Archive | June, 2006

If Someone’s Not Broke, Don’t Fix Them

27 Jun

National Public Radio in America aired a report about autism and the growing self advocacy movement today. I strongly suggest you download the audio and listen to the voices of autistic people.

Someone I know was interviewed – Amanda Baggs. Amanda has been an advocate longer than any of us I think. She’s smarter than me, she’s calmer than me, she’s more organised than me, she phrases things better than me. Along with Kathleen, I think Amanda is one of the best writers in autism related subjects. Different styles, different subjects, different neurology – same coherency.

Because I know Amanda I was looking forward to hearing her as much as I looked forward to hearing Autism Diva recently. That’s not to denigrate the other participants but its always good to hear the people you have formed a relationship with and who’s words have caused (and continue to cause) such a massive alteration in one’s thoughts and beliefs.

Amanda is one of those autistics that certain people don’t believe exist or can communicate – she is an autistic person who is typically referred to as ‘low functioning’ just like my own daughter. This is because she doesn’t speak. When you hear Amanda, you will hear her fingers on her keyboard. Here is a list of other autistic people who are non-verbal and considered ‘low functionning’.

When you read things written by Amanda (and other people) the idea that she is ‘broken’ or ‘defective’ or ‘a train wreck’ is laughable.

Here’s what Erik Nanstiel who believes himself part of the autism community had to say about Amanda:

Can I ask something of all of you here? Did you like to see her like that? […] I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime. […] I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided. […] when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine” with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.

He was referring to ‘the woman’ on the site Getting The Truth Out. At the time, for good reason, Amanda wished to remain anonymous and so Erik didn’t know who she was. He didn’t know that he had regularly interacted with this woman he viewed as ‘a great tragedy’ with the ‘lonely blank stares typical of autism’. He stated that there was a richness to life ‘she’ll never have because of her disabilities’.

Amanda herself (who one should assume might know a little better than Erik) says:

…my underlying point remains the same: It’s wrong to tell people to go off and reinforce their most destructive prejudices by meeting or viewing photographs of people like me, people like my friends, or people like my old classmates. I know that people meet us and don’t really meet us, they just meet their warped perspectives of pitiful awful lives that drain everyone around them and should probably have been prevented to begin with. I know that people view pictures of us and view only what is in their own minds about what our appearances mean, and how they don’t want their children to be like those people. It is wrong to tell people to do this to us, and to themselves. It would be better to tell people to look at who we really are, our real value in the world, and reinforce that, instead of reinforcing people’s worst views of us. It would be better to say that preventing a whole kind of person is eugenics of the worst kind, rather than saying “Just look at them, you’ll see why it’s better that there aren’t more of them.”

Don’t believe for a minute that most of us don’t understand on one level or another what it means to plan for a world without people like us in it. Don’t believe for a minute that “Just look at them” is an argument against our existence, or that there are any legitimate arguments against our existence. And watch what you say about us, we could be listening. 😉

Erik says in his quote that:

I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy

I would be proud beyond belief if my daughter grew up to have such a command of language, emotion, tone and justice as Amanda. Even if she didn’t I would still be proud. Megan’s favourite MP3 at the moment is the Podcast Autism Diva did – I would proud beyond belief if Megan grew up to have the same sort of principles and sense of justice as Autism Diva.

Amanda’s not broken. Autism Diva isn’t broken. Megan Leitch isn’t broken. They don’t require fixing.

Indefensible And Unprotested

26 Jun

The McCarron family and the Leitch family have become close over the last few weeks. We have never met. We have never heard each others voices. We have only seen pictures of each other and communicated by email but in that communication has been a sharing of warmth, emotion and desire to connect such as some people never seem to get in their lives. We have swapped addresses as well as photos and they know should they ever want to come to the UK they have a home here. We know that the reverse is true also.

And yet I wish it wasn’t so. A part of me heartily wishes I’d never spoken with Mike. I’m sure he feels the same. This is because of the circumstances that led to us meeting. The murder of his granddaughter, Katie McCarron. If I could ensure a return to life in the arms of her dad, sister and grandparents by swapping that for the friendship of one of the kindest, bravest families I’ve ever met then I would do it in an heartbeat.

Mike refuses to see Katie portrayed as a burden, or as someone in pain. This is because she wasn’t. He also refuses to let people directly or indirectly attempt to absolve Katie’s killer by making murder the responsibility of an uncaring society. This is because it wasn’t. It was murder.

Recently, Stephen Drake of Not Dead Yet, wrote a press release calling for restraint when reporting these kind of murders – i.e. murders of disabled kids.

Researcher Dick Sobsey has documented an increase in the murders of children by their parents in Canada in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person. More space should be devoted to grieving family members than sympathetic friends of the accused killer.

And yet, yesterday, the Chicago Tribune released a piece of journalism that can be best described as callow.

The piece starts off by portraying members of the mercury/autism connection as the inheritors of the sort of stigma that those who actually were persecuted by Bettlehiem underwent:

It has been nearly 50 years since mothers shouldered the blame for their children’s autism. Yet for many parents, echoes of that painful era remain……

In the 1950s and ’60s, the medical community accepted University of Chicago psychoanalyst Bruno Bettelheim’s assessment that “refrigerator mothers”–those with a supposedly cold, unloving demeanor–brought on their children’s disorder.

