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Autism as a medical construct

17 Oct

First off – what is acceptance?

I’ve heard tell that in terms of autism, acceptance equals resignation. But this defeatist attitude came from someone who was a self-confessed anti-vaccinationista. The truth is that acceptance is hard work. It entails a massive learning curve. It requires a heavy time investment. It entails letting go of some dearly held beliefs in favour of cold hard science. It means being realistic _and_ optimistic.

In a recent email exchange I had with a very smart guy, he said to me:

Reaching parents through the Acceptance approach how to distinguish what needs to change in society vs. what actually makes sense to attempt to change at the individual’s level, and helping them redirect all that energy towards both goals in appropriate balance, is the long-term solution.

Because you see (gasp!) parents who follow an acceptance based approach do not see their kids as utterly perfect with no need for any intervention whatsoever. That is not realistic. It is not parenting. That is abandoning one’s child to the vagaries of fate.

My daughter is far from perfect (in that developmental sense of the word). She needs educating. She’s being educated. She needs to develop life skills. We are developing life skills. Sometimes she’s genuinely naughty. When she is she’s punished. She’s not naughty due to her autism. She’s naughty because she’s six and six year olds have a capacity for naughtiness.

However, we also see the need to try and bring about development in society as well as development in our children. Autism is still seen primarily as something that primarily affects children. It isn’t. Autism is poorly understood on many levels. Educational resources for autistic children and adults are very bad in the UK and not great in the US. The idea of a spectrum of autism is still to gain widespread acceptance. The idea that the word ‘spectrum’ might not be the right concept has barely registered.

So – yes, autistic children need their parents input. Society also needs their parents input. Society also needs autistic people’s input.

My email correspondent went on to ask about how we could get people – parents new to diagnosis – to work for their children and also in society.

My answer was that education was key. How to reach parents _before_ diagnosis. Why?

The very first time ‘autism’ is used to a parent it comes from a diagnosing doctor. Because autism is still poorly understood – even by Doctors – the diagnostician may tell a parent that their child will need institutionalising, sometimes drugging, sometimes that they have no functional future. I don’t like John Best Jr very much, but the first time I heard that his diagnosing doctor had called his son a vegetable, I felt pity for him and his son. How could a doctor be so obtuse?

So when a parent hears that (and it still happens an awful lot) 9 times out of 10 a voice in their head adds on ….”unless you can cure them”…. and thus through a combo of diagnostician and the ‘hope’ of cure, autism as a medical disorder is the predominant way a parent becomes familiar with autism.

Very rarely does a parent have the strength after hearing that to keep an open mind. Find the cause, find the cure. Do not be autistic, do not collect £200. What we heard when Meg was diagnosed wasn’t anywhere near that bad and yet that’s the path we went down.

And what happens when a cause is supposedly found? This is the crucial time. This is the point a parent can become an autism advocate or an advocate for their autistic children. For a lot of people, vaccines are the cause. MMR or thiomersal based. Or mold. Or french fries. Or aliens. Or whatever. You can stop and say ‘my god, I can’t believe this’ and be swallowed whole by what I can only describe as maelstrom of anger, blame, transferred guilt and panic. SoapboxMom wrote a good post about the self-destructive side of anger and how it can turn on you and consume you. There are a few people I can think of who are very close to that point.

I’m going to quote from something yet to be published. I’ll be writing more about it in a few months but for now, this passage sums up why I think a lot of parents are angry.

I am not sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic. Perhaps they don’t want to give up on the hope that, if only we could find the cause of the ‘epidemic’ we could help these children. We could eliminate the toxins, hold big corporations accountable, do something to reverse the trend. If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science.

Real solutions. How do we as a society want to treat autistic people? That question needs a solution. What is the best way to help an autistic child feel accepted, to nurture their talents and address their needs? That needs a solution. What is the best way to help an autistic child become an autistic adult with a feeling of self worth? That needs a solution. The cause of these issues didn’t originate from the barrel of a syringe and the solutions won’t come from blaming people and conspiracy theories. It won’t come from the total medicalisation of autism.

Maybe the solution might come from people who are autistic? Maybe if we listen to them, we can hear about what helped them. What was no good. What hindered them. What they care about as individuals _and_ as a particular group of people.

And maybe there are some truths that are unpalatable which must be faced.

I believe that science progresses no matter what. For good or bad, if a scientist wants to answer a question, then they will find a way to answer it or add to the body of knowledge so a like minded scientist can answer it in the future. Science has brought us the internet and nuclear bombs. Non-invasive surgery and landmines. Streetlights and the AK-47. At some point, it will bring us a genetic test for autism. I believe it is inevitable and that no matter how I might personally feel about it, or how much I might worry about how it is employed, it will happen.

I think that for things like this that protesting the development of such a thing is futile. We need to turn what could be negativity into a way to employ this. Our challenge should be to help people realise that autism doesn’t have to be something that requires a termination. Maybe a genetic test can be seen as a window of opportunity to educate parents who know nothing about autism into potential parents of autistic children forearmed and ready to work with their children and use what anger they may have against a system that is not conducive to accessibility.

Mark Geier, David Geier and the VSD

10 Oct

Introduction

One of the many anecdotal lynch pins of the Mercury Militia is the fabled story of what happened when the Geier’s attempted to study the VSD database.

Please bear in mind that to the Militia this story carries a *lot* of weight. It is one of the few supporting crutches left under the hypothesis that since thiomersal was removed from vaccines autism cases have gone down. Educational data has failed them. CDDS data has failed them. The Geier’s paper using VAERS (a non starter if they’d only thought about it) was so bad it couldn’t be published in a proper science journal and so this VSD story is all that’s left.

