New study on inflammatory bowel disease and autism: Prevalence of Inflammatory Bowel Disease Among Patients with Autism Spectrum Disorders.

12 Aug

People with developmental disabilities often have additional medical issues at rates higher than the general population. For example, heart problems are more common in the Down Syndrome population and Timothy Syndrome. Hip dislocation is common among those in the Fragile X community. Mental health conditions and neurological disorders are very common in autistics (but somehow those are rarely mentioned in discussions of autism and comorbidities).

When it comes to autism parents online, perhaps the most talked about autism comorbidity is gastrointestinal disease. And, in specific, inflammatory bowel disease. This is a lasting legacy of Andrew Wakefield’s attempt to link the MMR vaccine and autism (an effort which set back work on autism and GI disease by a decade or more–see Blame Wakefield For Missed Autism-Gut Connection).

Mr. Wakefield’s assertion was that the MMR vaccine leads to a unique form of IBD (he dubbed it autistic enterocolitis, a condition which doesn’t appear to exist) and this somehow leads to autism. The model also asserts that autism rates have climbed with the introduction of the MMR in the UK (an argument that fails when when considers when the MMR was introduced in the U.S., but I digress). Given the Wakefield model, including the claim that the MMR has played a major role in the “autism epidemic”, we would expect a large fraction of autistics should have IBD.

With apologies to autistics with IBD for taking so long on this introduction–this all begs the question of what is the prevalence of IBD in the autistic population? Well, a recent study discusses this:

Prevalence of Inflammatory Bowel Disease Among Patients with Autism Spectrum Disorders.

Before we get to the prevalence let’s consider the important points. First–IBD does exist in autistics. Given communication issues and sensory issues, any medical condition is serious in the autistic population. Second–IBD is more prevalent in the autistic population. What this may say about the biology of autistics and the developmental trajectory is not discussed in the abstract of this study.

Finally let’s ask how big is the prevalence of IBD in the autistic population? The study looked at two sample populations. In one population 7 out of 2728 (0.26%) autistics had IBD. For another, 16 of 7201 (0.22%). Just because the prevalence is small doesn’t mean this isn’t an important issue for the autism communities. But, let’s face it, the claims of high and rising IBD prevalence in the autism community–the claims by Mr. Wakefield to support his attack on the MMR vaccine–are just not true. And, yes, this also means that people who think that all or most autistic kids should be treated for IBD are also not doing a service. Yes, treat people with IBD. But no, don’t assume autism = person with IBD.

The fact that IBD is not that common in autistics is not really that new. I recall the press conference for the MMR/autism study by Hornig et al.. One thing that slowed the study was the fact that there weren’t that many autistic kids whose symptoms really indicated the need for a colonoscopy. Contrary to some practitioners who seem to believe that all autistics should be ‘scoped.

Here’s the abstract from the study:

The objective of this study was to measure the prevalence of inflammatory bowel disease (IBD) among patients with autism spectrum disorders (ASD), which has not been well described previously.

The rates of IBD among patients with and without ASD were measured in 4 study populations with distinct modes of ascertainment: a health care benefits company, 2 pediatric tertiary care centers, and a national ASD repository. The rates of IBD (established through International Classification of Diseases, Ninth Revision, Clinical Modification [ICD-9-CM] codes) were compared with respective controls and combined using a Stouffer meta-analysis. Clinical charts were also reviewed for IBD among patients with ICD-9-CM codes for both IBD and ASD at one of the pediatric tertiary care centers. This expert-verified rate was compared with the rate in the repository study population (where IBD diagnoses were established by expert review) and in nationally reported rates for pediatric IBD.

In all of case-control study populations, the rates of IBD-related ICD-9-CM codes for patients with ASD were significantly higher than that of their respective controls (Stouffer meta-analysis, P < 0.001). Expert-verified rates of IBD among patients with ASD were 7 of 2728 patients in one study population and 16 of 7201 in a second study population. The age-adjusted prevalence of IBD among patients with ASD was higher than their respective controls and nationally reported rates of pediatric IBD.

Across each population with different kinds of ascertainment, there was a consistent and statistically significant increased prevalance of IBD in patients with ASD than their respective controls and nationally reported rates for pediatric IBD.

By Matt Carey

9 Responses to “New study on inflammatory bowel disease and autism: Prevalence of Inflammatory Bowel Disease Among Patients with Autism Spectrum Disorders.”

