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Its The Mercury, Stupid! No Wait!

9 Aug

I predicted not long ago that we’d shortly begin to witness a move away from thiomersal/mercury language from the geniuses in the mercury militia due the ongoing science refuting the hypothesis and the total rejection of the accumulated body of science so far built to support the hypothesis.

Every quarter, as long term members of this debacle will know, California DDS release a set of figures that are used to indicate how many autistic people are receiving services in that State. These numbers have been hailed at various times and by various people from the mercury militia as ‘the gold standard’ or ‘incontravertible proof’ that thiomersal causes autism as the numbers seemed to rise in the latter part of the nineties when thiomersal was around and then drop when it was removed. In actual fact, this belief came about due to a total misunderstanding of the numbers. The numbers have never dropped. All that happened at some points was that the _rate of increase_ either dipped or rose. Especially in the core cohort of 3 – 5 year olds.

For more on this see Joseph’s excellent summation.

In short, CDDS numbers continue to rise in the age group that would show a dramatic drop if thiomersal was the culprit.

The last two quarters have seen ‘rises’ in the rate of increase and where once there was excited bandying about of this ‘proof’ we now have the embarrased silence of no dogs barking.

And yet….deep in the recesses of Anti-Vaccine Central aka The Evidence of Harm Yahoo Group….someone had the bad taste to mention this recently. The response was swift, predictable and as stupid as a celebrity reality TV contestant.

Yes, and I do believe that we need to look at ALL environmental factors, and not just mercury, including other vaccine components, the antigens themselves, the cross-reactivity of various vaccines, the timing of vaccine administration, environmental sources of mercury, the overuse of antibiotics, pesticides, pitocin, ultrasound (I have noticed some listmates stating that their NT kids had just as much ultrasound exposure as their ASD child and they’re fine — careful, that’s what the parents of NT kids say about vaccines!) and electromagnetic radiation.

You factor in all of the new vaccine recommendations over the last four years and there are plenty of things that could muddy the waters here. Not to mention live attenuated virus vaccines,

But…but…didn’t these people get the message from Rick Rollens that:

Decline [in CDDS data] coincides with the phasing out of mercury from childhood vaccines.

Yes I know there wasn’t really a decline but they believed it. They touted it as fact.

How about David Kirby’s ‘Gold Standard‘>

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

So, now that we know that _they never dropped_ is the opposite ‘practically undeniable’?

Let’s not forget what David Kirby told 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

What shape will that ‘severe blow’ take do you think? Will it be a full and frank admission from Mr Kirby that he maybe should’ve asked around outside of the circle of geniuses headed by Rollens regarding prevalence in CDDS data? That maybe he’s jumped the gun quite substantially? Will we see retractions from Brad Handley and Generation Rescue who might have to redefine their incredibly simplistic, premature and wilfully misleading categorisation of autism? Will we get some injection related sense out of more than a few people? Will Moms Against Mercury rename themselves? How about SafeMinds?

What does Lenny Schafer think? In recent years, the SAR has become little more than an anti-thiomersal polemic. What does he say about all this as the Moderator of the EoH group?

The fact is that if the problem is mercury and mercury has been greatly reduced in vaccines, we should see numbers either dropping, or the rate of increase dropping. Maybe the later is true, I can’t tell from this one chart alone. These reports have always come with caveats about how they are not properly controlled for a variety of factors that could affect the actuals, like the CDC recommendations for mercury flu shots or their aggressive push for early (and more) diagnosis. We (not just Christine) can’t one day point to these numbers and say: “see, they support the mercury hypothesis” when it suit us, and then later say “you really can’t trust these numbers” when they don’t.

At least a nod towards honesty. But he needs to understand why Kirby is correct to say that it is numbers dropping that’s important not changes in the rate of increase.

Slowly but surely these people are moving towards a position of wholesale anti-vaccination. Of course, its been there all along, but as the veneer of credibility the thiomersal hypothesis had when we lacked data is stripped away so is the thin veneer that reveals the depths of their ignorance.

When they finally abandon thiomersal, never forget their adamancy that it was thiomersal. Never forget that their ‘common sense’ trumped their ability to see what was under their noses. Thiomersal is a neuropoison QED, thiomersal causes autism. That’s the sort of logic that resulted in their recent spectacular own goal of the US Senate refusing point blank to put vaccine specific language in the recent Combating Autism Act. Wake up geniuses: They don’t trust you because you’re zealots. Your future is plain to see for them and me. Thiomersal to aluminium, aluminium to live virus, live virus to some other vaccine related ingredient. That’s why the ASA, CAN, Autism Speaks etc were happy to ditch the vaccine language. They want to distance themselves from you. Is it any wonder?

Welcome to EoH visitors! I see you have an amusing long thread where you all talk about how unbothered you are about me – with *lots* of contributions from various familiar faces. I would like to correct one small point you seem to have picked up: There is only one side of this that believe that the Illuminati is involved or even actually exist: That is your side. As represented by John Scudamore (owner of whale.to) and Dr David Ayoub of FAIR Autism Media. Hope thats clear enough for you to grasp :o)

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.

