Rod Dreher

Rod Dreher


Is the ‘autism diet’ really ineffective?

posted by Rod Dreher

Yesterday I saw a story about a study showing that the “autism diet” (gluten-free, casein-free) had not demonstrated effectiveness in treating kids on the autism spectrum. I passed that along to a Philadelphia friend and reader of this blog who has been following the diet to treat his young daughter, who has Asperger syndrome, which is on the autism spectrum. He sent me the following reply, which I found so interesting that I asked him to revise it to protect his family’s privacy. He did, so I present it to you here for consideration and comment:

Thanks for sending that. Always good to know what’s out there being said. Keep ‘em coming.
But, heavy sigh. As I am embarrassingly quick to say, and thus as I’ve probably said to you, and so this comes with apologies in advance for being a broken record and perhaps preaching to the choir, it drives me absolutely NUTS when gluten-free casein-free (GFCF) is referred to as “the” autism diet. It’s hard to know where to begin. If you will permit me a rant…
1) As I would have said prior to this study that, thinking anecdotally from my own experience, just going GFCF only helps 1/3 to 1/2 of kids with Autism Spectrum Disorders (ASD). GFCF just isn’t enough in many cases and nobody should claim or expect otherwise. Some kids respond, some don’t, and nobody knows until you try. The closest I see this article comes to acknowledging that is Stewart’s comment, “‘I think we need bigger studies that are more inclusive,” she says, perhaps including children with GI issues. ”There could be subpopulations that benefit.” In other words, if that hypothesis is correct, and I think it is, you roll the dice. Your kid is in the subpopulation that might get helped by GFCF, or not. Nobody knows the overall percentages in the population, and a study this small won’t pick it up. Too bad the article’s headline didn’t allow that nuance. The headline perpetuates misinformation by obscuring this point.
Our ASD daughter, I think, was in the subpopulation that got helped. I know that’s easy to dismiss as yet another parental anecdote, but what else can I offer?
When we went GFCF on Easter 2009, within the next two weeks, 10 or 12 people (neighbors, the school principal, etc.), who had no idea what we were doing with the diet at that stage and who were thus an objective reality check, commented that our daughter suddenly seemed brighter and more engaged. “She looked me in the eye and called me by name for the first time, what are you guys up to?” And lots more like that, from zero to sixty, in the fortnight after GFCF. What am I supposed to do with that? I know correlation isn’t causation, but am I also to deny that we saw some smoke and so reasonably suspect fire?
2) But that’s not the bigger issue. We’re not told the details of the diet in this study, but for the vast majority of parents I meet online and at autism groups, going GFCF means switching from one set of industrial processed convenience foods to a different kind of industrial processed convenience foods. That’s what it meant for us too at the beginning. Instead of buying Cheerios, you buy some sort of amaranth quinoa O from the supermarket cereal section. Instead of buying Kraft macaroni and cheese, you buy organic luv-a-bunny spelt macaroni-n-cheez, or equivalent. In other words, most GFCF kids are still in sugar and corn-syrup land. They are still gorging on soy and food additives and preservatives. No attempt is being made to heal their intestinal ecology. Basically, going GFCF is like buying a Prius instead of walking – and I say that as a Prius owner – for both are superficial solutions that attempt business as usual, and which are dangerous because they both mask the underlying profundities. The self-righteousness of the stereotypical Prius owner is insufferable because such people think they are doing something good, but they are actually perpetuating a larger problem that they’re not seeing. A Prius is still a car, and, in our civilazaiton, few know how to use cars in moderation. A Prius is still part of the oil economy, still a metal beast that, when taken to scale, destroys pedestrian-friendly community-building neighborhoods. So just as a Prius isn’t a profound enough solution to our energy and community issues, neither is GFCF a profound enough diet. A Prius will help a little, and so I bought one, but it can only be a first step or it’s actually being co-opted by the beast. Ditto GFCF – if not followed by further rebellion against industrial food, I think it’s a bad joke, and a joke with tragic consequences, in so far as the public is lead to believe they know what “the” autistim diet is and parents mistakenly think they’re doing all they can for their children.
3) Three conversations I’ve had with conventional experts stick in my mind as relevant to this discussion. Conversation #1: Last week I’m on the phone with our other non-ASD daughter’s pediatrician [a staff doctor at our local famous teaching hospital]. We’re discussing why both our daughters keep testing positive for arsenic in their urine. Can the doctor refer me to a pediatric or environmental toxicologist who can help us investigate our home? “No, there is nobody like that in our city.” [And our city has, what, four teaching hospital medical schools!] [And the doctor is wrong, by the way, sort of - I found a consultant who can help, but through a homeopath, not a mainstreamer; this guy is good and more mainstream scientific than the homeopath who referred me; web link on request ] Anyway, my question to the pediatrician: “Ok, younger daughter has 135 micrograms of arsenic in her latest test. Is that below or above the safe threshold? And if we tested 100 other kids in your practice, would they have comparable levels, or are our kids uniquely afflicted?” Pediatrician’s reply: “Nobody knows. Not enough studies have been done. Nobody makes money on this kind of thing, so nobody really has looked into it.”
Conversation #2, sometime last year, downtown at the same famous teaching hospital, talking to a pediatric nutrionist. I have taken our younger non-ASD daughter there to get a second opinion: will her older sister’s ASD diet be ok for the whole family as well, especially younger sister? will younger sister get the nutrion she needs? Nutritionists response: having looked at a one week family food diary and submitted it for analysis, she is stunned by the levels of vitamins and good minerals in younger daughter’s diet. She has practically never seen a kid so free of chemicals and preservatives. She’s worried about our [everyone but the ASD daughter's] raw milk intake, but is otherwise impressed. So I lay aside the raw milk conversation for another day, and ask her: does she think this diet will help ASD daughter? Answer: she has no idea but “mainstream medicine has nothing really to offer these people [parents of ASD kids], so you might as well try it.” Conversation #3, at an ASD conference last year at a nearby university. I’m talking to a big deal teaching hospital psychiatrist about alternative medicine approaches to autism in general, diets included. His response: “many of these things are promising but not proven.”
What do I take from those three conversations? Mainstream medicine doesn’t have a heck of a lot to offer ASD parents aside from ABA behavioral therapy. The honest experts know that and are relaxed about admitting it, and they’re busy trying to fill in the gaps, and they’re willing to be conversational about the gaps in knowledge and the nuances of what’s promising. But many other so-called experts, especially front-line service delivery personnel with very specific applied training, are insecure about admitting how little they know,or are not curious, and/or don’t know that there is so much they don’t know. I’m glad somebody is studying GFCF, just like I hope somebody eventually gets around to studying the arsenic (some places are promising on the environment stuff – eg http://www.mountsinai.org/patient-care/service-areas/children/areas-of-care/childrens-environmental-health-center). But the problem is, the gap between “mainstream” and “alternative” is so wide, that I do not trust the mainstream types to actually ask the right questions and go deep enough. They’ve usually never heard of Sally Fallon (http://www.westonaprice.org/) or Natasha Campbell-McBride (http://gapsdiet.com/), and equivalents, or, if they have heard of them, they’ve often got snippets of half-remembered caricatures shaping their views. As our family knows from our experiences with Natural Famly Planning (I refer to the derisive snort most mainstream health practioners give towards Catholic practice, as compared to the sound science they don’t know they don’t know about which is coming from places like http://www.creightonmodel.com/), or as anyone should know from climate change or the current oil spill in the gulf, and a thousand other examples, that scientists and doctors are humans and subject to all the usual subjective epistemological blindspots. And so unless and until I meet a mainstreamer who actually understands GAPS or Weston Price and studies those schools of thought as they are actually supposed to be practiced (eg, no false presentations of the Weston Price as if it’s pro-high fat per simplicitur), I will keep experimenting with “alternative” approaches, because ours at least are not hurting and they may be helping. My standard of evidence might not be enough for an insurance company or a public health policy, for I accept it’s far from slam-dunk proof, but it is enough for a practical minded parent asking “what may help my kid right now,” and it ought to be enough for an honest scientist looking to create a research agenda.
It’ll be interesting to see where ASD studies are in ten or 20 years time. After that conference where I spoke to the psychiatrist, I had lunch with a guy I’d met there who had an Aspie kid in his 20s. The premise of the lunch was supposed to be that this older dad had been through the paces, and he was going to tell me what I had to look forward to, and offer fraternal consolation and advice. But within about ten minutes, the conversational dynamic had turned around. It became clear that having an Aspie kid in 1989 was different in important ways than in 2009, and that I knew things he didn’t. So please keep sending me studies like this one, keep me stimulated from outside my bubble, and let me not get stuck in my ways. Keep me supple and evolving, so I’ve grown in 20 years too. But let everyone else be humble too, and it is surely a safe bet that many things regarded as alternative now will be mainstream in 20 years. Which ones? Who knows. But that only gives me more, not less, incentive to try whatever might work now.