  1. Roger Kulp August 13, 2015 at 12:51 #

    Just thought I would add that not all GI disease in autism is related to IBD.Some of it is related to mitochondrial disease or dysfunction.Another area of research that was greatly harmed or set back by Wakefield.The process is well underway,but it will still take many years before we can completely separate medical comorbidities in autism from the myth they are caused by vaccines.Andrew Wakefield caused every bit as much damage to autism research,and as much suffering to autistics as Bruno Bettleheim did.

  2. Roger Kulp August 13, 2015 at 19:32 #

    Psychiatric comorbidity accompanying irritable bowel syndrome

  3. Eileen Nicole Simon August 14, 2015 at 00:23 #

    The brain must be the focus of research on autism. I pointed this out in a letter, “The lessons of MMR” published in the Lancet in response to Wakefield’s article (Lancet, 1 May 2004 p1473).

    Gastrointestinal problems in neurologic disorders can be traced to defects of autonomic control in the brainstem. GI problems are prominent in cases of chronic substance abuse. The pattern of brainstem injury was first described by Wernicke in 1881, translated by Thomson AD et al. Alcohol and Alcoholism 2008 Mar-Apr;43(2):174-9.

    Inflammatory bowel disorders do not cause autism. The brain damage that causes autism more likely also impairs peristalsis, which will lead to inflammation throughout the intestinal system.

  4. 61chrissterry August 16, 2015 at 17:45 #

    Reblogged this on 61chrissterry.

    • Brian Deer August 20, 2015 at 08:13 #

      Eileen Nicole Simon:

      “Gastrointestinal problems in neurologic disorders can be traced to defects of autonomic control in the brainstem.”

      “The brain damage that causes autism more likely also impairs peristalsis, which will lead to inflammation throughout the intestinal system.”

      That’s exactly what was seen in some of Wakefield’s original 12. One kid was being given packets after packets of laxatives – over many years – because his bowel simply didn’t push the stuff through. I always thought this was a signalling issue, after talking to the parents.

      But I’ve never seen any papers where anybody describes the relationship with inflammation, It may be just something that nobody has thought to describe. If you know of any, I’d love to get a reference or two.

      Also, although bowel prep for colonoscopy probably calms everyone, parents in the Wakefield/Walker-Smith research were reporting dramatic behavioural change immediately prior to the kids being scoped.

      The kids’ records showed that almost all 12 of their subjects suffered from severe constipation, but, of course, this information was withheld from Wakefield’s paper. The authors actually withheld the main clinical GI symptom/sign, which of course is a symptom/sign not often seen with inflammatory bowel disease. I guess it would have been a give-away as to what was going on if they revealed the truth in the paper.

      Personally, I think it was an unconscionable outrage that Wakefield. Walker-Smith and Murch failed to address this issue, which would obviously have been of interest to doctors caring for kids with autism. And, of course, they never published again on those kids, to say what happened to them.

      BTW I think there are also other reasons for GI issues, too: difficulties in toilet training, pica, consumption of highly salted food (crisps etc).

      None of this has ever been discussed by Wakefield or Walker-Smith, who, in my view, were six of one and half a dozen of the other. Personally, I think the GMC should have bitten the bullet, reconvened the fitness to practice panel and struck Walker-Smith off again.

      • Eileen Nicole Simon August 20, 2015 at 21:19 #

        Brian Deer:
        I am not an expert on autonomic function, but it seems likely that brain centers for control of heart rate, breathing, peristalsis, and other functions vital for survival must have priority for ongoing function.

        I worked as a nurse for 23 years with mentally ill patients, many of whom had also turned to abuse of mind-altering substances. If something is mind-altering, it must also be brain-altering, and in chronic cases lead to permanent damage in the brain. Many of these patients had severe GI problems, and were dependent on laxatives.

        I cited a translation above of Wernicke’s 1881 paper on symmetric bilateral brainstem injury caused by chronic alcohol abuse, and a case of sulfuric acid poisoning. Two other seminal papers are those of S Kety (1962) and L Sokoloff (1981), which are both free via PubMed. Kety used an inert radioactive tracer to investigate blood flow in the brain, and Sokoloff a radioactive analogue of glucose. Blood flow and glucose utilization were highest in brainstem centers, especially relay nuclei in the auditory pathway and the basal ganglia.

