Quackwatch

Discuss autism theories, media stories, and efforts to put ASD on the government agenda here.

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MCA
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Postby MCA » Tue Apr 04, 2006 12:43 pm

Sorry Respect! :oops: Thank you for explaining!

srinath
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Joined: Tue Dec 20, 2005 12:33 pm

It is

Postby srinath » Tue Apr 04, 2006 1:26 pm

Its $20K at the pre K level. I have heard its $45K at the 6th through 8th grades. 100K huh, must be nice to have that kind of spare money. I guess Autism is a great condition to have if your parents were billionaires. The rest of the poor saps are going to have to manage with chelation or other bio based treatments, and we are so poor we cannot even afford real bio medical right. BTW I know of where ABA is free too. Strangely its right around where that same school is located.
GARR christian academy in charlotte is where it is 20K a year. In Union County - 20 miles south east of Garr and in cabarrus county 20 miles north east of Garr, its available if you qualify at the pre school level and by elementary school its definetly ABA if you are still DX. Many counties are following that direction as well. Just not charlotte (mecklenberg county).
Cool.
Srinath.

AJsMOM2
Posts: 243
Joined: Mon Mar 20, 2006 10:56 pm

Postby AJsMOM2 » Tue Apr 04, 2006 1:31 pm

About this comment from Elis Mom (and you are entitled to your opinion...that's what this board is about):
I've read some very enlightening posts on other forums by autistic adults. One of the most damaging things for a child to believe (whether the parents intend it or not) is that they weren't good enough the way they were--that the parents tried literally every treatment available, to no avail.
It was an eye-opener for me--because I felt the same way for a while--that Eli wasn't good enough the way he is. I felt a need to fix his faults, and a lot of them are not fixable. These children will become adults one day, don't spend their childhoods constantly reminding them that they just aren't acceptable the way they are. Try to help them the best you can, but don't try to change them into someone they can never be.


First of all (not directed at you as a person Elis Mom, just a general statement about what you interpreted from the writings from the autistic adult)...

My son really doesn't know that I'm doing anything 'different' for him. I hide supplements in his drink and/or food. Shots are given while asleep. He thinks the HBOT is the fun 'tunnel' he gets to go in. He has no idea that I'm doing anything to "help" him. Of course I want to change him...for the better. I want him to lead a life that is comfortable, happy, and for him to feel less anxious and more successful in his daily tasks. These things you read today about 'autistic adults' complaining....who knows what interventions went on 18+ years ago. Surely, it's nothing like today. I don't think our kids are going to write "mommy hid supplements in my drink..." It's all up to the parent how you approach these different interventions. Maybe the parents of these kids that write these things weren't very discreet? My son gets treated exactly like my NT son...in fact, my NT son is jealous that he doesn't get to go in the HBOT! If anything... the therapy our kids receive (which I am a BIG fan of therapy...don't get me wrong...it did wonders for our son)...the therapy is more "obvious" than the biomed. Biomed you can be more discreet....My son would probably rather go out and play but we still make him go to therapy (speech, pt, whatever) because it's best for him...not because we aren't happy with him. We want him to be the best he can be. It's just like sending an NT child for tutoring after school....same concept. Are we trying to 'change' the NT child? Why is it OK to do that?

RICK - LOVE what you said about the treatment of autistic kids in the mainstream medical community....
Why is it many times a child who to the parent seems in obvious pain is told by mainstream that this is just autism. If an NT child showed the same pain, they are rushed to treatment? Why is it that often a child with a distended belly and screaming each time they go to the bathroom and are chronically constipated that this is told to be autism and no treatment given by mainstream. If your NT child had a distended belly and constipation they are treated instead of being dismissed.


Of course we don't want our kids to feel bad about the choices we are making for them now. Good luck with Eli. Moms do know best so we each choose a different method and lets hope we all come out with positive results in the end! :) We are all in the same boat here no matter which road we take.

Winnie
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Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Tue Apr 04, 2006 1:38 pm

MCA I thought that was a great post (and I hope that, due to my unpopular status on this board, I don't diminish yours by saying so!).

In whatever treatment camp someone falls, it is imperative that if you make a claim, you back it up. Personal testimonies are interesting, but unfortunately, one can find personal testimonies regarding all manner of weirdness on the internet.

It is okay to term a treatment "experimental" or "promising" and proceed with treatment (given that there is some reasonable expectation of benefit, and none of harm). It is not okay to promote, profit from, and claim unproven benefits from treatments that lack supporting evidence. If you are a doctor or any other professional making a claim regarding a treatment, it is your responsibility to provide the evidence. This is not the patient's (or client's) responsibility. Period.

