Some girls with Asperger's syndrome don't get diagnosed

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tlcoopi7
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05 Dec 2008, 10:38 pm

In my case, I was not dx until I was 23, despite the fact that one can clearly see the common signs written in my IEPs in grade school along with an interest that was considered strange for girls, which is Transformers. Both my mom and my older sister suspected that my niece (my older sister's daughter) have Asperger's, but she is not dx. Maybe the lack of female study is the cause of it.


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shortysporty
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08 Dec 2008, 10:40 am

I recall only one incident were I was in a fight and it was a group of kids led by one girl and later we called a truce. Otherwise I never felt bullied. I isolated myself. I used to in high school just walk away from classes and hang out alone at the track or in the rest room doing homework for another class. I was weird in Jr High and High school. I still am but it is more like an aloof kind of weird..even though I do want to fit and I do care it is like I can not make the connection work properly. Never could. I recall spending lunch sitting in the cafeteria looking at the crowd of schoolmates getting their lunches and books and horsing around with each other. I sat on a bench seat back against the wall and watched. I felt nothing but amusement at how they reminded me of puppies or kittens in a litter playing with each other. Was not a bad thing we really are so much like our critters it is humorous! I think it was tough being disconnected yet it was cool to look back and realize how much I did see and how much I did get to know about the others by sitting back and observing. So I did miss much but so did they.



0031
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08 Dec 2008, 4:45 pm

I'm still waiting for a diagosis for two of my daughters. They both are quirky in different ways. Thank you very much for linking the article.
One of my daughters, she's only five, has such a thirst for contact that if someone behaved friendly toward her, I could easily imagine that she could walk off with them.

I have never kissed my children directly on the lips. I always aim for their cheek instead.
Yet this same daughter goes straight for my mouth when she kisses me. She has less of a barrier to intimacy.
When she first started school, she would walk over to the teacher and stroke the teachers arm, and give the teacher compliments like "I think you're so nice." The teacher saw it as a way of my daughter trying to get attention, and discouraged it.

I don't know if my daughter is an Aspie, but the part in the article over the longing for social contact and the naivity of the Aspie female is something that does apply to my little one. I hope that she can learn to avoid bad situations (which are sometimes also hard enough when you're NT.)



whipstitches
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13 Feb 2009, 12:03 pm

I can pass the Sally Anne test and so can my toddler, but that doesn't mean we don't have some special "issues".....

I never had any friends at school until I was in the 7th grade. I had three friends who were in the band and the orchestra with me. We went our separate ways in highschool because music was all we had in common.

I did not have a close female friend all through highschool and still don't have any female friend that I would consider to be a best friend.

I could never figure out how to get friends and I could never figure out why the other girls thought that I was weird. I am only just now, as a 35 year old woman, begining to understand that I am different from other women.

Everything that I know about social interaction has been learned through observation and trial and error.

I don't think that anyone will likely ever formally diagnose me as having Asperger's or otherwise because I am starting to realize that I know more about the syndrome than the therapist and the doctor do. It isn't considered "common", so they don't have the information readily available. Most people don't want to take work home with them, so they likely won't read up on the subject. I fear that it would be out of line to suggest that they read up on the subject. Who am I, anyhow?



Ligea_Seroua
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13 Feb 2009, 6:45 pm

millie wrote:
Every change in my life has been a nightmare...from changes in years at school, changes in teachers, changes in family structure. Changes in my body at puberty were pure and utter TERROR. i felt like i had a boy;s brain and i felt like i had a girl's body and when my physical development started i was thrown into chaos. I bought one trainer bra which i went and bought on my own secretly. And i did not tell anyone my periods had started for about three years. I only recently told my mother this wehn the AS can of worms opened in our family. (catalyst was my nephew's dx as HFA.) I felt like i was seven and getting my period and i was not ready. and i thought i was a boy....all very confusing.


Oh gosh can I identify with that...I didn't go through puberty til late and it triggered a suicide attempt, I still think I'm mourning not being a child and therefore genderless and dependant. I also earlier on was convinced I had a chromosomal disorder or something like androgen insensitivity and might be biologically male (i'm not, but it seemed a reasonable explanation)

And despite fitting the quiet, good little girl stereotype most of the time when I was younger, I also often got into violent physical fights, usually with boys, usually started by me. Never verbal rows, just bizarrre agression. :?


