Archive by Author

Autism, Respect and the Mercury Militia

25 Oct

What was a disagreement about the causes of autism is widening into a war. This isn’t a war between parents and scientists. Its a war between one set of parents and a group comprised of other parents, scientists and autistics themselves. Its a war between flexibility and acceptance on one side and a rigid determination to ‘cure’ on the other.

To cure what? Good question. Some believe that autism and its attendant comorbidities are interchangeable. That constipation and a different way of looking at things are the same thing. That dyspraxia and a lack of imaginative ability are the same thing. Others believe that the two things are quite separate. That the comorbidities that are attendant with autism in _some_ people cannot be used to define autism. That the condition of being autistic bequeaths gifts as well as troubles (and it does bequeath troubles, lets not pretend it doesn’t) and that keeping the troubles is a small price to pay for keeping the gifts.

There are lots of questions that arise from these ideas of course but lets further examine the stance of the opposition to these two camps. For those that see autism as a medical as well as developmental issue there seems to be a residual pool of dislike, verging into outright hatred for those that don’t. They think that their opposition are abandoning kids to their horrible autistic fate. For them there are no shades of grey – its either black or white. These people also seek to play down and even attempt to rewrite official diagnostic criteria to downplay the ‘higher’ end of the spectrum.

Mr Lietch (sic) thinks it is in the child’s best interest to do absolutely nothing to ameliorate this condition [the writers son] . And, he and his associates knock parents for trying to help our children

John Best Jr

This condition. Autism, one assumes. The question to which I repeatedly put to John Best was what constituted autism? Best constantly (and still does) fails to appreciate the distinction:

…You claim head banging and feces smearing are not autism. Is this supposed to obscure the issue? These are not normal and are very much a part of autism….

John Best Jr

Up until now all we have is debate – its a debate that takes no prisoners to be sure, but its a debate nonetheless. However, things invariably take a turn for the worse:

Your neurodiverse pals who sneeringly refer to people who try to help children as “curebies”

Sounds diabolical doesn’t it? Us sneeringly cruel ‘neurodiverse’ (sic) want to stop people helping children. Something of bizarre belief seeing as quite a lot of people who consider themselves aligned with the notion of respecting autism are parents themselves. But wait! We forget that…

Anyone who is not chelating to get rid of the mercury is guilty of child abuse. Every doctor who is not telling their patients to chelate is guilty of malpractice….. Any parent who listens to the doctors tell them that there is no known cause or cure for autism is too damn stupid to have kids.

John Best Jr

Except of course the truth is somewhat different. The truth is (as I have repeatedly said) that respecting autism is not the same thing as respecting someone gastric issues. If your child smears faeces then find out why and intervene. If your child bangs their head on the wall, buy them a scrum cap, figure out why and intervene. If your child has gastric issues, find out what they are and intervene. *If your child is mercury poisoned then get a proper doctor to chelate them*. But don’t fool yourself that by removing someones need to bang their head against a wall you are removing their autism as you are not and cannot. that doesn’t mean you shouldn’t do it. It does mean you need to have realistic expectations. It does mean you need to be prepared to look at your child at the beginning, during and end of the process of treatment you have for them and say ‘I would love you no matter what’. You need to understand that because someone can’t speak doesn’t mean they can’t hear and to hear who they are described as ‘rotting in an abyss’ or ‘worse than hell’ or ‘diseased’ is going to do that child no good at all.

Frequently those if us who believe in acceptance are told by those that don’t that we are ignoring childrens needs:

And, Kev, have you done research on the trailer-dwelling coo-coos you now are affiliated with? You keep harping on the symptom profile of autism. Look, mate, our kids ALL share the same physical symptoms. I had twin autistic boys over to my house this weekend. They are six. They’ve never been treated. They can’t talk, much less function, they require 24 hour care. They have all the same physical issues my son HAD, which have since resolved. In your coo-coo world these parents would do nothing. Shameful and idiotic.

JB Handley

I have to admit to not being too sure what ‘coo-coo’ means but I’m assuming its not good. As ever though, the point is missed – no-one, repeat *no-one* is saying parents shouldn’t intervene where kids can’t talk or can’t function and I challenge JB Handley (or anyone else) to find any statement where I have advocated that belief. Its increasingly hysterical fear-mongering because its rapidly dawning on these people that they are looking increasingly fundamentalist and fringe.

You might note I’ve quoted extensively from JB Handley and John Best Jr here. I do so because they are both strongly affiliated with Generation Rescue, the group that apparently gives parents the knowledge to make an informed choice. Yeah. Knowledge like:

There is no evidence to suggest that autism is genetic. No autism gene has ever been found and the search will be endless – how can you have a gene for a mythical condition? Autism is mercury poisoning

Generation Rescue.