This story is enshrined in the hallowed pages of Evidence of Harm although the source of the story is unclear. Here’s the Militia version.

What The Geier’s Said

The VSD is the Vaccine Safety Database. This database carries raw data related to vaccine safety. The Geier’s were allowed access to this data, together with their computer expert Vale Kernik who would run the statistical programming tool in the SAS language that the CDC’s VSD uses. SAS is a widely used solution for statistical analysis.

The VSD’s Wikipedia page says that:

Only two outside researchers, Mark Geier and David Geier, have thus far gained access to the raw data. They faced formidable obstacles before being allowed into the CDC computer center, and then resistance from staff and software malfunctions once inside. Nevertheless, they reportedly found highly elevated risks for autism among children in the highest mercury exposure group. The Geiers study on the VSD, “A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis” was published in the Medical Science Monitor in 2004 volume 11(4):CR160-CR170.

NB: This page has been edited by a member of the Geier household – against Wikipedia recommendations.

Evidence of Harm (the Kirby book) deals with the same event:

In late July the CDC informed the Geiers that the requested data set had been assembled. After paying a processing fee of $3,200, the Geiers were given two dates in August to come and run their studies. But there was another entirely unexpected wrinkle. Just two days before their appointment, a CDC technician called to make sure they were fluent in the programming language SAS, which is used in the VSD database. The Geiers had never heard of it before. “You must not be epidemiologists,” the technician said, “They all speak SAS.” If that were true it was news to the Geiers……Reluctantly they cancelled the appointment. It took two weeks to find someone who could run SAS…..They got new dates in October 2003… the dad, Vale Krenik, flew in from Texas. The were met by a woman who introduced herself and said she would be their “monitor

Evidence of Harm, p280 – 282.

And then things got very surreal. Their ‘expert’ programmer (who apparently taught himself SAS in two weeks) was stymied by the most dreaded sights for programmers – a command line interface.

How on earth can this be happening?” Mark muttered shaking his head, “Once again they got us.” Silence filled the room. There would be no number crunching today. The men stared at the screen.

Sorry. I’m being facetious. Any ‘expert’ who can’t work in a command line at even a very basic level is _not_ an expert.

The weirdness continued when the CDC monitor who was due to accompany the fearless trio for the duration of their stay popped her head out the door, looked both ways, came back into the room and:

She sat down and took a deep breath. “Don’t tell anyone this,” she said in a low voice, “But I can help you.”….I’m telling you, they know,” she said conspiratorially. “There’s a big problem”…..”The autism numbers are going down,” she said, “We are watching them drop.”

This mystery CDC monitor became known as ‘Mrs Toast’. Over on the EoH Yahoo Group, it was discussed why:

There is a woman who I refer to as Mrs. Toast. She is a CDC staffer who was responsible for monitoring the Geiers when they were instructed to visit the Vaccine Safety Datalink by Congress. When she saw the Geiers datasets, she walked out into the hallway, looked both ways, and came back into the room shutting the door behind her.

The Geiers thought they had epi-evidence. Mrs. Toast told them to look at hers. She told them she was responsible for running weekly autism datasets. She was instructed to run datasets on HMO vaccination adverse outcomes to see what effect removing thimerosal from vaccines was having on the epidemic. She had an affected child and made sure that the Geiers understood that the rates were dropping each and every week.

Author David Kirby had an interview set up, flew down to Atlanta, was in a car on the way to CDC to talk to her, but CDC had found out and they were threatening for end her career if she spoke to him.

When Congressman Dave Weldon found out about her not willing to blow the whistle on CDC’s cover-up he said, “THIS WOMAN IS TOAST!” Which is were I gave her the formal name of Mrs. Toast.

Robert Bloch, EoH Yahoo Group

Hilarious right? Mrs Toast.

And so, off trudge the Geier’s with their expert (the one unable to operate DOS). _Imagine_ their surprise when they get a letter from the CDC that said:

1) The Geier’s had violated the terms of their IRB
2) They asked how to merge datasets in a contradiction of the agreed terms of use of the data
3) They were told they couldn’t and yet they tried to anyway
4) If they had managed to merge the datasets they would have increased the risk of a breach of confidentiality.
5) The research team had attempted to rename data files to make them look like part of the SAS program (by changing the file extension to ‘.sas’)

As a result of this, the Geier’s IRB (Kasier) suspended them from undertaking any more data collection at the VSD.

The Geier’s responded by hotly denying these allegations. They first state that they didn’t violate the protocol but as Kathleen says in her exhaustive look at their reply:

The Geiers here claim to have followed the design of their research protocol, yet simultaneously acknowledge that they were attempting to conduct analyses of information not encompassed by it.

More amusingly, on page two of their reply the Geier’s state:

It is impossible for the datasets given to us by CDC to be merged

And then on page three of the same letter state:

What we were attempting to accomplish was to merge the datasets given to us by CDC to build a record…

And so the situation is now that the Geier’s pet ‘expert’ couldn’t figure out SAS, they had no meaningful results and what they did have was gained under extreme deception to the point their IRB approval was suspended.

And so, they decided to go ahead and publish anyway (well, you would, wouldn’t you?) and thus A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis was born in 2005 (hereafter referred to as G05).

Geier, Geier, pants on fire?

G05 made reference to the VSD data that the Geier’s couldn’t collect/collected part of/pick your belief. In this respect it was similar to a paper written by ex-CDC staff member Dr. Thomas Verstraeten which _also_ used VSD data to look at thiomersal and autism in 2000. This paper (hereafter referred to as V00) found a statistically significant correlation between thiomersal and developmental disorders.

