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JB Handley – Interweb Genius

3 May

After the launch of Put Children First, JB was flushed with pride at the mighty accomplishments of his lovely new website. So much so that he posted the following to the EoH group:

I have been watching the web hits on PutChildrenFirst.org. The most hits are from the CDC’s router. Hey CDC, go fuck yourself!! Lots of love, JB

JB Handley, EoH.

Woah! Pretty impressive!

Except….lets delve a little into the murky geek-ridden world of web stats for a moment. What is a hit? Why do people think they are a good thing?

There is a common misconception that ‘a hit’ means a person has visited a site. Not so. A ‘hit’ refers to one _object_ on a page being accessed once. For example, if a user visits a page that contains 14 images and nothing else then 14 hits will be registered. If we wanted to get really worked up by ‘hits’ we could all add a million images to a web page and then as soon as one person visited that page – we’d have a million hits! – cool huh?

No, not really. I hope its clear why.

What’s worth getting excited over in terms of web statistics are _unique visitors_ . This refers to the amount of unique visitors that the site has received. Obviously, this is a much better indicator of how many users have actually seen your pages. But even this does not necessarily refer to _people_ as search engines, RSS spiders and a whole host of other automated bots are counted as users too. But still, this is the best way to get a reliable approximation on how many people visited your site.

So, what have we learnt? Hits are nothing to get excited about.

But that wouldn’t make much a blog post now would it?

Two of my favourite visitors to my humble little blog are Sue M and Erik Nanstiel. Together they can be counted on to loudly trumpet anything and everything that comes from the holy apertures of a select group of people, including JB. So when the putchildrenfirst site was launched, along came Erik and Sue to mention it at every available opportunity.

Well, someone must’ve followed a link from here to there because someone from there subsequently followed a link from _there_ back to _here_. And how do I know this?

Let me introduce the concept of _referrers_ – basically, the page you are coming _from_ leaves a footprint in the page you are coming _to_ – its how web statistics packages track who links to the site they sit on.

So, my referral to putchildrenfirst.org shows up in JB’s web stats package – whomever it is monitoring these things (JB, one would assume based on the above post to EoH) – is curious and clicks the link which in turn places the referring page from putchildrenfirst.org into _my_ web stats package.

So, I login to my webstats package this morning and lo and behold – what do I find but a link straight into the heart of putchildrenfirst.org’s web stats package. Cool :o)

Let’s see how well its doing shall we?

I could point you to the relevant page if you like: It’s right here and you can see for yourself. But, I also took the precaution of making a copy and uploading it to this site – just in case ‘someone’ decides to finally get smart and apply some basic security to their web stats.

I also thought it would be polite to offer an explanation of what’s going on for the less techy amongst you.

OK, the first line to note is the average visits per day. PCF got an average of 444 unique visits per day through April. For a site that was advertised all over the press, apparently seen on TV and was heavily promoted at a rally, that’s pretty crap. My own site, by comparison, gets an average of 3140 unique visits per day.

But lets also look at the section entitled _Daily Statistics for April 2006_ as this gives us a very clear picture of the popularity of the site. Remember that ‘visits’ – the yellow column in that table – is the key indicator. Using that we can see that on only 3 occasions did PCF get more than 1000 visitors per day – the 5th, 6th and 7th. After that, the visitor stats take on the appearance of a slowly deflating balloon. By the end of the month, PCF is barely scraping in 100 visitors a day.

Like a lot of single issue group websites, PCF suffers from the fact that it never has anything new to say. To have a successful site the absolute _biggest_ point to address is that of fresh, engaging content. I don’t know who the copywriter was for PCF but the breathless, barely concealed hysterical conspiracy theory-esque edge really does the site no favours. To put it simply – PCF was a novelty site who’s novelty value lasted 3 days and who reached the wrong audience.

What do I mean the wrong audience? Well, as JB says, one of the most popular visitor IP’s referred back to the CDC. Scroll down to the section headed _Top 30 of 10917 Total Sites_ for evidence of that.

One of the largest amount of visitors (please note this table is *not* sorted on amount of visitors) came from WilliamsBailey.com….a firm of lawyers…guess what one of their specialties is….can you guess?

I have to admit I’m very confused by this as JB recently wrote an open letter to Paul Offit on EoH which stated amongst other things:

No one who paid for the Ad is a vaccine litigant. No one who paid for the Ad is involved with trial lawyers.

JB Handley, EoH

I guess it must just be one of those strange coincidences that the joint 10th most popular visitors was a firm of thiomersal/autism lawyers.

However, the most popular group of visitors indeed came from the CDC – 38 visits. The second most popular was the MSN Search Engine bot. This is not the MSN search engine referring people to PCF, this is a visit from the automated script that ‘collects’ sites. Another notable visitor seems to be the AAP. The rest I don’t recognise so I would assume are ordinary visitors.

Now, if I was pushing a website in a national newspaper ad, and splashing the URL all over the TV and on placards at a rally, then I’d really want the ordinary folk of the country to be my visitors. That’s who need to hear my message. However, its clear that the main people who heard PCF’s message were the CDC, the AAP and thiomersal/autism lawyers – oh yeah, and an automated script or two.

Isn’t that kind of a waste of time? Don’t they already know how you feel?

So, lets move on to the referrers list – the section entitled _Top 30 of 1121 Total Referrers_ is the one you want. This lists the top 30 sites who have provided links to PCF – sorted by ‘hits’ unfortunately, which as we’ve already discussed is a meaningless statistic.