So, John Best Jr and JB Handley are all about promoting choice and informed decisions. So much so that they launch into full on attack mode and misrepresent people’s beliefs. Sometimes the attacks get very, very personal indeed:

Muslim terrorists who fly planes into tall buildings have a different set of beliefs than others. Your neurodiverse pals who sneeringly refer to people who try to help children as “curebies” and go to extreme measures in attempts to discredit those people are in the same class.

John Best Jr

John Best associating the World Trade Center attack with my belief that acceptance and flexibility is best. I couldn’t quite believe he’d actually said that so I asked for clarification:

You spout your nonsense in much the same way that terrorists shout for Allah before they blow things up with bombs strapped to themselves. That agenda is more than a little bit wacky to most people who are thinking straight.

John Best Jr

Yup, he meant it all right. Don’t forget, John Best Jr is a ‘Rescue Angel’ – one who is charged by Generation Rescue with informing parents about mercury and chelation. He is a spokesman for Generation Rescue.

The populace of Generation Rescue have a particular dislike of Kathleen Seidel. They see her as the ‘spokesperson’ of ‘the neurodiverse’ probably because of the domain. In a very disturbing attack, Best again mistakes autism with comorbidity, goes after Kathleen and at the same time confirms that for him, ‘better dead than autistic’ is certainly true:

..So they miss out on curing their children and the kids wind up spending their lives in institutions. In effect, they never enjoy one second of the lives they could have had if only the mercury had been removed from their brains. Ms Seidel might as well have put a bullet in those kids so they would not have suffered. Does that sound about right, Kevin?

John Best Jr

One wonders – is ‘better dead than autistic’ a policy decision of Generation Rescue?

John Best, that (typical?) fine, upstanding member of Generation Rescue also has views on the failings of the diagnostic criteria for autism:

Your adult Asperger’s friends would have been called by a different name when I was young and nobody was aware of the effects of the mercury they’ve been shooting into us since the 1930’s. They would have been called nerds.

John Best Jr.

Nice.

Best is, of course, attempting to paint all within the ‘neurodiverse’ (sic) movement as AS. Of course, his theory founders on the fact that it is not. But still, I wonder – is insulting autistics another policy of Generation Rescue?

I don’t believe for a moment that everyone in the Biomed community thinks like Best, or Handley come to that, which makes it a pity that so very many in the Biomed community see that our thoughts as a threat to them – so much of a threat that even an appalling loss of life such as the World Trade Center attacks is not above being denigrated in an attempt to demonise people such as I.

I’ve said it before and I say it again now. The Biomed community needs to take a long hard look at itself and who its most vocal proponents are. Do you honestly believe that your cause is well served by referring to others as akin to bombers? Or child abusers? or nerds?

Is this something you really think will attract people to your way of thinking?

Is this a position from which you think is substantial enough to build from?

Are these words which you feel serve you well, personally?

Splitting AJAX Returned Data

21 Oct

I’m working on a new product site for the company I work for at the moment and am trying to utilise as much sensible AJAX as possible in order to enhance the usability of the pages without destroying the IA or accessibility.

One of the intriguing challenges I came across today was using innerHTML in a more refined way.

Lets say I have data I need to return from a PHP script that I need to funnel into separate markup elements when they’re returned to the page. How to do this perplexed me for awhile – my experiences of innerHTML was that results are returned in a big chunk.

First lets have a look at the PHP:

$type = $_GET['type'];

if($type == "1"){
	echo "Vat No";
        echo "";
}

And the markup I wanted to receive each of these two strings was as follows:

<p id="label"></p>
<p id="inputElem"></p>

*NB: No, I didn’t really put my form elements into p tags, this is a smaller example of what I did.*

Obvious what I want to do isn’t it? I want the phrase to go in the ‘label’ id element and the field to go in the ‘inputElem’ element. Here’s the Javascript I started with. First we set up the AJAX connection:

// 'xmlhttp' variable will hold the XMLHttpRequest object
var xmlhttp = false;
        
// If the user is using Mozilla/Firefox/Safari/etc
if (window.XMLHttpRequest) {
        xmlhttp = new XMLHttpRequest();
        xmlhttp.overrideMimeType('text/xml');
}

// If the user is using IE
else if (window.ActiveXObject) {
        xmlhttp = new ActiveXObject("Microsoft.XMLHTTP");
}

And after that I declare a function that can be called onclick later:


function getUK() {
	var lB = document.getElementById("label");
	var iE = document.getElementById("inputElem"); 
 
	var url = "_inc/vat.php?type=1";    
	xmlhttp.open("GET", url, true);
    
	xmlhttp.onreadystatechange = function() {
		if(xmlhttp.readyState == 4) {

			var r = xmlhttp.responseText
			lB.innerHTML = r;

		}else{
			lB.innerHTML = "Error";
		}				
	};
	xmlhttp.send(null);  
}

Which is crap. I can’t get both elements in and seperate them. So what we need to do is make our string passed through from PHP to actually be an array object that we can split. So we change the above PHP to this:

