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Katie Wright: IMFAR Hasn't Come Far for People with Autism

Down drainManaging Editor's Note: Previous AofA posts on Imfar by Katie Wright include:
5/30/2010: Katie Wright Goes to IMFAR, IMFAR, Where Science Stands Still,

By Katie Wright

I know how hard it is to meet the needs of our kids. It is such tough going for so many of our families. Less than half of ASD kids make a recovery from early intervention and behavioral therapies alone. ASD kids suffer from an incredibly high rate of gastrointestinal distress, severe food allergies, and mitochondrial and immune dysfunction. PANDAS and Lyme disease are causing permanent neurological damage as they go undiagnosed in tens of thousands of ASD kids. Most of these problems go untreated because they are virtually unstudied. ASD families overwhelmingly want to see more investment in environmental, rather than genetic research as well as an open and honest discussion of our vaccine schedule and adverse reactions.

So are you ready to have your mind blown? IMFAR barely covered ANY of these issues. You want Fish on biketo know what kind of oral presentations IMFAR did offer?

1)   development of baby sibs, attunement of baby sibs, social cues of baby sibs…studies 1- 45….

2)   video modeling and the effect of robot therapies

3)   sequential social engagement, attunement of toddlers age 12-24 months - not to be confused with the social and nonsocial toddler events and toddler tracking social cues

4)   pupil light reflexes

5)   facial phenotypes (hypothesis that our kids have dysmorphic faces- helpful AND interesting!)

6)   XXY syndrome, Prader Willi Syndrome, Williams syndrome (it is nice that IMFAR really makes such  a giant effort to include that 1% of ASD people with these rare diseases).

7)   Head size (an old favorite), head lag (a new favorite!) as well as a study on comprehensive head nodding

I know what you are thinking! Yes, it keeps getting better!

Pills-money8)  In the Family Issues section:

A) depression in ASD parents (who attended this conference?)

B) ASD caregiver “characteristics”

C) predictors of distress in ASD mothers (listening to these lectures?)

D) joint attachment scripts in couples with ASD children (as in ‘this conference such a&%$^ waste of them, I told you we shouldn’t go!’)

E) emotional intelligence of ASD parents

9) “Core Problems” section- whatever that means?

A) infant social communication AND eye tracking

B) disrupted sleep good or bad?

D) preschool symptom severity

E) facial electromyography (?)

10) Co Morbid and Psychiatric Problems

A) affective not externalizing GI problems in

HF ASD people (thanks Nancy Minshew!)

B) relationship between poor sleep and functionality? Yes! (finally the mystery is solved!)

C) facial phenotypes

D) behavioral synchrony

E) psychopathology

Now don’t you feel a lot better knowing IMFAR is really on the ball regarding our children’s biomedical treatment needs!

11) Genetic and Genomic Research- the big boys! The kings of IMFAR! 48 oral presentations! God dna

I am sure if IMFAR sponsors could talk to you know they would say, “You’re welcome!”

Obviously I am having some fun here but all these oral presentations came right out of the IMFAR program guide. The most interesting research ideas were presented only in poster form, meaning sometimes people walk by that display. In the scheme of things there were a few Paul Ashwood and Arthur Krigsman lectures that I am sure were excellent. So to be fair only 98% of IMFAR was a waste of time.

Katie Wright is Contributing Editor to Age of Autism.




Steve; researching who is genetically most susceptible to environmental injury takes many millions of dollars, and gives 0 practical results.
We can't even afford to treat many of these kids, many go without even basic ABA etc, and you want this tiny pool of money to fund instead genetic research with no practical application?
If you want support of struggling families to have your research funded through tax dollars, then the information from your research needs to be practical and immediately useful.
Retrospective Vax versus unvax would be great, a serious look at effectiveness of various treatments, info on the sub set of autistic children with bowel issues. Does gluten free diet help those with autism and bowel issues? What about probiotics?
If in the past we had funded research into the genetics of those most susceptible to lung cancer, rather than studies of cigarettes, we would have failed millions of cancer patients. Similarly, we need to first figure out treatments and environmental causes.
If science has no desire to do that, then use the money to fund what treatments we have.