Lenny Schafer’s Cognitive Dissonance

27 Mar

Another day, another Schafer Mercury Report.

Lenny has a dig at the recently published Afzal et al paper ‘Absence of detectable measles virus genome sequence in blood of autistic children who have had their MMR vaccination during the routine childhood immunization schedule of UK’:

It is hard to understand why the authors claim that their study of MMR virus in the blood “failed to substantiate” the reports by Andrew Wakefield, and by now any other researchers — that they found the MMR virus in gut biopsy samples from autistic children.It is obviously far easier to collect blood samples than to collect biopsy samples from the GI tract, which is an invasive procedure with risks. If blood were a suitable source to look for the MMR virus, Wakefield would have used blood in his study

I have no doubt it _is_ hard for Mr Scahfer to understand. It was hard for me to understand too. So I asked someone.

…measles is a lymphotropic virus, even more so for the vaccine strain which has been selected to exploit the CD46 cellular receptor. If there is a persistent MV infection the most logical place to detect it is in cells that it is most adept at infecting. Lymphocytes

Lymphocytes are a type of blood cell. Of course, given that, Lenny’s question re: Wakefield becomes unintentionally hilarious:

If blood were a suitable source to look for the MMR virus, Wakefield would have used blood in his study

Only if it occurred to him Lenny, only if it occurred to him.

Simple translation: Yes, this new study does not replicate Wakefield examining the gut. This is because there’s no need to. Blood cells are more likely to show infection than the gut. If Wakefield or Bradstreet wanted to make a special case for the gut then they failed to do so.

Interestingly, Afzal et al approached both Wakefield and Bradstreet to collect samples of the tissue they collected but they never responded to the request:

The groups of investigators that either had access to original autism specimens or investigated them later for measles virus detection were invited to take part in the study but failed to respond. Similarly, it was not possible to obtain clinical specimens of autism cases from these investigators for independent investigations.

Cynic that I am, I have to wonder why. Too busy to ask a research assistant to locate, package up and send off some samples? Or maybe too worried about what a decent scientist would reveal.

Amusingly, Lenny next attacks Parental Perspectives on the Causes of an Autism Spectrum Disorder in their
Children
which recently reported that a low percentage of parents blamed their childs autism on vaccines:

This immense undertaking involved collecting questionnaires from a grand total of 41 parents! It is remarkable that as many as 16 of the respondents said vaccines are a cause of autism. How many questionnaires were given to parents who simply discarded them, knowing that a survey conducted by a University Department of Medical Genetics has little interest in learning what parents think about the role of vaccines in causing autism?

Can anyone remind me again how many kids were involved in the original Wakefield paper? Was it 41? No? 20? No?

Twelve?

Twelve.

Lets also not forget that another recent study looked at what treatment options parents were pursuing. Only 7% were pursuing detoxification (chelation etc). That was from a total of 552 returns.

Lenny seems disturbed that he is part of a minority. I’d advise him to get used to that feeling. As decent science like Afzal et al continues to refute the poor science that precedes it, people like Lenny will become more and more isolated.

Compare The Rhetoric

15 Sep

Its no secret. I’m firmly of the opinion that Lenny Schafer is a borderline bigot. He recently wrote an open letter to his Evidence of Harm list mates which I repeat below:

I should like to provide a summary to this encirculing (sic) discussion. The autistics condemnation of those who seek a cure for autism rely on two rhetorical devices to do so. First, is their special, cultural and vague definition of autism. The other is a cynical definition of “cure”. The autistic movement indeed condemns parents who do not agree with their creed. They have joined legal efforts to restrict the funding of ABA programs in Canada and often engage the media to attack parents who seek cures for their children.

Let there be no mistaking it, the “don’t cure autism” rhetoric is little more than a vehicle for parent bashing. This is both irrational and unjust. It may not be Stephen Shore’s intent to condemn anyone, but the movement for which he attempts to apologizes for does; it is not so easy to weasel away one’s personal support of such efforts with platitudes about helping people. This is not just about honest differences of opinion; this is about a creed who intends to interfere with the quest of parents to relieve their children from the misery of clinical autism.

Its the same old stuff from Schafer. Clinical autism. Yeah. Parent bashing. Right. He acts out of fear and a closed mind. By contrast, here’s a recent post from Wade Rankin. Its a long post which needs to be read in full but the last two paragraphs spoke to me:

In the biomedical community, we often throw around the word “cure.” When I use that word, I know what I mean and most other people who practice biomedical know what I mean. We are seeking to alleviate the dysfunctional aspects of ASD in our children. We will never alter the genetic makeup of our children, and to the extent genes make them autistic, they will remain autistic. I can live with that. But I believe that one or more environmental insults has acted in concert with my son’s genetic makeup to create stumbling blocks that keep him from using all of this gifts. I cannot believe I am wrong in trying to reduce the effects of those environmental insults.

On the other hand, when I am confronted with the eloquence of Kathleen Seidel or the extraordinary testimony of an adult with autism who wants no “cure,” I have to realize that the issues surrounding ASD are not easily addressed by one-size-fits-all answers. Could the “cure” we seek help other people who reject biomedical interventions? Perhaps, but that’s not a necessary given. More importantly, that’s not my choice to make.

