Archive | Advocacy RSS feed for this section

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.

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!”_

Geier and Geier ‘Significantly Misrepresent’ Themselves

10 Jun

Kathleen has written part one of a multi-part look at some of the recent actions of those purveyors of Lupron, the Geier’s.

Seems that a new study of theirs; ‘A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders’ was accepted for publication in Hormone Research and published online prior to being published traditionally.

The interesting bit is the claim of institutional affiliation to Department of Biochemistry, George Washington University, Washington, D.C., USA.

Intruiged, Kathleen contacted Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology to ascertain exactly what the Geier’s affiliation to GWU was. His reply was a bombshell and a further mark against the Geier’s honesty and reliability:

He described the affiliation with the Department of Biochemistry in the Hormone Research article as “fallacious,” and stated that it conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.

I urge you to go and read the rest of Kathleen’s investigation into the Geier’s. Its a compulsive read.

As I understand it, this is _far_ from the end of the matter. There will be further parts to this ongoing issue. Keep an eye on the Neurodiversity weblog.

iRunman Autistic Celebration Run

30 May

Autistic Youth Runs PEI Tip-to-Tip for Autism Acceptance and Education

(Oyster Bed Bridge, PEI, May 28, 2006) On July 2nd, 2006, 18 year old Alex Bain will leave North Cape in a bid to be the first autistic to run Prince Edward Island tip to tip. Along the way, he hopes to raise $20/km for his almost 300 kilometre trek that will end in East Point on July 15th. The funds will be used to bring internationally recognized expert Dennis Debbaudt to PEI on September 27, 2006, for a series of 3 seminars about what happens and what should happen in encounters between autistics, emergency first-responders and law-enforcement officers.

Almost every weekend, for most of the year, Alex puts on this trademark yellow t-shirt, heads to a charitable road race on the Island. He runs not only for the charity benefiting from each race, but also for autism. Not to raise money to find a “cure” or to “prevent” people like himself from ever being born, the focus of most autism runs, but to raise awareness and acceptance. His recognition as the PEI RoadRunners 2004 Patterson Palmer Rookie of the Year and 2005 Ewen Stewart Inspirational Runner of the Year reflects both his running and advocacy abilities.

Accompanying Alex on her bike, and organizing Mr Debbaudt’s PEI seminar, is Alex’s mother, janet norman-bain, known as “jypsy” to many in the autistic community both locally and internationally through a website she ran from 1995-2005, “Ooops…Wrong Planet! Syndrome” at PlanetAutism.com. jypsy and another of her four children are diagnosed with Aspergers Syndrome, an autistic spectrum diagnosis. jypsy watched Alex start grade 1 unable to speak and graduate from Bluefield High School twelve years later with honours and prizes for top marks in two of his classes. This July she’ll be there to see him fulfill his dream to be the first autistic to run PEI tip to tip and help fundraise to make PEI a safer, more inclusive community for all autistic people.

Studies show that autistic people are no more likely to break the law than non-autistic people, but are 7 times more likely to come into contact with law enforcement officers. Dennis Debbaudt, a professional investigator, journalist and a member of the American Society for Law Enforcement Training (ASLET), is the father of a 21-year-old autistic son. He has educated law enforcement, criminal justice, and education professionals, as well as first-responders, autistics, and parents throughout Canada, the US, and the UK but has yet to present in the Maritimes.

The response of autistic people to encounters with emergency first responders may not always be socially expected or behaviourally typical. Mr. Debbaudt will explain how autistic reactions in some situations, such as running away, unsteadiness, apparently unpredictable or impulsive behaviour, or failure to respond in the expected way, may be misunderstood by first response professionals, resulting in serious consequences. Mr. Debbaudt’s law enforcement and first responder seminars offer tips and options for communications and responses designed to successfully resolve a call involving a person on the autistic spectrum, while his seminar for autistics, parents, caregivers, school personnel and other people, will address the many ways that parents can keep their child secure and safe both in the home and in the community and how autistics can increase their own safety and security. Everyone will come away with a good, practical understanding of the best approaches to make interactions with autistics more informed, safer and less stressful for all involved.

Autism is a neurological difference classified as a developmental disability. Autistic people have atypical behaviours in three areas: social interaction, communication, and restricted interests or repetitive behaviours. Autistics are different at the most basic level available: how they experience the world, and how they learn from it. Autism presents with measurable differences in perception, attention, memory, intelligence, etc. The autistic order and progress of development is different from the typical version as is autistic brain structure, allocation, and function. Autism presents strengths not available to the typical population, but the different pattern of strengths and weaknesses characterizing autism results in many difficulties as atypical needs and adaptive but atypical autistic behaviours are at odds with what is considered or expected as “normal”.

