Archive | June, 2005

My Crazy June

30 Jun

What a month.

It started off really well with it being my turn to guest blog for John which brought me to a much wider audience. However it also prompted a few panic stricken emails to my hosts as it became clear that I was going to use my monthly bandwidth allowance within 6 days. Being the all round great bunch of guys they are (hi Marty, hi Khalid ;o) ) they found a way to let me keep going. They really are a great company with amazing customer support -but don’t take my word for it read the impartial reviews for yourself.

I was given some fantastic content by other people to mark the inaugural Autistic Pride Day all of which added up to a great day.

During the course of the month I got linked to from some fantastic blogs: Andy Clarke, AutismDiva, Orac, Jon Hicks, Ballastexistenz, BD4D, Alvit.de, forgetfoo, Neurodiversity, Martagnan, Euphemize, Skeptico, Bonni, Lisa McMillan and Matt amongst others.

Then of course was the big day – our Tabby was born and almost the same day I found I’d been listed on Unmatched Style, CSSVault and nv30.

All this activity took me from a sedate 1.6GB per month to approaching 17GB this month and taken my average unique visitors per day to over 2000.

So a big thank you to all who listed me, linked me or talked about me (and special thanks to John of course ;o) ) and here’s hoping I can capitalise on this extra traffic and get people talking more about the specifics of design and the rights of autistics.

Open Letter To The Accessibility Task Force

29 Jun

Colleagues,

Your joint appointment to the ATF is a visible positive indicator that the concept of web accessibility is maturing. I think all the choices for this task force are inspired and that between you you have an excellent pool of academic and practical experience.

That said I think you have a tricky task ahead of you. I note the positive steps you’ve taken in asking on your personal sites what we as designers and developers think are important steps and I’ve spoken my piece as part of this process. I also note with some concern that a basic concept is in danger of being ignored in some of the replies I’ve read (including my own).

Whilst its true that its important that CMS’s can handle content better and that screenreaders work with browsers as oppose to against them (to take two highlighted examples) I think we need to first have a task force that can put the house of accessibility in order.

I’m not talking about anything adversarial with WAI but it seems to me that the most common issues to do with the concept of accessibility revolve around what it actually *is*. This is an issue that both WAI and GAWDS have totally failed to address and yet without this basic, fundamental understanding our comprehension in this respect is being steered with a warped rudder.

Even our so called ‘guru’s’ have occasionally odd ideas about accessibility and what/who it encompasses. I read a recent comment from one of the biggest gurus in the field recently chastising someone who suggested content should be accessible as well as the code and interface design. Obviously this ‘guru’ is unaware of issues affecting those with a cognitive based disability.

Another big name claims that accessibility should only be about removing barriers and that pages scripted to take account of users real-life needs fail to grasp the ethos of accessibility.

Obviously there is substantial confusion not just about tools and technique but at a much more fundamental level. To that end I think item 1 on your agenda should be defining accessibility for web developers and all sub tasks of this item should be a clarification on who the main user base are, the software tools they may use, how we can currently level the playing field for some of these users and the steps we need to take to provide enhanced interfaces for some of these users.

We also need a redefining of the main user base. Currently and historically, the perception has been of users with a visual impairment. The majority of debate revolves around these users and to a lesser extent users with mobility issues. This situation ignores a third of those covered by the UK DDA. I’d like to see the task force question this emphasis – whats the point of a concept of accessibility that only caters to 2/3rds of its customers?

I’d also like to see a full and frank discussion of WCAG 1.0 and 2.0 and an extensive debate on their shortcomings. Its obvious that WAI aren’t going to do this and I think you guys are ideally placed to highlight these issues.

Accessibility is a noble goal that deserves better treatment than its so far received.

The power of the Web is in its universality. Access by everyone regardless of disability is an essential aspect.

