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, March 26, 2007

Harold’s Hillock: ABA, Equivocation and Other Feints

There’s a problem on Harold Doherty’s blog. It’s just about impossible to carry on a civilized conversation with anyone without Harold stepping in and ruining the reciprocal nature of it. Case in point, Harold had a post on the myth of excluding very low IQ children from the Lovaas 1987 study. I chip in with the fact that the myth isn’t a myth. Trouble is, I remember what I read really well, just not where I read it, so I can’t cite the reference. Harold dives in, and not just with a ‘please cite the reference’. Fortunately, Michelle blogs about it as a form of holiday from her Tribunal case, which is harrowing and giving her sleepless nights no doubt. So, I refer Harold to her blog for the proper references - and nothing happens. Harold won’t allow the post. OK, it does wreck the reciprocal nature of information exchange, but it’s not that big an obstacle, a hillock really, since I can blog about it on my own site. But, you must admit it’s annoying, especially when the matter is quite a bit more serious.

In the same post on Harold’s blog, I also made a reference to the Sallows and Graupner study demonstrating the random effect of the intervention (ABA) on the outcomes – a very important point. That interpretation of the data is much more in accordance with the facts than citing this study as a replication of Lovaas. So some helpful chap (Anonymous) writes a reply and with hindsight, I’m just not prepared to have yet another post disappear just to keep Harold in the fantasy world to which he has become accustomed.

Here’s what Anonymous had to say:

>>>alyric wrote that the paper demonstrates "that the therapy is not the critical factor in the outcome". I thought it might be important to recognise that both therapeutic groups DID recieve [sic] ABA based intervention. The authors note "All children received treatment based on the UCLA model" (Sallows and Graupner, 2005, p. 420). They also note (p 422) that some elements of PRT (R. Koegel and Koegel, 1995) were used while the work of Maurice, Green and Luce (1996) was also drawn on. <<<

True but not relevant, yet.

>>>Table 1 indicates mean hours of ABA for the two treatment groups to be 38.6 (Clinic-driected) [sic]and 31.67 (Parent-directed). during year one with similar hours for year two of the program.”<<<<<

Getting warmer, but just a tad misleading there and did not mean to be, I’m sure. The hours for the second year were 36.6 (clinic) and 30.9 (parent). There’s still a considerable gap. But, that’s not the only gap. The supervision regime is markedly different: 6-10 hours per week (clinic) as against 6 hours per month (parent).

>>>>If you look at the data reported prior to combining scores the clinic directed group of rapid learners that met criteria for best outcomes is close to 38% while 60% of the parent directed rapid learners met criteria for best outcomes. All recieved [sic]ABA intervention.<<<<

Exactly and with much less intervention and much less professionally supervised, you have markedly better outcomes. The difference between 60% and 38% is more than enough to do two things – bury this as a replication of Lovaas and cast considerable doubt that there is any correlation whatsoever between the intervention and the outcome. When data looks like this, one tends to think “random”. Another thing to keep in mind is that the clinic group also had an advantage on some of the variables that Sallows et al seem to think might be highly correlated with outcome, like IQ. The clinic group pre-treatment mean IQ was 60.4 compared to 51 for the parent group. VAB scores and verbal imitation scores were also significantly lower for the parent group compared to the clinic group. Didn’t do too well with that head start, did they?

>>>>One confound that may be at play that may account for some of the variance is alluded to by the authors when they report that parents "...were encouraged to to extend the impact of treatment by practicing newly learned material with their child throughout the day..." (p 420). It begs the question as to if the parents who were more engaged in "directing" home based programs were in fact also more inclined to extend therapy hours as they had a more intimate knowledge of programs? <<<<

Yes, they did say that on page 420, but they also said the following:

P432 – “Senior therapists rated parents on the percentage of involvement in their child’s treatment during the first year. Although the correlation with outcome, r = .32, was not significant.” That’s a very low level of correlation.

P434 – “First, ratings of parental involvement were weakly correlated to outcome.”

There’s a flat contradiction there and all the more puzzling because they had data to show that there was no correlation between parental involvement and outcome, so why try to use it to explain the good results for the parent group? But this is how they interpreted the differences in data between the parent and clinic groups:

“Parent-directed children, who received 6 hours per month of supervision (usually 3 hours every other week, which is much more than “parent managed” or “workshop” supervision), did about as well as clinic-directed children, although they received much less supervision.”

I think this is in the class of a ‘whopper’. They have such a huge amount of statistical data in this study and here we have 60% good outcomes being considered more or less equal to 38%.

Both the whopper and the contradictory analysis are worth a letter to the American Journal on Mental Retardation asking for an explanation, in the fond hope that there will be an erratum published at least for the whopper. By nature, I’m a pessimist.

