We covered several major topics relating to autism. Today’s post will deal with one important area - the science. Causation and treatment are the main topics. What follows is a transcript of the interview.
Thank you so much for agreeing to this interview, Mr. Twain. As your literary record shows, you have been quite a significant contributor in many areas of knowledge. Today I would like to tap into your expertise on a particular subject – the science of autism. For the benefit of the reader, lets start with some basic questions that will establish your position on some of the more controversial aspects of this topic.
Okay, in looking at the issue in an overall sense, there seems to be a body of evidence that is driving a small portion of our medical, research, and parents’ community to believe there exists a legitimate base of studies that would support the hypothesis that Mercury (in particular that contained in Thimerosal) can cause Autism Disorder.
“It was just a snow-flurry on a warm day: every flake was distinct and perfect,
but they melted before you could grab enough to make a ball out of them.”
I think I see your point – that the some of the research stands well enough alone, but that the sum of the results does not necessarily point to causation.
“You can find in a text whatever you bring, if you will stand between it and the
mirror of your imagination.”
Imagination? I’m not sure I would brush it off quite so easily. After all, these are respected scientists and researchers who have publicly proclaimed that they “know” this hypothesis to be true!
“Between believing a thing and thinking you know is only a small step and
quickly taken.”
But, Mr. Twain, of course you realize that the issues involved in establishing causation are incredibly complex, and certainly this hypothesis may stand as at least a starting point to really understanding what causes autism.
“Some things you can't find out; but you will never know you can't by guessing
and supposing; no, you have to be patient and go on experimenting until you find
out that you can't find out. And it is delightful to have it that way, it makes
the world so interesting. If there wasn't anything to find out, it would be
dull. Even trying to find out and not finding out is just as interesting as
trying to find out and finding out, and I don't know but more so.”
I understand that, but I think what the folks who pursue this hypothesis are really trying to do is determine the cause so that a cure can soon follow. Think about how miraculous that would be!
“The difference between a Miracle and a Fact is exactly the difference between a
mermaid and seal. It could not be expressed better.”
I apologize if I have overstepped my boundaries on this, Mr. Twain. I did not realize you felt so strongly on this issue. So, to clarify, it has been your opinion that the hypothesis that Mercury causes autism has no validity?
“It was not my opinion; I think there is no sense in forming an opinion whenFair enough. Now, aside from the strict Mercury adherents in the causation/treatment debate, there are numerous other “players”. Perhaps we could branch off into discussing some of them. Since it is a current event, perhaps we could begin with a brief discussion of Generation Rescue and their new website. Until now, this organization has always proclaimed, loudly and clearly, that autism is a misdiagnosis for mercury poisoning. Now it seems they have broadened their scope to include general environmental insults, non-specific viruses, and non-specific bacteria. What is your initial reaction to this change in the message from Generation Rescue?
there is no evidence to form it on. If you build a person without any bones in
him he may look fair enough to the eye, but he will be limber and cannot stand
up; and I consider that evidence is the bones of an opinion.”
Strong words, Mr. Twain! Though I understand you have a bit of a past with GR. Did you not once send them a letter in response to their inquiry on the efficacy of one of their recommended treatments? If so, what did the letter say?“You are a coward when you even seem to have backed down from a thing you
openly set out to do.”
“Dear Sir (or Madam):--I try every remedy sent to me. I am now on No. 67. Yours
is 2,653. I am looking forward to its beneficial results.”
On the subject of letters, I also seem to recall you had sent one to a Mr. Arthur Allen prior to his public debate with one Mr. David Kirby, author of Evidence of Harm. In it, you exhorted Mr. Allen to swallow his disbelief that Mr. Kirby could actually stand up before a group of scientists and proclaim that his mercury/autism theory had validity. Could you recount for us the contents of that partcular letter?
“My Dear Sir:Ah, yes. But, after the debate, you must have been at least a bit impressed by Mr. Kirby’s deft damage control since the 2006 CDDS figures put the last nail in the coffin of the mercury aficionados just one day prior to its occurrence. If you will recall, he immediately shifted his argument from vaccines being the source of mercury to things such as coal-burning factories in China and crematoriums in the U.S. I believe he even had some figures to back his argument up.
