Archive | 2005

A Very Autistic Xmas….

30 Dec

….hurrah!!!

First off, its traditional to talk about what your stash was so here’s mine. First up was the traditional Dad pressie of socks. A nice 3 pack of Pierre Cardin beauties. I’m wearing them right now and can report positively on their efficient and comfortable foot covering qualities. I don’t think my socks will ever reach the same heights of fame as some socks have in the past but hey – they work for me.

Next up, my kids each got me my most favourite of Xmas pressies – a book. Each reflects my abiding love for all things historical, particularly British history, so I look forward to cosying up for the next couple of weeks and getting immersed in Tudor England, Norse legends and the British military.

My beautiful and wise wife got me 2 gifts, first was the new David Gray CD which is hauntingly good. The man has a voice that is as ‘right’ as the clear note one gets from tapping the side of a crystal glass.

The second pressie was a rather spiffy camcorder which means we’ll finally be able to make movies of the kids, something we couldn’t afford until we saw how cheap this camera was.

Life over Xmas is an interesting time when you have an autistic family member. Its a hell of a lot of change to have to deal with when you are someone who doesn’t cope well with change and the change in routine (parents home from work who usually aren’t, the bewildering concept of ‘presents’, a bloody great tree in the front room, lots of people dropping off or picking up pressies, cards all over the place) can be very confusing.

We try to maintain a balance. Our non-autistic kids need and deserve a Xmas with all the trimmings but our autistic kids can’t deal with too much Xmas so we scale back the decorations to a tree and a wreath on the front door, autistic kids presents aren’t (or are only partially) wrapped and we tackle the Xmas dinner in stages so that everyone who can cope with Xmas has enough materialism and face-stuffing to suffice and those who struggle don’t get too overanxious. For those people, doors to bedrooms are left open and favourite items are prominently displayed so that retreat is always available if needed.

Sometimes it gets too much no matter what you do and when you also have a young baby who picks up on emotional excess that can result in a run of bad nights. At these times, parents fall back into the ‘shift sleeping’ pattern of one staying up through the night and one taking on the day. For the one taking on the night this can have unexpected benefits as this parent has the chance to watch an entire footy match from start to end without any other adults complaining! Indeed, on particularly bad nights, this parent can watch _all_ the scheduled matches over the Xmas period thanks to Sky’s excellent ‘Football First’ program and the magic of interactive TV. This parent is happy to report that the lads have done well in the last few games and seem to rising clear of the relegation spots that looked so inevitable a couple of months ago.

One of the main areas to monitor is the social aspects of Xmas. Understandably, friends and family want to pop over to see the family, drop off and/or pick up pressies but these visits aren’t as simple as ‘popping over’ to an autistic person. The ground rules for each visit must be established with the visitor before they come over so that the purpose and length of each visit can be understood and tolerated and those rues must be adhered to. Depending on your social circle this can sometimes result in a few people who grumble but screw them – just don’t invite them next year. They take us as we are, not how they want us to be. Our friends are all magnificent in this respect and 95% of our families are as well. One or two can’t commit to putting others needs first but thats their loss. People popping over ad hoc is forbidden in our family. Its just not fair to our autistic kids and our kids come first.

All this organisation puts paid to the traditional British pastime of ‘getting bladdered’ for tired parents but luckily this means one learns to appreciate the glass or two one manages to get of the nice Soave or Chiraz. It also means that your Xmas’s become much more family-centric. Indeed, our whole lives have become much more family-centric since autism entered our collective life. Thats a present that is beyond value.

A Year Today

26 Dec

I don’t suppose any of us will forget the terrible events of last year. A wave of terrible size and power engulfed a massive amount of land and killed a heartbreaking amount of people. Some of the stories that came out were almost too heartbreaking to hear and some of the video footage was too awful to watch for too long.

One group of people who know better than most of you reading this blog about what that day was like and terrible price it took are the Vesessins who blog at Nidahas.com. As native Sri Lankans they were literally at the heart of the issue in a way those of us in the West simply couldn’t be.