Oh no!!!! Doesn’t this back up the Geier’s et al?

Well, it _might_ except that as Verstraeten himself states in a letter to Paediatrics:

The CDC screening study of thimerosal-containing vaccines was perceived at first as a positive study that found an association between thimerosal and some neurodevelopmental outcomes. This was the perception both independent scientists and antivaccine lobbyists had at the conclusion of the first phase of the study. It was foreseen from the very start that any positive outcome would lead to a second phase. The validity of the first-phase results needed urgent validation in view of the large potential public health impact. Did the CDC purposefully select a second phase that would contradict the first phase? Certainly not. The push to urgently perform the second phase at health maintenance organization C came entirely from myself, because I felt that *the first-phase results were too prone to potential biases* to be the basis for important public health decisions.

Because *the findings of the first phase were not replicated in the second phase*, the perception of the study changed from a positive to a neutral study. Surprisingly, however, the study is being interpreted now as negative by many, including the antivaccine lobbyists.

So, in short, the first phase of the study using a small sample size indicated there might be an issue. When the second phase was undertaken with a larger sample size, the issue disappeared. Not uncommon in the slightest. Its standard practice to conduct a small, pilot study to see if there’s any issue to study further before committing large amounts of public money to a full scale study.

But I digress – back to the Geier’s.

They knew about the V00 paper – of course they did, it would be hard not to – and as they wrote G05 then they looked at it again. Remember that the Geier’s had struggled at the CDC VSD headquarters.

As Kathleen once again unearthed, the Geier’s – with a lack of VSD data at their disposal wrote their paper. It had some odd elements to it. Here’s a table of stats from the V00 pilot study:

And here’s a table of stats from G05:

Take a look at the numbers. Aside from one category they’re identical. Further the V00 paper states:

The final number of children thus included in our cohort was 109,993.

And G05 states:

The final number of children thus included in the cohort examined was 109,993

Woah! Spooky! By some miraculous, completely bizarre accidental coincidence, the Geier’s – who had little to no data from their visit to the VSD – have the _exact same cohort numbers and divisional figures_ as a paper written 5 years earlier resulting from a pilot study that showed a now debunked association!! What are the odds of _that_ ? I wish I knew a betting man who could tell me!

And maybe my betting amigo could tell me the odds of those same two papers having over ten more virtually identical passages and/or tables of figures? Maybe the Geier’s should drop the litigation gigs and move to Vegas and live on the strip.

A Different Interpretation

So here’s what _I_ think happened. Just conjecture but persuasive I think.

First of all, this odd SAS programming language. The CDC think its common amongst stat-fans. The Geier’s say its really really rare. Google says there are over four and a half million web related resources for SAS programming. That doesn’t sound pretty rare to me.

A leading SAS expert says:

Millions of people around the world in business, science, government, and education use SAS software to work with data. SAS software runs on many operating systems, including Microsoft Windows, UNIX, OS/2, Mac, MVS, and VMS. Most features of SAS software operate the same way in these different operating systems.

Still not sounding rare. In fact its one of the few apps that runs on Win, Mac and Unix. Not a good indicator of rarity.

And as for how quickly their ‘expert’ was defeated by SAS, SAS author Rick Astor states:

Fortunately, SAS programming is not that hard to learn.

Unless of course you’re a computer expert terrified of command lines. Vale Krenik is quoted and described on this page. His job (and former jobs) is described as:

Business Manager, Strategic Supplier Manager, Global Telecom Manager

It’s true that one of these roles has a techy requirement but absolutely _none_ can be swapped with the title ‘programmer’ or ‘expert’.

I think that the Geier’s needed someone who knew computers and settled on Krenik. When it came to it, Krenik didn’t know what the hell to do with SAS. If you’re reading this Mr Krenik, the three lines of code you need to merge datasets in SAS are available. I think they panicked and tried to grab as much data as they could in a brute force attack and then change the data files appearance to try and make them look like SAS files by renaming them with a ‘.sas’ extension.

I further think that the whole Mrs Toast episode is entirely fictitious. It even reads like a bad John Grisham novel. Bloch states that Kirby had an interview set up with the nameless Mrs Toast and that she cancelled at the last minute. Frankly, I don’t believe a word of it. I wonder who set up and then cancelled this meeting? One of the Geier’s by any chance? Does anybody know?

And then there’s the magically duplicated data. The Geier’s realised their VSD data landgrab had failed utterly and so they copied the data (and hence conclusions) from the V00 paper.

I don’t believe the Geier’s have ever seen VSD data. I don’t believe ‘Mrs Toast’ exists.

Our thanks and appreciation should go to Kathleen for the painstaking research she has assembled on the Geier’s. I know mine do.

Originally posted at Left Brain/Right Brain.

Open letter to Raun Kaufman of Son-Rise

30 Sep

I read your press release today Mr Kaufman and I just wanted to pass on a few thoughts to you. Your PR piece for an upcoming tour of my country begins with:

Parents of autistic children around the world face daily prognoses of hopelessness. Recent media stories highlight this: In April this year, Alison Davies, 40, leapt to her death from the Humber Bridge in northern England, taking her 12-year-old autistic son, Ryan, with her. In the U.S., Karen McCarron, 37, killed her three-year-old autistic daughter, Katherine, by placing a plastic bag over her head and then tried to overdose on over-the-counter medication a day later. She faces two charges of first-degree murder.

Every day around the world, parents like these are told that their children will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.

