Archive | Orgs RSS feed for this section

JB Handley vs Bernard Rimland

17 Aug

Over on the Rescue Post (so named so people might think it has an air of authority similar to the Huffington Post – they call themselves ‘editors’ bless them), Brad Handley posts on spontaneous recovery:

Have you ever tried to talk to someone involved with autism from the “other” side about recovered children?

Typically, the conversation goes something like this:

Us: So you think autism is a genetic condition and biomedical intervention is quackery?

Them: Yes, exactly.

Us: But what about the children who are recovered, how do you explain them?

Them: Well, they may have been misdiagnosed…

Us: Well what about the kids who have multiple diagnoses saying they were autistic and have been re-screened and no longer have a diagnosis?

Them: Well…a certain percentage of autistic children do spontaneously recover, we know that’s true. They probably fall into this camp.

Us: They spontaneously recover? What does that mean?

Them: Well…they do normalize…we just don’t know why.

Us: But most of the parents of recovered kids can tell you exactly why they recovered – they have the tests, videotape, and first hand experience to walk you through it.

Them: Well, they may think they know why, but no one really does…

Us: Buttsmoochersezwhat?

Them: What?

Incredible. Over here in reality, the conversation goes something like this:

Them: So you think autism is a genetic condition and biomedical intervention is quackery?

Us: No, we think its largely genetic but with a probable environmental aspect. We also think some biomed intervention is quackery, especially that which maims, hospitalises, kills and claims to cure autistic kids.

Them: Oh….um…er….ah- but hang on – vaccines are environmental therefore we win! Ha!

Us: You do realise that the word ‘environmental’ and the word ‘vaccines’ are not interchangeable right?

Them: Huh? Yeah, but….OK, lets go back to recovered kids. But what about the children who are recovered, how do you explain them?

Us: Define ‘recovery’.

Them: Kids who have multiple diagnoses saying they were autistic and have been re-screened and no longer have a diagnosis.

Us: OK, well, how many of the ‘success stories’ on the Gen Rescue site (for example) claim that their kids no longer have a diagnosis of autism?

Them: Hmmm?

Us: You heard us.

Them: Er, well – 7%

Us: 7%!!!!

Them: Yeah.

Us: Isn’t also true that Kevin Leitch managed to get his ‘low functioning’ (to use your phrase) autistic daughter registered as a ‘success story’ on the Gen Rescue website by changing only her name?

Them: Yeah.

Us: Good grief.

Them: Well, they didn’t just spontaneously recover! that doesn’t happen! Spontaneous recovery? How dare they make light of hard work by parents and miracles by their kids.

Us: Really? Here’s DAN! Founder Bernard Rimland: “Mysterious spontaneous recovery. It hasn’t happened often, but it has happened often enough for the phenomenon to be worth noting: over the past 25 years I have received a handful of letters from parents which read something like this: “Please remove our address from your files. Our child has continued to improve so greatly—we don’t know why—that now he is no longer considered autistic”.

Them: Buttsmoochersezwhat?

Us: Grow up you silly sod.

The DAN! Treatment of Tariq Nadama

25 Jul

This post was sent to me, as is by someone who wanted to write about this. I was happy to ‘host’ it.

Does the DAN! ‘Protocol’ have more to do with an autistic child’s death than meets the eye? Why does the newly re-designed Autism Research Institue’s (ARI) website still contain a statement about the death of Tariq Nadama, by Bernard Rimland (1928-2006), that appears to be based on old information and doesn’t amount to much more than logical fallacy? Does it matter that two physicians who treated Tariq Nadama are ARI-listed as DAN! practitioners?

The ARI website appears to have recently undergone some serious change. While such change may certainly have some supporters (after all, even Michael Jackson has die-hard supporters), in my opinion, it seems to call attention to the possibility that there are more flaws visible now (links to Generation Rescue), than there were to begin with. Perhaps some of the “less than pretty” parts stand out just a little bit more than they used to. The apparent involvement of DAN! practitioners in the “treatment” of Tariq Nadama, and a mother convinced that her child was “autistic due to immunization shots” is a good example. I actually find it hard to believe that this statement is still up on the ARI website, given what is now known about the story:

A DAN! practitioner (and endorser of ARI’s “Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper”) apparently referred the Nadamas to Roy Kerry, it doesn’t appear to be the case that Tariq had “been mistakenly been given a ‘look-alike’ drug” since Roy Kerry’s apparently prescribed the use of IV disodium EDTA, ENDRATEand Roy Kerry apparently became a "DAN! " after the death of Tariq Nadama.

Source

August 29, 2005
(updated March, 2006)
The Safety and Efficacy of Chelation Therapy in Autism
Statement by Bernard Rimland, Ph.D., Director, Autism Research Institute regarding death on August 23, 2005 of 5 year-old Tariq Nadama Of Pittsburgh, who was given intravenous EDTA chelation I have received many media calls regarding the above, very unfortunate matter.Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.Here is some additional information about chelation:
1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.
2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.
3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.
4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.
5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!®) document available at our website http://www.autism.com.
6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:
7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.

