Variations in the Presentation of AS Women

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It's not nearly so binary as all of that. It's possible, for instance, to interpret criteria A2 as "never having developed friendships in your entire life." But the actual wording suggests that it's possible to interpret the criteria far more broadly, and that involves subjective judgment calls. What are "peer relationships appropriate to developmental level"? It's unclear, never mind the fact that this criteria, like the others, can change over time as "appropriate to developmental level" ("normal") is re-calibrated with age. There's the same problem with the special interests criteria. Who decides if an interest is "abnormal" in focus and intensity? It can get somewhat objective.

I'd also point out that most tests for AS are on a scale with somewhat arbitrary cut-off points. The GADS test, for instance, which was used to diagnose me, says that a score from 61-80 is "borderline." What's the difference between someone who scores 79 and 81? Statistically, it's meaningless, and said diagnostician would have to make a judgment call in these circumstances.

I don't think anyone wants people without genuine social problems to be diagnosed with AS--that does distort public views of autism. But I also think we have to acknowledge that there is going to be variation, perhaps significant variation, between AS individuals on any given trait. Not everyone is going to have had the same experiences, and that's okay. For some of us, the disabling aspect of autism has more to do with non-social traits. I do well socially for an AS person, but am severely disabled by trait B-3. I get the feeling that some here would un-diagnose me simply because I am not as strongly affected socially, and that's fairly short-sighted. Each person's autism is very individual, and there aren't any obvious lines between diagnosable ASDs and BAP (Broader Autism Phenotype.)

Serena, I'm not much of a thread starter but if you or anyone else is discussing translating the criteria into reality feel free. I think it helps to be able to translate the technical jargon because we tend to read stuff and think "huh?" emotional or social reciprocity? wtf? It's not what most people are used to hearing. If we said "she doesn't want to go to the party even tho they want her there" it's easier to understand.

Millie, I read something about Attwood and presentation in another thread and I disagreed with what I read. It described experiences with AS that I could not relate to. That's where I reach these conclusions about Attwood, from what I read. It hasn't been my experiences. Which is why I question the idea of presentation in the first place. Aren't we making it more complicated and harder to diagnose? Why not simplify it? Presentations are going to confuse people. What we need are people who can look at real life situations and know something is up instead of rationalizing and blaming. So many of us have cried every evening for hours on end because of having to deal with being in school eight hours a day. The pressures for us are enormous. People cannot figure out why we are so sensitive and why our skin is so thin. So they blame us and they think we can easily change it if we wanted to. Truth is, being with other kids everyday all day prolly stresses most with AS out.

^ well said.

Well, you´re not alone there.... I think it´s pretty confusing at times. We have to remember that the (mostly NTs) doing the diagnosing see us from the OUTSIDE, so they are looking superficially at how the person comes across. I never read, in any description of a different presentation of women, that women are "good socially", or make friends easily. Basically, it is the same set of impairments. You seem to be talking about parents who are able to get diagnoses for children who don´t need it: that´s something I don´t know about, I´ve never heard that before. (Though it might be happening, I just never heard of it). According to what I´ve read, it´s quite the opposite; it is believed there are many out there who don´t have a diagnosis who really DO need it, particularly women. No one has ever said that the social impairments don´t exist though, then it would essentially not be AS. So, I agree with you there. I also agree with what others have stated that there are differing degrees of AS, and a person with a milder form has just as much right to a diagnosis as one with a more severe presentation.

In my own case, like some women on this thread have stated, I do not have a monotone voice. I can hear vocal inflections very well, and I can copy voices and vocal tones- (as well as memorize music quickly, etc. etc.; I have very good ears!) I learned how to copy my mother´s way of speaking. As a child, I was definitely not a tomboy. I was very quiet, shy and passive- (although that changed in adulthood! ) I never had an interest in machinery. I was always more interested in concepts than facts, as concepts appealed to my more philosophical mind. I smiled easily, so I did have facial expressions- (although I smiled indiscriminately at people, including bullies. I knew the rule that it was "nice to smile at people", so I used it in every case). These things, though making me look less like a boy with AS, did NOT make me more "social"! In fact, I was TOTALLY clueless socially. By the way, I did attract the bullies and I was rejected and alone in school- so by your own standards, I guess I would have qualified as "someone who needed help", even though I didn´t present like a boy. I was never diagnosed, and I have no way of knowing if I ever would have been, since when I was a child AS was not on the DSM IV yet.

