Archive | 2005

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.

MMR, David & Goliath

21 Sep

I came across an article today by F. Edward Yazbak, MD, FAAP. He’s part of the loose coalition of people who support the MMR/Thiomersal/autism association. The article was mainly about how Thiomersal in Europe is displayed with a skull and crossbones. I may tackle that another time but for now I want to take issue with the following introduction:

In the United Kingdom, the issue of MMR remains in the forefront with a David and Goliath scenario unfolding for the last seven years: On one side, the mighty Government, the Prime-Minister personally, the Health authorities, the Press –some of it very ugly- and large useless epidemiological studies and on the other side, Andrew Wakefield with his study of 12 children and a small group of faithful devoted and informed parents.

There is enough scientific evidence to show that both the MMR vaccine and Thimerosal in other vaccines precipitate autistic regression in genetically-predisposed children, not withstanding the opinions of biased “experts,” a misleading IOM special committee report and obviously the CDC.

Red Flags Weekly.

He also links to a more indepth article apparently but I can’t access it from the link provided.

Lets just tackle these statements as someone who _is_ British and lives in the UK.

The MMR issue is not in the forefront of anything. It remains sporadically in the news due to the efforts of Times journalist Brian Deer. Andrew Wakefield by comparison has fled the country and refuses to be interviewed by Deer. There is indeed a ‘small group’ of press and parents but whilst they are faithful and devoted, they are far from informed.

The facts of the matter are that Andrew Wakefield says he has found an autism related bowel disease in some autistic kids. He may well have, gastric issues are a known comorbidity in some people. There is however, _no link to MMR causing this condition_. No science exists that shows a causative link.

And far from there being just ‘large useless epidemiological studies’ to refute Wakefields claims there are actual ‘hard science’ studies that refute his work.

Firstly is the evidence of his _own lab_.

Even as Andrew Wakefield launched his attack on MMR in 1998, at a press conference and in a video, coinciding with a Lancet paper, he knew that his own laboratory had tested his theory: that the ultimate culprit for the children’s autism was measles virus in the vaccine. Royal Free researcher Nick Chadwick, carrying out sophisticated molecular analysis of samples from the children, using methods agreed by Wakefield, found no trace of measles virus.

Brian Deer.

And lately a new study (which will feature in a BBC documentary) shows that:

Scientists at Guy’s Hospital, in London, have been studying a large group of 100 autistic children. They examined their blood samples, looking for traces of the measles virus in their blood and in that of another group of non-autistic children. The samples were analysed in some of Britain’s leading laboratories, using the most sensitive methods available. The scientists found that 99 per cent of the samples did not contain any trace of the measles virus. Crucially, there was no difference between the autistic and non-autistic children

Awares.

Its also worth noting that *all* of the co-authors of the original Lancet paper have rescinded their position leaving Wakefield standing alone. Next year he will face misconduct charges in the UK from the GMC.

Its further worth noting that at the time he began to criticise the MMR and implicate it in autism causation, Wakefield also claimed he had found another, safer way to vaccinate kids which he duly filed a Patent application for. He later denied this on a website and through his solicitors, however Brain Deer unearthed Wakefield’s Patent application for all to see.

F. Edward Yazbak talks of bias. We have a saying in the UK Sir – ‘people who live in glass houses shouldn’t throw stones’.

Unobtrusive, Accessible Collapsible Content

19 Sep

I’m stretching my Javascript legs a bit at the moment and am beginning to really enjoy the freedom that decent DOM support across the major browsers offers.

I recently had occasion to create an ‘events’ page which will be inserted into an upcoming project. As there will be a lot of events being added to this page I wanted to create it as a collapsible unordered list. But as a Javascript ‘workout’ for myself I resolved that I would only use Javascript that was unobtrusive, degraded gracefully and was accessible as possible. that meant no onclick attributes, no ‘#’ in href attributes and code that was valid and clean.

Here’s the markup:

<h1>Events Listing</h1>	
	
<p>Browse the listing for upcoming events</p>
			
<ul class="open">
	
<li>
		
<h2>4th Annual &ndash; Summit</h2>
			
<ul id="ul_item1" class="opensub">
<li id="item1_1">
<h3>22nd September 2005, Main Campus</h3>
<p>blah blah blah....</p>
</li>
</ul>
		
</li>
					
<li>
		
<h2>Managing the Market Or Some Such Bollocks</h2>
			
<ul id="ul_item2" class="opensub">
<li id="item2_1">
<h3>24th November 2005. The Conference Centre</h3>		
<p>etc etc etc...</p>
</li>
</ul>					                             
		
</li>
	
</ul>

Fairly self-explanatory markup. The sublists hold the content but users with Javascript and CSS enabled will get a clickable link (not shown in this markup – patience my precious…) whilst those without will just get this.

