On Monday 27 August 2007 21:32:56 QT - Michelle Dawson wrote:

> Forgot to add re the absolute pitch study ( /m6597 ), there's a
> related website http://perfectpitch.ucsf.edu/ where you can take
> the test used in the study (see background info here
> http://perfectpitch.ucsf.edu/ppstudy.html , and there's a short
> linked interview with Dr Gitschier here
> http://www.hhmi.org/bulletin/sept2001/perfectpitch/perfectpitch2
> .html ).

Oh. That's the stuff I participated in, and also corresponded with them a bit about my unusual reaction to Tegretol. (Or supposedly unusual. They told me that they had indeed heard of Tegretol messing with absolute pitch before. It was prescribed to me at age 13 and I almost immediately started refusing it because the entire world had gone off-key.) Their test did show me to have absolute pitch and I think I answered a bunch of questions after that.

Somewhere I read that autistics can (or do) also have perfect timbre. The example I remember reading was about someone being able to identify particular lawn mower engines or car engines or something by the sound.

I don't know if I have perfect timbre (probably not) but I seem to be able to notice different kinds of noises better than others, or they just don't comment on noticing those differences.

Thanks Michelle for the link to the information about the DVD you made.

On BBC Radio 4 tomorrow night at 8pm in the programme 'Inside the Ethics Committee' a panel of experts discuss the ethics involved in a real hospital case.

From the description of the programme: David, who has severe learning difficulties, has been diagnosed with a treatable form of stomach cancer. His treatment would involve regular intravenous chemotherapy and sedation in hospital. He finds all hospital procedures extremely distressing and doesn't have spoken language. Can he give informed consent to treatment?

Article in The Times yesterday: "Hunting the gene that traps children in their own world". See http://www.timesonline.co.uk/tol/news/uk/s.../article2332336.ece.

It reports that "Within the next year a new study is expected to idetify many of the genes that underlie autism for the first time."

Larry Arnold and an autistic woman have commented on the article.

It's official, Canada has its third Behavior Analyst Certification Board-accredited university, see http://www.newswire.ca/en/releases/archive...t2007/28/c2647.html

I haven't looked at the Brock University BCBA coursework yet, but you can see that in our era of "autism advocacy", "disability studies" in Canadian universities means being trained in ABA-based interventions. See Autism (Society) Ontario applaud--in no time, all autistics will emit appropriate behaviours.

The other two Canadian BACB-approved universities are the U of Manitoba and UBC.

Edited by author 08-28-2007 10:20 PM
In the Times article ( /m6603 ), Dame Stephanie Shirley of Autism Speaks says, "The medics tell me we are at a tipping point" for nailing down those cruel, feared, child-destroying (etc.) autism genes.

It was in February, 2004 (what, three and a half years ago), that Thomas Insel of the NIMH (and is he going to be on the National Autism Association board too?) said about autism in the NYT (see http://query.nytimes.com/gst/fullpage.html...pon=&pagewanted=all ):

"My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute."

Anyone tipping over yet?

Further to /m6602, here is more information about tonight's BBC radio programme: http://www.bbc.co.uk/radio4/science/ethicscommittee.shtml.

Re: /m6591 This is quite a group: http://www.autism.org/

I didn't realize Schafer had his own logo.

Anyone hear of Le Packing before? Seems off the wall to me.

http://www.autismvox.com/send-le-packing-packing/

Edited by author 08-29-2007 08:21 PM
Re /m6607 , you can get the original Lancet article about "packing" from this page http://www.thelancet.com/journals/lancet/s...-7§ion=World+Report if you're registered with the Lancet (it's free to register).

No, I'd never heard of "packing" before (nor had Patricia Howlin, who is mentioned in the Lancet). Poor kids.

See how consent issues in "packing" are addressed exactly the same way all consent issues in autism treatment are addressed. From the Lancet article (Pierre Delion pioneered "packing" but sadly is not its only proponent):

"She [Mireille Lemahieu, Autism France's president] also points out that children who cannot speak—which accounts for most of the recipients of packing—cannot withhold their consent for a procedure that they do not enjoy. For Delion, this is not an issue, “If a child is in a road accident”, he says, “you do not wait to ask his consent to give him a blood transfusion”. He believes it a case of doing what is best for the child in a situation in which the child cannot help himself, and he emphasises that parents’ consent is always sought."