$type = $_GET['type'];

if($type == "1"){
	echo "Vat No|";
}

Now we can refer to the responseText as an array like so:


function getUK() {
	var lB = document.getElementById("label");
	var iE = document.getElementById("inputElem"); 
 
	var url = "_inc/vat.php?type=1";    
	xmlhttp.open("GET", url, true);
    
	xmlhttp.onreadystatechange = function() {
		if(xmlhttp.readyState == 4) {

			var r= xmlhttp.responseText.split("|");
			lB.innerHTML = r[0];
			iE.innerHTML =  r[1];

		}else{
			lB.innerHTML = "Error";
		}				
	};
	xmlhttp.send(null);  
}

The important lines are:

var r= xmlhttp.responseText.split("|");
lB.innerHTML = r[0];
iE.innerHTML =  r[1];

in which we split the string on the ‘|’ character (or any other character you care to use yourself) and then refer to individual elements in the array in the appropriate place.

Autism: A Novel Form Of Mercury Poisoning

14 Oct

Many in the Neurodiversity and Biomed communities are aware of this paper. It forms one of the lynchpins of the Biomed communities belief system – that autism and mercury poisoning are the same.

I’ve long been confused by this belief. Its plainly wrong and I’m amazed so many seemingly intelligent people believe it. I’ve posted about it numerous times both on here and in the comments of others blogs and the answers from its proponents when I question it veer from outright hostility to laughter at my supposed naivety in not being able to see ‘it’.

Its quite obvious to me that the symptoms of mercury poisoning tally very loosely with some comorbidities of autism but that as these things _are_ comorbidities, they cannot be used to diagnose autism and that therefore the two things cannot possibly by the same thing.

Just for your own information, here are the clinical symptoms of mercury poisoning and here is the diagnostic criteria for autism. But don’t just read the links I provide, go find some of your own.

After you’ve read around a bit you’ll probably conclude as I did: The idea that the two tally is ridiculous. However, Kathleen made me aware of a commentary piece in Pediatrics that backs up my position. I didn’t even know it existed until now so ‘thanks’ to Kathleen for posting its details.

Here’s a few quotes from the commentary – the full piece is available from the link I provided.

In mercury poisoning, the characteristic motor findings are ataxia and dysarthria. These signs, along with tremor, muscle pains, and weakness, are noted on relatively high-dose exposure, acute or chronic. In 3 Romanian children accidentally exposed to ethyl mercury in a fungicide, these same symptoms were prominent. The outcome of fetal methyl mercury poisoning in severe form also included spasticity. In contrast, in autism, the only common motor manifestations are repetitive behaviors (stereotypies) such as flapping, circling, or rocking. Persons with Asperger syndrome may be clumsy, and hypotonia has been noted in some infants with autism; the frequency of clumsiness and hypotonia in autism spectrum disorders is not established. *No other motor findings are common in autism*, and indeed *the presence of ataxia or dysarthria in a child whose behavior has autistic features should lead to careful medical evaluation for an alternative or additional diagnosis*.

Other signs that may appear in children with chronic mercury toxicity, such as hypertension skin eruption and thrombocytopenia are seldom seen in autism.

When severe mercury poisoning occurs in prenatal life or early infancy, head size tends to be small and microcephaly is common. Prenatal exposure to other neurotoxins—lead, alcohol, and polychlorinated biphenyls, for example—also predispose to decreased head size. In contrast, in autism increasing evidence indicates that head size and, as measured by volumetric magnetic resonance imaging, brain size tends to be larger than population norms.

At sufficient dose mercury is indeed a neurotoxin, but *the typical clinical signs of mercurism are not similar to the typical clinical signs of autism*.

Mercury poisoning and autism both affect the central nervous system but the specific sites of involvement in brain and the brain cell types affected are different in the two disorders as evidenced clinically and by neuropathology.

Nonspecific symptoms such as anxiety, depression, and irrational fears may occur both in mercury poisoning and in children with autism, but overall the clinical picture of mercurism—from any known form, dose, duration, or age of exposure—does not mimic that of autism.

What Am I Missing?

13 Oct

JB Handley, golden boy of Generation Rescue recently spoke to another newspaper. I thought the reporter did a very good job of showing both sides of the issue (Kirby, Olmsted take note).

I did however, have to read the article a few times until it sunk in. These were the passages that confused me.

Jamie’s moods progress fluidly from joy to concentration to panic. He has full run of his parents’ sprawling home, a hypoallergenic realm with wool carpets, insulation made from blue jeans and HEPA filters to clean the air.

One afternoon this summer, Jamie dragged his father by the finger to a mattress in the middle of the basement floor and, holding onto both of his hands, began jumping up and down, lofting higher and higher with each leap. The game was an autistic obsession. The blond boy sprang up again and again, never tiring, his face frozen in an expression of total joy.

