Archive | February, 2008

Dore offers treatment for ASDs – but where is their evidence? And what about the ethics?

5 Feb

Dore is a business promoting a startlingly expensive exercise programme – which they have previously claimed can treat conditions such as dyslexia, dyspraxia and ADHD. Now, Dore seem to think that they have stumbled on a great new treatment for Autistic Spectrum Disorders (ASDs). However, their research seems to be rather lagging behind their beliefs.

Dore has been talking up a research project of theirs: they claim great results from “working with 1,000 patients suffering from the symptoms of high-functioning autism”, although only 56 people with a “formally diagnosed” ASD. Like all revolutionary new research, this was announced on the Dore Internet forum and published in – um – a local newspaper.

Now, I would argue that a trial with an n of 56 with formally diagnosed ASDs is – even if well-conducted, something that has been a problem for Dore in the past – too small to allow one to roll out a treatment programme based on the results. Certainly, it’s hard to discuss this research until it is published in a proper, peer-reviewed journal (presumably as a pilot study, investigating whether more research in this area is worthwhile).

However, when asked about the research, Dore’s Dr Roy Rutherford has decided on an unusual approach, stating that: “Dore is in preliminary discussions to work with some of the leading researchers in the UK in autism. I cannot tell you who this is yet”. This sounds rather like Dore has decided to first promote their ‘treatment’ for ASDs – even for the 1,000 people with ‘symptoms’ of ASDs included in the ‘research’ discussed in the local press, the fees for the Dore ‘treatment’ would have ran into millions of pounds unless waived or discounted – and only then do some credible research. If so, this is horribly unethical. One should also bear in mind that Dore claim to have spent £5m on research: if so, it is rather unfortunate that they have had to publish their ‘research’ on ASDs in a local newspaper, and not a proper journal.

It is often argued that ‘non-drug’ treatments such as Dore are necessarily harmless and benign. It might seem that – even though most of the children in Dore’s research on ASDs did not have a formal diagnosis – this does not matter so long as the parents believed that there were problems. This is false. While there are a number of risks, I’d like to end by pointing out some of the negative perceptions of those with ASDs and specific learning difficulties that can arise from Dore’s approach. One mother on the Dore forum – who put their child through Dore – states that:

L has none of those [autistic] traites left now and is a normal 12 year old, a relief after a learning needs worker told me prior to Dore that L would never make a life for herself, would never be independent because to her L was severely autistic. Pity the experts who tested her could not see it, but then again it doesn’t matter, L is no longer the struggling child she once was, Dore changed all that.

Firstly, there are clear benefits from a diagnosis of an ASD from a qualified professional – instead of a ‘learning needs worker’ or a Dore employee looking for ‘Cerebral Developmental Delay’. It can be useful to know whether someone does meet the diagnostic criteria for an ASD, and it is important to get an informed account of what their ASD means – for example, any competent professional will know that autistic people can often live independently and clearly do have lives.

Secondly, a proper diagnosis can be useful in order to assess the benefits (or lack of them) of any treatments. If a mother is lead to believe that her child will never be independent or have a life if allowed to develop untreated, it will be too easy to attribute the natural development of a growing child to the miraculous powers of the Dore treatment (or whichever other treatment is being used at the time).

Thirdly, this type of perception and (non)diagnosis impacts upon the lives of people with ASDs. If they are assumed to be helpless without Dore or some other ‘treatment’ (for example, the local newspaper piece on Dore claims that “a patient who has been unable to communicate throughout his life” went through the Dore programme – something that would have been impossible unless the ‘patient’ was able to follow instructions) this will not help to build an inclusive society.

With Dore, then, we see another expensive, unproven, ethically problematic ‘treatment’ for ASDs. Nothing unusual there – but this company has a lot of money behind it, and seems to be trying to expand. There is a real need to challenge this and to insist on an acknowledgement of the complex realities of ASDs and specific learning difficulties – in contrast to Dore’s tendency to reduce everything to ‘Cerebral Developmental Delay’ and to declare fabulous results which turn out to have been limited by Dore’s own apparent Research Development Delay.

MMR Still Doesn’t Cause Autism (and never did)

4 Feb

Yet another study will shortly be published that yet again shows no link between autism and MMR:

There is no evidence for a link between the MMR (measles, mumps, rubella) jab and autism, finds research published ahead of print in the Archives of Disease in Childhood.

The authors took almost 250 kids born between ’90 and ’91. 98 were ASD. 52 had special needs with no ASD. 90 had no special needs and were developing within ‘normal’ parameters. All the children had been vaccinated against MMR, but not all of them had been given both doses.

