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Katie Wright on Autism Speaks Gastrointestinal Research Project

Stomach_ache By Katie Wright

Autism Speaks recently awarded two highly qualified, innovative and independent scientists $1.3 million towards a huge ASD/ gastrointestinal research project (HERE). Thank you Autism Speaks and Dr. Geri Dawson for making this project happen.

This grant is significant for a number of reasons. Children belonging to this ASD subset have been hugely underrepresented in autism research. Many of these children live with acute pain. If addressing acute pain isn’t a high priority what is? Hundreds of thousands of families caring for ASD children with debilitating GI disease want this research done. The days when parents have only the Internet as their main source of GI treatment information must end. It is time for environmentally induced regressions and GI disease to be a top research priority. Endless eye gazing and brain imaging research needs to move to the back of the line.

Rather than fund a few token GI grants for $60- $100k, AS made a real commitment to this issue by awarding Dr. Fasano and Dr. Ashwood $1.3 million towards a ground-breaking GI research project.  From any perspective this is a tremendous amount of money.

Years and years of hammering home the importance of this research went on behind the scenes in order to make this project happen. Nothing comes easy with GI research. There are few really excellent researchers working on this problem and it is exceedingly difficult for them to receive funding and get published. Too many public and private research organizations are afraid of where this research will lead and therefore, avoid it all together. Too many academics are totally unfamiliar with these children, preferring to more safely focus on the behavioral, rather than medical and environmental aspects of autism. This is a shameful reality.

So thank you again to Bob and Suzanne Wright and Dr. Geri Dawson for getting this critically important work funded. I know it was not easy.

Now to Dr. Fasano and Dr. Ashwood, we want you working harder on this project than anything else you worked on in your life. We want you thinking about our kids every day as you try to produce the most perfect study imaginable. A million families are relying on you to deliver. We will not another chance like this anytime soon.

Those who read my posts know I am not shy to criticize those who funded and or executed subpar research. This biomedical project must set a new standard for excellence. So many dinosaurs in the field will be looking to discredit this work and we cannot give them any ammunition. So Dr. Fasano and Dr. Ashwood thank you again for bravely taking GI/ASD research on and now get to work.

Comments

barbaraj

I feel I need to have an open "listen to mom" dialogue with these researchers. Pack a lunch, tie your shoes, remember that ibd IS associated with early infection with measles..not a great leap to consider infant injection as early exposure..wash your hands, drive safely!

barbaraj

I don't want to "say" much, or "think" too much about the study. I hope that it's uncovered that often mmr leads to ibd. There will likely be a "small"subset of ibd patients that have autism. HOWEVER among those with ASD will be the overrepresention of IBD. There is no small subset with gi disease, it's the prevalent and overlooked systemic part of autism. But just in saying that, I can see how it could be misrepresented, and twisted, with numbers to be used to play the pharm game..ex...10 percent of all vaccinated children have ibd...80 percent of all autistic children have ibd..suggesting that 1 in 10 children are affected with ibd..and less than 1 in 100 children have autism with ibd. I'm guessing that looks like almost ten times more kids don't get asd with ibd? No scarier than the danish study..or the japanese ones..same twisted numbers..

Sarah

I hope this GI study acutally involves physically scoping the kids, looking at stool samples etc. So many studies just rely on old computer data or have parents fill out a questionaire which I think is useless.


Here a good autism-GI study done in 1999:

Gastrointestinal abnormalities in children with autistic disorder. Department of Pediatrics, University of Maryland School of Medicine, Baltimore, USA.

Abstract
OBJECTIVES: Our aim was to evaluate the structure and function of the upper gastrointestinal tract in a group of patients with autism who had gastrointestinal symptoms.

STUDY DESIGN: Thirty-six children (age: 5.7 +/- 2 years, mean +/- SD) with autistic disorder underwent upper gastrointestinal endoscopy with biopsies, intestinal and pancreatic enzyme analyses, and bacterial and fungal cultures. The most frequent gastrointestinal complaints were chronic diarrhea, gaseousness, and abdominal discomfort and distension.