But you are proceeding upon the superstition that Moral
Courage and a Hankering to Learn the Truth are ingredients in the human being's
makeup. Your premises being wild and foolish, you naturally and properly get
wild and foolish results. If you will now reform, and in future proceed upon the
sane and unchallengeable hypothesis that those two ingredients are on vacation
in our race, and have been from the start, you will be able to account for some
things which seem to puzzle you now.
Sincerely yours,
S. L. CLEMENS.”
“Figures often beguile me, particularly when I have the arranging of them
myself; in which case the remark attributed to Disraeli would often apply with
justice and force: "There are three kinds of lies: lies, damned lies and
statistics."”
My last question for this segment of the interview is this, Mr. Twain. There is a movement in the medical community known as DAN! These doctors (and non-doctors) follow the tenets of some of the theories you have so unflinchingly discredited throughout this interview. What advice do you have for parents who are considering working with a DAN! Doctor to “cure” their child’s autism?
“Medicine has its office, it does its share and does it well; but without hope
back of it, its forces are crippled and only the physician's verdict can create
that hope when the facts refuse to create it.”
As always, a very profound insight Mr. Twain.
This concludes Part 1 of this 2 part interview with esteemed humanist Mark Twain. I hope you will join us for Part 2 – Mark Twain on the Autism: The People
55 comments:
Wow. Mark Twain is quite the catch. I hope you'll get his opinion on homeopathy.
Oh yes, lets use a dead author to defend the Holy Grail of science, because he can’t complain about it now. So-called “scientifically acceptable” tests have provided the world with Vioxx, Phen-Phen, rotovirus vaccines, and Thalidomide to name a few.
Scientist, called doctors, have taken what little successes they have had and perverted them into dangers. The over prescriptions of antibiotics have created super strains that are now immune to most know antibiotics. The only know treatment for gonorrhea is now becoming worthless. The vaccine for benign chicken-pox vaccine has been scientifically proven to increase the more dangerous and neuologically damaging Shingles.
Fortunately, a medium in the area was able to summon Twain’s spirit so I ask a few questions:
Since the CDC and IOM work in the government’s best interest of everyone, we should never question these scientists’ claims, should we?
“The scientist. He will spend thirty years in building up a mountain range of facts with the intent to prove a certain theory; then he is so happy in his achievement that as a rule he overlooks the main chief fact of all--that his accumulation proves an entirely different thing.”
But why would scientists from these well-respected establishments not want to be completely forthcoming for the well being of everyone?
“A scientist will never show any kindness for a theory which he did not start himself.”
That makes complete sense. Do you think that maybe that their statements might just be to cover their own butts and to keep their government jobs?
“Scientists have odious manners, except when you prop up their theory; then you can borrow money of them.”
Unfortunately, Mr. Twain decided to leave, but invited another great spokesman, P.T. Barnum to join us. Mr. Barnum, what is the one universally excepted scientific fact that all scientists must rely on?
“A fool and his money are soon parted.”
"Oh yes, lets use a dead author to defend the Holy Grail of science, because he can’t complain about it now."
I am not defending anything here, Chuck. I am using a literary ploy to attack bogus science and the resulting bogus treatments. Please avoid putting words in my mouth.
"So-called “scientifically acceptable” tests have provided the world with Vioxx, Phen-Phen, rotovirus vaccines, and Thalidomide to name a few."
And, of course they haven't done anything at all that's good for the human race, right Chuck? Let me guess - Big Pharma is evil and is opening Pandora's Box on all of us. Okay.
You are using a quintessential strawman argument here: that since I am opposed to "maverick" scientists and DAN! doctors, then I automatically espouse all mainstream medicine as being above reproach. Then you knock the strawman down in an attempt to strengthen your own position. Nice try, buddy.
And you use the "quintessential strawman argument" defence when you fail to realize that I knock ALL scientists, DAN, CDC, APA with my last statement.
My response to you is also, Nice try my friend.
Chuck said: "So-called “scientifically acceptable” tests have provided the world with Vioxx, Phen-Phen, rotovirus vaccines, and Thalidomide to name a few."