The team took blood samples and found no persistent measles infection, no abnormal immune response.

Results of the blood sample analysis showed that there was no difference in circulating measles virus or antibody levels between the two groups of children.

Tellingly, it didn’t matter which of three groups the team looked at – none of them exhibited any ‘bad blood’ whether they’d had both MMR shots or not. Or if the autistic kids had experienced regression or not.

The team further found no evidence of any kind of so-called ‘autistic enterocolitis’ – in fact no evidence of any bowel disorders of any kind were found among the autistic kids.

The alst line of the news report is very pointed:

The authors point out that theirs is now the third, and largest, study that has failed to show a link between the MMR jab and autism.

Quite.

Repeat after me – MMR doesn’t cause autism. It never did.

Awhile ago I wrote a piece on the history of the MMR hypothesis. You can read it here.

Mark Blaxill Thinks Bloggers Are Mean

4 Feb

Mark Blaxill, the token man of the mercury moms at SafeMinds, has written a lip-trembling post over on Age of Autism about how mean bloggers can be. Lets have a bit of fun with it shall we?

The rapid evolution of the Internet has created a host of fascinating, exhilarating and occasionally despicable new things. The Age of Autism is a blog and we’re proud to be a part of a new phenomenon called the blogosphere……But as one might expect with any new form of cultural expression, there’s a bizarre variant of the blogosphere out there. It’s a strange hybrid: it looks like a regular low end blog, based almost entirely on opinion, a dressed up version of the typical online discussion groups and chat rooms….In a disturbing way, this new hybrid has found its way into the debates and controversies around autism science…..Often connected with the so-called “neurodiversity” movement, many of these game players seem to define themselves by their own “autism”

So if I’m understanding Marky Mark, the blogosphere is a ‘new phenomenon’ upon which the light of the countenance of the Age of Autism has charitably fallen.

This ‘new phenomenon’ actually was first realised nine years ago Marky Mark. I await with bated breath Marky’s breathless announcement come 2017 that Age of Autism has discovered a ‘new phenomenon’ called Facebook. Truly the interweb is a wondrous thing. A piece of advice though Mark – never, ever type ‘Google’ into Google.

And these ‘low ends blogs’….my, my whomever could he be referring to? Surely not Autism Diva’s blog with a Google PR of 5 on the home page and over 1,150 Google backlinks to it? Or maybe Orac’s with a PR of 7 for the home page and which has over 6,100 Google backlinks to it? or maybe my own which has a PR 6 on the home page of the blog and over 2,700 Google backlinks to it.

Or maybe ‘low end’ might refer to a blog which has a PR of 3 on its home page and Google link operator can find no back link data for. I wonder, can anyone suggest a blog with user stats that low end?

Anyway, Marky Mark has a point to make and by god he’s eventually going to get around to making it dammit! Even if he has to rhetoricise our asses into verbal comas!!

But unlike people that engage in the blogosphere using their real names and identities, these avatars all have one thing in common.

They’re cowards.

Hmmmm, really? Is that why some people choose to blog anonymously?

I really hate to break this piece of news to Marky Mark but passing opinions online predates the web. Why go back to the old BBS’s and you’d find a whole bunch of people chatting away with (gasp!) fake names. In fact, I hear tell that some CB radio enthusiasts use fake names too!! The dirty cowards!

There’s a damn good reason why some people blog anonymously Marky Mark as I have good reason to know about – people who espouse similar views to you Marky Mark, target their children. People like John Best for example are very good reasons for preserving anonymity. Here’s what happens when one of his friends annoys him. What do you suppose he has in store for my child?

But who Marky Mark is really pouting about is Do’C and Interverbal, two bloggers who took the time out to look at a recent paper that Marky Mark was counting on to support his kook hypotheses. So annoyed by these two ‘low end’ bloggers (PR 5 on each of their blogs) that he elected to censor out the name of the blog they wrote at!

“Unfortunately, the main bloggers of [censored wackosphere site name] have taken the time to respond to almost all of the other blogs about this article

‘wackosphere’ (tee-hee!!) is the name Marky Mark has bestowed upon autism related blogs more popular than his it seems. That’s a lot of blogs.

So shocked was I at this blatant censorship that I nearly contacted the Ever So Important Editor on Age of Autism to ask if they would write a piece about this – after all they penned 10 blog entries last week decrying censorship – they must really hate it!