        My son’s autism was caused by near fatal oxygen deficiency at birth, plus jaundice. In 1969 I noticed WF Windle’s research with monkeys on brain damage caused by asphyxia at birth. Most prominent was damage in the auditory pathway and basal ganglia. RE Myers (1972) produced damage in the cerebral cortex in monkeys subjected to hypoxia rather than total asphyxia.

        During hypoxia brainstem centers of high blood flow and metabolism are spared. Hemoglobin releases oxygen in exchange for carbon dioxide in centers of highest metabolic need during a period of hypoxia. Total asphyxia leads to death within 4 to 6 minutes.

        The effects on the brain of chronic exposure to toxic substances (including alcohol) may be more similar to asphyxia, because protective mechanisms like the hemoglobin response during hypoxia won’t work.

        In PubMed I put in keywords peristalsis autonomic and found 443 citations. This should be an important area of research, especially because of recent increases in drug abuse. And for autism, research must focus on damage in the brain. Auditory centers and the basal ganglia should be investigated for their involvement in disordered language development and repetitive movements.

  5. Roger Kulp August 21, 2015 at 16:09 #

    I came here originally to post this about GI disorders and sleep disturbances.Definitely worth a read.

    But I found I have a lot more to say

    To Brian Deer

    As much as I admire your work in exposing the fraud and deception of Mr. Wakefield,your comment here displays a remarkable amount of ignorance as far as the various medical conditions underlying autism is concerned.These conditions are many and varied.I do understand this may not be something you concern yourself with,but I would advise you against making speculation about that which you know little.I do not mean any rudeness by this comment,and I am aware that like many on the spectrum,I can come across as overly blunt and crude in my comments.This is not my intention either.

    I would suggest you do some reading about recent research about the gut-brain axis in regards to autism.

    To Eileen

    I have read your comments over at Age of Autism with great interest in the the last few years.I may be one of the few who have.For those that have not,your experiences remind me very much of those of the late lilady.Your postings are the only reason I still go over to Age of Autism and read comments.

    I would humbly suggest you are wasting your time posting over there,as I had for several years.These are some of the most hardcore,most bitter and angry antivaxers there are.They are not friends or allies of anybody whose autism cannot be perceived as “vaccine damage”.And they are not nice people either.It took me a long time to realize this.Those of us who believe autism is a serious disorder,with many comorbidites,but is not caused by vaccines,have no real place to go,either on the web,or in real life.This is very wrong,and needs to change.

    • Eileen Nicole Simon August 25, 2015 at 19:15 #

      Roger Kulp and Brian Deer:

      Vaccination is a highly visible invasive procedure and an obvious target to question as a cause of autism, seizure disorder, and more. Anger should be understandable in parents of a disabled child, as should their search for a cause. However, vaccination as a cause of autism might never have come up if traditional obstetric practice had not been abandoned at about the same time the vaccine schedule was increased.

      Clamping the umbilical cord immediately after birth has to be one of the most glaring medical errors of all time. In the UK last December this protocol was changed. Now the cord is not to be clamped until 5 minutes after birth. A resuscitation cart can be wheeled to the delivery bed to promote onset of breathing while leaving the umbilical cord intact.

      Traditional textbooks taught that the cord should not be tied until pulsations in it ceased. Pulsations of the cord indicate that the newborn heart is continuing to pump blood to the placenta. Pulsations of the cord indicate that the fetal heart valves have not yet closed, the ductus arteriosus and foramen ovale.

      Clamping the cord before the first breath will cause momentary asphyxia. Asphyxia lasting as long as 5 minutes will damage the brain, and a low Apgar score at 5 minutes is ominous.

      Damage affecting relay nuclei in the brainstem auditory pathway and basal ganglia was reported in monkeys subjected to asphyxia at birth by WF Windle and RE Myers (1959-1972). These are sites of highest blood flow and aerobic metabolism in the brain. Autonomic centers that control heart rate, breathing, and peristalsis are likely even more active, but too small to show up on images of blood flow and metabolism, as I discussed in my response to Brian Deer above.

      Autism has many causes. All causes must affect the centers of the brain that lead to its distinctive neurologic signs: Language disorder, diminished level of (social) consciousness, and repetitive movements.

      The brain must be the focus of research on all of autism’s many causes. I will continue to try to point this out.


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