Aspies For Freedom

http://www.awares.org/conferences/

You need to register to ask questions, last year it was quite slow, but looks more organized this year.


"Welcome to Autism2005, the first online conference to run within the AWARES conference centre, hosted by Autism Cymru. Autism2005 gives you direct access to experts from all over the World. It is free and has unlimited delegate capacity.

The conference will cover the following subjects:

    * Asperger's Syndrome
    * Autism in Society
    * Biomedical Approaches
    * Brain Research
    * Diagnosis and Screening Education
    * First-Hand Experiences - Voices From the Spectrum
    * Genetics
    * Language and Autism
    * Other Theories of Autism
    * Other Therapies
    * Prevalence
    * Savant syndrome
    * Splinter skills
    * Services
    * Adults with autism
    * Sensory aspects
    * Autism and related disorders

Speaker list includes*:

    * Professor Uta Frith
    * Professor Simon Baron-Cohen
    * Professor Tony Attwood
    * Professor Rita Jordan
    * Professor Anthony Bailey
    * Professor Helen Tager-Flusberg
    * Donna Williams
    * Wendy Lawson
    * Paul Shattock
    * Dr Karl Reichelt
    * Theo Peeters
    * Dr Geraldine Dawson
    * Dr Digby Tantam
    * Dr Fiona Scott
    * Dr Tony Charman
    * Dr  Marian Sigman
    * Dr Patricia Rodier
    * Dr Rebecca Landa
    * Dennis Debbaudt
    * Herm Fishbein
    * Stephen Shore
    * Sallie Bernard
    * David Kirby
    * Olga Bogdashina
    * Dr Dawn Wimpory
    * Caroline Rutherford"

I would urge members to ask some questions, such as can the DSM that is now being worked on have a more realistic and positive diagnostic criteria. Can there be a criteria that is more suited to adults, not just children, and not the strong dependency on having parents as a part of the process.

Couldn't resist commenting on Uta Frith's paper, If we knew what causes autism: why it is important to talk about cognition.  Unfortunately, the AWARES discussion board doesn't seem to recognize paragraph breaks, so now my essay looks like one, looooong run-on sentence.   :roll:

Here's what I had to say -- properly formatted!  >>

"If We Knew What Causes Autism" -- Problems with the concept of 'mentalizing'

Professor Uta Frith writes:  "What is mentalizing?  By mentalizing we mean the intuitive attribution of mental states, desires, feeling and beliefs, to others.  Most ordinary people find it extremely easy to ‘put themselves in another person’s shoes’, or to recognise what another person may think or feel, to predict and explain their behaviour."

I know that other Aspies/Auties have, on many occasions, questioned whether or not it's true that people on the autistic spectrum have difficulties 'mentalizing' (in other words, have a deficient or lack of 'theory of mind').  I want to bring the issue up once again because I don't think that autism researchers have fully addressed this question -- and I think it would be great if they did so now in this more public forum.

My question is not so much do Aspies/Auties lack the ability to mentalize, but rather does mentalizing -- as defined by Dr. Frith above -- really exist at all?  Do most ordinary people really "find it extremely easy to 'put themselves in another person's shoes?'"  And, can they truly recognise what other people "think or feel"?  I realize that the very fact that I ask these questions at all might be a dead giveaway that I lack the ability to mentalize -- maybe I just can't envision how it is to be a non-autistic person.   :wink:  However, I don't see that it has either been properly discussed or definitively demonstrated that "most ordinary people" truly have such an intuitive ability.  I think that by working through a brief thought experiment, it will be seen that putting oneself in another person's shoes is not "extremely easy" at all -- and that to believe that accurate mentalizing is a fully intuitive process is misguided.

First of all, Dr. Frith's definition of "mentalizing" includes a number of abilities from attributing "mental states, desires, feelings and beliefs to others" to being able to recognise what other people think or feel as well as being able to predict and explain their behavior -- all, apparently, intuitively.  This is quite a broad range of abilities.  I do believe that Aspies/Auties have difficulties with some or all of these aspects of mentalizing (as Dr. Frith has defined it).

