Autism and Asperger syndrome underdiagnosed in women
MONKEY
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I didn't get diagnosed until I was adult.
Before that my parents sent me from one doctor to another and aspergers and autism were never brought up. I was lucky enough to have a therapist who knew about it and brought it up to me and my parents.
The resources for aspergers is so scarce here. It took a long time for us to find a doctor who specialized in adult aspergers.
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skywatcher
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I've known a considerable amount of women who should have been diagnosed with an ASD, probably as many or more than males I've known. Most seem to have that female emotional sense to the degree that they can at least get by well enough to not need a diagnosis (or never get diagnosed). I've known one who should be diagnosed with Asperger's but is diagnosed with ADD. Of people I know with Asperger's, I can't actually go on that. I went through the Marshall College Program and got to know something like 20 Aspies on a first name basis, however with the exception of a few of them, they were all males... and my answer is about speculation on people I figure might have AS but go undiagnosed, and there's hardly anybody I know who's male, they are all female. From my perspective, it could make up the difference.
Not to mention... isn't there a disorder called NVLD, that is more prevalent in females than in males, and is almost identical to Asperger's except some small differences that seem like gender roles between aspects of AS. Of course, AS is diagnosed mainly through observation, so this isn't a 100% thing, nor is it close to being that high - someone could have these minor differences for other reasons, such as their own personality type, how they were raised, etc... either being male or female. I'm just saying, statistically, maybe the missing number of women with AS are found in the NVLD population? Perhaps they balance out?
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Skywatcher
-"Look to the future, be aware of the present, and beware of the past." -Me
I believe a number of factors are involved.
Females as a rule, apparently tend to develop faster in areas particularly effected by ASDs. If someone fails to take this into account and compares a female in one of these areas to the general population or a male with AS, then the measurement is gender-biased and fails to take into account the need to make such comparisons between comparible people. We would not compare a 4 year old to 6 year olds to determine if they are developmentally matched to their peers, and since gender does correlate with a number of differnences in areas relevant to ASDs we need to compare a female to her gender matched age-peers to determine if she is developing comparibly with her peers in any area where there is reason to suspect or expect gender based differences.
It may be that females (be it due to innate qualities or the way society treats people according to gender, or an admixture of these things) expend more effort attempting to "fit in" and adapt.
It does seem that there might be some gender based influence on responses (be these the result of innate differences or the result of society treating people differently on the basis of gender expectations) to frustrations and impairments associated with ASDs, with boys apparently being more likely to respond in a disruptive manner that gets attention and strongly motivates attempts to find out what is going on, whereas females may be more inclined to respond in ways that do not get such attention and that might even be considered "desirable" from the point of view of adult care givers (for instance being quiet and cooperative and stringently following rules while becomming increasingly withdrawn is less likely to generate a decisive response than being loud and physically disruptive in class). Even when boys respond this way, it is still more likely to "stand out" as there is a societal expectation that boys behave a certain way and a different set of expectations for girls. So when a girl becomes withdrawn it may just be seen as her being "a quiet girl" but when a boy becomes withdrawn this might "ring"
more "alarm bells" in the minds of observers.
The criteria and most literature has been formed around males and their traits. There is reason to suspect that gender may influence a number of these things, (such as the content of special interests) so that making assumptions about likely content of such interests on the basis of reports predominately or exclusively about males, skews assumptions about the content of special interests so that the kinds of interests more likely to occur in respect of females are often dismissed (as possible ASD related interests) out of hand due to not meeting expectations and assumptions about content.
Some girls are more accepting to people with differences. I know there are some girls that would verbally or physically abuse but those are not in the majority. In my experience a girl would come up to me sitting on my own and ask if I'd like to sit with her group of friends. They didn't mind if I didn't talk at all.
Girls don't usually have aggressive meltdowns like boys do. They keep it all bottled up inside, which is what I used to do, but there were some moments when I did lash out. All that frustration bottled up inside was not a good thing.
Now I know not all girls were like this, but these can be some reasons why girls are overlooked when it comes to diagnosing them with AS.
