Reading

[aesmael]

Tonight is the sort of night in which I feel tremendous optimism and capability. So far doing a good job of not letting that trick me into overloading on things to do and thus stalling (like an engine).

So tonight we are reading the book my mother has on Asperger's Syndrome, to see what her information source is telling her: The Complete Guide to Asperger's Syndrome by Tony Attwood, ISBN 184310495.

Getting furious at the back cover is perhaps not the best start:

'Tony Attwood explores in depth the complexity of the mysterious group of clinical pictures known collectively as Asperger's syndrome, part of the wider autistic spectrum. He describes all the puzzling and fascinating aspects of these conditions and brings them vividly to life with illustrations from personal histories. He has achieved a real empathic understanding of children and adults whose basic problem is a biologically based lack of empathy with others. The book is to be highly recommended.'
- Lorna Wing

This is just wrong. I am capable of empathy, as are many other people I know, and a frequent complaint I see is that this is a false stereotype, when it is actually expressing empathy and communicating in ways others understand which is often difficult, or understanding the signals others are giving - as well as the lack of empathy shown by those who are supposedly innately superior to us in that area. This suggests the author has NOT achieved an empathic understanding because if he did he would realise this.

I showed it to my sister and she agreed, as well as picking up on and being outraged by the dehumanising term 'clinical pictures', speaking of persons with Asperger's syndrome as if they are not persons but puzzles.

Still, calming down, I told myself this person is not necessarily accurately representing the contents of the book, and perhaps the author did not see this quote or did not have control over what promotional quotes went on to the book.

This cannot be the book she mentioned having had when I was first diagnosed, since it was first published in 2006. I asked her about that and we could not find the old book. It seems likely it was lent to someone who has not returned it. While looking for it I mentioned my objections to that promotional quote and got told (paraphrased from several repetitions) "That is because you have a very mild case, other people have it much worse and do not have empathy." When I pointed out that some other people do not experience empathy either, she said "But those are sick, messed up people". Uh, thanks.

I am very inclined to be hostile to this book and what it contains, as some of its contents have been used directly as justification for denying portions of my identity.

The Preface is interesting, particularly the notes about the conditions in which Hans Asperger published his paper (Nazi-occupied Austria) - the statement that "education will 'render harmless the dangers which are in a child's genetic disposition'" make sense in the context of trying to prevent the sterilisation and murder of people, but I wonder, if true, what influence this might have had on subsequent developments after context was lost. Perhaps not much. Re-education to normalise people seems the standard sort of response and if Asperger had not advocated it originally I am confident others would have soon after.

What also interests me about the preface is what is meant when Attwood talks of the importance of learning to identify Asperger's in very young children so they can benefit from early intervention. What is the intended outcome of these interventions and what is their intended benefit (and to who)? Managing sensory perception issues is one mentioned later and seems like something which would be very useful.

I am more ambivalent about "We also need to develop and evaluate programs to encourage friendship and relationship skills, the management of emotions and the constructive application of special interests." Could go either way, and those can be useful, but I am wary because they could also be used for the purpose of shaping people into what they are not and do not want to be - I see those skills as useful to have when wanted, but developing them should not be used as an excuse to erase the original person in the name of making em 'acceptable'.

At this point I wonder if I should be so critical. After all, I am so often told how 'high functioning' I am and how mild my case is, so what right have I to object to what may not apply to me if it applies to others, especially since I clearly cannot really understand what is going on? But I am not for denying people choices and options for their own lives, but opposed to requiring people to be 'fixed' to meet the standards of others when they may not wish to. And I am trying to restrict what I say to my own experiences and observations, and if I have misrepresented something, hoping that I would accept correction with good grace.

The rest of the preface seems decent though. Not really a place for going into depth.

Comments

[lost-angelwings.livejournal.com]

*hug* :\

That sounds like a rly suspicious book if not just an outright misinformed and misinforming and thoroughly unhelpful book! >:|

I hate when ppl treat other ppl who are different than them as animals in the wild whose thinking patterns they must discern thru outward observation and interpret thru "normal" ways of thought >:|

[syntaxia.livejournal.com]

Well, from the asperger community, I seem to remember a lot of people liked the book and found it helpful. If some of the information is being used against you, that's more to do with the person who's doing it rather than with the book itself.

It's surprising (and rather scary) how often people misinterpret a simple statement.

[aesmael.livejournal.com]

There are some indications it is helpful and informative and so on, which is a big reason I am seeking (more than usual) to give it a fair go. As you say, it could be more to do with the interpretation of the person in question than the content of the book.

[taraxoxo.livejournal.com]

The talk sounds a bit privileged, but perhaps the authors did it without intention, like how people who have too much 'normality privilege' just can't envision a life without it.

[aesmael.livejournal.com]

The way you phrased that suggests to me you think that makes it better. I actually do not think this was a deliberate expression of such privilege, and hope what I wrote did not indicate such an opinion, but I certainly do not think that an improvement. Rather, I think it would be worse if this were deliberate.

[taraxoxo.livejournal.com]

No, I was saying that that did NOT do it deliberately, so we should just let go of the 'normlisation' bits and look at what other things they have to say.

[aesmael.livejournal.com]

I think you did not understand my reply.

[flynnacatri.livejournal.com]

Ignore me if butting in :D but I think they were saying that the authors were writing from their viewpoint; basing normality on themselves and ranging out from there/automatically using such language.

