A Gut-Feeling about Autism

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My own opinion of the relationship between autism and gut problems (based on research and extensive reading, rather than a “gut-feeling”), is that the two issues need to be approached separately: More specifically, that there is nothing inherent in autism that means a child has a gut problem, but that plenty of children with autism do clearly have gut problems that need to be managed. And importantly, that for those autistic children who do suffer from gut problems, addressing those problems can lessen the severity of the autism symptoms. This lessening of the severity of the symptoms though does not mean the autism is being fixed, it is a natural consequence of increasing the “comfort” of the child: If a child already has significant sensory, communication and behavioural issues, pain and general un-well-being is only going to make them worse.

Keeping the issues of gut and autism separate, is further complicated by the often restrictive and poor diets that our children have, due to sensory (and sometimes fine motor) problems. Fixing dietary deficiencies can also improve behaviour and reduce discomfort, in ways that will can show as improvements in the symptoms of autism.

With all of these “maybes” and links, it’s easy to think that – as a parent – you might as well give a special diets a go. What’s the harm? I’ve written before about the harm that occurs from taking part in a GF/CF diet – which can be physical as well as financial – so I won’t re-hash that here. (Of course, if you have proof that your child is sensitive to gluten and casein, those harms are more than worth the costs.) More generally, there is a harm in thinking that autism as a condition is caused by – and be cured by – addressing gut problems. Not least of all because it can detract a parent’s time and resources from other treatments and therapies that have a far more positive and reliable impact on the symptoms of autism.

Of course all of this debate gets muddied by Wakefield waters. Many people naturally associate claims about a gut connection, with Wakefield’s claims. Wakefield’s claims are not generally taken seriously anymore, and so associated claims about the gut are also often dismissed (which is just another example of the damage done by Wakefield). It’s important to consider new hypotheses about any relationship between the gut and autism, independent of the specific one suggested by Wakefield (which had been established in labs that were turning out false positives, and couldn’t be replicated in independent labs).

I am particularly aware of these issues because my husband – my autistic son’s father – has Crohn’s disease (which was Wakefield’s passion prior to autism). Crohn’s can be inherited, and can be a particularly severe gut problem. We have no evidence that our son has inherited Crohn’s from his father. We do know that our son doesn’t have any food sensitivities or allergies because we’ve had him tested. I am very aware of my son’s bowel motions since he still needs help in the bathroom. I monitor him, and the science about all this, as best I can.

So I was particularly interested to see this today: “Supporting Real Autism Science” by Todd Drezner, at Huffington Post. I strongly suggest popping over for a read. I equally suggest avoiding the comments since they’re going to turn into a “we hate Wakefield” “we love Wakefield” fest, which is not the heart of the issue, and should not be the heart of the issue: As Todd points out, it is a distraction. (It makes you wonder if some of the commenters even got the point and importance of the post.) I do hope that the messages and calm reason of Todd’s post, help others refocus the debate; away from personalities and improbable theories, and back towards new hypotheses and science.

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20 Responses to A Gut-Feeling about Autism

  1. MJ says:

    I think there is far more to the connection between GI problems and autism that you might be overlooking. If a child’s intestinal barrier is not functioning properly and thus preventing essential nutrient from being absorbed and allowing things into the body that shouldn’t be there then the problem isn’t just pain and a general un-well being.

    The issue then becomes a potential lack of nutrient and the body’s response to the the particles that shouldn’t make it out of the intestine. What do you think happens to very young children who don’t have sufficient levels of basic nutrients?

    For example, all three of my daughters were iron deficient at about 18 months old – in spite of eating a diet that was extremely high in source of iron – and required supplements to bring their iron levels back into the normal range. Know what the effects of iron deficiency in children are?

    http://www.cdc.gov/nutrition/everyone/basics/vitamins/iron.html

    * Feeling tired and weak
    * Decreased work and school performance
    * Slow cognitive and social development during childhood
    * Difficulty maintaining body temperature
    * Decreased immune function, which increases susceptibility to infection

    All of which could easily make the core problems of autism worse.

    That is one nutrient – now imagine what happens when your child is having chronic issues absorbing more than one nutrient.

