This SEED Grows Precious Little for Autism and is a Budget Boondoggle
Note: Thank you to Katie Wright for slogging through IACC's meetings. How she does it we'll never know! The Next IACC meeting is January 17th.
By Katie Wright
The 11/17 Inter-Agency Autism Committee meeting began with the CDC’s presentation on SEED, their autism “research” program. That’s right, laughs front loaded at this show. Over the past 14 yrs SEED has spent approx. $10 million and has published about 5 autism studies. The sad, sad (and I mean that in terms of value to the ASD community) research they presented yesterday was in exercise in irrelevance, govt. waste and amateurism. Throughout the bizarre presentation and even after some tough questioning, SEED Dir Dr. Stuart Shapira appeared inexplicably pleased with himself. Impossible to fathom why that was.
OK let’s start with SEED researcher Dr. Ann Reynolds. The fact that Reynolds’ presentation was on ASD/ GI science made me hopeful. I thought “Great! Finally the CDC is focusing on helping this underserved sub population.” Oh, no! I could not have been more wrong. Reynolds presented the umpteenth study merely showing that GI disease IS indeed a problem for ASD people.
Newsflash, right? Sydney Feingold did this better in his 2002 study with 1/100th the budget. The Reynolds study is lazy and unfocused. Dr. Reynolds herself seemed strangely unfamiliar with the material she was presenting, as if it were her first time seeing it. I’m not kidding. The SEED team is so inept and apathetic they gave up on collecting the research participants’ medical records “because it was too difficult.” The medical records of ASD/ GI kids is the biggest key to unraveling this issue. These children have a significant pattern of chronic infections, illness and adverse vaccine reactions prior to the onset of the ASD/ GI disease. SEED has access to ALL this precious data but choose not to work hard and to give up. So pathetic and inexcusable. Reynolds and the whole SEED team presented their information as if they were describing a sunny day in California. Reynolds had zero affect and expressed zero concern for the autistic kids living with terrible and chronic GI pain. She explained that the “treatment” for ASD/ GI disease was laxatives. What is this 1990? Even CHOP doctors state that children's’ laxatives contain a dangerous amount of arsenic and should be used sparingly, NEVER as ongoing treatment.
Why is such amateur hour leadership tolerated regarding critical medical treatment for children with developmental difficulties? How is it even possible that these doctors know so little about ASD / GI issues and offer virtually no real treatment to these suffering, disabled, young people? Untreated GI issues can lead to a refusal to eat, self injurious behavior, inability to attend to therapy, sleeplessness, constant irritability, etc. Inexplicably, Dr. Reynolds seemed totally oblivious to the seriousness of this condition. Just for starters why didn’t the SEED GI study test for IgE and IgG antibodies regarding food allergies? Why not place kids on Specific Carb Diet for 2 months and see if symptoms abate? The diet is so healthy! Fermented foods and healthy fats are much easier to digest than gluten or casein. Instead of arsenic containing laxatives try “smooth move” tea, prunes, lots of water- anything. Extra Vit D exposure and exercise are also healthy and safe ways to deal with chronic constipation. Sometimes anti inflammatories are necessary and any good pediatric GI should know this.
The next SEED presentation was on facial dysmorphology. I’m serious! Yes, just the subject all our families want studied! There could not be a more useless more foolish waste of resources. SEED is supposed to be about researching biological and environmental origins of autism. Since when does dysmorphology have anything to do with autism? Shapira presented a tedious and irrelevant lecture about people with various severe chromosomal abnormalities and facial dysmorphia. It amazed me that even after the abject failure of hundreds of millions of ASD research dollars in FragileX, Retts and Tuberous Sclerosis models of autism, that the CDC keeps moving straight into this dead-end. Thurman (from the NIH!), McDuffies, Abbeduto, Roberts and many more, have done numerous studies demonstrating that these chromosomal conditions are very different from non syndromic autism and do NOT yield valuable science. Most of these children receive an ASD diagnosis if the parents request one, yet few fit DSM parameters of autism.
It appalls me that Dr. Shapira (a geneticist) feels entitled to take precious autism research dollars and spend this money on a banal pet interest rather thaninvest that money towards urgent scientific priorities. It’s so disrespectful to people with autism, our families and the tax payer. Shapira’s research adds nothing, helps no one. The life expectancy for people with autism is about 55, 50% of ASD people suffer from seizures, 25% of ASD people engage in severe self injurious behavior. But what is Dr. Shapira’s research priority for autism? Facial dysmorphia! Shapira needs to be fired.
