Myths: Autism, Asperger's, ADHD, and ADD (long) - Page 3 - Mothering Forums

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#61 of 76 Old 04-04-2006, 07:09 PM
 
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Originally Posted by krissi
Again, as a person who is pursuing biomed treatments for my child, understand that I am absolutely not trying to change the way her mind works. In fact it regularly annoys me when the preschool teachers and other educational personnel say they want to expose her to "typically developing children" as behavioral models. My daughter is far better behaved than many of the "typical" children I have seen, and I do not want her to ever feel like she has to be someone other than she is.
Ok. With all due respect, (and really, I mean that fully)... I don't think this is quite what your child's teachers were getting at. Children with ASDs should be regularly around "typically developing" children, for a number of reasons.

It is not that anyone desires to change the ASD child and change the child's personality or brain structure. Rather, a combination of relationship-based therapy and being aound typically developing peers can help ASD children INTERNALLY MOTIVATE themselves to form relationships.

Nothing rubs me the wrong way more than formal social skills training. ASD kids can learn how to act out any part. They can learn what to do in certain situations, how to respond to certain cues, etc. But what does that teach them?

I do RDI therapy (www.rdiconnect.com) with my ASD students and use intensive peer modeling. Our goal is to create real, lasting, DESIRED relationships. We find so often that the ASD kids are happy playing on their own or interacting in their own way, but that they are much happier when we help them (over years) actually want to be in 2-way relationships. Their home life improves drastically, as well.

I do agree that the ASD kids often have better behavior than the typical kids-- that's true for some b/c they are at a lower social developmental level. Sometimes we make a HUGE breakthrough, and see it get worse before it gets better. For example, if a child used to never be bothered by mild teasing from a parent or other child (the child just didn't really *get* it) and now the child is starting to understand the nuances of behavior more... the child might get angry the next time s/he is playfully teased. this might be a GOOD thing! It's only one small step-- of course after that we teach the child how to tell someone when something is bothering you (instead of just pure reacting).. and eventually we might get to the point where the child recognizes the playful aspect of it and playfully teases back.

I can think of one child in particular. Pretend her name is Hannah.

Dad picks her up from school.

stage 1
"Hey Hannah Banana!"
child stares at dad.

stage 2
"Hey Hannah Banana!"
"NOOOOOOOO! Don't call me that!" and child furiously pushes into dad.

stage 3
"Hey Hannah Banana!"
"Hey daddy patty!"

it might take years to work through these stages. by the time we get to the last stage the child is genuinely FEELING happiness from the playful teasing and can repsond back in a playful way. that's a huge social step that couldn't have happened necessarily without some undesireable behaviors in the meantime.

I don't think that example is how every child works, obviously. Just one way. I do think there are MANY things ASD kids can learn from typical kids, and just as many things typical kids can learn from them. I LOVE inclusion with extra ASD supports.
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#62 of 76 Old 04-04-2006, 08:08 PM
 
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Oh it was what they were getting at in this case. It's too long of a story to bother with posting here. I see what you're saying and am not against her being exposed to neurotypical children at all. Actually DD is starting to show interest in other children and the new class I'm switching her to has supported inclusion with typical kids. I think it will help boost her communication skills and she'll have fun, which are my primary goals for her school experience right now.

My point earlier was just that I do not want to force her to be something she's not. I tend to be an introvert myself and prefer to have a few very close friends, but I was pressured throughout my school years to be more social when it just wasn't who I was. I resented it and don't want to do the same to DD if she turns out to be the same way. I do want to get her the communication skills to make friends when she wants to and to expose her to social opportunities, but I don't want to make her feel like she has to play a role in order to please other people. It's a delicate balance. RDI may be something for us to look into at some point if it addresses this, but right now she is starting to be interested in other kids so we're going to see what happens with that after she moves to the new class.

Back to the subject of chelation though...

It does frustrate me when many parents focus exclusively on vaxes as the cause of autism. My DD has a high uranium level in her hair test. If accurate, which we're still looking into, she certainly didn't get uranium poisoned from getting vaxes for 6 months (we stopped after the 6 month round). She has some evidence of problems excreting mercury too, given that her blood and hair levels are abnormally low. But her only possible exposure to thimerosal was through the prenatal Rhogam, and that's just possible and not confirmed to have contained mercury. I am tending to think that she's getting these from environmental sources but just not processing them correctly due to her metabolic problems.