    What happens when a child is also having problems absorbing zinc. If you want some fun, go look up what zinc deficiency can cause and then think about what would happen when you are deficient in both zinc and iron. Again, all three of my children require zinc supplements.

    Now add in problems with processing protein and deficiencies in a cholesterol (and and a side effect, vitamin D) and I think you can see where I am headed. Each of these deficiencies can be compounded and made worse by the others.

    All three of my children have problems with all of these nutrients as well as others. What do you think the lack of the nutrients did to their normal development when they were very young (say less than two)? If you want a reference for what this can look like, then look at what happens to people with untreated celiac’s.

    Fixing deficiencies like these (if possible) might well do far more than just make a child feel more comfortable. It might be able to help the child develop along a more “normal” course.

    The bottom line is that my children are not unique in this regards. There is a substantial body of research that show that similar deficiencies also appear in other children with autism.

    And all of this is completely ignoring the flip side of the coin which is how the body responds to particles that shouldn’t get through the intestinal barrier.

    • You’re not actually disagreeing with me MJ (not as far as I can see). Your children are examples of children who have serious gut issues, and that’s fine, I wouldn’t dispute that at all. However, the issues you’re talking about can be verified by blood tests (am I right about that – otherwise how would you know what they are deficient in?), but it would be incorrect to say that all autistic children have the same problems as your children (or do you disagree on that?). I really am quite open-minded to what new research will reveal about possible links between the gut and autism – I could easily imagine that gut issues may indeed cause autism in some people, but I am yet to see or hear of sound research that has shown such a thing. In no way whatsoever am I saying it is impossible; I am interested to see where the evidence and science takes us!

      • MJ says:

        “However, the issues you’re talking about can be verified by blood tests”

        Yes.

        “but it would be incorrect to say that all autistic children have the same problems as your children ”

        I would not go anywhere near all (or even a majority) but I think that there is a sizable population that does have the same or similar issues.

        “I could easily imagine that gut issues may indeed cause autism in some people, but I am yet to see or hear of sound research that has shown such a thing.”

        Cause would be a very strong word to use but I think there is some evidence that GI problems could contribute to the development and continued appearance of autism.

        I think that is were we disagree. You say –

        “This lessening of the severity of the symptoms though does not mean the autism is being fixed, it is a natural consequence of increasing the “comfort” of the child: If a child already has significant sensory, communication and behavioural issues, pain and general un-well-being is only going to make them worse.”

        and what I am saying is that I think that GI problems can cause far worse problems than that. Ongoing nutritional deficiencies can cause developmental problems (biological ones) and these problems might well contribute to the appearance of the behaviors of autism.

        I think we might also disagree with the potential impact of correcting these imbalances. While correcting these imbalances is not going to “cure” autism or (more specifically) remove the behaviors of autism and teach the missing skills, it very well could help “cure” the abnormal biology that contributed to the behaviors developing in the first place.

        Or in other words, correcting the GI problem won’t teach new behaviors but it could help remove the biological impetus behind the behaviors and allow new behaviors and skills to be taught more readily.

        So you tell me, would you agree with the above statements or would you disagree?

      • It looks like our disagreements are a matter of degree rather than a matter of kind.

        There are also underlying questions here about what autism actually is. If certain cases were “simply” a nutritional deficiency, that could be addressed by fixing nutrition, then calling it “autism” would appear to be a misnomer (it would rather be “a nutritional deficiency” – or whatever the specific name for the deficiency is, such as anemia – that was incorrectly labeled). That is the same sort of reasoning which may shift conditions out of “autism” once it has a clear cause – such as Landau-Kleffner syndrome (which was arguably never autism) or Fragile X Syndrome (which is currently considered autism but has been debated whether it should be because it has a known cause). Though autism is not defined by what does cause it, it would seem that knowing a distinct cause shifts it out of something that is defined predominantly by observable symptoms (“autism”) and towards a particular condition with tailored treatments (and potentially cures) that address those particular causes.

        These problems with definition and boundaries are reflected in the origins and history of the condition, as well as in the continuing shifts found in diagnostic manuals. And are bigger problems than I can address in the space of a comment, so please resist the urge to turn this particular comment section into an elaborate discussion about what is and is not autism. I’ll reserve that discussion for an entire post, when I’ve had the chance to put further research and thought into it. I’m not expressing a strong opinion about this one way or the other right now, I am just raising the issues and questions.