In fact so grasping does Marky Mark become that he actually says:

In fact, at a deeper level, there’s a widespread pattern of scientific intimidation and censorship underway in autism science that relies on a wide range of attack dogs…

Hey yeah – I know what you mean Marky Mark like what happened to Dr Paul Offit at the hands of the mercury militia:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil—it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

….
He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat—”I will hang you by your neck until you’re dead”—that Offit reported to federal investigators.

Or Paul Shattuck, also from the mercury militia:

One person said, “Don’t be surprised if you get a knock on your door in the middle of the night and I’ll be there.” Another message said it was easy in the age of the Internet to find out where people live.

Shattuck also had various utterly untrue allegations made about him by the NAA.

Or how about Arthur Allen and Professor Roy Grinker who have also been on the receiving end of threats of violence:

these people need to be horse whipped…

Or how about Ray Gallup, Director and co-founder of the Vaccine Autoimmune Project? here’s what he had to say recently:

Dear ****:

Since you seem to follow what is going on with the Leitch list let me know if Leitch, Deer and the others get hit with a fast moving truck or bus that leaves their carcasses mangled and bloodly on the street.

I will be devotely praying night and day that something like this happens to them and their followers. Especially since these creeps say such hurtful things to parents. They deserve all the best in something terrible happening to every last one of them and I will pray daily.

I usually pray for good things for families that suffer but in their case I will make a big exception.

Ray Gallup

Or what about this Marky Mark?

A-YEAR-and-a-half ago, a vaccines expert in the eastern US received a phone call at home. The man on the line did not identify himself; he simply stated the names and ages of the researcher’s two children and the schools they attended, then hung up. The threat was shocking, but not a surprise. “I get hate mail every day,” says the researcher, who asked not to be named.

Many vaccine scientists in the US have received similar threats in recent years. They are thought to come from a hard core of parents who, in the face of overwhelming evidence to the contrary, are convinced that small amounts of mercury in vaccines have made their children autistic. What’s more, they believe that researchers are complicit in the scandal.

How about what EoH member and mercury militia jackass Brian Hooker did to Dr Sarah Parker? He harasses her to the point her campus security services had to get involved and she sent this email to Hooker – which he proudly displayed online:

Date: Tue, 19 Apr 2005 14:03:17 -0600
From: Sarah Parker
Subject: Re: Sarah Parker on the show “To The Point”
To:
Cc:

I have received your phone messages (yesterday evening and today) and emails. I would like to inform you that due to your previous threat to me in November and the tone and content of these current calls and emails I consider these as threats/harassment as well and am documenting them with the campus police department. I respect your right to disagree and wish you would respect that same right with me. Please do not contact me again in the future.

Sarah Parker

How about Brad Handley of Generation rescue saying to me:

If we were on a rugby pitch, Kev, I’d put my boot in your eye and twist…

Marky Mark is quite right that there are wacko’s in the online autism community. All he has to do to find them is look to his left and right. He closes his diatribe with:

We need to defend some minimum standards for how people are permitted to participate in a public debate. At the top of the list of these standards should be this: if anyone wants to participate in a debate about autism, put your real self on the line: your real name, your actual body of work (if you have any) and your professional accomplishments and reputation. Put the things that really matter — your family’s future and your personal career prospects — out in public for everyone to see if you want to exercise the privilege of participation in civil society. If you’re willing to do that, then you have a right to be heard. If you’re not, then you should go back to your game and keep playing with yourself. Let serious people do serious work.

And he’s serious. He means it. How he:

a) Expects to set himself up as the arbiter of whats acceptable online and;
b) Expects people to be comfortable using their real names when he stands alongside the people listed above

I really can’t imagine. Believe me, if I’d known that pond scum like John Best shared a planet with me I would never have used my real identity. Its also quote clear that Mark Blaxills friends and colleagues hold no compunctions about besmirching reputations with groundless attacks and or threats of violence upon them or their children.

Look around you Marky Mark. That rarefied air you’re sucking down? Its the polluted air of the real wackosphere. A land where threats against children is fair game and where killers and paedophiles are welcomed in with no checks and open arms and the leaders of the many antivaccine kook organisations encourage and salivate after violence against anyone who disagrees with them.

Saint Stone of Kooks and the Removal of Gloves

2 Feb

The Eli Stone thing is very closely following the ‘fallout’ trajectory of the MMR/Wakefield program (Hear The Silence)over here a few years ago in that the protagonists were virtually canonised and the evil medicos painted as uncaring, duplicitous swine.

If the path of trajectory continues to be followed then Eli Stone’s canonisation should enjoy a brief, bright blaze followed by a long slow loss of interest from the general public and he will be relegated to one more point of disagreement that only matters to Age of Autism readers.