The PEI Council of the Disabled is assisting PlanetAutism.com in this fundraiser and will be handling the donations. Charitable donations can be made to the “PEI Council of the Disabled” (Runman Fund) by mail or at any Credit Union across PEI. Online donations can be made on the Run’s website, PlanetAutism.com/runman where much more information about the Run can be found including the daily schedule and a blog where you can follow the Run day by day.

The Judge Rotenberg Center

26 May

As we tootle about our lives we are sometimes unaware of the full horror of the human experience and how barbarity often exists justs out of sight. For people who are adjudged as needing to receive ‘treatments’, barbarity is in plain sight all the time.

The Judge Rotenberg Centre (note the happy colours) describes itself as:

The Judge Rotenberg Educational Center (JRC) is a special needs school in Canton, Massachusetts serving both higher-functioning students with conduct, behavior, emotional, and/or psychiatric problems and lower-functioning students with autistic-like behaviors

Wait for the animated gif to revolve a few times. Note the happy faces of the students. Note the lovely grounds.

The JRC achieves its results by administering an electric shock to its students when they are in need of corrective action. Students carry around backpacks to ensure they are close to the source of the corrective action. The device/process is called ‘GED’ – Graduated Electronic Decelerator.

Massachusetts Division of Public Licensure is investigating reports of burns to the skin of at least one student. A former worker claimed that JRC staff failed to move the electrodes each day as required to keep from burning the boy’s skin. Director Matthew Israel states that:

Our skin shock device does not cause burns when it is applied. Very, very occasionally, a device might cause a superficial mark on the skin, from which the skin recovers quickly.

Source

A ‘superficial mark’. Right. I guess ‘superficial’ might be in the eye of the beholder Mr Israel. Or, in this case, the skin of a young man.

The JRC also has an interesting take on diet – from its ‘foods to avoid’ section:

1. Avoid all red meat, including beef, pork, and lamb. All are rich in fat, cholesterol, and other harmful constituents.
2. Avoid all poultry and fish. Poultry has about the same amount of cholesterol as red meat, while fish varies, depending on type. Some fish are higher in cholesterol than red meat, others lower.
3. Avoid all dairy products, including milk, yogurt and cheese. Low-fat dairy products are not recommended because of potential health hazards including allergies, childhood diabetes, arthritis and lactose intolerance.
4. Avoid all oil, including olive, safflower, peanut and corn oil. Oil is simply a liquid form of fat.
5. Avoid eggs. Eggs are abundant in fat and cholesterol.
6. Avoid nuts, seeds, avocados, olives and soybean products (including tofu, soy cheese, and soy milk). Soybean products are high in fat, unless they have been specially processed (low-fat varieties are also not recommended).
7. Avoid all dried fruit and fruit juices. (Eat the whole fruit instead).
8. Avoid all flour products, such as breads, bagels and pretzels. The less a food is processed the better it is for weight loss. Flour products are composed of fragments of grain, or relatively small particles, which increase absorption and slow weight loss.

And then from an ex-employee:

A 12-year-old autistic girl wasted away to a “bag of bones” under a harsh dietary regime imposed by the controversial Judge Rotenberg Center for troubled kids, a former employee charges.

Source.

The JRC has also made the news recently by lying about its staff.

The Boston Herald reported Wednesday that the Massachusetts Division of Public Licensure is investigating at least 10 JRC therapists for allegedly practicing psychology without a license. The allegations were initially made by New York lawyer Kenneth Mollins, who complained last week that 14 of the 17 clinicians listed on the residential school’s website are not licensed psychologists. After Mollins’ allegations became public, JRC removed the title of psychologist from the names of all of its therapists that do not have licenses. “We have acknowledged we were giving the incorrect title,” JRC attorney Michael Flammia told the Herald. A district court magistrate will decide next week whether criminal charges will be filed against the 10 therapists and possibly four others that are also under investigation.

Source.

These are just the things that have been discovered.

My fellow Brit, Mike Stanton blogged about the JRC back in April. Amongst the commenters was someone calling themselves ‘Jackie’. Jackie had the following to say:

The director of JRC encourages staff members to use electroshock to quitting smoking, makes staff members watch slaughter house movies as a condition of their advancement, and is starving some of the patients who can not thrive on his radical vegetarian diet.

and

The worst shock punishment is when staff straps a child to a board and tell her that she will be shocked randomly five times in the next hour. Here the ultimate punishment is not the shock but the hour long terror.

and

However, the worst punishment is when food is withheld from a child for bad behavior. Every child’s behavior deteriorates when food is withheld so JRC becomes directly responsible for the behavior for which the child is being punished.

