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Acceptance not denial

22 Aug

Acceptance. It is a word that some use to describe their relationship with the reality of their children, or their own, autism. We accept the fact our daughter is autistic.

For people who claim to ‘fight autism’ this acceptance is a weak passivity. An act of giving in.

This, of course, is rubbish. Those who have accepted the reality of their own or their children’s autism know that the work starts right there. We do not attempt to carry on deluding ourselves and using quack treatments such as chelation etc as shields against the reality of who our kids really are.

Parents like Brad Handley of Generation Rescue claim at one point in time that:

“autism is a misdiagnosis for mercury poisoning…..The whole notion of autism is mythical. It didn’t exist before thimerosal in vaccines”

Source

and then later say:

The argument is being spun by focusing exclusively on a single ingredient used in vaccines, Thimerosal (which is made from mercury), while forgetting to mention a number of key points about the differences between the vaccine schedule of 20 years ago and today….Thimerosal is only one of the possible ways that the vaccine schedule could be the primary trigger behind the autism epidemic…

Source

are simply in denial. When their first belief is established to be untrue, they simply move on to another belief.

From the videos I posted a link to above, Brad is asked:

Q: This therapy (chelation) is it something he (Jamie) will be on the rest of his life?

Brad’s answer is:

A: Absolutely not. Its at maximum a two year process. Probably less.

As of next month, Jamie Handley will have been undergoing various treatments for three years. His story is not, as far as I can tell, listed anywhere as a ‘recovery’ story. He is still autistic.

Brad has made no effort to go back onto TV and explain this inconsistency. This is because he cannot. It is not explainable. I will be honest. Brad and I regularly exchange verbal barbs but I often feel sorry for the Handley’s. Because of their inability to accept the reality of their sons autism they have been unable to move on. They have instead – as I think is the case with a lot of the autism/vaccine parents – sublimated their failure to ‘cure/recover’ their kids in a proxy-fight with the ND’s, the CDC, the FDA – whatever.

I read a lot of blogs from the likes of Wade, Ginger, Kim Stagliano etc and whilst I often read about their anger and I often read about their love for their kids, I never ever read about them being happy. Do they love their kids? Of course they do. Do they enjoy their time with their autistic kids? I don’t know. I don’t think so.

There is a curious emphasis in a lot of these blog posts. Take Kim Stagliano’s most infamous blog entry – The Crappy Life of the Autism Mom – in which she says:

Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.

The jarring difference between stating that she is not denying their value and describing her life as their mum as crappy never occurs to her. It is also sad beyond belief that Stagliano feels that the measure of a persons value is the suffering of their parents.

Of course, the truth is that any decent parent will devote their lives, savings and sanity to their kids well being. That is not a situation that is the sole province of autism or even disability. Just parenting. However, I think that as well as lives, money and sanity, a parent should also invest respect and reality. Sublimating a continued tilting at the windmill of your child’s condition into an increasingly dirty and violent fight against a giant conspiracy is sad. Not sad in a sneering way but genuinely sad. It must be so miserable to be simply unable to accept the reality of the nature of your child.

This inability manifests itself in some strange ways. There have been a spate of articles fairly recently which examine the possibility that older parents are more likely to have autistic kids, or that autism might be due to a ‘corrupted’ (in the medical sense) gene. The outbursts these research papers have generated on EoH are amazing:

You forgot to mention that we’re damn old TESTOSTERONE-laden refrigerator mutant moms……………Here’s more from Autism Speaks funded research. So now the theory is it’s you damn old moms with your refrigerator mutant genes that causes autism. You are such horrible people. Tsk-tsk. Clearly, you aren’t feeling guilty enough, no matter how misplaced.

Any hypothesis which mentions or refers to parents is given equally short shrift. It doesn’t take much to work out why. Even when there is no hint of ‘blame’ (as in dear old Bettlehiem) to parents, any intimation that the genetic/physical make up of parents might have something to do with causes is pounced on and denounced in increasingly hysterical overtones.

Personally I don’t see the issue. Does it matter? No, not to me. But it seems to these parents that the idea that they might carry some responsibility for the fact their kids are autistic fills them with an utter horror. Even to the point that they have to delude themselves.

Take the cases of Erik Nanstiel’s daughter and John Best’s son. Here are two fathers who regularly sing the praises of their children’s doctors (the Geier’s and Andy Cutler respectively) and yet…

When we look back at everything we pay out of pocket… and for everything we pay as a co-pay… it’s several THOUSAND a year.