See related article titled “Chelation: The story behind the headlines”

Okay, now that it’s refreshed in your memories, let’s take a much closer look at this statement.

Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.

What the ARI website doesn’t tell you, is that the Order To Show Cause by The Commonwealth of Pennsylvania Bureau of Professional and Occupational Affairs before the Pennsylvania State Board Of Medicine (the complaint against Dr. Roy Kerry, the Pennsylvania doctor who prescribed the chelation therapy drug that resulted in the death of Tariq Nadama), leaves very little question about what apparently really happened:

“69. Respondent spoke to Professional Conduct Investigator of the Bureau of Enforcement and Investigator concerning his treatment of Tariq.”
“70. Respondent admitted that EDTA is very rare to use on children.”
“71. Respondent admitted to using Disodium EDTA to chelate Tariq.”
“72. Respondent stated to Investigator Reiser that Disodium EDTA is the only formula of EDTA he stocks in his office.”
“73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.”

Mary Jean Brown’s statement to the press was apparently made in January of 2006. The Order To Show Cause was not made public until September of 2006, so it’s understandable that ARI’s statement from March of 2006 does not reflect this new information. Isn’t it time for ARI to update their statement?

Here is some additional information about chelation:

1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.

Okay, so this is probably a statement of belief on the part of Bernard Rimland. I am not aware of any science supports the notion that heavy metals are “a major cause of autism” let alone that autistic children in general are “overloaded” with such metals. Why not just leave the explanation at, “Chelation is sometimes used to treat heavy metal toxicity”, or re-phrase it as a clear statement of belief? It also seems clear from the Order To Show Cause that there doesn’t appear to be any evidence that Tariq was “overloaded” with heavy metals.

“44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.”
“45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.”
“46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.”
“47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.”
“48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non¬provoked conditions.””
“49. Tariq had a minimal elevation of his lead level.”

2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.

Apparently, death is not as uncommon as ARI’s website might have readers believe, but aside from that, an appeal to the number of people treated with chelation therapy says absolutely nothing about the appropriateness (or major lack thereof) of chelation therapy for autism. While Rimland’s statement is clear that chelation is used to treat heavy metal toxicity, it seems pretty obvious from the Order To Show Cause that this probably was not the case given the lab results discussed and apparent desire on the part of the mother for the procedure.

16. The current complaint notation reads “wants to have iv … edta injection … an iv push. mother states Tariq is autistic due to immunization shots he was a normal pregnancy .. 1st shots were given the day he was born … no sx noted until age 18 mo … has had 12 other inoculation by time he was 18 mo old/…”

3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.

Hmm. Apparently it was the third treatment that killed Tariq, so to say he showed remarkable improvement after the first “few” chelation treatments would seem rather difficult. I suppose it’s possible that she may have been referring to other previous chelation attempts which may fall under the:
“has not been responding 10 other types of therapies and therefore she is recommending EDTA” described in the Order To Show Cause, but that doesn’t make sense that she would view them as having been responsible for “remarkable improvement”. I guess we’ll just have to chalk this one up to “appeal to testimonial”.

4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.

Tu Quoque! Two “wrongs” do not make a “right”. Risperdal is irrelevant to the safety or efficacy of chelation.

5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!) document available at our website http://www.autism.com.

Ah the good old appeal to popularity. Are readers to assume that because most autistic children who are chelated are chelated orally or transdermally, that it acutally does anything for autism itself, or that chelation is safe? Are readers to assume that because this is what’s popular, that the (DAN!®) document available at their website http://www.autism.com will appropriately caution about IV EDTA chelation? The (DAN!®) document discusses three common chelators. It does mention IV adminstration of “many different agents”, but it doesn’t appear to mention, exclude, or warn about EDTA by name at all.

_”There are many different agents for detoxification of metals, and some agents can be administered in different ways (IV, oral, rectal suppository, transdermal). The three major ones we will discuss include DMSA, DMPS, and TTFD. “_

It should be tempting to think that a document devoted to chelation, and endorsed by thrity-three professionals, would exclude EDTA. After all, the name “EDTA” is not specific to either of the two types of EDTA (Endrate or Versenate), and it’s use is notably cautioned by its own package insert.

6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:

I don’t expect that this is any kind of data that would be peer-reviewed and published in mainstream scientific literature, but I suppose I could be wrong.

7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.
See related article titled “Chelation: The story behind the headlines”

Parent Ratings? Please read what Prometheus had to say about this. But what’s one to make of “88 Biomedical interventions (including 53 drugs)!? Fifty-three? Holy experimentation Batman!
Let’s recap.

1) According to documents from Roy Kerry’s office, Tariq’s mother apparently came to believe her autistic child is autistic “due to immunization shots”.
2) Somewhere along the way, the parents seek treatment from DAN! practitioner, and endorser of the DAN!® “Treatment Options for Mercury/Metal Toxicity” document, Anju Usman.
3) While under the care (or prior to being under the care) of DAN! practitioner Anju Usman, some 10 odd therapies apparently fail to produce desired results. (This may or may not have included oral and or transdermal chelation as well).
4) The DAN! document makes no warning about IV EDTA. In fact, DAN! practitioner Anju Usman apparently refers Nadama family to Dr. Roy Kerry for IV EDTA chelation (she may have actually been the physician who recommended CaNa2EDTA – line 43 of the Order To Show Cause).
5) Roy Kerry (not a DAN! practitioner at the time according to Bernard Rimland), is the physician who prescribed Endrate.
6) Tariq Nadama is dead.
7) Roy Kerry is now listed as a DAN! practitioner.