Tim Berners-Lee, W3C Director and inventor of the World Wide Web

Thats the quote on the WAI home page. So far, due to uncertainty, poor defining and poor propaganda, WAI have utterly failed to convince either developers and/or business. One could argue its beyond their remit just as one could argue that what I’m propounding here is beyond *your* remit but in the absence of any constructive leadership from WAI its possibly up to WaSP and this task force to define accessibility in ways that are universally comprehendable by developers *and* business and that don’t exclude large sectors of the client base that the overall concept is supposed to empower and at the same time put pressure on WAI to do the same. I think these things are vital before we can even think of more detailed agendas touching on implementations such as CSS, software (screenreaders _or_ CMS’s) or the necessity or otherwise of validation.

Tabitha Catherine Leitch

26 Jun

Our Tabby was born at 12.26am today.

She weighed in at 8lbs and 6ozs and has a good lot of dark hair together with her Mum’s big blue eyes.

After all the false starts and sudden stops the delivery itself happened relatively quickly. Naomi started going into established labour at about 10pm and just under 2 and a half hours later, Tabby made her appearance.

Megan woke up about 2.30am and came downstairs to be introduced to her new sister. She’s pretty fascinated by the whole thing and cried when Tabby was taken up to go to bed. How long this fascination will last is another matter of course! Megan is pretty fickle!

Everyone else has either left (the Midwives) or gone to bed (Naomi, Tabby, my Mum-in-law) so its just us hardy party animals left (Megs and me) to celebrate our new 5 person family – I didn’t phone Anthony to wake him at that time – although I couldn’t resist a call to my parents.

My abject apologies for the lack of a picture – I was so wrapped up in the whole thing I forgot to take one before Tabby went to bed. I’ll post one up ASAP.

Tabitha Catherine

Letter To Dr Rashid Buttar, Chelationist

24 Jun

Dear Doctor Rashid Buttar,

I understand that you sell an autism cure called TD-DPMS (Trans Dermal DPMS). As the parent of an autistic child I’m very curious about this product and how it helps autistics.

I’m led to believe that TD-DPMS is not FDA approved and that David Kirby (author: Evidence of Harm) reports that:

one manufacturer of it told compounding pharmacists not to make up transdermal patches of the stuff because some kids had had bad reactions with rashes and even bleeding and scarring.

AutismDiva

Is this true? Is this bad reaction the reason you decided to turn to making TD-DPMS a cream instead of a patch? How does this affect the effectiveness of the product? As I’m sure you know being a Toxicologist, Chelation agents need to absorb a certain amount of the product in order to even begin to be effective. Where are the studies I can get hold of to see the rates of absorption for myself?

In fact, this brings me neatly onto a related matter. Such an important scientist as yourself must surely have peers flocking to review your work. As such an august scientist you are no doubt aware of the most basic scientific precept of subjecting your scientific work for review so that others may critically appraise your work and replicate it. I was surprised therefore to discover that a search of http://www.pubmed.gov – the site that lists all scientific articles in peer-reviewed scientific literature – and found nothing when searching for ‘Rashid Buttar’. Did you submit your thesis under a pseudonym perhaps? I’m positive this must be an oversight and that the safety and efficacy of a product that you regularly use on children has been regularly tested and re-tested by both yourself and your peers as to do otherwise is tantamount to admitting one is afraid to submit one’s work for peer review – I’m certain that can’t be the case for you! The commenter below must surely be mistaken?

To be listed in PubMed, you have to have published scientific articles in the peer-reviewed scientific literature. It’s just that simple. Apparently Dr. Buttar couldn’t be bothered to submit his work to real scientific journals. It’s hard to be taken seriously as a researcher or scientist if you aren’t published in peer-reviewed scientific journals. Certainly, I don’t take him seriously. In Buttar’s own words, he doesn’t know how much of the stuff is going in to the kid or how long it stays there.

Orac Knows (comments)

Moving on, I was heartened to read in a PDF of yours that:

In a study due to be released by the winter of 2004, conclusive data was accumulated regarding the efficacy of a specifically formulated transdermally applied combination of DMPS conjugated with a number of peptides, called TD-DMPS

drhirani.com

Although I was unable to find a copy of any report containing any data – conclusive or otherwise – and I was concerned to note that its now fully 6 months after your stated deadline (trouble with Secretary’s?), I feel sure that once this report is subjected to the rigours of scientific peer review in a scientific journal will fully vindicate the use of your TD-DPMS. I look forward particularly to seeing data on the long term effects of chelation on children and the incontrovertible proof that Chelation cures autism in all cases. Could you provide a definitive date of publication and details of which Medical Journal it will be appearing in please.

