Edited by author 07-31-2005 03:31 AM
For Clay, here's Polly Morrice's review of David Kirby's book http://query.nytimes.com/gst/fullpage.html...4A25757C0A9639C8B63

Hasn't Thoreau been outed as an autistic/AS person? I'm sure he has, somewhere...

Edited by author 07-31-2005 07:38 AM
Hello,

I studied European history of ideas and liberal arts at ECLA, Berlin, and now work as a volunteer for Autism and Computing. I speculate that the reason why the concept of neurodiversity is not in the public domain, and how it could be established in society both have to do with the history of western ideas.

I believe a step neccessary to make neurodiversity happen in the long run could be to make the following paper known throught the world:


Evolutionary Drive - The Effect of Microscopic
Diversity, Error Making, and Noise by P.M.Allen and
J.M.McGlade
http://www.autismandcomputing.org.uk/


SUMMARY: This paper is fundamental in setting out
exactly how and why evolution occurs at all. It shows
us that although “hill-climbing” seems a simple idea
for improving something, in evolutionary processes it
has important consequences. Firstly, for it to happen
at all, there must be “exploration” in character,
behaviour or strategy space. This exploration must be
allowed to occur in the absence of proof about the
pay-off that WILL result. It means that if “evolution”
had to put ideas for exploration to a Board of
Directors then it would have no pie charspreadsheets
to justify, rationally the expense. Fortunately,
evolution does not have to do this, and so essentially
random based explorations happen all the time, keeping
the system currently “sub-optimal” on any single
criterion, but allowing it tots or evolve creatively.
This is of enormous importance. Creative, adaptive
responses only arise for these loose, micro-diverse,
open and sub-optimal organisations.

Good luck with it,
Sebastian

(continueing my last message)

FROM THE INTRODUCTION: This paper we show how microscopic diversity (the differentattributes, skills and quirks of individuals) actually drives evolutionary change. We show that evolution will select for populations which retain "variability," even though this is, at any given lime, loss-making, predicting that we shall not observe populations with "optimal behaviour" but populations which can "learn.," Because evolution selects for populations with sub-optimal current performance, this in turnallows greater micro-diversity by a reduced selective pressure. Indeed, evolution isseen to be "driven" by the “noise” (fluctuations and micro-diversity) to which itleads.

Edited by author 07-31-2005 10:43 AM
To conclude my notes of Jim Sinclair's Autscape presentation on Being Autistic Together.

The ranges shown by autistic people in the areas of sensory sensitivity, intelligence, and extroversion/introversion are greater than that shown by NTs. More autistics tnan NTs are mentally retarded, but also highly intellectually gifted. Though he does not agree with the concept of IQ. Also there is a greater rate of introversion among autistics than NTs, but more extremely extroverted people.

The life and death of Tiffany Pinckney raises some questions. When her mother died would her sister have been vetted as an appropriate person to be Ms. Pinckney's guardian? Would the social services regularly monitor her sister and brother-in-law to ensure that they are giving her proper care? Until what age would she still have been at some sort of school?

There was nothing about it on the DAWN Ontario website, but I found there a link to the Ontario Ministry of Community and Social Services - http://www.cfcs.gov.on.ca/CFCS/en/default.htm. So I assume that the Minister of Community and Social Services had ultimate responsibilty for Ms. Pinckney's welfare.

Edited by author 07-31-2005 10:24 PM
Hi Sebastian,

Nice to see you here. I've tried briefly to read the paper you link to via A & C (and now I've tried a few more times). While I have some (heriditary) background in experimental physics, theoretical physics is very hard going for me.

One thing I'm pretty sure I disagree with in using this paper to make anything happen is that I'm mostly opposed to the assumption that people have to be useful in order to have permission to live. Ideas about what is or isn't useful change over time. Pinning hopes for a fairer world on the premise that we can prove we "deserve" to live is not something I'm too interested in.

But my understanding of that paper is so poor, I'm not sure the concern I've just stated is anywhere near valid.

My own ideas about evolution include that it has no direction. There is no evolutionary arrow going thataway. Evolution has no apex. Etc. Those are all pretty rudimentary thoughts based on my own totally inadequate knowledge of evolution.