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LolaGranola
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14 Feb 2009, 3:47 pm

I was very happy and playful with the neighborhood boys. Then elementary school started, and I adopted a passive personality. I was very quiet, and read about my interests at lunch. I wanted friends, but by second grade I was completely ostracized. The one time I asked why people didn't like me, they said it was because of the way I moved my hands.
I didn't believe them until I learned about AS. Until now, I never thought it was strange.


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Emor
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14 Feb 2009, 4:48 pm

I go to a social group every Wednesday lunch time at my school and I'm the only girl there out of 5 males. I'm not sure if they're all Aspire or Autistic, but either way they have a hard time socializing.
I do have a friend who's presumably Aspie or Autistic, and she seems to blend in more(but I don't bother anymore), but she claims the reason she gets help in class is because she was rarely in school for one year, but I HIGHLY doubt that considering she gets more help than me and such. There's other people who've had over a year off school, and don't receive help.
I remember trying to mimic people, but I gave up on that after it clearly had a lot of flaws. I was having more problems trying to mimic people than just being my self, so I was just my self, and despite no longer having any friends, I find school a lot easier. Even when I did try to fit in, I didn't, and in Primary school, I usually hanged out with an Aspie male(he's definitely Aspie, he told me) after no hope with NTs. Admittedly, I did get some friends in my final year of Primary school, down to my humour(which wasn't actually suppose to be humour, I was being serious, but no they thought I was joking about topics[which I still get to day]), but who left me for what I like to refer to as the popular crowd(though I'm just as well known as them[well, admittedly some people in my year don't know me, but only a few]).
I did make friends after a year of High School, but a year after making friends, I couldn't take it anymore. I knew I was faking it, and just could not tolerate their constant illogical acts. I think it was because by then I saw school more as a social experience which was *good* but I just saw it as an obstacle in life, which I wanted to get pass quickly and swiftly as opposed to making the most out of it, which I still do.
Sorry if I've went a bit off topic.
EMZ=]
EDIT: @ LolaGranage(sp?): I also research my interests at dinner.



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20 Feb 2009, 1:03 am

I was a pretty outgoing, quirky kid up until I turned 11 when I became super shy and self conscious. There seems to be a pattern here of girls becoming more challenged around this age. I thought maybe I had mild seizures which went unnoticed which caused the change. It was probably just the environmental standards which made it harder to live up to.

If all this is true, then it stands to reason that people with asperger's would be happier and more well adjusted if they were accepted like we were before we hit 4th grade.


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26 Jul 2009, 1:07 pm

So what's going to happen if they do get diagnosed?

How is that going to change anything?

Even when I was assessed, people didn't know what to do with me.

Some people just might not "fit in" however hard you try and squeeze them into "a box" because that's the way things are.


After I decided to try and get rid of the label, people were much less fearful and more accommodating. They saw me as my personality and not as something "wrong" with me.


How is a diagnosis going to help?

I ask this because when I was assessed, it just drew attention to and exacerbated my social difficulties.

How is it going to help if no-one really understands what it is or support isn't available?


Also, I think that other people have right to say "I don't like you." and socially reject others. Not everyone can (or was meant to) get along with each other.

I'm saying this because other some other kids can't be forced to interact with AS girls if they don't want to. Nobody should really be forced to socialise if they don't want to.

So how is education about AS in girls going to be delivered?

I'm just wondering.



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27 Jul 2009, 9:40 am

^ Errm... Exam provisions to help make up for memory problems/crippling anxiety, less pressure to be 'empathetic', more support to help avoid aspie girls getting preyed on/raped - and in pretty much every way help has been available for aspie boys? Just a thought there...

I'm diagnosed but I don't remember what my results for the 'Sally-Anne' test were, though I remember being given it. So I can't speak as to my 'theory of mind'.

I agree there are different pressures based on gender. I know I have been pushed into being 'sympathetic' and 'nice' which really wasn't good because I was being preyed on and repeatedly stolen from at the time.
My support people I have now don't seem to believe that I am in fact Aspergers, because the stereotype is 'male', 'poorly groomed', 'obviously bad social skills', obsessions with things like toy or model trains, obliviously stimming in public... pretty much Rain Man or the little boy off (movie) Mercury Rising.

