Very cool, re Alex in the G & M.

And here's some pumpkins http://www.guardian.co.uk/environment/gall...e?picture=354902301

I second Michelle's message about it being very cool that Alex is in the G & M.

I don't think this http://www.theglobeandmail.com/news/nation...ase/article1346532/ is atypical of how funding for very expensive treatments for serious (that is, fatal) diseases are handled in many Canadian provinces.

The story involves a treatment for which the evidence seems to be (I'd be happy to be corrected--I've only glanced at the two papers linked to in the story, and this is hardly my area) of much better quality than the evidence for ABA-based autism interventions, which in Ontario can cost ~$100,000 per year.

In any case, this story again shows the dishonesty of autism advocacy claimes that all "medically necessary" treatments are covered in Canada. If there are 10,000 people in Canada with pulmonary arterial hypertension, a serious fatal disease, then that is in the vicinity of the total number of autistic preschool children (using a prevalence of 1 in 150).

By the way, I sure want and need to get vaccinated against H1N1. But the set-up for getting vaccinated in Quebec is totally convoluted and well beyond my abilities. It's autistic-inaccessible (at least, for this autistic). I've been vaccinated against the flu every year for as long as I can remember, but this year of all years it looks like I won't be able to.

Edited by author 10-31-2009 07:18 PM
I don't know if anyone here regularly reads Kristina Chew's blog. Over the past while I've tweeted two of her posts about what her autistic son Charlie has been subject to, after spending most of his life in ABA programs.

Here is one post http://autism.typepad.com/autism/2009/09/5...ts-of-interest.html , where you should follow the links re the helmet and restraints.

My wild guess as to the the college Kristina refers to here...

"a college at which one can earn a Master's degree in ABA. One can also earn a post-baccalaureate certificate in ABA, and a Ph.D. program was recently started"

... is this one http://www.apbahome.net/news.php?nid=33 , here being touted as state-of-the-art by its directors with the help of the Association of Professional Behavior Analysts. The APBA is extremely unlikely to be even slightly concerned about the negative effects of behaviour analysts' conflicts of interest on autistics. Or about any negative effects of any highly-respected ABA programs on autistics (the APBA has an autistic-free autism task force, which does include a "parent advocate").

Here is a later post about Charlie's situation http://autism.typepad.com/autism/2009/10/t...de-the-aba-box.html I suggest, if you can, continuing to read onwards as to what Charlie is living through. The only proposed solution is more ABA programs.

I'm not going to comment on any of this, beyond pointing at the conflicts of interest (an unaddressed problem that permeates the entire area of behaviour analysis in autism), and at the grossly unethical use of restraints and a helmet (very hard to read when you identify totally with Charlie), and at the reported consequences of this to Charlie.

The other thing to point out, again, without comment, is that Charlie has been in ABA programs most of his life, according to what Kristina has written. Here she is promoting ABA on the Lovaas Institute site http://www.lovaas.com/meetingpoint-2007-06-feature-02.php

How big is a cell (and a lot of other things)? See http://learn.genetics.utah.edu/content/begin/cells/scale/ which goes right down to a carbon atom, with an amoeba, a chromosome, a measles virus, etc., on the way. Found via Ben Goldacre (him again!).

"Behavior therapy---ABA, behavioral science, however you may call it---is not helping Charlie's behavior problems. In fact, it may have even made them worse. [...] Indeed, it was precisely because Charlie had so many 'behavioral challenges' that we stuck with ABA over the years."

That's more from Kristina Chew http://autism.typepad.com/autism/2009/11/the-limits-of-aba.html and again no comment.

Edited by author 11-02-2009 05:39 AM
News story in the Guardian today: 'Father in high court to stop hospital withdrawing baby son's life support' (That's the headline in the print edition). See http://www.guardian.co.uk/uk/2009/nov/01/f...-support-baby-court.

"A father whose son was born with a rare neuromuscular condition will go to the high court today in an attempt to stop a hospital withdrawing the support that keeps the child alive.

"Doctors treating the one-year-old say the boy's quality of life is so poor that it would not be in his best interests to save him. They are reportedly being supported in their action by the baby's mother, who is separated from his father.

"The child, known for legal reasons as Baby RB, was born with congenital myasthenic syndrome (CMS), a muscle condition that severely limits movement and the ability to breathe independently. He has been in hospital since birth.

"If the hospital succeeds in its application, it will be the first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage.

"Lawyers for the father say that the child's brain is not affected by the condition, arguing that he can see, hear and feel, and recognise his parents. He is also apparently able to play with toys. The father will try to convine the court that his son has a good quality of life by submitting video footage showing the boy engaging with his parents and playing with his toys."

That boy has every right to life. It would be totally wrong for his life support to be withdrawn.

Thanks for the link. I think my son Henry will love it. I remember him aged just four or five at a museum with his school and the class being asked what a certain puppet was made of and he replied 'um, atoms?' which started the teacher and made me laugh a lot.
I thought this interview with Rory Hoy might be interesting to you as he never had any 'specialist treatment' or therapies (except speech therapy) and in his film he describes his parents leaving him alone to stim as much as he liked. I imagine if they had ABA'd him and he'd turned out the way he has, he'd be an ABA poster boy now. Mind you, I doubt he would be as happy or creative.