One possibly unrelated note involves the author of another article which was published in 1987. Dr Lovaas has written consistently about "variability" as a necessity for general human survival. He has called autism the "terrible price" for the survival and progress of human beings (Lovaas, 2000). This is in one of the musings he has sometimes put forward about the role of autism (or autistic behaviours) in evolution. Also, this is one of the musings in which Dr Lovaas denies autism is a disease, but that is another issue.

This is maybe an example showing that an understanding of the essential role of autism in human survival and progress does not necessarily lead to acceptance of and respect for autistic people.

Edited by author 07-31-2005 11:33 PM
Thanks for the reference. I'll have to use the secondary citation, properly this time and invoking your legendary accuracy, though I can give the actual reference for those who can access pubmed. I wish this one was more accessible to the hoi polloi.
  

 
In answer to:

"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."

Definition huh? Is there one? I suppose the nearest I could come up with is the one you and Morton Ann used as the 'stricter' definition of autism circa what, pre -1980s? At least when I think of Kanner's autism as distinct from other diagnoses, that's what comes to mind. However, while we're on this topic, I would defy anyone to use autism as a noun and not be categorically wrong on several counts. Just my personal view but 'autism' per se looks, to my admittedly jaundiced eye, to have roughly the same specificity as schizophrenia. It's a very broad umbrella term for a lot of seemingly related external manifestations, which say little and perhaps nothing about what the real situation is for the person who carries the label. What can one expect of something like the DSM or the ICD for that matter?

Hi Alyric,

You can get the (not very good) abstract for Szatmari et al (1989) on PubMed, and anyone who has access to a university (which isn't everyone) or access to someone who has access to a university (etc)(I use both avenues), can get the study photocopied either themselves, or have someone else do it and send it to you. JADD is only online from 1997 onwards, so in this case, you are stuck with actual paper (unless someone helpfully makes a pdf from a photocopied version).

Re "classical" autism, Kanner wrote about how well some of the autistics he saw actually did. His original 11 had among them stupendous abilities as children (less so as adults, because of institutionalization, drugging, etc). One had an IQ of 140, which might have been as high as Kanner's (or higher). This high-IQ boy was not one of the "good outcomes" though. The 3/11 who had IQ scores were all in the normal range (none of these had a good outcome). A lot of these kids had a lot of speech.

The diagnostic criteria for autism (whether DSMIV or ICD-10) are not "autism". They are observable behaviours which are used in an attempt to identify those who are actually autistic.

Broadening the criteria (as we wrote about in the "Three Reasons" article) does not mean you are changing "autism". It means that changes were necessary because the previous attempts at establishing criteria failed to accurately identify most or even many of those who are in fact autistic.

Autistics diagnosed under the broader criteria are not "less" autistic than those diagnosed under the stricter criteria. MORE autistics will be found with the broader criteria, but that was the whole reason for making the criteria broader. The more strict criteria excluded a lot of autistic people, and this was recognized by clinicians and researchers.

I'm not going to try to address the specificity of schizophrenia, because I don't work in that area. But I work in autism. I just used autism as a noun there, so I've defied you, so to speak. Now you can tell me where I'm wrong.

There are genuinely two kinds of autism (primary and secondary). And there are AS/autism differences which come into play in experimental work.

But assuming that scientists (including the ones I work with) are simply stupid is not necessarily productive. I'm getting a bit tired of the "many autisms" thing, which seems to be trendy (maybe because Dr Laidler said so?). I need one of the people who is absolutely sure that autism is not a valid entity to actually provide evidence (e.g.) that there are no consistent findings in any of the autism science.

Edited by author 08-01-2005 01:40 AM
Hi Philip,

Thanks again, for your notes re Jim Sinclair's presentation. I'm pretty sure xe wrote about a purple shirt somewhere. Your notes made me wish (again) that I had been there to see this, and to ask questions or make comments.

I forgot to ask how many people were at Autscape. I have no idea. Did you know where people came from (UK, Europe, US)? I don't suppose there was an autistic Canadian there.

