A recent news segment on NBC in America covered Chelation therapy as a treatment for autism. The response was as predicted. The pro-cure/biomed side went into raptures. Everyone else winced. As a UK resident I have to say that (sorry America) this seems to be a furtherance of the dumbing down of science in the US that has led to both this sort of report appearing on a serious news show and the joke of creationism being taught in science classes.
Anyway, thankfully, these types of things are still viewed by most people (over there and over here) as marginal and not representative of the truth. However, that doesn’t negate the fact that there is a lot of experimentation going on by so called ‘scientists’ and by some parents. My favourite quote so far from some retorting to the Dateline segment is:
A treatment used prior to proof is called an experiment.
ACSH.
So what can be said to be poorly understood and yet still be used?
Lupron for Autism
I recently had an interaction with a number of people on an Autism Biomed board after they stated that Lupron was ‘working miracles in recovering my child’. At least one of these people was someone who had assured me about a year ago that chelation was ‘working miracles in recovering my child’. A part of me fully expects to hear that car battery acid is ‘working miracles in recovering my child’ from the same person a year from now. After that? Tongue of Toad? Eye of Newt?
It was clear that the ‘scientists’ advising these people had not informed them of basic facts about the condition that was allegedly affecting their kids autism. Neither of them had had their childrens hand and wrist radiographed which is the standard way of determining if a child is undergoing Precocious Puberty or not. Basically, If bone age is within 1 year of chronological age, puberty has not started. If bone age is advanced by 2 or more years, puberty likely has been present for a year or more or is progressing more rapidly.
The single most basic fact about Precocious Puberty is that it is immediately subdivided into Central Precocious Puberty (CPP) or Pseudo Precocious Puberty (PPP). It is vital to make this difference as the treatment is different in each division. The division can only be made by testing for premature activation of the hypothalamic-pituitary-gonadal axis. When I asked one of these people if the Geiers (yes, it was they) had subcategorised into CPP or PPP they did not know what I was talking about. They were entirely ignorant of these terms. It was clear neither of the two people I had spoken to had undergone this sub-categorisation.
They claimed it was ‘enough’ to ‘know’ that their children had excess testosterone. One of these children is female. This child’s parent was utterly ignorant of the fact that excess testosterone in females was not called ‘precocious puberty’ but indicative of ‘Androgen excess’. Lupron is not mentioned as a treatment for Androgen Excess.
One other interesting fact about increased testosterone is that in patients diagnosed with PPP, this can result from an excess of vitamins and other dietary supplements. Its common knowledge that this is a common part of DAN! and DAN! style treatment regimes. Yet again, the Geier’s patients parents were entirely unaware of this fact.
Sources
http://www.emedicine.com/ped/topic1882.htm
http://www.emedicine.com/PED/topic1881.htm
http://www.androgenexcesssociety.org/signs.html
http://www.healthatoz.com/healthatoz/Atoz/ency/sex_hormones_tests.jsp
The Role of Creatinine in Relation to Porphyrins and Chelation to Creatinine
I’m not going to go over this subject as well as Not Mercury recently did but I want to highlight a few key concepts from that paper that it seems the authors either missed or didn’t account for.
The paper’s essence is that it is significant the their are elevated levels of Porphyrins in autistic kids. However, they fail to account for the likelihood that this is a false elevation. The study attempts to measure the amount of porphyrins in the urine of their subjects. However, because collecting urine of a standard volume, content and dilution is next to impossible, its necessary to use a stable compound to express the porphyrins as a ratio of – which is where creatinine comes in. So, the paper claims that, relative to creatinine, porphyrins are high in autistic kids.
However, as Not Mercury also highlights, its fairly accepted amongst DAN! practitioners:
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.
PDF translated to HTML from ARI
And Andrew Wakefield’s colleague, Paul Shattock, also reports low creatinine in autistic kids (see source on Not Mercury blog entry). So why does that matter? Now, I’m no scientist so I was struggling to find a way to visualise this in my head and I came up with the bar chart below. The thin black line is an arbitrary ‘baseline’ (where the creatinine stops and the Porphs start) below which in purple is creatinine levels and above which is Porph levels. Now, in the autistic representation note how the decrease in creatinine has led the baseline measurement for Porph to falsely raise the amount of Porphs. In other words, relative to the baseline, there are not more Porphs as such, but less creatinine. I’m open to interpretation on this by the way – I don’t want it to be misleading.
There are also anecdotal reports of various chelators reducing creatinine further:
my son’s creatinine has come down to 11 by round 3. why is it going down?how can i bring it back to normal? i have been giving glycine to him also during rounds – every 3hrs dmsa+ala
And:
Importantly, recent data suggest that oral NAC administration > transiently lowers creatinine levels.
So here we seem to have a situation wherein autistic children are already noted to have low creatinine levels and that these levels could be even further reduced by the chelators used either in the study itself or by parents externally to the study and still the study authors claim it is significant to epxress Porphs _as a ratio_ of creatinine.