Although we now know that autism is a neurological disorder and not the result of bad parenting, the exact cause remains a mystery.

Many parents, however, are convinced they’ve found the answer. And most experts are on the opposing side.

Indeed, few medical battles are more charged than that between parents who believe mercury in their children’s vaccines brought on autism and the medical establishment that has found no evidence to support that claim.

Where the ground really starts to shift is the next association made – that it was this society induced guilt that led poor heroic Karen McCarron into killing her vaccine-injured ‘heavy toll’ inducing daughter.

Some who knew McCarron through her work with an autism support group say the physician blamed herself for allowing her daughter to be vaccinated, and feared that the available remedies wouldn’t make enough of an improvement to her daughter’s quality of life. Others suggest that perhaps working among other doctors skeptical of the vaccine connection created an emotional tug of war for McCarron

I think I know Mike well enough now to be absolutely sure that he and his family would be _outraged_ at these utterly vacuous statements. To besmirch the memory of Katie McCarron by trying to empathise with her murdering mother and to try and absolve her and by implication blame the mainstream medical community is appalling.

In fact, the reverse is almost certainly true – the utter hopelessness that groups such as Autism Speaks like to foment are much more likely to have led to any depression Katie’s murderer might’ve had. And if she felt that vaccines caused her daughters autism then she long ago crossed the line into quackery. In this case, fatal quackery. There is still absolutely zero evidence that vaccines cause autism. Anyone – and I mean _anyone_ who has had a hand in perpetuating that myth bears some responsibility for the murder of Katie McCarron.

On the 22nd of June, Kellie A. Waremburg attempted to kill her four year old daughter. Thankfully she failed. Her daughter has cerebral palsy.

Shortly afterwards, the same barrage of testimonials commenting on how good a mother Waremburg was came out and how difficult it is to parent a child with cerebral palsy:

“She’s always been a good mom. She’s always interacting with her (daughter),” said next-door neighbor Katie Gardiner.

Families face challenges, there’s no question about it. Children have varying degrees of impairment. For some families, there is a minimal impact to families who need to take every aspect of their child’s care – feed them, dress them, toilet them,” said Morgan, who also is the chief of the section of child development within the Department of Pediatrics at University of Illinois College of Medicine at Peoria.

So? So what? Get over it, get on with it. If you can’t, then hand your child over to family members or social services and let someone who doesn’t put themselves first get on with it.

I want to clue these killer parents and those parents and groups who ‘understand’ killer parents into something: Your child is not your property. You have no rights over them. You have an obligation to parent them, love them, feed them, clothe them, teach them and let them be who they are. When you have a child, you put yourself last. If your career suffers – that’s not their fault. If you can’t go out as much as you used to – that’s not their fault. If money is a problem – that’s not their fault. Stop transferring your unhappiness about the way your life has changed into excuses for killing, or understanding the killers of, children.

I’ve had two themes running through this blog of late. One is this one – the murder of disabled children. The other one is what’s going on at the Judge Rotenberg Centre where electric skin shock is used to punish autistic and non-autistic students. People who believe in the concept of neurodiversity have been outraged and blogged both of these events continuously and thoroughly.

There is however, one section of people who has remained utterly and totally silent on both issues. The self styled ‘autism community’ who perpetuate the ongoing myth of vaccines causing autism.

Autism Speaks released a short movie about the horrors of having to live life with an autistic child. I’ve seen no movies about the JRC, or investigations into electric shocks for autistic people.

The NAA who regularly (and falsely) denounce good science and promote bad released a damp squib of an online petition and then fell totally silent on the issue.

Safe Minds? Nothing.

ACHAMP? Nothing.

These, don’t forget, are the people who call themselves the autism community. Seems to me like they care about one issue and one issue only.

And how about the anti-mercury bloggers? The grass-roots ‘autism community’.

Adventures in Autism? Nothing.

UPDATE: Ginger informs me that she’s temporarily not blogging at all and hadn’t even heard of Katie McCarron. In this light, it doesn’t seem fair to place AiA here.

Injecting Sense? Nothing.

Whilst these people continue their obsession with trying to find some kind of spurious link between vaccines and autism the world continues to turn. Whilst they present themselves to politicians and media outlets as the autism community, the world continues to turn. Whilst they attend single issue conferences, the world continues to turn.

Unless you’re Katie McCarron. Then the world doesn’t turn at all.

Unless you’re Lexus Fuller. Her world is shattered as she must grow up knowing her mum tried to kill her.

Unless you’re a student at the JRC where the world and time must appear to stand still as you are electrocuted for non-compliance.

Kevin Leitch: Big Pharma Shill

25 Jun

I’m involved in a protracted discussion with a bunch of anti-vaccinationistas on what claims to be an autism support forum. Amongst them is the hilarious srniath who is treating is child with Lupron but who didn’t know what CPP or PPP was and didn’t know that excess testosterone could be caused by vitamin and supplements.

Another one is someone one calls themselves ‘respect’ and who is an out-and-out anti-vaxxer:

I think we are missing the forest for the trees. Will we all go out and vaccinate our kids with 20 vaccinations before the age of 18 months just because there is no mercury in them? The issue here must the vaccination, and not just the mercury.

Source.

Other regulars there include Erik ‘PR for the Geier’s’ Nanstiel and various other posters – I’ve heard various conspiracy theories totuted around including the eye-popping theory that the World Trade Center terrorist attacks were perpetrated by shadowy US government figures.

