Archive by Author

Using A Website

20 Apr

As you may know I occasionally write posts that touch on web design/development. Even more infrequently I sometimes write posts that touch on autism _and_ web design/dev issues. This will be one.

One of the core skills any halfway decent web designer/developer should have is that of making a site accessible. A lot of sites are not accessible. What ‘accessible’ means is ways a designer can code a solution to ensuring that their end product (usually a web page) can be read by as wide a range of visitors as possible, regardless of disability.

A small easy to understand example: blind users may use a device called a Screen reader which basically sits between the browser and the user and does exactly what it says – reads the screen. Most software of this type is far from perfect and much room could be given to making this type of software operate in a more standardised way.

However, as designers/developers we have a responsibility too. We need to use the appropriate markup and to not put extra barriers in place. A small example of a barrier: many of my autism blogger colleagues use Blogspot.com to host their blogs. Its easy to use and free. Good deal. However, they also use comment authorisation routines that include those little graphics of random letters and numbers that a commenter must fill in (official name CAPTCHA). These tests are totally inaccessible. As they are randomly generated and rendered as images, screen readers cannot read the text embedded in the image and thus anyone who utilises a screen reader cannot post on a blog that has a CAPTCHA solution implemented. Google (who own Blogspot.com) are experimenting with audio based CAPTCHA’s to get around this issue.

There are hardware and code-able solutions for users with a variety of physical and cognitive disabilities but its strikes me that autism is…_other_…its not defaultly a cognitive disability and its not defaultly a sensory disability. In fact, its not truly a disability in the strictest sense of the word at all. However, it further strikes me that there are almost certainly a whole host of design/interface issues that face a person who is autistic when they try to use websites. I cannot guess what those may be although I would tentatively surmise that maybe the branding aspects of a design do not have the same level of emotional impact that they would on a non-autistic person.

So what I want to do is throw open the comments to as many autistic people as possible so I can get a sense of what issues (if any) you may face when browsing a website, what works for you, what doesn’t work for you. What are examples of good sites and bad sites. Do you like short pages, long pages, don’t care? What colours are good, or bad? Are icons more intuitive or plain text links? Lots of imagery a good thing or a bad thing? Do websites ever get so ‘busy’ that they lead to a point of overload? If so, why? What _design_ aspects may lead you to purchase via a website – or put you off purchasing via a website?

Let me have it :o) Feel free to crit this site if you feel moved to. Feel free to comment anonymously if you’d rather.

Conflicted

19 Apr

Four days ago, a mother and her autistic son died after jumping into the River Ouse.

One dark figure is seen leaping from the walkway into the River Ouse, near Hull, followed eight seconds later by the second person. Ryan’s (12) body was recovered from the river on Sunday. Alison (40), who was suffering from depression and worried that her son was being bullied, is still missing and presumed dead.

Mirror

I’m very conflicted about this story. About what this mother did.

On one hand we cannot pretend that what she did to her son was anything other than murder. It wasn’t an accident. She left a note saying she intended harm to herself and her son. A lot of the news stories that have surfaced after this event are written from an angle very sympathetic to the mother. They are accompanied by feature pieces detailing the ‘horror’ of autism and the ‘hopelessness’. One could almost come away from reading these stories believing this was a mercy killing.

It wasn’t. It was murder. If Ryan had not been autistic then the stories would have been a lot less sympathetic.

On the other hand, its quite clear that this mother was clinically depressed. She was alone seemingly without support. Depression is an awful, crippling mental illness and lots of people succumb to suicide whilst in its grip.

In this case we have to ask – where was the support for this family? Where we social services? Where were the LEA? Where was _society_ ? I don’t believe that depression is something that someone can hide or mask so well as to disguise suicidal or homicidal feelings. Why did no one alert social services?

This is all of our fault. Society has an obligation to support its members. We failed this ill mother and we definitely failed her murdered son.

Part of the reason is the utter ignorance that surrounds autism. I know I was totally ignorant about autism at one time. I felt like I had failed my child. I felt like it was the end of my world. I felt like the future for her was empty.

But I’m not clinically depressed. As a family we were able to (thankfully) move past these feelings and move into a place where we could move forward with acceptance and start to benefit our child. If someone is clinically depressed its understandable how one could never get past that stage if they have no help.

So what do we do? We need to start challenging negativity about autism. We have to start talking about its positivity as well as its sometime negativity. We have to start listening to people who know what they are talking about. We have to start supporting parents better with accurate information rather than informing them that their child’s future is a silent shell like existence followed by institutionalisation as soon as they become adults.

