The unknown is exciting. As a species we seem innately curious about seeing whats over the next hill, beyond the next valley, what happens if we heat this liquid to its boiling point, etc etc. But fairly obviously, we quickly realised that if we didn’t exert some level of control over the things we were curious enough about to examine closely then the results were arbitrary and meaningless.
“Hey, look at that!” we exclaimed to ourselves, “we’ve just invented the scientific method. How cool are we?”.
Unfortunately, as well as being logical, nuanced creatures capable of appreciating such things as the pathos in satire we’re also reactionary and blinkered. As someone recently remarked:
Too many people on all sides of the debate(s) seem to wear blinders that prevent them from acknowledging how little we all know.
A statement I fully support. However, there are certain things that we need to be certain about when we treat autistic children.
Is chelation safe? Here’s Wade again, quoting a commenter called Random John:
At any rate, it’s still pretty unclear why chelation therapy seems to be successful for some children, but not for others. The polarity of the thimerosal and chelation debates does not seem to cover the ground necessary to understand what’s really going on.
Which is very true. Unfortunately, its yet another example of shutting the barn door after the horse has bolted. To worry about these things after you’re already treating an autistic child with something like chelation is quite simply stupid. If there are people who are concerned about what effects chelation may or may not have on autistic children then basic medical principles need to be applied: first, do no harm.
That means you need to conduct safety trials before using something that has the following warning on it:
The use of this drug [EDTA] in any particular patient is recommended only when the severity of the clinical condition justifies the aggressive measure associated with this type of therapy.
Recently such people as Dr. Mary Jean Brown, Chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control claimed that if chelators were used properly then they’d be safe. I take extreme issue with this viewpoint.
Chelation is essentially a chemical process – it alters the chemical composition of the body. Bearing that in mind, consider the following:
This review focuses on recent advances in the in vivo study of the whole brain in idiopathic autism…..Diffuse abnormalities of brain chemical concentrations, are…found. Abnormalities of ….brain chemistry…are evident by early childhood….
So, the brains of autistic people are chemically different then the brains of non-autistics. Given that fact, is it a) stupid or b) clever to use a process that alters the chemical composition of the person and which has never undergone any safety trials in regards to autism?
There’s a whole bunch of people here who need to take a drastic step backwards and do some basic safety trials on what is, irrespective of their beliefs, a poorly understood and potentially dangerous/fatal process.
Left Brain Right Brain 
I’m not like John, the real stats maven, but these are the rough numbers———–
Between the latest 2 years of stats 2002-03 and 2003-04, for ages 6-21 in the whole United States:
the number of kids with autism increased by 22,353
in the same age group, same time period,
Specific Learning Disability decreased by 11,372
Mental Retardation decreased by 8,777
The total of all disabled kids 6-21 in the Federal IDEA numbers increased 86,769.
(US dept of Education, Individuals with Disabilities Education Act)
There are lots of categories in the IDEA numbers but Specific Learning Disability and MR are two that *could* have some cross-over with autism, namely kids with the very same symptoms getting different dxs over time as information gets out about autism.
One can see that though that the total of all of the disabled kids went up by 86,769, the increase was not from MR or SLD, and that autism just offset that major decrease, with about 2,000 extra autistic kids compared to the decrease in the other 2 categories.
————-
I’m talking about increases and decreases in the total number of cases for the whole US. You can get the stats broken out by states.
Across state lines the percentages of autistic kids in schools can double, neighboring states have very different numbers of “school dxd” autistic kids.
There have been peer reviewed papers about diagnostic substitution, but I can’t remember where they are now, and I’m tired.
Hi Sue,
Re citations for peer reviewed articles talking about substitution.
Croen et al. (2002) worked specifically on this. Blaxill et al. (2003) were critical of those findings. However, there are some flaws in Blaxill et al. (2003). For example, they use the median of (4.6) taken from Kaye et al. (2001) to help calculate when kids get diagnosed. Medians have no business being used as means or modes, this was their error as shown by Jick et al. (2006) with their mean age of diagnosis at (3.1) years. Eagle (2003) adds some nice comments in support of diagnostic substitution as well.
The best case to date for diagnostic substitution come from Gernsbacher et al. (2005) and especially Fombonne (2003).
If you need help finding these, let me know.
Happy reading,
John
(Who claims to have nothing on that Diva lady in terms of stat maven-ship).
About Clone’s report:
So this shows me that the overall prevalence of mr was higher in 1996 than in 2000. Certainly a possible explanation of this could be a “diagnostic substitution”. Whereby, now some children who would have been formerly classified as mr are now being classified as “autistic”. I can accept that this is a possibility (or even probable). However, I guess the following comment in this same study makes me question the importance of the study:
“The prevalence of autism spectrum disorders for 1996 and 2000 is not included in this report. The rate for autism spectrum disorders in 1996 was 3.4 per 1,000 children aged 3–10 years (1), and a report describing the methodology and prevalence for autism spectrum disorders for the 2000 study year is under development”.
– This study is lacking a very important piece of the puzzle. The autism spectrum disorders for the 2000 study year. Have they done a report yet? It’s been 6 years and they can’t get us the autism spectrum disorders for the 2000 study year? Is it still under development? Why can’t that be included in this study? Didn’t they track them properly? Did they not like what they found? Did they need to go back to the drawing board? Did the numbers not add up? I don’t know. It may be a non-issue to you. It’s a problem for me. Am I not seeing everything that you want me to see from this study, Clone? It’s very possible…
– Sue M.
