Respectful Insolence

ResearchBlogging.orgOne of the key claims of the “autism biomedical” movement is that something about autism derives from or is exacerbated by the gut; i.e., that there is some sort of link between GI problems, particularly inflammatory diseases of the GI tract, and autism. Although I may not be as versed in the history of this claim as I could be, as far as I can tell, even if this idea didn’t originate with Andrew Wakefield, he certainly did a lot to popularize it. Indeed, a common misconception about his misbegotten 1998 Lancet paper that launched the anti-MMR anti-vaccine movement in the U.K. is that it claimed that there was a link between autism. In reality, its claim was that the MMR vaccine was somehow connected with what he considered to be a novel syndrome of bowel disease and autism associated with MMR vaccination that has been referred to as “autistic enterocolitis.”

Of course, Wakefield’s study showed nothing of the sort and has since been thoroughly discredited, but the idea lives on. Since then, science doesn’t support the concept that there is some sort of unique GI syndrome associated with autism (indeed, “autistic enterocolitis” is a made up syndrome–made up by Wakefield), and it has been very controversial whether autistic children suffer from more GI complaints than neurotypical children. However, in the “autism biomed” world, regardless of whether there is an increased incidence of GI problems in autistic children, the concept of “autistic enterocolitis” is a concept that’s launched a thousand quacks (at least) and continues to support a cottage industry of quackery involving supplements, special diets, and “detoxification” regimens. Indeed, Jenny McCarthy thoroughly embarrassed herself trying to explain the rationale for “biomed treatments” and gluten-free diets, so much so that the video is no longer on the Generation Rescue website after it became the subject of mockery throughout the blogosphere. Moreover, she’s made some rather amazing claims for using diet to treat her son Evan, even going so far as to assert in one interview:

You know, I could in two months turn Evan completely autistic again. I could do it completely through diet. And maybe getting some vaccine boosters. Through diet, I could load him up again with all the things that will aggravate the damage that was done. Right now, what happened now was that I healed him to the point where he got everything back to this baseline level and it stays there like this. But I mess with it at all–boom!

The idea that diet can cure or provide significant relief to autistic symptoms is a seductive one. Note how McCarthy proclaims herself in total control over her son’s autism, so much so that she believes that she could make him autistic again if she lets up for one minute with the woo. A lot of parents also think the same thing, even though a recent Cochrane review of the literature concluded:

In the first version of this review we argued that exclusion diets are not without cost in terms of inconvenience and extra financial cost and limitations on foods of choice for the affected family member and that we could not recommend their use as a standard treatment on the basis of the limited data available. The only trial identified since the first review shows no significant difference between the intervention and control group and, again, we cannot recommend these exclusion diets as standard treatment.

And a recent randomized clinical trial of a gluten-free, casein-free diet (the most common diet autism biomed adherents recommend for autism) concluded:

This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Data on autistic symptoms and urinary peptide levels were collected in the subjects’ homes over the 12 weeks that they were on the diet. Group data indicated no statistically significant findings even though several parents reported improvement in their children. Although preliminary, this study demonstrates how a controlled clinical trial of the GFCF diet can be conducted, and suggests directions for future research.

Moreover, such diets are not without their potential costs. First, there’s the monetary cost, but more importantly such diets may not be entirely benign. Last year, one study linked such diets with cortical bone loss in boys with autism or autism spectrum disorder (ASD). Still, parents put a lot of stock in these diets and swear by them based on anecdotal evidence. Clearly they spend a lot of money on them. Worse, the concept of autistic enterocolitis has become all wrapped up with anti-MMR hysteria, the idea being that somehow the measles virus in the MMR vaccine causes bowel inflamation that leads to some sort of immune response that leads to autism, and many of the “treatments” for this disorder involve “detoxification” to “reverse vaccine injury.” Of course, this concept would take a severe blow if it were shown that children with autism and ASDs don’t have an incidence of GI problems any higher than that of neurotypical children, and that all these special diets don’t do anything.

Given the controversy and the number of autistic children being “treated” with such diets, an expert panel was convened recently to review the scientific evidence about GI symptoms, autism, and ASDs. Despite the hijacking of a legitimate scientific question by the anti-vaccine autism biomed movement, it’s important to know if there really is an association between ASDs and GI complaints or not, and in fact there has been a fair amount of research on this question. This research is what the expert panel reviewed, and the result were two articles, one providing consensus recommendations for how to diagnose and treat children with autism or ASD who present with bowel complaints, and the other being a consensus report on the evaluation, diagnosis, and treatment of GI disorders in children with ASDs. The consensus recommendations basically involve the relatively uncontroversial adaptation of standard of care guidelines for various pediatric GI complaints to children with ASDs. It is the consensus statement that is likely to cause controversy.

For example:

The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established.

And:

In summary, published reports have not established the presence of a unique gastrointestinal pathophysiology specific to ASDs.

The above statements may seem wishy-washy, but in “consensus statement speak” this is about as strong as language gets. It’s a ringing denunciation of the concept of “autistic enterocolitis” as there is. Even more ringing a rebuke to Wakefield is a quote by Dr. Timothy Bule, the study’s lead author, in which he pointed out (quite correctly, from my observation) that researchers and doctors have avoided discussing and studying digestive issues in autism because of their connection with Wakefield’s utterly discredited research, the anti-MMR fear mongering promoted by the anti-vaccine movement, and the gross quackery associated with them. Scientists are understandably reluctant to get involved with a field so steeped in pseudoscience and quackery, lest their reputations suffer as a result or they become subjects of campaigns of demonization and harassment if they don’t find the reults that the anti-vaccine biomed movement wants.

Here’s another one of the conclusions of the consensus panel:

Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

Few studies have examined the effects of a casein-free diet, a gluten-free diet, or combined GFCF diet on the behavior of individuals with ASDs. To our knowledge, only 1 double-blind placebo-controlled study has been published to date.46

In this double-blind crossover trial of GFCF or typical diet in 15 children with ASDs, there were no differences in measures of severity of ASD symptoms, communication, social responsiveness, and urinary peptide levels after 12 weeks.46 Nevertheless, after being informed of the results, 9 parents wanted to continue the diet and reported positive subjective clinical changes while their child was on the GFCF diet. Study limitations included the small sample size and heterogeneity, concerns about compliance and possible dietary infractions by study subjects, and lack of a direct observational outcome measure.

In other words, the quality of evidence available is not very high, with only one randomized, double-blind study, but what evidence is out there does not support the efficacy of these diets for relieving or decreasing autistic symptoms.

Finally, the panel didn’t take a firm stand on whether children with ASDs have a higher rate of GI complaints:

The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood.

The reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% or higher (Table 4). 13,16-25 Prospective descriptive reports from autism clinics have described significant gastrointestinal symptoms in at least 70% of patients,22 data that might reflect a referral bias. In contrast, secondary analysis of a UK database indicated that the prevalence of gastrointestinal symptoms was no different in children with ASDs compared with children without ASDs (9%) at the time of their initial ASD diagnosis.

The panel suggested that multicenter prospective studies are needed using validated instruments and accepted outcome measures in people diagnosed with ASD using established and accepted methods and using appropriate control groups. It’s hard not to agree that more research isn’t needed in this particular area, but it’s important to make sure that the research is highly rigorous and not of the quality performed by someone like, say, Wakefield. There indeed may be something to the contention that autistic children with gut issues may not be able to communicate their distress and instead act out or increase repetitive behaviors.

Oddly enough, Generation Rescue through its anti-vaccine crank blog Age of Autism promoted surprisingly benign characterizations of the new consensus statement by groups normally associated with anti-vaccine quackery, such as the Autism Research Institute (home of DAN! quackery) and the National Autism Association. Of course, these commentaries were clearly self-serving in that they all utterly ignored the report’s dismissal of Andrew Wakefield’s findings, strongly downplayed the statements not recommending the use of gluten-free casein-free diets, given that such diets are the mainstays of DAN! doctors. On the other hand, it’s not too hard to see why they would like the recognition that autistic children can have bowel problems, and that autistic children with bowel symptoms should be treated and researched. Clearly these statements appealed to these groups, for obvious reasons. Of course, it’s highly ironic that these groups would be so pleased. As Kev said, TACA and other autism groups probably could have had a report like this several years ago if they hadn’t been so vociferously promoting Andrew Wakefield’s quackery for so long. Andrew Wakefield did autistic children a grave disservice by tainting the whole field of research into bowel issues in autistic children with the stench of his bad science, conflicts of interest, and even possible scientific fraud.

Not surprisingly, not everyone in the autism biomed movement is down with the new recommendations. Indeed, Jenny McCarthy, ever the dimmest of dim bulbs in the anti-vaccine movement and always willing to shoot off her mouth to reveal her ignorance, doesn’t like these at all. For some reason, ABC News thought it would be a good idea to interview her about the consensus statement, which strikes me as being about as useful as interviewing Deepak Chopra about quantum physics, only without the entertainment value. In any case, basically, she spewed the same old anecdote, most likely full of confirmation bias, just like the one I linked to above, saying:

We’re the ones seeing the real results, and until doctors start listening to our anectodal evidence, which is “this is working,” it’s going to take so many more years for these kids to get better.

