Edited by author 03-07-2006 04:37 AM
The High Court in London is hearing a request by doctors for permission to turn off the ventilator keeping a 17-month-old boy alive. See http://society.guardian.co.uk/health/story/0,,1725056,00.html.

The boy is aware of his surroundings and can see and hear. His parents oppose the doctors' request and say that he responds to them. He has spinal muscular atrophy. His mother wants him to have a trachetomy - the insertion of a tube in his throat to allow air to be pumped into his lungs.

If the boy's ventilator is turned off that would be murder.

hi all
(another catch-up after whizzing around with Wendy)
Thank you Michelle for that link to Dr Gernsbacher's presentation re reciprocity (which I tend to refer to as community of interest, following the child's interest being a key idea) - great stuff and beautifully supported from the research; I will look at her other presentations; I wish I'd found this site before.

The main catch up is from a couple of weeks ago when your research status, (lack of) pay etc were discussed Michelle. I find I go on being bothered by the knowledge that not only are you not paid, you are not even receiving the support which you have been assessed to need - nor indeed any support at-all?? Are your colleagues aware of this?

fyi the autism and representation colloquium in February had several thoughtful papers revolving round themes like the history of exclusion, demonisation, etc. Interesting to hear people from the Arts side, who seemed unanimously sceptical about the autism image promoted in the media

After seeing Kathleen Seidel's investigation of the "hidden hordes" (that means us) http://neurodiversity.com/weblog/article/88/hidden-horde as well as this http://ballastexistenz.blogspot.com/2006/0...we-appeared-in.html piece of research from Ballastexistenz, I was looking around for another blog post I ran into by accident some time ago.

I finally found it, or a repeat of it, here http://scienceblogs.com/pharyngula/2006/01...rence_due_those.php "The proper reverence due those who have gone before".

Mostly I thought reading through Kathleen's excellent post about all the autistic lives, present and past, denied and erased by those bent on marketing an autism "epidemic".

PZ Myers at Pharyngula tackles an apparently different kind of irreverence for human life, but the same logic is at work. The promotion of an ideology wipes out a multitude of human lives. The existence of great numbers of people who very much existed is denied. You didn't exist, you weren't even here.

This is a sort of annihilation, whether human lives in general or autistic lives specifically are being denied.

Quick response...

First, re "Son-Rise", see Claire Sainsbury's highly recommended article http://members.tripod.com/RSaffran/sonrise.html . She takes on everything from the hard sell to the requisite false/pejorative descriptions of autism to the locked room and so on (there is a lot to take on).

Chantal, I haven't read Mr Buten's book and am unlikely to. I did hear him on the radio a few years ago and could not really stand him (all I remembered was a clown who worked with autistic children; I've checked now and this was in fact Mr Buten) or the uncritical way he was deferred to.

Imitation is tremendously important for non-autistics. Non-autistics effortlessly and automatically (there is a lot of science) imitate each other more or less from birth. But non-autistics (I'm exceeding the science, because no one has been interested in this) do not imitate autistics unless doing so effortfully for whatever reason. There is science showing that non-autistics don't respond to autistics either (like the study I described briefly, Keen, 2005). You have to imagine living in a world where people are not responsive to you at all.

A good exploration of this is Dr Gernsbacher's presentation about reciprocity (go here http://psych.wisc.edu/lang/MGcover.html , click on "presentations" then on "videos" then on "reciprocity"). I'm guessing (and could totally be wrong) that imitation can be more "effective" than responding to communication in autism because non-autistics are just generally bad at responding to autistics; imitation is somewhat easier.

A lot of imitation could be really intrusive though, versus responsive. My view is that imitation should involve the idea of playing or acting alongside someone (e.g., because you are interested in figuring out what is interesting to him--you might even want to learn from him), versus intrusively in-your-face aping him. I also think that being reponsive (which might include some pieces of imitation) is the important part, e.g., noticing what an autistic is interested in or is learning from and responding by providing opportunities and materials which show you have noticed and are sharing and encouraging interests and learning. There has been only sparse interest on the part of the autism research community in how non-autistics respond (or not) to autistics and the consequences of this.

I don't use the word "stim" because it's based on false notions (see Dr Lovaas and many other behaviour analysts) about what we do and why we do this.

Dear All, I have been "eavesdropping" on this forum for quite awhile. It's quite interesting. I am one of those who also has been diagnosed with an Autism/AS-related disorder, so I can really relate to what people have been saying here.I'm now 44, older than the typical "target" audience for treatments, etc. Re Michelle Dawson, THANK GOD there's somebody who doesn't romanticize Autism/AS, or negativize,"awfulize" it--the way so many "experts" seem to do.At least she can tell what it feels like "from the inside", as it were.

Re the subject of "imitating" the child's behaviors to initiate communication, check out the book "Son Rise"--I think that's what it's called, by one Mr.Kaufmann, who has written other books, as well. (can't remember his first name, but his son's name is Raun). He and his wife(I think this was twenty-some years ago), instead of trying to stop their son's "unusual" behaviors, mirrored them--they spun plates with him,they made animal sounds with him, they joined him in "his" world, etc. The son is grown now and is a college graduate,I believe. I don't remember the details of the book, since it's been a few years since I read it. I don't remember anything traumatizing in it, no "guerilla tactics". I think this was at a time when everybody else was doing behavior mod., Lovaas method, etc.)
Are there other discussion board at QT site on the subject of Autism/AS,etc.?

