My Newfound Psychic Ability!
December 5th 2005 I offered a post on Interverbal, that contained a number of guesses of how the mercury etiology of autism advocates would react if, come 2007, the CDDS data weren’t decreasing. And so, just for fun lets see how I did!
Predictions:
1) Ignore it.
By and large we hear silence on this one. That’s a hit.
2) Invoke the possibility that the vaccines caused autism in a very small (compared to the whole) subset of children. The subset is too small to be noticed in the data.
Yep, I am two for two so far.
3) Call it a statistical blip.
Haven’t seen this one, so that’s one miss.
4) Say that it will take more time to see the effects.
Yes sir, I have seen that one.
5) Invoke other things that could take of the slack e.g. "flu shot, dental fillings, out gassing of coal run power plants".
Ding!Ding!Ding! [Confetti and streamers burst forth] We have a winner!!!
6) Present a new theory that involves accumulated mercury in parents slowing having been built up and now being manifested irregardless of the removal of thimerosal causing vaccines.
Haven’t seen it for thimerosal specifically, so that’s a miss.
7) Accuse the DDS of altering the data sets due to pressure from the vaccine manufacturers.
Miss,
8) Take a new interest on how the DDS really isn't epidemiology and was never supposed to have been used that way.
That is a big old hit! That issue, was a major contention point in some internet discussion recently.
9) Take a new interest in the fact that correlation isn’t causation.
Nope, that is a miss.
So, 5 hits, 4 misses, heck, with odds like that I could have my own psychic TV show! “The Other Side of Reality with your host Interverbal!”
Predictions:
1) Ignore it.
By and large we hear silence on this one. That’s a hit.
2) Invoke the possibility that the vaccines caused autism in a very small (compared to the whole) subset of children. The subset is too small to be noticed in the data.
Yep, I am two for two so far.
3) Call it a statistical blip.
Haven’t seen this one, so that’s one miss.
4) Say that it will take more time to see the effects.
Yes sir, I have seen that one.
5) Invoke other things that could take of the slack e.g. "flu shot, dental fillings, out gassing of coal run power plants".
Ding!Ding!Ding! [Confetti and streamers burst forth] We have a winner!!!
6) Present a new theory that involves accumulated mercury in parents slowing having been built up and now being manifested irregardless of the removal of thimerosal causing vaccines.
Haven’t seen it for thimerosal specifically, so that’s a miss.
7) Accuse the DDS of altering the data sets due to pressure from the vaccine manufacturers.
Miss,
8) Take a new interest on how the DDS really isn't epidemiology and was never supposed to have been used that way.
That is a big old hit! That issue, was a major contention point in some internet discussion recently.
9) Take a new interest in the fact that correlation isn’t causation.
Nope, that is a miss.
So, 5 hits, 4 misses, heck, with odds like that I could have my own psychic TV show! “The Other Side of Reality with your host Interverbal!”
posted by Interverbal at 12:06 AM
36 Comments:
Yes, Jonathan...
But the misses are only misses so far!
Can never tell what the mercury militia will come up with... or can't one?! ;)
You done rather well, so far :)
In baseball with odds like that you'd be escorted into the hall of fame.
I'm surprised that you've limited yourself to such narrow options! I don't know quite how you'd work it in because we need to appear logical, but television viewing is always a prime candidate, my personal favourite, and I'm pretty confident that the 'old parent / father' factor together with old father's vaccinations must have some unfathomable influence.
Cheers dears
Ewwww, but the mercury in coal burning power plants DO NOT give off mercury, do they? There is NO chance that mercury (or other contaminants) cause ANY problems, is there? We have had such a wild statistical ride over the past 10 years, I'm not sure which way is up as far as autism is concerned.
Whether random or by design, there has been an obfuscation of data, I still think that there is value investigating what might have gone on in the past 15 years. Call me crazy, I don't shive a git. I want to know what's going on with my girl...
Bill
livparents said: "Call me crazy, I don't shive a git. I want to know what's going on with my girl..."
Why don't you start by looking at or listening to her?
Whatever... a bunch of California's electricity is actually from the Bonneville Power Administration, which is hydro power (which may kill a few salmon runs, but does not use coal). But who cares?
Stop playing the blame game and just learn to deal with your kid. First give up pumping her full of additional chemicals... but learn to sense her wants, needs and habits. Find the best neurodevelopmental therapy that you can afford (and if you are in California with their more lenient NON-income based requirements, that is more than we could do with our child with a seizure disorder!).
Get over it, and get to work!
Hi livsparnets,
“Ewwww, but the mercury in coal burning power plants DO NOT give off mercury, do they? There is NO chance that mercury (or other contaminants) cause ANY problems, is there?”
The problem isn’t a debate whether coal fired power plants give odd mercury, but whether this has any effect on autism. And when we look at significant times of atmospheric mercury in the Western US, like after Mt. St. Helens blew in 1987, do we find a high rate of autism? The answer is “no”.
