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Tuesday, May 11, 2010

I don't need studies to prove what I already know

I did not write this, just saw it and copied and pasted.

The results of a 2-year study indicate that use of a gluten- and casein-free diet may help ameliorate some of the symptoms of autism spectrum conditions for some children.

In conjunction with the Center for Autisme in Denmark and the Universities of Oslo and Stavanger in Norway, ESPA Research, a not-for-profit subsidiary of ESPA (Education and Services for People with Autism) along with the University of Sunderland, announce the publication of results for a 2-year research project looking at the effectiveness of a gluten and casein-free diet for children with autism. Group results of the Scandinavian - British (ScanBrit) randomised controlled dietary trial appear in the April 2010 edition of the journal Nutritional Neuroscience.

Autism is a life-long condition present in an estimated 1% of the population. It primarily affects the way a person communicates and deals with their social environment and people around them. Autism is poorly understood with currently no genetic or biological test to aid diagnosis. Whilst no universal intervention strategy has been found to manage the more complicated symptoms of autism, some parents have reported that changes to their child’s diet did, in some cases, reduce some of the symptoms associated with autism.

“For many years parents of children with autism have been experimenting with changes to their child’s diet” said Dr Paul Whiteley, from ESPA Research. “Some have reported a reduction of certain symptoms whilst a gluten and casein-free diet is being followed. In this investigation, we tested experimentally the effectiveness of such a diet using some of the gold-standard assessment instruments currently available in autism research. We found significant group changes to some autistic symptoms whilst participants were on diet compared to no diet in place”.

In the study, 72 children with autism were randomly allocated to a diet or no-diet group. Following a battery of baseline tests and measurements, children allocated to the diet group followed the intervention with support from a study nutritionist. Whereas traditional studies of this type normally just compare intervention against non-intervention, the ScanBrit study also used an adaptive design setting specific targets of improvement to be met by children on diet in order to indicate any success of the intervention.

“Our results suggest that some children with autism may benefit from this type of intervention” Whiteley said. He cautions however that “dietary changes did not work for everyone and demonstrates the clear need for dietetic and medical support if such a restrictive regime is to be attempted”. The next stage of the research will try and predict those best- and non-responders to the diet on the basis of behavioural patterns and the analysis of urine samples taken over the course of intervention.

Urinary analysis will be conducted on a state-of-the- art Q-TOF Mass Spectrometer recently acquired by ESPA Research.

*Gluten-Free, Casein-Free Diet Not Effective? – A News Analysis:*

(Another interesting follow-up to a recent discussion on our board-)

