Friday, March 31, 2006

On Tolerance, Cures and Neurodiversity

Tolerance is not about letting kids do whatever they want. Being anti-cure is not the same as being someone who does not want children to be helped. Neurodiversity is not an ideology that fails to recognize the liabilities of different neurological wiring.

Many misconceptions about neurodiversity and the anti-cure position have come up in blogs recently, and I've found myself addressing them. Ballastexistenz also dealt with a similar issue in a recent post.

Some people wonder if the neurodiversity concept applies only to so-called "high functioning" autistics. Some non-autistic researchers seem to think so [ref]. Even a famous autistic, Temple Grandin, appears to have opinions consistent with this view [ref]. This view, nonetheless, is one I happen to be against. For one, no one seems to agree on how the boundary between low-functioning and high-functioning is established. This is an inherently subjective and error-prone boundary, as is the boundary between autism and "normalcy". But more importantly, it does not make sense to speak of the need to accept human diversity while at the same time denying the diversity of those who are more different than ourselves.

Others believe that the neurodiversity concept is inconsistent with any possible medical liabilities which are relatively more common in autistics. I have addressed this view before in a posting titled Do Co-Morbidities Prove Pathology?

Saying that autism cannot be cured is sometimes interpreted as a claim that autistic people cannot move outside of the diagnostic threshold. It is clear autistics develop throughout their lifes. It is not impossible for a small portion of autistics to appear to "grow out of it". As I have noted, autism diagnostic criteria has moved up the spectrum considerably in recent times, so it is not surprising to hear more and more anecdotes of "full recovery". There are those who argue that such children were never autistic to begin with, but this kind of claim is not verifiable considering there is no medical test for autism. I should caution that I am not saying this to give false hope to parents who would much rather have non-autistic children. I'm just pointing out something that needs to be recognized.

Anti-cure and anti-treatment are often confused with one another. I think it is important to spell out the meaning of cure in relation to autism. To cure autism (based on the generally accepted meaning of the term cure) would entail turning an autistic person into a neurotypical person, and not just helping the person work around some of the liabilities of autism. Because of this, autistics feel that being cured would entail being transformed into a different person, with different dreams, talents and interests. Being cured of autism is therefore akin to ceasing to exist.

When autistic advocates express their opposition to the latest autism treatment, it is often assumed that they do so because they are anti-cure. This is a misunderstanding. None of the autism treatments currently popular are anywhere near a cure as defined above, so being anti-cure has little or nothing to do with opposition to treatment. For example, Michelle Dawson has clearly explained her opposition to ABA on ethical grounds in her essay titled The Misbehavior of Behaviorists.

Treatments are generally opposed because of their unproven effectiveness and potential adverse effects. In their desperation to recover the normal child that they believe is hidden inside the autistic child, parents try many different kinds of treatments, one after the other. These treatments may or may not be harmful in the short- or long-term. They are relied upon based on "thousands of anecdotal accounts". These anecdotal accounts need to be taken with skepticism, as I've argued in a prior post titled Placebo Effects in Autism.

I can't make generalizations about which management approaches are approved or disapproved by autistic advocates. Some might like ABA and others might not, for example. In the table below I summarize what my personal opinion on some of the most popular treatments is.

TreatmentEffectivenessAdverse Effects
ABAThere is a semi-experimental result by Lovaas which supports its effectiveness. The study has been criticized on methodological grounds, as the control group was not randomized, and the evaluators were not blind to treatment. The study also relied on aversives, which are often said not to be in use today.The Lovaas approach is a conditioning technique that is inherently coercive. There are some reports of PTSD following treatment. There are no follow-up studies into adulthood. The only follow-up study that exists was on the same Lovaas group, so the same methodological flaws apply.
Son-RiseNo clinical trials to determine its effectiveness have been conducted. The approach is a form of acceptance therapy.Given it's non-coercive nature, it is unlikely to have any adverse effects on the child. Parents, however, might be affected due to the false hope this program appears to promote.
GFCF DietThere is no effectiveness data on the GFCF diet as an autism treatment. To the extent that autistic people are more prone to allergies or to having Celiac Disease, it could be helpful, but it is doubtful that it treats autism itself.It appears to have no adverse effects. Supplementation with calcium would seem to be warranted, however.
MultivitaminsThere are some placebo-controlled double-blind studies which appear to show that multivitamins (particularly Vitamin B6 with Magnesium) result in certain improvements. Some studies seem to show that they don't. It is unclear if they only help a subset of children who suffer from malnutrition or a Vitamin B6 deficiency.Natural is not necessarily the same as safe. Vitamins are drugs. In particular, high doses of Vitamin B6 can cause peripheral neuropathy.
L-CarnosineThere is one double-blind placebo-controlled study which seems to show it is effective, but this study has not been replicated. There are anecdotal accounts from adult autistics who have found it helpful.There appears to be no data on adverse effects at this point. Some parents report increased hyperactivity. Again, because something is natural, this doesn't mean it is safe, particularly at high doses.
ChelationThere are no studies on the effectiveness of chelation therapy as a treatment for autism. Additionally, there are good reasons to believe that it is generally useless in that regard.A chelating agent can chelate minerals and nutrients in addition to heavy metals. Deaths due to hypocalcemia induced by certain types of agents have been reported. Long-term effects might include kidney damage. There is little data on possible long-term effects particularly given that parents are often told to keep chelating indefinitely.


A final issue I would like to address is that of the effect the pro-cure perspective might have on an autistic child. I believe this is a non-trivial issue. Suppose you are told that your personality is not really a personality, but instead the result of an injury, a virus or a poison. What kind of effect do you think this might have on your self-worth?

Wednesday, March 29, 2006

Is a Genetic Mini-Epidemic Possible?

In prior posts I argued that the California data is totally consistent with the absence of any noticeable autism epidemic between 1992 and the present time. This, however, does not preclude the possibility that the frequency of certain key alleles has changed slowly over decades or centuries.

This hypothesis is of course very speculative, and it would be impossible to test it in the short term. At best, it might be possible to carry out genetic studies of certain populations that have been isolated for a long time, such as the Amish.

What I want to do in this post is explore a number of genetic mini-epidemic theories. Note that these theories had been proposed to try to explain the explosion of autism diagnoses that started in the early 1990s. At this point we know the most likely explanation for the 'autism epidemic' is that of 'broadening criteria/awareness' – based on the changing characteristics of the autistic population and regional peculiarities. Nevertheless, these genetic theories do propose mechanisms by which the frequency of alleles might change in human populations over long periods of time, which could have intriguing implications on human evolutionary theory.

The Geek Syndrome Theory

This theory is often attributed to an article from Wired Magazine titled The Geek Syndrome (2001).

What the Geek Syndrome Theory proposes is that the success of the computer industry has helped geek types get better employment, marry and procreate in higher proportion than would have been possible in the past.


In another age, these men would have been monks, developing new ink for printing presses. Suddenly, they're reproducing at a much higher rate.


The article claims that autism "is surging among the children of Silicon Valley." It further notes that "the picture in California is particularly bleak in Santa Clara County." This specifically refers to the caseload of the San Andreas Regional Center. The statement is rather inaccurate (plus you might guess what I think about the "bleak" wording). The ratio to epilepsy in that Regional Center was 0.53 in December 2002. The same ratio in the Westside Regional Center was 1.19. As we know, the bulk of the 'epidemic' occurred in the Los Angeles area. Unfortunately, it is difficult to determine if San Andreas was slightly different to other parts of California, because of inequivalence.

There is some plausibility for this theory despite lack of supporting data. This is because a relatively high proportion of engineers and scientists can be found in the families of autistics [ref][ref]. Also, have you seen the video of Bill Gates rocking autistically?

The Assortative Mating Theory

I'm intrigued by the assortative mating theory because my father-in-law appears to be quite the Aspie, although undiagnosed. In a different time perhaps my wife and I would not have met. Today people are very mobile and are able to meet a variety of different potential partners.

This theory is proposed by Simon Baron-Cohen [ref], and it connects with his extreme male brain theory which proposes that males are good at systemizing. Baron-Cohen suggests that two parents who are systemizers might have a greater probability of having an autistic child. He further proposes that it has become easier for geeky types to meet each other because of better job opportunities, and more women working in technical fields.

Again, this theory is plausible but it counts with no supporting prevalence data.

The Genetic Drift Theory

This theory is not formally proposed anywhere that I could find but it is straight forward. In evolution theory the best known mechanism of change is natural selection. But there is another mechanism, called genetic drift. Basically what this means is that the frequency of alleles is not reproduced exactly from one generation to the next, even absent any selection pressures. In particular, if a liability suddenly becomes less of a liability, it has a greater chance of being passed down. A good example of this phenomenon is the evolution of blindness and albinism in cave-dwelling fish [ref].

In the past, autistics with immune system dysfunctions might have had reduced odds of survival. Similarly, a future where most human interaction will be carried out online might not require advanced speech or social skills.

There is some evidence that the human brain is still evolving and becoming bigger as time goes by [ref]. This could also be an effect of genetic drift. Note that a bigger brain is not necessarily free of liabilities. It implies that humans will require longer to develop. Neanderthals, who had 13% bigger brain capacity, did not have speech as advanced as that of Homo Sapiens.

Other Factors

None of these theories have any predictive relevance if pre-natal testing for autism becomes available in the near future as part of eugenics program aimed at eliminating the autism phenotype. If this comes to pass, it will likely not be without a fight. I also believe that such an event will not only be genocidal, but at the same time suicidal for the human race to carry out.

Further Reading


- Would You Have Allowed Bill Gates to be Born?

- Apology From an Autism Researcher.

- The Assortative Mating Theory: A Talk With Simon Baron-Cohen.

- The Autistic Genocide Clock.

- The Disability Rights Critique of Prenatal Genetic Testing.

- Genetic Studies of Autism: From the 1970s into the Millennium.

- Increase in Autism Caused by Modern Breeding Habits?

- The Neanderthal Theory of Autism.

- Scientific Brain Linked to Autism.

- Heritability of Autism.

- The Geek Syndrome.

- Autism Prenatal Testing

Monday, March 27, 2006

Request to join EOHarm denied

I attempted to join the EOHarm mailing list, indicating that my intention was to monitor emails posted there, and if necessary, to post rebuttals here in my blog (not on the mailing list itself). I don't see anything wrong with that. Still, my request was denied. Oh well.

John Best's Greatest Hits

Let me introduce you to John Best Jr. I actually started blogging shortly after I stumbled upon his blog. I thought it was necessary to address the sort of nonsense he likes to spout. This guy, perhaps the most vocal representative of the other side of the debate, hates autism, autistics and other minorities. He loathes the neurodiversity ideology and at the same time is obviously obsessed by it. Whenever he is unable to refute an argument, he either (1) explains it away as coming from a brain damaged by mercury, (2) claims that it is all just part of a vast conspiracy led by the CDC, the government and the drug companies, or (3) claims that the person making the argument does not exist.

John will likely claim the following quotes are taken out of context. But believe me, there is no context that can explain these away. I'll just let his own words speak for themselves. Enjoy.

John on homosexuality...

- Some "brilliant" goofball coined the term "Homophobia" in a pathetic attempt to bring some small measure of respectability to a perversion. Fortunately for me, I grew up in an era when people were not subjected to public acceptance of sexual perversion. I never "stomped" a queer and I don't approve of that behavior. I also don't want to have to hear about this nonsense portrayed as anything near normalcy.
It has nothing to do with fear which means there is no phobia.

- You can use any term you want regarding homosexuality. I really don't care. I'd just like to see it back in the closet where it belongs along with wackos who want to send pictures of their groins to people.

- The insanity of agreeing with those who poisoned our kids goes hand in hand with stating that homosexuality is not a perversion. It just shows how screwed up all of you are.

- The normal people who find that stuff disgusting aren't homophobes. They're what sane people call normal.

- The Neurodiverse tribe seems to be in basic agreement that homosexuality is a difference that should be tolerated.

- Claiming homosexuality is not a perversion shows how out of touch you are, Kev. Acceptability doesn't make it normal.


John on women...

- You seem fairly intelligent for a girl but you've been misguided.

- I'd suggest sending a nice letter to shut the dumb broad up.

