A Touch of Alyricism

Dedicated to the equally fascinating topics of autistic advocacy and the 'sisterly sophistries' of radical gender feminism. Other topics may occasionally crop up. Contactable at alyric@gmail.com


Polemicist since Grade 8

Monday, July 17, 2006

And the Truth Shall Set You Free.......

……..In which case, there are apparently a large number of parents of autistic children out there in a permanent state of bondage.

Below are a few of the comments of parents on Kev Leitch’s petition contra the Autism Speaks video, Autism Every Day. Naturally, I signed it. My views on the topic are fairly clear not to say forceful (here and here).

>>>>As a videographer/editor and as a mother- I enjoyed the documentary and think it has great educational value. The general public needs to understand the pain- and it's not pretty. Why would anyone vote for more funding or better trained teachers if everything in the autism world is a-ok?

As you say, it may not accurately depict autism for every family, but for the uniformed - it sends a powerful message. I'm sorry if anyone finds this offensive but I certainly was able to relate to a lot of what those mothers had to say. There fears, hopes and dreams.....hit home for me.

I can see where some people have complaints with Autism Speaks. This isn't one of them. It is an amazing view that may help people to realize this IS something serious!

It left out any treatment options or real hope but it was finally a different view than all the HFA stuff we see.<<<<<<

There are a couple of themes running through the commentary.

It’s OK to exaggerate (might as well call something on this scale lying).
People won’t listen to us, provide needed services etc unless we tug the heart strings pretty strongly so since our hearts are pure - 1. is really OK.

So, the fairy tale method of pedagogy is alive and well. Ignore the dragon, smoke, fire etc, they’re only there for theatrical effect – concentrate on the message – Folks we need help here. Just wondering if these folks know that this is a very slippery slope and about to become suicidal when Joe Q Public realizes that a) they’ve been exaggerated to (OK - lied to) and b.) the depiction of autism portrayed may, on a bad day, apply to a mere fraction of that 1:166. I digress.

The interesting point of this commentary is similar commentary for similar reasons. I thank jypsy and the Diva for the motivation here. On the Diva’s blog (comments section) jypsy posted the following:

That would be Christine, maker of the "Emails from Marty" video... http://tinyurl.com/e94hp
"This 11 minute video is based on emails written by a 25 year old man with autistic spectrum disorder, describing his life-long struggle of being different. Includes photographs and video of children from all over the world."Her thoughts on her video"this is america- and i can sell any video i produce.putting a disclaimer on the video itself is my choice.putting a disclaimer on the website is my choice.what i do with this video is my choice- and as for my "credibility"anyone who knows me knows my motivations."

Actually, the first Christine cited by the Diva is a different Christine, but the message is eerily similar. In the case of supercon Marty Murphy, it was OK for a verbal autistic to impersonate a non-verbal autistic of the opposite gender because the message – a kind of free form poetry version of the Autism Every Day video was too good to pass up when it comes to educating the public about autism – even if this was complete dishonesty. After all, as the first Christine put it “anyone who knows me, knows my motivations”. Interestingly, there was a petition to sign contra Marty Murphy’s opus too. Yes – I signed that.

Wade Rankin is a very nice bloke I think, if occasionally misguided. What leads him astray is interestingly, the same sort of thing expressed by the two Christines and assorted parents – simply – it’s OK to mess with the truth in a good cause or in it’s usual guise – the end justifies the means, a very ancient fallacy indeed. However, leaving the ramifications of this fallacy to the philosophers, the point of this post is to examine two very different ways of looking at the world.

It’s a sort of balance between the relative importance given to facts and the relative importance given to feelings - and it’s a continuum. It just so happens that there are whole swags of reasonably intelligent folk who give great value to facts even if somebody gets hurt in the process, because they think that this is the best way. Of course, there is a whole other swag of reasonably intelligent folks who think that feelings including the feelings you engender in other people are what really matters because that’s what’s really important for people when you come down to it. This argument is as old as the hills and there is some evidence that the basis is real – see Simon Baron’ Cohen’s work. This has a whole lot of ramifications - someday I’ll get around to writing ‘mere masculinity’, a mini opus on why psychologists don’t like traditional masculinity.

In a a ‘more in sorrow than in anger’ post on ‘The absurdity of being taken to task for what one doesn’t say’, Wade writes about some of the Hub’s memorial tributes for Katie McCarron:

“Those that used the death to make a point were not alone, though, as many in the press and in various corners of the web tried to connect this senseless act to a “lack of services.”