Please leave your comments below. Autism is a subject that tends to bring out the worst in people, so please be civil.



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alkali

posted May 21, 2010 at 5:15 pm


Seth Roberts is a blogger who has become mildly famous for having performed a number of “self-experiments” on his sleep pattern, diet, etc., which he chronicles on his blog. There was a post on his blog some time ago that indicated that someone had had good luck clearing up their persistent acne by regularly washing their face with water only, i.e., without soap. A commenter noted that there’s no basis to believe that would work without a controlled trial. Roberts lit into that commenter, saying in substance that there is no reason on earth that someone with persistent acne shouldn’t try that: there is no harm in it, and apparently it worked for someone, so the worst that could happen is that it doesn’t work.
Likewise, I have no idea why a GFCF diet would be of any benefit to a child with ASD, but there is no harm in trying it, and clearly some people think it helps. If it doesn’t work, you can always go back to eating Cheerios.



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kenneth

posted May 21, 2010 at 5:19 pm


Under the constructs of “Evidence-Based” medicine, nothing is shown to be superior to placebo, so no therapy is worth trying. The HMOs of course love that sort of thinking. It also produces doctors who have no inclination or ability to problem-solve outside of the box. If a symptom or therapy isn’t within their algorithm or flowchart, it simply doesn’t exist to them, they write it off as voodoo. There’s simply no way around the fact that you have to become your own expert, at least in the issues affecting you and your family. You have to strike a tough balance between the hidebound dogmatism of the doctors on the one hand and the really flaky pseudoscience and quackery on the other.



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stefanie

posted May 21, 2010 at 5:19 pm


Point #2 is really significant (the one about substituting one set of processed foods for another.) Instead of all the processed food, why not go “paleo” – IOW, lean meats (closer to game the better, like poultry, lamb and rabbit), boiled-bone soups (for calcium), vegetables, berries and other low-glycemic-load fruits. No beans, corn, wheat, dairy (although some do use raw milk.) I know that it might be hard to get children to eat a diet like that, but it also can be very hard on a child to be on the spectrum.
Personally, I would change one thing at a time (like going wheat-free for a month or so, then casein-free also if the wheat-free thing didn’t seem to work.)
Perhaps being on the spectrum doesn’t have to automatically be a disabling condition. With careful planning, it seems to me that dietary changes could be quite useful. And it doesn’t hurt *anyone* to eat less processed food.



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Richard

posted May 21, 2010 at 5:21 pm


Two years ago I left the finance industry and co-founded a Christian school for children with learning differences. We have a number of children with Asperger’s, ADHD, and the like.
I sigh with your correspondent in that parents will take the headline and as meaning the Autism Diet isn’t even wortth trying. The numkber of parents who send their kids to school with high-fat, high-sugar foods with all kinds of dyes and preservatives is astounding. You can prtactically see their bodies’ insulain resistance, and you can definitely see their lethargy and dis-engaged behavior.
One of the mothers – she is the mother of five, four of whom have learning differences – gave a talk to the school about how her kids benefit from less processed foods, more fresh veggies, and higher protein foods, especially in the morning. The apathy was astounding.
So I sympathize.