- Read this post again so you can understand why the dumb broad received an apology.

- I guess she's proud to say that she got a letter that, to me, said "Shut up and don't bother me, dumb broad".

- That's interesting. I always thought you were female. I guess you just write like a woman.

John on tolerance...

- When a kid is already dead mentally due to mercury poisoning, there is no choice. You either try to cure him or you torture everyone in your family with autism until the day arrives that the kid has to be sent away... If he dies young, I will rejoice for him that he has excaped the nightmare that was his life.

- Celebrate their differences, LOL. How many parents do you think are that stoned that they would buy into something so absurd?

- This nut thinks it is demeaning to autistic people to refer to them as train wrecks.

- "Train Wrecks" is not a slur on the person but a comment about the effects of mercury.

- Mr Rollens was accurate in his use of the term "Train Wreck".

- The "Train Wreck" comment did not offend a LOT of people. I don't think it offended anyone. The dumb broad just wanted to use it in her deranged quest to discredit those who help poisoned kids. It has nothing to do with respect, bonehead.

- Were you offended by the "Train Wreck" comment? Give me your address so I can send you a crying towel.

- Get that address to me soon. My wife bought too many bananas so I'll send some for your daughter when I send the crying towel.

- It doesn't matter to them that that "different wiring" will cost taxpayers in the neighborhood of $5 million per person for these people who will never be able to hold a job.

- This sort of Neurodiverse philosophy sounds eerily similar to the philosophy that begets welfare recipients.

- As for spending money on the military, you will change your tune in a hurry if some crazed muslim shows up at your front door with a bomb strapped to his torso.

- As to what I'll do if my son isn't cured by his teens, I probably won't have a choice in the matter. He may have to go away for his safety, the safety of my other kids and my wife.

- I almost forgot your "tossed in the trash" comment. How do you suggest society care for those who can not care for themselves?

- You're right, name calling doesn't help arguments but it does make me feel good.

- Having to resort to insults doesn't say much for your side of the debate.

- You can teach a monkey to do some of the things that ABA does but you can't ever teach the monkey to think. That's why some of these Asperger's adults can repeat the crap they swallow from neurodiversity but they can't figure out that neurodiversity is based on obsolete principles which makes the whole philosophy invalid.

- Any decent father teaches his sons how to fight. Otherwise, they might grow up to be pussies.

- Why don't you just hook up with one of the guys from AutAdvo and have your own kid? That psychobollox guy's divorced. Clay is single and he's old enough that he'll probably croak before you get sick of him. Then you might have an autistic kid and, if not, you can always shoot it up with thimerosal and change it into an autistic kid.

- I'll assume you consider my position to be one of bigotry. Nothing could be further from the truth.

John on freedom of expression...

- In the age of the internet where any wacko with a computer can publish lunacy, I suppose the wackos are more difficult to ignore than they were in the past when no decent newspaper would publish their drivel.

John's profound insights...

- Mr Ed wasn't autistic. Neither was Flipper. In fact, Flipper may have cured some autistic people. I once had a very affectionate cat so it couldn't have been autistic although it didn't talk much. I don't think Hornig's mice were autistic until after she gave them mercury and they became violent like "Hands" from Boston Legal. So, there goes your "all animals are autistic" theory.

- I'm guessing Rett's would've been called a birth defect or brain damage...
Autism could not have been called anything because, as Kanner told us, it didn't exist. It was something that had never been seen before.

- Since we didn't have any adult autistics until the 50's, I think we'd be fine without them. Maybe without them, we could start making good cars again.

- I'm just pointing out facts. If there was no diminished capacity, there would be no need for a label.

- If you can cure all autism without using any chelation, you'll convince me.

- The premiss that anyone is autistic to begin with is absurd since autism didn't exist until doctors started shooting mercury into us.

- There is no such thing as neurodiversity. There is only mercury poisoning.

- If you're right and lots of autistics were missed in 1992, then it must be true that autism is decreasing more than the Geier's could see. Or, it was rising faster than we thought in 1992. You're not claiming that we missed the "Train Wreck" types of autism, are you?

- Einstein was not autistic. Autism had not yet been invented when he was born.

- The whole world recognizes that autism is not a normal existence except for a few freaks from Neurodiversity. That makes it abnormal.

- [Geier's] training in genetics makes him the perfect man for the job. Autism isn't genetic and he knows that. You should listen to him.

- Actually, it's your reaction that looks silly. Most people never heard of VAERS. It makes sense that lawyers would know about it and file the reports.

- If you don't want to cure him, why do you bother discussing autism?

- If your uncle wasn't diagnosed until the 1960's, it was probably early Alzheimer's from the mercury he had accumulated.

- If [Temple Grandin] is such a genius at talking to animals, why isn't she at the racetrack talking to the horses and picking up some easy cash?

- I could grasp the science if I wanted to but I'd nuch rather grasp a golf club or a Racing Form. The Racing Form is more of an intellectual challenge.

- If there was more hype and every parent bothered to notify the CDC, the [VAERS] data might be accurate.

- Both [prevalence going up and prevalence going down] can be true.


John's version of reality...

- It is not really a Government within the Government but an organization of wealthy individuals who literally rule the world. This organization has a name but I can't remember what it is. I learned of it in school a long time ago. It is made up of people with names like Getty, Rockefeller, Kennedy, etc.. They decide what rotten things must take place for the good of the world as a whole. They are probably the ones who told China, years ago, to limit families to one child. They probably ordered up AIDS to cut down the homosexual population and the African population. They, most assuredly, allowed Bush to attack Iraq. Yes, this organization exists and it is made up of old money worldwide. Whatever they have done will always be conjecture since they don't advertise their projects.

- I don't believe for a second that Not Mercury is telling the truth and used to be one of us.

- I don't believe Maria Lujan is real, nor do I beleive Not Mercury is real. I think they are just identities that your side conjured up.

- Autism was invented in 1931 by Eli Lilly.

- Your placebo effect may have a point but it's mostly another futile attempt to expect parents to hurt their kids by letting them rot in the abyss.

- I have not lost an argument to any of you wack jobs.

- The Geier's are trying to help children.

- What you consider peer reviewed research is actually drug company propaganda that is reviewed by drug company shills who are engaged in a coverup. It's pure bullshit and you know it.

- The people who want to disprove the fact that thimerosal caused the autism epidemic went into the history books and dug up stuff that they claim was autism.

- Playing horses is much more of an intellectual challenge then playing the stock market and is also more profitable and more exciting.

- Chimps are not related to humans. Darwin was wrong.

- The money and politics are much more important than the science here.

- You call good science junk science and fail to realize that the junk you call good science is actually corrupt science. That is why the science can't give you the answer. The answer is in the politics so you have to follow the money.

- Science doesn't use the word "probably". Chemical reactions either take place or they don't. Good science says that methyl B-12 helps 90% of autistic kids by giving them that substance that mercury prevents their bodies from manufacturing. The kids prove what the science states.

- My son has emerged from the APPARENT vegetative state. If I had not used chelation, he would not have progressed.

- I wouldn't be surprised if neurodiversity was just a sham concocted by the drug companies to make it seem that sane people agreed with them.

- The fact that mercury caused the autism epidemic is old news and only those involved in the coverup and damage control are still trying to deny it.

- I don't think all of these ND's are real people. I don't think some of the others who write blogs are real pepople. There's just too much opposition to curing kids and that makes zero sense unless you're a high functioning autistic who doesn't know any better. For any parent to buy into this crap requires either abject stupidity or an ulterior motive.

- That's the facts. Zero autism in my state in 1993 among school age kids. It did not exist. 1,600 autistic kids in 2005.


John and his knowledge of autism...

- Since the only things proven to cause autism are mercury and fragile X and fragile X is extremely rare, I'll just stick with saying autism is mercury poisoning for simplicity.

- If autism has always been with us as some of you claim, it certainly was nothing like what kids today are presenting like.

- While some Asperger's people claim high IQ's and seem to do well in areas that only require ROTE learning, they are sorely lacking in the ability put two and two together.

- No person with autism could possibly write the pseudo-intellectual musings that come forth from the pens of this batch of lunatics.

- You have not proven there was any autism prior to 1931 and you have also not shown there was more than a few rare cases of autism in China.

- What we do know is that Kanner described autism as something that had NEVER been seen before in 1943.

- The only difference between a profoundly autistic kid and a normal kid is the inability to rid the body and brain of mercury. There is no "wiring".

- The ONLY thing genetic about autism, aside from fragile x, is an inability to get rid of mercury.

John on autism treatments...

- I don't have all the facts about Lupron and have not tried it myself. I'd like to know more about possible side effects. It seems that references to chemical castration are far-fetched since it is suggested that Lupron should only be used on kids who have not yet reached puberty.

- I don't think it would matter if you're studying treatments for autism and the size [of two inequivalent groups] is large enough.

John on proper medical procedure...

- I had him checked for genetics and that wasn't it. The improvement I have proves it's mercury.

- We just did what we were told by Easter Seals to start, play, occupational, physical and speech therapy, bled him with leeches and checked with a priest about an exorcism.

- I saw no need to test for mercury. The improvement from chelation was all the proof I needed.

- I didn't test him. I didn't bother with chelation challenge tests because I thought it was too much DMSA to give him at one time.

- I did use tests. I ruled out genetics.

Friday, March 24, 2006

Latest on Geier Retraction

I was getting a bit impatient, so I asked Paul Choate of CDDS Data Extraction what the status was on the new data requested by Dr. Geier. I also mentioned to him that there's already a report that analyses new clients vs. drop-outs, but it only goes to 2004. Paul says this is a report by the local state college.

The basic part of the job is done, pending an administrative matter, he tells me. He goes on to explain that cases entering the system are leveling off, which is not surprising.


There is a recent flattening of autism cases, but it’s not necessarily supporting evidence for the downward thimerosal-based trend for at least five reasons.

1. There was a large artificial population spike in 9/2002 due to a system fix, and all caseload records counts grew proportionally, not just autism. Geier did not adjust for that quarter’s change data.

2. There was a change in state law in 8/2003 (CA AB1762, W&IC 4512) where the requirements for DD services was increased from one substantial life-functioning deficit to three substantial deficits. This law was specifically crafted to depress autism caseload growth, and it has had a flattening effect on the higher functioning caseload’s growth, which are Autism, CP, and Epilepsy. Geier did not adjust for that effect.

3. The autism population served by DDS is self-selecting, and has not been shown a constant and direct proportion of the true incidence in the general population.

4. The growth in Autism caseload has been geographically isolated.

5. The diagnostic characteristics of the population have changed dramatically, less MR and younger age among other things.


I wasn't aware of the 2002 spike, but the drop in 2003 coincides with changes in the Lanterman Act, as explained by Interverbal. There's an increase in newly reported clients (true new cases) in 2004. In 2005 Paul appears to be saying there's a "flattening". I interpret this as the population growth leveling off. Basically, what the law changes achieved was a short-lived drop in the number of cases entering the system, but it also resulted in lower caseload growth, perhaps leading to a leveling off of the autistic population served by CDDS in upcoming years. There's no sign of a drop apparently.

In any case, the new data will show that Dr. Geier's paper is unsalvageable, containing large shifting errors. His conclusions are invalid due to the methodological flaws mentioned, such as the cofounding factors due to changes in the law. However, the fact that what he claims are "New Cases" actually are not by itself renders the paper useless.

Sunday, March 19, 2006

No Autism Epidemic: Summary of the Numerical Evidence

[Note: For an updated analysis, see No Autism Epidemic: An Update]

In prior posts I have argued in favor of the idea that an autism epidemic has not occurred at all. In this post I will put everything in one place, include additional data, and clarify a few points. As always, readers are invited to scrutinize the data, my interpretations of the same, and post comments and/or rebuttals. In particular, all epidemic-causing-trigger proponents are explicitly invited to do so.

Proponents of the idea of an autism epidemic often rely on data from the California Department of Developmental Services (CDDS). But as you will see, this same data contains a wealth of information that can be used to disprove that such an epidemic ever took place.

Changing Characteristics

There is a problem of group inequivalence in equating number of diagnosed cases with actual prevalence and number of new diagnosed cases with actual incidence. What this means is that the characteristics of diagnosed autistics over time have changed, so comparing the number of diagnosed individuals from one quarter to the next is like comparing apples and oranges (or oranges to sheep).


