Edited by author 07-27-2005 05:19 PM
Hi Michelle,

I am so happy to be at Autscape and I am having a great autistic time here.

Jim Sinclair gave a brilliant talk on being autistic in NT space, in one's own space, and in autistic space.

I had hours of fun on the computer this afternoon with the Reactive Colours program.

Dinah brought along her copy of the DVD of the video of you speaking on "Autism in Society, Law and Science", which I saw when it was screened twice this evening. I hope that history will give the true verdict on autistic people and the prevalent attitude towards them in Canada.

I wiil post about Autscape in more detail at a later date.

Another tabloid story about Tiffany Pinckney http://torontosun.com/News/TorontoAndGTA/2...27/1149323-sun.html . I don't know why the mainstream media have not covered this story. Maybe it's because she died months ago (in April); the news in this case is the investigation of her death resulting in the arrest of her "caregivers".

Philip-- I've very glad things are going well at Autscape. Having a "great autistic time" sounds... wonderful.

I'm looking forward to more news from Autscape.

Toronto Star story about Tiffany Pinckney, which adds slightly to the information provided by the other media articles http://www.thestar.com/NASApp/cs/ContentSe...hAX&tacodalogin=yes

There is a publication ban (no idea why), which might explain why there is so little information.

""This isn't a mercy killing," Det.-Sgt. Gerry Harnden of Peel Region police said yesterday."

Well, no. Though I suppose it's always assumed to be a possibility when the person killed is autistic. I wonder what would have happened to Ms Pinckney's "caregivers" if they had, instead of neglecting her to death, drowned her.

And then there was the case of Katie Lynn Baker, a Rett's girl who was starved to death by her mother http://www.ccdonline.ca/publications/latimer-watch/1299.htm . Her mother was not charged in the death of her daughter. The cause of death was malnutrition, as might have been the case with Ms Pinckney.

This is a quote from the article about Katie Lynn Baker:

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Catherine Frazee states, "The nondisabled population...is most guilty of a colossal failure of the imagination. People you know often say to a disabled person, 'I can't imagine how you cope'. The inability to imagine what the disability experience is all about is translated into a kind of collective mythology that a person with disability lives a tragic life, marked by deprivation and suffering. This is simply not so and we have a responsibility to communicate that more and more daringly. We have to find more and more creative ways to express the positive powerful features of the disability experience and then to communicate these in every way possible."

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Unfortunately, the above does NOT apply in Canada to autistics. The disability community, of which Ms Frazee is deservedly a leader, has wilfully failed to imagine the autistic experience. It has rejected in its legal and public positions the possibility that, unless we become sufficiently normal, we are anything but tragic and suffering, if not actually horrific, and doomed.

And autistics in Canada are not allowed freely to communicate about the autistic experience, much less do so "daringly" and creatively, because we are assumed not to understand it. We are either too high functioning or too low functioning or too severe or not severe enough or whatever excuse can be found to discard any views and experiences which cannot be exploited for the usual anti-autistic agendas. Never mind that, according to DAWN Ontario and its allies and Mr Schafer (highly recommended by ASC), if we express ourselves, we are prenicious frauds, imposters, etc.

But I agree with Ms Frazee about the "colossal failure of the imagination" about very different lives, and how this harms actual living people, and sometimes kills them.

Edited by author 07-29-2005 03:36 AM
I don't know if anyone remembers the infamous LEGO™ therapy study http://www.ncbi.nlm.nih.gov/entrez/query.f...15628609&query_hl=4

If I remember, it generated some incredulity. But things are not going to stop there. "LEGO™ therapy" has become "LEGO™ Therapy". It has gone upscale, all the way to the apex of autism research and Dr Baron-Cohen himself http://www.autismresearchcentre.com/research/project.asp?id=204 :

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research project
   
Evaluation of LEGO™ Therapy
 Gina Owens, Ayla Humphrey and Simon Baron-Cohen

Children with autism and AS may be naturally attracted and motivated by systems of one kind or an other. LEGO™ is a highly systematic toy that appears intrinsically rewarding to children on the autistic spectrum. This project is evaluating if LEGO™ Therapy also leads to improvement in social skills.