The problem I pointed out here, is that this potential source of mercury poisoning (however unlikely) is now being used to take up the slack for the lack of drop in California via removal of thimerosal from the DPT. It has become a shell game, where the real source of mercury slides around and is hard to pin down. And is this shell game the source is always assumed, even in the absence of proof.
I predicted this argument before it was ever used in this way. Although not even I foresaw the argument that Chinese coal burning was to blame.
As to finding out how to help your daughter, I wish you only well, as you already know.
"The problem isn’t a debate whether coal fired power plants give odd mercury, but whether this has any effect on autism. And when we look at significant times of atmospheric mercury in the Western US, like after Mt. St. Helens blew in 1987, do we find a high rate of autism? The answer is “no”."
But just as you can laugh off second hand smoke in the work place when non smokers complain of the 'smell' as they go into a building, for waitresses and bartenders it IS a serious issue!
Mt St Helens was an abhorration; we do need to pay attention to long term exposure.
Your subject is well taken, the stammers and humminahumminas are well underway (Kirby seemed almost castrated in his debate on that San Diego station). I really don't have a problem with the exposure of the groups pretending that 'all is vaccinnes/thimeresol'. I'm just not ready to say that ANYTHING is not to blame.
HCN- So at what point does you 'ethical barameter' go off as far as 'chemicals' being pumped into the body. Just like many ethical questions, there are dangerous treatments that easily cross the line; but at what point do I draw the line with 'chemical' (or for that matter non chemical) therapies?
We coordinate here therapies between home, school and her private Speech/OT. But I guess that's wrong too in your humble OPINION.
We have a disorder here that, despite your cries of 'always existed', has only been looked at for the past 20 years. with that liitle amount of time, it stands to reason that we do not yet know what helps children deal with the disorder. I suppose we should not have looked at ways to better teach people with dislexia; or not pharmaceutically treat children with ADHD. I'll admit that many of the treatments for autism run the gamut from useless to dangerous, but many are showing great promise, WITHOUT creating mindless automatons or risking the life of the child...
Bill
Puzzle me this. Mt. St. Helens caused a mercury spike in the western US in 1987 that lasted a year. This level was no notably higher than previous or following years.
If one is going to be dx'ed with autism they must manifest it by age 3 (excluding CDD which has a stable prevalence).
The power plant outgassing gets those 3 years to cause autism or to help cause it. That is it....
And via St. Helens, we know that for that 0-3 cohort, in 1987, up to 1/3 of the time they may develop autism in, was in an increased period of atmospheric mercury.
That fact, constitutes a failure of this theory.
As to second hand smoke. Up until very recently, I was skeptical of the effect of second hand smoke in terms of health. And I was unimpressed by the arguments from certain parties.
But data trumps politics, and recent studies convinced me otherwise. That is a major difference between second hand smoke and thimerosal etiology of autism advocates.
The only analogy I am drawing is that the vast majority of those griping about second hand smoke, say those in situations where their exposure is no where near that which would be considered significant, are screaming louder than many of those who may have a legitimate gripe about 2nd hand smoke (bartenders, spouses/children of heavy smokers, etc).
Mt St Helen's is like an annoying boss who smokes like a chiminey in his office and subjects all to it while they are talking to him. It is transient and temporary from the insultees perspective. Coal, on the other hand represents countless patrons of a bar, with a constant exposure to relatively low levels of the carcinogen. It will make a difference to those exposed for 5, 10 or 25 years... just like long term exposure to carcinogens in an environment MAY cause additional problems like autism in smaller groups of people.
Again, I see and agree with you point of the backpeddling, but the dismissal of environmental carcinogens as a humorous fallback for the comedy team of Mark and David is cheapening the environmental impact of pollution and its POTENTIAL link to autism...
livsparents said "So at what point does you 'ethical barameter' go off as far as 'chemicals' being pumped into the body. Just like many ethical questions, there are dangerous treatments that easily cross the line; but at what point do I draw the line with 'chemical' (or for that matter non chemical) therapies?"
At what point in the last century has there been a less chemical impact than now? Are you forgetting that "patent medicine" was often a source of heavy metals... that mercury itself was used to treat disorders? Or that kids in my generation actually played with the mercury that came out of broken thermometers?
Or that lead was a component of gasoline... and paint, which made its way into children? Or that industrial plants were spewing unfiltered smoke over communities less than 40 years ago?
So at what point do these things affect the environment and children's health less than the tiny bit of anything inside a vaccine?
You are grasping at straws.
"We coordinate here therapies between home, school and her private Speech/OT. But I guess that's wrong too in your humble OPINION. "
Good for you. Keep it up.
Now ignore the folks like Safeminds and Generation Rescue who are trying to get some kind of lawsuit settlement with help like liars like Kirby.
