Thinking about various National Autism conferences - how about having an autism conference where autistic people researching autism speak? This could be online or offline.

More on the dyslexia controversy in the current issue of the Times Education Supplement.

There was a report about a conference in London on dyslexia which was convened following the controversial television documentary on the subject.

Julian Elliot - professor of education at Durham University, who had argued in the documentary that the term dyslexia had outlived its usefulness - said that it was not clear to him how to distinguish between dyslexics and non-dyslexics, or what difference it makes to the required treatment if a person is labelled dyslexic or not.

Professor Maggie Snowling of York University contended that dyslexia can be defined as a "neurodevelopmental disorder with a genetic basis".

She said that the rate of dyslexia varies according to the language people learn. There were few dyslexics in Italy or the Czech Republic because their languages were more logical than English.

She presented research which suggested that the most effective treatment for young children who struggled with reading was the same, whether or not they were termed dyslexic. But the term dyslexia is still needed as long as such conditions exist.

That would mean any stimming Autistic. I didn't know that my hearing became more acute if I tried the finger-flicking one until someone on this board mentioned it an I tried it. That's research!

Hi Michelle,

Okay, you are not going to believe this, but we don’t have a copy of Evolution’s Eye so, I am waiting for it to come from the interlibrary loan system. I only ordered it (hangs head in shame) on Thursday so it should be here Monday.

I plead the excuse of being on the AWARES conference (still) and in the midst of battle so to speak. Actually right in the middle of it. I have met some thoughtful people who hold an opposite view from me however.

As for RDI + ABA, well...it could be worse, but it still isn't good.

You wrote “Re free will, I checked carefully, and I don't think I proposed that free will could be surgically removed then re-implanted”

You do propose that free will can be not exercised.
 
You wrote “Free will (my version) requires effort.”

May we assume then that a child who flops on the floor and will not get up is not excising free will? This takes no real effort.

I disagree with your free will/informed consent equation. There are other possibilities, such as “The person has free will that is constant and automatic, but lacks the experience to perceive certain patterns and therefore misses clues about what is happening in their environment.”

I don’t think behavior analysts engage in a meaningless charade by seeking informed consent. Seeking informed consent allows the persons to make a selection. I think this should be respected solely for reasons of ethics.

You wrote “What kind of information do you think is required such that there is genuine informed consent for an ABA/IBI treatment for autism? I haven't <hangs head in shame> tried to find out what an ABA/IBI informed consent form (the one parents would sign) looks like”.

Informed consent in ABA/IBI must meet a standard set by the government. This includes
description of procedures (must be free from jargon), practices, a statement of how data will be kept private, what measures will be used, criteria for success, and dates that will be scheduled for evaluation of progress. The statement must also make it clear that the participant can withdrawal and that any sort of retribution will not occur. I think that should be all (off the top of my head).

You probably picked the wrong time to mention that reinforcement is different from learning. I just spent a great deal of time helping someone design a research logic that will account for learning via reinforcement. In single case design we would prefer to use some version of a reversal design (going back to baseline) this is going to fail pretty bad in most things that show learning because baseline won’t drop back down like its supposed to. This design works great when we are dealing with manipulating environmental things to make things less aversive (it will probably go down/up/down just like it is supposed to). This design will not prove causation for things like comparing methods to teach the alphabet.

I guess there is this stubborn issue that the behavior can still keep going in the absence of the reinforcement. Train and pray was a criticism that was mentioned by Dr. Baer a
few years ago now. It isn’t a contemporary criticism. This was in a time when we had less technology to fade out reinforcement. We have done some definite work since that time.

Incidentally “texas sharpshooter” is a truly wonderful phrase which will have to make an appearance in my blog quite soon.

I do not disagree with you re the clusters, but I am more hesitant than you to invoke the idea that there can not be clusters. The idea of a perfectly even distribution across all settings seems unlikely to me.

I understand that your term “epidemic of irresponsibility” was used in a broader sense than what I used it for. The term just seemed to fit so very precisely in what I was working on. I am happy to defend my work re the “medical communities” response by the way.