National Autism Association – More Lies

16 Jul

I am beginning to wonder if National Autism Association are actually capable of discussing autism without lying any more. Its becoming more and more blatant. Today, they have released a press release of support for Andrew Wakefield which is simply bizarre:

Parents and advocacy groups around the globe are asking England’s General Medical Council (GMC) to cancel the “fitness to practice” inquiry that begins today against Dr. Andy Wakefield, and Professors Walker-Smith and Murch. Advocates say the GMC should instead be asking why so many kids are sick, especially in light of an apparently suppressed analysis showing that autism rates in England are as high as 1 in 58. The medical establishment is being criticized for doing little to find the cause, treat the kids, or prevent new cases.

Uh, no, no they’re not. Parents around the world (of whom I am one) are _not_ asking the GMC to cancel the hearings against Andrew Wakefield. I have read numerous letters, comments in blogs and on forums from parents who are quite happy to see the GMC conduct an inquiry into Wakefield’s behaviour.

An what the hell is this ‘suppressed analysis’ rubbish? Its not suppressed at all. The leaked study was not published and according to the lead author:

So, what are the facts on autism? Does the one-in-58 figure hold up? Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”.

The NAA – and anyone who really seriously believes this twaddle – really need to take a long hard look at their motives. Why are they doing this? They _know_ the claim that the data from Baron-Cohen’s study is suppressed is rubbish. What this press release is is simply propaganda. Why are the NAA purposefully lying?

And they continue:

In the first of 5000 cases to be heard in a special vaccine court in the US last month, evidence presented demonstrated that 12-year old Michelle Cedillo began regressing into autism just a week after her MMR vaccination at 15 months. The plausible cause was a persistent measles infection which took hold through an immune system weakened by mercury in vaccines administered prior to the MMR.

Well, the NAA must’ve been reading a different set of transcripts to me. The evidence presented, utilising the video evidence, and interpreted by one of the worlds leading diagnostic authorities on autism clearly showed Michelle Cedillo was autistic way before she had her MMR jabs. It was also clearly demonstrated that the evidence presented to support the assertion that MMR was a ‘plausible cause’ of autism was a joke. The MMR/autism theory revolves around the idea of measles from the MMR travelling to the gut then the brain and causing damage that results in autism. Without measles being present, there is no MMR/autism hypothesis.

Here’s the sworn testimony of Stephen Bustin, _the_ world expert in the technique Wakefield’s lab of choice screwed up:

What I immediately observed was that they had forgotten to do the RT step…….If you detect a target that is apparently measles virus in the absence of an RT step by definition it can’t be measles virus because it has to be DNA. It’s a very simple concept. At least it is to me. It’s not to everyone else……[b]ecause measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus….

We need to be absolutely clear about this. This isn’t an _opinion_ Bustin was expressing. These were findings. He was in the O’Leary lab for (if I recall correctly) about 1,000 hours.

Wakefield _never found measles virus_ .

Then it gets really surreal:

The charges originated from internet blogger Brian Deer, who many parents have suggested may be linked to the pharmaceutical industry. “This is nothing more than a witch hunt brought against scientists willing to undertake ground-breaking research challenging the assumption that autism is an inherited untreatable psychiatric disorder that cannot be prevented. Implicating the safety of vaccines such as MMR isn’t acceptable to drug companies or government officials who want to protect the vaccine program itself at the cost of the health of children,” said Mr. Bono.

Brian’s an internet blogger? Weird. last I hears he was a freelance journalist. Certainly the readers of his Times pieces and Channel 4 television reports would think so.

Mr. Bono also needs to internalise a few basic facts.

1) The MMR hypothesis has been on the table since ’97. So far there has been absolutely no valid research supporting the idea that MMR causes autism or contributes to the development of autism in any way. If there was, why was it not presented at the recent Cedillo hearing?

2) Since ’97 the MMR uptake fell to nearly 80% at one point. If, as the NAA suggest, autism has skyrocketed to 1 in 58 then how is it that MMR uptake has plummeted whilst autism rates have skyrocketed.

3) I would ask these many parents that the NAA know to back up their allegation that Brian Deer is linked to the pharmaceutical industry. I’m a parent. I don’t think Brian is a big pharma shill. I also think its a particularly pathetic whiny little stab.

4) This is not a witch hunt. This is a look at a man who _has_ put the health of children at risk. Measles and Mumps have increased four fold since ’97. One English child and several Irish kids died from Measles. Approx 12% of measles sufferers required hospitalisation.

Andrew Wakefield hid the results that he didn’t like. Here is Nick Chadwick on the original Lancet paper:

Q So you personally tested while you were in Dr. Wakefield’s lab gut biopsy material, CSF and PBMCs?
A Yes, that’s right.