John Stone


One of the problems is the many years and children lost by trying to look at the problem backwards. Families have been driven frantic because this kind of research had priority over - on a simple level - what kind of environmental insults might cause dysfunction (indeed, if they hadn't witnessed it for themselves). Even Francis Collins admitted as early as 2006 that the answer to the proliferation of autism wasn't going to be genetic.

It may seem like some fascinating intellectual problem to you, but actually it is asking the wrong question.

Steve White

I am really upset reading these comments. It's precisely this attitude that makes a lot of the scientists want to avoid the parent/caregivers, or not even have their research associated with autism outside of the science community.
We are told the human brain is the most complex thing known in the universe. If that is true, is it any surprise figuring out what goes wrong with it is very difficult?
There are supposed to be at least several hundred genes involved.
We've got to support them and keep pushing for funding, not undercut them.


Maybe you all have heard of the diagnosis of CVID? If not you need to look at it! It is something I have been begging our immunologists and research facilities we have participated with for the last year now to look at. I have asked the immunologists to look at my kid's multiple medical problems and treat THOSE...not automatically put him under a mental diagnosis umbrella and leave his medical conditions untreated. This kind of audacity in a parent will automatically ensure a social worker at your appointment. (I digress.)

The list of symptoms is like reading about many of our kids on the spectrum. I am putting the link, but will share a few of the problems found. This is a primary immunodeficiency problem. We know that so many of our families have history of immune system problems in ourselves or relatives. Here are just some of the presenting problems.

Some of the presenting problems may be acute or insidious. Some present with seizures, signs of encephalitis, head ache, sensory problems, motor disturbances and personality changes.

Low IG classes
Severe recurrent infection
Autoimmune disease
Lymphoid hyperplasia
Persistent Diarrhea
Severe meningioencephalitis
......sound familiar?

Guess what is advised againsed giving in this patient population? LIVE ATTENUATED (weakened) VIRUS VACCINES. So if we have had a subgroup of kids who may have had some immune system problems we are throwing them over the with this vaccine schedule. Three live vaccines are given ....the perfect cocktail for disaster at an age when the sutures of the skull are fusing. The pressure on he brain resulting in Something called dysautonomia. I am putting a link here. Read it. Again, you won't believe the overlap of symptoms with our kids. So many of the sensory problems could be due to this. Our poor kids are genuinely miserable, and the best our docs are doing are sending them for hearing tests and putting them on a wait list for the regional centers.

I tell these people this is child abuse. If these kids are genuinely suffering so badly like is cruel to make them sit through hours of therapy under these conditions. No wonder they lash out and scratch and bite. I ask researchers and docs if they would like to be forced to work all day with these symptoms, stomach pain and severe diarrhea? (oops...I digress again...I am a bitter mom who is furious about child abuse being dished out by our docs and then we are labeled as crazy.).

Anyway....that is my latest crazy crackpot theory. I thought I would share because you may see your child in these disorders as well. It is time for these docs to treat the medical issues underlying the behavior. Unfortunately, I think most of these docs are incapable of thinking for themselves and practicing medicine. They are essentially following recipe protocols... And lack the ability to think outside the box. I am amazed by the fact that pediatric specialists are so woefully ignorant about the lastet findings surrounding autism and their lack of autonomy in educating themselves on the published research that is out their regarding some of the health issues going on with these kids.

I believe that the scientific community has failed us as well. They know that we have found very serious concerns with these kids. I believe they have a moral and ethical obligation to educate the CDC, NIH, and AAP about health issues we do know about. They do have information that could prevent injury in some of these children and educate about illnesses that pediatricians need to be treating. Current autism ideas in the medical community have left the pediatricians with no accountability or responsability. Quite frankly, I think they lack the integrity as well. I am becoming increasingly dissatisfied with the science communities lack of feeling towards their responsability in bridging the gap. Like my mom told me the other day autism parents deal from different stuff and motivation than the researcher. The difference here is GUTS and GRANTS!

Jackie Murphy
Sout San Francisco, California


Oops...I meant ...the skull can expand with sutures that have not yet fused. That is better! :-)
Jackie Murphy


They need to start looking at the time we typically see regression in these kids. The sutures of the skull fuse at 16 to 18 months. Then we see that there is a subgroup of boys who have rapidly growing head circumstance prior to that time. The may have some process going on like inflammation. The skull can accommodate this with infused sutures. When they are fused at 18 mos. There is no give resulting in pressure on the us regression.
Jackie Murphy


Felicia W.