Speaking of appearing in my blog, have you encountered Dr. Yazbak in the literature much? I haven’t had the pleasure until recently. I have observed no example to date where he does not invoke “conflict of interest” in his writings. His use of strawman arguments is getting rather tiresome. I am working on him at the moment.

Edited by author 10-30-2005 12:33 AM
Re /m2743, my question about methylation is why mercury-related problems with DNA methylation (as proposed by Dr Deth etc) would only result in autism, and not in conditions known to be associated with DNA methylation problems. Last I looked, there was no "epidemic" of FRX (to the contrary, early high prevalence estimates of 1 in 2000 are now lowered to circa 1 in 4000 in males), but Dr Deth states that DNA methylation has a "crucial role" in FRX.

Maybe more to the point, Dr Deth states the same thing about Rett syndrome--that DNA methylation plays a crucial role (see http://www.autismwebsite.com/ari/dan/deth.htm ). And here he is again, in testimony to Congress, "Indeed, abnormal DNA methylation has previously been implicated as an important causative factor in Rett and Fragile-X syndromes (3,4)."

Last I looked, there was no "epidemic" of Rett syndrome, which continues to be rare (1-2/10,000). Rett's requires "normal" development followed by "regression" in order to be diagnosed, unlike autism. I'm sure the criteria for Rett's could be expediently mangled, just like the criteria for autism have been, in order to argue that Rett's is really mercury poisoning. So why haven't they been? Rett's is a PDD after all. And why hasn't there been an explosion of Rett's cases? Is someone claiming that chelation and/or B-12 cures Rett syndrome? And if they aren't, why not?

Also, here's a short "case study":

"John's early history was within normal limits. By age 2 he was speaking in sentences, and his development appeared to be proceeding appropriately. At age 30 months he was noted to abruptly exhibit a period of marked behavioral regression shortly after the birth of a sibling. He lost previously acquired skills in communication and was no longer toilet trained. He became uninterested in social interaction, and various unusual self-stimulatory behaviors became evident. Comprehensive medical examination failed to reveal any conditions that might account for this development regression. Behaviorally he exhibited features of autism. At follow-up at age 12 he still was not speaking, apart from an occasional single word, and had been placed in a school for the severely disabled."

This looks a lot like the kind of narratives mercury/autism and/or generic anti-vaccination parents use to "prove" that they started with a normal child who then vanished into the abyss of autism when the toxic tipping point (or something similar) was reached. Kids like the one described above are the kids whose numbers exploded in the tsunami of autism, right?

Well, no. I took that case study from this Yale page, http://info.med.yale.edu/chldstdy/autism/cdd.html . This isn't autism. It's Childhood Disintegrative Disorder, which was first described in the science in 1908. CDD continues to be extremely rare (0.2/10,000; Fombonne, 2002). No one has declared a CDD epidemic. And, as with Rett syndrome, "normal" development followed by "regression" is a CDD diagnostic criteria.

Why are the mercury/autism crew ignoring the two PDDs in which regression is mandatory, and the one (overlapping) PDD where there is excellent evidence that DNA methylation is a problem?

Also, re /m2743 , I forgot to add that my invited presentation is an informal talk to people who work at Giant Steps. The problem is I have to give it twice--once in English, and once in French (the distinct society strikes again).

Hi Michelle,

I am frankly envious that you could accurately make the criticism in /m2751 in such compact form. I am working on something similar right now and it is taking me a lot more space to accomplisg the same thing.

(shuffles off mumbing)....

I've seen about 5 or 6 pages of posts here and i can't believe the state of thing about autism and AS in canada, we seem to be stuck with a bunch of n*tballs...

how's the state of this in QC ?? i've noticed a few groups for parent support with highly dubious opinions and a serious lack of doctors like all of you at the "TEDSDI" clinic (you deserve a lot of praise !!)

If i can help with something (for example, i've been reading a good number of law & ruling lately), let me know, i'll be comming back regularly.

