On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’
Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.
The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.
The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.
The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.
2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.
2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.
2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.
The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.
And these are the people who claim to be the autism community?
The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.
These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.
Left Brain Right Brain 
What those papers say is that DSM-IV Asperger’s Syndrome is probably not diagnosable due to a technicality. Basically, if you strictly apply DSM-IV then all or nearly all children (I’m not sure about adults) who get an Asperger diagnosis should be getting an Autistic Disorder diagnosis instead.
They don’t say that children and adults with an Asperger diagnosis are not really autistic. Quite the contrary.
In fact, there’s apparently no value to the Asperger/Autism distinction. IQ seems to be predictive of outcome. But Asperger/Autism, speech delay and severity of symptoms have not consistently been shown to be predictive of outcome *independently* of IQ.
Given this, instead of having an Asperger vs. Autism categorization, it’s probably more practical to simply diagnose Autism, and then also diagnose IQ. Of course, the latter is complicated and would require further discussion to elaborate.
Sorry to burst your bubble, but there are a lot of people who have no clue whatsoever about Autism. It doesn’t require proclamations to perpetuate misconceptions.
J,Similarly the ICD-10 states that AS is of uncertain nosological value for the same reasons.
RAJ,
J Pediatr. 2006 Aug;149(2):280-1. The mitochondrial DNA A3243A>G mutation must be an infrequent cause of Asperger syndrome. Kent L, Lambert C, Pyle A, Elliott H, Wheelwright S, Baron-Cohen S, Chinnery PF.
[][]
RAJ, Does this answer your question?
1: J Pediatr. 2006 Aug;149(2):280-1.
The mitochondrial DNA A3243A>G mutation must be an infrequent cause of Asperger syndrome.
Kent L, Lambert C, Pyle A, Elliott H, Wheelwright S, Baron-Cohen S, Chinnery PF.
Also RAJ, I don’t know if you realize that the AQ test is simply a screening tool. It’s not considered a diagnostic instrument. It probably gives false positives in close to half of cases at certain cut-offs. But it has good screening properties at a cut-off of about 26 (Woodbury-Smith et al., 2005; Kurita et al., 2005).
In the studies of adults by Baron-Cohen et al. they don’t diagnose based on the AQ test alone, obviously. They just use it to select a group of potential candidates, and then they do one on one interviews.
If you know of an autism screening instrument or a diagnostic instrument that is not “like a personality test” (let’s see them for adults, but even children) what are they? What do you propose such an instrument be like?
RAJ, you’re – how should I put it – trivializing the AQ test. The proper way to critique screening instruments is not by making broad dismissive statements, but by showing they don’t work in practice.
“In fact, there’s apparently no value to the Asperger/Autism distinction. IQ seems to be predictive of outcome. But Asperger/Autism, speech delay and severity of symptoms have not consistently been shown to be predictive of outcome independently of IQ”.
A diagnosis of PDD/NOS along with IQ has been most associated with recovery. Up to 25% of children diagnosed with an ASD do recover:
http://www.ncbi.nlm.nih.gov/pubmed/19009353?
PDD/NOS is the largest group, a group that didn’t exist until 1987 (DSM-III-R). Their was a long debate in the 1980’s through the 1990’s regarding diagnostic issues in autism. The debate was concerned with the largest group of children who were not ‘autistic’ but shared many secondary isolated symptoms with ‘autistic’ children and defied categorization and who were not receiving special education and intervention services. They were grouped under the umbrella of Pervasive Developmental Disorders. DSM-IV-TR has renamed the PDD’s as Autism Spectrum Disorders, an unfortunate and misleading label. Johhny Madsen, an associate member o the editorial board of the Journal of Autism and Developmental Disorders has correctly defined PDD/NOS. He wrote ‘PDD/NOS is defined by what it is not -autism’.
My daughter, diagnosed with PDD/NOS in 1988 lost her diagnosis and has had a normal outcome. The neurodiversity crowd will obviously argue that she was not autistic in the first place, since autism is not curable. Well, that is probably correct. Autism is not curable, an PDD/NOS is not autism.
So, you have your answer to your first question…
Oh, Um, no, Asperger’s isn’t Autism so B-C et. al doesn’t count…
There’s no cure for autism, and some autistic children do lose the diagnoses. There’s no inconsistency between these two statements. Is it “recovery” or simply that some people develop differently?
For example, normal children go from being non-verbal to being verbal all the time. How this happens is not well understood, but most people don’t think of it as a great medical mystery of the human condition.