Finally, Dr. Dani Fallin presented SEED research on fevers during pregnancy. 60% of all pregnant women experience a fever while pregnant. About 1% of that group have a child with autism. No pregnant women wants a fever, no pregnant tries to contract a fever, so right away this study is of no actionable value. Fallin states the risk of autism among pregnant women with fevers is verysmall and only apparent in second trimester. Of course it is! The prenatal fever is the small part of a dynamic process! It only sets the stage for the real damage, which occurs postnatally.
How could Fallin fail to connect prenatal fevers with the infants and toddlers who suffer from chronic infections and illnesses and then regress into autism? There is SO much great literature on this. These infants are at the highest risk for regressive autism. What happens after infants are given the standard 5 to 7 vaccines at their 2nd, 4th, 6th and 12-month appointments? Fevers! Virtually all these at-risk babies experience high fevers and have the highest rate of post vaccination febrile seizures. They should never be given Tylenol (which depletes glutathione) and they should receive a slower and more spread out vaccine schedule. There is a treasure trove of actionable science regarding postnatal fevers and autism. Why does SEED only study the least important part?
Thanks to community representative John Elder Robison for pointing that people affected by autism desperately need actionable science. He spoke about need for science to help prevent disabling aspects of autism or science that fosters treatment.
Nothing the SEED presented offers any value to our families or the taxpayer. Pregnant women already know not to acquire fevers and everyone in the field know that GI disorders occur at a very high rate among ASD people. Giving the ASD public this information is not a $10 million + value.
SEED should be shut down. The leadership of SEED should be fired. SEED’s budget should be directed toward research on POSTnatal environmental triggers, with an eye towards preventing regressive autism.
Katie Wright is a Contributing Editor to Age of Autism.
Thank you Maurine!
So true
Posted by: L Land | January 06, 2018 at 11:11 PM
The IACC, SEED, NIH, CDC are all wasting millions of dollars on useless autism research if you can call it that. They are a sham and have done nothing in the past 30 years to find the real answers to this tragic and growing epidemic now at 1 in 36. Our children are suffering from a major medical pandemic that is affecting their immune and neurological systems. We need real, constructive research into how to reverse and correct the disabling condition our children are suffering from. These government agencies are callous and show a total disregard for the suffering we and our children have endured all these years. President Trump what happened to draining the government swamp and putting real researchers in these government agencies to finally stop the AUTISM EPIDEMIC!
Posted by: Gayle | January 06, 2018 at 07:43 PM
Benedetta,
Its certainly possible as I read it because under the budget cuts to the NIH there were proposals to close the Fogarty Institute and presumably all that they run and manage..I think the IACC is managed by them heres hoping.So far as I am concerned most of the helpful stuff on autism hasnt come out of any autism gov funding-zero springs to mind. If it was out of the way it might allow the real useful Autism help to come out into the real Autism Paradigm..
https://www.washingtonpost.com/national/health-science/nih-would-see-huge-budget-cut-under-presidents-proposal/2017/03/15/8b6345cc-099e-11e7-93dc-00f9bdd74ed1_story.html?utm_term=.fe80a6fa0708
Pharma For Prison
MMR RIP
Posted by: Angus Files | January 06, 2018 at 08:12 AM
So, Angus; will IACC go away with the so much loss in funding?
Posted by: Benedetta | January 05, 2018 at 11:25 PM
Katie;
Attending these meetings.
Watching these meetings.
Are detrimental to your health.
A mother of a vaccine injured child should not have to endure; the frustration.
It is unfair to make yourself sit in that seat, and resist the desire time after time to wring with your very own pretty hands those voice boxes that bobble up and down in the necks of these guys ruining the IACC meetings. Oh, did I say ruining instead of running? Such self denial l as you are doing Kate l can lead to health problems.
That said; I appreciate you doing this and then informing me and others.
Posted by: Benedetta | January 05, 2018 at 11:17 PM
Great article Katie and many thanks for this.I agree with Laura about vaccines I haven't seen a safe one.
I think Afghanistan and vaccines are the only promises Trump still has to deliver on, just about everything else is on its way! to much to list.
The swamp dollars are being drained and its only the 5th of January 2018.The FDA and the CDC are taking big hits in budgets this year.So how does it feel at the CDC just now after having $1.2 BILLION snatched away from it and 80% of it is vaccine related.Good old Bill Gates had fruitless meetings at the CDC a couple of weeks ago to see how he could make up the shortfall seemingly he was more or less booted out the door.