I then wrote three fairly simple javascript codeblocks (two functions and one class). Function number one I called ‘toggle’ and thats what it does. When a specific link is clicked, it either shows or hides an element. Like so:

function toggle(id){
var ul = "ul_" + id;
var img = "img_" + id;
var ulElement = document.getElementById(ul);
var imgElement = document.getElementById(img);
if (ulElement){
 if (ulElement.className == "closed"){
  ulElement.className = "opensub";
  imgElement.src = "opened.gif";
  }else{
  ulElement.className = "closed";
  imgElement.src = "closed.gif";
  }
 }
}

So, the function is passed a value referenced as ‘id’ (more on that later). It then appends that passed value onto the end of two elements and applies a class of ‘closed’ or ‘opensub’ as appropriate.

What I wanted to do next was ensure that if the user didn’t have Javascript then the ‘opensub’ CSS class was applied (as we need to present the whole page to them) and if they do have Javascript then we need to apply the ‘closed’ class to the element.

I also wanted to ensure that if the user did have Javascript then he existing markup above was annotated with markup that will make each heading a clickable link and provide a little feedback in the form of an image. Hence:

function initState () {
var lists = document.getElementsByTagName("ul");
for (var j=0; j<lists.length; j++) {
 if(lists[j].className == "opensub") {
  lists[j].className = "closed";
 }
}	
var subHeads = document.getElementsByTagName("h2");
for (var k=0; k<subHeads.length; k++) {
 var arrImg = document.createElement("img");
 arrImg.src="closed.gif";
 arrImg.id="img_item" + [k+1];
 subHeads[k].appendChild(arrImg);
 var holdText = subHeads[k].firstChild.data;
 subHeads[k].firstChild.data = "";
 var placeAnchor = document.createElement("a");
 placeAnchor.href = "test.htm";
 placeAnchor.id = "item" + [k+1];
 placeAnchor.className = "ddown";
 placeAnchor.appendChild(document.createTextNode(holdText));
 subHeads[k].appendChild(placeAnchor);
 }
}

This function has two main parts. The first part (knowing that the user does have javascript installed – we'll see how later) turns all instances of 'opensub' (which displays to the page by default) to 'closed' – meaning a user with Javascript gets the 'rolled up' items. The second part hunts for all h2 elements and creates the markup for both the image and the clickable text in the heading element. These two lines:

var holdText = subHeads[k].firstChild.data;
subHeads[k].firstChild.data = "";

firstly, get the value of the text in the

element, stores it for later use and then gets rid of it – if it didn’t we’d have both the existing text plus the clickable text. Which would be crap.

Once all this is coded we need a way to fire this whole process. I did this in the class below:

window.onload = function() {
  if (!document.getElementsByTagName) return false;
  initState();
  var lnks = document.getElementsByTagName("a");
  for (var i=0; i<lnks.length; i++) {
    if(lnks[i].className == "ddown"){
      lnks[i].onclick = function() {
        toggle(this.getAttribute("id"));
        return false;
      }
    }
  }
}

The crucial line is line 2:

if (!document.getElementsByTagName) return false;

This says that if the browser doesn't support the prerequisite method then the whole things off, the extra markup doesn't get created and everything appears on the page all at once.

This function also passes the 'id' value to the 'toggle' function by getting the id attribute value of the link thats been clicked.

To complete this whole thing we lastly need to create the CSS that will do the actual showing and hiding:

h2 a {
display: inline;
}

.open {
display: block;
}

.closed {
display: none;
}

ul li,
ul {
list-style-type: none;
padding: 0;
margin: 0;
}

.open li img {
vertical-align: middle;
}

And thats that – job done. See it in action or download the whole thing here.

Amended

I thought it might be nice to see if we could close every other entry when one entry is clicked – this means only one entry is ever displayed which might be preferable for some. All this needs is some minor tweaks to the Javascript.

For the function initState() I added the line:

arrImg.className="ddImg";

Immediately below this one:

arrImg.id="img_item" + [k+1];

So I have a class to hook myself into in the next function – toggle(id).