Q And all the results were either negative, or if they were positive it always turned out that they were false positives?
A Yes, that’s correct.

Q Did you inform Dr. Wakefield of the negative results?
A Yes. Yes.

Andrew Wakefield conducted poor science. He hid the results that he knew would scupper his poor science. Children have died and have been hospitalised as a result of this appalling dereliction of medical duty.

CDDS and full syndrome arseholes

14 Jul

Every god-damn quarter, without fail. Every single one. The CDDS data gets released – Rick Rollens releases his usual ‘full syndrome’ crapola and tells us how autism is still skyrocketing and does his best Chicken Little impression and David Kirby chews at the edges of the data to try and find something that will support the idea that thiomersal plays any kind of role in autism.

Its getting really, really old.

Please let me say it to you one more time.

CDDS is not good source data for epidemiology. They say so themselves.

When CDDS refer to ‘full syndrome autism’ they are not, repeat, not referring to classical autism. See this form here? CDDS use it to record autism. It was designed in the 1970’s. The version in use today was last updated in 1986. Don’t believe me? Ask them.

Item 23 is where the term ‘full syndrome’ is used. This term is today utterly without meaning. It is the only place to record autism at all.

If we trun to this document and go to page 71 we can see the section dealing with autism. In terms of _having_ autism, a person either can, can’t or have autistic-like symptoms associated with mental retardation. Its not until page 77 that we get to any kind of recording of degree of severity. *Note that this has no bearing on whether a person _has_ autism* . That is already indicated.

Here is what CDDS passed on to me. I promised not to attribute this quote so I won’t but if anyone wants to double check then an email to CDDS would back me up:

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called “Autism.” But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

You might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers–for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth—are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

I really don’t know how much clearer this information can possibly be. And yet we still have full syndrome arseholes like Rick Rollens sending out emails that contain:

As stated many times before in these Reports, the numbers being reported by DDS only reflect those children that have received a professional diagnosis of full syndrome DSM IV autism, and do not include those with any other autism spectrum disorder such as PDD, NOS, Asperger’s, HFA, Retts, etc

So Rick:

a) Its impossible for a document/process written in 1978 and updated in 1986 to reflect the DSM IV.
b) The numbers quite clearly _do_ contain PDD-NOS, Aspergers Syndrome and Rett Syndrome.

And hey, if CDDS data is good then how would the following be explained?

It’s now 2005. Mercury started to be removed from vaccines roughly in 2001, we don’t know exactly when as the FDA won’t tell us, but kids entering the system now, four year olds for example in California entering the Dept of Developmental Services [CDDS] were born in 2001. So those kids theoretically get less mercury on average than kids born in 2000. So we should see fewer cases entering the system this year than we did last year.

– David Kirby

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis….total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

– David Kirby

Late 2006 should be the first time that rates go down,” said Handley. “If they don’t, our. hypothesis will need to be reexamined.

– JB Handley

DAN! Doctor Roy Kerry chelation charges

10 Jul

Thhe full set of charges against the people responsible for the death of Tariq Nadama have been posted online.

In particular, DAN! (defeat autism now) ‘doctor’ Roy Kerry has to face some very serious charges indeed.

At the time, various anti-vax apologists were saying it was a mix up of the chelating agent – that the wrong one was used. These charges kill that piece of silly rationalisation stone dead:

71. Respondent admitted to using Disodium EDTA to chelate Tariq.

72. Respondent stated to Investigator Reiser that Disodiun EDTA is the only formula of EDTA he stocks in his office.

Maybe someone could explain to me how it was a mix up when the guy only stocks one type of EDTA? Please, this I have to hear.

The list of charges against Kerry strike right at the heart of the whole quackery surrounding the use of chelation. Here’s a selection:

24. The aforesaid death of Tariq Nadama was caused by the negligence of Dr. Kerry in the following particulars:

a. In failing to make a diagnosis of the child which would justify the use of disodium EDTA;
b. In deciding to administer EDTA therapy to a child;
c. In deciding to administer disodium EDTA to “treat” autism when he knew, or should have known, that such therapy is not effective treatment for autism;
d. In administering disodium EDTA when he knew that such product was not approved by the Food and Drug Administration (FDA) for use in “treating” autism;
e. In administering the wrong type of EDTA, e.g. one that did not contain an appropriate calcium additive;
f. In ordering the administration of the EDTA in an excessive dosage and concentration;
g. In ordering the administration of the EDTA via IV push when he knew, or should have known, that said method of administration was too fast;
h. In failing to appropriately train, educate and instruct the employees of Advanced Integrative Medicine Center, Inc., who were involved in the administration of the EDTA;
i. In failing to advise the deceased’s mother, Marwa Nadama, of all of the risks of chelation therapy and all appropriate alternatives to such treatment;

This shows the autism/chelation cottage industry up for exactly what it is – dangerous psuedoscience with no regard for the children who are essentially experimented on by quacks with their parents approval.

I’m very seriously conflicted by the Nadama’s decision to sue these people. A large part of me is glad that Tariq will get justice and that RoY Kerry will join the ranks of his fellow DAN! Doctors who have injured people or who have court judgements against them. He deserves no less.