Wade Rankin.

How refreshing. Someone at least prepared to question and look. I know I’ve thought differently of some of the people involved in the Biomedical camp since encountering Wade online. I don’t agree with his use of the word ‘cure’ and I wonder if he were autistic himself whether or not he would see enough of his behaviour as dysfunctional enough to _require_ a cure but I also believe he acts out of a genuine desire to help his children. I genuinely do not know what desires move a man like Lenny Schafer. All I know that reading what he writes is like feeling a cold wind on one’s spine. He’s become the poster boy for intolerance.

The best thing about Wade is that he is obviously a man who understands the power that words carry. Unlike Schafer who uses his words as a blunt weapon, Wade is often reflective to the point of hesitancy when trying to explain his thoughts. Its so refreshing to hear someone from the Biomed camp describe gettingthetruthout.org as ‘extraordinary’. I shudder to think what Schafer would describe that site as and I genuinely have no desire to hear his thoughts on the matter.

The Evidence of Harm maillist recently ‘outed’ Orac. They published his real name, contact info including tel number on EoH. Various hangers on repeated the information on their own sites. Schafer did nothing to prevent this although he recently become apoplectic when Jerry Newport of AutAdvo apparently did the same to him. maybe he thought it was just revenge.

However, a lot of EoH members protested this stupidity and questioned the motives of the EoH attack dogs like Ashleigh Anderson, who did the ‘outing’. A few people left expressing disgust with what the list had become.

EoH maillist is crumbling. I hope when it does crumble that out of the rubble steps a man like Wade to create a group that is capable of thinking instead of blindly lashing out. He is an honourable man with honourable intent. A lot of people on EoH would benefit from a leader less prone to bigotry and more prone to reflection. I sincerely hope they get it.

Lenny Schafer Part IV: FAQtually Incorrect

7 Sep

Recently, Lenny Schafer made a post to the Evidence of Harm (EoH) maillist in which he helpfully prepared a FAQ on the NeuroDiversity movement. Unfortunately, he made several errors as one would expect from someone uninterested in accuracy and more interested in scoring points. I’ll seek to address them here. Please bear in mind that these are _my_ views of Neurodiversity. I’m not a spokesman, these are _my_ opinions having been ‘part’ of the Neurodiversity movement ever since my daughters needs and Mr Shafers bigotry drove me to become vocal.

How is “neuro” in NeuroDiversity (ND) defined medically?

It is not clinically, measurably defined. It would appear to self- apply to people who display neurologically based behavior that deviates from the norm (the NeuroTypical), but mostly applies to those who are high functioning. It mostly does not include those whose behavior is disabling as the result of treatable or curable medical disorder or disease.

1) It does not mostly apply to the ‘high functioning’ except insofar as that group so far make up the majority of ‘members’. Members of the Neurodiversity movement consider everyone, regardless of level of functionality to be diverse and to be valued as such.

2) It most certainly does include those ‘whose behaviour is disabling’. The belittling and lessening of the impact of those autistics who are not classed as ‘low functioning’ by Mr Schafer is both well documented and incorrect from a moral and medical perspective.

How does autism fit in?

ND campaigners promote a revised definition of autism that includes most high-functioning neuro-diverse behavior, regardless of actual diagnosis. However, its embrace excludes extreme disabling behaviors that are a result of medical pathology or developmental disorders. This ironically would exclude clinical autism, while including most of the rest of the autism spectrum, and any other-than-neurotypical high function behavior. This autism is a natural part of the normal
neurological landscape, is their argument. To treat or attempt to remedy that which is only different, but not pathological, is seen as a demeaning, if not a bigoted diminishing of the intended victim’s humanity. We can for the moment call this “autism-oranges”, to distinguish it from clinical autism, which we’ll call “autism-apples”.

But clinical autism, autism-apples, is not disabling as a result of social oppression and intolerance, although such attitudes certainly can add to it. Here autism is defined and measured by functional disability. Seeking remedy to the disabilities of autism is no more immoral than the desire to have the blind’s vision returned.

Autism-oranges excludes functional disability. Behavioral “differences” do not require remedial treatment and cures, only
acceptance and assistance.

Autism-apples is clinically defined by disability (DSM-IV). Treatment that leads to the restoration of ability is a rational and moral goal. Such treatment may also include social acceptance and assistance.

The NDs do not always acknowledge that their definition of autism has components opposite to the clinical definition. This definition shell game is employed to convert parents who express a humane desire to alleviate their children’s disability, autism-apples, into heartless, selfish intolerant monsters whose bigotry keeps them from accepting their children for who they are: autistic-oranges.

1) ‘ND’ proponents do not ‘promote a revised definition of autism’. In fact they promote the factual definition of autism as defined by various diagnostic criteria. Schafer – as ever – tries to make two things out of what is one – autism is autism.

2) Its embrace does not exclude anyone whos neurology differs from ‘the norm’. Including what Schafer refers to as ‘clinical autism’ by which he probably means ‘classical’ or Kanners autism.