In a country that suffers from divisions that run very deep, the overriding message one year on seems to be:

As we remember the thousands who went to the waves, and the many more who are now homeless, let us commit ourselves to bring about a safe and peaceful Sri Lanka for those who did survive. Let us always remember the truism which took a tsunami to bring to light. Above all, we’re all Sri Lankans.

A message of hope and one of a profound wish to end a fight after getting some real perspective on the fragility of humanity.

It saddened and angered me to learn not long after the events of last year that there were some in the autism community who wished to make political hay whilst the sun shone after the tsunami. One Rick Rollens, fellow parent of an autistic child decided to utilise the horrific reaction all people had to the word ‘tsunami’ to better make his point:

California’s Autism Epidemic Tsunami Rapidly Growing….In California’s developmental services system, 8 out of 10 persons with full syndrome autism are between the ages of 3 and 17 years old, 7 out of 10 under the age of 14. The tsunami has arrived.

Leaving aside the fact that Rollens is totally wrong in both his methodology and conclusions, the words and tone he chose to use were at best ill judged and at worst, incredibly tasteless and insensitive.

Firstly is the fact that he was using the word ‘tsunami’ solely as an attention-getter. It has no legitimate context with autism. Secondly is the incredibly insulting use of the word as it applies to autistic people. Comparing them to people flooded out of their homes and lives is very misrepresentative of the nature of autism.

Thirdly is the absolutely shameful belittling of the events of last year. Whatever we feel may _cause_ autism, the fact is that it is a neurological condition at bottom. To associate this state with the death of hundreds of thousands of people is mind bogglingly trite and facile. *These people are dead*. I winced when I first read Rollens words and hoped that none of the relatives of the victims, nor any of my Sri Lankan friends would read them in the first months after the Tsunami. To endure the pain of losing a loved one is the worst thing I can imagine, to lose them in such a way must be awful beyond words. To see one’s country ripped apart must be painful beyond belief. To hear some pontificating person attempt to trivialise their loss by attempting to squeeze political mileage out of it would’ve been just terrible.

It took me a year to blog extensively on either the Tsunami and Rollens ignorance. The reason was mainly that I didn’t want Prabhath or any of the other guys at Vesess to read about it too soon.

Words matter. It really matters what words people use and how they’re used. With words you can build up and knock down. Using words you can show a reality or twist it. There are a lot of people out there who need to think long and hard about the sort of associations their words create and whether they are mature enough to use illustrations from a perspective that is clearly beyond them.

A Statistical Year in Blogging

20 Dec

Its that time of year when we all look back at the year from the perspective of your own blogs/ideas/thoughts etc. I’ll have some more to say about that in a bit but firstly some incredibly dull fascinating visitor statistics for this site this year (excludes Bots,spiders and feed-readers):

This site has received *112,412 unique visitors* this year.
It has received *272,008 total visits* this year.
It has served up *2,609,187 pages* this year.
It has received *5,292,786 hits* this year.
This sites most popular day is a Thursday.
More *Americans* visit this site than any other nation.
This site has been visited by people from *152 countries*.
This site has *approximately 220 subscribers via Feed Readers* (most from Bloglines but an increasing amount from Rojo).
The most popular browser is *IE 6.0* with Firefox 1.0.? coming a very close second.
The site has been indexed by *45 Search Engines and Directories*.
The site’s most popular referrer is *http://cssvault.com* with nearly 20,000 unique referrers this year.
The site’s been found by searchers utilising *15,111 unique keyphrases*.
The most popular phrase to find me is ‘autism blog’ which brought 429 people to the site.
*52 people* have added this site to del.icio.us
I currently rank: 13,387 (285 links from 110 sites) on Technorati.
The site has a PR that fluctuates between 6 and 8 on Google.