Basically, there’s a few good people there but they are drowned out by the louder wingnuts.

Anyway, I’m involved in a discussion regarding the nature of neurodiversity (srinath is again involved so you’re assured of the odd good belly laugh) and it seems that I’ve been outed as a pharma shill! Again!

‘repect’ googled for “kevin leitch pharmaceutical” and damn – got a result!

Department for International Development (DFID)

Kevin Leitch
Programme Officer
Department for International Development (DFID)
HPD, Level 8 West, 1 Palace Street
London SW1 5HE
United Kingdom
Phone: 44.020.7023.1121
Fax: 44.020.7023.0428/0174
Email: k-leitch@dfid.gov.uk

Oh man – who would’ve thought that using my real name would’ve led me to being outed? I would’ve gotten away with it too, if it weren’t for you darn kids!

I admit this really tickled my funny bone – how desperate do you have to be to discredit a broke web developer from the West Midlands?

Anyway, just in case there’s any confusion in the future I’d like to make clear that I am not Kevin Leitch. Nor am I Kevin Leitch, or Kevin Leitch, or Kevin Leitch, or Kevin Leitch, or Kevin Leitch and sadly not Kevin Leitch.

MMR And The Daily Mail – Archetypal Strawmen

23 Jun

In their continuing quest to establish MMR as evil in a syringe, the Daily Mail are turning increasingly to more and more blatant strawman fallacies.

In a recent article entitled *’We won’t allow MMR cover-up say parents of tragic toddlers’* , the Daily Mail reach new lows of journalism.

The parents of two healthy toddlers who died ten days after being given the controversial MMR jabs have warned the Government that they will not allow the cause of their deaths to be ‘covered up’.

Firstly, lets note that nowhere in any article I’ve read has the UK government attempted to ‘cover up’ the deaths of these two toddlers. The Daily Mail are inventing a conspiracy where none appears to exist. This will of course allow them to turn round when MMR is established _not_ to be the cause of death and scream ‘cover up!’ and ‘conspiracy!’ and ‘we told you so!’.

Lets further note that the MMR jab is only controversial to Daily Mail and Private Eye readers. I read a *lot* of non autism related, non vaccine related message boards/forums/newsgroups and whenever the issue comes up virtually nobody really believes the MMR causes autism, or is in any way ‘controversial’.

Doctors say they cannot explain why George Fisher and Anna Duncan, both aged 17 months, died in their sleep. But the children’s parents believe that the controversial triple jab – against measles, mumps and rubella – is to blame.

If this is a cover up then those Doc’s are really bad it it. Note that they’re being entirely honest and claiming that they cannot explain why these two kids died. Hell, they’re not even claiming the MMR _didn’t_ cause their deaths. I also note however, that no actual Doctors – and certainly not the Doctors who said they ‘couldn’t explain’ the deaths – are interviewed or quoted anywhere in this piece.

George’s mother, Sarah, said last week that despite repeated Government assurances the vaccine is safe,she and her husband were ‘100 per cent sure George was killed by MMR’.

Based on what?

The only indications of ill-health before the children died were that both showed signs of apparently minor reactions to their MMR jabs.

Minor reactions. My daughter had a reaction to her DTP – vomiting, fever – we panicked and took her to A&E where her fever settled almost immediately. At the time we were ‘100% sure’ that the DTP jab caused/triggered her autism but we’re not any more. Her reaction was, relatively speaking, fairly innocuous and it sounds liek these two kids reactions were too. Minor reactions don’t lead to death.

And Anna’s father, John, said he and his wife would ‘never forgive themselves’ for not paying privately for single jabs and for believing Government assurances that MMR was safe. _They now believe that the doctors should have spotted and warned of the dangers_. Mr Duncan said that, having conducted extensive research since Anna’s death, he and his wife, who is a nurse, considered it possible that their daughter had died ‘as a result of a catastrophic reaction to the vaccine’. He said: ‘Six days after her jab, Anna developed purple spots on her body and bouts of high temperature. ‘_We read only later that these were side-effects of MMR to watch out for. ‘If we had been properly warned we would have taken her for medical help sooner. But the risks of vaccines are just never mentioned. ‘Anna had been exposed to an outbreak of chickenpox in our village just before her jab, which we mentioned, and had a runny nose, which means she really shouldn’t have been injected with MMR at that point._ ‘Parents should be better informed about the risks and the choice of single jabs should be available to all parents through the NHS.’

So now we get to the meat of the matter. Despite the Mail doing their best to muddy the time line it now seems that this child was ill prior to receiving her MMR, which they didn’t know was something to look out for despite this information being freely available on the NHS Direct website, they then let her have the MMR which she had a minor reaction to nearly a week after the injection (which is also noted and discussed at NHSDirect) and she then tragically died. Her parents then decided that this previously categorised ‘minor reaction’ was in actual fact a ‘catastrophic reaction’ and that it was the Governments fault for engendering a conspiracy of silence over the MMR.

The idea of a government conspiracy to keep the potential dangers of the MMR vaccine quiet is fallacious in the extreme given that the information exists on the leading healthcare website in the UK. Its not even hard to find – simply go to the home page and type ‘MMR’ into the search engine.