You can find information on the maternal antibodies here:

I was asked to give blood to this project and later introduced myself to Dr. Van de Water. We found that my blood was a perfect control and the test was made from my blood as control. I can tell you that Van de Water genuinely cares about getting this help out to parents. She gives presentations to the public frequently and is very accommodating to speaking with concerned parents. She presses the boundaries of what she can do to make information available to the public as soon as possible. I wish all researchers had this same passion!

Barry Stern

Face it, folks. When 1 in 88 kids have autism compared to 1 in 10,000 twenty years ago, autism has become big business. Not only do we parents have to fight those who poison our food supply and environment and overcome the ignorance of the medical establishment when it comes to autism and the general area of nutrition, we must take on those who sympathize with our plight yet are trying to make a buck, too. So the field becomes one of narrow specialties whose practitioners know more and more about less and less until they know just about everything about nothing...and as Katie W. says, little that is likely to help our children.

One would think the federal government would recognize this state of affairs as the greatest public health emergency in the land. To be sure, obesity and diabetes are serious conditions that shorten lives and drive up health care costs. But at least the vast majority of people with these conditions can navigate the world independently. Half of kids with autism will never have that chance and will cost taxpayers $2-3 million each for their care. And we parents go broke seeking solutions without any help from government, most insurance, schools, and even organizations that are supposed to help, like Autism Speaks that pays their executives obscene amounts for the little they’ve accomplished.
So it’s time for national leadership to study the right things, defray costs to parents of children with autism for their care, and totally revamp how the medical community and public schools are addressing this issue. Too often these professions do more harm than good and don’t even know it. I’m waiting for our presidential candidates to lay out their respective plans to deal with this public health emergency. Hope they don’t keep us waiting too long.

Michelle Wandrack

Yah right, keep blaming the parents. Because it couldn't be our totally toxic environment. I never had a fever while pregnant with my son who has autism. Didn't' do any drugs, alcohol, ANYTHING while pregnant. Just ate healthy, no sugar or junk food period (only drank bottled water or hormone free milk), walked every day and went to all my prenatal check ups. Did not get ANY shots while pregnant. Was the healthiest I've ever been in my life. Was not "obese" while pregnant. Did not live near a freeway or have a husband of advanced age or watch television. So tell me again how it's MY fault that my son regressed into autism at 18 months. What I DID do is not question the safety of giving my son three shots at every "well child" visit at 2, 4, 6, 12, 18, ect. months ad nausium. I will never forgive myself for letting him get all those shots. Now when I see anyone with a baby, I always ask them if they follow the current vaccine schedule and if so, why. I then tell them about my son. If I can keep even one child from regressing into autism then I don't mind being labled a nosy parker or an anti vaccer. p.s. How can I be an anti vaccer when my boys have been fully vaccinated and paid the ultimate price?

Not an MD

What a complete waste of everyone's time this STUPID, WORTHLESS IMFAR meeting was. Sorry you had to endure this, Katie.

On a much more significant note, I am hoping that the work of Nobel Laureate Dr. Luc Montagnier pans out for the sake of our children. I am focusing on natural foods and supplements that kill a variety of bacteria and viruses, now. Not that the mercury and aluminum injected simultaneously and directly into my children by their ignorant pediatricians hasn't already caused irreparable harm to their brains, but if there are rogue bacteria and viruses continually wreaking havoc on my children's brains and gastrointestinal tracts in addition, I will have to get rid of the nasty germs, too. Thank God someone of Dr. Montagnier's stature cares about our children. And I thank God for Barry Segal of Focus Autism, too.


Katie W - Ditto what Adam M says - I don't think I could sit through that much discussion about nothing that will really help our kids. Kids? Mine turns 19 this July...



The truth is, everything we have ever been told about vaccines is a lie. There is no scientific proof to support the safety and/or efficacy of ANY vaccine, and there's a reason for that. They are DESIGNED to make us sick, by the very same people who make TRILLIONS selling drugs to treat symptoms of the illnesses they create.

That part of the equation is pretty easy to understand. The part most people either can't , or aren't ready to see, is that drug companies control the media. And fake public protection agencies like the FDA and the CDC. And fake advocacy groups like Autism Speaks who advocate for the study of anything BUT the causal role of vaccines. And fake research groups like INSAR, who study anything BUT the causal role of vaccines. Heck they even pay people to "troll" sites like ours, to plant seeds of doubt in the minds of people who are starting to figure it all out. Isn't that right RTContracting???