Re Tiffany Pinckney, there has been no indication from any Canadian organization that those who should have been concerned about her life and death have noticed what happened to her. I also checked http://www.communitylivingontario.ca/ , which is updated regularly (up to July 29, as I look at it now).

Your questions about Ms Pinckney are good. I don't know the answers, or how to find out the answers.

Another article in the Toronto Star about Tiffany Pinkney's death http://www.thestar.com/NASApp/cs/ContentSe...hAX&tacodalogin=yes

The "caregivers" charged with neglecting her to death are free on bail. Four relatives provided the bail money. The families of the "caregivers" are reported as "very pleased" that they were released.

Edited by author 08-01-2005 08:14 AM
Hi Michelle,

I overheard that there were 62 people at Autscape. Most of them were from the UK. There were some from other European countries, particularly Sweden. There were two American women, and an Israeli autistic woman. As far as I know there wasn't an autistic Canadian there.

There were several non autistic people there. But until they said that they were NT, I did not know that they were not autistic.

There is comment and information about Tiffany Pinckney on http://www.autisticsociety.org/postp4203.html. I hope she had some joy and delight in her life. It would be wrong to think of her as a victim, but as a strong woman who survived seven years of neglect. She did not "suffer" from autism, but from criminal neglect by those who should have cared for her.

The nature of her life and her death makes me so sad, angry and indignant; what she suffered and what she has been deprived of. The "autism community" in Canada if it really represented all autistics, would be remembering Tiffany and paying tribute to her. They would be demanding explanations.

In Britain since 1973 there have been a number of enquiries following the death of children who had suffered violence, abuse and neglect at the hands of their parents or other "caregivers", and the trial and conviction of the parents and caregivers. These enquiries heard testimony from expert and non-expert witnesses, and produced reports. There was a lot of media debate about the children's ill treatment and deaths and to what extent social workers were culpable in not intervening. Maybe an enquiry into Tiffany Pinckney's death would give explanations and ascertain the extent of social services culpability in not intervening to ensure that she was being cared for.

I wonder what defence the accused will make. Surely their friends and relatives would have known about Tiffany and maybe saw her when they came to visit.

Tiffany Pinckney must never be forgotten.

On autism and evolution, and an answer to Michelle's comment.

Thanks Michelle for comments on evolution. I found your reference to Lovas very interessting.

About the Peter Allen's paper: The argument is that in the long run, populations with greater variability are much more likely to survive than populations with less variability. A population with great variability would show most organism to be sub-optimal meaussured against their present environment, while some are potentially better than optimal and survive. This is even true for changing environments. The survivors will carry a drive for great variability with them, which Allen calls evolutionary drive, that causes even greater variability. In my understanding, he agrees that evolution has no direction.

This is what I try to say about history of ideas:
There is a present view that diversity of plants and animals, and superior "humans" next to it. Plato, Aristotle and the book Genesis make the claim that God-like humans were created, and animals and plants were of less value. Christianity in my opinion seems to carry around the notion that there is a desired way of being. This notion is also in Charles Darwins book on the "origins of life", in which he talks admireable about the "origins", and little about the process of evolution. But he laid down the groundwork for what is researched about the process of evolution, where "survival of the fittest" is suggested. From that one might conclude, that derivation from a norm (the norm of the "fittest) is somewhat a bad thing. This is most explicit in the DSM, which describes and relies on statistical deviation of a norm as a desease, as soon as these people fail to independantly function (make money) in (only recently individualized) society.

A view that diversity of humans is the outcome of evolution, and that diverse people are around, and that these diverse people are not neccessarily better or worse, rather than "survival of the fittest", those being somehwat of more value than those more different, may lead to greater accomodation of different people in society.

Re: "superior performance in detecting and responding to visual social and non-social cues", the study is Chawarska, Klin & Volkmar (2003).


I Just read through this paper. What is the big "take away" message here?

They said they thought maybe the autistic 2 year olds were better at tracking a simulated human glance to the right or to the left because the autistic kids were only looking at the eyes and avoiding the rest of the face.

That seems a little strange.

Here's my big hypothesis. Autistic kids are very good at noticing gaze cues, their minds work very fast.

Parents look over at a toy and look at the child and the child is still looking at his hands...so the parent thinks the child isn't paying attention.

