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David Kirby – what have you done?

20 Dec

I want to follow up somewhat on Joseph’s techncial takedown of David Kirby’s recent act of intellectual suicide. On the Huffington Post he wrote a bewildering post called ‘Bad News for Mercury Defenders‘ which discussed how Dan Olmsted’s recent sleuth-like skills led him to talking about a report that undermined studies conducted using VSD data.

Let us begin:

Next June, when the Vaccine Trial of the Century gets underway in Federal Claims Court, government lawyers will defend the direct injection of toxic mercury into infant children by repeating the well-worn mantra that “five large population studies” in Europe and the US have completely exonerated the vaccine preservative thimerosal as a possible cause of autism.

My, my – vaccine trial of the century eh? I’ll have to remember that one when the verdict comes back. This is crap. No lawyer will have to defend the direct injection of mercury into infant children. What they will have to do is counter the accusation that thiomersal in vaccines caused autism. Kirby (as usual) presents a highly distorted view to his adoring fans. The truth is that as in all legal cases, the burden of proof lies on those making the accusation. The accusation is not that mercury is dangerous. the accusation is that it caused autism.

Again:

The VSD study is constantly held up by public health officials as EXHIBIT A in the defense of injecting mercury into little kids.

No, its not. If its held up as anything, its held up as a study that refutes the link between thiomersal in vaccines and autism. Seriously – isn’t this man a journalist? What’s difficult to grasp about this concept?

Kirby goes on to diss the remaining studies and surmises this section of his blog thusly:

With so many holes shot through their “five large studies” defense, the government lawyers will be left to argue that autism is purely genetic, that there is no environmental component, and that the rates of illness have not “really” gone up. We are simply better at recognizing and diagnosing the disorder, that’s all.

Well, if that is the case, the mercury-defense lawyers should have no problem proving it. All they need do is produce irrefutable evidence that 1-in-166 American adults of ALL ages (and 1-in-104 men) fall somewhere within the autism spectrum disorder, at the same rate as kids. But they can’t, and they won’t.

I can only surmise that Kirby is a big fan of the Wizard of Oz and had strawmen on his mind whilst writing this. Yet _again_ he fails to grasp the fact that what this trial is about is simply if thiomersal caused autism. All the vaccine makers have to do is refute the ‘science’ from the other side. And lets be honest, after the RhoGAM smackdown that’s going to be about as difficult as falling off a log. It’ll be surprising if any of the ‘scientific’ evidence ever gets past a Daubert hearing as it failed to do in the RhoGAM case.

And whilst we’re at it, no one has said anything about arguing autism is purely genetic. Why in Gods name would _that_ be required? Autism may well have an environmental component – I know I think it does – but unless Kirby is trying to say that the word ‘environment’ is interchangable with the word ‘vaccine’ then this is also just…meaningless.

And lets get back to the clinical science for a moment:

Instead, one must also consider biological studies (animal, clinical, test tube) when assessing causation. And that’s where the plaintiffs will come to court armed with reams of published evidence – produced at Harvard, Columbia, Davis, etc., and printed in prestigious journals – to suggest a highly plausible biological mechanism that would link a known neurotoxin with a neuro-developmental disorder

Has no one broken the news of the thiomersal/RHOGam/autism case to Kirby? _All_ the ‘science’ that Kirby is talking about here was brought to that trial (follow the link and you can download the entire Daubert findings and read the studies presented for yourself) and was cumulatively dismissed. Here’s what the presiding Judge stated:

However, upon being subjected to extensive cross examination, much of Dr. Geier’s analysis, based upon his collective review of a motley assortment of diverse literature, proved, in the Court’s view, to be overstated……[Dr. Geier] could not point to a single study that conclusively determined that any amount of mercury could cause the specific neurological disorder of autism.

So, that’s exactly what effect eliminating VSD based studies will have on the respondents case. None whatsoever.

But what about the plaintiffs? They have to prove beyond reasonable doubt that thiomersal in vaccines caused autism. And as Kirby helpfully points out:

….They wanted to know if the US database, the Vaccine Safety Datalink (VSD), could be used to compare autism rates in kids before, during, and after the gradual removal of thimerosal, which began in roughly 2000.

Unfortunately, the answer was a resounding “not really.” A laundry list of “weaknesses” and “limitations” associated with the database would render such a comparative analysis “uninformative and potentially misleading,” the panel said, (though it did suggest some excellent ways to re-approach the data going into the future).