Its also fallacious, given the time line established to claim that the MMR is at fault here. Medical wisdom is clear that vaccines should not be given to kids who have been ill. If her parents didn’t tell the person administering the vaccine this fact then they bear part of the responsibility. If they _did_ tell the administering nurse she’d been ill then the Practice concerned should be held accountable and punished.

The MMR is not at fault here. The issue is that an illness that could trigger a bad reaction was not identified prior to administering the MMR.

This is not the first time (and I’m sure it won’t be the last) that the Daily Mail attempt to seriously mislead people over the MMR vaccine. They have lost all sense of responsibility over the issue, mainly because they have invested so much time and ink into the matter. With breathtaking arrogance and irresponsibility, the end of this article, states that:

The failure of the Government’s campaign was demonstrated last week when figures showed that because so many parents are spurning MMR, Britain is now in the grip of the biggest measles outbreak since the vaccine’s introduction in 1988.

Has the government campaign failed? Probably. They did a poor job at getting the truth out but lets not pretend that rags like the Mail didn’t play a significant part in causing this measles outbreak. They share the responsibility. Its time for them to grow up and stop jumping at shadows.

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.

Mark Geier and David Geier: Carry On Misrepresenting

20 Jun

Less than a fortnight ago, Kathleen provided evidence that Geier and Geier were guilty of fallaciously misrepresenting themselves by claiming a false affiliation with George Washington University. She promised at the time that this was far from the end of the matter and now she reveals the second (but far from the last) of her evidence against the integrity and honesty of the Geier’s.

Both the abstract and text of Dr. Mark Geier and David Geier’s article in Hormone Research, A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders, indicated that, The Institutional Review Board of the Institute for Chronic Illnesses (Office for Human Research Protections, US Department of Health and Human Services IRB number: IRB00005375) approved the present study.

After a search for the IRB of the Institute for Chronic Illnesses, Kathleen found that the following people were memebrs of the IRB panel:

Mark Geier, David Geier, Lisa Sykes, Kelly Kerns, John Young, Anne Geier, Clifford Shoemaker

The two Geier’s are obvious. Anne Geier is Mark Geier’s wife. Lisa Sykes is parent to a child on the Lupron protocol. Dr Young is Mark Geier’s business partner, Kelly Kerns is a petitioner in the vaccine/autism lawsuit and Clifford Shoemaker is a vaccine injury lawyer. How very convenient. Go to Kathleen’s site to read the rest of this debacle.

UPDATE (24-06-06): Kathleen made another discovery about one of the above – John Young: It has just been called to my attention that John L. Young is not only an OB-GYN; his name appears on the Autism Research Institute’s list of DAN! practitioners. According to his ARI listing, Young completed an eight hour Intensive Training by the DAN! Physician Training Team at the 2006 DAN! conference in Washington, DC. He offers vitamin/mineral supplementation, essential fatty acids, gluten and casein-free diet, antifungal pharmaceuticals and nutriceuticals, heavy metal detoxification (i.e., chelation), antiviral medications, and last but not least, Lupron injections to autistic children.

Rashid Buttar And the Autism Industry

17 Jun

Its a few days short of a year since I wrote my original piece on Rashid Buttar – a piece that drew equal amounts of amusement and hostility depending on one’s viewpoint. I received many comments regarding how nasty I was to a poor, dedicated doctor and so I thought it fit to take another look at Dr Buttar and re-examine some of my comments and look at some things I didn’t previously look closely at.

TDDMPS Revisited

In my previous posts I was skeptical of the efficacy of Buttar’s TD-DMPS product, however I noted that Buttar had stated that:

In a study due to be released by the winter of 2004, conclusive data was accumulated regarding the efficacy of a specifically formulated transdermally applied combination of DMPS conjugated with a number of peptides, called TD-DMPS

And yet, a search of PubMed still – 18 months after the stated release date – reveals _no_ such study. If anyone has a copy of this elusive study I would love to see it.

Interestingly, as I (and Orac) also reported, Dr Buttar seems to be moving away from TD-DMPS, once lauded as the holy grail of autism treatments, in favour of an IV EDTA protocol. The reader can make up his or her own mind about why that might be.

Rashid Buttar: Man Of Letters

Rashid Buttar has an impressive amount of letters after his name and an equally impressive amount of fellowships and board certifications on his CV.

Fellow – American Academy of Preventative Medicine
Fellow – American College for Advancement in Medicine
Diplomat – American Academy of Preventative Medicine
Diplomat – American Board of Chelation Therapy
Board Eligib – Board Certification in Emergency Medicine
Diplomat – American Board of Clinical Metal Toxicology
Diplomat – American Association of Integrative Medicine
Diplomay Candidate – Board Certification in Emergency Medicine
Diplomat Candidate – American Board of Anti-Aging Medicine
Member – National Metals Task Force
Member – American Association of Physician Specialists
Member – International College of Integrative Medicine
Member – International Hyperbaric Medical Association
Member – International Hyperbaric Medical Association Foundation

Wow! Thats pretty impressive. Until we actually look a little closer.

In the US, its the American Board of Medical Specialities who oversee which boards are legitimate and which are not. They have a full list of accepted board certifications online. Of the ten individual associations listed as being ‘American’ or ‘national’ above, *only one – the American Board of Emergency Medicine – is recognised* and this is one that Buttar lists himself as simply being eligible for, not a member, diplomat or fellow of.