Livsparents,
I understood your point, but that is also the problem. These kids don’t get 5+ years to develop autism. They get 3 years and that is all they get. If one will argue that atmospheric mercury contributes to autism, then they must deal with those first 3 years; we can not add years to the formula for autism.
If (at the maximum) 1/3 of that time is in a period of significantly higher atmospheric mercury, I would expect to see what is called a “crest”, that moves across epidemiology charts like a wave as that cohort gets older.
“Again, I see and agree with you point of the backpeddling, but the dismissal of environmental carcinogens as a humorous fallback for the comedy team of Mark and David is cheapening the environmental impact of pollution and its POTENTIAL link to autism...”
I would argue that if the environmental link to autism has been cheapened, this has more to do with the fact that reasonable predictions based on this theory fail to support the theory.
Also, I think there is enough “complexity” here (I am being nice), that we can play the “where is the mercury” shell game forever. I think this will insulate this theory for a long-long-long time, even if evidence mounts against it.
Remember in 2005, there were still psychoanalysts advocating a mommy-child problem as the cause of autism.
I would also support a prenatal and even pre prenatal maternal/paternal exposure.
HCN:
You're talking to someone who's aunt WORKED at etching thermometers in her HOME for a living, next door to my home. HCL, all kinds of bizzare waxes and best of all, a jar of mercury in her closet we had to call the EPA to find out what to do with after she died! Yea, I played with a LOT of mercury in my day. Could be an issue, dunno...
Seems like you're helping me prove my point; that POTENTIALLY many of these carcinogens have had a factor in various developmental disorders, maybe that's why they stopped pumping them into the environment.
As far as ethical barometers, the only thing I'll say is as the risk goes up, so must the proof and the benefit...
Bill
"As far as ethical barometers, the only thing I'll say is as the risk goes up, so must the proof and the benefit..."
What risks? The risks of not vaccinating because herd immunity is being eroded?
That is what is happening.
The past of playing with nasty chemicals probably has more of an impact on your genetic material than any vaccine.
Oh, and why would a 1987 eruption of Mt. St. Helens be more dangerous than its massive explosion in 1980? The explosion that killed dozens of people in the blast zone, caused massive flooding and downwind turned day into night because of the massive ashfall. It still burbs and bubbles to this day, spewing out all sorts of gasses (probably more than any Chinese forest fires!).
HCN,
My source lists the major Mt. St. Helens blast in 1987. However, on double checking this, it is actually 1980.
So, the correct answer here is 1980.
And although I expect you are right about it producing more disturbance (at least in the US) than any Chinese forest fires (they are kidding right?) the major spike occurred in 1980
http://commons.wikimedia.org/wiki/Image:Mercury_fremont_ice_core.png
Or,
http://commons.wikimedia.org/
wiki/Image:Mercury_fremont_
ice_core.png
rather
As far as vaccines go, until they can give us data that 'classic' autism has not risen, I as a parent of a child of classic autism who regressed soon after several thimeresol laden shots, would like to CHOOSE to not vaccinate another one of my other children, a child who was showing signs of autism. It may be pure fear, it may be baseless, but causative (if that's a word!) as it may be, vaccine are one of my top 5 possible culprits for my daughter's regression and probably the ONLY one I have a say in.
Personally, I do not subscribe to 'the sky is falling' view of vaccinations. If someone asks me about vaccines for their newborn, I will ask them about there family history, whether they have had any neurological disorders in the family tree. Invariably so far, they have said no and I have said, you probably don't have to worry.
But, on a case by case basis, I can't understand the argument that my (and others with similar situations, which would probably result in say less than 1 in 2500 'eligible'; one in 10000 with my scenario for arguments sake) should be a concern for the statistic blip it would cause for the 'herd'.
Call it a 'potential allergy'...
Predictions or not, completely rational or not, I still subscribe to the POSSIBILITY of Jonathan's #2 prediction...that's why I'd like to see more done in the realm of grouping of autistics for analysis; I'd like to see what is going on in my particular 'subgroup'....
Bill
" I as a parent of a child of classic autism who regressed soon after several thimeresol laden shots, would like to CHOOSE to not vaccinate another one of my other children, a child who was showing signs of autism."
That is your perogative. In the USA it is not mandatory to vaccinate your child. Though in doing so you do run the risk of not being able to attend certain schools, or making sure that child is kept home when an outbreak occurs.
I am curious exactly how much thimeorsal your oldest had in her vaccines. I sincerely doubt that it was any more than a tuna sandwich.
As for neurological history... On one side of my son's family is a history of migraine headaches. This as far as I can tell is the closest reason for his neo-natal seizures. These seizures occured before ANY vaccination... and it is because of these seizures he has never been vaccinated against pertussis (at a time when pertussis was at epidemic levels in our county, which also corresponded to the measles outbreak in 1989-91 that killed 120 Americans, including a nurse in a hospital in a neighboring county). He also has a severe heart condition that makes him eligible for the flu shot before the general public.
