Girls With Aspergers - Why

[Jannih]

I found this interesting article on another website which I think is very interesting. I can certainly relate to it.

 

 

 

More than Just Quirky

 

Because they may have different symptoms than boys do, some girls with Asperger's syndrome don't get diagnosed.

 

 

Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child's behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, 'quirky' had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. "If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out," Liane says. "She would try to take it away from the other kid, because she didn't get that not everything 'monkey' was hers." Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. "Growing up, I tried everything?psychotherapy, group therapy, antidepressants?none of them gave me a better sense of the world or my place in it," she recalls. "For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all." Doctors were hoping the psychological tests would yield-up some clues.

 

The "Sally-Anne" test involved a simple skit: 'Sally' put a marble in the basket and then walked away. Once she was gone, 'Anne' took the marble out of the basket and put it in a box. When 'Sally' returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn't know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn't understand that other people don't know everything they know, and vice versa. Psychologists refer to this as a "theory of mind," and people who fail the Sally-Anne test are said to lack one, meaning they can't anticipate other people's thoughts and feelings. Liane's daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger's syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.

 

It's not uncommon for girls with Asperger's to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don't think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger's manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger's seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.

 

But much more research is needed before those anecdotes can be marshaled into a coherent picture. "Ultimately, we might want to look for different symptoms in girls," says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. "But we have a lot more questions than answers at this point." Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.

 

Anyone who knows a boy with Asperger's syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.

 

Now, replace oscillating fans with something more conventional - say horses or books - and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. "Girls tend to get obsessed with things that are a little less strange," says Elizabeth Roberts, a psychologist at New York University's Asperger's Institute. "That makes it harder to distinguish normal from abnormal." That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls' obsessive interests reflected the interests of girls in the general population; the same was not true for boys.

 

In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. "From my personal experience, they seem to have a greater drive to fit in than boys with Asperger's do," she says. "So they spend a lot of time studying other girls and trying to copy them." When social settings change, this can spell disaster. "As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn," said one Aspie woman who asked not to be named. "Not only do you lose your own identity, but if you end up surrounded by the wrong people?mimicking their behavior without understanding the motivations behind it can lead to big trouble."

 

Of course, it's not just different symptoms that stymie diagnosis?cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. "We tend to notice shyness in boys as 'off,'" says Loveland. "In girls, we can almost see it as a good trait." And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls ?even Aspie girls?learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.

 

But even as they effectively mask Asperger's in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. "By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can't keep up with all the nuances," says Janet Lainhart, a doctor at the University of Utah's Brain Institute. "Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable."

 

Not everyone is persuaded that the symptoms of Asperger's differ between boys and girls. Ami Klin, director of Yale's autism research group cautions that no Asperger's trait can be defined as gender-specific quite yet. "It's a possibility," he says. "But I don't know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has."

 

What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support?including special education and behavioral therapy?that has proven so helpful to boys with Asperger's. Even worse, their desperation for human interaction?combined with their inability to gauge the intentions of those around them?can make girls with Asperger's easy prey for sexual predators. "That is a real distinction and my real concern for girls on the spectrum," says Klin. "That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren't getting the right guidance."

 

Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don't muddy up the data. As a result, only a very small body of work addresses the Asperger's gender gap, even though such studies could lead to better diagnosis of both autism and Asperger's.

 

Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. "A lot of people see Baron-Cohen's work as 'politically incorrect,'" says Loveland. "Any time you start talking about a biological basis of sex differences, you are looking at controversy."

 

Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger's. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. "They really want to understand how to do these very-female things, they just need the guidance to get there," she says.

 

Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane's daughter wasn't the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. "It was like a light bulb went off," she says. "I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity." And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. "Her experience has been totally different from mine," she says. "She's had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn't be able to tell which one has Asperger's."

 

http://www.newsweek.com/id/168868

 

[Mumble]

Thanks for posting that, it's really interesting. It's an issue I've struggled with because I'm not a 'girly' girl at all so where people have said girls don't fit the stereotypes of AS I've looked at myself and thought hell, I do, what does that make me?

 

I guess what needs to be looked at is statistical variation (hence why they need a bigger sample) - I'm concerned that a director of an autism research group says that he can think of exceptions to the rule - that suggests to me that he has a very poor understanding of how large-scale research works and the implications of the results.