Director Matthew Israel seems to be a fairly typical quack. When challenged to present evidence for his aversive-based regime he says:

Our mission is to function as a school, or service agency, and not as a research agency. Indeed, the funds we receive for our services are not supposed to be spent on research.

Which is a fairly standard altie method of avoiding the necessity for validating quackery. Israel goes on to cite the NIH ‘Treatment of Destructive Behaviors in Persons With Developmental Disabilities’ statement from 1987 as supporting his practices. However upon visiting the page in question one finds a large disclaimer in bold, red, emphasised, uppercase type:

THIS DOCUMENT IS NO LONGER VIEWED BY NIH AS GUIDANCE FOR CURRENT MEDICAL PRACTICE.

I can find next to nothing in Pubmed regarding aversive based treatments.

However, one of the most disturbing aspects of the JRC is the readiness with which it is embraced by its students parents. the JRC maintains a blog in which it posts messages of support from students parents. None of the students views are represented. A typical example is below:

_”Before placing my daughter Julissa at JRC, I suffered tremendously because of her behaviors. She did not obey my rules, she did not listed to me, and she used to go out without permission. When she returned home and I tried to talk to her, she used to get very angry and hit me. When she did something wrong and I tried to give her advice, it was for nothing because she did not listed. One time, she even took money from me without me knowing. She took my ATM card, and since she knew my pin number, she took out $700.00 dollars that I was saving for that month’s rent. At home, we hardly ever slept. My other daughter, my granddaughter, and I were very nervous because of Jusissa’s behaviors.”_

_”Julissa was admitted to the Metropolitan Hospital in two occasions. Also, she was admitted once at Holewood Hospital in Queens. Every time she left the hospitals and returned home, she exhibited the same behaviors.”_

_”Even though my daughter was admitted into two different hospitals and was placed into different treatments, and many prescribed medications, nothing really helped her. I give my testimony of faith that nothing has been better than the treatment or better said the discipline that JRC school has.”_

This sounds (to me) like a naughty girl. But a girl deserving of the sort of regime described above? Electro therapy because a child wouldn’t follow her mother’s rules? On what grounds are these good criteria for this regime?

When I first heard about this, I thought it was a joke. Unfortunately its not.

Autism Hub News

7 May

You may remember that earlier this year, I launched Autism Hub in an effort to centralise the blogging efforts of people who blogged along themes associated with autism – what they all have in common is no interest in curing autism. Some bloggers are parents, some are autistic people, some are scientists – some are all three!

However, I was totally unprepared for how successful the Hub would become in such a short space of time. There are now over 30 members whereas the Hub began with less than 20. I have at least 4 applications sitting in my inbox right now waiting for me to deal with them. The Hub sends each of its members a simply mind-boggling amount of traffic. I don’t know if any of the other Hub members are as obsessive about stat tracking as I am (and seeing as not a few are with Blogger, that would prove to be tricky) but every _week_ sees an increase – and from an increasingly diverse audience. Personally, I’ve had referrals from a .uk.gov source, a .nhs.uk source, the CDC in the US, the FDA in the US – what _seems_ to be the Canadian autism association – the Times, Guardian, Daily Mail (snigger) and erm, The Sun newspaper in the UK and a variety of US newspapers I don’t know very well aside from the New York Times and (I think) the Boston Globe.

And of course, there’s the ever-watching, ever-silent mercury militia. Hi guys :o)

In terms of numbers, I (_this_ site) get(s) around 1000 unique visits a day via the Hub. Its difficult to tell how many visitors the Hub itself gets because its not the sort of site that _gets_visitors, more the sort of site to _distribute_ visitors, but just about every Hub members places a small (less than 5kb) graphic on their sites. So far this month (7 days) this graphic has processed 86mb of data – this means that single graphic has been seen by 17,613 people. that works out to about 75,000 unique visitors a month, or 2,500 per day. And that’s not counting the over 400 people who access the feeds direct from the 2 feeds the Hub has.

This has all happened in less than 3 months. Incredible.

And yet, the Hub itself has become a victim of this success – its not a very flexible design and is begging for a decent bit of information architecture applied to it. I’ve recently expanded both the front page and the RSS feeds – this is just the beginning of what needs to be a fairly substantial overhaul.

I am delighted that so many people are interested in a more ‘no need to cure’ point of view than some people (ahem) might feel comfortable with – it gives me a sense of hope that our children and our adult friends and colleagues may have a slightly less judgemental future than was previously feared.

The Hub bloggers are doing a great thing – they are disseminating truth, respect, positivity, objectivity and tolerance. I thank each and every one of them and I promise to continue developing a site worthy of their efforts.

← Older Entries
Newer Entries →