I’ve added two new if statements here that firstly close up all the ul elements with the class name ‘opensub’ and then closed all the img elements with the (see above) class name ‘ddImg’. What’ll happen later in this function is that the selected id will be passed in exactly the same manner as it was before thus opening the correct list and image. Here’s the annotated code for toggle(id)

var allLists = document.getElementsByTagName("ul");
for (var x=0; x<allLists.length; x++) {
if(allLists[x].className == "opensub") {
 allLists[x].className = "closed";
 }
}
var allListImg = document.getElementsByTagName("img");
 for (var y=0; y<allListImg.length; y++) {
 if(allListImg[y].className == "ddImg") {
  allListImg[y].src = "closed.gif";
 }
}

I put this code right at the very start of the function.

And thats that. Whenever you click on an entry, all other open entries will shut automatically.

The example’s here and the download is here.

Amendement No II

And its only now of course that I remember that screenreader users invariably _do_ have Javascript turned on and that display: none hides things from the screenreader.

One frantic search later, I find the answer in the Off-Left technique. So the code for the closed class now reads:

.closed {
 position: absolute;
 left: -999px;
 width: 990px;
}

Lets Cut Microsoft Some Slack Eh?

19 Sep

I don’t know about anyone else but I’m getting really really bored with the recent upsurge in MS bashing. Its really prevalent in the web design industry as a lot of designers are Mac users.

It comes in many flavours. First their is the odd blog post with a reasonable proposition that turns into an MS (oops, sorry ‘M$’) bashing fest. Or there’s the full on blog attack.

MS (damn, did it again, I need to write ‘M$’ for full ‘kewl’ points right?) have just released their Developer toolbar for IE and yup, you can bet that announcement got its fair share of idiocy too.

Most of the complaints centre around how uninovatory Microsoft are. Well duh. Thats not their strength. You know thats not their strength, they’ve never traded seriously on that being their strength. Stop moaning about it. However, what they _are_ good at is responding to demand. They watched how Konfabulator panned out then launched Gadgets. They watched how Tiger panned out and they’ll soon launch Vista. They watched how Firefox panned out and saw how good some of the extensions were/are and did their own…..um, whats wrong with that?

Here’s one of the things that rankles me: if they _didn’t_ do these things then these same people would be moaning about how Microsoft are sticking with the same old crap that nobody likes. There truly are times when Microsoft cannot win. They appreciate how good something is and implement a similar system/product and get accused of being uninnovative. Stick with what they’ve got and they get accused of not being able to move forward.

Here’s another thing that rankles me: without the Windows PC, the vast majority of those doing the moaning would not be in the line of work they are currently in. Corporate websites require visitors. Next time you wonder who pays your wages (or who funds your clients ability to finance design work) take a look at the OS stats for your clients site visitors.

Windows made the PC easy for the mass market to use and to get on the web with. Whilst Mac dither about for months designing a _mouse_ , the average price of an internet ready Windows PC is still falling. Whilst precocious designers complain about how Gadgets are really Widgets or what ever, Windows users continue to ramp up web sales.

This recent spate of Windows bashing is totally misplaced. So what if Vista uses a ‘plastic’ style interface? So what if Desktop X wasn’t the first to support widgets? So what if the new IE toolbar resembles the Firefox extension? Are any of these things holding back innovation on the web?

Why don’t you redirect some of that moaning into areas that Microsoft really _do_ need a good kicking about? Like full CSS2.1 support. Or why it took nearly half a decade to get an upgrade to their flagship web product?

Oh, and if you really want to know why PC’s (both Win and *nix) sell better than Macs, try changing the memory on a Mac Mini.

A More Accurate Neurodiversity FAQ

17 Sep

*Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.*

*1) Neurodiversity proponents are anti-parent.*

False. I’m a parent. I’m parent to 3 kids of whom one is NT, one is autistic and one is too young to tell. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen is a parent. Camille is a parent. Anne is a parent.

*2) AutAdvo makes up the entire population of Neurodiversity proponents.*

False. There are literally hundreds of websites with thousands of participating autistics of all ‘levels’. The vast majority advocate acceptance. There are also a very large number of NT parents who advocate Neurodiversity. The desire to cure autism is heavily weighted towards North America. Look among your own group for evidence of that.

*3) Neurodiversity proponents say we should not treat our kids.*

False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic.

Don’t take my word for it. Go ask the Doctor who diagnosed your child.

We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your childs right to have gastric issues.