On the other hand, I think the Nadama’s bear some responsibility themselves – as do those who ‘advised’ her. The mother, Marwa, was a regular on various Yahoo/autism groups and had also posted to the (now defunct) guestbook of Autism Fair Media, Erik Nanstiel’s quack interview website. She was immersed in chelation quackery and yet her husband was a Doctor – a specialist registrar in respiratory medicine at an NHS hospital. It beggars belief that if they could find the quackery on this subject that they couldn’t find sites like mine which expose the quackery. A google.co.uk (the Nadama’s are British) for the phrase ‘autism chelation’ reveals Kathleen, Jim Laidler’s site, Stephen Barretts site and Diva’s site on page 1, this site on page 2. I simply cannot believe they did not know chelation for autism had a dubious reputation.

One thing that cannot be questioned is the dedication and skill of the investigators who have put long hours into putting this case together and (obviously) rescuing the Nadama’s from their beliefs in chelation/autism quackery. About the only positives to come out of this is the fact that the Nadama’s can now see autism/chelation for what it is. What a shame its two years and one life too late.

Nancy Snyderman and the NAA

7 Jul

Nancy Snyderman is a TV Doctor (for the Today Show apparently) who recently got the collective knickers of the mercury militia in a twist when she told her audience the truth about the vaccine/autism connection – that there isn’t one. What particularly galled them was being confronted with the truth of their own behaviour. When asked what she thought the motivating factor was for parents to be taking vaccine makers to court she replied with one word: ‘money’.

Several anti vaccine/autism groups published a group response, which you can find on the home page of our old friends and routine liars, the National Autism Association.

Let’s go through the main points of the letter.

Dr. Snyderman’s ties to Johnson & Johnson, defendants in vaccine injury litigation, are obviously dictating the agenda in her appearances on your network at the risk of the safety of our children.

Right. So is it OK to pay people or not? Or is it only OK if you’re the parent group of autistic kids? As I talked about recently, its clear that both the NAA and SafeMinds have financial interests of their own that need explaining. Either its bad for everyone to do it, or no one. Which is it?

NBC’s viewers were exposed to a blatant falsehood yesterday as Dr. Snyderman claimed that vaccines no longer contain mercury. This is not the case, and this misinformation has unfortunately given America’s parents a false sense of security that vaccines are now mercury-free. This false claim puts all of America’s children and the unborn at risk of great harm.

Before I start, I want to say I’m referencing the audio Bob Krakow of A-CHAMP helpfully provides.

In respect of the above quote, Snyderman says:

(thiomersal)…was taken out years ago and yet the rates of autism have increased….

So, NAA et al say this is a blatant falsehood and….

Mercury is still in most flu, tetanus, and diphtheria/tetanus vaccines–and an array of vaccines still contain “trace” amounts. (The term “trace” must be used loosely as this aspect of vaccine production is not being regulated and there is some variation on what constitutes a trace amount. As children often receive multiple “trace” amounts of mercury in one sitting, cumulative amounts and potential adverse effects are as yet unknown.)

This is a blatant falsehood. Thiomersal is _not_ in ‘most flu, tetanus and diptheria/tetanus vaccines’. It exists in one brand (out of three) of DTaP at a trace amount. The NAA and other alarmists may be interested in a blog post I made quite awhile ago about ‘trace’ amounts of ingredients. In it, I discuss how my bottled water has to list all ingredients including fat which exists at ‘trace’ levels.

In other words, the chances of you being overdosed on thiomersal from these vaccines are about the same as you getting fat from drinking spring water. Further, Snyderman is correct. There is no thiomersal _in_ these vaccines (which is what she was asked). These trace amounts occur from the use of thiomersal in the manufacturing process. Its extremely likely that there really is _no_ thiomersal in this one vaccine.

Now, Snyderman was asked about childhood vaccines in the context of the omnibus hearings. Here’s the anchor:

…as a result of getting vaccines when their children were babies….

So Snyderman’s answer of ‘none’ is absolutely correct. Flu vaccines, some of which still have thiomersal _in_ them are not specific to children and are not given to babies as part of the schedule.

As a physician representing NBC, Dr. Snyderman has failed to tell the truth about mercury-containing vaccines and the known dangers associated with them. There is simply no excuse for such careless and false reporting while this country is in the throes of a childhood epidemic of neurological disorders.

Woah…..neurological disorders again? Not autism? This is bullshit intended to allow one to say whatever they want. Hey – National *Autism* Association – how about sticking to autism. Is it because you are well aware that there is in fact no epidemic of autism? We all know what you think about that. You slandered the author of a study who performed science that disagreed with you and set your pack of parent harpies on him right? This was the result:

After Mr. Shattuck’s paper last year, he received “a half-dozen phone messages on my answering machine that were either vaguely or specifically physically threatening,” he said.

One person said, “Don’t be surprised if you get a knock on your door in the middle of the night and I’ll be there.” Another message said it was easy in the age of the Internet to find out where people live.