Autism One
Meanwhile, over in Chicago, Autism One has been in full force (or should that be farce?). I’m reliably informed that one of the big draws was David ‘crowd pleaser’ Kirby so I downloaded his slides to have a looksee.
Incredibly, it seems that David Kirby has magically ‘forgotten’ everything he conceded to blogger Citizen cain regarding the use of CDDS data. Lets remind ourselves of what Kirby told Citizen Cain:
…if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis. He [kirby] also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure….
And yet, here we have slides showing Kirby demonstrating the change in the rate of increase, something he has conceded is inaccurate as a measure. He also refers to the increase in cases as ‘new’ cases when its been demonstrated time and time again that these are _not new cases_ . All in all, this is simply more dishonesty from David Kirby.
Autism and autistic people deserve better than this hodge-podge of sloppiness and dishonesty.
Left Brain Right Brain 
And just as there’s IQ, there’s AQ. I’m easily in the top percentile of the population in AQ – and that’s not something I feel bad about.
Thanks, Joseph. I knew logically that 15% of the population aren’t “retarded” (unless you count “valley girls” and “jocks”) But still,
http://query.nytimes.com/gst/fullpage.html?sec=health&res=9407E0D7163BF937A25755C0A964948260
This article says 3% of residents of Missouri are retarded but 10% of the prison population is…
OK, so is it 3% of the population that score higher than I do on IQ tests? whoa. I’m smart.
Anyway, it would be easy, I think, for 1% of the nation to be autistic and appear retarded and for them to hide within the 3% of “retarded” people… just the way it’s easy for autistic people to hide on college campuses with their PhDs… I ran into one of my suspect ASD professors yesterday (big head, very nice) we had this weird non-conversation. I left wondering what he said, and he probably wondered why I asked such an odd question… good thing I was in a hurry and didn’t have time to try to figure out what had transpired….
Anyway, it would be easy, I think, for 1% of the nation to be autistic and appear retarded and for them to hide within the 3% of “retarded†people…
More info on this… There’s some conflicting data as to what proportion of the MR population is autistic. For example, de Bildt et al says that it varies from 3% to 50%. It also says that the DSM-IV-TR prevalence is 16.7%. However, as early as 1982, Shah & Wing found that 38% of the adult population in a mental handicap hospital had autistic symptoms. (Wing, of course, is probably the one person who’s most responsible for the “autism epidemic” and she likely knows this).
How much autism is recognized in this population probably has a significant effect in prevalence numbers. This is easy to see in California CDDS data across regional centers, where autism-MR is very under-recognized still even in centers with a high prevalence of autism.
“It’s not a question of what I would prefer to believe. I simply want to know the truth.â€
Right answer David.
And on the other side of the IQ spectrum, there’s also some evidence of a high prevalence of autism. See this Mensa survey.
Ms C: “Now, if we use a *standard intelligence test which has been shown to underestimate autistic intelligence by about 30 points*… but if we use it anyway… you get a bell curve of IQ’s. Correct?”
All intelligence tests given a bell-curved distribution of IQ scores.. this is how we standardise them. The highlighted portion above is something I have issue with. I’m assuming that this links to research comparing Wechsler tests to the Peabody Picture Vocabulary Test and the Raven Progressive Matrices… well… one of the most likely reasons for the underestimation problem (or at least a very significant contributor, depending on the extent to which Wechsler tests routinely underestimate the IQs of autistics) is that the RPM test is, like the Matrix Reasoning subtest in WAIS and WASI (the abbreviated Wechsler that I myself use) and indeed any test of visual reasoning using matrix-type tests, highly saturated in g. This means that the tasks themselves are quite general, and can be broken down into too many component subtasks, and are thus not very easy to use as assessments of specific things (such as short term memory, which is tapped using the Arithmetic and Digit Span subtests in the Wechsler tests). Block Design in the Wechsler suite is also similarly highly saturated in g, which may well be why autistics routinely do well on this subtest. The usual suspects (as tests which seem to lower the IQ scores of autistics) are those which tap skills that – outside of a timed situation – the autistic person might well eventually successfully use, in performing those tasks in the tests (e.g., in an untimed administration of such subtests)… things like Picture Arrangement, Object Assembly (as a ‘maybe’ here), and Mazes (in the child and adolescent tests)… and also the Coding/Digit-Symbol subtests, since they can be very hard to interpret without knowing how a score was got on them.
