Archive | Autism RSS feed for this section

UK Charitable Giving and Spending

29 Sep

Research Autism – a UK website that takes an evidence based view of autism research – discusses a report recently released by New Philanthropy Capital. The report, entitled A Life Less Ordinary, is one of the most thorough and thoughtful pieces of Philanthropy I have read on the subject of autism.

The take home statistic is shocking. People think autism is in vogue at the moment but the money tells the truth: £3.70 per head is spent annually on autism research compared to £1,000 per head for cancer. To me, that says it all.

Please pass on a copy of this report to all your friends, families, employers – anyone you know who makes charitable contributions needs to read this report.

More Evidence for the Safety of Vaccines

29 Sep

This article was originally published at the NeuroLogica Blog and is re-published here with permission.

By Steven Novella, MD
NeuroLogica Blog

A new study just published in the New England Journal of Medicine, Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years, does not support a correlation between mercury in vaccines and neurological damage. It adds to the growing evidence that vaccines are safe and they do not cause neurological disorders. This study did not look at autism (a study that will be published next year looks, again, at vaccines and autism), but the mercury-causes-autism crowd are still unhappy with the results.

I have been following this issue closely for several years. Although my awareness of the issue goes back much farther, I started to seriously research the claim that the MMR vaccine, or that thimerosal in other vaccines, causes autism while researching an article on the topic for the New Haven Advocate. As a physician (a neurologist) and a skeptical activist I knew I had to get this issue right. I certainly did not want to falsely stoke the flames of public fear, nor did I want to cast myself in the role of denier.

Early on in my research I really did not know which way I was going to go with the issue. Should my bottom line be that there is real reason for concern here, that there is nothing to the claims, or that we really don’t know and will have to just wait for further research? But after reading through all the claims on both sides, and all the research, it was an easy call – vaccines, and specifically the MMR vaccine and thimerosal, do not cause autism, and the alleged autism “epidemic” is likely just an artifact. Those claiming there is a connection were drowning in conspiracy thinking, logical fallacies, and blatant pseudoscience. Meanwhile every piece of reliable clinical data was pointing in the same direction – no connection.

But still, while I was confident in my final conclusion, a small connection between mercury and autism that eluded the existing data could not be ruled out. Or perhaps there was an angle to the whole story that we were missing but would later come to light. I have had enough experience with scientific medicine to be humble in the face of the complexity of medicine and biology. The only rational position is to remain open to new data and new ideas. On this issue there was sure to be more studies in the future – and the ultimate test of the thimerosal-autism connection, the removal of thimerosal from the vaccine schedule, was yet to be seen. So I confidently plunked my nickel down and waited for the future to unfold.

Everyone likes being right, and sometimes this desire clouds our judgment. I have learned, therefore, how to cheat, which is to say how to always be right. All you have to do is say that your position is based upon the existing data, but is contingent upon the results of future studies. In other words, the “right” position is to change your final answer to accommodate new evidence as it comes in. Therefore the only “wrong” answer is to stick to your original position despite new evidence that contradicts it.

OK – so this is just restating how science is supposed to work, but it is amazing how many people forget to cover their behinds with this simple rule. Usually this is because they are not doing science – they are taking an ideological position, and ideology is inflexible. This is a huge advantage for science over ideology, and why, when science and ideology clash, science is almost always right.

In the case of vaccines and autism, since writing my first major article on the topic, the data has come in all consistent with my original position (so I get to be doubly right). Removing thimerosal from vaccines did not decrease the incidence of autism (or decrease the rate of increase in new diagnoses). And several new major studies came out all showing no association – not counting the utter crap being produced by the Geiers.

Enough had happened to warrant an update, so I jumped at the chance when Ken Frazier of the Skeptical Inquirer asked me to write an article on the topic. My article will be out in the next issue, along with a couple of smaller ones on the same topic, so take a look.

Alas, as is often the way in the world of science, my paper is outdated before it even goes to print. This new study, of course, will not be covered in the article. But that’s what blogs are for – instantaneous news and analysis.

Actually, several of my fellow science bloggers have already beat me to the punch. They cover the article, and the response to the article by the mercury crowd, in great detail, so I will not duplicate it here.

Orac at Respectful Insolence goes over the press release of A-CHAMP (one of the mercury militia) that attempts to dismiss the study. He shows that, while the study (like all studies) has its weaknesses, it does add significantly to the body of evidence showing that vaccines are safe. The complaints of A-CHAMP are either wrong, overblown, or inconsistent with their prior positions and shows that they are just trying to tear down the study at all costs.

For the record, I agree with Orac that the study is good enough that it’s conclusions add to the cumulative data on this topic, and that the weakest element of the study was the 30% compliance rate. In other words, only 30% of the subjects that they looked at for the study made it into the final analysis. This opens up the door for selection bias. Orac is probably correct that this bias would likely overestimate a correlation, not underestimate it, but you can never be sure with such things.