Some weaknesses had to do with changes in medical practices over time. But many of the limitations sprang directly from the poorly designed VSD study itself….

So what studies could be killed off by this examination. Well, there are two actually. The first one is Verstraeten et al (2000) which is the one we’ve been discussing so far and Kirby’s been bashing. The other one is Geier and Geier (2005) which they plagiarised from Verstraeten et al (2000). Oops.

Why does the nuking of Geier matter whilst the nuking of Verstraeten does not? Burden of proof, which lies with the prosecution. The Geier paper will be used to help _establish_ causation which is vital, not prove it didn’t happen, which is not called for. The Geier paper (which was crap anyway, lets face it) has now been neatly and effectively taken out by Olmsted and Kirby. Don’t Americans refer to that as friendly fire? By removing Geier 2005 from the playing field, the prosecution are now left with clinical science which has already failed one Daubert hearing (I believe the legal term is ‘setting a precedent’) and any epidemiological data they can scrape together from VAERS and CDDS.

As far as VAERS go, I’d like to remind people of my own experimentation with VAERS. And as far as CDDS data goes, lets remind ourselves one more time what Kirby has said about CDDS data:

“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.

And here, helpfully provided by Dad of Cameron are the ever-growing numbers in that cohort.

There’s also the small matter of The Simpsonwood Conspiracy. To quote Joseph:

….it completely undermines the foundations of the Simpsonwood conspiracy theory. You see, Verstraeten et al. were supposed to have found significant associations between thimerosal and neurodevelopmental outcomes beyond those that were reported in 2003. But now Kirby is endorsing a NIH report which says that ecological studies on the VSD database, specifically those done by Verstraeten et al., are likely flawed.

In other words, without the VSD data being good, the Simpsonwood Conspiracy is a non-starter.

Amazing.

Just Sayin’ Part VI

19 Dec

Porphyrins, autism and enviromental militia

4 Dec

You know those nature programs where they film sharks in a feeding frenzy? That’s what I’m reminded of when a new test or treatment appears on the radar of the mercury militia. First there’s one lone parent taking a chomp but after a few minutes there’s a whole school of them twisting, turning, biting indiscriminatingly.

Porphyrins are the New Big Thing amongst the mercury militia. Never mind that the sole paper that exists on the subject (pertaining to autism) contradicts the Holy Edicts of DAN! and also fails to note that some forms of chelation affect how Porphyrin’s are measured and further, that the lead author of the study acknowledges the substantial grey areas and unaddressed discrepancies in the paper. Full steam ahead Jeeves and don’t spare the horses.

In a nutshell, these people believe that Porphyrins can be used to give a very accurate measure of how much mercury (or other metals) are in someone’s system. They send their kids wee off to a lab in France to be analysed at €80 a pop. The French test is considered the best as they test for Precoproporphyrin which is supposed to be a specific marker of mercury. Never mind the fact that only one scientist has ever found this association.

So how’s it panning out for the mercury boys and girls? Here’s a series of quotes from the Yahoo ChelatingKids2 Email Group:

A fellow listmate had her son tested twice– once over the summer which showed he had no elevated metals, and one this fall that showed he did indeed have elevated metal levels. She has sent an email to the lab asking about the differing results and has not received a response. I believe she is still trying to contact them.

FWIW, my neighbor’s dad happens to be a porphyrin specialist here in Boston (believe it or not– how many of those are there??). He reviewed lots of info for me– Nataf’s paper, my son’s results that showed very elevated metals across the board– and said he would have rejected the paper for publication had he been asked to review it. He said that fecal, not urine, should be used to measure the porphyrin levels. I sent an email to the lab inquiring about this and also received no response.

It concerns me that if someone does one test and goes on those results, do we know that those are accurate. I hate the idea of implementing treatment on a child based on less than accurate info. It is hard to GET good info I realize on the toxicity issue but just wondering if this is reliable enough to trigger chelating a child etc.

The answer is ‘no’. Here’s another one:

I just received the results of the French porphyrin test for myself and my 7 year old NT daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!

Sadly, this parent was considering chelating her NT daughter anyway even though….

My daughter is terrified of oral capsules and blood draws after seeing what her brother goes through

I’ll bet.