Thats all very interesting and confirms my theory that my amount of readers vastly outnumbers my active commenters. As an aside, I’m very curious as to who all these lurkers are – if you fancy dropping a ‘hi’ to the comments of this post that’d be great – you can do it anonymously if you so desire :o)

This year saw me start blogging more about autism as a social/medical issue and less about it as it relates to my daughter. This is something of a shame as I know many people enjoyed reading posts about her. There are a few reasons why I stopped which I’ve discussed in other places.

Also this year saw the launch of Project: New which was an attempt to provide a starting point for new web designers and web designers new to web standards to get a good start in the field. It didn’t end up quite how I expected but I was very pleased with both the response it received and the end product itself. I plan on starting Project: New Part II at some point next Spring. Part II will concentrate on client and serverside scripting.

More recently, I came to the conclusion that whilst the blog was good for provoking discussion that that discussion frequently become bogged down in side issues (I’m as bad as everyone else in that respect) so I started up a forum to deal with autism from a scientific point of view to create a calmer and more rational place – the blog is more heat than light. I’m hoping the reverse will be true for the forum.

As for next year, I have plans. As I say, Project: New Part II is crying out to be written and I’m planning a ‘from the ground up’ revamp of the blog and forum. I want to present a more accessible environment and besides, I’m getting bored with this design ;o)

Who’s That Girl?

15 Dec

The five year old girl came carefully down the stairs (she felt unsteady on stairs generally) singing the latest Westlife single at the top of her voice. “YOUU LIFT ME UUUUUUUUUUUUUUUUUPPPPPP!!!”

Her Dad grinned to himself and recorded as much of the song as he could on his mobile. His daughters rendition of ‘twinkle twinkle’ was already his ringtone – the one where she’d mischievously substituted the word ‘diamond’ for ‘daddy’, making both her parents howl with laughter.

She came into the front room and had a brief acclimatising rock in front of the telly then grabbed the remote, switched to the DVD channel and used the remote to navigate perfectly to her favourite bit of her Bear in the Big Blue House disc (her overly anal in such matters Dad bemoaned the lack of good standardised interface design on DVD menu’s until her Mum told him to shut up).

“Wait a minute….ITS YOU!” Said Bear and sniffed the telly for a few seconds, an event that never failed to send the little girl into a fit of delighted giggles. Once finished, she rewound the DVD and made Bear sniff her a few more times, then she grabbed her own stuffed Bear toy and made Bear (via a tragic impression from her Mum) sniff her again.

Although the little girl was five she still used a feeder cup to drink from as she still hadn’t got the hang of ‘putting it upright’. A fact demonstrated in the interestingly hued furniture and carpet throughout the house. Today she fancied Sunny Delight, a fluorescent looking drink which helped with her occasional constipation.

Drink in hand (she pointed it out to her Mum to illustrate what she wanted) she walked over to the PC, grabbed the mouse, started Firefox (her Dad had banned IE from usage), clicked on ‘bookmarks’, scrolled down to her favourite game of the moment and completed the puzzle based game perfectly. As ever when he witnessed this event, her Dad wished he owned a digicam as he knew there were quite a lot of people who simply wouldn’t believe what they’d seen from this unchelated, uninjected 5 year old autistic girl who’d been diagnosed with Kanner’s autism at age three but due to her own abilities, perseverance and skills coupled with the love, acceptance and encouragement of her parents and siblings was making steady progress towards goals she herself felt comfortable with.

Her parents loved her very much. Just the way she was.

A Fertile Breeding Ground

11 Dec

I’ve said a few times on here and a few times on other blogs that it is dangerous and irresponsible to maintain an absolutist position on just about anything to do with autism. I can’t remember who said it but whenever I see someone claiming to know for sure what causes autism or what the best course of treatment for autism is I recall a quote that goes something like this:

Follow the man seeking answers, flee from the man who says he knows them all.

However, on occasions I have been known to break this self-imposed belief. This is such an occasion.

Skeptico is a blogger that has commented a few times on various aspects of the thiomersal/mmr/autism ‘connection – notably a thorough debunking of the RFK Salon.com piece earlier this year.