>>>>The primary question the authors attempted to address seems to have been whether a Community based program could achieve similar results to what Lovaas (1987) did (without using aversives) (p419). If you think about it... the entire program, both parent directed and clinic directed service models, were in fact facets of the WEAP community based program... it appears that as such, they are pretty darn close to in fact achieving such outcomes.<<<<

Again that’s what they said at the start of the 2005 paper. However, way back at the beginning here’s what the title and abstract said:

Replicating Lovaas’ Treatment and Findings: Preliminary Results1

Glen O. Sallows and Tamlynn D. Graupner

Wisconsin Young Autism Project


Twenty-four autistic children completed the first year of a three-year replication

study of the 1987 research published by Lovaas. Changes in pre-post test

scores showed an average gain of 22 IQ points. Nineteen of the children

matched those in Lovaas’ study. Eight children showed a gain of 45 IQ points,

raising them into the average range. Gains in adaptive/social skills rose to the

low average range. These “best outcome” children represented 42% of the

matched group. Several factors related to outcome and its prediction are


Originally they were out to duplicate Lovaas’ findings and that’s perfectly OK. What is not OK is to change tracks along the way and not even attempt to address the discrepancies between their initial aim and their final results. Well, it’s not OK if this were a paper in a scientific journal. But I’ve said before, behaviour analysis does not use the methods of Science. I’ve also said that behaviour analysts tend not to learn from other areas in psychological research. This study demonstrates that apparently they cannot learn from their own research. Carrying on as if this study is nothing out of the ordinary does nothing to advance understanding; it simply ignores the discordant in favour of maintaining a very shaky status quo. There is another plausible explanation of the Sallows and Graupner results. Calling ABA simply a random factor is being nice. The data fits very well into the scenario that ABA is fundamentally antithetical to how an autistic can learn and impedes progress. Therefore, less of it will result in better outcomes, which is what they found. Are they going to critically examine what they did? I doubt it. This is ABA and the framework easily handles any empirical data. I’m not the only one who has noticed this predilection for equivocation in behavior analysis.

Is Behaviorism becoming a Pseudoscience?, by Jerome C Wakefield (2006) looks at token economies in the mental health system as an alternative to pharmaceutical approaches to managing schizophrenic patients. Apparently Wong, Midkiff and Wyatt lament that behaviour analytic management is cast aside in favour of pharmaceutical solutions. Here’s equivocation at its best (or worst).

“Bizarre responses, most notably psychotic speech, will at times resist contingency management procedures….or will spontaneously recover over time….or when training has ended.” Has any possible outcome been omitted here?

They go on:

“These results have been interpreted as showing that clients’ underlying belief systems have remained intact despite behavioral training.” No kidding!

And –

“However, multiform and persistent bizarre verbalizations can be parsimoniously viewed as generalized responses with a long history of intermittent reinforcement. After being positively and negatively reinforced by different people in various situations over many years, bizarre verbalizations could be overlearned responses that resist contingencies administered in circumscribed therapy sessions over mere weeks or months”. In other words, no amount of data is enough to disconfirm the behaviorist explanation and as should be really familiar, the therapy would have worked if they had had more time.

Wakefield points to the seminal and very long term study by Paul and Lentz, much cited in support of behavioural interventions in mental health. It appears to have the equivalent status to the Lovaas 1987 study. Uncannily, all the positive outcomes were due, not to reward contingencies, but to a draconian system of punishment – aversives. Aggression toward staff was met with 72 hours solitary confinement with manipulation of the environment to make it uncomfortable. The outcomes in Lovaas were contingent upon aversives as well, something that is rarely mentioned.

Paul wrote a critique of Wakefield's critique, which readers should look at. It looks to me like really high quality equivocation, but Wakefield did ignore some things, notably, the nature of the population in the study - a very big factor. This does not however, make up for lack of parity of reasoning or as another reviewer pointed out - the effects of the aversives, which Paul attempts to equivocate his way around.

Monday, March 19, 2007

A Siren’s Song of ALF

Alf, like the Naiads Harold Doherty refers to, is a mythical creature. Alf was born initially as a fundraising slogan on a coffee cup or some such on autistics.org and there he remained until a rookie reporter for the Times wrote a rousing if hastily researched piece on autistic advocacy citing Aspies for Freedom and the ‘Autistic Liberation Front’ (Alf). Harold found the article. The thing is, Alf, properly speaking doesn’t exist. The article, however, sparked one of those tangential forays familiar to spectrumites everywhere and Alf became flesh so to speak as a joke too good to pass up. [1] As is fitting with the lofty aims of the enterprise (think Che Guevara), Alf was conceived in the superhero mould. The fact that few of the participants had access to suitable costumes was brushed aside as mere quibbling. The result is, I think, impressive thanks to the Photoshop expertise of the resident legal eagle on Autadvo, Anne.