I will add that the 30% figure is not as bad as it first seems. The study reports:

Of 3648 children selected for recruitment, 1107 (30.3%) were tested. Among children who were not tested, 512 did not meet one or more of the eligibility criteria, 1026 could not be located, and 44 had scheduling difficulties; in addition, the mothers of 959 children declined to participate. Most of the mothers (68%) who declined to participate in the study and provided reasons for nonparticipation cited a lack of time; 13% reported distrust of or ambivalence toward research. Of the 1107 children who were tested, 60 were excluded from the final analysis for the following reasons: missing vaccination records, 1 child; missing prenatal records, 5; missing data regarding weight, 7; and discovery of an exclusionary medical condition during record abstraction, 47. Thus, 1047 children were included in the final analyses. The exposure distribution of the final sample was similar to the exposure distribution of the initial 3648 children selected for recruitment in the study.

So about 40% of those that did not make it into the final analysis simply could not be located – this is unlikely to represent a bias. But this is a small point.

Isles from Left Brain/Right Brain points out that Sallie Bernard (a believer in the mercury hypothesis) was consulted on the study design and execution and did not criticize its methods until after the results came back negative. That kind of behavior instantly sacrifices all your credibility in the science club.

Kristina Chew at AutismVox reiterates what I did above – that the mercury-causes-autism ideologues are always asking for more studies, but refuse to change their position when the studies they ask for come out. They are waiting for studies that show what they want them to show – we call that “cherry picking.”

The other side is busy too. David Kirby (a bad journalist who desperately wants to be a bad scientist), who wrote the book Evidence of Harm, published an article online in that absolute rag, The Huffington Post (to be fair, they also published this piece by Arthur Allen defending the paper’s conclusions). Kirby repeats all the same points in the A-CHAMP press release, but he emphasizes the fact that the study found some neurological symptoms that were higher in the subjects who received more thimerosal. Kirby proceeds to completely misinterpret the significance of this.

The study looked at 42 different outcomes, and set the p-value for significance at 0.05. A vague concept of basic math should be sufficient to see that some outcomes will reach significance by chance alone. The researchers arguably should have adjusted their statistics to account for the fact that they were looking at 42 variables – but instead they just looked at all the outcomes that were significant to see if there were any patterns or trends. What they found was that there were a few scores that were worse among those exposed to more thimerosal, but there were also a few scores that were better. There was a random distribution of positive and negative effects that essentially average out to no net effect. It’s all just noise. (Is there a small signal hiding in the noise? There could be – scientists have to be honest about that. But that doesn’t mean there is.)

What Kirby does is not just really dumb, it’s despicable. He cherry picks all the negative (meaning bad) neurological outcomes and pretends that the study shows a correlation (it doesn’t, when you look at ALL the data). He then tries to dismiss the positive (good) outcomes as absurd. He mockingly writes:

If they (the CDC) really mean that thimerosal increases IQ levels in males, then sign me up for a double-dose flu shot this year.

No, David, they don’t mean that. Not by any stretch of the imagination. It takes incompetent statistical analysis or the blindness of ideology to write something so ridiculous. What the CDC means is that the study does NOT show that thimerosal increases IQ, nor that it causes motor tics, or improve motor skills, or decrease language skills, or anything else. The study showed no correlations because it all averaged out as noise.

This is, by the way, the same mistake that astrologers make (remember that crusty pseudoscience?). They look at many variables then cherry pick the outliers. At best what this study might show is a possible correlation, but any such possible correlation would have to be corroborated by a later study (with fresh data) that looked specifically at that one variable.

So the pattern that I found when I first started looking at this issue – that all the reliable data was on the side of no correlation between vaccines or mercury and autism or neurological disorders – continues to hold up to new data. The other pattern I noticed – that those promoting a correlation were relying on bad science, logical fallacies, and ad hoc conspiracy claims – also continues to hold.

In the last few years every new study showed no correlation, and the mercury militia responded with abject nonsense and dismissal. This cycle seems to be repeating itself over and over, and this latest study is no exception.

History teaches: Quackery – hard to kill. People – not so much.

29 Sep

New Scientist had an article recently describing the history of the use of X-rays as a beauty treatment. Who knew that radiation’s ability to make a person’s hair fall out was once exploited as a hair remover?
Histories: The perils of X-ray hair removal

FOLLOWING Wilhelm Roentgen’s discovery of X-rays in 1895, doctors around the world turned their primitive X-ray machines on everything from their own hands to patients with cancer and tuberculosis. To Albert Geyser, a brash German immigrant who graduated from a New York medical school in that heady year of discovery, X-rays were clearly the future of medicine.

