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Lupron Rears Its Head

22 Feb

The issue of Lupron finally raises its head above the parapet of autism. I’m going to attempt to ‘bring together’ the various discussions that have sprung up and then have my say on the subject. But before I do, lets just clarify what we’re talking about.

There is an unsubstantiated theory put about by Boyd Haley and the Geiers that testosterone levels are raised in autistic people. There is a further unsubstantiated theory that high testosterone counteracts the bodies ability to be chelated of its mercury efficiently. That the excess mercury got there is also due to an unsubstantiated theory that thiomersal in vaccines is responsible.

The use of chelating agents (which alter the body’s chemistry) have never been tested for safety or efficacy for autistic people (who have chemically different brains than non-autistic people).

So, in my opinion, we have a potentially dangerous and thus far non demonstrably necessary treatment being administered to autistic people. It was put about awhile ago that a typical course of chelation should last 18 months to two years. Now we seem to be approaching that time scale for a lot of children and there seems to be little to no response (unless you believe the unverified claims of Generation Rescue), there’s now a casting about for a reason why the chelation isn’t working as was first thought.

Yes, I have my own opinion as to why it isn’t working. I’m sure you can guess what that opinion is.

But whats _their_ opinion? The chelationistas? Why, that all that pesky testosterone is impeding the chelating of all that pesky mercury. And what reasons are given for that idea? Why, that there are four times as many male autistics as female autistics.

Now that the testosterone theory is out in the wild, suddenly the chelationistas are ‘remembering’ that their kids seem to be developing quickly, that they have a lot of body hair, that they become violent during chelation.

Yes, I have my own theory why they become violent during chelation. I’m sure you can guess that opinion is.

And thats it. Thats why there’s a sudden mad dash for Lupron. So lets now look at how its used.

Quite simply, its being used because the Geier’s are ‘excited’ about using it.

Try going to the NAA website and ordering the DVD or CD from the Geier’s lecture this past weekend. You’ll learn about their work with testosterone and Autism. This research is in its’ infancy, but the Geiers are SO excited about this topic.

Onibasu.

Dr. Geier now has a testosterone study going on, I think it’s Lupron injections every 45 days? until age 12, while chelating with DMPS-TD. there’s some other stuff, too, he’s got I think 8 kids in the study, we’re working on getting all the stuff out of the way for allie Kat to participate, last I knew he had no girls.

EoH.

My daughter will be seeing the Geiers this winter/spring and we’re about to have her tested to see if their protocol is appropriate for her. I’ll report the results when we have them…but in the MEANTIME, you can watch the Reverend Lisa Sykes discuss her son Wesley’s progress after receiving Lupron treatments!

EoH.

Kathleen at Neurodiversity has a very thorough round up of this side of things which I strongly suggest you read. But lets not pretend – children are already being treated with Lupron.

So, just to recap – an unsubstantiated treatment is now being used to treat an unsubstantiated condition which allegedly aids an unsubstantiated process.

But what _is_ Lupron? Whats it used for?

Its used to chemically castrate sex offenders in the US and also to treat Prostrate cancer. Basically it inhibits testosterone. In females it can cause a drug induced menopause. Its only legitimate sue for children is to treat precocious puberty.

There’s been at least one lawsuit associated with Lupron.

Many women with endometriosis who have been given Lupron injections have had severe side-effects, including cardiac arrhythmias, dizziness, swelling, chest pain, depression and confusion, bone pain, extreme fatigue, vision loss, high blood pressure, and nausea. Some of the women claim their side- effects last long after treatment is completed. The plaintiffs in the lawsuit against Tap claim, for example, to have experienced serious injury after Lupron injections, “resulting in pain and suffering, disability, disfigurement, mental anguish, loss of the capacity for enjoyment of life, expense of medical care and treatment, loss of earnings, loss of the ability to earn money.”

This is a serious drug. Nothing to make assumptions about – nothing to treat _children_ with unless they have a diagnosis of Precocioous Puberty which can be tested for without needing to inject Lupron.