Ms. Clark wrote:
“The overall number of hadicapped kids in the system has been more or less constant for years. (school systems stats – the IDEA)”.
– Did they track the total number of handicapped kids (mr, autistic, other disabilities) in the system back in say… 1983? Now, that would be very interesting… Let’s compare the number of total handicapped kids from 1983 vs. the total number of handicapped kids from 1996, 1998, 2000, etc. For the sake of this discussion “handicapped” meaning mr, autistic, other disabilities.
– Sue M.
Sue M. “Am I not seeing everything that you want me to see from this study, Clone?”
No, I think you are seeing far more than is there. You seem to have a tendency to attach more significance to the absence of information. I noticed they didn’t discuss global warming here either. Cover-up?
I too wonder why the ASD numbers were not included in this report but my guess is the reasons are slightly less sinister than yours.
Due to the significance placed on such reports and the tendency to misinterpret statistics, the agency should be more inclined to crunch the numbers as carefully and thoroughly as possible before releasing a report that will be closely scrutinized by many. We all know what happens when preliminary figures are released in advance of careful analysis. Some people grow suspicious when figures are later revised.
Clone wrote:
“No, I think you are seeing far more than is there. You seem to have a tendency to attach more significance to the absence of information”.
– Admittedly, my post was confusing. When I wrote this:
“Am I not seeing everything that you want me to see from this study, Clone? It’s very possible…”
– I meant that as a serious non-combative question. Is there something else that can be determined from this study other than the fact that the number of children classified as mr decreased between the years of 1996 and 2000. If there is something else that can be determined I was asking for you to let me know because I certainly could have missed it. The fact that this question came at the end of my post (after some questions that I was asking outloud) was unfortunate :).
As for me attaching more significance to the absence of information, I don’t feel that I am doing that in this case. I am asking questions about it. It seems that you had the same question as I did (about why the asd numbers weren’t included). It may turn out to be unimportant but for now, it deserves a bit of questioning, no? Let me be clear, however, SOMETIMES (note, not always) the absence of information can be important… the “missing” vsd data comes to mind… may be important, may not….
Just out of curiosity, how many more years do you think that it will take them to be able to come up with the prevalence of asd children in the year 2000… Geez, it’s already been 6. I guess I can wait.
– Sue M.
I guess that’s always the problem when we leave it up to Them.
They never seem to do things the way They should and They take forever to not do it.
That’s why I’ve decided to do something about the situation and let Them know how I feel about Them. What I am proposing is that we develop a system whereby They will be replaced by different Them when They don’t do their jobs the way we expect Them to. I think that ought to show Them who They are messing with. Now, if I could just figure out who They are….
Are you with me or are you with Them?
6 years, Clone…. 6 years to determine the prevalence of asd children in the year 2000?
VSD data missing, Clone. Gone. Vanished into thin air. Poof! Incompetence — at best!
– Sue M.
Some things take time I guess. It’s been more than six years since thimerosal was suggested to cause autism. It’s been more than six years since chelation was claimed as a cure.
In less time, a small pharmaceutical company, owner of several Secretin patents, was able to sponsor a series of clinical trials to prove efficacy of secretin for treatment of autism. Somehow the trials were able to filter out considerable bias and motivation and show the drug to be no more effective than placebo. I’m sure you could not find missing data there if you try not very hard but it’s hard to imagine why they would omit data that proves a benefit.
So when wil the well designed chelation trials begin? I guess I can wait.
Clone wrote:
“Some things take time I guess”.
– Meanwhile, back at the ped’s office… “Here’s your flu shot, Johnny. Sit still”.
– Sue M.
Meanwhile, back at the DAN! office, here’s your Snake-Oil Cure du Jour. No need to sit still, we have straps.
Into The Unknown With The Unknowing
Nice way to bring us back to the beginning. A good place to end this fun… Let’s just remember, injecting mercury into humans is unfortunately NOT the unknown… So sad. Poof! I’m gone — just like the VSD data. Can’t wait to see how they explain that one in the court system one day. Should be good fun!
– Sue M.
“Meanwhile, back at the DAN! office, here’s your Snake-Oil Cure du Jour. No need to sit still, we have straps.”
I overheard some mercury parents talking about the need to strap the child down to get a blood sample or do the IV chelation.
One of the parents mentioned that an ingredient in the blood showed high levels when taken from a screaming child. That it showed a sign of stress?
Anyone know if that is true?
Sue-
The VSD data is not gone. The illegal datasets of the Geiers were destroyed, but the VSD is alive and well.
Of course, rather than pay the modest fees for access, the anti-mercury crew would rather invest their money to play around with allegedly autistic mice some more.
Me thinks SafeMinds would rather not know the likely truth – that thimerosal in vaccines didn’t cause autism. It would certainly wreck Lyn Redwood’s motivation.
Well if this message boards found on this blog are any indication, some members of the autism = merucry crew don’t even care to spend money on the “autistic mice”, they would rather spend it on promotion.
Correction:
“Well if THE message boards found on this blog “
Sue M: Poof! I’m gone
Does this mean you’ve left? For good this time? Again?
Bye Sue M.
How many times does this make?
She’ll be back again.. she always is. She said that she’d done talking to me, but she couldn’t resist having a go at me a wee while back (just to make me look a proper bastard, which – incidentally – those who take time to get to know me know that I’m not!).
You can never depend on her to keep her word.
Sadly.