Autism Speaks Applauds Consensus Statement on GI Recommendations
National Autism Association on Pediatrics GI Autism Consensus Paper

New Papers on Autism and GI Disorders

Tummy-ache-abdominal-pain-t13513 By Jane Johnson, from the ARI e-news. For a free subscription, click HERE. 

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


All too often parents are told that their child’s GI symptoms are “normal” for someone with autism, and sent home without further investigation.  Because many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, ARI, ASA, Northwest Autism Foundation, and Easter Seals of Oregon sponsored an unbiased review of the evidence linking gastrointestinal disorders with autism.  ARI’s Dr. Steve Edelson commented, “This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism.”

On May 29–30, 2008, a multidisciplinary panel led by Dr. Harland Winter and Dr. Timothy Buie of Harvard Medical School met in Boston, Massachusetts to develop consensus statements and recommendations for evaluating, diagnosing and treating GI disorders in individuals with ASD.  Working groups included 27 experts in child psychiatry, developmental pediatrics, epidemiology, medical genetics, immunology, nursing, pediatric allergy, pediatric gastroenterology, pediatric pain, pediatric neurology, pediatric nutrition, and psychology.  The meeting resulted in the publication of two papers in the January 4th edition of Pediatrics: “Evaluation, Diagnosis and Treatment of Gastrointestinal Disorders in Individuals with ASDs,” and “Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs.”



The crux of the problem is that "for children with ASD, behavioral indicators may be the only manifestation of pain.”  The medical literature does not address appropriate modifications in the diagnostic evaluation based on the needs of people with disabilities, such as impaired language, and when symptoms are not recognized as being related to an underlying medical condition, relevant diagnostic studies might not be considered.  Parents and physicians should be on the lookout for the most common GI disorders reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, encopresis, GERD, and abdominal bloating.  Problem behaviors such as self-injury and aggression, as well as sleep disturbance or irritability, might be indicators of stomach pain.

Many families report improvements in behavior following initiation of gluten free and casein free (GF/CF) diets.  The authors wrote: “Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a sub-group of individuals who may respond to such diets. Professional supervision of restricted diets is recommended to prevent nutritional inadequacies.”  It’s noteworthy that of the 3,593 parents who responded to ARI's survey, 69% felt that their child improved on the diet while only 3% felt that their child got worse.  (We agree that a trained nutritionist or dietitian should guide any trial of a restricted diet.  Towards that end, ARI sponsors a Nutrition Seminar twice a year to train professionals in the proper implementation of this and other diets.)

Dr. Buie, et al. conclude, “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”—in other words, there is no excuse for sending a patient home without the same investigation that would be granted to their neurotypical peers.  Parents who feel their child might have GI dysfunction or disease should bring these important papers to the attention of their physician. “These published reports bring much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions 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,” says Dr. Edelson.

Jane Johnson is Executive Director of Defeat Autism Now.


 

Comments

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Cristine R. Jimenez

I am a Language Stimulation Specialist at Speech Therapy Center located in Miami, and we too are informing our community on how GI disorders are related to Autism. We are currently releasing a series of blogs related to Autism and Nutrition and how feeding your child the right foods may reduce the negative symptoms of Autism.

Feel free to visit our website to read on current events going on in the Speech Pathology field, exciting and popular topics, and free parent education resources!

www.myspeechtherapycenter.com

resveratrol

We should all be aware of this 'coz even some physician take this for granted.

Jacqui

Thank you so much! I have a child with severe autism and he was recently diagnosed with M.R. because he had not been learning. Instead of looking into why he wasn't learning, and was injuring himself for the past few years, they stuck a label on him. I recently started him on flagyl for chlostridia and all of a sudden he is having normal BM's and his injurious behaviors are getting better. We had him on the GF/CF diet for 3 years, and nothing happened, he got worse, now he is still cassien free, but we are thinking about starting the GF/CF diet again now that the bacteria is gone. I had even brought the thought of him having an infection up with the gastroenterologist because he used to eat his feces when he was younger but after a barely usable ammount of stool was collected they determined he was "normal". I am so glad to see this if not for my child, at least it can save a lot of pain for others.

MinorityView

I think there is a message here. What they are trying to tell us is: We'll treat the sick children if you just shut up about vaccines. Hence the weird AP press release, the standard attack on Dr. Wakefield, the strangely mixed tone of the whole thing. They are making a major concession by admitting that these kids are physically ill, but they are trying to dodge the bullet that the physical illness might actually be connected to autism in some way and that there might actually be an identifiable cause for the physical illness

Theodore M. Van Oosbree

Am I wrong or did this panel also deny that there is any type of GI disease unique to autistics (specifically, autistic enterocolitis)? My local newspaper story said that was a specific claim by Dr. Buie. Of course, it's nice to know that pediatricians now think it's a good idea to treat autistic patients with appropriate therapy for their GI problems but just what were they thinking before?