Basically I think I was not diagnosed because of my christian upbringing. I was taught to pray for illness when I got sick. I hardly ever saw the doctor unless I was gravely ill. I'm sure my mother tried to pray the autism out of me, like she once did with depression that was misdiagnosed anyway.
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Wow, thanks for this article. I had no idea about the ED/ASD connection. I was pretty sure that my son's AS came from my side of the family, as most of my maternal relatives have a lot of AS-like traits (a bunch of very eccentric but brilliant engineers, one of whom lived at home until his 40s), but between all of my own AS-like traits and my teenage anorexia, I'm beginning to wonder if I should look for a diagnosis myself. (Not that that would really mean anything, since I seem to have gotten by pretty well without therapy and the few things that other people might be bothered by, like not having close friends outside my hubby, don't really bug me.) In fact, before my eating disorder, in my early teens, I spent so much time with my books and refused to come out of my room (what can I say, my books were really good!), that my mom would actually yell at me for "acting autistic." (At that time I'm not sure many people knew about Asperger's, so my mom was obviously being hyperbolic, but maybe she had a point.) Come to think of it, I was hardly ever smiling in any of the pictures from when I was small, and half the time I wasn't looking at the camera. There is also the issue of me using the word "hydrogenated" correctly in sentences at age 2, among many other $5 words. And being homeschooled from first grade onward because I was extremely intelligent but had social problems (including five serious discipline incidents in one day).
As for masking symptoms, some of my "special interests" as a small kid were etiquette, "How to Make Friends and Influence People" and other sociology/psychology how-to guides that would explain things like duration of eye contact, etc., conversational reciprocity, etc. So that might have something to do with my relative success at not getting outed for weirdness. (Instead, people think I'm cold and aloof, or an intellectual snob, or ditsy if their conversations are so dull and pedestrian that I don't hijack them with my special-interest soliloquies. )
So, here's my only thing: Is it possible to have AS without routines or sensory aversions? Aside from sneezing and squinting in bright sunlight and going ape-crap bananas if people around me are coughing, sniffling, jiggling, etc. while I'm trying to take a test (hence, in combo with my dyscalculia, my ADHD diagnosis), I really don't have problems with sensory stuff. And I have no routines that I can think of, other than at the gym. (Although I am fine with eating the same thing for like a month in a row. Is that a routine, though? I wouldn't care if someone made me a different meal. It just doesn't occur to me to eat anything else.)
I would suspect that women are underdiagnosed, and I'd imagine it's because some conditions manifest themselves differently physiologically depending on one's gender. For instance, if a man gets a heart attack, he is more likely to exhibit the "classic" symptoms of radiating chest and arm pain and be diagnosed immediately, whereas a woman may experience abdominal pain and nausea, and not be diagnosed right away because she's not presenting with the easily-recognized symptoms that males present. The medical community needs to account better for the fact that there are two genders and therefore, there may be two different sets of symptoms to look for.
Could the more covert bullying that girls engage in make it less obvious that a girl is having problems socially? IOW, with boys it may be more loud taunting and maybe physical altercations vs. subtle social knife-in-the-back-while-pretending-to-be-nice with girls, which would be harder for adults to notice.
I hope that this "female profile" is eventually collected into a set of presentations of autism, with a note about tendencies, but not flat-out "the is the autistic female profile, and this other one is the male profile." I think what may be found is that explosive autistics of either gender are more likely to get noticed, and that that presentation is more common, but not exclusive to, males. There may a significant number of non-explosive, quiet males getting missed, as well.
(I was a very quiet kid (shutdown rather than meltdown, at least where anyone could see, nearly mute, passive, etc), and as long as I got good grades no one seemed to care about anything else. I think I was seen as a relief to the teachers -- a boy they didn't have to tell to behave every 5 minutes.)
Well sensory aversions are not a diagnostic criteria item (I personally believe everyone with an ASD probably has some kind of sensory anomally, but that this does not necessarily take the form of an aversion and is not necessarily detectable to all effected persons).
So far as I can recall off the top of my head, the criteria sub-set that refers to routines includes three items and only one item of the three needs to be present for the sub-set to be met (so yes, it is possible to meet the criteria without routines).
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