Alain

Edited by author 10-30-2005 10:45 AM
Hi Michelle,

Last night I listened and danced to "The Maple Leaf Revolution" on BBC radio. It was the first part of a two-parter about Canadian popular music over the past fifty years or so. There were songs by Gordon Lightfoot, Bruce Cockburn, Joni Mitchell, Kathleen Edwards, the Junkie Cowboys, and others. Leonard Cohen, Gordon Lightfoot, Bruce Cockburn, Kathleen Edwards and other people were also interviewed. Leonard Cohen said that when he was 16 or 17 years old he played guitar in a band called 'The Buckskin Boys'.

Partly because Canadian popular music performers are funded by FACTOR - a government organisation - there is a lively and vibrant music scene in Canada.

In the early 1960s the coffee houses and beat clubs in the Yorkville district of Toronto were a centre for folk/rock music.

Cate Friesen is a Canadian singer/songwriter whose music I like very much. She wasn't mentioned on the BBC programme though. There's information about her here - http://www.festival.bc.ca/index.php?target=/top30/friesen.html. A Canadian friend gave me a cassette of Cate Friesen's album 'Wayward' when we met at a Quaker College in England eight years ago.

British Summer Time ended at 2am this morning and the clocks went back one hour. I read on the CBC website that Daylight Saving Time did not end this morning in all of Canada. Also from looking at a time zone map of Canada, I discovered that the time zones do not correspond to provincial or territorial boundaries, while Newfoundland Time is half an hour, not an hour ahead, of Atlantic Time.

When planes, trains etc cross from one time zone to another is an announcement made so that passengers know to adjust their watches? I suppose travellers by private transport would sometimes not know that they hsve crossed into a different timezone until they see a clock in the next settlement.

A feature on CBC would be a good way of marking the first anniversary of the Supreme Court Auton decision.

Edited by author 10-30-2005 08:32 PM
Hi Alain, "highly dubious opinions" is a description I can't really improve on. And Dr Mottron's group is an oasis. I haven't found any others in Quebec. Eric Fombonne (at McGill) is an superb epidemiologist, and I have a lot of respect for his work in some areas. But McGill's approach to autism is conventional: ABA (which they recommend as "the gold standard" but don't provide), additional therapies, medication, how-to-be-normal social skills groups, etc.

Re helping, it's always better when more people speak out, so that the "highly dubious opinions" don't go unchallenged, and so it becomes apparent that there is more to autism than devastated parents demanding that governments fix their terribly sick/defective children.

When it comes to legal stuff, I would sure like to find someone who has been through a Canadian Human Rights Tribunal hearing as a Complainant.

I haven't found any others in Quebec /m2756

neither do i, though i've been informed (and refered) there is a doctor Fallu (don't know his full name) who's doing some study on ADD and ADHD who might also have a clue but i haven't got a call from his secretary yet (i've been waiting since july).

it's always better when more people speak out, so that the "highly dubious opinions" don't go unchallenged, and so it becomes apparent that there is more to autism than devastated parents demanding that governments fix their terribly sick/defective children.

I try to, for now, the only place i've been doing doing it effectively is at my faculty (Management faculty of Sherbrooke's university) but there's been a few other places as well, i'm also "sueing" Quebec's ministry of education (technically,it's not sueing but...), maybe i'll have the occasion of doing some advocacy there too.

As for the Human Right Tribunal, i'm not the best person for that, so far, the only thing i did is reverse engineer the bureaucratical system in Quebec's govt. as well help writing a few subsidies request for some projects at the university.

Alain

Edited by author 10-30-2005 09:24 PM
Hi John,

You left out the DAN!. The convergence is ABA/DAN/RDI. Only under the auspices of the DAN-based anti-vaccination National Autism Association can you find Drs Gutstein and Lovaas happily cheek by jowl (so to speak).

So your position re free will is, either it is automatic, constant, and effortless (everything a person does involves free will, unless coercion can be established), or it doesn't exist at all.

I was trying to figure out what kind of a cognitive process free will would be, if you are correct, and in the condition of free will existing. One implication of your position is that free will would be different in autistics and non-autistics. This is because your model will only work if free will is a high-order mandatory cognitive process, and these kinds of processes and their top-down fall-out are an area in which autistics are atypical (Mottron, Dawson, Soulieres, Hubert & Burack, in press, phew...).

