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The National Autism Association: You’re Not Helping

21 Jun

Its no secret that there are big questions over the legitimacy of the science behind the spurious claims that thiomersal causes autism. What’s not often discussed in the mainstream media is the extent to which blatant fallacy and misrepresenting occurs within so called advocacy groups.

The self-styled ‘autism community’ especially in the West are blatant hypocrites when it comes to promotong their own agenda. I aim to start highlighting some of the hypcricy and outright lies perpetuated by some.

The National Autism Association

The NAA first came to my attention when I discovered that Wendy Fournier, their President, was the web designer who designed (and I use that word in its loosest possible sense) David Kirby’s Evidence of Harm website. On this website there are claims from reviewers that Kirby:

explores both sides of this controversy

and that his book:

Walk[s] the middle line

It’s quite difficult how any book that has a supporting website designed by the President of an organisation that believes thiomersal cuases autism can be thought of as exploring both sides or walks the middle line. Its also difficult to see how the NAA gets so irate about what they percieve as non-impartiality.

On April 3rd of this year, Wendy Fournier and Rita Shreffler of the NAA put their names to an NAA press release regarding researcher Paul Shattuck’s study that said it was impossible to confirm or disprove the idea of an autism epidemic based on current knowledge. As this didn’t fit with the NAA’s agenda, they decided to play nasty:

In addition to the study’s weak methods and erroneous conclusions, questions have now arisen over possible failure to disclose conflicts of interest

So its interesting that the NAA are concerned about conflicts of interest only when they’re not their conflicts of interest.

So what about Shattuck’s conflict of interest? What was it exactly?

Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC).

Neither of things are true. As Orac commented at the time:

Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we’re talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities

and as regards the half a million plus dollars, Paul Shattuck himself had this to say:

As for the $540,000 from the CDC…it’s not entirely clear what they are talking about. I certainly don’t have a grant that big from anyone. They are probably talking about the autism surveillance grant that our center received from the CDC…a proposal which I helped prepare but am not listed as a co-investigator and am not funded from. Our University is one of several sites around the country funded to do prospective monitoring of the prevalence of autism and other disorders…am not sure why that is so horrible in the eyes of some advocates. I do have a small grant for about $12,000 from the CDC to investigate racial and socioeconomic disparities in the timing of autism diagnosis and service utilization. Prior research has indicated that the timing of identification and the level of service receipt can vary as a function of race and class. This is not a good thing in my opinion. So, I’m trying to find ways to do something constructive about it. I cannot imagine why some people would think that’s such an awful thing.

So, not only are the NAA hypocrites that only abhor conflicts of interests that don’t suit them, they’re also at best, wrong and at worst, knowingly lying.

Just as a follow up to this, I had a brief email exchange with Lenny Schafer where he said he was going to ask the NAA about this:

*Schafer to Leitch (Apr 27th 2006):*
I have forwarded Shattuck’s response to NAA and await their response. Thank you for making me aware of it.

*Leitch to Schafer (Apr 28th 2006)*
The NAA are already aware of these issues. I know of at least one person who has mailed them directly. They elected to ignore it and not to issue a correction or apology.

*Schafer to Leitch (Apr 28th 2006)*
I communicated today with the person who did the research for NAA. I am told a response is being prepared.

That was almost two months ago. The press release is still in place on the NAA website, along with the following quote from Claire Bothwell who it should be noted, given the NAA’s distate for conflicts of interest is either employed or at one time was employed by Waters and Krauss who are thiomersal litigant lawyers.:

Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation

I would suggest that given the obvious propensity of the NAA to be economical with the facts, their inability to research a subject properly and their failure to put the record straight is both irresponsible in its implications for autism research and its implications for people like Paul Shattuck who now finds himself grossly unfairly painted in a very negative light.

In a more recent Press Release, the NAA quote Wendy Fournier as saying:

In understanding that the court of public opinion sits in the driver’s seat, entities such as the General Medical Council discredit sound research in the name of a supposedly well-perceived vaccination program. Yet, this is a compromise. Compromise has no place in science, even science surrounding vaccinations.

Dr. Wakefield is one of the few that conducted research in truth, and yet the leaders in medical authority continue to compromise the health of subsets of the population that have negative reactions to shots like the MMR. Are we supposed to view these children as acceptable losses?” asks Fournier. “Dr. Wakefield’s willingness to find answers for these subsets is a testament to his scientific integrity.

Yet again, the NAA seems more than willing to bend the known truth and be incredibly hypocritical into the bargain. Certainly compromise has no place in science, which is why we should never compromise knowledge with bad science such as the original Lancet study or seek to bolster bad science with unpublished and unverifiable science such as that performed by Krigsman – a partner of Wakefields at Thoughtful House and thus someone who one would assume that the NAA, given their dislike of conflcits of interest, would be highlighting in as equally negative a light as they did Paul Shattuck. They also state unequivocally the Wakefield condicted research ‘in truth’ – which is an eyebrow raising statement given the fact that he gained his studies participants via vaccine litigants.

Good science does not require ‘assists’ such as skewing the population. And advocates like the NAA have no place in placing themselves at the center of a debate they obviously have little understanding of and which they are patently prepared to misrepresent.

This post has been sent as an email to Wendy Fournier, Claire Bothwell and Rita Shreffler. I’ll be asking them for a response either via email or via this blog.

Enough

10 Apr

_An open letter to Generation Rescue, NAA, SafeMinds, ASA, A-CHAMP, DAN et al._

I’ve had enough.

If I might be permitted to make a few assumptions I believe its accurate to say that _we’ve_ had enough. Who are we?