I am sickened and angry at your attempt to ‘justify’ two murders by passing them off as the end product of some alleged hopelessness. Ryan and Katie were murdered. Nothing – I repeat, _nothing_ – can justify that or make it understandable and your attempts to coerce emotional empathy from people by using their murders in so baseless a way is an appalling and reprehensible act of moral cowardice and cynical emotional blackmail. Your message seems to me to be clear: come hear me speak or you’ll end up killing your kids.

I’ve had the honour to become close with Katie’s Grandad and I would like to speak from the position of adopted family: this is not appreciated, wanted or deserved. After Katie was killed, Mike contacted Stephen Drake to let him have some photos of Katie. The terms of their use was made clear:

They do not wish for the photos to be used in any way suggesting Katie’s death is associated with a “problem” arising from a lack of services, or a symptom of “desperation” felt by other families. Using Katie’s picture in these ways would only be an insult to her memory and cause more pain to an already grieving family.

Whilst you stopped short of usurping photographs of Katie, you did the next worst thing and usurped the memory her family have. What gave you this right other than the ‘right’ you took upon yourself to emotionally blackmail parents?

You owe the family an apology Mr Kaufman. I hope you can make it sound as sincere as your pious whining about hopelessness.

Autism Podcast Interview

28 Sep

Autism Podcast Interview

Michael from Autism Podcast interviewed me yesterday. It was the first time I’d been interviewed via Skype or trans-atlantically which was a novel experience. I was a bit concerned at how well the connection would hold up with VOIP still being a technology in its infancy but I think both Michael and I were pleasantly surprised at the quality of the voice connection.

The interview itself was very interesting and thought provoking (for me anyway) – its always good to examine (or re-examine) your own ideas and motives I think and Michael asked me some good questions on the purpose and aims of the Hub as well as asking me about Megan and how we approached raising her.

I tried to lighten my voice and flatten my local accent for US audiences (my voice is stupidly deep and Midlandsy) but I still come off as a cross between Robbie Williams and Barry White. Bah.

Also, here’s a little snippet of Meg :o)

Understanding autism

25 Sep

Understanding Autism article (917kb).

I was asked by a journalist from Action Network if I would write an account of our lives with Megan and what role autism played in our family which I was happy to do. I elected to write about our familial transition from grief to acceptance and how it had benefited Meg’s progress (and ours) tremendously.

They did a bit of judicious editing (I have a tendency to waffle on occasion) and (oddly) described this site as a ‘company’ but its a good article and I’m thankful to Action Network for giving me the opportunity to speak about my favourite subject – one of my kids – without fear of encountering a stream of abuse directed towards her.

Shades Of Grey

19 Sep

Not Mercury wrote a great post on causes, cures and definitions of autism. The gist of which seemed (to me) to be that how we approach things depends mostly on how we define them but that unfortunately, definitions cannot exist independently of the subject matter and so the two things will have a continual and unending impact on each other. This makes it extremely difficult to have impartial debate.

This is especially true when one considers the medium we are attempting to debate over. I have never met _any_ of the people I consider close allies. Neither have I met _any_ of the people I consider to not be allies. We converse solely via a web interface. My job makes me painfully aware that this is not the best way to promote calm and relevant discourse.

There is also the added wrinkle that we are _all_ either autistic, the parents (or close family members) of autistic people, or people who work with autistic people. Or all, or some. This introduces an emotional component that is also unavoidable.

Leaving aside all thoughts of evidence, autism is (depending on who you speak to):

1) Mercury poisoning, ostensibly via thiomersal.
2) Vaccine related with maybe a genetic inability to excrete mercury, primarily gained from thiomersal in vaccines.
3) Genetic with a strong possibility of vaccine involvement, notably MMR.
4) Genetic with an unknown environmental ‘trigger/s’ which could include mercury.
5) Genetic with an unknown environmental ‘trigger/s’ but which currently is not indicated to be vaccine related.
6) Genetic.

That’s grossly simplifying the issues, I know that, but we have to start somewhere.

To me, options 1 and 6 are total non-starters. There’s no evidence to support these viewpoints and lots of evidence (academic and anecdotal if that’s your thing) to refute them. Also, to me, from a viewpoint of being a valid route of investigation, all other options are on the table. That is *not* to say I agree with some of them as theories, clearly I do not. I’m saying they have the potential to be correct. This is where the weight of evidence comes into play and we all make our choices depending on what speaks to us individually. I want to stay away from that evidence in this post. I want to try and focus on how our definitions influence our choices.

If we see autism as primarily an acquired thing which negatively affects people as a consequence of that acquisition then that colours our choices. We would want to remove the autism. Likewise, if we see autism as something that people _have_ but can be both negative as well as positive then that also colours our choices. We might want to remove the autism and accept the cost of losing the positives. Again, if we see autism as something that simply _is_ that has both negatives and positives then we may wish to retain the autism and try and work on the negative aspects.

So to me, the answer to Not Mercury’s post, is at its crux, the difference between something someone _has_ and who someone _is_. And how we arrive at that decision all originates from how we define autism. Advocacy undertaken by autistic people and their allies draws comparisons between gender, racial and sexual emancipation and their own neurology. Advocacy undertaken by non-autistic people and their allies paint autism as something medical to be defeated.

Having autism versus being autistic. Does it have to be an impasse?

It would seem that it does if we carry on in the same pattens. However, as long as we do this then ‘versus’ will carry on being the modus operandi of this debate.

Would it be an acceptable compromise to accept that _autism_ is a word used to refer to medical condition/s that may include such things as epilepsy, asthma, stomach/digestive issues etc etc and that _autistic_ is a word used to describe these very same people but is used to refer to who they are and _how_ they are?