I love it when Jenny says, “Until they [scientists and doctors] listen to our anecdotal evidence…” Jenny’s apparently too self-absorbed and dim to realize that scientists and doctors have listened to her anecdotal evidence and that of parents. That’s the reason they’ve bothered to do controlled studies to determine if there is anything to these anecdotes. It’s one reason why a consensus conference was put together to come up with an expert consensus on these issues. That’s one reason why they looked at the available science behind the issue. That’s why they went to all the work to write that consensus statement.

The stupid, truly it burns, and ABC News should be ashamed of itself for interviewing a crank like Jenny McCarthy about actual science.

From my perspective, it’s a very good thing that these consensus reports were released. The reason is simple. Besides providing evidence-based guidelines for treating bowel issues in autistic children, these reports begin the process of taking back these issues from quacks like DAN! doctors and Andrew Wakefield and bringing them back into the realm of science- and evidence-based medicine.

It’s about time.

REFERENCES:

  1. Buie, T., Campbell, D., Fuchs, G., Furuta, G., Levy, J., VandeWater, J., Whitaker, A., Atkins, D., Bauman, M., Beaudet, A., Carr, E., Gershon, M., Hyman, S., Jirapinyo, P., Jyonouchi, H., Kooros, K., Kushak, R., Levitt, P., Levy, S., Lewis, J., Murray, K., Natowicz, M., Sabra, A., Wershil, B., Weston, S., Zeltzer, L., & Winter, H. (2010). Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report PEDIATRICS, 125 (Supplement) DOI: 10.1542/peds.2009-1878C
  2. Buie, T., Fuchs, G., Furuta, G., Kooros, K., Levy, J., Lewis, J., Wershil, B., & Winter, H. (2010). Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs PEDIATRICS, 125 (Supplement) DOI: 10.1542/peds.2009-1878D

Comments

  1. #1 Michelle Dawson
    January 6, 2010

    Because of its timing, the “consensus report” does not take into account several recent studies (published or epublished in 2009), including population-based studies, which failed to find any association between autism and gastrointestinal problems (Sandhu et al., 2009; Ibrahim et al., 2009; Mouridsen et al., in press).

  2. #2 Tim
    January 6, 2010

    What I don’t get is that conversations about this usually don’t look at this from the simple question of how a child – autistic or not – reacts to their diet in general. I have seen autistic kids function better in daily life with dietary changes, but I’ve also seen plenty of neurotypical kids do the same. Perhaps any changes are more pronounced in autistic kids, or it’s that we focus so much on our kids’ behavior vs. other parents that we notice every minute change and see them as significant. I don’t know.

    Many kids have food sensitivities or allergies. If you eat something that your body doesn’t react well to, then it’s reasonable to assume your behavior might be different. One kid in my son’s class was more able to focus and participate in class on the GFCF diet. By anyone’s best guess, he has food sensitivities that impact his behavior that this diet seems to have helped address. He almost assuredly isn’t ‘less autistic’, but he does seem more able to successfully navigate through his day. If we could separate the diet conversation from the ‘more autistic’ or ‘less autistic’ stuff, maybe we’d discover something useful.

    I’d personally like to see a series of studies on dietary changes in all children and the impact on things like cognitive test scores, behavioral changes, etc. My guess is that some children – autistic or not – would find some benefits through changes in diet but that it wouldn’t be any more frequent in autistic children than anyone else. But that’s at best an barely-informed hypothesis.

  3. #3 Martin Matthews
    January 6, 2010

    The advice of these “experts” and “consensus report” will harm children.

    Autism Diets are the most scientifically sound “intervention” for autism.

    Anyone who disparages dietary intervention for ANY human being with less than optimal physiological functioning (and visible related symptoms) is likely struggling with their own cognitive dissonance – i.e. a severe disconnect (denial) between what they KNOW to be right and their own behavior (note: their behavior is directed by a tainted perspective of human functioning – that would have you ignore the undeniable connection between what one eats and how the body works).

    These “expert” denials are political, not scientific.

    Autism Diets are about adjusting food intake – going from not paying attention to it, to be strategic and calculated. They are food focused strategies aimed at serving the body’s natural functioning and aiding its inherent health and healing systems. As with any health-focused action, it aims to help restore physiological functioning.

    The scientific and pragmatic rationale for this action is unquestionable – given that most children with autism exhibit less than optimal health.

    In what world does improving the quality of inputs into a system not somehow positively affect the functioning of that system?

    An Autism Diet should be a doctor’s FIRST recommendation. Hippocrates, the father of modern medicine and inspiration for the “Hippocratic Oath” advised all physicians to first “let food by thy medicine.” This oath directs doctors to “do no harm.”

    Indeed, headlines such as “Doctor rejects Autism Diets…” and the “advice” of said “expert panel” damages children by interfering with the deepest human instinct. To not consider the quality of food intake is counter to the inherent force of nature – to grow, or when injured, to heal and recover.

    It is scientifically impossible to DISprove that going from NOT paying attention to food intake (Standard American Diet) TO paying attention (i.e. applying an autism diet with calculated additions and omissions to food choices) is not ALWAYS going to be beneficial in some way.

    Don’t be fooled by people’s political argument about double blind placebo controlled studies. That is NOT the point. Julie Matthews award-winning book, “Nourishing Hope for Autism” is the most comprehensive guide to understanding nutritional intervention for autism – it explains why it makes sense and how to begin. Diets are calculated food focused strategies – it’s not about “does this or that diet “‘work?’” it’s about does going from doing nothing (SAD Diet) to something (Autism Diet) make sense?

    Gastrointestinal issues are only one of many reasons for Autism Diets, there are many others (nutrient deficiencies, food allergies, etc.), and many dietary approaches known to be helpful.

    I implore anyone to demonstrate that nutrition and dietary intervention does not make sense – for children with autism, or ANYONE with less than optimal physical function.

    The articles found on the following page should help anyone become sensible quickly, they lay out the WHY and HOW of Autism Diets. See them here http://www.nourishinghope.com/page.php?f=r

    The fact that this attack on Autism Diets is occurring is a testament to the rapidly expanding collaboration between parents and leading edge physicians. They look at all data and apply safe and pragmatic strategies that are helping children heal – this is an indisputable fact.

    As more families follow Autism Diets, more children see improvement in their health and behavior. Don’t let fraudulent headlines override your common sense. Autism Diets help – when followed properly, they can’t not. Perhaps that is why 20% (and increasing daily) of children with autism follow a special healing diet.

    Martin Matthews
    Nourishing Hope

  4. #4 Todd W.
    January 6, 2010

    @Martin Matthews

    Your post makes a lot of assertions, yet you do not provide any evidence to back up those assertions. The only link you included has a surprising lack of scientific studies that support your assertions. Please provide some evidence that what you contend is correct.

  5. #5 Jen in TX
    January 6, 2010

    “From my perspective, it’s a very good thing that these consensus reports were released. The reason is simple. Besides providing evidence-based guidelines for treating bowel issues in autistic children, these reports begin the process of taking back these issues from quacks like DAN! doctors and Andrew Wakefield and bringing them back into the realm of science- and evidence-based medicine.

    It’s about time.”

    Agreed. This is a HUGE WIN for children with autism. I’m thrilled.

  6. #6 Orac
    January 6, 2010

    Because of its timing, the “consensus report” does not take into account several recent studies (published or epublished in 2009), including population-based studies, which failed to find any association between autism and gastrointestinal problems (Sandhu et al., 2009; Ibrahim et al., 2009; Mouridsen et al., in press).

    Indeed. I forgot to mention these. (It was late; I was tired; I had planned on looking them up but lost steam.) The meeting to develop the consensus report occurred in 2008. I’m not sure why it took a year and a half for the results to see print, but it did.

  7. #7 Scientizzle
    January 6, 2010

    It is scientifically impossible to DISprove that going from NOT paying attention to food intake (Standard American Diet) TO paying attention (i.e. applying an autism diet with calculated additions and omissions to food choices) is not ALWAYS going to be beneficial in some way.

    Please rewrite this practically un-parseable statement into actual English…avoid using strings of double- or triple-negatives.

  8. #8 Mary Parsons
    January 6, 2010

    Black Triangle had a useful overview of Autism and the gluten-free, casein-free diet that discusses some of the origins of the ‘gut issues as interpreted by Wakefield’.

  9. #9 T. Bruce McNeely
    January 6, 2010

    Martin Matthews:

    “It is scientifically impossible”…to know WTF you mean by that sentence.

  10. #10 arghella
    January 6, 2010

    Mr. Matthews, you do not provide a single shred of scientific evidence for your claims. Of course diet is important, but for you to claim that 20 percent of autistic kids are on a special diet and that the number is going up every day, without any supporting evidence, indicates that you’re deifying your hopes. And, one might presume, making money therefrom, just like it says in the Nourishing Hopes website, which praises your entrepreneurial spirit. Did you write your own copy?

