Please visit James Cucek's web page:

http://sites.google.com/site/autismhome/Ho...k/james-photo-album

Please go to search and put my name James Cucek, and you will see photos
of all my mom has done regarding autism.

What kind of music does your brain make? See http://scienceblogs.com/neurotopia/2009/06...ic_of_the_brain.php about a new study wherein EEGs under various conditions are transformed into musical scores.

There's a link to the (free) paper http://www.plosone.org/article/info%3Adoi%...ournal.pone.0005915 which in turn has links to examples of brain-composed music. The music sample files are big, unfortunately.

Re: m/9285 I visited the site. Mrs. Cucek, I am confused as to why you would post this here. This particular discussion board is not really suited to self-congratulating parents who are keen to put their children in ABA therapy. Rather the opposite. There are many other sites where you will get the praise you seem to be seeking. The articles on your site are so typical of what I see as being a problem: much praise of parents for putting up with their autistic children ("The Cuceks have been dealing with an autistic child every day for the past 20 years" "It's way harder than being a marine", etc.), much praise of parents for "leading the charge" to get interventions for their child (how many times does this site mention that you were a marine?!), serious lack of scientific understanding (you "believe" vaccines caused James' autism, despite a complete lack of scientific evidence), and a lack of understanding about what Lovaas and ABA are (I am not an expert in this area, but my understanding is that ABA is the treatment developed by Lovaas (among others), and there is little or no difference between so-called Lovaas therapy and ABA, except that perhaps Lovaas is harsher?).

And, incidentally, James' website appears to actually be your website, about you and James. Unless James usually refers to himself in the third person?

Edited by author 06-21-2009 06:30 AM
Ms Cucek posts something here on TMoB very occasionally.

In fact anyone is welcome here so long as they are polite and interested in genuine exchange of information. We've had several behaviour analysts post here, not all of whom behaved badly.

Here is an article about Ms Cucek and her son. I believe it was the first I read about them http://www.autismtoday.com/articles/promise.htm :

"In local British Columbia newscasts seen over the past two years, viewers are privy to seeing the amazing musical talent of James Cucek. He plays piano beautifully although he has never had lessons. He has a dream of becoming like Glenn Gould, another former sufferer of an Autism Spectrum Disorder (ASD) and one of Canada's greatest musical talents. James is not playing as much as he used to because of the pain he suffers while taking various prescription medications. Sometimes he has to be hospitalized to be stabilized on medications. Stan and Linda watch helplessly as their son James crawls along the hospital corridors. "I want my boy back," laments Linda."

Autism advocacy leaders have a whole lot to answer for, including the extreme writing off of autistics who are not in ABA programs, and the extreme denial to autistics of even the most basic standards of science and ethics (including professional ethics).

Ms Cucek lost her case at the BC Human Rights Tribunal. You can read the decision here http://www.bchrt.bc.ca/decisions/2005/pdf/..._2005_BCHRT_247.pdf

ABA is a field of applied science, based on the experimental analysis of behaviour. ABA (the field of science) was formally defined in 1968 by three famous behaviour analysts, none of whom was Lovaas, in a paper that does not mention autism.

As it is formally defined, ABA is not a treatment (it is a field of science) and it was not developed by Lovaas. I could go on and on... e.g., about what Lovaas did in fact do. But instead, how about if anyone has questions, fire away... I do have a blog post about the first use of operant conditioning with a human being http://autismcrisis.blogspot.com/2009/01/o...a-based-autism.html ...

Sorry, Michelle, my post does sound harsh, and you, as always, are far more civilised. I was just genuinely confused as to why someone would choose this board to post something of that nature. I hope I didn't imply that Mrs. Cucek *shouldn't* post here (what right would I possibly have to decide that!).

Interesting what that article you quote says about Glenn Gould: he is a "former sufferer"? Does that mean that he is no longer considered autistic, or that he no longer suffers from being autistic??

I guess all Mr. Gould's "suffering" ended when he died.....

Hi Michelle,

You've expressed concern about statements made by ASAN (the Autistic Self-Advocacy Network, http://www.autisticadvocacy.org) supporting replacement of education/intervention programs that employ aversives, restraints, seclusion, etc. with alternatives that do not, "like Positive Behavior Supports" (PBS).

You've illustrated the horns-of-a-dilemma that that position brings us up against.

On the one hand, PBS itself is a form of ABA, and as such (at least as represented in the literature) shares goals and values that characterize autistic traits and strengths as undesirable and call for suppressing and extinguishing them and replacing them with nonautistic traits characterized as desirable. This is bad for autistics. Moreover, the evidence base in the literature for the efficacy of PBS (and ABA in general) is of poor quality.