RESULTS: Histologic examination in these 36 children revealed grade I or II reflux esophagitis in 25 (69.4%), chronic gastritis in 15, and chronic duodenitis in 24. The number of Paneth's cells in the duodenal crypts was significantly elevated in autistic children compared with non-autistic control subjects. Low intestinal carbohydrate digestive enzyme activity was reported in 21 children (58.3%), although there was no abnormality found in pancreatic function. Seventy-five percent of the autistic children (27/36) had an increased pancreatico-biliary fluid output after intravenous secretin administration. Nineteen of the 21 patients with diarrhea had significantly higher fluid output than those without diarrhea.

CONCLUSIONS: Unrecognized gastrointestinal disorders, especially reflux esophagitis and disaccharide malabsorption, may contribute to the behavioral problems of the non-verbal autistic patients. The observed increase in pancreatico-biliary secretion after secretin infusion suggests an upregulation of secretin receptors in the pancreas and liver. Further studies are required to determine the possible association between the brain and gastrointestinal dysfunctions in children with autistic disorder.

http://www.ncbi.nlm.nih.gov/pubmed/10547242

Kristen

This is in response to Darrin ("My 11 year-old son has Autism (PDD-NOS) and was recently diagnosed with Crohn's disease. Any insight as to the prevalence of this within kids with Autism would be of interest as well as personal experiences (treatment, diet, etc.)."

Try looking at the book "Breaking the Vicious Cycle" by Elaine Gottschall; she designed the specific carbohydrate diet which is the focus of that book for Crohn's patients. I hate to go into too many details, but our son had horrific stomach problems and after six weeks on that diet, his bowels were normal.

thanks Twyla

Very, very well stated, and worth repeating:

re: 'you guys need to argue behind closed doors and present a unified front when asking for funding and supports.'

"If we have to wait for Ari Ne'eman and Allison Singer to agree with us on this, that will be after hell freezes over. To condition action on getting everyone's agreement is just an excuse for inaction.

Yes, it's great to cooperate on subjects we can all agree on. But that doesn't mean we'll drop advocating for studying the root causes and treatments for autism.

It's as if the govt told several ethnic groups with diverse needs and priorities, "We'll only address what you all have in common, so find a common denominator."

Twyla

It is interesting that this money is granted as a "Suzanne and Bob Wright Trailblazer Award" and that "Autism Speaks recently launched its Trailblazer Awards to support highly novel 'out of the box' autism-relevant research." For years we wondered why the founders of AS did not have more power to influence funding of studies. Decisions were made by a scientific board with a lot of members who had formerly been with NAAR (until NAAR and AS merged) and who believed in the old-fashioned purely genes/brain paradigm of autism -- you know, where defective genes cause defective "wiring" in the brain. (Are the brain's wires made out of copper or aluminum?)

Apparently these "Trailblazer Awards" are a way to add in some research on other stuff, like stuff relating to the biomedical paradigm of autism. Here is an interview with one of the researchers:
http://blog.autismspeaks.org/2011/04/14/new-trailblazer-awardee-answers-questions-about-gi-and-autism/
A couple of quotes:
"ASD is comprised of a mixed bag of different cases that share the behavioral description typical of ASD. In other words, ASD might be the 'final destination,' but the route to get there can vary from individual to individual. Some children may reach their ASD destination through the 'GI route,' meaning that it is possible that their GI disorders can lead to ASD in genetically susceptible individuals. By studying GI disorders specifically in children with ASD, we are not simply trying to develop methods for a better management of GI symptoms. Rather, we have a much more ambitious goal: We are trying to understand the underlying physiology of ASD; we are trying to 'walk the same route' that these children took to arrive at their ASD 'final destination.' By doing so, we hope to help them turn around and walk back from that ASD destination."

"We believe that a few things are key ingredients of the ASD recipe: 1) Genetic predisposition (as suggested by twin studies); 2) Environmental triggers (nutrients, metals, additives, oxidants, to name just a few); and 3) An impaired gut barrier (leaky gut)."