    If you’re making money off expounding your point of view, it hardly matters if you believe it or not, although it matters to the quality of the debate if you are knowingly lying.

    The science at least has the advantage of being correctable in a peer reviewed forum. Are there problems with peer reviewed science? Absofreakinglutely, I could go on at great length…. But if you’re wrong, you are not likely to ever admit it. Calling the report a political rather than scientific document doesn’t make the science better, but it sure makes you look glorious to your constituency. If the researchers are wrong, it will come out eventually. If you’re wrong, and you learn you are wrong, but you are profiting socially and financially from being wrong, what will make you publicly retract your views? Your conscience? You probably can’t see my difficulty in taking you seriously, but others reading this will find my logic rather compelling.

    If I wanted to make a metric crapstack of money, maybe I should anoint myself an autism expert and start making up oddball crank pseudoscience that will make parents feel better without actually doing anything for the kids. Unfortunately for my bank balance, I can’t bring myself to delude myself to that extent.

    In the meantime my contribution to the autism debate is:

    Get your kids vaccinated. We don’t know why the rate of autism appears to be going up, but it is more likely to be genetics than vaccinations. Unvaccinated kids are hazardous to the health of society as a whole, and the parents who have access and don’t get their kids vaccinated for common childhood illnesses are irresponsible and superstitious and I’d like to see every last one of them publicly rebuked.

    Get ASD kids into behaviour modification programs as young as humanly possible.

    To the extent humanly possible, do not drug ASD kids with modern pharmaceuticals. The long term safety and efficacy of antipsychotics and SSRIs in children is not demonstrated, and I publicly denounce docs who give offlabel drugs to small children.

    Take breaks from the herculean amount of work involved with raising ASD kids as much as you can so you don’t wig out.

    Go ahead and experiment with diet to the extent you can; substitution diets can help identify problem foods and I’ve seen with my own eyes how dietary changes can make huge differences in sleep, which is also important for behaviour. Not for my kid, for other sufferers.

    Deal with your guilt. Much of the ASD debate is driven by guilt haunted parents, and guilt does not make for rational decision making.

  11. #11 Jojo
    January 6, 2010

    @Martin Matthews

    Autism Diets are about adjusting food intake – going from not paying attention to it, to be strategic and calculated.

    So, you say that Autism Diets are strategic and calculated. On what? On research demonstrating that certain foods have certain effects on physiological functioning? If so, please provide references. I don’t doubt that some diet choices are better for our overall health than others, but you are suggesting that specific foods lead to specific behaviors. You state that the standard American diet…whatever that may be…leads to these behaviors and that the Autism Diet does not. However, you have not even defined what the standard American diet is, let alone demonstrate that it leads to the exacerbation of Autistic symptoms.

    Additionally, you suggest that the Autism Diet is superior to the Standard American diet and therefore how can it hurt to switch. However, foods containing gluten and casein also contain essential nutrients and their elimination in a diet can lead to nutritional deficiencies such as calcium and folic acid.

  12. #12 MikeMa
    January 6, 2010

    If Mr Matthews could reference any science to support his claim he would have already done so.

    He must therefore believe that the plural of anecdote is data.

  13. #13 mad the swine
    January 6, 2010

    “It is scientifically impossible to DISprove that going from NOT paying attention to food intake (Standard American Diet) TO paying attention (i.e. applying an autism diet with calculated additions and omissions to food choices) is not ALWAYS going to be beneficial in some way.”

    Okay, untangling those triple negatives: a special food diet always helps, and it’s impossible to prove otherwise?

    Ummm… no. Let me quote:

    In the first version of this review we argued that exclusion diets are not without cost in terms of inconvenience and extra financial cost and limitations on foods of choice for the affected family member[.]

    Beyond that, there’s a risk of nutritional deficiencies, etc, if the magic cursed foods you remove from your unique snowflake’s diet aren’t compensated for in some way. But, even assuming that that is the case: diet does not cause or cure autism. Special “Autism Diets”, therefore, are always a negative; they take up parental time and effort that could be better used elsewhere.

    “I implore anyone to demonstrate that nutrition and dietary intervention does not make sense – for children with autism, or ANYONE with less than optimal physical function.”

    Define ‘dietary intervention’. Eating healthy? Sure, everyone should do that, including people with ‘optimal physical function’. Curing diseases with magic diets? Yeah, um, no.

    “Diets are calculated food focused strategies – it’s not about “does this or that diet “‘work?’” it’s about does going from doing nothing (SAD Diet) to something (Autism Diet) make sense?”

    Ah, the typical ‘doing something is always better than doing nothing’ fallacy, used most often by people who don’t understand the concept of opportunity costs. It’s like responding to an underwear bomber by requiring that airplane passengers stay in their seats for the last hour of every flight: sure, if you obsess over your kid’s diet, you’re doing *something*, but that something does not actually help, and the effort and inconvenience put in for no benefit makes it, in fact, worse than doing nothing.

    (Which is not to say that food allergies don’t exist, or that autistic children may have more trouble than normal children in expressing the resulting discomfort. But normal kids – not to mention adults! – often have trouble specifying what food they’re allergic to, and allergies and autism have nothing to do with one another.)

  14. #14 Becca Stareyes
    January 6, 2010

    Martin Matthews, if I’m parsing you correctly, your definition of an Autism Diet is any diet in which food intake is monitored and adjusted for a person with ASD, and that it always has some benefit. So, by your definitions things like my little brother’s ‘health kick’* and his refusal to eat ‘sauce’**, or my own dislike of mayonnaise and sporadic low-fat diet. In both cases those are either:

    1. General ‘watch what you eat’ diets to avoid weight gain.
    2. Personal preferences in ‘picky eating’ — I don’t like the texture of mayo.

    Heck, both of them exist in my (neurotypical) sister, who won’t eat eggs except in baked goods*** and is a vegetarian.

    I’m going to assume you mean something other than ‘good eating habits’ and ‘avoidance of bad-tasting/smelling/textured food or food that breaks The Rules****’. The first one is a good idea for anyone, and the second is just a matter of making someone comfortable, which should improve their mood. So, both of those have benefit, but the benefit isn’t helping with the autism, and are things doctors generally recommend anyway — they aren’t ‘special diets’.


    * Around age 15, he decided to eat healthier, and cut down on fried food and switch to diet soda.
    ** Selectively. Pizza with tomato sauce is okay, pasta with tomato sauce is not. Pasta with butter is okay, potatoes with butter are not.
    *** And was the pickiest of the three of us growing up.
    **** With the understanding that we ASD folk can have some odd preferences.

  15. #15 mad the swine
    January 6, 2010

    Also, just in passing: the USE of capital LETTERS for certain words in one’s text tends to put people off. Imagine you were talking with someone who spoke in a normal conversational tone, except for occasionally SHOUTING certain WORDS; how rational would you FEEL that person to be?

  16. #16 BA
    January 6, 2010

    I’ve worked specifically with children with pediatric feeding disorders since 1992 and primarily with children with ASDs since 1996, I can firmly state that Martin Matthews is full of horse pucky. Children w/ ASDs are prone to selective eating and constipation (secondary to delayed toilet training; see Ibrahim et al., 2009 for some empirical evidence to support my “anecdotal” evidence; I’ve published on the topic as well but would rather not refer to it in this forum). Children w/ ASDs, however, are not more likely than the general population (with feeding issues or not) to have GI difficulties (other than constipation secondary to delayed toileting). I have yet to find a dietary approach that produces any lessening of symptoms of autism though I have placed numerous children w/ and w/out ASDs on allergen-free diets. For children with food allergies, they are usually sickly and tend to be underweight and delayed in growth. However, once the allergen(s) are removed sysmetically from their diet, those things tend to resolve but there is no lessening of symptoms of autism for those children with both autism and food allergy. Yes there may be less problem behavior but the skill deficits they had before are still present. Focused instruction to build skills that the child has difficulties with is the only sound intervention.

  17. #17 Chris
    January 6, 2010

    Martin Matthews was posting an advertisement (for a book, website, and DVD). He is a spammer.

  18. #18 Tom
    January 6, 2010

    Martin Matthews, I assume Julie Matthews is your wife. Julie Matthews proudly claims the Certified Nutritional Consultant (CNC). Ben Goldacre’s cat is also CNC certified.

  19. #19 Chris
    January 6, 2010

    Oh, I just noticed this, the company Matthews is spamming also offers Skype phone consultations (no pricing listed).

  20. #20 Vicki
    January 6, 2010

    There’s also the Hawthorne effect: tell people that a change will improve things, and it’s likely to do so, at least a bit. This is a variation on the placebo effect. The studies that found this did things like add piped music to a factory, telling the workers it would improve productivity, and it did. A few months later, the music was removed, again with the statement that this would improve productivity, and again it worked.

    So, if I believe that not eating strawberries, or adding oat bran to my diet, will improve my mental health, it is likely to do so.

    This is separate from questions such as whether I am allergic to strawberries, or the possible heart benefits of oats.

