interesting...

Oh dear, oh dear. This site is a goulash of fact, fiction, opinion, real science, pseudo-science, misunderstood and misinterpreted science, all cooked up together in a stew and served up by an apparently well-meaning but (by his own admission) totally unqualified person. Please take this with huge grains of salt; there is truth in here but there are also falsehoods and unfounded theories, andt there is no easy way to see which is which.

Oh dear, oh dear. This site is a goulash of fact, fiction, opinion, real science, pseudo-science, misunderstood and misinterpreted science, all cooked up together in a stew and served up by an apparently well-meaning but (by his own admission) totally unqualified person. Please take this with huge grains of salt; there is truth in here but there are also falsehoods and unfounded theories, andt there is no easy way to see which is which.

Very much agreed with Victoria here.

No doubt that Dr. Grandin is a well known person with hfa but to say that the way she thinks is the way all autistic people think ( she does imply) is an overstretch. I think it is interesting. Many autistic people are strongly visual, but not all are.

The author states that several areas of the brain are clearly involved in autism. THere is no particularly clear region of the brain effected. THe most commonly mentioned is the cerebellum. Still we don’t know if it is causal or the result of having autism. Not all people with autism have any damage in the cerebellum either.

I have never heard of a dual dx of AS and hfa or PDD!
It isn’t a dual dx in any of sense of the word, since it is in the same spectrum.

While many parents claim gluten and casein diets are helpful and they may be in some cases, it is pretty much anecdotal, there is no well established research. Even if it would help many more kids than it does, we still don’t know why. To say that there is some sort of opiate basis— never heard this before. Even if the opiate basis were true, the idea that the casein and gluten free diets eliminate it is flawed at best.

Rather a stretch imo. There is also no drug treatment for autism. Autistic people have been treated with a wide range of drugs, but there is no clear “winner”— everything from megadoses of vitamins, SSRIs, major tranquilizers, etc. Biofeedback has not been found particularly helpful with autism.

Here is a good AS link:
www.udel.edu/bkirby/asperger/

I think the Nat’l Institutes for Health have done research on autism. For other research I’d recommend:
www.canfoundation.org
And perhaps Yale as well as Autism Soc of America:
http://www.autism-society.org/site/PageServer

—des

[quote]While many parents claim gluten and casein diets are helpful and they may be in some cases, it is pretty much anecdotal, there is no well established research. Even if it would help many more kids than it does, we still don’t know why. To say that there is some sort of opiate basis— never heard this before. Even if the opiate basis were true, the idea that the casein and gluten free diets eliminate it is flawed at best. [/quote]

Actually, there is some research into this and for a subset of children with autism it appears to be a significant part of their autistic behaviors. Opiods were first discovered in the urine of certain autistic children in the mid 80’s, specifically gluteomorphin and caseinmorphin, two peptide from gluten and casein respectively. These can be found in trace amounts in nearly all of us, but were found in elevated amounts in autistic children.

Both peptids have ben established to bond with the same receptors in the brain that opiates do, hence there being termed “opiods”. For a good recounting of the science behind this, please read Seroussi’s book.

The peptide “theory” as it applies to autistic children is the basis of the GFCF Diet, which has been found in repeated reports to benefit between 25 and 40% of the general population of autistics. (Whether it similarly affects Aspies is up in the air; few Aspies seem to benefit from this elimination diet, leading to the divisve stance in many online communities between Aspies and parents of auties. Donna Williams wrote a very good essay on this very subject back in ‘01 I believe.) Even mainstream medicine is beginning to pick up on this with the suggestion to try it.

Calling something anecdotal is a cop-out that does not address the issue presented thru swift dismissal, as though parents, practitioners and other professionals could not possibly know what they have witnessed. This tactic is the tool of those who sit in presumed or assumed positions of authority who do not wish to rock the boat of their expertise with bothersome new developments. We have seen groups like the CDC, NIH and IOM use this tactic before; claims tobacco led to cancer spent nearly 4 decades dismissed as anecdotal, claims of the dangers of Agent Orange spent nearly 2 decades thus and claims of Gulf War Syndrome spent almost 10 years being dismissed outright in this manner.