The science that underpins the Geiers is practically non-existent and based pretty much on either their assumptions regarding mercury or their assumptions regarding testosterone – neither of which are authenticated. You can view an overview of the bad science behind the Geiers suppositions at Bartholomew Cubbins site and at an ongoing discussion at the Not Mercury site.

What happens when Lupron is deemed ‘inefficient’? What will be the next inhibitor? What will be the next unnecessary chemical pumped into autistic kids to ‘uninhibit’ the chelation process? And lets not even start on the bizarre cognitive dissonance necessary to refuse to trust Big Pharma regarding thiomersal and yet rush to embrace it regarding Lupron.

Web Developers Are Idiots Too

13 Feb

Very infrequently on this blog, the two main areas of discussion (autism and web development) intersect. Today is one of those times.

You may or may not know that the US National Federation for the Blind are suing Target over their inaccessible site. The NFB alerted Target some months ago and to retrofit the changes would be easy so they can hardly moan about it – besides, do it right the first time, hire a developer who knows his job. Its not rocket science.

The really appalling thing has been the whiney response of the web dev community:

Filing a lawsuit after 10 months of their initial contact with the company (if this is true, a pretty short legal time frame even in this dynamic world) is an irresponsible use of our over-burdened court system.

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The bottom line is I will not be the burden on the tax payers of my state by abusing a law that was enforced by some special interest group in a court of law.

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The internet is not a birthright, neither is the phone, neither is buying an electric blanket at Target and it has nothing to do with lack of empathy. Blind people can’t drive cars either … shall we sue the auto makers that they aren’t making automobiles accessible?

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Yes, it’s bad form for sure. Who doesn’t know enough to use alt tags? But I certainly hope the lawsuit gets thrown out.

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Alt ‘tags’. Right.

This is not the sixties and we are not fighting an evil empire. This is simply a case of a retail company not putting enough time and thought into one aspect of their sales.

Src

I’d say there’s a whole bunch of people here who like to put other people in little boxes. What would the collective response be if Target suddenly stopped serving black people? Or Jews? Or Hispanics? Or women? Or gay men? There’d be outrage and quite rightly so. Discriminating against a person simply because of their level of ability is wrong. Legally and ethically.

This isn’t a case of having to go back and make large scale changes – _any halfway decent web developer already knows how to make a page that will at least comply to Priority 1 for christ’s sake_ .

And thats at the heart of both the 508 legislation in the US and the DDA over here – no one _wants_ it to come to a court case but the simple fact is that a lot of so called web developers are basically shit at their jobs. If they really can’t do it right then they should get back to something they _can_ manage – McDonalds are always hiring.

But then things start getting really nasty.

Whats ignorant is thinking disabled people are normal. They are not normal. Stop drinking the PC happy juice. The idea that everyone, regardless of their personal condition, has a “right” to the exact same life is one of the most ridiculous notions of the modern era. Here in the US we spend 10x more per year to send one disabled kid to a normal highschool than we spend on the smartest kid in that highschool. Then we wonder why our kids aren’t as smart as those from other countries. Chances are the disabled kid probably doesn’t even know the difference, its only so his parents can feel their kid is normal.

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I’m not ignorant to the plight of the disabled, be it from birth or some accident/problem during life. I have my own problems (although not to this extreme, I admit) and the one thing I don’t do or accept is whining and crying about it. Accept your limitations, revel in what you still CAN effectively do, and deal with the rest in a more dignified and appropriate manner.

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This is from a so called web development community – SitePoint forums. I’m ashamed to say I have bought books from them in the past but they can rest assured I won’t be doing so in the future. The opinions expressed in that thread (and I only went three pages in, I couldn’t stand the sheer idiocy on display) seem to me to demonstrate something clearly lacking in these people. Yes, they’re largely ignorant on a technical level (one of these goons said as websites were purely visual why should blind people expect to be able to use them) but the more disturbing thing, speaking as the parent of an autistic child, is the indifference bordering on malevolence these comments reveal on the part of the commenters.

So you might be thinking – ‘so there’s some nasty arseholes around – big news’. And you’d be right. Ask any parent of any person considered to be different and you’d find some fairly depressing tales about society at large. Better yet, ask the people themselves and you’d hear some true horror stories about the interaction between those considered disabled and those considered abled.