Why are we still doing biomed after six long years? Because we’ve seen our daughter go from failing-to-thrive to a pretty healthy kid. From a kid who couldn’t balance her copper and zinc… who had lead and mercury through the roof, with very little glutathione… who had constant diarrhea and wouldn’t sleep at night… and terrible eyesight…

to a kid with darn-near normal mineral levels, whose heavy metals have been more than half depleted, is thriving on a good nutritional program… and whose glutathione levels are now higher than daddy’s… is sleeping wonderfully through the night and has seen a 60% improvement in her eyeglass prescription.

She’s also nearly lost her tactile-defensiveness, loves attention (much more than before), stims a LOT less… is beginning to potty train and needs less “prompting” from us for life skills that she’s learning (like using silverware at meal time and dressing/undressing, etc.)

She is still considered low-functioning…

Like Brad and I, Erik and I have also had our fair share of verbal jousts but when I read this I want to weep. How can a man who so obviously adores his daughter fail to see that which is right in front of his face? They’ve been doing biomed for six years and his daughter is still low functioning (Erik’s words). The improvements he describes have little to no bearing on autism.

I waste no pity on John Best but once again, his denial is as plain as the autistic son in front of him:

I’ve done 55 rounds of chelation safely following the advice of Andy Cutler. My son keeps improving. I advise everyone that contacts me through GR to read what Cutler has to say and consider his protocol over what some DAN doc’s say. He has answered all of my questions at no cost and this chelation for a severely autistic child is working.

Whereas today, John made a post on EoH that stated:

In the time it took me to type my last reply, my son smeared feces all over himself and his room again. I’ve long since lost track of how many hundreds of times this has happened.

By the standards of Kim Stagliano – smearing (A Crappy Life remember) equals not cured. How exactly is the chelation working for John’s son? Or is it merely a panacea for the denial that ails his dad?

Andrew Wakefield, MMR and….The Observer??

8 Jul

I have a category tag on this blog especially for the loons at the Daily Mail (Melanie Phillips et al) which I usually select whenever I write about Andrew Wakefield or the MMR because its invariably one of them doing the writing.

This time I was amazed to see that it was that usual bastion of intelligence and propriety, The Observer, that had decided to play the role of media dumbass. Obviously the mail and Private Eye are having an off day.

First up was Andrew Wakefield himself – comparing himself to Vaclav Havel no less he pontificates:

Wakefield told The Observer that he has no regrets for saying what he did in 1998 nor for continuing to seek to prove his view of MMR as the likeliest explanation for the rise in cases of autism in Britain. Almost every child health expert, though, regards the jab as hugely beneficial to public health and rules out any connection between it and autism.

‘My concern is that it’s biologically plausible that the MMR vaccine causes or contributes to the disease in many children, and that nothing in the science so far dissuades me from the continued need to pursue that question’, Wakefield said.

Nothing in the science? Is he joking?

How about the sworn testimony of Stephen Bustin, the world expert in the technique Wakefield’s lab of choice screwed up:

What I immediately observed was that they had forgotten to do the RT step…….If you detect a target that is apparently measles virus in the absence of an RT step by definition it can’t be measles virus because it has to be DNA. It’s a very simple concept. At least it is to me. It’s not to everyone else……[b]ecause measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus….

What’s not to get here Andy? Your lab fucked up. And whats more, in your original study, you ignored the fact that you had been proven wrong:

Q Okay. Did you personally test the gut biopsy samples for measles RNA?
A Yes.

Q What tests did you perform?
A A PCR test, a polymerase chain reaction.

Q What results did you receive from the gut biopsy materials for measles RNA?
A They were all negative.

Q They were always negative?
A Yes. There were a few cases of false positive results, which I used a method to see whether they were real positive results or false positive, and in every case they turned out to be false positive results. Essentially all the samples tested were negative.

…….

Q So you personally tested while you were in Dr. Wakefield’s lab gut biopsy material, CSF and PBMCs?
A Yes, that’s right.

Q And all the results were either negative, or if they were positive it always turned out that they were false positives?
A Yes, that’s correct.

Q Did you inform Dr. Wakefield of the negative results?
A Yes. Yes.

Please, someone – anyone – I mean it, anyone. please explain to me _what science_ exists that supports Andrew Wakefield’s opinion that ‘it’s biologically plausible that the MMR vaccine causes or contributes to [autism]’.

Also in The Observer (where is the third to complete the Trifecta of Stupid?) is the story:

New health fears over big surge in autism

And how did The Observer know this?

A study, as yet unpublished, shows that as many as one in 58 children may have some form of the condition

An unpublished study…? So, in other words, hearsay? Is there any indication as to the methodology of this study?