Please listen to autistic people talk about autism. Please discuss all options with new parents. Please point them to good resources. Please stop instilling despair in them.

Autism Becomes A Political/Legal Football

17 Apr

In the most recent edition of the Schafer Mercury Report, editor Lenny Schafer has a fascinating response to a letter writer. Its not really necessary to reproduce the letter, but Schafer’s response is a gem:

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public. Since public health by definition is political, legal standards are even more so appropriate. The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless. The defenders of mercurated vaccines are in trouble and attempt to hide their malfeasance behind lab standards.

I mean _wow!_

This is a de facto admission that the scientific evidence to support an autism/mercury connection is very weak:

…. where standards of evidence are different than that of the narrow focus of scientific findings.

By ‘different’ Schafer really means ‘lesser’. I mean call me naive here but I was under the impression that the debate with the mercury militia on one side and the AAP, CDC, UK Gvmt, NHS, and ourselves – autistic advocates – were having was a _scientific_ debate. How silly was I? According to Schafer:

Since public health by definition is political, legal standards are even more so appropriate

Public health is by definition political? Really? Only if you can only see one thing at a time maybe. Widen the lens a little bit and I think every medical research scientist, patient and doctor/nurse might see public health as something a little bit more than a simply political process.

This is a debate at its core about what it means to be autistic. What causes people to be autistic. How in God’s name can that be political beyond the kind of infantile number crunching the Generation ‘6000% increase’ Rescue go in for? The people who have politicised this debate are the ones who employ media manipulation specialists such as Fenton Communications.

But hey – lets not worry about that – lets not worry about the *fact* that learning more about autism is a core scientific responsibility. Turning it into a manipulated football to kick about at the whim of a lawyer is much more realistic.

Schafer is absolutely right that scientific standards are greater than legal ones. Stronger, more stringent, demanding of _actual_ evidence. Maybe Schafer could remind me: was it science or a jury that discovered electricity? Was it science or a jury that discovered penicillin? Science or a jury that took men to the moon? Science or a jury that discovered our place in the stars? Our place in nature? Our place in the future?

But then again:

…if you can convince a jury, you can convince the public…

Because y’know, science is _hard_ . Stick instead to trial lawyers so we can let the sort of people who got OJ Simpson cleared, or the Birmingham Six banged up to sort out the tricky concept of autism. Great idea.

_”The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless.”_

Yeah, its all a big conspiracy. Like the one that saw SafeMinds purchase the domain evidenceofharm.com or the one that saw Wendy Fournier of the NAA build Kirby a website, like the one that had Richard Deth listed as an expert witness without his knowledge, or the one that tried to smear Paul Shattuck, or the one that had the Chair of the NAA working for thiomersal lawyers Waters and Kraus, or the one that saw Andrew Wakefield allegedly filing a patent for a rival vaccine to MMR *before* he published his paper, or the one that had Kirby add on two years to his statement regarding when the thiomersal connection would be in trouble, or the one that saw RFK Jr talking about the results of a study from the Geiers several months before it was published, or the one where the Geiers started patenting Lupron therapy, or the one where Generation Rescue placed words in the mouths of scientists.

Its true that your scientific case is very weak Mr Schafer. Without that science, so is your legal one.

The John Best Junior Thread

13 Apr

For some time now, John (aka ForeSam to the uninitiated) has been crying that he’s been banned from this blog and been using that ban as an excuse. I’ve decided to call his bluff.

For this thread, and this thread only, John will be free to argue, debate, insult, rage, pontificate and generally be the John Best we know and love.

In this thread will be discussing the following:

1) John’s belief that Eli Lilly invented autism in 1931. John says autism did not exist before Jan 1st 1931.
2) John’s belief that all autism is mercury poisoning from thiomersal in vaccines.
3) John’s belief that there was no autism in China prior to 1999. John says autism did not exist in China until Jan 1st 1999.
4) John’s role as speaker at mercury militia marches and his position with Generation Rescue
5) John’s opinion on homosexuality, which he believes is ‘a perversion’, and his subsequent opinion of David Kirby.
6) John’s belief that as an adult male, fist fighting with his eight year old autistic son is a sign of good parenting.
7) John’s belief that there has been an epidemic of autism.
8) John’s belief that because Dan Olmsted didn’t find any autistic Amish, this proves thiomersal causes autism.
9) John’s belief that it is acceptable to state that women he disagree’s with should be ‘horsewhipped’
10) John’s belief that phoning people he disagree’s with at their homes to abuse with them is acceptable.
11) John’s belief that the word ‘muslim’ is interchangable with the word ‘terrorist’.