We’re parents like you. However, unlike you, the self-styled ‘autism community’, we are also autistic people. We are also scientists. We are also professionals working in the field of autism. We represent groups of people that you never can and never will. We are fundamentally different in attitude from you and _we have had enough._

Enough of the lies. Enough of the misrepresentation. Enough of this media circus you are turning autism into.

_You lie._ When the NAA published its scurrilous attack on Paul Shattuck it revealed the depth of its desperation. By wilfully and deliberately *lying* about the ‘Merck’ connection, you revealed yourselves as people willing to do anything and everything to blacken the name of those who simply disagree with you.

When you allege conflicts of interest that amount to absolutely nothing – _and when they know this to be the case_ – then you again reveal yourselves as tawdry and grubby dirt diggers, desperate to besmirch people. The irony of your president having an established and non impartial financial connection to David Kirby and your chairperson having been in the pay of lawyers litigating the thiomersal connection is immense. It boggles both the mind and any ordinary persons sense of common decency. At the absolute least you owe Paul Shattuck an apology.

_You mislead_ . When Generation Rescue _continue_ to state baldly that autism and mercury poisoning are interchangeable – that one is the other and that is all that autism is, it is obvious that that organisation is comprised of absolutist zealots who care nothing for reality, science or truth – all of which are concepts that stand in direct opposition to your beliefs. When you ignore the reality that there is likely to have been _no epidemic of autism_ and yet you continue to use falsely inflated statistics like a 6000% increase in autism _and when *you know* this increase is down to better diagnosis, widening criteria and the fact that its only in the last 15 years or so that autism has been counted separately to other developmental ‘disorders’_ then you move beyond the bounds of simply misleading, you move beyond the bounds of simple innocent ignorance and enter the area of wilful, deliberate manipulation.

When you resort to buying and placing adverts that _you know_ are misleading and with which _you know_ the people you cite do not agree, when you resort to employing the services of media manipulators like Fenton Communications to dress up your spin for you then you have left simple campaigning behind and entered the realm of deliberately misleading, exaggerating and falsifying.

When Generation Rescue employ the services of men like John Best Junior to enter the homes of families then you know something is badly awry with the morals and ethics behind this organisation. These are the words of a Generation Rescue Rescue Angel:

Some “brilliant” goofball coined the term “Homophobia” in a pathetic attempt to bring some small measure of respectability to a perversion. Fortunately for me, I grew up in an era when people were not subjected to public acceptance of sexual perversion. I never “stomped” a queer and I don’t approve of that behavior. I also don’t want to have to hear about this nonsense portrayed as anything near normalcy.

The scientists you quote range from respectable to quacks. You misrepresent the nature of the respectable science and hype the quacks as credible scientists. When your science is conducted by men censured by government and peers (the Geiers) or is conducted by men who behave very curiously such as pre-registering patents that back up future research, source subjects for studies that are undergoing litigation or allegedly financially benefit from these associations (Wakefield) or who refer to autistic children as ‘mad’ (Boyd Haley) or ‘train wrecks’ (Rick Rollens/MIND) or who attempt to make their science relevant _to autism_ where it is clearly not (Hornig, Burbacher, Deth, Bernard) then you have a serious credibility problem.

But none of this – none of it – would matter at all, except for one thing (or several things). You call yourselves the ‘autism community’. You present your manipulations as fact. You fail to understand the good science and twist the bad science to fit your agenda. You rely on people such as David Kirby – a man who is demonstrably dishonest and a man like RFK Jr who invents conspiracies where none exist. These are the people who shape your policy and guide your information – David Kirby, Dom Imus, RFK Jr, Dan Olmsted. Journalists, chat show hosts and a wannabe politico.

Enough is enough. I’ve had it. Up until now, we’ve contented ourselves with correcting your ignorance and dishonesty in blogs, forums and chat rooms. Now we will be finding ways to extend ourselves. Wherever you are quoted, we will follow up. We will make sure that people know the sort of spin you employ, the sort of manipulation you attempt and the sort of people who are aligned to your cause. Because of you, vaccine uptake is dropping. Because of this, epidemics are breaking and people are dying. Because of you the field of autism research is being turned, into the words of Lisa Randall, into a ‘a vipers nest’ where scientists are more and more loth to get involved. Who can blame them when the sort of shameful behaviour in evidence on the Evidence of Harm email list comes to the fore? Parents hassling and abusing people like Paul Shattuck, despite his clear request for them to cease and desist. Parents making alleged threats of property violence against Paul Offit.

Because of you, the field of autism research is in extreme danger of sinking into a dark age. The gains that autistic people themselves have fought for over the last few years are slipping away into a _real_ abyss of ignorance and stigma. This must be stopped. _You_ have to be stopped.

This is about dignity. Its about respect. You have none and you are in the process of taking ours away. We will fight for it. For ourselves, for our children, for our siblings, for the good of diversity and to attack stagnation we will fight.

Get ready.

Autism ‘Epidemic’ Groups Turn To Misrepresentation

5 Apr

Following publication of the Shattuck paper casting doubt on the evidence for an autism epidemic:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

Source.

The usual suspects have begun to trot out the usual ploys to try and misrepresent and obscure. The National Autism Association write:

A study published today in Pediatrics, “The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” suggests that autism diagnoses haven’t actually risen over the past two decades, despite *growing and credible scientific evidence to the contrary*. In addition to the study’s *weak methods and erroneous conclusions*, questions have now arisen over possible *failure to disclose conflicts of interest* and *recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated*.

So first lets tackle the ‘growing and credible scientific evidence to the contrary’. Where is it? Where does it exist? Note that NAA totally fail to name, or even _reference_ this ‘growing evidence’.