It is, really, not hard to see why autistics might do poorly in some of less-g-saturated subtests than on those saturated in g… temporal appreciation issues and difficulties with reading social situations (as well as imputing mental states in others) can drastically reduce scores in Picture Arrangement; a practice of checking one’s mark in detail against the legend in Digit-Symbol/Coding can be such a time-consuming methodology that it leads to lowered scores (because ot the time bonus in this and most, if not all, the subtests in the performance domain in the Wechsler suite)…
Similarly, in the verbal domain, there may be a difficulty in succeeding on the really rather culturally-bound Comprehension subtest, since this taps into what one has learned in many cases via interaction with others, difficulties with which routinely get autistics the diagnosis… this subtest is essentially about “common-sense” matters, which is consistently cropping up as an area of difficulty (since autistic common sense is not the same as non-autistic common sense). If an autistic examinee has WM/STM issues, then it may way be that his/her scores on both Arithmetic and Digit Span are depressed to a clinically significant degree…
These are the reasons why a Wechsler test is a very useful test to use in the making of autistic spectrum diagnoses… the variations in scores across subtests can prompt the educational or clinical psychologist on the right sorts of questions to ask in order to elicit more information upon which to establish a diagnosis. It is becoming accepted nowadays that overall IQ scores are probably the least useful numbers derived using intelligence tests, and that subtest score distributions may have more to say about an examinee’s future performance and his/her abilities.
I shouldn’t be speaking for Michelle here, but I think her work shows basically what you said, that the autistics were doing very well in subsections of the Wechsler, block-design is the one I remember… and that since the Raven’s is wudekkt considered to be a better overall measure of “g” and is not dependent on much in the way of culture to get at the testee’s intelligence… why not just use the RPM to test IQ when comparing “apple” and “oranges” that is autistics and NTs. I’m not sure about the Peabody Picture test, I think autistics do well on that… Tito M. did well on it according to that documentary where he met with Uta Frith or someone there in the UK.
I like the idea that the “uneven” profile that would usually show up with the Wechsler could be used specifically to dx autism.
Ms C: “… why not just use the RPM to test IQ when comparing “apple†and “oranges†that is autistics and NTs.”
In modern occupational testing, the tendency these days is to use RPM as a measure of g, since the main purpose of WAIS is to find things out for dx work… occy-psychs hardly use WAIS…. if they use a battery-type test they’d tend to use a WASI or similar (e.g., WRIT)… a little more information, and still quick enough to use.
Ms C: “I’m not sure about the Peabody Picture test…”
There are some issues regarding that one… for one, it isn’t – strictly speaking – an intelligence test… in fact, the first part of the vocabulary subtest in the K-BIT is more useful in intelligence testing than is the Peabody. PPVT is basically word-picture association.
Ms C: “I like the idea that the ‘uneven’ profile that would usually show up with the Wechsler could be used specifically to dx autism.”
Well, pattern analysis hasn’t really been shown to be totally reliable as being diagnostic in and of itself (wouldn’t want folks thinking that it’s that simple when it isn’t)…. but it does lead to interesting questions, the answer to which can shed more light on things, in order for diagnosis to be made.
I find the subtests very interesting. My PDD-NOS daughter tested in the normal range for everything (low normal for verbal) but math, which was very high. My ADD daughter had high verbal IQ, but much lower performance IQ-isn’t that opposite from what is usually seen in autism? She is gifted, but couldn’t tell her left from right hand until she was 11.
Prodigies are only found in subjects without cultural bias, like math and music. How does that relate to splinter skills as seen with ASD?
Part of the reason that one doesn’t see prodigies in writing is that for writing to seem mature the writer has to have experienced life. So like, if the child hasn’t experienced the reality of having a spouse die and being left without a home… it would be really hard for him or her to write convincingly or in a normal adult way about it. But a bright 8 year old can have prodigious (mature seeming) math talent and be naive to life. There are art prodigies, too, and chess…
Ruth: “I find the subtests very interesting. My PDD-NOS daughter tested in the normal range for everything (low normal for verbal) but math, which was very high.”
Well, if this was on the WISC-III or IV, the maths thing really doesn’t relate to maths ability *per se* as much as it does to being able to hold things in mind long enough to work on them. If it was the WJ, then it’s a different story (not really well acquainted with that one, since we don’t seem to use it much in Finland).
Ruth: “My ADD daughter had high verbal IQ, but much lower performance IQ-isn’t that opposite from what is usually seen in autism? She is gifted, but couldn’t tell her left from right hand until she was 11.”
It is quite possible to see higher verbal than performance in the cases of autistic children, and this is often seen as the means by which to identify Asperger syndrome as opposed to Kanner syndrome. The dichotomy, though, is quite false… the most reliable way would be to get a speech therapist to assess communicative ability. Incidentally, it sounds from what you say there as if that daughter may well have some dyslexia issues going on.
Ruth: “Prodigies are only found in subjects without cultural bias, like math and music. How does that relate to splinter skills as seen with ASD?”
It’s actually possible that the term “splinter skills” relates to cultural bias more than to anything specifically psycho-educational… I’m interested in MsC’s post on this topic… that seemed to be a developmental approach to understanding what makes someone a ‘prodigy’, and even as a short post it looks rather convincing… if I had time (and a paid post to do it in), I’d love to research that.