Jamie eventually moved from the mattress to his train set, another obsession, and later to the table, where he covered reams of paper with spiraling circles, using his teeth to uncap each pen in the box until all the lids and pens lay on the floor where he cast them aside. All the while, he didn’t speak a word.

Three months later, Jamie had learned to point at things he wanted and to wave goodbye. He still screamed shrilly, ran back and forth, and didn’t speak in front of a reporter. His parents have augmented the biomedical regimen with other treatments—speech and occupational therapy and applied behavioral analysis, an intensive program that teaches autistic children to mimic “normal” behaviors, like waving goodbye.

So what am I confused about? Well, Jamie sounds exactly like my child. She does all the things Jamie is listed as doing above. In fact, in terms of her progress, she sounds ‘further along’ than Jamie. She has a few words now and the beginnings of a sentence or two although of course, like Jamie she has setbacks and meltdowns.

In fact the only appreciable difference between them as far as I can tell is that JB and Lisa chelate Jamie and we don’t chelate our daughter.

As I say, I’m totally confused. I thought chelation was supposed to ‘cure’ or ‘reverse’ autism? I was expecting to read about a Son-Rise style reversal where Jamie is verbal, engages constantly with the reporter etc. What I’m reading here is the normal progression of an autistic child. Now, granted I don’t know the exact program that Jamie is on but I know he must’ve been on it for a few months now. I’m also aware that he’s on TD DMPS. Read into that what you will.

I don’t mind admitting I’m a bit shocked by this. I was curious as to what a ‘recovered’ autistic child would be like and now it seems I have my answer – they’re just like an autistic child but without the sometimes painful comorbidities. If the Handley’s have removed those painful comorbidities then they’re to be congratulated. I am, however, at a loss to explain their statement that:

evidence that their cure is working can be seen in Jamie’s behavior

Cure for what? Mercury poisoning? Possibly. Autism? I really don’t think so. I didn’t before but I’m even less convinced after reading this.

The End

10 Oct

This is the last post that I’ll be making concerning Megan directly.

It seems that there are a lot of people who don’t appreciate the fact that I write honestly and openly (within reason) about my daughter and some aspects of our life together. That takes on a variety of forms. From some people it manifests itself as invective against me or (incredibly) against Megan herself. This has become increasingly hard to bear.

For others it seems that this takes the form of seeing what I write as a personal attack on them. To a large extent thats their issue. I say nothing on here that I haven’t said in the appropriate places. However, its becoming increasingly apparent that what I talk about on here in respect to Megan could have serious repercussions for certain aspects of her life. I don’t want, either directly nor indirectly, to jeapordise these vital aspects of her development so I choose to remain silent on these issues where they affect Megan directly from this point on.

This blog first started as a personal account of Megan’s development. It was my personal wailing wall and we hoped it would be (in times to come) our scrapbook of the various things in Megan’s development we could look back on and relive.

I have recieved the greatest amount of feedback of any of the subjects I talk about on this site on issues regarding Megan. People want to know how she’s doing and for far flung relatives the blog served its primary function of an online diary. For friends and colleagues made online I know that discussing Megan’s issues provided a mechanism to express thoughts, fears, hopes and opinions regarding their own autistic children. By and large my posts on this subject were positive and people saw them in that light. I received on average 4 to 5 emails a day asking how Megan was doing with (for example) Melatonin or if her huge progress at school last year was being maintained. Sometimes people felt they ‘know’ Megan well enough to see aspects of their own kids mannerisms or behaviours and this encouraged them to talk about things either in the comments or via email that they might not have otherwise asked. A lot of my web developer colleagues have professed that they knew nothing about autism until they read about it on here and feel that through coming to know Megan – albeit in an abstract way – they have a greater understanding of the nature of autism.

To all these people – I’m sorry. It gave me as much pleasure to write about Megan and her progress as it did for you to read about it. Unfortunately, we live in a world where these things can be used as weapons against you and I can’t expose Megan’s developmental progress to such a risk.

Downturn

7 Oct

I try and maintain a positive outlook about autism at all times. Its not hard to do as I see the evidence of lives lived as their owners want all around me. I gain hope from reading the blogs of AutismDiva, Amanda Baggs, Alyric, Larry Arnold and many others and I see their belief, based on their own life experience of autism as a way of being.

But I won’t pretend its not hard sometimes. Not to wish for a different sort of daughter, no. That idea is not part of neither my wife’s nor my beliefs. What we do wish for is that life could be easier. Autism does make it hard sometimes. Not intrinsically I hasted to add – there’s nothing we find massively difficult about our daughter. Its _reactions_ to autism that make autism hard.