They also mention ‘weak methods and erroneous conclusions’ yet again failing to illustrate what these ‘weak methods’ are or why they are weak. As far as erroneous conclusions go, that seems to be NAA double-speak for ‘things we disagree with but can’t back up’.

But what about ‘failure to disclose conflicts of interest’? NAA say:

Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC)

Somebody remind me again – what year is this? 2003? 1999? Or is it 2006? two years after Dr Shattuck had *an alleged* financial relationship with Merck.

UPDATE: Orac Provides the following: _”Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we’re talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities.”_

By comparison, Wendy Fournier, president of the NAA has an ongoing, established financial relationship with David Kirby – author of Evidence of Harm – as does Safe Minds. Claire Bothwell, Chair of the NAA, works(worked?) for Waters and Kraus, lawyers who solicit thimerosal plaintiffs over the internet.

Lastly, what about ‘recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated’? Sounds damning, until you read on:

Although he was not personally implicated, Dr. Shattuck’s former research partner, a graduate student at the University of Wisconsin’s Waisman Center, was recently disciplined by the Health and Human Services Office of Research Integrity for scientific misconduct due to fabrication of data. Dr. Shattuck and others published several articles and delivered scientific presentations using data from the project in question

So someone that Shattuck once quoted got themselves in trouble. Thats hardly what I’d call

…with which current study author Paul Shattuck has been associated…

There’s also no indication that these studies Shattuck referenced, or the presentations he made which referenced them had _anything at all_ to do with autism.

The press release goes on to say:

Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation,” commented NAA board chair Claire Bothwell. “Clearly, the CDC has a vested interest in deflecting attention from the possibility that children injured by mercury-containing vaccines ended up with autism diagnoses which fueled autism rates off the charts

First of a message to the NAA, Safe Minds, Generation rescue etc – *you are not the autism community* . You represent a small subset of parents. Thats it. What you have is a good PR campaign and a few pet journalists.

Secondly, its clearly the case that several anti-vaccine groups such as NAA, SafeMinds etc are beginning to get very very jumpy and have a vested interest in deflecting attention away from the increasing evidence that there has been _no epidemic of autism_ and that autism is not caused by thiomersal in vaccines. Autism rates are not ‘off the charts’ – the charts were simply never big enough to start with.

These groups need to stop politicising the issues, need to stop painting themselves as ‘the autism community’ and need to stop this pointless and utterly transparent attack on any credible science that undermines their isolationist position.

Lupron: An Alternate View

17 Mar

I think it was Prometheus who first used the phrase:

You can’t reason someone out of a belief they haven’t reasoned themselves into.

By which he meant that proponents of the mercury/autism hypothesis were acting out of belief, innuendo and poor science rather than scientifically valid science and that subsequently trying to use reason to dissect their arguments was of limited use.

What I intend to do in the rest of this post is use the tactics, sources and methods commonly used by proponents of the autism/mercury connection to justify their belief systems. before I do I want to assure you that _nothing_ in this post is fabricated.

As we all know, Lupron has been big news recently. The Geiers love it, the mercury/autism crowd are clamouring to use it and the likes of Orac, Kathleen, Autism Diva, Prometheus and myself have all blogged comprehensively against its use.

However, we were using science and reason and as we know, there are people who are impervious to these things. However, when I received a fascinating email from a middle aged American woman who wanted to talk to me about Lupron I read her words with interest. As all proponents of the mercury/autism hypothesis know, anecdotes trump science. With that in mind I read her opening statement.

I am extremely concerned about the use of the drug Lupron being used on autistic children. As a former consumer of this drug, I can tell you firsthand how harmful it is. I understand the desperation people may experience trying to do all they can to heal their conditions, but we must not forget that Lupron is actually chemotherapy, and leaves the same conditions other forms of chemo do on patients. You wouldn’t give chemo to someone who didn’t have cancer, so how Lupron made the jump to all these other patient groups is purely manufactured by Abbott Labs, the parent of TAP who makes Lupron.

Lupron is chemotherapy. Lupron is manufactured by Big Pharma’s TAP – owned by Abbot Labs. A little digging on the Internet turns up lots of bad things about Abbot Labs:

ABBOTT LABS OBESITY DRUG KILLS 32 PEOPLE AND IS PULLED OFF THE MARKET IN ITALY

Source.

Abbott Laboratories, the world’s 12th largest drug company, has been suspended for a minimum of six months from membership in the Association of the British Pharmaceutical Industry (ABPI).

Source

If there was ever any reason to squash human beings like a bug, the decision makers at Abbott Labortories have provided a perfect one with their decision to increase the cost of the anti-AIDS drug Norvir by 500% (from $1500 to $7800 per year).

Source.

Thats just the tip of the iceberg. My anonymous emailer continued….

Any child already harmed by vaccinations does not deserve a second pharmaceutical insult, which is what Lupron will
do. TAP/Abbott is a filthy company, and thinks nothing about the harm they do to patients. It was just published how 800 people have died from another drug they make.

Pretty convincing stuff, I think you’ll agree. Its obvious that Lupron is manufactured by the same sort of bottom-feeding evil scum Big Pharma types that inject autism-causing thiomersal into healthy babies. My anonymous emailer continued:

It just horrorfied me to read about these kids being encouraged to take this drug. Do you know, there was a National Lupron Victims Network with over 2 million hits that suddenly just disappeared off the net? The data is on Way Back Machine or Archive.org under “lupronvictims.com”. We have Abbott employees who follow us around the internet trying to discredit us. It’s like science fiction.