"The entire budget was also written under two assumptions that are likely to reduce vaccination rates: the end of the Prevention and Public Health Fund after 2018, which funds thousands of immunization programs nationwide, and the repeal of the Affordable Care Act, which includes Medicaid rollbacks that could hinder vaccine access."
https://www.statnews.com/2017/05/24/trump-public-health/
Pharma for Prison
MMR RIP
Posted by: Angus Files | January 05, 2018 at 06:47 PM
Facial dysmorphology was being studied ten years ago. Again, a group led by geneticists, and again, a total waste of resources. Seems like another attempt at "deflect, deceive and deny until they die." Here's a blurb on a website that's genetics focused "Despite a large number of studies trying to identify genes important in autism, none have been conclusively identified to date that affect a large proportion of cases, although there have been promising findings and there are some cases where the gene or chromosome regions have been identified." Sounds like a blind alley to me!
Posted by: Peter Miles | January 05, 2018 at 05:11 PM
Isn't SEED the program Dr. William Thompson was discussing with Dr. Brian Hooker in the phone recordings Dr. Hooker made:
"We have 800 kids with autism that have been given the ADI and the ADOS. So, they've all been given these instruments, all confirmed cases of autism. Um, we have population controls of similar size and we have disability controls of similar size. ... and there is going to be more data available. We're going to have twelve hundred kids with autism as part of this um study, with all their medical records and all their vaccine records abstracted. ... So far there is about sixty proposals in for people ready to do studies. Not a single one of them looks at vaccines, not one! So, well I ripped into these people this week. ...'These vaccine studies have to be done. This is the largest case control you could ever do... What are you going to say when you have twelve hundred autism cases and a bunch of controls and you never look at vaccines and you have all their vaccine records?'...'And we have all their prenatals, we have all the prenatal stuff...' ...I told them, 'This study needs to be done.' ... 'It should be contracted out to some independent organization...Groups like Safeminds should be included' ... CDC not even touch it, not even have a coauthor on it..."
How to you become complicit in child torture and worse? Just accept government funds? How do you get roped into going further and carrying out the torture and worse? Just join a group motivated by a mantras like "saving lives... protecting people" believing your career to somehow be your sacrosanct identity? And keeping your blinders on in a painfully tight way and/or your brain locked irrationally into rationalization auto-pilot, not knowing whose agendas you are really directed by?
Posted by: Jeannette Bishop | January 05, 2018 at 02:28 PM
How long are they going to get away with this nonsense?
Posted by: Linda1 | January 05, 2018 at 01:19 PM
I agree with Maurine Meleck... while I do believe Trump knows that vaccines cause autism, the likelyhood that he will do anything about it is none. He is a con man who has showed time and again that he won’t “drain the swamp” but instead fill it with even worse swamp creatures. Time to abandon hope of help from the president. His choices to run the CDC and the HHS clearly show he has no interest in changing anything for the better in either of these revolting places
Posted by: Jordan | January 05, 2018 at 12:27 PM
I agree with Sharon Kistler...send to Pres. Trump and demand the shutdown of SEED and a full investigation. This "news on their latest research" is absolute baloney and a waste of our tax dollars. My son is now 18 and we've come a l-o-n-g way in helping him BUT he still needs 1:1 supervision-24/7 and will for the rest of his life - who is going to pay for that? Too many "shelters/homes" for adults with Autism are supervised by those who want to sit and just get paid to babysit. My son needs more outlets than just sitting in front of a TV and isolation.
Posted by: Warrior Mom | January 05, 2018 at 11:07 AM
If anyone is still waiting for Trump to lead us out of the wilderness, it's time to restock your backpack with plenty of food, water and clothing because inhabiting Mars will come sooner. How easily we belie we believe in false promises. Stopping the autism epidemic-not likely. Healing one child at a time-more likely. Thank you, Katie, for focusing your camera on pure evil.
Maurine
Posted by: Maurine Meleck | January 05, 2018 at 10:36 AM
Katie,
Thank you for yet another recap of how our government and its minions continue to piss away our tax dollars and knowingly permit the Vaccine Holocaust to continue and escalate unabated. Judgement Day awaits each of us, and they will have to answer for how they aided and abetted the vaccine poisoning of nearly every child on the planet during their tenure, and for how they turned a blind eye to the associated suffering endured.
I did take great exception to one statement you wrote:
"They should never be given Tylenol (which depletes glutathione) and they should receive a slower and more spread out vaccine schedule."