And who else is interested in "packing" as an autism treatment?

"Delion recently gave a course on the technique at the Tavistock Clinic in London, which is part of the UK’s National Health Service. Maria Rhode, a psychotherapist at the clinic, points out that there are currently no effective treatments for autism, and that caring for such children presents a major, long-term challenge to health services."

Sure, when you toss scientific and ethical standards out the window when it comes to one particular group, this group is going to have lousy outcomes. And then everyone can complain about what a drain on society they are. But--setting that aside--the Tavistock clinic is home to the important autism research guy and psychoanalyst, Prof Peter Hobson. I thought Prof Hobson had pinned his hopes on RDI--which is based on Dr Hobson's view of all autistic lives as utterly impoverished and miserable. But maybe some Tavistock-clinic-approved "packing" on the side?

Here's Prof Hobson on the Tavistock Clinic website http://www.tavi-port.org/contact/tavistock-clinic/medical.html where he gets his full title:

Professor Peter Hobson
MA, PhD, MB BChir, FRCPsych, CPsychol, MInstPsychoanal, Professor of Developmental Psychopathology, Tavistock Clinic and University College London, Honorary Consultant Psychiatrist in Psychotherapy, Tavistock Clinic

Edited by author 08-30-2007 05:31 AM
Here my notes from "Inside the Ethics Committee" which I heard last night. There is a listen again facility for the programme here: http://www.bbc.co.uk/radio4/science/ethicscommittee.shtml.

David has severe learning disabities. He has no family and lives in a residential care home.

He developed lymphoma of the stomach and was given a CT scan under sedation. He woke during the scan which made him very distressed and his carers were distressed for him. Chemotherapy for his stomach lymphoma was indicated but it would have a sucess rate of a little under 50%.

The panel discussed the capacity for people with learning disabilities to make decisions. Because a person makes what others may consider to be a perverse decision, it doesn't mean that the person did not understand the decision. The Mental Capacity Act 2005 does not assume that people with learning disabilities are unable to decide for themselves.

They discussed what is meant by best interests. In this case his doctor, with consultation with his carers, would decide what is in David's best interest. It is broader than medical interest.

Discussion of quality of life in relation to learning disabled people. One of the panel, Dr. Deborah Bowman, said that it is impossible to judge a person's quality of life. She said that learning disabled people are discriminated against and receive a lower standard of treatment. This is not usually out of malice but because of communication difficulties. Discrimination is probably dressed up as medical reasons.

The presenter asked the panel their decision if they were actually making it in real life. Dr. Bowman and Dr. John Robertson said that based on what David's carers said, chemotherapy treatment should not be proceeded with. His carers said that David is unable to understand the treatment and it would cause him unnecessary distress. Professor Tony Holland disagreed with the other two panellists and said that treatment should proceed. David should not have woken from sedation when receiving a CT scan.

The actual decision was that David was given palliative treatment to relieve the symptoms of his stomach lymphoma, but not chemotherapy. He died five months later.

So it seems that the staff at David's residential care home played a major part in the decision regarding his treatment.

Michelle
Thanks for the info re the Times article and the Lancet. I have blogged them both.

Busy yesterday and today and maybe the day after (Saturday), but have taken the necessary time (oh, 'bout 45 minutes) to download this 50-second video http://www.youtube.com/watch?v=YC_MY9vMV0U It's made by a mainstream autism organization/society in Slovenia which (setting aside the puzzle pieces) seems to be a light year or so ahead of Autism Speaks when it comes to making "autism awareness" videos.

Will be back to catch up when I can.

Great video, but too short.

Edited by author 08-31-2007 11:43 AM
In his book 'The Silent Child: Exploring the World of Children Who Do Not Speak', Laurent Danon-Boileau gives case studies of five young children and one adolescent who did not have communicative speech. See http://www.oup.com/uk/catalogue/?ci=9780199214044. The author is Professor of General Linguistics at the University of Paris and a professional language therapist.