(I have noticed that most books and papers etc settle into certain terms and modes of speech and I adjust for those, so while the underlying reason for those terms matters, once adjusted to and compensated for, it does not change the message.)

[aesmael.livejournal.com]

Ya, and I understood that. My point is that I am aware of this and this is the perspective from which I am objecting.

[flynnacatri.livejournal.com]

Ahhh good, then i think you were both arguing completely separate points :D

[mantic-angel.livejournal.com]

We're I am slowly seeing the growth of a movement in this culture, that encourages acceptance of "disabilities" as things which ought to be a choice, not an intrinsic negative. Like homosexuality, a thing that some people value, which defines them, which they do not WANT cured.

I think this is very much in keeping with diversity. Indeed, I see one of the big counter-forces in diversity is homogenization: forcing cultures to integrate in to ours, to act like us, rather than valuing them for themselves. I think there are people who resent their culture, their gender, or their disability. I think that is fine too, but... I sometimes wonder how much less frequent this would occur if people felt safe and comfortable expressing themselves.

Me? Half my transition was because I "wasn't allowed" to wear skirts and the like unless I was female. Transition let me "get away" with things, and alleviated a lot of stress in that area of self-expression. Take away the gender roles, and I think it would have been much milder for me. But I also understand disliking one's anatomy (I wanted breasts!), and imagine that those with serious body issues would not be "cured" by a tolerant society.


Me, I value my perspective on the world. People are strange and confusing, but I also seem to have significant insight in to their operation simply because I DID have to learn to pay attention, to consciously read people rather than just intuiting cues and social patterns.


As for empathy... I find myself hard-pressed to define that word. Sometimes I seem high-empathy, and sometimes I feel like the world would not be inaccurate in labeling me "sociopathic." I seem to have a ... different sort of empathy?

[flynnacatri.livejournal.com]

We may not be incccurate in labelling you sociopathic, but I assure you we will only do it from a distance.


Oh wait...


MWAHAHAHA *points fingers* you're a sociopath!

[laura-seabrook.livejournal.com]

I remember reading a book at the uni library about epilepsy. It had a section about "epileptic personality" that seemed to describe me exactly. I was extremely upset for a while to think that my personality could be so predictable. But the truth was that it focussed on people who were in the middle of dealing with their problems. It was correct just in the same way that newspaper Astrology columns are - by selective omission of anything that doesn't match.

Yesterday I went to a Second Life meeting of gimpgirl. It was quite informative about how medical models are self serving and skew ideas about their subjects. It isn't just disabilities that this happens with - consider the medical model of trans stuff - fine as far as it goes, but very limited.

[flynnacatri.livejournal.com]

Ah, that book. This would be a newer edition - there was one in 1998, as well, he also has a website. I think it is one of the 'best' researched. More in that he is one of the few that was actually publishing and studying in this area, than any other reason.

Main quibbles: syndromes are long list of things you have, may have, sometimes have, have and leave behind, grow into, choose to have, overcome and exhibit at different intensities and forms. Any one thing in there has as much chanc eof not being part of your makeup as it has of being part - also dependent on other influences.

I had noticed his 'lacking empathy ' thing,a dn I think thta's one area he differes from most other things I read - most agree that Asperger's HAVE empathy, and wish to interact, merely cannot/don't know how. As opposed to autism, in which they are actually detached and not interested in social interaction. (HUGE generalisation, and lots of room for flucuation, but that's how it came over to me).
I have either very strong empathy, because I have learned to almost literally put myself in other's places, can be paralysing on occasion, (as well as not knowing what will happen/people will do - my social interactions improve markedly as I learn to predict to myself all the different possible outcomes) or being completely detached, emotionally, and have to be careful not to be too manipulative or get caught - similar to mantic_angel's description, actually.

However the greatest problem with those, I found, was that they deal with and are aimed at parents of younger children (usually up to, and rarely including, teens). So, firstly they are 'how to deal with someone else' explanations, and secondly they are about someone who has little life learning, maturity, or self coping/understanding.
They most useful, to me, where the more strictly factual medical/social research papers that I read accessed via the University, and Congratulations! : it's Asperger syndrome by Jen Birch. Which was a personal account from someone who had it - some unpleasant bits in there, tendency to trust/end up in abusive relationshps for example, the charming 70's(?) NZ mental health system which was a lock-up-and-drug-them type, then. But also sexuality issues and other -'real'- things that the children's books don't cover. It's not something to diagnose yourself from, but it might help give your mother (or just you :D) somethign else to relate to - a human side, to balance out all the only-partly-applicable medical/counselling sides.


hmm, looking through my library catalogue, there are suddenly a lot more from 2005 on (bought after I started looking into it) addressing Aspergic adults and people looking it up for themselves.
ack, word limit.

[flynnacatri.livejournal.com]

Here are some more interesting ones
All cats have Asperger Syndrome
The exact mind : an artist with Asperger syndrome / Peter Myers, with Simon Baron-Cohen and Sally Wheelwright.
Genius genes : how Asperger talents changed the world / Michael Fitzgerald and Brendan O'Brien.
The Asperger love guide : a practical guide for adults with Asperger's syndrome to seeking, establishing and maintaining successful relationships / Genevieve Edmonds and Dean Worton.

(none actually read, personally, so no warnings either way)