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Grumpy Old Man

posted May 21, 2010 at 5:58 pm


When the situation is pretty desperate, and conventional practice doesn’t have good solutions, people will latch on to anything. Most of what they latch on to will be quackery or at least ineffective.
However, if what one latches onto is not harmful (which includes being too expensive), there’s not much of a down side.
Anecdotal evidence of improvement has no probative value, but if one’s own kid improves, proof be damned. That’s the dilemma.
That said, I have a cousin who had a social disability somewhat similar to autism. After years of various efforts, some dietary changes and megavitamins seemed to work wonders. The kid has blossomed and is now studying science at a good college. Effective treatment? Coincidence? Normal growth out of the problem? No one knows, but he’s still taking the megavitamins.
Life is messy.



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Jeffersonian

posted May 21, 2010 at 7:09 pm


Nobody makes money on this kind of thing, so nobody really has looked into it.”
And that’s the rub. Same goes for celiac disease– not much research because there’s not much profit in it.
organic luv-a-bunny spelt macaroni-n-cheez, or equivalent.
NO!! DON’T!! Spelt is NOT GF, as it is a form of wheat and contains significant amounts of gluten. Do NOT let your helpful-yet-misinformed store employee fool you because you are just asking to be contaminated.
A full list of GF and non-GF foods can be found at http://www.celiac.com. Casein I can’t help you with, but I’m sure there’s info online somewhere.



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Martin Matthews

posted May 21, 2010 at 7:16 pm


Well said!!! Thank you, thank you.
Indeed, it’s important to understand that Diet for Autism comprises omitting known problematic foods/substances and adding necessary nutrients. Multiple studies indicate that nutrient deficiencies are common with autism. Being attentive to diet (what children eat) is 100% common sense.
Gastrointestinal issues are but one reason to be strategic about food choices with autism; there are many others, and many dietary approaches known to be helpful. The avoidance of gluten and/or casein, or the GFCF Diet, is but one dietary strategy for helping autism – there are several other diets that prove very effective.
To only restrict foods without conscious attention to the purpose and intent of what’s meant to be a healing intervention is unsafe and NOT the onus of autism diets. Rather, autism diets are a Nutritional Intervention – focus on helping the body heal through food choices (as your comments so aptly point out – ala Weston A. Price, etc.)
This is ancient wisdom & modern learning. A nutrition expert from California has synthesized the autism nutrition information in an award-winning book called “Nourishing Hope for Autism.” It’ll help anyone realize the depth of the scientific (and practical) rationale for autism diets.
THOUSANDS of parents across the world ARE and HAVE effectively applied nutrition-focused healing diets for their children with autism, and thousands of children are happier and healthier because of it.
There’s a great article http://generationrescue.com/autismdiets



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John E. - Agn Stoic

posted May 21, 2010 at 7:56 pm


I’m thinking that it can’t hurt and might help, so why not?
Also, reducing processed foods seems like a good idea just on general principles.



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Jeremy

posted May 21, 2010 at 8:34 pm


Richard,
What’s the name of the school you co-founded? Where is it? I’m just curious (I have a brother with asperger’s).



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Bobbi

posted May 21, 2010 at 8:55 pm


Rod, I have been a fan since your Dallas days, and I read this post with great interest.
I have a daughter with autism.
We have tried differing versions of “The” Diet more than once, with no discernable results, but we know people who swear by it, and I believe them.
We do our best to eat a lot of raw food and we do notice a difference in our daughter when she eats too much processed food and junk. (That’s also true of our other kids.)
I especially appreciate your last paragraph. In my efforts to help my daughter, I have run across many wonderful people. I have also run across Little Old Ladies of both genders who are appalled/offended if you don’t do Exactly What Worked For Them. They will tell you that you are a bad parent if you don’t march behind their particular bandwagon, and it hurts.
I applaud anyone who is doing something that is helpful to their child, or who is searching for what will work.
Thanks for airing different points of view.



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Andrea

posted May 21, 2010 at 8:56 pm


I once interviewed a family that had tried this diet and the mother said it had made her daughters healthier. The whole family had various things wrong — food sensitivities or allergies and other things that were haywire. The middle daughter is severely autistic, to the point where she doesn’t speak and will never be able to live on her own. When she was little the older daughter had OCD and mild hearing loss and some learning issues but she’s graduating with honors from high school this weekend. The youngest daughter has no issues except allergies. It didn’t cure any of the kids but it apparently made them feel better so their behavior improved and they were able to concentrate better.



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Richard

posted May 21, 2010 at 9:16 pm


Well, I don’t want to turn this thread into a commercial, Jeremy, but it’s Elijah School.



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Jean Smith

posted May 21, 2010 at 9:43 pm


I learned of the Feingold Diet over 30 years ago when our 3 year old daughter was showing signs of ADHD. The changes in her behavior were amazing and immediate. Synthetic food dyes should NEVER be allowed in our diets.



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TTT

posted May 21, 2010 at 9:59 pm


Under the constructs of “Evidence-Based” medicine, nothing is shown to be superior to placebo, so no therapy is worth trying.
Certainly nothing that fails to exceed placebo results is worth trying.
If you’re going to offer a treatment method to desperate parents, you ought to be giving them something that has a real and reliable chance at working, not something that will either crush them with false expectations or that can lead them into dangerous delusions of wish-fulfillment (i.e. chelation therapy, facilitated communication).