He has had to depend on herd immunity. Something the lawsuit and lawyer driven folks at SafeMinds, Generation Rescue and NVIC (the National Vaccine MIS-information Cult) have jeopardized over the past 15 years.
There is no way on this green and blue earth that vaccines have caused his disability... And he is not the only one whose disability is not caused by anything outside of genetics and bad luck.
Which may actually be a more accurate explanation for your child's disability.
So, I think your chemical paranoia is still silly. The bit about a "vaccine allergy" is even more ridiculous.
But if you can come up with some real relevant research that shows otherwise (basically not any funded by lawyers or published in "Medical Hypothesis"). I will change my mind.
"These kids don’t get 5+ years to develop autism. They get 3 years and that is all they get. If one will argue that atmospheric mercury contributes to autism, then they must deal with those first 3 years; we can not add years to the formula for autism."
Strictly speaking, Jonathan, that's not quite true. Sure... for the dx to be F84.0 or 299.0, it is; but there's the leeway given in the criteria for what we in Europe call 'atypical autism' and you in the US call 'PDD-NOS'.
Bill: "I as a parent of a child of classic autism who regressed soon after several thimeresol laden shots,"
There is an immediate problem there.
You mention classic autism and then invoke a regressive element.
In 'classic' autism, there is no regression. It's a clearly and significantly different developmental path.
http://www.psychnet-uk.com/dsm_iv/autistic_disorder.htm
"Autism is a developmental disorder that typically appears during the first three years of life and may be the result of a neurological disorder that affects the brain. Autism is classified by the American Psychiatric Association as a Pervasive Development Disorder (APA, 1994). It is defined by symptoms that appear before the age of three which reflect delayed or abnormal development in Language, Social Skills and Behavioral Repertoire."
That's 'classic' autism (F84 or 299.0); the italics are mine. There is no mention of any regression. However, oe of the criteria for this is as follows:
"These symptoms are not better explained by Childhood Disintegrative Disorder or Rett's Disorder."
So look at those criteria and we see:
"A condition occurring in 3 to 4 year olds which is characterized by a deterioration, over several months of intellectual, social, and language functioning. Also known as; disintegrative psychosis or Heller's syndrome. This rather rare condition was described many years before autism but has only recently been 'officially' recognized. With CDD children develop a condition which resembles autism but only after a relatively prolonged period of clearly normal development. This condition apparently differs from autism in the pattern of onset, course, and outcome. Although apparently rare the condition probably has frequently been incorrectly diagnosed."
Now, if that is what you saw with your child (and by regression, you must mean that... you can't help but mean that!)... then the last sentence is what applies in your child's case (and it could also apply in the case of Rett syndrome suspecta, too.
The thing that differentiates is that autism (and I include all atypical autism and Asperger syndrome in this) as different developmental paths where there is no regression (this is based on the actual criteria here). Anything else isn't, strictly speaking, autism.
I hasten to point out this: that I haven't merely passed an opinion (a 'this is what I think, and bugger anyone else' type of thing); this is the implications of the criteria, as they have been formulated.
There is one explanatory factor in why it gets missed - especially in the US - and that's this: DSM-IV doesn't list SDD (Heller's syndrome). ICD 10 does.
Just noticed something.
SDD/heller's syndrome actually does have a DSM IV code... 299.10
They list it as a cognitive thing, rather than as a developmental issue.
Sorry for any confusion....
Got it David.
How much leeway would you you say.
I dunno, to be honest.
I'd be trying to find out with the developmental trajectory had been, so as to see if there was anything in the pre-3yrs bracket that would suggest a developmental thing going on...
If there's something becoming apparent even up to the age of seven or so that links back to stuff going on before three, you're looking at a probably slowly-developing autistic trajectory, and it may be that the kid's learning coping strategies that obviously influence the behavioural aspects of the issue.
In essence the HFA thing may well be about kids who are developing as autistics, but who have had opportunity and shallow enough developmental trajectory to be able to figure out coping strategies...
Ultimately, the leeway is determined by the amount of information you can get together about the early years....
My way of doing things is, as I did in my M. Ed. thesis, to treat each case as a grounded theory case study... where the dx emerges from the information obtained, rather than going in with an idea... confirmation bias is a bastard if it derails you from getting the correct dx ;)
For SDD read CDD
If you don't mind, what's "soon after"?
Mercury poisoning I don't believe works in a delayed timetable. You get poisoned, you immediately have symptoms; unless perhaps it's gradual low level poisoning over many years or something.
She received vaccines for Flu, Chicken Pox, Flu again then MMR, from a time frame of 12 to 16 months. Looking at the tapes in retrospect, we began to see regression around 17 months; by 24 months, we had received our 'official diagnosis'.
Who necessariliy says this is mercury poisoning? Nevermind, I know who...my point is that combinations of live viruses, accumulated heavy metals and a genetic predisposition COULD be a possibility for a certain subset of the regressive form of autism.