Table 1: Changes in autistic client characteristics over time
QuarterEpilepsyProfound MRSevere BehaviorsLack of MR
Q2 199215.6%11.2%22.9%27.8%
Q4 199611.8%7.4%20.5%41.2%
Q4 20008.7%4.4%19.2%52.4%
Q4 20047.1%2.6%17.4%61.9%
Q4 20056.7%2.4%16.8%63.6%


Table 1 not only shows that it is not possible to make an accurate determination about prevalence and incidence changes, it also shows that a significant 'broadening criteria/awareness' phenomenon must be in effect. This is undeniable given this data. The following figure [courtesy of CDDS] also illustrates the point. Notice that the autism curve and the autism without MR curve run almost parallel to one another.






Broadening criteria does not imply that autistics diagnosed today who would not have been diagnosed in prior years are completely neurotypical. It simply means that the proportion of certain characteristics must be closer to those of the general population. Judging from the size of the autistic population and drops in these numbers it would appear that newly diagnosed autistics today are, in average, considerably less autistic than those at the beginning of the 'epidemic'. This completely undermines any epidemic-causing trigger theory.

Regional evidence

[Note: For an updated regional analysis, see Regional Differences and Quarterly Growth Due to Two Factors.]

In a previous post on regional differences I argued that they cannot be explained by environmental factors because of group inequivalence. In particular, the Central Valley (Fresno) Regional Center has the lowest prevalence of diagnosed cases of autism, whereas the Westside (West LA) Regional Center has the highest prevalence. Even so, there is no difference in the prevalence of mental retardation in these Regional Centers (using epilepsy as a baseline, as it is assumed to be uniformly diagnosed). This is illustrated in Table 2.

Table 2: Q4 2005 comparison of Westside and Central Valley
Regional CenterAutism IndexPMR+SMR IndexPMR IndexEpilepsy IndexSevere Behavior Index
Central Valley0.320.600.361.00.31
Westside1.610.680.311.00.45


[Note: A diagnosis of 'severe behaviors' likely suffers from subjectivity as well, and is probably not, by itself, sufficient to fulfill CDDS eligibility criteria. In any case, a purely behavioral mini-epidemic could be ruled out by separating a Central Valley-equivalent group in Westside and evaluating differences in behavior.]

Group inequivalence is clear, but it is also clear that there is probably no difference in actual prevalence or incidence of autism between these two Regional Centers, whereas the difference in apparent prevalence is about 500%. This difference is equivalent to the state-wide difference between Q4 1993 and Q4 2004 (almost the entire 'autism epidemic').

As Paul Choate of CDDS Data Extraction notes, most of the 'epidemic' is confined to several Regional Centers in the greater Los Angeles area, as illustrated by the following figure [courtesy of CDDS]:



The epilepsy argument

Autism has been linked to a seizure liability, and the CDDS data itself shows that the prevalence of epilepsy among autistics is considerably higher to that of the general population. It follows that an environmental trigger capable of producing an epidemic of autism would also result in an epidemic of epilepsy. Surprisingly, we find in the data that the prevalence of epilepsy moves upward at about the same pace as the population in the state of California. Currently, annual growth in number of clients with epilepsy is about 0.6%.

The mental retardation argument

An environmental trigger that results in brain injury or insult should be expected to increase the probability of mental retardation, and thus result in an epidemic of all types of mental retardation. Instead we find that the number of clients with mental retardation is growing at a pace slower than that of the population in the state of California. Cases of profound mental retardation are actually on the decline. (This is explained by misdiagnoses of autism as mental retardation).

Conclusions

The numerical evidence in favor of the notion that an autism epidemic has not occurred at all is clearly overwhelming. Those who claim an epidemic has occurred are apparently not aware of the problem of group inequivalence. This is compounded by fundamental errors in the use of concepts such as incidence and prevalence. In light of these observations, I recommend that all scientific papers that claim to show an epidemic has occurred be retracted immediately.

Saturday, March 18, 2006

Review: The Neanderthal Theory of Autism

Even though the Neanderthal Theory of Autism does not appear in the formal autism literature, it is intriguing and I believe it should be addressed and studied as any other autism theory. I will provide an overview of the theory, some evidence in favor, and finally I will list significant problems I've found this theory suffers from.

Overview

This theory is proposed by Leif Ekblad, a self-described Aspie, author of the well known Aspie Quiz and the Rdos operating system, and also the parent of children somewhere on the autism spectrum.

The theory basically says that behaviors classified as spectrum disorders in the field of psychiatry could be explained by genetic introgression from another species, namely the Homo Neanderthalis. Therefore, the author concludes, psychiatric disorders are not dysfunctions but rather differences, and psychiatric patients are, in general, functional.

The author points out that even though a Neanderthal ancestry for Homo Sapiens has been ruled out through mitochondrial DNA (mother line), hybridization is still possible. Neanderthals and Homo Sapiens coexisted in Europe for a long time.

Evidence and possible predictions


  • The DRD4-7R allele has been linked to ADHD and to a behavior known as novelty seeking (presumably more common in migratory humans) and has been found to be considerably more prevalent in Europe than in other parts of the world.

  • The diet of Homo Neanderthalis consisted almost exclusively of meat [ref]. If autistics have Neanderthal physiology, this would mean a high-carbohydrate diet is not the proper diet for an autistic individual as it might result in GI tract problems. The digestive system of Homo Neanderthalis was probably not adapted for diets high in gluten and casein. In the modern world, a more appropriate diet would be a Ketogenic or Atkins diet. A Neanderthal child in the modern world would probably suffer from a deficit of L-carnosine.

  • The Neanderthal skull had a volume about 13% larger than that of Homo Sapiens. This likely resulted in certain cognitive advantages but also liabilities. Bigger head circumference in a subset of autistic children has been documented. (It is not clear if this difference is maintained as they grow, however). This also explains labor complications. Combined with a normal-size skull, a bigger brain could also result in a number of medical complications.

  • Some researchers believe Neanderthal's language was simple, with limited vocabulary and grammar.

  • Neanderthals were expert tool-markers. Their tools were extremely prevalent and the tool-making appears to have required some level of perseveration.

  • Some believe Neanderthals were actually smarter than Homo Sapiens (due to their bigger brain capacity) but failed to survive because of their relative inability to communicate well. This is consistent with Dawson-Mottron (2005).

  • Intonation and voice pitch were likely different in Neanderthals. This is a common problem faced by Asperger autistics.

  • Although nothing is known about Neanderthal eye contact, lack of it is common in other primate species.

  • Neanderthals had "rodeo-type" injuries, which might suggest they had different sensitivity to pain.



Problems with the theory


  • Based on the Occam's Razor principle, I would conclude this theory is not necessary to explain autistic behavior. It is not surprising that great diversity in socio-linguistic skills exists in human beings, and that the bottom 1% (or some other arbitrary boundary) is established as the disorder boundary in the behavioral spectrum. Some behavioral spectrums have different disorder boundaries. For example, in the hyperactivity spectrum, the boundary is situated at the top 5% to 10% of the population. This probably results from the desires of school officials to control hyperactive children by means of medication.

  • If this theory is correct, we would expect autism and ADHD to be disorders almost exclusive of European populations. They would be unheard of in Asia or Africa. It is known that the prevalence of autism does not have any significant ethnic dependency. (The author cites the prevalence of online sites from different parts of the world, but this observation clearly suffers from a serious methodological flaw).

  • No evidence exists suggesting that any hybridization with Homo Neanderthalis occurred.

  • Autistics have been described as having low sex drive and an inability to resolve romantic relationships. Assuming these are innate characteristics which do not result from psychological factors or cultural incompatibility, then the Neanderthal Theory does not seem to hold water. It is unlikely Neanderthal would have survived as long as they did if members of the species had these characteristics in a significant proportion.

  • We might expect autistics to have a characteristic look. Instead we find that autistics look unremarkable, and are often even described as attractive. (It is possible Neanderthals were attractive, but we can't draw any conclusions either way. Some adult autistics report a brow ridge, but this is purely anecdotal).

  • It is unclear how this theory explains some of the more severe symptoms of psychiatric disorders, such as self-injury.

  • It is unclear if autistics socialize better with other autistics than with non-autistics.

  • The author's contention that small skull combined with a large brain might result in low-functioning autism is not necessarily consistent with known findings and cannot explain Dawson-Mottron (2005).


Thursday, March 16, 2006

The Autistic Bird

On a lighter note, if anyone thinks that autism does not occur in nature, check out this description of the Bowerbird from Wikipedia:


This bower is a U-shaped structure of sticks and leaves into which the male places a variety of objects he has collected. These objects--mostly blue or violet in colour--may include hundreds of shells, leaves, flowers, feathers, stones, berries, and even discarded plastic items. The bird will spend hours carefully sorting and arranging his collection, with each thing in a specific place. If an object is moved while the bowerbird is away he will put it back in its place. No two bowers are the same, and the collection of objects reflects the personal taste of each bird.

Geiers Retraction a Done Deal IMHO

I would like to ask bloggers on this side of the debate to refrain from disparaging JPANDS for the time being. Let's give them the benefit of the doubt and see how they handle this matter.

In response to my last communication sent to the Editor-in-Chief of JPANDS, Dr. Huntoon, he replied indicating that he would forward my concerns to the authors as it is fair to allow them to respond.

Meanwhile, I had received a reply from CDDS:


Thanks Joseph – let us know if you need supporting statements or other information.



Paul Choate
DDS Data Extraction
[phone removed]


I took them up on that and asked if they have data on newly reported clients (true new cases) and whether they could confirm if these numbers are dropping in reality. I got a reply from Paul Choate containing an Excel file with numbers going back to 1992. This is still the conventionally available data, but it will be very helpful in posts I plan for the future. I must say that the staff at CDDS Data Extraction obviously do a great job and are very responsive. Paul's reply follows:


Joseph –



Right now we are in contact with David, (not Mark) Geier. He has requested a two datasets, one showing “new consumers with autism” by quarter and the other showing number autistic consumers by quarter of their assessment date. Once they are produced and released our policy is that we will release it again to other requesters if asked. The only caveat is that if there is confidential information we must either encrypt or delete the confidential parts, or require Human Subjects review through our Agency, CA Health and Human Services. All of our information is subject to HIPPA requirements, and any new requests outside other state entities are charged at around $80 per hour necessary to produce.



Allow me to make a few points:



CA DDS has client evaluations (CDERs) on all clients over age three in our service delivery system. There is no requirement for California residents with autism or other developmental disabilities to be served by our system, participation is voluntary. Thus we do not have information on the prevalence of autism in the general population, we only have information on those who come to us for our services. It is unknown how our population reflects trends in the larger population, as the number of clients seeking our services is a function of a number of internal and external factors. You may surmise that as our services to a certain population become more widely known there may be a change in population of those requesting services. We pay service providers to provide services to eligible consumers, so service systems may have incentive to promote who comes to us for services. We are an entitlement system, so there is no other requirement, such as income level, only that a person meet our disability requirements:



http://www.dds.ca.gov/statutes/
laws_main.cfm



Lanterman Act
California Welfare and Institutions Code
Division 4.5. Services for the Developmentally Disabled
Chapter 1. General Provisions
4512. As used in this division:
(a) "Developmental disability" means a disability that originates before an individual attains age 18 years, continues, or can be expected to continue, indefinitely, and constitutes a substantial disability for that individual. As defined by the Director of Developmental Services, in consultation with the Superintendent of Public Instruction, this term shall include mental retardation, cerebral palsy, epilepsy, and autism. This term shall also include disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation, but shall not include other handicapping conditions that are solely physical in nature.


(l) "Substantial disability" means the existence of significant functional limitations in three or more of the following areas of major life activity, as determined by a regional center, and as appropriate to the age of the person:
(1) Self-care.
(2) Receptive and expressive language.
(3) Learning.
(4) Mobility.
(5) Self-direction.
(6) Capacity for independent living.
(7) Economic self-sufficiency.


This was changed from “at least one” of the major areas of life activity about two years ago in an effort to stem some of the rapid population growth to those with the highest need for service.



