Chelation Therapy kills 5YO autistic boy in USA

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danlo
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26 Aug 2005, 5:27 am

vetivert wrote:

this is such a difficult issue. i don't think i'd want to be cured (how would i know? - i have no idea what it's like not to be me), and i know people here say the same thing. but i have long known that parents of severely autistic children feel otherwise. and i'm so glad that litguy has expressed how he feels about this.

i've worked with severely autistic children and young adults, and i'm thinking of one 16 year old boy at the moment. he spent all day pacing up and down and taking off his clothes (this is in a school). his only way of expressing anything was to punch. he was a strapping lad, and his mother was small in comparison. every so often, he was taken into respite care, so she could recover from the physical damamge he was inflicting on her, not because he was violent in anger, necessarily, but because punching was his ONLY mode of expression - of fear, of joy, of love, whatever. she loved him to distraction, and refused to allow him to be taken into care on a permanent basis. and she worried constantly about what was going to happen when she was no longer able to meet his needs, through age, as he is going to need supervision for ever,

would i condemn this woman if she wanted a cure for her son? no, i wouldn't. do i condemn litguy? no, i don't.

i believe that i can say i don't want to be cured, and i can agree with people here who say the same thing. it's because we are able say those things that this is a moral dilemma. we function enough so that we are communicating on here, at least, no matter what other difficulties we have. how do we know if the boy i described would like to change things? how do we know he wouldn't? we can't, and so someone else is responsible for making those decisions. i wouldn't like to be in that position of responsiblity.

i still can't say i'm totally in favour of a cure, or totally against it. it needs to be considered in the light of individual circumstances. and i also support parents on here who do not wish their children to be cured. it's their decision, and they are the ones responsible.

as for the chelation issue - it sounds dodgy to me.

Well said, Veti. I agree wholeheartedly. There was a low-functioning autistic where I went to school. He would go to the toilet, come out wearing no pants, pace, recite entire team lists of every AFL club and recite statistics for individual people on those teams. He was also severely ret*d. He might be content currently, but if he had the capacity to view himself and what he might be, which do you think he would choose? You couldn't deny that a cure would be better than inevitable institutionalization, and being unable to even basically look after yourself. You can't blame parents for wanting better than THAT for their children. The only thing you can be angry at, is the methods of rehabilitation, not the desire for a cure. Don't mix up your own personal feelings on receiving a cure, because you're in a completely different situation.

Pandora
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26 Aug 2005, 7:08 am

Aren't we missing the point that not only is there no cure for autism but there probably won't be except maybe at the gene level. Autism is a condition that must be lived around and can certainly be helped by various therapies but it is to my mind extremely stupid and irresponsible to use autistic children as guinea pigs for unproven and harmful treatments.

With the lower functioning autistics, a lot of the time the "cure" is wanted by the people around them who are uncomfortable in dealing with the autistic person's "atypical" behaviours.

Back in the 1970's, there was this move to get children out of wheelchairs and into calipers because of the stigma attached to having to use a wheelchair. So all these poor kids had to walk painfully and slowly around. Eventually, some common sense prevailed and more wheelchair accessible buildings were made.

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Litguy
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26 Aug 2005, 8:27 am

Pandora wrote:

Aren't we missing the point that not only is there no cure for autism but there probably won't be except maybe at the gene level. Autism is a condition that must be lived around and can certainly be helped by various therapies but it is to my mind extremely stupid and irresponsible to use autistic children as guinea pigs for unproven and harmful treatments.

With the lower functioning autistics, a lot of the time the "cure" is wanted by the people around them who are uncomfortable in dealing with the autistic person's "atypical" behaviours.

Back in the 1970's, there was this move to get children out of kwheelchairs and into calipers because of the stigma attached to having to use a wheelchair. So all these poor kids had to walk painfully and slowly around. Eventually, some common sense prevailed and more wheelchair accessible buildings were made.

Pandora,

I'm not trying to be argumentative, but I think your wheel chair analogy misses the point entirely. For a person who cannot perform self-care at even the most basic level, or communicate their feelings beyond physical gesture, hitting, crying, and grunts, a real "cure" would be far more than just a convenience or a cosmetic approach.

Like you, I would not want a cure for myself. I am who I am and I value the strengths of it and have learned to overcome many of the shortcomings. Vehicles like this page and its community help as well.

My older, higher functioning son, while he has a very low IQ, is capable of speech and rudimentary self-care. My younger son, however, is very severly disabled.