Well, according to Public Address, the team used the CAST (Childhood Asperger Syndrome Test) tool for evaluation. CAST has the following conclusion applied to it by the team that developed it:

The CAST is useful as a screening test for autism spectrum conditions in epidemiological research. There is not currently enough evidence to recommend the use of the CAST as a screening test within a public health screening programme in the general population

Those sorts of questionnaires are preliminary, for children who *might* have an ASD, and who should be followed up. If you take the 1 in 58 having features that might make you suspicious of ASD, then it’s a much more realistic feature – go down the full diagnostic road and you’re going to find that not all of them have an ASD.

And yet this is trumpted as a new health fear? An alternate and much more accurate headline would be: _We think some kids may have autism but we haven’t really tested for it at all_ – not quite as snappy though I grant you.

And hey, how did this story get linked to the MMR?

Seven academics at Cambridge University, six of them from its renowned Autism Research Centre, undertook the research by studying children at local primary schools. Two of the academics, leaders in their field, privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine.

Well, well, I wonder how these two could be? Again, from Public Address (link as above):

Dr Fiona Scott and Dr Carol Stott. Stott is a psychologist and is about as qualified to comment on diseases of the gut, immunology and PCR testing (all of which are relevant to the MMR claims) as I am. But there’s more to it. Her name will be known to anyone who has looked at this saga. It was Stott who sent a string of abusive emails to Brian Deer, which led to a formal warning from the British Psychological Society. (Stott accused her colleagues of failing to support her in her battle with Deer because they were in thrall of drug companies.)

Campbell doesn’t tell his readers all that. He also forgets to note that Stott is no longer employed as a junior researcher at Cambridge. She now works with the California-based clinic Thoughtful House, which is run by – did you see this coming? – Andrew Wakefield. As you might expect, Deer takes a dim view of what goes on there.

Until Deer started writing about it, Stott and Dr Fiona Scott shared a website, on which they touted their “substantial experience in medico-legal and educational-legal expert witness work” to parents who might have been minded to pursue legal action in the belief that the MMR vaccine had caused their children’s autism.

It would appear that either or both of Stott and Scott are Campbell’s source, and that the timing of the story around Wakefield’s return to face the music before the GMC is no accident.

Suddenly, the story becomes clearer. Andrew Wakefield is on a PR campaign to paint himself as the beatific hero of the piece and his two glamorous assistants are happy to sell out their study partners in order to help him. of course, this will also entail rehashing all the unfounded and non-scientific fears about autism and MMR just to muddy the waters a bit.

I am not surprised at Wakefield or his two cronies. But The Observer? I’m surprised to say the least.

Update from Ben at Badscience

Ben has received email from Fiona Scott regarding this. Her email reads:

I can respond to your question in terms of the following which will be the
formal press release available from the National Autistic Society:

The Cambridge University Autism Research Centre have not yet released the
findings from their prevalence study, as the study is not yet complete. The
Cambridge researchers are surprised that an unpublished report of their work
was described out of context by the Observer. They are investigating how
this report was made available to the Observer. They are equally surprised
that the Observer fabricated comments attributed to their team. They do not
believe there is any link between rising prevalence and the MMR, or chemical
toxins. It is untrue that Prof Baron-Cohen “was so concerned by the 1 in 58
figure that he proposed informing public health officials in the county “.
Such journalism raises anxiety unnecessarily and is irresponsible.

So it really does seem as if The Observer has out-and-out fabricated comments. Incredible.

Elsewhere

Autism Diva
Autism Vox
BadScience
Black Triangle
Mike Stanton
Public Address
Shinga
Tim Worstall
Tony Hatfield

What will change?

30 Jun

The first of the nine ‘test’ Autism Omnibus cases has wrapped up. This was also the first of the designated three that will attempt to associate autism with MMR _and_ Thiomersal causation.

In todays’ Wall Street Journal, Professor Roy Richard Grinker, author of Unstrange Minds wraps up what we’ve seen over the last couple of weeks:

Over the last three weeks, I listened to testimony in the first of nine test cases in the U.S. Vaccine Court (Cedillo v. Health and Human Services) considering the question of whether a mercury-based vaccine preservative called thimerosal (which used to be in many vaccines), or the MMR (Measles, Mumps, Rubella) vaccine, or both together, caused autism in Michelle Cedillo, the plaintiffs’ daughter.

I heard some of the world’s leading experts on autism, immunology, and vaccines testify that there is no biological model to account for an autism-vaccine connection, no scientific evidence or credible studies linking the two. They argue, instead, that autism is largely genetic. And yet just last week, Robert F. Kennedy, Jr., wrote in the Huffington Post that there are “hundreds of research studies” from a dozen countries providing “undeniable” proof that vaccines cause autism and Rep. Dan Burton (R-Indiana) wrote a letter to the president of NBC claiming that there is increasingly conclusive evidence that thimerosal caused an “epidemic” of autism. Scores of websites and autism advocacy groups are convinced of the connection, and the vast majority of scientists and physicians can’t understand why.

