a lifestyle associated with increased inflammation carries an increased risk of autism in the offspring. But as a people, we are fatter, more diabetic, and more asthmatic than generations past (or from different cultures); once we accept this, we must, also accept that autism rates are, indeed, rising.
This paper illustrates the empirical weakness of the 'greater awareness' argument; no finding can invalidate it, if we found one in ten children have autism, 'greater awareness' is responsible, if we found twenty five percent of those are caused by fat mothers, or asthmatic mothers, or hypothyroidism in mothers, or endocrine disruptors or whatever, greater awareness simply is responsible for the rest, whatever that happens to be at the time.
You should be using the obesity paper to beat the hell out of people who cling to the fantastical variances of soft scientists; instead, you worry about being called fat and 'blaming the mother'. The obesity paper doesn't blame the mother any more than the maternal asthma paper or the maternal hypothyroidism papers; if you want environmental research to be taken seriously, it needs to include the in utero environment.
- pD
Posted by: passionlessDrone | July 24, 2012 at 03:49 PM
I found this on FB: Can Autism be cured? http://drhyman.com/blog/2010/05/12/can-autism-be-cured
It's from June 2010 and it's by a real live doctor named Mark Hyman.
"MARK HYMAN, MD is dedicated to identifying and addressing the root causes of chronic illness through a groundbreaking whole-systems medicine approach called Functional Medicine. He is a family physician, a four-time New York Times bestselling author, and an international leader in his field. Through his private practice, education efforts, writing, research, and advocacy, he empowers others to stop managing symptoms and start treating the underlying causes of illness, thereby tackling our chronic-disease epidemic."
HERE'S WHAT HE HAD TO SAY ABOUT AUTISM...
"TODAY MOST PEOPLE BELIEVE that Autism is a genetic brain disorder. I’m here to tell you that this isn’t true. The real reason we are seeing increasing rates of autism is simply this: Autism is a systemic body disorder that affects the brain. A toxic environment triggers certain genes in people susceptible to this condition. And research supports this position.
"Think about it. Rates of autism have skyrocketed over the years, from an estimated 1 child in 3,000 to just 1 in 150 kids today. Sure, wider criteria for diagnosis and better detection might explain some of it but not an increase of this magnitude.
"Dramatic scientific discoveries have taken place during the last 10 to 20 years that reveal the true causes of autism, and turn conventional thinking on its head. For example, Martha Herbert, MD, a pediatric neurologist from Harvard Medical School has painted a picture of autism that shows how core abnormalities in body systems like immunity, gut function, and detoxification play a central role in causing the behavioral and mood symptoms of autism." CON'T READING...
DR. HYMAN ON HOW TO FIX AUTISM
Step 1: Fix His Gut and Cool the Inflammation There
Step 2: Replace the Missing Nutrients to Help His Genes Work Better
Step 3: Detoxify and Reduce Oxidative Stress
So why isn't IACC (Sebelius/Insel) interested in having someone like this doctor on IACC? It seems he has real answers.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | July 24, 2012 at 01:46 PM
I once worked in a large university environment, where I soon learned that anything labelled "Center for Excellence" was a money sink to be scorned and avoided - if possible - like the plague.
Posted by: Rae N. | July 24, 2012 at 11:51 AM
In their comments to Sebelius, Redwood and Dawson described a national emergency affecting hundreds of thousands of CHILDREN.
Lyn Redwood:
"Dr. Insel, at the meeting back in October, you recognized this as A CRISIS, but we have not had an official recognition as A NATIONAL HEALTH CRISIS from the administration and we desperately need that to be able to mobilize the services."
"Because right now, we really don’t have that and we are in CRISIS MODE."
"So we truly are in CRISIS MODE and we desperately need your help."
Geraldine Dawson:
"If you look over the last several years, things have gotten worse. The prevalence has increased. In terms of treatments, we still don’t have effective treatments. There’s two FDA approved medical treatments, and they’re not for core autism symptoms. The age of diagnosis, the median age in the last CDC report was four years for autism and six years for Asperger’s Syndrome, and yet know that the age in which kids can be reliably diagnosed is 18-24 months. Kids don’t have access to early intervention. We have seen the costs of autism increase from $35 billion annually to $137 billion annually and we know that the adults, who are moving from adolescence to adulthood are unemployed and socially isolated and they’re facing tremendous health problems–heart disease, obesity, and other health problems."
"There is this real sense that things are not changing and that the government is not recognizing autism as A TRUE PUBLIC HEALTH CRISIS and EMERGENCY that needs some kind of national plan and top-down coordinated strategy, people working everyday to address what has become THIS TRUE PUBLIC HEALTH CRISIS."
In her response, Sebelius used the word "autism" ONCE--saying she didn’t really have any personal experience with it.