When you drive people with questions and opposing views from a public message board, this will result in an incestuous little anthill of misinformation on the planet of autism, with 30 or so members daily reinforcing each other's opinions and selected articles as fact. Since people with differing views, information, and opinions no longer participate for fear of attack, the remaining members may develop a false sense of their correctness.

Beware the credibility of posters who resort to name-calling, accusations of conspiracy, and dire predictions of failure for your child should you fail to agree with or implement their chosen treatment. They would not need to resort to these weak tactics if they had valid evidence to support their point or to refute yours :wink: .
Winnie
"Make it a powerful memory, the happiest you can remember."

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Fixing

Postby srinath » Tue Apr 04, 2006 1:52 pm

Well I am not hiding much, my son will scream for and eat the suppliments. The MB12 is the only hassle, and even that he takes with minimal whimering, heck he fusses more for brushing his teeth.
Now we aren't driving any one from this board, and especially in the case of winnie we just want to know what her opinion is based on. failing somehting that makes sense, and we have never seen anyhting that points to a personal experience ... we have to conclude she is a pharma/ABA/ST-OT shill. I have often posted why my opinions are the way they are. I would like to see anyhting remotely plausible on any of the anti Bio people. As for Eli's Mom - I feel you on the fixing him aspect of it. but more details - like what you did, when and what were the circumstances and what not - details may help those that are going to do it. Maybe avoid a particular medication or doctor or what not.
Cool.
Srinath.

littlebopeep
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Joined: Wed Feb 15, 2006 5:33 pm

Postby littlebopeep » Tue Apr 04, 2006 2:24 pm

My experience of this board is similar to Eli's Moms's. This place isn't respectful or welcoming to ALL parents of AS kids, just certain ones. Just sayin'....
Fred, 7, NT
Barney, 5, autism

Alex's mom
Posts: 1626
Joined: Sat Mar 18, 2006 2:11 pm

Postby Alex's mom » Tue Apr 04, 2006 2:48 pm

we have to conclude she is a pharma/ABA/ST-OT shill


Srinath-
How one reaches one's conclusions is I suppose a personal matter. However "we" haven't concluded anything, it is "you" who keep bringing up the shill thing :)

BTW- MCa- here's a definition of "shill"
One who poses as a satisfied customer or an enthusiastic gambler to dupe bystanders into participating in a swindle.


I too have noticed a lack of acceptance/tolerance on this board of anything that is even remotely questioning biomed. Usually the gist is the questioning person says something, then what was said is being rephrased so that it sounds ridiculous and personal anecdotes who have no bearing to the case in point of the questioning person are being brought up. Then come the generalities- shills, Divas, how great DAN! is, how bogus mainstream is etc, totally off topic from what the initial spin of the post was, more heated remarks, thread closes :).
I always thought that we need to agree to disagree politely. I don't think it's about who is ultimately right or wrong (as, unlike "respect", I don' t believe there is such thing).

Alex's mom

kathleenjj
Posts: 487
Joined: Tue Apr 19, 2005 1:09 am

Postby kathleenjj » Tue Apr 04, 2006 3:03 pm

Winnie,

you said to "Beware the credibility of posters who resort to name-calling". Then you said

"When you drive people with questions and opposing views from a public message board, this will result in an incestuous little anthill of misinformation on the planet of autism"


That sounds a bit like name calling to me.

You speak often of scientific vs. anecdotal evidence. Do you understand that the 2 are intertwined? If 500 people take aspirin for a headache one week and then those same 500 take Tylenol for a headache the following week and report which worked better, that is partially anecdotal. It is depenedent upon personal input. THere is no tool to measure the shrinking of the headache.

Do you also realize how many medical/scientific decisions throughout history--sometimes for better sometimes for worse_were originally based on anecdotal evidence?

I am trying to make several points. First, not all things are 100% measurable without anecdotal input.
Second, there is not a scientific study availabel to study everything so do you suggest we try nothing that can't or has not been studied?
Third, we should all remember that "scientific" research can also be manipulated. My point? Nothing is foolproof.

I want ALL our children to lead long and healthy lives. I do not disparage those who do not follow biomedical approaches as we do.

Winnie, in my opinion, not fact but opinion, you like to stir up trouble. If that helps anyone's child. Great. When I post here I do so to seek help or try to give it. Referring to poeple on this board who disagree with you as occupying or indeed being (??) an incestuous anthill makes no sense first of all and seems, in my opinion, to be an attack secondly.

Maybe I am wrong.

I hope so.

So maybe we can all agree that the point is the health of the children and that respecting the different ways to achieve that is a good (although not always easy) goal. I would like to suggest we keep words like incestous out, and talking generally about people on this board who "resort" to negative tactics without "valid evidence" (which is false) out.

