Edited by author 03-07-2006 06:28 AM
Irene Rose, the organiser of the conference on autism and representation, was interviewed on BBC radio on 16th February 2006. See http://www.bbc.co.uk/radio4/womanshour/04/2006_07_thu.shtml.

Edited by author 03-07-2006 12:08 PM
Re .m3597
That video is horrible. I can hardly believe the way autistic people and their lives are routinely described. When I first found out about my son’s autism I spent ages reading stuff on the web. Often it was aimed at or written by parents and it scared the blazes out of me. It was always very negative and focused on how awful our lives would be now that ‘my son’s souls had been stolen’ and that type of stuff. I don’t think anything was as creepy as that video though.

Here’s another horror which you may have seen already.

http://www.tacanow.com/VIDEO.htm

Life is too short to spend downloading and watching this stuff (about 4 minutes wasted), so I wrote out what is written on the slides.
1) Autism the silent epidemic
2) Autism is stealing the minds and souls of a generation of children
3) In 1970 there were 1/10 000 autistics
4) Now it’s 1/166
5) 1.5 million autistic people in USA
6) 4/5 are boys
7) Sometimes there’s more than one in the same family
8) Autism doesn’t shorten the child’s life span
9) Many autistics require life long care
10) At a cost of $4-5 million each
11) The numbers of autistic people are rising
12) So give us your money
13) Tragically some children develop normally until their 2nd year
14) Then autism strikes
15) Then follow some photos of Griffen, Noah, Cory, Taylor and Michael looking all cute and normal 'before', with photos of all these kids looking ‘spaced out’ and ‘lost’ 'after'
16) Please help before autism strikes someone you love
17) Oh then there’s 'before', 'after' and 'recovered' (?!) pictures of Joseph

I meant to thank you Michelle for a long message you wrote on the Autism Science Forum about implicit learning.
http://www.kevinleitch.co.uk/forum/viewtopic.php?pid=590#p590
It helped me to make the final decision that my son would be better off learning at home with his siblings and me.

Re /m3611
I watched a UK TV show last year about a family who were starting the son rise program with their autistic son. It showed a talk the parents attended given by one of the Kaufmanns and it was so manipulative and cult like. Everything seemed designed to get as many parents crying as possible.
They showed a bit of someone doing the son rise therapy with the little boy, and it was very uncomfortable viewing. The boy appeared overwhelmed and frightened. It ended with the apparent ‘miracle’ of the boy saying hello to his mum.
This stuff always annoys me. My son started to say hello to me one day, before that he said his 1st word (train….who’d have guessed!) another day he plays with his brother, laughing and joking and talking in longer sentences. It all just happened as he got older.
My favourite article about autism therapies is Amanda’s
http://www.autistics.us/library/autexpert.html
All parents should read that one.

Hi Michelle,

Thanks very much for your response. It was very helpful.

I mentioned earlier that I noticed when Christian was younger and "non-verbal", that while he didn't seem to understand what we were saying, he seemed very patient to try to reach us in his own way. I felt that by imitating him a bit (and also giving him some space - I think the "in your face" methods are too aggressive and frankly rude), I was doing my part in understanding him and setting up a form of communication. It's supposed to be a 2-way street after all.

I hope I didn't offend anyone by using the term "stim". The word crops up so often, and I don't know any other. No offense meant.

Christian is having alot of fun talking right now. He has also developped an huge love of marine animals. He'll have them all lined up on the tub's rim at bathtime and he loves to imitate whale and dolphin noises. The other day the killer whale had an altercation with the lobster. Lobster was pouring water on the whale's head and whale was NOT amused! He would change his voice to a deeper tone for the whale, and the lobster had a playful, child's voice. I wonder if he is sort of imitating his life through his animals, like I'm the whale and he's the playful little lobster...He was certainly watching me out of the corner of his eye to make sure I was paying attention (I was rolling on the floor laughing hard. It was so cute!)

I finished reading the book (which, thankfully, is not very long) and have to agree with you. The guy is really annoying.

Anyways, thanks alot!

Chantal.

Hi Salpurdy,

Thanks for your kind suggestion and welcome.

I think it's nice that anyone can come here and ask for suggestions and also read up on real science. It's a very good group.

Have a great day.

Chantal.

Edited by author 03-08-2006 04:41 AM
Further to /m3615 here is a news story in The Independent about the case - http://news.independent.co.uk/uk/this_britain/article349748.ece.

One of the boy's doctors said that his patient has an "intolerable life." Another of his doctors said that, for him, the worst possible scenario would be if his patient had normal cognitive function.

Hi Philip,

Re 3621, that is truly a horrible story, and it's scary to think of what could happen around the world if the doctors win their case. That is alot of power that could be put into their hands.

I agree with you that stopping ventilation would be murder.

Thank you for keeping us posted. I'm sending the link on to other people I know.

Chantal.

Edited by author 03-08-2006 08:32 AM
Catching up...

Chantal, I don't think many people find "stim" offensive. That's my own peculiarity, and it isn't that I find it offensive, I just don't use it myself. I don't use "neurotypical" or "NT" either ("NT" of course means Newfoundland Time...), but a lot of autistics do.

There's a radio program I heard--Quirks and Quarks on CBC radio, sorry no time to look it up--about early early autism interventions, and Wendy Roberts (who's at Sick Kids in Toronto) said, more than once, "You have to get right into their faces", re how to fix autistic kids, apart from saying that these very early autism interventions were so loud she could hear them through the walls of the hospital. What she didn't say is that we have no idea what the outcomes of these interventions are. No one asked her how it is that she just knows that the way autistics develop, learn, etc, is wrong.

