Any evidence that autism isn't treatable?

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zendell
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09 Feb 2008, 1:37 pm

It seems many people here don't know that genetic disorders can be treated.

Some people think that a dairy free diet can't possibly reduce autistic symptoms because autism is genetic. However, lactose intolerance is caused by genetics and can be treated by avoiding dairy.

Some people think that a gluten-free diet can't possibly reduce autistic symptoms because autism is genetic. However, Celiac disease is caused by genetics and can be treated by avoiding gluten.

Some people think zinc supplements can't treat autism because it's genetic. However, Wilson's disease is a genetic disorder that can be treated with zinc supplements to remove copper from the body. A recent study found high levels of copper and low levels of zinc in 85% of people diagnosed with ASDs.

Hemochromatosis is an inherited genetic disorder that can be treated by avoiding iron and removing blood to get rid of excess iron from the body.

Phenylketonuria (PKU) is a genetic disorder in which the body can't process phenylalanine (an amino acid found in protein). The recommended treatment is to eat a low protein diet.

There are a bunch of other genetic disorders that can be treated with special diets and vitamin and mineral supplements. How can anyone be certain that these diets and supplements can't help autistics?

The organization Defeat Autism Now! that some people here hate started out with the belief that autism is genetic and treatable with high doses of vitamins and minerals, just like some other genetic disorders. They received over 25,000 responses to their surveys and found that special diets and vitamin and mineral supplements were some of the most effective treatments for reducing autistic symptoms. http://www.autism.com/treatable/form34qr.htm

There is NO evidence that autism is untreatable. People who post that all the treatments people use are quackery because "autism is genetic - it can't be treated" need to stop. It has already been conclusively proven that some genetic abnormalities can be treated very well.



OregonBecky
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09 Feb 2008, 1:55 pm

I'll wait for the double-blind scientific studies. I've been around too many parents who are so subjective that, even when I see their kid right in front of me, unchanged, they make all kinds of claims, blinded by wishful thinking. Then the anecdotes become gospel to the others who want to find religion.

That being said, I'd rather want the culture to change, the way it has been changing to accept and embrace other minorities. It's now time for them to embrace spectrum people. My HFA son has a lot of offer society.

And I'd rather have all that autism research money go into seizure research, That's hurting my daughter more than her profound autism.


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VMSnith
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09 Feb 2008, 2:05 pm

Everybody knows that many - if not most - genetic conditions are treatable. Diabetes, heart disease, epilepsy, etc, so on.

But the surveys you cite are worthless. Surveys are subject to Selection Bias (see http://skepdic.com/selectionbias.html). People who already believe in your cure are more likely to be on your mailing list, and more likely to respond to your survey.

That's why the double-blind clinical trial was invented. It prevents people's beliefs from creating a self fulfilling prophesy.

We call this Science, by the way.

Clinical Trials show insulin helps diabetics, no matter who thinks what.

But no Clinical Trial has shown your treatment works. Because it doesn't. If it did, you wouldn't be here. You'd be on the cover of the Journal of American Medicine.



anbuend
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09 Feb 2008, 2:09 pm

I am always confused by this.

Lactose intolerance is not autism. It is an exceedingly common childhood condition. It causes pain and discomfort. Those things make it harder for anyone to do anything. It would make it harder for an autistic person to do things that are hard for them.

But for instance... I have a chronic pain condition, it resembles central or neuropathic pain. I have had it as long as I remember. It makes overload more painful than it would be otherwise. If something is very hard for me already because of being autistic, it may become impossible when the pain gets too bad.

If I treat the pain condition, I am able to do more things.

But this would be true of a non-autistic person too. Things that were only hard for them before would become impossible. And treating it would make those things go back to possible but difficult.

So why is it specifically treating autism to treat this pain condition, or any other condition an autistic person randomly happens to have?


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09 Feb 2008, 2:18 pm

Semantics may be an issue here....

Define "autistic symptoms".

There is also a HUGE difference in treating celiac, since the affected area (the intestinal tract) is directly touched and affected by the material in question. Ingested materials do not directly contact the brain in the same way. The blood/brain barrier prevents all but some chemicals in making the transfer. Again, I'm not a biochemist, but I know that some who post here are. What's the molecular structure of gluten? The size? Is it too large to pass the barrier? What transport mechanism could it use to traverse the distance to the brain and be absorbed?