For example, we’re trying to arrange delivery of a large item to our home. Modern delivery systems seem to have dispensed with the idea of customer service. Instead they say – ‘we’ll be there sometime between 9 and 5 on Tuesday’. We ask for an exact time as we’ll need time to prepare Megan for the intrusion into her home of a stranger. They can’t (or won’t) provide it. So begins a battle of compromise until we’re all happy. Except we’re not. We’re reduced to getting an hours notice and we have to put Megan in the bath and shut the door so we can take delivery of our product without her having a meltdown. Great – Megan has to compromise. Again. the company we’re _paying_ for the ‘service’ don’t. Again.

Unfortunately, something a bit more serious than this intruded into our lives yesterday. As some of you may know we have Megan is in a mainstream school. She started last year and had a great year, making leaps and bounds of progress.

Unfortunately, both of her learning assistants left at the end of last year so Megan had to start the school year with two new support assistants, a new form teacher, in a new classroom with an increased amount of pupils.

Yesterday, one of her new support assistants gave her notice in. The school are starting to make noises that they feel Megan can’t handle the new environment.

I sat there, stunned, as they outlined all this to me (my wife’s not well and couldn’t attend). Up until now, both support assistants had been saying how much Megan had achieved and how positive things were. As far as we knew, this new year was going well. Yes, Megan was reacting to the change – sometimes negatively – but thats to be expected. The amount of new things she had to cope with made that inevitable.

And things started off like this last year but we stuck with it, _Megan_ stuck with it and got so much out of the year as a whole. She made friends, she participated in the lessons, she got gold stars for good behaviour.

And now this. We feel like the support assistant who is leaving has jeapordised Megans whole future at this school. She stated as part of her reason for leaving that she couldn’t reach Megan. This left us in bits. After being with Megan for _less than 2 months_ she feels Megan is unreachable? And the worrying thing is how much credence the school are giving this. They’re not interviewing a replacement, they’re cutting her attendance down to half a day again and they’ve asked us to ‘take a look’ at the one special school in our area.

Thing is, we already _have_ taken a look at it and we didn’t like it at all.

Why does _Megan_ have to suffer because someone else can’t do their job? Why do we have to worry that our non-verbal daughter might have to go to a school where a taxi-driver takes her and picks her up? Why should we have to again accept second best for Megan when the only reason we have to is that the facilities don’t exist? You can bet that if there were a shortage of schools generally people would be falling all over themselves to address that need.

Getting Megan into her current school, fighting to get her a Statement to address her needs was long, exhausting and thankless (Amusing side note: After this battle was fought and won over a 6 month period of constant wrangling I told my Dad we’d got everything we fought for and my Dad said ‘ooh, that was lucky wasn’t it!’ Thanks Dad.) and now it looks like we’re going to have to do it all over again.

As a blogger comrade of mine frequently writes: ‘autism its not like you think.’ To which I’d add, ‘but bureaucratic jobsworths exist everywhere and act exactly as you’d think’.

Where Are All The Adult Autistics?

5 Oct

Anyone remember David Kirby?

Citizen Cain who had a dialogue going with Kirby for awhile probably does. Unfortunately, since CC showed Kirby how wrong he was Kirby’s gone very very quiet on that front.

One of the big – if not the biggest – dependencies that the whole autism = thiomersal poisoning rests on is the existence of the so-called ‘autism epidemic’. Without the ‘epidemic’ there is no rise in prevalence and without a rise in prevalence there is no mystery surrounding the causes of autism. In fact, if there’s no epidemic then this refutes the idea that thiomersal causes autism as the amount of thiomersal (before its removal) in vaccines rose sharply. Without a corresponding ‘epidemic’ the whole shebang is dead in the water.

One of the key points then become the existence of adults on the spectrum. If they exist in large numbers then there can be no real rise in prevalence and hence no epidemic. As David Kirby himself said:

When it comes to autism, here is one of the key questions we should be asking: if autism…..has always been prevalent at the same constant rate, then where are the 1-in-166 autistic 25-year-olds (those born in 1980)? Where are the 1-in-166 autistic 55-year-olds? Why can’t we find them?

David Kirby

Firstly, lets note that the 1 in 166 figure is in hot dispute and based on the California DDS numbers which California themselves say are not reliable for tracking autism prevalence (see Citizen Cain link above).

The big problem with answering Kirby’s question is that these people are not tracked and recorded accurately – or at all in some places. However, thats not the point. Kirby is saying they don’t exist in high enough numbers. Whilst its impossible to prove or disprove that exact point its easy to demonstrate that there are a _lot_ of adult autistics.

A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:

Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

AYRSHIRE AND ARRAN
It is apparent that information collection and collation for adults is almost non existent.

DUMFRIES AND GALLOWAY
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

GRAMPIAN
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

HIGHLAND
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

LANARKSHIRE
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

ORKNEY
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

Pretty interesting stuff I think you’ll agree. This means that about 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis.