By the way, I know your cream is specifically geared towards kids as your remarks here make that clear:

Our success has been all under the age of nine, nine or under. Now since then, when I presented to Congress I told them that I didn’t think this would be effective for older children because the older children would use it, I didn’t see — they got better, they started talking, but they’re not in my book considered normal. They can read, but they’ll never do much more than flip hamburgers for a living, that type of thing.

Dr Rashid Buttar.

In fact, it was after reading this that I decided to contact you. Anyone with such an obvious empathy and deep understanding of autism and autistics is just the sort of person I’d like involved in my daughters treatment. Its also good to see how concerned you are with treating non-verbal autistics as a matter of choice. Such selfless dedication can only be lauded in this day and age and lets face it – those autistics who can talk aren’t probably such an inconvenience to their parents and possibly don’t look quite as heart-wrenching in your parents videos. Its OK – I’m fully aware of the need to be marketable and nothing pulls at the heart strings as much as a child trapped in the ‘abyss of autism’ as one person recently called it.

It was a bit puzzling though. I know of several autistic adults who were diagnosed as low functioning in childhood who later grew up and became reclassified as high functioning. How could that happen do you think? Possibly a naturally occurring ‘hot spring’ of TD-DPMS they fell into? A kind of ‘Old faithful’ of Chelation? I mean, they claim they just ‘developed’ as they grew up but that can’t be right can it? People don’t just develop with age do they? Especially kids?

I was also interested to see that you test for high levels of Mercury by using hair analysis. The reason I was interested in this is that the AMA say that:

The AMA opposes chemical analysis of the hair as a determinant of the need for medical therapy and supports informing the American public and appropriate governmental agencies of this unproven practice and its potential for health care fraud.

and that

A recent 2-year study of students exposed to fumes from metal welding found that hair analysis did not consistently reflect blood levels of 11 heavy metals.

Quackwatch.

So now I was confused. On one hand I had the AMA and their 2 year peer reviewed study and on the other I had you. Now don’t get me wrong – I’m *sure* you’re really really late close to releasing your data for scientific review but you’ll forgive me if I entertained a moment of doubt. I mean, these guys seem to really know their stuff:

Hair mercury levels are not an accurate indicator of mercury exposure. Hair testing has never been standardized to provide meaningful information.

They then go on to list a whole load of reasons why not and then say:

Thus it should be obvious that analyzing hair for mercury is a waste of time and money and cannot be used to diagnose mercury poisoning. A competent practitioner would easily know this. It is fraudulent to use hair analysis to diagnose “toxic levels” of mercury (or any other heavy metal) or to assess nutritional status (and claim someone is “deficient” and prescribe or sell them supplements).

OK, so I was getting a little annoyed now. These guys were calling you a fraud! I mean here they were with their reams and reams of scientifically validated evidence and there you were with your cream and they had the temerity to call you a fraudulant quack! The cheek of some people!

And talking of cheek, I read that:

Dr. Buttar is the Vice-Chairman of the American Board of Clinical Metal Toxicology and holds a position of Visiting Scientist at North Carolina State University

And yet when I visited the NCSU website I couldn’t find any mention of you – don’t worry though, I emailed the site and asked them to confirm your status so no doubt they’ll be rectifying this error soon. Actually, now that I think about it it was a few days ago I mailed them and I haven’t had a response yet. Hmmm. Odd.

And the American Board of Medical Specialties – whats wrong with those guys? They say:

The American Board of Medical Specialties does not recognize the American Board of Chelation Therapists, the American Board of Clinical Metal Toxicology, the American Board of Chelation Therapy, and the Board Of Medical Toxicology

Casewatch.

The way they word it – you know, making Chelationists put this paragraph on consent forms and everything – makes it look like they don’t trust you and think you’re all a bunch of quacks. Man, you must long for the days when the medical community just closed ranks against all outsiders. People had proper respect for alternative medical practitioners then I bet.