Look, I don't DOUBT changes in diet can affect changes in behavior. Making the jump to the conclusion the change affected the neurology of the brain is something else. It has been quoted time and again from doctors that "sugar does not cause hyperactivity" and yet parents vehemently disagree. The problem is semantic. When doctor says hyperactive, they're talking about a specific condition, hmmmm usually considered neurobiological. When parents talk about kids "being hyper" on sugar, the behavior they're describing rarely if ever meets what a doctor would call actual hyperactivity. The kids are burning off a huge influx of food energy, in some ways like and intoxication. That's not hyperactivity, that's being drunk on sugar. I have a friend with celiac, and yes he needs to avoid gluten. He's on the spectrum, I have no sensitivity to gluten, been tested half a dozen ways including biopsy. I'm on the spectrum too. As far as dairy, those who don't have a northern European heritage often have a problem with dairy. Those of us who DO have that heritage rarely do. Changing a behavior, whether it's 'acting hyper' or the poor celiacs who have to make a break for the bathroom after eating a slice of 'za, yeah diet can affect that.

Change me being able to think the way I do? I can't see diet changing that unless my diet consisted of single malt scotch. :twisted:


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zendell
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09 Feb 2008, 2:20 pm

OregonBecky wrote:
I'll wait for the double-blind scientific studies. I've been around too many parents who are so subjective that, even when I see their kid right in front of me, unchanged, they make all kinds of claims, blinded by wishful thinking. Then the anecdotes become gospel to the others who want to find religion.

That being said, I'd rather want the culture to change, the way it has been changing to accept and embrace other minorities. It's now time for them to embrace spectrum people. My HFA son has a lot of offer society.

And I'd rather have all that autism research money go into seizure research, That's hurting my daughter more than her profound autism.


One study found a drug effective at treating autism and seizures. "When 23 children with autism were treated with pentoxifylline (150-600 mg/day), the drug was reported to be remarkably effective in 10 of the children with some of the group no longer considered to be autistic. The drug was also very effective in treating seizures." http://www.greatplainslaboratory.com/book/bk7sect2.html

It wasn't a placebo effect or wishful thinking because the drug Pentoxifylline was given to an autistic child, not to treat autism, but to treat suspected brain damage after an accident. After this treatment, the boy showed marked improvement of his autistic symptoms so someone decided to study it to see if it helped others.

The study was done 10 years ago, wasn't blinded, and probably no further research on the drug to treat autism or seizures will ever be done again because it's now off-patent and thus unprofitable.

The problem with requiring high quality studies is that they will never be conducted because they are too expensive. Drug companies would much rather study drugs to treat individual symptoms for life because it's more profitable.



zendell
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09 Feb 2008, 2:23 pm

VMSnith wrote:
But the surveys you cite are worthless. Surveys are subject to Selection Bias (see http://skepdic.com/selectionbias.html). People who already believe in your cure are more likely to be on your mailing list, and more likely to respond to your survey.


That's what Big Pharma wants you to believe but it's incorrect. Why would one treatment work in 75% but another only in 20%? Selection Bias theory = money making scheme for Big Pharma

VMSnith wrote:
That's why the double-blind clinical trial was invented...
But no Clinical Trial has shown your treatment works.


1. double-blind clinical trials are very expensive which is why they aren't used often to evaluate non-patentable drugs

2. Double-blind clinical trials have shown some of these treatments effective (such as the gluten-free/dairy-free diet and mega doses of vitamin C)



zendell
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09 Feb 2008, 2:25 pm

anbuend wrote:
I am always confused by this. Lactose intolerance is not autism...


You missed my point. My point is that genetic disorders can be treated. Therefore, the belief that autism can't be treated because it's genetic is wrong.



zendell
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09 Feb 2008, 2:34 pm

AspieDave wrote:
Define "autistic symptoms".

See DSM-IV.

AspieDave wrote:
There is also a HUGE difference in treating celiac...

Gliadorphin (from gluten) is similar to morphine. It leaks through the gut and attaches to the opiate receptors in the brain. I used to have a high pain tolerance. I went on a gluten-free/dairy-free diet, and now it's normal. Only opiates can explain that. I'd say there's enough evidence to consider this proven.

As far as semantics - I care about what's important, not whether it affects some doctors specific condition box.

Celiac disease and lactose intolerance are not a part of autism. My point is that genetic disorders can be treated with special diets. There is no reason why autism should be any different.

There is no reason to conduct expensive trials when a person can easily determine whether gluten or dairy is a problem with a simple elimination diet. It is a waste of money to conclusively prove it.



srriv345
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09 Feb 2008, 2:55 pm

zendell wrote:
AspieDave wrote:
There is also a HUGE difference in treating celiac...

Gliadorphin (from gluten) is similar to morphine. It leaks through the gut and attaches to the opiate receptors in the brain. I used to have a high pain tolerance. I went on a gluten-free/dairy-free diet, and now it's normal. Only opiates can explain that. I'd say there's enough evidence to consider this proven.

As far as semantics - I care about what's important, not whether it affects some doctors specific condition box.

Celiac disease and lactose intolerance are not a part of autism. My point is that genetic disorders can be treated with special diets. There is no reason why autism should be any different.