For my own part, I clearly recall having an epiphany one day when I was around eleven or twelve years old:  I was on the bus studying the man sitting across from me when suddenly it struck me that I could have NO idea what was going on in that man's head and that I could NEVER experience how it was to be him.  How could I?  I couldn't get inside his head -- I couldn't swap bodies or brains with him.  It was a shocking and life-changing experience -- from that day onwards I've tried my darndest to understand other people (and myself, as well).  In doing so, I've asked myself down through the years, how do people come to understand -- as much as they can understand at all -- what other people are thinking and how they are feeling?  How can we know what other peoples' mental states are?

Well, from what I can tell, the first step of mentalizing is the recognition of emotions as expressed by others.  The expression of emotions is the most fundamental method by which feelings and, perhaps, mental states are communicated.  (Please, bear with me if this all sounds very basic, but I really want to get down to the nuts and bolts of how people 'mentalize.')  People laugh, cry, get angry -- all of the emotions are expressed by people (without thinking, of course -- unless they are purposefully trying to deceive someone) in order to elicit a response from other people around them.

However, while we can look at someone and intuit (or consciously conclude) -- ah! that person is crying therefore they must be sad -- I would ask, how can anyone 'intuitively' know what that person is thinking?  Surely, the next (second) step after noticing that the person is sad is to start wondering WHY they might be sad.  It might be readily apparent.  For example, we might watch a friend crying at a funeral.  We might intuit from the fact that they are crying that they are sad (rightly so, I think).  But the bext step -- to understand WHY they are crying -- WHAT has caused them to be sad and what they are THINKING -- I do not believe can be achieved intuitively.

I think many people believe they can intuitively understand why their friend is crying/sad -- i.e. that they are grieving over the loss of the deceased.  But, what if the actual reason they are crying is because the deceased had cut them out of their will and they are no longer due to inherit the fortune they have been expecting?  Without having access to this additional, crucial infomation, there is no way anyone could possibily intuitively mentalize what our friend "may think or feel."  We might run through in our minds all sorts of possible reasons why our friend may be crying -- and we might actually hit upon the actual truth -- but, without knowing the facts of what had transpired regarding the will, we wouldn't really be "recognising" what they were thinking or feeling at all.  We would simply be assuming that they felt sad for a certain reason and would believe we knew, more or less, what they were thinking.

Furthermore, it's unlikely, then, that we would be able to "predict" what they will do.  For instance, we might go up to them after the funeral to offer our condolences, assuming that our friend has been crying due to grief.  In our mind, we would have predicted (probably not very consciously) that they would respond to us perhaps with sorrow, perhaps with thanks.  But, wow -- won't we be surprised when they respond to us with a hostile expletive since all along they have really been angry and upset!  (Of course, our friend might choose be polite out of courtesy -- but, nevertheless, we still have not intuitively understood what they were feeling or thinking.  We have just been doubly fooled -- once by ourselves and secondly by our friend.)

This is just one example of how I think "mentalizing" doesn't actually exist as Dr. Frith has defined it.  While I do believe that most people can readily identify emotions in other people via recognition of emotional expression in others -- an identification process possibly lacking or different in Aspies/Auties -- I fail to see how any ordinary person can accurately know what another person is truly thinking or know the reasons for why they are feeling a certain emotion.  People might believe that they can do this and operate under the assumption that they can -- and in many instances this (unconscious) strategy might work pretty well (probably why it's been selected for, evolutionarily speaking) -- but they are, nonetheless, operating under an illusion.  They are not mentalizing -- at least not as defined above.

And, thus, all of the misunderstanding that happens in human relations around the world....  What I mean is, if most people in the world could actually mentalize so easily and successfully, we'd expect there to little or no misunderstanding and hurt feelings between people (except for those purposefully caused).  Right?  But this, if we take a look around us, is far from the case.

Hurrah for Aspie Girl!

If we call the "theory of mind"  the theory of the 'theory of mind,' we can see it for just what it is. A theory. And open to question.

Stella

A very personal matter


I've been friendly with Amy & Gareth Roberts for about a year.

If Amy Roberts said "We want to talk to you on the 'phone," I would say "yes" (though I might be frigthened)

This email is to be understood as a guarantee certificate issued  by me in respect of Mr and Mrs Roberts,

Dr Prof Stella

Thanks Stella. (our surname is Nelson though)  :smile:

I have posted this question to the conference -

Problems with the DSM diagnostic criteria - professionals, do you have input?