………….

The scientific testimony has been devastating to the plaintiffs because the recognized experts on autism, vaccines, and immunology do not support even one of these premises, let alone a linkage between any of them. The only thing the government and Cedillos agree on is that Michelle Cedillo has autism.

However, I can assure you that those who support the Cedillo’s – and the Cedillo’s themselves don’t see it like that.

I was able to attend the hearing on Friday.

As I sat in the court room and listen to the twisted bull generated by the defense, I wanted to scream out, “you have proof of what
thimerisol does in the human body-look at all these damaged kids.”

This was posted by Holly (I assume Bortfield) on the Yahoo EoH group. Her response typifies exactly why it won’t make one shred of difference to these people what the outcome of the Cedillo case is – or the other eight to come.

These are not people who are swayed by science. To them, decent, peer reviewed science is ‘twisted bull’. To them idiocy posted to JPANDS, Medical Veritas etc is gospel truth.

This court hearing revealed once and for all Andrew Wakefield’s deliberate falsification of science and the O’Leary labs accidental false reporting of negative samples. In the O’Leary lab it was sloppy science. In Wakefield’s hands it was knowingly ignoring evidence that showed his error plainly. Without Wakefield and without the O’Leary results there was no MMR association to autism whatsoever. That testimony alone is enough to sink the Cedillo case and all other MMR related cases that may come after.

But as Arthur Allen writes in Slate:

None of that moves Laura Wildman, 47, whose son’s case is before the court and who drove from her home near Pittsburgh to watch the hearing, which ended this week. “I know what happened to my son after he got his MMR shot,” she told me. “I have no doubt. There’s no way they’ll convince me that all these kids were not damaged by vaccines.”

At some point we may have to realise that what we are dealing with here is simply blind, deliberate ignorance.

Even the plaintiffs lawyers realise this. Here’s a telling quote from Michelle Cedillo’s lawyer:

The government position is backed by the overwhelming weight of scientific evidence, which has repeatedly found the vaccines safe. But what the Cedillos and other parents lack in hard data, they have made up for with a stubborn passion and sorrow that science cannot dispute. _”It is parents versus science,”_ said Kevin Conway, one of the attorneys for the Cedillos.

Parents vs science. Indeed it is.

The real sorrow here is that the Cedillo’s continue, in the face of all reason, logic and evidence, to passionately insist MMR caused Michelle’s autism.

On the Evidence of Harm yahoo group – and on various other Yahoo groups, the conspiracy theories are already being polished.

Theory one states that the media – bought off by Pharma – have reported nothing but science and dismissed the opinions of parents. This theory goes on to continue to suggest that the three Special Masters will be under the sway of the media.

Its true that the media have not been kind to the mercury militia. This is because there is nothing to write about in their beliefs except for the fact that they are beliefs. The science lies with Respondents.

Theory two suggests that the Special Masters are Pharma plants. Various members of the mercury militia are carefully combing through the backgrounds of these three Special Masters for Pharma connections they can wave about.

Will they ever let this go? Of course not. You cannot reason someone out of a belief they did not reason themselves into.

Lisa Sykes and Paul King: CoMed with a silent ‘y’

17 Apr

One of the more extreme quackery groups formed post-EoH is CoMed (the ‘y’ is silent) which is run by the Rev Lisa Sykes and Dr Paul King recently emailed a large group of people with a PDF Press Release that tried to make the case that autistic children were proven to be clinically mercury poisoned.

How did they reach this earth shattering conclusion? By stating that two papers and one methodology backed them up. Have a read of the document – its a fascinating example of how the militia attempt to ‘spin’ the reality of the situation and try to make things sounds like a given. Note the silent switch about halfway through from talking about ‘mercury’ in general to talking about ‘vaccines’ in particular.

Anyway, Sykes and King were good enough to note only post this press release on EoH but also to tell the group exactly who they had emailed – a motely crew, ranging from fellow whacko’s like David Ayoub to Governer Arnie “I’ll be back” Schwarzenegger, plus a host of journalists, lawyers etc.

So, I thought I’d better put these poor people straight and consequently sent them a letter. This is what I sent them:

Dear Madams and Sirs,

Firstly, please accept my apologies for the unsolicited email. I hope it is not intrusive.

I wanted to write to you as you were the recipients of a recent email/PDF press release from the group ComEd regarding their belief that ‘Autistic Children Clinically Proven Mercury Poisoning’. I wanted to offer an alternative to this erroneous belief. I will cite any references I make and I promise to keep this brief.