They don't realise I imitate other women in dress and behaviour, shop and groom myself to fit in with the right clothes and hair, stim in private where people can't see me, and act 'sympathetic' and 'happy' because I get negative comments/attitudes if I don't. People don't realise the effort involved and blithely assume a girl would not be Aspergers, and I hope this changes so there is more awareness and help available to aspie girls as well.

Interesting topic, thanks for posting.



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27 Jul 2009, 12:39 pm

activebutodd wrote:
^ Errm... Exam provisions to help make up for memory problems/crippling anxiety


I really don't know about these "exam provisions".
These really wouldn't have helped me in a productive way.

I'd much rather (personally) get exactly the same treatment in exams as anyone else and fail fairly than be given "special treatment" as a crutch.

When people have offered me "special treatment" for exam situations in the past (they found out about my past label) I have respectfully declined because I didn't understand why those accommodations were necessary and why I couldn't just sit the exam like everyone else even though I was perfectly capable of doing so.

I've actually done well in conventional exam situations.
I had to learn to manage my anxiety on my own.
It's tough, but I think it's good training.

It was not sitting exams alone for me that was the problem, it was the social life and group coursework projects that were problematic.

When I really can't do something, perhaps it's best that people know that I genuinely can't do it under pressure. Perhaps some of the elements of the course simply weren't for me or was on the wrong course. It's a harsh reality to accept that we really can't do certain things or do well in stuff we wanted to do well under pressure in in-spite of trying really hard, but that's sometimes how life goes.

In real life, people don't go dishing out concessions and accommodations all the time.

I can work quietly on my own in a pressurised exam environment (if I prepared properly), far better than I could in a crowded noisy classroom where I'd be forced to do group work.


This is coming from someone who would very probably have been classified as dysgraphic and dyslexic early on.

Individual study and self discipline can help a lot.

My handwriting is still appalling, but somehow the examiners managed to read it and gave me decent grades.


activebutodd wrote:
less pressure to be 'empathetic',


Perhaps a dash of tolerance and common sense on the part of other people would help too.


activebutodd wrote:
more support to help avoid aspie girls getting preyed on/raped


All girls and women need this kind of important advice about social self preservation these days, not just "Aspies". I don't think that enough of this advice is being given out.



activebutodd wrote:
People don't realise the effort involved and blithely assume a girl would not be Aspergers, and I hope this changes so there is more awareness and help available to aspie girls as well.


Agreed.

But I feel that this help and diagnosis (if really necessary) shouldn't be used an excuse to ostracise and socially exclude so called "Aspie" girls even further.

This kind of help should also not be relied upon as a "crutch", but should be useful and not stigmatising. This help should really be based on concrete evidence and proper investigation.

The girls should be encouraged to take responsibility for their own lives.

There should also be an awareness of complex cultural and social change, plus gender issues that are affecting everyone with a focus on the role of the media.

The role of higher expectations also.

Also the cultural/economic factors making "Aspies" more visible.



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27 Jul 2009, 12:57 pm

I don't consider exam provisions a crutch, as I got A+ on pretty much all my work but had severe trouble with exams. It's not special treatment, it's leveling the playing field - like giving a disabled person a wheelchair or grab rails so they may go about their lives. However, we do not know each other and do not know each other's circumstances so I will respectfully keep thinking what I think and not keep talking to you about it.

It would be wonderful if people were kinder and more tolerant, but they often aren't, and often that burden is divided unfairly according to gender. It's harder when these expectations are put on Aspie girls who have a hard time doing that because of theory of mind etc, so more information may help people realise that what they ask is unrealistic and they may be more understanding.

It would be wonderful also if girls, and especially aspie girls, were able to protect themselves from being manipulated or abused or raped- but sadly a lot of girls (Yes, and boys, men, women, children, farm animals lol) can't. Aspie girls by their nature have an extra layer of vulnerability to that happening.

Bottom line is, it would be much better for aspie girls to have the help and greater understanding available to them that has been widely available to aspie boys.