And how did we come to discover that these things were associated with unwelcome side-effects? Where was the cover up for Thalidomide? (back on the market, btw) How many adverse events did it take to pull Rotavax?
Somehow we manage to reconsider things like hormone replacement therapy and even recognize a possible connection with a few types of cancer but when it comes to thimerosal it's all CYA by the FDA? Nice try my friend.
The FDA can't even protect our pets from food poisoning from China. They are just as worthless as every other federal government agency. Nice try my friend.
Chuck -
Perhaps you could clarify your position a bit more, as your comments are somewhat disembodied from the content of my post.
Are you against all things medical? You vote no-confidence in the CDC, FDA, DAN!, and APA, and, in your own words, "all" scientists and "every other federal government agency".
What do YOU believe is a valid source of information?
Steve,
That was a fun blog to read; thank you!
I see you are attracting some indignation. This is to be expected, some folks are so upset with themselves that everything is worthless in their eyes.
Keep moving forward.
I have a financial background. So I take advice from the street. “Never take past performance as an indicator of future performance.” “Try to find the best possible advise for your need before investing”, and the old favorite “Determine you risk aversions and ask yourself if you can afford the loss of the investment.”
With this in mind I rate things as “Buy”, “Hold”, “Sell” or “Short”
The US government: The value of this stock moves too quickly and requires too much research to trade on value. If you trade on the volatility, it is a definite “Buy” market.
The CDC and FDA: Too much negative press without any show of management strength or guidance. Release of information necessary to determine value incomplete at best. Potential for any change in value in the short term: “None” “Short” this stock.
The medical and psychological professions: Mostly negative ratings in the skills of the workers. Many promises of new innovation that don’t meet expectations. A fully matured market with no opportunity for movement. “Sell”
Potential for any real positive valued services, investigations, education, or other vial needs to the ASD community as a whole from the federal government. “Short” that stock as well.
Final advise:
Look for “Small Cap” markets below the federal government for any value or “Buy” ratings.
Chuck -
Try to offer something constructive to the discussion.
You are welcome to comment, and to disagree with anything I say, as long as you do so in a productive sense.
You have yet to answer any question about where your beliefs lie, other than casting aspersion on virtually every institution having anything to do with autism. Perhaps its time to state your position or, alternatively, to go away.
Unsolicited cold-calls from brokers aside, I very much enjoyed this post Steve. Thanks for making me smile.
Hats off, Mr. Twain.
Federal Problems and my advise on resolving them
Autistic Spectrum Disorders are developmental disabilities with diagnosis criteria currently defined in Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV), published by the American Psychiatric Association, putting all ASDs under the Federal supervision of the National Institute of Mental Health (NIMH). Federal guidelines say the diagnosis of any developmental disability must be made before the age of 22. A new diagnosis criteria and disorder would need to be added to the next version of the DSM if there is a need for adult diagnosis.
ASD is not defined as a disease, sickness, or medical illness, nor is there any way to currently cure, prevent, or vaccinate against an ASD disorder. That being said, ASD is completely outside the scope of the CDC and there is no way for them to determine what does, or does not, cause ANY Mental Disorder, including ASD, under NIMH guidelines as it is outside the scope of CDC responsibilities. If CDC studies find a genetic code for a sub-population of ASD individuals, then that genetic diagnosis would be under CDC guidelines.
HHS department of the Federal government should set acceptable standards for all heavy metal toxicity diagnosis with the absolute best possible scientific tests available, the maximum amount of time after exposure the test must be performed in, the minimum threshold of exposure the test can accurately test for, and all toxins that can be currently tested for. The strengths and weakness of any scientific testing method used should be audited by an independent third party.
All vaccines, under CDC guidelines, voluntary or mandatory, given to civilian or military personnel, should have a report available to anyone through the web or by print with this information provided as a minimum:
1) Total number of people who have received the vaccine in the year for the report
2) Total number of people who have been clinically diagnosed with the illness the vaccine prevents in the year for the report.
3) Of those diagnosed with the illness, how many had been vaccinated
4) A breakdown by months/years of those diagnosed and vaccinated since the vaccine was administered.
5) A total count of VAERs for the vaccine in the year for the report.
6) All reported problems reported in VAERs for the vaccine in the year for the report.