In Soto’s Syndrome, it’s pretty much expected that children will catch up a bit later (but not always). That’s just the nature of the condition.
There’s more stability at a later age, though. In very young children it’s less predictable whether the diagnosis will hold. Everyone agrees that a child can be too young to be diagnosed. But once you look at older children, then it’s quite stable.
Some autistics have what is called a “good outcome” even if they are obviously autistic at a not so young age (e.g. see Kanner, 1972). I believe this is different to a loss of label in childhood, though. Besides, nothing is known about the adult outcome of children who lose their autism label, since early diagnoses are pretty recent.
RAJ, The clue’s in the ‘developmental’ bit of the label.
Clue ii) “Developmental DELAYS”
My comment finally made it out of moderation. I’m quite interested in hearing Mr. Doherty explain how all these folks are trivializing autism….
gypsy
You are taking a lot of statements and labels from various sources out of context and context does matter. I agree with you that bringing Dennis Debbaudt to PEI (or NB where he has also visited) is of benefit for people with autism. That is NOT trivializing autism. What is trivializing autism are statements like running for autism NOT for a cure.
The other sources you mentioned ARE seeking, cures, treatments, interventions and other services to help people with pervasive developmental disorders overcome the deficits associated with their individual PDD diagnoses. That is not the same as running FOR autism as you and Alex use it, or at least as you report that Alex uses it.
Glorifying autism or PDD’s neurological disorders, is trivializing it for those for whom it means of life of dependency and in some cases isolation. That is what you do jypsy.
“out of context”…Pot…kettle….
“What is trivializing autism are statements like running for autism NOT for a cure.”
Not my statement, or Alex’s. Or in context. It *is* trivializing Alex again.
Dennis is an “other service”. All the resources we have put, and still are putting in the hands of law enforcement, first responders, autistics, educators, etc etc are “other services” and Alex ran FOR those services. “That is not the same as running FOR autism as you and Alex use it, or at least as you report that Alex uses it.” Again, you are trivializing my son, who he is, what he does, and why he does it. Shame on you!
“Glorifying autism….” This gets more disgusting by the moment.
Why? You could argue it trivializes a cure for autism, because it suggests that a cure is not the most important thing (although it’s a stretch to call that trivialization – it’s really just a philosophical position). But it doesn’t trivialize autism per se. In fact, the whole intention of the run for autism is to make autism an important cause that everyone should be aware of. That’s the opposite of trivialization.
“There’s no cure for autism, and some autistic children do lose the diagnoses”.
Autism increasingly appears to be an abnormal immunogenic response to known or unknown immunogens in genetically predisposed individuals resulting in structural/functional abnormalities in neuronal dendrites. The inflammation may progress, arrest, improve spontaneously, or improve with certain current treatments. Undoubtedly, there are reports that some children appear to have been cured with certain treatments e.g. diet, supplements, steroids, immunoglobulins, behavioural treatments. These cures may have coincided with spontaneous improvement. Most current research is directed towards the consequences of the abnormal immuno-genetic response and structural/functional changes in the neuronal dendrites e.g. immuno-modulation/gene therapy/dendrite scaffold proteins .
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You’re right. But an AS diagnosis isn’t about “isolated” symptoms–it’s about a group of signs that occur together. (That’s what a syndrome is). A lot of people can have one or two individual signs of AS, but only people with AS have many signs in a unique pattern.
Of course, that assumes AS and all the other PDDs are all that different from each other. One of the recommendations of the DSM-V autism work group is to remove Asperger’s Disorder and PDD-NOS altogether and just have “autistic spectrum disorder,” with modifiers.
Yes. Saying that autism isn’t just about defects but also about the entire lived experience concerning the interactional and socio-cultural factors related to those traits, is the exact opposite to trivialisation.
Schwartz said
“…there are a lot of people who have no clue whatsoever about Autism. It doesn’t require proclamations to perpetuate misconceptions.”
True this, but the solution to this is to work to help people ‘get a clue’. The ‘anti-ND’ solution appears to be to blame the ‘ND crowd’ for the ignorance of the genreal public. Either that or proclaim thier own publicity as the only ‘true’ image of autism.
Neither solution is fair, or a proper use of resources.
Dedj,
I agree.
“RAJ, you’re – how should I put it – trivializing the AQ test. The proper way to critique screening instruments is not by making broad dismissive statements, but by showing they don’t work in practice”
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2516538
Here is a Dutch group that uses the Dutch version of the AQ test to segregate those with an ASD from other groups not as a screening instrument but as a diagnostic tool.
