Autism: Kids put at risk

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http://www.latimes.com/features/health/ ... 7576.story

Spread the message, stop the quacks.

As much as I can't agree with some of the treatments parents try on their kids to help with Autism, the fact is that doctors don't know how or why it happens, and they wouldn't hesitate to pump a kid up with the latest Autism drug, so what's the difference between New Age quackery and Big Pharma quackery?

I find this saddening,frightening, infuriating, worrisome and much more within a kaleidoscope of other shades of thought and changing moods. What to do? Research takes time to perform and trickle down from the academia down to the general population. What I want to know is this:

How do we make a difference in each of our tiny spheres of influence,for us and for others presently, while waiting for the researchers to catch up?

I want to apologize in advance if I offend anyone, I'm looking at this a little "clinically"

I noticed this quote:

This "word of mouth" is terribly dangerous. I'm assuming the parents didn't take baseline data and then track certain "target" behaviors to determine if there was indeed a significant change that would suggest "recovery". No one question's anything about the treatment....safety or otherwise. It's very scary.

And what the heck is this?



Oh my lord, did we somehow get time warped back to the early 1900s?

WORM EGGS???

When I read that in the article, I had to stop and re-read it to make sure I read the passage properly. Hahah!

I've read that people once ingested worm eggs as a way to lose weight. No thank you!

I suppose the difference is clinical trials and actual data collection, but I get your point even so. There are dangerous and damaging things done with no data collection and no studies by these alternative practitioners. But of course mainstream medicine has inflicted ABA with aversives and such drugs with alarming side effects as Risperdal. The difference is that mainstream medicine has the data to prove that these things reduce the target behaviours they are designed to reduce (unlike the alternative therapies which have no such proof). The catch is that they reduce the target behaviours at an alarmingly high cost. The kid who gets electric shocks at the Judge Rotenberg center is pretty likely to stop doing whatever the shocks were meant to stop. But the price is incalculable psychological damage. And Risperdal can reduce aggression and violent meltdowns. But the side effects are alrming and some of them are permanent even if you stop the drug.

So I guess the difference is that the mainstream methods actually are more likely to accomplish what they set out to accomplish, but that those accomplishments are not worth it considering how damaging the methods are or can be (I guess not everybody has bad side effects on Risperdal).

This is sickening, and it needs to be stopped!

For the record, I have taken Risperdal more or less consistently over eight years and noticed no alarming side effects. But I was a fully developed adult when I began taking it. However, when I went off it for a while, I DID notice a difference, BIG TIME.

Other than that, yes the quacks need to be stopped. I was hoping that the disintegration of the American middle class after the financial crash would slow down the quacks, but I guess not. People still seem to have the money to spend on dangerous "therapy". We need to get out the message that people with autism need to be accepted, not changed. Some speech and occupational therapy is ok, but anything beyond that is not.

My parents were fairly strict disciplinarians. I don't regret that (I see what slacker parents produce), but so much that was wrong with me as a kid was due to something nobody knew about.

Because I feared being punished, I forced myself to behave the way everyone else expected me to...at least as best as I could.

So, I have lots of scars from those years because I never got help, rather I just force suppressed all the issues so I'd not be punished for acting out.

Yet he's still autistic...

I'm glad my parents didn't put me through that. I'm allergic to vitamin C. A megadose would kill me.

The difference is that the "latest autism drugs" have actually been tested and proven to be reasonably safe. You can't say that about the biomed stuff. Now, granted, many autistic kids are given drugs that don't help them; many drugs haven't been tested for pediatric patients; many drugs cause unacceptable side-effects; and many doctors resort to drugs when education or environment-regulation would help a great deal more. We have a very far way to go in learning to treat autism, and we need to get away from the idea of regulating peoples' behavior through medicine.

However, there's a long way from giving a child drugs that have been shown to be relatively safe in large-scale clinical trials, and administering substances that have had little or no testing at all. The first may be overkill or the wrong approach; the second is simply unconscionable. I'm not happy about autistics being given drugs when non-drug approaches would be longer-lasting and more effective, if only people would make the effort; but in no way is this equivalent to the utterly irresponsible ways many autistic children are being used as biomed guinea pigs.

Ok... two sides.

First some of those treatments are inhumane, and horrific, and no sane person should be subjecting children to them.

HOWEVER...

I go to a DAN precticioner (mentioned in the article) and she has advised nothing more serious than a good vitamin suppliment, avoidance of certain food additives, and at one point a gluten/casien free diet, which she agreed after a year wasn't suiting me. And some Magnesium and calcium when needed, and a probiotic. All harmless but I have found them very helpful. (The magnesium and calcium was to treat actual physical pain that doctors had failed to diagnose for over a year, and teh DOCTORS had done me extra damage in bad treatments and drugs..)) She is very nice, very professional, and would never endanger a child.

As for the hypobaric chamber (spelling may be wrong) my cousin uses one. He is autistic rather than an aspie, about 14 years old, and finds it helpful enough that he asks to use it when he is feeling overwhelmed or has missed a session. It is used at VERY low pressure, much lower than divers use, and is perfectly safe and harmeless at that pressure, and big enough not to be stressful or upsetting for the child. So what is the harm even if it doesn't help, which in at least this case it has.


Just saying the article is listing some things that are not necessarily inhumane or dangerous... although yes lots of them are.

True...to an extent.

Any "alternative medicine" treatment usually is untested because the medical community will not test them or not test them objectively.

Case in point: Vitamin C as a cancer cure. I've seen "research" (for lack of a better word) and testimonials of high doses of Vitamin C killing cancer in patients who have cancer. The medical community is silent on this claim. From memory, it's possible the medical community would claim that tests show that Vitamin C in large does does not affect cancer cells, but that's a generalized statement. Did the experiment use the same levels of Vitamin C as the holistic treatment employs? Are they basis that position on that it didn't cure every cancer patient they tested it on (traditional medicine does not have a 100% cure rate either)? Much data is omitted when traditional medicine denounces a holistic treatment for a medical condition.

Given that modern medicine (even in non-US nations) is a profit industry to several parties, the idea that something over the counter can have curative properties for pennies a day versus thousands of dollars in expensive medicines and surgeries is a major threat to those out to make a fortune off the sick.

So, I pay attention to holistic medicine because I know it's not all quackery. They don't have the same level of testing that regular medicine gets, but then again, modern medicine won't bother to seriously test holistic remedies except (from what I've seen) in an effort to debunk it as a treatment in favor of something being pushed by a big pharm corporation.

As one doctor I know who left the USA to go back to Israel said, doctors in America are nothing but glorified pill pushers. He plainly stated that if he used a holistic remedy that he knew would successfully treat 90% of patients first and complications resulted in injury or death, big pharma would gladly spend hundreds of thousands to punish him for not going straight for their product as a means of treatment, but if that big pharma treatment (which has serious and severe side effects) wound up harming the patient, they'd spare no expense to defend him for doing the "right thing" for the patient. He wanted the freedom to treat patients as he deemed best for them, not what was best for the drug company.

If the kid is going to be autistic, they're going to be autistic, if not, than they're not. I'm sick of the quackery that still goes on in today's world. The same quackery that led to Autism Speaks, in the first place. I hope that nobody has to be forced to swallow worm eggs. Why can't people just be allowed to be the way that God intended them to be. It's almost 2010. Enough is enough!

Because we've got groups out there (Autism Speaks) going around telling everyone that having autism is WRONG and needs to be cured.