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Joe Sark
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Joe commented on the article |I don't think people are oblivious to those kind of calculations. Rather, I think that two things go on:
1) It takes time for the "secondary effects" to start costing money, but we have a budget crisis NOW. So cut programs now to save money, and worry about the secondary fallout "later".
2) Individual departments may be tasked with cutting, say, 10% from their budget. When looking at where to cut, they won't look for where it will have the least effect on the end user, but rather where it will have the least effect on their own department. So if the particular cuts they make make it worse on the end user, but "transfer" the secondary cost to the user and ANOTHER DEPARTMENT'S BOTTOM LINE, then the obvious choice is to transfer that cost elsewhere.
Joe
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Joe commented on the article |Thanks, Dora, for posting this.
As the father of an African-American autistic male who will probably be quite large (his birthfather was huge), this is something that gives me pause all of the time.
I don't want to stifle his autistic nature. But neither do I want to attend his funeral after some over eager cop gets scared and shoots him.
Joe
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Joe commented on the article |Cure Autism Now merged with Autism Speaks in 2007. Not really all that long ago. If you type in [cureautismnow.org] it brings you right to the Autism Speaks web site. In fact, the web page announcing the merger is still up. On there it states:
“Cure Autism Now created a network of parents, bonded by hope, that partnered with scientists and accelerated research into the causes of and biomedical treatments for autism,” said Sallie Bernard, CAN's board chair.
I'm just going by what one of their board members said. I mean, I'm just saying...
Joe
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Joe commented on the article |
People I know using biomedical treatments for autism don't use the word "cure". In my experience the word "cure" is primarily used by those who mock biomedical treatments for autism.
Well...
There is that whole organization "Cure Autism Now", and Jenny McCarthy was not shy in using the word "cure" in interviews regarding her book. If no one on the "biomedical side" ever mentioned cure, I don't think anyone on the ND side would ever mention it, either.
I, for one, do not mock treatments that work. I do mock the thousands of treatments (from secretin to stem cell transplant to whatever) that have absolutely no scientific proof behind them, fleece thousands of dollars from parents, and divert their attention from doing things that actually might help their children. I also speak out against treatments that are potentially harmful to people, and also have no evidence of efficacy behind them.
I ask again, "Where are the peer reviewed scientifically rigorous studies performed by this alternative medical establishment?" They make millions from providing treatment, yet have no time or money to devote to research to prove that what they are doing is beneficial. That speaks volumes.
Joe
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Joe commented on the article |
Hi, Kristina.
Just read your reply above mine. Didn't see it until after mine was written. I'd like to think "Great minds think alike", though it would appear mine's just a tad slower. :(
Joe
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Joe commented on the article |
Hi, Harold. I looked back at my reply, and didn't find where I ever quoted the "cured" part of the statement. What I quoted was the second half, the part that said "...don't want therapy."
Talking about "cure" is when we get into a LOT of disagreements, disagreements that we don't necessarily have to have, in my opinion. That's why I try to avoid the "C" word.
Basically (at least the way I see it), when someone from the "Cure Autism Now" camp says the word "cure", they are referring to everything from "remove this disease process from my kid right now", to "allow my child to improve his social functioning such that he can get a job and live independently". On the other hand, when I see the word "cure" referenced from a ND point of view, it is mostly seen as referring to the "fix the damaged kid who is not normal", and is not seen as referring to "help my kid be able to gain skills such that he can get a job and function as independently as possible."
I think that there is a good deal of dialogue and common ground to be had if both "sides" (there are actually a "spectrum" of opinions, but you know what I mean) would avoid the word "cure" and focus on "what can we do to assist those on the spectrum gain skills such that they can function as independently as possible?"
Just my opinion.
Joe
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Joe commented on the article |
...how can bloggers think they know enough about this parent and child and their doctor to say that the parent is desperately doing anything based on advice from a huxster? ...
Hi, Twyla. Obviously, I don't know enough about any particular individual parent, doctor, or child to comment on what their motivations are.
But I do know what I see collectively. And what I see is a "fringe" medical establishment that claims to be "fighting for kids", when all I see is a bunch of practitioners who fail to take any real science into account, and charge big bucks for treatments that have NO proven value. After all these years and all that money that's been spent on "alternative" treatment, don't you think that some of those involved would have funded and done the necessary studies to show that what they do works? But they haven't, have they?
What I also see (on local autism support boards) are many parents who are distressed when they get an initial diagnosis. Most of us were, and many of us continue to struggle with the very real challenges that our kids face. And when people are distressed, they get "desperate". They do what "research" they can, which amounts to searching the internet and going to the bookstore, in most cases. When they do this, they find a BIG pile of stuff that has no basis in scientific fact (while being dressed up in pseudo-scientific "factlets" which make it sould plausible). They also find large groups of people that are ready to "help" them by pointing them toward "treatments" that have no proven benefit, and in some cases, have proven harmful.
I am a big supporter of individual rights, as well as the right of a person to parent their child as they see fit. I also recognize that autistic individuals (like everyone else in society) can also have real medical problems that might need treatment. Thus even though I don't think that the GFCF diet does anything in the vast majority of autisitic kids, I support a parent's right to try it, and to continue to use it if they see fit. It's their money, their kid, and it's basically not hurting them.
But my support stops when I see treatments (like Lupron and Hyperbaric Oxygen) that have possible (proven) severe side effects, yet no research to support their use in autism. Someone has to stand up against hucksters that would take advantage of a (largely) unsuspecting public, and yes, against parents that, when presented with the scientific evidence, continue to submit their children to possibly very harmful treatment.
Joe
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Joe commented on the article |
Well, less links so far then one might have expected. :)
While I'm not a member of ASAN and can't speak for them, I have never heard them saying they "...don't want therapy". They may (rightly) say that they don't think that kids (any kids) should be subjected to painful and possibly harmful treatments that have no proof of their efficacy. But I have also heard their members fully support things like speech therapy, as well as medical treatment for medical conditions (including GI conditions). I don't see them as being anti-treatment. Just anti desparately doing "anything" because some huxster tells me it will make my kid normal kind of treatment. Big difference.
Like all parents, I want the best for my kid, and ache inside when I see him excluded, taunted, and unable to fit in. But given a choice between a world view based on pitying him as broken and one that values him as a "different but equal" human being, I'll take the latter.
Joe
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Joe commented on the article |We always struggle with "the inclusion question". How much is enough, when is it beneficial, when is it better to have a separate venue, etc.
But we have always felt that everyone can be included for at least part of the day, and that it is beneficial for everyone ("normal" or not) to be in situations in school where they are exposed to everyone else.
How can we expect inclusive employment and housing opportunities in society later, if we can't even get a little bit of inclusion now?
Joe
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Joe commented on the article |This is HUGE! Charlie went on a ride with you!
Way to go, Kristina and Charlie! Sure it was a bit rocky, but that's how all "firsts" are. Next time will be smoother, guaranteed.
Joe
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