Three cheers for Autism Speaks, and may these studies result in some helpful discoveries.

Twyla

Dadvocate said, "One message the AofA folks need to hear (and may not want to) came directly from the Administration and was directed to everyone in the room, from Ari Ne'eman of ASAN and Allison Singer from ASF to Safe Minds, Autism Speaks, ASA and all the Agency, research, and clinical folks. Simply stated it was, 'you guys need to argue behind closed doors and present a unified front when asking for funding and supports.' ...the Administration thinks... that the public bomb throwing, however justified the hurler feels, hurts the chances of getting meaningful legislation passed and policy enacted, even on adult issues like employment, housing, and safety that should be a slam dunk. Legislators and policy makers loathe the prospect of ticking off one advocacy group by supporting another. Inaction is their default position."

While to some extent I see your point, and I do prefer constructive dialogue to hurling bombs, the fact is the federal government has a responsibility to address problems with our vaccine program, and specifically vaccine-induced autism. If we have to wait for Ari Ne'eman and Allison Singer to agree with us on this, that will be after hell freezes over. To condition action on getting everyone's agreement is just an excuse for inaction.

Yes, it's great to cooperate on subjects we can all agree on. But that doesn't mean we'll drop advocating for studying the root causes and treatments for autism.

It's as if the govt told several ethnic groups with diverse needs and priorities, "We'll only address what you all have in common, so find a common denominator."

cmo

I would suppose this research would involve procedures to test the children similar to what was done at the Royal Free Hospital in England 15 years ago with several hundred children... This went well until it was decided that common procedures trying to locate any GI problems were too invasive... 6 or 7 years after they were done.

Who knows what the the AS research might find ??? a new bacteria, vaccine measles virus growing on the GI track ??? Depending on how the testing is done and

"who decides" what tests to throw out.... they could find issues similar to the 1998 Royal Free or nothing at all.

Of course to secure further funding you have to "simply show not much" and that you are on the right track...

tiredmom

I want to believe that good things will come of this that will help our children. I would really love it if new, very effective low-risk treatments would come out of this that could really help a bunch of kids like my son who is still suffering despite everything we have tried. It would be nice if a parents from the trenches with a stake in this were on a committee overseeing the research projects to make sure they were focussed on helping the children. Maybe they would let Katie Wright do this? Will Thoughtful House be given any of the money? It would be good if it were given to many people so that many minds could be working to help our kids and all the subgroups. I just don't want it all given to Autism Speak scientists. Autism is so very much a gastrointestinal disorder with so many kids suffering. Something good has to come of this for our kids!

Kristine

John Stone said: What I would also caution against in this research is trying too broad an approach, when one child might benefit from one therapy and another from another. If you look for some kind of Evidenced Based Medicine approach which benefits all cases we already know that we will probably only get inconclusive and rather unhelpful results. You can always dilute real benefits and make them insignificant that way.


EXACTLY my thoughts. If we continue to have studies that do not identify subtypes then we will always be chasing our tails. If you take X amount of children with "autism" and test Y treatment (be it GFCF, chelation, even prozac) then you will continually get negative results. What did their labs say? Do they have GI symptoms? Did they regress? Do they have obsessive-compulsive behaviors? Do they have speech? ETC.. Some of the studies I have participated in didn't even distinguish functioning levels, they just used this broad meaningless term of "autism". Subtypes. Subtypes. Subtypes!

Darren

My 11 year-old son has Autism (PDD-NOS) and was recently diagnosed with Crohn's disease. Any insight as to the prevalence of this within kids with Autism would be of interest as well as personal experiences (treatment, diet, etc.).

I cannot even imagine how difficult this was to even propose

I live in the epicenter of hell; I cannot even imagine how difficult this was even to propose.

Guys, please, please remember that Autism Speaks is not the Wright's personal fiefdom, nor Dr. Dawson's. There are all sorts of boards and committees to go through, otherwise the research would have no validity (let alone the influence of the politics of outside groups).

