Edited by author 08-03-2007 11:22 AM
I've finally managed to blog about the ABA study Patricia Howlin presented at IMFAR this year. This study (which has been in press for a while) has recently become available online. See http://autismcrisis.blogspot.com/2007/08/a...ntrolled-trial.html , where you can find a link to the study's abstract and me grumpily rambling on about the data.

Two articles about a truly "horrible illness", measles. The BBC reports an outbreak among non-vaccinated young children in the UK http://news.bbc.co.uk/2/hi/uk_news/england...rkshire/6929671.stm and the International Herald Tribune reports about how the UK (and possibly other rich countries) are exporting measles to other countries http://www.iht.com/articles/ap/2007/08/03/...porting-Measles.php I'm pretty sure the UK has done an impressive job of exporting mumps also.

Edited by author 08-03-2007 02:15 PM
News story in the Guardian yesterday: "Pioneer brain implants allow minimally conscious patient to eat, drink and talk." See http://www.guardian.co.uk/science/2007/aug/02/3.

A 38-year-old American man who suffered devastating brain damage during a street robbery in 1999, and who has spent more than six years in a near-vegetative state, has made a dramaic recovery following a pioneering treatment to stimulate his brain with electrical pulses.

Also in yesterday's Guardian in the Private Lives problem page: "I'm carrying a burden that's helping no one". See http://www.guardian.co.uk/g2/story/0,,2139680,00.html.

Problem posed by a woman whose daughter has an autistic son. When he was five years old, (he's now aged 11) his mother asked her mother to promise not not to tell her (the grandmother's) husband that his grandson is autistic. Because he doesn't know about his grandson's autism, "he is very critical and unkind in his assessment of the way my daughter and her husband have treated their son and how they have brought him up."

She asks how does "she move forward without offending my daughter or my husband?"

Further to /m6496, of the 157 persons who gave written and oral evidence, or oral evidence only, or written evidence only to the Committee of Inquiry, only 3 were patients. One gave oral evidence only, and two gave written evidence only.

So far as I know (and last I heard), none of us (the authors of the paper) had anything to do with this press release http://www.eurekalert.org/pub_releases/2007-08/afps-tmo080307.php

While I detect that its heart is trying to be in the right place (it doesn't suffer from person-first language, e.g.), there are many inaccuracies in the press release, and some not-okay language (e.g., calling the control group children "normal").

Example of one inaccuracy: contrary to what is claimed in the press release, it is well-recognized that for non-autistics, performing well on RPM (solving all but the simplest items) requires language abilities. This was in my original IMFAR poster. Example of another: we mention "idiot savants" in the paper but point out that the term is no longer used. Another: one of the researchers is not Canadian. Another: "obsessed with detail"?! Another: the usual assumption that language means speech. Etc. Etc.

Inaccurate (and misleading, etc) press releases are one of the many ways in which the field of autism research disgraces itself. Now here's one about our paper. Yes [racks memory], we were asked if we wanted a press release, but when it came to it, we didn't (too busy anyway). So it looks like we were given one anyway. Well, lesson learned.

I wish autism weren't called a disease in this story http://www.2theadvocate.com/features/8903962.html?showAll=y&c=y , but some of this is pretty good. Mike is 12 and communicates via letterboard. He's being quoted here:

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

“I have never had a real friend, because I cannot talk with them even though I understand everything they say to me.

“But, there are others just like me in Austin. They talk using letterboards too. I have already made 3 friends in Austin who are just like me. I can talk to them. I like them. One of them is a girl.”

His mother said Mike, Mitch and Madison became “instant friends” when they first met in Austin.

“It was like they were long-lost friends,” she said.

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

So much for that autistic profound social deficit.

Mike also points out that "Some children who can talk make fun of people who can’t talk." Shouldn't those "children who can talk" be put into social skills training programs?

In the "slow thinking" dept., good grief, re the previous post [looks thunderstruck], is the Amy Holmes in that article the mercury-in-hair Holmes (see http://autismdiva.blogspot.com/2005/12/dr-...trying-to-help.html )? Well, wouldn't that explain autism being called a "disease". But Dr Holmes has this very cool autistic kid who is smarter than nearly the entire population of America. And does her taking up with Soma Mukhopadhyay (Tito's mother) mean that she's given up on DAN!?

"McCarron confession ruled admissible" http://www.pjstar.com/stories/080407/TRI_BDVIU4E2.044.php

"A confession a Morton mother made at a Peoria hospital about allegedly killing her daughter last year will be admissible during her trial, a Tazewell County judge ruled Friday."