  21. #21 James Sweet
    January 6, 2010

    @Tim #2 up there: I wonder sometimes if some of the observed anecdotal benefits of these exclusion diets are merely the result of the parents starting to pay much closer attention to what their children consume, i.e. it’s not the restrictions per se, but that the restrictions force the parents to think carefully about their children’s food choices, paradoxically resulting in a more balanced diet (even though the ideal would be for the parents to pay attention with a normal, inclusive diet). If that were the case, then there’s nothing mysterious or mystical about that; we already know that regular meals and a balanced diet have a positive effect on children’s concentration and behavior.

    That’s just wild speculation, though; there is no data to support the above conjecture. It’s just something I wonder about from time to time…

  22. #22 Kristen
    January 6, 2010

    @Martin Matthews

    Seems to me, from following your link, you have a vested interest in touting GFCF diets. The website has ‘information’ but also sells services and books. I bet there is lots of money in that.

    My son and husband (autism and asperger’s respectively) do seem to have some gastrointestinal problems. Whether this is related to ASD, I am unsure.

    My pediatrician has recommended against the GFCF diet, he said in his experience autistic children, who already tend to have strong adversions to the texture of foods are at risk of becoming nutrient deficient unless one is willing to spend a great deal of money on special foods.

    My pediatrician seems to otherwise be very reasonable and he recommended trying to increase my son’s fiber intake. I feel this has helped (even though it seems counter-intuitive because his problem is diarrhea), but I admit, I do not have an objective view on the efficacy of the change (being his mother). It was very easy to implement this diet change, and it can’t hurt him.

    I don’t know how reliable the evidence is for limiting food coloring in his diet. But once again, it is something easy I can do that can’t harm him in the long run.

    I find common sense and reason work best when seeking to find things that help my children. I can’t ignore my BS sense just because he has ASD. It certainly is triggered by people who try to make money off of ‘treatments’.

  23. #23 Denice Walter
    January 6, 2010

    Seriously.Wheat and dairy are bad for kids w/ autism? Many woo-meisters pronounce wheat and dairy bad for *everybody*!Adults,children,with autism or not,with and without GI issues.They are taboo to major leaguers(Adams, Mercola, Null- see websites)and have antecedents in paleo-woo.Here is J.I. Rodale(“The Prevention Method for Better Health”;Rodale books,1960):”I am definitely against any wheat or rye product for human consumption…. fattening…one of the most common causes of colds…tooth cavities…conjunctivitis…asthma…gastric irritation…migraine…hives…eczema… heart attacks…”.”Dairy food has been found to be a factor in making children grow too tall.There is medical evidence that very tall people are not as healthy as shorter ones.They have more high blood pressure,back and foot troubles, and don’t live as long”.Milk causes “arthritis… heart attacks…cavities…” ad infinitum.To *some*, pizza is regarded with the same derision usually reserved for street drugs.

  24. #24 James Sweet
    January 6, 2010

    Additionally, you suggest that the Autism Diet is superior to the Standard American diet and therefore how can it hurt to switch. However, foods containing gluten and casein also contain essential nutrients and their elimination in a diet can lead to nutritional deficiencies such as calcium and folic acid.

    It’s quite possible that both of these statements are true. (I’m not saying they are, I am just saying they aren’t inherently contradictory) It is quite possible that a strictly-followed bogus autism diet is nutritionally superior to the average American diet, while both are inferior to an actual science-based balanced diet.

    Hmmm, I think this could actually be researched… You could do something sort of like the acupuncture studies, i.e. tell one group of parents, “Do whatever you like,” tell another to do a quack-prescribed “autism diet”, and tell the third group to do a “sham autism diet”, e.g. eliminate all root vegetables or something silly like that.

  25. #25 passionlessdrone
    January 6, 2010

    Hello friends –

    This paper is a big, big victory for kids with autism. The greatest irony, however is that some people seem so captivated by the dismissal of autistic enterocolitis that they are missing the bigger point; this type of paper is exactly what parents of the biomedical community wished our pediatrician’s had in their office a few years ago when their child was diagnosed.

    This post in particular is a case of highly targeted editing by Orac; something which ought to make an actual skeptic ashamed. Of course, he is merely following in the footsteps of most of the media coverage; but that is no excuse for someone who (supposedly) prides himself on cutting through the spin, as opposed to weaving it.

    By way of example, regarding dietary interventions, the language is actually what a lot of DAN doctors have been telling people all along:

    Given the real hardships associated with implementation of a strict GFCF diet, additional studies are needed to assess risk factors and possible markers that identify individuals who might benefit from these diets. The panel emphasized that parents and care providers should agree on objective measures, which ideally are to be evaluated by blinded observers, to assess the intervention effect as well as a reasonable time frame before embarking on restrictive or unusual diets. The current literature does not permit a recommendation as to the length of a trial of dietary intervention. In the absence of data, any trial will need to be long enough to ensure that variability in behavior is not responsible for the perceived diet response.

    This is nothing less a full recommendation for additional study, followed by guidelines on the right way to test for individual responsiveness to dietary restriction, and indeed, that the trial must be more than transitory.

    On bullet point 3, exactly one paragraph below he ended his quote Orac seems to have left out this paragraph:

    Most of these studies had 1 or more methodologic limitations, in particular a lack of appropriate (nonrelated) control groups. Despite the limitations in type and quality of available evidence, the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs.

    This paper also does a good job of detailing the problems in interpreting behaviors in children that cannot speak, and speaks towards the importance of looking for gastro problems. I can tell you first hand that this is not something that was happening four years ago when my son was injuring himself all day long; at least not until we saw a DAN.

    The clinical presentation of gastrointestinal disorders in individuals with ASDs may differ from that of individuals with typical development. For example, behavioral alterations can complicate the diagnosis of GERD in persons with compromised communication skills. Expert clinicians have observed that aggressive and self-injurious behavior may be the primary clinical manifestations of GERD in individuals with ASDs, but these symptoms are frequently attributed to nonmedical causes.

    Educational programs designed to increase awareness of medical conditions that can go unrecognized because of atypical symptom presentation should be a priority at meetings of professional societies such as the American Academy of Pediatrics, American Academy of Family Physicians, and National Association of Pediatric Nurse Practitioners.

    What this really tells us is that these societies don’t have this understanding yet. This is the lifeblood of the DAN movement, the relative lack of understanding in mainstream medicine and the assignment of behaviors to psychiatric, as opposedto medical problems.

    Because allergic diseases are common and individuals with ASDs may have atypical presentations or difficulty verbalizing complaints, it is important for caregivers to be vigilant in monitoring symptoms and looking for signs of allergic disease. If the presence of allergic disease is suggested by the history or physical examination, patients with ASDs should undergo appropriate allergy testing (eg, skin testing, measurement of allergen-specific IgE levels, elimination diets, food challenges) and gastrointestinal evaluation (including laboratory testing and endoscopy, if indicated), as would be done for patients without ASDs.

  26. Determine prevalence of gastrointestinal disorders in individuals with ASDs
  27. Develop screen for gastrointestinal disorders in individuals with ASDs that can be used by primary care and other providers
  28. Identify behaviors associated with gastrointestinal pain/distress in persons with ASDs
  29. Evaluate whether dietary restriction is efficacious for individuals with ASDs
  30. Identify role of abnormal gastrointestinal permeability in neuropsychiatric manifestations of ASDs
  31. Determine relationship of immune dysfunction to clinical symptoms that present in patients with ASDs
  32. Determine if alteration in gut microflora is associated with either gastrointestinal or neurobehavioral symptoms in patients with ASDs
  33. Clarify underlying pathophysiology and clinical aspects of ASDs
  34. Characterize genotype of individuals with ASDs and gastrointestinal disorders
  35. Identify genetic mutations that may be possible underlying causes of ASDs
  36. http://pediatrics.aappublications.org/cgi/content-nw/full/125/Supplement_1/S1/T7

    The vast majority of people doing biomed could care less about Wakefield or Jenny McCarthy, and the day that our pediatricians begin to take our concerns seriously is one we have been waiting for a long time. It has arrived. This is a wonderful day for kids with autism.

    - pD

  • #26 Jojo
    January 6, 2010

    @passionlessdrone

    I don’t see how you read Orac’s post to be claiming this was a slam dunk on gastrointestinal issues and ASD considering that

    The panel suggested that multicenter prospective studies are needed using validated instruments and accepted outcome measures in people diagnosed with ASD using established and accepted methods and using appropriate control groups. It’s hard not to agree that more research isn’t needed in this particular area, but it’s important to make sure that the research is highly rigorous and not of the quality performed by someone like, say, Wakefield. There indeed may be something to the contention that autistic children with gut issues may not be able to communicate their distress and instead act out or increase repetitive behaviors.

    is saying the essentially the same thing you are.

  • #27 MadScientist
    January 6, 2010

    Gee, it didn’t take long for the unscientific cranks to turn up. The diet peddlers at the very least need to:

    1. tell the world how this claimed improvement in ASD children is measured – “I swear he’s a different kid” scores 0 points. If you can’t measure it, you’re deceiving yourself (and others).

    2. where an improvement is in fact measurable, at least provide evidence that the improvement due to diet is not connected to known dietary problems in the general population.