Researchers quickly noticed that exposure to X-rays had a remarkable side effect: it made hair fall out. In Austria, physician Leopold Freund recommended it as a treatment for excess body hair, or hypertrichosis. “Hair begins to fall out in thick tufts when lightly grasped, or it is seen on the towel after the patient’s toilet,” he observed in 1899. … Tests followed across Europe and North America with apparent success, … There were already hints that all was not well, however. In France, some doctors reported that their patients had fallen ill. Loath to admit that X-rays were responsible, Freund blamed “the hysterical character” of French patients.

Now working at Cornell Medical College in New York, Geyser embraced X-rays with enthusiasm. Like many others, he paid a high price for his zeal: radiologists were belatedly realising that frequent exposure to X-rays could be dangerous, and Geyser suffered burns that claimed the fingers of his left hand. Undeterred, he invented the Cornell tube – an X-ray vacuum tube of leaded glass with a small aperture of common glass, meant to direct lower-energy, or “ultrasoft”, X-rays directly onto a small area of skin. With the Cornell tube, “the X-ray is robbed of its terrors”, declared The New York Times. By 1908 Geyser had administered about 5000 X-ray exposures with his tube, for a variety of skin ailments. Others remained suspicious of X-rays, and the County Medical Society’s lawyer warned Geyser that “the time is coming soon when if a man is burned, the doctor will be held liable… Don’t use the X-ray unless you know what you are doing with it.”

The article goes on to explain how the use of the Cornell tube’s “ultrasoft” hair-removing rays became known as the “Roentgen therapy for hypertrichosis,.” In 1915, Geyser published an article in, The Journal for Cutaneous Diseases, he assured his readers that “no protection of any kind, either for patient or operator” was needed when using his Cornell tube. In 1924, Dr. Geyser and his son founded Tricho Sales Corporation. They advertised the glories of the Tricho System in hundreds of advertisements that went into newspapers throughout North America. Promises in these ads included: “no injury to skin will result.” Explanations of how it worked noted that it used a “hair starvation process” and that it worked by way of, “radio vibration.” Female relatives of physicians just swore by it, apparently.

Soon there were Tricho clinics in over 75 cities in the U.S.. The process was tidy and painless, the only thing that operators or clients might have noticed was a “faint hum and a whiff of ozone.” The women only need to be exposed to the X-rays for a few minutes, and voila, some time later their hair fell out.

You may be asking, “Approximately, how many women underwent this thoroughly modern beauty treatment?” The New Scientist article says the New York City clinic alone claimed 200,000 clients. These clients would have paid from a “few hundred to over a thousand dollars” for a course of treatments. That’s a huge chunk of change in 1920’s dollars.

OK… so are we all waiting for the other shoe to drop here?

Tricho’s triumph was short-lived.

In 1926, Ida Thomas of Brooklyn sued Frank Geyser (the son) for “a staggering $100,739 – the cost of her facial treatments plus $100,000 in damages.” Ms. Thomas sued because her skin had thickened and wrinkled following the treatments. Two years later Frank Geyser “was arrested following a similar complaint.” Then things got really ugly. Clients now were suffering from “wrinkling, mottling, lesions, ulcers and even skin cancer.” The Journal of the American Medical Association commented on this new health problem, “In their endeavor to remove a minor blemish, they have incurred a major injury.” In July 1929, the AMA condemned the treatment as dangerous.

What was Tricho’s tactical response to all these people–like the AMA–bunch of killjoys–trying to bum them out, bring them down? What action could rescue the Tricho Sales Corporation from losing revenue by the handful, not unlike a radiation poisoning victim losing hair?

Well, if you’ve been following the saga of Defeat Autism Now! and similar groups, and their history of promoting questionable and even plainly dangerous quack therapies, you may have at some point thought to yourself:

“What could rescue autism quackery and it’s adherents from the doldrums induced in part by the death of Abubakar, but also by the criminal charges being brought against the DAN! doctor who killed him, the lack of a promised drop in the numbers of children being diagnosed with autism following the reduction of the use of thimerosal in childhood vaccines, the ridiculous show put on by so-called “expert witnesses” chosen by the Petitioners Steering Committee in the Cedillo vaccine hearing, accumulating evidence tending to exonorate vaccines as not being a cause of autism, and even the exposing of Andrew Wakefield’s seeming ethical problems in his General Medical Counsel hearing in London?”

Or, “What does autism wingnuttery need, right now, to give it life again, you know, fluffliness and bounce and shine, like a good salon-quality shampoo can do for listless hair?” Maybe autism quackery could borrow a page from the Tricho corporation playbook…what DAN! and company needs NOW is and what Tricho Sales Corporation got in their hour of need …

A celebrity endorsement!

