Variations in the Presentation of AS Women

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That's utterly bizarre.

Almost counterintuitive.

This isn't how I think at all: I always see the physical environment first...because...well, it seems the most obvious thing to look at!


The word environment in that case should be defined more accurately and less sloppily.
There's the physical environment and there's the social/emotional environment.

I've been on several Geography type fieldtrips and have noticed that I'm usually the only one trying to pay attention to the physical surroundings.

Most of the time, most people pay more attention to their friends than what's going on in the physical environment around them.

So I pay all that attention to my physical surroundings; and make lots of notes, only to find that I have to rush to catch up with everyone else because I was left behind by the group. I didn't know that they were moving on.

You're absolutely right and I misread you. Although we may be "more social" than men, due to societal pressures, we still struggle socially just as much. My mother was a college professor, so I grew up with the "educated woman" role model, which is something I've taken for granted. It is true that we naturally pursue intellectual interests at a rate that far surpasses neurotypical women, I believe.

According to the DSM, "lack of curiosity about the environment" is NOT as AS trait. Probably the DSM also uses "environment" with the meaning of 2physical environment", not "social environment"

That's one of the more contested criteria for AS from what I've read. It's probably a matter of degree in this case.

The physical environment can be part of the social environment--things others pay attention to--so a distinction would be difficult to make.

The curiosity about the environment question came with a short explanation and allowed for degree. It does include the physical environment; for example ignoring sounds/noises that others do not, but perhaps reacting to sounds/noises that others do not (for example finding them unpleasant.)

But here I wonder....If you think Attwood is trying to vanilla up the criteria for girls, why don't you write to him and communicate it? He seems very approachable and also very amiable and respecting of others' viewpoints.

He has said and i have heard him - that he feels the criteria requires broadening a little.

What you went through is very unfortunate. Are you maintaining it therefore needs to be the hallmark for all AS/women and experiences throughout childhood? this is a kind of subtext I am gleaning. Please feel free to correct me if it is out of kilter with your intention.






For me I think the point is it is a spectrum syndrome with variations in intensity and expression.

I think it dangerous people are being diagnosed unnecesarily - as was pointed out to me the other day in a thread. And I learned greatly from the poster's personal account and recounting of her experiences and am grateful for that.

I also think it regrettable if there are kind of borderline presentations for some girls -or boys - and they are shoved out of the mix because they are not severe enough. They may simply have a milder presentation, and may still need a little support - But they are not as profoundly ostracised as some other children. They may struggle in groups a bit, they may actually misread some obvious social interplays and they may also prefer to try to engage with kids who are not their age but considerably older. they may get a little bullied here and there, but not as severely as others' experiences.

I would ask those who want the criteria nice and tight and neat and in accord with a tougher set of standards - to consider how it may be if you had a child with a very mild presentation of AS? A boy - or a girl - do you think this could loosen the reins on the need for a stringent and very definite set of criteria?


I know reports are written for children who may have milder presentations and these are said to have an "AS personality type or presentation" that may require some monitoring and help, without the full-on interventions. So, today in australia, a child - boy or girl - like this, may receive this and there is a bit of extra help around social skills training or it may be suggested the parents get the Baron-Cohen dvd on facial expressions for the child, work a bit harder at teeing their kid up with other nice non-bullying children, and also develop a series of games around feelings/emotional recognition in the home to help the kid. (a feelings scrap book etc.) There is not the need for a full OT program, or a teacher's aide or a school staff meeting on strategies for the child.

This is simply a good thing because it helps a kid who may be struggling a bit but not too severe. Would you want that for your child, or would you want to keep the diagnostic criteria nice and tight so these kids are left in some kind of fallow patch or ditch to suffer in silence?

Would it be better to take the child to some clinician who barks "NO NO NO...you do not look at the ground when you talk to me. You are fine. Out of here. checklist for DSM-V (next ed.) NOT ticked in ALL the boxes. next patient please..........."

A "yes you have it - no you don't" black and white scenario does not translate well to the real life experiences of many families touched by ASD's.

When seen in the light of this scenario, - the personal - the small kid - boy or girl - who may have a very mild expression and requires a little help - I think a bit of vanilla does not go astray!