The ComEd press release uses two studies[1,2] and a technique as the ‘mainstay’ of its certainty that autistic children are clinically proven to be mercury poisoned.

The Geier paper [1] is an attempted replication of the Nataf paper [2] and suffers from its same substantial drawbacks.

Issue one: The role of precoproporphyrin.

Nataf et al claim that the presence of elevated precoproporphyrin is a specific indicator of mercury toxicity. They do this on the basis of three studies produced by one author[3,4,5]. When these studies are read properly, if we ask the question “Does exposure to heavy metals cause a relative elevation for certain porphyrin compounds in urine?” the answer would appear to be “Yes.” However, If we ask the question “Is the presence of certain urinary porphyrin compounds a specific indicator of heavy metal toxicity?” the answer would have to be “No”[6]

The Woods papers are interesting but far from conclusive enough for the Nataf and consequently Geier papers to reply on.

Issue two: Creatinine and the subsequent UPPA technique

In their press release ComEd claim that the UPPA (urinary porphyrin profile analysis) technique is a ‘highly accurate’ method of determining toxicity. Indeed, it is the method used by the Nataf and Geier papers. In this method, the urine of children is collected and analysed for the presence of porphyrin’s. If they are elevated then QED: the children must be metal poisoned.

Except its not as simple as that. The content, volume and dilution of urine varies considerably from patient to patient. The way around this issue is to measure a secondary constant element from the urine and compare the amount of porphyrins found against the amount of this compound and express the result as a ratio. This is what Nataf, Geier and the UPPA technique does. It utilises creatinine – a constant in urine – to provide a baseline figure and thus get an accurate percentage of porphyrins.

This is a standard way of measuring compounds in urine. The only issue is found when the population in question (autistic children in this case) are known to have significantly low levels of creatinine. Obviously, this would skew the results considerably and present a false reading of elevated porphyrins.

Is there recorded instances of low creatinine in autistic kids? It seems that there might be.

“Spot urinary creatinine excretion in pervasive developmental disorders” published in Pediatrics International[7], reports low creatinine levels in PDD:

a significant decrease in urinary creatinine concentration was found in the PDD group compared to controls using a Mann–Whitney two-tailed ranks test.

Of course, this just one study. Its a good start but thats it. But maybe its interesting that the group of maverick DAN! doctors (of whom one is treating Rev Sykes of ComEd’s autistic son I believe) also find low creatinine in autistic kids[8]:

“”Creatinine is often found to be marginal in the urine of autistics, and low creatinine can skew urine analyte results to high levels. So, also take note of creatinine levels if the laboratory results include ratioing to creatinine.””

I engaged in an email exchange with Professor Richard Lathe, secondary author of the Nataf paper[2] regarding the study his group had published and I questioned him at length regarding this creatinine issue. He said:

1.There was no significant decline in urinary CRT levels in any of the autism groups, though there was a non-significant trend to a reduced level. 2. Reduced CRT, and increased porphyrin, both appear to be markers of environmental toxicity.

However, neither of these observations were reported in the published paper. Lathe described it as ‘pointless’ to publish all data. I disagreed with him citing the uncertainty over creatinine levels and he conceded:

The long and short of it is that the response of CRT to different levels of heavy metal toxicity has not been studied adequately.

Which is a troubling statement considering that his paper required CRT to be well understood and to be functioning as described in order for the science in the paper to be accurate.

Lathe also conceded that other key parts of his paper (and consequently the UPPA method) were in doubt and relied on science that had been refuted and thrown out of court when attempted to be used in private prosecution[9]

The UPPA method has been in use for some time amongst adherents to the theory that mercury poisoning (notably from vaccines) causes autism. I have found numerous emails to a private access Yahoo Group called ‘chelating2kids’ which details peoples experiences with this method. Here are just three.:

1: “A fellow listmate had her son tested twice– once over the summer which showed he had no elevated metals, and one this fall that showed he did indeed have elevated metal levels. She has sent an email to the lab asking about the differing results and has not received a response. I believe she is still trying to contact them”

2: “FWIW, my neighbor’s dad happens to be a porphyrin specialist here in Boston (believe it or not– how many of those are there??). He reviewed lots of info for me– Nataf’s paper, my son’s results that showed very elevated metals across the board– and said he would have rejected the paper for publication had he been asked to review it. He said that fecal, not urine, should be used to measure the porphyrin levels. I sent an email to the lab inquiring about this and also received no response”

3: “I just received the results of the French porphyrin test for myself and my 7 year old NT [NeuroTypical – i.e. non autistic] daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!”