We cannot escape that fact that the nature of autism often encompasses disabling comorbidities. But likewise we should not ignore the fact that autistic people have innate strengths and abilities that non-autistic people simply do not. Is it too much to ask that – *regardless of how someone came to be autistic* both these facts need to be addressed and accepted.

If someone is autistic because they are poisoned from a vaccine we still need to be very very careful regarding terminology. The fact that they are who they are is still worthy of respect and rights. If someone is autistic because of their genetic predisposition to autism and trigger X caused that potential to become fulfilled, then that reality is still worthy of respect and rights.

My video ‘Poison‘ caught some flack from people determined not to understand it. They said I was bashing the subjects. That I was taking them out of context. I was not. I did not.

However, someone else said I was taking them in the wrong spirit. That’s closer to the mark. That was intentional. Let me explain.

We cannot even agree on a definition of autism. Let alone decide how to approach treating ‘it’ (as a single entity). Hell, we haven’t even come close to knowing whether it is a single thing (doubtful). There are people on that video using some very strong, very ambiguous language. These are people who have made a point of going on TV, writing in newspapers, being interviewed on radio programs, speaking at conferences using this ambiguous language.

Not Mercury says, and I agree, that one of the things that is harmful and distasteful at the moment is people using language to imply something (and that something.s consequences) are well defined and well understood. They are not. As long as people keep giving people who are largely ignorant about autism the idea that they _are_ then ignorance flourishes amongst the people who need to understand autism the most – the people we want to accept us and our children. My child and my friends should not be demonised to further someone’s political points.

So one of the points (particularly to do with Boyd Haley, Brad Handley and Dr Geier) of the video was to hold up a mirror to the way in which ambiguous language can be used to further ignorance and bad feeling. Its become a Hollywood cliché but the saying that:

With great power comes great responsibility.

should be never more true when we consider using poorly chosen, stigmatising words to describe people. Kathleen’s petition regarding Boyd Haley’s poor choice of words is a case in point. I like to think my petition regarding Autism Speaks poor presentation and supporting justifications is also a case in point. Certainly the 800+ signatures Kathleen has received so far and the 500+ I have received bear testament that there are a lot of people out there who are very very tired of these dangerous words (Kristina calls them ‘fighting words‘) and the people who want to carry on using them to describe people.

This is not nit-picking or hair-splitting. Words have a power. Take the Pope’s recent little slip up. Did he mean to insult the nation of Islam? Almost certainly not. But he did. The reason he did is because words matter. The words chosen by Rick Rollens, Brad Handley and Boyd Haley are unbecoming of people who want to think of themselves as people concerned with helping autistic people. As I’m trying to illustrate, autism is more than a collection of medical comorbidities. Is there anyone who doesn’t think so? And if that’s true, as it surely is, then failing to use words that convey dignity, or at least using words that demean – regardless of intent – does the wider idea of advocacy no good at all. Our children and our friends are not helped by this state of affairs. We must do better.

Calling all autistic college students

10 Aug

A representative of the Autistic Social Action Committee mailed me to ask me to help draw attention to this. Happy to oblige.

Wanted: We are looking for independently communicating autistic individuals who are successfully attending an institution of higher education. Those classified as Asperger’s or any other type of autism are equally welcome. We hope to create a regularly updated blog of autistic individuals attending an institution of higher education for the purpose of changing public perception of autistics in the eyes of parents, professionals, the media, the general public and our own communities. In addition, we hope this blog will serve as a valuable resource for autistics currently in higher education or entering it in the future. We aim for readers who will follow our blog to leave with an understanding of the extensive possibilities of the autistic neurology.

Requirements:

Standard rules of English grammar and spelling will apply, according to either US or UK English (depending on location).
Weekly updates will be expected of all bloggers on the topic of their college experiences. The purpose of these updates are to provide an insight into the unique challenges autistics face in higher education, yet also the many successes that we can achieve. We are looking for bloggers who will provide an open and honest discussion of their experiences, celebrating and stressing their positive experiences while providing practical advice on how to deal with negative ones.
Bloggers must be currently attending an institution of higher learning as of the Fall 2006 Semester.

How to Apply:

Contact AutisticAction@gmail.com by August 22nd with:
A brief biography of yourself (no more than 250 words)
An example of a blog-type entry you have written in the past on any topic that conforms to standard rules of English
A 500-1,000 word description of how you feel about being an autistic and what your plans for the future are
A brief description of your current life situation including, but not necessarily limited to, name, what college or university you are currently attending, age and year in school, area of study, hobbies and personal interests and any current or past employment.
Any past involvement in autistic advocacy, neurodiversity or policy issues will be looked upon favorably and should be included in the application
Applicants should feel free to provide links and/or information about to any websites they maintain or to any of their writings or personal projects.

Who we are:

The Autistic Social Action Committee is a Manhattan-based advocacy and community organization for autistic individuals of all ages and interests. We seek a movement away from the paradigms of disease and epidemic, neither of which are accurate or conducive towards autistic success and prosperity. We believe that autistic individuals hold the inalienable right to live as they are and that their neurological type should be respected and honored along with other forms of human diversity, such as race, religion, skin color or national origin. Our goals include providing a forum for autistic adults to interact with each other and promoting the growth of autistic culture and community. It is our belief that any effective and meaningful venture to provide services for autistic individuals requires the consideration by and the involvement of the autistic community. In addition, we seek to ensure the best possible educational environment for autistics of all ages, noting with concern the proliferation of segregated and inappropriate placements and the difficulties facing autistics of all types in higher education. Finally, we seek to change public perception of autistics by fighting against damaging stereotypes and promoting the success of autistic role models and community leaders, both for the purposes of inspiring the autistic community and educating the general public.