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Peter

posted May 21, 2010 at 10:56 pm


Anything to improve gut health helps. Unfortunately, for ASD, token, or even significant dietary changes may be too little, too late. It starts from before birth.
I’m all for the Weston Price approach. Gluten is not so bad on its own, but with a weak gut, it can’t be digested well, and we all have weak guts. Casein in most dairy has been denatured and is not digested well either. Processed foods have been fractionalized and re-assembled for marketability, and are missing co-factors and complexes necessary for proper assimilation. The modern GI tract is a mess, and we need to redeem it.
The recent health care narrative has been mostly silent regarding diet. Inflammatory/auto-immune disorders such as MS, diabetes, RA, celiac, chron’s, AS, PA, graves, etc. are burgeoning — all due, in part, to our modern diet. I believe ASD might fall into this category.
ASD parents need something immediate and effective, so don’t hold your breath for studies. Those considering a baby would do well to visit Weston Price Foundation’s web site. Follow their guidelines as much as practicable. Breastfeed. Look at vaccination issues carefully. Ferment food and milk at home. Soak grains.
My unworthy prayers to ASD families. There are things you can do to reclaim your children’s birthright. It starts with the gut.



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Anon prof

posted May 21, 2010 at 11:33 pm


It is important to note that these special diets and vitamin regimens are not without their own costs and risks. These diets tend to be extremely expensive, lead to a decrease in bone density in a lot of children, and the safety of megadoses of vitamins is unclear (there is mounting evidence that 400IU of vitamin E can increase the chance of some cancers).
While you may think you are helping your child, confirmation bias is notoriously difficult to rise above. That’s a big reason why we scientists have developed the protocols we have: to minimize the chance that we are fooling ourselves. Double blind trials, rigorous statistical tests, and peer-reviewed reporting are necessary elements of sound studies of potential treatments of Autism. They aren’t perfect but it has an impressive track record.
I generally find the writers over at scienceblogs insufferable, but I think the blogger Orac makes a number of important points in this post:
http://scienceblogs.com/insolence/2010/01/gut_disorders_and_autism_a_new_consensus.php
I’m sure that raising a child with autism is extremely difficult. But pseudoscientific treatments are not necessarily harmless.



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Peter

posted May 22, 2010 at 3:21 am


@Anon prof – You illustrate precisely what the Rod’s Philadelphia ASD parent complains about. The blog article you cite snarkily guffaws against a couple other convenient strawmen. Maybe you’re just missing the point.
The question is whether is a GFCF diet or study is worthwhile. The Aspergers parent thinks not. These flawed studies focus on acute clinical gut disorders or a couple possible antagonists rather than expressions of more subtle immune disorders caused by poorly balanced intestinal flora.
To caricature dietary regimens as expensive and dangerous is not helpful. The emotional load to the family of an ASD child is staggering. The diets (Weston Price, GAPS) that the parent cites are more like cuisines, not unlike your grandparents normal fare — you know, back in the days before autism.
The intractability of autism research and treatment is emphasized by the utter futility in crafting decent studies. There are way too many entrenched interests, agenda, and presuppositions. Scientists carry boatloads of confirmation bias, and are experts at concealing it in their methodology. Parents are faced with guilt at the suggestion that they could have done better by their child. This is the mess that the parent needs to rise above, and quickly.
Again, prayers for this parent and others with ASD kids. And sauerkraut, pickles (lacto-fermented) and yogurt (only homemade — you want bacteria mutated to your home environment), less frequent baths, lots of sunshine, RO water, a thumbnail-size piece of kombu seaweed per day, and lots of love.



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Grace

posted May 22, 2010 at 4:03 am


Funny, I was just discussing this with my DH today as our family is moving towards the GAPS diet. It reminds me of the claim way back when that sugar does not really make kids hyper – but then it turned out that the study had used some kind of artificial dye solution for the control group — which has also been linked to hyperactivity.
For me the answer is pretty simple – I have a child who keeps sneaking certain foods at every opportunity. I have ALWAYS been able to tell when she takes them because of the change in her personality. That’s sufficient proof for me.
It is not as clearcut with my other kids, but they have more food sensitivities than she does. Still, there is a noticeable difference in all of us when we eat the typical American processed crap diet versus whole foods with highly allergenic foods left out.



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Bluecat

posted May 22, 2010 at 6:20 am


Great reading! My son, now 26, has been on GF since he was 12 and CF since he refused to drink cow’s milk age age 2 when he developed autism. In the UK it is I think even harded to convince mainstream docs of the benefits of so-called alternative options. We were wiorking at this in the 80′s when there was hardly any informatioin around. As stated in a response above, we really knew when my son had had something he couldn’t tolerate. His behaviour changed immediately. When he was small, we didn’t have the internet, but luckily found a doc who believed us. I have prooof that he is not cured by these interventions, but I believe he has a better quality of life and that is all I want for him and for us as his family. I am sure that sometime in the future these ‘quack’ treatments will be commonplace and standard for ASD and other similar syndromes. I couldn’t wait for science to come up with this!
I am involved in biimedical research into ASD and it is a very slow process here, no funding etc, etc, but bit by bit we’re chipping away at the wall and, yes, there is light on the other side. The more scientific evidence we get, the more we can show mainstream that, yes, we are right. I will continue researching and proving this for as llomg as I am able. I have health issues which I am sure relate to my son’s problems. No wonder really, given our genetic predisposition and pkus the environmental insults.
Check our website at http://www.autism-unravelled.org.
Yes, raisimg a child with autism is ‘extremely difficult’ and that’s an understatement. We live this 24/7. Please give us some credibility that we know what helps our kids.



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sis2lis

posted May 22, 2010 at 6:58 am


“not unlike your grandparents normal fare — you know, back in the days before autism.”
What days before autism? Even today, autism is a catalog of symptoms rather than a diagnosis from physiological or genetic testing. Who knows what its incidence was in the past?
My sister, born in 1955, is severely autistic. History shows plenty of so-called wild children, or “strange” relatives relegated to seclusion in the attic, or as in the case of author Jane Austen’s family, farmed out to caregivers; her brother, a maternal uncle, a paternal aunt, and a first cousin’s child all had something wrong with them. And that’s in the family of a famous person, whose life has been studied. What about all those anonymous
people and families whose stories are lost to history?
We simply do not know what was wrong with these children, because families didn’t write or talk about them. Were some of them, or many of them, autistic? Who knows, but it’s certainly a possibility.
So please, let’s not harp on the “autism is a modern phenomenon” theory.
And my Captcha is “said forceful”, which I hope this posting fits.