I don’t see Alf as a nymph in reverse drag. He’s a stocky character, balding, a slight paunch and a belligerent attitude. He’s not the sort who would bother with vocals on the Med. Far more likely, one would think, that if the occasion were sufficiently provocative, Alf would stride up in his workingman’s boots and deliver a kick where it might do the most good. This lot comes under the heading of serious provocation:

“ Those who oppose any effort to treat, educate or heaven forbid change an autistic child for the better. Do not listen to the siren’s call”. Or…..

“ Parents who seek to help their OWN children, not the ND’ers themselves but their own children, through attempts at cures are vilified by the ND movement.[2] And….

“ They [the sirens] will not help teach him/her to speak and read and brush his/her teeth.”

It’s hard to know where to start. “Cure” is something that implies that there was a biological something to be got over. We don’t as yet have a biological anything that points to the aetiology of autism and therefore an unequivocal path of intervention. We do know that there are a lot of autistic children who were apparently ‘cured’ with a variety of different treatments including biomedical interventions, chelation and ABA. Who to believe? I think no one, at this point in time. Anyone promising ‘cure’ had better take note of this article, which points out that these kids are as autistic as they ever were, which begs the question – are middle-schoolers more perceptive than ABA therapists, chelationists and peddlers of biomedical nostrums?

I think there is a case to be made that taking the ‘medically necessary’ path to clamouring for funding for interventions for autism may have been tremendously short sighted. It’s just too easy to shoot holes in the argument and that’s without getting into the demonisation of the entire spectrum to up the pity factor as far as possible, which has some interesting consequences - like wrecking your child’s future in advance, so why did they bother in the first place.

The argument for ‘treatment’ is better than cure but again, no one that I know of is against treatment per se. The whys and the wherefores however, might be up for debate. Though why that should incense Harold is mystifying. Surely if he’s pushing the position that his ABA should be mandatory, note, not optional, then he’s going to get a debate, like it or not. Best to start here with the things that Harold is convinced that some people don’t want autistics to learn, like to speak, to read and brush their teeth. It a pretty good list on the whole because it covers most of the situations, where to put it bluntly ABA would be in my view, not necessarily the optimal method for achieving one’s goals.

Dr Morton Ann Gernsbacher of the University of Wisconsin has this wonderful little article laying out beautifully the difference between speech and language. There is one. Just because you can’t say it, doesn’t mean you don’t know it. Speech is merely the physical manifestation of language. While it may be the most convenient form of communication, it is not the only means by any stretch of the imagination and for those who have difficulty in the production of speech, it may well be that it is a form of apraxia - the mind is willing but the muscle is weak. No amount of M&Ms will remedy this situation. What one hopes for is a therapist with enough know how to recognise that situation and how to remedy it. If this is an otherwise normal kid, the therapist would most likely be a speech language pathologist. If this is an autistic kid, the therapist could be an ABA trained therapist. The interesting thing about ABA therapists is that their academic background does not qualify them for a Bachelors or Masters in Science. There’s not enough Anatomy, Physiology, Neuroscience etc in their academics so they are awarded Degrees and Masters in Arts [3]. This is a serious issue and what, I wonder, are FEATBC and assorted affiliates about in mandating a therapy as ‘medically necessary’ when the therapists have such a dearth of biological knowledge.

The other consideration with language remediation is the proliferation of Verbal Behaviour (VB) programs. The application of behaviour analysis principles to the acquisition of language has no empirical support in the literature as Mark Sundberg pointed out as recently as 2005. The manufactured jargon of it was tackled rather nicely by Noam Chomsky in 1959. Here’s what he had to say about the mand in light of behaviour analytic logic:

“a speaker will not respond properly to the mand Your money or your life (38) unless he has a past history of being killed.”

Why a rational human being would choose ABA to remedy a deficit in speech is lost on me. The basis of ABA is not nearly as sound as its practitioners make out, but I’m not about to repeat myself here. On a brighter note, consider this from jypsy as a sterling example of how to tackle problems in communication. It’s a beaut and one I hope gives lots of parents encouragement to find many ways of communicating with their autistic children.

“With the consistent and enthusiastic support of Alex’s teacher assistant and parents, Alex entered Grade 1 at Gulf Shore in September 1993, with the ability to use all of the following means of communication—sign language, gestures, Canon Communicator, picture communication symbols, infrequent vocalizations and an immerging ability to print words”

The second skill that Harold insists that folks don’t want autistics to learn is how to read. His irony meter must be broken. I’m hyperlexic myself and this idiosyncrasy is apparently as common as dirt on the spectrum. Not mind you that the level of reading skill is at the same level of comprehension. No, it is not but I suspect that too much is made of the disparity to protect those normal folks out there. Hyperlexia aside, which is nothing more than an enhanced ability to spot patterns, there are many issues here. What do you do with spectrumites for whom language is a foreign language? One might argue that breaking language tasks down into small bits might be of benefit, but there are two problems with this approach. Primarily, there is no evidence whatsoever that this is the case for autistics, and I might add somewhat forcefully that ABA is never going to contribute to the answer. Secondly, breaking things down into small bits is emphatically, the opposite of how a hyperlexic can learn. If deciphering patterns is a common gift of the spectrum, then spectrumites need access to enough bits of information to detect the inherent pattern. That much must be obvious and it should be equally obvious that assuming that the bit by bit approach has merit may lead to an awful lot of damage, given the ages at which this intervention is used.