I am unsure about chelation because what I really want is to repair whatever mechanisms caused her to have trouble clearing metals in the first place. We may chelate in the attempt to improve her overall health, but if we do, we'd use a well-researched protocol like DMSA and ALA. And we certainly wouldn't stop her educational and diet and behavioral therapy in order to do chelation, so I don't see how we'd be hurting anything even if we didn't get major gains.

I understand why there are so many chelation skeptics out there though. There are about a million different protocols and numerous chelating agents of varying efficacy and safety and the practitioners using it aren't well regulated. I think it's important to be sure that a child is actually metal poisoned, for starters, by running the right lab tests. And to monitor the child for safety reasons. For example, DD's gut is currently in such a state that starting to pull metals could compromise her health. So it may be months before we can even consider chelation. I've heard of doctors who jump into chelating right away without doing any tests beforehand, which scares me. But that just means it's important to do your research. And of course chelation isn't right for everyone. But for those kids that do have confirmed metal poisoning, like my DD and like bluesky74's kids, I don't see why parents shouldn't try to get rid of the metals.
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#63 of 76 Old 04-05-2006, 05:02 PM - Thread Starter
 
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This metal issue reminds me of the chicken and the egg theory - were the kids born w/ an inherant or predisposed comprimised ability to metabolize and excreet metals, or was there some type of insult that occured to impair metal metabolism. I have read that usually the more severe ASD a child has, the more likely it was that he/she had a greater number of ear infections and therefore more rounds of antibiotics. One researcher said in one book I am reading that antibiotics can severely inhibit the body's abilitiy to excreet metals, thereby exacerbating their toxicity. Add into that the damage to the gut when yeast is able to grow out of control due to the die off of clostridia (healthy bacteria in gut), and candida (yeast) literally begins to eat away and burrow into intestinal walls, causing Leaky Gut. Then you have myriad potentially harmful, not properly digetsted materials making it into the bloodstream. Its such a complex string of possible events, and testing for all of them can be expensive, and difficult to interpret.

I do think that we are moving towards a biomedical protocal for ASD - one day it will be routine to have certain tests run to look for particular markers that are common in ASD kids, and doctors will be able to treat from there, according to the individual needs of that child. Our ID twins are identical in DNA yet they are not experiencing identical deficiencies, although most of them are the same. Its interesting to see their abnormalities in their testing levels concur w/ the severity of each of their ASD traits...

Has anyone else following this thread had bio testing done?
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#64 of 76 Old 04-05-2006, 05:53 PM
 
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Its such a complex string of possible events, and testing for all of them can be expensive, and difficult to interpret.
Ain't that the truth? It's such a complex problem and so many sources paint it as if biomed treatment for autism was only about thimerosal and chelation. It isn't. DD's autism is thankfully not as severe as some other kids I've seen and all her therapists say she'd probably be able to "mainstream" by kindergarten at least with an aide. She's only been on antibiotics twice, but her gut is an absolute mess. She has 52 food allergies (meaning almost certain Leaky Gut Syndrome), markers of clostridia and severe yeast overgrowth, elevated liver enzymes, low amino acids, low levels of all essential minerals, abnormal mitochondrial function...the lab results pretty much suggest a potential biological basis for all her ASD symptoms. None of this was outwardly obvious before we did the testing, other than that she had ASD.

The question I'm still not sure about is why. Her exposure to metals shouldn't be any higher than the average child. I've been big on eating organic for years. I do not eat fish and never have had any dental work done beyond routine cleanings. Her only possible thimerosal exposure was if the prenatal Rhogam had mercury. Yes DD got 6 months of the scheduled vaxes but plenty of kids are fully vaxed and never develop these issues.

I do have one theory that me being on high doses of aldomet (which stresses the liver) at the time of delivery, and then her getting the HepB shot at birth despite being a jaundiced preemie, may have impaired her liver's detox abilities. But DS also has some early signs of food allergies, GI issues, and maybe mild vestibular processing issues and has never had a vax. Unless I myself am metal poisoned and they both got it from me in utero, I tend to think we maybe have a genetic predisposition problem. I wish this would be more thoroughly studied, because if there were a way to pinpoint it and identify who had these types issues, parents could be warned to minimize exposure to toxins, etc. from the start the same way that birth screening can warn for disorders like PKU.
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#65 of 76 Old 04-05-2006, 07:14 PM
 
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Originally Posted by krissi
Oh it was what they were getting at in this case. It's too long of a story to bother with posting here. I see what you're saying and am not against her being exposed to neurotypical children at all. Actually DD is starting to show interest in other children and the new class I'm switching her to has supported inclusion with typical kids. I think it will help boost her communication skills and she'll have fun, which are my primary goals for her school experience right now.