The most popular links to PCF is…..PCF. Not surprising – Webalizer (the stats package PCF uses) can (I think) be configured to ignore its own domain but nobody did I guess.

However, the next referrer is a _doozy_ – David Icke, shellsuit wearing, self-professed ‘son-of-god’ who believes we are ruled over by a race of lizards.

The rest of the referrers are other anti-vaccine groups. The only two of any note are ‘The Hill’ and a Press Release site. Neither generated a lot of traffic for PCF.

So, in closing, I think its fair to say that PCF was about as successful as a Thames whale rescue. I’d like to thank Erik and Sue M, without whom, whomever clicked through from PCF would never have been able to do so and I would never have been able to access PCF’s web stats.

JB – if you’d like a decent web developer to handle your sites from now on, I’d be happy to provide a quote. I promise not to leave your bare arse hanging out for the world to see either.

UPDATE: Looks like JB’s up to his old tricks again.

‘Acceptance Therapy’ In Action

27 Apr

I was sent a newly published paper today and for one it was a total joy to read from start to finish.

Usually I have to wade through mercury, MMR, epidemics etc. Today there was none of that. The paper is entitled:

A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome

An intriguing title and one that I admit I first thought was going to be heavy on religion and low on science. I was wrong.

The results of this paper were:

Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world
views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.

How absolutely refreshing not have to wade through the _Strum und Drang_ of ‘the hell/abyss/nightmare’ of autism and how all its ‘victims’ are destined for a life of institutionalisation, abuse and neglect.

Over time, parents may experience changes in ways of seeing their child, themselves and the world. These new perspectives may encompass profound rewards, enrichments, and the appreciation of the positive contributions made by people with disabilities

and

A wide range of positive changes or transformational outcomes have been reported by parents of children with disabilities, including: the development of personal qualities such as patience, love, compassion and tolerance (Summers et al 1989; Behr & Murphy 1993; Scorgie & Sobsey 2000; Kausar et al. 2003); improved relationships with family members and others (Stainton & Besser 1998; Scorgie & Sobsey 2000; Kausar et al 2003); stronger spiritual or religious beliefs (Yatchmenoffet al. 1998; Scorgie & Sobsey 2000; Poston & Turnbull 2004); an ability to focus on the present (Featherstone 1980); and a greater appreciation of the small and simple things in life (Abbott & Meredith 1986; Kausaret al. 2003). Studies therefore indicate that, with time and experience, parents of children with disabilities may come to regain a sense of control over their circumstances and a sense of meaning in life by seeing the positive contributions of their children with respect to personal growth and learning whatis important.

There is so much truth to this. My marriage and relationships with my kids has grown stronger and stronger. We have learned how to work for and support each other in so many ways and we place precious value on the here and now. We don’t get the twice yearly holidays, constant cinema trips etc that a lot of my peers enjoy but what we do is spend lots and lots of time with each other. This would never have happened if our daughter wasn’t autistic.

Initial reactions to parenting a child with a disability

I remember when I first got the diagnosis, my preoccupation – to be perfectly honest with you – was about me. It wasn’t about my son. It was about what I was feeling. And I was feeling powerfully upset about this diagnosis because . . . it just completely turns your life upside down. I had plans. I wanted my children to be happy but I wanted them to be accomplished. . . . So both of us – my husband and I – had this vision of our children as being academically keen. . . . So to be confronted with the possibility that my son would not even have imagination, I just didn’t know what to do. I was devastated. and I couldn’t fix it.

Again, this is a very accurate reflection of how I felt at the time. One turns inward and searches for reasons, for blame and for a way to _fix_ things. I have to smile as I look back at those days now but they were pretty awful. Particularly for our daughter who we subjected to _our_ guilt.

Family Strengths

This is a quote from a service provider:

I find that the majority of families that I know who have kids with special needs are some of the strongest families that I’ve ever encountered. . . . I remember someone making a comment once about ‘You must see a lot of dysfunctional families.’ I said ‘It’s the exact opposite, they are some of the healthiest and strongest families that I’ve known.’

And I think that _can_ be true as well. Not always. I’m aware of a lot of families who have not managed to move past the ‘me’ stage and I hear about divorces and arguments and screaming matches and custody battles.

Neurodiversity, Acceptance and Cure

No, the word ‘neurodiversity’ is never used in this paper but it may as well be – its _exactly_ what some of these parents are talking about.

Our children have taught us the true worth of an individual. Our society tends to value persons based on performance, knowledge, education, the ability to earn income. And these children have taught us that there are so many more inherently important values, which have shaped us as a family.

One of the most powerful quotes from a parent was this one:

Another thing that makes me feel that I am so much smarter than I used to be is that I have given up trying to fix my son. . . . All I have to do is figure out . . . what he wants and what will make him happy, and try to put a structure around it. . . . He’s fine the way he is, and it was for me to figure that out and, gee, the poor guy while I was figuring that out.

Fine the way he is. Are there people out there who can _hear that_ ?

And it’s true that if you don’t change the way you think about this child, if you always think that you wanted to have a normal child and you are always comparing your child to a normal child, you’ll never really be accepting and you just don’t get anywhere.

It really is as if these researchers had interviewed me for this study (obviously they hadn’t – its Canadian) as these are thoughts and opinions that I share. It says to me that far from being an isolated phenomenon, the ideas that underpin what I think of as neurodiversity are much more pervasive and widespread than a lot of people imagine.