I actually liked the definition of AS that the authors of "Women From another Planet" gave; which was essentially that about 75% of communication is non-verbal, NTs can "read" this non-verbal communication intuitively whereas AS people are impaired in this respect. So they need to learn social situations intellectually rather than picking them up intuitively. (There was then a story about one of the authors who, when she went to girl scout camp, saw all the other girls bonding and wondered how they did it; she was amazed at how "natural" it all seemed). When I read all this, I started to cry with relief and thought "that´s it"! The answers to all the questions I had about my life. (Bits of my life began to flash before my eyes, and many heretofore unexplainable things made sense as the evidence seemed to suggest that I do not pick up these things intuitively. In addition, I often wondered why people seemed to be so "natural" in social situations, just like the girl in the story). When I read that simple definition and that story, I thought I had AS. But now, the more I read, the more confused I get. If I´m supposed to "like this thing", and "act like that", and basically present like the stereotype they portray in books of the average man with AS, then I guess I don´t qualify.

It has to be severe enough to do this:

With two of the criteria in part A being met. That's some degree of social impairment so this talk about "mildness" is a bit contradictory too.
Most of what I am writing about is in response to a thread that had a quote from something Attwood wrote about women with AS and presentation that I disagreed with. Of course I agree totally with women who are having problems getting the diagnosis, and girls too. It's just that I disagree with the "presentation" talk and I don't think the first part of the criteria in the DSM should change unless it's to add additional criteria that reflects the problems we have connecting with others.
The second part of the criteria is more complimentary to the first part, but we can infer certain things and don't need them explained. The criteria doesn't say we cannot be imaginative, for one thing, so why does it need to be changed? Shouldn't we be able to figure out that if it doesn't say anything about being imaginative we can be imaginative?
Aspies say things about themselves on WP, like having a good memory and liking stereotypical subjects, that aren't part of the DSM criteria so we infer all Aspies are that way but it's not always the case.

the hilarious thing with me is that i was told by my mother i was popular as a kid. My mother is weird. I love her.
My whole life i thought i was popular as a kid. I never felt popular and never had any sense of actually feeling connection with people. I use people like objects. I care for some. but i do not FEEL for them. I have my own feelings, but having a sense of connection with others is impaired in me. I have always known this just as i have always known of the internal scream when someone tries to talk with me and the pain of interaction. I have to work hard cognitively to find connection where there is none. I find connection with people now, through my special interests. nothing else.

So , my mum says " you were popular." i later speak with my siblings who say i was eccentric and weird and strange. My mum also confirms this. She and siblings also tell me I had the most appalling meltdowns and hysterical episodes. My view of myself as popular was always based on my mother's script and not on my personal experience or the feedback from my siblings. I have also talked to teachers who taught me who tell me I was out of kilter with others. Not the same. one heard me on radio and contacted me and said she was so happy I had finally got the right answers to who and what i am.
I can be a leader in some ways. But that does not make me popular. It makes me a whistle-blower, contentious, and a polarising force. i live with dislike and always have done, and for me it is like breathing - a part of how it has been.

And these days I don;t really care about others. I just want to be on my own and paint, front up to the real world just enough to sell a work here and there and hide out on my own away from all of you people - except by virtual means on WP.

Turns out my mother's view of me being popular is based on ONE incident outside my primary catholic school. One incident...where a row of girls all said hello to me. This is how my mother thinks. Literally. She failed to notice they also all said hello to every person walking in the gate that day.
She has very very few friends or connections beyond family.
another incident at 9 whee i am getting really rebellious and am caught smoking at school. acting out...trouble. all sorts or problems arising> what does my mum do? she does not see it as a cue to see what is going on with me. No. She scoffs at the teachers who talk to her about it and ignores the whole thing. I do not get help or support. and my issues were so evident - if i had been in another kind of family back then in the 60's, my behaviours would have been noted as COMPLETELY out there.

I am one of 8. I do not even have the luxury of parents who were actually present or even interested in my childhood journey.
We are all so different with different experiences.

So my point is also this - the information one can glean about how you were as a little kid or little girl if you are older and trying to work out whether or not you may have an ASD - may also be coloured by the type of parent you have!

Funny you say that, Millie. I was telling my NT counsellor that I had always had to deal with a lot of people disliking me thoughout my life and she seemed shocked at the idea. I dont think it was something she ever had had to deal with.. the odd person here and there not liking her, but with aspies it can be on quite a big scale, because we can be blunt and to the point I guess...

Zen-Mistress, I suspect we ASD people polarise people. I know I do. I do here on WP because i am opinionated and blunt. It used to crush me. These days I prefer to view it as a sign that i am true to myself no matter what. Those that cannot cop me really can frig off.
I am interested in being me...in fact that has been my life journey - to accept myself as I am and to shed the rather derogatory opinions others may or may not have of me. They have them. Others do not. To accept I am exceedingly different and embrace it anyway and motivate myself to find ways to function in a world that does not cater to understand ASD's, let alone accept blunt and eccentric and verbose and stimming women with ASD's. We only fit in in our own skins. That is the key. Trying to fit into the world will ever happen for me. SO i have spent the past 11 years trying to find ways to tailor it to MY special interests and MY life...NOT the other way around, which causes us suicidal grief and despair because we cannot change what we are.