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)

Stupid Eugenics

5 Aug

I’ll try not to Godwin this post too soon but I suspect its going to be hard as its one of those rare occasions when the subject does feel vaguely fascist. Actually, more than vaguely.

In June this year the Times ran a story about a team of British doctors who were:

….preparing an application to the fertility watchdog that would allow them to screen out male embryos to reduce significantly the chance of a couple having an autistic child.

As boys are four times more likely to be born with autism than girls, couples with a family history of the condition want to ensure they have only girls.

This is objectionable on two levels. Firstly, it gives legitimacy to the idea that autistic people are of less worth than non-autistic people. Writing about similar plans in Business Week, Elizabeth R. Schiltz said:

Imagine the public outrage that would greet the publication of a study calculating the cost of not terminating pregnancies if it were broken down into a category such as family income. Although most of our civil rights laws now include “disability” in the litany of prohibited bases for discrimination – along with race, gender, and ethnic origin—our enlightened liberal commitment to diversity appears to go only so far. While we are willing to mandate accommodation to make jobs or public transportation accessible to a person with spina bifida, *the social cost of accommodating her birth is increasingly being seen as exceeding her worth*

This same idea was expressed another way in the not to distant past:

[A] philosopher told me about a Nazi propaganda film he’d seen, called “Freedom through Death”. It featured golden haired youths clad in white, wheeling drooling [non]persons around in wheelchairs while the audience was asked to consider how much labour was being wasted on keeping the droolers alive.

Dinah Murray

The British Council of Disabled People also are concerned.

Simone Aspis, parliamentary and campaigns worker for the British Council of Disabled People, said: “Screening out autism would breed a fear that anyone who is different in any way will not be accepted. Screening for autism would create a society where only perfection is valued.””

Cost and perfection. Is that what we’ve been reduced to as a species? How much money we’re worth and how close to Brad and Angelina we all look like? Consider the following from Ballastexistenz

I was accompanying a friend to the doctor a couple weeks ago, and we were sitting in the waiting room, both of us using wheelchairs. We had the following conversation, or something very like it (I won’t get the details right, but this is the gist):

Her (to my staff): We need to find you a place to sit down. I forgot, you’re chair-impaired.

Staff: Actually I’m okay standing.

Her (gesturing around the waiting room): Just look at all this furniture devoted to your special needs. Hospitals must spend thousands of dollars buying chairs for the… uh… chair-challenged. They require assistive technology wherever they go.

Me: Yes, as a matter of fact, you and I can take our chairs with us, but those poor walking people all have to find places to sit. Must be such a drain on society…

Funny how you can find truth in humour don’t you think? We all have a cost. Not just financial. To decide to attempt to eradicate people based on financial or labour costs is ridiculous.

One of my favourite (series of) book/s is Dune which, aside from being (alongside Lord of the Rings) the greatest fantasy/Sci-Fi books ever written, are also a study in how political power and the ‘power’ of absolute inflexibility and non-diversity inevitably leads to the stagnation of the species. We need change – as a species we _require_ it. Our success as a species was _born_ from our ability to adapt. To adapt we need new skills and new ways of being. Without them we have no flexibility and an ever dwindling series of options.

Now, aside from the incredibly stupid idea that ‘weeding out’ people we have no understanding of is a good thing, there is also the rather more practical point that this patent is based on the flimsiest and most ramshackle logic ever. The science team basically want to screen for male embryos in families that have a history of autism and if they find one, to abort it.

In essence then, this isn’t even an anti-autism piece of ‘science’ – its an anti-male piece of ‘science’. Just to put this idea into some kind of numerical perspective, here’s a quote from Wikipedia:

For families that already have one autistic child, the odds of a second autistic child may be as high as one in twenty

So a woman may have to go through twenty abortions to get her desired NT offspring. And even then there’s no assurances that the girl child won’t be autistic. Mine is. My great Aunt was. Lots are. Lorna Wing is on record somewhere as stating she believes female autistics are historically very under diagnosed.

Mike Stanton pointed out that even the process itself is fraught with peril. And for what? Absolutely no guarantees whatsoever. In fact there is good evidence to suggest that IVF increases the ‘risk’ of autism.

To make another comparison: How about aborting black children to reduce Sickle Cell Anaemia? Who in their right mind would stand for that? How about aborting the children of people who are hypertensive just in case they develop heart disease?

I’m not anti-abortion per se but this is utterly ridiculous. I know that Mike has corresponded with the lead author, Professor Joy Delhanty, in his official NAS role. I would like to add something pretty unofficial:

Professor, this is without doubt the dumbest and least humanistic application of medical science I’ve seen in quite awhile. Please stop and think about what you are doing.

Dr David Ayoub – Hidden Agenda and Stone Cold Certainty

1 Aug

In a world seemingly obsessed with celebrities and the status of famous people, each cadre of existence have their own celebs – even autism research has its own budding superstar league. The top ten elites probably command good money from conference fee’s and parental recommendations from the big forums on the Yahoo Group lists so it can pay to get to be an Autism Superstar.

Just outside the elites are the triers – the ones who never seem to reach the giddy heights of a Wakefield or a Rimland. For these guys, cracking the top ten can mean an endless round of strident press releases, foaming at the mouth invective and slightly less fashionable talking shops.

One of the newer ‘triers’ is Dr David Ayoub. He’s (fairly) new to the scene but already he’s caused a stir with a typically brash ‘triers’ entrance to the market.