Autism Grandma

Natural Medicine expert Fred Van Liew sent me this email regarding vaccines and autism. He will be interviewing Paul G. King, PhD in his radio broadcast this week:

I have Paul G. King, PhD, a noted expert in the damage caused by mercury in vaccines, on my radio program via www.hthradio.net Thursday morning at 9 am Central Time, Jan. 7th.

He is meticulous in explaining how Thimerasol is so culpable in autism and other destruction of our health.

Please help me get the word out on this terrific interview Thursday morning.

Fred Van Liew interviews Paul G. King, PhD Thursday morning on the damage caused by mercury in vaccines. 9 am Central Time on www.hthradio.net, Your Health, Your Choice.

Stephen

> Chronic, UnResolved / UnTreated Inflammation spurred by an Immune System Over-Load is now considered a Key Cause / Factor in almost all Chronic Degenerative and LifeStyle Diseases.

> 70 % of kids on the autistic spectrum have altered immune function.

> 95 % of these kids have swollen bellies and gut problems.

> 60-70 % of the immune system is in the gut

> autism may primarily be an inflammatory condition

> Reduce the inflammation and you reduce the sources of autism.

> Treat the inflammation in your body and you can heal your brain inflammation !

Termed ALLERGY MARCH...
1 in 3 INFANTs Begin Life Fighting a Lifetime sequence of multiple Diseases as a result of their Allergy Disease.

( Enviro & FOOD ) ALLERGY is a 34 / 7 / 52 > A Lifetime, Progressive, Cumulative, Chronic Inflammatory, Auto-Immune Disease.

ALLERGY MARCH = Allergy Parents > Allergy INFANT / Birth > Eczema (Food allergy ) > G.I. / Colic ( FOOD Allergy ) > Ear > Respiratory > Rhinitis > Allergic ASTHMA.

And ...
Allergy MARCH > Does NOT Stop at Allergic ASHMA...

Rather.. It is just one of many Disease MileStones in a LifeTime Consumption of Allergy MED's > Which only Mask SYMPTOMs > Leaving Progression of Allergy Disease InTact > To Continue / Exacerbate UnAbated...

Taking EACH Immune Systemm Compromised Sufferer on a Lifetime, Slippery Slope of further "Allergy Driven" Diseases, recalcitrant Health Issues & compromised Quality of Life / Poor Self Esteem.

Rarely does "One" single issue dominate an Individual's Health Status..

Rather is is the cummulation of multiple "Influences" that result in a final Health Status..

As such, It is never to late to Test / Treat / Extinguish the Inflammation FIREs of Enviro & FOOD ( IgE & IgG4) Allergy.

Take Allergy Inflammation > Out of Your Child's Future.


Katie Wright

Thank you Jane for this excellent summary.

As a parent of a severely GI affected ASD child, I too was very pleased to see the AAP finally recognize how underserved these children are. The guidelines for identifying GI disorders are well done, especially in noting that this is largely a nonverbal population and special care must be taken to listening to parental accounts of the patients' history/ symptoms.

I was, however, disappointed with the AAP's inadequate review of the dietary intervention literature. For the AAP to continue to postulate that dietary interventions are "dangerous" while talking about performing spinal taps on affected children and prescribing powerful off label drugs is ridiculous. I was saddened that the AAP did not take this opportunity to better educate themselves on this very important issue.


Instead of inviting child psychiatrists (why on earth!) to this GI conference why did the AAP not invite autism nutrition experts like Julie Matthews or Kelly Barnhill? The AAP's ordinary nutritionists are not well informed or experienced in working exclusively with this population.

Rather than continually condemning one of the few intervention tools parents possess, the AAP would be wise to work with the community to better understand this emerging science. Better yet why hasn't the AAP instead putting this energy in DEVELOPING new inventions to help our children?

Jenna Smith

I'm with Jack. This gets passed off as some great scientific achievement and yet how effing hard is it to look at a child with raging diarrhea and decide he needs treatment (MAINSTREAM treatment)? The stuff you hear about how stupified the peds are by all this, is stupifying. And then overpaid, overpromoted idiots like Geraldine Dawson with all their perfectly polished pablum have to be led to the most obvious findings by a bunch of exhausted, bedraggled parents. So I'm happy, but in the angriest possible way.

Jack

This is really really a great thing. I should be happy. I'm usually thrilled when someone acknowledges I was right afterall. And most important, this will help future kids and parents.

But, for some reason I'm just extra pissed today.

Why are they 10 years (at least) behind? How many parental concerns were dismissed in the meantime?
How many parents where told they just had a laundry problem not a medical one?
How many kids suffered in a pain?
How much sleep was lost due to pain?
How many "behavior issues" were pain?

And what are they going to do now? Are they going to ask WHY THIS IS HAPPENING TO THESE KIDS, or just pat themselves on the back for recognizing them?

Alison Davis

Thank you, Age of Autism, for making the information available to all who seek answers for their loved ones.

momof3au

http://autismsocietyofnc.wordpress.com/2010/01/05/autism-medicine-and-media/

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