Many adults with autism and asperger's are not happy with various aspects of the diagnostic criteria, and the way it is used. There are many adults who seek a diagnosis of asperger's, for example, as they were adults before asperger's was correctly identified and entered the DSM. However the criteria is largely focused on diagnosing children, and particularly the points about imaginative play are hard for people to remember as a child.

Some diagnosticians insist on having the parents of the adult to discuss the issue with, or actually refuse to diagnose, this is completely inpractical for many, whose parents may be deceased, estranged, living elsewhere.

Can those professionals whose input to the next edition of the DSM may be taken seriously, please consider the possibility of having a specific adult diagnostic criteria for autism and asperger's? Also the possibility of changing some of the language used to make it clearer and less negative? Such as 'impaired imagination' is very broad, when in fact adults with autism can have good imaginations for creativity, art, etc, so this point is hard to understand for those diagnosed, and those diagnosing. Instead a term such as 'difficulty in assessing how future events may transpire' for example, with an explanation. I would be interested to know if any of the professionals that are part of the conference will be having any input into the next edition of the DSM.

Aw, shucks.  :oops:

Thanks!   :wink:

I have the same impression/idea, too.  I can't think of a single NT that can understand me, for instance -- and only one or two that really go out of their way to at least try (kudos to them!).  On the other hand, the people that really do "get" me -- and who I "get" in return -- seem to be either Aspies or some other sort of  non-NT people (a good friend of mine is ADHD).  Plus, my Aspie boyfriend and I have been together for 12 years, and we understand/relate to each other's Aspies needs perfectly!   :wink:

I think you're really on to something there, Ryuujin -- that the two groups just have a fundamental difficulty understanding one another.

Excellent points!  It will be interesting to see what sort of answers you will get.

One person answered so far, but maybe I was misunderstood as she talks about music therapy being added to the DSM. :?

Many of the posts at the conference are getting very depressing, and it's quite different from last year.

It seems that many NT parents are posting as though on a forum, and then replying to each other, which could be done anywhere, rather than the 'experts on the panel' having any input.
There has already been many 'how chelation saved my son' posts, and when trying to respond the usual drivel responses that are based on emotion and not fact 'well you haven't seen my son' type of arguments on mercury.

Also parents advising each other how to find ABA, saying how good Son-rise is, the typical things on an NT parents forum.

I could read those things, and be argued down, and criticised any day of the week without waiting for a special conference for it.
:roll:

oh how brave of you to go there and hear it all, Amy!

How many of our ills come from the ideas of doctors reitterated as quasi-scientifific mumbo jumbo?

If only I had the corurage to stand up and ask them why there is not a single peer-reviewed paper on "chelation" in the whole of MEDLINE

Stella

*sigh* This is a reply to a post I made yesterday to the conference, that chelation could be dangerous, and after that there had been many replies, of the depressing kind mentioned above, and stopped posting on the thread, as 'banging my head on a brick wall' may have been more productive.

"Amy cites the "Do No Harm" rule and alleges that there was a death due to chelation.  A child did die while being chelated but I don't believe an autopsy has proven the cause.  Millions have become autistic because the agencies who are supposed to make sure drugs are safe failed to do their jobs.  I suggest that Amy should be more concerned about those people ceasing the poisoning of babies.  Chelation cures about 50% and helps improve about 75%.  Methyl B-12 claims to help between 80% and 94%.  If mercury was not causing the problem, these two treatments which address mercury poisoning would do no good at all.  Chelation can be a long process.  I have been at it for over a year and I continue to witness minute improvements in my son.  As I think back, the cumulative improvement is sensational!  Some people give up on this too soon."

Isn't it logical that children develop skills as they grow, and after a year any child would have more skills? Millions of babies poisoned to become autistic? Chelation helps about 75%????
Who needs real statistics when anyone can say a phrase and just place a random % or number on the end. :evil:

Does it really say that :shock:

Drifter, I know all the parents are not making those posts, but it was on a thread that I had started, and wished to participate it, but was then steamrollered into a big 'chelation is wonderful' advert. Also some of the other threads that I was posting in. Its not possible to read all of the threads, as following them all is too much.