Hmm, as I recall there actually was not one single press article at the time that was not all about 'she must have been driven to do it' and not that many Hub tributes that said 'she was a selfish no-good mother who did it because Autism Speaks and Autism Canada led her to believe she could get away with it. Heck, Autism Canada would most probably give her a job if she succeeded.'

The problem is, I would think, the relative position Wade takes on ‘facts’ . Wade wrote earlier on the killing of Katie McCarron that he had refrained from comment

“- more from a complete lack of understanding about what could compel someone, who by all accounts was a devoted mother, to take the life of a beloved child.”

Hmm, the facts say that Karen McCarron hadn’t parented this child for the past 20 months –just over half the child’s lifetime so there is no evidence that she was devoted and it is doubtful that she considered Katie beloved, since she killed her. Note – these are just the facts – not a word said yet about feelings.

Now, why would a nice guy like Wade choose not to see what is in very plain sight? Perhaps because there were other things that were in plainer sight to him - like solidarity with the feelings of a fellow parent of an autistic child, who might after all be innocent of murder because she was not in her right mind at the time. That thing called solidarity is all about feelings and with the above three examples, the base hypothesis is that for a great many people, feelings especially those of solidarity come first and everything else second. That this can be demonstrably pathological behaviour in many situations is never really addressed.

So, the next time someone suggests to ‘agree to disagree’ – diagnostic of the pre-eminent feeler’ – decline.

Sunday, July 16, 2006

Are Journals that gullible?

Letter to the powers that be at Hormone Research. See http://neurodiversity.com/weblog/article/104/update-a-republished-article for why.

17 July 2006

Dr Franco Chiarelli
Secretary General
European Society for Paediatric Endocrinology

Dear Dr Chiarelli

I would like to draw your attention to an article e-published by your organisation’s journal Hormone Research on 5 July 2006, titled A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders, by Dr Mark Geier and Mr David Geier. There are a number of anomalies in this publication, which contravene the guidelines set by your organisation for responsible publication.

Firstly and perhaps critically, the study is overseen by a review board with neither the expertise nor the objectivity to assure the well-being of the study’s participants or the integrity of the study results. The Institutional Review Board of their Institute for Chronic Illnesses (IRB) is composed of people with either a committed financial stake in the outcome (Dr and Mr Geier), a family member (Anne Geier), business partner of Dr Geier (Dr Young) or the parent of a participant in the study (Lisa Sykes). The supposed expertise in biochemistry is vested in Mr David Geier, who has completed two postgraduate biochemistry subjects at George Washington University. There is no expertise present in the IRB on endocrinology. Somewhat curiously, the IRB oversight appears to be retroactive. The IRB was registered in March 2006, the research described in the article was conducted between November 2004 and November 2005. There is no statement from this IRB concerning the long-term effects of chemical castration (Lupron) on a group of children, both boys and girls, now numbering over 50, who are undergoing the Geier’s ‘Lupron Protocol’ despite the lack of peer reviewed scientific support for what is at present, merely a hypothesis. No doubt, the article in Hormone Research will be produced as evidence of scientific rigour.

Secondly, the journal article states that neither Dr Mark nor Mr David Geier has a conflict of interest in the results of this study. Surely the editors were aware that Dr and Mr Geier have applied for a patent of the ‘Lupron Protocol’, which would constitute the ultimate in conflicts of interest.

Thirdly, the actual biochemical rationale behind the Lupron Protocol has some elements that are dubious in the extreme. The concept of a testosterone sheet, which traps mercury underlies the Protocol. However, testosterone has only ever been demonstrated to take this form if treated with hot benzene in the laboratory. Dr and Mr Geier discuss this and other concepts here. Part 2 of their presentation refers specifically to testosterone sheets. There is no mention made that this is, thus far, a physiological impossibility.

Fourthly, the study was apparently conducted in a suburban home, residence of Dr Mark Geier. The Institute for Chronic Illnesses (convenor of the IRB) and the offices of The Genetic Centers of America (study organisation), are all located here at Dr Geier’s home address.

Finally, the work of Dr and Mr Geier has not held up to either scientific or ethical scrutiny in the past. I refer you to the outcome of a recent legal case, where the testimony and research integrity of the Geier’s was found to be less than satisfactory. The Institute of Medicine, the premier medical organisation in the US, has also criticised their work in the IOM 2004 Report, Vaccines and Autism.