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I can hardly wait for LEGO™ Therapy to become "scientifically proven" and/or "medically necessary" as an autism treatment...

Edited by author 07-29-2005 10:49 PM
Michelle at al

Trying to chase a reference and it's important that I get this right. There is an article on follow up of autisitic kids - NOT Lovaas et al, which shows that half went to university, one married and one 'needed' institutionalisation, for want of a better phrase. As AB says, no one 'needs' it. Would that be the Szatmari et al paper? Need it in a hurry!!

Edited by author 07-29-2005 11:13 PM
Alyric, see "An Autistic Victory" http://www.sentex.net/~nexus23/naa_vic.html . The study you want, which is Szatmari et al (1989), is described, sourced, and referenced, as it is elsewhere on this site.

This is the cite:

Szatmari, P., Bartolucci, G., Bremner, R., Bond, S., and Rich, S. (1989). A follow-up of high-functioning autistic children. Journal of Autism and Developmental Disorders, 19, 213-225.

Your description of this study *is not* accurate (I've seen what you've written elsewhere).

Digression: if you're going to invoke "classical" autism (which you did in the context of Szatmari et al), when you have time, can you put me out of my misery and define it? I would *really* appreciate that.

It is generally not okay to cite or reference a study that you haven't read. For all you know, I could be totally wrong about this study. You have to verify. This isn't directed at you, I'm just throwing it into the ether.

Edited by author 07-29-2005 11:19 PM
For clarity, I should add that if you do use a secondary source, you cite the secondary source, not the original reference which you haven't read. Reading a review (e.g.) doesn't allow you to cite the studies cited in the review, unless you have also read those studies. You can cite the review though.

"Autism as metaphor", an essay in the NYT http://www.nytimes.com/2005/07/31/books/31MORRICE.html .

The musings about an autistic-in-literature being barely human strike me as familiar from the non-literary portrayal of autistics by Drs Lovaas, Pinker and Hobson.

Edited by author 07-30-2005 04:55 AM
Hi Michelle,

Autscape was held in the Ammerdown Centre which is in a large country house built in the 18th century surrounded by extensive gardens, including a kitchen garden in which fruit and vegetables are grown, beyond which are meadows and fields with cattle grazing. Mr and Mrs Jolliffe, the owners, allow part of their house and the outbuildings to be used by the Ammerdown Centre, which is a Christian Retreat and Conference Centre. Because their daughter Therese is autistic they let Autscape use the Centre for a discounted rate.

I spent most of my first afternoon and evening at Autscape trying to find my way around using the plan provided, and sometimes getting temporarily lost. When I got the layout fixed in my mind I didn't need to use the plan.

I wore a yellow badge which indicated that I wanted to socialise only with people I know. I very much appreciated the lack of explicit or implicit pressure to socialise. Except for breakfast, when there were only a few people in the dining room, I ate my meals in the garden or in my room. I spoke very little in the open sessions and discussions, and always sat in the same place in the large meeting room - at the end of the second row from the back on the window side.

I avoided the lounge and bar, except to walk through, with all the noise, and the smell of alcohol which I hate.

There was complete acceptance of everybody and of 'different' and 'embarassing' behaviours. In reply to the question as to what they took away from Autscape, someone said community, and someone else kin.

Although there were stresses, such as when several people were talking at once in discussions, it was certainly a positive and enjoyable experience.

I will post reports of the presentations and discussions in future messages.

It's great that Philip will give you a fuller Autscape report; so far his account is pretty close to mine, including the getting lost and the appreciation, except I wore a green badge from the start.

As well as the cows there were several good natured loose dogs (which might not have suited everyone), and I saw a deer (muntjak), a blue jay, pied wagtails, finches, tits, sparrows, blackbirds, house martins and as we drove home a very large raptor, very close, which caused Sebastian to grab the driving wheel as my attention zoomed upward.