A secondary question also of note asked:

What changes are there in demand in the last 5 years? Are there increased numbers? If so, what do you attribute this to?

Just about every area reported an increase and all areas attributed to either, reclassification of some people (especially adults) from Learning Difficulties to ASD, increased awareness of ASD generally and in medical circles and improved diagnosis. Perhaps the most amusing answer came from whomever compiled the reports for Shetland who said:

Demand for diagnosis, therapy, respite and alternative treatments. Any increase in numbers is attributed to jungle/grape vine, internet, parent support group and media.

Maybe David Kirby should pack the second revised draft of Evidence of Harm into his Sporran and come and find some decent research. That would make a nice change for him.

The Answer To Autism?

4 Oct

Yesterday, the Herald published a story about how they may have ‘the answer to autism’.

It turned out that it was a story about an upcoming conference in October run by the charmingly named Action Against Autism. My US readers may be very familiar with the speaker list.

The Herald article came out with some choice quotes such as:

…in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it but the facts do appear to substantiate it.

and

According to McCandless, one of autism’s primary triggers is a direct injury to the gastrointestinal system through over-vaccination and use of antibiotics

So I decided to write them an email detailing the _actual_ facts as oppose to the _respun_ facts:

Sir,

I would like to respond to your very unbalanced and misrepresentative article regarding autism, its status as an ‘epidemic’ and the likely causes and treatments of autism.

In your article you state that:

In other countries, most notably the US, the situation is even worse, so much worse, in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it
but the facts do appear to substantiate it.

You are actually in error. The facts (by which I mean scientific, peer reviewed evidence) indicate there is *no* epidemic of autism. There is an increase in numbers but that does not indicate an increase in prevalence. A recent article in New Scientist provided a good overview of the situation including the results of the latest research into the subject but I wish to quote from it below:

One team, however, is ahead of the game. Back in July 1998, Fombonne and Suniti Chakrabarti of the Child Development Centre in Stafford, UK, started screening every child born in a four-year window (1992 to 1995) who lived in a defined area of Staffordshire, 15,500 children in total. As a result, they established baseline figures for autistic spectrum disorders – about 62 per 10,000. Then they did it again, in exactly the same place and exactly the same way, this time with all the children born between 1996 and 1998. In June this year, they reported that the prevalence of autism was unchanged (American Journal of Psychiatry, vol 162, page 1133). “This study suggests that epidemic concerns are unfounded,” concludes Fombonne.

The use of the term ‘epidemic’ to describe autism is an insulting and derogatory term to apply to a whole subsection of people. It has connotations way beyond its literal meaning and can only add to the misinformation and hysteria which already surrounds autism.

Some other speakers at the AAA conference include Boyd Haley, who once infamously referred to autistic children as suffering from ‘mad child disease’. On the back of the subsequent uproar, Haley claimed he had invented an acronym based on his belief that autism is in fact mercury poisoning. He said he was referring to *M*ercury *A*quired *D*isease when saying ‘mad’. Obviously a poor linguist, he failed to spot that when lengthened out, his phrase would read ‘mercury acquired disease child disease’.

The hidden agenda of AAA (and the vast majority of the invited speakers) is that autism is in fact mercury poisoning, received in the form of thiomersal in vaccines. They say that the thiomersal (used as a preservative in vaccines a few years ago) has somehow caused autism. They say this has given rise to an epidemic of autism. The science in no way whatsoever supports their position and in fact refutes it. No science has been done that indicates a causative link between thiomersal and autism and these ‘scientists’ inhabit the same murky world of quackery as Andrew Wakefield of recent MMR scandal infamy.

The reason I say this is that not only do these ‘scientists’ believe (in the total absence of proof) that autism is mercury poisoning, they also believe that a very controversial type of treatment – chelation (pronounced ‘key-lay-shun’) can ‘cure’ or ‘reverse’ autism. Again, they have no evidence for this belief – no science has been done on its efficacy. In fact, one ‘renowned’ chelationist Dr Rashid Buttar peddles a trans dermal form of chelation that come in the form of a skin cream. This cream has also never been tested for safety or efficacy. It is in fact highly unlikely to ever pass through the skin. Dr Buttar charge $800 for a consultation. He also believes he can cure cancer and reverse old age.

Recently, another form of chelation called EDTA-IV chelation killed a 5 year old autistic boy in the US . This procedure was carried out despite there being no link between autism and thiomersal, no real similarity between the symptoms of autism and the symptoms of mercury poisoning and no research conducted on either the safety of, not the efficacy of, chelation as a treatment for autism. One of the speakers at the AAA conference, Anju Usman, was the close colleague of Roy Kerry, the Doctor who administered th dose of EDTA to the five year old boy above.

On the other hand, research into valid, respectful and non-dangerous interventions has dwindled in this country. The figure for monies related to autism dedicated to this research is 8%. From that article:

UK research into the causes and treatment of autism is seriously behind that of other countries, a report says. It says the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder.