So I checked it out – the domain ‘lupronvictims.com’ was registered in August of 1999 and is hosted by Forest a Seattle company – the same city that the domain registrant specified. I’ve sent an email to the admin contact at Forest to enquire about why the site vanished in early 2005 but have thus far recieved no reply.

As proponents of the Simpsonwood conspiracy will readily recognise, this reeks of corruption and Big Pharma meddling.

The site is indeed archived on the WayBack Machine but fascinatingly, even though the Way Back Machine continued to archive up until March 2005, one has to go back to late 2003 to find actual archived content. the most complete archive is the first one from 1999.

And still my anonymous emailer had more to say:

Whether this happens to all patients I don’t know, but I do know there are many, many people living in hell from using it. Some of us have contracted terrible deseases from having our immune system compromised, and we all battle many diseases: CFS, Fibromyalgia, EBV, arthritus, severe memory problems, clinical depression, liver problems, high cholesterol, trabecular bone loss creating disc herniation and osteoporosis, etc.

She also mentioned the name ‘Lynne Millican’:

In 1999 I went public in the Boston Herald with my story trying to prevent more poisonings. One person, Lynne Millican, has testified before the senate. We have fought and fought to bring awareness to no avail.

A quick search reveals some impressive sources:

When we first met Lynne Millican in January, when this series on Lupron was launched, we learned that she still suffers a range of serious ailments more than a decade after injections of the drug, Lupron, for treatment of endometriosis. Millican, a registered nurse and paralegal, believes her problems are associated with Lupron. Millican’s numerous symptoms have included the development of a noncancerous tumor, breast cysts, cardiac arrythmias, pain, dizziness, swelling and fatigue. She is one of many women treated for endometriosis who have complained over the years about these and other lingering symptoms they believe are related to Lupron. Other symptoms include depression and confusion, bone pain, vision loss, high blood pressure, and nausea.

Red Flags Weekly

“There are thousands in the United States who say they have been victimized by this drug,” Millican said, emphasizing that symptoms can be severe, such as tremors, seizures and memory loss. “Many women I know say their symptoms didn’t stop when they stopped taking the drug.”

Mercola

Proof indeed. My anonymous emailer closed with the following:

They just got bagged doing the same dirty tricks in England that they were levied the largest fine in US History for doing
here. They have so much money they just pay everyone off. Get the word out. Prevent more poisonings because the FDA does not care.

I think supporters of the thiomeral/autism connection will testify to the truth of that. The FDA are in the pocket of Abbot Labs, Big Pharma Agents of the Apocolypse.

Truly, its stupid to put Lupron into kids. When their bodies start to break down, we can all march on Washington – the placards will read ‘It was the Lupron, stupid’.

No need for science. No need for investigation. As a regualr commenter here says ‘Because its obvious…’

The Geier’s Go Dumpster Diving Again

28 Feb

In their increasingly forlorn looking attempt to get some kind (any kind!) of connection between thiomersal and autism, the Geiers launched a new paper. Announced in the Schafer Mercury Report as follows:

The study, published in the Journal of American Physicians and Surgeons, a peer reviewed journal, by Dr. Mark Geier and David Geier examined two independent databases maintained by the government – one national and one state.

Oh-ho…..the infamous Journal of American Physicians and Surgeons. Described as:

The Journal of American Physicians and Surgeons seems to be little more than a conservative publication gussied up with a medical spin. A look at the references in the illegal-alien report, written by Madeleine Pelner Cosman — a “medical lawyer” whose previous claim to fame appears to be a book on medieval cooking but who has also written an article for a group called Jews For The Preservation of Firearms Ownership — is chock full of hardline conservative cites, including books by Michelle Malkin and former WND writer (and Slantie winner) Jon Dougherty and articles by Phyllis Schlafly and Tom DeWeese.

Source.

And the peer review process is commented on thusly (source as above):

The latest book by Ann Coulter is also reviewed, which claims that _”Liberalism (socialism), one of the most disastrous sets of ideas ever conceived, is at war with civilization.”_ Makes one wonder about the peer review the journal claims to have.

Not a very encouraging start.

But what about the meat of the Geiers report? Is it any good? Here’s where the Geiers get their data from:

A two-phase study was undertaken to evaluate trends in diagnosis of new NDs entered into the Vaccine Adverse Event Reporting System (VAERS) and the California Department of Developmental Services (CDDS) databases

Oh dear. Looks like the Geiers Have gone dumpster diving again.

These sources are terrible. The VAERS is not intended for this purpose, a fact spelled out in big bold type on its page:

…..Therefore, VAERS collects data on any adverse event following vaccination, be it coincidental or truly caused by a vaccine. The report of an adverse event to VAERS is not documentation that a vaccine caused the event.

Source.

Dr James Laidler has this to say about VAERS:

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database. Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Source

He goes on to say (source as above):

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports..

As for the California data, the Geiers are simply reproducing the same mistake that Rick Rollens made before them. A simple question to David Kirby would’ve revealed that the California data can only be reflected accurately in cases of 3-5 year olds, whereas the Geiers state they studied:

The *total* new number of autism reports received by the CDDS

Geiers.

This material was covered at the start of this very year.

And these people are apparently scientists. To paraphrase a friend – ‘if they walk like ducks, sound like ducks…’

Quick Quiz

24 Feb

I came across an interesting post on EoH today. Its interesting for lots of reasons, notably its misrepresentation. A few of the responses (from Erik and Wade notably) referred to me so I thought I should at least grace them (and the op) with a reply.