In Katie's words, "thank you to Bob and Suzanne Wright and Dr. Geri Dawson for getting this critically important work funded. I know it was not easy."

And a HUGE thank you to you Katie. Thank you for being our selfless and public eyes and ears.

Barry

I'm sorry but if Autism Speaks is funding this kind of research, then that is dreadful news.

Because Autism Speaks is nothing more than an insidious front organization for big pharma. I don't have a crystal ball, but I don't really need one to predict how this is going to end.

It’ll take a few years, since some time will need to have passed to make their efforts appear legitimate. But I can guarantee that when the results of these "studies" emerge, it will be an unmitigated media frenzy, and every main stream media outlet will be trumpeting the results. Our efforts to bring attention to our children’s GI issues will have been for not, because these studies will no doubt declare that "No link can be found" between Autism, vaccines and debilitating GI issues.

I don’t need someone to embark on yet another study, so that in 5 years they can either tell me what I already know...or that I don’t know anything at all. I know that vaccines caused my sons autism, complete with allergies, heavy metal toxicity, devastating GI issues... etc. And in a perfect world, I would love to see someone held accountable for what was done to him. But I know that we don’t live in a perfect world, and right now I just want to see someone put an end to this vaccine madness.

Oy Ve

I think this is great, kudos to the fighters, but I have a hard time understanding why this should be an uphill battle within AS. If the founders and the chief science officer want an obviously important study done, one which has precedent and a demonstrated need within the community of sick children, it should be done, right? Who exactly is saying no to them, and why? Did Alison Singer leave some minions behind? I certainly hope that whoever they are they won't be in a position to put their fingers on this study as it moves forward.

JB Handley

I have hear Dadvocate's argument many times. That our community is too fractured and there's too much vitriol, and it causes lawmakers and public health officials to run for the hills. On a level, they are all absolutely right.

The problem is that a large portion of the parent community is accusing the government of causing the autism epidemic, so a huge fight is simple inevitable, there is too much at stake.

We simply need private organizations like Autism Speaks to stand up to the heat and sponsor well-done science to get us real answers for how we help all these suffering kids.

The government will be the last place to help us in this fight, perhaps better just to accept that reality. JB

Donna L.

I'm all for ANY research which will force mainstream doctors, not to mention therapists, educators, etc., to stop ignoring the fact that so many of our kids are in GI distress. Any step toward this goal is a step in the right direction...and a step away from those damn utterly useless eye gazing pieces of crap (er, studies).
Thank you Katie for whatever you have done to make this possible.

Jenny Allan

Who can blame parents of vaccine damaged children for being cynical about yet another piece of AS research funding, especially after the Thorsen revelations?

However, Katie has to be commended for this GI initiative which I am sure she has had to really 'push' for. Maybe the tide has finally turned and at last some meaningful research into child intestinal disorders will take place, and hopefully result in some PROPER palliative care and treatments for these children.

John Stone

Dadvocate

Well thank you, but as far as I'm concerned everything which was an issue yesterday is still an issue today. I am glad if people are just beginning to listen to us.

Carol

I thought Brian Deer said that autistic children don't have gastrointestinal disease. These doctors are obviously wasting their time.

Charlotte Buford

My G.daughter had this problem also and the gurd from this caused her to loose her front teeth at 3yrs old. I found a product that straighten out her GI problems called Primal Defense by Garden of Life. It's a probiotic that retains the sterile soil its grown in. Comes in powder form and can be added to anything. She still has autism but no longer has the other GI problems that caused so much pain and is a healthy happy 13yr old.

Dadvocate

John - I didn't say you were Number 1! :) Agitation can be a very effective approach, especially when folks are patting you on the head and telling you to go away. But I think the effectiveness of relying on decible levels is shrinking (on all sides) and suspect that there are likely more open seats at the table on comorbid (and possible root) biomedical conditions than ever, even after the Wakefield affair. The issue of immunological insult from a variety of potential sources is out in the open and not going away. I think the PBS series was highly supportive of this notion and underscored what we don't (and need to) know in this area.