It is impossible to put you and I, and my children, into one group, even if we all fall on a spectrum called "autism." A decision that you or I would make for ourselves should not be mandared, by our attitudes, on people who are in entirely different situations.

I agree with you that it is unlikely that there will be a real "cure" for autism in the forseeable future, and that if there was, it would probably be genetic engineering, certainly not chelation., and I would certainly not be very comfortable with that idea. However, we are speaking theoretically here.

If someone has a cold, they should probably just rest. If they have bacterial pneumonia, they should cure it with antibiotics. While autism is not a "disease," it is far more debilitating for some people than it is for us who are capable of discussing it here.

magic
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26 Aug 2005, 10:21 am

I agree wholeheartedly with Vetivert, Litguy and Danlo. Who are we to make decisions for other people, without even knowing them? Who are we to condemn others for decisions that they make? Yes, I oppose chelation (as a treatment for autism) and other quackery. At this point it is safe to say that all existing chemical "cures" are such. But I don't condemn parents for wanting their children live better lives, and be able to communicate with the world. Look at the examples provided by Vetivert and Danlo. These kids' problems weren't simply the matter of fitting in with NTs. They weren't just different, they were severely disabled.

By the way, just when I am typing this message, I see the following links in the ad section:
"Oral Chelation Program"
"Safe Chelation At Home"
"I Conquered Autism, So Can Your Child, Don't Manage Autism - End It"
Would it be possible that we show computer-related advertisements (or whatever), rather than autism-related? The latter all too often are of that kind that is not really of any value.

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26 Aug 2005, 10:28 am

Quote:

Would it be possible that we show computer-related advertisements (or whatever), rather than autism-related? The latter all too often are of that kind that is not really of any value.

I agree about the ads.

As a admin, could you acess the agreement Alex has with Google and see what our options are?

Or maybe someone who reguarly posts in the computer forum is familar with the terms?

BeeBee

spacemonkey
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26 Aug 2005, 10:49 am

The ads seem to feed off the text on the page. Unfortunately they are not sophisticated enought to understand the tone of the thread.

SquanderedPotential
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26 Aug 2005, 10:50 am

i agree that looking for a "cure" for your severely disabled child is not always a bad idea. but hell yes i would condemn these parents who used INTRAVENOUS chelation therapy, when apparently it is more dangerous. so from this i'm assuming that they either foolishly/selfishly wanted quick results or they hadn't done enough research. either way, they were being horribly negligent.

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Litguy
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26 Aug 2005, 12:11 pm

SquanderedPotential wrote:

While I agree with your criticism of chelation, I think that "condemning" parents goes a little far. It is not their intention to hurt their children. Nor are they being selfish, although a feeling of desperation may be leading them to be a bit "foolish." Chelation is a dangerous, and highly unlikely, "cure." The reports of "miracle" progress are often just reports of the progress that any child with autism in a good school setting might make. I recently read one that sounded just like my eleven year old's progress over the past year with just ABA and loving, understanding parents.

But please don't condemn. Save your condemnation for people who intentionally try to hurt others. There are plenty of them around.

eamonn
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26 Aug 2005, 1:10 pm

The governments should do something about these quacks and parents should start to utilise their braincells a bit more and not allow their children to be guinea pigs.

Litguy
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26 Aug 2005, 1:29 pm

eamonn wrote:

The governments should do something about these quacks and parents should start to utilise their braincells a bit more and not allow their children to be guinea pigs.

I agree with your second statement. As for governmental control, where do you draw the line? While I am not an adherent to these things, there are many medical approaches that are outside the mainstream that a lot of people find helpful. I'm thinking of things like aromatherapy, homeopathic medicine, accumpuncture, etc. These can be dangerous if people ignore other, more effective, treatments for serious illnesses, but there are other times when they are, at least, harmless, if not helpful.

Would you outlaw them all? How would you draw the line?

eamonn
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26 Aug 2005, 1:54 pm

Your right it would be hard to know where to draw the line and there are some alternative therapies that help people so i guess as long as deaths are rare we just have to grin and bare it. It seems wrong though that there are so many vultures out there that are willing to profit from peoples desperation.

BlackLiger
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26 Aug 2005, 2:11 pm

I personally say Fair enough to alternative treatments, IF they submit to scientific study to prove they aren't harmful (no need to give away secrets, merely let scientists observe some patients over a set number of years) and if they aren't harmful (no none natural/unrelated deaths or problems) they are allowed........

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Litguy
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26 Aug 2005, 8:12 pm

eamonn wrote:

Agreed.

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