Go for it. Either now, or wait for the man himself to defend himself. Just remember that John is typical member of the thiomersal/autim connection. I of course am open to correction on that from other believers of the thiomersal/autism connection along with an explanation of why.

Also remember John is a fully ‘paid up’ Generation Rescue Rescue Angel and his views on _all_ the above should be taken as representative of that organisation, unless of course, anyone from that org would like to deny John’s involvement with them on record.

CDDS Data, Flu Vaccines And Likely Predictions

12 Apr

So, now that the cases of autism are _still_ not falling (see Joseph and Interverbal) and we long passed David Kirby’s self imposed deadline of 2005 for rates to fall and are fast approaching his new goalpost shifted deadline of 2007 what can we expect from the mercury militia?

Well, excuses as to why that might be of course. Re-alignments of data and misleading impressions. For example, Rick ‘Train Wrecks’ Rollens gave the Schafer Mercury Report an exclusive. Well – there was a whole lot of guff before the actual figures. These were quoted as:

Between April 2002 and April 2003 there were 3,595 persons added to the system. Between April 2003 and April 2004 there were 3,088 persons added to the system. Between April 2004 and April 2005 there were 3,015 persons added to the system. Between April 2005 and April 2006 there were 2,869 persons added to the system.

But, as ever, we can disregard Rollens as he hasn’t isolated the 3 – 5 year old cohort. He counted everyone.

In case you couldn’t tell, I rolled my eyes then.

For a slightly more honest approach (key word: slightly) we turn to David Kirby who posted the following on EoH:

2004 545 -4.72%, 2005 524 -3.85%

Which is the percentage change year on year. However, Kirby tucked his bombshell in the previous paragraph:

It is too early to read a whole lot into these numbers, especially quarter to quarter, and obviously, *a drop in the net gain this quarter (instead of an increase of 6) would have been more supportive of the thimerosal theory*.

EoH

Which is quite a statement. No wonder Rollens is fighting to distance himself from it. I also notice Lenny Schafer didn’t quote Kirby in the SAR.

However Kirby then goes on to tell everyone:

But yearly trends for 3-5 year olds are down…

Which is not true. Yearly trends are still rising. To put it plainly there is a continuing increase in the amount of autistic 3 – 5 year olds entering the CDDS reporting system. What these figures show (except this new quarter) is a less than 1% decrease in the rate of increase year on year. And David Kirby _knows_ this is misleading. In an email exchange with blogger Citizen Cain, Kirby:

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

Citizen Cain

More misleading dishonesty Mr Kirby?

So, what can we expect from the mercury militia clinging desperately to the CDDS figures?

So, there’s the misleading conclusions and re-alignments of data. What about the excuses?

Well the biggie will be one that’s touched on by Kirby in his EoH post:

keep in mind that most of these kids are 4 and 5 years old, born between 2000 and the first quarter of 2002 (someone correct me if I got that wrong) and it is impossible to know exactly what thimerosal exposure rates were during that period in California, except to assume that they started to come down, perhaps gradually

Aha – the first emergence of what I shall take honour in calling the Great Backpedal Argument of 2006. In the GBA, mercury militia members will start to claim that rates are not falling because all the thiomersal still sitting on shelves to be used up. Its a _great_ argument as it can’t be proven or disproven – you just have to believe. Sounds familiar eh? Then of course, there’s the compounding factor of the flu vaccine. Except that the flu vaccine is not mandatory, not enforceable and as vaccine uptake is falling generally thanks to the mercury militia I would imagine flu vaccine uptake (and thus thiomersal exposure from this source) is at an all time low.

So back to all the thiomersal containing mainstream vaccines sitting on shelves up and down the country.

According to studies, the shelf life of thiomersal containing vaccines such as DTaP is between 5 – 9 months. Somebody remind me again – how long ago was it that thiomersal containing vaccines were halted for mainstream use? I forget.

And if you do come across some thiomersal containing vaccines, maybe you could send some to Safe Minds Executive Director Sallie Bernard. It seems that they were in very short supply as far back ago as June 2001:

A group of university-based researchers needs several vials of the older DTaP vaccine formulations which contained thimerosal for a legitimate research study. If anyone knows an MD who might have some of these vaccines or knows where to get them, please email me privately. Thank you. Sallie Bernard, Executive Director, Safe Minds.