I'm sorry DNAMD, for offending your definitional sensibilities. For lack of a better term, I used 'classic' autism as a term used to define a child who has lost all her speech, have heavy stims, and are hampered in many day to day activities. Call it Low Functioning if you like. My angle here is that I am not dealing with a child that is simply speech delayed or has som minor quirks that may have classified her as an Aspie of PDDNOS.
Back to HCN, you have your specific sitution, I have mine. But why does YOUR specific situation negate the possibility of causation for MY child? I do NOT subscribe that Autism=thimeresol, how can you be so positive that 'all autism'<>vaccines?
This comment has been removed by a blog administrator.
David N. Andrews MEd (Distinction) said...
Bill: "I'm sorry DNAMD, for offending your definitional sensibilities."
Okay, smartarse. Two things.
One - this isn't my 'definitional sensibilities' that I was talking about. It's how the criteria are written. What is so bloody difficult for you to get about that?
Someone comes in and corrects you from his own professional background and you have to start treating him like shite? What is wrong with you, Bill?!
Two - get my bloody degree right! I'm no poxy bleeding medic with three hours a year's work of classes on why people behave as they do. I was five years in professional training and graduate school dealing with entirely behaviour and why it happens.
Bill: "For lack of a better term, I used 'classic' autism as a term used to define a child who has lost all her speech, have heavy stims, and are hampered in many day to day activities."
Well, that is not 'classic' autism if there has been a loss of previously held functional behaviour. Don't blame me for that. It is how the criteria are written. Get over that.
Bill: "Call it Low Functioning if you like."
Did I actually call it low-functioning? I don't think so.
What I said was this:
"You mention classic autism and then invoke a regressive element.
In 'classic' autism, there is no regression. It's a clearly and significantly different developmental path.
http://www.psychnet-uk.com/dsm_iv/autistic_disorder.htm
"Autism is a developmental disorder that typically appears during the first three years of life and may be the result of a neurological disorder that affects the brain. Autism is classified by the American Psychiatric Association as a Pervasive Development Disorder (APA, 1994). It is defined by symptoms that appear before the age of three which reflect delayed or abnormal development in Language, Social Skills and Behavioral Repertoire."
That's 'classic' autism (F84 or 299.0); the italics are mine. There is no mention of any regression. However, oe of the criteria for this is as follows:
"These symptoms are not better explained by Childhood Disintegrative Disorder or Rett's Disorder."
So look at those criteria and we see:
"A condition occurring in 3 to 4 year olds which is characterized by a deterioration, over several months of intellectual, social, and language functioning. Also known as; disintegrative psychosis or Heller's syndrome. This rather rare condition was described many years before autism but has only recently been 'officially' recognized. With CDD children develop a condition which resembles autism but only after a relatively prolonged period of clearly normal development. This condition apparently differs from autism in the pattern of onset, course, and outcome. Although apparently rare the condition probably has frequently been incorrectly diagnosed."
Now, if that is what you saw with your child (and by regression, you must mean that... you can't help but mean that!)... then the last sentence is what applies in your child's case (and it could also apply in the case of Rett syndrome suspecta, too.
The thing that differentiates is that autism (and I include all atypical autism and Asperger syndrome in this) as different developmental paths where there is no regression (this is based on the actual criteria here). Anything else isn't, strictly speaking, autism.
I hasten to point out this: that I haven't merely passed an opinion (a 'this is what I think, and bugger anyone else' type of thing); this is the implications of the criteria, as they have been formulated.
There is one explanatory factor in why it gets missed - especially in the US - and that's this: DSM-IV doesn't list CDD (Heller's syndrome). ICD 10 does."
Where did I mention 'low-functioning' in there?
I gave you some information for free that a US medic would have charged you a small fortune for. And all you can do is to come back at me and shoot the messenger! If I'd known that was going to be what you'd do, I'd never have bloody bothered. You haven't been worth this experience.
Bill: "My angle here is that I am not dealing with a child that is simply speech delayed or has som minor quirks that may have classified her as an Aspie of PDDNOS."
Nobody said that you were! I was pointing out that - according to the criteria - what you described was not the onset of autism... it was CDD. Different bloody thing!
Don't get on my back about it because you can't handle someone coming in and telling you your medic was wrong.
I don't see any point in responding to anything you put in as a post ever again. You can go to hell, for all I care.
David:
I just reread the chain and I can see where the confusion lies. My use of the term 'classic' was probably in error, but I was not trying to equate 'low functioning' (or children with no speech, high stims and low daily functional skills to be precise on what I was trying to say) with regression. What I was trying to say is that the 'subset' that my child belongs to is not the 80% that have caused the misconception of an 'epidemic' in the past 10 years since the DSM IV rewrite. We also do not have figures on whether that subset has grown, shrunk or been reclassified from Mental Retardation in the past 20. It is reasonable for me as a parent to want to know what those figures are as well as whether the subset figure of regressive autism has changed, as defined be my childs situation of regressing between 16-20 months.
