How Do You Know Who to Listen to?

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http://quackwatch.org/01QuackeryRelated ... quack.html

I am also generally in the some ideas are too stupid/dangerous for equal time camp.[i] I can't see presenting ideas I thought were dangerous on an equal basis with other things.

I can see having all those things discussed on one website, but I could not personally, in good consciousness treat them evenly. I would more likely to point out that those things are scams and dangerous.

I could see having different categories -one for things that have some science behind them, one for things that are experimental but are probably harmless to try and not terribly expensive and then a third category for dangerous and expensive, unproven things.

I think your wording still shows your bias. Plus, sometimes the majority is wrong, and the minority is right, so pointing that out is dubious at best. For example, I think the "majority" still believes that autism is a disease that requires curing. We, who believe otherwise, remain in the minority as of current mainstream thinking.

I think it should say something along the lines of "Chelation is a controversial and much debated treatment for autism. Proponents believe that autism is caused by mercury exposure (to read more about this controversy, read HERE) and that chelation can reverse or even cure autism. Opponents believe that chelation is not scientifically supported and dangerous. For evidence that chelation is an effective treatment for autism, read HERE. For evidence that chelation poses significant risks and is ineffective in the treatment of autism, read HERE. For anecdotal evidence in support of chelation, read HERE. For anecdotal evidence against chelation, read HERE. For parental/professional views related to chelation, read HERE. For autistic views related to chelation, read HERE.

All of the HERE's (if I were to do this) would link to a reading list, which would link to numerous sites. The site lists should be of comparable length, readability, persuasiveness, and credibility. (Granted, I do not find "experts" who say that my child are ill and in need of a cure to be particularly "credible," but there are "credible" people who support that viewpoint...my point is you can't load one side with highly credible professionals and the other with a bunch of ranting bloggers. You have to give equal play. The "best" of the proponents vs the "best" of the opponents).

And to me, each "intro" has to follow the same "formula" to remain unbiased. For-first, against-second. Or, you could chose to go against-first, for-second, but that same formula would have to apply to all topics. Otherwise bias dictates which "side" goes first, and objectivity is lessened.

This website, btw, is on a list of my "master-plan-of-things-that-are-great-ideas-but-will-never-be-accomplished-due-to-executive-dysfunction." I think it would be awesome if someone could actually do it.

We get professional help and have gone through a lot of trial and error.

Our son goes to a private school that specializes in elementary/middle school aged children and the program is considered to be "partial hospitalization." With that comes an attending psychiatrist, mental health worker in the classroom and a one on one aide - along with a teacher who has the empathy and dedication of Mother Theresa.

In addition to that he gets speech therapy (from a wonderful woman who has been working with him for 6 years now; over half of his life) and occupational therapy (which seems to have paid off since he now has the escape skills of Houdini.)

At home we used to have wraparound (aka Behavioral Health Rehabilitative Services) which was comprised of a team of a graduate level Behavioral Services Consultant (BSC) and two undergraduate level Therapeutic Support Specialists (TSS) but we had to suspend it for insurance reasons so that the rest of our family could receive family based therapy. That's OK by me since wraparound didn't really help anyway; it was all ABA based and actually caused more stress in our daily lives. Toward the end, the turnover of both TSS and BSC became so frequent that the revolving door of therapists was actually having a detrimental effect (IMHO.)

We've tried to get respite but found that we were just another struggling family in a long waiting queue and when our turn did come up the quality of the help was not what we were led to believe. Now we're working on getting either a personal care assistant or a habitational aide and are hoping that we get somebody who actually cares about what they do.

Over the years I've read a lot of books, watched a lot of videos, heard from other parents online and heard stories and testimonials from extended family that they'd found something that worked for them but I'm old enough to know that not everything works for everybody. I've learned just enough to get by and am learning what NOT to listen to - both professional and not.

It isn't bias when you have the weight of the scientific community on your side. This one should not have unbiased treatment. It isn't new or experimental; it is disproven and high risk. Some things should not have unbiased treatment.

People who want to go for these types of treatments will have no trouble jumping on them despite the kind of disclaimer I suggested.

And I do consider this different from something like the GFCF diet, which actually led us into variations that are helpful (albeit not cures) for many people. Stomach issues are an increasing issue across all segments of the population, and it feels like it was a few fringe ASD doctors who first ran into that tip of the ice berg. Different phrasing can be used for those types of treatments so that people know that while they aren't widely accepted and there is a lot of skepticism, there also isn't a lot of evidence against them.