Michelle, your list re 'autistic performance' was heard with great interest when I read it out in my presentation - stating that they were thanks to you, that I had not read most of them, that you are a researcher and part of your work is to read research, and that I knew you to be highly accurate. The first item "superior performance in detecting and responding to visual social and non-social cues" provoked a request for 'chapter and verse' from Jim Sinclair - made me wonder too. I said I'd find out from you.

My notes from the Autscape presentation, "Being Autistic Together" given by a purple clad Jim Sinclair last Wednesday morning, 27 July.

Autistics in NT space:

Disadvantages for autistics:- not understanding; not being understood and being misunderstood; overload; demands for unwanted participation, but not knowing how to participate, and exclusion from desired participation; being thought rude which leads to criticism and hostility; being out of step with other people.

Advantages for autistics:- NTs tend to be more organised and efficient; they may appreciate bluntness; their social behaviour is largely predictable, such as regards other people's needs. In many ways they are more capable than autistics. NTs tend to be conformist, to be imprecise and have a greater toleration for imprecision.

Autistics in our own individual personal space have maximum control of our environment and who has access to it; minimal limits on freedom to do what we choose and on our behaviour; able to freely manage our time, and fewer interruptions. But may not have support needed.

In both NT and your own space you are the only autistic person. This is the major difference from being in shared autistic space.

In NT space everything is foreseable and expected. It is OK to be weird in autistic space. This can be liberating or frightening. But there are limits on injuring other people. In NT space rules and social expectations are for a large degree of conformity. They revolve around other people and making them comfortable. In shared autistic space rules revolve around boundaries, you are able to do what you like as long as you respect the boundaries.

I don't think there is a single definition of "autistic space," so I don't think there's a way to so easily generalize about what the social rules do and don't entail. For that matter, the same is true of "NT space".

Edited by author 07-30-2005 11:42 AM
Continuation of my previous message (/m2279).

In his presentation, Jim Sinclair said that in shared autistic space the way people choose to communicate does not affect the value of their message.

Autistics in autistic space have the novel experience of being able to help other autistics. It is a learning experience and an opportunity to become responsible for one's own support needs.

Possible hazards in autistic space:- overload may be more likely than in NT space because of sleep deprivation, disorientation, and if it is a new experience.

Philip, Dinah--thanks so much for your descriptions of Autscape. The setting, complete with wildlife/birds (and dogs/cows) sounds rather mouthwatering to me, from my vantage point of hunkered-down-in-basement with weeds to look at.

I don't know Therese Joliffe, but from a distance I admire her for her work as a writer and researcher, and for doing things properly, unlike me.

Dinah, re "superior performance in detecting and responding to visual social and non-social cues", the study is Chawarska, Klin & Volkmar (2003). You can see the abstract here http://www.ncbi.nlm.nih.gov/entrez/query.f...2938707&query_hl=13

I don't have a pdf of this study; rather, I have a hard copy from my pre-Internet days as a database scrounger. This was among the studies I featured in my presentation (in French) more than a year ago re the autism face studies. I hope that soon, once I stop being too disorganized to write <emits sheepish expression>, I'll have something in writing re the face studies, which will include Chawarska et al (which is one of my all time favourites--that it came out of Yale is just the strawberry on top). It is a well-known study.

I'm very happy to hear things apparently went well at Autscape, which bodes well for the future.

From: Michelle Dawson Time: 02:19 AM
"Autism as metaphor", an essay in the NYT
http://www.nytimes.com/2005/07/31/books/31MORRICE.html .

(Found in above article):
"Critics seeking to diagnose literary icons may also be taking the current vogue for finding autism in dead geniuses -- Michelangelo, Wittgenstein -- to its logical conclusion."

It amazes me that people could leave out Henry David Thoreau when they make such lists. His "Walden" and "Civil Disobedience" make him the ultimate aspie in my book. Pedantic as hell, and highly spiritual too. A real one-of-a-kind character.

I wonder what this critic wrote when she reviewed Kirby's book?