Winnie, I hope your child is well or doing better all the time. LEts get back to that focus.
Kathleen
Proud Mom

Grandma C
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Joined: Sat Feb 26, 2005 9:04 am

Postby Grandma C » Tue Apr 04, 2006 3:16 pm

JUST MY LITTLE TWO CENTS WORTH. I HAD HOPED WHEN I SUGGESTED DIVIDING THIS SITE INTO SEPARATE "GENERAL" AND "BIOMED" CATEGORIES IT WOULD RESOLVE THIS TYPE OF PROBLEM.

I REALLY WANTED TO SEE PEOPLE GET HELP ON THE GENERAL SIDE FOR ISSUES NOT PERTAINING TO BIO-MEDS AND WAS PLEASED WHEN THE WEBMASTER THOUGHT IT WAS A GOOD IDEA AND FOLLOWED THROUGH WITH IT. SOMEHOW, THE BIO-MED, DAN, ETC. SNUCK BACK TO THE WRONG SIDE.

I THINK THESE HARD FEELINGS COULD BE AVOIDED IF CATEGORIES ARE FOLLOWED. EVERYONE ON THIS SITE LOVES A CHILD ON THE AUTISM SPECTRUM AND THERE SHOULD BE ROOM & RESPECT FOR EVERYONE'S OPINIONS.

THERE ARE SO MANY PATHS TO FOLLOW - GOD HELP US ALL AS WE STRUGGLE TO FIND THE RIGHT ONE!

LOVE,

GRANDMA C

Winnie
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Postby Winnie » Tue Apr 04, 2006 3:53 pm

Do you also realize how many medical/scientific decisions throughout history--sometimes for better sometimes for worse_were originally based on anecdotal evidence?


Of course some medical advances have roots in anedotes, but until science validates the anecdotes, the information continues to be "promising" or "experimental," -- and there is nothing wrong with that -- as I stated in my post -- the part in bold print (did you read it?).

You speak often of scientific vs. anecdotal evidence. Do you understand that the 2 are intertwined? If 500 people take aspirin for a headache one week and then those same 500 take Tylenol for a headache the following week and report which worked better, that is partially anecdotal. It is depenedent upon personal input. THere is no tool to measure the shrinking of the headache.


The scientific method (good research design) controls the variable of "personal input" on part of the researcher and patient via the "tool" of double-blind studies (didn't you say you had a background in statistics? Did this pertain to statistical tests of reliability in research design?)

Winnie, in my opinion, not fact but opinion, you like to stir up trouble.


Umm...I didn't start this thread and my first post on the topic is on the third page.

My anthill analogy was a general observation, not an attack singling out a poster. A personal attack looks a lot more like this (by you toward me on this thread):

http://www.autismweb.com/forum/viewtopi ... ght=#21850

Winnie

I am disgusted by your lack of respect for people who have done NOTHING but offer help. Dr Jim Neubrander and Rick Neubrander specifically. And you are insulting some of these doctors, specifically Dr. Buttar by mocking one of his credentials and Dr. N by your statement.


Interestingly, the information I posted was correct and easily verified, as was later demonstrated in the thread. You attacked before doing your homework (which demonstrates some the the other poster's points on this thread). Please reread the entire thread on the link above and note the instances of name-calling and lack of respect.

And btw, you said in that thread that you would no longer respond to my posts. That's fine by me....really.

Peace :)
Last edited by Winnie on Tue Apr 04, 2006 4:39 pm, edited 2 times in total.
Winnie
"Make it a powerful memory, the happiest you can remember."

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

I do

Postby srinath » Tue Apr 04, 2006 3:57 pm

Alex's mom wrote:
we have to conclude she is a pharma/ABA/ST-OT shill


Srinath-
How one reaches one's conclusions is I suppose a personal matter. However "we" haven't concluded anything, it is "you" who keep bringing up the shill thing :)

<snip>

Alex's mom



I am not saying it is not personal. I am just asking when someone pushes people away from biomed, I'd like to know why. Just like I would like to know why they are pushing for biomed. I have posted threads where I have said what I hope to get by being on this board and what we have done so far and how it has worked so far. Opinion backed by personal experience = anecdotal evidence. Opinion not backed by personal experience = dishonesty. Which is why I keep bringing up the shill word.
Cool.
Srinath.

webmaster
Site Admin
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Postby webmaster » Tue Apr 04, 2006 4:38 pm

Grandma C wrote:JUST MY LITTLE TWO CENTS WORTH. I HAD HOPED WHEN I SUGGESTED DIVIDING THIS SITE INTO SEPARATE "GENERAL" AND "BIOMED" CATEGORIES IT WOULD RESOLVE THIS TYPE OF PROBLEM.