This is 2006. Its not the 19th century. However, I fear that the likes of the idiots quoted above are firmly in the majority – those who will campaign to put money before people and those who will indulge their dislike of anyone different from them. We need to find a way to get past this irrational fear and hate of difference or not only do we become ethically corrupt (or more accurately _remain_ ethically corrupt) we stagnate as a species.

Vive la difference. Celebrate diversity. Whatever. Just try to find a way past the prejudice of idiots – then we all win.

Autism Is A Gift

12 Feb

OK – before I start its important for me to confess to a conflict of interest in this matter. As a fresh faced young man, Sigourney Weaver formed part of my Godess Trifecta in that I lusted after her, Gillian Anderson and Geena Davis with equal amounts of teenage/twenties lechery.

Ms Weaver has recently finished filming Snowcake in which she plays an autistic woman whos daughter dies in a car crash. My good friend, the incomparable Autism Diva has written a piece about it here.

During an interview, Ms Weaver said:

“I think we have to begin to see it [autism] as a gift,” she told a news conference. “We may not understand what it’s there for, but if you’re in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is.”

I have to say that despite my teenage carnal desires for Ms Weaver (OK, OK, I still have them) I don’t agree with her stating that ‘autism is a gift’. I don’t agree with it for the same reason that I don’t agree with the ‘autism is hell/death sentence/evil/etc’ viewpoint. Both views, taken literally, are misleading and superficial. Its my opinion that autism simply ‘is’. To be autistic is to be autistic. To be right-handed is to be right-handed. To be gay is to be gay. None of the states of being have moral or ethical states associated intrinsically with them and they don’t, in my view, need that status thrust on them either.

That said, its difficult to disagree with the positivity my future bride Ms Weaver brings to the state of being autistic and how we as NT’s can relate to it positively.

As ever though, there’s a bunch of literalists who still can’t see the woods for the trees:

A gift to whom? Surely not the person with autism, or his or her family. Perhaps actresses in search of roles? If autism is a gift, what’s terminal brain cancer? Hitting the Lotto?

John Gilmore, EoH List.

…If I sent her a letter I think that it would be along the lines of telling her how very happy it would make me to have her experience this ‘gift’ in her own life, ie, by injecting HER with enough toxins to destroy her body and mind.

Robin Nemeth, EoH List.

Ms. Weaver is no doubt confused over the junk label “high functioning autism.” It is not too late for her to personally experience the joy of autism. I’m sure she could find one of those mercury lusting doctors to shoot her up enough Thimerosal for her to join the bandwagon of the neurologically injured. OK, that’s my sarcastic take.

Lenny Schafer, EoH List.

What a bunch of me-me’s. These are the people who refer to themselves, with no apparent irony, as the autism community.

However, there was one great post on EoH which I have pleasure in quoting in full:

Well, even though I know this is gonna open a can of worms, I agree with her. When I’m in the presence of people with autism, I do learn a great deal. I learn acceptance of others who I would not have accepted as people only a few years ago. I learn that the person with autism has just as much dignity and right to be respected as anyone else. I also learn what pure love is and how scary it is for people with autism to trust others because they are often ridiculed by others. I teach my daughter every day that having autism should be source of pride; to contrast, it certainly isn’t something she should be ashamed
of. Yes we work on healing her body, but I’m proud of her and want her to have pride in herself regardless of treatment status. Because people with autism can suffer with horrid medical conditions and the people who care from them suffer does not mean people with autism are not wonderful people. From what I read, that’s the meaning I got from her, that people with autism need love, respect, and acceptance.

Debi, EoH List.

Debi, if you ever read this, you may be alarmed to know that you’re frighteningly close to espousing something very very close to what I think of as neurodiversity. Good on you for seeing the bigger picture.

Then we swung back to comedy:

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

Erik Nanstiel, EoH List.

Something of an irony when one considers that in the EoH file repository is a document that contains the sentence:

Finally, for the ultimate inspiration, here is a video of actor Lou Diamond Phillips introducting a cast of recovered autistic children

EoH Files.