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Richard

posted May 22, 2010 at 7:11 am


Peter makes a great point: there are so many entrenched positions on ASD, ADHD etc etc (“intractable” is the perfect word)that it gets to be very difficult to even discuss things.
The limits of scientific research become very stark not because science can’t tell us anything, but because without a pharma company or some such willing to pay for the research, it doesn’t happen. The irony is that when new or alternative ideas like the diet come up, they’re called pseudo-scientific!



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sis2lis

posted May 22, 2010 at 7:46 am


“The limits of scientific research become very stark not because science can’t tell us anything, but because without a pharma company or some such willing to pay for the research, it doesn’t happen”
Pharma companies don’t pay for the basic research that builds the foundation for advances in medical science; it’s long-duration and expensive and hard to justify to “results now” boards and stockholders, and they simply don’t have the resources.
Instead, in the US, much of this basic research is funded by the government via
National Institutes of Health on-campus research and grants to universities and other medical research centers like, say, the Mayo Clinic.
Right now, autism is the “medical condition du jour” and is highly visible. One problem a friend of mine who is a medical scientist points out, is the
abuse heaped on scientists by some parents who have their set in concrete theories about what caused their child’s autism, whether vaccines, or diets, or whatever and who won’t listen to anyone who questions their pet theory.
My friend says although interested, she would never go into autism research for that reason. Look into the death threats made against Dr. Paul Offit when he wrote a book questioning the vaccine/autism link if you want an example.
http://www.phillymag.com/articles/will_this_doctor_hurt_your_baby/
Because of my severely autistic sister I do understand the pressures and
stress and guilt that these parents face, believe me, but their more egregious behavior is counter productive to helping their own children, and all people with autism.



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AnitaAshland

posted May 22, 2010 at 7:48 am


I can’t speak to the autism issue but I’ve had celiac disease most of my life and follow a strict GF diet. According to a Mayo Clinic study in 2009, celiac disease is 4 times more common now than it was in the 1950s and for every person who has a celiac DX there are 30 people who have celiac but don’t know it (source: http://www.mayoclinic.org/news2009-rst/5329.html).
When you factor in people who have gluten intolerance but not full blown celiac disease, there are a lot of people who would benefit from going GF. So it’s no surprise to me that a certain percentage of children with autism feel better going GFCF. One of my daughters follows a GFCF diet (she has type 1 diabetes and people with type 1 can have trouble with gluten) and she feels so much dramatically better on this diet.



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Mary Russell

posted May 22, 2010 at 7:56 am


The entrenchment and instransigence works both ways. One valid criticism that “mainstream” physicians (BTW, show me a mainstream physician and I’ll show you someone who has her own opinions and approach to patients different from any other doc) have of alternative types is that they are unwilling to abandon treatments that are proven to be no better than placebo. In this they resemble true believers more than scientists. The author compares attitudes of mainstreamers to kids “on the spectrum” to users of NFP, but that is an invalid comparison. Unlike the autism treatments he mentions NFP has effectiveness rates that have been researched and published in mainstream medical journals.



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TTT

posted May 22, 2010 at 10:14 am


back in the days before autism.
No such days. 30 years ago, the people now called “autistic” would have been called retarded; 60 years ago they would have been imbeciles or cretins; 100 years ago they were naturals and moon-calves.



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ratiocination

posted May 22, 2010 at 11:09 am


A standing ovation for your friend who wrote this. My 6 year old son is an Aspie, and we have watched him change like a ball of soft clay depending on how rigorously we follow his diet.
I also couldn’t agree more about the whole commercialized GFCF food industry…I read the ingredients on these foods and shudder. Nearly everything is packed with cornstarch and sugar to make up for the loss of flavor and texture of gluten. I wouldn’t and couldn’t feed that stuff to my son–nor would it help him, because 1) Most kids who have this problem have the same problem with ALL starches, because they are sooooo complex and hard for a compromised gut to digest; 2) Nearly all corn is Genetically modified by this point in history.
We have been using a diet called the Specific Carbohydrate Diet, or SCD for short…it is more or less the same as the GAPS diet, with a few modifications…and I’m telling you, every time we cheat and give him something he’s not supposed to have…even in minuscule quantities…his symptoms immediately start to rage.
It usually takes well over a week of meticulously watching everything that passes his lips for him to recover fully.
But when we do stick to his diet 100%–note: not 99% or even 99.44%–people swear they really can’t tell that he has Asperger’s. Only we notice his little idiosyncracies, because he’s our son.
Now, when you consider that to keep his diet at 100% means NO STARCH AT ALL, not even TRACE AMOUNTS that you find in things like salt (it has dextrose added to keep it from clumping!)…you begin to see how bone-crushingly difficult my everyday life is. We can’t eat at restaurants, because everything is contaminated. There are no STARCH-FREE convenience foods, except to the extent that you might consider an apple a convenience food…and you can’t serve apples for dinner on a regular basis…
We can’t go to parties or other get-togethers, and if we do, we have to monitor him constantly to make sure he doesn’t eat anything.
We can’t send him to school, for the same reason that this blog post exists–nobody in the mainstream really truly believes that diet is that important, and so they can’t and won’t lift a finger to help…they’d rather hand him a cupcake against my explicit instructions than be bothered with listening to a parent who is obviously deranged.
His siblings and parents have no choice but to follow the same diet, because we can’t have anything in the house that is not SCD-compliant, or he will find it and eat it.
And I say none of this to discourage others from doing what I’m doing–after all, I do it because IT’S THE ONLY THING THAT REALLY TRULY HELPS HIM. I fully encourage others to try the SCD diet. I just am into full disclosure. It’s really, really hard to do this diet.
And there we come full circle, because I have talked to people who tried SCD and they say, “It was really hard, and it didn’t even work.”
Usually when I ask them what foods they were serving, I can discover within 30 seconds or less why it didn’t work for them. Usually they were either removing only 80-90% of the starches, or they were immediately trying to replace them with nut flours, which are too harsh for a compromised gut that hasn’t had a chance to heal yet.
So as immensely tired as I am of keeping to this diet, I am even more tired of the constant “It didn’t work” garbage. If you are trying to fix a piece of complicated electronics, and you can’t be bothered to follow the instructions carefully, your success rate will be low. If you try to make a souffle and don’t follow the exact procedure, you will not have a souffle. If you are going to eliminate all starches from your diet, but you only remove MOST of them, you’re not eliminating all starches. For some strange reason, I could never convince others of this plainly obvious point–even my own husband…
OK, now I’m descending into a rant. DIET MODIFICATION WORKS. But it only works in direct proportion to the obstinate meticulousness with which you implement it.
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Richard