I REALLY WANTED TO SEE PEOPLE GET HELP ON THE GENERAL SIDE FOR ISSUES NOT PERTAINING TO BIO-MEDS AND WAS PLEASED WHEN THE WEBMASTER THOUGHT IT WAS A GOOD IDEA AND FOLLOWED THROUGH WITH IT. SOMEHOW, THE BIO-MED, DAN, ETC. SNUCK BACK TO THE WRONG SIDE.

I THINK THESE HARD FEELINGS COULD BE AVOIDED IF CATEGORIES ARE FOLLOWED. EVERYONE ON THIS SITE LOVES A CHILD ON THE AUTISM SPECTRUM AND THERE SHOULD BE ROOM & RESPECT FOR EVERYONE'S OPINIONS.

THERE ARE SO MANY PATHS TO FOLLOW - GOD HELP US ALL AS WE STRUGGLE TO FIND THE RIGHT ONE!

LOVE,

GRANDMA C


Thanks, Grandma C, and let me add that we did divide the board into a support/advice/education category and a biomedical category last year. We did this at the request of people who were not interested in biomedical and who didn't want to read biomedical posts. I would like to request that in the future, if you have a biomedical post (EITHER FOR OR AGAINST), that you please post it in the biomedical category.
Webmaster, AutismWeb.com
Report technical problems to me by PM or email

Alex's mom
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Joined: Sat Mar 18, 2006 2:11 pm

Postby Alex's mom » Tue Apr 04, 2006 8:51 pm

Opinion not backed by personal experience = dishonesty. Which is why I keep bringing up the shill word


Well....no, not necessarily. I don't have to have a personal experience with sky diving to know that it could potentially be dangerous. I don't have to chelate my son (which by the way I did) to find out about the side effects of DMSA. I don't have to give my son Leupron to have an understanding of puberty etc. I would propose that some of the people asking questions have done their "research" as well, just happened to opt out of certain treatments.
I trust that a parent always knows what's best for their child.
Alex's mom

kathleenjj
Posts: 487
Joined: Tue Apr 19, 2005 1:09 am

Postby kathleenjj » Tue Apr 04, 2006 10:14 pm

Winnie

Thanks for reminding me of some of your past posts.

God Bless us all

:)

Grandma C--please keep us posted on Evan! I am so happy he is doing better
Kathleen

Proud Mom

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Tue Apr 04, 2006 10:36 pm

Kathleen,

Hey -- you are very welcome. I'm still looking for those thread "statistics" on name-calling though. :wink:

Srinath,

You posted:

Opinion not backed by personal experience = dishonesty


I admit to having difficulty following your logic...as you would therefore be reasoning that the Geiers are suffering from elevated levels of testosterone. whoa :shock:
Winnie
"Make it a powerful memory, the happiest you can remember."

LM
Posts: 848
Joined: Thu Jan 26, 2006 10:54 pm

Postby LM » Tue Apr 04, 2006 10:47 pm

Elis Mom,

I'm sorry you won't be posting here anymore. You conveyed what a small minority of us parents are now coming to realize. I think many parents (myself included) of newly diagnosed children could greatly benefit from your experience.

I'm a mom who tried "unproven" biomed approaches and saw no substantial gains with my son, in fact, going the biomed route caused problems that were never there to begin with. I have on the other hand seen significant gains with behavioral therapy. But my son's gains aren't valid here because I'm not touting the benefits of biomedical interventions.

Whomever posted about Winnie not having anything good to say about Dr. Buttar: Do you have a personal experience w/Buttar? Because I do. And based on that horrible experience, you can count me in as not having anything good to say about him.

LM

kathleenjj
Posts: 487
Joined: Tue Apr 19, 2005 1:09 am

Postby kathleenjj » Tue Apr 04, 2006 10:55 pm

LM

I for one value the input of parents on interventions. Including yours. ABA is helping my son as is speech and OT.

The Buttar issue was from another thread months ago that was reposted here by another poster. I am sorry you had a bad biomed experience. Mine has been great. How old is your child? Are you doing ABA or speech?
Kathleen

Proud Mom

LM
Posts: 848
Joined: Thu Jan 26, 2006 10:54 pm

Postby LM » Tue Apr 04, 2006 11:41 pm

Hi kathleenjj

I hadn't realized that was an older post :oops:

We've tried a number of biomed therapies but my son seems to be a "non-responder." I'm glad to hear things are going well for your child - is there anything specific you feel is helping most? Admittedly I don't miss spending 45 minutes to prepare a sippy cup :D We still do a few vitamin/mineral supplements and he's not on dairy milk (more of a dietary hold-out from our Berkeley days than autism related). Although we're now thinking of caving to the almighty cow.