There is no reason to conduct expensive trials when a person can easily determine whether gluten or dairy is a problem with a simple elimination diet. It is a waste of money to conclusively prove it.


I think you're making some false analogies here. Yes, lactose intolerance and celiac disease are largely genetic conditions which can be helped via diet. But they're conditions which are specifically defined as affecting the digestive system. Autism is currently defined as affecting the brain, so the two can't really equated. Do you suppose hemophelia can be helped by diet, too? After all, it's genetic.

I don't agree that scientifically testing the GF/CF diet is just a waste of time. The diet can be expensive and cumbersome to some people, so trying it out is not as easy as you make it seem. Furthermore, there is such a thing as the placebo effect (or placebo-by-proxy). That's why we need scientific studies--to objectively measure the effects of certain "treatments." We can't just assume that because someone "thinks" it works, that there is actually any real difference, or that the treatment in question is the only variable that's been altered.



OregonBecky
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09 Feb 2008, 3:01 pm

All this cure talk is causing me to remember the years that my daughter was in school and a new anecdotal cure or treatment made the rounds. Groups of emotion driven parents would bully the schools to jump through the latest unproven treatments until time proved that the treatments were as silly as snake oil, Then the parents would bully the schools to do the next treatment, taking real resources away from the special ed kids.

It also made school personnel not respect the parents' credibiltiy very much, although they sympathized.

The schools were clueless about how to help ny daughter but these nutty parents only made things worse. They aren't furthering research. They're only dividing people and hindering real research.

There's something really broken with those curebies. They're irrational and their kids ulimately pay the price.


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zendell
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09 Feb 2008, 3:02 pm

srriv345 wrote:
I think you're making some false analogies here. Yes, lactose intolerance and celiac disease are largely genetic conditions which can be helped via diet. But they're conditions which are specifically defined as affecting the digestive system. Autism is currently defined as affecting the brain, so the two can't really equated. Do you suppose hemophelia can be helped by diet, too? After all, it's genetic.

I don't agree that scientifically testing the GF/CF diet is just a waste of time. The diet can be expensive and cumbersome to some people, so trying it out is not as easy as you make it seem. Furthermore, there is such a thing as the placebo effect (or placebo-by-proxy). That's why we need scientific studies--to objectively measure the effects of certain "treatments." We can't just assume that because someone "thinks" it works, that there is actually any real difference, or that the treatment in question is the only variable that's been altered.


Phenylketonuria (PKU) is a genetic disorder that affects the brain and is treatable with a special diet.

If you want to think everyone has psychological problems (placebo effect) and are incapable of determining whether diets or treatments help them because they are mentally incapable or stupid then go ahead but I will benefit from their findings. It's your loss.



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09 Feb 2008, 3:06 pm

zendell wrote:
You missed my point. My point is that genetic disorders can be treated. Therefore, the belief that autism can't be treated because it's genetic is wrong.


Oh, okay. Yeah that's true.

Personally I think the entire idea of "treating" autism, makes no sense, but for more semantic reasons -- I'm not against autistic people getting help or changing or growing up or anything.


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anbuend
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09 Feb 2008, 3:11 pm

zendell wrote:
If you want to think everyone has psychological problems (placebo effect) and are incapable of determining whether diets or treatments help them because they are mentally incapable or stupid then go ahead but I will benefit from their findings. It's your loss.


Everyone does have biases that help them in some situations and hinder them in others. The human mind is primed to look for certain patterns above others. It can lead anyone to form false ideas about what is happening, or why it is happening.

It's not stupidity, and it's not an insult. It's just a fact about human nature. It's how the vast majority of people's brains work. The invention of science was in part to counteract this bias, not only in medicine but in many other areas as well. If you think it's just about being called stupid, and then wave it off as just an insult, you miss the point that the bias is real and can lead people to not understand why something seemed to work.


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09 Feb 2008, 4:28 pm

zendell wrote:
It has already been conclusively proven that some genetic abnormalities can be treated very well.


And there's many that can't... Down Syndrome, Cystic Fibrosis, and Turner Syndrome, just to name a few...

Perhaps you should reword your postings... instead of saying "genetic abnormalities can be treated", you should be emphasizing that "the symptoms of genetic abnormalities can be treated" Not only is that a more correct statement, it also avoids the ire of anti-cure people like me... (I am against the word "cure", but to treat people so that they can function independently in the world is perfectly fine so long as you don't actually change who the person is)



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09 Feb 2008, 4:33 pm

If you look at the DSM 299.8 and ICD 10 F84.5 definitions of AS, a lot of it is behavioural. So change your behavior - et voila! You're cured. However your brain will be still be wired up the same. You'll now be sub-clinically autistic. I think we're several hundred years away from being able to alter the structure of the adult brain...


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