So the ‘veneer of respectability’ Rashid Buttar has constructed for himself reveals itself as not in anyway officially recognised. Is such official recognition important? I guess that would depend on who you asked. If you asked autism/thiomersal believers then its not important at all. they would say that such omissions reflect the ongoing conspiracy to ensure only mainstream medicine keeps itself in business by excluding pioneering mavericks like Rashid Buttar. If you asked everyone else they’d probably say it was important because recognised board certification reflects the fact that a member, diplomat or fellow has a certain, scientifically valid level of expertise within a given subject. Or that a given subject is recognised to have a beneficial effect. There is a lengthy document explaining what a medical specialty has to do to gain ABMS approval.

Boards not recognised by ABMS are self appointed and thus free to offer membership based on whatever criteria they see fit.

I did note that there were a few certifications Dr Buttar has missed out on – however he can easily rectify that situation with certification that is as equally – if not more – credible as his current certification.

Rashid Buttar: Man of Science

One of the most intriguing statements on Rashid Buttar’s CV is this:

Visiting Scientist, North Carolina State University

So I popped along to NCSU to have a look and sure enough, Rashid Buttar is listed in his role as ‘visiting scientist. However, what his CV fails to mention is that his chosen specialty is ‘Food Science’, a science that up until now I’d never heard of. Luckily, NCSU have a handy page that defines it for me:

Food Science is what happens to food from the time it’s harvested (or from it’s beginning in a lab) until you swallow it

I think we can all see just how vital this sort of science would be in autism research. Why do I get the feeling that at some point we’ll be seeing the emergence of Buttar Bread? Tasty and Gluten Free!!

Rashid Buttar: Crusading Maverick

In an amusing piece of one-sided propaganda, Rashid Buttar is portrayed as a poor, hard done by hero:

Buttar and eight other integrative doctors from across the state decided they’d had enough. They formed the North Carolina Integrative Medical Society and hired their own lobbyist to work on changing state law. At an April press conference attended by a mere three members of the media, plus lawyers for the medical board and members of the medical society, Buttar’s hand shook as he blistered the medical board for the way it treated integrative doctors.

Two weeks after Buttar’s blistering testimony at the legislature, a letter arrived in the mail from the medical board inviting him and his attorney to appear before the board to answer questions about his practice of medicine and advising him that his rights would be read to him when he appeared. When Buttar declined the invitation, the board subpoenaed him to appear before them.

After two years of harassment and $20,000 in legal fees, Buttar emerged from the hearing poorer but with his clean record intact.

Poor Rashid couldn’t quite seem to grasp why he and his fellow ‘integrative practitioners’ should have to answer to medical authorities like everyone else. And how about that $20,000 legal fee? Ouch.

Rashid Buttar: Fairly Recompensed?

So there’s our hero, 20 grand out of pocket. What does a crusading maverick with an interest in picking food and invented board certifications do? Why he starts getting some money of course! He either set up or joined V-SAB medical labs, which is again listed on his ‘autism buster’ CV….except that just like his ‘visiting scientist’ status, this position doesn’t seem to have much to do with autism. Chemidex lists V-SAB under _’Personal Care & Cosmetics’_ . Go figure.

He has also established ‘Advanced Medical Education & Services Physician Association’ (AMESPA), which is essentially a training facility to allow other practitioners to learn at the feet of Rashid Buttar all the secrets he knows to cure autism, cancer and reverse old age. For this service he charges $20,000 for a five day course. Coincidentally the same amount as two years worth of legal fees when being investigated by North Carolina health authorities. Dr Buttar has no less than 15 testimonials on his site from satisfied practitioners. Thats a cool $300,000 – but not to worry, I’m sure those practitioners will easily recoup their investment from their patients – the autism industry is a growing one after all!

But Buttar hasn’t forgotten his patients. Oh no.

Rashid Buttar: Caring and Sharing

While Dr. Buttar….is also one of those practitioners who receives a lot of complaints. In my opinion, Dr. Buttar’s latest chelation protocol is too invasive and risky. His rates are obscene, too.

(Autism-Mercury Yahoo Group)

Obscene rates? Surely not! Lets take a further look.

Dr. Buttar is asking for $800 for consultation fee (1 hr max) on his Dallas conference on June 16th-17th. I fell off my chair when I heard it.

(‘dingwendy’ CK2 yahoo Group)

We started with Dr. Buttar and $20,000 out-of-pocket expenses later (yes,in a little over a year!)…

(‘plumbrok’ CK2 Yahoo Group)

Wait, $20,000 _in a year??_ Thats…what….the same amount as _two_ years worth of legal fees when being investigated by North Carolina – guess Buttar was easily able to get that money back.

‘plumbrok’ continued:

..he had an unusually strict set-up, as Tracy put it, “My way or the highway” – every supplement had to be purchased through his office and at the time we saw him, he would not accept any substitutes.

Well of course! Only his products = only his profits. This is not a stupid man. However, for that $800 per hour I bet these people get _great_ service!

I do want you to become aware Dr. Buttar treats Cancer and Heart Disease patients. It is his Nurse Practioner that handles all the Autism children and Dr. Buttar reviews the files each week. Very rarely do patients get to see Dr. Buttar. I understand he is trying to see new patients the first time they are in the office, but there is no guarantee as he travels around the country lecturing on various topics and may not be around.