Skeptico mailed me today to draw my attention to a comment made on his site to the effect that the wearing of a tinfoil hat designed to prevent alien abduction can successfully treat autism.

As of Dec. 2005 a hat with velostat worn by autistic children has improved their performance markedly. Michael Menkin is seeking more autistic children in the Seattle, Washington area to try the hat. Some of the autistic children who improved after wearing the hat with velostat for over three months are not related to UFOs or any alien phenomenon.

The researhc of Michael Menkin into alien abductions, with interview of several people with encounter experiences, was featured on KINGTV Evening News Program on November 16, 2005.

This is the sort of shit that one has to wade through to find decent research about autism. Is it on a par with the whole thiomersal/mercury thing? Well yes and no.

No because I can at least see a theoretical connection even if I don’t believe that theory and yes because its another example of a theory driven by anecdotal, unverified, untested belief.

Up until Skeptico mailed me this story, my favourite other crackpot theory was the idea that plastic cups cause autism. Again, this is the sort of mindless crap that detracts from valid science, strips autistic people of the dignity they deserve and only extends ignorance.

Notable in the plastic cup story is the role of one Dr. Stephanie Cave, one of the darlings of the thiomersal/autism connection and listed on page one of the Generation Rescue Hall of Fame. She lent support to a theory that claimed:

…that a toddler became seriously ill and, eventually, “began to exhibit autistic behavior,” after drinking from a plastic spill-proof cup made by Playtex. [Dallas-lawyer Brian R. Arnold ] claims the spill-proof cup was designed in a defective manner that allowed bacteria and mold to build in the cup. Alleging the bacteria caused the child’s condition, Arnold accused Playtex of negligence in distributing a defective cup and demanded $11 million in damages.

Cave claimed that the bacteria and mold caused Dysbiosis, a medical term used pretty much exclusively by the alternative health movement.

She was abetted by William Shaw who owns a laboratory famed amongst thiomersal = autism believers as providing accurate tests for elevated mercury. Shaw said that:

…the child had elevated levels of yeast by-products, indicating a “yeast/fungal overgrowth of the gastrointestinal tract.” Dr. Shaw says such yeast infections cause autism.

Unfortunately for Shaw, it seems that the bacteria found on the plastic cup was not the same sort found on the child in question. Good to know that these labs that so many people claim are accurate obviously double check their work.

Autism is a fertile breeding ground for such hocus-pocus and rubbish because it defies current understanding. That we let this sort of thing grow unchecked is dangerous for the health of children (one wonders if this child went on to be chelated based on such a pack of ineptitude and assumption), dangerous for those of us who wish to find a bit of respect for the state of being autistic and ultimately dangerous to us as a society that we are so willing to let such people treat our children.

This is why we need proper, peer reviewed science performed by those who are proponents of theories and treatments that currently have no efficacy or safety studies. If we continue down this road then treatments like the wearing of a tin foil hat used to prevent autism and alien abduction and causes like a plastic cup will become the norm and our children will truly become lost – not in autism but in the real hell of a frenzied knee-jerk search to treat the increasingly bizarre and to forget about what our _children_ who happen to be autistic need more than anything else. I hope you already know the answer to that. If you don’t then I suggest you step away from the quasi-science.

Autism/Science Forum

9 Dec

I’ve set up a new resource.

Its a forum which I intend to use solely for the discussion of the science that supports/refutes various things under discussion that are alledged about autism.

Everyone is encouraged to participate, regardless of where one stands on the issue and all science is allowed to be discussed – whether its peer reviewed or not, I would imagine though that science that is not peer reviewed should be questioned by those who disagree with its conclusions.

Forum rules:

The forum rules are very simple. These forums will only be used to discuss the science that is used to support/refute certain allegations about autism. No discussion on any other topic will be entered into. As this will be a science based environment, the atmosphere should remain polite, with no profanity, abuse, short-temperedness, sarcasm etc. Polite disagreement is encouraged but you must be prepared to back up any quotes you provide with a scientific source. Journalists don’t fall under this category.