Time tends to sort out the fringe ideas that are onto something, v. those that aren't. Chelation has lost in the test of time.

I consider myself a relatively unbiased person, for the most part. I've seen a lot of evidence that what works for me may not work for you and vice-a-versa, so I am happy to advocate for a broad spectrum. But that stops when an idea has been tested over, literally, decades, poses high risk, and can't show any conclusive results. Every anecdote I've read on Chelation easily has an alternative answer obvious to me in the parent's story, but for some reason remains hidden to them. And it is a treatment that has been tried on numerous afflictions over the decades, with only an extremely narrow range of success. Plus, well, kids have DIED. All of that needs to be disclosed off the bat, so it gets read first, before someone is exposed to the sales pitch of the pro group. IMHO, of course.

In terms of websites, I think the thing that I went in search of that Autism Speaks didn't offer was autistic people. That's why I'm here: I can find professionals on my own, I can read books by professionals, I can look up the best practices on the CDC or find parent support groups, but honestly what I care about most is the end result.

Hearing from people whose parents did a good job or did a bad job and having them talk about what happened and the effects it had was the single most important thing to me.

It is amazing to me how little of that is out there.

As for equal time, I'm not sure that all equal time is created...equally. Lots of people believe lots of seriously crazy things; if we try to debunk each one, we're in for a long ride - let's not forget the teachers who think putting autistic kids in a cardboard box is OK, or rebirthing therapies that kill people, or "packing therapy" used in France where they immobilize patients in refrigerated wet sheets.

There is nothing wrong with sticking to the pros and cons of therapies, etc. that have some scientific merit - where scientific merit means not that "scientists" have supported the practice, but that there is measurable evidence that the practice improves targeted symptoms. One of our members linked to an excellent page that does just that: http://www.researchautism.net

I don't think one needs to show the supporting arguments for wearing a tinfoil hat. I know that many otherwise reasonable people believe all kinds of unreasonable things, but that doesn't mean we need to spend time on things that are patently unreasonable.

Thanks for the idea - I have actually considered that - then I got overwhelmed with fear of the comments. I am a non confrontational person and the idea of posting stuff that would create such a stir scares me. However I may get braver as I get older

Not read the whole thread. maybe another time...

DD was diagnosed 2 yrs ago. when she was 9. After she was first diagnosed she went on a remedial treatment that included a child psychologist. There was very regular contact with us too and I clicked with the psychologist whom managed to explain TOM to me.
My interests include neurochemistry, developmental psychology, alternative meds and nutrition. Sort of like that because of my own differentness and have never been a conformist ever since I was little. My interest in them is older than DD herself.
Google is my friend and it's amazing what the right search terms will get you. I read bits and pieces and am very selective of what I take in proper too. Often I will end up on web sites I know have good info and other times I will end where the adverts get so annoying I don't even bother reading the actual site
I'm full of trivia I absolutely have no use for but I remember what seems important at the time.
I go with my gut feeling and usually end up with my own opinion.
A lot of the time I will form an opinion and will then go looking on the internet for others with similar opinions.
I stand my ground in my beliefs, even at DD's school they haven't been able to knock my logic over the last 2 years and have agreed to her staying a year over at my request. She is settled academically now and we are tackling psych-emotional development. I say 'we' because she is a boarder during the week at a boarding school attached to her normal school (which is special ed and where she gets 1:1 for maths and 1hr of self-awareness a week with another psychologist whom seems to be on my wavelenght too

I look at DD as a puzzle that has pieces missing. As DD gets older she now realises that some of the pieces she will only be able to find herself. And that some of those pieces never will be found and she will have to cut them herself to fill the gaps. She has always had an interest in horses and has ridden since she was 5.5. Her other interest is fashion design but she is too young for her first sowing machine. Been there, done that and got the t-shirt after we were given a proper electric toy sewing machine some years back.

We talk a lot.
Like at the moment she has trouble falling asleep and wakes up tired. I explain to DD I would rather we adjust her diet over swallowing a bed time pill. I practice what I preach though and she does think it through. Don't mean to say I would never give her some L-Tryptophane to help her fall asleep but I would much rather she eat more rice at boarding school instead of potatoes. It's one of the few things that contain this essential amino acid that she will eat any time of the day ( She was a very fussy eater and had issues with texture and in the end I resorted to feeding her rice and peas with the logic that enough kids in the world survive on two bowls of rice a day and she ate rice nearly daily before she went boarding and rarely had trouble falling asleep)

Anyway... 2 hours later... got to go do something constructive now