posted May 22, 2010 at 11:30 am


sis2lis, I think you’re wrong about that. If you look at the vast percentage of R&D on diseases and treatments, you’ll find big pharma companies. Large percentages of their R&D budgets are devoted specifically to long-term R&D – if you’re looking for ‘results today’ there are better places to invest your money.
That’s fine with me; they have a vested interest in it, and I’m thankful someone is doing it. My point is that you’ll never interest a pharma company in ‘the Autism Diet’ and you won’t interest NIH either: they consider it to be pseudo-science. In fairness to them, it’s hard to do the kind of double-blind clinical study (that is the industry norm) of a diet because there are almost too many variables to control!
In my admittedly small circle of therapists, doctors, parents, etc. I would guess the number of people who insist upon a direct 100% causality between autism and, say, vaccines is very small. Fringe groups, as always, do a good job of making their opinions known.
I admit that while I am not anti-vaccine, I do not find it comforting that some are made with mercury, a well-known toxin. Some are made with discarded fetal tissue. Poorer quality vaccines are known – with overwhelming evidence – to cause nasty allergic reactions of various types in animals (ask me how I know – five horses and five dogs and a sister who is a vet). So I’m more open-minded about the whole thing.



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Peter

posted May 22, 2010 at 11:37 am


I have a doctor who, when I ask him whether I should continue to doing A, will usually say, “You can if you want. It probably isn’t helping, but if it makes you feel better then continue doing it.”
Faced with the uncertainties around autism, people will try all sorts of things that they think will help their kids. Even if they don’t really cure anything, they make people feel better that they are doing something. As others have said, altering your kids’ diet is going to have positive results whether the kids is autistic or not. so diet responses make sense. And it makes parents feel better that they are doing something besides facing a vacuum of uncertainty.
The danger is giving false hope based on your own anecdotal experience. Leading people to believe they can cure their kids or make their kids seems almost like they don’t have autism if you maniacally control their diets seems cruel, in some ways, if it is just false hope.



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sis2lis

posted May 22, 2010 at 11:49 am


“I think you’re wrong about that. If you look at the vast percentage of R&D on diseases and treatments, you’ll find big pharma companies. Large percentages of their R&D budgets are devoted specifically to long-term R&D – if you’re looking for ‘results today’ there are better places to invest your money.”
I don’t think I’m wrong. My best friend is a scientist with NIH, and is in a position to know, and I believe my friend about this. Sure, pharma does R&D, in developing drugs and doing clinical tests, but the **basic** science research, which can be years and $$$$ in duration, is done as I described, with pharma and medical device companies purchasing or licensing the patents for technologies developed at NIH and via its grants to universities and research institutes in this country. Same is true for Europe and Asia, where governments recognize the benefits of funding this research. My friend is responsible for discovery of a protein that is proving to play a big role in various diseases, including cancer and diabetes, and the patents are sold to drug companies so they can further investigate and perhaps bring the technology to market.



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sis2lis

posted May 22, 2010 at 12:01 pm


For more info on pharma and R&D, see
Big Pharma’s Golden Eggs
Marketing, not research, is now the core of the drug industry.



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sis2lis

posted May 22, 2010 at 12:04 pm


Whoops the link got stripped from my post…let’s try
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/03/AR2008040303377.html
Big Pharma’s Golden Eggs
Marketing, not research, is now the core of the drug industry.



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ratiocination

posted May 22, 2010 at 12:54 pm


back in the days before autism.
No such days. 30 years ago, the people now called “autistic” would have been called retarded; 60 years ago they would have been imbeciles or cretins; 100 years ago they were naturals and moon-calves.
This is a very comforting argument…and in fact, it is partially true…things like this have been around in very small amounts for a very long time. The same is true for cancer and heart disease and lots of other diseases.
The uncomfortable problem with that explanation is that you cannot account for the absolute explosion of cases nowadays by trying to argue that they’re just better diagnosed.
Once upon a time, there might be one autistic person in thousands. A needle in a haystack. Maybe a couple dozen among the thousands of non-autistics had more than just mild sensory disorders, or even Asperger’s.
Now it’s a problem of epidemic proportions. A mother or father of an autistic kid can sit down at a playground and point out to you–just by watching them for 10-15 minutes–which kids are either on the spectrum or are dangerously close. Based on my experience, the sky-high rates of autism and autistic spectrum disorders are actually underdiagnosed. And that is truly frightening.
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Peter

posted May 22, 2010 at 2:44 pm


Note: Another “Peter” (11:37 AM) posted a comment that I wouldn’t want attributed to me. My 2 comments appear before this.