I’m doing this for a number of reasons.

Firstly, blogging software isn’t really up to the the task of ongoing discussions. Forum software is perfectly suited to that task. Secondly, it seemed to me that whatever subject I start to talk about lately always falls back to a discussion on the state of the science underpinning autism – providing this forum will hopefully mean a lessening of the inevitable dilution of the subject.

The forum is easy to use – create a username and password and then go and post or read.

Now, the thorny issue of my own beliefs come up and how impartial I can hope to be in allowing some things to be discussed. I hope I’ve shown that I don’t edit or delete anything unless its plain old abuse, illegal or if I’ve asked people not to. However, if the forum takes off then I _may_ need a few moderators to help with crowd control etc. In the interests of impartiality I’ll try and get mods from both the neurodiversity *and* biomedical belief systems. Thats for the future though.

Everything Must Change

5 Dec

It must be true – Quincy Jones never lies after all.

Change comes to us all – for some of us it means radically rethinking what we once believed to be true and for some of us it might mean rethinking something that has brought us fame and adulation.

For those that don’t know him Citizen Cain is a blogger who challenged David Kirby’s interpretation of the numbers as they related to a rise/fall in the rate of autism. Kirby claimed that the rate was falling. Citizen Cain showed him why and where he was wrong.

And for the first time, Kirby responded.

Understandably, Kirby doesn’t seem interested in mucking around in the data with me too extensively, or in answering my detailed questions. But in an e-mail, he did address the key point, and concede that “if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.” He also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

I suggest at this point you go and read the rest of Citizen Cain’s post from which I quote above. The links to the associated posts where he discusses his email correspondence with David Kirby are on that page too.

But lets reiterate. Kirby is not only admitting that if the _total cases_ of autism doesn’t fall then the jig is up, he’s also admitting that up until now his interpretation (and the source for that interpretation – one Rick Rollens) is wrong. Why? Because as he admits after Citizen Cain showed him his errors, whats important is the _total cases_ *not* changes in the rate.

After I read Citizen Cains latest post, I had a little niggle at the back of my head – something Kirby had said this year. So I checked my references and there it was. In an interview with the New York Times, Kirby said:

Because autism is usually diagnosed sometime between a child’s third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year.

*This* year. Not 2007. Why has Kirby added on 2 years to his interview? This interview with the NYT was conducted before Kirby’s admittance that it was the total case amount that was important not the rate change but thats the only real difference in the two statements. Now maybe I’m missing something but what are the extra two years for?

As far as I can see, when one takes the admittance Kirby issued to Citizen Cain and applies the same criteria to it then it should be the end of *this year* that we should see changes. Big changes.

Everything must change. We have 26 days before we know whether that change is something that I and a lot of others have to address or whether its something David Kirby and his followers have to address.

A Means To An End

28 Nov

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rashid Buttar Recommending IV-EDTA Based ‘Therapy’

22 Nov

Orac has a long and incredibly worrying post up that reveals that Rashid Buttar, chelationist supreme, has taken a very worrying step down the road to quackery.

A few months ago, a 5 year old autistic boy died undergoing chelation therapy. Defenders of chelation at the time pointed out that IV EDTA was not a recognised treatment for autism chelationists.

However, that form of chelation therapy is exactly the sort of therapy that Rashid Buttar is apparently now implementing as part of a new protocol.

Why? Defenders of Rashid Buttar claim that he promotes his own TD DMPS because its safe – a lot of us think its safe because it doesn’t do anything. So why would he switch from a chelator specifically marketed and lauded as ‘safe’ to one that is associated with the death of a child?

I find Rashid Buttars role in the whole damn thing puzzling – he claimed he didn’t have time to submit his TD DMPS for independent review as he wanted to spend his time helping kids. Thats a bizarre bit of logic when you consider that if he _did_ submit TD DMPS for peer review and it was successful (ahem) then he would be in a position to reach a hundred, no a _thousand_ times as many kids. And now this. A bizarre and frightening step backwards to using a technique that is outdated amongst legitimate chelators – in the field of autism its notoriety is ensured with the death of a small autistic boy.