3) What Schafer refers to as medical pathologies are probably what the medical world calls ‘comorbidities’ – these being the non-standard behaviours/conditions that sometimes occur to autistics such as lack of speech or ADHD or gastric problems. These things do not indicate a separate type of autism as they form no part of any diagnostic criteria. This is because they cannot be used to define or diagnose autism because they do not occur to all autistics unlike the differences covered by the triad of differences. Proponents of neurodiversity both accept and promote humane and non-dangerous methods of treatment to aid autistics in their struggle with their sometime very debilitating comorbidities. Out of the two communities (neurodiversity and the Schafer represented community) neither group states that treating comorbidities is unacceptable and only one seeks to repeat that error as fact.

4) Proponents of Neurodiversity have never, to my knowledge, labeled anyone as heartless for trying to alleviate the disabling comorbidities that their children may have. As a parent myself whos classically autistic daughter undergoes PECS and speech therapy I’ve never been castigated as ‘selfish’ or ‘a selfish intolerant monster’. On the other hand, I have been told by some parents who support Mr Schafer’s position, some of who are members of the EoH list, some of whom are Rescue Angels and some of whom identify with the goals of these groups that I and parents like me are child abusers, that may daughter is ‘a retard’ who should be ‘put down’, that I am scum, that I am an idiot, that I am stupid, that I have a psychological disorder, that I am evil, that I will go to hell, that I am a cunt, that I can ‘go fuck myself’, that I should ‘sit next to the nearest Arab with a rucksack’ (which I assume is a racist based wish that I become victim to a suicide bomber), that I am in the pay of ‘Big Pharma’, that I part of a loose association of lawyers protecting the interests of Pharma companies’…I could go on. I get lots of hate mail. Most of it comes from people with incredibly similar writing styles to those who populate the EoH maillist. My blog has been signed up to porn spam, corporate spam, software spam and at least three people have attempted to perform DOS (denial of service) attacks on my site.

What is the ND Agenda?

The group vitriol against parents is so pronounced, I find it difficult to believe that it is the welfare of my child that is at the
core of their agenda. Altruism has no such rage. I suspect we are but stand-in proxies for their own parents who they may hold responsible for bringing them into such an unfriendly world for autistic-oranges. The agenda seems more about revenge, than reform.

1) Even if that were true (which I can assure you it is not) how does one explain the many *parents* who believe in and follow the Neurodiversity credo? I can think of at least 10 parents who post comments to this blog who do not wish to treat their kids with dangerous treatments and who wish the world to change for the better of their kids rather than meekly accepting the worlds intolerance for the sort of people our kids are.

Overall Mr Schafer, your FAQ was not a FAQ but a ‘FAQ on a mission’. You again promote your singular and totally unsubstantiated and error strewn definition of autism and then expect everything else to fall from that.

Recently, people with more tolerance and wisdom than you have attempted to find ways to reconcile neurodiversity and biomed proponents. These people seem to have no axe to grind, no diagnostic criteria to mangle and no politics to push. I would strongly suggest you step back and allow them to have their time. Your group is evolving into places you cannot seem to go.

The Autistics Are Coming!! Oh Dear God!!!

3 Jul

If you search for anything related to autism you always come across parent/family led groups who describe autism in increasingly demonic terms. It used to be that someone was simply autistic but nowadays we have the ‘hell’ of autism or the ‘abyss’ of autism being used to attach negative emotion to autism.

Nowhere is this more apparent than when social commenters talk about the autism epidemic. This ‘epidemic’ revolves around the idea that 1 in 166 kids in America are autistic and of course, epidemic is just another emotive word tool designed to elicit the maximum amount of scare-mongering from people.

Every so often the ‘ante’ is upped and another emotive word tool is used that is more fear-mongering than before. One such idiotic phrase coined after 26th Dec 2004 was ‘autism tsunami’. In a breath taking lack of respect for the 200,000 dead and an even more breath taking lack of respect for autistics themselves, autism was portrayed as a phenomenom equal to that which killed nearly a quarter of a million people. I wonder how the families of those who lost loved ones on Boxing Day felt about that comparison?

Very recently that ante has been upped again. From terrible yet local natural disasters to pure human evil. In a mind bogglingly tasteless recent Schafer Autism Report, the man himself said that:

Autism holocaust deniers lack the science.

This was made in reference to the Danish study that debunked the link between Thimerosal and autism. I haven’t read the article itself but this incredible reference left me open mouthed. Apparently we who follow the science on this issue are akin to holocaust deniers. Thats right – we’re apparently the same as some snivelling little shit with a skinhead, Docs and a swastika tattoed on their imbecilic skulls. Wow, thanks Lenny. I can see how you could easily draw a comparion between those who don’t believe you’re right about the thimerosal/autism link and the Nazi genocide of over 6 million people. Jesus fucking Christ man – get a sense of perspective. How utterly disrespectful to the memories of those who died in the Second World War than to have some jumped up little man sully the concept of free speech with appalling comparisons to those people who veterans all over the free world died to save us all from.