_QUICK QUIZ:_
_Which physical symptoms should be ignored in children with mercury- induced autism, so that their parents can “celebrate their neurodiversity”?_
_1. Chronic burning diarrhea_
_2. Constipation with grapefruit-sized blockage_
_3. Intestinal diverticuli_
_4. Seizures (petit mal, grand mal, tonic, clonic)_
_5. 75% under normal body weight_
_6. Lesions lining intestinal mucosa_
_7. Esophineal esophagitis_
_8. Food texture sensivitiy and swallowing difficulty_
_9. Asthma and reactive airway disorder_
_10. Allergies to foods, fabrics, toys_
_11. Immune dysfunction_
_12. Chronic sinus infections_
_13. Chronic upper respiratory infections_
_14. Cycling viruses_
_15. PANDAS (strep)_
_16. Vitamin and mineral deficiencies_
_17. Yeast overgrowth_
_18. Kryptopyrrole overload_
_19. Phenol sensitivity_
_20. Liver and kidney stress_
_21. Precocious puberty_
_22. Thyroid malfunction_
_23. Brain lesions with demyelination_

_If I missing anything, please find more from the Autism Research Institute, Thoughtful House, Autism Treatment Network, HRI+Pfeiffer Treatment Center, or the hundreds of doctors treating these children’s physical disorders._

_Inevitably some people reading the above list will still deny the existence of our children’s physical pain despite medical tests and observational data from tens of thousands more. As the adage goes, there are none so blind as those who will not see… when their personal filter of communication becomes a cataract._

_Perhaps at no other time in history has it been so common that when truth is not expedient, people create convenient fictions. Rather than actually witness or try to help, it’s quicker to indulge inlurid oppositional imaginings from the comfort of one’s home. This denial perpetuates the suffering of children, and that is morally indefensible._

_Nancy Hokkanen_
_Minneapolis_

OK, so first lets answers Nancy’s question _”Which physical symptoms should be ignored in children with mercury- induced autism, so that their parents can “celebrate their neurodiversity”?”_

The answer to that would of course be ‘none’. Where on Earth did anyone get the idea that ignoring things like chronic diarrhea or Asthma is part of neurodiversity? My own daughter is Asmathic, as is my son, I can assure you I don’t ignore their asthma. Such a belief indicates either a lack of reading or comprehension ability – or more likely, a propensity to not have actually ever read up about the subject one’s discussing. From the Neurodiversity Wikipedia entry:

Most supporters of neurodiversity are anti-cure autistics, who are engaged in advocacy. In addition, some parents of autistic children also support neurodiversity and the view that autism is a unique way of being, rather than a disease to be cured. Such parents say they value their children’s individuality and want to allow their children to develop naturally. According to proponents, autistics may need therapies only to cure comorbid conditions, or to develop useful skills.

And thus we come around once again to the issue of comorbidities. In a response to the above post, Erik said:

As one of our favorite folks in the “ND” crowd likes to say… all those things are just “co-morbidities.”….Please…

And Wade said:

As I have asked our friend about his use of that term, if comorbidities are the cause of the dysfunctions by which our children are being diagnosed, can we really call them comorbidities?

Truncated source.

So yet again – misrepresentation.I have never claimed *all* those things are comorbidities. Its quite clear that some of those listed have no relationship to autism at all and (for example, precocious puberty) are only in there to justify the use of quacky therapies.

However, its easy to tell if a person is autistic because they’ll have met the diagnostic criteria for autism – if they meet the diagnostic criteria for having Asthma then guess what – they’re asthmatic! If they meet the diagnosis for precocious puberty then guess what? Thats what they have!

What about Wade’s point that these comorbidities are causing the problems leading to diagnosis? Well there are several issues with that. If someone is getting a diagnosis of autism if they exhibit some or all of the above list then the diagnosing Doctor is clearly off his or her trolley. If the Doctor is saying – ‘your child is on the spectrum and they also have several comorbidities’ then thats something else entirely. What Wade is essentially postulating is another, seperate form of autism that Nancy calls ‘mercury induced autism’. Of course, this is just circular reasoning – these symptoms are attributable to mercury, my child is on the spectrum therefore mercury caused my child to be on the spectrum.

If we want to ascribe a whole new type of autism to these kids then we have to do the science. The first step is ‘can mercury cause autism’? Without that step, the whole thing comes crashing down. And so far, there is no evidence it does. the symptoms of traditional mercury poisoning and its variants such as Pinks Disease bear no relation to the symptoms of autism – *and neither do they bear much relation to the list Nancy made* that I quoted above.

So on what basis, other than a belief that it did amongst a minority of parents, can we accept the possibility that mercury causes autism? Thats not to say it definitely doesn’t of course but its certainly not looking good at all as a theory.

Then, sadly, Nancy ruins the fun and gets all moralistic:

Perhaps at no other time in history has it been so common that when truth is not expedient, people create convenient fictions. Rather than actually witness or try to help, it’s quicker to indulge in lurid oppositional imaginings from the comfort of one’s home. This denial perpetuates the suffering of children, and that is morally indefensible.

Well, I certainly have no problem with that first sentence – I think the targets Nancy and I have are oppositional however. And where exactly is anyone denying the suffering of children? This accusation gets leveled time and time again and I’ve yet to see anyone who postulates it actually back it up. If your child is Asthmatic, like two of mine, I know exactly how nasty and scary it can be. All I’m saying is that saying asthma _is_ autism – that the former can be used to diagnose the latter is wrong.

So to recap – if your child has a diagnosis for all of the above (and I mean a diagnosis from an actual Doctor, not a quack who’ll wheel out a diagnosis because they’re ‘excited’ about trying their brand new pet theory out) then go right ahead and treat them – to do otherwise would be insane. However, don’t make the mistake of thinking that a diagnosis of these things is equitable to a diagnosis of autism.

