Aspies For Freedom

... against Autism Speaks, abuse in institutions and inappropriate medication.

What do you think?

To believe in biomedical intervention as a benefit for autistic children is a personal opinion that some think should be respected in a similar fashion as a religion.

While chelation might have a rumour of being dangerous most of it comes from the death of Tariq Nadama back when they used disodium EDTA instead of DMSA as chelation agents, resulting in a mixup that caused Tariq to be injected with sodium EDTA. (did you see the difference to the two names?)

Many of the biomed community also dislike Autism Speaks, while maybe for other reasons. I don't think biomed parents approve of abuse in institutions either, do you? Many of the stories from people who use biomed also tell of nightmare experiences with mainstream's use of drugs.

I do not say that the scientific debate on biomedical treatments should stop, I just say that we should respect eachother's choices and beliefs that seem to divide us and distract us from maybe more important concerns.

Religion can also be junk science. Like I said on the bottom of my post I still think it is important to continue the scientific debate as it is important to know whether something can have benefit or if it is useless time and money spent.

I still don't see how these other things you mention makes it a bad cause.

The main reason I oppose Autism Speaks is not because if their "curebie" mindset, but because they put loads of funds into stuff that is completily useless for the autistic population, including development of prenetal tests - and this some of the biomed folks agree with is bad.

I believe they would be in support of things that could help families affected by autism - unlike a huge portion of the funds of Autism Speaks. I don't think would run big protests against funding that might help autistic adults getting into work.

Double-blind tests of alternative treatments are maybe something both the biomed and neurodiversity community agree would be a good thing, and maybe also research into how gastrointestinal issues affect some autistics.

The biomed folks to join would ofcourse have to adjust their words aswell. Not making it about war against autism, but rather finding treatments that could be beneficial for some autistics.

At least I am getting attention for my thoughts, so I appriciate your comments andrew_w.

I think you might put more into my words than I intend.

Note that it is mostly the parents and autistics who happen to believe in biomedical treatments for autistics that I'm thinking of.

Sometimes an alliance could seem more possible than other times, sometimes the differences in mentalities are so extreme that it isn't possible.

I believe it could be possible to believe in somekind of mix between biomed and neurodiversity.

I read this story of Lilliput where a divide on how to eat an egg caused a split in the entire empire - isn't it possible to draw an anology here?

I'm kinda sick of this divide.

...

I don't approve of demonizations of autism that is maybe more accepted among parents who believe in biomedical treatments, and probably a whole lot of other stuff that some people choose to associate with people who believe in biomedical treatments.

I think the choice of believing in biomedical treatments should be respected, but not misinformation and lack of representation of important information about issues related to biomedicine.

I'm not suggesting it to you, it was just something I wanted to point out.

Why not?

I'm ofcourse not expecting Generation Rescue to finance social services, it's more that parents who believe in biomedical treatments would have nothing against it.

... against that Autism Speaks donations were being directed towards financing social services, instead of development of prenatal tests.

We should indeed oppose their stand if they wanted Autism Speaks' money to be used on their propoganda.

Earlier I've defended ABA on this forum at the same time as I argued against it on another. Some time after that some people began to stop thinking that all behavioral therapy was child abuse.

I still had to clarify that I still thought that alot of forms of ABA and for some children was better avioded, like the one you see on JRC where they give burn wounds for picking your nose - I wouldn't make it, I pick my nose all the time.

Anyone with an idea of what I'm saying?

Maybe more even, with a change in attitude in both camps.

The big difference is maybe that the neurodiversity community tend to see autism as something neutral, identity and sometimes an asset, while those in favour of biomedical treatments might see it as something inherently bad - which is difficult to accept for us in the neurodiversity community who are somewhat sick of that portrayal.

Still not all of those believing in biomedical treatments view autism this way, they don't necessarily believe that chelation is going to "get rid of the autism problem", but rather that it might have benefit for their children because of all the stories they have heard of improvement in development of speech etc. - which, for the record, is something that has earlier mislead parents to get eg secretin treatment that was later proven to not be beneficial.

Very valid point, but it isn't all parents who seek chelation who care much for how the theories are presented. Maybe some parents who seek chelation doesn't really have anything against autism in itself, and might even dislike the way the theories are presented, but still seek it because they want their children to eg develop language.

I believe no one has proven that chelation can't help autistic children develop language, so we still don't know, that makes it a matter of belief.

Accepting that people believe in chelation doesn't mean that you believe in it aswell, it doesn't make you gay either.

Acting militantly hostile and excluding towards people who believe in biomedical treatments doesn't seem particularly smart aswell.

It's such a big divide in the autism/autistic community. People who have that kind of beliefs go there to get information and meet others in similar situations, while those with this other kind of beliefs go this other place to get information and meet others in similar situations.

The online autistic community seems to be the neurodiversity bible. DAN! seem to be the one to write the biomedical bible with the addition of personal stories from parents who tell of progress after treatment.

I hope this wasn't perceived as a personal attack, I've nothing against you Pakrat.