Jemaleddin

CAN, DAN! [sic] and the other major advocacy groups run by the parents of autistic children are:

a) obsessed with the idea of mercury causing autism, though there is absolutely no reason to believe such a thing. Not environmental mercury, not Thimerosol, nothing. We know what mercury poisoning looks like, and it isn't autism.

b) obsessed with "curing" autism which is a ridiculous idea because autism, whatever the cause, results in a particular brain physiology and way of thinking. This means that a "cure" would require changing the physical structure of the brain (impossible) and the entire personality of the autistic. That's the equivalent of killing the person in question and replacing them with a "normal" person.

c) obsessed with ridiculous "treatments" that are at best snake oil and at worst harmful. The snake oil comes in the form of grape-seed oil, "Ora-Placenta" capsules and "RNA in water". The harmful treatments are chelation (to remove the mercury) and Lupron (a chemical emasculator given to sex offenders) treatments. None of them are encouraged by actual doctors or researchers.

The problem with being "more progressive than most medical research" is that your treatments aren't based on any evidence. And when your entire organization rests on a premise (curing autism) that is both impossible and (IMO) unethical, I feel free to call names.

Anyone who wants to know how actual autistics or the parents of autistics that are in the "reality-based community" feel about this stuff would be well served by checking out neurodiversity.com or any of the blogs linked from autisum-hub.co.uk - especially ballastexistenz.autistics.org. Amanda has taught me more about the autistic mind from her blog than any of the books or studies I've read.

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Jemaleddin

It's really hard to know how to feel when you read an article like that. I'm glad that there's 50% more funding to help kids like my son, I really am, but the fact that it's being pushed through by the quacks at CAN makes me a little leery about where that funding will go.

As a full-time member of the autism community, I'm also struck by the codewords: environmental causes, for instance, means "mercury" when CAN is involved. And epidemic is the favorite word of autistic's parents who like to pretend that adult autistics don't exist.

badger99

"but the fact that it's being pushed through by the quacks at CAN makes me a little leery about where that funding will go."

what?? I am not too involved - but some of the ideas that I read at CAN are waaay more progressive than most medical research.

The whole idea of a collaborative genetic bank for researchers to draw thousands of samples from and feed data back to - is the way that things should be done.

do you have any evidence that they aren't doing the right thing? Or are you just into name-calling?

pkimelma

This is one of the sad aspects of medicine and diseases (whether of physiology or external): we do not know who to trust. Cases like Lorenzo's oil have emboldened parent's groups (and groups of those afflicted with various diseases) to pressure for more "progressive" approaches, but many of them are held in the sway of quacks and nuts (who can easily promise a lot since they do not care what the actual outcome is).
I also think medical researchers and pharma need to realize why they are often not trusted by these groups. Part of the problem is that there is a self-protective aspect of both secrecy and defensiveness. Although I do not believe the mercury connection is real, one can see that the reaction of the industry (esp. with regard to Thimerosol preservative) makes it look like a cover-up, rather than simple lack of evidence. As we have seen with the recent coated stent issue, sometimes these things do cause unexpected problems. But, how to provide these groups with the information that would allow them to be part of a solution rather than just lobbying is yet unclear, especially with lawyers hovering around. Fear of lawyers and their unjustified lawsuits does not help the free flow of information (consider Silicone breast implants, cell phone "radiation", and all the other insane lawsuits based on creative "interpretation" of data, and you can see why industry and even researchers are loathe to expose information publicly).

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Jemaleddin

Well, the problem for parents of autistics is the same problem facing consumers in general: without being a scientist, how do you know when you can trust scientific claims? And when you receive contradictory advice from two experts, how do you know which one to trust?

What's especially hard is that snake oil salesman can make their products sound like the make sense to the average person, because they're not tied down by the truth. But at some point, consumers have to figure out that they've been taken in. Check out this page and scroll down to the list of "medicines" that one parent is giving his son to "cure" him of autism. Yipes! Shouldn't that guy realize that even cancer and AIDS patients don't take that many pills?

Anyway, I don't want to become the Freakonomics Autism troll, so I'll shut up. Thanks for listening.

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nico1e

"Check out this page and scroll down to the list of “medicines” that one parent is giving his son to “cure” him of autism. Yipes! Shouldn't that guy realize that even cancer and AIDS patients don't take that many pills?"

I agree - all those medications for a kid! That seems to border on child abuse. And who knows what all those things are doing to this kid's development?

pkimelma

I agree that it is bordering on child abuse. The risk of mixing so many different things alone is worrisome. This sounds almost like Munchausen Syndrome by Proxy, since the complex cocktail they are feeding the kid is likely to create many more symptoms and attention.

annaraven

Jemaleddin wrote a lot of good information about CAN and the issues with the "cure autism now" camp. Thank you for posting it. I don't think you're being a "troll".