Good morning Amanda,

Re 3588, I wish I'd read your post before purchasing that same book (Through the Glass Wall) this weekend. I attracted me because of the author's description on the jacket of being able to communicate with autistic people by imitating them. I was intrigued in reading this "professional opinion" because I have to say that when my son was very young and we were having trouble understanding each other, I did try imitating him quite a bit to see what would happen and I must say he enjoyed it. It helped us forge a bond. However, I was often disturbed while reading this book. The tone was very condescending and the descriptions of aversive techniques and their "results" made me very uncomfortable. I never got the impression that the author really considered the patients to be human. I still haven't finished it, and I guess I should have before giving my opinion of this book, but honestly...

Anybody else read this book? What is your opinion regarding imitating autistic people's stims to "initiate communication"? I'm using quotes because I fully agree with one of Michelle's posts on this page in which she writes that autistic children do try to communicate with their parents all the time, it's just that sometimes you're not listening.....

Chantal.

ABA autism therapy would be a great subject for a creepy video, too. I think the therapist should have Nurse Ratched-style hair - you know, with horns. Only she wouldn't look like Nurse Ratched because she would have "the smile."

It's so weird. Thanks Ralph for putting that together.

I missed the point of it flapping. That's hysterical.

The part that is missing is where you have a normal baby and these evil white coated monsters come and rip him from his mother's arms and inject him with a vaccine. Then he disappears into the bag thing and struggles and makes those struggling noises. Then the mom rubs TD DMPS cream on the bag and gives him MeB12 shots, then he breaks free and then he should say something hateful about the people that did it to him... and maybe how much he loves David Kirby and Boyd Haley.

But why does he turn into an animal? Shouldn't he lose his wings and run off arm in arm with peers and play with them on a playground? All bright and shiny and happily ever after... they started with "once upon a time"... it should end with happily ever after. Not a flapping animal escaping human company.

I think the point is to make people worry about "its" future. They need the lawyers to be able to say, "well, we chelated him and now he can talk, but he's scarred for life". They have this thing of trying to balance the idea of "hope" vs. "helpless desperation".

I wonder what average people not sucked into the EoHarm world think of that PSA? It's so weird.

I was going to post that comment here from Gilmore about how "we have to scare all the parents". It's a classic and fits in with the discussion.

all that flapping at the end...

maybe in the followup there'll be one of those big blue bug zappers to cure him of the flapping stim....

Edited by author 03-05-2006 10:51 PM
I'll play stand-in for Camille [280k]:
http://www.sentex.net/~nexus23/mov001.gif

The two opening lines are both text and audio. In the closeup he says, "I thought I'd never escape."

I've just managed to see it, though how I can see anything while imprisoned in the darkness and hopelessness of autism is a mystery. I'm not sure about the plot though. I mean, all that flapping at the end...

re http://www.nationalautismassociation.org/NAA_PSA.mov

Oh wow....

Cure autism now, or your kid will turn into a butterfly.

I wonder if the name of Amanda's blog was simply prescient.

Edited by author 03-05-2006 09:46 PM
Thanks Camille. Those vaccine/autism people sure know how to scare people. I haven't posted a message from EoHarm here before, but here goes. This one http://groups.yahoo.com/group/EOHarm/message/21998 is from John Gilmore, a Big Cheese in some vaccine/autism lobby group:

"This is good. Hopefully, if NBC keeps this up it will start scaring
parents of healthy kids. It is in our interest to scare the heck out
of every parent that there kid could get autism. When that happens we
will see real research, real concern and real results. That is exactly
what happened with AIDS. Once every sexually active adult in AMerica
started wondering whether they could get AIDS is when the gates of
heaven and the US treasury opened up for AIDS research. Right now for
every dollar spent on autism I calculate about 1400 are spent on AIDS
research by the federal government."

In this case, there's no doubt whose interests are being served. "It is in our interest...". If only autistics become scary enough, if only enough people are absolutely terrified of us, if only we are known as the horrifying, uh, things we are, then all the money will pour in and justice will be served and the world will be free of autistic people ever after.

From the BBC, "Media 'sensationalising science'"
http://news.bbc.co.uk/1/hi/sci/tech/4771154.stm
The MMR scare is used as an example and the "think-tank"/"independent research group" Social Market Foundation recommends (amongst other things), "Universities should offer multidisciplinary science degrees which include issues of ethics"...there's that E word again.

There's a child sized chrysalis kind of brown bark-like bag hanging a few feet off the ground in as studio sort of setting with a big sort of plant indicated. The scene is all black and brown (no kidding, dark and scary) there's this awful
"ugh, oomph, ugh" sort of sound like a child whose been gagged or something and it looks like someone might be inside the bag shaped chrysalis thing. Then a foot appears through part of the bag and then it goes back in the bag, then the child falls out of the bag through a hole that apparently gets torn in the bottom of the bag. Its a boy. He stands up and walks ballerina like two or three steps away from the bag thing which remains there. The he sort of suddenly moves his arms to the side a bit and there are golden brown moth wings between his arms and his body, then he sweeps his arms upward to show a full set of wings...

The wings look like the death head moth/butterfly thing from that horror movie. Maybe that's my imagination, but it's one of those moth things with the big eyes on the top of the wings.

Then he sort of jumps forward with his arms swung back and he gets morphed into a giant gold moth with just a moth body (no child). and the moth swoops to the left then back to the right and disappears. Fade to a message of horror on a gold background.

I can send you still of it later. I have to run now. Oh, the boy says something, I can't remember, but he's like straight faced and un-childlike. I'm not sure if he's sad or what. He's not happy.

I think what is missing is where the mom comes in with a doctor and hooks the chrysalis up to a bag of disodium EDTA.

I (of course) can't get this http://www.nationalautismassociation.org/NAA_PSA.mov to download...

Edited by author 03-05-2006 06:36 PM
Re /m3597 seems it's mostly computer generated (all except the boy) by folks who promise a "chapagne product" on a "beer budget"; see their site (or not): http://www.dv3productions.com/ [Flash]