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« National Autism Association on Pediatrics GI Autism Consensus Paper | Main | Build A Communication Bridge with "Healing our Autistic Children" By Dr. Julie Buckley »

Pediatrics Consensus Articles Acknowledge Need to Improve Evaluation and Treatment of GI Disorders in Autism

ARI new logo Landmark Consensus Articles Published in Pediatrics Acknowledge the Need to Improve Evaluation and Treatment of Gastrointestinal Disorders in Individuals with Autism

Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report

Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs

The Autism Research Institute encourages parents who feel their child might have GI dysfunction to bring these important papers to the attention of their health care providers.


New York, NY

A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self- injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.  

Because it was felt that many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, representatives from the Autism Research Institute (ARI) and other autism advocacy groups worked to convene a gut consensus meeting from which the articles were derived.  On May 29–30, 2008, a multidisciplinary panel of 27 clinical and research experts met in Boston, Massachusetts to develop recommendations for the evaluation and treatment of GI disorders in individuals with ASD. 

ARI’s Director Dr. Stephen Edelson commented, “This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism. This published report brings much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions of the report are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative.”

Parents and physicians should be on the lookout for the most common GI symptoms reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, reflux, and abdominal bloating.  Problem behaviors such as self-injury and aggression, as well as overall changes such as sleep disturbance or irritability, might be indicators of stomach pain.  The authors concluded that “The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD.”
 

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

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Autism grandma, the only thing better than sh*t, would be if your grandson said that "Paul Offit is full of sh*t" and he discovered that on his own.

Somehow in all of the carefully orchestrated propaganda press releases, Autism has nothing to do with exposing pregnant mothers and their little children to toxic vaccines, and toxic drugs of all kinds, tylenol and antibiotics included. If they would simply discontinue this, autism rates would reverse back to the 1 in 10,000 that existed prior the vaccine schedule quadrupling. It all just makes me feel so disheartened and angry.

Addressing my grandson's intestinal issues has contributed greatly to his regaining his language capacity finally. On a lighter note, my grandson recently started calling me "Grandma" along with a myriad of other new words, including "sh*t". But how many parents actually get excited when they hear their 3 year old say "sh*t"? Hey it's another new word, so we are excited. After 2 years of hoping for something else to emerge from his lips besides "Mama" and "Kitty" we are happy as hell.

Big thanks to the doctors who really care about our kiddos.

GI problems definitely exist for my son. We fortunately are beginning to receive the screening recommended in this paper today. I am hopeful that it will lead to better health for my ASD child.

Re: misleading headlines

Again, certain elite groups cannot find anything that causes Autism, or find anything that might help children with Autism...

However, they always want to have the final say as the "Autism experts." Any study that is not designed, approved or conducted by them can never be given any credibility.

They cannot lead, they cannot follow, they cannot tell the truth, so they just need to get the hell out of the way....

That L.A. Times article about parents trying to get nannies to have flu & H1N1 shots was interesting because of how much push back there was from the nannies, many of whom were concerned about side effects, safety, even autism. Like Stan said, the cat is out of the bag and "the PTB can't control the people power going on. More and more in the general public are getting the message: something is going on here that isn't right."

http://www.latimes.com/news/local/la-me-nanny-flu3-2010jan03,0,3027295.story

LA Times had a very small (2 inch) version of this with the same type of misleading headline. So wrong, and yet so unsurprising. They've also had an article encouraging nannies to get H1N1 shot because it makes them more employable, and an article about how to be healthier in the New Year with one of the items being "encourage a friend or relative to get the H1N1 vaccine, and get one yourself." I chalk it up to the NIH's billions of dollars budgeted for "Public Information and Communication Services."

At least it's a step. What this highlights is the big disconnect between what the officials say (and get pushed in the MSM) and what parents experience. The cat is well and truly out of the bag now, and is spitting and clawing and letting itself be heard: the PTB can't control the people power going on. More and more in the general public are getting the message: something is going on here that isn't right. The ARI and AoA and other sources & sites are doing major work in creating an army that is mad as hell and won't take it anymore. Organized letter-writing campaigns & such is the key - and calling the MSM on their obeisance to the Establishment (as part OF that Establishment).

That Establishment can't control the situation as well anymore as it has up 'til now. It can still frighten the public with scare stories about what will happen if more parents fail to have their children vaxed on the schedule, but as long as the ASD army keeps hammering away at the need for safer vaccines, and sponsors independent studies, and mounts good, solid critiques of the Establishment's studies & publicizes them (think Blaxilll & Yazbak, et al), and get their individual stories out via more local news media (& keeps supporting true investigative journalists in the MSM, like CBS's Sharyl Attkisson), the tide will change.