As an Aspie (a person with Asperger Syndrome), I found it an emotional relief to finally know what was wrong all these years. I got diagnosed finally after my son was diagnosed. I was talking with the doctor about the symptoms and was shocked to realize that I fit the DSMIV description as much as my son (more in some ways, less in others). His father and I are both geeks - so I believe there is something to the Assortive Mating theory.

While I'm intrigued by the studies, I worry that the research will be abused, especially by parent members of such groups as CAN. I'm pretty happy that there *aren't* medications for Aspergers and Autism (so the misguided can't force them onto my son or I).

I also worry that there are selective advantages to ASD that are not being accounted for. After spending hours today bulldogging problem for a class, the ability to focus intensely on an issue, is one aspect of Aspergers that I really appreciate (even if it does occasionally have a negative impact - like late dinner - on those around me).

My personal pet theory is that there are several genes involved, and that when two ASD people breed, that (depending on the mix of genes) the offspring can exhibit a variety of different strengths or weaknesses. Kind of like a multi-gene version of Sickle Cell Anemia - in the right environment, the heterozygous genotype is advantageous (because they are protected from Malari) while the homozygous suffers the effects of overcompensation.

In any case, it's 2:37am and I'm going to bed now.

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qualityg

The money provided is miniscule compared to what could happen if the Center for Disease Control (CDC) Records ever became public on this topic.

badger99

there is absolutely nothing wrong with funding a multi-displinary gene bank that researchers can draw on to try to determine the causes of the disease. It is way more progressive than most ways research is done. doing a study with 20 samples and publishing it is garbage. What CAN is doing in this respect is part of the way things should be done.

That is one of the big things that I can see that CAN is doing. While it is possible to 'cure' a disease without knowing the cause...the probability is much lower.

Just judging CAN on what their site says and what they are funding - I really don't find much to argue with.

When I think of the mission of curing a disease - I think the first thing you need to do is find the cause. Think about the Apollo Project. They had to get to the moon with no idea as to how to do it. The right solution wasn't to give 50K grants to small researchers to find answers to small questions. It was to get a big team of smart people from many areas into the same room and figure out what they needed to do. Think big. A lot of what CAN seems to be doing is thinking big. IMHO - that is what needs to happen.

Your premise that it can't be cured is kinda silly, actually. How do you know? if we don't know the cause, how can you presume that there is no cure?

And before you think that I don't know what you are going through - my brother is autistic. And, no, I have nothing to do with CAN.

But the all of the criticisms that you have put forth -- I can't find in any of their on-line literature. I only find the kind of big thinking that I think is needed for multi-variable disease - which is what autism probably is.

Maybe the better question is - how would you propose to spend this large increase in money instead?

From my perspective, it doesn't seem like CAN is dumping it all into mercury research. But maybe I am wrong.

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Jemaleddin

One of the big things that CAN has done is to help find a cure for Down's Syndrome in the form of improved prenatal testing. I guess the cure is that you can have an abortion. They're working on genetic screening of autism for the same reason.

I guess you could classify prevention as a cure, but it's not what I want. The cure I'm interested in is increased understanding and appreciation for what makes autistics unique and important members of the community. I want the kind of cure where the rest of the world wakes up and accepts autistics outside of their own preconceived notions of normality. I want a cure for the rest of society so that they can learn to love and appreciate my son just as much as we do.

How any of this fits into Freakonomics is left as an exercise for the reader.

Jemaleddin

CAN, DAN! [sic] and the other major advocacy groups run by the parents of autistic children are:

a) obsessed with the idea of mercury causing autism, though there is absolutely no reason to believe such a thing. Not environmental mercury, not Thimerosol, nothing. We know what mercury poisoning looks like, and it isn't autism.

b) obsessed with "curing" autism which is a ridiculous idea because autism, whatever the cause, results in a particular brain physiology and way of thinking. This means that a "cure" would require changing the physical structure of the brain (impossible) and the entire personality of the autistic. That's the equivalent of killing the person in question and replacing them with a "normal" person.

c) obsessed with ridiculous "treatments" that are at best snake oil and at worst harmful. The snake oil comes in the form of grape-seed oil, "Ora-Placenta" capsules and "RNA in water". The harmful treatments are chelation (to remove the mercury) and Lupron (a chemical emasculator given to sex offenders) treatments. None of them are encouraged by actual doctors or researchers.

The problem with being "more progressive than most medical research" is that your treatments aren't based on any evidence. And when your entire organization rests on a premise (curing autism) that is both impossible and (IMO) unethical, I feel free to call names.

Anyone who wants to know how actual autistics or the parents of autistics that are in the "reality-based community" feel about this stuff would be well served by checking out neurodiversity.com or any of the blogs linked from autisum-hub.co.uk - especially ballastexistenz.autistics.org. Amanda has taught me more about the autistic mind from her blog than any of the books or studies I've read.