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Michelle, regarding vaccination, which borrough do you live in? I can look it up where you need to be vaccinated.

In my case, I can get vaccinated on the 7 of december at a local college and I don't think it will be different for you (I register as a healthy adult but if you have a chronic illness of any kind, you may be allowed to vaccinate sooner).

Alain

here's a region's map of Montreal regarding the vaccination campaign: http://vaccination.msss.gouv.qc.ca/carte_region_en.php?region=06

all the vaccination center I looked up on this map are open from 8am to 8pm 7 day of the week.

if you need more help, let me know.

Alain

Edited by author 11-03-2009 08:23 PM
My presentation yesterday in Toronto (for this course http://www.cs.toronto.edu/~khai/classes/cs...l2009/schedule.html ) went well. This was the first Canadian university course I've ever attended.

There were good questions and a lot of good discussion before and after.

The building I was in, where the U of T Dept. of Computer Science lives, is beautiful and fascinating, composed of three different buildings (two older buildings, one much newer) stuck together.

Thanks Alain. One problem is I don't deal well with situations involving long line-ups and so on. I prepare for *months* before attempting to renew my health care card, for example, and that doesn't involve an actual line-up as such (though it does involve waiting a long time for anything to happen, as people mill around making a lot of noise, then having to follow a bunch of instructions).

For TMoB types who don't follow me on Twitter, here's a paper http://www.indianjpsychiatry.org/temp/Indi...-6711388_183833.pdf (that's a free pdf) best summarized by a statement in the abstract:

"We report here a case of autistic disorder who recovered spontaneously without any intervention in 13 days."

This was a 5yr old boy, "P," whose CARS scores plummeted from 40.5 ("severe autism") to 18 in less than two weeks. The lowest anyone can score on the CARS--the score you get if you are deemed absolutely typical (per the traits and abilities addressed by the CARS)--is 15. The threshold for autism is 30.

The study's authors falsely claim that Temple Grandin has "recovered" from Asperger's (and claim that this has been documented via "authentic, scientific reports," none of which is cited). A 1974 study that I'm familiar with, about 2 children "recovering" from autism (Gajzago & Prior, 1974), is referenced as well as the paper reporting on Catherine Maurice's two children (Perry et al., 1995).

About the children who are reported as "recovered" in Lovaas (1987) and McEachin et al. (1993), the authors write, "Outcome of specific autism symptoms was not described in these reports." Lovaas et al. get lumped in with reports of "recovery" from the Autism Research Institute: "it is difficult to be sure about the level of recovery in the above instances." There is no mention of the work of Deborah Fein and colleagues, which the authors somehow missed in their reported PubMed and google searches.

The authors write: "We have not come across any other case in which recovery took place spontaneously and so rapidly." They point out that while this might be rare, those working with autistic children "must know that this can happen."

Edited by author 11-03-2009 10:55 PM
A lot of highly questionable, mostly very politicized (as opposed to scientific and ethical), views about the diagnosis of Asperger's http://www.nytimes.com/2009/11/03/health/03asperger.html http://www.theglobeandmail.com/life/health...nge/article1350207/ http://www.cbc.ca/health/story/2009/11/03/...dsm-psychiatry.html

Neither story from the Canadian media includes any views quoted from autistics or from researchers.

In the NYT, Catherine Lord's relevant conflicts of interest are not reported. She developed and owns the two "gold-standard" autism diagnostic instruments, neither of which includes any established way to distinguish autism from Asperger's. This makes her views unsurprising. Also, the fact that many clinicians diagnose autism according to free-for-all-type standards does not mean that this is okay.

Re Asperger's and "mild" autism or "severity" of autism and generally the arbitrariness and expediency with which autistics are often ranked and classified, there are two quotes from the literature here http://autismcrisis.blogspot.com/2009/01/v...utism-severity.html

Michelle, what do you think about the proposed reclassifications? My son has an Aspergers diagnosis, though if I tell people anything, I tend to say that he is autistic, partly because people understand that better (and I tend only to talk to strangers about his autism in situations where he is plainly not coping and I need a bit of empathy and understanding for him)so am intrigued as to what, if anything, would happen here re reclassification. Also what do you think of the proposed grading for severity? Do you think it would be useful or misleading?

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In response to Leah, re autism "severity" and the DSM-V, see http://autismcrisis.blogspot.com/2009/06/n...rity-and-dsm-v.html

Asperger's is currently considered to be a form of autism (this is the overwhelming scientific consensus; the disagreement is whether autism and Asperger's differ at a group level in any important way), so calling Asperger individuals "autistic" is accurate.

In my view, there is enough evidence for differences between autism and Asperger's, differences which can be important for research, to retain the distinction for now, at least in some areas of research.

The evidence might not eventually hold up. But for now dismissing it entirely is probably not a good idea and in some areas denying any group-level distinction has been shown to be misleading in important ways (e.g., Wechsler profiles, as in Mottron, 2004).

The notion that there is a scientific consensus in this area (denying any relevant group differences between autism and Asperger's) is not entirely accurate, though researchers who support a distinction don't necessarily do so for the same reasons.

LBRB falsely diagnoses Temple Grandin with Asperger's (just like the authors whose work is described in /m9885 ) http://leftbrainrightbrain.co.uk/?p=3464 but of course I'm barred from commenting there, on the Hub's flagship example-setting blog.