As far as 'definitional sensibilities', I thought it a slightly off color, but no where near deserving the wrath heaped upon me. It stuck in my head and I used it to launch my explanation. If that offended you, David N Andrews Med (distinction) (which, the acronym is DNAMD), then I apologize. I hope Jonathan will vouch for my character, while laden with ignorance and occasional anger, is rarely overtly disrespectful...
Bill
I will vouch for Bill's character.
I also don't think Bill was being deliberately disrespectful.
Sometimes in discussion, when one means well and is trying to inject a little humor, it is easy for it to come off as disrespect. I think that is what happened. And I have been quite guilty of this myself once or twice.
That said, I want to mention that I do not act as a moderator on this blog (except for initial approval to make sure there is no spam), so what is said remains between you and that person.
Just in case my earlier attempt to post didn't work:
Bill: "I just reread the chain and I can see where the confusion lies. My use of the term 'classic' was probably in error, but I was not trying to equate 'low functioning' (or children with no speech, high stims and low daily functional skills to be precise on what I was trying to say) with regression."
It was definitely in error: regression is not mentioned at all in the criteria for autism - there is no regressive autism. Period. If there is a regression, involving the lost of previously held skills, then it is not autism (Kanner syndrome or Asperger syndrome, nor anywhere inbetween). The criteria for autism is clear on exluding Heller's syndrome from the picture first, before making a diagnosis of autism (which is a developmental issue).
I'm going to use a logical analysis to show you what I mean.
P1: the criteria for autism (Kanner or Asperger) do not mention regression;
P2: the criteria for Heller's syndrome specifically mention regression;
P3: the criteria for autism state that the presenting condition should not be better explained by Heller syndrome;
If - regression then not autism;
If - regression then Heller syndrome;
If your medical practitioner diagnosed autism in when a regression presented, then that practitioner is de facto wrong. This would be a good time to discuss this matter with that practitioner and take printouts of the information sheets I referred to. Making and adhering to an incorrect diagnosis is lying to the patient and/or his/her representatives.
Bill: "What I was trying to say is that the 'subset' that my child belongs to is not the 80% that have caused the misconception of an 'epidemic' in the past 10 years since the DSM IV rewrite."
If the criteria for autism actually included regression, you might be right. However, your child regressed and that means that autism should not have been diagnosed. This is a fact independent of the DSM IV re-write.
Bill: "We also do not have figures on whether that subset has grown, shrunk or been reclassified from Mental Retardation in the past 20.
I have to agree here... we do not have the full figures; but sure as hell, including Heller's syndrome (which is indeed a regressive phenomenon) in the autism lot (which are developmental phenomena) - that doesn't help anyone either. Makes matters more unclear, in fact.
Bill: "It is reasonable for me as a parent to want to know what those figures are as well as whether the subset figure of regressive autism has changed, as defined be my childs situation of regressing between 16-20 months."
Would make sense if there was such a thing as 'regressive autism', but - as the criteria show absolutely - there is no such thing. If it's a regressive issue, then it's Heller's syndrome, and that is the avenue I think you need to be looking down. It was certainly the avenue that Wakefield was looking down before the initial paper was revised to contain 'autism' and 'autistic colitis' (it used to say 'Heller's syndrome/Childhood Disintegrative Disorder' and 'Chron's Disease').
Bill: "As far as 'definitional sensibilities', I thought it a slightly off color, but no where near deserving the wrath heaped upon me. It stuck in my head and I used it to launch my explanation."
To ascribe to me 'definitional sensibilities' that are there for everyone to see in the diangostic literature isn't the best way of opening up a reply. I didn't make the definitions, I just use them... because they are the best we have at this time. Certainly looked (not just to me) that you were having a go at me about the definition, when I am not responsible for that.
Bill: "If that offended you, David N Andrews Med (distinction) (which, the acronym is DNAMD), then I apologize."
I'd find your apology easier to accept without you going on using my full 'name-title entity' instead of just using my name. Jonathan uses just my name. The reason why I put my title as well is because so many people have a go at me when I say somethign that - uncomfortable though it may be - is supported by the facts.
I actually saw, as did Jonathan, the initial response to your post. You think the one that is there now was bad?
Bill: "I hope Jonathan will vouch for my character, while laden with ignorance and occasional anger, is rarely overtly disrespectful..."
Certainly felt entirely the opposite of respectful to me.
People here in Finland actually pay me a lot to tell them stuff that I gave you for free. I certainly didn't feel validated in choosing to give you that information when I saw your response... it definitely smacked of disrespect. If the truth be known, I'd rather you save the disrespect for the clinicians who have sold you a lie, which - on the basis of what you have mentioned about your child - is clearly what they have done.