My point earlier was just that I do not want to force her to be something she's not. I tend to be an introvert myself and prefer to have a few very close friends, but I was pressured throughout my school years to be more social when it just wasn't who I was. I resented it and don't want to do the same to DD if she turns out to be the same way. I do want to get her the communication skills to make friends when she wants to and to expose her to social opportunities, but I don't want to make her feel like she has to play a role in order to please other people. It's a delicate balance. RDI may be something for us to look into at some point if it addresses this, but right now she is starting to be interested in other kids so we're going to see what happens with that after she moves to the new class.
I see what you're saying and I think our opinions are a lot closer than it seems!

I don't think a child should be pushed into more social interactions than the child wants. that is a BIG part of what I do-- I am working towards the goal of the child wanting to form relationships-- the exact opposite.

RDI typically starts with the parent-child relationship. It begins with whatever stage the child is at socially, and uses games and role plays (the parent provides about 99% of the therapy) to foster and even deeper relationship, one that doesn't depend on the parent compensating for the child. a more equal relationship. they don't move out into other relationships until THEY are ready. That's the awesome part. they are never ever pushed beyond where they WANT to be. RDI kinda shows them how much fun relationships can be-- and helps them fill in the clues about what motivates other people socially.
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#66 of 76 Old 04-09-2006, 08:40 PM
 
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I believe that genetics definately plays a role. But when I hear "My child was developing normally until their (usually it's 18 months) shot, and the next week or even the next day, they stopped talking, developed severe stomach pains, etc." I really have to wonder. I suspect there's a vaccine connection when the child is not just autistic, but has all sorts of health issues-which is why I totally understand why some parents try chelation and supplements. Their children are very sick.

Quote:
Chelation has its risks, and there has been at least one death related to that particular treatment.
You'd think that with all the deaths due to ADHD drugs, they wouldn't be recommending Ritalin for children with autism, but they are.
http://specialchildren.about.com/b/a/218110.htm

Quote:
A report by the FDA released in February 2006, said that
between 1999 and 2003, there were 25 deaths in persons using ADHD
drugs, including the deaths of 19 children. The FDA also reported
receiving more than 50 cases of cardiovascular problems, including
stoke, heart attack, hypertension, palpitations and arrhythmia.
Because only between 1 and 10% of adverse events are ever
reported to the FDA, the numbers above represent an extreme
understatement of actual cases of harm, critics point out.
According to the Drug Abuse Warning Network, there were only
271 Ritalin-related emergency room visits in 1990, but there were
1,478 Ritalin-related emergency visits recorded in 2001.
In 1999, the National Institute of Drug Abuse, found some 165
Ritalin-related poison calls in Detroit and 419 cases in Texas. Of
the nearly 600 calls, only 114 cases involved intentional misuse or
abuse.
http://www.sierratimes.com/06/04/08/75_8_36_9_51180.htm
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#67 of 76 Old 04-10-2006, 03:13 AM
 
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[QUOTE=dingogirl]You'd think that with all the deaths due to ADHD drugs, they wouldn't be recommending Ritalin for children with autism, but they are.
http://specialchildren.about.com/b/a/218110.htm

I don't agree with medicating ASD kids unless it is a last resort i.e. extreme self-injurious behavior.
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#68 of 76 Old 04-10-2006, 04:18 AM
 
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Very interesting thread. I am friends with two different families with grown children with Asberger's. Thanks for all the interersting viewpoints and references.

I am a 40 year old unschooling, belly dancing, artist-mama of one almost 8 year old. I just had brain surgery and blogging.jpg about it a bit because it's just so surreal.
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#69 of 76 Old 04-10-2006, 05:02 AM
 
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I don't agree with medicating ASD kids unless it is a last resort i.e. extreme self-injurious behavior.
I just don't understand why the medical profession demonizes chelation and vitamin therapy, yet have no problems prescribing meds which have killed far more children than chelation has.
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#70 of 76 Old 04-12-2006, 11:56 AM
 
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Autism spectrum disorders run in our family. I have a twin brother with Aspergers. I am neurotypical. We live in Canada.