As for those who do come to us for service we have a date of determination of autism, there is such a date on over 98% of the autism consumer records. See page three of the CDER:

http://www.dds.ca.gov/FactsStats/pdf/
DS3753_CDER.pdf



I’m sure you have seen the “limitations” document

http://www.dds.ca.gov/factsStats/pdf/
CDER_QtrlyReport_Consideration_
Limitations.pdf



As to whether a client is on active caseload we have a Client Master File that has a status type. We maintain monthly copies of all CMF and CDER records back to 1992.

'0'= 'Diag and Evaluation'

'1'= 'High-Risk Infant'

'2'= 'Active Client'

'3'= 'at Risk Person (parents of potential clients)'

'4'= 'Inactive'

'5'= 'Closed Transfer'

'6'= 'Closed not DD'

'7'= 'Closed Deceased'

'8'= 'Dev Center Client'

'9'= 'Closed Other'

'S'= 'Closed - Out of State'

'D'= 'Closed - Not Determined'



So we have the status of every client by month from 1992 forward.



The majority of our clients come to us in age 0-2 through our High-Risk Infant program (Early Start), but autism diagnoses are usually made in the clients 3-5th year. Thus clients come to us often before they are assessed as autistic. This creates a problem with saying how the current population is growing; on the quarterly report we calculate net change of consumers with autism assessments. The numbers in our quarterly report reflect changes in active population who are assessed, so it is a mix of net inflow and outflow, combined with change in assessment with age.



Two interesting facts that have been documented are that 1) the nature of the served autistic population as reflected in the CDER has changed, and 2) that much of the growth is localized geographically, chiefly in a handful of Los Angeles area centers. It used to be that MR was highly co-morbid with Autism, but the rate of MR in the newer population is dropping. In LA area centers the Autistic population has grown to around 25% of the caseload, in central and Northern California the proportion averages around 10%. I’ll attach a chart showing the rate at the centers. This information is the same as what is presented in the quarterly report. The quarterly report is available online for the past few years, but is available in hard copy back to the early 90’s. We maintain a dataset that has the data from the quarterly report table 1 “Statewide” and table 34 “Autism” from 7/92 forward. I’ll attach the data and the MR proportion and geographic charts.



To summarize, we don’t serve the full population and client assessments change over time. When we send Geier the next round of information we would be willing to also send it to you.



Paul Choate
DDS Data Extraction
[phone removed]


At this point it is clear that Dr. Geier is aware of the terminology error, and is requesting the data on true new cases in order to at least be able to claim that even though the paper is mistaken, the conclusions are still valid.

I replied to CDDS with the following:


Thank you Paul. I'd certainly like to have a look at that data myself. Will it include number of drop-outs per quarter as well? Are there limitations on the use of that data? For example, could I post a table on a website with that data?

I have been analyzing some of the publicly available CDDS data, and I have noticed the declines in autistic characteristics over time that you mention, particularly mental retardation (all types), epilepsy and severe behaviors. At the same time, the proportion of lack of mental retardation is increasing every quarter. Additionally, prevalence in the Westside (West LA) regional center is about 500% higher than that of the Central Valley (Fresno) regional center, using epilepsy as a baseline, whereas prevalence of mental retardation is the same. This is all consistent with a 'broadening criteria/awarness' theory and I have written about it online.

I appreciate that CDDS data should not be used to make inferences about the prevalence of autism in the general population, but it is clearly used by others in this manner, and I mostly analyze it in this manner in response to that.

In any case, given the data that Dr. Geier does have, would it be possible in your opinion to conclude what he concludes in the title of the paper?

Early Downward Trends in Neurodevelopmental Disorders Following Removal of Thimerosal-Containing Vaccines

This suggests to me and I suppose to any reader that the number of diagnoses of autism are currently dropping in California.

Even if the data does confirm that there is some drop in the number of real new cases (which is highly unlikely IMHO) much of the paper is still wrong in its use of terminology as are its conclussions from the data it does present, and some kind of errata will need to be published. I'm sure Mr. Huntoon agrees.

Thanks again,

Joseph



I should emphasize that there is no question there is a terminology mistake in the Geiers paper which invalidates the entire paper. This is true regardless of whether the new data shows there is a drop in the number of true new cases in the last few quarters. This is why I claim that some kind of retraction is a done deal, provided JPANDS has some scientific integrity as I'm trusting it does.

Now, based on trends in the 3-5 age range, I do not expect the numbers to show there is a drop in true new cases. I suspect it will show numbers are either stable or going up. If at least 3 of 4 quarters in 2005 as well as the entire year of 2005 do not show a drop in true new cases, I will definitely have a word with Dr. Huntoon.

Tuesday, March 14, 2006

Mercury: This Generation's Refrigerator Mother

I've been thinking about why we do what we do. I can't speak for all pro-neurodiversity parents and autistics out there, but I imagine they have similar concerns. I feel we need to fight for our right and our children's right to not be labeled "inferior", "diseased", "brain damaged", or "mercury poisoned". I don't do this for myself, though that's an added bonus.

And it helps to have the facts on our side.

It may seem surprising that mercury parents must share some of these goals, except their approach is substantially different. Unfortunately, it's an approach based on a fantasy: That their children are perfectly typical in reality, were it not for a poison put in them by a malevolent entity; once the poison is removed, an autistic child regains perfect normality, and none of the issues I listed will be issues anymore. They will just be someone else's issues. These parents validate one another in order to cling to this fantasy with all they've got, even if that means concocting conspiracy theories to explain away a flood of facts and information that make their position untenable at best.

This is not that different to a fantasy from a different generation: That an autistic child is perfectly typical in reality, were it not for uncaring parents, particularly mothers who have not bonded properly with their children. Once the parents are removed, the child is able to recover, resolving all the issues I listed.

I wonder, though, what the relative merit of the mercury theory vs. the refrigerator mother theory is. Neither of these theories have any solid scientific grounding, and neither has been conclusively shown to be false (though I'd disagree on that about mercury). Refrigerator mother fell out of favor when it was discovered that autism is very heritable. But then why did the mercury theory take its place, considering that both are environmentally-based theories?

What are their similarities?


  • They are both environmental theories.
  • They both rely on the notion that someone is to blame.
  • They both largely deny heritiability, which incidentally is the only well known aspect of autism causality.
  • They are largely incompatible with neurobiological differences in autistics.
  • They are largely incompatible with any cognitive advantages of autism.
  • They lack any real scientific backing.
  • They are supported by scientists of dubious integrity.
  • They both assume that autism can't be anything but pathological.
  • And last but not least, both theories are simply wrong.


More importantly, what is the impact of each of these theories? In the generation that preceded us, it was the mothers of autistic children who were impacted the most. It is hard to imagine what they must have gone through.

But this generation is telling autistic children that their brains have been poisoned, and in some notable cases they are being told that their brains are literally "rotting". There are some who call them "diseased", "train wrecks", "mad child", "a plague", "worse than cancer", and so on. I seldom hear of mercury parents who are appalled by their children being referred to in this manner. I can only assume they don't mind and probably agree. And don't think for a moment that because a child can't speak, that child is unable to grasp what's going on.

Imagine what it is like to grow up thinking that your brain does not and cannot function properly because it's broken and poisoned; that whatever gifts you do have occur in spite of who you are, not because of it; that you are a burden to civilization, despite the fact that without your traits there would be no civilization to consider; that you are not worthy of being considered human; that if it were possible to eliminate all people like you, this would be done without a second thought.

Ten or twenty years from now, the mercury hypothesis will be remembered as the Refrigerator Mother of our generation, tossed in the garbage can of discarded theories along with so many others in the field of autism. Let's just hope that the pseudo-experts of the next generation can do better when they come up with new environmental theories that try to deny heritability, because at the moment the quality of such theories appears to be in decline.

Monday, March 13, 2006

JAPANDS Dismisses Retraction Request - Offers to Plublish Letter to Editor Instead

In response to my request to retract the Greier's paper, I have received the following response from the Editor-in-Chief:


Dear [Joseph]:

Your letter has been forwarded to me.

Do you wish us to consider this as a letter to the editor for publication in our journal?

Also, all letters to the editor are subject to editing for length, style and format. Unlike the Institute of Medicine, we welcome scientific debate and investigation. Derogatory and/or ad hominem elements, however,
will be omitted.

If you wish us to consider this as a letter to the editor for publication, please provide us with a statement regarding disclosure of any potential conflicts of interest and tell us something about your qualifications in the area of vaccinations,
mercury toxicity and epidemiology.

L.R. Huntoon, M.D., Ph.D., F.A.A.N.
Editor-in-Chief
Journal of American Physicians and Surgeons
[Email removed]


I have replied with the following:


Dear Mr. Huntoon:

No, my primary intention was not to have a letter to the editor published in your Journal. I simply would like my concerns to be addressed and answered in some way, preferably by having your peer reviewers contact CDDS directly to verify if the data presented in the paper reflects reality. The issue with the "New Cases" terminology is well known, non-trivial and documented by CDDS itself. It's not something I just came up with. By way of analogy, imagine that a peer-reviewed Journal publishes a paper on population growth where the authors define "Number of Births" as the difference in the population one year minus that of the previous year. Furthermore, the paper might argue, the "Number of Births" in Germany per year is below zero now. Would you agree or not that such a paper would need to be retracted? I look forward to your response.

This has nothing to do with credentials or conflict of interest, as I am not arguing about methodological flaws or discussing the paper's interpretation of facts. I am simply pointing out that there appears to exist a well-known terminology error in the paper.

Sincerely,

Joseph

P.S. I am copying CDDS and will also be blogging this.


Comments or suggestions?

Sunday, March 12, 2006

MarĂ­a Replies to Mercury FABNAQ

MarĂ­a LujĂ¡n has written up answers to many of the questions in the Mercury FABNAQ. MarĂ­a notes, however, that she does not believe "autism=mercury poisoning" so she is not responding in that capacity. Her position is known to be moderate, i.e. she apparently believes genetics are involved, as well as 'broadening criteria', in addition to possibly many environmental triggers including mercury from vaccines and the environment. Her responses are discussed.


  1. Considering that the prevalence of epilepsy among autistics is known to be an order of magnitude higher that that of the general population, why is the CDDS-based prevalence of autism rising at a rate of 10% annually (and even higher in the past), whereas the prevalence of epilepsy has always remained at population growth levels?

    [MarĂ­a: Well, I think that the idea of a new kind of ASD without the clinical presentation of epilepsy-but subclinical perhaps- is a possible explanation of this.]

    MarĂ­a accepts that there's a correlation between autism and seizures per various studies. She proposes that the reason epilepsy is stable while autism is undergoing an 'epidemic' is that an epidemic-producing environmental trigger results in a type of autism with no epilepsy liability but only a subclinical seizure liability, but still one considerably more prevalent than that of the general population. Note that this new type of autism resulting from an environmental trigger allows for all levels of severity in other autistic traits, but not in regards to the seizure liability. Further analysis can be found below.

  2. Why is the prevalence of CDDS clients without mental retardation (presumably based on IQ testing) going up quickly?

    [MarĂ­a: I think that this is related to diagnosis criteria , so your broader awareness theory is applicable, at least partially.]

  3. Why is the proportion of autistics with epilepsy going down at an annual rate of -5.5%?

    [MarĂ­a: This seems a confirmation of the answer of 1, as you mentioned in your post about.]

    MarĂ­a's answer regarding epilepsy seems to contradict her admission that a drop in mental retardation is consistent with broadening criteria. I should note that mental retardation among CDDS autistics is dropping even faster than epilepsy. Profound mental retardation, for example, is dropping at a rate of about -9% annually. This suggests that, as the criteria is broadened, mental retardation drops a lot in average, but epilepsy does not drop as much. If an environmental trigger is involved, this would mean that the trigger has a higher epilepsy liability than is normal for autism. This would seem to contradict her theory on the first question. Furthermore, I would argue this makes any epidemic-causing trigger theory impossible.

    In reality mental retardation is probably not an accurate equivalence marker for autism. This is because there's probably a large 'shifting misdiagnosis' component that explains much of the drop. But we could come up with other markers in the data and find that it's hard to reconcile drop in those markers due to broadening criteria to drop in epilepsy due to an environmental trigger.