Attwood and his team work with real families and real people all day every day. That is why they say the things they say. They see families, and individuals who comprise families. They may see a parent with a more severe expression of AS, another parent who is fine, and a child in that family who is very mild and so they work with the whole kit and kaboodle. IT helps. It works. It makes for better home life. It is not a hypothesis being discussed on a forum. It is about helping people who actually need help with the real world because of ASD's and its spectrum presentations.

For some, it is real,day to day and not a hypothetical discussion about who should be "in" or "out."

ps. the above scenario is my own family's.
I write from the dual perspectives of a mother AND as a woman with an ASD.

millie, that was a great post. I agree that there are many variations of AS, as well as differing degrees. This is what I am fascinated about at the moment, in particular the ways women and men may vary from each other, (though not necessarily).

Just for the record, for anyone interested, I was not implying that women don´t have the same basic social impairments as men; I don´t think Attwood has ever implied that either. I think it´s just that from a superficial standpoint, the person may not have the same "look" that has been associated with AS up till now. Masking one´s difficulties is not the same as erasing one´s difficulties; they still exist. I think the 10-1 male to female ratio of diagnosis is a testament to the fact that we need to still learn more about women (and girls) with AS. Many of these people need help, or at least the self knowledge that a diagnosis can give.

I will enter this discussion though tomorrow, I had a long day at work and now I´m too tired.

Because my hope is he reads these threads and posts about him on WP. Maybe he does? Or his assistant does?


I don't agree and there's a practical reason to not agree. It's to give us all cohesion. We all need to have similar experiences with this diagnosis. It helps us to know others are going thru the same thing socially. It's VERY important when not understanding how to effectively socialize is the hallmark of a syndrome. Much more important than to other syndromes that are less likely lead to isolation. All humans have a need to connect with somebody. People who are deprived of these experiences tend to suffer a lot psychologically.
If suddenly there's a lot of people Dxed AS who have no problems socializing it's going to cause problems. People who have AS who have trouble socializing are going to feel even WORSE and like it's all their fault and they are somehow guilty and are purposely not making the effort. People are going to accuse those of us who aren't liked, too, of doing something on purpose to sabotage it because over here, there's all these popular people with AS and if they can be popular we all can be which is hardly the case. Just sift thru the numerous posts on WP Aspies have made and you will see the agony social isolation and other problems getting along with people and dealing with them in a beneficial way can cause.
See why it's so important to stick to this specific diagnostic criteria for this specific syndrome?
I'm not saying that girls who can socialize well aren't on the spectrum or have a diagnosis...just not this particular one. If they are social and have the other traits, just not the trouble socializing I would say they have PDD-NOS, not AS.

It's important to keep the cohesion that's why we call it a specific syndrome and not just "an ASD" and leave it at that. It's because there's too many varying traits in ASD and lumping everyone together into "ASD" and not narrowing it down more is going to pair people who can socialize well with those who cannot, people who are well spoken with those who might not be articulate, less functional with highly functional. All these people have different needs that are going to have to be met which is why we have specialization and do not lump everything together.
You need to have problems socializing...ie: getting bullied at school, bullying others at school, having people not like you, not wanting to go to school, negative attitudes, and whatever else.


My intention? I think some women posting on WP went thru similar things and it had nothing to do with my intentions...it had to do with their circumstances and their reality. If someone is diagnosed with AS and are having trouble getting along with peers special attention can be paid to this particular deficit and they can learn more about how to get along with others in productive ways, how to use support systems, typical social stuff that most people do not need because they learn it on their own and can figure it out. AS people do not do this so easily.
You give me the impression you think I have some kind of control over other people with AS's childhoods and how bad they are. It's got nothing to do with me, it's the reality we have to deal with everyday when we go thru life with AS.



Yes, but the problem with broadening is cohesion. It's important for people with Dxs to know others have the same experience and they are not alone. It's important for those of us diagnosed with AS know others diagnosed with AS struggle with their relationships and dealing with people, have problems with TOM, aren't always well liked by everyone, make mistakes, all the things that mean we have AS.
It's better to put the people who can socialize well with others who can socialize well, not with fragile people who are already stressed out, dejected and suffering from feelings of alienation and isolation.