It is the Baron-Cohens of behavioral genetics that trivializes a profoundly handicapping condition by the false claim that there is a continuum of autistic traits from profoundly handicap to normal. I don’t see it as a continuum at all, there is a definitive cutoff point that seperates autism per se from ‘autistic traits’ that may be shared by the extended familiy members. The cutoff is the disruption in early brain development and the array of secondary isolated and neurologically based symptoms associated with
‘Autism’ that are also found in all neurologically impaired populations regardless of diagnosis. These neurological symptoms are not found in the first degree relatives, nor is the obvious structural abnormalities consistently found in autopsy studies over many decades shared by first degree relatives who are not ‘autistic’.
RAJ, Does this answer your question?
1: J Pediatr. 2006 Aug;149(2):280-1.
The mitochondrial DNA A3243A>G mutation must be an infrequent cause of Asperger syndrome.
Kent L, Lambert C, Pyle A, Elliott H, Wheelwright S, Baron-Cohen S, Chinnery PF.
——————————————
No, Here is the complete text of Baron-Cohen’s hypothesis that this mutation ‘must’ be an infrequent cause of Asperger Syndrome.
Click to access 2006_Chinnery_etal.pdf
If you read the entire text, none of the patients diagnosed with Asperger Syndrome had this mutation. They then examined the mothers tissue and did find evidence of the mutation in some cases. The mutation itself, as the authors concede, is not specific to AS and is commonly found in a variety of medical and neurological conditions.
Of further interest is that the authors claim that AS (even ASD’s entirely) involve the interaction of up to 15 different genetic mutations of small effect that interact together producing some hypothetical boiling cauldren that tips the disruption of early brain development into structural abnormalities tat ’cause’ autism.
Now i the authors could only identify the missin 14 other genetic mutation that interact with this specific mutation found in mothers but not in AS patients they could build a more rational hypothetical case.
OOps. I misinterpreted some of the actual text in Socrate’s citation.
I said that this mutation was not found in any of the AS patients, but was found in some of the mothers. Actually the study reported that the mutation was not found in either the AS patients or in the mothers of those AS patients:
Click to access 2006_Chinnery_etal.pdf
“None of the AS cases had the 3243AG mutation”.
“We therefore screened
maternal buccal swab mtDNA from the mothers of 138 patients
with AS”
The title of this study is completly misleading since they found no evidence of the mutation in either AS patients or their mothers, but never the less entirely speculated that the mutation must account for some cases.
Very strange indeed.
There is? Is it measurable? It doesn’t vary depending on the opinions, interpretations and personal biases of a clinician? It doesn’t vary depending on the latest notions of autism? If that’s true, this has to be the most remarkable discovery in the history of autism science to date.
So there’s no one who is just barely autistic? And there’s no one who is nearly autistic but not quite?
I’ve come to the conclusion that RAJ is from the Thomas Sowell school of thought or thereabouts. Thomas Sowell is a conservative economist who has a son who might have been or could have been labeled autistic as a child. These days Thomas Sowell denies up and and down that his son is autistic or was ever autistic. He completely opposes the concept of an autism spectrum, probably for personal reasons. His views on the matter are expressed here.
RAJ
You.ve got a line in a post about consistent structural abnormalities found at autopsy in autistic folks. Hang on a sec. Are you sure about that? Not my area but it’s awfully common to read that the single biggest headache in autism research is the utter inconsistency of findings including anatomical ones. Is there even one that’s universal?
Joseph
Thanks for the Thomas Sowell. I come up well within the ASD range on an AQ test, which I think is just lovely for describing people in general so I don’t place any significance on it whatsoever. It’s a pretty typical attempt by a social butterfly (several social butterflies actually)to describe people phenomena that are utterly foreign and probably a bit frightening for them.
The only thing that matters about the AQ test is whether it’s useful for screening autism. It’s a numbers game, really.
Suppose you want to determine the prevalence of autism among 1000 adults. You could have an expert clinician do 1000 interviews, right? How much would that cost? Is it feasible?
Instead of that, you could have the 1000 take the AQ test. Then you only interview those who score 32+ (or maybe 26+ if you don’t want to miss anyone, but then you’ll have a lot more people to interview). Those who score 32+ are perhaps 2% or 3% of the whole. So you only have to do 20 to 30 interviews, at 2% to 3% of the cost of the naive technique. (You might find about 10 autistics of so after this).