Mercury is a known immune suppressant, and I believe it remains in far more vaccines than are being led to believe. And it will definitely take more than assurances from lying FDA officials to convince me I'm wrong.

Cherry Sperlin Misra

RT Contracting, and all, I recently received the information from a good source that the FDA is allowing vaccine manufacturers to have up to 5 microgams Thimerosal in their vaccines,w ithout mentioning this on the insert. This happens to be contrary to law, but nevertheless it is happening. I would be particularly suspicious of the Hep B vaccine in this regard. Giving Hep B at birth is simply asking for trouble.
Another thing that is happening, is that manufacturers are trying their best to conceal the Thimerosal that may be in their vaccine. This is done in various ways. One method which I saw for a meningococcal vaccine was to state on the insert: "Contents, In accordance with WHO guidelines" Sounds great, but the problem is that The WHO still allows mercury. Recently I took a series of 5 vaccines for rabies and first I got two different vaccines from France, which seemed to be on the level and did not contain mercury. The last two times, I was offered an Indian made vaccine- used very commonly in India, by the way, names Rabipur, which had no insert, the package was designed to appear like the French vaccines and had the word "Chiron" on the front, which seemed to me to be French, but I noticed that there was a mention that the vaccine had to be disposed of according to some named guidelines . I think this was the give-away that it contained mercury, because mercury laden vaccines are disposed of as hazardous waste. So we are currently in a new world in which we really cannot be sure how much mercury may be in a vaccine.
I would strongly request, all persons reading AOA to take a look at the letter that Michael WAgnitz wrote to the American Academy of Pediatrics, in which he stated that he personally tested some vaccine samples and found them to contain far more mercury than had been stated on the insert.
And one last thing- As far as possible follow the policy of refusing any vaccine that does not have an insert or in which the insert does not disclose the contents (excipients).


RT Contracting:

The hospitals stopped giving the birth dose of hepB vaccine with thimerasol sometime in 2000. The rest of the hepB vaccines with thimerasol were never recalled and had expiration dates possibly into 2003.

When is somebody going to throw these jokers of worthless research into the middle of ocean and then propose a study to see if Dukin Donuts make a suitable flotation device because they look like life rings.


IMFAR... "Imagine, Money for Asinine Research"

I would guess 80% of most research money finds exactly nothing... but concludes with the need for more research and funding.


RT Contracting; one thimerosal-free Hep B shot was first introduced in late 1999, the second some time in 2000. However, existing supplies were never recalled and had a shelf life of 3 years. Providers were encouraged to continue using them until expiry, which could have been as late as 2003. Hib was on that same timeframe; DTaP and others were a bit later, I believe. They still have loads of aluminum, though...and flu vax still has thimerosal.

Felicia Ward

Kathy Blanco

Hi I read your your post about the only interesting things were a couple presentations which included maternal fetal antibodies. Can you please direct me to that information? I looked years ago for info but only could find references to down syndrome. When I was pregnant with my daughter in 1994, the first dr told me that i had elevated levels of MFA and nothing more. Then we moved from Texas to Charlotte and the new Dr said they weren't elevated any longer. But of course NC had mandated the Hep B at birth whereas Texas hadn't done that yet so she got mercury the day she was born plus every other scheduled vaccine. I even let another pediatrician give her the MMR when she was in sick AGAIN with otis media. Thank you so much in advance for any help and direction about this. Felicia W.


What a disaster!! I would be embarrassed to be a part of IMFAR at this point. Thank you Katie for shining light on what is going on. Unbelievable lack of concern for our children.

Eileen Nicole Simon

Katie, thank you for expressing outrage over the state of autism research. I also attended IMFAR, and tried to get up to the microphone as often as possible. Someone asked Dr. Bernie Devlin where he thought genetic research will be 5 years from now, and he responded “neuroscience”. I think this is where I pointed out that the first genetic disorder associated with autism was Phenylketnonuria (PKU) and it was understood in 1934, long before the structure of DNA was worked out. PKU is caused by a defective enzyme that produces an abnormal metabolite, phenyl-pyruvic acid, which is toxic to the brain.