But people can still be on the spectrum and not as impaired. Like, they can have processing issues and be somewhat withdrawn, but still have friends and be well liked. They know how to overcome the differences they do have and can build bridges with others, compensate for their shortcomings without getting really stressed out about it all.
I think there needs to be the catagory PDD-NOS for people who have a few of the criteria but no problems (or very minor) relating to other people.


If they are ostracized, to me, that is AS. Ostracization is profound enough to meet the criteria for the first part, now they only need one for the second part, like maybe a few stims (which often resemble hyperactivity; always moving) or a preoccupation which most kids are preoccupied with various cartoon characters anyway.
It's important to break down the diagnostic criteria into real life events, like, what are the effects of it? What is reality going to be like for the kid who meets the criteria? We have to identify that reality. When we do, there's the diagnosis.


I would want my child to be with other children and people who share the same problems, first and foremost. I wouldn't want my child to be the only kid who can make friends in a group of kids who cannot, or the only kid who can't when all others can.

The thing is, if they are struggling enough to merit those services, somebody must be doing their homework and aware there's a problem and doing the best they can to correct it. Schools like that are doing their part but other schools might not have such options available or know enough about it. Like, what if a kid is continuously disruptive on a chronic basis and is blamed for it and disciplined with everyone in the school thinking he or she is a "bad seed" or chronic discipline problem, will never get anywhere in life, is a lost cause. This kind of thinking still exists in some places. The child who is most likely the one with undiagnosed AS but the teachers and others (parents if they don't know any better) are playing the blame game and not realizing the actual cause.


We need well trained diagnosticians who see the big picture. It's not about looking at the ground. It's about our misery when we fail to fit in with others in our class in school.


But we do need the narrowing and cohesion a specific diagnosis gives us. When people who know about AS think of AS they think it's kids who want friends but can't seem to make any. Unhappy kids struggling socially comes to people's minds first and foremost. That shouldn't change.

But they may have a different diagnoses. You have to find the correct one and treat them based on accuracy. The diagnosis need to be taken seriously too, no matter what they are. We can't say "oh it's just PDD-NOS" and think it's no big deal just because it's that diagnosis.


That's good. When they are able to identify the ones who need it, great, but we have to keep in mind AS is more about lacking social skills, getting in trouble on a chronic basis because we talk all the time in class, would rather be doodling or thinking about something else than doing our assignments, or getting on classmate's nerves for reasons we often can't help than it is about making good grades, being the teacher's pet, being quiet and well behaved, and having a rewarding friendship/social experience.

Which is why I say identify the ones who aren't making friends, male or female, and give them options instead of rationalizing and blaming them.

I find this to be true, for me. I pick up inflections and use them in various social situations. I also find that when I am feeling very tired or overwhelmed, my voice tends to go more monotone, and eye contact gets harder to maintain, even for a few seconds.

i was referring to your intention regarding the specifics of your position. I enjoy reading your posts and am merely interested in your position as you enunciate it all so clearly, even i if I do disagree.

i do not mean to give you the impression i may think you have some kind of control over other people and their AS childhoods. not at all. I was just trying to clarify whether or not there is any room for an interpretation of the criteria that extends beyond your own personal experience. And i think you elicited that quite clearly in your post above.


And on another note quite aside from the above:

As for my story, I was bullied at school, AND duxed and scribbled all over schoolbooks doodling and got drunk at school and did the bulk of my final year in high school at home (only picking up assignments and attending the occasional class with permission from the principal because of social/ sensory difficulties) and usually had one other girl around who mothered me. I also couldn't look people in the face, was a drug stuffed and oppositionally defiant mess who also happened to have an ASD that was undiagnosed because of the era I grew up in. My mother who has many traits now acknowledges to me that her particular view or perception of my childhood may well have been misinterpreted because of her own AS traits. (she cannot even remember my birth.) But she does say i was always quite strange. She says that in a nice, blunt way - a nice, intellectual and blunt way - the kind of way i might say something - with scant regard or understanding for the way her views may impact others. In short - an impaired social communication face to face that has left quite a few amazed at her directness and lack of tact. she'd fit right in on WP.


as for me, I kind of like the BIG A as Inventor coined it. Just the BIG Autism in all its facets. The BIG AUTISM SPECTRUM DISORDER.....and it is here to stay i suspect, courtesy of the next edition of the DSM.....