(‘punkinsmama1999’ CK2 Yahoo Group)

Yes, Dr Buttar does not see a lot of his autism patients more than once but oversees the protocol.

(‘Susan Fund’ CK2 Yahoo Group)

So it seems that your $800 per hour gets you an hour with Buttar’s nurse and that you probably won’t get to see Buttat himself above once. It also transpires that to be on his protocol you must buy _all_ supplements from him and him alone. Is his reputation suffering?

Is he really reversing Alzheimer’s? I find that Dr. Buttar talks a lot but produces little evidence.

(‘noaholiviaian’ CK2 Yahoo Group)

The crown seems to be slipping.

Im sorry, but I cant help but to think that with such an outrageous hourly rate, it is praying on parents who are desperately seeking the comforting assurance of a medical practitioner….I know that most parents would willing cut off their own right hand if it would help their kids… and Dr. Buttar knows that as well.

(‘rheaton_stormcast’ CK2 Yahoo Group)

As touched on above, Dr Buttar also treats cancer. I made mention of this in my first blog post about Buttar and discusses his biggest fan – Cajun Cowboy – who had this to say about Dr Buttar:

He (Dr Buttar) told me that most of his patients were much worse off than I and that God had Blessed me by giving me a wake up call and that he could enable my body to heal itself! Now that is the first time I have ever heard a Doctor say he could enable my body to heal cancer.

So I thought I’d drop in on Cajun Cowboy’s site to see how things were going. I was a little surprised by what I found:

All the information about Dr. Buttar is still on this site but I no longer am one of his patients and I do not recommend him to any one for any reason. If you go to him for treatment BEWARE, BEWARE and read Roger Mason’s books first and go to QuackWatch.org first!

Seems like Cajun Cowboy has had something of a change of heart.

Now as far as Dr. Buttar goes read what is said about almost every modality that he practices at QuackWatch.org. Now I new (sic) what was on this site and I new (sic) you have to take it with a grain of salt but for me, most of their opinions concerning Dr. Buttar’s treatment may be true! What I can say for sure is that they did not work for me after over $150,000.00 dollars and two years of treatment!

$150,000 worth of ‘treatment’ that appears to have done nothing at all. Cajun Cowboy sounds quite bitter about the whole thing. Why for $150,000, Buttar could afford to be pursued over 7 times over 14 years by the North Carolina medical authorities and _still_ make a $10,000 profit.

Rashid Buttar: Living The American Dream

Business and free enterprise are the American ideals. On a much smaller scale we could easily equate the level of success Rashid Buttar has had with say a company like…oh I don’t know…Enron. They were successful for quiet some time.

Rashid Buttar is making a very very good living out of his autism cottage industry and so far he’s managed to do it on the back of some fake respectability generated from meaningless board certifications, without publishing any studies (despite repeated promises to do so) into the efficacy of his treatments and by charging people who consider themselves as desperate a lot of money for receiving an ‘interesting’ level of personal service. Along the way he’s keeping his friends sweet by teaching them his methods and is also getting a good slice of money from them too.

Wonder what things will be like a year from now?

A Dateline Participant Speaks

14 Jun

_This comes from Autism Street. The whole post is here. I’m going to reproduce the post then shut off comments here. Please comment at Autism Street._

My wife recently told me about an acquaintance of ours (through a local online parent group) who had just withdrawn from the Arizona chelation study at the Southwest College of Naturopathic Medicine. It had been I long time since I had exchanged any sort of messages with her or the group, so I sent her an e-mail to ask her about it.

Boy was I in for a wonderful surprise – a return message full of love and acceptance for a wonderful child! This was interesting to me, because I was curious how the influence of media like NBC’s Dateline or Autism Speaks may or may not have played a part in her decision, especially since her daughter had actually appeared in the Dateline segment. I did not specifically mention Dateline or Autism Speaks in my original e-mail to her, but did ask if media was an influence.

We exchanged several more e-mails and discussed her guest blogging about this. Without any further ado, I’d like to welcome a guest blogger to Autism Street who will go by the name Belle. She’ll refer to her daughter as Mulan. I’ll ask Belle two questions, and she’ll provide her answers. Whether or not she fields any comments will be entirely up to her.

*Belle, what influenced your decision to participate?*

_”I had read a lot on chelation, and I was at one point in my life, ready to do “whatever” it took! It’s easy for parents to get hooked on all the hype and “doom and gloom” out there. If at one point I had read that I could get a child as cool and great as Mulan, then maybe I wouldn’t have been so quick to do “whatever” it took.”_

*How did you arrive at the decision to withdraw Mulan from the study?*

_”Thanks to time, discussion with friends, and Mulan herself, I decided to withdraw. I signed up for this about a year ago, got approved for it, and started the process. Since signing up, I had a lot of time to listen to others and to think more about what I was doing.”_

_”Then there’s Mulan. Mulan is doing soo well! I couldn’t ask for a child to be doing as well as her. If I had been told that she’d be doing as well as she is, I wouldn’t have believed what anyone was telling me. I know another local research nurse who has a son who is also doing really well. Sometimes it seems she’s the only one I know who doesn’t talk “doom and gloom”. I am taking her attitude. I do believe that with a lot of hard work on the parents’ part, discipline, and reality, your child can do a lot!”_