Many people on the EoH list suggested emailing the films writer Angela Pell to let her know that she obviously had no idea about the hell of autism. Apparently they missed the bit where Ms Pell is described as having an autistic son and therefore knows just as well as they do both the lowpoints and the highpoints of parenting an autistic child.

And you are the parent of a child diagnosed with autism, everyday you are immersed in your child’s life and you deal
with the hardships that come with autism. You have a right to say that. Weaver doesn’t. Weaver is talking about what other people can get out of people with autism. She is not part of our community, she hasn’t paid her dues.

John Gilmore, EoH List.

Just to reiterate for the hard of comprehension – Ms Weaver is an actress, playing a role written for her by someone _just like you_ – the parent of an autistic child. All the words she utters were put in her mouth by the writer. Her beliefs have come from interacting with Ms Pell, Ms Pell’s son and people like him – y’know – autistic people.

In the post quoted above Gilmore goes on to say:

Our children are gifts and we should be grateful for them exactly the way they are. This is exactly what the neurodiversity types are saying.

Not quite John. I don’t consider autism a gift or a curse – it simply is what it is. Also, no one is saying you should ignore bad situations. What I’m saying as someone who respects the state of being autistic is that _that’s_ whats important – respect. You don’t have to be grateful for anything other than the fact that you managed to have a healthy living child. Some people don’t even get that. Whining on about ‘its not fair’ is pointless.

Then there’s the usual mistaken identities:

Sigourney Weaver is more than welcome to join me at the IEP meeting at my son’s school. Maybe she can make them understand that my son has been granted the “gift” of a comprehension level of a preschooler when he is 9 years old.

Jane Milota, EoH List

I’m not sure I would consider the way other children treat my son “really good fun”. I wonder if he’s having fun when they pull his hat over his eyes or just grab it off and throw it as far as they can. It’s not “really good fun” for me to try to explain to him that these children are not his friends. Apparently it is “really good fun” for these children that my son does have “high-functioning autism” Maybe Ms. Weaver and Ms. Pell would like to take a trip to Long Island and see “the gift” my son enjoys every day.

Cathie, EoH List.

Both tragic, horrifying situations but *not the fault of autism*. One is the fault of a schools ignorance and one is the fault of bad parenting by the people Cathie’s son has to deal with.

We really do have to find a way to move away from demonising a state of being that simply is what it is. The fact that its still poorly understood, badly catered to and swept aside is something that parents should be campaigning about – not getting caught up in fictional causative arguments.

Peter Fletcher, Melanie Phillips and the Daily Mail – A Cracked Facade

9 Feb

The Daily Mail published another MMR piece earlier this week. As usual it had the predicted results in that it stirred up the usual frenzy of illogic and fallacy.

Why do I say that?

In order to explain we need to fast-forward a couple of days to where Melanie Phillips, Andrew Wakefield’s staunchest media supporter in the UK, published her own follow up to the Mail story. I urge you to go read both pieces now before you read the rest of this.

OK, done? Good.

So lets talk about what was said. Basically, the gist of both articles is now the medical community in the UK _have_ to take the MMR link seriously because Dr Peter Fletcher, ex-Chief Scientific Officer at the Department of Health has said a few things about it.

On the face of it thats pretty impressive – this isn’t some no-nothing from nowhere – this is an *ex CSO*. But once you get past the fact of who he _is_ and start to isolate what he’s actually _saying_ then, to borrow a phrase, the facade starts to crack.

First is the fact that this sort of argument – based on his good standing in the past – is a sort of reverse Argumentum Ad Hominem in that it is argued that it is equally or of more importance regarding who Dr Gordon _is_ as oppose to what he _says_. This is, of course, a fallacious position from which to start.

So what does he (and the original article) actually say?

[Dr Gordon]….has accused the Government of “utterly inexplicable complacency” over the MMR triple vaccine for children.

Thats simply an assumption based on his circular reasoning that the MMR has routine or above average negative effects: as an argument it relies on the reader agreeing that there is a case for the Gvmnt being complacent in the first place. Since the establishment of this case _is whats actually being debated_ its safe to ignore this as pre-conceived bias.