What’s the cut off point when an honest desire to help someone based on love for them and sound science to underpin your decision becomes a dangerous chasing after any sort of unproven treatment no matter what the consequences might be?

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

We are basing our decisions on speculation, not evidence. 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.

Increasingly it seems facts aren’t necessary, because the tenets….are all about belief. It’s about whether you are going to be a sinner, or saved. Whether you are going to be one of the people on the side of salvation, or on the side of doom. Whether you are going to be one of us, or one of them.

That’s sad, worrying, dangerous. And true. When did we start to let PR driven media become more important and carry more weight than scientific fact? When papers scream headlines about the evils of mercury causing autism what is it about the apocalyptic way the story is written that catches attention? We live in a world where we think we see threats at every turn. This is a world where I cannot videotape my kids school plays any more as its considered ‘a security risk’. This is a world that now exists in biblical terms like ‘terror alerts’ and ‘axis of evil’. No one conditioned to this hysteria is going to listen to the scientists simply repeating the fact that no science supports such an assertion. That won’t give us a fix of melodrama – maybe if we portray these scientists as part of a global conspiracy that might quicken our terror-conditioned pulses a bit.

There are people who get their ‘facts’ not from scientists but from people like this man – an American DJ names Don Imus. He is, apparently, an autism advocate. He also seems to be something of a racist bigot.

If I have wishes for Christmas its that we stop listening to hyped-up media merchants like the odious Mr Imus and start listening to actual scientists regarding autism and its causes.

What the future holds

23 Nov

A recent MSNBC piece on autism entitled ‘growing up with autism’ was a well written, well researched and responsibly written article. It highlighted a worry that all parents of autistic kids have – the future. What happens when our kids become adults?

“Once they lose the education entitlement and become adults, it’s like they fall off the face of the earth” as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America…

The same is true over here in the UK as well.

The much discussed Combating Autism Act was to allocate US$1Billion to research and:

Grossman’s early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill shouldn’t try to take on too much…

A ‘consortium of activists eh?’ – lets not beat around the bush here. This consortium was the mercury militia – A-CHAMP, the NAA, SafeMinds, Autism Speaks, Generation Rescue etc. They wanted the money to go on research searching in vain for a link between thiomersal/MMR and autism. It didn’t quite work out that way, but its painfully obvious that they did manage to scupper the dire need of helping autistic adults.

However, advocacy groups vow that the moment the bill passes, government funding for adult services will become their next priority

Yeah, right. I’ll believe that when I see it.

There’s a whole bunch of people here who need to wake up to reality. Autistic adults have been in existence for any number of decades. My great aunt and great uncle, both born before 1920 were amongst them. The Autism Hub has some of them. They had no services beyond institutionalisation. Autistic adults currently have little to no services. This is not a new scenario and it behooves this ‘consortium of activists’ to put aside their short-sighted, unscientific agenda and step up to plan for the future. A mad dash for a non-existent cure helps no one except the quacks who’s pockets are lined.

So what could help? Well, Lee Grossman’s 30 page document would’ve been a start. The other thing of course is challenging perceptions.

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the gift of a meaningful identity. “If this was 10 years ago, my daughter’s classmates might say she’s the one who talks to herself all the time and flaps her hands,” says Roy Richard Grinker, an anthropologist at George Washington University and father of Isabel, 15. “But if you ask these kids in 2006 about Isabel, they say she’s the one who plays the cello and who’s smart about animals.”

The more peers of the same age group understand about autism, the more likely they are to be kind, caring and integrate them into community life.”

We need to start taking a long term view. This won’t be pleasant for some sections of the community to accept but we must stop looking at autism that something that affects children primarily. We must stop the headlong rush into dangerous, unproven ‘treatments’ that do nothing for autism and start looking at realistic ways we can move society and autistic people closer towards each other. We must start demanding more responsibility of those who elect to paint themselves as authorities on autism and then proceed to dehumanise autistic people with words like ‘poisoned’ and ‘epidemic’ and ‘train wrecks’. We must start to look skeptically at autism organisations who are actually single-issue groups promoting quackery.

We must start to listen to autistic people – adults – about service provision, about the future of autism advocacy. The one certainty in life is that children become adults. To ignore this issue is tantamount to burying one’s head in the sand.