I’ll close by saying how much I enjoyed reading this paper. It moved me to tears and it made me grin from ear to ear. The authors conclude:

The findings may provide families with a sense of realistic hope for the future, and may validate their perspectives by showing that they are not alone in their experiences and challenges. It may be beneficial for families to know that family life changes, and that other parents report changes in ways of thinking about their child and their parenting role that provide a sense of control and meaning in life. Parents may find it useful to know that it is common to feel a lack of control, and disappointment and sadness due to lost dreams. Over time, many families gain new dreams, develop new understandings of their child and of the world, manage life effectively by adjusting their priorities, and report life-changing benefits for themselves, other family members, and members of the broader community.

Hasten the day :o)

Enough

10 Apr

_An open letter to Generation Rescue, NAA, SafeMinds, ASA, A-CHAMP, DAN et al._

I’ve had enough.

If I might be permitted to make a few assumptions I believe its accurate to say that _we’ve_ had enough. Who are we?

We’re parents like you. However, unlike you, the self-styled ‘autism community’, we are also autistic people. We are also scientists. We are also professionals working in the field of autism. We represent groups of people that you never can and never will. We are fundamentally different in attitude from you and _we have had enough._

Enough of the lies. Enough of the misrepresentation. Enough of this media circus you are turning autism into.

_You lie._ When the NAA published its scurrilous attack on Paul Shattuck it revealed the depth of its desperation. By wilfully and deliberately *lying* about the ‘Merck’ connection, you revealed yourselves as people willing to do anything and everything to blacken the name of those who simply disagree with you.

When you allege conflicts of interest that amount to absolutely nothing – _and when they know this to be the case_ – then you again reveal yourselves as tawdry and grubby dirt diggers, desperate to besmirch people. The irony of your president having an established and non impartial financial connection to David Kirby and your chairperson having been in the pay of lawyers litigating the thiomersal connection is immense. It boggles both the mind and any ordinary persons sense of common decency. At the absolute least you owe Paul Shattuck an apology.

_You mislead_ . When Generation Rescue _continue_ to state baldly that autism and mercury poisoning are interchangeable – that one is the other and that is all that autism is, it is obvious that that organisation is comprised of absolutist zealots who care nothing for reality, science or truth – all of which are concepts that stand in direct opposition to your beliefs. When you ignore the reality that there is likely to have been _no epidemic of autism_ and yet you continue to use falsely inflated statistics like a 6000% increase in autism _and when *you know* this increase is down to better diagnosis, widening criteria and the fact that its only in the last 15 years or so that autism has been counted separately to other developmental ‘disorders’_ then you move beyond the bounds of simply misleading, you move beyond the bounds of simple innocent ignorance and enter the area of wilful, deliberate manipulation.

When you resort to buying and placing adverts that _you know_ are misleading and with which _you know_ the people you cite do not agree, when you resort to employing the services of media manipulators like Fenton Communications to dress up your spin for you then you have left simple campaigning behind and entered the realm of deliberately misleading, exaggerating and falsifying.

When Generation Rescue employ the services of men like John Best Junior to enter the homes of families then you know something is badly awry with the morals and ethics behind this organisation. These are the words of a Generation Rescue Rescue Angel:

Some “brilliant” goofball coined the term “Homophobia” in a pathetic attempt to bring some small measure of respectability to a perversion. Fortunately for me, I grew up in an era when people were not subjected to public acceptance of sexual perversion. I never “stomped” a queer and I don’t approve of that behavior. I also don’t want to have to hear about this nonsense portrayed as anything near normalcy.

The scientists you quote range from respectable to quacks. You misrepresent the nature of the respectable science and hype the quacks as credible scientists. When your science is conducted by men censured by government and peers (the Geiers) or is conducted by men who behave very curiously such as pre-registering patents that back up future research, source subjects for studies that are undergoing litigation or allegedly financially benefit from these associations (Wakefield) or who refer to autistic children as ‘mad’ (Boyd Haley) or ‘train wrecks’ (Rick Rollens/MIND) or who attempt to make their science relevant _to autism_ where it is clearly not (Hornig, Burbacher, Deth, Bernard) then you have a serious credibility problem.

But none of this – none of it – would matter at all, except for one thing (or several things). You call yourselves the ‘autism community’. You present your manipulations as fact. You fail to understand the good science and twist the bad science to fit your agenda. You rely on people such as David Kirby – a man who is demonstrably dishonest and a man like RFK Jr who invents conspiracies where none exist. These are the people who shape your policy and guide your information – David Kirby, Dom Imus, RFK Jr, Dan Olmsted. Journalists, chat show hosts and a wannabe politico.

Enough is enough. I’ve had it. Up until now, we’ve contented ourselves with correcting your ignorance and dishonesty in blogs, forums and chat rooms. Now we will be finding ways to extend ourselves. Wherever you are quoted, we will follow up. We will make sure that people know the sort of spin you employ, the sort of manipulation you attempt and the sort of people who are aligned to your cause. Because of you, vaccine uptake is dropping. Because of this, epidemics are breaking and people are dying. Because of you the field of autism research is being turned, into the words of Lisa Randall, into a ‘a vipers nest’ where scientists are more and more loth to get involved. Who can blame them when the sort of shameful behaviour in evidence on the Evidence of Harm email list comes to the fore? Parents hassling and abusing people like Paul Shattuck, despite his clear request for them to cease and desist. Parents making alleged threats of property violence against Paul Offit.

Because of you, the field of autism research is in extreme danger of sinking into a dark age. The gains that autistic people themselves have fought for over the last few years are slipping away into a _real_ abyss of ignorance and stigma. This must be stopped. _You_ have to be stopped.