But I disagree with your all/always-or-nothing view (leaving aside coercion for now). Your model does make informed consent either meaningless (in the "no free will" condition--the person signing has no choice), or makes the "informed" part unnecessary (in the "all/always" condition--free will is automatic and effortless, making information in the context of consent meaningless).

Thanks for the information about informed consent for ABA/IBI. I have a bunch more questions. You wrote "Informed consent in ABA/IBI must meet a standard set by the government". This standard is set in which area, for ABA/IBI? Education? Does going to school generally require informed consent these days? Or is this a standard for psychological therapy? Does ABA/IBI have its own standards, and how is ABA/IBI described in these standards (as what kind of procedure/treatment/therapy/whatever?). Finally, some (most?) informed consent procedures have to include informing the person of risks, side-effects, etc. Is this required with ABA/IBI?

Learning is a cognitive process. Reinforcement isn't. Learning happens in spite of or contrary to reinforcement (Epstein et al, 1985; Lovaas & Newsom 1987). A theory that that "reinforcement is learning" is what we call way too powerful. If it were true, the consequences would be extraordinary. And so far as I can tell, you are again saying that you can predict things, no problem.

About clusters. Epidemiology is a blunt instrument. Small differences or trends will not be detected. However, prevalence studies could conceivably show "clusters", because people might move to areas where they believe there are better autism services. So you could predict that prevalence studies done in a very fine-grained way might reveal areas where there are more autistics than others. But incidence studies should not be biased this way.

Dr Yazbak (there is another collaborating Yazbak also--sort of the "Geier" effect) publishes in "Medical Hypotheses" and in the letters section of the BMJ, as well as on the Red Flags website. So I haven't read much of his work. He's a mercury-and-MMR guy. Isn't he the one who is sure the Danish autism "epidemic" was caused by the MMR? But he can't explain (nor can anyone else proposing MMR or mercury-and-MMR hypotheses) why the US didn't have an autism "epidemic" when they introduced the MMR in 1977. Yes, they didn't add an MMR booster until years later, but the booster is given after the age where autism must be apparent in order to be diagnosed. In 1977, so far as I can tell, the US had the same amount of thimerosal in the childhood vaccination schedule as the UK did in 1988 when the MMR was introduced there (and supposedly caused the UK "epidemic"). Go figure...

Edited by author 10-31-2005 02:03 AM
Hi Philip,

I first learned about the BBC's invasion of Canada (or I suppose it's the other way around) in "Canada rocks the Beeb", a Toronto Star story here http://www.thestar.com/NASApp/cs/ContentSe...hAX&tacodalogin=yes

"BBC listeners turning to the network's Radio 2 station tomorrow evening might be forgiven for wondering if they've mistakenly tuned into the CBC."

See how polite and reliable Canadian musicians are:

"What was really amazing was that not one artist was late, not one artist postponed, not one artist cancelled. It blew my mind."

And you've found another Canadian peculiarity. Okay, Newfoundland being half an hour off the times the rest of the world lives by is pretty interesting. But then there's Saskatchewan and Daylight Saving Time and our constitution (time is a provincial thing). Here's the wiki version http://en.wikipedia.org/wiki/Daylight_saving_time , which looks accurate to me:

"In Canada, time is under provincial, not federal, jurisdiction. The province of Saskatchewan is the only part of that country (other than northeastern British Columbia and Southampton Island) that does not use DST, that is, it does not change times in spring and fall. Saskatchewan is bisected by the 105th meridian, the central meridian of the Mountain Standard Time Zone (GMT -7), yet clocks are kept at GMT minus six hours all year long. (This policy was implemented when the Saskatchewan Time Act was passed in 1966, to solve the problems that arose when time zones varied from town to town.) Thus, in the summer months Saskatchewan is in sync with Mountain Daylight Time and in the winter months it is in sync with Central Standard Time. Observationally, this is equivalent to the province being on Mountain Daylight Time year-round, though officially the province is considered to be part of the Central time zone. The charter of the city of Lloydminster, which is bisected by the Saskatchewan–Alberta border, gives it a special exception (among areas in Saskatchewan) of using DST. Lloydminster and its immediately surrounding region in Saskatchewan use the same timekeeping routine used by Alberta, DST with Mountain Standard Time."