7) The number of deaths in both the vaccinated and unvaccinated broken down by age groups.
Until standards are set, guidelines applied, and science is used, it is pointless, futile, and a waste of taxpayer money for government agencies to report on the incidence of ASD disorders or the causes that may, or may not have contributed to the number of people with ASD.
In my opinion, you can argue until hell freezes over, until some sort of sanity and accountability like I have described is put in place, your arguing with government agencies is a waste of everyone’s time.
Chuck -
You have responded with a productive contribution to the discussion. Thank you.
You have also come right out and indicated that you have given much thought to the role of heavy metals (read: mercury) and vaccines as relates to autism.
I undertand and sypathize with your desire to know the cause of autism. If indeed you believe that either mercury or vaccines are the direct cause of autism, I believe you are mistaken.
In my opinion (there goes that blog name again!), the mercury controversy began when someone attempted to draw a conclusion based on the concept that mercury poisoning looks a lot like the presentation of ASD. It does not. This is one of those fallacies that is so easy to reference and so blatantly untrue with even a brief perusal of available literature that I cannot understand how it persists. Oh, but how it has persisted. Let me say here that I believe mercury and autism have nothing to do with one another.
I also believe that vaccines and autism have nothing to do with one another, as far as causation is concerned. I do believe that autism may involve some type (currently unknown) of immune response, and that therefore vaccination becomes one factor to consider, as vaccines are, by nature, immunogenic. I do not believe that a person born with autism or even the potential to develop autism is going to have their outcome determined by vaccination.
Having said that, the remainder of your comment becomes irrelevant to this discussion. It is not irrelevant at all in the broader context, and much of it makes great sense to me. Its just that, as far as autism is concerned, I do not feel that mercury requires any further investigation, and I feel that vaccines are one of almost innumerable factors that play into the development of an immune system, and that the immmune system may or may not prove to play a causative role in autism.
Let me give a hypothetical to illustrate why it has to be a consideration in the problem.
A person is viciously mugged and murdered. A bullet wound severed a major artery, a knife wound severed another major artery. Coroner said the victim may have been able to live long enough to receive medical help if it had only been a knife wound or a gun shot. The coroner cannot scientifically rule if the gun shot or the knife wound was the actual cause of death.
Thimerosal is a scientifically proven neurotoxin. Autism is a defined neurological disorder. How could it be beneficial for someone with a neurological disorder to be exposed to a known neurotoxin? Maybe Thimerosal is just a knife wound to someone who has a genetic bullet that caused autism.
My problem is how could it be good for anyone to inject a substance that is labeled as a hazardous material?
I understand where you are going with the analogy, but here is where it loses its comparability to the thimerosal debate:
In the case of the mugging victim (setting aside the whole "victim" mentality implied in the analogy), there is clear physical evidence that one of the two wounds caused the problem.
In the case of Thimerosal, there is absolutely no evidence. The best evidence the proponents had - by their own admission - was epidemiological (comparing CDDS numbers indicating a rise in the number of diagnoses to the changes in the childhood vaccination schedule). The epidemiological evidence has, over time, evaporated. In other words, as the amount of Thimerosal in vaccines has dropped precipitously, the number of diagnoses has continued to increase, according to CDDS data, the same measuring stick that was used to support the initial hypothesis. Therefore, the scientific method has worked, and thimerosal has been exonerated as a causative agent in autism.
There are epidemiological studies that prove smoking doesn't causes lung cancer. Epidemiological studies cannot prove or disprove causation.
You are also trying to rely on a benchmark that I have pointed out, is not defined. Do all of the newly diagnosed meet the criteria for diagnosing a developmental disability and meet all the diagnosis criteria in DSM-IV? California is the only state that I know of that holds to a DSM-IV diagnosis criteria. Reading the most recent California statistics is also unreliable because the report fails to tell how many new cases are actually imports from somewhere else.
I see that you say you live in California. I do not. California seems to be the only real reports that people review because it does have some objective criteria in place, but they also point out many flaws, like the one I mentioned, so it is still a difficult analysis.
We agree on this point, Chuck. The CDDS numbers cannot prove causation, nor can epidemiological studies.