[Dr Fletcher]…..said if it is proven that the jab causes autism, _”the refusal by governments to evaluate the risks properly will make this one of the greatest scandals in medical history”_.

Well, d’uh. How is that news? Its obviously true and equally obvious entirely irrelevant to establishing a case for believing MMR has a role in causing autism. Its a tactical appeal to emotion – nothing more.

He added that after agreeing to be an expert witness on drug-safety trials for parents’ lawyers, he had received and studied thousands of documents relating to the case which he believed the public had a right to see. He said he has seen a “steady accumulation of evidence” from scientists worldwide that the measles, mumps and rubella jab is causing brain damage in certain children.

This is at the heart of the two articles. Dr Fletcher however simply invokes the spirit of these ‘thousands of documents’ and doesn’t discuss them or what they contain at all. It may well be that he’s hampered by the legal constraints of the case(s) in question but thats really besides the point. What we need to know is – what can Dr Fletcher _add_ to the debate? Both the epidemiology and the hard science have refuted the MMR link on more than one occasion. If Dr Fletcher has peer reviewed journal based evidence that contradicts or invalidates the science done so far then he should state it. At the moment he is simply repeating a fallacy of intuition, magical thinking and an argument to the future. None of these lend any scientific credence to making a case that supports the idea that the MMR jab caused or contributed to anyones autism. If there’s evidence lets get it peer reviewed and published in a respected journal – anything else is simply hearsay.

But he added: “There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves.”

This is a combination of Galileo gambit and a fallacy of the assumed but hidden truth. In other words its the invocation of a conspiracy theory. Its an easy thing to say because one doesn’t have to prove or even allege who these ‘powerful people’ actually are and thus there is no one available to defend the given proposition. I always think of this as the last refuge of the truly desperate. If someones case is strong enough then why resort to such a transparent and desperate tactic?

Clinical and scientific data is steadily accumulating that the live measles virus in MMR can cause brain, gut and immune system damage in a subset of vulnerable children,” he said.

It is? Where? In fact the vast weight of scientific evidence has very recently concluded that there is no link.

There was no credible evidence behind claims of harm from the MMR vaccination. This is the conclusion drawn by the Cochrane Review Authors, an international team of researchers, after carefully drawing together all of the evidence found in 31 high quality studies from around the world. They also highlight that the policy of encouraging mass use of MMR has eliminated the scourge of measles, mumps and rubella from many countries. _”In particular we conclude that all the major unintended events, such as triggering Crohn’s disease or autism, were suspected on the basis of unreliable evidence,”_ says lead author Dr Vittorio Demicheli who works at Servizo Sovrazonale di Epidemiologia, Alessandria, Italy.

By contrast, Dr Fletcher yet again fails to say _what_ this ‘vast weight’ of scientific evidence was, where it could be found and who produced it. He just says its there. And we should just trust him because he’s cleverer than us.

Yet there has been a tenfold increase in autism and related forms of brain damage over the past 15 years, roughly coinciding with MMR’s introduction

Really? Obviously Dr Fletcher (and the Daily Mail) don’t examine the actual science which states:

The new study, which involved 10,903 preschool children in the United Kingdom, confirmed the elevated autism rate, but clearly demonstrated that autism prevalence is not increasing.

Fletcher also makes the mistake of matching correlation with causation – a schoolboy error for any scientist.

He said there was “no way” the tenfold leap in autistic children could be the result of better recognition and definitional changes, as claimed by health authorities.

Another totally specious statement with nothing to back it up. Fletcher might well believe it but as he provides no evidence then its just an opinion. In fact, scientific studies in the US indicate the rise in rate _is_ down to better recognition and diagnosis.

“It is highly likely that at least part of this increase is a vaccine related problem.” he said.

Again, this may be Fletcher’s opinion but he provides nothing in the way of support for it. This isn’t science, this is just gossip.