_”When I read about someone’s child who is doing such and such, and they attribute it to pills or chelation, I think, oh yeah, Mulan is doing that. And it’s not because of a pill or chelation, it’s because of good old-fashioned hard work! There’s a short movie that someone at [name removed] suggested I watch. It’s about how chelation has supposedly helped their children. It’s horrible! I thought that Mulan could easily be on that as well – I have pictures of her freaking of getting her picture taken, and then I could use her kindergarten picture, before hours of therapy and hard work, etc.”_

_”After seeing the piece on Dateline, and that clip from autism speaks, I am sick and tired of the “doom and gloom” attitude. Dateline showed Mulan for approx. 4 seconds. Both times, it appeared they tried to make her look like a freak. The first time she was up close to the camera and making a face. Those of us who know her, know that she’s vain and loves the camera. My dad always has the video camera and will turn it around so Mulan can see herself. Mulan was just doing her thing in front of the camera. I could see any and all of my kids doing what Mulan was doing, especially if it’s edited carefully. I’m sure I could find all three of my kids looking like freaks – they’re kids! Then they showed her getting her ears checked and she’s hand flapping. Yes, because of autism Mulan is a hand flapper when she’s excited. They couldn’t show the whole story let alone the fact that she’s a child with autism that has never seen this Dr. before, and was excited to have a check up.”_

_”They could have shown Mulan socializing with her siblings or communicating with the doctor, but they didn’t do that. Apparently Dateline would think it okay to have people believe that people with autism don’t socialize or communicate! Now I am going off on a totally different tangent, but I was sort of hoping that after seeing the show I would have changed my mind and decided to “go for it” with Mulan. Instead, it just made me more adamant that I wasn’t going to do this to Mulan. Before the show I just had a lot of fear.”_

_”Mulan has always been healthy. I’ve had her at the Dr. more than once convinced she had strep, and she didn’t. Actually, her siblings get strep, and she doesn’t. It’s weird in a way, but I’m not complaining! Mulan also hasn’t had any surgeries since she’s been diagnosed. She’s had nothing medical done to her, so I have fear of doing anything medically unnecessary to her. Not that I wouldn’t do anything for her medically, I would in a heart beat if she needed it. She doesn’t need DMSA, so I am choosing not to give it to her.”_

_”I want to clarify that I don’t blame the medical community for Mulan’s autism – she was born with it, I know that. I have seen my child take such great steps forward, that I fear giving her anything that might hurt her. I still give her McD’s, and candy with all the food coloring in the world. She will get an Icee at Target on occasion, just like her siblings. I guess some might say those things might hurt her, but that’s called living, and Mulan is living and functioning in her own cool way.”_

_”I just had Mulan’s first habilitation worker quit. This woman is the coolest woman ever. I thanked her for helping Mulan become the weird free spirit that she is. I love my weird free spirit, and I hope others can see how her free spiritedness is actually pretty cool, and not necessarily as weird as they first might think!”_

Dan Olmsted and Andrew Wakefield. Rumour Mongering Ahoy!

14 Jun

UPI journalist Dan Olmsted has released another in his series of autism related pieces. This one is entitled: *The Age of Autism: But is Wakefield Right?*

The piece then goes on to discuss Olmsted’s belief that he may well be. Lets take a critical look at Olmsted and also Wakefield’s beliefs and contrast them with what we know and strongly suspect about Wakefield and the whole MMR debacle. Olmsted begins with:

Let’s put aside the issues surrounding the Lancet paper and concerns about a measles epidemic and go straight to the heart of the matter: Does the MMR cause autism? In other words, is Wakefield right? After looking into the topic for more than a year, I’m very concerned that he may be — that, especially in children whose immune systems have been rendered susceptible by any number of possible exposures, the combined live-virus vaccine has its fingerprints all over numerous cases of regressive autism.

I can well understand Olmsted wishing to slide the inconvenient retraction by the Lancet aside. Unfortunately they cannot be so readily shunted away. This (does MMR cause autism) is at heart, a scientific question. Only well designed, thorough, replicable science can support or refute it. The Lancet paper was _not_ good science. The study group was tiny. It seems that not only were the group of subjects sourced via anti-vaccine lawyers but I have heard rumours that there were not twelve subjects in Wakefield’s original group but actually sixteen and that the ‘extra’ subjects were ignored when their outcomes didn’t support Wakefield’s hypothesis. I hasten to add that that is total rumour but if its true, it raises more questions about this study.

I can also well understand Olmsted’s wish to put aside concerns about a measles epidemic. After all, already this year one life has been claimed by measles and hospitalisation rates are exactly in line with those predicted by experts in 2004. These cannot be comfortable truths for a journalist as one-sided as Mr Olmsted to face.

However, Mr Olmsted wishes us to ignore these things – pretend they don’t matter – so lets humour him and discuss only his narrow view.

Mr Olmsted states that he’s been looking into the matter for over a year. I’ve been looking into the matter nearly three times as long as that. Does that mean I ‘trump’ Olmsted? He says that childrens immune systems have been compromised and that the MMR live virus has ‘its fingerprints’ all over numerous cases of regressive autism. However, as is usual in these reports, Olmsted fails to back up these unsubstantiated claims. Indeed, these are part of the same belief system that has led to the point where Wakefield is being investigated by the GMC.