  4. Considering that close to no thimerosal is going into vaccines nowadays, shouldn't the following be true? (1) The number of autistic clients in the CDDS 3-5 age range should be crashing towards zero. (2) All newly diagnosed autistic children would be those vaccinated with thimerosal (via the Flu vaccine, as Sue likes to point out).

    [MarĂ­a: Only if thimerosal is considered a CAUSE. I would wonder if the symptomatic presentation in severity is the same if I consider as a comorbility . Unfortunately the severity if measured by IQ measurements of verbal skills and I think this is wrong. I am wondering in severity in terms of clinical presentation (GI issues, immune/autoimmune, lack of speech, etc) Because the clinical information is scarce, even if now the tests are going to begin to be done, there would be no enough data to compare, only behavioral symptoms. [Regarding flu vaccine:] Not for me. If thimerosal is removed and thinking in the sum up of a lot of individual presentations with multicausal nature of A+B+C+Ă‚…Z we only erased one insult ( an important one for me) but only one. If we consider that the combination is the key and we maintain all the components of the combination-except one-, I think that a decrease Ă‚– BUT a little one in TOTAL numbers- would be seen. I wonder about the severity of symptomatology.]

    Fair enough. Let's assume that thimerosal simply worsens symptoms in average or is only causal in a small portion of cases. I'd propose we should still see an anomaly in the numbers. The trends are shifting without any obvious jumps however.

    Also, it's clear broadening criteria is involved. I don't see the need for a second theory that coincidentally happened to also play a simultaneous role.

  5. By what mechanism does mercury poisoning result in savant skills?

    [MarĂ­a: No known mechanism and very improbable cause for me.]

  6. How does mercury poisoning explain the results of Dawson and Mottron? That is, autistics score higher than the norm in the Raven IQ test. But not only this, the gap between the Weschler and Raven tests is totally the inverse (in the other direction) of what it would be in NTs.

    [MarĂ­a: As I told you in other post, I think that there is a component of visual impairment in the analysis of this.]

  7. How does it explain findings by Happe (2001) that parents of autistics have a "cognitive style" (weak central coherence) that can confer information-processing advantages?

    [MarĂ­a: Well, this idea is in conflict with those from Dawson and Mottron, of the enhanced general perception. I think that the idea of implicit learning and enhanced general perception fits more in the findings in ASD. If think that a combination of genetics + adaptative behavior to overcome sensory integration problems can be part of the explanation of the proposed ideas.]

    Sure. The interpretations are in conflict. The question is more about the test results themselves, not about the interpretations of the authors.

  8. How does mercury poisoning produce significant grey and white matter volume differences in infancy?

    [MarĂ­a: From Martha Herbert White matter is 28 % of total brain volume but contributes 65 % to the volume increase in autism. White matter enlargement is radiate, not deep or sagital. The increased WM volume is in areas that myelinate later. Radiate white matter myelinates late in first year and into second year. Characteristics. Cortical assymetry and model of disordered information processing. There is no enough information to discard some mechanism of environmental insult+genetics in this case.]

    Correct. This question is not meant to discount all possible environmental triggers, just vaccines.

  9. How does mercury poisoning produce increased neuron density and smaller neurons?

    [MarĂ­a: I do not include the link because is long and did not work when I tried. Please let me know if you want the full abstract.]

    Sure. But it would be similar to the question above.

  10. Why do you start chelation therapy without first testing for heavy metal poisoning?

    [MarĂ­a: This is not true for me. Unfortunately, the way I discovered my sonĂ‚´s poisoning has not been studied/reported to be discussed based on scientific reports. There are no reported studies about so it is anecdotic ( although I know of many other children from my country,( from different cities and labs)) that showed the same. I agree that only after careful, safe and adequate testing a procedure of chelation can be evaluated, not as treatment of ASD, but of HM poisoning and not more than this.]

  11. If you have tested your child, did you use a local reputable lab or an internet lab? Did you send a control sample to verify their tests are valid?

    [MarĂ­a: Local reputable lab. 2 control samples- and repeated]

    MarĂ­a obviously does her homework, unlike other known bloggers. She's probably the exception. It would be of interest to know what the results were if she does not mind. I am also curious if the child had symptoms atypical of autism.

  12. Is there controlled evidence that chelation therapy is an effective treatment for autism?

    [MarĂ­a: Chelation for me is treatment for HM poisoning. To propose other thing does not seem ethic for me.]

  13. Is there controlled evidence that chelation therapy is a safe treatment for the duration you're planning to follow it?

    [MarĂ­a: For the particular I choose, there is enough evidence of safe use, at my criteria.]

  14. Are you following medical guidelines as to the proper duration of chelation therapy?

    [MarĂ­a: Totally. Several doctors involved.]

  15. What is the mercury-based genetic model that explains a 60% concordance for classic autism in identical twins, but a much lower concordance (2%-4%) in siblings and fraternal twins?

    [MarĂ­a: This is a strong point to genetics.]

  16. How does mercury poisoning explain a higher proportion of scientists and engineers as close relatives of autistics?

    [MarĂ­a: Again, genetics.]

  17. How does mercury poisoning explain some of the alleles which have been linked to autism? GABA, SERT, etc.

    [MarĂ­a: Genetics/epigenetics/ is very important for me in autism.]

  18. Given that autism is more heritable than personality, intelligence, homosexuality and left-handedness, would you say these other variations in human behavior are, too, caused by pathological environmental triggers such as mercury poisoning?

    [MarĂ­a: Absolutely no.]

    I'd suggest studying them as if they were. That's what's done with autism.

  19. If you believe that autism did not exist before the 1940s, do you also believe that Down's Syndrome did not exist before 1862, that Fragile-X syndrome did not exist before 1943, and that Rett Syndrome did not exist before 1966?

    [MarĂ­a: No. I think that ASD has been with us in genetics terms from long time ago, the same with the other conditions you mentioned. In the case of ASD, I think that before the introduction of vaccines and other potential problems for susceptible children (antibiotics, chemicals, additives, HM) the genetics and immune/autoimmune presentation based on herpes/strep/bacterian/ viruses infections (combined) was the more common. After the introduction of vaccines and antibiotics, etc, to the burden of the immune system, the burden of HM and other allergens was sum up and then the number of ASD and the severity of symptoms in many of them increase in time. Also the increase of chemical burden, environmental pollution and stress in mother/health of mother during pregnacy has impact.]

    So you don't believe autism can occur naturally at current prevalence levels? Why not? What are the limits of natural behavioral variation in humans?

  20. Do you realize that a prevalence of 1 in 166 today (which includes Asperger's syndrome) cannot be compared to a 1970s or 1980s prevalence?

    [MarĂ­a: Yes, diagnosis criteria were different.]

  21. Do you understand why anecdotal accounts do not prove an argument?

    [MarĂ­a: Yes, but the fact that my son is anecdote for science does not imply nothing at his individual level. I have the duty and the right to give him the best treatment I can get. I can not present HIS case as an argument, what is different, or extrapolate situations.]

    Absolutely. You are correct to believe that generalizations may not apply at the individual level, and that's why it's advisable to carry out medical tests. In particular, generalizing "autism=mercury poisoning" is not only erroneous, but dangerous.

  22. (Per Jennifer I believe:) If autistics are unable to excrete mercury, wouldn't regular intake of mercury from the environment be enough to kill autistics over time?

    [MarĂ­a: Well, I think that we must diferentiate the kind and road of exposure-ingestion, inhalation and injection and the kind of compound-in fish, metallic or as thimerosal in the case of mercury. LetĂ‚´s go to accept for a moment that SOME asd children can not excrete heavy metals ( and others). So they bioaccumulate Hg. Some mercury is breathen so we can suppose is metallic- Hg is ubiquous in air and ingresed at 0,3 to 1,5 ug/day for an adult and 0,1 to 0,5 per day for a child (and excreted, given in stool for example for a child 0,01 to 0,05 (maximum, considering a very industrialized zone)-from a report of air quality. However, there can be other routes of exposure that you must check to have a real baseline. First, from when? One question about from me is which is the mechanism of hindering of excretion. Since birth? If we imagine that vaccines are a trigger of this hindering- a possibility- then the situation can be present since HepB vaccine -depending on individual. From fish consumption, is considered to be Hg bonded to proteins in fish. Hg ingested. From vaccines, injected as thimerosal. Therefore there is the problem of increased bolus amount with vaccines and after this the lower daily amount breathened and the occasional amount ingested as fish-if any. Development brings change in all the systems, even in altered systems like in ASD-and it is known that development in many cases involves improvement in autism. How do we know if, depending of the child and the burden to the detox/immune system, IF he /she is HM poisoned, time brings natural excretion? Beyond the Hg from vaccines, how do we know at an individual level the impact in different organs and system of the bioaccumulation not only of Hg but also of Pb, Al, Cd etc? How do we know how each child can manage in time the supposed toxic load he/she can have?]

    This is more of an issue with thimerosal. You might have a point with other types of exposure. With vaccines, I think you get a total of 130 micrograms of mercury. From your numbers, you'd get 130 micrograms in 1-4 years just from a normal environment, assuming you can't excrete. So you either can't excrete, and your body is always accumulating mercury making you more and more sick. Or you can excrete, and your body easily gets rid of all the mercury from the thimerosal in short order. People with dental amalgams are able to excrete about 30 micrograms per day I believe.

  23. Why are the following symptoms of heavy metal poisoning not characteristic of autism? Headaches, cold hands and feet, vertigo, inability to focus vision, joint and muscle pains, weak pulse, hard pulse, bleeding gums, blisters, tooth ache, jaw inflammation, metallic taste in mouth, loosening of teeth, persistent cough, irregular breathing, swollen lymph nodes in the neck, subnormal temperature, excessive perspiration, chest pain, changes in blood pressure, etc.

    [MarĂ­a: My question is how a child that is not verbal /low comunication skills can communicate many of this kind of symptoms-except the obvious for the arent:loosening of teeth, cold hands and feet and excessive perspiration? Inability to focus vision? Can not be related to lack of eye contact? Joint and muscle pains? Can not be related to hypotonia? Irregular breathing? Has been reported in autism-Dental problems have been reported in ASD children. What defines the characteristics of autism?DSMIV does not include anything about other things than behavior.]

    The reason I listed those is that I don't believe they are characteristic in autistic adults. The characteristics of mercury poisoning are such that the person would not appear healthy. This cannot be generalized to autistics. And no, lack of eye contact is not related to inability to focus - trust me.

Saturday, March 11, 2006

Open Letter to Journal of Physicians and Surgeons

Dear Editor:

I recently had the opportunity to review the paper titled Early Downward Trends in Neurodevelopmental Disorders Following Removal of Thimerosal-Containing Vaccines published in your Journal in the Spring of 2006.

The purpose of this communication is not to point out methodological flaws in the paper's findings and conclusions. The flaws are already well known, and this will likely be addressed in the scientific literature in due time.

I am writing to point out that there exist significant factual errors presented in the paper, due mostly to demonstrably misleading use of certain terminology. The magnitude of these errors is such that I have no choice but to urge you to retract this paper at your earliest convenience.

In particular, the following statements referring to CDDS trends are at issue:


Significant decreasing trends in newly diagnosed NDs...

Trends in New Cases of Autism entered into the CDDS...through Oct. 4, 2005 is significantly decreasing...


It is not clear how the authors define or calculate "newly diagnosed NDs" and "New Cases" given that no terminology section is provided in the paper. Nevertheless, Figure 3 in combination with a quick look at the publicly available CDDS data shows how the authors calculate "New Cases". Evidently, it is defined by the authors as the difference between the number of autistic clients in one quarter and the number of autistic clients in the previous quarter.

The terms "newly diagnosed NDs" and "New Cases" clearly can only be interpreted by your readers as meaning "individuals who have just been diagnosed". This terminology is erroneous at best, and purposefully misleading at worst. The number of clients with a new diagnosis cannot be determined by substracting the numbers from one quarter minus the numbers from the previous quarter, as explained by CDDS itself in its document titled Data Interpretation Considerations and Limitations:

Differences in the numbers from quarter to quarter reflect the net changes between individuals who are newly reported (i.e., included in the later report but not included in the earlier report) and individuals who dropped out (i.e., included in the earlier report but no longer included in the later report).