And thats just about all of Dr Fletcher’s contribution to the debate. Fallacy, lazy reasoning, assertion and unverified claims. It comes as no surprise that other lazy thinkers hype such garbage when they have so little science to support their position.

Autism Hub

9 Feb

I’ve instigated a new project today that I’ve called Autism Hub.

The idea is very simple – to aggregate blog feeds regarding autism in one place. Its very difficult sometimes to extract meaningful information from the huge sea of data that comprises the Internet and there’s so much we’re in touch with now that we wish we had been when we first began this journey that it seemed a good idea to try and unify some of the pertinent content out there.

Obviously, my beliefs being what they are about autism, I’ve set a ground rule that all the blogs that form the Hub membership must adhere to the central concepts of a) respect for the condition of being autistic and b) not promote a ‘cure’ mentality. That doesn’t mean the blogs that form the Hub don’t discuss interventions such as speech therapy, PECS etc because some of them may well do.

Basically, what the site does on a technical level is to periodically grab the RSS or Atom Feed of the members blogs. It then extracts the latest post from that feed and enters the details of that post into a table in a database on my server. Whenever someone accesses the Hub site, they access the data in the database.

There’s also a directory listing of all the member blogs on the site as well as a link to their Feed. There will also shortly be a dedicated RSS feed for the last 10 posts across all Hub members.

The Hub site itself is at a very basic level of functionality right now to which I hope to add over time. In the future it may be that visitors become users and can create their own aggregated content from the feeds provided which they can pick and choose from and save their preferences.

In the meantime, go have a browse around – there’s about 14 members signed up so far. If you know of any blogs who you’d like to see added to the Hub or you yourself maintain an autism related blog you’d like to join, please let me know as per the instructions on the site.

For those interested in the technical details of how the code works I expect I’ll be discussing that in a separate post under the Right Brain category at some point in the near future.

Who’s Blog Is It Anyway?

1 Feb

And so, the Signal vs Noise debate rumbles on – a company who’ve been mildly successful with some intriguing and OK products and who up until fairly recently were well respected in the design/dev blogosphere decided to play the ‘holier than thou’ card when tagged with the ‘four things’ meme.

For the uninitiated, a ‘meme’ is like a viral game, comprised of a series of questions that is passed from blogger to blogger. They’re far from the be all and end all of the blogosphere and being tagged can induce feelings of ‘do I _have_ to?’ but at the end of the day, its just a bit of fun. If you don’t want to participate and you get tagged all you have to do is simply not post your answer. No one cares, no one gets hurt and the meme rolls on regardless.

The ‘four things’ meme is a series of questions about four things e.g. name four jobs you’ve had, four movies you could watch again and again. Utter bullshit stuff for sure and about as important as a wet fart but still, mildly interesting on occasion when the meme lands on the blog of someone you know or someone you admire but don’t know.

So what was 37signals response to all this?

The listed each question with ‘pass’ written into each answer, making it totally clear they felt the whole thing beneath them. A few choice comments were left, particularly this one from Matthew Oliphant:

This is what I take away from this post: “I hope people stop writing what they want to write about on their own blogs and write only about things I find interesting.”.

Realising that they’d pissed a few people off, the 37signals guys decided to invent a whole new meme (one supposes as some sort of ‘reward’ for us peons), entitling the post A meme worth spreading.

Great name. As Jon Hicks commented with masterful sarcasm:

Pass. I bow to your far superior meme creation techniques.

Jon went on to elaborate:

You know how I said that one of my concerns for 2006, was that blogging amongst the design community was becoming too serious and worthy? Well there we go…..After all if you can’t arse around on your blog, where can you? C’mon!

In that spirit of arsing around, I offer my own thoughts to the debate – during an idle surf I stumbled across what looked like an intruiging product. I dutifully took a screen capture which you can see here.

Please watch this space for details of my soon-to-be-upcoming court appearance.

Into The Unknown With The Unknowing

31 Jan

The unknown is exciting. As a species we seem innately curious about seeing whats over the next hill, beyond the next valley, what happens if we heat this liquid to its boiling point, etc etc. But fairly obviously, we quickly realised that if we didn’t exert some level of control over the things we were curious enough about to examine closely then the results were arbitrary and meaningless.