On the other hand, there is even *less* evidence base in the literature for the efficacy of alternatives that do not share these goals and values.

So opting for *either* of these choices, in a strategy to get rid of aversives, etc., by replacing programs that use them with programs that do not, without adequate published evidence about such replacement programs, has the bad-for-autistics effect of endorsing the poor standards of science that currently exists regarding autism and autistics.

Given all that, what do you think are better ways for autistics (whether through ASAN or otherwise) to work to get rid of aversives, etc., that autistics are faced with?

Edited by author 06-21-2009 09:09 PM
Hi Phil,

I see many more problems with ABA-based interventions, including PBS, than those you list. Also I disagree that the dilemma you state actually exists. But I'll set that aside for now. Here are a few suggestions:

1. Don't promote interventions that are not supported by good quality evidence ("good quality" encompasses both scientific and ethical considerations), in this case, PBS/ABA. This kind of promotion is very bad science and very bad ethics, with a huge range (could write a book...) of very bad consequences for autistics.

I made this suggestion to ASAN a long time ago, when I first noticed their promotion of ABA/PBS, but as with all concerns I have raised about this issue, it was rejected by ASAN (uh, in no uncertain terms, to put it more politely than they did).

2. This is related to the first but more specific. Don't promote the view that there are only two choices, nonaversive ABA/PBS-based interventions, or aversive ABA-based interventions (or restraints or seclusion or whatever). Given the poor quality of the evidence supporting ABA/PBS, the consequences of this to autistics, many of whom will fail in ABA/PBS programs, should be obvious.

3. Read the literature, before you make public policy level demands that will affect the lives of all autistics (and will affect autism research). I know that in the current era of autism advocacy and autism politics, this is probably considered a totally radical suggestion, possibly beyond the pale (consistent with the reactions I have received), but it is my suggestion.

You would notice a major paper like Tyrer et al. (2008), which has appeared on my blog many times now (and is featured in the presentation I do about quality of autism intervention research). This paper shows the importance of good experimental design (it is a multi-site RCT) and strongly calls into question how so-called "aggressive challenging behaviours" are regarded and treated in developmentally disabled people (including autistics).

Like all studies, it has flaws, but the authors of Tyrer et al. (2008) took the position that developmentally disabled people deserve recognized standards of science and ethics. I agree with them. That is a good position to take.

This is not the only (rare) example I can find of researchers, in spite of all the lobbying by organizations that now include ASAN, regardless insisting that autistics deserve good experimental design. But it's a good place to start.

And yes, I sent this information to ASAN a long time ago, reminded them about it, have written about Tyrer et al. (2008) several times on my blog (and here also I believe), and so on, but ASAN has shown no interest whatsoever, and of course there were all those on-no-uncertain-terms indications that it was totally out of line for me to question their position.

Edited by author 06-22-2009 12:08 AM
The well-known behaviour analyst Edward Carr (see http://www.psychology.sunysb.edu/psycholog...le/faculty/ted_carr ) has been killed in a car accident http://www.nypost.com/seven/06212009/news/...k_driver_175404.htm and http://www.newsday.com/news/local/suffolk/...n21,0,4610612.story

For some time Dr Carr worked with Ivar Lovaas, and once authored with him a book chapter about the use of electric shock in ABA programs (Carr & Lovaas, 1983). Dr Carr went on to be a major figure in PBS.

Glenn Gould did not receive ABA-based interventions.

Hi Michelle

In /m9289 you refer to ABA as a field of applied science. I have often seen ABA based therapy proponents call ABA a science. I was thinking and reading about this a few days ago. I don't think it qualifies as a science as I wrote here.
I'd welcome your comments.

Also, there's a big ABA conference on my doorstep in Belfast this weekend. I might call into the city to meet a blog friend who'll be there.

It's got some of the big names like Gina Green and Bobby Newman. I'll not be spending £60 to attend though I would like to hear for myself what they have to say.

Sharon, I did set out to respond to your very interesting comments today, several times. But stuff happens, and happens, and happens... (I have rodents again! How nice, they missed me and they're back). It's definitely not been my day. I'll try to have better luck tomorrow. Or rather [sigh] later today.

Hi Michelle,

I hope the rodents soon leave your apartment.

Blast those critters with their tails and whiskers. I hope they find somewhere else to scurry where they'll be more welcome and leave you in peace.

Hello Michelle and others.

Does any of you know if there is a french version of this Globe and Mail article?

http://www.theglobeandmail.com/news/techno...est/article1184701/

Thank you all.