This is about dignity. Its about respect. You have none and you are in the process of taking ours away. We will fight for it. For ourselves, for our children, for our siblings, for the good of diversity and to attack stagnation we will fight.

Get ready.

Autism ‘Epidemic’ Groups Turn To Misrepresentation

5 Apr

Following publication of the Shattuck paper casting doubt on the evidence for an autism epidemic:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

Source.

The usual suspects have begun to trot out the usual ploys to try and misrepresent and obscure. The National Autism Association write:

A study published today in Pediatrics, “The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” suggests that autism diagnoses haven’t actually risen over the past two decades, despite *growing and credible scientific evidence to the contrary*. In addition to the study’s *weak methods and erroneous conclusions*, questions have now arisen over possible *failure to disclose conflicts of interest* and *recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated*.

So first lets tackle the ‘growing and credible scientific evidence to the contrary’. Where is it? Where does it exist? Note that NAA totally fail to name, or even _reference_ this ‘growing evidence’.

They also mention ‘weak methods and erroneous conclusions’ yet again failing to illustrate what these ‘weak methods’ are or why they are weak. As far as erroneous conclusions go, that seems to be NAA double-speak for ‘things we disagree with but can’t back up’.

But what about ‘failure to disclose conflicts of interest’? NAA say:

Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC)

Somebody remind me again – what year is this? 2003? 1999? Or is it 2006? two years after Dr Shattuck had *an alleged* financial relationship with Merck.

UPDATE: Orac Provides the following: _”Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we’re talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities.”_

By comparison, Wendy Fournier, president of the NAA has an ongoing, established financial relationship with David Kirby – author of Evidence of Harm – as does Safe Minds. Claire Bothwell, Chair of the NAA, works(worked?) for Waters and Kraus, lawyers who solicit thimerosal plaintiffs over the internet.

Lastly, what about ‘recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated’? Sounds damning, until you read on:

Although he was not personally implicated, Dr. Shattuck’s former research partner, a graduate student at the University of Wisconsin’s Waisman Center, was recently disciplined by the Health and Human Services Office of Research Integrity for scientific misconduct due to fabrication of data. Dr. Shattuck and others published several articles and delivered scientific presentations using data from the project in question

So someone that Shattuck once quoted got themselves in trouble. Thats hardly what I’d call

…with which current study author Paul Shattuck has been associated…

There’s also no indication that these studies Shattuck referenced, or the presentations he made which referenced them had _anything at all_ to do with autism.

The press release goes on to say:

Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation,” commented NAA board chair Claire Bothwell. “Clearly, the CDC has a vested interest in deflecting attention from the possibility that children injured by mercury-containing vaccines ended up with autism diagnoses which fueled autism rates off the charts

First of a message to the NAA, Safe Minds, Generation rescue etc – *you are not the autism community* . You represent a small subset of parents. Thats it. What you have is a good PR campaign and a few pet journalists.

Secondly, its clearly the case that several anti-vaccine groups such as NAA, SafeMinds etc are beginning to get very very jumpy and have a vested interest in deflecting attention away from the increasing evidence that there has been _no epidemic of autism_ and that autism is not caused by thiomersal in vaccines. Autism rates are not ‘off the charts’ – the charts were simply never big enough to start with.

These groups need to stop politicising the issues, need to stop painting themselves as ‘the autism community’ and need to stop this pointless and utterly transparent attack on any credible science that undermines their isolationist position.

Dan Olmsted And The Autisms

2 Apr

No, not a new rock group.

Dan Olmsted is a UPI reporter who forms part of the Holy Trifecta of Media – the other two prongs being Evelyn Pringle and of course, good old honest, impartial David Kirby.

Dan Olmsted burst onto the scene with the attention getting ‘Amish Anomaly’ wherein he discovered through an exhaustive and meticulous system of asking a water purifier salesman if he knew of any, that only vaccinated Amish people are autistic.

The ‘Amish Anomaly’ caught peoples imagination – ‘if vaccines don’t cause autism then why don’t the Amish have more autistic people’? was the cry on everyones lips – conveniently brushing aside the fact that Olmsted’s system was about as much use as a chocolate fireguard – and also conveniently brushing aside the fact that the Amish have a virtually closed gene pool. But of course all right thinking people know that autism was invented by Eli Lilly in 1931 thus these facts don’t make any difference.

So it must’ve been strange for these ‘right thinking people’ when a bunch of autistic people turned up right in the same area Dan Olmsted performed his meticulous research. Only these people were found as part of a research paper summarised here.

A study of Old Order Amish children has identified the genetic mutation that causes a previously unknown disorder, with seizures that progress to autism and retardation.

How could this be? Surely a reporter as experienced as Dan Olmsted with autism couldn’t have missed this? Here’s Dan’s primary source – the water purifier salesman – again:

I’ve got to tell you, I have never seen an autistic Amish child — not one,” he said. “I would know it. I have a strong medical background. I know what autistic people are like. I have friends who have autistic children.”

And here’s the science again:

A study of Old Order Amish children has identified the genetic mutation that causes a previously unknown disorder, with seizures that progress to autism and retardation.

Huh. Something of an anomaly. Or maybe – just maybe – Dan Olmsted’s source was full of shit.

So how _could_ Dan’s source have screwed up? Maybe because he _doesn’t_ know autism as well as he thinks he does. These children were ‘secondary’ autistics: those who’s autism is a comorbidity in itself (example: in this page autism is a comorbidity of Down’s Syndrome). In the case of the children in this study, their autism was secondary to their seizures.