“Hey, look at that!” we exclaimed to ourselves, “we’ve just invented the scientific method. How cool are we?”.

Unfortunately, as well as being logical, nuanced creatures capable of appreciating such things as the pathos in satire we’re also reactionary and blinkered. As someone recently remarked:

Too many people on all sides of the debate(s) seem to wear blinders that prevent them from acknowledging how little we all know.

Wade Rankin.

A statement I fully support. However, there are certain things that we need to be certain about when we treat autistic children.

Is chelation safe? Here’s Wade again, quoting a commenter called Random John:

At any rate, it’s still pretty unclear why chelation therapy seems to be successful for some children, but not for others. The polarity of the thimerosal and chelation debates does not seem to cover the ground necessary to understand what’s really going on.

Which is very true. Unfortunately, its yet another example of shutting the barn door after the horse has bolted. To worry about these things after you’re already treating an autistic child with something like chelation is quite simply stupid. If there are people who are concerned about what effects chelation may or may not have on autistic children then basic medical principles need to be applied: first, do no harm.

That means you need to conduct safety trials before using something that has the following warning on it:

The use of this drug [EDTA] in any particular patient is recommended only when the severity of the clinical condition justifies the aggressive measure associated with this type of therapy.

Recently such people as Dr. Mary Jean Brown, Chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control claimed that if chelators were used properly then they’d be safe. I take extreme issue with this viewpoint.

Chelation is essentially a chemical process – it alters the chemical composition of the body. Bearing that in mind, consider the following:

This review focuses on recent advances in the in vivo study of the whole brain in idiopathic autism…..Diffuse abnormalities of brain chemical concentrations, are…found. Abnormalities of ….brain chemistry…are evident by early childhood….

Source

So, the brains of autistic people are chemically different then the brains of non-autistics. Given that fact, is it a) stupid or b) clever to use a process that alters the chemical composition of the person and which has never undergone any safety trials in regards to autism?

There’s a whole bunch of people here who need to take a drastic step backwards and do some basic safety trials on what is, irrespective of their beliefs, a poorly understood and potentially dangerous/fatal process.

Don’t ‘Dis’ The Ability

19 Jan

Autism can confer gifts as well as troubling comorbidities sometimes. Thats a message thats frequently overlooked when people talk about hell/abyss/misery/nightmare of autism.

Christophe Pillault, Olivet, France, was born in Iran in 1982. An autistic savant, he is unable to talk, walk or feed himself. He discovered painting, using his hands though unable to use his fingers functionally. He began painting in 1993. His capacities were discovered by his special education teacher and then encouraged by his mother. Christophe does not talk but expresses himself through his paintings. A singular figure in art, he paints with his hands and uses acrylic on paper, canvas and cardboard.

Here’s a link that contains a couple of examples of his work. Speaking as someone who works in a field that tries to express ideas and concepts through visual means I can only say how very good these are technically. Speaking as a human being with a capacity to appreciate art, I hope we can all see the beauty in what Pillaut sees.

The youngest of three children, Ping Lian has very limited communication and social skills and lives in a world of his own.

Once again, the sheer quality of the work is breathtaking. Lian’s savant syndrome has given him the gift of being able to perceive a level of detail that is far beyond most of us. Here’s some of his work.

Richard was born in 1952. When he was three years old his parents were told that he was moderately to severely retarded. He also showed considerable autistic behavior with the characteristic obsession for sameness, withdrawal, walking in circles, spinning objects endlessly, and a preoccupation with the piano striking a single key for hours at a time. He did not have useful language until the age of 11.

I think Wawro’s work is my favourite. The richness and depth of colour is so good. I hope to be able to buy some his work one day – if only in print form.

All these artists are being showcased at a New York exhibition. Lucky NY is what I say.

Nobody here seems trapped in a hell/nightmare/whatever. All I can see are talented artists whos savant syndrome has helped take their skills to very high levels indeed. The world would be a much more drab and poor place without them.

More Blog Housekeeping And Some Thanks

19 Jan

First the ‘thanks’.