Ann Pennington

Ann Pennington, was played as Tricho’s “trump card,” according to the NS article. She was the star of 1929’s hit film, Gold Diggers of Broadway.” The article continues:

And if clients had any lingering doubts, the elder Geyser’s impeccable medical credentials probably reassured them. Yet closer inspection of Geyser’s record would have shown that although he carried out research at a prestigious medical college, some of his work was decidedly dubious: he had used electric shocks to treat all sorts of conditions, from gonorrhoea to asthma, and had made unsubstantiated claims to have found cures for tuberculosis and anaemia.

Inevitably, more Tricho victims appeared in JAMA, including a patient in Washington DC “so depressed as a result of the disfigurement of the X-ray burn that she attempted suicide”. Geyser, it seemed, had either been too greedy to heed any warnings, or had convinced himself that his Cornell tubes really were safe. Whatever his motivation, he had installed poorly regulated X-ray machines across the country, and tens of thousands of women – perhaps even more – were exposed to massive doses of radiation on their faces and arms. They had also received wildly varying doses: some women had as few as four treatments, others as many as 50. And because X-ray exposure rises as an inverse square of distance, even a slight shift in sitting position could double or treble a client’s dose.

With the prospect of being sued for millions of dollars, the Tricho Sales Corporation collapsed in 1930. …

If we all feel a sort of vicarious relief at this point, turns out, it’s premature. Other companies noticing the financial success of the Tricho clinics developed their own “copycat operations.” If the training was miniscule for the Tricho clinicians, it seems that it was even less among these newcomers to the game. Medical and business groups responded by trying to close down these outfits, too. But they just went underground. The article says that in 1940, San Francisco detectives were on the trail of what they thought was an illegal abortion clinic. To their surprise, no doubt, the place in question was instead one of these hair-removal-by-radiation shops. And such shops were still taking in customers “at least” into the 1950’s.

Since all radiation-poisoning “fallout” isn’t noticeable immediately, you can imagine how the story of the customers of the Tricho clinics kept coming up again and again in doctors offices into the 1960’s and 70’s.

One 80-year-old woman arrived with a grapefruit-sized tumour in her head; another refused treatment until she had “a huge and deep crater occupying practically the whole lower half of the breast and the chest wall immediately below it”. By 1970, US researchers were attributing over one-third of radiation-induced cancers in women to X-ray hair removal.

Given cancer’s long latency and the many years that Tricho parlours and their ilk persisted, the procedure may not yet have claimed its final victim. Tricho’s most famous customer, though, had reason long ago to regret her endorsement. After spending her final years as a recluse in a small hotel room off Broadway, Ann Pennington died in 1971. Her cause of death, it was reported, was a brain tumour.

Now, no one is wishing a grapefruit sized tumor on to Jenny McCarthy or anything. For one thing, in the updated case of quack driven nonsense, the gullible celebrity endorser is not the one who is being subjected to questionable therapies. It’s her son. And no one wishes any harm to come to Jenny’s son in the least. He looks like an adorable boy. It’s a shame his mother has been fooled into believing the whole “most of these kids are practically saturated with candida yeast, it’s the reason they go all stimmy … it makes them act crazy…put them on a prescription antifungal and a restrictive diet and you’ll get your kid back,” thing (not to mention the whole anti-vax and autism epidemic thing). If his mom and doc sent a blood sample off to Immunosciences lab before it was closed (this past July) then she likely got a bogus positive result. Then the fool doctor could write a prescription for a toxic antifungal (all drugs are toxic, don’t you know, depends on the dose) that the kid likely didn’t need–just to make mommy feel like she’s doing all she can to “pull her son through a rapidly closing window” and give her something to write about besides.

One really scary lesson from the Tricho debacle is that this deadly quackery hung around for so long. In this case, bad news, the news that these radiation machines could easily cause a client’s slow death, besides creating some really ugly skin, didn’t seem to travel quickly enough. Tricho shut down in 1930, but the technique and hype they developed was still be employed forty years later on new suckers, the ones born every minute. The Candida yeast (as cause of dozens of chronic disorders) business was a stupid health fad in the 1980’s. The fad died for the most part, but apparently Jenny didn’t know about it, or didn’t take a clue from it, and here she is in 2007 promoting it as the thing that stood between her autistic son and being a typical kid.

It was interesting that the Tricho company was founded by an apparently unethical doctor, Albert Geyser, who had a pretty respectible looking CV, and who claimed to have great insights into and treatments for many different diseases. Albert went into business with his son. Hmmm. Who does that remind one of? Someone else with a German name that sounds a bit like Geyser. There’s also a creepy and creepier brother duo in autism quackery with a similarly questionable looking, but less impressive-looking background.