Does MMR cause autism – its a matter of science, not propaganda. If Olmsted wishes to convince people capable of rational thought then he needs to provide the science.

Has any science so far managed to substantiate Wakefield’s claims? Here’s Ben Goldacre:

But let’s not forget, the Daily Mail was promoting Krigsman’s research back in 2002 as well: at that time, he was putting endoscopes into the bowels of young children with autism, and said he had found evidence of inflammation. 4 years later, looking on PubMed, the standard database for all medical papers, it seems this research still has not been published in a peer reviewed academic journal. Forgive my bluntness, but it seems a shame to go poking around up there if you’re not going to write up your findings properly. Meanwhile the Telegraph says that Krigsman’s most recent unpublished claim is replicating similar work from 1998 by Dr Andrew Wakefield, and 2002 by Professor John O’Leary. But there is no such work from 1998 by Wakefield, at least not in PubMed (in that year he publishes his infamous, very different, and partially retracted Lancet paper on MMR, of course). Meanwhile it is well documented that other labs have tried to reproduce the 2002 O’Leary study and come out with different results, and that the protocol was likely to have problems with false positives because of the tests used: two perfect examples of the importance of research being fully written up and published, so it can be replicated and assessed. Oh, and the newspapers didn’t mention that Andrew Wakefield was also an author on the 2002 study along with O’Leary, nor that Wakefield is also very closely associated with Krigsman (they are doctors together at Thoughtful House, a private autism clinic in the USA).

Bad Science.

So despite the claims of scientific verification from Krigsman’s work lets be clear: this work has not so far met the most basic standard of scientific credibility. Olmsted fails to mention this. It bears repeating: *Does MMR cause autism* is a scientific question. It can only be answered with good science. Krigsman’s work is not good science.

After talking about all the families he’s talked to, Olmsted adds:

You get the picture. “Anecdotal evidence.” But you have to wonder how many of these stories — one is tempted to say, bodies — must pile up before the medical authorities go back and take a fresh look at the issue. This blithe disregard for case histories — for what parents, the supposed bedrock of our “family-friendly” society, say — is one of the most appalling features of the current climate surrounding autism research.

Firstly, I have to say I am _not_ tempted to use the word ‘bodies’ in connection with autistic kids. Given recent events Mr Olmsted would do extremely well to choose his words with a little more care.

Lets also note that the ‘medical authorities’ _have_ taken repeated looks at this issue. The truth is that they can look until the cows come home. If there’s nothing there to find, nothing will be found. Ben Goldacre again:

in the May issue of the Journal of Medical Virology, there was a very similar study, only this one has actually been published. It looked for measles RNA in children with regressive autism after MMR vaccination, much like the Krigsman story. It used tools so powerful they could detect measles RNA down to single figure copy numbers. But they found no evidence of the magic vaccine-strain measles RNA to implicate MMR, and perhaps because of that unfrightening result, the study was loudly ignored by the press.

Readers may recall that as recently as last month, the usual tabloid suspects were screaming about MMR again, this time due to another unpublished poster presentation from Krigsman. Strangely, they failed to mention another IMFAR presentation which failed to replicate Wakefield’s work. No scope for shrieking headlines I guess and no scope for propaganda from Olmsted.

Olmsted also refers to Dr Peter Fletcher:

The official, Dr. Peter Fletcher, became an expert witness for parents’ lawyers, which of course creates a competing interest that needs to be factored in. But Fletcher said his new role gave him access to documents that deeply concerned him.

However, as readers may recall in an earlier piece I wrote at the time, Fletcher brings _nothing_ to the table except vague insinuation and conspiracy mongering. No new science is mentioned or discussed whatsoever.

Lets go through it once again: *Does MMR cause autism?* – this is a question of science. It can only be answered using the scientific method. So far, this science question has been answered in the negative. At some point Olmsted, if he wishes to continue thinking of himself as a journalist, will need to start looking a little more deeply at the issues he writes about. At the moment, he’s not a journalist. He’s a propagandist.

Katie McCarron

12 Jun

Since the horrifying news that three year old Katherine ‘Katie’ McCarron was killed by her mother, a few of us have been in contact with Katie’s Granddad – Mike McCarron.

Mike contacted me after viewing the WMV file of [my daughter] I uploaded to counter the idea that autism was a tragedy and that a killing like this was in any way understandable and we’ve swapped emails since then. I have to come to have an inordinate amount of respect for Mike not just for his utterly transparent love for his grand-daughter but also his lucid refusal to countenance the idea that her death can be in any way rationalised or painted as understandable, despite the mealy mouthed efforts of a few journalists and a couple of bloggers who should know better.

Mike sent me the picture of Katie a week or so ago but asked me not to blog it which was totally understandable. However, as the ‘this is justifiable’ nonsense has increased, Mike feels that its time to show people the beautiful child that we’re supposed to believe it was ‘understandable’ to kill.

Here’s a comment from Mike over on Kristina’s AutismVox blog:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I’m not ashamed to state that I have cried numerous times since corresponding with Mike. In horror that something so appalling could happen to someone so young and innocent, in recognition of the most abrasive pain I could imagine when talking to Mike and in awe that he remains so lucid and how directed and purposeful his very real anger is:

But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

Everyone should have such a Grandpa.

UPDATE: Stephen at Not Dead Yet also received some photo’s of Katie, as did Kristina.

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