Anyway, back to the National Autism Association et al. the next part of their letter states:

During Monday’s NBC Nightly News Dr. Snyderman stated, “there really is no science” behind the autism/mercury link. Vaccines and the mercury-based preservative thimerosal have not been ruled out as a cause of autism. To the contrary, there are literally thousands of scientific, peer-reviewed studies supporting the extreme neurotoxicity of mercury and the relationship between mercury exposure and neurological injury

Hey look! There’s that ‘neurological injury’ thing again. What happened to _autism_ ? You are attacking Snyderman for answering a question that you don’t even tackle in your response. She was asked about _autism_ . Her answer was also totally correct. There _is_ no science behind the autism/vaccine belief system. Your response that there are thousands of peer reviewed articles about the toxicity of mercury and the link to neurological injury is utterly irrelevant and nothing more than a very transparent strawman.

In her most recent NBC appearance, Dr. Snyderman was asked why parents were filing claims on behalf of their vaccine-injured children, to which she answered matter-of-factly, “money.” This cavalier statement alone goes far beyond contempt and displays an appalling ignorance of the emotional and financial devastation faced by families of vaccine-injured children. This must be addressed by an immediate apology from NBC to all the parents of children suffering from vaccine-induced illnesses.

I urge Dr Snyderman _not_ to apologise or retract her statement as it 100% correct. It is the only possible outcome from these hearings. If they win, the petitioners get money. That’s why the court was set up. Its a ‘no fault’ system. Do you need it explaining again?

We urge you to speak with the growing number of scientists who have published research supporting a causal link between mercury in vaccines and neurodevelopmental disorders, and can provide you contact information for these researchers.

No one needs to do that. The science should speak for itself. If thiomersal causes autism, the peer reviewed literature will show that. Guess what? It doesn’t. Peer review does not include quack journals like Medical Veritas or JPANDS.

Reporting false information is a disservice to the American people.

I find it absolutely unbelievable that this statement is on the NAA website, the source for the false information about Paul Shattuck that led to his being hounded and threatened.

There is a choice selection of the more extreme antivax groups and individuals who are cosigners of this letter (although no SafeMinds I note – wonder why…).

These groups need to start looking at their behaviour. It is appalling. They have already led one researcher to being threatened over his phone because his _science_ didn’t agree with their _beliefs_ – what will happen to Nancy Snyderman? Maybe here is a telling sign. I got this from (you guessed it) the Evidence of Harm Yahoo group:

From: andrea52521991
Date: Apr 5, 2007 3:20 PM
Subject: [EOHarm] Re: Oprah, Autism Speaks, etc…
To: EOHarm@yahoogroups.com

……..

I’d like to meet Dr.Nancy Snyderman in a dark alley someday and shove a 100 HPV vaccines right up her smug ass!

………

The truth is that these groups have an ugly, ugly problem with violence and an unhealthy fixation on committing acts of violence towards people who don’t agree with them. They have recently introduced what seems to be a new policy of referring to ‘neurological disorders’ when responding to points about ‘autism’ and need to have a long, hard look at both the accuracy of their public statements and their methods of what seem to be little more than inciting violence towards people they don’t like.

Safe Minds and David Kirby

5 Jul

Suspicions have been circling for a long time that there was more than just coincidence to the timing of writing and publication of Kirby’s Evidence of Harm. Those suspicions were enhanced for me when it became clear that a lot of Kirby’s associations with certain autism/anti-vaccine groups such as the National Autism Association were on a financial footing.

The ‘official’ story regarding the writing of Evidence of Harm, as reported by Kirby himself, was that Kirby was casting about for something to write about of book length and had been approached by several autism parents who wanted to share their beliefs that vaccines had made their kids autistic. According to Kirby, he was skeptical and unsure about whether to proceed with it or not. What made up his mind apparently was seeing a news report that a politician had managed to attach a no fault rider to a bill passing through Congress, absolving vaccine makers of any legal responsibility.

However, I don’t believe him. Up until recently, that belief was simply a belief. Rumours circulated that Sallie Bernard of Safe Minds was listed as the domain controller (i.e. she’d bought and paid for) the domain evidenceofharm.com. I emailed her to ask her one way or the other. She refused to answer that question. Kathleen Seidel has asked David Kirby that question. He refused to answer.

Why does it matter? Because Kirby claims to be impartial in this debate. His reviewers claim he ‘walks the middle line’ in his book. that his account is ‘even handed’. I would like to know how someone who has an established financial relationship to one major autism/anti-vax group can possibly be impartial. Would the NAA continue to fund Kirby’s website if he said he didn’t think thiomersal caused autism? I doubt it.

Turning our attention to Safe Minds, we can look at their records – records they must supply be law as they’re a non-profit organisation – and see exactly what they have financed. You can access these records via the orgs IRS Form 990:

Form 990 is an annual reporting return that certain federally tax-exempt organizations must file with the IRS. It provides information on the filing organization’s mission, programs, and finances.

Attached is Safe Minds 990 for 2005. It has some interesting details in it.

If we look at line 43, it has a listing amount of $99,196 for ‘Professional Fees’ expenses placed under the ‘Program Services’ Category.

This means that they paid people they considered professionals almost $100k to provide services to their programs. On page 15 of this same document they go into detail about what these services are.