You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not.

_Please note: It is worth reading Amanda’s thoughts on autism/comorbidities as they differ slightly from what I’ve written here. My own understanding of how this process pans out is altering as a result of this exchange with Amanda but I write here what is my most complete belief as of this minute._

*4) Neurodiversity proponents who are autistic are different than my child.*

True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof.

*5) Neurodiversity proponents are full of hate and/or racism.*

False. Just like you, we get angry and say stupid things. What Jerry Newport said was not on. Simple as that. It was, in my opinion, unacceptable. I am though totally bewildered how the words of one man apparently speak for everyone else. I’ve seen the posts from the other members of AutAdvo following Jerry Newport’s post. People were angry and disappointed with him. Not one person defended his position.

I was bemused to read posts by newer members of the EoH list (and one founding member) that castigated us for hate speech. Here’s an excerpt from an email I was sent earlier in the year from someone who hid their identity. This person (who had a Bellsouth IP address) had an in-depth knowledge of Evidence of Harm and although they never said so, that they came from EoH is beyond doubt – I received this email to my Yahoo spam account immediately after making a few posts myself on EoH.

Your retard daughter should just be fucking put down – shes no autist. Little bitch.

And racism? A member of Generation Rescue (or so they claimed) told me to:

…sit next to the nearest Arab with a backpack.

Alluding, of course, to the recent London suicide bombings, this person makes racist generalisations about Arabs (one of the ironies being that Rashid Buttar is himself of Arabic descent I understand) as well as wishing death on me.

Generation Rescue Bigwig John Best Jr has said that all parents of autistics who don’t chelate their kids are child abusers. Lujene Clarke of NoMercury told me that I was mentally ill because I said I had autistic relatives. My EoH debut was preceded by EoH list members referring to me as an idiot. I’ve been told I’m in the pay of Pharma companies, that I’m stupid, that I’ll go to Hell, that I’m in denial. My autistic friends have been told they are sociopath, that they have personality disorders, that they aren’t really autistic.

All of you who who rightly condemned Jerry Newport’s words – I urge you to denounce these examples of bigotry and hate too.

*6) Neurodiversity proponents say we don’t love our kids or want whats best for them.*

False. I have no doubt that you all love your kids just as much as I love mine. I’ve not seen any neurodiversity proponent claim you hate your kids.

What we say is that we think your love for your kids has blinded you to the reality that autism itself is not a problem to overcome but a reality to share with your child. We think that in your honest desire to do the best for your child you are desperate to treat the wrong thing. We also feel that some of the things you use to treat your kids are dangerous. Chelation for example. I’m on record as saying that its no-ones place to tell others what they can and cannot do to treat their kids but by that same token, I feel obliged to point the very real dangers to both your children’s health, your own bank balance and the very future of autism treatment research.

I believe the world should change for the good of my child. I don’t believe my child should meekly inherit the mantle of ‘second class citizen’. I see it as part of my job to fight for her right to get the help she needs and at the same time, be who she is.

There are so many better fights than this one you’re on. Better education, better care, better interventions, more rights, more respect. These are the things your child (and mine) will need as they continue to grow.

We’d like you to respect your child’s autism as something unique. We’d like you to treat your child with the medical interventions for their comorbidities that they may need to progress. We’d like you to realise that your children will grow up and if they were autistic then they still will be. We’d like you to think about the strong possibility that one day the autistic adults on AutAdvo might be your kids and another set of parents who believe something passionately will be insulting them by denigrating their worth and their neurology.

You believe thiomersal did your kids harm. You may be right. I doubt it, but you may be. What it definitely didn’t do though is cause autism. This is at the heart of what makes some of us angry in respect of this issue – treat your kids if they are mercury poisoned but please stop propagating so much negative stigma with constant references to autism being mercury poisoning.

*7) So autism is definitely not mercury poisoning?*

Definitely’s a very strong word. The consensus of opinion is that that is very unlikely to be true. In my daughters case, its definitely not true. Autism is a spectrum, its not an ‘either/or’ scenario. I think its likely that some people have a genetic predisposition for autism which may be triggered by an environmental insult and that that trigger may even be mercury in some cases but ‘trigger’ does not equal ’cause’. Even if what I believe is 100% accurate (which is doubtful, who is ever 100% accurate?) that would still mean the vast majority of autistics are autistic for reasons other than mercury.

*8) So why do neurodiversity proponents say they speak for my child?*

The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking *for*, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?