David Ayoub – Autism Specialist

I first remember hearing the name David Ayoub on the website of Erik’s FAIR Autism Media where Ayoub is listed as the Medical Director. One would suppose that the Medical Director of an autism organisation that believes thiomersal causes autism would be an expert in either autism or maybe toxicology. In actual fact, Ayoub is neither. He’s a Radiologist.

David Ayoub, MD, is a radiologist at the Memorial Medical Center in Springfield, Illinois

Source

So what does Radiology have to do with autism? Well, nothing.

What medical skills could Ayoub, as a trained Radiologist, bring to the field of autism? None.

No matter, maybe Ayoub has published some good science about autism or mercury?

Well, no – Ayoub MD, has (count ’em) five entries on PubMed, none of which touch on either autism or mercury. His last paper (on digital imaging) was published in 1997.

Whilst the irony of having a trained radiologist on the board of directors of an organisation that seems to think radiology is not necessary to diagnose Precocious Puberty is at least marginally amusing, what’s more amusing is the Ayoub Wikipedia entry. It’s written in breathlessly idolising fashion – headings are entitled ‘Track and field phenom’, ‘Science Prodigy’ and ‘Vaccine education crusader’. This is the online CV of a real ‘trier’, I think you’ll agree. Only a ‘Science Prodigy’ like Dr Ayoub could become Medical Director and ‘Vaccine education crusader’ at an organisation that specialises in subjects he knows nothing, medically speaking, about.

David Ayoub – Definitely Maybe

Perhaps Ayoub’s most famous contribution to the autism = thiomersal debate is his vanity piece written by Evelyn Pringle. Entitled David Ayoub – Thimerosal Definite Cause Of Autism, this article seemed to say a lot but actually said nothing at all beyond the title. Let’s not beat around the bush here. Just like Brad Handley, David Ayoub is stating that thiomersal _definitely_ causes autism. Pretty strong words. Let’s take a look beyond the title of the article though and see what the man himself says to back that up.

Well, the short answer is (of course) nothing. The longer answer starts off with:

I can state that the certainty of the science supporting mercury as a major cause of autism is probably more overpowering than the science behind any other disease process that I studied dating back to medical school.

This is the same science, formulated by the same scientists, that was recently rejected by a court Daubert hearing don’t forget. And not rejected by some legal trickery, but rejected as it was crap.

But David Ayoub, the ‘Science Prodigy’ can state that the same science is ‘certain’ and is ‘more overpowering than the science behind any other disease process’ that Ayoub has studied since medical school.

Possibly a good time to remind ourselves that David Ayoub is a radiologist with five papers to his name, none of which concern disease process, let alone autism or toxicology. I think its safe to assume that the last time Ayoub studied disease process was actually in medical school. I also think it’s safe to assume that Ayoub’s ‘certainty’ might very well be all the evidence the more credulous amongst us might need but I’m far from impressed at Ayoub’s experience, qualifications and bombastic pomposity.

But Ayoub isn’t done yet. The ‘Science Prodigy’ has more stone cold certainties to lay on us:

A growing number of experimental, epidemiological and biochemical research, has unequivocally shown that mercury is directly linked to the development of autism spectrum disorders

They have? Maybe someone could point these out to me? I seem to have missed them. Somewhere along the line I think our ‘Vaccine education crusader’ has concentrated more on the crusading than the research.

I really don’t see the need for more research to prove causality.

Well, of course he doesn’t – did he ever? The whole of the mercury militia have never been overly concerned with trifling matters like research to back up their beliefs. That’s why all the accumulated science to date was thrown out of court and will, barring fresh evidence, continue to be thrown out of court.

Next up in Evelyn’s little thumb nail sketch:

Ayoub is the Director of the Prairie Collaborative for Immunization, an organization that is self-funded, which aids organizations, journalists, and legislators obtain accurate information to assist their work.

Obtain accurate information eh? I really, really doubt that.

So, let’s go see what the Prairie Collaborative thinks is accurate information. Well, under the heading ‘Science’ we have ‘papers’ from Bradstreet, Bernard, Holmes and LOTS from (you guessed it) Geiers. Even Ken Stoller pops up, bless his HBOT heart. So this dross is the ‘accurate information’ that ‘unequivocally’ shows that ‘mercury is directly linked to the development of autism spectrum disorders’. It’s a roll call of the scientists and science that the recent RhoGAM hearings threw out as being rubbish.

He also links to the 2005 DAN Consensus paper – you know the one – it begins with:

This monograph is not intended as medical advice. Its intention is solely informational and educational. Please consult a qualified medical or health professional if you wish to pursue the ideas presented.

Nothing fills you with confidence as much as a strongly worded, legally enforceable medical disclaimer eh?

Recently, David Ayoub has been on a media frenzy. Flushed with the promise of cracking the elite top ten, he’s been commenting on news sites and to reporters left right and centre.

David Ayoub – Darling of the Press

After the killing of Katie McCarron, David Ayoub was revealed as a confidant of Karen McCarron, Katie’s killer.

Dr David Ayoub said he met with Karen McCarron shortly after her daughter was diagnosed with autism.

“She was very dedicated to trying to get treatment for her daughter,” Ayoub said. “I’ve met with a lot of parents who are dealing with autistic children, and she was one of the most loving mothers. This is a story that’s been played over and over again. Homicide, suicide. The families just don’t have the support”

David Ayoub was very vocal on how much of a tragedy this was for poor ‘loving mothers’ like Karen McCarron. Oddly, he had no words of compassion for Katie herself, Katie’s sister, Katie’s Dad, Katie’s Grandparents, Katie’s Uncle and Aunts, her friends or her teachers all of whom had to live with David Ayoub’s barely concealed plea for services.