However, that does _not_ equate to them not being autistic any more than an autistic person with a comorbidity of asthma is not asthmatic.

This is _exactly_ why reporters words shouldn’t be enshrined as gospel truth. If Dan Olmsted had noted he’d not found a lot of autistic people amongst the Amish and left it at that or even followed it up a bit more responsibly then there would be no problem. However, as befits a good friend of SafeMinds Director Mark Blaxill, he went in with a preconceived agenda and thus found (or failed to) exactly what he wanted.

Read more at Prometheus’ place, Autism Diva’s place and Dad of Cameron’s place.

A Few Questions For David Kirby

28 Mar

A few questions for Mr Kirby.

(All originally posted in the comments section of the above blog post)

You state that a study has recently been completed that:

showed that a few minutes of exposure with even miniscule amounts of thimerosal can damage dendritic cells, causing immune dysfunction and cytokine-induced inflammation, both of which are found in autism.

I’m aware of the study you are referring to but I am unsure of which study you draw your conclusion from that cytokine-induced inflammation is found in autism. You also fail to mention if it is a typical or rare phenomenom. Certainly it fails to appear in the diagnostic criteia for autism and a Google Scholar search for “”cytokine-induced inflammation” autism” reveals nothing. The same is also true for your claim that immune dysfunction appears in autism. You fail to state whether this is a common or rare occurance and yet again, it fails to appear in the diagnostic criteia for autism. Based on those facts, I fail to see what worth your interpretaton of this study has.

You are a staunch believer in the mercury/autism connection despite their being no symptomatic connection between merucry poisoning and autism except for that published in the oft-refuted ‘Mercury: a novel form of mercury poisoning’ paper.

Further, In the New York Times in 2005 you stated:

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

The rates of autism did not fall that year.

A couple of months later you told blogger Citizen Cain:

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis

I was puzzled enough by the discrepancy of you adding on two years to email you to ask you to clear it up. You replied to me:

Many thanks for your note. The Times misquoted me. I actually asked for a correction, but did not receive one. What I told the reporter is that we should know in the next few years.

In the interests of being thorough, I prevailed upon the two reporters for the NYT for their version of events. Reporter Gardiner Harris replied:

Prior to publication, we read the entire passage relating to this matter to Mr. Kirby. He approved it.

And reporter Anahad O’Connor said:

…we stand by that quote. David Kirby was interviewed at length, and we verified that quote and additional information with him before the article was published. He certainly did not object to that assertion at the time.

It is hard to escape the conclusion Mr Kirby, that you misled me and that you further tacked on a couple of extra years when the autism rates failed to decrease to support your original assertion. Will you now stand by your original statement that the incidence of autism should’ve fallen in 2005?

You attempted to use California DDS data to back up your continued assertion that autism rates had climbed throughout peak thimerosal useage periods and then dropped after thimerosal removal from the majority of vaccines. However, when blogger Citizen Cain pointed out you were using the data incorrectrly you conceeded:

…that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

Even a cursory glance at current and past CDDS data reveals that according to CDDS data, that cohort is still actively rising. Do you see that as another indicator that thiomersal plays no role in autism as you implied in your NYT interview?

In the course of this blog post you have made repeated mention of thimerosal still being in vaccines in the form of the flu shot. I wondered if you knew of the total mercury burden over time of mercury in vaccines?

US pre-thimerosal removal: 187.5 µg Hg.
US just flu shot: 25 µg Hg.
UK pre-thimerosal removal: 75 µg of Hg.

The US and UK have almost identical prevalence rates for autism. Given that we have very different thimerosal rates, how do you reach the conclusion that thimerosal can cause autism? Given those stats, shouldn’t US children have far more ‘full syndrome’ autism than UK children? How do you also account for the fact that even though US children are now recieving approx 7.5 times less thiomersal than they were at the height of thiomersals use the rate of autism amongst the 3 – 5 cohort is still climbing if we examine CDDS data – data that you refer to as the ‘gold standard’?

You are also a stauch proponent of the idea of there having been an epidemic of autism. You don’t base this on any science but rather what you claim to be an abscence of adults. Indeed on this very blog you asked:

But if autism is purely genetic (without an environmental “trigger”) and 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?

You may remember that I mailed you a PDF report (http://www.scotland.gov.uk/Resource/Doc/1095/0001881.pdf) from the Scottish government of a 2004 ‘audit’ of autism. One of the questions they asked the Health authorities, Trusts etc under the national banner was:

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?

Approaching 45% of all councils/executive/NHS Trusts questioned responded that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis. A typical response was:

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. _(Perth & Kinross Council)_

I apologise for mentioning this here but you failed to respond to my email regarding this matter.

Thanks in advance for your comprehensive answers.

UPDATE: Mike Stanton has found yet more evidence of your ‘hidden horde’:

_Liam Byrne, the health minister, said that 6,170 children under 16 had been diagnosed in England last year, compared with 3,100 in 1997-98. The number of cases including adults rose from 4,220 to 9,170 in the same period._

_So autism diagnoses for children have nearly doubled in 8 years from 3100 to 6170. Meanwhile adult diagnoses have nearly tripled in the same period from 1120 to 3000._

UPDATE No. 2: I just remembered an interesting quote from a New Scientist feature on the autism ‘epidemic’:

This view (that there are many children today diagnosed with autism who would not have been labelled as such in the past) is difficult to substantiate, but in 2001 a team led by Helen Heussler of Nottingham University, UK, had a crack. They re-examined the data from a 1970 survey of 13,135 British children. The original survey found just five autistic children, but using modern diagnostic criteria Heussler’s team found a hidden hoard of 56. That’s over a tenfold rise in numbers, which puts the California figures in perspective. Heussler and her colleagues concluded that estimates from the early 1970s may have seriously underestimated the prevalence.