On that note, I was fascinated to read some of your other patients testimonials. The guy who says that:

He (Dr Buttar) told me that most of his patients were much worse off than I and that God had Blessed me by giving me a wake up call and that he could enable my body to heal itself! Now that is the first time I have ever heard a Doctor say he could enable my body to heal cancer.

CajunCowboy.

Impressive stuff! Is the cancer cure done with cream too? I actually telephoned NHSDirect to see if they’d heard of this treatment but I didn’t get a straight answer. Actually they sounded a bit weird. There was a lot of what sounded like giggling on the other end of the line. Not very professional is it?

I was also interested in your Anti-Aging stuff:

As an anti-aging specialist, I have read many of the popular health and longevity books. Very few have impressed me. For this reason, I probably never would have read Natural Hormonal Enhancement had my associate not insisted, after reading it himself. Admittedly, I picked-up the book with a negative predisposition, assuming it would be more of the same. I couldn’t
have been more wrong in that assumption. Natural Hormonal Enhancement is very well-written and well-researched and it contains information that even many of my peers don’t understand or don’t recognize. I highly recommend this book.

Dr Rashid Buttar

The book in question being described on that site as:

Finally a Rational Approach to Health and Fitness! The Revolutionary Breakthrough that Renders Conventional Exercise and Diet Programs Obsolete! Harness the Most Powerful Biological Force in the Universe – Your Own Hormones – to Reshape Your Body and Turn Back the Hands of Time on Aging!

Blimey! You’re one busy guy! Cures for autism, cancer and even old age! Now, I know many people would find this suspicious but not me. Anything that says they can ‘reshape my body’ without exercise or diet gets my vote! Can I still drink beer?

In closing then Dr Buttar, I’d really appreciate answers to the questions I’ve posed you here, particularly on the effectiveness of TD-DPMS. I have a fairly large website that gets around 1300 unique visitors a day (that’s a few hundred thousand hits) and I’ve posted a copy of this email up so all my visitors can read it – I’ll be happy to post any response you can give me up there too. I know lots and lots of people who are asking questions about you.

In closing, my apologies for leaving the HTML in place in this email – I couldn’t be bothered to do my job properly. I’m sure you know what I mean. Look forward to hearing from you very very soon.

Using MagpieRSS To Create An AJAX RSS Reader

23 Jun

When I recently redesigned this site, one of things that I got asked about the most was my Flash RSS parser. I built it in an attempt to try and ‘reedem’ Flash a little as it occassionaly gets misused in terrible ways and I thought it would be nice to see some practical, useful Flash applications.

However, its very limited. I can only parse RSS 2 feeds which excludes Atom users totally and seeing as a lot of my favourite authors publish in Atom I needed a way to parse this data too. I could’ve adjusted the RSS parsing engine that Flash used to accomodate Atom feeds but then I realised I was making life much more difficult than it needed to be. It seemed to me that switching to MagpieRSS which already accomodates all these feeds would be a much easier proposition. But then, the reason I wanted to use Flash would be lost – and if I used MagpieRSS then I’d need to refresh the page every time a new feed was selected.

Obviously you can see where I’m going with this; the next stage in my thinking was ‘is it possible for me to adjust MagpieRSS to serve its results via AJAX?’.

I didn’t know. Mainly as I’ve never used MagpieRSS before and neither have I written anything using the AJAX methodology before but I thought it might be interesting to find out and (as always, the best thing) teach me something new. So, the first step was to learn about how AJAX worked. As I understand it, AJAX can only be triggered through variables sent from form elements i.e. you can’t send data via a querystring appended onto a URL. This would mean some minor hackery on my part.

So, my AJAX application would entail a few distinct sections. First would be the links that a user would click to select a feed. This would then send the value of the name/value pair appended to these links to a hidden form field and hence make this value available to the AJAX toolset.

Next we turn our attention to our Javascript and setting up the XMLHTTP objects:

Next, the field value is turned back into a query string and appended to a URI that is sent to the behind-the-scenes MagpieRSS script. The MagpieRSS script then does its thing and our AJAX script returns the results back to our page and displays them in a div.