I did not have any flu or other vaccines in my first pregnancy. I do have amalgam dental fillings. I went into pregnancy in great physical shape, eschewed canned fish, ate mainly organic foods, and purposely have not vaccinated my dd. Nevertheless, she seemed "different" from the very beginning, and has turned out to have PDD-NOS (SPLD type). My son, born under the same conditions in the same environment, does not.

I don't have the answers. What I do make sure of is that I try to research all sides of the matter and keep an open mind. I find a great deal of sense in the literature on both major sides, a great deal of contradiction and a great deal of omission on both as well.

Parents investigating the heavy metal / thimerosol / mercury poisoning / chelation treatment side of autism and wanting a more thorough body of information from which to draw their own conclusions might also wish to read:

Barrett S. Commercial hair analysis: A cardinal sign of quackery. Quackwatch, Jan 5, 2001
http://www.quackwatch.org/01Quackery...pics/hair.html

Frumkin H. Diagnostic chelation challenge with DMSA: A biomarker of long-term mercury exposure? Environmental Health Perspectives 109:167-171, 2001
http://www.ehponline.org/members/200...mkin-full.html

and the following site:
http://www.autism-watch.org/
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#71 of 76 Old 04-12-2006, 12:52 PM
 
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Barrett S. Commercial hair analysis: A cardinal sign of quackery. Quackwatch, Jan 5, 2001
http://www.quackwatch.org/01Quackery...pics/hair.html
"Dr" Stephen Barrett and his Quackwatch website in not a reputable source of information. Please see here:

http://quackpotwatch.org/

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#72 of 76 Old 04-12-2006, 01:20 PM
 
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Originally Posted by uccomama
"Dr" Stephen Barrett and his Quackwatch website in not a reputable source of information. Please see here:

http://quackpotwatch.org/
I'm unable to get this link to work. Could you check and see if it's the right address?

What about Dr. James Laidlaw, who is responsible for the Autism Watch site? How's his reputation?

Could you maybe address what these gentlemen are saying? Just a thought.
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#73 of 76 Old 04-12-2006, 01:40 PM
 
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Originally Posted by underthebluerug
I'm unable to get this link to work. Could you check and see if it's the right address?

What about Dr. James Laidlaw, who is responsible for the Autism Watch site? How's his reputation?

Could you maybe address what these gentlemen are saying? Just a thought.
The link I supplied you with works for me.

Here is some background information on Dr Stephen Barrett for the link above:

Quote:
In a Canadian lawsuit (see below) Barrett admitted to the following:

"The sole purpose of the activities of Barrett & Baratz are to discredit and cause damage and harm to health care practitioners, businesses that make alternative health therapies or products available, and advocates of non-allopathic therapies and health freedom."

Stephen Barrett testifies for money. He claims he's an "expert" in virtually everything. Those "expert witness" fees seem to be a significant part of Barrett's existence.

In a California Court case, former Barrett peer, and fellow Board Member of the National Council Against Health Fraud (NCAHF), William Jarvis PhD, testified, under oath, that Stephen Barrett and Robert Baratz conspired to use the NCAHF, without Board permission, as a Plaintiff in over 40 cases in California, where Barrett and Baratz were to testify as "expert witnesses," and get expert witness fees. The NCAHF Board was never consulted.

However, sometimes their plans fail.

One of those cases caused the NCAHF to be saddled with over $100,000 in legal fees awarded their victim - and the NCAHF doesn't have the money to pay that debt. In fact, the NCAHF is SO DESPERATE for funds it is being run out of a cardboard box in the back room of Robert Baratz's Braintree, Massachusetts hair removal and ear piercing salon.

Those type of cases Barrett involved the NCAHF in were considered so heinous that the people of California just passed an initiative (Proposition #64) banning this kind of lawsuit for all time.

Barrett's claim to be a Consumer Advocate is an insult to American consumers.
and:

Quote:
The Internet needs health information it can trust. Stephen Barrett doesn't provide it...

Barrett is one of those people whose ambitions and opinions of himself far exceeds his abilities. Without ANY qualifications he has set himself up as an expert in just about everything having to do with health care - and more.

And this from a man who is a professional failure.

Records show that Barrett never achieved any success in the medical profession. His claim to being a "retired Psychiatrist" is laughable. He is, in fact, a "failed Psychiatrist," and a "failed MD."