  • #28 BA
    January 6, 2010

    @pD

    There are already large scale clinical trials ongoing. In fact, one at the University of Rochester is having a hard time finishing because they can’t keep kids on the diet or once on the diet they stop eating or eat so little they lose significant weight and are dropped from the study. One kid turned gray on the diet. This approach is a dead end. Diets free of allergens are for people with true allergies.

  • #29 David N. Brown
    January 6, 2010

    I think any connection between GI problems and autism have a simple explanation: An autistic having these issues will display more extreme symptoms as a result of stress. On the effects of stress, I have used as an analogy old studies which concluded a Tasmanian devil was vicious based on its reactions to being poked with a stick.

  • #30 Jen in TX
    January 6, 2010

    “The vast majority of people doing biomed could care less about Wakefield or Jenny McCarthy, and the day that our pediatricians begin to take our concerns seriously is one we have been waiting for a long time.”

    pD, it is precisely because of people like Wakefield and McCarthy that our concerns haven’t been taken seriously and why we have had to wait so long for this. The whole vaccine issue has stolen time and money away from research that could have been helping our kids years ago, and for that, parents of autistic children should be FURIOUS.

  • #31 M.
    January 6, 2010

    Orac, you missed a very important interpretation.

    The whole story of autistic digestive problems is almost certainly a great example of the logical error of the wrong direction (i.e. “my flu is caused by my fever” type of thinking).

    Here’s why: one of the most ignored areas of neuroscience is the neuroscience of the gut. In fact, human abdomen contains what is in essence an entire separate brain, only tenuously connected to the actual CNS. This system manages peristaltic movements, the gut immune system, and a bunch of other things we are only starting to learn about.

    The neural system of the gut is highly complex, and requires learning and adaptation, albeit many details are likely to be different (serotonin is a major ionotropic transmitter in this system, for example).

    Now, we have mounting evidence that autism is a complex disease that has something to do with improper synapse formation and/or maturation. If this is true, the disease is systemic, and will affect the gut neural system as much as the brain.

    In other words, the underlying cause of neurological problems in autism will also cause neurological problems in the gut, resulting in various puzzling gastrointestinal problems. It is pretty much guaranteed.

    Therefore, autistic parents are probably right when they connect autism and the associated gastroenteritis, but they make a mistake thinking that latter causes the former; in fact, both are effects of the same underlying neurological problem…

  • #32 rob
    January 6, 2010

    @Martin Matthews:

    sigh.

    now i gotta go and do some science.

  • #33 Tom
    January 6, 2010

    pD,

    If DAN! docs were actually using using evidence-based algorithms for the diagnosis and treatment of gastro disorders, I’d applaud them. However, malpractice is not preferable to indifference or ignorance.

  • #34 Prometheus
    January 6, 2010

    pD comments:

    “By way of example, regarding dietary interventions, the language is actually what a lot of DAN doctors have been telling people all along…”

    and

    “This is nothing less a full recommendation for additional study, followed by guidelines on the right way to test for individual responsiveness to dietary restriction, and indeed, that the trial must be more than transitory.”

    Oddly enough, that is not what “a lot of DAN doctors” have been telling parents. In fact, the DAN dox have been telling parents that the GFCF diet will work for autism (or, at least, that the parent would be remiss if they didn’t “give it a try”). What the DAN dox haven’t been telling their customers is the truth – that the GFCF diet has no data to support it whatsoever and that the only legitimate trials have shown no effect.

    pD goes on to claim:

    “…the day that our pediatricians begin to take our concerns seriously is one we have been waiting for a long time. It has arrived. This is a wonderful day for kids with autism.”

    This gets to the “meat” of the whole “alternative” autism therapy business – the need of some parents to have their fears and beliefs validated. It has nothing to do with the science – which seems to have gone right over pD’s head – and has everything to do with the need to be told “It’s not your fault.”

    Let me fulfill that need right here and now – autism is not the fault of the parents. It’s not the result of poor parenting and it’s not the result of vaccination or diet. The best data we have today supports the hypothesis that autism is a genetic disorder and that nothing the parents did or didn’t do caused it.

    Clearly, anyone who reads this consensus and feels that the dietary hypotheses of autism have been “vindicated” is not comprehending what they are reading. As Orac summarized above, this consensus says three things:

    [1] There is no data supporting the claim that autistic children are prone to a specific GI problem or GI problems in general.

    [2] There is no data supporting the claim that a GFCF diet – or other exclusion/inclusion diets – have any positive effect on autism.

    [3] The modest amount of blinded, placebo-controlled data currently available suggests that the GFCF diet, at least, has no discernible effect on autism.

    As is customary in consensus statements, the authors recommend further research, but they took the unusual step of spelling out – in detail – what that research should look like. I suspect that this was to emphasize the fact that the only “studies” to find a positive effect from dietary interventions were of extremely poor quality.

    I can understand the desire to “spin” this into a “win” for dietary intervention – after all, who wants to admit that they wasted all that time, effort and money – but that would be like trying to “spin” a dead horse into a Kentucky Derby winner.

    Prometheus

  • #35 BA
    January 6, 2010

    Maybe we should invoke the following: you keep referring to that paper but I do not think it means what you think it means.

  • #36 trrll
    January 6, 2010

    In placebo controlled studies in ASD patients, it is common to see a third or so of the patients in the control group show improvement in autistic symptoms over the course of a few weeks. Given that dietary interventions are so widely used by parents of ASD children, we can confidently predict that there often be coincidental improvement corresponding to a dietary change. So anecdotal accounts are nearly worthless.

    Nevertheless, it is clear that GI problems and food allergies are not uncommon in children. Whether or not incidence is greater in ASD populations, the recognition and amelioration of such problems will inevitably be more difficult in pediatric populations with impaired communication, such as ASD children. So parents and physicians necessarily need to be at heightened alert for such issues.

  • #37 Catherina
    January 6, 2010

    Oh my, and all of this came too late for the final corrections in Dr Bob’s “Autism Book”, due to come out this Spring. (sarcasm off)

  • #38 Joseph
    January 6, 2010

    This is nothing less a full recommendation for additional study, followed by guidelines on the right way to test for individual responsiveness to dietary restriction, and indeed, that the trial must be more than transitory.

    @pD: There’s nothing in there that I or any other skeptic would not have said. I’m not sure how you read what you think you read. The paragraph simply says that before any exclusion diets are implemented, studies that show they work are needed. In other words, don’t go experimenting before you got the evidence.

    Mr. Matthews is right that the quality of food intake matters to anyone, autistic or not. But simply restricting a diet based on something you read on a biomed mailing list does not necessarily amount to improving the quality of food intake. It could easily make it worse.

  • #39 trrll
    January 6, 2010

    Now, we have mounting evidence that autism is a complex disease that has something to do with improper synapse formation and/or maturation. If this is true, the disease is systemic, and will affect the gut neural system as much as the brain.

    Maybe yes, maybe no. Some genes that are implicated in development of the CNS are also expressed in the gut, so it is certainly an appealing hypothesis. But we don’t yet really understand enough about the developmental defect(s) in ASD to know whether it/they will affect the enteric nervous system, and the epidemiological evidence so far provides little support for increased frequency of GI problems in ASD populations. Of course, there is likely not a single gene defect responsible for all autism, so it would not be at all surprising if there are subpopulations of people with ASD who do have associated GI problems, but who are not abundant enough to stand out statistically from those who do not. Perhaps once we are able to segregate ASD populations based on genetic markers, this will emerge.

  • #40 MikeMa
    January 6, 2010

    AoA has a roundly positive spin on the consensus doc. No mention of the lack of connection between diet & autism.

  • #41 Elcos
    January 6, 2010

    Lol, I clicked on the link provided by Mathew and was greeted with a most deep and dark woo mine. Indeed the woo was overflowing and of high enough calibre as to power 100aof skeptical blogs for years. I didn’t look far but it became obvious what kind of expertise was called upon to write the diet articles. I was presented the problem of undermethylation of neurotransmitters which apparently the diet will fix.

  • #42 Calli Arcale
    January 6, 2010

    Sounds like Orac’s got material for the next time he gives us a Friday Dose of Woo. ;-)

  • #43 Omri
    January 6, 2010

    There’s also the simple issue that any time parents start an exclusion diet, they exclude all the things the kid has a known aversion to. And the moment you stop trying to shove unwanted food down an autistic kid’s gullet, life gets more pleasant, and the kid’s progress becomes more noticeable.

    But to restrict foods the kid would otherwise willingly eat? Bad. We’re omnivores. We need variety. What we can eat, we should.

  • #44 RJ
    January 6, 2010

    #31

    http://www.sciencedaily.com/releases/2009/03/090302090222.htm

    It’s not just the function of nerves. It can also be a number of cellular processes that are impaired in different systems/tissues based on genes/regulation of genes/interaction of gene products.

    It’s possible that in a sub-set of those diagnosed with ASD, the problems created by types of genes/regulation/epigenetics results in problems in different tissues.