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02 Aug 2009, 1:14 am

While I agree that more diagnoses of girls with Aspergers would increase the support available to them, and that would be great, I (personally) think that the biggest difference could very well come from the girls themselves. I haven't been diagnosed, nor do I want to be (complicated), but I am 99% sure and when I discovered Aspergers and read about it, I felt as if a massive weight had been lifted. I could suddenly see my behaviour in a different context, and learned to understand myself better. I had always thought there must be something very "wrong" with me, since I didn't understand the motivations of other people and felt like an outsider all the time. I felt almost as if, on their eighth birthdays, adults pulled kids aside and told them some great secret about life and being a part of it - and that someone had totally forgotten to tell me. To discover that every single one of my "quirks" could be explained by Aspergers precipitated a huge change in my mental outlook. While I don't behave wildly differently than before, the peace of mind about such things that used to bother me intensely has made me a happier person.

I think it's just that before I didn't understand - I felt like shrieking at the top of my lungs, "WHY?!?!?!?!?!" And now I have the answer.



SingInSilence
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29 Aug 2009, 12:03 am

I feel a lot better now that I see other people noticed a massive difference between themselves and their peers at about 11-12 years old. I was worried that I wasn't an Aspie because I had friends and such at a younger age; now I see it's more common.

Also, all this about Aspies having the "extreme male brain" makes me feel better about having more male friends and the typically "male" stuff I do/like.

In general, that article was a nice mood-booster for me :P


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29 Aug 2009, 3:45 pm

activebutodd wrote:
more support to help avoid aspie girls getting preyed on/raped


Yes. Glad someone has touched on this. It is stupid, and criminally dangerous, to assume for any reason that your teen daughter doesn't require knowledge about sex and relationships. That was my parents' assumption - they didn't know about AS, they were just extremely old-fashioned, but I've heard that parents of girls diagnosed with developmental disorders will often assume 'she doesn't need to know anything, she'll never be able to have a love life anyway'. Trust me, if you're naive, longing for social contact (as 0031 touches on) but have usually been rebuffed in that department, and have the low self-esteem that goes with that, you're going to be a magnet for all sorts of unwelcome attention that you will not know how to deal with. This may be controversial but, AS or not, I believe teachers should be allowed to step in and help if parents can't or won't provide the necessary advice. I wish one of mine had.

As for the exam help, my problem was always that I'd focus in so hard on a particular question that I'd over-write that question and use up too much time. I used to get pretty good exam marks even while having answered only three essay questions out of a possible four. Not sure how you get round that one, really. I also felt very exposed during exams (desks spaced out in the gym), but I often felt like that in a normal classroom anyway.

I only really started making friends at school at about age 15, and from then on whether I've had female friends has very much depended on the environment I'm in. I can fake it socially enough to be regarded as maybe slightly geeky, but basically normal, among many women, but I still find there's a certain type of woman who tends to dislike me intensely on sight: the kind who actually fits the stereotype of bitchy, gossipy, cliquey and looks-obsessed. I suspect it's because there's a competitive game going on there; if you play, it's OK, but if you opt out, or never opted in, it's a threat. Needless to say, I do my best to avoid this kind of woman if I can, because I've had them as bosses and work colleagues and it wasn't pretty (and my mother was one, and that's a whole other bundle of laughs...)


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29 Aug 2009, 4:33 pm

Thanks for sharing that article. As I started my online search about AS it was pretty clear from my googling that most information out there is about male youths, it was hard to find much on adult aspies much less anything about adult women. I came to my own conclusion that there is more than likely a different set of 'aspie norms' for women compared to men. I still strongly fit the aspie symptoms, I score high on the quizzes and I have at least 75% of the traits from any given aspie list.

As for that "Sally-Anne" test I would think that most adult aspies would pass the test, I'm certain that I would have failed for longer than the expect 5 year old standard for the test. But eventually, by some point in my teens, I learned to think outside of my own perspective. Maybe I'm just higher functioning than those who still would fail the test as an adult?

Like others have mentioned in this thread, I started to have a difficult time socially at around the age of 10-11. It's when the kids around me started getting interested in popularity, dating, fashion, etc. and I was clueless, in my own world. I also became an easy target for getting picked on. In both the 5th and 6th grades I had someone who I thought was a friend who turned on me and got most of the kids in the class to hate me all because it made the supposed friends look cool. I just dug deeper into myself.

As far as friends go, I've usually had one best friend that I stuck to like glue and a few acquaintances. My problem was that I was always choosing the friends who would move away. I don't know how I did that. Eventually because the relationships with girls were so complicated I went to having mostly guy friends. It was so much easier.