DAN! – On a mission from God

9 Oct

The Exorcist

Back in 2004, a self ordained minister (well, technically he was ordained by his brother but seeing as the ordination happened at a ‘storefront church’ I’m going to go ahead and call it a load of old twaddle anyway) killed an eight year old autistic boy, Terrance Cottrell Jr, and was convicted of:

felony physical abuse of a child causing great bodily harm

The ‘minister’ was attempting an exorcism…:

..to remove “evil spirits” of autism from Cottrell. Hemphill, who weighed 157 pounds, described how he would sit or lay on “Junior’s” chest for up to two hours at a time, whispering into the boy’s ear for the “demons” to leave his body.

This ‘man of god’ decided to appeal (de rigeur these days for those who have no sense of personal responsibility) and in August this year, his appeal was happily quashed.

I’ve written before about this story but I’m bringing it up again as I was notified about something pretty incredible – at least to me.

Jeff Bradstreet – Man of God

Dr Jeff Bradstreet is two thing. The fist thing he is, is a DAN! doctor. The second thing he is, is an expert witness in the Autism Omnibus case to be held next year.

But in fact, Jeff Bradstreet is _three_ things. Just like that compassionate driver of autism demons Ray Anthony Hemphill of the above tragedy, Jeff Bradstreet is a keen advocate of Exorcism as a treatment for autism.

No, I’m not kidding. Here’s an email message from Holly Bortfield of a pro-chelation group ‘Autism Recovery Network’ made to the Yahooo Autism Biomedical Discussion (ABMD) group in Feb 2005, the group is not open to the public so you can’t read the original unless you sign up (if you do its message 49660) but I’ve linked to a screenshot of her message:

You certainly have a right to the opinion that Jeff [Bradstreet] is the diety himself, but as a former patient and friend to a number of former patients, I can assure you not everyone holds him in such high regard. If you’d like to check out list archives from 1998 and 1999 I bet you will find the discussions of his exorcism referrals (I kid you not)…

Screenshot

When someone on the list suggested the word ‘exorcism’ was too strong, Bortfield replied (message: 49764):

Honey, that was his word not mine. I can think of a dozen people he told to have their kid exorcised

And poster Larry Leichtman chimed in with:

Actually, I heard that from him myself. He is a true believer in the devil and exorcism.

Screenshot

And not only does DAN! offer exorcism, it seems the National Autism Association heartily endorse it, as this message (49765) from Jo Pike of the NAA in reply shows:

Well may[be] its working LOL! I’ve talked to so many parents who have told me their children are improving dramatically and they all give credit to their office. Bottom line is the outcome and it seems they’re helping a lot of families.

Screenshot

And Ricci, the owner and list-moderator for the ABMD board also voiced concern in a long list of troubling DAN! traits. Its too long to quote here (screenshot here, but the lsit included DAN! practitioners who:

1) Have had their licenses suspended for overbilling insurance companies
2) Have had their licenses suspended for substance abuse
3) Have pushed MLM (multi level marketing/pyramid schemes – outlawed in the UK I believe) and lied about their involvement.
4) Received their degrees from a diploma mill in a strip mall
5) Have treated children for conditions they didn’t have and ignored conditions they clearly did have
6) Charged outrageous fees (Ricci quotes $300 for a bottle of Japanese secretin one can buy onesself for $5)
*7) Have performed exorcism on their own autistic children and recommended others to do the same*

Frankly, this is a little more than disturbing. Its crazy. Here’s Jeff Bradstreet – who the Autism Omnibus lawyers are putting forward as an _expert witness_ recommending exorcism as a viable treatment for autistic kids.

How is this man still a DAN! Doctor? Are there really people out there who are happy about this person ‘treating’ their kids? Is the American legal system seriously going to make itself into a laughing stock by admitting this man as a viable expert witness?

Open letter to Raun Kaufman of Son-Rise

30 Sep

I read your press release today Mr Kaufman and I just wanted to pass on a few thoughts to you. Your PR piece for an upcoming tour of my country begins with:

Parents of autistic children around the world face daily prognoses of hopelessness. Recent media stories highlight this: In April this year, Alison Davies, 40, leapt to her death from the Humber Bridge in northern England, taking her 12-year-old autistic son, Ryan, with her. In the U.S., Karen McCarron, 37, killed her three-year-old autistic daughter, Katherine, by placing a plastic bag over her head and then tried to overdose on over-the-counter medication a day later. She faces two charges of first-degree murder.