Thank you sir, for your knowledge, I will certainly take it into consideration. Forgive me for my filppant comments; one of my defense mechanisms in this quest is to take all I encounter lightly and to take all I encounter with a grain of salt. I'll TRY not to take you lightly, forgive me if I investigate your other piece of info...I suspect you would expect nothing less however, Thanx,Bill
Yea, but Heller looks to be 2-4 years for onset and is more likely to be boys than girls, I thought I read somewhere that there was some kind of regression in girls vs boys for SOMETHING, sorry to freethink on your blog Jonathan...
Hi Bill,
One is allowed to freethink here, but don't be surprised if those thoughts get challenged.
We tend to be pretty direct around here.
Bill: "Thank you sir, for your knowledge, I will certainly take it into consideration."
My name is David... Sir is what they called me at school when I was teaching mathematics.
Bill: "Forgive me for my filppant comments; one of my defense mechanisms in this quest is to take all I encounter lightly and to take all I encounter with a grain of salt."
Okay... I'll go with this and with J's attestation and let things go... and I'll thank you for your earlier apology and accept it.
Bill: "I'll TRY not to take you lightly, forgive me if I investigate your other piece of info...I suspect you would expect nothing less however, Thanx,Bill"
Indeed I would expect you to look into it. I do it all the time with professionals (after what happened to me as a result of professionals, I can tell you that it is absolutely imperative to do so). As a professional myself, I aim to avoid the sort of things that happened to me.
Bill: "Yea, but Heller looks to be 2-4 years for onset and is more likely to be boys than girls,"
Yes, but these are ball-park figures based on feedback from clinicians reporting to the people who write up the manuals (the World Health Organisation for ICD and the American Psychiatric Association for DSM), and there are - naturally - confidence limits for these. When the phrase 'at least ...' is used, it's a way of saying that 'after this lower limit, you can be very certain that ...'. The main point is that "CDD differs from classical autism in that it occurs in children who have had previously normal development who then appear to regress" (http://www.patient.co.uk/showdoc/40002248/).
Moreover, the likelihood issue refers basically to the probability of behavioural phenotypy occurring in a given section of a population (e.g., boys); often girls tend to be under-represented in diagnostic stats, and this could be for any number of reasons.
The interesting thing in your situation is that one of the differential diagnoses for CDD is mercury poisoning... which is not in the diff-dx list with autism.
Bill: "I thought I read somewhere that there was some kind of regression in girls vs boys for SOMETHING, sorry to freethink on your blog Jonathan..."
As J has said, free-thinking is allowed; maybe even expected (q.v., JBJr's blog, where it is total acquiescence to his doctrine or you get bollocked from arse-hole to Christmas for disagreeing with him).
Bill: "I thought I read somewhere that there was some kind of regression in girls vs boys for SOMETHING,"
Here's one thing that deals with the issue of regression in girls: "Presentation After developing normally in first year, child shows deterioration of language and motor skills. Investigation shows development ofmicrocephaly . Ataxic gait or fine hand tremor on movement is early finding. Unusual sighing respiration with intermittent periods of apnoea withcyanosis . Characteristically repetitive hand wringing movements with loss of purposeful use of hands may not appear until age of 2-3 years. 3 Autistic behaviour, generalised tonic/clonic convulsions, feeding disorders and poor weight gain. After initial decline, condition plateaus with autistic symptoms persisting."
(http://www.patient.co.uk/showdoc/40001749)
However, given the prognosis they give there, I seriously hope that it isn't this: the though of losing a child is not one that any parent would relish. The Wikipedia entry on Rett syndrome is more positive in its prognostic aspects: http://en.wikipedia.org/wiki/Rett_syndrome
"Infants with Rett syndrome typically develop normally until they are 6-18 months old. Physioneurological development tends to plateau after this brief period of normal development, and is followed by deterioration of the high brain functions. Psychomotor and cognitive abilities rapidly decline between 1-2 years of age. Symptoms that develop are similar to those of autism, including mental retardation and poor growth. It is, hence, easy to mistakenly diagnose Rett syndrome for autism, or cerebral palsy."
One more Wiki thing I found: "CDD has some similarity to autism, but an apparent period of fairly normal development is often noted before a regression in skills or a series of regressions in skills. Many children are already somewhat delayed when the illness becomes apparent, but these delays are not always obvious in young children.
The age at which this regression can occur varies, and can be from age 2-10 with the definition of this onset depending largely on the opinion.
Regression can be very sudden, and the child may even voice concern about what is happening, much to the parent's surprise. Some children describe or appear to be reacting to hallucinations, but the most obvious symptom is that skills apparently attained are lost" (http://en.wikipedia.org/wiki/Childhood_disintegrative_disorder)
Again, "CDD children develop a condition which resembles autism but only after a relatively prolonged period (usually 2 to 4 years) of clearly normal development (Volkmar, 1994)." (from the link on the Wiki page; like I say, the numbers are ballpark, based on clinical reporting.
Anyways, see what you think.
I came to the conclusion that it was Retts I was thinking of for the early regression, but she was tested negative for that.