The error of assuming that quarterly differences represent "new cases" is so common that the CDDS has obviously gone out of its way to clarify it.

This is not a minor error that can be brushed aside. CDDS clients can go from a status of active to a status of inactive or closed when they move out of the state, die, are no longer found to be eligible, or choose to discontinue pursuing eligibility. Given the increasing population of autistic clients in the CDDS, the importance of these considerations cannot be overstated.

Additionally, the fact that the population of autistic clients in the CDDS continues to grow at an annual rate of 10.7% as of Dec. 2005 (a rate much higher than the general population growth in the state of California) shows that an actual decrease in the number of newly diagnosed cases is not likely occurring. The population is simply starting to level off.

Once again, given the magnitude of this error and the fact that CDDS itself has tried to prevent this exact error from occurring, I believe the only appropriate course of action is to retract this paper immediately. I trust that given your reputation as a peer-reviewed Journal, you will agree.

If you have any doubts about the facts I have presented, I suggest you contact CDDS directly and discuss the issue with them.

Sincerely,

Joseph

P.S. I will copy CDDS, and will also be blogging this.

Friday, March 10, 2006

New Way to Explain Why an Epidemic Cannot be Inferred

We've all heard the argument posted at GenerationRescue's site which is often repeated by those who claim there's an autism epidemic:

The incidence of autism has increased from 1 in 10,000 in the 1970s to 1 in 150 today, an increase of over 6,000%. Many more children have been diagnosed with other neurodevelopmental disorders all considered to be on the same spectrum including Asperger's, ADHD/ADD, speech delay, and many other developmental delays and learning disabilities.


The refutation of this argument is well-known and straight forward: The prevalence of 1 in 150 includes Asperger's syndrome (no speech delay) whereas the definition of autism in the 1970s did not. Another important point is that these numbers represent prevalence, not incidence. In general, a formal way to refute it is to point out that the groups are not equivalent.

Pointing out that the groups are not equivalent means that the prevalence of traits in one group is not comparable to that of the other group. For example, in one group, prevalence of speech delay is much higher than in the other. Prevalence of mental retardation (according to Weschler) is probably much higher in the 1970s group.

In simpler terms, you can't compare the prevalence of apples to the prevalence of oranges, and then claim that the incidence of fruits has changed.

General application of this principle

I believe it's possible to make this argument from quarter to quarter, and from year to year. For example, the group of autistics in the CDDS in December 2002 is not equivalent to the group of autistics in the CDDS in December 2003. And this is demonstrably true. I'll list four groups below indicating trait proportions; namely, incidence of epilepsy and profound mental retardation (PMR) among autistics:

Group 1 - Dec. 2002: Epilepsy: 7.80%, PMR: 3.23%
Group 2 - Dec. 2003: Epilepsy: 7.42%, PMR: 2.86%
Group 3 - Dec. 2004: Epilepsy: 7.10%, PMR: 2.59%
Group 4 - Dec. 2005: Epilepsy: 6.73%, PMR: 2.35%

Not only is it crystal clear that these 4 groups are not equivalent, it would appear that autistics in the CDDS keep getting higher and higher functioning with every year that passes, with no end in sight. If this continues indefinitely, the CDDS will have to rename the 'Autism' category to 'NT'.

Conclusion

Claiming that the incidence of autism is increasing based on CDDS prevalence data suffers from a critical flaw. No such conclusion can be derived from the data, given that the group of autistics in one quarter is not equivalent to the group of autistics the next quarter.

Thursday, March 09, 2006

Regional Differences Not Explained By Environmental Factors

In a posting titled CDDS Data 101 I previously argued that differences in prevalence across Regional Centers in California may be explained by a 'broadening criteria' theory, i.e. differences in pediatrician and psychiatrist culture, different levels of awareness in the part of parents and school officials, misdiagnoses, etc. I cited evidence showing that some regional centers with low autism prevalence have a higher rate of increase of autistic clients over time than other regional centers that already have a high prevalence of autism. That is, prevalence in some regional centers is catching up to that of regional centers typically located in areas with high degrees of urbanization.

In this posting I will analyze the data in a different way. I will show that while autism rates vary widely from region to region, and are typically well correlated with degree of urbanization, the same cannot be said of mental retardation.

As usual, the analysis will be as non-technical as possible. The reader is encouraged to download the data, verify my claims, and inform me of any errors in the comments section of this post.

The importance of this analysis rests in testing the hypothesis that neurodevelopmental disorders may be correlated to factors such as environmental pollution, including exposure to environmental lead and mercury.

To carry out the analysis, I will use epilepsy as a baseline. This is because, as I've noted, diagnoses of epilepsy appear to be stable in the CDDS data. Their growth pattern closely matches population growth in the state of California. This suggests that diagnoses of epilepsy are more objective and thus not subject to error such as 'broadening criteria' or 'shifting misdiagnoses'. So a couple basic assumptions of this analysis are the following: (1) Epilepsy is not undergoing an epidemic, per CDDS data; (2) Epilepsy is uniformly diagnosed across regions, and differences in awareness in relation to epilepsy are negligible.


Terminology

Allow me to define a couple of terms before proceeding:

Autism Index.- Number of autistic clients divided by number of clients with epilepsy.

MR Index.- Number of clients with severe or profound mental retardation divided by number of clients with epilepsy.

I will use these two indexes as an indication of the prevalence of autism and mental retardation in a Regional Center. (It would be much more difficult to gather data on the population served by each Regional Center, and that's why I use this method).

Locations & Map

The CDDS has a Directory of Regional Centers which gives the address of each Regional Center. Additionally, they provide a map of the areas served by each regional center.

Data

I have compiled data on Autism Index and MR Index for all regional centers. This data is calculated from numbers published in the CDDS Quarterly Client Characteristics Report for December, 2005.

Regional CenterAutism IndexMR Index
Alta California0.590.57
Central Valley0.320.60
East Bay0.760.64
East LA1.340.73
Frank D. Lanterman1.370.83
Golden Gate0.570.81
Harbor1.460.85
Inland0.540.76
Kern0.490.70
North Bay0.590.73
North LA1.500.61
Orange County0.840.75
San Andreas0.850.62
San Diego0.620.72
Redwood Coast0.400.45
San Gabriel-Pomona0.720.85
South Central LA0.810.80
Tri-Counties0.880.56
Valley Mountain0.620.64
Westside1.610.68
Far Northern0.540.56


You will notice that the range of variance of MR Index is 0.45-0.85 (a factor of 1.89), whereas the range of variance of Autism Index is 0.32-1.61 (a factor of 5.03).

The difference in autism rates between Central Valley and Westside is remarkable. To put it in perspective, this gap is equivalent to the 'autism epidemic' in U.S. schools between 1995 and 2003. Interestingly, the MR Indexes in Westide and Central Valley are very similar.

Is there a correlation between autism and MR?

Some areas with a low Autism Index also have a low MR Index. This is the case of Alta California, Redwood Coast and Far Northern. But the pattern breaks if you look at Golden Gate, Inland, Kern and North Bay, all centers with a low Autism Index but moderate to high MR Index.

Some centers with a high Autism Index also have a relatively high MR Index. This is the case of East LA, Frank D. Lanterman and Harbor. But again, the pattern breaks if you look at North LA or Westside, which have the two highest Autism Indexes, but appear to have below-average MR Indexes.

In general, it's hard to discern a pattern of correlation between Autism Index and MR Index. I'll leave it for the reader to graph the table and look for a pattern.

Shouldn't we expect to see an inverse correlation? To some extent, yes. In the time-based state-wide data, you will see an inverse correlation, but it varies little (about -0.2% MR Index variation for every 1% increase in number of autistic clients). So this shouldn't throw off the data too much. You do see some of it in the two Regional Centers with the highest Autism Indexes: Westside and North LA. But there appear to be various random and conflicting factors pulling the numbers in different directions, such as socio-economics and cultural differences (e.g. how severe a condition must be to use the services of a Regional Center for something such as autism or MR, compared to something more objectively diagnosed such as epilepsy).

Is there a correlation between MR and degree of urbanization?

In the MR Index range of 0.4-0.59, we find Alta California (Sacramento area), Redwood Coast, Tri-Counties (Santa Barbara) and Far Northern. One is a densely populated area, one is a moderately populated area, and two are sparsely populated. This can easily be explained as a difference in awareness/culture/resources. If an urbanization-dependent environmental factor is at play, one would have to wonder why it's not in effect in Sacramento.

In the MR Index range of 0.6-0.69 range we find Central Valley, East Bay, North LA, San Andreas, Valley Mountain and West Side. Central Valley (Fresno) and San Andreas (Santa Cruz) are moderately populated areas. The same is likely true of Valley Mountain. East Bay (Silicon Valley) is heavily populated as are Westside (Culver City in LA) and North LA.

In the MR Index range of 0.7-0.85 and above, we find most of the Regional Centers. They tend to be heavily populated, but we find a couple of anomalies. For example, Inland appears to be very sparsely populated. Kern would also appear to be much less densely populated that the nearby LA area, where many locations have a lower MR Index.

In general, there's no clear-cut correlation between degree of urbanization and MR Index. Differences are small and may be easily explained by various random regional factors. Most of the Regional Centers have an MR Index in the range of 0.7-0.85, a very small range of variance.

Conclusions

[Note: For an updated regional analysis, see Regional Differences and Quarterly Growth Due to Two Factors.]

If we compare Autism Index in Westside (LA area) vs. Central Valley (Fresno), we see that there's a difference in prevalence of about 500%. But we can also conclude from the data that autistics in Westside have a much lower prevalence of epilepsy and MR than do those in Central Valley. In other words, the groups are not equivalent. If we assume that MR and epilepsy are good equivalence baselines, given that MR Indexes are the same in both areas, I'd like to point out, alarmingly, that Central Valley (Fresno) has "missed" about 80% of its "train wrecks" compared to Westside (using the wording of a known foe of autistics everywhere).

What causes the groups not to be equivalent? The main cause, evidently, is that autism is a spectrum and there is no objective medical test for autism. Other possibilities: Awareness, misdiagnoses, financial resources, psychiatrist and pediatrician culture, etc.

At this point it should be clear to the reader that autism diagnostic frequency is region-dependent, but that the diagnostic threshold is not equivalent across regions. This in itself does not prove that an environmental factor is not involved at all. MR is fairly stable in relation to epilepsy, but this could be explained by pointing out that an environmental factor might increase the prevalence of all 3 conditions (epilepsy, MR and autism), and act in conjunction with autism criteria discrepancies.

I propose we can discount this hypothesis, however, based on the stability of diagnoses of epilepsy in the state-wide time-based data. Furthermore, one Italian study has shown that status epilepticus is not correlated to degree of urbanization [ref].

Showing that MR varies little from region to region and is not correlated in any significant way with degree of urbanization completely undermines the observation that autism is. That is, if actual autism incidence depended on degree of urbanization, you would expect MR and epilepsy to have a clear dependency on degree of urbanization as well.

In other words, once we take into account the fact that it is the definition of autism which changes from region to region, and not the actual incidence of equally severe cases, then the correlation to degree of urbanization is better explained (or only explained) by other types of factors: Better knowledge, more financial resources, etc.

While it is possible to pretty much discount any urbanization-dependent environmental factors with this analysis, we have not ruled out random region-dependent factors that may affect prevalence or incidence, such as socio-economics, ethnicity and genetic homogeneity. They would appear to have little effect, however. Factors that are not region-dependent are not within the scope of this analysis but they have been addressed before.

Tuesday, March 07, 2006

Mercury FABNAQ

I've compiled a list of Frequently Asked But Never Answered Questions (FABNAQ) about the "autism=mercury poisoning" hypothesis. The following questions don't have a logical, scientifically sound, consistent answer from the mercury camp.

Prevalence data


  • Considering that the prevalence of epilepsy among autistics is known to be an order of magnitude higher that that of the general population, why is the CDDS-based prevalence of autism rising at a rate of 10% annually (and even higher in the past), whereas the prevalence of epilepsy has always remained at population growth levels?