And wheter we like it or not, the next DSM - will lump everyone under the label ASD or autism or some such thing, so there we go.

Thank you for the introduction millie,

While I do see a lot of outcomes, it is all Big A.

On a recent thread Sora mentioned that it comes down to white mater in the brain, our structual differance, and that can be left, right, connecting, and the result is, a common social defect, but focus in verbal, spatial, as the main focus.

Not connecting with others is common to all, but presentation comes from brain development.

I explore and store facts, love them facts, can never get enough, what is true is true, and the rest is to be ignored. Collecting and ordering facts, seeking to fill in the spaces between, make my map of the world, has turned me into a writer.

Facts make Science, but they have become clubish in the last hundred years, no one is allowed to think without having an advanced degree. When all of their education is based on some facts, and ignoring those that do not fit, I see a story telling problem.

An older version was, you can have any view of history you want, as long as it agrees with the Bible.

This "Prior Agreement" stuff bothers me, worse, my main story is about 35,000 years before the Bible.

I was only out to make the story fit the facts. It does, but Prior Agreement pops up.

I see Prior Agreement in many things, the Male Brained view of AS, Facts, Systems, being uncaring about the feelings and lives of those you slaughter while looting and pillaging.

These historical views of maleness do fit the observed male pattern of AS.

When the same is observed in a female, the description changes.

Where males can be seen as an ideal Warrior/Engineer, females are seen as a failure to their gender.

Tomboy is the most acceptable discription, but if she does not outgrow it, continues to hold her personhood as equal to males as an adult, there is trouble.

It is not by intellectual growth, but as sexual role identity where she is judged.

From Sigmond to Baron Cohen sex has trumped brain development.

Females are judged first by looks. Second by economics.

Staying in the house, being compulsively orderly, OCD cleaning, not speaking, is an ideal female.

Being socially isolated, living under house arrest, speaking only with her owner, if at all, being sold by her father to her husband at twelve, is all in the Bible, and it is the Word of God.

This Prior Agreement is the lens which all things are viewed through.

As it is easier to fit females to their traditional roles, less AS is noted.

As brain science, the development of white mater is not a male thing, I would say it would have to be equal to continue in the species.

Males with AS can be non social, and disrupt the Prior Agreement, so they get noticed.

Females being non social is expected.

What are called my defects have to do with a Prior Agreement that I do not accept.

I can only see what I am good at, better than hairless ground apes. Facts, Memory, Story Telling, Systems, and a total focus on what I am working on. My work is my life and I live it.

I do not miss what I never had, I am a natural hermit, Bookish, and follow my own path of learning, and production. I make things, sell them, and write. I like isolation, for others are not dependable, so I also print, bind, and market books, which all goes back to I see how systems work, and I am a first class machine doctor.

As a male AS, or HFA as I see it, I was a hated child, a feared young adult, and am now a Publisher.

I never changed, I cannot change, but the perceptions of who I am changed.

I did not fit in, for my brain is hard wired to one pattern. Only Applied Autism works for me, and just being myself worked out, after many years of listening to hairless ground ape's mindless chatter.

My history is millie's, finding what we are, and doing that. She paints what she likes, all day, every day, and keeps the rest of life at a distance. I do not think she cares what others think of her work. Most know nothing of painting, have no art in their lives, see pictures as decoration, and would never own a print, much less an original.

Most painters copy, work to develop a single style, and use social networking to market it as "Art". They are artists, as a job description. Millie is hardwired to create, and the flow changes, she is visual creative, and the world is accepting that.

I write for myself. Lacking ToM, I could not do otherwise. I tell stories as I see them, as they tell themselves to me. I am not social enough, or have any understanding of the world, to deal with being a Writer, I could not do book signings, deal with publishers, but I can build machines, and use the Post Office.

In this output phase of Applied Autism, millie and I are the same. Our skills are very different, which has to do with white matter density in various areas of the brain.

What is the same is we are both doing what we are wired to do. It took a while to get there.

