Hi Ed, nice to see you here. Posting links like you did is fine (that's what I do) though you can use html tags too. The "Monster study" is well-known as an example of how harmful bad ethics and bad science can be.

At IMFAR once, I asked someone with a poster a few questions (I don't do this often, mostly I just look at the data). It turned out that he stuttered. I don't know why but I found his (very non-fluent) speech easier to understand than I usually do with people I've never spoken with before.

From a BBC story http://news.bbc.co.uk/2/hi/uk_news/7891119.stm :

"Under Olympic and Paralympic regulations, men can compete in 164 events while women can only enter 124."

I had no idea the discrepancy was still that big, though it must be much smaller than it used to be. In the dim, dark past of my youth, it was considered appalling or ridiculous for women to play ice hockey, wrestle or lift weights... In Canada, there's been a lot of noise recently about the current refusal to include women's ski jumping in the winter Olympics.

Then there's the situation in equestrian sports, where male and female athletes, human and equine, compete against each other as equals in all Olympic events--and this has been the case for a long time.

I'd like to hear that show, Michelle

This is an article I read and found interesting a couple days ago about the treatments for stuttering in the past:

http://www.vachss.com/help_text/archive/monster_study1.html

(first time posting here, I hope I did that right.)

Scroll down to "HOUR TWO" here http://www.cbc.ca/radioshows/THE_SUNDAY_EDITION/20090215.shtml where there's a description of a documentary called "The sound of my voice," which is about a guy who stutters. I missed chunks of it, but what I heard was interesting. Unfortunately I can't see any way to actually hear it online now that it's aired. Here's part of the documentary description:

----------------------------------------------------------- ---------------

Andrew McIntosh has never filled his mouth with pebbles, but he's tried just about every other therapy and trick to get rid of his stutter.

He saw speech pathologists as a child, and then again in university. As a young adult, he slogged through programs aimed at "fluency in speech."

Now Andrew Mcintosh is 33, living and working in Toronto, and he's declared the "treatment" chapter of his life over and closed. In fact, he and his stutter have a whole new relationship. Some people might squirm, but Andrew Macintosh is putting himself out there, for all the world to hear.

---------------------------------------------------------- ----------------

Article in the Charlottetown Guardian about a local Junior High School being the first in Canada to try the T.R.A.P. program - "a rhythm-based educational system for people with special needs that integrates drums and percussion instruments as creative learning tools that address life skills and enhance the mind, body and spirit" - with 6 special needs students.

"The Rhythmic Arts Project (T.R.A.P.) was designed by California drummer Eddie Tuduri during his recovery from a broken neck in 1997."

http://www.theguardian.pe.ca/index.cfm?sid=222050&sc=100

Edited by author 02-14-2009 04:18 PM
In response to Jennifer, I did write ( in /m8907 ): "And you can always try asking one of the authors..."

Many authors are hugely generous with papers, including in press papers that aren't epublished yet (ergo, are not available). Others are not so generous (even with other researchers), with papers or information and so on.

In further response to MalchowMama ( /m8901 ), there are journals in all different languages. You can sometimes get English language abstracts of non-English papers on PubMed. But if you need a translation of a paper, usually you have to get it done yourself. And sorry, I don't know whether there are PubMed equivalents in other languages that would provide abstracts (e.g., of English papers) in those other languages.

By the way, some of my informal writing has been translated into German (I gave permission for this and am very happy about it). Here's TMoB (the small article, not the very large comment board) in German http://autismus-kultur.de/autismus/politik...tensanalytiker.html Here's a blog post (the original is here http://autismcrisis.blogspot.com/2008/11/aba-success-stories.html ) about "ABA success stories" http://genderqueer.de/geschichte/aba-erfolgsgeschichten/

Re the confusing statement, one thing I do is treat ABA like a science. It's supposed to be a science and I go along with this. Interestingly, this is a major reason I've been (and continue to be) vilified by autism advocates (including behaviour analysts)--I've taken ABA seriously as a science.

I can and sometimes do use the terms that behaviour analysts use. But this doesn't mean that I accept the behaviour analytic (this covers both ABA and the foundation of ABA, which is the experimental analysis of behaviour) world view, or behaviour analytic standards, or that behaviour analysis is the only science relevant to behaviour.

If you look at the comments on the post MalchowMama refers to (here http://autismcrisis.blogspot.com/2009/01/o...a-based-autism.html ), you'll see a behaviour analyst assuming that cognitive science doesn't involve anything measurable. That is amazing and gives an idea of how isolated behaviour analysts can be from other fields of science, while still being prepared to make all-encompassing statements about these other fields.