So the attempt by Karen McCarron to have her confession ruled inadmissible failed. In this confession, Karen McCarron describes killing her autistic daughter Katie, and says that she "wanted a life without autism".

As posted on the Internet:
--------------
Dr. Amy Holmes: In Her Own Words
A compilation from Internet discussion group postings
 
 
* * * * * *
 
 
I can tell you what I did to my son:
1. had 21 amalgam fillings in my mouth while I was pregnant
2. ate tuna at least 3 times a week while pregnant
3. use thimerosal-containing contact lens solution while pregnant.
4. he got all vaccines "on time", all the ones that could have possibly contained mercury did
contain it. >>Amy
my son Mike - DOB 10/18/94
Unremarkable pregnancy.
Born by planned C-section (advanced maternal age and very large baby). Weight 9 pounds, 2 oz.
Very healthy. Apgars 8/9.
Uneventful first year. Got all immunizations on time.
Sat at 4 months, crawled at 7 months, walked at 10 months.
Spoke first word at 9 months. By 12 months, had 10 to 15 words. Good eye contact, good imitative skills, very social. Stopped talking 5 days after MMR plus Hep B at 12 months, gradually lost all imitative skills, all interaction and eye contact.
By 18 months was in his own world. Would not even respond to his name. We asked everyone why he was acting this way, including several pediatricians - no answers.
Finally diagnosed as autistic at 26 months. We began an intensive ABA program (Lovaas) at 28 months. We took him to see Dr. Stephanie Cave at 29 months. She ran a number of tests, including hair analysis for heavy metals. He was very high in lead, aluminum, and antimony. Mercury was only slightly elevated. She gave him DMSA 100 three times a day for 5 days,
followed by 100 mg twice a day for 2 weeks (the old treatment).
By 1 month after this first chelation course, he had improved noticeably - behavior was better, no longer as "zoned out" as before, was no longer pale, looked healthier. Repeated the hair analysis several months later. This showed a significant drop in lead, but still high antimony and
aluminum, and to our surprise, a high level of mercury. No one knew what this meant at the time - this subsequent high level of mercury meant that mercury had been mobilized back into the bloodstream, thus could finally show up in the hair. Looking back, if we had realized the significance of this finding then, Mike would be completely recovered now.

After this, we pursued other areas like getting rid of yeast and pathogenic bacteria, gluten and casein-free diet, getting rid of multiple food allergies, and did not return to the heavy metal issue
until he was 4 years old. By this time, I had taken over his case. I repeated a hair analysis for heavy metals when he was 4. Mercury had dropped (of course - it had gone back into its favorite storage areas), but aluminum and antimony were still very, very high, and the lead was back up
to elevated range. I started him on a kinder, gentler course using DMSA 200 mg TID for 3 days, off for 11 days while repleting minerals. I repeated this 2 week cycle for a total of 4 cycles, then got a toxic urine screen on the last cycle. To my surprise, tons of mercury were coming out. That is when I started investigating mercury-autism connection in Mike's case. After a few weeks, I was convinced that mercury was responsible for a lot of his problems, so we continued with the same 2 week cycles of DMSA for several more months, repeated the urine toxic metal screen with almost the same findings.
From April of 1999 to the present, I have been doing these 2 week cycles, 4 to 6 at a time, then allowing him a month off now and then to fully recover from the chelation. We got a urine toxic
metal screen last month (4/00) which showed mercury at 2.7 ("normal" range 0 - 3). This is the first time he has ever been in the "normal" range for mercury (provocative urine). One year ago, Mike was essentially non-verbal and preferred to engage in meaningless self-stimulatory behaviors. Today (5/00), he speaks in sentences, addresses people by name to get their attention, and no longer "stims" non-stop. His receptive language is excellent, expressive is still 2 years behind his peers (but is catching up fast). His pronunciation, which had been so bad as to make
any words completely unintelligible, is now improving to the point that we can understand almost everything he says. And as far as my son goes, I have no neurologic or behavioral
evidence left in him to suggest that mercury is still a significant problem for him - he is talking,
answering questions, carrying on conversations. His strabismus is gone. His bilateral Babinski sign are now gone. He no longer walks on his toes. I could go on and on, but the bottom line is that I used DMSA every 8 hours, 3 days "on" and 11 days "off" and he is not the same horribly impaired child that he was even a year ago.
I intend to continue chelation until no more mercury comes out on provocative urine toxic metal screen. Hope this helps,
Dr. Amy Holmes

Edited by author 08-05-2007 05:48 AM
Re /m6508 , poor kid. Stephanie Cave? I hope the DMSA and the rest of the DAN! repertoire didn't harm him too much. But which version of reality are we supposed to believe?