Kathy Blanco, thanks for bringing up the iatrogenic procedure of umbilical cord clamping. Back in 2002 Dr. George Morley and I put up a poster at IMFAR on this. I recommend everyone look at Dr. Morley's website, at

RTContracting, even without mercury or aluminum, hep B is dangerous following ischemic injury and damage to the blood-brain barrier caused by clamping the cord.

Rich Krajewski

I urge more parents to engage this problem directly by studying medicine. If there is currently a lack of medical attention to what we view as the real issues behind autism, then we should seek to fill the gap ourselves.


Kathy Blanco:

I didn't think that the Hep B vaccine contained any mercury. According to this link all Hep B vaccines on the recommended schedule are thimerosal free:

Kathy Blanco

there really is no useful information that comes from these poster presentations. Only two I can think of straight up made any significant progress, one was the IMFAR presentation of Immediate Cord Clamping in Autism, and the other was Maternal Antibodies to Fetal proteins. This is the way we need to seek out the ioatragenic causes, environmental causes of autism. All the others don't help families now. The implications of those two studies are far reaching. One, that there is a maternal immune response to fetal brain proteins which would alter immune metabolic and neural function, and the fact they identified strep, lyme and mycoplasma antibodies should scream loudly mothers are infected with pathogenic bacteria that could alter neural networks before a vaccine even hit a child (and has a delay kind of affect, so you could have normal development until the vaccines come along and alter immune function). Two, that currently the way we birth our children is causing blood volume loss to the entire body, and especially the inferrior colliculus which would cause movement and speech problems. Again, a delay affect would also take place until you notice delays, but not until you vaccinate the hell out of that child causing severe oxidative stress. As well, it is well noted such clamping causes damagae to the blood brain barrier, you know, the thing that holds back metals and viruses from the brain. So what do we brainiacs do? Give a child a Hep B vaccinations with mercury within six hours of this tradgedy. Some good in the PAST has happened from IMFAR, but of late, they are rehashing old ideas and almost making sure we are never to know, what causes autism in this terrible epidemic.


About ten years ago, when my total obsession with Kawasaki was so abruptly replaced by my new obsession with autism, all the while convince for many years that it wasn't, denying that this new plague could touch us, I started reading about infections. I was pretty darn sure that my once bright eyed child, who had been potty trained, who could speak, was now a limp,droopy eyed , non verbal kid who had to sleep with me so I could change his burny diapers all night was clearly ill. . I recall these words throughout my Kawasaki searches, those same words creeped into biological studies surrounding autism, they were " reverse transcriptase". I will not pretend to have an answer or anymore than a stab at what that means, however, to me it meant dirty vaccines with retroviruses, perhaps measles, are involved in both syndromes. When Wakefield found these measle related "things", Offit was quick to report that measles was naturally occurring in the UK and no one distinguished between a vaccine type and a wild one. Time, years, and still no answers, however maybe it's a clue deserving of study. I'm tired, I'm sure we all are of the psycho babble surrounding autism, behavioral issues, the lessons learned with retro viruses and HIV should have clearly shown that the diseases can find their way to the brain. They don't start there, and likely many more children ,as in the case of my oldest son, suffer only from lifelong gastro illnesses such as crohn's. Why are they unwilling to take the next step, because it's become professional death and those such as offit are the executioners. No man should be so big that he gets published on "probably and maybe".

Terri Lewis

I love your sense of humor, Katie Wright!

The best thing about it is that people can sometimes learn when material is presented that way, as opposed to. . .well, other ways!

Thank you for educating anyone new who might come by today. There are always more of us, after all!


Wwho organized this conference? Perhaps a strongly worded letter is due.


I am so sorry money is being spent on useless information when families are desperate for insightful medical intervention. I am particularly sorry because not all parents of these children are as research oriented as you are. Most parents want to follow the conventional treatements. I know because I know some of these parents. A while back someone wrote about not "ever" getting an autistic diagnosis but simply treating medically for bowel disease, for allergies, for viral or baterial infections. That might be a good piece of advice for a parent who has a child with impacted bowel, skin rashes, and no speech at 2 years of age. Hmm. No don't seek an autistic diagnosis--treat the bowel issue, change the diet, and hope for the best. They (the powers that be) want to shove this under the rug, looks like to me.

Adam M


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