My son is 3.2yrs . We do a number of things - speech once a week, 32hrs of an eclectic behavioral therapy, preschool w/typically developing peers and afterhours therapy from an intrusive younger brother :)

Kristal
Posts: 52
Joined: Fri Mar 25, 2005 3:29 pm

Postby Kristal » Wed Apr 05, 2006 1:22 am

Ok, here is a bit of my high horse.

This is one of the ONLY boards that biomed people can feel safe. ANY of the other boards that I have been on (besides strict biomed boards) I have been slammed and given hate emails (that is oh so fun) because I shared my passionate opinion about biomed treatment.

That is one reason why biomed people are so loud...is that we feel passionately about what we believe..and we get ticked off when people tell us there is no proof...WHEN WE LIVE WITH THE PROOF. And THIS boards is a safe place for us to vent and share with people who are passionate about it too.

So in my honest opinion...I don't really care if someone is uncomfortable about the one sidedness of this board....if you don't like it...there are plenty of other boards that go out of their way to bash anyone that speaks biomedical. I have had my fair share of bashing on those other boards, because I made the mistake to share about something I was excited about.

My second high horse:

As long as what you are doing is monitored and safe, why would it be endangering your child? It just doesn't make any sense to me. And wanting the best for your child isn't not accepting them. (That kind of comment has always ticked me off.) Because I am wanting the HIGHEST POTENTIAL for my child...I am not accepting him?? That is a big pile of cow patties. I will accept who he is, but still fight for him. There is a difference.


I think what fires me up the most is people who say it is unproven haven't even tried it. People who say that they tried and it didn't work...well...at least they tried..I don't feel annoyed about them. I think people are cheating their kids out of something that might really benifit them...and if they haven't tried it...how in the heck do they know, or can they say it doesn't work.

If someone gets attacked because they say biomed is unproven; it isn't because we aren't open to differences of opinions. It is because it is untrue information, and we defend what we know is true...BECAUSE OF OUR PERSONAL PROOF. And this whole PC (oh let everyone believe what they want) I think is a cow patty too. In some instances in life, we have to fight for truth. I think our world worries so much about offending others that we forget to fight for what we feel is true and right. And that is why biomed people speak so strongly about it....even if it drives others away.

And there IS medical proof out there.

I would hate to be the mother who ignored even trying, and then in a few years the proof (that is already out there) finally becomes mainstream. It is coming out even in the last couple of months. And I would have to look at my child and wonder "what if"

I know in my heart I did everything I could to fight for him. Even if he stays autistic, at least I would know I did all I could...and I would love him the same.

I have a lot more horses in my pocket..but I'll let them be for now.

--Kristal

respect
Posts: 2402
Joined: Mon Sep 19, 2005 3:52 am

Postby respect » Wed Apr 05, 2006 8:09 am

My son has made fabulous gains through biomedical intervention and ABA. If i believed what his paed or GP said, i would be sitting around moping and hoping for the best, filling his teeth with mercury fillings and giving him ritalin or prozac. I would still be giving him milk and sugar and aspartame and food coloring and wondering why he was so hyper.

For people new to this board, finding what works for your autistic child is a journey, and not one that can be made from reading opinions of just a few people. You actually have to get down to it and try new things out for yourself.

The thread was originally about Quackwatch. Quackwatch is a quack! Its funded by the medical establishment which has taken issue with those who "self help". The medical establishment is under seige from people like us who no longer trust the "professional", whatever that is.

Nobody knows our body or our kids bodies like we do! Nobody. And after a year of researching biomed, i can hold my own against the paeds and doctors who try to knock biomed down with their ridiculous uninformed arguments. They dont really care whether my kid improves or not, their arguments are based on their own agenda of maintaining the "mystery" of autism and keeping the "understanding" of autism out of our reach.

Self help is being bashed the world over. Drug companies lose out when we take vitamin C rather than buy their crap cough syrups and pills. Every time you eat some garlic or dont smoke, the medical establishment loses out on your potential "illness" and its money making potential.


the medical establishment is not controlled by your local GP, its much bigger than that. When you come up against it, face on, like we are, in trying to help our kids, thats when you feel their wrath. It filters from the top down, from the drug companies to the local GP who unwittingly puts you off self help, cause s/he has been previously brainwashed. When the drug pusher reps come into the doctors office and cant get the GP to peddle the new "pill" to you, the medical establishment suffers.

Get it?


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