    [John Best Jr. has answered that perhaps epilepsy is not being diagnosed in autistics who have epilepsy. But it's clear in the CDDS data that dual diagnoses are common. He then suggested that mercury does not have a seizure liablity. This, of course, is not consistent with what is known about autism. Plus I've also argued before that an environmental trigger without a seizure liability does not match the numbers. Finally, John asserted that autism and epilepsy are totally unrelated.]


  • Why is the prevalence of CDDS clients without mental retardation (presumably based on IQ testing) going up quickly?

  • Why is the proportion of autistics with epilepsy going down at an annual rate of -5.5%?

  • Why is the proportion of autistics with mental retardation going down at a comparable rate?

  • Why do you continue to claim that the number of "new cases" or "newly diagnosed cases" of autism is dropping in California, considering that the CDDS says that they don't provide data on new cases? Isn't it intellectually dishonest to continue to do so?

    [I'm not aware of any proponent of the mercury hypothesis having addressed this crucial objection. If you know what the rebuttal consists of, please post it in the comments section.]


  • Considering that close to no thimerosal is going into vaccines nowadays, shouldn't the following be true? (1) The number of autistic clients in the CDDS 3-5 age range should be crashing towards zero. (2) All newly diagnosed autistic children would be those vaccinated with thimerosal (via the Flu vaccine, as Sue likes to point out).

  • Use of thimerosal has been eliminated or drastically reduced in several countries, including Canada, Denmark and Sweden. Why has no country reported a decrease in he prevalence of autism following these actions?



Cognitive findings


  • By what mechanism does mercury poisoning result in savant skills?

  • How does mercury poisoning explain the results of Dawson and Mottron? That is, autistics score higher than the norm in the Raven IQ test. But not only this, the gap between the Weschler and Raven tests is totally the inverse (in the other direction) of what it would be in NTs.


    [John Best Jr. proposes that the same gene that results in a mercury excretion liability also produces high IQ. This of course would mean that the mercury spares certain types of cognition. While JB Jr. concedes that genetics could account for cognitive advantages, he does not concede that it's enough to account for socio-linguistic deficits.]


  • How does it explain findings by Happe (2001) that parents of autistics have a "cognitive style" (weak central coherence) that can confer information-processing advantages?



Neurobiological findings

  • How does mercury poisoning produce significant grey and white matter volume differences in infancy?


    [The usual answer to these kinds of questions is that "corrupt scientists" are in on the conspiracy led by the CDC.]


  • How does mercury poisoning produce larger brain mass and size?

  • How does mercury poisoning produce increased neuron density and smaller neurons?


Chelation therapy


  • Why do you start chelation therapy without first testing for heavy metal poisoning?

  • If you have tested your child, did you use a local reputable lab or an internet lab? Did you send a control sample to verify their tests are valid?

  • Is there controlled evidence that chelation therapy is an effective treatment for autism?

  • Is there controlled evidence that chelation therapy is a safe treatment for the duration you're planning to follow it?

  • Are you following medical guidelines as to the proper duration of chelation therapy?



Genetics


  • What is the mercury-based genetic model that explains a 60% concordance for classic autism in identical twins, but a much lower concordance (2%-4%) in siblings and fraternal twins?

  • How does mercury poisoning explain a higher proportion of scientists and engineers as close relatives of autistics?

  • Why do you propose that autism just cannot be simply genetic, while autism-like conditions such as Fragile-X, Rett Syndrome and Tuberous Sclerosis obviously can?

  • How does mercury poisoning explain some of the alleles which have been linked to autism? GABA, SERT, etc.

  • Given that autism is more heritable than personality, intelligence, homosexuality and left-handedness, would you say these other variations in human behavior are, too, caused by pathological environmental triggers such as mercury poisoning?



Flawed logic


  • If you believe that autism did not exist before the 1940s, do you also believe that Down's Syndrome did not exist before 1862, that Fragile-X syndrome did not exist before 1943, and that Rett Syndrome did not exist before 1966?


    [JB Jr. admits that Rett Syndrome was likely misdiagnosed as autism before 1966. He further admits that Rett Syndrome might have been called brain damage or birth defect before the 1940s. But when asked if autism could also have been called brain damage or birth defect before the 1940s, he proclaims this is impossible. Why? Because autism did not exist, as Kanner was the first to see it.]



  • Do you realize that a prevalence of 1 in 166 today (which includes Asperger's syndrome) cannot be compared to a 1970s or 1980s prevalence?

  • Do you understand why anecdotal accounts do not prove an argument?



Characteristics of true heavy metal toxicity


  • (Per Jennifer I believe:) If autistics are unable to excrete mercury, wouldn't regular intake of mercury from the environment be enough to kill autistics over time?

  • Why are the following symptoms of heavy metal poisoning not characteristic of autism? Headaches, cold hands and feet, vertigo, inability to focus vision, joint and muscle pains, weak pulse, hard pulse, bleeding gums, blisters, tooth ache, jaw inflammation, metallic taste in mouth, loosening of teeth, persistent cough, irregular breathing, swollen lymph nodes in the neck, subnormal temperature, excessive perspiration, chest pain, changes in blood pressure, etc.

Sunday, March 05, 2006

Do Co-morbidities Prove Pathology?

Kevin Leitch recently posted a comment he had seen in the EOHarm list indicating the following: "Which physical symptoms should be ignored in children with [alleged] mercury-induced autism, so that their parents can “celebrate their neurodiversity”?" This is followed by a list of co-morbidities, some recognized as commonly occuring with autism, most of them inconclussive or questionable. It was of course pointed out that this was an intellectually dishonest misrepresentation of what the neurodiversity philosophy is about. The trivial flaw in the question has been noted repeatedly: Evidently, you ought not to ignore these co-morbidities.

Let me provide a less disputed list of co-morbidities of autism. That is, while we can't generalize and say that all autistics have these medical liabilities, it would appear that they are far more prevalent among autistics than in the general population:


  • Allergies
  • Gastro-intestinal problems
  • Seizures and epilepsy
  • Sleep problems
  • Self-injury (SIB)
  • Upper-respiratory problems


It's not entirely clear what the thought process that led to this argument looks like, but I've done my best to attempt to generalize it below:

If a phenotype (an appearance or behavior pattern) is associated with a relatively high prevalence of recognized medical liabilities, then the phenotype should not be characterized as a 'way of being'. The phenotype must then be considered a disease that must be erradicated and cured as a whole. Treating only the co-morbidities is insufficient.


Note that it's not just one person who makes an argument along these lines. Other mercury parents apparently jumped on the bandwagon according to Kevin. So while I shouldn't generalize, for the purposes of narration, I'm going to assume that "mercury parents" have this position.

In order to determine the viability of this argument, which appears reasonable on the surface, I have decided to test its plausibility on genotypes or phenotypes other than autism.

The Ashkenazi Jewish Population

A number of significant (usually deadly) diseases are considerably more prevalent among the Ashkenazi Jewish Population:


  • Bloom's Syndrome
  • Canavan Disease
  • Familial Dysautonomia
  • Fanconia Anemia
  • Gaucher Disease
  • Mucolipidosis IV
  • Niemann-Pick Disease
  • Tay-Sachs Disease
  • Torsion Dystonia
  • Crohn's Disease


Of these, Tay-Sachs is the best known. Death usually occurs by three to five years of life due to pneumonia or other infections. Interestingly, there's some controversial research which links Tay-Sachs and other genetic diseases to higher IQ in Ashkenazi Jews [ref].

So is being Jewish a disease that must be erradicated and cured? Unless the reader is a Neo-Nazi, I'd expect the reader to disagree. But I think it's important to illustrate the correct use of the terminology with a couple of examples:


Correct: This child suffers from Crohn's Disease. He ought to be treated.

Incorrect: This child suffers from being Jewish. Let's remove his Judaism. And while we're at it, let's device a genetic test to prevent Jewish people from being born.


Historical sociologist Shelley Reuter says that the notion of a Jewish disease is flawed since “there is no DNA sequence common and exclusive to all Jews.” Guess what? Neither is there one for all autistics.

Homosexuality

I anticipated that some readers might question the last analogy on the grounds that we should not compare autism to a race. (I might someday argue why that is totally valid in a different post). Homosexuality is the natural choice for a follow-up analogy, given that it has been described as a mental disorder.

Homosexuality used to be listed in the DSM-II, which was modified in 1973 to exclude it. This action resulted from the protests of gay activits who believed that homosexuality was not a disorder at all, but simply a 'way of being' to be tolerated and respected as any other way of being. Similar activism in relation to other phenotypes classified as disorders has occurred since.

In a similar fashion to the mercury parents, some die-hard psychiatrists and semi-professionals still argue that homosexuality should be considered a disorder and treated on the basis of its medical liabilities [ref]:


  • Classical STDs
  • Enteric diseases (Gay bowel disease, Hepatatis, etc.)
  • Trauma to various body parts
  • And of course, AIDS


Some of these are quite serious. But even so, it is not correct to say that an AIDS sufferer is a person who suffers from homosexuality.

Others argue that the cost of homosexuality is alarming, both in monetary terms and social terms [ref]. What does that remind me of?

As to curing homosexuality, there are a number of behavioral approaches still in use today. Reparative therapy claims a success rate of 30% to 70%, apparently even better to that of ABA. And as you might expect, there exist people called "ex-gay" who claim to be recovered from homosexuality. You will also find some talk on the internet to the effect that homosexuality might be caused by a 'chemical imbalance' (a favorite of the drug industry) and thus may be treated with drugs.

One of the pioneers of behavioral interventions for homosexuality and transexuality was, you guessed it, O. Ivar Lovaas [ref]. That's not surprising. After all, he says children "don't have the right to act bizarrely".

Left-handedness

I know there's at least one mercury parent, John Best Jr., who actually does believe that homosexuality is a disorder that must be cured. For him and others like him here is a less controversial condition: left-handedness.

Some of the liabilities of left-handedness (and I must warn that these are controversial) are:


  • Higher incidence of sexual offenses
  • Accident proneness
  • Proneness to alcoholism
  • Allergies
  • Immune disorders
  • Lower life expectancy


Still, left-handed people are proud of their genetic heritage, are opposed to continued efforts to make them switch hands, widely reject the 'person with left-handedness' terminology, and even believe that left-handedness provides them with cognitive advantages. All they ask is for a bit of accomodation so they are able to use their left hand in various social and educational settings.

Giftedness

Here's a strange type of "abnormal" which many people would like to be. It's a lot like the tall stature phenotype or the really low body fat phenotype. We all know that giftedness must have some advantages, in some cases including savantism. Genetically, of course, given its low prevalence, it's not surprising that it comes with a number of liabilities:


  • Allergies
  • Myopia
  • Clinical depression
  • Perfectionism
  • Isolation/Introversion
  • Underachievement
  • Hypersensitivity (Sensory overload)


Is giftedness a disorder? It's not considered as such at present. But psychiatrists and school officials, in their never ending quest to label every single person in the planet as brain diseased, appear to be on the brink of classifying it as such [ref][ref].

Summary

Bigotry is alive and well. Treat the co-morbidities. Don't treat the autism.

Thursday, March 02, 2006

CDDS Data 101

Recently there have been many reports indicating that the number of autism cases is dropping [ref]. I will show that this conclusion results from a haphazard interpretation of the data and misleading terminology.

I will base this simple non-technical analysis on the California DDS (CDDS) data, readily available online. The reader is encouraged to download the data and verify my claims. The numbers are quite clear and you don't need to be a mathematician to interpret them.

Caveat: The CDDS does not recommend using this data to determine prevalence trends, but I will use it to point out flaws in interpretations that have used this data for such a purpose in the past.

Let's agree on some terminology first:

Number of autistic clients.- This is the number of persons with a diagnosis of autism in the CDDS system in any given quarter. It could be taken as a very rough indication of the autistic population in the state of California below the age of 18. [Errata: The CDDS does keep clients older than 18, so this could be taken as a reflection of the autistic population in the state].

Rate of increase.- This is obtained by subtracting the number of autistic clients in one quarter minus the number of autistic clients in the previous quarter. This is equivalent to the number of autistic clients who enter the CDDS system minus the number of autistic clients who leave the CDDS system in any given quarter. (I also sometimes refer to the annual rate of increase).