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TTT

posted May 22, 2010 at 3:02 pm


Things like [autism] have been around in very small amounts for a very long time. The same is true for cancer and heart disease and lots of other diseases. The uncomfortable problem with that explanation is that you cannot account for the absolute explosion of cases nowadays by trying to argue that they’re just better diagnosed. Once upon a time, there might be one autistic person in thousands. A needle in a haystack. Maybe a couple dozen among the thousands of non-autistics had more than just mild sensory disorders, or even Asperger’s. Now it’s a problem of epidemic proportions. A mother or father of an autistic kid can sit down at a playground and point out to you–just by watching them for 10-15 minutes–which kids are either on the spectrum or are dangerously close. Based on my experience, the sky-high rates of autism and autistic spectrum disorders are actually underdiagnosed. And that is truly frightening.
As far as cancer goes, I could more easily be convinced of that, since it is a black-or-white diagnosis. Though even that isn’t automatically sinister: many of these are cancers that manifest with age, and that thus are now more prevalent as improved medical care has lowered infant mortality and made formerly plague-level diseases such as polio and TB into nonissues in most of the developed world.
But–and not to appear obtuse–I don’t see how you, or anybody else, could possibly demonstrate that autism is ACTUALLY more common than it used to be. If we don’t really know what autism even is (an understanding that is not helped by the squishiness of the “spectrum” paradigm) and if numerous cultures over numerous centuries have had different terms for different neuro-behavioral disorders, how could we possibly say there are more occurrences now than there used to be? Count up all the misdiagnoses of the past, all the strange unloved children sent off to orphanages and never spoken of again, and we might very well find there has been no change at all.
http://www.sciencebasedmedicine.org/?p=95
Rutter, in order to test the hypothesis that increased diagnostic rates were due largely to changes in diagnosis and surveillance, reviewed literature that contained sufficient information to assess true historical rates of autism. He found that applying modern criteria to these historical records yields similar rates of diagnoses: 30-60 per 10,000. Taylor did a similar review and found the following:
“The recorded prevalence of autism has increased considerably in recent years. This reflects greater recognition, with changes in diagnostic practice associated with more trained diagnosticians; broadening of diagnostic criteria to include a spectrum of disorder; a greater willingness by parents and educationalists to accept the label (in part because of entitlement to services); and better recording systems, among other factors. (Taylor 2006)
Another prediction that flows from the second hypothesis is that if we compare apples to apples – meaning if we look at the same community and apply the same diagnostic methods that were used in the past as documented in a published study, then the incidence should be the same. In other words – if we control for any changes in the diagnostic criteria and surveillance methods the incidence of autism should be stable over time. Chakrabarti and Fombonne did exactly that, comparing the incidence of autism in 2002 (looking at a cohort of children born between 1996-1998) to the same population using the same methods as a previous study looking at the cohort of children born between 1992-1995. They found:
“The rate in this study is comparable to that in previous birth cohorts from the same area and surveyed with the same methods, suggesting a stable incidence. (Chakrabarti 2005)”
If the broadened diagnosis hypothesis is true than it must also be true that as other diagnoses shifted over to autism they would decrease as autism numbers increased. This is exactly what Jick et al found when they reviewed a cohort of boys with and without autism. What was previously diagnosed as language disorder is now being diagnosed as autism, with a corresponding decrease in non-specific language disorders. Shattuck found the exact same effect, so called “diagnostic substitution,” when he studied the prevalence of disabilities among children in US special education from 1984 to 2003. He found that in locations where the prevalence of autism had increased there was a corresponding decrease in the prevalence of other disabilities. (Shattuck 2006)”



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David

posted May 22, 2010 at 3:15 pm


The study, from the Univ. of Rochester Medical School, covered only 14 subjects, none of whom had gastrointestinal problems. The GFCF diet was designed specifically for kids with ASD who have gastrointestinal problems, such as leaky gut. Research from the Autism Research Institute shows that more than 70% of kids with ASD have gastrointestinal problems. Thus, this study did not consider more than 70% of kids with ASD. Hence, it is ridiculous for the supporters of this study to say that the GFCF diet does not help kids with ASD. Poorly conceived studies like this are a waste of taxpayer money. What should have been done was a study of the affect of the GFCF diet on kids with ASD who have gastrointestinal problems. That would have been meaningful. And, it would have shown that the GFCF diet works. We know many families, including our own, who have seen positive results with the diet.



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Peter

posted May 22, 2010 at 4:15 pm


That would have been meaningful. And, it would have shown that the GFCF diet works.
But is it working on the gastrointestinal issues or the autism? No one doubts that it would help with GI issues, but that doesn’t mean it is helping the underlying autism. Unless you believe there is a link between GI issues and causation of autism.



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Richard

posted May 22, 2010 at 4:28 pm


sis2lis, I see your point, and maybe I’m exaggerating my point. My best friends used to be the second-in-command at NIH, so I have a pretty good source too.
My larger point is that the research – whether carried out directly by the pharmas or not is certainly paid for by them in licensing and patents and whatnot. Go look at the types of R&D happening in medicine at any of the top 100 universities and they’re all spending the bulk of their cash hunting golden eggs. Not researching things like diets for autistic kids.