Read more...

Jemaleddin

It's really hard to know how to feel when you read an article like that. I'm glad that there's 50% more funding to help kids like my son, I really am, but the fact that it's being pushed through by the quacks at CAN makes me a little leery about where that funding will go.

As a full-time member of the autism community, I'm also struck by the codewords: environmental causes, for instance, means "mercury" when CAN is involved. And epidemic is the favorite word of autistic's parents who like to pretend that adult autistics don't exist.

badger99

"but the fact that it's being pushed through by the quacks at CAN makes me a little leery about where that funding will go."

what?? I am not too involved - but some of the ideas that I read at CAN are waaay more progressive than most medical research.

The whole idea of a collaborative genetic bank for researchers to draw thousands of samples from and feed data back to - is the way that things should be done.

do you have any evidence that they aren't doing the right thing? Or are you just into name-calling?

pkimelma

This is one of the sad aspects of medicine and diseases (whether of physiology or external): we do not know who to trust. Cases like Lorenzo's oil have emboldened parent's groups (and groups of those afflicted with various diseases) to pressure for more "progressive" approaches, but many of them are held in the sway of quacks and nuts (who can easily promise a lot since they do not care what the actual outcome is).
I also think medical researchers and pharma need to realize why they are often not trusted by these groups. Part of the problem is that there is a self-protective aspect of both secrecy and defensiveness. Although I do not believe the mercury connection is real, one can see that the reaction of the industry (esp. with regard to Thimerosol preservative) makes it look like a cover-up, rather than simple lack of evidence. As we have seen with the recent coated stent issue, sometimes these things do cause unexpected problems. But, how to provide these groups with the information that would allow them to be part of a solution rather than just lobbying is yet unclear, especially with lawyers hovering around. Fear of lawyers and their unjustified lawsuits does not help the free flow of information (consider Silicone breast implants, cell phone "radiation", and all the other insane lawsuits based on creative "interpretation" of data, and you can see why industry and even researchers are loathe to expose information publicly).

Read more...

Jemaleddin

Well, the problem for parents of autistics is the same problem facing consumers in general: without being a scientist, how do you know when you can trust scientific claims? And when you receive contradictory advice from two experts, how do you know which one to trust?

What's especially hard is that snake oil salesman can make their products sound like the make sense to the average person, because they're not tied down by the truth. But at some point, consumers have to figure out that they've been taken in. Check out this page and scroll down to the list of "medicines" that one parent is giving his son to "cure" him of autism. Yipes! Shouldn't that guy realize that even cancer and AIDS patients don't take that many pills?

Anyway, I don't want to become the Freakonomics Autism troll, so I'll shut up. Thanks for listening.

Read more...

nico1e

"Check out this page and scroll down to the list of "medicines" that one parent is giving his son to "cure" him of autism. Yipes! Shouldn't that guy realize that even cancer and AIDS patients don't take that many pills?"

I agree - all those medications for a kid! That seems to border on child abuse. And who knows what all those things are doing to this kid's development?

pkimelma

I agree that it is bordering on child abuse. The risk of mixing so many different things alone is worrisome. This sounds almost like Munchausen Syndrome by Proxy, since the complex cocktail they are feeding the kid is likely to create many more symptoms and attention.

annaraven

Jemaleddin wrote a lot of good information about CAN and the issues with the "cure autism now" camp. Thank you for posting it. I don't think you're being a "troll".

As an Aspie (a person with Asperger Syndrome), I found it an emotional relief to finally know what was wrong all these years. I got diagnosed finally after my son was diagnosed. I was talking with the doctor about the symptoms and was shocked to realize that I fit the DSMIV description as much as my son (more in some ways, less in others). His father and I are both geeks - so I believe there is something to the Assortive Mating theory.

While I'm intrigued by the studies, I worry that the research will be abused, especially by parent members of such groups as CAN. I'm pretty happy that there *aren't* medications for Aspergers and Autism (so the misguided can't force them onto my son or I).

I also worry that there are selective advantages to ASD that are not being accounted for. After spending hours today bulldogging problem for a class, the ability to focus intensely on an issue, is one aspect of Aspergers that I really appreciate (even if it does occasionally have a negative impact - like late dinner - on those around me).

My personal pet theory is that there are several genes involved, and that when two ASD people breed, that (depending on the mix of genes) the offspring can exhibit a variety of different strengths or weaknesses. Kind of like a multi-gene version of Sickle Cell Anemia - in the right environment, the heterozygous genotype is advantageous (because they are protected from Malari) while the homozygous suffers the effects of overcompensation.

In any case, it's 2:37am and I'm going to bed now.

Read more...

qualityg

The money provided is miniscule compared to what could happen if the Center for Disease Control (CDC) Records ever became public on this topic.