Recall that “anecdotal” is nearly synonomous with “eyewitness reporting”, which in law represents one of the truest forms of evidence that there is.

Not that I agree with the theory that Xiomara’s sight proposes… To tell the truth, I do not see how his theory ties in at all with autism, and he himself says as much, that it does not. It puzzles me as to why he even mentioned it.[/quote]

Casein and gluten elimation diets are prolly one of the most heavily controversial aspects in autism. Some people swear by them and others swear at them. :-) Though I suppose lumping hfa and classical autism doesn’t help in this regard.

There are children who appear classically autistic for some portion of their lives (up to about 4-5) and then slowly they develop normal speech and language and adaptive skills, anything standing around that is done with these kids will help them including time all by itself. AFAIK, there is no way effective way to eliminate that group of children from the mix.

I wouldn’t discourage some parents with classically autistic kids to try that diet but the article listed covered so many far flung ideas ranging from useless to interesting as to be of no use at all. And then adding the bit about video game addiction minicking autism, which turned out to be a tease.

I think CAN has researched the gluten and casein thing and if someone wants to read their stuff, that’s great.

—des

http://www.nlm.nih.gov/medlineplus/news/fullstory_17819.html

http://www.safeminds.org/pressroom/press_releases/20040518_AutismAuthorsNetwork.pdf

<<Recall that “anecdotal” is nearly synonomous with “eyewitness reporting”, which in law represents one of the truest forms of evidence that there is.>>

Hi Dad,

Other than to say I agree with Victoria and Des, I will refrain from commenting on the link by the first poster (sorry I forgot your name). I have discussed this subject enough on an email list:)) I belong to.

But I wanted to respond to your comment above. Unfortunately, I don’t remember where I read this but I could swear that the information said that actually, eyewitnesses are not as reliable as yu might think. I will try to see if I can find something that elaborates on this point as I don’t like to present what I say as facts if I can’t provide a good link.

PT

Hi Dad,

I can’t believe I forgot a perfect example in my own backyard, the DC sniper case. Remember all those eyewitnesses who swore they saw a white van? It turned out the snipers had been using a dark colored car from the beginning of their shooting sprees until thank goodness, they were finally caught.

PT

Eyewitness evidence is accepted in court as the best we’ve got, not as perfect. There’s a huge difference there.
There has been a lot of discussion on the weaknesses of eywitness evidence; if you read Scientific American or Discover or go on the web to Science Daily this is an issue that crops up often.

I saw just a while ago a very interesting short documentary (on CBC I think) which touched on this. Study participants and students in classes were asked to watch a video of a basketball game and keep track of the ball. After they watched with great attention for several minutes, the researcher stopped the tape and asked what they thought about the gorilla. Half the participants said “What gorilla?” Several in each group became angry and accused the researcher of making it up. He rewound the tape in front of them — says he has to do this or many are sure it’s a fake — and replays it and sure enough, there’s a person in a gorilla suit moving around right beside the players.
The point is that while paying attention to one thing, you may not even see a gorilla. Eyewitness evidence is unfortunately always subject to bias and attention problems.

There is also the eternal statistical problem of Dog Bites Man — not news; Man Bites Dog — news. The point is that we notice the unusual and different, and we discount the ordinary and daily.
In the particular discussion of therapies, if one kid gets much better, that’s news, and we take note of it; if several hundred others make little or no change, that’s not news. This is why we need statistical studies, to see whether more kids get better on a therapy than get better if no intervention is taken at all. Of course, this leads to the opposite problem, that a good therapy may be discounted because there aren’t that many kids of a suitable profile and it takes a lot of time and money to do all the testing. There are no easy answers.

You both bring up good point about “eyewitness”, and you are both correct.

PT1, the fact that Muhammed was not found ina white van does not mean that “witnesses” to some of the DC shootings were wrong in reporting they saw a wite van leaving the scene. With the great number of white vans and panel trucks on the road (as evidenced by all the traffic stops made during that time) it is highly likely that they were indeed correct in stating they saw one.