Mary, I've actually seen that video (the TACA video). I can't remember when it went up, but I looked at it, gagging all the way. TACA is also home to the infamous "Dead Time" article http://www.tacanow.com/outsidetherapy.htm . Brace yourself. It starts with "Dead time is time OUTSIDE the ABA therapy sessions." And gets worse.

The Kaufmans and their Option Institute don't just market promises to fix pathetic (their view) autistic kids. They also market happiness. "The Institute actually promised to make its clients happy for a fee of $1275.00." See http://car.owu.edu/Vol.%2012%20No.%202.htm Who could say no...

I hope Duncan does great at home. I really wish there were a lot more research into autistic learning (I don't know about anyone else, but I'm fascinated...). The good thing is that the way autistics learn is what researchers call "robust"--well, okay, I'm not quite respecting its typical definition, but it's a way of saying that autistic learning sometimes shows up regardless of the best efforts of researchers to ignore or destroy it.

This happens with autistic abilities in general. Researchers grit their teeth and come up with experimental protocols they are sure will result in lousy performance by autistics. And then autistics circumvent this and do well anyway. And then the autistic researcher (me) brays with inelegant glee. This doesn't happen all the time but it happens.

I still get a kick out of knowing that a bunch of very big deal researchers in two different research groups were totally defeated by their failure to consider that autistics learn differently. This sank an experiment (leaving an interesting gap in the science). The researchers shrugged it off (who cares about autistic learning?) and resumed desperately seeking that elusive "core" social deficit... (oh, and they say that we can't learn).

Dinah, I'm glad the representation conference went well. Where are these people who see through the autism plague- and scare-mongers? We could use a few of them over here. Did you spot any Canadians? I can't find a list of who presented what.

Re my situation, it should be some kind of emblem of the extent of my difficulties in dealing with all kinds of situations. Only part of this arises directly from being autistic; it mostly arises from the extent and variety of my more horrible experiences and their fall-out, and the general situation of autistics in a place where we are considered a plague. The extreme precariousness of my situation is probably not something anyone wants to think about, me included. While I can, I want to get a lot of work done.

Hi Philip, I agree with Chantal ( /m3622 ) and also thank you for informing us. I don't know what to think about the discussion surrounding this very alive little boy. But I do know that there is one area where any scientist or clinician needs extreme humility, and that is in assessing which lives are worth living. They have so often been wrong. They have not learned from this.

I agree with Dick Sobsey's position about euthanasia, which is that we are not smart enough to do this. We will make many kinds of errors, and those errors will remove the lives of people who do not want to die.

Edited by author 03-08-2006 08:56 AM
Rick Rollens rolls out his social skills again http://autismdiva.blogspot.com/2006/03/sou...g-rick-rollens.html

I've actually been in the same place as Mr Rollens twice. At IMFAR in 2004 and 2005 he was listed among the attendees, and so was I. Why didn't he spot the train wreck? Didn't he notice the carnage, the emergency vehicles, the the medics, the stretchers, the flashing lights, the sirens? How on earth could he have missed it. Twice.

On Wednesday 08 March 2006 04:29, QT - Philip wrote:

> Further to /m3615 here is a news story in The Independent about
> the case -
> http://news.independent.co.uk/uk/this_britain/article?349748.ece
> . One of the expert witnesses said that the boy whose life is
> being decided has an "intolerable existence."

Oh good grief.

I've read the writing of several people with SMA. All have been adamant about their right to be alive even when other people don't think they should be. One was adamant about not volunteering her and her sister's genes to genetic research when a doctor tried to sneak a genetic test past her, because she didn't want people like her prevented from being born based on DNA she'd contributed. Another is very outspoken against the assumption of "better dead than disabled". Etc.

Re: The Autism Cure Fantasy Video

wow is right-holy moly.... Ralph wrote: "Cure autism now, or your kid will turn into a butterfly"

LOL! What a farce!

Re: Stimming

Did I mention before that most 'NT' types I know do, in fact, stim? My wife stims, my best friend stims, my boss stims...just that nobody calls it a stim when my friend rocks back and forth or when my wife is kicking her legs 'to soothe herself'

Re: 'NT' Newfoundland Time or Neurotypical
Lol again! You could make a newfie joke out of this if you wanted to...

Hi Mike!

You had me rolling around on the floor regarding "Newfoundland Time" - must be the meds. I've got strep throat and a double ear infection, which means everyone sounds either like a leprachaun or like they've been sucking on helium when they talk. It's driving me a little nuts...Take goodness for Neo Citran.

I'm a Newfoundland-Timer (hee hee), but I "stim" all the time. I've constantly got the "jimmy-leg" and when I was a child, I loved to bounce my head on the sofa. I broke 2 couches! I still get the urge now, except that I paid for that couch and I don't want to spend more money on that right now! Amazing was can get "cured" when your pocket book is involved!!

Thanks for the humour. I need it right now.

Chantal.

I know we're not on the topic on dancing right now, but I've just received a link to a video clip of a famous Middle-Eastern dancer called Fifi Abdo. She's very graceful and fun. Thought you might enjoy it...

http://www.orientalys.com/video.php?v=fifi2.asf

I'm performing at a charity event for cancer research on March 18th. Wish me luck!

Ciao!

Chantal.

Hi Michelle,

Re 3625, I object to anyone calling an autistic person a train wreck or a plague rat. Those are hateful, disgusting terms. I wanted to post those on Autism Diva's blog, but can't seem to figure out how to register myself...

BTW Autism Diva, cool site.

Another comment on the site disturbed me as well. One father of an autistic child was angry because his child was denied Communion due to his "behaviour". Has anyone else been through this? I am Catholic, though not very practicing. However, lately I've been wanting to return to the fold, though not if my son won't accepted just the way he is...

Chantal.

Michelle,

what do you use (if anything) instead of "NT"? I use it sometimes but I'm more prone to saying "regular folks".