  • #45 Chris2
    January 6, 2010

    So I have a question, based on all these things…

    The consensus statement said, “The reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% or higher (Table 4). 13,16-25 Prospective descriptive reports from autism clinics have described significant gastrointestinal symptoms in at least 70% of patients,22 data that might reflect a referral bias. In contrast, secondary analysis of a UK database indicated that the prevalence of gastrointestinal symptoms was no different in children with ASDs compared with children without ASDs (9%) at the time of their initial ASD diagnosis.”

    Yet Dr. Shinnar (one of the guys ABC interviewed) said, “There is a higher reported rate of GI (gastrointestinal) problems in children with autistic spectrum disorders compared with normal children and with children with other developmental disabilities,” and, “This has been reported in multiple case control studies.”

    But pD states that the consensus also said, “Despite the limitations in type and quality of available evidence, the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs.”

    Then Prometheus states “There is no data supporting the claim that autistic children are prone to a specific GI problem or GI problems in general.”

    So which is it? Is the research clear that there is a higher incidence of gastrointestinal problems or is it not?

  • #46 Prometheus
    January 6, 2010

    Chris2,

    I think that my statement was the most accurate – “There is no data supporting the claim that autistic children are prone to a specific GI problem or GI problems in general.”

    The fact is that the reported incidence of GI problems in autism is all over the map – from 9% to 70%. The problem is that there has not yet been a good study published that looked at the general population and a wide range of autistic people and compared the two (note: there isn’t even a general agreement on the incidence of GI problems in typical children).

    While “the preponderance of the data” (an oddly legal term in a medical consensus) may suggest a higher incidence, there hasn’t been a truly valid study published yet.

    The higher rates of GI disturbance seen in some of the studies may reflect the nature of the facility doing the study – they may have attracted patients with more complex medical problems and thus see an abnormally high percentage of autistic people with GI problems.

    It is also important to note that GI problems are widely felt to be more prevalent in people with developmental delays or disabilities of any kind, so a more appropriate question might be “Do autistic children have more GI problems than children with Downs Syndrome?”

    Prometheus

  • #47 LAB
    January 6, 2010

    Still awaiting results of NIMH study NCT00090428, Diet and Behavior in Young Children With Autism. The estimated completion date was February 2009.
    http://clinicaltrials.gov/ct2/show/study/NCT00090428?view=results

  • #48 BA
    January 6, 2010

    LAB see 28

  • #49 Pseudonym
    January 6, 2010

    I have to agree with Tim’s first comment.

    My autistic daughter has a few food allergies which seem to make her problems worse. It may be that kids with autism are more prevalent for having food allergies. Or that in kids with autism, some food allergies have the main symptom of making their self-control worse. Or it could be a coincidence, and I shouldn’t make conclusions based on a few examples from my family and one or two others. Either way, it’s definitely a topic that some research would help with.

    And for parents with autism who have concerns: If you don’t have a good paediatrician with expertise in developmental delay/autism, get one. I can say without reservation that my daughter’s paediatrician represents some of the best money I’ve ever spent in my life.

  • #50 LAB
    January 6, 2010

    @48
    One year ago I was told by the principal investigator that the study was complete and they were “actively analyzing the data.”

  • #51 Chris
    January 6, 2010

    Then LAB, see a previous Orac post. :-p

    They are probably also writing, re-writing, reviewing, editing, getting editorial approval… and all that other boring stuff. (my only experience in writing reports was on engineering computer analyses of a structure, which had to go through several drafts, routed for approval by several supervisors, and it was so long ago, there was also convincing the person typing the thing to use the Greek font capability of their new Wang word processing system, so I didn’t have to go in and draw in all the sigmas, etas, thetas, zetas, alphas, betas, gammas and omegas myself!).

  • #52 Chris
    January 6, 2010

    Pseudonym:

    It may be that kids with autism are more prevalent for having food allergies

    Or not. There are plenty of “normal” kids with food allergies. My younger sister is really lactose intolerant (okay, not a real allergy), and even though she was born two months premature in the early 1960s she developed normally (my sister was lactose intolerant from birth, while my daughter became that way as a teenager).

    I have known several people with celiac disease, none of them had autism. Then there was one friend who had both daughters end up with incredible egg and soy allergies, both of the kids were normally developing.

    Okay, those are anecdotes. Sorry. But food allergies are common, and I don’t think having a disability makes one more likely to have a food allergy.

  • #53 LAB
    January 6, 2010

    @51
    So you’re saying I watch too much TV? Ha!

    Here’s the scoop from clinicaltrials.gov:

    “In general, a responsible party is required to submit ‘basic results’ information not later than one year after the ‘primary completion date’ or date that the final subject was examined or received an intervention for the purposes of final collection of data for the primary outcome, whether the clinical trial concluded according to the prespecified protocol or was terminated. (Note that, if submitted by the data provider, the ‘primary completion date’ is listed in the study protocol record.)”

    The “primary completion date” for this study was October 2008.

    I’m not saying this stuff doesn’t take a long time, just that I’m awaiting the results. I was pointed to post #28 saying that this study was ongoing, which conflicts with what I was told by the principal investigator last year. Who knows. They may have gotten an extension and started all over again.

  • #54 Aaron
    January 6, 2010

    Nice, binocular, unstudied view of the situation. You miss several key points here:

    1) The studies don’t say that children over the age of 1 have GI problems. The study in question is a link between infants under the age of one who develop a SPECIFIC type of GI infection that has a high chance of being an early indicator of autism later. You completely ignored this.

    2) Wakefield’s studies established a link for the above. You conveniently ignore this and instead promote more propaganda with no science links to promote your “debunking” of his study.

    Here’s some ACTUAL information with links to ACTUAL scientific studies, not heresay:

    http://www.naturalnews.com/026827_autism_vaccination_vaccines.html

  • #55 Orac
    January 7, 2010

    Did Aaron just cite NaturalNews.com as a source to back up his assertion?

    Ha.

    Haha.

    Hahaha.

    Hahahahahahahahahahahahahahahaha!

    Not only that, he cited the Hewitson monkey study.

    http://scienceblogs.com/insolence/2009/10/some_monkey_business_in_autism_research_1.php

    EPIC FAIL!

  • #56 Corina Becker
    January 7, 2010

    I would just like to applaud Mr. Matthews for giving me a laugh. This fairly-well functioning autistic adult without GI issues would love to see the science that says that a special diet would do anything to change my neurology. Until then, I remain a laughing skeptic.

  • #57 Chris
    January 7, 2010

    LAB:

    So you’re saying I watch too much TV? Ha!

    In a manner of speaking, yes.

  • #58 DLC
    January 7, 2010

    Right . . . Obviously someone who’s never heard of that rule which says :”he who lists naturalnews.com or whale.to as a source automatically loses the argument.”

  • #59 passionlessdrone
    January 7, 2010

    Hi Prometheus –

    I can understand the desire to “spin” this into a “win” for dietary intervention – after all, who wants to admit that they wasted all that time, effort and money – but that would be like trying to “spin” a dead horse into a Kentucky Derby winner.

    I’m not trying to spin anything; I am actually very, very happy because I think this is a step in the right direction. It is based entirely on my experiences with my son, who suffered for a long time, in large part because his normal pediatrician didn’t know anything that is contained in this report. [Not really his fault, as he was pretty much like every pediatrician at the time].

    As I mentioned, my son had eczema over his arms and legs for months before his second birthday, but his pediatrician didn’t recommend any testing. Instead, his only recommendation was lotion. If, instead, I could have pointed to an article in Pediatrics that inidicated IgE, or food allergy based tests were appropriate, and indeed, that autoimmune disorders seemed to be associated with autism, it might not have taken six months for me to clear the issue up on my own. While it is well and good to say that my pediatrician should have done this anyways, the reality is that my situation is not at all unique. [Subsequent IgE tests did indeed reveal gluten, and soy sensitivieis; but only because our DAN recommended we run them.]

    If I ever need validation that I’ve made the correct choices regarding diet with my son it is a relatively simple operation to feed him some wheat and observe the subsequent, rather difficult to misinterpret reactions in the toilet, the re-emergence of eczema on his arms, and wild behavior.

    I am genuinely happy to think that other children might find help sooner as a result of this report.

    - pD

  • #60 passionlessDrone
    January 7, 2010

    Hi JoJo –

    If you take a look at the predominant media coverage of this report, the first, and usually only storyline you will get is: “Report shows diets don’t help autism”.

    By way of example, check out the website for the Autism “Science” Foundation.

    This type of reporting completely misses the spirit of this report; that our understanding is truly nascent, our existing studies are of poor quality, and that we shouldn’t be drawing any conclusions without a lot more research.

    - pD

    - pD

  • #61 passionlessDrone
    January 7, 2010

    Hi trrl –

    Some genes that are implicated in development of the CNS are also expressed in the gut, so it is certainly an appealing hypothesis. But we don’t yet really understand enough about the developmental defect(s) in ASD to know whether it/they will affect the enteric nervous system, and the epidemiological evidence so far provides little support for increased frequency of GI problems in ASD populations.