What I fear is two-fold. By pandering to this continuing association with vaccines, autism research risks getting sucked into a biomedical dead end. Its tempting to follow that path (and as Dad to an autistic child I did indeed follow that path for awhile) but it offers no answers and as evidenced above, that path can lead to some very nasty places. People lie in wait like predators, ready to take advantage of your ignorance and charge you to the hilt for the pleasure. I urge all parents to question the motives of anyone linked to the non-scientific treatment of autism. There is often a heavy financial price to pay and sometimes a heart breaking non-financial one.

My other fear is that by allowing people like this to discard our autistic children as the results of an ‘epidemic’ or a ‘living hell’
or to describe our kids as ‘lost’ (my daughter is right where I left her!) we create even more negativity about a condition that already carries a heavy load of stigmatising misinformation. What I would hope for my daughter is that she remains free from people attempting to ‘cure’ her and that we as a society can progress to a point where people like my daughter can be free to be who they are, receive treatment for the debilitating accompanying conditions that sometimes come with autism and that autism can be seen as a difference more than a disability.

Thanks for your time.

###ends###

They mailed me back thanking me for my email and asking for my postal address so they could consider it for publication so I’m hopeful someone somewhere will read it and think twice.

Pinks Disease And Autism

27 Sep

NoMercury, the website of Dr Alan and Lujene Clark RN is a website dedicated to proving the idea that mercury causes autism. Alan Clark writes a loooooonngg open letter about it – an amassing of the evidence one assumes – in a page amusingly entitled ‘the science’.

Lots of people (including me) have debunked a lot of whats on that page and what the Clark’s believe and more will do so in the future no doubt. What I’ve been meaning to tackle for some time is their attempt to provide historical medical data to back up their claims that mercury causes autism.

In order to do this, they make use of a form of mercury poisoning called ‘Pinks disease’ which is a phenomenon rarely seen these days but which went through a few periods of high prominence, particularly in the early 20th century and again in the mid 50’s in the UK.

The Clarke’s make use of Pinks disease in order to try and explain why thiomersal only causes autism in such a very low set of kids:

Why does mercury toxicity at levels found in vaccines seem to only affect a subgroup of children, predominantly males? History provides the answer. The same target subgroup was noted in the early 20th Century during the epidemic of Pink’s Disease (Acrodynia) that was determined to be caused by mercury in teething powders given to children. About 1 in 500 children were afflicted, and some died as a result of this toxic insult.

Firstly, lets note that despite Clark’s claims above neither he nor Pinks disease reveal why autism affects mainly boys. There are no valid scientific theories that account for that fact. And lets be clear – in order for thiomersal to be taken seriously as a causative of autism, there damn well needs be. The absence of such data is (just like the evidence against the so called autism epidemic) another major unraveling of the conspiracy-theorists shroud of mystery.

Clarke then goes on to quote Dr. Thomas Clarkson, who, in his ‘The three modern faces of Mercury’ said:

It is interesting that not a single case of Acrodynia has been reported from exposure to vaccines despite the propensity of thimerosal to produce this syndrome when given in sufficient amounts.

Which is a great point. Clarke, of course, takes issue with it:

That remark is quite interesting in the face of many parental reports of just such a rash occurring in their child after a bolus of Thimerosal-laden vaccines in the 1990’s.

He then goes onto ‘prove’ his point by linking to a PDF on his own site that not only details a case study of Pinks disease but includes pictures so we can judge how Pinks disease makes kids hands and feet pink.

Intriguingly, I came across a differing version of these exact same images. There were two main differences between this report and the Clark’s – firstly, the report I found is hosted on a medical science database which tends to lend it a bit more credence. And the second difference? Well go see for yourself. Is it just me or has the level of ‘pinkness’ seemingly and magically drained away from the report on the Clarks website? Far be it from me to accuse anyone in the Clarke household of being a dab hand with Photoshop but if I was told I was going to look at something called Pinks disease I’d expect something more along the lines of whats on the Science site than whats on the Clarks site. You, Dear Reader, can make up your own mind.

Clarke then goes on to say:

Acrodynia is probably the most widely recognized form of mercury poisoning. Its symptoms have been documented as early as 1931 by Bancroft, Grant, Tanner, et al (Journal Lancet 71:56, 1931) and studied more extensively in the 1950’s by Warkany and Hubbard. In fact, a statement in some of their earlier work *is almost eerily predictive of the symptoms we are seeing today* since the iatrogenic exposure to mercury was increased significantly by the rapidly expanded immunization schedule beginning around the early 1990’s. Have their words from 1953 come back to haunt the medical community because mercury was left in vaccines?

Fascinating stuff. Except Clarke glosses over the pathology of Pinks disease. I mean, from what Clarke says about Pinks disease above you’d expect the pathology of Pinks and autism to be very similar.