When one compares the seeming safety profile of Mr. and Dr. Yasko’s (and Garry Gordon’s) ridiculous RNA yeast soup, or the homeopathic water drops said to be favored by Katie Wright, with something like Lupron and IV chelation, one can almost be grateful for such benign, if expensive and reprehensibly misrepresented, “cures.” But there are major question-marks hanging over the safety of things like long-term, high-dose methyl B12 injections given to kids who are not deficient in B12. There are questions about high doses of any vitamins for anyone. Some mineral supplements are contaminated with heavy metals, so are some chelators, apparently. Lots of biomedded kids take vitamin and mineral supplements. There are questions about the dangers of hyperbaric oxygen therapy, like what if the kid is susceptible to seizures and you put him in the HBOT tank and the extra oxygen kindles these seizures?

As for the recent Jenny McCarthy road show and it’s effect on the DAN! dox customer base, it’s hard to say who needed whom more–DAN! suffering from a series of bad PR breaks, or Jenny suffering from a sagging career and a failed attempt at making a go with the Indigomom Crystalkid schtick. It’s hard enough for a talented actress to keep getting work at age 35, they say, imagine what it’s like for short-on-talent Jenny with her now famed post-pregnancy stretch-marks “that glow in the dark … for some reason!”.

DAN! and Jenny McCarthy deserve each other. Let’s hope they both quickly skulk out of the limelight and into obscurity and may they take their quack therapies, benign or not, with them.

Paul Collins is the writer of the above mentioned New Scientist article. The writing style would seem to indicate that it’s the same Paul Collins who is the author of the fantastic book, “Not Even Wrong.” If so, this Mr. Collins is the father of a beloved autistic boy.

CDC Cleared

29 Sep

Close on the heels of the New England Journal of Medicine’s publication of a new CDC study finding no connection between thimerosal and neurodevelopmental deficits, Sen. Mike Enzi released a report detailing the findings of a lengthy investigation by his committee staff.

One’s first reaction to the prospect of Congress taking on a scientific issue is to brace oneself, but look! On the first page in bold type, the report reads,

“Congress is not in a position to substitute its judgment for that of scientists. Therefore, this report does not render an opinion on the safety of thimerosal in vaccines. Rather, the investigation assessed allegations of misconduct by government officials and private entities in connection with the thimerosal controversy.”

How refreshing! A legislator who does not believe himself to possess greater powers of discernment than experts in a technical field!

It gets better.

“Allegation #1a: The Centers for Disease Control (CDC) interfered with the 2001 and 2004 Institute of Medicine (IoM) studies on vaccine safety.”

“Finding: The allegation is not substantiated.”

—

“Allegation #1b: There were conflicts of interest among the members of the Immunization Safety Review Committee (ISR Committee) and the studies they relied upon.”

“Finding: The allegation is partially substantiated. While we identified shortcomings in IoM procedures for screening potential committee members for possible conflicts of interest, there is no evidence to support the allegation that the work of the IoM’s ISR Committee was compromised by conflicts of interest.”

—

“Allegation 1c: The five studies that the Immunization Safety Review Committee (ISR Committee) based its findings upon have conflicts of interest with Centers for Disease Control (CDC) and vaccine manufacturers.”

“The allegation is not substantiated.”

—

“Allegation #2: The Centers for Disease Control (CDC) convened the Simpsonwood Conference to cover up the finding that thimerosal causes autism.”

“Findings: The allegation is not substantiated.”

(Somebody tell the Methodist women.)

—

“Allegation #3: Dr. Thomas Verstraeten, MD, MSc, was pressured into changing his research position regarding a causal link between thimerosal and autism.”

“Finding: The allegation is not substantiated.”

—

“Allegation #4: The Centers for Disease Control (CDC) effectively made the Vaccine Safety Datalink (VSD) non-public contrary to its statement that the link would be accessible to the public.”

“Finding: The allegation is not substantiated.”

—

“Allegation #5: International organizations were established to obscure knowledge about the safety of thimerosal in childhood vaccines.”

“Findings: The allegation is not substantiated.”

—

“Allegation #6: Thimerosal remains in childhood vaccines being supplied to third-world and developing countries.”

“Finding: The allegation is substantiated.”

Guilty! String up those pharma connivers for supplying poor children with lifesaving vaccines in formulations that make it possible for many doses to be administered without the truck space and refrigeration required for thousands of single-dose vials.

—

“Allegation #7: FDA inappropriately utilized Environmental Protection Agency (EPA) guidelines regarding the dangers of mercury in vaccines containing thimerosal.”

“Findings: The allegation is substantiated. … The use of inappropriate guidelines from EPA was a source of confusion and contention in determining the appropriate response to concern regarding thimerosal in vaccines. … This error has caused countless individuals to conclude that ethyl mercury can be linked causally to autism.”