While our faults are many, failing as children, young adults, male and female roles, humans, giving social support to the species, not upholding the Prior Agreements, the results are Applied Autism, doing what you were wired to do, no matter what that is.

This is a brain centric view of life, one person of energy, one system of wiring, excluding all other factors.

Fitting in, we are doomed to failure, and that does make us unhappy. Becoming a one of a kind self, it is a much better life. Everything that is said to be wrong with us, comes in very useful when the focus is inward, self, Autism.

It is a very different condition when viewed as "Having a sense of self". If we were writing the DSM, lack of identity would be a major condition.

If we were the majority, the world would run, there would be less small talk, and more people developing self. As a minority, it does produce some great markets, few spend days at anything, being self directed is not to be expected of workers. For most, a clear and limited job description is needed.

In a trade off for not being popular in school, not spending forty years in the factory before being planted, at great expense, we get self, and the chance to develop it.

It is slow, we score late in life, but it is fun, and there is no point in pleasing people you will never see again, just the one in the mirror.

I am self centered and greedy, I do not share. It works for me. I do not see it as gender related, just brain centered living. The only opinion I value is my own, and that about my progress in work.

I value things that support self, and like millie, feel that interaction with people is killing me, anything that harms my path. This seems a universal, we feel harm from common things, and it is real. What is normal for most is suffering for us, and where we are happy, most would go insane from the isolation.

AS males are not known for being hot and studly, or rich, yet 50% of WP is female.

As far as mental presentation, I have to check your sex often, your words do not define gender.

The Autism is there, I see Big A, but the numbers don't match the Dx's.

As genderless brains on the Internet, Autism fits. So the inbalance in Dx must have something to do with deep seated prior agreements, that there is nothing wrong with a girl who looks good.

Combine the youthful elfin look of AS, with being female, and most would give it a pass.

Attwood is just following the facts presented on WP. AS girls do not have to act like boys.

I do not see it as broadening the criteria to make it fit the observed facts.

Of course, since I lack ToM, 80% to 90% of the females here may be lying to me, and have spent their lives in learning to fake The Big A. If it is an act, it is a good one.

This goes back to my main point, we must self define, for we are the only ones who are inside the game. I do agree with outsiders, we miss some common stuff, and if they would only tell us what it is, life could be better.

The male/female ratio is a point we self defined on WP, and Attwood has picked up on it.

Applied Autism is the view that we cannot renounce the Big A, but we can learn to use it.

I will never have a social understanding, but my machines don't care. If I have income, and provide a useful service, that is the best that can happen.

Another Attwood, current Dx is 0.66%, and 80% boys. Just counting the WP girls, 1.3%, and that is a disability measure.

Truth is, 10% of the population is part of the Big A, many who would qualify under DSM, are like me, just got through life because I can fix machines. We can all use better support, and that comes through understanding, which is hard for outsiders.

Self defining, Applied Autism, what works for us, what drives us mad, needs to be expressed, for our own sakes, and to educate the outsiders like Attwood, who would help, if like us, the problem could be defined and understood.

As millie mentions about her mother, it is not just us, but the mix we grow up in, and live in. That gives as many possible outcomes as our range due to where the white matter is dense in our brains.

The main two forces I see are the results of trying to fit in, and failing, unless we are really cute, then all is overlooked, and the amount of Applied Autism, of following our own stars, and the path to self.

We have work to do.

i think the different presentation argument is true.
im so bored with being told i 'cant' have a.s. 'much' because i can hold a conversations; no one is there to see me afterwards when im really tired from just an hour of someone else's company.

i also fit the picture for reading fiction over non fiction, and crying a lot- both of which girls do over boys with a.s.

but for all my skirt wearing girlyness, i am still more comfortable with boys tahn girls, as they talk in facts (politics, books, football) rather than about other people (boyfriends, sisters, other friends), as girls do - its a language i understand.

there was an excellent article in the press a month ago- someone posted it here at the time, but in case you missed it-
titled a no-nonsense 'doctors failing to spot aspergers in girls' it was a relief to find that there is increasing belief amongst clinicians of a difference (a.s women knew it without being told).

http://www.guardian.co.uk/lifeandstyle/ ... gers-girls

i still have a.s- but ive learn to blend in as much as i can, and force myself to hold conversations, make small talk. i collapse in private.