New cases.- This is the number of autistic clients who enter the CDDS system in any given quarter. Note that the CDDS does not provide data on new cases as defined here. The term "new cases" has often been used to describe "rate of increase" (defined above) and this is where much of the confusion stems from.

So has there been a drop in cases of autism based on CDDS data? Let's see. There were 28,724 autistic clients in Sep. 2005 and 29,424 autistic clients in Dec. 2005. Does it look like a drop? There were even less a year before (Dec. 2004): 26,576. That is, in the last year, the autistic population in the CDDS has increased by 2,848. This is an increase of 10.72%.

Is 10.72% a big increase in the autistic population? Absolutely. Annual population growth in the state of California is roughly 1%. Any growth in number of clients above that level is indicative of an increase in prevalence.

Don't buy that? Let's see if it works with epilepsy. There were 37,301 clients with epilepsy in Dec. 2005, and 37,076 clients with epilepsy in Dec. 2004. That's a rate of increase of 225 clients, or 0.6%. This is even somewhat lower than annual population growth. (BTW, a true increase in autism prevalence would be expected to be matched by an increase in the prevalence of epilepsy).

Can the rate of increase remain at 10.72% indefinitely? This is impossible. If it did, the autistic population would double every 7 years and would reach 20 million (the total population of the state) in about a century and a half. This rate needs to go down to about 1% eventually, and there are indications that it is already starting to go down. It will be obvious when it reaches this level, as you will hear many reports to the effect that autism prevalence has finally leveled off.

So what do people mean when they say that the number of new cases is dropping? What they mean is precisely this: The rate of increase is dropping, which is totally unremarkable as explained above. The problem is that they say "new cases" instead of "rate of increase" and this is completely misleading. But don't take my word for it. Go and check the data against this common claim: "The number of new cases of professionally diagnosed full syndrome DSM IV autism entering California's developmental services system declined from 734 new cases during the second quarter of 2005 (April through June) to 678 new cases during the just completed third quarter of 2005 (July through September), a 7 1/2% decline in one quarter" [ref].

Predictions of Thimerosal Theory

Some proponents of the Thimerosal Theory of Autism maintain that autism did not exist before the 1930s. If their theory is correct, when thimerosal is completely removed from vaccines the quarterly rate of increase should become negative immediately. And in about 18 years, the number of autistic clients in the CDDS should become zero. [Errata: Only the number of autistic minors in the system should become zero after that time. A quicker prediction is that the number of autistic clients in the 3-5 age range should become zero within 4 years of thimerosal removal. It is clear this is not happening.].

Even those who are not so forceful about this theory do maintain that the "autism epidemic" is largely attributable to Thimerosal. Still, the quarterly rate of increase should become negative, and the number of autistic clients in the CDDS should drop to early 90s or 80s levels in about 18 years.

Predictions of the Broader Criteria Theory

This theory says that our conception of what autism is has been broadening and that parent and pediatrician awareness about autism is increasing. Awareness and criteria will have to stop broadening at some point, since clearly not everyone is autistic. So according to this theory, the quarterly rate of increase should gradually drop until it matches population growth in the state of California. And the number of autistic clients should remain at high levels but only grow slowly.

Based on the trend I can see on graphs now, I would predict the autistic population in California will level off in about 2016.

Evidence in favor of the Broader Criteria Theory

In the movie Rain Man (1988), Raymond Bobbit is referred to as "high functioning" a couple times. Today, it's common for Rain Man to be referred to as a "relatively severe case". It is clear that our conception of what autism is has changed.

If a movie doesn't do it for you, consider twin studies. In twin studies, it's obvious that higher concordance will be found the broader the definition of autism is. (That is, the more identical you expect twins to be, the less concordance you will report). In the first twin study on autism by Folstein-Rutter (1977), concordance for autism was found to be 36% for identical twins (0% for fraternal). But they also found that concordance for "cognitive disorder" was 82% in identical twins (10% for fraternal). Now consider that at least 3 modern studies have found a "classic autism" concordance of 60%-95.7% for identical twins. This is fairly good evidence that researchers' conceptions of what autism is have broadened - never mind parent and pediatrician awareness.

Isn't it also remarkable that as the dosage of thimerosal has increased, autism has become more and more heritable?

Further evidence can be found in the California data itself. As I noted, the rate of increase in epilepsy is 0.6% whereas the current rate of increase in autism is 10.7%. It is known that a certain portion of autistics suffer from epilepsy. (Epilepsy is also a favorite of the Thimerosal camp when they argue that autism is pathological). So if there is a real increase in the prevalence of autism, you would expect to see a matching increase in the prevalence of epilepsy.

The CDDS does provide data on autistics with epilepsy. There were 1,886 in Dec. 2004 and 1,979 in Dec. 2005. This is an increase of 93 clients, or 4.9% in the last year. This is a lot lower than the 10.7% rate of increase for autism. (Why isn't it around 1%? Probably because more and more clients with epilepsy are recognized as also being autistic).

The number of autistic clients with no mental retardation was 16,448 in Dec. 2004, and 18,708 in Dec. 2005. So the annual rate of increase of autistics with no MR is 2260 or 13.74%. This is considerably higher than the 10.7% annual rate of increase for all autistic clients.

So there you have it. More and more autistics are not mentally retarded (presumably based on IQ testing - which incidentally is likely flawed). And less and less autistics suffer from a co-morbidity of epilepsy. Need more evidence?

The regional data is also interesting. We would expect to find that in places of high prevalence, awareness and broadening criteria is leveling off more quickly than in the state as a whole. The Westside regional center appears to be a place of high prevalence (over 30% of all clients are autistic). You will find that the annual rate of increase is about 8.3% there, lower than the 10.7% for the state. In contrast, some places (not all) where prevalence hasn't caught up should have a higher rate of increase. You will find that the Inland regional center, for example, has an annual rate of increase of 15.17%, much higher than the 10.7%. It's as if Inland is catching up to Westside - like going back in time. (Professional's conceptions of autism will probably always differ a little from region to region, however).

In conclusion, it's not correct to say that we just don't know whether thimerosal causes autism. The truth is that the weight of the evidence is overwhelmingly on the side of the broadening criteria theory.

Summary


  • The "new cases" terminology is misleading, as it assumes that the rate of increase in the number of clients is the same as the number of clients who enter the system.
  • Current annual increase in the number of autistic clients in the CDDS is 10.7%, which is much higher than population growth in the state of California.
  • The Broadening Criteria theory predicts that the rate of increase should drop gradually to around 1%.
  • The Thimerosal theory predicts that the rate of increase should become negative, and the number of autistic clients drop every quarter until it becomes zero (or at least very low).
  • The data is overwhelmingly in favor of the Broadening Criteria theory.

Wednesday, March 01, 2006

Placebo Effects In Autism

Anecdotes of benefit from the latest "miracle cure" for autism abound. Early on I realized these anecdotes need to be taken with some skepticism. Parents desperate to cure their children attempt all kinds of therapies all the time; naturally, when their children cross some developmental milestone, the improvement is attributed to the latest of the therapies that was attempted.

The issue is not just one of unproven effectiveness, but also one of unknown adverse effects. Even some treatments whose effectiveness may be backed up by placebo-controlled double-blind studies (B6/Magnesium, L-carnosine, Risperidone, etc.) may have short- or long-term adverse effects which are not well understood. The case of Ritalin should be taken into account as an example: There are now reasons to believe it may have cardiovascular adverse effects, psychiatric adverse effects, and is possibly a carcinogenic.

Certain treatments are just believed to be effective and touted as "evidence based" when in fact the evidence is somewhat questionable. This is the case of ABA, a very popular treatment whose effectiveness is taken for granted. But the initial study by Lovaas did not use a randomized control group, and evaluators were not blind to treatment. Follow-up studies on the same group of children of course suffer from the same methodological flaws introduced early on and new results may have been affected by parent perceptions following the initial treatment. The Lovaas findings have been criticized on methodological grounds on several occasions [ref][ref][ref]. If similar evidence were to be presented to support, say, the GFCF diet, it would be immediately qualified as nearly useless.

Michelle Dawson has, as everyone knows, criticized ABA on ethical grounds [ref]. Other adult autistics have expressed concerns (I'm being gentle) about ABA, such as the treatment of children as if they were trained seals [ref][ref]. Aversives are often criticized, but the usual response is that they are no longer used. (The early Lovaas study did rely on aversives, BTW). Some cases of PTSD have been reported following treatment [ref][ref]. One of my own concerns is that effects on late adolescence and adulthood are unknown.

I do believe there's probably an ideal educational approach that will work great for autistic children, a different approach to that used on NT children, but it's not at all clear ABA is that approach.

Parents often do indicate they see some improvement in their children while they undergo ABA. But you will probably find as many parents touting the GFCF diet or chelation therapy, both unproven treatment methods.

It is necessary to recognize that autistic children developing is not surprising. They just don't do it in the expected time frame. Autism is not a degenerative disease like Parkinson's or Alzheimer's, which ultimately end up killing the affected individual. When a neurotypical child learns to walk, do you believe the child "recovered" from a disability?

To put everything in perspective, I think it's helpful to look at what some placebo-controlled studies have found in relation to the placebo effect in autism.


  1. Sandler AD, et al. Lack of Benefit of a Single Dose of Synthetic Human Secretin in the Treatment of Autism and Pervasive Developmental Disorder (1999).

    This study used standard behavioral measures, including the Autism Behavior Checklist, to evaluate children before and after administration of Secretin or Placebo. The initial score of the Placebo group was 63.2 (higher score means "more autistic"). After only 4 weeks, the score on the Placebo group was reduced by 17.8 points (compared to 8.9 in the Secretin group).

    But what's most surprising, 69% of the parents of the children in this study said they remained interested in Secretin as a treatment for their children. I should emphasize that a large number of controlled studies have shown that Secretin is about as beneficial in the treatment of autism as drinking bottled water.

  2. Coplan J, et al. Children with autistic spectrum disorders. II: parents are unable to distinguish secretin from placebo under double-blind conditions. (2003)

    This study demonstrated that parents were unable to distinguish the effects of Placebo from those of Secretin, using a swapping technique. But the surprising thing is that 77% of families reported the treatment was beneficial, only 6% saw no improvement, and 6% offered no guess.

  3. Adams J, et al. Vitamin, mineral supplements benefit people with autism.

    This online paper is in preparation of a study that looks at the effectiveness of a multivitamin supplement compared to a Placebo. Parents are asked to rate their children's improvement after 3 months as follows: On a scale of 1-7, 1=much worse; 2=worse; 3=slightly worse; 4=same; 5=slightly better; 6=better; 7=much better.

    On the "Sociability" category, parents reported scores of 5.1 for Placebo and 5.3 for the supplement. On the "Expressive language" scale it was 5.6 for Placebo and 5.9 for the supplement. That is, from "slightly better" to "better" on both measures, and not much difference with the supplement. (Side note: The study does show some statistically significant improvements on other measures, but it's not clear if the supplement only helps children who are "fussy eaters" - as always, caution is warranted given that vitamins are drugs).



I've come up with the following possible explanations for these results:

A) A regular placebo effect is at play, i.e. children realize they are undergoing treatment and improve as a result.

B) There's a placebo effect on the parents, i.e. they become optimistic and this positively reflects on the outcome of their children.

C) Parents and researchers are biased in their final evaluation, as they expect a positive outcome following treatment.

D) Autistic children, like any other children, are constantly developing and changing.

I think we can all agree that explanation A is impossible and may be discarded. Explanation B seems a bit far-fetched, but if true, it would bode well for the notion that optimism and enthusiasm are beneficial to children (something doctors and researchers are not very helpful with). Explanation C is quite plausible. Nevertheless, note that the Sandler (1999) study used a less subjective evaluation method carried out by researchers, not parents. And consider that researchers are notoriously pessimistic about autism and its outcome. Furthermore, in the Adams study, parents rate certain physiological outcomes (e.g. intestinal problems) as "no change" on Placebo. This is not surprising, but shows that parents might not be too biased on their expectations. This leaves explanation D as the most likely one: Autistic children do develop on their own, except parents usually only notice when they expect it.