This is really a no-brainer. Because all the hard work is done by the MagpieRSS script it makes the job much easier. All I really had to do was fit it into the traditional AJAX framework. You can see the results here along with all the bits I couldn’t fix to make the page validate. Maybe you’ll have some ideas on how to do these things or maybe you can re-write this whole thing much better. Either way, I’d like to hear about it.

Its not live on my site yet as I haven’t found time to style it to my satisfaction but I can think of ways this will benefit the websites I work on as well as my personal sites.

I Am A Child Abuser

22 Jun

Some of the comments coming from Generation Rescue’s ‘Rescue Angels’ are getting scarier and scarier. This was posted to a Parents.com thread:

The problem is that doctors keep telling people that autism is not caused by mercury to cover their asses. They screwed up by giving our kids way too much mercury. Those of us who know this don’t like seeing unknowing parents allowing their kids to rot in the abyss of autism. Wake up and smell the coffee is approprite. 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. There was no autism until Eli Lilly started putting mercury in vaccines. Aside from fragile X which some say is not really autism, it is all caused by mercury. 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.

Parents.com

Now aside from the factual errors, isn’t that the most frighteningly, almost fascist, shivers-down-your-spine-hair-stand-on-end-uh-oh-here-come-the-fundie-whacko’s genuinely disturbing thing you’ve read in awhile?

This is a self-styled ‘Rescue Angel’ of Generation Rescue.

A Person’s Medical History Is Their Own

22 Jun

People who support the idea that autism is mercury poisoning get to a certain point in the debate (i.e. when they feel themselves to have no recourse to logical debate any more) they resort to asking you:

have you had your daughter’s metals levels tested? And NO…I am not asking for your daughter’s medical records. It’s a fair question.

They do this mainly as they are unable to debate on an intellectual level about the issue at hand but they also believe this to be an acceptable request.

In my opinion it is totally unreasonable and entirely inappropriate to ask someone to discuss any aspect of their child’s medical history unless they feel comfortable discussing it. Especially over the Internet with people you never met before and who you don’t trust the motives of anyway.

There’s a few reasons I feel this inappropriateate. Firstly, its nobody’s goddamn business but my daughters. How would she feel in 20 years time to stumble across this blog Googles cache and find me blithely discussing her medical history with total strangers? I know how I’d feel about it if it was me – I’d feel that my parents had crossed a line between whats acceptable and whats not.

Secondly, this blog is basically an online extension of my house. Would you feel OK about me being invited into your house and then questioning you about matters that are nothing to do with you? I’ll bet you wouldn’t. I’d bet you would tell me to mind my own business and to stop asking such highly personal questions.

Thirdly is the issue of legitimising the argument of innuendo. Every time I read some neo-biblical testimony from some set of parents about how after they started using Chelation the mercury was ‘pouring out of our kids body’ I think mainly of how utterly irrelevant stories like this are – true or not they are not empirical research and thus prove nothing whatsoever. This is why science tends to eschew circumstantial evidencence like this – it is representative only of that particular individual and as such, without proper scientific investigation into _all_ the variables that came into play in that situation its meaningless as decent evidence.

So to my way of thinking if I start discussing what my daughter has or hasn’t had and claiming it as incontrovertibleble proof of my opinion I’m doing the exact same thing. The *only* way I’d let my daughters medical history be used like this was if it formed part of a large study run by a large, well respected medical institution, headed up by a well respected scientist and we were assured of complete anonymity.

24 Hours Later

20 Jun

Two things:

First: NTL – Bastards!! I’ve been offline for nearly 24 hours now and I really genuinely felt like my right arm had been cut-off. I felt horribly out of touch. All because of one stupid thunderstorm and no redundant exchange filtering.

Second: Things are finally happening. Had a visit from the Midwives today (Naomi not me you understand) and apparently the Cervix is 90% effaced and she’s getting on for 4cm dilated.

Yeah, I’m not too sure what it means either but its a positive step and means birth type things are definitely underway.