Every day around the world, parents like these are told that their children will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.

I am sickened and angry at your attempt to ‘justify’ two murders by passing them off as the end product of some alleged hopelessness. Ryan and Katie were murdered. Nothing – I repeat, _nothing_ – can justify that or make it understandable and your attempts to coerce emotional empathy from people by using their murders in so baseless a way is an appalling and reprehensible act of moral cowardice and cynical emotional blackmail. Your message seems to me to be clear: come hear me speak or you’ll end up killing your kids.

I’ve had the honour to become close with Katie’s Grandad and I would like to speak from the position of adopted family: this is not appreciated, wanted or deserved. After Katie was killed, Mike contacted Stephen Drake to let him have some photos of Katie. The terms of their use was made clear:

They do not wish for the photos to be used in any way suggesting Katie’s death is associated with a “problem” arising from a lack of services, or a symptom of “desperation” felt by other families. Using Katie’s picture in these ways would only be an insult to her memory and cause more pain to an already grieving family.

Whilst you stopped short of usurping photographs of Katie, you did the next worst thing and usurped the memory her family have. What gave you this right other than the ‘right’ you took upon yourself to emotionally blackmail parents?

You owe the family an apology Mr Kaufman. I hope you can make it sound as sincere as your pious whining about hopelessness.

Shades Of Grey

19 Sep

Not Mercury wrote a great post on causes, cures and definitions of autism. The gist of which seemed (to me) to be that how we approach things depends mostly on how we define them but that unfortunately, definitions cannot exist independently of the subject matter and so the two things will have a continual and unending impact on each other. This makes it extremely difficult to have impartial debate.

This is especially true when one considers the medium we are attempting to debate over. I have never met _any_ of the people I consider close allies. Neither have I met _any_ of the people I consider to not be allies. We converse solely via a web interface. My job makes me painfully aware that this is not the best way to promote calm and relevant discourse.

There is also the added wrinkle that we are _all_ either autistic, the parents (or close family members) of autistic people, or people who work with autistic people. Or all, or some. This introduces an emotional component that is also unavoidable.

Leaving aside all thoughts of evidence, autism is (depending on who you speak to):

1) Mercury poisoning, ostensibly via thiomersal.
2) Vaccine related with maybe a genetic inability to excrete mercury, primarily gained from thiomersal in vaccines.
3) Genetic with a strong possibility of vaccine involvement, notably MMR.
4) Genetic with an unknown environmental ‘trigger/s’ which could include mercury.
5) Genetic with an unknown environmental ‘trigger/s’ but which currently is not indicated to be vaccine related.
6) Genetic.

That’s grossly simplifying the issues, I know that, but we have to start somewhere.

To me, options 1 and 6 are total non-starters. There’s no evidence to support these viewpoints and lots of evidence (academic and anecdotal if that’s your thing) to refute them. Also, to me, from a viewpoint of being a valid route of investigation, all other options are on the table. That is *not* to say I agree with some of them as theories, clearly I do not. I’m saying they have the potential to be correct. This is where the weight of evidence comes into play and we all make our choices depending on what speaks to us individually. I want to stay away from that evidence in this post. I want to try and focus on how our definitions influence our choices.

If we see autism as primarily an acquired thing which negatively affects people as a consequence of that acquisition then that colours our choices. We would want to remove the autism. Likewise, if we see autism as something that people _have_ but can be both negative as well as positive then that also colours our choices. We might want to remove the autism and accept the cost of losing the positives. Again, if we see autism as something that simply _is_ that has both negatives and positives then we may wish to retain the autism and try and work on the negative aspects.

So to me, the answer to Not Mercury’s post, is at its crux, the difference between something someone _has_ and who someone _is_. And how we arrive at that decision all originates from how we define autism. Advocacy undertaken by autistic people and their allies draws comparisons between gender, racial and sexual emancipation and their own neurology. Advocacy undertaken by non-autistic people and their allies paint autism as something medical to be defeated.

Having autism versus being autistic. Does it have to be an impasse?

It would seem that it does if we carry on in the same pattens. However, as long as we do this then ‘versus’ will carry on being the modus operandi of this debate.

Would it be an acceptable compromise to accept that _autism_ is a word used to refer to medical condition/s that may include such things as epilepsy, asthma, stomach/digestive issues etc etc and that _autistic_ is a word used to describe these very same people but is used to refer to who they are and _how_ they are?