 

Personally, I don't feel that AS has two gender specific types - my view, and that's partly covered by some things in this article is that girls are far more (and not always consciously) socialised by their parent/s into acceptable ways of being - being taught to copy others, to dress nicely, behave well - the 'rules' and especially boundaries of what it means to be a girl are actually clearer so they perhaps appear to fit in more - in fact some of the characteristics of being a 'proper' girl may fit well with being on the spectrum in the early years, only appearing a little old fashioned It's when these rules change/get too complex to fit a neat systematisation that problems may be noticed. I don't think aspie girls are more adept at copying - I think girls may be more adept at copying and the rules (though actually perhaps more complex) are made clearer to girls.

 

[baddad]

being taught to copy others, to dress nicely, behave well - the 'rules' and especially boundaries of what it means to be a girl are actually clearer so they perhaps appear to fit in more

 

I think girls have a much wider range of behaviours that are accepted as 'normal' - social expectations of boys are very narrow (football cars computer games etc) and anything outside of that attracts comment/attention. Girls who like things boys like are accepted as 'tom-boys', and if they are overly obsessed with things like neatness/tidiness/pretties/sparklies etc that's accepted as part of the 'normal' continuum too. Another big factor, i think, is that female brain pathology is different and they have more 'circuits' dedicated to communication from the outset. When that is compromised by (i.e.) autism it is less obvious than in boys, because they still have more 'circuits' in the wings that mask the full effects. I think for that reason it's women at the HF end who get overlooked the most. Among the profoundly autistic the 'masking effects' of that different brain pathology become less apparent.

 

L&P

 

BD

 

PS: meant to add that among their PEERS the difference becomes more disabling. From the age of about 11 onwards girls come under all sorts of gender/peer pressures, and thats probably why later diagnosis is much more common in girls - it's about that age that the 'differences' start to attract the attention boys attract in infant and primary years.

 

 

Edited February 21, 2009 by baddad

[Special_talent123]

im a girl who has autism not aspergers though. i was dx late because people were trying to find the right diagnosis for me they went from speech delay and learning difficulties at age 4, to dyspraxia, then in 12, 13's they were going through Xfragile syndrome, ADD and aspergers which got diagnosis wrong. i have just read in my notes that i was diagnosed at age 14 with classic autism in april as i can talk but i struggle. they felt aspergers didnt fit in my category

 

i do still have obsessional behaviours- cant stop talking about them, i draw them. mainly because i struggle to imagine.

i struggle to make and keep friends.

eye contact is a weakness for me i find it uncomfortable people may think im being rude but im not.

there is so many traits i have.

 

i have LD associated with this

Edited February 21, 2009 by Ihave_unique-autism

[Mad cat lady]

I'm not a girly girl either! I always fitted it with boys better (still do)

 

My AS went unnoticed for years, mind you I don't think my mother would ever have sought professional advice even if she had been concerned

 

Great post though, I will have to read it a couple of times, as it takes a few attempts to get things like this to sink in properly.

 

MCL

[NobbyNobbs]

another shy tomboy here. although i had very limited friends at primary school i managed okay. it was a small school and the social rules were very clear. there was no class/race differences, we were all white and middle class and that was all we knew so there were only two social groups to belong to - girls and boys, and anatomy told me which one i belonged in.

 

by the time i got to secondary it was already falling apart. suddenly there were gangs of girls, and i still dont really know how they were worked out. i hovered on the edge of several groups - i discovered by making my intelligence available to other people i was tolerated, although i was never chosen when it came to group work, i was just the person who had to go somewhere to even up numbers.

 

my obsessions were unusual for my age, but okay gender-wise. i started collecting books, ornaments and anything else i could put into order, then rearrange.

 

i missed two years of school, suffered from anxiety which meant i could not leave the house and depression so crippling i couldn't get out of bed. but i was a teenage girl, so that was all okay!

 

the article was very informative, and highlighted clearly the problems facing girls in getting a diagnosis. i find it odd that girls are expected to be more socially aware, and better at communication, yet a defect in this for boys is considered a problem, while a girl who cannot function socially is overlooked.