It won't change totally until the whole reason for the PTB's stubborn pushing of the vaccine tool is outed; but that's for down the road still a ways. Until then, the ASD army has its work cut out for it. And may it feel supported in its work by all the other 'armies' that have yet to be as well organized and kitted out with info as the ASD vanguard - those nascent armies whose children have suffered various allergies/autoimmune diseases & other neurological-damage disorders at the hands of medical professionals who failed to mount the long-term studies of vaccines that were clearly called for, back at the very beginning, for such an invasive procedure. Insert the sound of grinding teeth here.

Physician: First, Do No Harm. Physician: Heal Thyself. And then we will see a proper resolution to this matter. With a huge apology from the PTB to come. Or not. It doesn't matter, really. Their time is up. And thanks, in very large part, to the work of the ASD community.

Well done, folks. Your time has come; because you had the patience to hang in there, and keep on trucking.

Never give up. Never. Because your cause is just.


P.S. For the record; my take: No, vaccines are not the whole answer to ASD. But THEY ARE INVOLVED. And crucially. And that's what good; independent studies will uncover. As they have already started to. With the organizing help of the ASD community. Who the hell else cared enough??

"Consensus" kind of people can only take steps if there lots of other people about to take the same step with them. If this is what it takes for pediatricians to pay attention to the issue, so be it. If written permission from a "consensus" is needed re: gastrointestinal problems, whether in a child with ASD or not, with a reminder that there could be an actual medical condition that may need to be addressed is what a pediatrician needs to actually perform his job, and not to blow it off as being all in someone's head, so be it. If this gives them the okay to actually discuss "poop" without being afraid of being castrated like Wakefield, let them consense all they want. Because the next step will be that they will suddenly find themselves "noticing," and possibly actually making note of, all sorts of stomach issues. And they'll all get together again and decide that, wow, there are a lot of ASD kids out there requiring medical advice, and wow, actually treating these issues with sound professional protocol may be a way to pad the losses they may soon be feeling as their clients turn to Wal-Mart and CVS to get their shots, which of course the insurance companies will be encouraging as it will save them money. At the very least, maybe the idea of non-verbal kids "postering" to try and relieve their stomach pain may become part of the discussion, that is if a pediatrician bothers to read the entire article. In the meantime, maybe I can use the AP to line the litter box.

So how do we complain to the AP for the ridiculous spin they put on this?

When you actually read the article in Pediatrics (how many CBS viewers or newspaper readers will actually do that?) you find that what they really say is they can't RECOMMEND special diets because they DON'T KNOW if they work or not. They basically say the same thing about vaccine triggers for GI problems and Wakefield's work.

This is very similar to the VSD study that reached the conclusion that they DIDN'T KNOW if vaccines and thimerisol was linked to autism or not.

In all of these cases, they are just saying that further study is needed. But somewhere there is an actual person/reporter/editor who writes the screaming headline that is totally inaccurate. This is worse than spin, it is actually journalistic lying.

Where would it be most effective to complain?

This paper is very exciting. Thanks so much to Dr. Buie, Dr. Bauman, and others who are working towards better treatment for GI issues.

News coverage such as the AP's is infuriating. This has been a year of so much bad journalism regarding autism causation and treatments. Our major news organizations either have blinders on or are under the thumb of pharma and govt agencies or both.

I think we should hunt down the author of that AP article. Anyone know how to do it? Looks to me like it was written, or ghost-written, by the Paul and Alison crowd. A pharma neighbor of mine looked at it with me and thought it reeked of damage control--a group of individuals out there hates this study, so they spin the reporting of it hugely, hoping no one ever actually reads it. Also note that it is front and center on the Autism Science Foundation website-just sayin'

would love for a team of these so called scientists to spend a week at our home, and tell me if my kids pooping/gastrointestinal distention looks normal. Give me a break...

I agree wholeheartedly with Mike...I must be missing the same thing as him.

Yesterday CBS:

http://www.cbsnews.com/stories/2010/01/04/health/main6052327.shtml?tag=contentMain;contentBody

CBS reports under the headline:

Report: "Special diets do not help autism"

"Study says Digestive Problems Not More Common in Autistic Children; Refutes link between digestion, vaccine (and autism?)

Am I supposed to be grateful that this "consensus" of 27 clinical and research experts, who met in May, 2008 .. recommended that individuals with "ASDs whose families report gastrointestinal symptoms warrant a thorough gastrointestinal evaluation"?

Why didn't the study reveal WHY families reporting gastrointestinal symptoms did NOT receive a thorough gastrointestinal evaluation as a matter of COMMON SENSE!!!

To me .. I do not understand why anyone would consider the following "take away messages" the results of a "landmark" study:

"all of the common gastrointestingal conditions encountered by individuals with typical neurologic development are also present in individuals with ASDs"?

that

"communication impairments characteristics of ASDs may lead to unusual presentations of gastrointestinal disorders, including sleep disturbances and problem behaviors?

that

"caregivers and health care professionals should be alert to the presentation of atypical signs of common gastrointestinal disorders in patients with ASDs"?

that

"professional supervision can help to identify and treat any nutritional inadequacy of a person with ASD who is on a restricted diet"?

that

"integrating behavioral and biomedical approaches can be advantageous in conceptualizing the role of pain as a setting event for problem behavior, facilitating diagnosis, and addressing residual pain symptoms to enhance quality of life"?

that

"genetic assays should be included as part of the data to be collected in research protocols"?

that

"At present, there are inadequate data to establish a causal role for intestinal inflammation, increased intestinal permeability, immunologic abnormalities, or food allergies in ASDs"?