This bit by bit approach to tasks is I think an artefact. The Skinner box for training rats and pigeons and the minimalist environments for training humans that ABA therapists use are one and the same. Pigeons are taught to perform a figure of 8 pattern by careful shaping of a series of approximations to the desired behaviour with copious amounts of reinforcement at each step. It is an assumption of gargantuan proportions that humans benefit from a similar regime and not simply for performance of a single task but for learning in general. Where is the evidence?

The third factor in Harold’s list of things that some folks would not like autistics to learn is cleaning their teeth. This skill one could postulate as the exemplar of a whole range of similar skills and the sort of thing for which ABA might truly be useful just so long as there are no confounding biological factors including sensory hypersensitivity. It is fact that contrary to the testimony of autistics, ABA takes no account of the effects of sensory issues such as the effect of the brush and the level of mintiness in the toothpaste as well as its texture (is this more or less burning to an autistic sensibility?). Sensory issues aside, I have it on good authority that for performance of a task, breaking things down into a sequence would be very beneficial [4]. The point here is that breaking things down into the component parts of a task might be important if the task has a motor component and apraxia is an issue. Otherwise, who knows?

It should be clear by now that I don’t have much of an opinion of ABA and the argument that we should not be against it because that’s all we’ve got is pretty empty. The folks using this tactic tend to assume that the therapy is harmless. That is probably not true according to the current literature. The problem I have with ABA is mostly around the concept of reinforcement. No matter what the therapy or procedure that ABA therapists adopt from elsewhere, and they have co-opted just about everything in the parents handbook, they always import reinforcement. Because that’s what makes it ‘work’. Most of their undergraduate career is spent learning to construct increasingly sophisticated schedules of reinforcement. The literature says that rewards (reinforcement) can seriously undermine learning – it’s called the “Overjustification Effect” and applies to adults as well as children. When you reward performance extrinsically, you remove the intrinsic reward – the kick you get from the sense of accomplishment. Now consider the average ABA program – and the kid is in there 8 hours every day. What chance that his learning has been seriously derailed by an unrelenting regime of rewards? The answer is that we don’t know with certainty, but there’s certainly a risk there especially apparently if the rewards and this includes the whole range of food reinforcers, do nothing to improve the perception of competence on behalf of the learner or are perceived by the learner as controlling, which includes all of the reinforcers in the behaviourist arsenal. That’s one sort of harm.[5]

There are others, particularly of the sort that are generally unavoidable when therapy is used as a substitute for education. Note, the therapy may be utterly necessary, but the necessity does not mitigate the effects, though a lot of parents like to put a gloss on it. A couple of my favourite glossy bits are as follows.

This is a parent’s view of ABA: “a structured setting in which a trained professional can work with Jason on staged but natural terms that makes sense to him and that he can generalise to other places and times.” Nope, this is not an artificial situation, if we get to call it natural, but then so are schools. ‘There are, however, some grand assumptions and inconsistencies in that short sentence.

From the same parent: “Jason also spends about thirty minutes of the two-hour session leading the activities by selecting what he wants to do most.” The parent earlier informed us that the activities are selected by the therapist, which is just fine but this then becomes a really lousy example of promoting self-actualisation.

Harold talks about changing ‘an autistic child for the better’, a prospect that concerns me not at all, since it’s practically impossible to change anybody, though it would be interesting to speculate what exactly he means by that. This sort of rationale reminds me of Douglas Adams line: “If you try and take a cat apart to see how it works, the first thing you have on your hands is a non-working cat “ - ditto for autistic child. What is it about the child that should be changed? Is there some measure of ‘normal’ available for comparison, because let’s face it - “normal isn’t necessarily wonderful” [6]. Here’s a normal mother, a perfectly nice and loving parent I might add talking about her clever autistic daughter.

“Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.”

Her critical thinking skills may be normal but I wouldn’t want anyone else to learn them.

What is truly baffling about this paragraph is the complete disregard for a lot of learning –Why? And the substitution of ABA - for what? The question needs to be asked. Why couldn’t the therapist or the parent latch on to the ways this kid has so obviously demonstrated learning – real learning, no facsimile and use that tried and true method to have the child learn whatever else they think the child needs to learn? After all, it obviously works. Strange, but this isn’t a singular phenomenon. Michelle wrote a great piece on the above and added the testimony of a Canadian MP. Same thing, a clever child learnt all sorts of things but take a look at what this bloke considers the acme of learning goals?