I'm glad we agree that this AS funding this research is a good thing, though we may disagree on the "targeting" issue. I concur that a one size fits all approach is wrongheaded but I believe a broad approach may yield more results (even if by accident).

Benedetta

I've been in this frozen state of mind since 1982 since my daughter came down with Kawasakis, I just did not know I was involved with this mess untill 1986. In 1977 a professor was telling me and a whole, huge class of 200 that there was not problems with vaccines - that there just isn't!--- SO THERE MUST HAVE BEEN A LOT OF PARENTS IN THE 70's maybe the 60's.

SO, I am very glad we are not arguing behind close doors. Because there are a lot of people that wants us hidden and thus do nothing.


A Clich'e becomes a cliche because it is so very true;

"The Squeaky wheel gets the grease" AND it has been almost 30 years for this squeaky wheel - me, my family, and others like me to at least get some - well might get some "research"

Argue behind close doors - indeed!

John Stone

Dadvocate

While not entirely ungratified at being identified as No 1 hell-raiser I am also a believer in practical politics, and I have already welcomed Katie's news. I hope also what it signals is that we are a force to be reckoned with, that we are right to insist on our say and we should not be messed around with.

What I would also caution against in this research is trying too broad an approach, when one child might benefit from one therapy and another from another. If you look for some kind of Evidenced Based Medicine approach which benefits all cases we already know that we will probably only get inconclusive and rather unhelpful results. You can always dilute real benefits and make them insignificant that way.

CT teacher

Just wondering if biomed treatment protocol has included a thorough study of thyroid function, other endocrine disorders, B vitamin metabolism, and/or COQ10 supplementation. I don't know anything about biomed protocol, but from a total mind/body standpoint, these things might be important to explore.

Diane W Farr

I am very skeptical. The study will find out that for centuries ALL children have either suffered from constipation or diahrea. Anti-vaccine groups will be blamed that precious time and money was wasted and that money could have been better spent supporting Poul Thorsen.

Dadvocate

Katie -

This is really, really good stuff. At the White House conference on autism held last week (focused on reauthorization of the Combating Autism Act and IACC, though I'm not a fan of the workings of the latter), it was patently clear that the main group driving the conversation on comorbid and related conditions like GI, epilepsy, immune and mito dysfunction, etc. is Autism Speaks through it's Autism Treatment Network (ATN).

The other "professionals" and "experts" were literally yawning about subtypes and comorbid conditions and moaning and groaning that pediatricians (because of reimbursement) only get 10 minutes a patient (so how can you expect them to be effective) and schools do an awful job on therapy post diagnosis...all of which was highly depressing.

However, I sense a changing of the guard all around and hope to the heavens that I'm right. A ton of the "experts" and "great men (women)" who we've heard from for years and years are literally ancient. Their time has clearly passed and their historical impact will be viewed as slight, IMHO.

One message the AofA folks need to hear (and may not want to) came directly from the Administration and was directed to everyone in the room, from Ari Ne'eman of ASAN and Allison Singer from ASF to Safe Minds, Autism Speaks, ASA and all the Agency, research, and clinical folks. Simply stated it was, "you guys need to argue behind closed doors and present a unified front when asking for funding and supports." That will also make it a heckuva lot easier for AoA aligned folks to get a seat (or more seats) at the table.

I was pleased at the directness. John Stone and others may disagree, but the Administration thinks (and I believe quite justifiably so) that the public bomb throwing, however justified the hurler feels, hurts the chances of getting meaningful legislation passed and policy enacted, even on adult issues like employment, housing, and safety that should be a slam dunk. Legislators and policy makers loathe the prospect of ticking off one advocacy group by supporting another. Inaction is their default position.

Don't forget that there are a lot of other very well organized "single disease or condition" groups out there who are feeling very slighted by the (long overdue) attention autism is getting on the Hill and welcome the opportunity to push autism aside as a "confusing and controversial" issue.