Professor Danon-Boileau does not use language, texts, pictures or songs in his work with children. Instead he sits beside the child who plays with toys: "sitting side by side allows us to be directly aware of shared thoughts without needing to decode the signs that usually indicate what one is thinking." If you are seated facing the child then it is necessary to point to draw attention to something. The child must therefore interpret the meaning of the pointing figure, which is not self-evident. He aims to establish "a dialogue without words. This is because, before setting children on a path towards language, they must be given the feeling that they can be understood, even without words."

One of the children he describes is Rachid who was nearly four years old, when they first met. Rachid "did not use language to communicate. He could, however, read numbers consisting of several digits and count objects up to twelve, as well as write some letters of the alphabet. When alone, he would move his fingers about in endless intricate patterns, sometimes chanting to himself in strings of incomprehensible words. [...] Autistic? I would not say so, although he displayed signs that are sometimes associated with autism, such as this finger gestures, there was some interchange. One could share things with Rachid that would have been impossible to share with an autistic child, even if the interchange was fragile and sometimes broke off." However the description of this book on the OUP website states that the children described have conditions ranging from autism to aphasia.

After his descriptions of the children, the author considers the nature of language. He asks what is good language. It is "first of all a language in which, for all its imperfections, the speaker feels at home. [...] Secondly, good language is language that enables someone else 'to see things'. To paraphrase Arthur Rimbaud's, 'The poet is not one who sees, but one who makes others see', 'it is not the language of one who sees but a language that enables the other person to see'."

He discusses speach and points out that "not all children begin to speak. Some autistic children, for example, never speak." However "speech is not an end in itself. Speech is a necessary but not a sufficient condition of psychological health, and to me, as an analyst, it is psychological health that matters." He is wrong. There are psychologically healthy people who do not speak. Because "language is part of the symbolic functioning of human beings, all speech therapy can be seen to be in part psychotherapy."

He asks "why speak at all?" There are currently two answers to this question, neither of which he finds satisfactory. "The first says that we speak to get what we want; the other, that we speak to construct some sort of picture, a phonetic copy of reality." He concludes that the "function of language is to express the invisible by starting from what is visible to all parties."

thanks for the Youtube link to Autism, We are born this way - beautiful piece of work. For some, maddening, reason although I have instructed Youtube to put it into the Posautive group about a dozen times (twice more since I got up this morning, even before looking at my emails, it really is driving me nuts). It went ok into the Posautive/sense subgroup so it is a complete mystery.

Autism Diva http://autismdiva.blogspot.com/2007/08/the...-that-way-sigh.html brandishes another short (meaning, short enough for me to watch it) video, "Neurotypicalism Every Day". Only took me ~70 minutes to download. If you go over to where this video is on YouTube http://www.youtube.com/watch?v=Bxx5EmCRxYY...2Dway%2Dsigh%2Ehtml (I somehow doubt that URL will work), you can find this comment from Autism Diva:

"This is SHOCKING! I have a mildly neurotypicalistic child. The parents who deal with full blown neurotypicalism are SO brave. They need our love...and support, and a hug and a bagel!!! But the big question is, IS THERE A CURE!!!!????? Where can I send a check to stop this nightmare...now! :-) Not really, some of my best friends are NT."

There's one rather interesting letter in response to the Newsweek article a while back about IQ and autism. You can find it here http://www.msnbc.msn.com/id/20546325/site/newsweek/ and here it is, providing yet another lesson in why epidemiological and demographic information about autism should never be determined on the basis of who receives services (educational or otherwise):

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The IQ of Children With Autism

I wanted to thank you for "the Puzzle of Hidden Ability" (Aug. 27), about the IQ of autistic children. My child was found to have a very low IQ. At the time he was tested, I was told that he must have scored so low because of his inability to connect with the instructor and that he was selectively nonverbal. I have wanted to get him tested again because he has become more verbal and has better social interactions, but just as your article stated, he may not get some of the services that he currently receives if his IQ falls in the "normal" range. As parents, we fight to get our children what they need to be successful and healthy. I cannot justify having services taken away that I struggled to get.

Diane Lane
Grasonville, Md.

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