“He's now one of the most amazing kids -- he will look you in the eye and he will understand you when you ask him to do something.”

Imagine the outcry there would be if this philosophy was applied to the educational system. Autistic kids get a different standard and there are, I suspect, one large and a multitude of little reasons for that. The major reason is that what the autistic child does not do and what Mr Lake referred to specifically is ‘look you in the eye’. In other words there is no automatic emotional response or acknowledgement of the parent in a way that the parent would interpret as such. Every ABA program out there starts with the teaching of eye contact on the principle that joint attention and compliance, both signalled by eye contact, are the keys to learning. They may very well be, for a typically developing child, but we have it on very good authority that this may not at all be the case for autistic children, far from it. It is becoming quite clear that autistic perception is a different breed of normal and that by and large it is super sensitive. The face is apparently such a busy landscape that paying attention to both it and doing anything else simultaneously may be impossible. Pushing for this sign of normal may be the worst thing you could do, no matter that it fulfils an emotional need of the parents. One could conclude that the towering edifice of ABA therapy is built on a total lack of empathy. Empathy is, after all, the ability to imagine things from someone else’s perspective.

So there it is. I am not ant-ABA, which smacks of blind opinion with nothing much in the way of foundation, so much as very critical of it. Something that completely escapes the zealots and idealogues like Harold, is that things don’t change unless there’s a concerted push. So a therapy like ABA, which doesn’t have an empirical leg to stand on, is propped up and continues to be propped up by parents traumatised into overlooking its gross deficiencies for lack of an alternative. At least that’s what they’re led to believe. Though it needs a fair amount of drastic surgery to make it a better fit for autistic learning and sensibilities, it has some things going for it, like structure and single therapists rather than processions of them, making the environment more predictable. It would be better if the structure imported what we know of the learning and perceptual styles of autistics and ABA is not well suited to learning from other professional areas – too insular by far and they aren’t scientific so they’ve always got that internal handicap. It makes the parents feel that they are doing something. It’s great for the kids that the parents now have ‘expectations’, whereas before it was mostly worry.

As for the ‘canard’ of doing nothing, I’m fairly amazed that Harold threw that one into the ether. But that’s a lawyer for you. If you don’t have the facts, play the person. It usually obfuscates the issues for a while. But this is not a court of law with a memory span limited to the case in question. Not at all a good strategy as we know from experience, with a great tendency to backfire.

End Notes

1. Poor Harold. I doubt that he’s capable of understanding that lots of folks might find the concept of a liberation front, with all the sequelae of power plays, prosetylising, slogans and propaganda, faintly ridiculous. But then he hasn’t had the benefit of DKM’s wisdom. Here’s David K March on a very similar concept – Aspergia.

From what I can see, this "Aspergia" thing has a 350-degree

blind-spot. It's self-absorbed, self-indulgent, and reckless in its potential effects for those of us who have no choice but to function in NT society. I don't want to be "represented" by these people any more than I want to be "represented" by Dr. Skulldug Fraudulini, Psy.D.”

Frankly, if there were such a thing as an Autism Liberation Front, it’s not likely that I’d be among the membership.

Editorial note: The link to the pic of the ALF was removed temporarily until I checked that it would be OK to provide a link. It is in the public domain.

2. There is no person alive who could be said to be an ND’er, unless you happen to believe in multiple personalities, which I don’t. A single person cannot be neurodiverse.

3. This is worth a post all on its own. I was thunderstruck, appalled, amazed and a whole lot of other adverbs to find just how unqualified ABA personnel are to deliver any kind of therapy involving biological attributes.

4. Amanda Baggs of the blog ballastexistenz said to me once that this was important for her, so I would guess that it is important for a lot of autistic folks though maybe not everyone of them and maybe not for every task. I’d like to go back in history and unearth Tolman, who made the very important distinction between learning and performance.

5. Consider the reports of parents about their children falling apart without their ABA program. That could quite literally be true. The thing about etching new pathways in the brain, rewiring, that ABA practitioners like to allude to, is that some paths are rather easily laid and very difficult to eradicate. This is pure speculation, but I did wonder when I heard some of the reports. Addiction medicine tells us that addiction, correctly speaking is the etching of the dopaminergic pathways in the reward system of the brain. Specialists recommend drugs like naltrexone to assist the withdrawal phase. If, as seems quite plausible, these kids have become addicted to rewards, then perhaps they need medical assistance to get over it.

6. Dinah Murray’s line.

Friday, March 02, 2007

Conduct Unbecoming a Reverend

Dear Bishop Kammerer

I note that the Women’s Division is hosting a conference on June 6 –7 2007 to address the issue of mercury poisoning through vaccines and that the Division has voted $5000 towards this project. I would imagine that the impetus for this educational effort comes from Reverend Lisa Sykes through her experience with her son’s autism, which she attributes to mercury in vaccines. It appears from your website that this issue is being framed as the traditional David versus Goliath, with the United Methodist Women’s Division firmly in the role of protecting the weak and the vulnerable from the machinations of powerful interests. Appearances can be deceptive.

