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Suggested rule change: Prohibition of "cure peddling"

oregano

So buzz off!
V.I.P Member
Today we had a problem with somebody registering on the forum simply to promote a "miracle cure for autism". Apparently this is a somewhat recurring problem on Autism Forums. The rules already prohibit discussion of vaccines, so I would like to suggest that a rule be added to prohibit discussion of "autism cures" that inevitably consist of extreme diets and/or use of dangerous chemical treatments like chelation or Miracle Mineral Solution. The rule should also say that anybody who appears to have made an account on AF solely to push an autism "cure" will be immediately and permanently IP banned. If there is such a rule, it needs to be noted in the same way that the vaccine rule is. If not, there needs to be such a rule. Anybody who seeks to "troll" by discussing disruptive subjects should never be tolerated.
 
I think this is a good idea. I can understand why the discussion today got locked - it can be a trigger topic and I don't blame a lot of people for reacting negatively (though many appeared understanding or exercised restraint - good people, them).

I'd like to suggest one modification: Cures or treatments can be discussed in terms of referencing/citing/quoting actual scientific studies.

Instant, permanent IP banning seems a bit harsh to me, but I don't have a better solution. It would be nice to give someone a grace period or one strike before banning, but that creates a broad gray area that trolls could operate in. For instance, I honestly couldn't tell you if today's discussion was started by someone truly well-meaning (and gullible), or by a troll / self-promoter. So, bad actors could permanently exist in this gray area as long as they appear well-meaning. Clearly there needs to be bright-line rule.
 
There is the idea that individuals who come here with cures, are able to hear from us. In that way they may hear another perspective.

Possibly, that begins the thinking process on what autism is and is not.

Simply planting the ideas may be enough for some to question the cures.
 
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I agree. a permanent ban seems to be an appropriate punishment for those who *truly* believe such "cures"

people who were merely duped into believing it, id be more forgiving of, though.
 
I have trouble comprehending the idea of being offended for this. We know people like that exist, so why does it suddenly induce emotion when in our view?

I'd be curious to know what would happen if the only response to the thread had been @tree's list of excellent questions and then silence until the OP responded. The only scenario in which there is a benefit seems to me be one in which the person is allowed to express themselves fully.

But then again, I used to listen to those people on campus who want to talk to you about the Bible and when someone is against gay people I'm curious to hear them, too, and I'd love to hear an extremist of any kind explain their reasoning. Am I just odd in this way?
 
Yes, I agree with banning such topics; I find it highly annoying that people think they can change us and mold us the way they'd like and come here to try and get oblivious people to listen to them.

I'll never forget the last couple times people have tried that, especially the one creep this last Summer/Spring (Spring/Summer of 2018) who wanted Members photos (more important, a picture of their face) to "magic their autism away"
 
There is the idea that individuals who come here with cures, are able to hear from us.
In that way they hear another perspective.

Possibly, that begins the thinking process on what autism is and is not.

I think it is important to discuss with genuine people. The discussion though would be about the social model of disability - not fixing autism but making society more accomodating.
But this OP is clearly a sale pitch, asking to contact them. Maybe drawing a line at this?
 
I generally agree about this (and vaccines), but with some caveats.
  • If someone has a treatment for common co-morbid conditions and describes it as such, I want to hear about it. A blanket ban of "cures" may discourage that dialogue.
  • I am sitting on a vaccine story from a different perspective that will be huge for other autistics. (I do not believe for a second that they cause autism, mine or anyone else's.) Because of the ban on that topic, I cannot openly share it here.
At least, one of our own members has recommended a certain regimen of vitamins [B-complex?] for combating depression. That is fair game.
 
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He didn’t give us a list of foods high in MSG, instead he gave the specific name of a diet. I checked out the website and very quickly they ask for $20 for a list of foods that are on this diet.
It’s a total rip off. I’m 99% sure.
It really makes me angry that someone would take advantage of parents with children on the spectrum.
 
But then again, I used to listen to those people on campus who want to talk to you about the Bible and when someone is against gay people I'm curious to hear them, too, and I'd love to hear an extremist of any kind explain their reasoning. Am I just odd in this way?
Odd, yes, but probably better off for being odd in that way.
 
But this OP is clearly a sale pitch, asking to contact them. Maybe drawing a line at this?

It may well be an advertisement for donations or paying for downloads to this site:

Unblind My Mind

The blood-brain barrier and glutamate
....
This organization does not allow net glutamate entry to the brain; rather, it promotes the removal of glutamate and the maintenance of low glutamate concentrations in the **ECF. This explains studies that show that the BBB* is impermeable to glutamate, even at high concentrations, except in a few small areas that have fenestrated capillaries (circumventricular organs). Recently, the question of whether the BBB* becomes permeable in diabetes has arisen. This issue was tested in rats with diet-induced obesity and insulin resistance or with streptozotocin-induced diabetes. Neither condition produced any detectable effect on BBB* glutamate transport.
*Blood-brain barrier **Extracellular fluid
blood-brain barrier and glutamate

Note: There is the idea that glutamate/MSG is converted into glutamine in miniscule amounts. Have just read several studies. Have yet to find conclusive proof that MSG/glutamate crosses the blood-brain barrier.

Fact is even if it does cross the blood-brain barrier as glutamine, that would mean that 60% of the world's population in Asia would have autism from ingesting msg almost daily as per the OP's reid diet suggestion.


MSG is produced by the fermentation of starch, sugar beets, sugar cane or molasses.

It's used in many countries daily as unami or a flavour enhancer in it's manufactured form.

So it's truly not the bugbear that it's made to be in this situation. It can possibly cause allergic reactions but never, as most of us know, autism.
 
