Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Mimi, In reading the Discover Magazine article, I feel compelled to respond. I have surfed net autism forums and websites for five years, frequented more online groups than you can imagine during this time, advocated for autistic children, run a forum for parents with children with autsism, and have participated in many more such forums. I have an on-again, off-again communication going with Donna , and am more or less part of a coalition of website administrators for over 40 forums on autism. Also, I did professional work with autism non-profits at my prior place of employment. Between the information I have gathered from my own researches and participation, and the information that other website administrators have gathered, and the information I have gleaned from Donna , and the information I have gathered from the autism non- profits the only scrap of truth in this article you have posted is the following: " As notes, one mother killed herself after seeking every possible treatment for her autistic daughter to no avail, causing a furor among parents with autistic children. " I hate the term `full recovery,' " adds, " because of this false hope. Some children do lose the diagnosis, but that's rare. I don't think that should be out there as a goal. We need to accept [the kids) and love them for who they are-because they are lovable. They're quirky. " According to people who actually treat autistics, most people that are correctly diagnosed with autism are not affected one iota by any treatment or cure. Only those who are misdiagnosed or who have co- morbidities are affected by remedies like those presented in your article. Trying to make a business out of quack cures like this only hurts parents financially, gives them false hope and makes the autistics they gave birth to suffer. It also funds the quack profiteers while keeping money from educational, medical, and vocational programs that are really needed to help autistics survive in the wrold. The reason the autistic charities had to come to my former firm to ask them to help them get money is because people are resorting to coffee enemas and detoxification therapies to " treat " or " cure " autism and are not donating to organizations that actually help autistics learn, or help them get jobs. Too many people are sinking money into false hopes like the ones presented in your article like gamblers into a slot machine. It really really REALLY bugs me that the virtually the entire article was given over to such utter crap when all you need to do is go into any web forum on the net to see that autistics who are truly properly diagnosed are fed up with such crud, and so are the parents, who have already tried most of this stuff and failed - BECAUSE IT DOESN'T WORK!!! Tom Administrator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Sorry for the rant, Mimi. It's just that I have heard from, heard about, and seen too many people hurt -SERIOUSLY hurt, both medically and emotionally- by these sorts of " remedies " and it bugs me that people lend so much credence to these things, or put their faith in stuff like this. I have yet to hear of a success story from anyone who has used any of these methods -except as they pertained to co-morbidities or false diagnosises- and articles like these make it seem like: A) These treatments are legitimate. They work. C) They work the best out of any form of treatment. D) They have an excellent success rate. When in fact the opposite is true from what I know. Again, sorry. But when an article like this comes out, I feel compelled to immediately combat it to prevent people from taking such flap as truth. Tom Administrator Too many people are sinking money into false hopes like the ones presented in your article like gamblers into a slot machine. It really really REALLY bugs me that the virtually the entire article was given over to such utter crap when all you need to do is go into any web forum on the net to see that autistics who are truly properly diagnosed are fed up with such crud, and so are the parents, who have already tried most of this stuff and failed - BECAUSE IT DOESN'T WORK!!! Tom Administrator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 environmental1st2003 wrote: > Sorry for the rant, Mimi. > > It's just that I have heard from, heard about, and seen too many people > hurt -SERIOUSLY hurt, both medically and emotionally- by these sorts > of " remedies " and it bugs me that people lend so much credence to these > things, or put their faith in stuff like this. I have yet to hear of a > success story from anyone who has used any of these methods -except as > they pertained to co-morbidities or false diagnosises- and articles > like these make it seem like: > > A) These treatments are legitimate. > They work. > C) They work the best out of any form of treatment. > D) They have an excellent success rate. > > When in fact the opposite is true from what I know. > > Again, sorry. But when an article like this comes out, I feel compelled > to immediately combat it to prevent people from taking such flap as > truth. > > Tom > Administrator I'm reminded of something a friend of mine wrote, that's traveled around the CFS/FMS/ME world for nearly ten years now. Quoting from it: " If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW. " Like my friend, I am TIRED of people constantly suggesting this " cure " or that " cure " when not one of them is real, and every one of them sucks time, energy, and money that we just CAN NOT SPARE. -- " Students throughout the totalitarian world risk life and limb for freedom of expression, many American college students are demanding that big brother restrict their freedom of speech on campus. This demand for enhanced censorship is not emanating only from the usual corner – the know-nothing fundamentalist right – it is coming from the radical, and increasingly not-so-radical left as well. " - Alan Dershowitz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 There's a very interesting article in the May issue of Discover Magazine.Eventually these articles will be available online . . . but not yet.One article discusses the environmental effect of chemicals on children . . . "Interview, Philip Langdrigan, An environmental crusader takes on special interests and investigates the possible causes of autism, asthma, and attention deficit disorder."If you can, get this magazine . . . You'll find it in the magazine section of most book stores. . . Be sure it's the May issue!When the article is online, I'll post the link.Rogene Quote Link to comment Share on other sites More sharing options...
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