The Psychiatric profession rejected Barrett years ago, for Barrett could NOT pass the examinations necessary to become "Board Certified." Which, is no doubt why Barrett was, throughout his career, relegated to lower level "part time" positions.

Barrett, we know, was forced to give up his medical license in Pennsylvania in 1993 when his "part-time" employment at the State Mental Hospital was terminated, and he had so few (nine) private patients during his last five years of practice, that he couldn't afford the Malpractice Insurance premiums Pennsylvania requires.

In a job market in the United States, where there is a "doctor shortage," Stephen Barrett, after his termination by the State mental Hospital, couldn't find employment. He was in his mid-50s at the time. He should have been at the top of his craft - yet, apparently, he couldn't find work.

It is obvious, that, after one humiliation after another, in 1993 Barrett simply gave up his medical aspirations, turned in his MD license, and retreated, in bitterness and frustration, to his basement.

It was in that basement, where Barrett took up "quackbusting" - which, in reality, means that Barrett attacks "cutting-edge" health professionals and paradigms - those that ARE achieving success in their segment of health care.
My post was merely to point out that quackwatch is not a reputable source of information, and will be discarded by most decerning mamas here.

I suggest you read this post if you want to understand the depth of knowledge that many mamas at MCD have on ASD http://www.mothering.com/discussions...d.php?t=367180

Frankly, I would give Dr James Laidlaw the time of day. But that's just me.

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#74 of 76 Old 04-12-2006, 02:05 PM
 
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Originally Posted by uccomama
The link I supplied you with works for me.
I'm on Firefox, and it still says "Can't locate the server." Thanks for pasting some of the content. I do like to get all sides. I wish I could read a proper rebuttal of what he says, though.

Quote:
Originally Posted by uccomama
I suggest you read this post if you want to understand the depth of knowledge that many mamas at MCD have on ASD http://www.mothering.com/discussions...d.php?t=367180
Thanks. I've been following the threads here; they're awesome. But why do you sound terse? I'm not telling anyone what conclusions they should reach. I only want to gather as much info as I can from all sides, as I have a child with autism and my feeling is that I would be doing her and my family a great disservice if I didn't do so. Your mileage may vary.

Quote:
Originally Posted by uccomama
Frankly, I would give Dr James Laidlaw the time of day. But that's just me.
Good; so he's a reliable source, then? What about the Environmental Health Perspectives journal? Anything we should know about that?
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#75 of 76 Old 04-12-2006, 02:19 PM
 
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Originally Posted by underthebluerug
Good; so he's a reliable source, then? What about the Environmental Health Perspectives journal? Anything we should know about that?
I don't have an opinion on any of them. Make your own mind up. I don't mean to be terse, but I really don't have a very high regard for mainstream medicine or research whatever the source. I won't go into why, because it would require me to write a book.

All my first post was pointing out was the highly dubious nature of your first link.

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#76 of 76 Old 04-12-2006, 02:24 PM
 
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What about Dr. James Laidlaw, who is responsible for the Autism Watch site? How's his reputation?
I do have a comment on this guy. I assume we're talking about Dr. James Laidler, who believes the autism treatment movement is quackery. I did read his piece here:
http://www.autism-watch.org/about/bio2.shtml

So he stopped supplements and his kids didn't deteriorate? Does that mean that none of the treatments are valid for anybody? I find that claim a little silly. As I've posted before, lab results have proven to me the reason why my daughter needs special diets and nutritional supplements, but Laidler is saying that because his kids didn't seem to need supplements and special diets when he discontinued them after a few years, that means that it's a questionable treatment for everyone? What about the dozens of studies that have demonstrated benefit for autistic kids who are supplemented with vitamin b6, not to mention parent reports?

As for this link:

Quote:
Barrett S. Commercial hair analysis: A cardinal sign of quackery. Quackwatch, Jan 5, 2001
http://www.quackwatch.org/01Quackery...pics/hair.html
This more addresses the use of hair analysis to determine nutritional status rather than metal poisoning. I tend to agree. We didn't rely on hair analysis when we determined that DD is deficient in almost all of her vitamins; that was a direct blood test. The hair analysis was more to determine lithium status and get a general idea of what we might be looking at in terms of metals. This link doesn't have much to say about metals though...it spend all its energy debunking hair analysis to determine nutritional status.

I don't have anything to say about the other link because I haven't been looking into chelation at this time, but I've read here and there that chelation challenges are indeed unreliable.
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