However, I do wonder if the Legal Editor at Age of Autism might be coming ever so slightly detached from reality:

Thanks to Eli Stone, our new patron saint of autism, we are no longer “Lost” to the mainstream media.

Well now I consulted my Reality Editor and they reminded me that Eli Stone is a fictional TV character. Maybe my Reality Editor needs to have a word with Age of Autism’s beloved Legal Editor. Then again, reality is not the strong suit of these guys.

Back in the real world:

Nancy J. Minshew is finally ready to take off the gloves.

After years of sitting back and hoping the science would speak for itself, the director of the University of Pittsburgh’s Center for Excellence in Autism Research has decided it’s time for her to take a personal stand.

Autism is not caused by vaccinations, she says, and those who continue to push that theory are endangering the lives of children and misdirecting the nation’s scarce resources for autism research.

“The weight of the evidence is so great that I don’t think there is any room for dispute. I think the issue is done,” said Minshew, who runs one of nine top autism research centers funded by the National Institutes of Health.

Good for her. Its about time the scientific establishment stopped leaving this up to one or two public figures like Paul Offit or Eric Fombonne and started addressing the issues in the real world.

The evolution of Eli Stone

1 Feb

This is a Guest Blogged piece written by new bloggers from Hollywood Spectrum.

For those who don’t know (I wish I were one of you), there is a TV show about to premiere called "Eli Stone". It was likely going to be a pretty run-of-the-mill premiere. Possibly, it was going to be a total non event.But, the plot includes autism. Not only does it include autism, but it involves a lawyer doing what has never happened in real life-he win’s a case about how mercury in vaccines caused autism in a child. This led to a number of news stories, internet discussions and blog posts.

Well, after the initial press on this, the American Academy of Pediatrics (AAP) sent a letter to ABC/Disney asking them to pull the show since it could erode confidence in vaccines.  Somehow this was characterized as big-bad AAP trying to bully ABC/Disney.  Now, Disney is a company that has revenues of nearly $9B per quarter.  Yeah, AAP was twisting their arm by giving them free publicity.

Did anyone really believe that ABC/Disney would pull the show?  I mean, really, they just got a lot of free publicity for what was likely to be a pretty forgettable show.   How can I say this was going to be forgettable?  Because the original script was something worth forgetting.  Consider when Eli Stone visits a Chinese acupuncturist (who somehow brings about visions in Stone).  The good Dr. Chen was given such amazing lines in pigeon English as:

"You go regular doctor? Dr. Chen not MRI."

and

"I have patient, you come back half hour."

and

"No good hate dead people. Relah. Think good memory father. Dr. Chen help ungrateful son" 

OK, so, the dialogue was lame.  And, believe me, this isn’t the only example.  A whole blog post could be devoted to it, but this is an autism blog not a TV critic blog.  Maybe Dr. Chen is  supposed to be "comedy".  But, is it OK to stereotype for comedy?  If so, how about stereotyping (incorrectly) autism for drama.  Let’s look at how about the "autism" part of the script is portrayed. Here is their stage direction for the William character from the script:

William doesn’t smile. His autism doesn’t permit it.

What?!?  Autism "doesn’t permit" smiling?  So, people who smile aren’t autistic?  That should bring down the autism "epidemic"!  Just reject the diagnosis for all the people with autism who smile.  My guess is that it would be a pretty rare condition then. 

In the original script, the fight is with an insurance company who won’t pay for the treatments of the young "William", who is autistic.  The first mention of the word "autism" comes when the mother is describing this situation:

My son has autism. He needs Risperidone every day..

Whoa.  Was that about mercury?  Nope.  It’s about Risperidone.  Yep, instead of mercury causing autism, the story was about how the fictional kid needed an off-label prescription for an antipsychotic drug and the insurance company wouldn’t pay.

How does that jive with the writer’s idea of autism?  Well, the mother describes the value of Risperidone as:

After a month on the drug, he actually smiled.

For the record, Risperidone is pretty serious medication.  It has been shown to benefit some people with autism.  But, "smiling"?  I guess that scripts don’t need science advisor approval before being approved.

Somewhere between first and, let’s face it, lame final draft and premiere, the story shifted to vaccine/mercury caused autism.  A story line guaranteed to generate controversy.  A story line guaranteed to get publicity.

It’s too bad.  Yes, the reliance of the original script on Risperidone might have caused some consternation amongst the autism community.  Yes, the stereotype of the kid "whose autism prevents him from smiling" was lame at best, damaging at worst.  But, insurance coverage for autism is a big deal right now.  A good presentation of how insurance companies deny claims for autism could have actually helped people and families with autism.

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