If you listened to or participated in yesterday's IACC full committee conference, please share your POV/analysis in the comments here at AofA. IACC voted AGAINST including the words immunizations or vaccines in the strategic plan despite the link to immune response in ASD. Many of us have already had our children. Elvis has left the building. And wella, wella, wella now we have a lifetime to try to help our vaccine injured kids. But our kids have siblings, younger parents are still having babies and there are generations to come - babies who have been damned by Dr. Tom Insel.
Thank you to those who participated and did their best on behalf of our kids. Katie Wright has summarized previous IACC meetings for us. Her write up from the November 2013 meeting is below. We'll have further review of yesterday's meetings soon.
By Katie Wright
Thank you to Lisa Ackerman for her recent post on the last IACC meeting, she inspired me to get my act together and finish this.
I have fallen behind because my son Christian has started developing grand mal seizures and must now be watched every minute of the day. I also have to stay on top of his twice-monthly IVIG sessions. We are waging a battle royale for insurance coverage, but it is infinitely worth it because Christian’s autism is thoroughly and completely immune mediated. That is why I found this meeting particularly infuriating, but more on that later.
OK, so our story begins at the NIH, in a jam-packed committee room filled with about 30 people, maybe 1 or 2 actual parents of someone with autism. There are 3 IACC members with very, very, very HF aspergers. The rest of the special committee are comprised of geneticists, brain imagers, psychologists and a few odds and ends. So there you go: the autism research Stone Age. Am I giving away the whole story already?
The group was to first discuss question #1 of the Strategic Report, “When Should I be Concerned?” Frankly, I have no idea why they even need to ask this question in 2014! We really, really, really know the signs of autism now. There are over 11,000 studies on the signs of autism and probably just as many on the importance of early intervention.
Thank you to Dr. Paul Wang of Autism Speaks for pointing out that we have plenty of “learn the signs of autism” research. Dr. Wang stated that the real problem is dissemination- in my view this means getting pediatricians and associated child health workers to actually read the studies.
There was also a tremendous amount of self-congratulations about the progress in brain imaging research. Newsflash, toddlers with autism have big heads! It is called brain inflammation people.
I mean it was unbearable. Dr. Karen Pierce, brain imaging specialist, monopolized so much of the discussion with arcane and irrelevant MRI stats. Dr. Pierce was deaf to all imaginable concerns except her own. At one point Idil Abdul asked a poignant question about why son never slept through the night and how hard this was. Not allowing anyone else to give an actual answer Dr. Pierce jumped right in and started spouting lengthy and completely unrelated brain size statistics to Idil. More non-help from the “experts." Thankfully Lyn Redwood snuck in an aside about GI pain (in the form of reflux or food allergies) often being the trigger of night wakefulness.
Do you know there are already 1,600 published studies on brain imaging and autism? Additionally there are 1,000 more in the pipeline. Consumers and taxpayers must demand and end to brain imaging insanity. Studying the brain in isolation of all environmental factors is getting us n-o-w-h-e-r-e.
So many of our kids are suffering with Pediatric Autoimmune Neuro-Psychiatric Disorder and parents are on their own to figure out treatment. How about studying PANDAS? Guess how many PANDAS/autism studies there are? FOUR. Most autistic kids show mild to severe autoimmune abnormalities. If we had research on actual treatments interventions to help these 100,000s ASD people, they would not be sick all the time. Guess how many studies there are on autism and autoimmune interventions? FOUR. Approximately 25-50% of ASD people suffer, daily, with GI disease. Guess how many autism/ GI treatment studies there are? 24.
Why on earth were there 10 brain imagers working on the NIH Strategic Plan for Autism Research? Why 10 geneticists? One or two of each would have sufficed. Yet there was not 1 GI expert at that table? Not 1 expert on the issue affecting almost half of people with autism, yet 10 MRI researchers? Why was there just 1 environmental scientist on this committee? And why was that person on the phone? There are dozens of top quality ASD environmental scientists, at least 2 should have been sitting at that table.
Ok on to the second question, “How Can I Understand What is Happening?”
Dr. Walter Koroshetz is my hero! Dr. Koroshetz is the Deputy Director of the National Institute of Neurological Disorders. He gave the best, most comprehensive, most thoughtful answer to a Strategic Plan question. In fact, Dr. Koroshtez gave the best overview of question two ever. Phenomenal! Dr. K spoke about the importance of studying immune and metabolic markers, oxidative stress and regression! Dr. K advocated researching associated biomedical treatments asap. Actual NEW ideas at IACC, NEW ideas for the Strategic Plan! I was riveted; in fact I backed up the video to hear this twice.
Dr. K, I love this guy, also spoke frankly about the problem of over-promising in the area of genetic and genomic research. Thank God someone at the NIH has the courage to address this. I don’t know about you but every time I read a study that promises, “genetic therapy” or “genomic scans for all” (as if that is the answer?) or “breakthroughs in Retts Disease than will uncover the cases of autism” I want to throw my computer out the window.
The large fortune of our tax money spent on Fragile X research has not translated to any breakthroughs for the other 95% of people with autism. We have got to move on.
While Dr. Koroshetz’ presentation was a wonderful surprise the comments of “special guest” Dr. Carolos Pardo – Villanizar were dreadful. Who invited this guy? Dr. Pardo is an MS specialist at John Hopkins. God knows, IACC needed to invite an immunologist (especially if they were inviting 10 psychologists to the meeting), but why this guy? Pardo’s last real autism paper was published 8 years ago. There are dozens of cutting edge ASD/ immune system researchers: Jynounchi, Toruner, Ashwood, Geng, Quraishi, Ashwood…..For heaven’s sake why invite an MS specialist to serve as an autism expert when there is so much real talent available?
Incredibly, get ready for this people, Dr. Pardo starts out by basically saying that the autoimmune connection to autism is no big deal. Based upon his extensive experience with MS science (I suppose) Pardo firmly believes ASD is not immune mediated. At the very moment I was listening to these asinine comments I was sitting next to Christian as he received his IVIG. He used to be so sick and miserable all the time but IVIG changed everything for him.
I mean where did IACC get this guy? I get the sense Dr. Pardo is a contrarian guy who, apparently, has purposely not read ANY autism-immune system literature in the past 8 yrs.
Then Dr. Pardo goes on the red herring tangent about how autism is all prenatal and the only immune issue we need concern ourselves with is prenatal infections. Ah, those prenatal infections! The crux of all that is bad! Those ubiquitous prenatal infections, the cause of all autism! Yet where exactly is evidence of this epidemic of maternal infections? I mean, really, this is an absurd argument. We are not in the midst of an epidemic of toxic pregnancies (however convenient that would be to imperceptive people like Pardos).
Clearly what is actually happening is that pregnant women with suboptimal immune systems give birth to babies who are also more genetically susceptible to infections/ assaults on their immune systems. 30 yrs ago this would be no big deal. People get sick, they get over it. But what is different now is that these high risk infants are immediately (and I mean immediately – hrs after birth) vaccinated for a disease only prostitutes have, Hep B. I know, so crazy, you just could not make this up. Before they reach age two, these infants are virtually carpet bombed with vaccines, 35 more vaccines before they reach the age of 2. Every vaccine challenges their already fragile immune system until disaster. This is often the cause of regression….
I cannot listen anymore right now, I have to pace myself to protect my sanity. Part 2 coming up soon!