One other way of getting a copy of a paper, which I don't think Michelle mentioned, is to write to the authors directly and ask for a paper reprint, or a PDF version. Most authors are very pleased to have interest in their work shown. The advantage of this approach is that should you have questions about the paper, you have already a communication line open to ask them.

Edited by author 02-13-2009 10:11 PM
More sloppy thoughts about finding papers...

If you want a place where the full text of all papers is free, there's PubMed Central, which is here http://www.pubmedcentral.nih.gov/ You can search there according to subjects, authors, etc. More and more papers are going to be available here, as public and some private funding bodies start requiring researchers to provide their published work to the public as open access (free) papers. One catch is that there might be a delay (6 months to a year) after publication, in papers showing up on PubMed Central.

Then there are many, many journals where some, most or all the papers are free online. The "all" category includes all the PLoS (Public Library of Science) and BMC (BioMed Central) journals. Ben Goldacre's (him again!) column today http://www.badscience.net/2009/02/pay-to-play/ , which is up to his usual excellent standards, is about a just-published paper in the BMJ (British Medical Journal), which means you're in luck. All peer-reviewed research in the BMJ is now free, right away. The paper Ben Goldacre refers to is here http://www.bmj.com/cgi/content/abstract/338/feb12_2/b354

Both of the flagship behaviour analytic journals (JABA and JEAB) provide all their articles free (right back to the beginning in the 60s and 50s respectively) after a delay of 6 months. You can get JABA and JEAB articles via the journals' website or in PubMed Central, or via PubMed searches.

Many university-based researchers and research groups have publications pages where they not only provide lists of their papers, but also provide free PDFs of some or many of them. Marcel Just has a publications page with a lot of free pdfs http://www.ccbi.cmu.edu/reprints/reprints.htm (and an explicit copyright notice) which show off the range of his work. I know of many other such pages, though they may come and go. When he was at Yale, Robert Schultz made most of his papers freely available on the Yale neuroimaging site; now that he's in Philadelphia, these papers are no longer up.

Many journals which aren't generally open access often now have some free articles or free issues. But some journals are unavailable online (even if you want to pay...) for some time periods, or altogether. Then things are more difficult. If you live near a university or know someone who does, you can check in the university's catalogue (which you might be able to search online) and possibly then go to the university and (ploddingly, as I did for a long time) locate the journal, pull it off the shelf, and make notes or photocopies.

I forgot to mention that Google Scholar's scope is much wider than PubMed's, not just in formats but also in subject matter. PubMed is hit and miss in some areas, like with education-related journals. Also, there are other places and ways to search for papers, dissertations, scholarly books and book chapters, etc., not all of them freely available (ProQuest, PsycInfo...). Public libraries may have online databases that include peer-reviewed journals (one near where I live does; I used this before I had a computer). And you can always try asking one of the authors...

So that's a sloppy incomplete answer to questions like, "how do I find papers...". Mostly, just looking around (using very basic searches) will often do it if you are slightly persistent. Some papers are just very difficult to find (even finding out about them might be difficult, never mind getting the actual paper), but more and more papers are becoming easier and easier to find. This is a very good thing.

And of course I haven't answered all of MalchowMama's questions but I've run out of time. I'll get back to the rest a bit later.

Edited by author 02-13-2009 09:18 PM
Continued from previous message, and keep in mind this is just me going on and on in a sloppy way about various ways to find papers, if you want to find papers.

So... let's say I want that same specific paper (Dr Chau's new paper using NIRS) and only know the name of one of the authors (not the journal name or the paper title) and the author's page isn't helpful. Then there's PubMed, which anyone can use and is totally free. It's here http://www.ncbi.nlm.nih.gov/sites/entrez

Even a really sloppy search (let's say you don't want to spend a lot of time learning all the PubMed search rules) for "Chau T" will find his new paper, which is on PubMed here http://www.ncbi.nlm.nih.gov/pubmed/19104138

You can also search for subjects (e.g., "autism" or "infrared spectroscopy" etc.) on PubMed and they also have a journals database (you can also call up all the articles within a journal or search for authors or subjects within a journal). Not all journals show up on PubMed, and not all journals that do show up are peer-reviewed.

PubMed will often tell you (in various ways; they change their format often) whether there's a free copy of a paper anywhere PubMed cares about. In the case of Dr Chau's new paper, PubMed hasn't cottoned on; maybe they will eventually, or maybe the paper is freely available only for a short while (just wild guessing here).

Let's say you haven't already looked up the journal and found that the paper is free. PubMed will give you the title of the paper, which you can then Google. In this case, just with a plain old Google search of the title, you'll find the paper's abstract (here http://www.iop.org/EJ/abstract/1741-2552/6/1/016003 ) right away and find that the paper is free.