The Path Of Most Resistance

2 Mar

I’ve read a couple of posts today, both from people I respect a lot, that really made me stop and think about the nature of my own blogging and what I’m doing.

The first was a post from Susan in which she talked about the Autism Club:

I believe that an even better cause for the planet would be teaching tolerance for difference, whether it means tolerance for a different opinion from your own, or tolerance for the full spectrum of people we come across. Tolerance/inclusion is not about hitting people over the head with your viewpoint, but by providing gentle example. At any rate, if we’re all doing the best we can, which I assume we all are, that should be the bottom line. Autism should not be the club we use against each other.

I am conflicted about this. Let me explain – I think Susan is a great role model for parents of autistic kids and I think in the broader implications of what she says here (and I urge you to follow the link and read the whole piece) she’s spot on – we _should_ all be working together. However, in the three plus years I’ve been blogging about autism I’ve grown more and more saddened by the realisation that this doesn’t seem to be possible. I used to want to provide gentle example but as time progresses and viewpoints become more entrenched I find myself firing off a volley rather than providing calm reflection.

My problem is this: there are people ‘out there’ who want to make money or prestige from autism. There are other people who seem to genuinely hate autistics and the whole idea of autism – some of these people are parents. Some are grandparents, some are friends, brothers, cousins. Some are autistic themselves.

I cannot seem to find a way within myself to accept that these people merely have a differing opinion than mine. Different opinions are for things like what taste in music someone has. The things this group of people espouse revolve around the viewpoint of autism being something abhorrent. I find myself unable to let the things they say go unaddressed.

I _want_ to be able to say that it doesn’t matter so ‘each to their own’. But it does matter to me. It matter when people start using utterly untested treatments. It matters when children die. It matters when adults are dismissed for the ludicrous viewpoint that because they can talk or type they have no insight. It matters that science is hijacked by ignorance.

None of this is to have a go at Susan who as I say I respect deeply. I know she feels these things deeply too. Her post merely helped coalesce my thoughts.

The second post I read was from Estee who talked today about the lonliness, struggle and profound joy of parenting an autistic child. Its a great title and a great post, just like Susan’s. Estee says:

Some people take these debates, points of view, so personally (a hazard of religion as it involves so much emotion), that I have discovered a very dark side of autism. I discovered that parents with autistic children are so divided that the support I was seeking is hard to find. Instead of a journey to discovery, it is starting to look more like a war out there.

Depressingly true.

When I first started blogging about autism I have the distinct impression I was pretty much alone. I’m someone who makes their living from the web so I know how to tweak the technology to find things. I didn’t find anybody. I determined that in order to raise the wall of societal ignorance about autism I would talk about Megan. I would document our lives – the loneliness, the struggles and the profound joys as Estee describes it.

Somewhere along the line, as our family increasingly realised more about Megan and about autism and as we read more and more from autistic people themselves our views about things changed. I started to realise to my horror that there was a whole subculture ‘out there’ that wanted nothing less than the total eradication of my daughter and everyone like her. Defeat Autism Now. Cure Autism Now. Defeat Autism Yesterday.

Against such large, highly mobilised, politically aware organisations what chance did my daughter have to be viewed as someone worthy of respect? If she was seen as someone to defeat, how could she ever win at anything?

So I started to fight back. I don’t want to fight. I want these people to accept our children, both young and grown, up as _different_ – with _different strengths_ because my daughter and everyone like her shouldn’t be a prize to fight over. She should just….be….and be respected and allowed to just be. Nobody’s drowning in a tsunami over here. Nobody’s disappeared into the maw of a holocaust.

This is an emotive subject we all talk about. It goes right to the heart of what it is to value and be valued. I believe those who wish to ‘cure’ their children love them deeply in the vast majority of cases. However, I also believe that they are mistaken about the risk to benefits ratio that such treatments can offer. I further cannot understand how one can wish to remove something and also claim to value it.

My choice is that I will do my utmost to change the world for the good of my children. I will not see them dismissed as a collection of medical ailments to be treated with dangerous things. There is no respect in that position. There is no chance for a child to feel positively about themselves.

It shouldn’t have to be that way. In an ideal world it wouldn’t be. But in a world that contains people like John Best Jr – a racist, homophobic parent of an autistic child who runs a blog entitled ‘hating autism’ and who claims to know his child is mercury poisoned despite that child never having *even been tested* for any form of metal poisoning then I cannot stand by and let these things go unaddressed and uncommented on. My daughter needs a daddy who’ll fight for her when the need arises. That that is a necessity is, as both Susan and Estee intimate, a tragedy.

But sadly, it seems it is a necessity.

Web Developers Are Idiots Too

13 Feb

Very infrequently on this blog, the two main areas of discussion (autism and web development) intersect. Today is one of those times.

You may or may not know that the US National Federation for the Blind are suing Target over their inaccessible site. The NFB alerted Target some months ago and to retrofit the changes would be easy so they can hardly moan about it – besides, do it right the first time, hire a developer who knows his job. Its not rocket science.

The really appalling thing has been the whiney response of the web dev community:

Filing a lawsuit after 10 months of their initial contact with the company (if this is true, a pretty short legal time frame even in this dynamic world) is an irresponsible use of our over-burdened court system.