But then we’re dealing with the same loose affiliation of people who label autistic people as mad or fakers or who think their best chance for a cure lies with a quack with some sun cream that cures autism, old age and cancer.

Oh and the autism epidemic? I think you might want to have a read of this.

Lenny Schafer Part III: Desperation?

14 Apr

Mr Schafer’s continuing campaign to drive a wedge between classic (Kanners) autism and Aspergers Syndrome continues apace. However, those of us who are afficionado’s of Mr Schafers note an increasing use of modified language coupled with more disingenuous ploys. In his latest report he says (and remember the overall goal here is discrediting the link between AS and Kanners autism):

Presently, anyone with a mental disorder can label themselves as “autistic”, presumably to avoid whatever stigma attached to their actual particular diagnosis. Who is to know otherwise who is really autistic? The differential diagnoses in these areas can be quite difficult for the experts (let alone for any amateur.)

Which is all very true but why is he saying it? I could call myself an elephant if I wish but it doesn’t make me one. The ‘who is to know who is really autistic’ line is patently a dig at the autistics who have challenged Mr Schafer but who have refused to publish their private medical diagnosis’ on the internet for his personal approval. Yes, anyone can call themselves autistic and I’ve no doubt that some who claim autism aren’t really autistic, just as some who claim some kind of expert knowledge on diagnostic criteria are also patently inexpert, but really there are bad apples everywhere in every social setting. Attempting to write off an entire section of society as part of a group of decievers is as facile as it is incorrect.

We are starting to witness ugly sociopath and sometimes violent behavior from people who claim to be “autistic”. They display behaviors that have little similarity to any disorder on the spectrum, Asperger’s or autism. The immediate source of concern from myself and other parents over the proper use of spectrum labels is our witnessingn of some of these self-diagnosed “autistics” banding together for political advocacy.

Sounds scary huh? Well, maybe it would if it was representative. First Mr Schafer rolls out his patented ‘Remote Diagnostic’ machine and decides everyone is sociopathic. He then immediately links that very emotive, intimidating and wrongly used word with a group of people who, at worst, disagree with him. I’m in no doubt that Mr Schafer has been on the recieving end of some threats and abuse by some people – some of whom may be autistic, some of whom may not – but the point is this: Mr Schafer is blatantly and quite shamefully attempting to make political gain out of this by associating this almost certainly tiny idiotic minority with the larger advocacy movement. He also interestingly makes a blanket statement regarding how ‘other parents’ are concerned. Well, I’m not. I think the autistics (and yes, Mr Schafer, they are, by every criteria you care to nuzzle at, autistic) have the spectrum labels pretty much spot on – as do every important autism researcher on the planet. The only people who don’t are the CAN/GR/MMR/Epidemic apologists who refute scientific evidence with their own increasingly irrelevant and error-strewn theories.

The thrust of their advocacy is to redefine autism as not being a disability, but rather a lifestyle that society should learn to accommodate and not treat or “fix”. They have already had some success at this in the media, to our horror.

A lifestyle? Deary me, Mr Schafer, if I were a lesser man I would feel myself getting quite annoyed at your patronising, wilfully ignorant stance. I’ve never spoken to any autistics either in person or online who have tried to promote their autism as a lifestyle choice. Yes, they promote acceptance – do you ever wonder why it is that you do not? Yes, they also turn away in horror at the idea of a cure. They are autistic, they are who they are and you want to find a way to stop them being who they are. I find it bewlidering that you can’t see that people would be upset by that – your attitude smacks of those who used to treat Emily Pankhursts supporters as insane and commit them.

I’m personally glad to witness the success they’ve had as it mirrors my own beliefs that society should be more tolerant and accepting of difference (the drive to eradicate what we don’t understand immediately is something I’d imagned long dead in the West’s colonial past) and I think your gross and I suspect deliberate misrepresentation of autism as a lifestyle choice and your further association of those who disagree with you as purveyors of that choice is arrogant, misrepresentative…and a little bit desperate.

No one had problems with anyone on the spectrum calling themselves “autistic” before these exploiters started to take advantage of our loose usage of the term. This is what is behind our fears. Their efforts to make everyone and themselves feel better about autism by redefining it innocuous will come at the expense of everyone on the spectrum

Yet again, more misrepresentation – I’ve never heard any autistic speak of autism as innocuous. A simple look at sites such as autistics.org reveal people who suffer greatly with some of their comorbid conditions or whos autism has led them through struggles that would reduce Mr Schafer to well, maybe appreciate their view a little more? Yet, they refuse to be defined by their struggles and wish to be proud of who they are. They don’t wish to make other autistics feel better by redefining it as innocuous, they wish to make other autistics feel better by standing up and being heard in the face of what is becoming an increasingly desperate and deliberate demonisation and belittling by people who know they are losing the argument.

Lenny Schafer Part II: A Masterclass In Misinformation

29 Mar

You have to hand it to Mr Schafer. As a dealer in misinformation and alarmist tactics he’s second to none. Oh sure, he occassionaly lapses into a more open view of what he really thinks of people with autism:

those who would define Aspergers or autism as little more than an odd-ball minority lifestyle made up of ‘geeks’ and savants with ticks doing tricks……the very real, if not romantic ‘culture of autism’ in which anyone who taps a pencil can opt themselves in as a member.