BUT maybe the child is so fast at tracking the parents eyes that he looks at what the parent is looking at and decides it's boring and goes back to looking at his hands before the parent looks back at the child.

OK, not such a good hyppothesis. But it is amazing that the autistic kids were better than the normal kids at this, at least at 2 years old.

Does this work with Berone's article in Brain? He's talking good "edge detection" isn't he? I notice he gave you a nice nod of credit in that paper.

Camille

Edited by author 08-02-2005 02:19 AM
Thanks again

Yep, the abstract isn't particularly illuminating, more's the pity.

Note to self - never wax philosophical unless prepared to spend the next several days knee deep in epistemology.

And that was pretty much what I meant by the lack of specificity in 'autism' as a viable definable entity. Perhaps my science background isn't much use here, because I think of definitions in general as something which aren't too flexible. Hence the noun 'autism' really isn't good as a definition because it must be tweaked round the edges for every individual because it can really only apply to a group and only if left deliberately global. Look at how you used that definition change - as it became more global it included more individuals, but as it included more individuals the defining criteria applied less and less to each specific person so defined. That's what I meant quite literally as 'categorically wrong' or at the very least categorically, not all that homogenous. No slurs on capable researchers intended. My take on psychology is that it's perfectly OK as an intellectual exercise, just don't apply it to anyone since the best it can do is about 80% accuracy. A 20% iatrogenic effect is quite sizeable.

How does that primary and secondary autism work? Sounds very interesting.

Edit - just read Prometheus' blog caught up with the Aut Advo list. NOW I know what's up. Sorry about that - now can fix and thanks for the heads up on Kanner.

re Canadians at Autscape, in fact there were two - Heta's husband Paul (from Dartmouth) and Kalen who organised all the advance info so well. Neither of them lives in Canada any more. Interestingly, when Jim was looking for somewhere to present Don't Mourn for Us, he apparently chose Canada because the climate was so much more hostile in the US at that time. Times change...

Edited by author 08-02-2005 03:53 AM
Catching up, but first a few research stories. Except this one is a non-story http://www.nj.com/news/ledger/jersey/index...53206130.xml&coll=1 with too many problems to list.

"Some were high functioning and intelligent. Others could not utter a word," the expert pronounces (I would hate to be a non-verbal autistic in his clinic).

But they're not even finished the survey study yet, or the epidemiological study, much less published either of them, and here they are in the media saying how important they are. And do we really need another parent-report-only study (in which no one ever sees the children), even a big one? And do we really need *another* early early screening instrument (and if want to crank out more and more screening instruments, why don't they make one for university students)?

And no, the Brick Township study is not and has never been a "cluster". The same prevalence has been found many times over (including in Canada, as well as the UK--including one study published the *same year* as the Brick Township study).

Here is the more important research story http://i-newswire.com/pr39639.html (it is only a press release, but at least the study has been not only completed, but peer-reviewed and published). I had not known the term "polypharmacy" before, but it would describe what has happened to a lot of autistics (children and adults). I know an AS man who got serotonin syndrome (and tardive dyskinesia, etc) from extreme "polypharmacy".

Dinah, you might be interested in finding the journal article described above. And thanks for the info about Autscape Canadians. Paul (I now remember) wrote to me a few times, mostly about the Finnish conference (I think). I didn't know Kalen was Canadian. Jim Sinclair presented "Don't Mourn for Us" at the Geneva Centre. I'm not sure who was in charge then. Times change, for sure.

Hi Philip,

Thanks for answering my Autscape questions.

Here is a National Post story about Tiffany Pinckney that I had missed. It has been made into a pdf by the Ontario Association of Children's Aid Societies http://www.oacas.org/whatsnew/newsstories/05/july/27care.pdf It is the most detailed story I have seen yet. The two storey homes with well-kept lawns, etc.

Here is the short follow-up http://www.canada.com/national/nationalpos...a-a6e2-8163248b8144 (this is the entire article).

I agree with you about the Canadian "autism community" but I extend that to the Canadian "disability community". I'm waiting for them to show up and exercise their leadership. (I am really much, much too angry and generally emotional to write about this).