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The bottom line is I will not be the burden on the tax payers of my state by abusing a law that was enforced by some special interest group in a court of law.

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The internet is not a birthright, neither is the phone, neither is buying an electric blanket at Target and it has nothing to do with lack of empathy. Blind people can’t drive cars either … shall we sue the auto makers that they aren’t making automobiles accessible?

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Yes, it’s bad form for sure. Who doesn’t know enough to use alt tags? But I certainly hope the lawsuit gets thrown out.

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Alt ‘tags’. Right.

This is not the sixties and we are not fighting an evil empire. This is simply a case of a retail company not putting enough time and thought into one aspect of their sales.

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I’d say there’s a whole bunch of people here who like to put other people in little boxes. What would the collective response be if Target suddenly stopped serving black people? Or Jews? Or Hispanics? Or women? Or gay men? There’d be outrage and quite rightly so. Discriminating against a person simply because of their level of ability is wrong. Legally and ethically.

This isn’t a case of having to go back and make large scale changes – _any halfway decent web developer already knows how to make a page that will at least comply to Priority 1 for christ’s sake_ .

And thats at the heart of both the 508 legislation in the US and the DDA over here – no one _wants_ it to come to a court case but the simple fact is that a lot of so called web developers are basically shit at their jobs. If they really can’t do it right then they should get back to something they _can_ manage – McDonalds are always hiring.

But then things start getting really nasty.

Whats ignorant is thinking disabled people are normal. They are not normal. Stop drinking the PC happy juice. The idea that everyone, regardless of their personal condition, has a “right” to the exact same life is one of the most ridiculous notions of the modern era. Here in the US we spend 10x more per year to send one disabled kid to a normal highschool than we spend on the smartest kid in that highschool. Then we wonder why our kids aren’t as smart as those from other countries. Chances are the disabled kid probably doesn’t even know the difference, its only so his parents can feel their kid is normal.

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I’m not ignorant to the plight of the disabled, be it from birth or some accident/problem during life. I have my own problems (although not to this extreme, I admit) and the one thing I don’t do or accept is whining and crying about it. Accept your limitations, revel in what you still CAN effectively do, and deal with the rest in a more dignified and appropriate manner.

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This is from a so called web development community – SitePoint forums. I’m ashamed to say I have bought books from them in the past but they can rest assured I won’t be doing so in the future. The opinions expressed in that thread (and I only went three pages in, I couldn’t stand the sheer idiocy on display) seem to me to demonstrate something clearly lacking in these people. Yes, they’re largely ignorant on a technical level (one of these goons said as websites were purely visual why should blind people expect to be able to use them) but the more disturbing thing, speaking as the parent of an autistic child, is the indifference bordering on malevolence these comments reveal on the part of the commenters.

So you might be thinking – ‘so there’s some nasty arseholes around – big news’. And you’d be right. Ask any parent of any person considered to be different and you’d find some fairly depressing tales about society at large. Better yet, ask the people themselves and you’d hear some true horror stories about the interaction between those considered disabled and those considered abled.

This is 2006. Its not the 19th century. However, I fear that the likes of the idiots quoted above are firmly in the majority – those who will campaign to put money before people and those who will indulge their dislike of anyone different from them. We need to find a way to get past this irrational fear and hate of difference or not only do we become ethically corrupt (or more accurately _remain_ ethically corrupt) we stagnate as a species.

Vive la difference. Celebrate diversity. Whatever. Just try to find a way past the prejudice of idiots – then we all win.

Autism Is A Gift

12 Feb

OK – before I start its important for me to confess to a conflict of interest in this matter. As a fresh faced young man, Sigourney Weaver formed part of my Godess Trifecta in that I lusted after her, Gillian Anderson and Geena Davis with equal amounts of teenage/twenties lechery.

Ms Weaver has recently finished filming Snowcake in which she plays an autistic woman whos daughter dies in a car crash. My good friend, the incomparable Autism Diva has written a piece about it here.

During an interview, Ms Weaver said:

“I think we have to begin to see it [autism] as a gift,” she told a news conference. “We may not understand what it’s there for, but if you’re in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is.”

I have to say that despite my teenage carnal desires for Ms Weaver (OK, OK, I still have them) I don’t agree with her stating that ‘autism is a gift’. I don’t agree with it for the same reason that I don’t agree with the ‘autism is hell/death sentence/evil/etc’ viewpoint. Both views, taken literally, are misleading and superficial. Its my opinion that autism simply ‘is’. To be autistic is to be autistic. To be right-handed is to be right-handed. To be gay is to be gay. None of the states of being have moral or ethical states associated intrinsically with them and they don’t, in my view, need that status thrust on them either.

That said, its difficult to disagree with the positivity my future bride Ms Weaver brings to the state of being autistic and how we as NT’s can relate to it positively.

As ever though, there’s a bunch of literalists who still can’t see the woods for the trees:

A gift to whom? Surely not the person with autism, or his or her family. Perhaps actresses in search of roles? If autism is a gift, what’s terminal brain cancer? Hitting the Lotto?

John Gilmore, EoH List.

…If I sent her a letter I think that it would be along the lines of telling her how very happy it would make me to have her experience this ‘gift’ in her own life, ie, by injecting HER with enough toxins to destroy her body and mind.

Robin Nemeth, EoH List.

Ms. Weaver is no doubt confused over the junk label “high functioning autism.” It is not too late for her to personally experience the joy of autism. I’m sure she could find one of those mercury lusting doctors to shoot her up enough Thimerosal for her to join the bandwagon of the neurologically injured. OK, that’s my sarcastic take.