A Canadian, Sir Sanford Fleming, invented time zones.

It's true that one intrepid CBC reporter contacted my lawyer re Auton circa the decison last year, resulting eventually in me appearing fleetingly in a non-relevant-to-Auton context on CBC television. But CBC's coverage of Auton, before and after the SCC decision, was otherwises pathetic, rife with the usual errors, biases, pity- and scare-mongering ("my son is lost"), etc. In Canada, media coverage is almost always bad for autistics (the major exceptions to this have been in French, on Radio-Canada).

Edited by author 10-31-2005 01:52 PM
Hi Michelle,

Thanks for your link to the Toronto Star story about the BBC's broadcasting of Canadian music. I didn't realise it would be news in Canada.

Thanks also for the information about Daylight Saving Time in Canada, and the perculiarities of the situation in Alberta, and in Lloydminster.

I have heard about research which showed that if DST was in force all the year round in the UK, there would be fewer traffic accidents when motorists are rushing home from work in the dark during the evening rush hour. But it would still be dark from about 5pm to 6 pm for most of November, December and January. Anyway I would not like it to be dark in the morning to past 9 o'clock.

I have visited the website of Giant Steps school in Montreal - http://www.giantstepsmontreal.com. According to the site's home page autism is mysterious and enigmatic. They believe that "The education of the child with autism is a matter of reclaiming the rights of childhood for each student". Do they mean that autistic children do not have a childhood?

In "Our Values" they state that "we are convinced that each child, no matter what their diagnosis might be, holds the capacity to learn, grow and blossom." Do they mean as autistic children? And "Our ultimate goal is to achieve the maximum potential of each child, despite restrictions and limitations caused by autism." In other words autism is stopping each child achieve his/her maximum potential; no mention of harnessing the unique skills and abilities of autism to achieve each child's fullest potential.

They do not specify that they use ABA, but that "the school employs programs and methods which are supported and validated by both the scientific research community and practical application. However on the history page they recount that in March 1985 the Giant Steps team flew to Los Angeles and met "with the UCLA neuro-pyschiatric team, Dr.E. Ritvo, Dr. P. Tanquoy, Dr. E. Ornitz, and Dr. I. Lovaas for a fact-finding seminar on the latest genetic research, neurobiology of autism, applied behavioural research, and intervention methods used at the UCLA Autism Clinic.

However I don't want to judge the school solely from its website. It's good that the staff have invited you to give them an informal presentation.

Scientists discover that mice sing.

"They found that the songs included several syllable types (collections of notes) which were arranged into phrases and motifs, fulfilling the definition of song. Noises made by insects such as crickets, and calls by frogs, are far simpler."

The above is an excerpt from a recent New Scientist article http://www.newscientist.com/article.ns?id=dn8237 , which comes complete with a cute picture of male mouse serenading female mouse.

As remarkable the singing mouse genuinely is, what is truly astounding is the (you guessed it) requisite, inevitable, ubiquitous, de rigueur autism angle.

"Singing in birds is used as a model system to investigate human speech and learning. But far more is known about mouse genetics. Holy hopes that studying the singing mouse will help uncover fundamental principles about the brain, and may eventually help understand disorders of communication, such as autism."

Will singing mice crack the mysteries of autism? Stay tuned...

Hi Philip,

I don't know much about Giant Steps myself. I dislike their website for the same reasons you do. They have undergone many changes in recent years--I'm pretty sure about that. For a while, the person in charge was Norman Giroux, who is an all-and-only ABA guy and runs the ABA program at UQAM. He didn't last very long though.

I wonder if there's any autism "treatment" or program anywhere in the universe which doesn't claim to be based on the best available scientific evidence and promise to extract the "maximum potential" of autistic children.