As a side note, I see today that Karen McCarron’s lawyers are considering an insanity plea. I strongly urge those representing Katie to contact David Ayoub as, based on the above quote, he can easily testify to Karen McCarron’s loving and dedicated nature. That should be enough to establish she was far from insane. I’m sure as a ‘Science Prodigy’ his opinion will carry much weight.

As recently as last month, David Ayoub was again demonstrating his ‘Science Prodigy’ status in a news blog in answer to a Doctor who doesn’t believe the MMR/thiomersal hypothesis. Displaying his keen sense of ethics and science, Ayoub began with:

Dr Ehmke’s comments about parents concerned with vaccine safety is an insult to anyone with any knowledge of the science surrounding this debate. His letter was filled with misinformation, errors and just plain foolish dribble.

Well, no actually Dr Ayoub. What’s actually insulting is your own rabid insistence in the face of no actual _evidence_ , let alone proof, that thiomersal or MMR cause autism.

Ayoub then pointed out Ehmke’s sole error:

MMR vaccine never contained thimerosal. This blunder set the tone for the rest of his letter.

Interesting. Possibly no one told Boyd Haley or Liz Birt this little fact.

I have been working with Boyd Haley since September 2000 who testified at the recent Congressional hearing. Your source is incorrect. I have Boyd’s testing results and there is mercury in MMR. He did not find as much as what was in Hib, Hep B and DTaP. However, IT IS THERE.

I guess we can await Dr Ayoub’s denouncement of Boyd Haley as a foolish dribbler with interest. Other gems from that piece include:

The epidemiological studies refuting the claim of a link to vaccine mercury have all been refuted as flawed studies.

There are at least 4 published papers that demonstrated autistic children have a lower, genetically determined ability to eliminate mercury due to lower levels of glutathione

There are hundreds of physicians breaking rank with their own organizations such as the AMA and AAP and admitting that mercury in vaccines was indeed a major cause of a variety of developmental disorders

I would discourage parents from having too much trust in what their pediatrician will tell them

Basically, its a (poorly formatted) rant based on nothing more that our resident ‘Science Prodigy’s’ belief in his pet hypothesis. There’s no actual science in there at all.But what turns a respectable radiologist, just beginning a career in his field and a career as a published scientist in his field into a what we see – an absolutist who’s stone cold certainty based on no decent science has led him to his current position as Medical Director of two organisations widely regarded as anti-vaccine in agenda?

David Ayoub – A Hidden Agenda?

On the 3rd of January of this year David Ayoub was a guest on Radio Liberty. Radio Liberty is an online radio station that specialises in talkshows about fringe conspiracy theories. Other interview subjects that month included John De Jacomo who gave a talk on:

The prophetic significance of world events today. People are looking for peace; will this usher in globalism – or pave the way for the reign of the anti-Christ?

And Caryl Matrisciana who addressed the burning issue:

The Chronicles of Narnia movie is being touted as a great Christian movie. Is there a possibility that the New Age is being dressed in Christian clothing?

Fascinating, relevant and deeply scientific questions, I think you’ll agree.

So what was our ‘Science Prodigy’, Dr David Ayoub there to discuss?

Linking mercury in vaccines to global population control.

Unfortunately, I can’t find an mp3 of this interview anywhere but believe me, I would _love_ to hear David Ayoub’s thoughts as a ”Vaccine education crusader’ on how vaccines are used to control the global population. Maybe he could upload this interview to the Prairie Collaborative site in order to aid ‘organizations, journalists, and legislators obtain accurate information’ about how vaccines are used to control the global population.

Now, being an avid fan of nutty conspiracy theories I thought I’d check out Erik’s others friend’s (John Scudamore) website (whale.to) to see what I could find about the global population control theory.

Well, its not good news I’m afraid. Apparently, the global population are Targets of the Illuminati and the Committee of 300. They’ll get us like so:

Unemployables in the US, in the wake of industrial destruction, will either become opium-heroin and/or cocaine addicts, or become statistics in the elimination of the “excess population” process we know of today as Global 2000.

To cause, by means of limited wars in the advanced countries, by means of starvation and diseases in the Third World countries, the death of three billion people by the year 2050, people they call “useless eaters”. The Committee of 300 (Illuminati) commissioned Cyrus Vance to write a paper on this subject of how to bring about such genocide. The paper was produced under the title “Global 2000 Report” and was accepted and approved for action by former President James Earl Carter, and Edwin Muskie, then Secretary of States, for and on behalf of the US Government. Under the terms of the Global 2000 Report, the population of the US is to be reduced by 100 million by the year of 2050

Not good. But it seems that as long as I _don’t_ go to America and I _do_ have a job, I’ll be safe from the Illuminati! Hurrah!!

Evidently, Dr David ‘Science Prodigy’ Ayoub believes that vaccines are yet another weapon in the vast, nefarious arsenal that the Illuminati can bring to bear on us. Eeeek!

What Happened to Dr David Ayoub?

At some point, David Ayoub clearly stepped off the mainstream science path and started his journey into conspiracy theory driven belief. That’s fine as far as it goes. He can believe whatever the hell he likes.

What’s not fine though is how his attempts to see through his global population control anti-vaccine agenda have latched onto autism. He deals in unverified absolutes and needs to be thought of in the context of what he really is – an antivaccinationist with a disturbing set of political beliefs.

Jennifer unearthed a truly disturbing presentation from David Ayoub regarding his population control conspiracy theory. It’s an ‘interesting’ read!

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