Lenny Schafer, EoH List.

What a bunch of me-me’s. These are the people who refer to themselves, with no apparent irony, as the autism community.

However, there was one great post on EoH which I have pleasure in quoting in full:

Well, even though I know this is gonna open a can of worms, I agree with her. When I’m in the presence of people with autism, I do learn a great deal. I learn acceptance of others who I would not have accepted as people only a few years ago. I learn that the person with autism has just as much dignity and right to be respected as anyone else. I also learn what pure love is and how scary it is for people with autism to trust others because they are often ridiculed by others. I teach my daughter every day that having autism should be source of pride; to contrast, it certainly isn’t something she should be ashamed
of. Yes we work on healing her body, but I’m proud of her and want her to have pride in herself regardless of treatment status. Because people with autism can suffer with horrid medical conditions and the people who care from them suffer does not mean people with autism are not wonderful people. From what I read, that’s the meaning I got from her, that people with autism need love, respect, and acceptance.

Debi, EoH List.

Debi, if you ever read this, you may be alarmed to know that you’re frighteningly close to espousing something very very close to what I think of as neurodiversity. Good on you for seeing the bigger picture.

Then we swung back to comedy:

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

Erik Nanstiel, EoH List.

Something of an irony when one considers that in the EoH file repository is a document that contains the sentence:

Finally, for the ultimate inspiration, here is a video of actor Lou Diamond Phillips introducting a cast of recovered autistic children

EoH Files.

Many people on the EoH list suggested emailing the films writer Angela Pell to let her know that she obviously had no idea about the hell of autism. Apparently they missed the bit where Ms Pell is described as having an autistic son and therefore knows just as well as they do both the lowpoints and the highpoints of parenting an autistic child.

And you are the parent of a child diagnosed with autism, everyday you are immersed in your child’s life and you deal
with the hardships that come with autism. You have a right to say that. Weaver doesn’t. Weaver is talking about what other people can get out of people with autism. She is not part of our community, she hasn’t paid her dues.

John Gilmore, EoH List.

Just to reiterate for the hard of comprehension – Ms Weaver is an actress, playing a role written for her by someone _just like you_ – the parent of an autistic child. All the words she utters were put in her mouth by the writer. Her beliefs have come from interacting with Ms Pell, Ms Pell’s son and people like him – y’know – autistic people.

In the post quoted above Gilmore goes on to say:

Our children are gifts and we should be grateful for them exactly the way they are. This is exactly what the neurodiversity types are saying.

Not quite John. I don’t consider autism a gift or a curse – it simply is what it is. Also, no one is saying you should ignore bad situations. What I’m saying as someone who respects the state of being autistic is that _that’s_ whats important – respect. You don’t have to be grateful for anything other than the fact that you managed to have a healthy living child. Some people don’t even get that. Whining on about ‘its not fair’ is pointless.

Then there’s the usual mistaken identities:

Sigourney Weaver is more than welcome to join me at the IEP meeting at my son’s school. Maybe she can make them understand that my son has been granted the “gift” of a comprehension level of a preschooler when he is 9 years old.

Jane Milota, EoH List

I’m not sure I would consider the way other children treat my son “really good fun”. I wonder if he’s having fun when they pull his hat over his eyes or just grab it off and throw it as far as they can. It’s not “really good fun” for me to try to explain to him that these children are not his friends. Apparently it is “really good fun” for these children that my son does have “high-functioning autism” Maybe Ms. Weaver and Ms. Pell would like to take a trip to Long Island and see “the gift” my son enjoys every day.

Cathie, EoH List.

Both tragic, horrifying situations but *not the fault of autism*. One is the fault of a schools ignorance and one is the fault of bad parenting by the people Cathie’s son has to deal with.

We really do have to find a way to move away from demonising a state of being that simply is what it is. The fact that its still poorly understood, badly catered to and swept aside is something that parents should be campaigning about – not getting caught up in fictional causative arguments.

Autism Hub

9 Feb

I’ve instigated a new project today that I’ve called Autism Hub.

The idea is very simple – to aggregate blog feeds regarding autism in one place. Its very difficult sometimes to extract meaningful information from the huge sea of data that comprises the Internet and there’s so much we’re in touch with now that we wish we had been when we first began this journey that it seemed a good idea to try and unify some of the pertinent content out there.

Obviously, my beliefs being what they are about autism, I’ve set a ground rule that all the blogs that form the Hub membership must adhere to the central concepts of a) respect for the condition of being autistic and b) not promote a ‘cure’ mentality. That doesn’t mean the blogs that form the Hub don’t discuss interventions such as speech therapy, PECS etc because some of them may well do.

Basically, what the site does on a technical level is to periodically grab the RSS or Atom Feed of the members blogs. It then extracts the latest post from that feed and enters the details of that post into a table in a database on my server. Whenever someone accesses the Hub site, they access the data in the database.

There’s also a directory listing of all the member blogs on the site as well as a link to their Feed. There will also shortly be a dedicated RSS feed for the last 10 posts across all Hub members.

The Hub site itself is at a very basic level of functionality right now to which I hope to add over time. In the future it may be that visitors become users and can create their own aggregated content from the feeds provided which they can pick and choose from and save their preferences.

In the meantime, go have a browse around – there’s about 14 members signed up so far. If you know of any blogs who you’d like to see added to the Hub or you yourself maintain an autism related blog you’d like to join, please let me know as per the instructions on the site.

For those interested in the technical details of how the code works I expect I’ll be discussing that in a separate post under the Right Brain category at some point in the near future.

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