Autism And Mercury – Defining the Battle Ground

19 Jun

Autism is Mercury poisoning because:

The symptoms match so closely. Well, thats what the regular claim of the ‘no mercury’ crowd is. So lets see. Mercurysafety.co.uk lists the clinical symptoms of Mercury poisoning as:

Low Dose Exposure

  • Erethism (nervousness, irritability, mood instability, blushing)
  • Tremor
  • Personality change
  • Suicidal tendency
  • Paraesthesia
  • Impaired hearing
  • Speech disorders
  • Visual disturbance
  • Abnormal reflexes
  • Disturbed gait
  • Gingivitis (inflammation of the gums)
  • Impaired nerve conduction
  • Renal damage
  • Adverse outcome of pregnancy
  • Infertility
  • Pneumonitis (lung disease)
  • Glioblastoma (brain cancer)
  • Immune system dysfunction

High Dose Exposure

  • Gastroenteritis (stomach upset)
  • Mouth pain
  • Abdominal pain
  • Vomiting
  • Excessive salivation
  • Anuria (urine production stops)
  • Uraemia (urine products appearing in the blood)
  • Nephritis (kidney disease leading to kidney failure)
  • Anorexia (lack of appetite)
  • Ataxia (difficulty in moving)

Now I have to say immediately that this sounds nothing like the autistics (mainly kids) that I’ve met, including my daughter. There may be a case for arguing ‘speech disorder’ and/or ‘visual disturbance’ but even then you’d be stretching it. By contrast lets have a look at the diagnostic criteria for ASD.

A. Abnormal or impaired development is evident before the age of 3 years in at least one of the following areas:

(1) receptive or expressive language as used in social communication;

(2) the development of selective social attachments or of reciprocal social interaction;

(3) functional or symbolic play.

B. A total of at least six symptoms/signs from (1), (2), and (3) below must be present, with at least two from (1) and at

least one from each of (2) and (3):

(1) Qualitative abnormalities in reciprocal social interaction are manifest in at least two of the following areas:

(a) failure adequately to use eye-to-eye gaze, facial expression, body posture, and gesture to regulate social interaction;

(b) failure to develop (in a manner appropriate to mental age, and despite ample opportunities) peer relationships that

involve a mutual sharing of interests, activities, and emotions;

(c) lack of socio-emotional reciprocity as shown by an impaired or deviant response to other people’s emotions; or lack of modulation of behaviour according to social context; or a weak integration of social, emotional, and communicative behaviours;

(d) lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. a lack of showing, bringing, or pointing out to other people objects of interest to the individual).

(2) Qualitative abnormalities in communication are manifest in at least one of the following areas:

(a) a delay in, or total lack of, development of spoken language that is not accompanied by an attempt to compensate through the use of gesture or mime as an alternative mode of communication (often preceded by a lack of communicative babbling)

(b) relative failure to initiate or sustain conversational interchange (at whatever level of language skills is present), in which there is reciprocal responsiveness to the communications of the other person.

(c) stereotyped and repetitive use of language or idiosyncratic use of words or phrases;

(d) lack of varied spontaneous make-believe or (when young) social imitative play.

(3) Restricted, repetitive, and stereotyped patterns of behaviour, interests, and activities are manifest in at least one of the following areas:

(a) an encompassing preoccupation with one or more stereotyped and restricted patterns of interest that are abnormal in content or focus; or one or more interests that are abnormal in their intensity and circumscribed nature, though not in their content or focus;

(b) apparently compulsive adherence to specific, non-functional routines or rituals;

(c) stereotyped and repetitive motor mannerisms that involve either hand or finger flapping or twisting, or complex whole body movements;

(d) preoccupations with part-objects or non-functional elements of play materials (such as their odour, the feel of their surface, or the noise or vibration that they generate).

Now do these two things look even vaguely similar to you?

Autism started to be discovered at the same time as mercury/thimerosal was used in vaccines.

Proponents of the autism/thimerosal/mercury link say that autism and mercury became known at the same time – that the first cases of autism were diagnosed immediately after thimerosal was added to vaccines.

The dramatic rise in autism rates correlates with the increase in mercury doses. Thimerosal was first marketed in the mid 1930’s and autism was first described as a new never before seen disorder in 1943, in children born in the 1930’s.