But most of the time he’s actually very good at how he spins his misinformation. If Alistair Campbell or Karl Rove ever need a stand in, I’d be happy to write Mr Schafer a glowing recommendation. Here’s part of a response he wrote to a woman asking for his ideas on who has the final say on how autism as a spectrum disorder is classified:

There are eight established Asperger’s care and advocacy groups on the east coast with good community reputations who refer to themselves as autism organizations, despite clinical Asperger’s being different from clinical autism. Why would such groups seem to go out of their way to confuse the public so? By referring to Asperger’s as autism, it helps paint Asperger’s as a serious disorder, which is understandable. But it also trivializes autism, making it appear to be less serious than it is. Those self-described autistic people who demand that autism not be cured or treated highlight the threat this blurring presents to people who really have autism.

Wow! Now, concentrate hard here because there’s so much spin and misinformation going on here that its easy to miss the true genius of Mr Schafers abilities in misinformation. Lets take them one by one.

First, the biggie – “despite clinical Asperger’s being different from clinical autism”. Lets just stand back and admire that for awhile. Until recently, Mr Schafer hasn’t used the word ‘clinical’ in his reports at all. His line has been that Aspergers is not autism – end of story. Obviously the constant chip chip chipping away from autistic advocacy groups has rendered Mr Schafer more ammenable to using more appropriate language. However, through the clever use of this phrase he makes it appear that he’s maintaining the exact same position – well done Sir!

Unfortunately there are serious flaws with even this statement. First of all, Mr Schafer is not to the best of my knowledge, a diagnostician except of the armchair variety and hence any interpretation of diagnostic criteria on his part should be viewed with at best, healthy scepticism. Secondly and more substantively, a lot of properly accredited and qualified autism researchers and clinicians are very unhappy with the recent change in the diagnostic criteria that leads Mr Schafer to be able to make his statement at all.

The diagnostic criteria in the DSM, which provide a differentiation between autism and Asperger’s syndrome, have been examined by several research studies over the last five years. There has been some criticism from clinicians and research that the criteria do not identify the disorder Hans Asperger originally described. The four cases he described in his original paper would be diagnosed, according to DSM criteria, as having autism not Asperger’s syndrome. (Miller and Ozonoff 1997). If one was to use the DSM criteria, Asperger’s syndrome would be a very rare condition.

Dr Tony Attwood

Which is to say, that yes, Mr Schafer is correct, there is a difference between clinical autism and clinical Aspergers but that it only exists through the reclassification of Aspergers into something that was not described by the man who first classified Aspergers Syndrome. A disengenuous solution ingeniously expoited by the ever-ready Mr Schafer. After all, as he himself says:

Some experts have problems with these definitions, and who is to say they’re wrong. It’s just the only standard out there for defining the labels. The fuzzier the labels are, the more room there is for mischief.

You cheeky scamp Mr Schafer! Next you’ll be telling us that Aspergers and autism don’t fall under the exact same set of Pervasive Development Disorders or Autisitc (note that word!) Spectrum Disorders however I suspect that seeing as, at bottom, both Kanners autism and Aspergers syndrome actually do depend on the same set of basic differences you’ll be scuppered. Bad luck.

Next up is Mr Schafers statement that:

By referring to Asperger’s as autism, it helps paint Asperger’s as a serious disorder, which is understandable. But it also trivializes autism, making it appear to be less serious than it is…

Mr Schafer cleverly omits telling us who exactly would be ‘trivialised’ by this painting of Aspergers as a serious disorder. Mainly as one suspects not many people would be. The truth, as experienced by numerous people on both flavours of the spectrum, is that both are pretty serious. It does make one wonder why Mr Schafer is quite so determined to seperate Aspergers and autism, despite medical data stretching back decades that quite baldly and repeatedly states they are linked. I personally have to come to the conclusion that he is growing ever more concerned at the growing amount of people within the actual autistic movement (i.e. autistics and their parents) who challenge his misinformation and spin in growing numbers and with growing confidence to share the truth – if he can seperate the two then he can dismiss the Aspergers autistics as irrelvant to his push for a cure. It must be deeply irritating that there simply is no evidence to support his position of seperation.

Next, Mr Schafer goes over his position once more:

Those self-described autistic people who demand that autism not be cured or treated highlight the threat this blurring presents to people who really have autism.

Ahh, a masterstroke: using the traditional scare tactic and doubling the scare factor by making it an unfounded, unsubstantiated and medically incorrect statement! Truly in the annals of spin and misdirection Mr Schafer is a magician. ‘Self-described’ people indeed – genius! Or it would be if these autistics actually were ‘self-described’. Unfortunately the evidence is, at best, out on this issue and very very likely to indicate the exact opposite. Far from being ‘self-described’ these people are actually merely circumspect with their private medical data. Ironically, the only person who seems to make a habit of off-the-cuff diagnosis is (drum roll…) Mr Schafer. In fact, he’s so good he can even make off-the-cuff diagnosis of people over the internet! Surely I can’t be the only one simply amazed that diagnosticians are not clamouring at Mr Schafers door to learn the secrets of his (no doubt patented) Automatic Autism Judger.