In closing, I would suggest that any assurances that mercury poisoning as a causative agent of autism are even likely, let alone ‘clinically proven’ should be taken with a very large grain of salt. I would also suggest that Rev Sykes role as an anti-vaccine activist and vaccine/autism litigant[10] are taken into account when considering the validity and motives of this press release.

Thanks for listening. My motive for writing this email is that, as parent to a severely autistic seven year old girl, I am sick to death of hearing bad science and media-driven misrepresentations attempt to coerce from autistic people what they truly need – decent, peer reviewed science which lead to good educational interventions for all autistic people. Thanks again.

References

[1]PubMed
[2]PubMed
[3]PubMed
[4]PubMed
[5]PubMed
[6]NotMercury
[7]Ingenta
[8]Google Cache of DAN! site
[9]Me
[10]Neurodiversity.com

I’ve had a number of fascinating responses, but my far and away favourite response was:

thank you for your email it has made it easier to apply you to my junk filter even though the junk file is far to good for the likes of you sir.

Which I received from one David Ayoub MD. The same man I publicly challenged to a web based debate less than two weeks ago on a third party letters page and who backed down.

Update: 18th April 2007

Dr King of CoMed produced a response to my rebuttal. You can read that here. and I couldn’t resist one more frolic through the CoMedy logic,as you can read here.

Harold L Doherty – at it again

26 Feb

Harold Doherty last week built himself an army of strawmen in order to demoinse the neurodiversity movement. I and many people left comments that were never published so I wrote the above linked post to demonstrate to Mr Doherty how illogical, ill-thought out and just plain old wrong his points were. He never responded but it seems Mr Doherty is never one to let a little thing like accuracy cloud his opinions.

Today I see a post entitled ‘Is The Neurodiversity Movement Ashamed of Lower Functioning Autistic Persons?’ to which the short answer is ‘uhhh, no – whatever gave you that idea?’

Luckily Mr Doherty proceeds to tell us what gave him that idea. Strawmen ++

It seems at times that the Neurodiversity Movement is ashamed of the lower functioning members of the autism world. Autism is defined by the ND movement as simply another natural variation of human wiring.

No it isn’t. That is one _aspect_ of what autism is.

“Autistic intelligence” is defined as a different, perhaps even a superior form of intelligence.

Might be. There seems to be good evidence for extraordinary mental skills in some autistic people.

Doubt is cast on whether lower functioning autistic persons even exist by the more strident ND’ers.

Really? Where? Who says that?

Even autistic persons who have demonstrated no communication skills, engage in seriously and repetitively self injurious and dangerous behavior should not be treated or cured in the view of the ND movement.

Ditto. At some point Mr Doherty you’re going to have to start _providing some sources_ – all this alarmist arm waving is mildly entertaining but ultimately just silly and self defeating.

Recently CNN’s Dr. Gupta featured the story of Amanda Baggs, diagnosed as being a low functioning autistic person, but clearly very intelligent and, with the aid of technology, an excellent communicator. The implied message – even low functioning autistic persons are really quite intelligent and do not need a cure or treatment.

Nothing at all was implied. It seemed quite clear to me. Amanda does not need a cure. I believe she has had some treatments of mixed efficacy at various points in her life. Your implication seems to be – and feel free to turn up and correct me if I’m wrong – that silly old Amanda can’t possibly know what’s good for her and she can have no empathy with other low functioning autistic people, whereas the Great Mr Doherty knows all. He knows for example that silly old Amanda doesn’t know what’s good for her.

Unfortunately Dr. Gupta played into this denial of the existence of truly low functioning autistic persons by continuing a long history of media focus on autistic savants and other high functioning autistic persons while ignoring the sometimes brutal realities which confront low functioning, seriously disabled, autistic persons.

Yeah, or maybe we could discard the conspiracy theory and conclude that this particular piece wasn’t about that aspect of autism?

My autistic son, Conor, is a low functioning autistic person who brings me great joy. I delight in talking about how happy he makes me every single day. But, unlike members of the Neurodiversity I am not ashamed to admit the severe challenges he faces in life and I am not afraid to talk about them publicly.

I wonder how Conor feels about that and whether Mr Doherty would care?

Anyway, the point is that no one I know is ashamed to admit the severe challenges autistic people face in life. In fact, that’s kind of the point. To highlight these kind of things. Here I’ll say it in the plain English that I reserve exclusively for people incapable of appreciating shades of grey:

Autistic people face severe challenges in life. I am not ashamed to admit this publicly. I am however, afraid to talk about them publicly because when I did, various people who wanted to cure their kids were vicious about her. So now I and my wife talk about her in a private closed access blog which is open to friends and family only.