I wrote a series of articles I collectively titled Project: New early last year. I wrote them to try and disseminate the idea of web standards to web developers who weren’t yet taking a standards based approach. The series takes you from taking an initial brief to cutting over the final project to the client – all with web standards, usability, accessibility etc to the fore.

After launch a few people emailed me to ask if they could thank me by way of making a financial contribution to which I replied that that was much appreciated but that I didn’t do it for the money but that if people really wanted to then they could buy me a little something from my Amazon wish-list.

Every so often then a little surprise package from Amazon drops through my letterbox and yesterday was no exception. I got back from work to discover a copy of The Elements of User Experience awaiting my return and a friendly anonymous note thanking me for my hard work.

So thank you Mr/Ms Anonymous, I’ll enjoy having a read of that, it was very thoughtful of you.

On a related note, I’ll shortly be starting work on Project: New Part II and will be again looking for expert contributors. I know Pierce from Distorte is up for it but if you, or anyone you know is also interested then I’d love to hear from you. This one’s going to be looking at server and client side scripting. You don’t need to be an out and out expert who knows everything – I want to discuss ways these things work for people new to them and how they can help a web designer/developer. Familiarity with Javascript or ASP or PHP or RoR is ideal.

Lastly, I’m afraid that I’ve been absolutely deluged with spam over the last few days. So much so that I considered turning comments off for a while but I think I’m getting on top of it now. This means that comment sensitivity is pretty high and thus you might stand an elevated chance of your comment being auto-deleted (in extreme cases) or moderated and placed in a queue. If your comments seems to disappear then give it a day in case I don’t get to it straight away. If its not there after a few days then its almost certainly been eaten – sorry in advance.

Drug Error, Not Chelation Therapy, Killed Boy, Expert Says

18 Jan

A report in the Post Gazette includes an interview with Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Atlanta-based Centers for Disease Control and Prevention. She says that:

“without a doubt” that it was medical error, and not the therapy itself, that led to the death of a 5-year-old boy who was receiving it as a treatment for autism.

Which is very interesting on numerous levels.

First (for me) is the statement that clarifies exactly why Tariq was receiving chelation: *”who was receiving it as a treatment for autism”*. That nicely clears up any remaining doubts that Tariq was there for lead poisoning removal. He was there for treatment for autism.

Secondly (and unsurprisingly I take issue with a lot of what Dr Brown claims) is this claim that it was not chelation that killed Tariq. That, to me, is frankly bizarre. Its quite obvious that it is _exactly_ what killed him. If he hadn’t been chelated, he would still be alive. Thats just simple logic. Further, the fact that he was being treated with something that has no proven (or even evidenced) positive effect on ‘recovering’ or ‘curing’ kids from their autism speaks quite clearly to me that it was indeed the chelation that killed him: No autism = no belief in thiomersal poisoning = no chelation = no death. Again, this seems entirely logical to me. EDTA, which is a chelating agent, killed Tariq. QED.

Now, where the ambiguity creeps in is the fact that Dr Brown is claiming that chelation, as a course of action, does not intrinsically harm kids. In fact she said:

She said there have been no reputable medical trials demonstrating the effectiveness of chelation as a therapy for anything but lead poisoning. But if it were administered accurately, the procedure would be harmless.

This is quite a statement. The way I look at it is this: nobody knows the cause of autism. It is likely there are numerous potential triggers. Given that we don’t know what even the chemical composition of the average autistic brain is how can _anyone_ possibly claim that a procedure that removes chemicals is harmless?

And again, I make the point that since chelation has no proven or evidenced positive effect on autism in terms of its removal/curing/recovery/whatever that its use in this case is _directly_ responsible for Tariq’s death.

And there’s more:

“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”

Mixed up? How can a trained Doctor who ostensibly was a chelationist mix up medications? I guess it could happen but it doesn’t seem likely.

At the end of the day, Dr Brown is offering conjecture. She may have read the autopsy report but her opinion on what Roy Kerry did and why he did it is a matter for an inquiry. At the end of the day a little boy is still dead because he was autistic. Chelation is still responsible for that death.

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