My point is that - that's what the proponents of Mercury/Autism hypothesis were basing their position on. The burden of proof is on those who propose the hypothesis.
So, the point is, if you believe that Thimerosal is a causative agent, what information is leading you to believe that? What evidence have you seen that would indicate there is a relationship?
Chuck:"How could it be beneficial for someone with a neurological disorder to be exposed to a known neurotoxin?
AND
"My problem is how could it be good for anyone to inject a substance that is labeled as a hazardous material?"
And who exactly is claiming that thimerosal is either beneficial or good for anyone? The question is, and it appears to have been answered, 'Does thimerosal cause autism?'
Well Chuck, do you think it does?
I went to someone I know and trust for information about mercury, my uncle. He is a retired dean of a school of Oral Pathology from a university in Michigan. He has trained other doctors all over the world. He has a great deal of first hand knowledge about poor lab processes and dental procedures with amalgams that contain mercury. He told me he couldn’t diagnoses toxicity because the only test that is approved isn’t how he found it. He had to biopsy tissue to find mercury, so he honestly told me he could never know where the mercury was or how much was in an individual unless he played darts on his patients with a hypodermic needle and spent countless hours on clinical tests.
We both agree that the jury is out on the hypothesis that heavy metal toxins contribute or caused some sort of increase in ASD disorders or some sub-population with ASD.
Steve, I would also like to point out that you have put words in my mouth that are incorrect. When I say “heavy metals”, I mean heavy metals. I do not mean just mercury. When I say mercury, that will imply both ethy and methyl mercury. Thimerosal would be only ethyl mercury. Please do not read one substance when I have stated another.
Well if Chuck's uncle says so, that's good enough for me. Well argued there Chuck.
Notmercury,
Since my post was to Steve about some of my sources of information, and you do not know who I am, and you do not know who my uncle is, and I do not know who you are, and I do not know if you are being serious or sarcastic, I do not know if I should thank you or be insulted. Please explain.
I was being sarcastic. I'll leave you to decide whether to thank me or be insulted.
Chuck -
Your post may have been directed to me, but all of this is in the public domain. NotMercury is a friend of this site and is welcome to comment on anything he would like to.
I think you will find that you will not be insulted if you moderate your tone and be more careful and pointed with your points of discussion.
You have spent a lot of time arguing in circles. I frankly am still not sure what your overall point is. That I am wrong? That mercury (I mean heavy metals) is bad? Or not? Or we don't know? That all government, science, and medicine is bad (except your uncle)? That you liked my Mark Twain technique and wanted to one-up me? That you actually want to learn something about this issue?
I believe that it is safe to say that it is not in anyone’s best interest to be exposed to heavy metal toxins. It is my opinion, based on my research that the science of detecting, diagnosing, and treating toxic heavy metal exposure needs a great deal of improvement. It is my opinion that government action for ASD based on today’s science is premature. I believe that any government research started today will never help my child. I believe that there are excellent doctors working for the CDC, as general practitioners, as DAN practitioners, but they are in the minority of their profession. My overall confidence in the medical community is low because the medical community’s ability to accurately diagnose and treat problems is weak at best. (Personal note: This is a list of medical professionals that my family has collectively had problems with concerning diagnosis and treatments: General practitioners, orthodontists, endocrinologists, dentists, endodonist, neurologists, ENT specialists, failed flu and chicken-pox vaccinations, DAN doctors, psychologists, optometrists)
Environmental or medical heavy metals cannot be blamed for every ASD diagnosis. My opinion is that up to 20% may have a contributing factor of some environmental insult and should be diagnosed differently as a result. I’m not a doctor and it is just my opinion. I also honestly believe that I will die long before any cause for any ASD disorder will be universally accepted.
I also honestly believe that I will die long before any cause for any ASD disorder will be universally accepted.
Your belief would be incorrect. Some causes for some ASD's are already universally accepted. Heard of Rett? There are more.
I'm sorry,
I stand correct, I should have said
I also honestly believe that I will die long before every cause for every ASD disorder will be universally accepted.