By Todd Gary

One of my pet peeves is bad information, especially in the form of bad or even irresponsible news reporting. In a day and age when massive proliferation of information is so easy, it becomes ever more important to be critical “consumers” of information. The May 4, 2010, article (blurbed and linked in SAR of May 5, 2010),( http://www.consumer news04/2010/ 05/gluten_ autism.html ) touting that the “Gluten-Autism Link Doesn’t Hold Up,” is a perfect example, and well worth unpacking in a day and age when few people read past the headlines. Setting aside the headline, the open paragraph of the article stakes the claim: “A gluten-free, casein-free diet is not an effective treatment for autism spectrum disorder (ASD), according to a review of more than a dozen major studies investigating the approach.” Note that the author is not merely saying the GF/CF diet is of uncertain benefit, or that there aren’t studies establishing benefit or lack of benefit. No, this writer makes a definite and affirmative claim: the diet is “not an effective treatment.” Ok, so we should expect valid scientific data or evidence establishing lack of efficacy. As with any critical analysis of information, we start with the source. Who is reporting this? Is it a reputable source? Are its reporters held to ethical reporting standards? Are there axes to grind? Following the SAR link we find – wait, it’s not the NY Times, or the LA Times – it’s… Consumer Reports?? Hmm, we aren’t talking about the latest model Pria or toaster ovens – we’re talking about autism treatment. Perhaps a bit far afield from their usual expertise, but let’s give this usually reputable source (of electronics reviews) some benefit of doubt. But wait – there’s another glaring concern: Where’s the author? Scroll up, scroll down – no by-line anywhere at all. Now that’s a bad sign! It means no accountability at all. For all we know, it could have been written by the laundry detergent correspondent’s eighth grade daughter for a class homework assignment. So much for the source of the article; what about the source of the content? The second paragraph introduces the Venerable Authority, quoted extensively throughout the article, and the source of the “study” at issue: “Austin Mulloy, a doctoral student in the Department of Special Education at the University of Texas at Austin.” Wait – it’s not a doctor? Merely a doctoral student? But let’s look even closer. Despite the implication, “doctoral student” does not mean “medical student”: Mr. Mulloy is in the “Special Education” department at the University of Texas. He’s a grad student studying special education. There’s no medical background apparent here whatsoever -- in either the news source, the author of the article, or the author of the study! That’s mighty odd when the subject is the treatment of autism! On to the content… The study was performed by Mr. Mulloy and “a team of scientists from the Meadows Center Autism Spectrum Disorders Institute.” (What kind of scientists? Not reported. What is the Meadows Center? Not reported.) And here is a key fact in the third paragraph: this was not primary research, but a review of “15 published, major scientific studies” performed by others. So what did they find? Did these “15 published, major scientific studies” disprove any benefit from the diet, as promised? Ah – not so fast! Paragraphs 4, 5 and 6 are all background on the diet. Not until paragraph 7 do we find the meat in this cocoanut: “The research team reported that a number of gross methodological flaws invalidate studies that show support for using the diet as an ASD treatment. "So, the claim staked by the article in its opening paragraph is proved false. We did not find a single primary, peer-reviewed study disproving benefit of the diet. Rather, we find a group of folks throwing barbs at “15 published major scientific studies” performed by others, that actually showed benefit. But perhaps describing this review accurately just wouldn’t be as “good” news. So, in the interests of making “good news” we created “bad information." The rest of the article is almost anti-climactic, once its false premise and methods are revealed. Paragraph 8 tells us that a number of documented phenomena other than diet “can explain” the outcomes of the 15 studies. Not “do explain” – just “can explain.” Hardly overwhelming disproof of benefit. (The article doesn't even bother to mention what these other "documented phenomena" are.) Paragraph 9 is beaut, though, and typical of the “scare the parents” methodology of the mainstream media establishment. Here the author sub-headlines a special paragraph: “Caution on Diet Changes.” Why should we have such caution? Well, because our graduate student Mr. Mulloy urges so.Because he says that “a variety of adverse consequences are known to be associated with a gluten- and casein-free diet….” Really? Wow! Wish I knew what those are. Go figure! Our son has been on it for years, we’ve been reading about it for years, we’re well-educated on autism spectrum disorders and their treatments, and all this time we must simply have missed hearing about all (or even any!) of these “adverse consequences” that are “known” to be associated with the diet. But this brings up a great forensic tool for unpacking bad reporting: the passive voice detector. Passive voice hides identity, which is very useful if you want to hide motive or a lack of information. Mr. Mulloy states that this “variety of adverse consequences are known.” Known? What does that mean? Known by whom? Does Mr. Mulloy mean to say these adverse consequences are reported and documented? If so, why doesn’t he say so? If he said that, of course, we might want to know what the consequences are, who researched and reported them. And if that information doesn’t exist, or is simply inconvenient, it is much simpler to resort to the passive voice. Anytime you hear the passive voice (“It has been reported that…” for example) let your “bad information” alerts sound off. The final three paragraphs of the article are more fluff -- background on ASD, all irrelevant, except a final note of falsity that flavors the whole meal in reverse (if you catch my drift): “While the exact cause of autism remains elusive, some possibilities have been ruled out, including some routine childhood vaccines.” With this mindless nod to the reporting community’s marching orders on vaccines, we come full circle to the false premise of this article. Lack of evidence does not disprove or “rule out” anything. So, Dear autism readers everywhere – Caveat Emptor! Get past the headlines, use the ol' noggin, and demand accountability and good information. Our kids health depends on it.


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atmer said...

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