Things aren't always so easy. It's often better to use a Google Scholar search (here http://scholar.google.com/ ). Enter the study title there and you'll be beamed right over to the abstract and the free paper. Google scholar will often give several possible versions of a paper, and if you click on the number of versions, if there's a free pdf or other form of the full text of the paper, this is now indicated (this is a newish feature).

You can also look up authors on Google scholar, and find which of their papers you can look at for free, as well as looking up subjects and so on. Google Scholar will produce informal (e.g., unpublished) articles sometimes as well as dissertations, books and book chapters (these may be linked to Google Books, where you can of course search for and within scholarly books about autism or anything else) which you won't find via PubMed.

I've used up all my links again and of course I'm not done yet. To be continued....

Catching up in no order whatsoever... locked-in syndrome has been one of my strong interests for reasons you can find way, way back in the dim past of TMoB.

Here's a recent (not particularly good) relevant media story http://www.time.com/time/health/article/0,8599,1878772,00.html , there's even a photo from the film "The Diving Bell and the Butterfly" ( /m8895 , /m8896 ). So let's say you want to see the Tom Chau paper referred to in this story. I wanted to see it (I found out about it from a different source), not just because of the general area (brain/computer inferfaces), but also because of the method used (near infrared spectroscopy or NIRS).

So I looked up the journal, which is here http://www.iop.org/EJ/journal/JNE and found that the paper is available for free, see http://www.iop.org/EJ/toc/1741-2552/6/1

That's just one way to find papers. In this case, I knew the name of one of the authors and the journal name, which makes things very easy. Another way to find the paper--let's say you don't know the journal name, but only one of the authors--might be to look up the mentioned author, in this case Tom Chau (who is very well-known). Here's his page http://www.bloorview.ca/research/scientistprofiles/chau.php , which doesn't yet have the paper I wanted (so if I didn't already know the journal name, I'm still out of luck), but shows other work he's done, which I might also be interested in.

I've just run TMoB's cranky quota of links, so I'll continue this in another message....

In the "ugly autism metaphor" department, from Kent Heckenlively, Esq. at AoA

"It can be difficult for a person who does not live our lives to understand what we have witnessed, and the holocaust we see in this current generation of children."

"Potato"...
true to his Irish roots...
:)

My apologies for all the typos on my last post; Sam was sitting in my lap.

I think Sam is going to be speaking sooner rather than later. He has been saying "mama", "dada", and "baby" quite a bit (often together). I'm also fairly certain that I heard him say "let go" when I was checking to see if his testicle had descended (it has not), and I'm positive he said "potato" several times when I was peeling them today for lunch.

Regarding /m8887 , Sorry to be so thick, but I've run across a few things like this:

"Also, not everyone sees the entire world in behaviour analytic terms. Some of us (regardless that we may be informed about behaviour analytic terminology, including the behaviour analytic meaning of "punishment") consider that there are things like cognitive processes and so on."

which is from a comment you made under your January 26, 2009 blog "The origins of ABA-based autism interventions." I find your writing very accessible, but sometimes I wonder if I am understanding all the terms correctly. Anyway, thank you for your examples.

Re: m/8897 , congratulations to Dr. Gernsbacher, and good news for science. I have been reading and re-reading many of her papers, and find it fascinating, though some is admittedly over my head. I am hoping that the Speech Therapist and/or Doctors we work with here may be interested in reading some of her (and Ms. Dawson's) work as well, if it is available in German on whatever the German version of sites like Pub-Med may be. I have no idea what they have here, but it seems likely there must be translations of some of this available.

Actually, I was wondering how I might access more articles, and what governs which papers are available for free and which must be paid for (is that up to the author, or based on publishing dates?), as there are so many articles I am inteested in reading. I feel very ignaorant about using sites like Pub-Med at the moment (am I even eligible? Are articles paid per, or do you subscribe for access to all?).

Re: m/8900 , you are dead right, Philip. In fact, it will be considered further evidence of the "conspiracy." I recieved an email from one of my anti-vaccine friends just the other day, and she was discussing how she had been reading "tons of books" on the matter, but I don't think she's afraid of autism, even. Just vague concerns about ingredients (mercury, formaldehyde), talk of "scaremongering by the medical profession to make you mistrust your own immune system", and a belief that, regarding the mumps that both she and an adult male friend had recently, "side effects are quite uncommon", though she allows that vaccines may be ok for "more serious diseases." She knows I disagree with her on all of this.

The decisions by the special court will not change the opinions of those people who believe that autism is caused by vaccines.

Further to /m8898 , if you want to see the decisions released today, they are here http://www.uscfc.uscourts.gov/node/5026