Reverend Sykes is a fervent proponent of the “Lupron Protocol”, a means of treating autism in children by blocking the synthesis of steroid hormones, a form of chemical castration [1]. This theory is the invention of Dr Mark Geier and his son Mr David Geier, who have taken out a patent on the Protocol [2]. Reverend Sykes plays a prominent role as a member of the Institutional Review Board (IRB) overseeing the Protocol [3]. My purpose is not primarily to debunk this theory, but to point out that the deconstruction of this piece of pseudoscience necessarily casts the behaviour of Reverend Sykes in a very poor light. Her conduct in this enterprise appears to be incompatible with her calling.

I should emphasise that I am not impugning her motives. With no doubt the best of intentions, Reverend Sykes has spent considerable time touting this treatment at ‘alternative’ autism conferences and other venues.[4] Her faith in this remedy is such that she enrolled her son as one of the first patients for this novel treatment protocol. Her faith in the matter, however, is not informed by anything called scientific research or mainstream medical opinion.

The “Lupron Protocol’ rests squarely on three unsupported assumptions; that autism is a species of mercury poisoning through the past use of thimerosal preservative in vaccines and that mercury is trapped in the body by forming sheets with testosterone. Following from these assumptions, removing the mercury from the body (chelation) does not work because the high testosterone in autistic children (hyper-androgenicity and assumption three) effectively prevents its being removed, particularly from the brain. But, by lowering the level of testosterone through chemical castration (Lupron injections), chelation can do its job. There is no sound peer reviewed evidence that mercury in thimerosal at the levels given in vaccinations has ever harmed anyone or caused autism. A recent Daubert hearing at which Dr Mark Geier was the expert witness noted that:

It is also significant in the review of his methodology that Dr. Geier could not point to a single study that conclusively determined that any amount of mercury could cause the specific neurological disorder of autism. [5]

The Institute of Medicine of the American Academy of Sciences in their 2004 comprehensive review stated that there is no evidence of any link between autism and the mercury preservative thimerosal in vaccines [6]. The second pillar of this protocol, namely the claim of the Geiers that testosterone traps mercury in sheets, is fraudulent [7]. The reference they give refers to the preparation of a pure crystal for the purposes of crystallography. It has never been demonstrated that this reaction occurs in the body at 37 degrees Celsius, though it may occur if you first dissolve your autistic child in hot benzene. The third assertion that autistic children are inclined to hyperandrogenicity is at this point, an unsupported hypothesis. There is no cited evidence that they are and good evidence that they do not have higher testosterone levels than do other prepubescent children. A recent study from the National Institutes of Health concludes that:

Levels of adrenal hormones were not impressively different between the autism/ASD and control groups. This suggests that earlier sexual maturation is not the explanation for our results [8].

Given the shaky foundations for this Protocol, wise counsel would have questioned the immediate use of a powerful chemical castration drug, Lupron, on children, based on what is at best, a flimsy hypothesis. It is apparent that Reverend Sykes in her zealous pursuit of treatment for her son has been able to ignore far too many signs of dishonesty and blatant deception.

The most obvious of those and of greatest concern ethically is the composition of the IRB overseeing the Lupron Protocol [9]. This IRB is composed of three members of the Geier family, a business associate, a dental hygienist, a lawyer and the Reverend Lisa Sykes, whose son is one of the research subjects. The guidelines set down for an IRB are explicit:

Each IRB shall have at least five members, with varying backgrounds to promote complete and adequate review of research activities commonly conducted by the institution. The IRB shall be sufficiently qualified through the experience and expertise of its members [10]

Contrary to those guidelines, there is no member with the requisite expertise in Biochemistry, Paediatrics or Endocrinology, the three fields that should be represented in hormone research in children. The rules covering the composition and function of IRBs, are there to impartially guide research and safeguard the human participants. That these rules have been flouted is obvious in that only two members of this IRB are eligible to vote to approve the research, the dental hygienist and the lawyer, and then only if they are clear of conflicts of interest. The others are barred because of their being family members, research participants or having a vested financial interest in the outcome. Reverend Sykes should be asked to explain her presence on an IRB, which, as constructed, cannot fulfil its legal and ethical obligations to its young experimental subjects.

There is a second irregularity with this IRB. Dr Mark and Mr David Geier published the preliminary results of their Protocol in an article in Hormone Research [11]. The article cites their IRB as having approved the research. However, it appears that the IRB was only established in March 2006 and the research that it was supposed to oversee took place between November 2004 and November 2005.