    What is your take on the MET studies from Cambpell and Levitt? They seemed to have several studies showing increased prevalance of the allele in the autism population, including one with a subset of children reporting gastro problems. The tie to brain formation seems strong, and the authors contend that HGF has been shown to be associated to abnormal gastro function. [Two of the primary authors of this consensus are heavily involved in the MET studies.]

    I am genuinely interested in your opinion.

    - pD

  • #62 Tracy W
    January 7, 2010

    Autism Diets are about adjusting food intake – going from not paying attention to it, to be strategic and calculated.

    So instead of relying on your body’s natural instincts, you favour trying to use conscious attention and calculation? On what basis do you think that conscious attention will do better than your own body?

    (I don’t think that natural is always better than calculated but good nutrition is a very complex topic, and evolution has been working on it for billions of years).

    They are food focused strategies aimed at serving the body’s natural functioning and aiding its inherent health and healing systems. As with any health-focused action, it aims to help restore physiological functioning.

    Aiming at something is not the same as getting it. There have been plenty of bad ideas in medicine.

    The scientific and pragmatic rationale for this action is unquestionable – given that most children with autism exhibit less than optimal health.

    Umm, did you read the post Orac made? If it’s unquestionable, then how do you explain that Orac, and the authors of the paper Orac refers to, questioned it?

    And what does this say about the accuracy of any of your other statements? If you can’t even be bothered to read the post you’re making a comment on, or if you’re incapable of noticing counter-evidence to your claim that the rationale is unquestionable, why should you expect anyone to trust your word on the far less obvious issue of the benefits and costs of strategic and calculated diets?

    In what world does improving the quality of inputs into a system not somehow positively affect the functioning of that system?

    Well, for a start, in a world where the system already has a subtle set up of feedback mechanisms and a variety of resources developed in response to long experience of varying quality of inputs, so as to manage out any variations.
    Another one is where the quality of the inputs before the improvement was already good enough as to make no difference to the functioning of the system. For example, take a hydro-powered station. They generally have grilles on their intake tubes to remove large debris from the water. If you take a hydro-powered station that is already working fine, and put a finer grill in place, you would increase the quality of the water but I would not expect an increase in the functioning of the hydro system. The improvement in quality would take place beyond the threshold that matters.

  • #63 Catherina
    January 7, 2010

    pD – eczema often clears up around the age of two – the best course of action is to take good care of the skin during that time (basic care with good lotion) and wait for the child to grow out of it.

  • #64 Jen in TX
    January 7, 2010

    “But pD states that the consensus also said, “Despite the limitations in type and quality of available evidence, the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs.”

    Then Prometheus states “There is no data supporting the claim that autistic children are prone to a specific GI problem or GI problems in general.”

    Keep in mind that the current studies are not factoring in a large group of non-verbal autistics who don’t have obvious bowel issues, but whose behaviors (so eloquently spelled out in the new consensus) indicate that there may be underlying gut pathology. My own son is a prime example of this.

  • #65 Jen in TX
    January 7, 2010

    “pD – eczema often clears up around the age of two – the best course of action is to take good care of the skin during that time (basic care with good lotion) and wait for the child to grow out of it.”

    Are you serious? Wait for the child to “grow out of it?” Sometimes eczema can be very severe. And PAINFUL. Not to mention the potential for infection. If allergy testing can be done that will reveal potential triggers for it, and removing those triggers takes care of the problem, wouldn’t that be much more sensible than just letting the kid suffer?

    Sheesh.

  • #66 MI Dawn
    January 7, 2010

    @Jen in TX: Do you know if doctors do testing for allergies/give allergy shots to an infant? I have no experience with the issue (the only persons I know who had skin testing done were teens when they developed allergies). It certainly makes sense, if allergies are suspected, to test for them and treat/restrict allergens. I just don’t know if it is routinely done, or if there is a medical rationale for not testing under a certain age.

    And yeah, I would certainly want to do more than just skin care,lotion, and wait it out if my baby had eczema. The risk of infection, not counting the discomfort to the baby, is too important not to treat the underlying cause of true eczema.

  • #67 FluffyRoss
    January 7, 2010

    I believe the use of prescription pills by the mothers, and passed down in the womb, and the continuing overprescription by doctors for “depression” and other assorted complaints, is what has caused this terrible rise in autism.

  • #68 Jen in TX
    January 7, 2010

    “Do you know if doctors do testing for allergies/give allergy shots to an infant? I have no experience with the issue”

    I can’t think of a reason why allergy testing wouldn’t be done on an infant. A RAST is a simple blood draw, (though costly and sometimes not always accurate) but skin testing and allergy shots might possibly pose additional risks. Like you, I have no experience with the issue (wrt infants). Perhaps someone who does would like to weigh in.

  • #69 Chris
    January 7, 2010

    FluffyRoss:

    I believe the use of prescription pills by the mothers, and passed down in the womb, and the continuing overprescription by doctors for “depression” and other assorted complaints, is what has caused this terrible rise in autism.

    Oh, so what you “believe” is more important than the actual data! What evidence do you have that mothers of autistic children are on prescription medication?

    And what terrible rise of autism? That is also debatable.

  • #70 Perky Skeptic
    January 7, 2010

    Another post-hoc logical fallacy that people doing dietary interventions for their children often fall into was exemplified by a woman of my acquaintance who told me, “We put J on a gluten-casein-free diet for two years and she was a lot better by the end of it.”

    Well, of course she was! There is significant developmental improvement over the course of a year or two even with no intervention at all. *sigh*

  • #71 Lyn
    January 7, 2010

    Has anyone else noted an inverse relationship between quoting Hippocrates and having evidence to support your position?

  • #72 nick
    January 7, 2010

    It’s a good thing that articles like these help us focus on science based treatments like ABA, and a new generation of companies like rethink autism http://bit.ly/6s1G3J are making science based treatments like ABA more affordable.

  • #73 trrll
    January 7, 2010

    What is your take on the MET studies from Cambpell and Levitt? They seemed to have several studies showing increased prevalance of the allele in the autism population, including one with a subset of children reporting gastro problems

    This is an area of research that is pretty much in its infancy. I’ve seen many plausible-sounding genetic associations for various diseases fail to hold up, so I tend to take them with a grain of salt. Genetic association, even if real, does not necessarily imply causation, so finding an association is really only a starting point–a way of generating hypotheses.

  • #74 Calli Arcale
    January 7, 2010

    MI Dawn:

    @Jen in TX: Do you know if doctors do testing for allergies/give allergy shots to an infant?

    The practice varies, but allergy tests aren’t as straightforward as many would like you to think. For one thing, they cannot predict allergies before exposure. By definition, you are not allergic to anything to which you have not been exposed. Your immune system has to see it first, sometimes more than once.

    The gold-standard challenge-response test is very reliable (though again, it can’t predict reaction to stuff you’ve never seen before) but very uncomfortable; I would be very reluctant to put an infant through it. I was about 8 when I went through it. Took three nurses to restrain me, I fought so hard. It’s really not any fun at all, and you itch like MAD afterwards.

    I’m not sure how effective the blood tests are. I do know there are scams in this area, so I’d be cautious what servies someone uses. But it’s probably the only objective allergy test you’d want to do with an infant. Anecdotally, my experience is that pediatricians tend to recommend the old-fashioned trial and error method unless something is very seriously wrong. Part of the problem with any allergy test is you can only realistically test for a limited number of things, and humans are exposed to gazillions of possible allergens every day.

    And allergies can be weird. Cruellest one I’ve heard of yet is the rare cases of women who turn out to be allergic to human sperm, and who learn this after their wedding. Second-cruellest would be the one I saw on Animal Planet. This sweet, lovable yellow labrador retriever (IIRC) with a very strong play-with-humans drive turned out to be allergic to practically everything — including humans. Poor guy. They did finally get him a situation that worked out, though. It did involve a lot of Benedryl.

  • #75 mythusmage
    January 7, 2010

    My take? Autism is not caused by upset tummies, upset tummies are caused by Autism.

    Kid gets stressed, stress gets expressed as an upset tummy. Kid is autistic, has exaggerated response to the upset stomach. Parents jump to erroneous conclusion.

    Speaking as an Aspers it is my experience that we tend to overreact to stress. One reaction to stress is GI problems. We react to stress, you mundanes react to our reaction, and you make it worse with all your fretting and fussing. What could be handled through relaxation techniques (or even some time out) becomes a calamity that must be addressed by meaningless therapies and potentially harmful substances. (Has it ever occurred to anybody that the fussbudgets who get all out of shape about things like this have an ASD themselves?)

    Just an observation.