…..THE BOOK “EVIDENCE OF HARM, MERCURY IN VACCINES AND THE AUSTISM EPIDEMIC: A MEDICAL CONTROVERSY” WAS RELEASED IN 2004 AND SAFEMINDS PRESIDENT, LYN REDWOOD, WAS FEATURED ON THE MONTEL WILLIAMS SHOW ALONG WITH AUTHOR, DAVID KIRBY. THIS IMPORTANT BOOK EXAMINES BOTH THE PERSONAL STORIES OF FAMILIES AND THE UNFOLDING DRAMA IN THE COURTS AND HALLS OF CONGRESS.

This is listed as a ‘Program Service Accomplishment’.

So what can we conclude? To me, this is pretty damning evidence that David Kirby was paid by Safe Minds to write Evidence of Harm. It certainly ties in with Kirby’s other financial benefits from the NAA. So much for impartiality.

I have some questions for Safe Minds and David Kirby.

1) Did David Kirby receive any kind of financial incentive from Safe Minds or NAA or any of their boards prior to writing Evidence of Harm?
2) If so, how much?
3) If not, please explain the 990 form from 2005 above and tell us exactly what the information in it means.

Generation Rescue Survey Results

26 Jun

Brad Handley has commissioned a telephone polling company to perform a telephone poll:

Generation Rescue commissioned an independent opinion research firm, SurveyUSA of Verona NJ, to conduct a telephone survey in nine counties in California and Oregon. Counties were selected by Generation Rescue. Interviews were successfully completed in 11,817 households with one or more children age 4 to 17. From those 11,817 households, data on 17,674 children was gathered. Of the 17,674 children inventoried, 991 were described as being completely unvaccinated. For each unvaccinated child, a heath battery was administered.

Oooh – exciting!

The results are damning apparently….

We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys

Woah, what? _Like_ autism…? And what the hell has ADHD got to do with anything? Oh right, right – I remember, Generation Rescue redesigned their site when they couldn’t make their old message of:

Autism is treatable. It’s reversible. It’s nothing more than mercury poisoning,” said JB Handley, founder of Generation Rescue.

stick. Now its more than just mercury and its more than just autism. Hey – if you can’t make one idea work, expand it and pretend you’ve _always_ meant that. In this survey, applicants were asked about ADD, ADHD, Aspergers, PDD-NOS, Autism, Asthma and Juvenile Diabetes. Nothing like muddying the water to make things clearer.

On the Generation Rescue page I link to above, Generation Rescue have kindly provided their source data but in closed access PDF’s. How helpful. Never mind, I turned all the aggregate data into an Excel file and had a bit of a look myself. UPDATE: All Generation Rescue Survey data is now available in Excel.

Now, my issue with Generation Rescue is solely to do with autism and vaccines. I really don’t care about their newly found interest in asthma or juvenile diabetes. Lets see what they say about their autism results:

Vaccinated boys were 61% more likely to have autism

Well, thats one way to look at it. Another way is to look at it properly. In the spreadsheet I created using Generation Rescue raw data the following was found.

Number of boys with Aspergers
Unvaccinated: 2% of total
Partially vaccinated: 3% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated. If you are fully vaccinated your chance of being Aspergers is exactly the same as if you were unvaccinated.

Number of boys with PDD-NOS
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDD-NOS if you have been partially vaccinated. If you are fully vaccinated your chance of being PDD-NOS is exactly the same as if you were unvaccinated.

Number of boys with Autism
Unvaccinated: 2% of total
Partially vaccinated: 7% of total
Fully vaccinated: 3%
Fully and Partially combined: 4%

Conclusion: you are 5% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% greater than if you were unvaccinated.

Number of boys with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 8% of total
Fully vaccinated: 5%
Fully and Partially combined: 5%

Conclusion: you are 4% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of having an ASD is 1% greater than if you were unvaccinated.

These figures are laughable. 4% more likely? And that’s if your son has been partially vaccinated! If he’s been fully vaccinated the percentage increase drops to 1%. The figures for girls are even worse.

Number of girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 1% of total
Fully vaccinated: 0%
Fully and Partially combined: 0%

Conclusion: you are no more likely to have Aspergers if you have been partially vaccinated. If you are fully vaccinated your chance of being Aspergers is 1% less than if you were unvaccinated.

Number of girls with PDD-NOS
Unvaccinated: 2% of total
Partially vaccinated: 1% of total
Fully vaccinated: 0%
Fully and Partially combined: 0%

Conclusion: you are 1% more likely to have PDD-NOS if you are unvaccinated. If you are fully vaccinated your chance of being PDD-NOS is 2% less than if you were unvaccinated.

Number of girls with Autism
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of girls with all ASD’s
Unvaccinated: 3% of total
Partially vaccinated: 3% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are no more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of having an ASD is 2% less than if you were unvaccinated.