Reuters mischaracterized this a bit in their wire story, but the report elides some of the history, so that’s not surprising. What happened was that when FDA started looking at whether kids were exposed to too much mercury, there were three different guidelines by different federal agencies for how much methylmercury was too much. FDA tried to be conservative by assuming the most stringent – the EPA’s – was the appropriate one. But we now know that methylmercury just isn’t comparable to ethylmercury, and here FDA had set vaccines up to clear the highest bar in a competition in which it shouldn’t have been entered in the first place. *This* is what the report means by “inappropriate guidelines.” It does not mean that FDA should have been stricter about defining a safe level of mercury exposure.

You know, I’m not even finding a need for (further) snark here. It sounds so ridiculous laid out in print, I can’t believe Enzi’s staff had to spend what the report describes as “thousands of hours” putting this conspiracy bunkum to rest. But hats off to them! They did so decisively and with a degree of elegance.

Sick of the Dehumanising

28 Sep

I am utterly sick of Jenny McCarthy and the TACA urges to autism Yahoo groups members to bombard radio/TV stations where she is appearing with pictures of kids, telling them to tell the TV stations there kids are ‘recovered’ whether they are or not:

More help is needed to show the cynical world children with autism ARE getting better. They ARE recovering!. If you have a recovered
child or a child that is near recovered, has benefited HUGELY from biomedical intervention please read and consider the following.

WE NEED RECOVERED KIDS – families need to send in their stories and pictures of their recovered child or children. What is needed – Before and After pictures for kids who recovered from autism. (IT IS IMPORTANT TO SAY: I give permission for these photographs to be on air with Larry King 9/26/07 – include parents name & phone numbers with the childs first name only to appear.)

See? Doesn’t matter if your child actually _is_ recovered – or even recover _ing_ – just being a biomed user is enough to ‘prove’ recovery according to Julia Berle. The media spin is sickening. The attempt to utterly mislead people is sickening.

I am also utterly sick of hearing SafeMinds, the NAA, A-Champ and all those other soccer mom, white, upper-middle class me-me’s having the gall to say that a study that makes it clear in its abstract that it has nothing to do with autism is misleading the public about autism. This coming from groups who have incited violence against honest scientists and who have blatantly lied about these same scientists affiliations – with no apology or retraction – and who have paid journalists to write nonsensical, non-scientific propaganda on their behalf.

Further, I am sick of the Sally (I’m sorry, I can’t bring myself to carry on typing that ‘look at me’ version of her first name) Bernard’s of this world who – even when invited to help design a study and who are happy to do so, don’t possess the moral fibre to stick with the study they helped design because it didn’t produce the results they wanted. And not only that, have the temerity to complain about the design of the self same study – _which they helped design without a word of complaint until it produced results opposite to her beliefs_.

Lastly, I am utterly, totally sick of the casual dehumanising of my daughter and people like her – autistic people – who are now happily being described by Jenny McCarthy’s pet quack as soulless.

Well, screw this, I’ve utterly had it. What I want to do is give Kartzinel a big loud and clear blast. And I need your help to do it. I also need the help of your friends and your friends friends.

I want to produce a video to post to YouTube which will be an utter refutation of such unbelievable crassness. I want to collect a picture of every autistic child who’s parent rejects the description Kartzinel gave for autistic children. They do not need to be named if you don’t wish to do so. They will not be identified. They will just be present. Please send me your photos to kevleitch@gmail.com. Please pass this request on to your friends. Please make sure this arsehole understands that referring to our children in this way is not acceptable.

Jerry Kartzinel’s Attack on the Dignity of Autistic People and their Families

28 Sep

I have just learned from a blog named The Quirk Factor that some guy named Jerry Kartzinel, claiming to be a doctor, has stated the following in the introduction to Jenny McCarthy’s book.

 “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one. It relegates every other “normal” thing to utter insignificance.”

This is an irresponsible and reprehensible statement to make, obviously. It’s not hard to imagine how statements like this in a highly publicized book could lead to an autistic child being institutionalized or worse.

But it is even more reprehensible because it is a complete fabrication. Can Jerry Kartzinel demonstrate his claim is true? I highly doubt it. In fact, let me propose something. If Jerry Kartzinel can successfully demonstrate, by means of peer-reviewed evidence, that his statement is mostly true, autism-specific, and not dependent on parental beliefs, I will publicly apologize to him. If not, I would suggest that he needs to apologize to autistic people and their families.

While there is some evidence that families of autistic children, like families of children with other disabilities, tend to have higher than normal levels of stress, the preponderance of the evidence suggests that these families experience resilience and adaptation by developing positive views on disability.

For example, King et al. (2006) found the following.

“The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.”

Bayat (2007)  identified “specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength. “  It then concluded that “a considerable number of families of children with autism display factors of resilience–reporting having become stronger as a result of disability in the family.”