No Mercury

However, its simply not true. There have been numerous reports that describe autistic people going back to Victorian Britain. The only thing that differs in these cases its the actual label of autism but there were certainly autistics long before either dental amalgams came into widespread use or vaccines were being used at all.

I also have anecdotal evidence of my own. 2 members of my family both born between 1910 and 1920 were diagnosed AS in the 90’s. However, they’d been the way they were since birth my grandparents claim – long before thimerosal was ever used in vaccines.

Autism cannot be genetically based because you cannot have a ‘genetic epidemic’

A very misleading argument as it presupposes the idea of an autism epidemic. It also supposes that even if there is an autism epidemic that mercury is the cause.

So, is there an autism epidemic? No. No Gvmt has declared epidemic status for autism at all. The phrase is simply part of an increasingly shrill demonisation of autism in increasingly disrespectful and shameful terms. Other phrases coined include ‘autism tsunami’ (distastefully coined after the events of last Boxing Day), the ‘hell’ of autism ‘autism is our enemy’ and many, many more.

In fact, as is usually the case in situations like this, the real reason is misunderstanding of stats:

The reason why some states show an “almost infinite” increase is that when you increase from zero to 100 the increase is “almost infinite” One does not measure a change from zero in percentage. If the change is from 2 to 100, one can say the number has gone up 50 times.

AutismDiva

Proponents of the ‘autism epidemic’ tout a figure of 1 in 166 for prevalence of autism. This figure is entirely bogus.

There has been no autism epidemic, whether or not there has been an increase at all is debatable.

AutismDiva

The reason there is an apparent increase in ASD is because of two things – better training allowing people to ‘spot’ ASD and more places one can get an official diagnosis:

Variation in the administrative prevalence of ASD is associated with education-related spending, which may be associated with better-trained educational staff who can recognize the problem, and more and better trained in-school specialists who can provide screening. It is also associated with the availability of health care resources. Increased access to pediatricians and school-based health centers may lead to improved recognition of ASD. Interstate variability in the identification of ASD should be taken into account when interpreting the results of prevalence studies based on administrative data and the associated system characteristics taken into account by policy makers working to improve the recognition of ASD.

David S. Mandell, ScD; Raymond Palmer, PhD

The incidence of research-identified autism increased in Olmsted County from 1976 to 1997, with the increase occurring among young children after the introduction of broader, more precise diagnostic criteria, increased availability of services, and increased awareness of autism. Although it is possible that unidentified environmental factors have contributed to an increase in autism, the timing of the increase suggests that it may be due to improved awareness, changes in diagnostic criteria, and availability of services, leading to identification of previously unrecognized young children with autism.

William J. Barbaresi, MD; Slavica K. Katusic, MD; Robert C. Colligan, PhD; Amy L. Weaver, MS; Steven J. Jacobsen, MD, PhD

federal and state administrative changes in policy and law favoring better identification and reporting of autism are likely contributing factors to the prevalence increases and may imply that autism spectrum disorder has been underdiagnosed in the past.

James G. Gurney, PhD; Melissa S. Fritz, MPH; Kirsten K. Ness, MPH; Phillip Sievers, MA; Craig J. Newschaffer, PhD; Elsa G. Shapiro, PhD

But surely the autism/thimerosal crowd have some stats of their own to counter these? Well, no they don’t. What they have (so they claim) is an absence of facts. A bizarre piece of ‘scientific’ reasoning that apparently ignores a basic precept of science: absence of proof is not proof of absence.

If the epidemic is truly an artifact of poor diagnosis, then where are all the 20-year-old autistics?

Boyd Haley

Its a shoddy piece of ‘logic’ repeated by David Kirby in Evidence of Harm. In fact, Haley knows very well where a lot of adult autistics are because he incurred their and their families wrath when he referred to autism as ‘Mad Child Disease‘. In the subsequent uproar that followed Haley was forced to confront the reality of adult autistics. Amusingly he also claimed he was using MAD as an acronym – Mercury Acquired Disease – obviously a better scientist than linguist he failed to spot that when lengthened out his phrase would read ‘mercury acquired disease child disease’. And in fact, he’s a pretty rubbish scientist as well.