No child should be subjected to, poisoned by, made chronically ill by, made permanently disabled by, have their DNA altered by, their bodily systems weakened and destroyed by, their brain damaged by, and their lives prematurely ended by any vaccine, as not one has ever been proven to be safe, effective, or needed. Furthermore, not one has been tested approoriately, nor have the myriad, arbitrary, haphazard, and reckless combinations in which they are administered been tested appropriately, either.
For a comprehensive elaboration on why no child should be subjected to even one vaccine, please watch and share my WAPF presentation from November, 2016. Video and transcript here:
"Vaccines: What Is There to Be 'Pro' About?" by Laura Hayes
http://www.ageofautism.com/2016/12/vaccines-what-is-there-to-be-pro-about-laura-hayes-to-weston-a-price-foundation-conference.html
I very much appreciate your continued work, perseverance, and dedication to helping children, and now millions of young adults, with "autism", and their families, Katie. Please keep your recaps coming, as you are documenting the vaccine carnage and subsequent cover-up, which needs to be done.
Posted by: Laura Hayes | January 05, 2018 at 10:22 AM
When Mr. Trump was elected, several newspapers reported that many CDC employees cried. For good reason, they were afraid for their jobs. That's what should happen when people conduct fake or lazy or irrelevant science, or alter data to get the result they wanted, cover it up, and torment legitimate whistleblowers with character assassination. Somehow regardless of what they produce these dishonest cynical bureaucrats still get paid. Time to drain the swamp, Mr. President, as you promised during the campaign and upon taking office.
And another thing. When 1 in 38 children in this country are on the autism spectrum with the rate increasing each year, isn't it about time to declare autism a public health emergency? Apparently, the leadership at HHS isn't up to the job. Time to replace them with appointees who will clean house and get something done for the hundreds of thousands of families who bear the emotional and financial costs of caring for these children, many well into adulthood.
Posted by: Barry Stern | January 05, 2018 at 09:31 AM
dysmorphology?
As long as they can find big words; perhaps they can continue with this waste and dead ends?
Posted by: Benedetta | January 05, 2018 at 09:08 AM
UP-PGH to review deaths of 14 kids vaccinated with Dengvaxia
14 children dead so far ..... and a $2000 fine .
Surprised , no I am not , welcome to the crime of vaccination .
Posted by: Hans Litten | January 05, 2018 at 08:09 AM
Katie - Please copy this to President Trump and ask him to eliminate funding for this mock agency and eliminate it. Wow, how to go backwards 25 years with 10 million dollars.
Posted by: Sharon Kistler | January 05, 2018 at 08:07 AM
Hans
Katie does not hold a position with the IACC. Of course, you might write yourself. But as we know the IACC decided to stop hearing evidence from citizens last year.
Posted by: John Stone | January 05, 2018 at 06:48 AM
Katie asks:
Why is such amateur hour leadership tolerated regarding critical medical treatment for children with developmental difficulties?
"Amateur hour leadership" is not only "tolerated" .. it is PREFERRED .. as evidenced by the absolute failure of the Inter-Agency Autism Committee .. after 14 years and spending approx. $10 MILLION .. having produced what Katie aptly describes as "sad, sad (in terms of value to the ASD community) research .. continuing their historical tradition of being "irrelevant" .. a prime example of "government waste and amateurism".
Katie further asks:
How is it even possible that these doctors know so little about ASD / GI issues and offer virtually no real treatment to these suffering, disabled, young people?
I suspect it is "possible" for these doctors to "know so little about ASD/GI issues" .. because .. THEY ARE NEVER HELD ACCOUNTABLE FOR THE "SAD RESEARCH" THEY HAVE PRODUCE .. OVER FOURTEEN YEARS .. NOR .. THE MILLIONS OF DOLLARS SQUANDERED THROUGH "GOVERNMENT WASTE AND AMATEURISM"
Katie recommends .. "SEED should be shut down. The leadership of SEED should be fired"
Unfortunately .. again using history as my guide .. NEITHER of Katie's justifiable recommendations will be implemented .. and so ...
THE BAND PLAYS ON AND ON .. ON AND ON ...
Posted by: bob moffit | January 05, 2018 at 06:38 AM
Katie Wright , can you please make sure the IACC knows that parents like me are accusing them of genocide now. They need to know, every last one of them.
Same message for all the other collaborators.
Posted by: Hans Litten | January 05, 2018 at 06:20 AM