        How about we just agree to disagree about the gut problems, and acknowledge that there are some rather interesting and impactful issues underlying our disagreement?

      • MJ says:

        I think there is a large difference between conditions that can have co-morbid autism such as Fragile X (Fragile X is not considered a form of autism, btw), conditions that are easily confused with autism, and autism with a known cause.

        But, as you say, that can be a discussion for another day.

      • Indeed, and interesting reply. Definitely food for thought.

  2. sharon says:

    I’m on precisely the same page as you at this stage of the game. It occurs to me that at the time of develoment in utero that ASD may be triggered surely other organ development apart from the brain could also be impacted, such as the gut? It’s not difficult for me to understand that many children who have Autism also have co morbid illness. What I struggle with is how diet could impact neurology as profoundly as those who support the bio model claim and yet science seems unable to replicate these results. My son who was ASD from birth has never had any clear gut issues, (he did have reflux for quite a while.) It often concerns me that those who claim diet modificiation and various other off- beat treatments (chelation, Lupron, Fecal transplants) get given all the credit if a child improves while the natural ageing factor and simultaneous behavioural treatments get ignored. I have observed this phenomenon on some blogs recently.

  3. Jack says:

    While its not an area of specialty for my research I often supply microbial samples for other researchers looking at human gut microbial interactions. There have been many cohort studies looking at gut microbial population differences, pre and pro biotics and the possible consequences of there presence or absence.
    For instance there has been a few paper on Faecalibacterium prausnitzii with a lack of this microbe giving a propensity for bowel problems, mainly crohn’s. Along with a a few Bifidobacterium species.
    However modifying your gut micro-biota is almost impossible. There are between 300-400 different bacterial species in the lower intestine and concentration of around 10^4 to 10^7 CFU/ml. Changing this population is almost impossible. The small intestine is about 100 ml, so to compete and replace the existing bacterium would require a lot of effort. Most bacterial pastes are about 10^12 CFU/g. They also usually don’t taste or smell very nice.
    So, I basically agree that they are two different issues.

    • MJ says:

      “However modifying your gut micro-biota is almost impossible.”

      What happens to your gut flora when you take an oral antibiotic?

      • Jack says:

        Its impossible to say what affect any given type of antibiotic would have on an individual’s gut micro-biota. It also depends on the antibiotics mode of action. Even within a species some sub-species can have resistance to antibiotics. During and after a treatment the population reestablishes a new equilibrium.
        I still agree with my point “modifying your gut micro-biota is almost impossible.” However I probably should have said “purposely modifying your gut micro-biota to achieve a pre-planned profile is almost impossible.”
        The bacterial population is always in flux and is based on diet, medication and lifestyle. Trying to change this against what the bacteria deem is optimal is always going to be difficult and pointless.

      • MJ says:

        So what do you think of some of the recent studies that suggest that taking pre or pro biotics can have positive health benefits?

        For example, what about this review in Pediatrics that says that probiotics have been shown to be modestly effective in RCTs for treating some conditions.

        http://pediatrics.aappublications.org/content/126/6/1217.long

        It also says that “Probiotics are supplements or foods that contain viable microorganisms that cause alterations of the microflora of the host.”

        I am not trying to argumentative here, I’m just trying to understand where you are coming from.

        It has been my understanding that your gut flora can be impacted by a variety of factors, such as the ones you listed. But it has also been my understanding that it is possible to wipe out large parts of your flora with repeated doses of antibiotics and that your flora might can take a while to regrow after that and might not have the same diversity that it did before.

        It was also my understanding, based on articles like the above, that probiotics can have beneficial effects by presumably making your gut flora mote diverse and healthier. That might be the wrong way to put that but I think you get the idea.

        But you are suggesting that purposely modifying your flora is almost impossible and I am having trouble reconciling the two views.

      • MJ, here’s a very good science post that explains how probiotics work (and don’t work), and why many of the claims made about them are highly misleading. It also talks about probiotics working after antibiotics, but that appears to be the exception to the rule – that otherwise probiotic use can be either pointless or even lead to problems. Worth a read: http://www.sciencebasedmedicine.org/?p=344

  4. Bill says:

    I am endowed with Asperger’s.