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I know mine likely won't be a popular opinion, but I don't think a blanket ban that would include the poster in question would help us.
When it comes to treatments that are known to be harmful (such as chelation & MMS as already mentioned), then yes anyone promoting those is not doing us any favours nor likely to be open to discussion that challenges their views. A ban on those would not be unwelcome.
When people wish to discuss things like ABA or diets (as in this case) I personally consider that in a different league. Not only are such people often more open to discussing their views, it helps to inform us of what's going on outside this forum. Many people do not engage with the wider community and use this forum as their primary or even sole contact with the wider autistic community.
I'll be honest with everyone and say that I was not proud of the way some of us conducted ourselves towards that member. I understand the feelings behind it and I share them, but if we seek to learn more and/or to challenge, hostility will only encourage a defensive and dismissive reaction.
Every time someone comes here with such a tale we have an opportunity both to learn and to educate. Such opportunities are valuable and may, indirectly, help another autistic person who is the recipient of the treatment should it turn out to be harmful or pointless.
We must look after our own and if that sometimes means we must tolerate opinions that are contrary to our own, it is a price we must pay if we wish to create a better world for us all. We cannot change points of view without engaging them.
 
I know mine likely won't be a popular opinion, but I don't think a blanket ban that would include the poster in question would help us.
When it comes to treatments that are known to be harmful (such as chelation & MMS as already mentioned), then yes anyone promoting those is not doing us any favours nor likely to be open to discussion that challenges their views. A ban on those would not be unwelcome.
When people wish to discuss things like ABA or diets (as in this case) I personally consider that in a different league. Not only are such people often more open to discussing their views, it helps to inform us of what's going on outside this forum. Many people do not engage with the wider community and use this forum as their primary or even sole contact with the wider autistic community.
I'll be honest with everyone and say that I was not proud of the way some of us conducted ourselves towards that member. I understand the feelings behind it and I share them, but if we seek to learn more and/or to challenge, hostility will only encourage a defensive and dismissive reaction.
Every time someone comes here with such a tale we have an opportunity both to learn and to educate. Such opportunities are valuable and may, indirectly, help another autistic person who is the recipient of the treatment should it turn out to be harmful or pointless.
We must look after our own and if that sometimes means we must tolerate opinions that are contrary to our own, it is a price we must pay if we wish to create a better world for us all. We cannot change points of view without engaging them.
I refrained from commenting, because I couldn't say anything nice. That being said someone who claims to have found a "cure" for autism is sorely mislead. Even if something did help 1 person, it doesn't mean that it's going to work for everyone. Also the word "cure" and "autism" put together makes me want to strangle kittens. I like myself and don't feel I need to be "cured". However, there have been times that I would do anything to believe that there is some kind of magic pill that could make things better for my son, after 6 years I've learned that only love, hard work, and patience seem to help. Also that being said, I know that diets can do wonders for people. Changing your diet can make life much more manageable. My problem with that OP was that they provided ZERO evidence to back their claims, and got condescending (somewhat understandably). I'm honestly on the fence.
 
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Advertising, offensive language and trolling are against the rules (obviously), so it's up to us to report it and up to the moderators to decide if it is breaking the rules or not and then address it if it is. Many people are against any kind of censorship as being adverse to free speech, but it some cases it is necessary to maintain the integrity and supporting environment of the forum.

However, I agree with those who say that there shouldn't be a blanket ban on all posts discussing the so-called cures or theories. I think it helps us to be aware of such theories and ideas circulating. Often, those who come do so with good but misguided intentions, unaware of how the autism community feels and is going to react. The resulting discussion then becomes an education to them and to others who may later read the particular thread. Ignorance, if not dealt with head on, will just gain potency and spread.
 
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I agree that they were condescending and I said as much in the thread in question, but I think we, as a community, were a bit quick to dismiss and in a demeaning manner.
Like you - the words "cure" and "autism" are a red flag when said together, however it's been my experience that many people who make such claims don't understand the difference between autism & ID or or other co-occurring conditions.
Only by attempting to expand their horizons do we stand a chance of potentially righting a wrong. If they should be hostile in return afterwards then at least we retain "the high ground".
Too many NT parents of autistic kids see autistic adults as the enemy. We are called aggressive, a mob, pitchfork brandishing villagers and much worse. I, for one, do not want this usually friendly and inclusive community to add fuel to that fire.
 
I am not very familiar with these situations but my general opinion is:

There are some people who post these threads with bad intentions but there are also those who don't have bad intentions, so it is a bit extreme to me to ban completely these threads.

The people who don't have bad intentions loose the opportunity to receive valid information from the members of these forum if everything is banned.

Another point is: if you want to defend the Autistic community against these situations you have to know what you're fighting against and for this you need to learn about it and not ignore it.

When these threads appear the mediators can observe and decide to block them at any time for the security of the members if they see there is a strong reason for this and their decision should be respected since it is their duty to do it.

Also maybe there is a way to create a topic or sub topic only for these themes and the members can decide if they want to see it in their screens, like it happens I believe with religion and politics. Am I correct that this possibility exists? Could it be done?

I am sorry for my English. Had difficulty finding the right words.
 
Banning things never works, it drives things underground into the darkness where it festers. The best way to handle things like this is shine a bright light on it, ask intelligent questions and go for full exposure.

If we don’t know what the latest fad or nonsense is we can’t show it up to be what it is. We are all capable of smelling BS I don’t need anyone deciding what I can or cannot read I don’t need a censor I can decide for myself, I’m 50 not a child.
 
Maybe we should discuss some structure of questioning those 'cures'.

For example I always wondered whether ABA makes children think, learn, communicate as NT or does it simply make their autism invisible but unhelped?

These 'cures', do they really remove all effects of brain being wired differently, of having a different developmental path, do they really remove all autism?
Do they undo the effect of social isolation and bullying? What difference do they make exactly?
 

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