It frustrates me as a layman, the sometimes random way the psychological community assigns a date/age to a disorder, as if it HAS to be within that date range. I have, over the past 4 years have completed my demystification debreifing on doctors; they are no longer the gods my parents made them out to be. I still have a similar diefication of disorders and diseases; having kids has made me slowly come to realize that diagnosis is an art and, psychological issues especially, have very blurred lines that no one wants to explore.
David, I'll stop clogging Jonathan's pipes now. Don't be surprised if you find me fighting for distictions between subgroups of autism and trying to learn what I need to worry about for the future of my daughter, thanks, Bill
(note, sir is just a distiction I put to someone with more knowledge than I, especialy when I'm trying to pick their brain!
Bill: "I came to the conclusion that it was Retts I was thinking of for the early regression, but she was tested negative for that."
Did they actually qualify how she tested negative for it? Dunno about where you are, but in Finland, medical practitioners will routinely consider themselves experts having read a leaflet about some condition or other, and very casually dismiss the notion of a diagnosis if a more well-educated parent (on that particular issue) dares to mention it. And entirely without having exmained properly to rule it out.
Bill: "It frustrates me as a layman, the sometimes random way the psychological community assigns a date/age to a disorder, as if it HAS to be within that date range."
Frustrates me as a practitioner, I have to confess! The notions of confidence limits and ranges of applicability end up (in the hands of the lazy practitioner) becoming strictly-constructed windows of confidence or applicability; and this is actually contrary to the cautions given to the clinicians by the DSM and ICD editorial board in their clinical guidance sections of the manuals.
Bill: "I have, over the past 4 years have completed my demystification debreifing on doctors; they are no longer the gods my parents made them out to be."
I was at medical school with trainee medics (when I was doing the biologyical sciences parts of my archaeology course), and that's when I found that they could never hope to be gods even if they tried (regardless of whether they thought they were or not!).
Bill: "I still have a similar diefication of disorders and diseases; having kids has made me slowly come to realize that diagnosis is an art and, psychological issues especially, have very blurred lines that no one wants to explore."
Sadly, I have to agree. However, it isn't the uncertainty that is the problem... it's the way in which clinicians deny the uncertainties and use the classifications as cook-book definitions. Simple example of what I mean:
Primary Insomnia (as per DSM IV) begins thus:
The main characteristics of primary insomnia are:
*For at least a month the persons main complaint has been trouble going to sleep, staying asleep or feeling unrested.
*The insomnia, or resulting daytime fatigue, causes clinically important distress or impairs work, social or personal functioning..
What about the patient who comes in after 25 days of not being able to get to sleep or stay asleep and is about to lose his job because of it, and therefore needs a note from the doctor to take to work and to his local social insurance office in order to get sick pay until the issue resolves? According to the first two criteria (as interpreted by the vast majority of clinicians), he has no chance of a diagnosis unless he waits a week and comes in again (by which time he's probably lost his job, and may also have lost his first six weeks' unemployment benefits). But DSM warn against this approach, yet practitioners still take it absolutely literally, as if these 'rules' are written in stone. In the case quoted, the practitioner should be prepared to make the diagnosis even at under a month, purely because of the threat posed to the patient's usual daily living (if one takes the caution given in DSM seriously).
Many medics and psychologists learn to perform statistical calculations but fail to actually understand what lies behind these calculations. And therein was an example of how it happens.
Bill: "David, I'll stop clogging Jonathan's pipes now. Don't be surprised if you find me fighting for distictions between subgroups of autism and trying to learn what I need to worry about for the future of my daughter, thanks, Bill"
I'm not entirely sure whether sub-groups are useful, unless one uses them to determine the types of support needed by the autistic person in question. Such a system exists on forensic psychology to determine the most likely sub-group of offenders a person would fall into in terms of characteristics and consequent care and rehabilitation needs. We don't, as yet, have such a really reliable system for classifying autistic clients in terms of support needs and characteristics that lead to these support needs (the usual HFA/LFA/AS/etc doesn't really help here... I have known some Kanner-type autistic people actually needing less support than an Asperger-type autistic person. If you were thinking along these lines, with this sub-grouping system, I'd probably be well behind you in the endeavour. Such a system could, if not abused by the powers that are, be very useful in the allocation of resources to meet the needs of autistics based on overall group of needs, whilst the more individualised aspects of support needs can be factored in to modify the basic group needs-determinations.
Bill: "(note, sir is just a distiction I put to someone with more knowledge than I, especialy when I'm trying to pick their brain!"
Ah, well, in that case you can call me professor... not because I am one (I'm not - yet!), but because picking my brains will mean that you'll owe me the enormous boost to my ego that being called 'Prof' will give ;)
Mind you... the Latin derivation of the word 'professor' is interesting: "professor (Latin: 'one who claims publicly to be an expert')"
Says nowt of being attached to an academic chair, does it?! ;)
(I'm too modest to go and call myself that!)
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