Onibasu.

Makes you wonder why Ms Bernard didn’t simply wander into any GP’s office and buy some thiomersal containing vaccine off the shelves almost collapsing under the weight of the stuff.

If it was in short enough supply for Ms Bernard to require the help of people finding some back in 2001, how plentiful is the supply going to be either than or now? I’ll wager ‘not very’.

No Nonsense from Joseph

11 Apr

Its that time of year again – quarterly release from CDDS.

Joseph was very quick off the mark with an analysis. I’m going to quote the main points, shut off comments here and point you straight to the source:

As we can see, CDDS autism caseload continues to have strong growth. There’s an unexpected increase in the caseload growth this quarter (what’s usually referred to as “New Cases” by mistake). The prior tendency was for population growth to stabilize. Annual growth (calculated against the corresponding quarter the year before) has dropped a bit, but it still has a long way to go before it matches population growth in the state of California, about 1%, as would be expected in the long run. There is strong growth in the 3-5 age range, which suggests there is no drop in administrative incidence.

Just as a reminder, the 3 – 5 cohort is the cohort that David Kirby agreed was the only one worth measuring.

Despite law changes (Lanterman Act, 2003) specifically aimed at decreasing caseload growth, it’s clear administrative prevalence will continue to increase for a long time to come, perhaps one more decade. Trends in the 3-5 age range do not support an incidence drop following removal of thimerosal from vaccines. I recommend Dr. Geier’s paper be renamed to “Upward Trends in Neurological Disorders Remain Strong Following Removal of Thimerosal from Vaccines” if the paper is to be salvaged in any way.

Indeed.

Meanwhile over on the EoH group, poster Lynn asked if anyone had analysed the new stats yet. From the ringing silence, I guess we can assume they have.

You can comment on this story over at Joseph’s blog.

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.

Upcoming Autism Conference

7 Apr

The Fifth Annual Meeting for Autism Research will shortly be going ahead in Montreal. There’s a few very interesting papers being discussed. Here’s a few abstracts:

No Autism Amongst Inuits From Northern Quebec?

_E. Fombonne, J. Morel, J. Macarthur_

*Background* : Autism has been found in most populations where it has been investigated. We have preliminary evidence that autism does not exist in the Inuit population of Northern Quebec

*Methods* : The authors know extensively the Inuit population (N=12,000) of Northern Quebec. They have been responsible for more than 15 years for pediatric care and special education in the 14 villages of this huge territory. There is a universal free health care and educational system, with repeated periodic medical examinations from birth onwards, compulsory attendance to school, and excellent medical/educational tracking record system for each child

*Results* : No case of autism was ever reported in an Inuit child in this population in the last 15 years. A computer search of discharge medical and psychiatric diagnoses failed to identify an ICD-9 diagnosis suggestive of autism or one of its variant. No case was referred for psychiatric evaluation or special educational assessment that would be consistent with autistic developmental impairments. In order to develop a full epidemiological enquiry, we have conducted a pilot study in 2 villages that demonstrated the feasibility of this planned investigation.

*Conclusion* : Autism appears to not exist amongst Inuits from Northern Quebec. If confirmed, it would have significant implications for the genetic understanding of autism. In addition, as Inuits are exposed through their fish-eating practices to high pre- and post-natal levels of mercury, it would also suggest that high mercury exposure in itself does not increase the risk of autism.

A STUDY OF MERCURY LEVELS IN YOUNG CHILDREN WITH AUTISM USING LABORATORY ANALYSIS OF HAIR SAMPLES

_P. G. Williams, J. Hersh, L. L. Sears_

Autism is a developmental disability characterized by severe, pervasive deficits in social interaction, communication and range of interests and activities. The neurobiologic basis of autism is well accepted, although the specific etiology is unknown. It has been theorized that autism may result from a combination of predisposing genes and environmental factors. While autism has a known association with some environmental factors such as rubella and valproic acid exposure in utero, other proposed environmental mechanisms such as mercury toxicity or other heavy metal exposure have limited research support. Despite this fact, interventions including oral chelation therapy are being used to treat autism after hair, blood or urine samples are analyzed by specialty laboratories. Controls and standards for these laboratories are often unclear with minimal data supporting differences in lab values for children with autism and typically developing children.