    Last June, researchers at the Imperial College London announced that a urine test could discriminate between unique gut bacteria metabolites which are excreted in the urine of autistic subjects, their siblings, and non-autistic individuals. I have recently seen articles where researchers have identified obvious differences in the populations of gut bacteria in autistic individuals. It would appear one wouldn’t have to rely on anecdotes or “gut feelings” to come to the conclusion that there is indeed something unique about the digestive processes in a large number of autism spectrum people.
    I do not want to get into the indelicate details, but I myself cannot help but notice that I have a different relationship between food and digestion than other people, which manifests in all kinds of food sensitivities and migraine-like illnesses.
    However, this does not mean that autism causes gut problems, or that gut problems cause autism. What it probably means is the same missing protein, or the same extra protein, or the same protein which is still turned on when it was supposed to turn off in utero, is simultaneously affecting both brain growth and intestinal processes, or alternately affected brain growth in utero, and now affects intestinal processes.
    If it is a protein which is supposed to be created within an individual cell’s metabolism, but is flawed by a genetic flaw within each and every cell, well, you are most likely never going to be able to do much about it, since it is awfully difficult to deliver tiny doses of medicine to each of millions of cells. Trying to deliver medicine is always compromised by the liver and kidney trying to rid the body of it, barriers like the blood-brain barrier blocking it, the immune system response, and the possible toxicity, i.e. what might be helpful for one kind of cell, might be harmful for another.
    I accept the strong likelihood there will never be a cure for my unique genetics. I certainly do not expect a cure which will “fix” my brain- once something has grown incorrectly, you can’t get it to “ungrow” and then regrow- just as you would never expect a pill which could fix a harelip or give someone more attractive ears.
    I would suggest to parents based on my life experience and what we know about gut problems; some “picky eating” may in fact be common-sense aversion to foods which cause real pain and illness. I humored my wife for years, eating a balanced, normal, typical, common sense diet, and I suffered terribly for years with headaches and nausea and days off work. After I was aware of my Asperger’s, and the unusual diet problems we face, I had an excuse to tell my wife “NO, I’M NOT EATING THINGS I DON’T LIKE ANYMORE!” She expected my health to decline, and even I feared it a bit, but after I stopped eating foods I didn’t like, my health improved, chronic skin conditions cleared up, and I stopped having constant headaches and nausea.

    • Very interesting insights and information there Bill! Thank you – as always – for sharing them.

      • sharon says:

        Yes thanks Bill, that supports my thinking too.
        BTW I really like your opening line, “I’m endowed with Aspergers”.

      • Bill says:

        A reply to Sharon…

        I use the line “endowed” for two reasons:
        a: I suspect many of us on the spectrum seldom “suffer”, which is the term I see so often used; I only recall suffering when I was bullied, and that certainly isn’t caused by AS- it’s caused by bullies! Many of us Aspies turn our logical minds into lucrative careers which others would envy, though I admit some of my relatives are rather cursed with AS.
        b: I want to warn people that I’m coming at you from a different perspective and insight, and I want to apologize in advance if I unintentionally offend neurotypical sensitivities.
        I most definitely do not kowtow to political correctness!

      • sharon says:

        Bill, I am so glad you feel that way and I will be working hard to encourage my son to think the same. As Tony Attwood says, “you dont suffer from Aspergers, you suffer from other people”.

  5. KDL says:

    Very interesting post, and very interesting comments. My daughter does not seem to have any particular gut issues, though we’ve never had her specifically tested for any. She will eat just about anything – including sea cucumber and lutefisk (sp?) at two recent ethnic celebrations we attended – notable exceptions being mint and (usually) milk. The latter seem to be more sensory influenced than nutritional. Still we have heard others who are impacted by this, so I am always curious if there is some subtle connection. I like Bill’s theory about the protein affecting brain development and later the gut – a similar cascade occurs in Fragile X where the protein affects the brain and later sexual organs, and other physical characteristics…so that makes some sense to me. I still wonder if that is one form of “autism” vs. another since currently autism is defined by a set of behaviors that could, after all, be brought on by a variety of causes…which is perhaps why we have such trouble pinning it all down. Food for thought…no pun intended.

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