The rest of her remarks were vague and disorganized. She said nothing in reference to what Redwood and Dawson had just talked about. She was a woman totally out-of-touch with reality.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | July 24, 2012 at 11:08 AM
The Autism Research Institute, info available at http://www.autism.com/. Steve Edelson, the director of ARI, promises to fund a large scale independent study of vaccinated vs unvaccinated.
The IACC, NIH and CDC will do nothing except to anger and frustrate parents/autism organizations and waste their time and money better spent on families themselves. Let us face it, the IACC, NIH and CDC don't give a damn about parents and their vaccine damaged kids with autism. Nothing will ever change with them because they are responsible to the drug/vaccine companies, not to the families and the public in general.
Posted by: Raymond Gallup | July 24, 2012 at 11:06 AM
A meeting did evolve, thank you all thank you all.
A meeting did evolve, thank you all
To all those involved, the problem not resolved
This meeting should dissolve, just a stall , just a stall
Those prepare to support, on the way, on the way.
Those prepare to support , on the way.
It’s Past time to exhort, for services cut short
Too many on report, we can’t pay, we can’t pay
Human genome to blame, says the state, says the state
Human genome they claim, just our fate
There is no one to blame, medical cost to tame
It is all such a shame, not our fate, not our fate .
Elephant in the room, none so blind, none so blind
Elephant in the room, none so blind.
Moral urgency looms, humans look to your doom
Write it on all our tombs, lost our mind, lost our mind
Posted by: Benedetta | July 24, 2012 at 11:01 AM
Many thanks Katie ,just what lbrb don`t want to read ..spitting feathers they are no doubt..
Well done!
Angus
Posted by: Angus Files | July 24, 2012 at 07:58 AM
Katie, thanks for this excellent summary of the IACC meeting. I am glad I got to meet you and others from AOA at the meeting, and don a T-shirt that read $1 billion wasted researching what doesn't cause autism! True and sad.
I just finished responding on LBRB (Left Brain, Right Brain) to Matt Carey's comment on what the IACC is charged to do. I hope you don't mind if I plop it below, rather than provide just a link:
Thank you for your summary of what the IACC is charged to do. I have a son who will be 50 years old in September, and as I stated at the July 10 meeting, I have been reading (seeking evidence) on language development and the brain since at least 1964. I entered graduate school at the Boston University School of Medicine in 1969, in large part because of my frustration with pediatricians putting me down for reading everything I could find. “A little knowledge can be dangerous,” I was told by one smiling pediatrician. My background was in chemistry and computer science, and I knew I was capable of acquiring more than a “little knowledge.”
What I presented in the 3 minutes allowed for comments at the july 10 meeting is evidence gathered over the past 5 to 6 decades: (1) that blood flow is higher in brainstem nuclei in the auditory pathway than anywhere else in the brain, (2) that children learn to speak “by ear,” which is common knowledge, and evidence of the importance of intact auditory function in early childhood. (3) that high blood in the auditory pathway exposes this system to injury from any toxic or unnatural substance that gets into the circulation. (4) that genetic disorders often lead to transcription errors that result in faulty enzyme proteins. This is the case in phenylketonuria (PKU), in which toxic abnormal metabolites are produced that affect the brain. (5) that asphyxia at birth causes prominent damage to nuclei in the auditory pathway. (6) Obstetric interventions like clamping the umbilical cord before the first breath can cause a lapse in respiration sufficient to be injurious to nuclei in the auditory pathway. Finally, (7) that anoxic injury impairs the blood-brain barrier most notably in the auditory pathway (and basal ganglia), thus allowing anything in the circulation (like components of the hepatitis B vaccine) to enter and further damage these subcortical centers for hearing and motor function.
Three minutes was not enough. We need and deserve back-and-forth discussion of public comments. I may be wrong, and I clearly appear silly to many people. Can members of the IACC discuss evidence that refutes my understanding?
The IACC has focused since 2003 on producing a strategic plan and roadmap for research. Why has language development not been at the top of the list of priorities for research? Why hasn’t research on brain systems (not just neurotransmitters) involved in language acquisition been a priority? The language areas of the cerebral cortex are not fully developed at birth. They develop under the influence of trophic transmitters produced in brainstem nuclei of the auditory pathway, during the first 4 to 5 postnatal years, during the period that children normally learn to speak. I provided the evidence for this in the references cited in my written comments to IACC committee members.
I will be at work on July 27 when you have a conference call to discuss public comments. I hope that this discussion will be recorded, and that I can listen to it later. I hope some of the ideas I presented (and provided in more detail in my written comments) will be discussed. Thank you.
Eileen Nicole Simon, RN, PhD (Biochemistry)
Posted by: Eileen Nicole Simon | July 24, 2012 at 06:28 AM
Go Katie! Here Here!
Posted by: TannersDad Tim | July 24, 2012 at 06:11 AM