And its not only IV EDTA – apparently this new protocol utilises Ozone…..why? There’s no science that suggests this is a good idea and Orac’s piece has a frightening description of what Ozone can do and how it seems ‘Dr’ Buttar is overriding known safe doses – something of an irony considering his most vocal supporters claim that its an overdose of a known safety limit thats caused what he claims to be treating.

Most worryingly of all, it seems that Buttar is _already_ using these methods. Last time a lot of us expressed unease and worry about the end result of chelation for autistic children. It looks like thats what we’re reduced to doing again. I’m sure his defenders will find some way to rationalise it but I’m left simply hoping Orac’s information is wrong and that even Dr Buttar wouldn’t be so foolhardy. Of course, simply hoping didn’t do a whole lot of good last time, did it?

Web Professionals: Who We Are Or What We do?

17 Nov

The big topic doing the rounds at the moment is the topic of professionalism for web designers/developers. The gist of the argument centers around a remark made by Andy, in an interview on Accessifywho said:

I believe that the time has now passed for those working with old fashioned methods to be called web professionals.

This lit something of a blue touch paper and prompted a flurry of blog posts. Molly said::

The essence of this new professionalism isn’t about being perfect at what we do. It’s being able to say: Hey, I don’t know that. Let me go find out.

And Roger said:

Web professionals who refuse to update their skills and insist on using outdated methods can no longer be called web professionals.

Strong words and words that are difficult to disagree with. Roger was worried that he would be accused of being elitist for saying them. A long time ago (in a thread I can no longer find) I espoused similar views and was called an elitist. What I failed to make my accuser understand was that its not about creating an elite, its about creating a level playing field where _everyone_ has a core set of competencies.

Jeff added to the debate today stating his belief that higher education is the answer – or at least the stumbling block.

Its a good point – there needs to be an educational response to this issue but its not enough. Lets look at the word ‘professional’ for a moment:

  1. Of, relating to, engaged in, or suitable for a profession: lawyers, doctors, and other professional people.
  2. Conforming to the standards of a profession: professional behavior.
  3. Engaging in a given activity as a source of livelihood or as a career: a professional writer.
  4. Performed by persons receiving pay: professional football.
  5. Having or showing great skill; expert: a professional repair job.

Dictionary.com

When we say that those who don’t use the latest techniques can’t be professionals, which definition are we using? The closest is possibly no.2 but as that is a continually evolving thing in our profession thats tricky. At least two definitions pertain solely to the fact that a professional can be considered professional solely if they make money from their chosen profession.

Not easy is it? What we mean by professional is really – someone who designs and build websites in a way we agree with. When enough people agree then we have a standard. Simple. Or it would be if it were not for the example of IE – by that logic IE is the standard we should adhere to for coding ambiguities.

The quotes I made above seem to indicate that the ‘stripping’ of the phrase ‘professional web developer’ from some FrontPage jockeys status would matter two shits to him/her. I’m guessing they couldn’t possibly care less. As long as they continue to get paid, they’ll continue to do their work as quickly and cheaply as possible. If you’ve ever bought your furniture from DFS or Ikea instead of having it handmade by a professional furniture designer I’m sure you can appreciate why the’d do that.

A year ago, I wrote two posts that touched on this issue. The gist was that the community doesn’t need more education – everyone from the lowliest FrontPage hacker to the highest standards purist knows there’s a shit load of information out there and how to find it. Its choice that makes the difference – which I think was the essence of Molly’s post.

The fact is that there is a sizable majority that are quite simply _choosing_ not to get involved. For whatever reason. We need to counter that with an accreditation scheme. Plumbers need to be certified, so do mortgage brokers and travel agents. I think web designers/develoeprs need to be too. Business people are far more likely to work with people who have a visible proof of a certain level of ability – if we made the accreditation revolve around modern web standards then we’re laughing.

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