Madvocate

"to investigate the underlying biology of GI dysfunction in children with ASD, and in an animal model, test a novel probiotic therapy to restore function of the GI system."

This is very good news for possible future treatment of acute GI pain, but what is AS doing for acute GI pain right now today while children are experiencing it and suffering from it? Are the treatments Dr. Wakefield and his colleagues found that alleviated these children's suffering (treatments he has referred to as "not rocket science") being advocated for acute pain by Autism Speaks? What about the scoping of these children to determine their GI status?

I have to wonder if autistic children are still being turned away and left untreated by gastroenterologists.

I agree that nothing should be a higher priority than a child's pain, and I'd like to know what AS is doing today to make sure these children get the proper medical attention for their pain.

Stagmom

I' ve been pretty clear in my lack of faith in and support of AS - and I'm not swelling with joy over this study - but I respect Katie's work and know that her son has severe GI issues - and hope that this is a bright spot for us. I have good friends who work for/with AS - and I try to balance my feelings and the reality of how orgs life and politics works.

Jeanna

"There are always leaders and followers = Autism Speaks is a cautious follower and they can thank the braver researchers and doctors in our community for paving the way for their work."

AMEN to that Kim! Amen.

Kevin

Steph, my son too. Seems to be getting better on steriod therapy though. Wish they (and I) had looked into this sooner. My they move fast, then maybe insurance would carry more medical therepies. I'm still fighting BCBS for payments...

Deb in IL

Why am I skeptical? I guess I'll find out if my "gut feeling" will be right in a few years when this study presents it's findings. When you've been lied to so many times, it's hard to believe this is genuine.

Media Scholar

So the same organization that threw millions of laundered CDC tax payer dollars to feed CDC anti-litigation bloc of autism researcher Poul Thorsen is to be applauded?

I'll feel much better when this combination in restraint of JUSTICE is studied.

http://xrl.in/8y1f
Earlier Tuesday, Charles visited the Supreme Court and met with Justices Stephen Breyer, Antonin Scalia and Sonia Sotomayor before attending a reception for past Marshall scholars. The scholarship program gives American students a chance to do graduate work in the United Kingdom.

Breyer greeted Charles at the curb, and the two strode across the court's plaza to its imposing front steps, waving to onlookers. But not even the prince, it seems, can enter the court through its front doors, beneath the words "Equal justice under law."

The court closed the front entrance last year over security concerns. Breyer led Charles around to a new side entrance for visitors.

After about an hour at the court, Charles and Breyer exited through the front door. The prince made his way over to onlookers, where he had his picture taken, chatted and shook hands.

Breyer, whose wife is English, said he had met Charles before. The prince's mother, Queen Elizabeth II, visited the court in 1951, before she became queen.

http://xrl.in/8y1e

Merck board approves $5 billion in stock buybacks
(AP) – 6 days ago

NEW YORK (AP) — Merck & Co. Inc. said Wednesday its board of directors approved the buyback of up to $5 billion in common stock for the drug developer's treasury.

The company, based in Whitehouse Station, N.J., said the program has no expiration. Overall, the company is now authorized to buy back up to $6.4 billion in common stock.

Stagmom

I try to remember a phrase a wise woman taught me many years ago, "Don't punish progress." If AS running this study means more mainstream docs/media have to pay attention to our kids and the "no treatment" community is set aside for the sake of our kids, I'll say Thank You too.

There are always leaders and followers = Autism Speaks is a cautious follower and they can thank the braver researchers and doctors in our community for paving the way for their work.

Kelly Vanicek

Thank you Bob and Suzanne Wright. Thank you Dr. Geri Dawson. Thank you Autism Speaks. And Katie - Thank You for your continued persistence and for keeping us informed.

John Stone

Katie

This is very encouraging. Perhaps, it also shows that opinion can impact on AS and that we must never relent in the pressure.

John

Steph M

Thank you to AS. My child has and continues to suffer from gut issues. It's been a long 8 years.

I hope and pray someone helps us soon.

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