Dr Holmes writes about Mike in the year 2000:

"Today (5/00), he speaks in sentences, addresses people by name to get their attention, and no longer "stims" non-stop. His receptive language is excellent, expressive is still 2 years behind his peers (but is catching up fast). His pronunciation, which had been so bad as to make any words completely unintelligible, is now improving to the point that we can understand almost everything he says."

And:

"he is talking, answering questions, carrying on conversations"

Cut to 2007, when Mike describes himself as unable to talk http://www.2theadvocate.com/features/8903962.html?showAll=y&c=y, and:

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

"We are moving because there is a lady named Soma who can teach me how to ‘talk’ to other people using a letterboard,” he begins his letter.

“I will never be able to talk like you do, but I can spell out words using a letterboard,” he writes.

Actually, Mike was using the letterboard to write the note to the church — pointing to each letter while his mother wrote them down.

“He says each letter so it’s easy to follow. He can say the letter, not the word,” Holmes said.

It took them about four sessions to complete the 240-word letter.

“It’s all his,” Holmes said.

She describes the letter board as a “placemat with capital letters in alphabetical order on one side and numbers on the flip side.”

The process is “somewhat tedious” now, Holmes said, but eventually Mike will graduate to writing the words himself and then typing them.

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

I wonder what happened to the ABA program. And it looks like chelation etc. was so successful that, according to Dr Holmes in 2007, Mike was "in special education classes for seven years essentially doing first-grade work".

Okay, I don't believe a word she says. Her kid is still cool though. At the end of the article, there's a bit of what Mike writes to the people at the church he attended, which includes:

"Thank you for accepting me the way I am."

Bad reporting about the Raven paper http://autism.about.com/b/a/257904.htm on which I commented (twice by accident, and of course Mr Doherty showed up). It's impressive in that the author (Lisa Jo Rudy) so blatantly didn't look at her own information, and also does not understand--even at a very basic level--how research works. Regardless, she is running this sort of "expert" autism website, on which she regularly comments--with authority and certainty--on the science.

Come to think of it (*ping*) Ms Rudy was the one who uncritically posted information about intake IQ in Lovaas (1987), information snapped up by Mr Doherty, and which gave me a wonderful excuse to emit a lot of data ( http://autismcrisis.blogspot.com/2007/03/i...in-lovaas-1987.html ).

In the "wow!" dept, not only does Alex Bain set a personal best, lightning strikes in his back yard, zapping a hay bale (there are photos!) Am I envious or what? See http://therunman.blogspot.com/2007/08/moun...-personal-best.html

Thought you'd like that Michelle. Added another picture, the burning bale as seen from the house this morning. We face pretty much directly south so the pic with the house in the background is looking almost directly north.

Today I go to Autscape: http://www.autscape.org. I am very much looking forward to it.

Edited by author 08-07-2007 06:32 AM
I wish I could go to Autscape too. Hope you have a great time, Philip.

Here's a Guardian article http://society.guardian.co.uk/health/story/0,,2143123,00.html which was inspired by Autscape. The journalist harps on presumed autistic social deficits (you've been warned...), and the article starts badly, with Aspies For Freedom claiming to be world leaders (or something like that).

But Larry Arnold provides a different perspective--which, in this case, I agree with. Then there's a bit about Amanda Baggs (there's no indication that she was interviewed), and Jim Sinclair, Mike S., and Kev Leitch also appear and are great, which helps to balance things out.

Then it all ends with Prof Baron-Cohen making his usual pitch, including that we all have to be trained to recognize emotions (never mind all the published evidence that we can recognize emotions--by which SBC really means facial affect--when asked to), maybe using the program he's got out there?

Autism Diva writes about Dr Amy Holmes and her brilliant autistic son Mike http://autismdiva.blogspot.com/2007/08/dr-...nd-mikes-story.html Thanks Autism Diva!

Also see "Autistic friendship in action" http://autismdiva.blogspot.com/2007/08/aut...ship-in-action.html which makes me want to throw my computer across the room because I really, really want to see that video and it's going to take all morning to get it to download (if I'm lucky).

Kev Leitch http://www.kevinleitch.co.uk/wp/?p=604 and Mike S http://mikestanton.wordpress.com/2007/08/0...t-is-a-way-of-life/ put their 2 cents in re the Guardian's Autscape-inspired article in which they both appear.

Hi Michelle,

Thanks for the link to the Autscape-inspired article in the Guardian.