I understand the necessity of freedom to pursue an idea and I have no wish to stifle scientific endeavour. However, when the endeavour lacks any real basis in science and appears to be mere scaffolding in order to erect a façade of scientific respectability in pursuit of legitimising a lucrative protocol, I question why a peer reviewed journal such as Hormone Research would lend its name to the enterprise. The journal has nothing to gain but a tarnished reputation. The future clients of the Geier’s Lupron Protocol have potentially, a lot more to lose.

I urge you to read the extremely thorough critique of this new direction in autism treatment and its authors, by Ms Kathleen Seidel of http://www.neurodiversity.com/.

Yours sincerely

Monday, July 10, 2006

Unnatural Selection

I fully approve of the protest against the attempted extermination of autistics, hence this brief post. However, I really thought that AFF and the Hub were getting just a tad carried away here considering that nobody has a clue what the ‘genes for autism’ are so how then is it possible to have a prenatal test for autism that is in any way meaningful? So, to a little reading and here is one of my favourite hub bloggers, abfh (I think that should be lower case).

I look at it this way: Somebody has to yap loudly enough to draw attention to what's going on before it's too late. This is not a genteel debate in the quiet halls of academia; it is a war for the survival of our race. The eugenicists have us in their crosshairs, and their fingers are already tightening on the trigger.

I particularly liked the bit about this not being a genteel debate in the groves of academe. Indeed. A war for survival it is and the debate had better start now instead of the magic moment when a company rushes their genetic supertest to market. I really thought that it was unlikely that a society would stoop to aborting male embryos so that a female with 75% less chance of developing autism could be selected, but I was wrong. Since it appears that your child is part of your status, just like your Ferrari, then I think it can be taken as read that any manifestation of autism is unacceptable and will be prevented if at all possible. Low functioning or high functioning doesn't enter into it.

Seriously folks, there’s lots and lots of moolah to be made on the back of not just fearful folks traumatised into abortion by worst case scenarios of autism, actually, make that fictional scenarios of autism, if the Autism Speaks video is anything to go by but on the back of society itself. Yep, the autism extermination programs of CAN, DAN, Autism Speaks and practically everybody else in the autism community are going to provide a unique experiment in social Darwinism. They’re going to, and we, the society, are going to bear the brunt of any major errors in thinking that this extermination program has.

Like first up – eugenics doesn’t work because selecting for a trait like autism with hopes of improving overall genetic fitness presupposes complete genetic knowledge of what controls the manifestation of autism (what everybody is now frantically looking for) and what happens when you eliminate those genetic properties from the gene pool (what nobody is looking for or even thinking about). It also rests on the gigantic assumption, which is almost certain to be categorically wrong that the genes for autism have no value for the human race – the message that CAN, DAN, Autism Speaks et al are busily promoting right left and centre. Remember, autism is a tsunami of catastrophic proportions. Genes that are so persistent in the gene pool are there for a reason. Take a look at these two real life examples of what happens when traits are selected for without much of a clue what they’re there for, courtesy of the Greythumb blog.

Greythumb points to an article on poultry science, which outlines the group selection effects observed when trying to breed chickens for increased egg production in multiple-hen cage environments. What happened was not increased egg production, but mean chickens. He goes on to draw an appropriate parallel in a similar ‘experiment’ conducted by the Enron corporation human resource management department. Apparently in an effort to boost productivity, their stock market traders were put through repetitive performance appraisals and the lowest performing 10 – 15% were fired. Again, what happened was not increased productivity, everyone knows what happened to Enron, but a bunch of mean dishonest traders, only too willing to sell their own grandmothers for the sake of an improved bottom line.

We know practically nothing about the genetics of autism and even less about autism itself. Yet there are loads of experts ready and willing to jump on a prenatal test as soon as it becomes available. We also know through history, quite apart from the horrors of Nazism, that researchers with vested interests are only too willing to lie about their findings in pursuit of not just big bucks, but also fame. The notorious Jukes study should give this modern eugenics movement pause – but it won’t. I’m betting that it will take the actual results of excluding the myriad factors predisposing a significant risk for autism to jolt people into an awareness of what a lot of us know already – autism is just a different way of being. Without it or at least some trait of it, I’m guessing that the offspring may be perfectly amiable social beings with about enough cognitive prowess to rise to middle monkey rank in the pecking order, but no higher.

The ultimate question. Should CAN, DAN et al read more poultry science?