A similar thing may be occuring with the GCFC Diet and autism - children on the Diet may well be improving, but the improvements are being wrongfully credited to the Diet. I do not believe that because parents who are successfully using the Diet (and who have supporting voices in the professionals who work with their children to attest to the gains, including some drs. and teachers) have too many diverse factors in their lives for some other single element to be the actual responsible factor. They come from many backgrounds, have a range of educational settings, use a wide range of supplemental therapies, some take various vitamin supplements, some do not, some employ chelation, some do not, etc. Amongst these parents who attest to their child’s gains, the Diet is the one consistant factor.

Victoria, you point out that eye-witness is far from perfect (and I certainly agree with that!) but legally, it represents about the best we have. The same holds true in this case. There is a huge dearth of science in many aspects of LD’s and other conditions, and autism is one of the least understood. Many of the “professionals” and “experts” who are the first to dismiss claims of triggering mechanisms (especially as it relates to measles and thimerosal) citing “multiple paths of etiology” are also the first to dismiss things that help some auties because “results are inconsistant”. To me this is a real no-brainer; if autism results from a multitude of triggers, then of course there will likely be a multitude of recovery methods.

Many people wrongfully equate “lack of evidence” to mean “proof the theory i invalid” when that is not the case at all. What we need is a better system of looking at the problem than what is in place now. Because the overwhelming majority of scientific and medical testing is sponsored or conducted by industry, studies are designed to either generate a new profitable commodity (like a drug or vaccine) or to exxonerate an existing profitable product. This leaves out a whole lot of things that have great potential, but little push from the view-point of business. The Diet falls under this.

Take for example tobacco. Few would argue at this point that tobacco is one of the most health damaging things we have - directly linked with both heart disease and cancer, the number 1 and 2 killers in America, if we would simply stop producing cigarettes we would do more to improve our overall health than almost anything else we could do. And yet it continues to be “encouraged” thru legal advertisement, product endorsement through entertainment media, govt. subsidies, etc. because it also produces a lot of tax revenues. Would we as a society be better off sacrificing the taxes tobacco generates and taking the savings that would result in our public health care system? Ethically, maybe, financially maybe not.

My child did not seem to benefit from our brief trial with the Diet or using enzymes which would accomplish almost the same thing as elimination of offending proteins. That does not mean I do not think the Diet works for other children. For a chance to discuss the Diet with parents who have seen the difference that it can make, see the yahoo group gfcfdiet.

Because of my tendency to perseveration, I [i]had[/i] to google up some links dealing with the gfcf aspect of autism.

http://osiris.sunderland.ac.uk/autism/index.html

http://www.autism.org/leakygut.html

http://www.autism.org/allergy.html

http://www.autismndi.com/studies.htm

http://www.aal.xohost.com/urinary.htm

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15106205

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14611720

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12223079

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12168688

Sorry the PubMed entries are just citations. I do not have a subscription to get the actual text. Perhaps someone here on this board does and could clip the full text for our perusal…

I have long appreciated your perseverating :) We can’t all perseverate on everything and having somebody take that time to come up with the nitty gritty is very helpful. (It’s why I lurk on the school librarians’ listserv, too — a mess of information junkies :))

Well, I am NOT autistic but I am on a no-gluten no-lactose diet, have been for twelve years now — to the extent that I have to pre-treat my thyroid medicine with liquid Lactaid because it has trace amounts of lactose. I am on this because of severe celiac disease made worse by years of mistreatment.

This diet is not at all easy to do. There is hidden gluten and lactose *everywhere*. “Natural flavouring” “Whey products” “Natural spelt”. And on and on forever. So it can take a year or more to get it running even five days out of seven. Then you have the problems I encountered with my daughter’s school where they dealt with her allergy list by giving her “treats” containing large amounts of milk and telling her to lie to me about it. And food manufacturers and restaurants who either lie or get careless.
So results are more than likely to be intermittent and go three steps forward and two back.

I’m certainly not arguing against the use of this diet in working with autistic kids; I’m just advocating caution in making cause-effect claims. If you claim a miracle cure and it doesn’t hold up, you’ve hurt your case because nobody will then listen to reasonable reports of moderate gradual improvement in a certain proportion of cases.