 

the basis of most psychological disorders is deviation from the social norm in that area. yet the levels for AS are defined by the male social norm, and girls who are naturally at a higher level therefore dont qualify.

 

if you moved it into quantitive terms: a NT male score is 50, an AS male score is 25. the social norm for females is 60, and a girl scores 30. While she is above the level to qualify as AS (25) her deviation from the normal level for her gender is greater (-30 instead of -25 for male) therefore surely her problem is as severe as the male who gets a diagnosis of Aspergers

 

time for some proper research!!

[Jannih]

I'm definitely a girly girl. I love posh frocks , make-up and jewellery. Any given opportunity and I will be wearing them ! I don't know if it has anything to do with coming from a family of all girls and constantly being "bashed up" by boys throughout my childhood. After all who would want to hang out with boys like that, let alone copy their interests, behaviour etc.

 

I can't multi-task and I can read maps etc. I was exceptionally good at reading/spelling, hopeless at maths. My obsessions were Greek mythology, religion and genealogy -one at a time of course. This is the reason why I can't get my head round this extreme male brain theory. I know I have a number of autistic traits but I don't fit the classic desription. For that reason I think there are a number of girls falling through the net. Let's face it, as long as they don't present a problem to the smooth running of a class room, they will be ignored unless they have parents who take a sufficient interest in their development.

[Mumble]

Another big factor, i think, is that female brain pathology is different and they have more 'circuits' dedicated to communication from the outset.

Hi BD, is there any research that supports this - it isn't something I've heard before? At some point, when I can get the things I want to say a bit clearer in my head, I'll start a separate thread on language/communication because I'd say it's one of my biggest problems and I have some questions on it.

 

This is the reason why I can't get my head round this extreme male brain theory.

The extreme male brain theory doesn't state that those with AS/ASD are extremely male or have male characteristics!! It's been misquoted and misused so many times that this is the assumption people make - by academics as well as the lay-public. Gender issues (and particularly distinctions) for some reason give rise to sometimes quite argumentative and/or emotive exchanges which make it very difficult to look at what the actual issue is. In addition, not everyone/thing will fit a theory - theories such as this are built on statistical likelihood, not certainties. It doesn't mean you're not autistic/whatever if you don't fit one theory, in all likelihood it means that someone somewhere has misunderstood how the statistics are being used.

 

Let's face it, as long as they don't present a problem to the smooth running of a class room, they will be ignored unless they have parents who take a sufficient interest in their development.

Not always. There are some professionals out there who take an interest and care.

 

[baddad]

Hi BD, is there any research that supports this - it isn't something I've heard before? At some point, when I can get the things I want to say a bit clearer in my head, I'll start a separate thread on language/communication because I'd say it's one of my biggest problems and I have some questions on it.

 

Hi mumble. Can't point you to any specific research at the mo (busy) but will try to find something later. It's a fairly generally accepted that women's brains are wired differently to men, and that most of these differences are to do with aspects of communication etc. the differences are also the reasons they are supposed to be better at things like multi-tasking, empathy, organisation etc and the reason why they are supposed to be less good at things like map reading/parking/spatial stuff (which are the areas boys brains are supposed to be 'wired' for). It's also been highlighted as the reason girls tend to fair better in exams etc, as the standard teaching methods are more suited to 'female' learning systems. It's actually a big part of the 'male brain theory' you mentioned - that women with autism have brains wired more like men's than other women do. I actually disagree with that, because many boys with AS I know are less 'boyish' than most boys too - or, at least, their obsessions are not the predictable Cars & Football ones. Of course, none of those things are 'rules' and there's huge differences between individuals and all of those factors exist outside of the autistic community too.

 

L&P

 

BD

[bid]

I agree with BD re. girls being over-looked at school because they tend not to display the 'challenging/hyperactive' behavior shown by the majority of boys with ASD. My mama always says I was very quiet and tidy as a child, so she really didn't 'think' about me much as I was no trouble...although at my assessment she did say she had always had an uneasy feeling at the back of her mind that I was very vulnerable.

 

Once I got to secondary school it became increasingly clear that I was an oddity, both in my clothes and my interests. When I was 17/18 I remember I took the active decision to model myself on the other girls at school, and started to wear make up and look at the clothes they wore. For me it was definitely an act of 'survival' as I realised I didn't stand a chance as I was

 

I then spent the rest of my adult life up until the time the idea of an AS dx was mooted modelling myself on women I thought were socially successful.