Hair samples were obtained from 14 children with autism and 16 controls between the ages of 2 and 6 years. These *samples were then sent to Doctors Data Lab* where mercury levels were reported. *The autism and control groups did not differ significantly in age or gender distribution*. Analysis of hair sample data by t-tests for equality of means and equal variance yielded *no significant difference in mercury levels for the two groups*. Despite the small sample size, results raise questions about the usefulness of evaluation for mercury exposure using hair samples, and about claims of mercury toxicity in children with autism.

BLOOD METAL CONCENTRATIONS IN THE CHARGE STUDY

_I. Hertz-Picciotto, P. G. Green, L. A. Croen, R. Hansen, P. Krakowiak_

*Background* : Adverse effects on neurodevelopment have been observed for lead and mercury. Previous reports of associations between body burdens of mercury and autism have been inconsistent or come from studies lacking rigorous quantitation of metals.

*Objectives* : To determine if blood levels of metals differ between children with versus without autism.

*Methods* : The CHARGE Study has been enrolling a population-based sample of 2-5 year old children with autism (AU), children with developmental delay (DD), and general population (GP) controls frequency matched on age, sex, and geographic region. Venous blood samples were drawn and metals were measured by inductively coupled plasma/mass spectrometry. Metals determinations were completed on 380 total children (261 AU, 40 DD, 79 GP). The AU cases were further divided into regressive (n=101) and early onset (n=119). ANOVA with unequal variances was used to compare means across groups.

*Results* : No significant difference in blood mercury was observed between the AU children (mercury mean±SD: 0.50±1.15 micrograms/dl) and either DD (0.41±0.51 micrograms/dl) or GP (0.51±0.74 micrograms/dl) children. Blood lead values were similar across AU, DD, and GP children (1.38, 1.30, 1.41 micrograms/dl, respectively). Similarly, children with a regressive trajectory versus early onset did not differ in their concentrations of circulating metals.

*Conclusions* : In 2-5 year olds, neither mercury nor lead concentration in peripheral blood of children with autism differs, on average, with that measured in population-based controls. Sponsors: NIEHS, EPA, M.I.N.D. Institute

M.I.N.D? Oh dear, what _will_ Rick Rollens have to say about that> _Thats_ not the result he paid to get!

In the meantime lets all look forward to the full release of these and the many other papers that will be presented.

*Update* Just noticed Autism Street has a similar post up.

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.

Open Letter To Andrew Wakefield

4 Apr

Dear Mr Wakefield,

Following your announcement of a link between the MMR vaccine and autism, uptake rates of this vaccine in the UK have fallen to amongst the lowest in Europe:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, this year, 18 months after this warning, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

I have a few questions for you Mr Wakefield.

Do you accept that there is a strong causative correlation between the falling MMR vaccine uptake and the rise in both mumps and measles? If you do not, could you please explain why not. If you do could you please explain what you feel is your role in these matters.

Is it true that, as reported by Brian Deer in the Times and in the Channel 4 current affairs programme ‘Dispatches’, that you received up to £55,000 to find scientific evidence of a link between MMR and autism and that you did not disclose you were being funded through solicitors seeking evidence to use against vaccine manufacturers?

Is it true that the vast majority of your subjects from the Lancet study were not, as you claimed, captured through the normal referral process, but actually supplied to you by lawyers representing these people and their families in vaccine litigation?

Is it true that up to nine months prior to the publication of your paper showing a link between the MMR vaccine and autism that you and the Royal Free (where you conducted your research) filed numerous patent applications which were alternatives to the MMR vaccine? If you did, would you consider it a lucky guess that led you to do this seeing as your MMR paper had yet to be published?

Do you believe, like your collaborator Hugh Fudenberg, that:

Some parents would rather see their kid die than live as a severely autistic.

Source.

These are serious matters Mr Wakefield. I’m aware that you are pursuing three court cases related to these matters (although at least one is currently stayed) and you are also due to be investigated by the GMC sometime this year but as the parent of an autistic child – in short exactly the sort of person you claim to want to help – I need answers now. What I read of you indicates wrong doing on a grand scale. If these things are established to be true you are guilty of not only extreme medical negligence but also of betraying thousands of parents and forcing thousands of autistic children to undergo totally unnecessary and highly invasive medical procedures.

You need to account for yourself Mr Wakefield. Please don’t wait for more children to be hospitalised or die.

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