A Means To An End

28 Nov

And so, the latest fire-storm in the autism blogosphere continues to rage. If you’re unaware of the story I’ll offer a brief recap (as unbiased as I can make it) before trying to offer up some commentary.

Briefly, JB Handley of Generation Rescue bought the domains supportvaccination.com, oracknows.com and autismdiva.com. Why? I don’t really know. On a practical level they can’t be doing him much good at all so one is left to consider the possibility that he did it as either a joke or to be spiteful. I sincerely hope that the team who is working on his search engine marketing hasn’t recommended that he does stuff like this as if they are then they’re moving him into the realms of what is termed as ‘black hat SEO’ – this refers to doing lots of bad stuff that is against acceptable internet policy to get a good rank on a search engine results page. The penalties for this can be severe if search engines catch you at it and include blacklisting the sites in question and terminating any associated AdWords accounts. From what I know of JB he loves to push the envelope a bit so I wouldn’t be surprised if he is doing this. He is playing with more fire than I think he knows about though.

Anyway, the unsurprising upshot of this is that most people on ‘his’ side of the debate think that a) his methods are questionable but seeing as he’s promoting such an important message the ends justify the means or b) that its downright hilarious. People on ‘my’ side of the debate (please note by using the phrase ‘my side’ I’m not assuming ownership of it) think that a) its all very childish and a bit sad or b) that what he’s doing is tantamount to willfully misleading people.

What are the definite results of JB’s actions? Well, he’s polarised two sides that were beginning to listen to each other a little better. He’s created a new battlefront where none existed before and he’s upset people.

Lets look at JB’s sides claims that even though his methods are questionable that its OK as the message he’s relating is so important the end justifies the means.

First, that is a very dangerous argument to apply to anything. If we call ourselves a society that has a moral base then ‘the ends justify the means’ is at best, ambiguous as a reason.

Secondly, lets look closely at what JB’s message actually is to see if it is indeed justifiable to use methods such as these. Lots of people, particularly JB’s supporters either don’t know or seem intent on ignoring JB’s message. It is this: autism is mercury poisoning. Not _may be_ , not _in some cases_ , not _might be triggered by_ but simply *is*. Now and forever. This is an absolutist position and its the main thing about Generation Rescue that I believe it is imperative to challenge. Why? Because autism is *not* only mercury poisoning. The vast majority of the information on the GR site revolves around the idea that thiomersal in vaccines causes autism. Lets leave the debate as to the scientific validity of that belief to one side for now. I’m quite happy to entertain the possibility that he may well be right. I’m equally happy with the science that as of this time, states that he is not. For my argument – its irrelevant. The fact is that even if JB is right and thiomersal does cause autism _it is not the *sole* cause of autism_.

Big deal say people – why does that matter? It matters because if that viewpoint comes to be accepted fact then the standard treatment for autism will become chelation. And seeing as it is a verifiable scientific fact that autism existed _long_ before thiomersal was ever used this would mean that there were a very large number of autistic children undergoing chelation totally unnecessarily. Question: Is it stupid or clever to subject children to unnecessary medical procedures?

The irony of this message is that it is a standard complaint of the mercury = autism belief system that they couldn’t get their Doctors to look beyond their narrow treatment options. This is _exactly_ what will happen should mainstream medicine ever accept the GR viewpoint that autism is mercury poisoning to the exclusion of everything else.

Let me reiterate once more – I have no issue with any group that calls for more investigation into the use of thiomersal in vaccines and that I’m glad that it is no longer in vaccines. I also fully accept that there are occasions that vaccines have damaged children. I also fully accept that mercury is a known neuro-toxin. What I do not want however, is for my daughters treatment to be a) enforced and b) an unnecessary and dangerous procedure when there is no basis for such absolutism.

So I ask you again Dear Reader – is JB’s absolutist message so good that it justifies his actions? Lets not forget that his actions also include name-calling (JB referred to friends of mine as ‘trailer dwelling coo-coo’s’ and me personally as a ‘wanker’ – a phrase for the non Brit-slang understanding amongst you that means that JB believes I masturbate to excess – roughly equitable to ‘jerkoff’ in US parlance I believe). This is as well as buying up domains that belong to sites that disagree with him.

Many claim that JB has apologised (although I fail to see where he apologised to me) and thus should be forgiven. I agree and disagree with that. I agree that for the debate to progress we all need to forgive and move on. However, this is not a one-off circumstance for JB. This is his MO. At some point, we have to stop making allowances and start holding people to account.

That said, up until this incident, I believed JB’s latest apology was sincere. I still hope it was.

People have also referred to JB’s behaviour as a bull-in-a-china-shop and expressed admiration for his go-get-em approach. I can’t see how such an approach is particularly admirable. Bulls loose in china shops breaking everything indiscriminately and certainly I feel less sure of the shaky common ground that had just started to be secured between the two sides. Lets also not forget _my_ message: that autism is not solely thiomersal poisoning and that bulls loose in _that_ particular china shop run the risk of doing very great damage to the delicate objects inside it.

Now lets move on to the point about upset. People from JB’s side of the debate cannot seem to understand why this action has upset Camille so much. As she is very much smarter than me she doesn’t need me to speak for her but I do wish to add my opinion as to why whats happened might cause her distress.

As a blogger who comments particularly on the science behind the debate she stands or falls on the accuracy of that science. If anyone was misled into thinking she endorsed the GR view then that person may well have further doubts about her validity. I hesitate to speculate as to whether or not that might be one of the reasons JB did it of course.