We cannot escape that fact that the nature of autism often encompasses disabling comorbidities. But likewise we should not ignore the fact that autistic people have innate strengths and abilities that non-autistic people simply do not. Is it too much to ask that – *regardless of how someone came to be autistic* both these facts need to be addressed and accepted.

If someone is autistic because they are poisoned from a vaccine we still need to be very very careful regarding terminology. The fact that they are who they are is still worthy of respect and rights. If someone is autistic because of their genetic predisposition to autism and trigger X caused that potential to become fulfilled, then that reality is still worthy of respect and rights.

My video ‘Poison‘ caught some flack from people determined not to understand it. They said I was bashing the subjects. That I was taking them out of context. I was not. I did not.

However, someone else said I was taking them in the wrong spirit. That’s closer to the mark. That was intentional. Let me explain.

We cannot even agree on a definition of autism. Let alone decide how to approach treating ‘it’ (as a single entity). Hell, we haven’t even come close to knowing whether it is a single thing (doubtful). There are people on that video using some very strong, very ambiguous language. These are people who have made a point of going on TV, writing in newspapers, being interviewed on radio programs, speaking at conferences using this ambiguous language.

Not Mercury says, and I agree, that one of the things that is harmful and distasteful at the moment is people using language to imply something (and that something.s consequences) are well defined and well understood. They are not. As long as people keep giving people who are largely ignorant about autism the idea that they _are_ then ignorance flourishes amongst the people who need to understand autism the most – the people we want to accept us and our children. My child and my friends should not be demonised to further someone’s political points.

So one of the points (particularly to do with Boyd Haley, Brad Handley and Dr Geier) of the video was to hold up a mirror to the way in which ambiguous language can be used to further ignorance and bad feeling. Its become a Hollywood cliché but the saying that:

With great power comes great responsibility.

should be never more true when we consider using poorly chosen, stigmatising words to describe people. Kathleen’s petition regarding Boyd Haley’s poor choice of words is a case in point. I like to think my petition regarding Autism Speaks poor presentation and supporting justifications is also a case in point. Certainly the 800+ signatures Kathleen has received so far and the 500+ I have received bear testament that there are a lot of people out there who are very very tired of these dangerous words (Kristina calls them ‘fighting words‘) and the people who want to carry on using them to describe people.

This is not nit-picking or hair-splitting. Words have a power. Take the Pope’s recent little slip up. Did he mean to insult the nation of Islam? Almost certainly not. But he did. The reason he did is because words matter. The words chosen by Rick Rollens, Brad Handley and Boyd Haley are unbecoming of people who want to think of themselves as people concerned with helping autistic people. As I’m trying to illustrate, autism is more than a collection of medical comorbidities. Is there anyone who doesn’t think so? And if that’s true, as it surely is, then failing to use words that convey dignity, or at least using words that demean – regardless of intent – does the wider idea of advocacy no good at all. Our children and our friends are not helped by this state of affairs. We must do better.

Generation Rescue: Time To Come Clean

10 Sep

Generation Rescue Redefine Autism

JB Handley’s Generation Rescue created quite a stir when they first launched. They went with a simple, clear, easy to understand message. The first part of that message was:

So, autism is a misdiagnosis for mercury poisoning as per Brad Handley in February 2005. You heard the guy – if you line up one hundred symptoms of mercury poisoning and one hundred symptoms of autism they are exactly the same.

Which is why its odd to find a post on the Evidence of Harm Yahoo Group from one Bradford Handley dated August 30th 2006 which reads1:

Guys, it ain’t ONLY the mercury.

So in Feb 2005, autism is mercury poisoning. By Aug 2006 its not. Now, its apparently more. Lets not forget that Brad is also quoted as ‘refusing to admit the possibility he might be wrong2.

What else can Brad inform the viewing public about autism?

So at least now we know where John Best Jr gets his ridiculous ideas from. But even that poster boy for truly spectacular idiocy can have his idiocy exposed3 as I did when I got John to admit that:

Your 19th century autistics had genetic autism not MP.

True, he couldn’t see how this invalidated his belief that autism didn’t exist in the 19th Century (apparently ‘genetic autism’ isn’t autism – I know, I know, try not to laugh) but wow, Brad took it even further than John. Going on national TV and now internationally on the Web to reveal that he’s _more dogmatic and less rational than John Best Junior_ ! Something I have to admit, I thought was an impossibility.