  • #76 Dr. P
    January 7, 2010

    As I mentioned, my son had eczema over his arms and legs for months before his second birthday, but his pediatrician didn’t recommend any testing. Instead, his only recommendation was lotion. If, instead, I could have pointed to an article in Pediatrics that inidicated IgE, or food allergy based tests were appropriate, and indeed, that autoimmune disorders seemed to be associated with autism

    The fact that your son had eczema of onset sfter 6 mos of age and persistent for mos in and of itself is an indication for allergy testing, independent of the autism;soy sensitivity would be more likely in this type of profile;Your DAN doctors got lucky,your son had an atopic diathesis and there’s no good evidence I’m aware of for an increased association between atopy and autism.There’s no reason why autistic children should not be just as likely to have these problems,however, and I’m happy to hear he’s doing well. @ 66,I’m not an allergist, just a general pediatrician,but my impression is that most allergists probably wouldn’t skin test below 6 mos without a convincing indication,I haven’t met a lot of allergists with a lot of confidence in the RAST below 15 mos or so,:I’ve found it occasionally useful when used over that age for specific allergens(cat, dog, specific foods,etc). I do seem to remember hearing something in my past about decreasing accuracy less than 6 mos but don’t quote me on that, I could be hallucinating(long day).

  • #77 red rabbit
    January 7, 2010

    Wow.

    Allergy in medicine has a very different definition to the one folks are using here. Allergy is histamine-mediated, immediate, type I hypersensitivity. A food allergy will manifest within minutes of exposure, and will consist of one or several of: rash (generally hives), swelling of the face, difficulty breathing, and abdominal pain. Untreated, the symptoms crescendo, and if the reaction is mild, subside entirely within 24 hours. Food allergies are not subtle.

    Allergy testing is not reliable in anyone’s hands. A moderately atopic person with a true allergy to, for example, cats, may also skin-test positive to any number of other allergens which are not of actual clinical concern, and the person will not have an allergy attack when exposed naturally.

    Blood testing for allergy is invariably a scam. Blood testing can find celiac disease (gluten intolerance), which is not an allergy. The “diagnostic test” for lactose intolerance is to eat a load of ice cream and see what happens. Lactose intolerance is also not an allergy.

    People talk about food allergies not being detected, which is complete nonsense. If someone has a true food allergy, they will know about it, because within minutes of eating the trigger food, they will be very ill. If it is a “mild” allergy, then it will be mitigated by benadryl, or some other antihistamine.

    Grr to abuse of medical language.

  • #78 Inventor
    January 10, 2010

    Perhaps I could introduce myself. I’m a biomed inventor, seeking start-up financial support. We’re getting very good results with what we call the “two egg regimen”. I hope to patent the methodology.

    We’ve found that, if we place two fried eggs on a child’s head, massage into the hair, allow to dry and then shampoo at per usual, on a weekly basis, after two or three years a very great many will show considerable improvement. Eventually, a good number will lose their ASD diagnosis and lead what we call “normal” lives.

    Are there perhaps any venture capitalists who could help with our development program? Or perhaps parents who wish to purchase optimized eggs and shampoo from our partner company, Wakefield, Geier and Crook?

  • #79 Pablo
    January 10, 2010

    Inventor – you would have more success if you left the eggs raw. See, fried eggs have proteins that are called “denatured,” which means, “not in their natural form.” Using the eggs with proteins in their natural form would be far more effective.

  • #80 han
    January 10, 2010

    Just read a great article lambasting Jenny McCarthy on Discovery News:
    http://news.discovery.com/human/jenny-mccarthy-dismisses-pediatrics-study-on-autism.html

  • #81 Deata
    January 11, 2010

    Having read the article and all the above comments I am not surprised that the prevelence of ASD kids is going up – dramatically. Not one of the comments I have read seems to be concerned with the elimination of ASD – just in slanging off at everyone who doesn’t ascribe to their own way of thinking, or writing.
    It’s about time for everyone to be putting the children first; if there was any one ‘cure’ for ASD one would think it would have come to light by now. So surely ANYTHING that helps a child to live a happier life, whether it just helps them enjoy normal toileting or allows them able to focus a little bit better is worth trying.
    Too many parents that I know who have had a child diagnosed with ASD/Autism have simply been told by their pediatrician that ‘there is no cure, just take them home and love them’ or something similarly ridiculous. When does any loving, caring parent accept there is nothing that can be done? NEVER, even when all hope is lost, we never give up.
    Whilst the medico’s are not able to provide some tangible help many schemes, plans, diets etc., will be tried; And guess what, some of them will work, to some degree and the joy a parent of an autistic child feels when there is one little step in that long road they tread will be immense.
    I for one will rejoice with them, we all should, for until you have been in their heart aching places you should be spending your time finding the one real cure – if there is but one!

  • #82 snerd
    January 11, 2010

    So surely ANYTHING that helps a child to live a happier life, whether it just helps them enjoy normal toileting or allows them able to focus a little bit better is worth trying.

    So how about a full-frontal lobotomy? Deep-sleep therapy? The amputation of all limbs?

    … no? You did say ‘ANYTHING’.

    Hint: You don’t ‘cure’ the fundamental wiring of someone’s brain.

  • #83 Deata
    January 11, 2010

    Exactly you confirmed my comments – …Not one of the comments I have read seems to be concerned with the elimination of ASD – just in slanging off at everyone who doesn’t ascribe to their own way of thinking, or writing….

    So you’re 100% certain all those diagnosed with ASD have ‘fundamental wiring of their brain’ problems?

  • #84 cyberboy
    January 11, 2010

    The anti-vax nutters are always going on about how Wakefields original study regarding Autistic enterocolitis has been replicated in 5 different countries!? Someone please tell me this is utter crap….I’m getting so sick of debating with them and always having to counteract their lies.

  • #85 Kristen
    January 11, 2010

    Too many parents that I know who have had a child diagnosed with ASD/Autism have simply been told by their pediatrician that ‘there is no cure, just take them home and love them’ or something similarly ridiculous. When does any loving, caring parent accept there is nothing that can be done? NEVER, even when all hope is lost, we never give up.

    No, parents with autistic children don’t give up. My son has tried all of the proven therapies. He seems to respond well to OT, ABA, Speech therapy and SI therapy . He is getting better in the areas where he has the most difficulties.

    I don’t mind if other parents want to chose untested treatments for their children, just not the dangerous ones. chelation is dangerous, lupron protocol is barbaric etc.

    Put your child on a diet if it makes you feel better, but don’t risk their health or life in search of a “cure”. That being said, why come here to a blog dedicated to science and try to convince us that these treatments work. If they aren’t proven through well designed studies, than they are not going to be seen as legitimate therapies by scientists.

    As I have said many times here before, I don’t think my son needs to be “cured”. He does need to learn to live in this society, and that is what we are working with him to achieve. I will not ever give up on him, not till the day I die.

  • #86 zL
    February 3, 2010

    My kid cognitively digresses and goes mute in 20 minutes when he eats any form of casein. Removing it saved taxpayers of this country 70 thousand a year for his care. I gift you all this practical insight.

  • #87 Chris
    February 3, 2010

    Oh, wow… and there are several people who have celiac disease and/or lactose intolerance who do not do that!

    The plural of anecdote is anecdotes, not data.

  • #88 Brad
    November 21, 2010

    For anyone who does not agree with the gut/brain connection, please read Dr. Mark Hyman’s book “the Ultramind solution”. Also, take a look at the forward his book written by Dr. Martha Herbert of Harvard as well as looking at Dr. Michael Gershon’s book, “The second brain”.

  • #89 Chris
    November 21, 2010

    Dear Brad “The Necromancer“, please go to the upper left hand side of this page and plug in the word “hyman” in the search box. Take time to read them before commenting again.

    Do the same with “Martha Herbert.” With that search you should find this article, with these to say about Dr. Herbert:

    As Autism Diva and Kevin Leitch pointed out, like Dr. Mark Geier and Dr. Boyd Haley, Dr. Herbert has been slapped down by the courts, which used the Daubert standard to reject her testimony claiming that a child was made autistic by a reaction to mold growing in the condo she was living in.

    Some basic rules before commenting on a blog or forum:

    1) If you find an article through Google, before commenting go to the first page and see what is under discussion.

    2) Get to know the place, lurk for a while.

    3) Become familiar with the writing style, especially in how issues are discussed.

    4) Try to proof read your comments (okay, we don’t all do that).

    5) If you think you want to bring a subject up to the participants’ attention, please use the search box on the upper left side of this page to see if it has been discussed before.

    6) If you get an error when posting a comment, before posting again… open another window to see if it was actually posted.

  • #90 doc
    October 20, 2011

    Autism/ASD are probably multifactorial disorders including but not limited to denetic predisposition. So much remains unknown and is open to debate.
    It is my opinion that gut plays a sentinal role in the pathogenesis in many of the patients. It is like various gut-related studies representing various dots all around with possible link to the disorder. Whether they are connected to the autism and to what degree (association versus coincidence versus causation) may depend upon your “belief”, your ubringing and/or interpretation as well as how a child responds to particular intervention.
    A recent systemetic review concluded that most modern treatments used these days for autism have little scientific evidence to support their use. No wonder patients go for other treatments. The use of other treatments should ALWAYS be undertaken keeping in context of risk versus benefit and ONLY in consultation with physician.

  • #91 Chris
    October 20, 2011

    doc, did you read the comment just before yours that was posted almost a year ago? Why did you not post on a more recent relevant article? Did you think your spamming would go unnoticed?