Chuck has said that he is of the belief that "heavy metals" contribute to autism. At least, this is what I could glean from his postings. In one post, he makes a rather awkward analogy to illustrate what is known as the "two hit phenomenon", wherein two sequential (or simultaneous) stressors cause more than additive damage.
Let me stretch this analogy a bit further, to bring us into the present time. Chuck posits a person who suffered a stab wound and a gunshot wound, neither of which would have been fatal by itself, which together were able to kill the victim. This is the assertion of Chuck's imaginary coroner.
Let us further imagine that knives were magically removed from the planet, so that nobody ever suffered a stab wound again. Yet, people were still dying from gunshot wounds that were identical to that sustained by the original victim in our story. Or, to make it more like the current time, that people were dying in larger numbers.
Would it not be reasonable to assume that the fictitious coroner was in error? That the stab wound did not materially increase the lethality of the gunshot wound?
In fact, the exposure to mercury - long supposed to be contributory to the prevalence of autism - has dramatically fallen since the 1980's, yet the prevalence of autism continues to rise.
Curious.
Prometheus
Some suppose that the prevalence of autism has been constant since the disorder was first described, while others claim that the prevalence continues to rise.
Equally curious and equally unanswered.
Chuck,
You state that:
"Some suppose that the prevalence of autism has been constant since the disorder was first described, while others claim that the prevalence continues to rise."
Very true.
However, either assumption leads to the conclusion that mercury does not contribute to autism prevalence. Only if the autism prevalence were to fall after the reduction in mercury exposure could one conclude that mercury might have something to do with autism.
Answered.
Prometheus
Well said, Prometheus.
This gets back to basic scientific method. Begin with an idea (in the case of Hg/Autism, a correlation between thimerosal usage and autism prevalence), begin to test it, see what happens.
If the results of testing support the original idea, great. Call it a hypothesis and move forward. If not, your intial idea was probably wrong.
In this case, not only did testing not bear out the relationship between mercury and autism, but the initial epidemiological evidence (shaky to begin with) dissipated as well. So there's really nothing left to talk about.
Those who cry out for additional research are in a position of trying to continue to reinforce their own world view, which is no way to approach problem solving in science (as was so clearly addressed in Prometheus' post titled "What You Want is What You Get").
You make the assumption that mercury must not have been present when Kanner first described Autism. That is historically incorrect. You assume that the use of Thimerosal and the vaccination rates of children has been held to a constant. Also historically incorrect. If autism rates fall after the complete elimination of the use of Thimerosal, then one could conclude that Thimerosal might have something to do with autism.
The question still stands.
Your hypothesis also assumes that the prevalence of autism has been accurately calculated and the technique used in calculation the rate is uniformly used. That is also an incorrect, unscientific assumption.
Chuck, you continue to contradict yourself and make no sense. Let me see if I can help you think this through.
By your own admission, there are no accurate measurements for prevalence of autism.
Therefore, by your own admission, no epidemiological evidence can be brought to bear in support of the mercury causation concept.
If you accept that no known biological mechanisms cause mercury ingestion to result in autism disorder (you may dispute this, but you would be wrong - and before you try please be prepared to cite specific studies, then you are left with these known facts:
-Autism disorder exists
-Mercury exists
Nothing more, nothing less. If you choose to draw conclusions based on this "evidence", so be it. End of discussion.
By your own admission, there are no accurate measurements for prevalence of autism.
Correct
no epidemiological evidence can be brought to bear in support OR TO DENY the mercury causation concept.
Correct
-Autism disorder exists
-Mercury exists
Correct
All other statements you made were irrelevant based on these facts.
One relevant statement I made was this, Chuck:
"End of discussion."
no epidemiological evidence can be brought to bear in support OR TO DENY the mercury causation concept.
Or to deny other causation concepts like: hair conditioner, aliens, television, french fries, cell phones, etc.
You get the idea.
Chuck, are you trying out for "most unscientifc" person on the planet or something? Do you need a 10th grade science lesson about burden of proof in a scientific context?
Steve,
Earlier in this thread a point was made about needing better data regarding autism. This is very true. However, the elements of data for collection should not be selected and arrayed in a fashion that attempts to prove anything about vaccines, it should be gathered using data elements which will help us plan for the future. It isn’t that finding causes and reasons are not important to me, they are. I just don’t want to pump any more time, money or energy into trying to make that dead horse of mercury=autism appear as if it has life.