I have worked hard to learn to be happy in my own skin. And I want to encourage other women to do the same...to somehow find ways to live peacefully and with self-fulfillment...whatever our levels of impairment and struggle - to find some moment in each day where we can feel ok.

Yes, exactly, lol. This is the typical Aspie experience. I have had to deal with this sort of scenario a lot.

Yeah. I even went as far as to buy "How to Win Friends and Influence People" because i had so much difficulty..

Last edited by zen_mistress on 19 May 2009, 10:38 pm, edited 1 time in total.

That is kind of the stage I am at now, working to be happy in my skin, which is something I havent been able to master before, though I have had periods where I was happier than others. A lot of it for me is dealing with sensory problems and trying to figure out what sort of lifestyle I want/need.

Yes.

Sometimes it's hard to distinguish between what influenced my behaviour and what was just in the background:

A) My family's attitude, opinions and experience.

B) My emotional experience.

C) Social and Environmental factors: layout, nutrition, class size, noise levels

D) My personality

E) How oblivious or not I was to certain things

F) Care taker's personalities, teachers, colleagues etc.


Trying to tease some of these factors apart and trying to figure out what behaviour I was truly responsible for is hard. Was some of my behaviour caused by other people's actions/factors?

Also, there's my family's view of me, which is likely to be biased, along with everyone else's views.

Different people could see me behave in the same way and interpret this behaviour differently.

Someone might see my working quietly alone as a good thing, but someone else might see it as "anti-social", "shy" and "not willing to participate socially".

It's not a trait itself that's bad or good, but other people's interpretations that make it so.

Some behaviours are better suited to some situations and environments that others.

Also trying to separate the facts from the fear and ignorance had been hard.

Also trying to work out whether people have genuinely put me down, or if it's my reaction to the term AS due to years of negative conditioning.

Yeah. I even went as far as to buy "How to Win Friends and Influence People" because i had so much difficulty..

me too! and Machiavelli, and books on body language... didnt make much difference- just made life seem more like an incomprehensible game of chess- all coded moves and counter moves. like a minuette.
it seemed to highlight the difference between me and the rest of the world...

This happened in my case. My parents were so eccentric they had difficulty seeing what was generally considered beyond the norm.

When I tried to live independently, my father said "good!" and was proud because I described myself as a hermit and wouldn't let anyone visit. In my twenties, I told him about wanting to attend counselling for social anxiety, and he said "What do you want to learn to speak to people for?"

My mother filled out some developmental questions for me and noted things like social difficulties, but mostly wrote "don't remember" and had great difficulty admitting anything remotely negative, writing she's never thought anything was wrong. She didn't even check the item that said "poor conversational skills."

As an adolescent, my mother definitely didn't embrace my differences and would regularly condemn them, wanting me to be more normal. However, once I started enquiring about my developmental history, she said, "Forget about conforming to the world's idea of what being 'normal' is!"

When it came to writing about traits other family members displayed, anyone else could have written a book on their eccentricities, but she only wrote a couple of lines and still wasn't sure the behaviours were considered unusual. For example, she described my (adult) brother's all-consuming, long-term obsession with horror--where he becomes abusive and pushes my father or anyone across the room if they interrupt or don't listen to his monologues--as "just being passionate about something." However, nearly everyone else I come across in life informs me how noticeably unusual and abnormal I am or describes my family as "freaky."

I understand too; after over-exposure to people I get these exact feelings. On and off I am so overstimulated I literally want to scream and scream and run away - and that is linked with a lot of internal pain. I think a couple of points I have been driven over the edge (with my mum) - and I have actually started screaming at her, or sat in a corner and rocked with my hands over my ears. It takes enforced conversation to get to that point though (like when she's telling me off about something (at a time when I'm overstimulated, not every time) and she just keeps going and going (at which a different person would give up and back away after seeing I wasn't reciprocating), and after a while I start losing it and can't take the dialogue anymore because of the internal pressure, and the sounds start going to my head, until I crack or run away - the worst times are the ones when she follows me and keeps going).

Usually when I read books like that I end up in tears. It's really difficult for me. I have tried reading those self help books in the past and they usually upset me and I feel worse about myself. Even more hopeless than before.

They eat away at what little confidence I have, which isn't a lot anyway.