There are many irregularities in the administration of the Lupron Protocol, which could not have occurred if the IRB was a duly qualified body. The sole use of Lupron in children that is approved by the US regulator is for the rare condition of central precocious puberty. The insert for Lupron states that the diagnosis should include the following

2. Clinical diagnosis should be confirmed prior to initiation of therapy:

• Confirmation of diagnosis by a pubertal response to a GnRH stimulation test. The sensitivity and methodology of this assay must be understood [12]

The pre-testing of autistic children for the Protocol as carried out by the Geiers and meticulously documented by Kathleen Seidel [13] runs to between $ 7,000 to $10,000 and includes some esoteric genetic tests, which are currently experimental. It does not include a GnHR stimulation test. The test, which is crucial to the diagnosis of central precocious puberty and for the monitoring of treatment [14] is missing from the testing array of these autistic children. Incidentally, the usual work-up for central precocious puberty, which does include a GnHR stimulation test cost around $650 in 1999 [15].

As already stated, Lupron’s sole FDA approved use in children is for treating central precocious puberty. But, Dr Geier has ‘branched out’ as he put it and in his own words urged health insurance companies to pay for Lupron because it is also used to treat serial sex offenders.in the criminal justice system. Here is Dr Geier at the U.S. Autism and Asperger Association (USAAA) conference. [16]

what we’re trying to do is get rid of their aggressive behavior so the parents can keep them, because the state keeps saying they’re going to take them away. Now here, we’re not on new ground. The state does this a lot, and in fact, knock on wood, so far, I’ve gotten every health plan — we’ve got about eighty kids — we’ve gotten every health plan to pay for the Lupron. While on the fourteen-year old it was interesting. They said, “we can’t pay for the Lupron, he doesn’t have precocious puberty, he’s fourteen.” And I said, “I didn’t write he has precocious puberty, I wrote he has hyperandrogenemia, high testosterone.” And they said, “we never do that.” And I said, “Oh really? Don’t you have any eighteen to twenty year olds that the court orders —” “Oh yeah, once a month.”

Autistic children can be treated as sex offenders apparently. The branching out has also included major changes to the Lupron protocol that is recommended by the manufacturer. Some of these children are getting twice the recommended Lupron depot shots (given every 14 days instead of 28 days), plus daily sub-cutaneous Lupron shots plus Androcur, an androgen antagonist not FDA approved for children, because it has been largely replaced by Lupron.. But none of this is recommended for children nor could ever be recommended for children in any country, which has a functional child protection service. I would urge you very strongly to find a paediatric endocrinologist in your area and get his opinion on the ‘Lupron Protocol’ as practiced by the Geiers. [17]. You would have to add that none of the autistic children undergoing this drastic treatment has a diagnosis of central precocious puberty or hyper-androgenicity. The test that is crucial to that diagnosis, the GnRH stimulation test, has not been done.

Reverend Sykes has also acted in an editorial capacity for Dr and Mr Geier, who expressed their gratitude on page 5 of Early Downward Trends in Neurodevelopmental Disorders Following Removal of Thimerosal-Containing Vaccines. [18] That article consists of two parts. The second part is practically a verbatim plagiarisation of the draft manuscript by Verstraeten et al, titled Risk of neurologic and renal impairment associated with thimerosal-containing vaccines, which is in the public domain on the Safeminds website. [19] No special expertise is required to spot the gross similarities. Worse, Reverend Sykes is very familiar with the contents of the Verstraeten manuscript having cited it in her own work as an autism advocate. [20]

The link between autism and mercury in vaccines has been promoted by Dr Mark Geier and his son David in six articles based on the contents of two government databases, the Vaccine Adverse Events Reporting System (VAERS) database maintained by the CDC and the California Department of Disability Services (CDDS) database. Reverend Sykes and other zealots of a similar persuasion choose to ignore the warnings issued by the CDDS and the CDC about the limitations of these databases. The American Academy of Paediatrics wrote an article outlining in considerable detail the ways in which Dr and Mr Geier have misused the VAERS. [21] For a scholarly article it is just barely polite. The Geier’s interpretation of the CDDS data has been similarly exposed as a species of statistical malfeasance. [22] The organisers of the June event should be aware that the CDDS data, if interpreted correctly, continues to refute the notion that there is a link between autism and mercury in vaccines. Though mercury has been removed from the standard childhood vaccine regime for many years, the number of 3-5 year olds with autism continues to increase. [23]

In the ordinary course of events, I would have been loath to become involved in criticising a parent for her attempts to do the best by her child, even when I would have disagreed vehemently with her conclusions. That was certainly the case up to the point when Reverend Sykes started championing the Lupron Protocol and extolling the Geiers as bona fide researchers in the field of autism. There are two basic reasons why this is unacceptable. Primarily, a Christian minister is engaging in behaviour, which is potentially harmful to children, in direct violation of her sworn promise to look after the vulnerable. Professor Simon Baron Cohen of Cambridge University assessed the risks as follows.