Secondly, there is an issue here of implicit control. An ugly image is called to my mind of a rich businessman laughing uncontrollably at the image of a less affluent woman as he dangles her on puppet strings. Fanciful? Yes. Exaggerated? No doubt. Based in some element of truth? I’m afraid I think it is.

Thirdly, again, lets look at the GR message and think about why those who are autistic particularly might not want to be associated with it. They believe GR is wrong. Further though, they see GR reducing who they are to a set of mercury related symptoms. Lets not forget that GR believe that autism is *only* mercury poisoning.

Once upon a time (in fact less than 40 years ago) psychologists ‘knew’ that homosexuality was *only* an illness that could be ‘cured’. How do you think that – at the time – that made gay people feel? Imagine a blogging community of parents desperate cure their gay adolescents (who ‘know’ that their children are just ill) – would gay adults be horribly offended and fight back? Or would they sit on their hands and do nothing?

For us parents, the outcome of this debate is very important – our kids depend upon it. For those people who are autistic, the outcome of this debate is absolutely crucial. Their continued survival depends upon it. I ask you once more: in an area of such vital importance, is the method really unimportant when the method denigrates so much? Is it something to be brushed aside as we smile indulgently at its instigator when its tantamount to an attempt to control a debate that affects peoples very right to exist?

Is this message so right that such a total lack of respect for a differing view is at best readily embraced and at worst tolerated in the way we would tolerate a favourite but slightly spoiled child?

What Am I Missing?

13 Oct

JB Handley, golden boy of Generation Rescue recently spoke to another newspaper. I thought the reporter did a very good job of showing both sides of the issue (Kirby, Olmsted take note).

I did however, have to read the article a few times until it sunk in. These were the passages that confused me.

Jamie’s moods progress fluidly from joy to concentration to panic. He has full run of his parents’ sprawling home, a hypoallergenic realm with wool carpets, insulation made from blue jeans and HEPA filters to clean the air.

One afternoon this summer, Jamie dragged his father by the finger to a mattress in the middle of the basement floor and, holding onto both of his hands, began jumping up and down, lofting higher and higher with each leap. The game was an autistic obsession. The blond boy sprang up again and again, never tiring, his face frozen in an expression of total joy.

Jamie eventually moved from the mattress to his train set, another obsession, and later to the table, where he covered reams of paper with spiraling circles, using his teeth to uncap each pen in the box until all the lids and pens lay on the floor where he cast them aside. All the while, he didn’t speak a word.

Three months later, Jamie had learned to point at things he wanted and to wave goodbye. He still screamed shrilly, ran back and forth, and didn’t speak in front of a reporter. His parents have augmented the biomedical regimen with other treatments—speech and occupational therapy and applied behavioral analysis, an intensive program that teaches autistic children to mimic “normal” behaviors, like waving goodbye.

So what am I confused about? Well, Jamie sounds exactly like my child. She does all the things Jamie is listed as doing above. In fact, in terms of her progress, she sounds ‘further along’ than Jamie. She has a few words now and the beginnings of a sentence or two although of course, like Jamie she has setbacks and meltdowns.

In fact the only appreciable difference between them as far as I can tell is that JB and Lisa chelate Jamie and we don’t chelate our daughter.

As I say, I’m totally confused. I thought chelation was supposed to ‘cure’ or ‘reverse’ autism? I was expecting to read about a Son-Rise style reversal where Jamie is verbal, engages constantly with the reporter etc. What I’m reading here is the normal progression of an autistic child. Now, granted I don’t know the exact program that Jamie is on but I know he must’ve been on it for a few months now. I’m also aware that he’s on TD DMPS. Read into that what you will.

I don’t mind admitting I’m a bit shocked by this. I was curious as to what a ‘recovered’ autistic child would be like and now it seems I have my answer – they’re just like an autistic child but without the sometimes painful comorbidities. If the Handley’s have removed those painful comorbidities then they’re to be congratulated. I am, however, at a loss to explain their statement that:

evidence that their cure is working can be seen in Jamie’s behavior

Cure for what? Mercury poisoning? Possibly. Autism? I really don’t think so. I didn’t before but I’m even less convinced after reading this.

The Answer To Autism?

4 Oct

Yesterday, the Herald published a story about how they may have ‘the answer to autism’.

It turned out that it was a story about an upcoming conference in October run by the charmingly named Action Against Autism. My US readers may be very familiar with the speaker list.

The Herald article came out with some choice quotes such as:

…in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it but the facts do appear to substantiate it.

and

According to McCandless, one of autism’s primary triggers is a direct injury to the gastrointestinal system through over-vaccination and use of antibiotics

So I decided to write them an email detailing the _actual_ facts as oppose to the _respun_ facts:

Sir,

I would like to respond to your very unbalanced and misrepresentative article regarding autism, its status as an ‘epidemic’ and the likely causes and treatments of autism.

In your article you state that:

In other countries, most notably the US, the situation is even worse, so much worse, in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it
but the facts do appear to substantiate it.

You are actually in error. The facts (by which I mean scientific, peer reviewed evidence) indicate there is *no* epidemic of autism. There is an increase in numbers but that does not indicate an increase in prevalence. A recent article in New Scientist provided a good overview of the situation including the results of the latest research into the subject but I wish to quote from it below:

One team, however, is ahead of the game. Back in July 1998, Fombonne and Suniti Chakrabarti of the Child Development Centre in Stafford, UK, started screening every child born in a four-year window (1992 to 1995) who lived in a defined area of Staffordshire, 15,500 children in total. As a result, they established baseline figures for autistic spectrum disorders – about 62 per 10,000. Then they did it again, in exactly the same place and exactly the same way, this time with all the children born between 1996 and 1998. In June this year, they reported that the prevalence of autism was unchanged (American Journal of Psychiatry, vol 162, page 1133). “This study suggests that epidemic concerns are unfounded,” concludes Fombonne.