Twoy et al. (2007) revealed “the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD.”

Bristol (1987) had found that poor adaptation in families of autistic children “was predicted by other family stresses, unwarranted maternal self-blame for the handicap, and maternal definition of the handicap as a family catastrophe.”

It is clear from these studies that adaptation improves as parents change their views over time in the direction of a positive attitude toward disability. Self-blame for autism, and viewing autism as a horrible nightmare will tend to make adaptation difficult. From these findings, I would suggest that parents who believe in an “acceptance” or “neurodiversity” type of model are better able to adapt and cope. On the other hand, parents who accept the sort of claim Mr. Kartzinel promotes, ironically, could very well end up as he describes in his statement.

Crowds.

28 Sep
 

  I would like to make this plain, I don’t want to make it rude

 But when talking of the small talk, well, I’m just not in the mood

 I have absolutely nothing against your personality

But I wish that just for once you would not sit by me.

 I am trying very hard to stop the sense of panic

As the noise it gets much louder and the scene becomes quite manic

 And I think I’ve got it sorted as I focus on a thread

 Examining the strands as they dance inside my head

 But you sit yourself beside me and though it’s not appealing

 I do not wish to hurt, do not wish to harm your feelings

 So I dig my fingers tightly and hope you aren’t aware

 That I now feel rather trapped and your words become a lair

 The sights and sounds that I had tried to block out and ignore

Are now returning tenfold since you do not know the score

 I don’t think I’ll ever tell you, since I know you mean no harm

 It is not your fault I crave for a gentle sea of calm

 But if you ever read this, I hope you will take note

 If you see me staring at the floor, leave me drifting in my boat. 

In 1931…

27 Sep

In 1931 Eli Lilly invented autism.  Or so the story goes.  Again, as the story goes, all autism is mercury poisoning or, more specifically, Thimerosal poisoning.  Thus, Autism didn’t  (and couldn’t) exist before the invention of Thimerosal in 1931.

Dan Olmsted has made a number of bloggish press releases on the “original” autism cases. You know, those kids that Dr. Kanner first reported on. According to that story, somehow all of the first cases (since there weren’t any before then) somehow found their way into Dr. Kanner’s practice.

Wouldn’t it be strange if there were autistic individuals born before 1931? Wouldn’t you expect Mr. Kirby or Mr. Olmsted to let us know if there were evidence of autism that didn’t fit this little model?

In a recent blog post, David Kirby noted that:

“But it turns out that a private citizen has paid the state each quarter to analyze the autism numbers according to year of birth, and not just by age group. State law requires that such privately funded analyses be made available to anyone else who asks for it

So I asked for it. What I got was rather interesting.”

Well, someone else asked for these data sets. Now I have them too.  Joseph has them as well.   And they are rather interesting.

The spreadsheets list the number of clients getting CDDS services by year of birth.  Open the most recent one and there, at the very top, are three of clients born before 1931.  Top of the list, someone born in 1920.   If you look through the past years, you will find as many as five in a single year.  There is evidence for more as some people come and go.

I can already write one of the responses to this post. “Thank you for pointing out that the number is so much less than 1:150 for the older generations”.

While you hope that we all go running after that particular red herring, reread the statement above: “..as people come and go from the system”.  Consider our now 87 year old client mentioned above.  He/she entered the system as autistic in late 1999.

Yessir, at 79 years old this person was added to the CDDS autism roll.   There are a lot of possible reasons.  He/She could have moved into the state, his/her family could have found that they no longer could handle the job alone or, and this is the big question, he/she was already in the system but was only identified as autistic at this late age.

That’s not the only example.  In 1992, a 70 year old was added to the list under autistism.  In 1992 a 64 year old was added, followed by another in early 1993. 

There are more, but you get the point.  These people, people born before the invention of Thimerosal are autistic and are being added to the CDDS lists as autistic late in life.

I do wonder why Mr. Kirby didn’t mention this.  I do wonder why he didn’t shoot a quick email to Mr. Olmsted to point this out.  One has to think that Dan Olmsted would be interested in getting the stories of the pre-Thimerosal, pre-Kanner autistics.  Then again, one has to imagine that Dan Olmsted probably has seen these data for himself already.  Why neither of them has seen fit to mention this or dig deeper into this is an open question.

For once I agree with David Kirby, “What I got was rather interesting”.

Delay Not Halt

26 Sep

A new study from Washington University in St. Louis has confirmed what a lot of us suspected about the developmental nature of autism: that it gets ‘better’ with time. A quick quote:

Like most people, individuals with developmental disabilities such as autism continue to grow and change over time, Shattuck explains: “Their development is not frozen in time and forever the same. That’s just not the case.”