Is there anything else Brad can tell us about the nature of autism?

All are poisoned. So the kids who have Rett seem to have flown past the end of Brad’s nose when he wasn’t looking. Same goes for the kids who’s mothers caught wild strain Rubella4 – just….never made Brad’s list.

Isn’t it reassuring that Brad and Generation Rescue are so informed and factual about autism? Can you imagine how it would be if we couldn’t trust him on an even _more _ important point such as treatment for example?

Generation Rescue and JB Handley’s Issues With Time

Notably, how they seem to be running out if it.

This interview was broadcast in Feb 2005.

We can tell two things from that. First we can tell that Brad says chelation will work in one to two years. Secondly, we can tell that Jamie Handley started chelation in September 2004. Or to put it another way, exactly two years ago.

And how sure is Brad of this ‘one to two’ years thing?

Wow – so maybe not even two years – ‘probably less’. And what should the ‘end result’ be? What should we expect?

100% recovered. Neurotypical. No different than their peer group.

Does anybody else think that, seeing as Jamie has been chelated for two years now, we should’ve seen a neurotypical Jamie Handley emblazoned across every media outlet Brad’s chequebook could open for? That we haven’t tells us something about Generation Rescue and their reliability as good sources of information.

But something else doesn’t ring true here either. Jamie Handley’s list of meds5. This is *daily* by the way.

Before Breakfast
B12 shot
Probiotic
B12 x 2, Xylitol nasal spray 2 sprays
TD-GSH 1/2 ML

With Breakfast:
Super Digestive Enzyme 1 capsule
Ora Pancreas, Grapeseed 1 capsule each
FolaPro In Juice 1/4 capsule
Intrinsic B12 in juice 1/4 capsule
Nucleotides in juice 1/4 capsule
EDTA 1 capsule
Horsetail Grass 1 capsule
Transfer Factor 2 capsules
Vitamin C 1/4 tsp (375 mg)
GABA 1 capsule
Liver Support 1 capsule
Ora-Placenta 1/2 capsule
RNA in water, alone 0.5 ML

After Breakfast
BH4 1 tablet, Swiss
CCK, Strep Cocktail, GSE, Caprilyic
DMG 1 tablet

With Lunch:
Super Digestive Enzyme 1 capsule
Ora-Adrenal 1/4 capsule
HHC Multivitamin 1 scoop
B Complex Sprinkle
Citrulline Sprinkle
Niacinimide 1 capsule
Quercitin 1/4 scoop
Sam-e 1 scoop
Cell Food Sam-e, Oxygen 4 drops, 4 drops
Magnesium Citrate 1 capsule
Grapeseed Extract 1 capsule
Vitamin C 1/4 tsp (375 mg)
Sphingolin 1 capsule
Pycnogenol 1 capsule
Fenugreek 1 capsule
RNA in water, alone 5 drops

After Lunch
Vitamin K, Vitamin E, SP, CoQ10, Flax
Mag (1), Zn (1), Molyb (2), SE/1 drop, K
CCK, NADH, ATP, DMG 1 capsule each
Strep Cocktail 1/2 tsp

With Dinner
Super Digestive Enzyme 1 capsule
Ora Pancreas, Grapeseed 1 capsule
GABA 2 capsules
Transfer Factor 2 capsules
Vitamin C 1/4 tsp (375 mg)
Carnetine 1 capsule
Gymnema Sylvestre 1 capsule
Curcummin 1 capsule
Vitamin D 2 capsules
EDTA 1 capsule
Riboflavin Sprinkle
Malic Acid 1 capsule
Horsetail Grass 1/2 capsule
Zen 2 capsules
Idebenone 1 capsule
Ambrotose 1 scoop
RNA in water, alone 5 drops

Before Bed
IMF5 1 capsule
Strep Cocktail, Candex, GSE 1/2 tsp & 1 capsule
CCK, Lactoferrin, Caprylic 1 each
Charcoal, Magnesium Citrate
EDTA Suppository

This is what Jamie Handley is given every day. Quite apart from the jaw dropping size of the (daily!) list (a list Brad says: ‘we created it through all of our reading and correspondence with other parents’) is the fact that surely a neurotypical child (as Jamie should now be after undergoing the requisite two years – probably less – of treatment) wouldn’t need such a list. Especially a list that still seems to contain chelators – although interestingly not TD-DMPS I note.