Millie,
Another way of looking at it is like this. Most kids fit the second part of the diagnostic criteria because most kids do have what could be interpreted as a special interest. Usually it's a cartoon character. Maybe it's a celebrity. It could be Barney for all we know. If you take away the social component you could make the argument ALL kids have AS. It's the problems understanding how to socialize that are the hallmark of AS. This should be emphasized in the DSM, the stress should be on this part of the criteria being met, not the second half (special interests and stimming behaviours). The second half should be met but de- emphasized. In other words, most kids have no problem meeting the second half of the criteria. Inability to understand how to socialize has to be a big part of the diagnosis or you could make the argument all children have Asperger's which is why you should not broaden the diagnostic criteria to serve these selfish interests of certain people who feel like their kid has to have the diagnosis because they believe it means their child will be thought of as smarter and will be in the same league as Bill Gates, who has been connected to AS on some websites. You have got to weed out these vanity diagnosis seekers and it sounds harsh, but such people do exist. You cannot indulge the parent. The diagnosis has to be for the benefit of the child, not the benefit of the parent and it has to include a lack of understanding when it comes to socializing. No ifs ands or buts about it!! !

That is my official verdict.

Ana, are you able to point to some reason for believing Attwood is suggesting that either of the first two criteria (the category referring to interest is actually the third criteria) be dropped? I am unaware of any such suggestion ever having been made.

Taken from DSM-IV-TR

That's the criteria for the diagnosis, notice there are two parts, A and B, you need to meet two of the criteria for the first part and one for the second to be diagnosed AS. I think we need to translate the criteria into real life events, what is life like for people who experience this instead of thinking in terms of a checklist where we observe and check off criteria.

I'm not sure I really understand all this "presentation" stuff. You are either thought of as weird by others, or not, you have friends, or you don't, you try to fit in with others or not (lack of reciprocity), you have an interest in other people or you don't, you get stressed out too easily when around others, trying to talk to them and understand them, or not. It's that easy. All this "presentation" talk has nothing to do with reality. They need to work on finding those of us having problems and figure out ways to make our lives easier.

Ana, maybe, you ought to start a thread about real life examples of the criteria. I think it would be very interesting to discuss. I seem to always be doubting whether or not I'm on the spectrum, and I'd appreciate examples of what others experience as per the DSM.

I have a really hard time taking my way of being, and life experiences, and putting them in black, and white text. I can't really tell you if I'm feminine, or masculine. I seem to contradict myself as far as personality goes. I over analyze everything to the point that I don't know what's up, down or sideways. It all depends on perspective, I guess.

I do know that as a young child I know that I entered kindergarten as a very outspoken little dictator. I was very concrete, and a stickler for rules, and order. Much like my 7 year old son. If someone wasn't following the rules, or doing things the way that I liked for them to be done, I let them know about it. By the end of first grade I figured out that I was 'wrong'. My spirit had been broken by my peers, and teachers. I got into trouble, and never did know exactly what for. What I learned from that was to be quiet, and keep to myself unless I'm absolutely sure as to what is going on, and how to behave. After that, my teachers described me as being in a shell, and I was almost invisible to my peers. I wasn't really openly disliked, I was just invisible.

I see my son going down this same path. He began school being a unique, bright, happy boy, and now at then end of 1st grade he is feeling beat down. He has decided that he hates school, and a couple of weeks ago his teacher told me "he does a very good job of pretending to understand when he doesn't understand what he's supposed to be doing. He won't ask for help, because he doesn't want to draw attention to himself, or be different, even though he really needs it." He has begun to learn mimicry, and it breaks my heart. He doesn't need a to pretend, or wear a mask. He's wonderful as he is.

Huh?
But i don't disagree with this ooooanaooooo.
In fact, i rather quipped about something similar on another thread a while back..."flavour of the month" stuff that has little to do with the kind of terrible pain some of us have lived in throughout our lives because of an ASD.

Impaired ability to socialise or to understand how to socialise is one of the key issues. I don't dispute that. We just draw the line in different places, that is all. Why would you think i would refute that issue?


For me, it is a question of degrees and I do not view it as rigidly as you do. that is all.