Sadly Mr Schafer’s spin cannot stand up to the rigorous process of ‘checking for oneself’. Upon undertaking this process one discovers that (gasp!) no autistics claim to not want any treatment (or at least the ones I’ve spoken to anyway). They do ask that society treats them with enough respect that they are not labelled as part of a ‘disease’ or ‘ticks with tricks’ or ‘an odd-ball minority lifestyle made up of ‘geeks’ and savants’ or that they can reach a position where people respect them for their difference instead of trying to cure the incurable. But treatment? Oh yes, autistics ask for that. They are fully aware of when they need help and under what circumstances our role as supportive parents can make life easier.

Mr Schafer is also a staunch opponent of the opinion that the rise in autism rates can be attributed to better detection and diagnostic criteria. He says:

It was the new criteria for autism defined in the DSM IV that was the impetuous for the charges of the autism epidemic being
an illusory artifact of different diagnosing. In other words, this argues that there has always been an autism rate of 1 to 166 and only now because of the new definitions it appears to be a big increase. This is ridiculous because it would mean that there are still hidden hoards of autistic people from before the new definitions still walking around un-or-misdiagnosed.

You have to admire the tone, the authority it all sounds so commanding doesn’t it? It almost sounds like he knows what he’s talking about. Almost. Mr Schafers view that its ‘ridiculous’ to assign the autism ‘epidemic’ to better diagnostics is addressed by medical experts – people who actually do know what they’re talking about and who are also experts in the field of early detection of ASD:

However, the signs of Asperger’s syndrome in very young children may be more subtle and easily camouflaged at home and school. On reflection, parents (especially mothers) and teachers have often been concerned about some aspects of the child’s cognitive development, in particular their social reasoning, but their concerns may have been intuitive, and difficult to describe to clinicians. It is not until the child is expected to show more advanced cognitive abilities that formal assessments indicate significant
delay

Dr Tony Attwood

So, when Mr Schafer, a non-entity in the field of medical diagnosis, calls the idea of ‘hidden hordes’ of people walking around ‘ridiculous’, a world renowned expert on ASD and diagnostic criteria says that its not only very likely its actually a feature of the very type of autism Mr Schafer is so intent on denying. Not irony exactly but still a bit pithy.

So whilst we have to admire Mr Schafers increasing attempts at spinning the data we have to deduct marks for the ease of refutation.

This post does have a serious point. Mr Schafer has made his position clear. He will do anything to further his aims. This includes deliberate attempts to mould the facts to meet his version of the truth and misrepresenting an entire group of people. Speaking as the parent of an autistic child diagnosed with severe classic Kanners autism I say for the record that I neither trust him nor appreciate his attempts at wilful misleading of parents. If he had any decency he’d at least retract or admit to the inaccuracies in his beliefs. I doubt he will though and more parents will join the queue to rid the world of their children.

All quotes from Mr Schafer found on Yahoo Groups.

Autism, Misinformation and Lenny Schafer

3 Feb

You may or may not have heard of Lenny Schafer. He runs the Schafer Autism Report – an email digest which collects news stories related to ASD’s and comments on them. He’s staunchly pro-cure.

At the moment, he’s the darling of a wide range of parents who have autistic children who also believe they want a cure for their children.

This puts him firmly in opposition to groups such as autisitics.org who are a group of people on the spectrum who do not wish to be cured. They claim that a cure is tantamount to ‘killing’ them in terms of who they are. An ASD is so deeply part of who they are that they claim to remove or attempt to remove it is effectively removing their individuality. They do not see an ASD as an illness to be cured, more a (different) reality to be experienced.

These two groups are in frequent collision with each other. The group at autistics.org say that for parents to wish to cure their children is a basic denial of their childrens human rights to be who they are. The group vocally represented by Lenny Schafer say that to deny their children the possibility of a cure (should one ever exist) denies them the right to participate fully in life.

Both views, on the face of it, have some merit. They’re both definitely born out of a desire to do the best thing for autistic people. However, look past the surface legitimacy of the Schafer led group and you see a loose conglomeration of alarmists using very questionable tactics.

The first tactic the Schafer group uses is to say that as parents they are the only ones allowed to speak for their childrern. This is true up to a point. I certainly feel that as my daughters advocates, my wife and I are best placed to say what is best for Megan. However, lets not forget that Megan (or any autistic person) is not ill. What they have is part of them in the same way that I am right handed and dark-haired. In terms of speaking for my daughter on issues to do with autistics life experiences, the group at autistics.org are vastly better placed then me to represent her. Why? Because they, like her, are on the autistic spectrum.

One of the most obvious things about any child is that they grow up. They grow up and develop a sense of who they are and like any person affiliate themselves to particular viewpoints and opinions (politics, football teams, human rights etc). As they do this who are we to decide that who they are is something we as non-autistics are entitled to cure? I’ve spoken to a lot of autistics both in person and online and I can honestly say I have never met any who wish to be ‘cured’. The wish for a cure seems to be the sole province of non-autistics.