The use of the term ‘epidemic’ to describe autism is an insulting and derogatory term to apply to a whole subsection of people. It has connotations way beyond its literal meaning and can only add to the misinformation and hysteria which already surrounds autism.

Some other speakers at the AAA conference include Boyd Haley, who once infamously referred to autistic children as suffering from ‘mad child disease’. On the back of the subsequent uproar, Haley claimed he had invented an acronym based on his belief that autism is in fact mercury poisoning. He said he was referring to *M*ercury *A*quired *D*isease when saying ‘mad’. Obviously a poor linguist, he failed to spot that when lengthened out, his phrase would read ‘mercury acquired disease child disease’.

The hidden agenda of AAA (and the vast majority of the invited speakers) is that autism is in fact mercury poisoning, received in the form of thiomersal in vaccines. They say that the thiomersal (used as a preservative in vaccines a few years ago) has somehow caused autism. They say this has given rise to an epidemic of autism. The science in no way whatsoever supports their position and in fact refutes it. No science has been done that indicates a causative link between thiomersal and autism and these ‘scientists’ inhabit the same murky world of quackery as Andrew Wakefield of recent MMR scandal infamy.

The reason I say this is that not only do these ‘scientists’ believe (in the total absence of proof) that autism is mercury poisoning, they also believe that a very controversial type of treatment – chelation (pronounced ‘key-lay-shun’) can ‘cure’ or ‘reverse’ autism. Again, they have no evidence for this belief – no science has been done on its efficacy. In fact, one ‘renowned’ chelationist Dr Rashid Buttar peddles a trans dermal form of chelation that come in the form of a skin cream. This cream has also never been tested for safety or efficacy. It is in fact highly unlikely to ever pass through the skin. Dr Buttar charge $800 for a consultation. He also believes he can cure cancer and reverse old age.

Recently, another form of chelation called EDTA-IV chelation killed a 5 year old autistic boy in the US . This procedure was carried out despite there being no link between autism and thiomersal, no real similarity between the symptoms of autism and the symptoms of mercury poisoning and no research conducted on either the safety of, not the efficacy of, chelation as a treatment for autism. One of the speakers at the AAA conference, Anju Usman, was the close colleague of Roy Kerry, the Doctor who administered th dose of EDTA to the five year old boy above.

On the other hand, research into valid, respectful and non-dangerous interventions has dwindled in this country. The figure for monies related to autism dedicated to this research is 8%. From that article:

UK research into the causes and treatment of autism is seriously behind that of other countries, a report says. It says the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder.

What I fear is two-fold. By pandering to this continuing association with vaccines, autism research risks getting sucked into a biomedical dead end. Its tempting to follow that path (and as Dad to an autistic child I did indeed follow that path for awhile) but it offers no answers and as evidenced above, that path can lead to some very nasty places. People lie in wait like predators, ready to take advantage of your ignorance and charge you to the hilt for the pleasure. I urge all parents to question the motives of anyone linked to the non-scientific treatment of autism. There is often a heavy financial price to pay and sometimes a heart breaking non-financial one.

My other fear is that by allowing people like this to discard our autistic children as the results of an ‘epidemic’ or a ‘living hell’
or to describe our kids as ‘lost’ (my daughter is right where I left her!) we create even more negativity about a condition that already carries a heavy load of stigmatising misinformation. What I would hope for my daughter is that she remains free from people attempting to ‘cure’ her and that we as a society can progress to a point where people like my daughter can be free to be who they are, receive treatment for the debilitating accompanying conditions that sometimes come with autism and that autism can be seen as a difference more than a disability.

Thanks for your time.

###ends###

They mailed me back thanking me for my email and asking for my postal address so they could consider it for publication so I’m hopeful someone somewhere will read it and think twice.

Autism Gene Found

18 Jul

UCLA geneticist Rita Cantor has found an autism gene according to Discover (via American Journal of Human Genetics). Thats pretty big news on various levels.

Firstly, it going to be something of a blow to JB Handley and Generation Rescue who says that autism is *nothing* but mercury poisoning. I look forward to seeing his retraction. It’ll also be a bit of a blow to all those who follow in Handley’s wake like Lujene Clarke, Wendy Fournier et al who’ve staked their entire reputation on autism being environmental in its entirety. Lujene Clarke is on record on this very blog as stating this. In fact, anyone who’s claimed that autism cannot be genetic will today be cutting themselves a large slice of humble pie.

Except they won’t. Someone somewhere will probably ferret out that Rita Cantor’s Mums Milkmans cat once knew a bloke who knew someone who walked past the office of a ‘Big Pharma’ corporation once and that therefore the results are tainted. Everyone knows that everyone who doesn’t believe in the autism/thimerosal hogwash is in the pay of ‘Big Pharma’.

Even if they can’t ferret out a connection they’ll simply not listen. Or care. For these people, particularly those on the Evidence of Harm list, this isn’t about their kids anymore, this is about politics and winning.

Secondly, we have to be very very careful how we use this knowledge and how its applied. These does set the store out on genetic testing for autism. Obviously this would be quite a long way off just yet but its almost a certainty now. These begins to raise certain ethical questions regarding the morality of testing for things like autism or Down’s Syndrome and what happens to those in whom these differences are detected as well as at what stage of life (before or after birth) they are detected.

Further reading.

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