 

Another reason I think many women with AS remain undercover as it were, is because if you are young and relatively pretty, men in particular can find the fact that you are 'kooky/fey/ditzy/vulnerable' quite appealing. On the down side, I think it can leave you very open to varying degrees of abuse, because I think women with AS are not necessarily that good at recognising unhealthy/abusive behaviour or knowing what to do about it.

 

I think I am quite feminine when it comes to clothes and my beloved sparklies...but from what other people have said I have a more male attitude to various aspects of life, and my DH says I am more 'straighforward' than normal women!!

 

Bid

Edited February 22, 2009 by bid

[baddad]

Mumble - did a quicky search and found this. Dunno how reliable the site/etc is, but it does give a quick overview:

 

http://www.livescience.com/health/050120_brain_sex.html

 

Girls are also better at washing up, and generally have small feet so they can get right up close to the sink

 

[Mumble]

Girls are also better at washing up, and generally have small feet so they can get right up close to the sink

Well if men designed the sinks better in the first place...

 

On a more serious note ...

 

I read that and kept thinking 'yes, but...'. I suppose my question is, are these brain differences there at birth or do they develop over the person's lifespan in the context of socialisation/enculturation?

 

Ouch, my head hurts even trying to figure out what I'm trying to say. :lol:

 

[baddad]

Well if men designed the sinks better in the first place...

 

On a more serious note ...

 

I read that and kept thinking 'yes, but...'. I suppose my question is, are these brain differences there at birth or do they develop over the person's lifespan in the context of socialisation/enculturation?

 

Ouch, my head hurts even trying to figure out what I'm trying to say. :lol:

 

 

I think it would probably be the same answer used to explain onset of autistic symptoms at 2-3 years... the 'difference' occurs as the brain develops but the blueprints for that development are there from the outset. I don't agree with that theory completely (I think if an organ - any organ -achieves 70% of it's growth in the two years immediately after birth then it's a bit niave to take the external environment completely out of the equation - whether as a direct 'cause' or an indirect 'trigger'), but i think it's probably mostly right.

 

L&P

 

BD

[pookie170]

I watched a documentary a fair old while ago where they wired lots of peeps up and watched what was going on in their brain whilst listening to speech, conversations, reading aloud of texts and so on.

In general, the women's brains showed much more activity than the men's, for reasons such as those Baddad highlighted earlier....

I wish I could remember the name of the prog, I suspect it might have been one of the Prof.Robert Winston ones, but not 'Child of our time', I don't think.....

 

Probably!!

Edited February 23, 2009 by pookie170

[Leanne Thomas]

I liked this article, but one thing I don't like about it (and other articles about asperger's sydrome in girls) is what is said about special interests; they claim that girls usually have "more conventional" interests, more similar to our peers. Despite what they say, this is certainly not the case for me, nor for another Aspergirl I know; a girl I know has an is has an avid knowledge of sports cars and racing vehicles, and I have extensive knowledge and ritually research and immerse myself in tonnes of information on Orthodox Judaism...my interest is rarely sought out by 'neurotypical' people, let alone other Aspergians. My other interest is with other languages; if that was seen as a "conventional" interest, then surely every person on the planet would be speaking 2-3 languages!...HONESTLY. (sigh)

[kerryt84]

I liked this article, but one thing I don't like about it (and other articles about asperger's sydrome in girls) is what is said about special interests; they claim that girls usually have "more conventional" interests, more similar to our peers. Despite what they say, this is certainly not the case for me, nor for another Aspergirl I know; a girl I know has an is has an avid knowledge of sports cars and racing vehicles, and I have extensive knowledge and ritually research and immerse myself in tonnes of information on Orthodox Judaism...my interest is rarely sought out by 'neurotypical' people, let alone other Aspergians. My other interest is with other languages; if that was seen as a "conventional" interest, then surely every person on the planet would be speaking 2-3 languages!...HONESTLY. (sigh)

 

I have a strong interest in Ordodox Judaism too Glad to know I'm not the only one, lol

 

Kerry