You missed a bit RAJ:
“We conclude that the 3243AG mtDNA mutation is a rare cause of isolated AS (exact 95% confidence interval 0%-2% for probands, and 0%-2% for mothers of probands)”
Hi Alyric –
You.ve got a line in a post about consistent structural abnormalities found at autopsy in autistic folks. Hang on a sec. Are you sure about that? Not my area but it’s awfully common to read that the single biggest headache in autism research is the utter inconsistency of findings including anatomical ones.
Well, I think part of the big problem is that finding autistic brains to evaluate is sort of cumbersome. Until very recently, I’d read that reductions in the purkinje cells were very frequent (I don’t think anyone would have said universal) in autism; with several studies reporting disturbances. There is an recent paper that looked using a different technique and found that only about 1/2 of the brains evaluated showed differences. [Cerebellar Purkinje Cells are Reduced in a Subpopulation of Autistic Brains: A Stereological Experiment Using Calbindin-D28k.]
Of course, their study had only 6 brains, and many of the other studies had similar sample sizes.
If there are other structural differences that have been found more frequently than purkinje cell loss, I’d also be interested in hearing about it.
As far as AQ being meaningful, we have ways to see if it can really apply to autism or not by removing the fuzzy. Here is a good experiment that will never happen. Give 10000 people an AQ test. Track the high ‘scorers’. When they die, check for purkinje cell loss. Or microglial activation. Or reductions in nicotinic receptors. Or increased glutamate levels. Or bunches of other abnormalities found in higher proportions in autism. Compare with people who scored in the ‘normal’ range of the AQ.
– pD
I think it would be an interesting experiment. If it’s never done, it would be because it’s too difficult, or no one in a position to do it is interested in doing it. But no doubt you’d find some brain differences; although who knows if they’d find the specific brain differences you stipulate.
It reminds me a bit of Casanova’s work on minicolumns. He found that a characteristic of minicolumns clusters in a certain way in autistics. But he also found those characteristics in 3 scientists he said were not autistic.
Whenever you compare two behavior phenotypes, you’re bound to find group differences in neurology if you look hard enough. Compare men and women, you find differences. Compare left-handed and right-handed, you find differences. Compare alien abductees with the general population, you find differences. Gifted vs. non-gifted: differences. People with a personality trait vs. those without: differences.
Basically, humans are characterized by having a diversity of brains, a “neurodiversity” if you will. But it seems to me that people prefer to think in terms of “normal” brains that are all equivalent to one another, and “defective” brains. This fabricated (in some ways politically correct) simplification does not exist in reality.
“You.ve got a line in a post about consistent structural abnormalities found at autopsy in autistic folks. Hang on a sec. Are you sure about that? Not my area but it’s awfully common to read that the single biggest headache in autism research is the utter inconsistency of findings including anatomical ones. Is there even one that’s universal”?
The consistent findings in many dozens of cases subjected to post mortem microscopic examination are varied with the most consistent finding being a massive loss of cerbellar Purkinje cells, an arrrest in the development of limbic system regions (hippocampus an amygdala) where there are too many cells and they are too small.
http://www.ncbi.nlm.nih.gov/pubmed/15749244?
Ritvo also found Purkinje cell loss in six subjects. Rutter’s group also reported the same finding and additional structural abnormalities in the cortex.
http://ajp.psychiatryonline.org/cgi/content/abstract/143/7/862
http://brain.oxfordjournals.org/cgi/content/abstract/121/5/889?
Specificty is a problem as many of the findings are not unique to autism and the disruption in early brain development appears to cascade down to many regions. Nevertheless, the finding is absolutly consistent in that structural abnormalities are present and reported by many independant groups of hilghly respected reserchers.. Ritvo, Rutter, Bauman and Kemper to name a few.
“I’ve come to the conclusion that RAJ is from the Thomas Sowell school of thought or thereabouts. Thomas Sowell is a conservative economist who has a son who might have been or could have been labeled autistic as a child. These days Thomas Sowell denies up and and down that his son is autistic or was ever autistic. He completely opposes the concept of an autism spectrum, probably for personal reasons. His views on the matter are expressed here”.
Frankly, you have gone beyond the pale in questioning the motives and reasons why others may disagree with you. Make a reasonable case and drop the sophomoric insults, always a mark of one who has lost the debate.
And you don’t do that when you say that the neurodiversity community is out to trivialize autism? How about when you say that professionals are just misdiagnosing autism left and right willi nilly? Spare me the drama, RAJ.
RAJ,
Since you quote Rutter as an authority; he stated recently that the number of autistic brain post-mortem examinations, to date has been woefully inadequate.
You’l have to wait until I’ve ported my documents for the reference.
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Dendrite spine and immunological abnormalities are also highly prevalent.