Michelle Dawson also had something very pertinent to add to the ‘hidden hordes’ scenario:

Mr Kirby (author of Evidence of Harm who swallowed Boyd Haley’s thesis hook line and sinker) deploys the “hidden hordes” to express his disbelief in the possibility that there is no autism epidemic. Were numbers of autistics steady over the years, he argues, America would be clogged with aging hopeless autistics gruesomely burdening society. Mr Kirby cannot find us (I’m one of his “hidden hordes”) how and where he expects (doomed and confined to institutions), so he denies we exist. Szatmari et al (1989) suggests that Mr Kirby should look for his hordes in university records. In a follow-up of autistics diagnosed as children before 1970, 7 of 16 had university degrees (one was an MBA).

Michelle Dawson

Lots of studies prove a link between autism and mercury and there are none to disprove it.

Wrong on both counts. There are a few studies that suggest there may be correlation but none – none – that suggest causation at all. You can read a comprehensive review of the literature at Pediatrics online. By contrast only one study has been done which showed a link and this was shown to have flaws in methodology so severe that:

the Geiers have used shoddy study methodology and also engaged in data collection irregularities, drawing a rebuke from the CDC and suspension of Dr. Geier’s IRB approval from Kaiser-Permanente.

Orac Knows.

The Geiers in the course of their ‘investigation’attempted to compromise the confidentiality of patients on the CDC database. Nice going guys.

Of course, these studies that fail to show a link are pounced on and traduced as being produced by ‘shills’ in the pay of big Pharmaceutical companies. These same people though fail to mention that David Geier, one of the co-authors of the woeful study referenced above, works for MedCon – a company that helps vaccine injury claimants to obtain money from both the National Vaccine Injury Compensation Program and through civil litigation. Coincidently, Geier senior made (makes?) a good living on the side as a ‘professional witness’. Although as I’ve noted before – he’s not very well respected by either the judiciary or the medical systems in the US.

This point about correlation being different than causation is important to understand: On Orac’s blog Kaethe Douglass commented:

“The fact that Iowa’s 700 percent increase in autism began in the 1990s, right after more and more vaccines were added to the children’s vaccine schedules, is solid evidence alone,” says state Sen. Ken Veenstra. But Veenstra is wrong. That isn’t evidence. That isn’t anything but coincidence. The 1990s also saw a sharp increase in the use of car seats for children, but no one is blaming them. A 700 percent increase in autism, or any other diagnosis, is much more likely to indicate a growing awareness of a possible diagnosis, rather than an actual increase in patients suffering particular symptoms. And if Veenstra cared to do a little bit of research, he would see that the less specific diagnosis of “mental retardation” dropped as sharply as autism increased.

If people want to research possible causes of their kids autism then thats entirely up to them – I did it so I’m in no position to judge these efforts. But it behooves the researcher in question to apply scientific criteria to scientific data. Its no good extracting the bits that suit your argument and discarding the bits that don’t.

edit: Just noticed AutismDivas has made a very similar post to this – sorry AD!

Autistic Pride Day: Us

19 Jun

So what did we do for Autistic Pride Day?

Well, basically we did all the things that Meggy loves to do. First of all we went down to Sainsburys so Meggy could have a bloody good sing in a really echoey environment (song of choice: 1, 2, 3, 4, 5, once I caught a fish alive…)

When we got back we indulged her passion for DVD’s and basically gave her the remote and let her pick and choose whatever she wanted (age appropriate of course!).

Next up we went into the garden where Anthony (my NT 12yo son) and Meg indulged in Megan’s biggest love – water play. Megan would _live_ in water if we’d let her and its our ambition if we ever win the lottery to get a house with a wet room. She splashes so much in our current bathroom that it comes through the Kitchen ceiling so a wet room would be ideal. But for now this is the next best thing – outside in the garden with the tap on and a good natured brother to soak as occasion demands.

We had a great day all round, if you were marking the day, we all hope you did too. And next time someone starts banging on about the ‘hell’ of autism or how autism is ‘the enemy’ show them this post. We had a great day immersing ourselves in Megan’s world but most importantly, Megan did too.

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