The CDC data being gathered is supposedly to be used for planning, but it is woefully lacking. The data, published in February 2007 was out of date before it was published, it supplies measures from 2000 and 2002. Nobody should be using 5 year old data to plan for schools and services. If we put causation aside for the moment, we have a large number of children right now that need special programs. We all need to get our arms around what the demand for these programs is likely to be in 2008, 9, 10….
I also am worried about autistic adults. If what I read on the WEB is any indication, we are not doing a very good job providing for them. I can not even find out how many autistic adults there are in this country. Maybe I am not looking in the right places, but I don’t think anyone knows. It is easier to find current data on the wolf population in Yellow Stone Park than it is to find data on the autistic population of this country.
My bottom line – enough about mercury, TV, cell phones and a hundred other causes. There are real people that need help, love and appreciation right now and more on the way. We need to start projecting how many special education teachers will be needed in the next ten years, how many classroom seats, what kinds of programs and what adult services. Today’s programs cost so darn much because the demand is far greater than the supply. With good planning we could reduce the cost of delivery and increase availability.
AV -
Thank you very much for this comment. You have absolutely struck at the heart of the issue. What I want, and what all of the good people I have met in this community want, is the best possible outcome for my son. My wife and I cannot provide the most desirable result we desire for our son without a whole-community effort. And, setting aside my own in-family preference, I want all autistic individuals to have the best chance at happiness that they can.
I am not a big believer in entitlements. I want autistic people to find success on their own merit - not as a result of governmental decree. I would like to see a situation where all autistic individuals are given the tools they need to succeed (be it education, various forms of therapy, technology such as communication devices, and anything else that provides assistance), and then to sit back and watch them succeed. We are all human - all of us - and a life of happiness and prosperity is not guaranteed - it is paid for in sweat equity. But if we, as a society, do not even provide the most basic supports, we are failing ourselves as a whole. Anyone who disputes this point is failing to recognize the contributions already being made very day by autistic individuals.
While I am a bit chastened by your comment - in that it correctly identifies the level of importance of the mercury debate as compared to the welfare of our autistic society members - I also still hold to the argument that the mercury argument is a "gateway" philosophy. In other words, subscribing to this philosophy puts the responsibility for properly raising a child into the context of "I will rely on a cure to make by child better, and then I can begin the job of molding him into a 'normal' person."
I will continue to speak out against this mentality (in the hopes of touching other parents the way I was by similar-minded sources), while my main focus is still on the pursuit of my son's - and all autistic peoples' - quality of life.
A clinically proven, scientific test to accurately detect and diagnose would answer the question of who truly has an autistic spectrum disorder. A psychological diagnosis criteria completely void of any subjective criteria, used globally, would help in accurately counting the true population that is effected. If the scientific study were able to prove causality, and prevent it, wouldn’t that be a benefit to society as well. Good science needs to be applied to solve the problem.
Chuck, The problem with developing a test for autism is that there isn't yet a consensus for what is autism. Until that is decided, then all tests will be circular - they are accurate only to the extent that they prove what is already assumed (i.e. that a certain person has or does not have autism).
If this is too hard for you to grasp, try this analogy:
A group of painters try to devise a test to determine the color "ecru". They come up with a variety of instruments and test them against a range of off-white colours, settling on the one that accurately reflects their profesional assessment of "ecru".
Yet, this instrument has not provided an evaluation of "ecru" that is better or even different from the subjective assessment of the painters. They have simply mechanized their subjective assessment.
This is the state of affairs with "autism" - it has no known pathology, no consistent natural history (i.e. prognosis, progression, expected outcome) and no consistently effective treatment. It may not be (and most probably is not) a single disorder.
Prometheus
My personal belief:
Autism is a spectrum disorder
Heart disease is a spectrum disorder
Diabetes is a spectrum disorder
Cancer is a spectrum disorder
Everything I have listed except ASD has a broken out diagnosis and treatment criteria for your specific type of Heart Disease/Diabetes/Cancer and treatments are very different depending where you are on the spectrum for Heart Disease/Diabetes/Cancer.