Landmark? I must be missing something.

yes Mike. The Boston Globe printed the same article with a very misleading (downright false) header below...we should report this AP article to the FCC. I added the link if anyone wants to complain to the FCC. It's easy.

"Panel finds no digestion problem specific to autism" - Associated Press / January 4, 2010

http://www.boston.com/news/science/articles/2010/01/04/panel_finds_no_digestion_problem_specific_to_autism/


link to Federal Communications Commission-
online complaints form:

http://esupport.fcc.gov/complaints.htm

No I did not actually! Thank you for that Alison!

I find that very, very interesting! It makes me wonder how many of us on the Spectrum have that exact issue, if it is a pretty large number, then that has to be more than just a concindence!

As stated before, being around you all convinces me of my sanity more and more everyday! I am in your debt!

I agree with Mike. The article from the AP has quite a slant put on it and the average person reading it would take away that there is no link between diet and autism.

http://www.chicagotribune.com/health/chi-ap-us-med-autismdiets,0,6505555.story

That is unfortunate because, by my reading, the panel only did a review of the existing literature and reported that there isn't enough evidence to draw any conclusion with regards to increased prevalence or the existence of a unique "autisic enterocolitis". They also state that further study is required on both fronts.

The statements made in the pediatrics paper leave a very different impression than the impression left by reading the AP article.

Sure love that unbiased reporting.

The cynic in me thinks mainstream docs just want a piece of the autism treatment pie. Why let all that money go to the DAN doctors. Parents willing to pay out of pocket too.

Yes Mike, pretty crazy this turns up in the mainstream media as "diet doesn't help autism". Ok, I guess I'll put my son back on cow yogurt, listen to him scream all night, then go work a 12 hour day. Instead of having a sweet-tempered kid who sleeps like an angel all night. Since the AP has informed me that diet doesn't help.

Mike,
Yes! The same article ran in our paper. Second page news and the title in our paper was "Evidence lacking for special diets in autism". Talk about spin from what was actually published in Pediatrics! And the word "evidence" implies that this is about a new research study. Here's the quote about Wakefield:

"The report refutes the controversial idea that there's a digestive problem specific to autism called "leaky gut" or "autistic enterocolitis." The hypothesis was first floated in 1998 in a now-discredited study by British physician Dr. Andrew Wakefield. His paper tied a particular type of autism and bowel disease to the measles vaccine."

But curiously right after that, it quotes Rebecca Estepp of TACA, who has her son on a special diet, as praising the report and "filled with hope" due to the recommendations in it. What a disconnect.

The article was incredibly misleading and then nonsensical.

Infuriating!

Yes, Mike the same duplicitious falderol appeared in the Buffalo News.

So, are the doctors going to stop pushing dangeorus psych meds on these very sick children.

Can you imagine the PAIN these children are in. It's disgusting that this has gone on so long. They literally have holes in their guts.

No mention of what's causing this. Perhaps the only things the ped's do - vaccines and antibiotics.

Not really. In my local paper, national things in this area are rarely mentioned. You have to go to hte USA Today stand for that.

In my line of work, I have noticed that many, though not all on the spectrum do have very sensitive stomachs. Whenever they are stressed for example, stomach problems that cause great pain will start. I have problems with mine whenever my anxiety is high.

The diet, though tried, did nothing for it, but the anxiety medication does help. This continues to make me think more on the thoery about the weakened immune system and how it relates to autism.

I have stated before, those with weaker immunes are not as able to process toxins as the regular person. So what is not poisonus to the average person may be very poisonus to me.

Whence, our bodies are less able to break down the ingreidents in vaccines, add a infection on top of that and here come's trouble!!

Have any of you ever noticed with your kids that when they get sick, they get sick first, and the sickness stays around longer and has more of a effect on them than regular kids? I've always had that.

Back on topic. Perhaps the weakened immune also leads to more sensitive stomachs.

OK, what am I missing? The headline in the article in our local rag yesterday read "No Tie Between Autism, Digestive Problems". The article started out "An expert panel says there's no rigorous evidence that digestive problems are more common in children with autism compared with other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers". The article goes on to site Dr. Buie and specifically discounts Wakefield's "leaky gut" and "autistic entercolities" ideas. The article concludes by stating that Buie and other research doctors have avoided digestive issues in autism because of their connection with Wakefield's research, which set off a backlash against vaccines that continues to this day.

The article was put out by the Associated Press and had a Chicago dateline. After reading the results of the full paper, the article is extremely misleading. Anybody else experience this in their local paper?

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