Unless such public discussion takes place there will be no improvements for Conor and other autistic persons like him. Of course that is exactly why the Neurodiversity movement attempts to censor such discussion.

I love accusations of censorship that come from men like Mr Doherty who actively censor their own blogs and refuse to participate in debate. Its always good for a chuckle.

I _think_ Mr Doherty is alluding to the revulsion some of us have for Autism Speaks and their one sided propaganda piece ‘Autism Every day’. We don’t want to censor it Mr Doherty. We (all 748 – so far – of us) want to expand it to truly reflect the reality of ‘Autism Every day’. Not just the self pity bits. If you don’t want these parts included then I think you need to carefully look at how that holds up against your accusations of censorship.

Harold L Doherty builds a strawman army

18 Feb

I’ve been reading Mr Doherty for awhile now. He keeps a blog that discusses his views on autism advocacy and to his credit he stresses the importance of evidence based methods for helping his autistic son, Conor. This means he holds the vaccine/autism bull in as much disdain as I do.

However, this would seem to be the beginning and the end of his skeptical nature. He has, over recent weeks, been involved in a blog war with Michelle Dawson during which he claims (as far as I can see) that Ms Dawson is actively campaigning against ABA based therapies. Ms Dawson claims (with some justification) that what she is doing is suggesting that ABA is not the only methodology that helps. He makes occasional side references to this issue in the comments of blog posts such as this one in response to Kristina’s take on autism mythology:

Today, in place of Bettleheim, we have new forces ready to condemn parents of autistic children. Bettleim’s handiwork today is done by those who attack parents because they advocate for improved health and education of their autistic children and are accused of violating the human rights of all persons with autism by doing so. One hurtful urban myth gives way to another.

This was the first of Mr Doherty’s strawmen army that I noticed. I asked Mr Doherty to back up his position with a quote from someone actually doing that:

Could you provide an example of someone attacking parents of autistic people for advocating for improved health and education for the reason that these same people think that improved health and education violate human rights?

To which he answered:

If you want an example try this one, a comment attributed to Ms. Dawson in reference to parent advocates “they make me sick” is what she is quoted as having said

And he is correct, that’s indeed what she said. However, that wasn’t what I asked. I asked for a quote that showed someone attacking parents of autistic people for advocating for improved health and education for the reason that these same people think that improved health and education violate human rights, which Ms Dawson’s stated opinion clearly does not. Mr Doherty’s reply was:

I gave you a very obvious example. You simply refuse to accept the statement for what it is.

Which is just a new variation on the close minded doggerel.

Today I noted a new post from Mr Doherty. This post is simply one logical fallacy after another. He starts of by defining ‘Sirens’ for us as those who would seduce sailors to their deaths with sweet sounds.

Lets not forget that a siren is also that which makes a long, wailing, irritating noise.

Anyway. Lets address Mr Doherty’s first strawman:

Parents and families of children newly diagnosed with autism will face many daunting, at times overwhelming challenges. As the father of a soon to be 11 year old boy with classic Autism Disorder I have dealt with those realities for the 9 years since my son was diagnosed at age 2. One of the more seductive challenges that parents will face is the siren calls of those who oppose any effort to treat, educate or heaven forbid change an autistic child for the better. Do not listen to the sirens’ call.

This paragraph encapsulates the position of the rest of the post perfectly. It also reveals its weakness. It is simply a strawman argument. A regurgitation and expansion of his comment on Kristina’s blog. No one I know has ever opposed ‘any effort to treat, educate or change an autistic child for the better’. If Mr Doherty believes they have I would appreciate seeing supporting material or quotes. As has happened many times before, Mr Doherty is taking a very easy to understand proposition – that desiring a cure for autism is not analogous to respecting autistic people – and imbuing it with false exaggerations in order to demonise that position.

Here’s another example:

The sirens will outright mislead you and tell you that autism is not a disorder or a disability, that it is simply another variation in the human condition, neither good nor bad

Again, this is simply false. I personally tell people that autism is both a disability _and_ a difference. To pretend that being autistic cannot present one with disabling situations is ridiculous _so nobody I know presents it as a belief_. That includes Ms Dawson.

The sirens will not talk about such realities as lack of communication, self injurious behavior, or lack of awareness of potentially life threatening dangers posed by automobiles or broken glass. The sirens will not tell you that some autistic children are sent home from neighborhood schools sometimes in handcuffs or that they are sometimes housed in criminal detention centers for youths because no decent facilities exist in which autistic youths and adults with severe behavioral issues can reside. They will not talk to you about autistic adults residing in mental health hospitals.