The child becomes listless, no longer interested in play, restless and irritable. Generalised inconsistent rashes, which are protean, recur from time to time. Early, the tips of the fingers, toes, and nose acquire a pinkish colour and later the hands and feet become a dusky pink, with patchy areas of ischemia and cyanotic congestion. The colouring shades off at the wrists and ankles. These changes in the extremities are the most distinctive features of the syndrome and are responsible for the term pink disease. Frequently the cheeks and the tip of the nose acquire a scarlet colour.

As the disease becomes established, the sweat glands are enormously dilated and enlarged and perspiration is profuse. Secondary infection may lead to a severe pyoderma (a pus-like skin disease). There is desquamation of the soles and palms, which, though usually superficial, may be severe and recur during the course of the disease. The fingers and toes appear oedematous; the swelling is due to hyperplasia and hyperkeratosis of the skin. An outstanding symptom is constant pruritus with excruciating pain in the hands and feet. Children will rub their hands together for hours, and older children will complain of a severe burning sensation.

The nails become dark and frequently drop off. Occasionally, gangrene of the toes and fingers develop and trophic ulcers may result from the constant rubbing of the hands and feet. The hair tends to fall out and is often pulled out by the child.

There is photophobia without evidence of local inflammation of the eyes. The children shield their eyes or bury their faces in their pillows. The lax ligaments and hypotonia permit the children to assume unusual positions. In extreme cases the teeth may be lost; necrosis of the jaw bones frequently follows. Initially, the gums appear normal except for a slightly deeper red colour, later they become inflamed and swollen. Salivation then becomes pronounced, and the saliva often flows from the mouth in a constant stream. Anorexia is prominent, but because of the excessive perspiration large quantities of water are consumed. There may be diarrhoea and prolapse of the rectum is a frequent complication. The blood pressure and pulse rate may be increased significantly. Fever is usually not present unless there is some complication such as urinary tract infection or bronchopneumonia. Neurological symptoms are an important part of the syndrome and include neuritis, mental apathy, and irritability.

Early in the disease the tendon reflexes may be normal or increased, but later they disappear. There is not a true motor paralysis, but because of the soft, flabby musculature the child has no desire to walk and is hypotonic, listless and hypomotile. The severe pain prevents normal sleep. There is no time when a child with acrodynia appears happy or comfortable; the child does not play or smile, but appears dejected and melancholic, a picture of abject misery.

Neonatology.

Does that sound anything – anything at all – like autism or autistic people you know? No, me neither. Clarke follows up with what one assumes is his knock out blow – ‘Autism – a Novel Form of mercury Poisoning’. A study that wasn’t good enough to make it into a proper science journal. One of the conclusions in that study and which Clarke points proudly to is:

Due to the extensive parallels between autism and HgP [mercury poisoning], the likelihood of a causal relationship is great.

Er, yeah. Extensive parallels. Right. It seems that the medical science of the time (and now) says that Pinks disease has a causal relationship with mercury. It also seems very obvious to me that Pinks disease shares no commonality with autism whatsoever. It also seems clear to me that Clark uses Pinks disease in a vague manner with nothing substantive to back up his assertion at all. We’re back to square one: Yes, mercury is bad – no there’s no evidence it causes autism.

Blogoposium I: Web 2.0

26 Sep

Ken over at Technosight will be hosting the inaug, inagru first ever Blogoposium this Wednesday and will be discussing a subject I blogged about fairly recently: the phenomenon of Web 2.0. Ken mailed me saying:

I think you could really add something to the conversation, especially because you are not necessarily drinking the ‘cool-aid’ of Web 2.0 (which is one question I am asking people to address).

Well, I’m as open to flattery and delusions of being a maverick as anyone else so I thought – ‘hey, I’m a designer (big ego) _and_ I’m a blogger (also big ego) therefore I must really _really_ believe what I say is worth listening to – so, what the hell.’

So I mailed Ken back saying I’d love to be involved. The idea reminds me a little bit of the various blog carnivals that my good friend Orac runs/hosts/gets involved in and I think its an attempt to utilise the power of blogs in a coordinated and semantic manner – which is always a good thing.

Ken is looking for lots of involvement on this and as I think its a great idea (and lets face it, the design/development blogosphere talks about these things in a meme-like fashion anyway so it may as well be formalised and organised) I also think it would be a good idea for lots of people to get involved.

Ken has a few incentives to offer to the first 30 people to trackback on the day itself (Wed 28th Sept – thats this Wed fact fans):

The first 30 trackbacks will receive a complimentary copy of the advanced uncorrected proof of Seth Godin’s The Big Moo (the book doesn’t come out till October).

which is jolly decent of him.

Now, a lot of the design/dev bloggers _I_ know are as egotistical and opinionated as I am – so ladies and gentlemen – have at it.

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