This brings me neatly on to the second tactic, Schafer et al employ. They claim that those at austics.org and the other groups associated with them are comprised of individuals who aren’t actually autistic. This claim rests of on two points. Firstly, they say that some people within these groups are not on the spectrum whatsoever. To prove this they ask to see the official diagnosis of the group members. As far as I know, no one from the group opposing a cure has provided details of their diagnosis and why the hell should they? A persons medical diagnosis is their own private business. It speaks volumes about the depths that Schafers group is prepared to sink to if they consider that publishing one’s private medical business or forwarding it to anyone else is an acceptable rebuttal. Secondly, they claim that of those people at the autistics.org group who are on the spectrum, most of them are high functioning and/or Aspergers. Why is this an important distinction? Well because they back up this by claiming that those who are high functioning cannot possibly empathise with those who have a more severe form of autism (note how they seem to feel that they as non-autisitics they can empathise with their childrens autism). Schafer himself has undertaken a bizarre campaign to actually remove Aspergers Syndrome from the ‘list’ of syndromes that the phrase ASD covers. Do any leading theorists in the field of ASD believe Schafers claims that Aspergers is not an ASD?

Professor Simon Baron Cohen (Professor of Developmental Psychopathology and Director of the Autism Research Centre at Cambridge University. Fellow of Trinity College, Cambridge) certainly doesn’t seem to feel this. In a letter to Aspies For Freedom Professor Baron Cohen states:

As you may know, I was one of the first to write in the scientific literature that autism and asperger syndrome could be viewed not as a disability but as a difference. That was some 5 years ago.

What about Dr Tony Attwood (Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey, and Ph.D. from the University of London). He says:

Dr Hans Asperger, an Austrian paediatrician, originally described Asperger’s Syndrome in 1944. The syndrome has more recently been classified as an autistic spectrum disorder.

Also in a letter to the afore mentioed Aspies For Freedom, Dr Attwood states:

Thank you for your message and I share your concern with regard to the zealous way in which some people would want to cure autism. I think by doing this we would lose one of the essential aspects of the human condition.

So thats two very big-hitters in the scientific community who patently disagree with Schafers opinion that Aspergers Syndrome is not an ASD. They also have clear reservations about a cure. Schafer, I might say, has zero medical training to the best of my knowledge. Not that this stops him from making frequent medical diagnosis’. This formed part of a recent response to a letter to The Schafer Report from Lenny Schafer himself:

Given their (the group at autistics.org one assumes) apparent lack of diagnosis documentation, the misanthropic attitude and behavior of those in this group appears to be more like Borderline Personality Disorder, which is a
differential diagnosis to Aspergers.

I repeat again, unlike the expert researchers quoted, Lenny Schafer to the best of my knowledge has no medical training. He also claims that because the people at autistics.org are capable of communication this means they are not autistic. Baron-Cohens and Attwoods total lack of indication of the same reasoning in their communication with Aspies For Freedom tends to indicate otherwise.

Once more for the record – Lenny Schafer, to the best of my knowledge has no medical training.

Lorna Wing, possibly the biggest hitter of them all in the field of ASD research presents an excellent overview of the issues in identifying Aspergers as related to autism. She states:

In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger’s clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.

In other words, Aspergers Syndrome is a useful label to give to those not on the spectrum to help them differentiate between the needs of someone with Aspergers and someone with classic (Kanners) autism. No one, despite the best efforts of Scahfer to muddy the waters here, is claiming that Aspergers and classical autism are the very same thing. What the group at autistics.org are claiming (with the full suppoprt of Baron-Cohen, Attwood and Wing it seems) is that they are based on the same triad of differences that constitute an ASD.

The third tactic that the Schafer group utilises is basic fear-mongering. They claim that the group at autistics.org say that no one should help autistic children. This is a lie. They say that the group at autistics.org say that no autistic child should recieve therapy. This is also a lie. What they do say is that there are certain types of therapy which are bordering (and in some cases crossing the line) into abuse (see examples of Lovaas abuse. Please note however that this form of ‘treatment’ is on the decline). Moreso, what they do say is that they need help, that all autistics need help and that this, despite the best efforts of Schafer and his ilk to obscure the fact, is not the same as wanting or needing a cure. A cure removes the autism completely. Interventions into specific situations (comorbidity is the ‘official’ word here) that are aligned to the autism are vital. Below is a quote from an autisitic friend who sums it up perfectly:

I don’t want to be cured. I want a world that understands and I would want help that is effective in helping a child.

Schafer and his suppporters are incapable of seeing this particular shade of grey. To them everything is black or white.

I have to wonder at the mentality of someone who would perpetuate such misleading information and claim to be fighting the good fight (Schafer claims that fighting for a cure for autism is the ‘most noble cause there is’). I can feel pity for Schafer and I know that in his heart of hearts he feels he is doing what is best for his kids but even more I feel pity for his kids should a cure ever come into being. He would administer such a thing in a heartbeat, never thinking that his child, as mine, could be treated for their comorbid conditions and grow up to live a fulfilling life and still be autistic.