Here we say Mr Doherty taking the ‘scattergun’ approach to logical fallacy. Just about every sentence in that scaremongering paragraph is fallacious. For example, its no secret that my daughter doesn’t speak. Ballastexitenz has a whole category regarding self-injurious behaviour. I have written more than once about the horrors that can happen when there is a lack of decent facilities for autistic youths and adults, as has Ballastexistenz, Mike Stanton, Kristina Chew and most of the online community Mr Doherty would think of as falling under the umbrella of ‘sirens’.

The attraction of the siren’s call is the attraction of sweet surrender. If a parent is told that their child’s autism is a beautiful thing, a joy to be embraced by the parent it will be easier to let go, to give up and to refrain from taking on the enormous challenge of doing the best that can be done for your child. It is not easy to raise, care for and educate many autistic children. It is absolutely one of the most rewarding tasks a parent can face but it is challenging, stressful and costly. It would be easy to give up and let go.

Here we have another old ‘ND’ logical fallacy – that accepting autism is the same as doing nothing. I can personally attest that this is laughably fallacious. What my wife and I spend most of our time on is raising, caring for and educating our children – including our autistic daughter. Mr Doherty’s implication that those of us who don’t believe in the things he does have have given up is a particularly cowardly and distasteful Ad Hominem fallacy.

Moving away from logical fallacies, Mr Doherty expresses what – to my mind – are gravely disturbing opinions regarding the nature of acceptance and moving on:

The sirens will tell you not to mourn for your autistic child, to accept your child’s autism; the will even tell you to find joy in your child’s autism. They will encourage you to accept your child as he or she is and not to seek to change your child.

Mr Doherty seems to be alluding to the essay ‘Don’t Mourn For Us‘ with this statement. If so it is an incorrect reference. Here’s what Jim Sinclair says about mourning:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity

Mr Doherty’s exhortation to wallow in grief seems to me to be the opposite of sense and practicality. There have been times in my life I have mourned friends and family who have died. I don’t believe it is healthy to try and force a relationship that is motivated or fed on grief. The autistic child is _still alive_ . To behave as if it is dead is not, in my opinion, a good thing for parent or child.

I would indeed heartily recommend finding the joy in your child’s autism. It is there to be found if you look. My autistic child is a delight. Yesterday was her 7th birthday and we had a great time doing the things _she_ likes. We didn’t have a party. We didn’t make her unwrap her presents. We didn’t have lots of people around. It was just the five of us. We did it that way as that’s what _she_ feels comfortable with. It was truly a lovely day. I don’t understand why Mr Doherty would rather (if I understand him) I turned these sort of days into a funeral dirge.

I would also like to once again quote from one of my favourite peer reviewed papers entitled: _”A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome”_. In this paper the authors have investigated the lives of families who have autistic members or members with Down’s Syndrome:

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

and

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

and

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

and

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

and

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

I hope Mr Doherty can one day stop constructing strawmen to fight his battles and can start to appreciate the truths he ignores.

Update

Mr Doherty failed to publish many of the comments I know he received. That’s fine – his blog, his rules. He did however make another post on the subject which I’ll reproduce below:

When I posted yesterday about “Neurodiversity’s” attempts to downplay the existence of severely autistic persons I expected, and received, some heated comments although some were civil and on topic enough to post. But none of the comments that I received acknowledged a central reality that the Neurodiversity movement seems ashamed to admit – that there are many autistic persons in the world whoin fact are severely disabled, who are dangerous to themselves and who require 24/7 care and attendance to ensure their safety. I am still waiting for one of the Neurodiversity advocates to admit these truths – but I am not holding my breath while I wait.

The ugly truth is that many in the Neurodiversity movement seem ashamed to acknowledge the existence of severely autistic persons – like my son.

Here we see yet more Strawmen. Mr Doherty has shifted from specifics – as he was challenged on them and obviously had no response – back to generalities. He now states that the neurodiversity ‘movement’ fail to acknowledge a ‘central reality’ – that there are autistic people who:

a) are severely disabled
b) are dangerous to themselves
c) who require 24/7 care

He claims he is still waiting for one of the neurodiversity advocates to admit these truths, but (put on a lofty tone of voice) ‘I am not holding my breath while I wait’.

Several times in my blogging career I have mentioned my great uncle. He died some years ago. He was born before 1920 and I never met him. He was according to his sister-in-law, my grandmother, severely disabled and whilst he was not considered dangerous he was adjudged to need 24/7 care which he duly received. He was occasionally self-injurious and during those times he was, I suppose, a danger to himself.

As I say, this is not the first time I have mentioned my great uncle. If Mr Doherty spent as much time researching the stated facts regarding those he chooses to misrepresent as he does constructing logically weak arguments then we might do away with all this silliness.

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