ASD needs to incorporate this type of refined approach like Heart Disease, Diabetes, or Cancer.
Steve,
Please don’t feel even the slightest bit chastened by my comments, you handle all comments very well. I am the one who was feeling fatigue with the outdated issues of causation.
I, also, am not a big fan of entitlements and especially entitlement thinking. In the long pull entitlements sap strength and create dependencies. However, some of the things that might need to be accomplished are so huge that without good data, a focused mission and some government support we don’t stand a chance of getting them done.
Keep up the good work.
Chuck -
Again, I do not feel you are posing a fair analogy. Heart Disease, Diabetes, and Cancer are life-threatening diseases. Autism is neither a disease, nor is it life-threatening. I feel it is irresponsible to analogize autism to these diseases.
Furthermore, you imply by association the the ultimate best-outcome for autism is a cure. I disagree strongly with this position. Autism, unlike cancer, unlike heart disease, unlike diabetes is a value-neutral condition. There is nothing "right" or "wrong" about it. It does not kill. It does not maim. It does not preclude a happy, productive life.
It is this foundational difference in perception of autism that leads you and I down completely different paths in looking at everything from cause to cure. Perhaps you will someday read more from people like those found on the Autism Hub and change your views - perhaps you will not. Either way, I recommend you set aside your arguments for a while and try learn something from the perspective offered here.
AV -
We are on the same page on all of this, and I appreciate your comments here.
As I quickly approach my 40th anniversary of being diagnoses with Type-I diabetes, which has no cure only treatment, and I talk to my friends who are cancer survivors and admit they are not cured but have lived very long with their disorder, I HIGHLY argue that my analogy is completely fair and completely apropos. I also know a great many endocrinologists, oncologists, and cardiologist who would provide the argument that the disorders I listed are not life threatening with the proper treatment. You ask for value neutral, then you should treat all disorders equally.
One of my very good on-line friends had his child needlessly killed in a strangle hold in an institution. I have read of many accidental drowning of autistic individuals. I have read WAY TO MANY articles of murder suicide of parents and autistic children. I have read of killings by law enforcement. I have also read of callus murders of autistic children by the people or organizations entrusted with the child’s care. Can you debate that ASD individuals may commit suicide? So I will also counter that ASD is also a life threatening disorder.
You can only learn from perspective offered if more then one perspective is offered.
All of our children look to their parent/caregivers for guidance. So we must provide a good example so that they can build good values.
I DO NOT have a “disease”. I have a non life threatening genetic disorder.
You teach by example in everything you say.
Chuck -
You continue to accentuate your willful ignorance with each inane comment you make. I would recommend perusing the blogosphere for a site more to your liking, since clearly nothing has been said by myself or any other commenter here that you agree with or feel is valid in any way. You seem to not be able to lose the insulting tone, and your arguments, completely void of any reason (heart disease is not a disease?) are really getting tiresome. I think you are one of those people who argues just to argue, and are emboldened by the relative anonymity of commenting on someone else's blog.
Tell you what - since you are so darned adamant about the fact that you are right and everyone else here is wrong, why don't you take the necessary time and effort to start your own blog? Then you, too, can attract like-minded people to your rants - people such as conspiracy theorists and chronic oppositionalists. I think you'd have a great time.
Chuck,
Your analogy with heart disease, diabetes and cancer falls apart because, unlike those disorders, autism has no known pathology (i.e. "cause").
We may not know all the causes of heart disease, diabetes and cancer, but the disorders have well-defined diagnostic criteria that don't rely of subject assessments.
Prometheus
"Tell you what - since you are so darned adamant about the fact that you are right and everyone else here is wrong, why don't you take the necessary time and effort to start your own blog?"
I think Chuck has a blog. Some parts of it are pretty decent too. The few 'autism science' parts aren't, if it's the blog I'm thinking of.
I am just wondering -
If vaccines have no relationship to autism; why do the Amish population have next to no cases of autism?
Thanks.
Scarlett -
The idea that "There are no autistic Amish people" has been well-explored, and is bogus.
Let me refer you here:
http://www.kevinleitch.co.uk/wp/?p=535
Feel free to return and discuss once you've read this information.
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