So, contrary to the oft-espoused crapola from the anti-vaccine/autism groups (TACA, Generation rescue, SafeMinds, NAA, Treating Autism) that our kids will be stuck in this non-developing situation forever, actual _science_ – when it looked at the question – found that the direct opposite was true; that autistic people develop as they get older.

You won’t be surprised to hear me say that, for me, this casts extreme and renewed doubt on the claim by the chelation/lupron/HBOT extremists and child-experimentalists that without the miracle cure du jour their poor, poor child would have just rotted away. In fact, next time someone claims to you that without treatment X their child would not have progressed, please point them to this study.

For all major symptoms, the percentage of people who improved was always greater than the percentage who worsened,” Shattuck says. “If there was significant symptom change over time, it was always in the direction of improvement, though there was always a group in the middle that showed no change. The mean never went down.

Lets be absolutely clear about this study though – it does not claim that (as you can see from the above quote) – that every autistic person changes. It would be strange if it did. In all walks of life there will be a group who do not. But it is clear from the presented results that improvement over time is a regular and common feature of autistic development.

What is in a number?

25 Sep

As just about any parent in the US (and probably a lot elsewhere), “what is the prevalence of autism and you will get a nearly instant response, “1 in 150”.  They may know that this is also 6.6 per 1,000.  They will probably know that it was reported as 1 in 166 before that, and so the numbers are climbing.

Ask the same parents, “Where is the prevalence highest?” and you will probably hear, “New Jersey”.  They will probably know that it is 10.6 per 1,000 there, or more that 1 in 100.

Ask the parents, “What group had the lowest prevalence?”  My guess is that few will answer.  Some might recall that Alabama reported 3.3 per 1,000. 

Even that is pretty staggering:  Alabama has less that 1/3 the prevalence of New Jersey? Why aren’t people from New Jersey flocking to Alabama to avoid autism? Why isn’t moving to Alabama high on the Generation Rescue protocol for avoiding autism? Why isn’t anyone asking Congress to study “Autism amongst the Alabamans”?

Take a closer look, though.  Include subgroups.  Include ethnicity.  Who then has the lowest reported prevalence?  Almost no one knows.  Take a look at page 18 of the MMWR report by the CDC on autism. Who has the lowest prevalence?  Hispanics in pretty much everywhere checked.  More to the point, Hispanics in Wisconsin have 0.3 per 1,000 as the reported prevalence.

No, that isn’t a typo.  0.3 per 1,000 lowest compared to 10.6 per 1,000 as the highest:  a factor of 35 different.  It’s a factor of 22 lower than the national average.

Drop the Amish!  (well, since no one has ever bothered to ask their permission, don’t start with the Amish!) Let’s do a study on the Hispanics of Wisconsin!  Demand that your congressman/woman support a bill to study Autism in the Wisconsin Hispanics!

Maybe we will find out they don’t vaccinate!  Maybe we can spend $200,000 on a phone survey!

Maybe the numbers aren’t accurate.

The thing is, it is so obvious that no one commented on this.  For those invested in the epidemic, the reasons are fairly likely the obvious.  You can’t claim an epidemic with innacurate numbers.  You really can’t if we are still in catch-up mode to identify subgroups.

If we do a better job identifying people with autism, the numbers go up. Simple.  It could be hiding an increase in real prevalence.  Heck, it could be hiding a drop, for all we know.  You don’t need enough scientific background to even understand an “r” value to get that.

This isn’t news to the real front line.  Take a look at page 19 of the 2003 report on Autism by the CDDS.  Between 1987 and 2002 the total number of people served under autism by the CDDS increased by 733%.  That supports the epidemic, right?  But, at the same time, the numbers of Hispanics went up by 1,743%! 

How could this happen?  Were Hispanics more susceptible to the vaccines in the 1990’s, causing their numbers to skyrocket?  If so, why is the fraction of Hispanics served in the Regional Centers lower than the White fraction?

You don’t have to speculate, the CDDS tells us:

Increased efforts on the part of regional centers over the past 15 year to reach specific ethnic groups may have contributed in part to the proportional increase in Asians and Hispanics with autism entering the system.

Increased efforts results in higher numbers identified.  Not a tough one to figure out.  Just like increased awareness results in higher numbers identified.

Sorry all you epidemic believers.  If you really believed your own story you would have made a big deal out of the low numbers amongst Hispanics in Wisconsin and called for a study to understand their “resistance” to autism.  But, then you would have to admit that part of the reason the numbers in California went up was better identification amongst minorities. 

The thing is, we need to make a big deal out of these numbers.  It is shameful that we are allowing a large amount of our people to go unidentified.

That’s one big problem with the epidemic party line.  It allows, heck it requires, that we neglect the fact that we are undercounting and underserving people.

That is just plain wrong.

← Older Entries
Newer Entries →