I am aware that the Geiers are citing our work to justify their treatments involving lowering testosterone levels in autism. I have never advocated for this treatment, and indeed am opposed to such treatments on two grounds: ethical (manipulating hormones affects many systems in the body and mind, many of which do not stand in need of ‘treatment’) and safety (such treatments may carry risks, many of which are unquantified).[24]

Secondly it appears that this leader of a Christian community is perfectly capable of any amount of moral relativism in pursuit of a personal goal.

Of minor importance, the Reverend Sykes is disseminating, quite unconsciously along with her proselytizing of the Lupron Protocol, the notion that to be Christian is to be credulous. I look to the governance of the Uniting Methodist Church to bring one of its own back into the fold.


Background and References

1. A comprehensive review of the Lupron Protocol by Ms Kathleen Seidel can be seen here: [reference: http://tinyurl.co.uk/jyeo]

2. Patent application: [reference http://tinyurl.co.uk/akzr]

3. Membership of the IRB:[reference: http://www.neurodiversity.com/geier_irb.pdf]

4. The video presentation given by Reverend Sykes: [http://www.autismmedia.org/media4.html].

5. Transcript of a recent court case for which Dr Mark Geier was the principal expert witness. [http://www.neurodiversity.com/court/rhogam_decision.pdf]

6. IOM review: [http://newton.nap.edu/catalog/10997.html#toc].

7. Their theory that testosterone forms sheets is discussed in some detail here: [http://www.autismmedia.org/media4.html: Part 2)] The reference that they rest their theory on is here: [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=5756987&dopt=Abstract]. This is the method for preparing a mercury chloride compound of testosterone for crystallography, which combines equimolar amounts of testosterone and mercury chloride in hot benzene, not something that happens at body temperature.

8. The biochemical rationale that the Geiers use for their theory of hyperandrogenicity is that ASD children with low glutathione do not convert DHEA to DHEA-S and since alternate pathways are blocked, they convert their steroid precursors mostly into testosterone. The NIH study Elevated Levels Of Growth-Related Hormones In Autism And Autism Spectrum Disorder, J. L. Mills, M. L. Hediger, C. A. Molloy, G. P. Chrousos, P. Manning-Courtney, K. F. Yu, M. Brasington, L. J. England, casts considerable doubt on this hypothesis [http://www.cevs.ucdavis.edu/Cofred/Public/Aca/WebSec.cfm?confid=238&webid=1245]. The authors found that ASD children are in fact twice as likely as controls to have detectable DHEA-S. The innocent explanation for not producing DHEA-S is simply the prepubescent status of children.

9. IRB composition: [http://www.neurodiversity.com/geier_irb.pdf]

10. Guidelines for IRBs [http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm#46.107]

11. Geier, M, Geier D - A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders [http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ProduktNr=224036&Ausgabe=232055&ArtikelNr=94467].

12. Manufacturer’s directions: [http://www.fda.gov/medwatch/safety/2006/Feb_PI/Lupron_PI.pdf]

13. [http://www.neurodiversity.com/weblog/article/110/]

14. Margaret L. Lawson and Nini Cohen, A Single Sample Subcutaneous Luteinizing Hormone (LH)-Releasing Hormone (LHRH) Stimulation Test for Monitoring LH Suppression in Children with Central Precocious Puberty Receiving LHRH Agonists, The Journal of Clinical Endocrinology & Metabolism Vol. 84, No. 12 4536-4540 [http://jcem.endojournals.org/cgi/content/full/84/12/4536?ck=nck].

15. [http://www.aafp.org/afp/990700ap/209.html].

16. [reference: Kathleen Seidel: http://neurodiversity.com/weblog/article/114/pharmaceutical-cornucopia]

17. ibid.

18. [http://www.jpands.org/vol11no1/geier.pdf]

19. [http://safeminds.org/legislation/foia/VSD_VerstraetenJune2000.pdf].

20. [http://www.fda.gov/OHRMS/DOCKETS/dailys/04/nov04/111504/04p-0349-sup00001-vol1.pdf].

21. [http://www.aap.org/profed/thimaut-may03.htm]

22. [http://goodmath.blogspot.com/2006/03/math-slop-autism-and-mercury.html; and also here: http://interverbal.blogspot.com/2006/03/review-of-early-downward-trends-in_15.html]

23. There are multiple references on the web to the CDDS stats. This blogger does a very thorough analysis every quarter. http://autismnaturalvariation.blogspot.com/2007/01/hell-fails-to-freeze-over.html

24. A perwonal communication to Ms Seidel. http://neurodiversity.com/weblog/article/107/

email addresses for UMC

weitzel_chris@hotmail.com, EstellePruden@vaumc.org, cooperd@umumr.org, jwinkler@umc-gbcs.org, bmefford@umc-gbcs.org, newsdesk@umcom.org, judicialcouncil@umc.org