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ratiocination

posted May 22, 2010 at 5:11 pm


Peter….
DING DING DING DING!!!
Give that man a prize! Yes, the science behind these diets points to exactly that. Not only does it show a causative link between gut issues and autism, but a whole host of brain, nervous system and autoimmune disorders.
It’s not rocket science, really: if you have leaky gut, you’ve got all kinds of stuff in your bloodstream that doesn’t belong there. Everyone’s body reacts differently to that situation…for some, it causes depression or anxiety. For some, it causes a major autoimmune freak-out that ends up in asthma or allergies. And for many, it lands them on the spectrum.
So the operative question is: how in the hey does a two year old develop leaky gut???? That’s something that–theoretically–shouldn’t happen. It’s something that normally happens only after a good long time of taking crappy care of your body.
There are lots of potential answers to that question, but in the grand scheme of things, they are of secondary importance to simply dealing with the leaky gut problem, which in turn has a HUGE effect on the nervous system problem. Controlling the diet has proven to be a very effective, if difficult, way of helping the leaky gut.
TTT–again, all of that sounds very logical and scientific in a Mr. Spock-like way.
And a large part of it is no doubt quite accurate.
But what that argument is attempting to say is that somehow 1 in 100-150 people throughout history have had this problem. Those are the current rates of diagnosis for spectrum disorders. I personally know well over two dozen kids who are obviously on the spectrum, but either their parents don’t want to bother paying the money for a diagnosis that is already abundantly obvious, or they’re in denial. You can chalk that up to anecdotal evidence all you want, but I remember what the kids I grew up with were like. It was rare to have problems as obvious as the ones I’m describing. Really, really rare.
Now it’s not rare at all. In any given classroom you’ll have at least one, if not more, kids who are on the spectrum…enough so that the teachers have to take special training to be prepared to deal with them.
No amount of hyperdiagnosis can account for the magnitude of the difference in prevalence.
Now, if you go back to what I said at the beginning, about asthma, allergies, ADHD, depression, autism, etc. all coming from the same source–problems with the gut–and when you look at the incontrovertible evidence that asthma and allergies have exploded in recent years–you may actually begin to see the magnitude of this problem.
The science is there to back it up. It’s been there for two generations or more. But it’s dismissed as anecdotal, despite the fact that it really isn’t. It’s very provable, but the only studies we get are the rubbish that prompted this blog post in the first place.



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Roberto

posted May 22, 2010 at 7:27 pm


I am the father of an autistic son. We, like all the parents of autistic children we know, have tried everything: diet, secretin, etc. We have spent lots of money and time to no avail.
Stuff like this and, likewise, the whole vaccines cause autism thing, hang around because people don’t understand that the plural of anecdotes isn’t data. Are there autistic kinds who adopted this diet and showed improvement? Sure! Did the diet cause the improvement? Given the lack of replication, almost certainly not. Yet to be the parent of autistic child is not only to be desperate it is also to be manipulable, especially by guilt. You wonder if your genetics caused your child’s disability; you wonder if letting him watch television when he was young caused him to be autistic; and you wonder if feeding him Kraft cheese and whole milk made him the way he is.
Then, one day, if you’re lucky, you realize that this is crap and you focus on doing the best by your kid that you can. But there’s always a new batch of parents who have gotten the gut-wrenching news, so the voodoo gains a new group of adherents.



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Mary Russell

posted May 22, 2010 at 9:58 pm


OK, here’s a thought: I have a kid who is “on the spectrum”, who didn’t have his first word until he was 2 1/2 year old, and is now getting speech therapy and ABA through his preschool- mainly to correct his speech delay. I would not try any of the approaches used above because I kind of like him and his personality just the way it is. I am pretty sure, too, that I was and am “Aspie” given my clumsy social skills, but I am soooo grateful that I was not subjected to weird diets and “alternative medicine” growing up and was allowed to follow my own interests (which did not include a social life until much later) and quirks by my very let-it-be parents.



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Sierra

posted May 23, 2010 at 1:47 am


Oh thank you so much for writing this!! I can’t show that study to my son- he is now close to recovered from his ASD thanks to diet and supplements, and I’d hate for him to know that his progress “isn’t real”. What you said about GF/CF and processed foods is dead-on. My son made a lot of progress on GF/CF packaged fake food, but when it became clear that that wasn’t enough, we found the GAPS diet as well, and that was like giving him a turbo boost. The gut is so central to autism in so many cases, but on a deeper level than “stomach pain causing irritability” as many say, or even the opioid theory (which I know was true for my son when I saw him go through withdrawal like a heroin addict).
Gut function is central to both neurological function and immune function. There are over 200 bacteria normally found in the gut that are known to regulate the expression of human genes. There are bacteria and fungi that pump out neurotoxic substances into the bloodstream- substances that change the way sensory input is processed as well as other cognitive functions. But, like you said, there’s no money in looking into this.



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FoodRenegade

posted May 23, 2010 at 8:18 pm


@Sierra –
I also believe firmly in the connection between gut health and neurological functioning.
For those interested in the GAPS Diet (a diet designed to heal the gut), the doctor who “invented” it, Dr. Natasha Campbell-McBride, is featured in a video at this post:
http://www.foodrenegade.com/autism-and-your-gut/



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Sharon Astyk

posted May 24, 2010 at 7:48 am


I have a child with severe autism, and he’s a great kid. We tried the GF/CF diet when he was little and it didn’t do anything for him – he seems to be a healthy kid with no major internal issues who just has autism. It is quite possible that there is more than one kind of autism. I tend to agree that for all children, getting off of processed foods and other crap is a good idea. But I admit, my inclination is largely to agree with Roberto – I don’t blame parents for doing what they think is good for their kids (although I think the folks who do chelation, which often uses industrial solvents are out of their freakin’ minds – talk about toxic!!!), but I do think confirmation bias is a tough thing to balance out.
Sometimes there isn’t a magic answer. That said, I’m happy for any parent who has had good results. But while I think there are credible flaws with this study’s approach, I also am awaiting a useful double blind study that shows some real improvement – because honestly, that is the only way to be sure, the only way we can know that it isn’t just us.
Sharon



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April

posted November 19, 2011 at 11:45 am


Thank you for this well written letter. This explains exactly how I feel about trying the GAPS diet with my daughter.



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CSW

posted January 17, 2012 at 8:20 am


A very interesting discussion…the more I read about all of this, the more convinced I am that there are indeed (at least) “two kinds of autism” –one that is somehow a fundamental part of a person’s genetic makeup and one that this caused by severe gut dysbiosis –and the first kind is probably as rare today as it always has been, while it’s the second that is increasing so rapidly because of antibiotics, unhealthy diets, environmental toxins, etc.



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breast augmentation San diego

posted August 1, 2013 at 9:58 pm


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diatomaceous earth benefits

posted August 14, 2013 at 3:00 am


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Curvedvegetable69.Jimdo.com

posted June 26, 2014 at 10:21 am


Superbe post : pérennise dans cette voie



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