My goodness, this is _awful_ for Generation Rescue. Finally, we’ll look at girls and boys together:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDD-NOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDD-NOS if you are unvaccinated. If you are fully vaccinated your chance of being PDD-NOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion:you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

There’s no getting away from this. This is a disaster for Generation Rescue and the whole ‘vaccines cause autism’ debacle. Generation Rescue’s data indicates that you are ‘safer’ from autism if you fully vaccinate than partially vaccinate. It also indicates that across the spectrum of autism, you are only 1% more likely to be autistic if you have had any sort of vaccination as oppose to no vaccinations at all – and thats only if you are male. If you are a girl you chances of being on the spectrum are _less_ if you have been vaccinated! Across both boys and girls, your chances of being on the spectrum are _less_ if you have received all vaccinations.

Elsewhere

Orac
Prometheus

RFK Jr – Attack on sense

20 Jun

You can always tell when the mercury militia are hurting – they wheel out their biggest gun. The biggest gun they have in their armoury is RFK Jr, a man who seems to live on the reputation of his dead family members and not a lot else. Last time he dropped the biggest, steamingest, drippiest turd on the web in the fullsome (and entirely accurate) language of Orac.

Well, after reading RFK Jr’s latest verbal tantrum I think Orac might need to get out the Dynorod and try and flush this particular big shit in a small bowl away as quickly as possible.

RFK Jr claims firstly that:

The poisonous public attacks on Katie Wright this week–for revealing that her autistic son Christian (grandson of NBC Chair Bob Wright), has recovered significant function after chelation treatments to remove mercury — surprised many observers unfamiliar with the acrimonious debate over the mercury-based vaccine preservative Thimerosal.

Christian Wright has ‘recovered significant function’ has he? Any evidence for that? Any evidence even if he has that _chelation_ is responsible for this? No, didn’t think so. I’m going to go right ahead and assume that Christian Wright isn’t any more ‘significantly recovered’ than the other 90% + kids on the Generation Rescue page.

Kennedy may be unfamiliar with the sort of PR bullshit that Katie Wright’s self confessed mentor likes to spin so let me clue him in a little: The chelationistas love to claim ‘thousands of cured kids’ but when pressed, cults like Generation Rescue can only display 76 and when one examines those 76 carefully only 6 report their kids as recovered/cured/whatever. The situation with Katie Wright’s mentors is so ridiculous that I got my own daughters details published on their website as a ‘recovered’ kid.

So, Kennedy will have to forgive me if I’m less than impressed with the (unfounded) claim of ‘significant recovery’.

Kennedy then goes on to paint loving images of the mercury militia’s members:

Instead of a desperate mob of irrational hysterics, I’ve found the anti-Thimerosal activists for the most part to be calm, grounded and extraordinarily patient. As a group, they are highly educated. Many of them are doctors, nurses, schoolteachers, pharmacists, psychologists, Ph.D.s and other professionals.

I must admit I did start chuckling when I read this. I’m sure some of these people are clam and grounded but ‘for the most part’ they are comprised of racist, homophobic dullards such as John Best Jr – a man thrown out of 4 autism groups at the last count and who likes to fist fight his autistic son, or people Erik Nanstiel who holds down his autistic daughter to inject her with pointless, dangerous drugs. Or people like Christine Heeren who takes her son to a doctor who chelates him with IV’s of garlic and vinegar. Or people like Julia Berle who loves to crow about her ‘recovered’ son, neglecting to state that he was diagnosed, treated and ‘cured’ by Scientologists.

_These_ are your ‘calm, grounded’ people Mr Kennedy.

Kennedy goes on to describe the ‘overwhelming science’ behind the thiomersal hypothesis:

hundreds of research studies from dozens of countries showing the undeniable connection between mercury and Thimerosal and a wide range of neurological illnesses. In response to the overwhelming science, CDC and the pharmaceutical industry ginned up four European studies designed to disguise the link between autism and Thimerosal.

Wow. Kennedy must be privy to studies that the rest of the world isn’t. Where are these ‘hundreds of research studies…showing the undeniable connection’ between thiomersal and autism? Up your ass Mr Kennedy? How come they’ve not been used in the Vaccine court hearing of the last week? You’re a lawyer right? Get your legal backside down there and save the day with your ‘hundreds of research studies’.

The truth is Mr Kennedy, that the vast majority (key word: vast) of the ‘science’ done thus far by the militia is not of sufficient quality to be published in decent science publications. These ‘hundreds of research studies’ in habit the murky world of JAPANDS, Medical Hypothesis and Medical Veritas. These aren’t science journals Mr Kennedy, they’re agenda driven vanity publishers. Much like your good self.

Battling further through the stupid we come to this:

Ironically, it is the same voices that once blamed autism on “bad parenting,” and “uninvolved” moms that are now faulting these mothers for being too involved.

Er, what? Who has said that? When? Where? Cite your sources Mr Kennedy. You might also want to check, but I’m pretty sure that Bruno Bettleheim, the man who actually _did_ blame autism on bad parenting isn’t so vocal on the subject anymore. Possibly due to him being dead the last seventeen years.

You know absolutely nothing Mr Kennedy and yet you feel duty bound to poke your oar in anyway. Participate by all means, but do so from a position of knowledge, not ignorance.

Others fed up with RFK Jr

Steven Novella
Denialsim Blog
Orac

On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

← Older Entries
Newer Entries →