Sources

1: EoH.
2: WWeek.
3: Me.
4: CDC.
5: CK2.

Just Sayin’ Part II

28 Aug

Recovery Stories And A Dash Of Reality

13 Aug

Every now and again someone (usually Brad Handley) says that I’m wrong because they have recovery stories to prove they’re right. That the mercury poisoning that caused their child’s autism has been reversed.

My constant response has been ‘Really? Where are they? If any child recovered from autism it would be international front page news’. Nobody has ever replied to that question.

Generation Rescue

So I decided to go looking. As it’s Brad who usually bandies this assertion about I thought I’d start with the Generation Rescue site under the heading ‘success stories’. There are fifty-nine (59) ‘success stories’ on there in total which sounds pretty impressive until you actually read them.

Out of these 59 success stories, just 3 describe their child as having been reclassified as no longer meeting a diagnosis of ASD. That’s a ‘recovery’ rate of 5%. Interestingly, one of these cases states they did not use chelation at all. That puts the Generation Rescue chelation success rate at a little over 3%.

General Stories

NB: It should be noted I may be duplicating stories here. The GR site says it has gathered stories from around the web which _may_ include these other stories.

But maybe we need a bigger group of stories – not from Generation Rescue in other words – to try and get a bit of accuracy.

Let’s look at the ‘roll call of recovered kids on Autismnet and see what we can glean from it.

There are twenty three (23) kids listed in the table. There are four children who’s parents say they have lost their diagnosis. This is a 17% recovery percentage. Fascinatingly, only one of those kids (4%) used anything other than ABA. As far as _biomedical_ interventions go, that’s worse than the GR site.

Lastly, we’ll look at Dana’s view which also lists recovery stories. There are a lot of stories on this site but a careful look only reveals sixteen (16) that discuss kids on the spectrum – some discuss non-autism stories so were discounted. Towards the bottom of the page there are a number of duplicates (especially the videos and Scott Shoemakers son’s story is told twice) or kids I recognised from other pages. In the videos I watched, nobody really discussed diagnosis at all so I discounted those.

Of the 16 stories, one (1) says their child has lost their diagnosis to biomedical/non-ABA therapies. That’s a ‘success’ rate of 6%.

If we total all these stories up we get a total of ninety-eight (98) ‘success stories’ wherein a total of five (5) claim total recovery and their kids lose their diagnosis. That’s a recovery rate of 5.1%.

Other Methods?

By contrast, one ABA clinic reports a ‘success’ rate of over 50% whilst the original Lovass (1987) paper claimed a success rate of 47%. Even a more realistic and stringent look at Lovass’ (Smith et al 2000) revealed a success rate of over 13%.

The ‘recovery from mercury poisoning’ hypothesis ain’t doing so well in comparison.

Other methods that claim a good ‘recovery rate’ are AIT (from Bernard Rimland no less) and Son-Rise.

Then of course there are the uncounted kids who simply ‘recover’. In the introduction to his book Autism, Brain and Environment, Richard Lathe mentions three case studies of marked progression in kids. What’s notable about them is that their progress can be attributed simply time and the maturation process.

I further have no doubt that if I described my daughters typical day she would easily fit onto all of the ‘recovery/success’ stories’ web pages discussed. She wouldn’t be described as losing her diagnosis by any means but she easily meets or exceeds the progress made and attributed to chelation etc. Again, she’s simply growing and maturing.

Bottom line: a ‘recovery’ stat of 5% is meaningless in terms of indicating the ‘success’ of a theory. Turn it on its head and this means that its 95% unsuccessful.

There are no figures (or at least none I could unearth) that relate what percentage of autistic kids simply move off the spectrum without any fanfare – who just happen to be not autistic anymore – if anybody _does_ have some, I’d like to hear them. But here are a few interesting quotes from a variety of sources:

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.

Rimland.

It may be because of spontaneous recovery from whatever constituted their autism. I do remember meeting some older children and teenagers over the years who “used to be autistic”.

Donna Williams

This page states that:

Studies have shown that about 2% of the children will recover anyway, “spontaneous recovery” is the term used in these cases

But it fails to cite which studies claim this figure. However, its clear that:

a) Spontaneous recovery does happen
b) This possibility is not ruled out of the various ‘recovery/success’ stories.

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